Just thought I'd post this note to let anyone new coming here know that we have protested MedHelp tagging Lyme Disease as an autoimmune disease.
'Autoimmune' means that your own immune system attacks your body by mistake, instead of attacking invading viruses and bacteria.
Lyme, however, is caused by bacteria called Borrelia burgorferi (B. burgdorferi or Bb, for short).
MedHelp has indicated it will fix this error in the website, but it could take a while for reasons I don't know.
There is a possible reason that this error has been made: there is a split in the medical community over Lyme disease. The Infectious Disease Society of America (IDSA) takes the position that Lyme is a hard disease to get and an easy one to cure with a couple of weeks of antibiotics; IDSA has held this position for quite a long time.
Contrary to the IDSA position is the International Lyme and Associated Diseases Society (ILADS), which takes into consideration more recent research that shows the Lyme bacteria can and do hide in the body in internal cyst-like areas they create, where antibiotics cannot easily penetrate. In addition, Lyme bacteria have a very slow reproductive rate that makes them less susceptible to a short course of antibiotics. When the standard antibiotics given are not capable of breaking into the cysts where the Lyme bacteria are hiding, and when treatment is stopped after a short period of time, Lyme can still be present and continue to give symptoms as before treatment.
When faced with a Lyme patient who has been treated with a short course of antibiotics but is still ill with Lyme symptoms, the IDSA position is that the Lyme was actually cured, and that the continuing symptoms are an over-reaction by the patient's immune system fighting against bacteria that are no longer there, and you are well whether you feel that way or not. End of treatment.
On the other side, ILADS says that if there are still symptoms, then the disease is not eradicated, and treatment should continue.
Logically, Lyme should be categorized as an infectious disease caused by bacteria, regardless of one's position on allegations of later-developing auto-immunity, but so far the classification has not changed here on the website, although I believe it should. Just thought you should know.
Yes, basically, the medical camp that would deny that we have active infections and deny long-term treatment would label us as having "post-Lyme syndrome," a poorly defined. supposedly autoimmune, disease. And that's only if you had a CDC positive Lyme test at one point in time.
We do have a lot of symptoms in common with various autoimmune diseases, but as noted above, a key difference is the cause. Our immune systems are not just firing against our own bodies, but are actively fighting an infection. An important implication of this different root cause is treatment: While steroids are often used to control autoimmune attacks, they are contradicted in Lyme disease because they shut down the immune system.
It is not a simple labeling issue, since our treatment hinges on the acceptance that the infections are persistent and difficult to cure. If we accept the mislabel of autoimmune, we have no prospect for recovery beyond the IDSA recommended 2-4 weeks of antibiotics.
I've posted this before, but it feels like a good fit here. From the Columbia University Lyme and Tick-Borne Diseases Research Center Website:
"THE LYME DISEASE CONTROVERSY
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue."
This is totally unheard of in the medical community as far as I know. It is a really big deal and gives us a whole new perspective on why those of us with Long-Term Lyme disease (30 years for me) may take antibiotics for many years and still be in more pain than before we even began that dang anti-biotic regimen.
Sure, antibiotics are great - they really do kill off the Lyme disease, but the antibiotics don't clean all of the dead bacteria pieces out of the body. These pieces have been shown (in the paper that the blog is about) to actually actively REACT with the immune system (the dead bacteria pieces incite a release of cytokines *ouch*).
When the antibiotics get through breaking the Lyme into little dead pieces, you end up with a kind of disseminated Lyme soup that is not only in your joints, but also it has now spread all over your body.
You can't point to where it hurts because it hurts dang all over!
Someone please tell me how we get those left-over pieces out?!? They are what's causing all the pain and suffering. Welchol works a little, but it causes much pain. We need a better way to get those dead bacterial pieces out!
Interesting article -- but the second half of the article blows some pretty big holes in the theory presented in the first half, that being that continued symptoms are not continued infection, but are simply reaction to dead, post-treatment bacterial fragments or immune system reaction.
"A critical issue to address is whether the amorphous material left behind following antibiotic treatment inflames the joints. The authors could not answer this question directly because of the limitations of the mouse model." Meaning: because mice are mice and men are men, we can't tell if the junk left behind after treatment actually does inflame the joints.
"Histopathology is unlikely reveal joint inflammation, even in the untreated animals, because laboratory mice do not reliably exhibit joint inflammation so late (4-5 months) during B. burgdorferi infection." Meaning: the mouse immune system stops reacting 4-5 months after infection even if the infecting bacteria are still present and alive, so joint inflammation won't happen, and we can't tell if the lack of persisting inflammation is because the bacteria are dead or because the immune system is not reacting any longer. Side note: The human immune system reacts the same way to a Lyme infection.
"Instead, the authors conducted a test tube experiment to see whether the deposits had inflammatory potential. They ground up joint tissue from antibiotic-treated mice in buffer and applied the homogenate to cultured mouse macrophages. The macrophages responded by producing TNF, a key cytokine that promotes inflammation. The more tissue that was added, the more TNF that was produced by the macrophages. In contrast, joint tissue from uninfected mice did not promote TNF production by the macrophages. Therefore, the deposits had the potential to spark inflammation, even after motile spirochetes were eliminated by antibiotics. The debris would continue to inflame the tissues even after antibiotics killed all live spirochetes, explaining why symptoms persist in ~10% of Lyme arthritis cases even after antibiotic treatment."
Translation: In a test tube, ground up bits of joint tissue from Lyme-infected (but treated and presumably cured) mice were mixed with a chemical to see if there would be a reaction like the immune system would have in a live mouse that had been treated with antibiotics. The resulting conclusion of the test tube analysis was that in about 10% of the Lyme-infected mice that had been treated with antibiotics and all the bacteria were presumably dead, there was still an immune-system-type reaction -- although no such reaction would have been expected because the antibiotics should have killed ALL the bacteria and therefore there should be nothing to react to. In humans, this is called 'post-Lyme syndrome', meaning you were sick, then you were treated, and if you still have symptoms after treatement, it is your over-active immune system reacting to dead bits of Lyme bacteria, NOT that you are still infected with live bacteria. This is the basis on which standard Lyme treatment is structured: a couple of weeks of antibiotics and you're good to go, no matter how lousy you feel or that your tests are still positive.
"The relevance of the deposits to Lyme disease in humans could be questioned because the MyD88-deficient mice did not have a complete immune system." Meaning: the mouse test might be invalid because the mice had messed up immune systems that might not react fully, so the results may be wrong.
"The authors addressed this concern in the Discussion by mentioning a recent study that described a TLR1 variant linked to severe inflammation and treatment failure in Lyme arthritis patients." Meaning: the docs passed off this issue as unimportant because of a recent study that located a certain aspect of the human immune system that could explain this exception ... but that's just a guess at the moment.
"Although the gene encoding MyD88 has never been examined in Lyme disease patients, it is conceivable that the TLR1 variant or different forms of other immune genes lead to deposits of Borrelia antigen in the joint and other host tissues." Meaning: We've never looked at whether this theory applies to humans, having looked only at mice, and it's possible (but not proven) that some variation in the immune systems of various humans could leave little bits of immune-system trash lying around that results in a positive Lyme test.
"The authors also addressed the possibility that the deposits are really biofilms, which generally resist killing by antibiotics. Biofilms are believed to be populated by persister cells, which are in a nondividing state that allows bacteria to tolerate antibiotics." Meaning: Lyme bacteria can create slimy shields in the body that allow Lyme bacteria to hide from the immune system, thus resulting in a continuing Lyme infection despite treatment.
"According to the authors, if the deposits had harbored persister cells, those cells should have resumed growing when conditions became favorable for growth again. Because the skin and joints from the treated mice were culture negative and because the skin also tested negative by xenodiagnosis and transplantation assays, the authors quickly dismissed the biofilm hypothesis. Stricly speaking, the authors are correct. Persister cells should start multiplying again in fresh culture medium. However, it's hard to dismiss the biofilm hypothesis completely given the known examples of culture-negative chronic infections associated with biofilms (see this review for one example). Electron microscopy of the joint tissue could reveal whether these deposits are intact spirochetes or debris." Meaning: the study is flawed because it does not take into account the ability of Lyme bacteria to hide from the immune system and from antibiotics, by cloaking themselves in the slimy shields impenetrable to the immune system. This aspect is understood by Lyme specialists, but not generally by others in the medical community.
"Regardless of their exact nature, deposits of antigen have never been detected within the joints of Lyme arthritis patients. Allen Steere's group failed to find such deposits in pieces of synovial membrane removed from 26 patients with antibiotic-refractory Lyme arthritis. The findings of Bockenstedt and colleagues, who detected the deposits in a location outside of the synovial membrane, suggest that Steere's group was looking in the wrong place." Ah ha ha! Steere was looking in the wrong place! Love it.
Steere, you see, is one of the great Lyme deniers and has caused much misery to be inflicted on those with persistent Lyme infection by denying them treatment. Steere has been a big influence on the treatment standards used by the IDSA (Infectious Disease Society of America) that holds firmly to the belief that a short course of antibiotics is all you need, and if you still have symptoms of Lyme after that, it's your immune system overreacting.
Lyme specialist who lean toward the standards and approaches of ILADS (International Lyme and Associated Diseases Society) recognize the existence of biofilms and the ability of Lyme bacteria to hide from the immune system, and that antibiotics to pierce the slimy shields are needed AND other antibiotics are needed to then kill the exposed Lyme bacteria.
Bottom line: I would revisit the assumption that you are just dealing with trash left over in your body after the Lyme party. I would see a Lyme specialist and get diagnosed and treated. If you need help finding such a doc, let us know -- we are glad to help.
Thanks for posting this! Stricker is one of the well-known LLMDs, no secret there -- so I don't hesitate to mention his name in the open.
The whole article is interesting, about the ins and outs of how Lyme research is funded and approached -- and how the politics of Lyme has ... 'infected' it all.
Here's the final paragraph of the article:
"Scientific knowledge depends upon the free marketplace of ideas and on public trust. We can no longer afford to empower dogmatic researchers who ignore contradictory findings and pursue their favorite lines of research, leading to dead ends. Nor can we afford to continue to erode public trust by using research to pursue political ends. It is time to establish a scientific agenda that stimulates funding for research on the mechanisms of B. burgdorferi persistence and eradication of persistent infection in Lyme disease."
Yeah, but what if it is all just left-over bits of Lyme debris making us so sick?
You seem rather passionate that the answer to why some of us stay sick even after years of antibiotic treatment has to be complicated. Maybe it doesn't. Maybe it's as simple as clearing out all that debris. Remember, this debris is not just innocuous trash - it is immune-system reactive. In other words, even though it is already dead, it invokes an immune response in the body - inflammation, flu-like symptoms, etc. So, it is rather dangerous and extremely painful. The only good thing about it is that it is not reproducing.
Look, Jackie, I have read all the internet Lyme information you have. After all, I have been laying in bed in horrible pain for 5 years with just my laptop for company. I've been to not one but 3 Lyme-Literate doctors who all tried to help me.
I was pretty darn sick 5 years ago when I found out I'd had Lyme disease for the past 30 years. That's when I first began antibiotic treatment for it. 6 weeks in I got so sick I cannot even describe the immense amount of pain I was in. At the time, I was told it was this so-called Herxheimer reaction to the bacteria die-off and if I just got through that, I would feel better. Well, 3 years go by, then 5 years, and I'm not feeling any better - just worse and worse and worse. A true Herxheimer reaction lasts only a few days to a couple of weeks. What I was and am feeling does not even resemble a Herxheimer reaction. I now believe that idea is completely false and there is something else entirely going on.
Maybe the disease takes on a whole new meaning if you have it for 30 years, but all I know is that I tried just about everything and felt like absolute crap. This is what makes me think there might be some other mechanism at work here. Something terrible happened to me after taking those antibiotics that i still haven't been able to come back from.
That's why when I read about Bockenstedt's mouse research bells went off in my head. It fit everything that happened to me! The Lyme disease was pretty bad when it was alive - I couldn't swallow, couldn't play guitar any more, and had a very hard time walking. But this was NOTHING compared with what happened to me after I tried to kill it off!!!!!
SO much pain all the time all the time I mean ll the time! What could explain that? What was different before as compared to after I took antibiotics. The Lyme bacteria is actually not that hard to kill off. Antibiotics kill it very quickly. (of course there are always the unsubstantiated claims of cyst forms and hiding and all that) but in any animal study, it has been shown that the Lyme bacteria dies off just fine within a matter of days once the antibiotic reached high enough levels in the blood stream.
So, please. Before you go trashing a real scientist for being a scientist (yes, her results are limited to mice and in particular immune-deficient mice) please consider what the research is trying to tell us. Ms. Bockenstedt will be the first to tell you not to take her research outside it's limited scope - as she told me when I wrote to her her with much enthusiasm. But this is not a weakness but a strength in scientific studies. I can't tell you how many of the "scientific" papers I find online that don't even have a control group!
I mean doing any research without a control group - you wouldn't know what to compare your results with! Do you know what a control group is?
Please read her research a little more closely before you go and criticize what you so obviously don't understand. The way she found the immune-reactive debris was through an imaging technique that allowed for the subject to be alive while being scanned in 3 dimensions.
She was trying to find out if, in fact, Lyme is as resilient and they say. So she prepared a generation of mice without the ability to kill off Lyme disease naturally (immune-deficient) all the while keeping some who were normal (this is the control group). She then infected both populations with Lyme bacteria whose genes had been spliced with a green fluorescing protein. This is Lyme disease with some genes that glow green.
Then, after several months, she applied common antibiotics - here is where yet another control group comes in - The antibiotics were applied to the normal infected mice and the immune-deficient mice. She then imaged them using an awesome technique that allowed for the mice to be alive during imaging!
This is just amazing. What she found was that in both normal and immune deficient mice, the bacteria had been killed off in the first 18 days of antibiotic treatment. This is to be expected with antibiotics - they do work fast. But she found something else that she would explore further in a later study:
Even though she found no whole motile spirochetes, she found a sort of green fluorescing soup concentrated mostly in the mouse knee and ear areas. And this green goo she would later find was definitely causing an immune system reaction.
These mice were infected for only a few months - I can only imagine how much Lyme goo I have all over my body after 30 YEARS of infection!
Please. Don't knock science for being too scientific!
You are entitled to your opinions as I am to mine. What I am knocking is not 'science for being too scientific' (whatever that means), but the willful ignorance that the IDSA and their fellow travelers engage in.
You say: "Antibiotics kill [Lyme] very quickly. (of course there are always the unsubstantiated claims of cyst forms and hiding and all that)"
You might want to rethink your 'of course' assumptions about Lyme versus its ability to hide in areas of low blood flow, its cystic forms, and related issues -- all of which get in the way of treatment effectiveness, as treatment is decreed by the IDSA/CDC.
After you've suffered from Lyme for 30 years without getting well, you might want to reconsider your touching faith in the IDSA positions. You say, "3 years go by, then 5 years, and I'm not feeling any better - just worse and worse and worse. A true Herxheimer reaction lasts only a few days to a couple of weeks. What I was and am feeling does not even resemble a Herxheimer reaction." I would agree that you don't seem to be Herxing. So .... find a new doc with a new view. Were you taking just doxy? I wouldn't be surprised. It doesn't deal with the cystic form of Lyme, nor coinfections. If you're hurting and doxy isn't kicking the ailment, then there's something wrong with the treatment and/or the diagnosis.
You say, "I can't tell you how many of the 'scientific' papers I find online that don't even have a control group!" Hon, you ARE the control group for the IDSA, only they aren't bothering to do the work to progress against Lyme.
Walk on the wild side. See an LLMD; read 'Cure Unknown.' What have you got to lose at this point, after 30 years of misery? Not to put too fine a point on it: I'm well; and you're not. And think about co-infections, which the IDSA-types are often not interested in.
If you need help finding an LLMD, let us know. We're happy to help.
OMG, it is all so very confusing! No wonder many of us starting treatment are still unsure of what is wrong with us. I posted about how scared I was that my lymph problem was cancer, but mystery diagnosis petrifies me! Especially concerning is the fact that Lyme and autoimmune disorders mimic each other, leaving mainstream doctors baffled with how to treat. I am so glad that my doctor is concerned and caring enough to insist that I stay on the doxy and suppressing his urge to give me a steroid until after my lymphectomy. Sure, pathology probably isn't going to show Lyme just like my blood (however, I will ask if my lymph node contained "green goo";) when they take it out.), but it will rule out some other things. I am unwrapping the layers of my disease like an onion, a giant stinky rotten onion, but I am focused on getting to the healthy core! Leaving no leaf unturned, I plan to see 2 different LLMD's, stay with my Hopkins intern, my hospital endocrinologist and rheumatologist and my newest addition an acupuncturist. Why not, right? I'd give my pain an 8 today, not an 11 like 2 days ago, can you tell? There is a tinge of hope in there somewhere:)
The left-over debris from Linda Bockenstedt's study is green due to the experimental technique used - the debris is not actually naturally glowing green!
It's called the "green fluorescing protein" and it comes from some kind of deep sea jellyfish that actually do glow in the dark. Experimenters attach this glowing green protein to the bacteria's DNA - so that when they reproduce, their offspring contain this glowing green protein.
It is used so that the bacteria - or in this case the remnants of bacteria - can be easily seen when imaged.
But even though our spirochetes are not glow-in-the-dark, it looks like their dead remnants are still there causing an immune system reaction.
I had the lymphectomy and my giant 3cm axiallary lymph node apparently showed nothing! Imagine that. Why are all my lymph nodes so big then? There must be something in there, right? To which I get no reply. Crazy!
Good question, Jackie. Pathologist were originally asked to screen for cancer, but I requested that my doc ask for it to be screened for Lyme and coinfections as well. The doc says that it came back negative, but I don't know if anything other than cancer was actually looked for.
Mojogal, clinically I have Bart, but frye labs result was negative.
If the tests used to screen for Lyme were Western blot and ELISA, they may have produced a false negative, because they rely on your immune system being up and running smoothly, rather than looking for direct evidence of the Lyme bacteria. Just a thought.
It's certainly not from a lack of LLMDs or antibiotics! I have seen 3 LLMDs over 5 years and am currently seeing one now. All really great doctors, too. I have taken 5 different antibiotics for Lyme and various co-infections - each for several years including, but not limited to, Minocycline and Doxycycline.
It is also not from a lack of trying alternative treatments either - some so ridiculous I can't believe I even tried them! To name a few (some more reasonable than others): hyper-barric oxygen therapy, Samento, MMS, and even the Rife machine!
I have taken every vitamin and mineral known to man and tried so many different diets I can't even remember them all.
I have tried pro-biotics, pre-biotics, and if they made them, I would try post-biotics.
The only things that helped me at all, but only at first, were cholestyramine and welchol. But even those hurt like mad while I was taking them - hurt so bad, in fact, I had to stop. It was weird. They caused a lot of pain but yet improved some symptoms (like the migraine headaches, the extreme photosensitivity, and many cognitive problems). But then they stopped helping at all and only caused a huge amount of pain - for a long while even after I stopped taking them!
This is exactly what happened to me on antibiotics - they improved some things right away (such as my ability to swallow) and then caused so much pain that I wish I could go back, never take antibiotics and never swallow again! I know this sounds extreme, but it's not if you consider the sheer agony I have experienced.
For some reason these 3 totally different things - antibiotics, cholestyramine, and walking long distances - all cause the exact same variety of symptoms. The symptoms are extremely painful and equally as strange. Some of them are migraine headaches, joint pain, shooting leg pain, a weird kind of foggy blurriness, fever-like sweating hot and coldness, extreme fatigue, anxiety, and photo- and skin sensitivity, bizarre intestinal distress, immense spinal pain, and a particularly nasty feeling of having been poisoned.
Antibiotics and exercise both kill unwanted bacteria - antibiotics do it directly and exercise does it by improving the immune system - so these 2 things might be responsible for the so-called die-off pain. But cholestyramine? That doesn't kill anything. All it does is supposedly remove toxins from the body by disallowing the re-absorption of bile from the intestines (therefore forcing the body to create more bile - a cleansing agent).
So I'm left wondering what these 3 things have in common that they cause the very same specific symptoms?
I've heard various explanations such as that the cholestyramine stirs up the (unspecified) toxins causing a re-emergence of symptoms. But this utterly unverified explanation does not address why I was in MORE pain (much, much more) six months into my cholestyramine treatment? Wouldn't I have fewer toxins by then?
And what the heck is going on here?
After trolling about a zillion websites, blogs, and message boards, I have found something significant:
There are 2 distinct groups of long-time sufferers: those who DO improve with long-term antibiotic treatment and those who DO NOT improve with long-term antibiotic treatment. Now, I'm talking about long-time sufferers here - YEARS of suffering - because people who have had Lyme for only a short time all seem to improve with antibiotics.
I've noticed that the people who DO improve tend to have negative Lyme blood tests and the ones who DO NOT improve tend to have positive Lyme blood tests.
This is a HUGE discrepancy.
What if these are 2 completely different diseases which present with similar symptoms? One that is improved with added antibiotic treatment and one that is not only not improved, but indeed worsened with added antibiotics?
I know that for me, the longer I stay away from antibiotics the better I feel.
I know that people are going to get all upset that I even suggested that those with negative standard Lyme blood tests may actually have something other than Lyme disease…But why?
Wouldn't you rather know:
A. If you are indeed infected with the Lyme bacteria and not something else, and
B. If that bacteria is dead or still alive and reproducing in your body?
Luckily, we all may know for sure very soon because of this new nanotube transistor technology - the Lyme Nanotubes - will be able to tell if you have even a tiny drop of Lyme in your body. And, it will be able to tell if the infection is alive and active! This technology will be coming to market soon and we can all finally put this controversy to rest for good.
Quacks will no longer be able to take advantage of people who are suffering with long-term Lyme. The message boards will finally clear out and we will all be able to tell who actually has Lyme disease who has similar symptoms but is suffering from some other disease entirely. We will finally be able to filter out what really works and what does not work!
I am just so tired of everyone with some mysterious joint pain lumping their two-cents in with Lyme disease! What if it isn't? And what if the reason some herb or antibiotic works for you and not someone else is because YOU DON'T ACTUALLY HAVE THE SAME DISEASE????
I just want to get better and I can't with all this extra information interfering.
Also, JackieCalifornia, please look up the definition of a "control group" in an experiment and see how very and utterly important it is.
Are you familiar with the term 'Lyme rage'? You might look that one up yourself.
I gather you're upset and not feeling well, but why are you bashing me? I'm not your doc. I'm not diagnosing or treating you, or conversely, failing to diagnose or treat you. I have no obligation to help you. I don't get paid for being here. I come here only because I've had Lyme and want to help those who have it now. Even you. Even when you somehow blame me for you not being well.
But that said, let's think about what might be in the way of you getting well and see if there are some avenues to suggest, since I can't think of anything else to do today (not).
First thing: I don't know if you have Lyme. Never met you, know nothing about you except what you post here. I'm not medically trained, as I state over and over here.
You say "I just want to get better and I can't with all this extra information interfering." How do you know what information is 'extra' compared to 'necessary' when even you and your docs don't know what's going on with you? In fact, your comment sounds rather Lyme-ish: irritation, and inability to think clearly and deal with data input.
If you were treated only with doxycycline, then I would see another doc. Doxy is, to my reading, largely ineffective after the earliest stages of infection because the bacteria encyst and cannot be reached by the medication. My LLMD never gave me doxy. Get a new doc and try again.
Probiotics will not cure Lyme. They are supportive therapy.
Cholestyramine and welchol: I've taken neither of them and haven't investigated them, but they worked for you at a certain level -- perhaps because they were killing off whatever bacteria afflict you and you were experiencing a Herxheimer reaction. That means the meds were working, and you say you felt better when the worst part was over. That's definitely a clue to follow up on. I never took either of them, so can't comment further. Sometimes the dose is too high or needs to be managed by pulsing or some other method, to avoid the massive die off that overloads the system. **What did the doc say?**
Ditto with antibiotics. Some people seem, from what I read, to be supersensitive to treatment, and it may needs to be started and possibly kept at a lower and slower level so your body doesn't get overwhelmed by the die-off. It's like having a messy and overloaded house: if you try to clean it all up and out in the same day, you will make yourself nuts. Do one room at a time.
If you did not talk with your docs about the over-the-top reaction you had, then you should have. If you did and they ignored you, get a new doc.
Your reaction to the abx and cholestyramine and exercise all sound to my uneducated ear like die-off reaction. That may be a clue that treatment is *working.* What does the doc say? If the doc blew it off, then find another doc who isn't so dogmatic about the perils of an over-the-top Herx reaction. I am not familiar with the mechanism by which cholestyramine works, so can't comment specifically, but it's clearly cleaning house.
Take that as a clue rather than a problem, and figure out how to manage it to your benefit or decide it's not suited for you. Why do you assume that six months is more than enough time for the bugs to be gone and stop giving you misery? You seem to have a lot of assumptions about what should be happening, but Lyme didn't sign on to that contract.
You say: "I've noticed that the people who DO improve tend to have negative Lyme blood tests and the ones who DO NOT improve tend to have positive Lyme blood tests." Uh, have you got the cart and horse in reverse position? Those who are not improving are still sick and would be expected to still have positive Lyme tests. Those who have improved are well and so have negative blood tests. Perfectly logical. Proves nothing except that some people get well and some haven't yet.
You say, "What if these are 2 completely different diseases which present with similar symptoms? One that is improved with added antibiotic treatment and one that is not only not improved, but indeed worsened with added antibiotics?" Tell me why treatment would worsen the infection, apart from Herxing, which is an apparent and not actual worsening of the illness.
"I know that for me, the longer I stay away from antibiotics the better I feel." Then perhaps your body has Lyme at a stand off, but it's still lurking. Maybe you feel lousy, but compared to a Herx, feeling just lousy now feels like 'feeling good' to you. Maybe your Herxing is just too strong and your docs need to take that into account.
"I know that people are going to get all upset that I even suggested that those with negative standard Lyme blood tests may actually have something other than Lyme disease…But why?"
Why would we spend time getting all upset? If you have something other than Lyme, then get a doc to figure out what it is and treat it. Problem solved.
"Luckily, we all may know for sure very soon because of this new nanotube transistor technology - the Lyme Nanotubes - will be able to tell if you have even a tiny drop of Lyme in your body. And, it will be able to tell if the infection is alive and active! This technology will be coming to market soon and we can all finally put this controversy to rest for good."
Good luck with that. Will wait to hear how you do.
"I just want to get better and I can't with all this extra information interfering."
Lyme overload. Makes mental processing difficult; I had it too. It's gone when treatment is done.
"Also, JackieCalifornia, please look up the definition of a 'control group' in an experiment and see how very and utterly important it is."
So, you're volunteering to have Lyme and not be treated just so someone can use you as an experimental control? You don't sound all that happy now, so why would you want to do that? I thought you wanted to get well.
Look, I can tell you are miserable, but no one here is at fault for your illness. You really need to find a doc who knows what s/he is doing.
I went through 20 docs before I got a diagnosis and was treated. It was worth the journey.
Go for it. What have you got to lose but a lot of misery?
In a way though it is autoimmune. Autoimmune says the body attacks itself. But do we 'really' know about these diseases anyway.
In my opinion the body IS attacking itself with lyme. The infection still IS there, but it hides it tissue, joints, CNS. The body, in attempt to get at the bacteria, attack these areas. In this way it is autoimmune, is it true 'autoimmune'? Not sure, but like I said, what really is? It's a still largely understood sphere.
I think in the future we will realize a good deal of autoimmune is the body trying to attack some foreign invader we just can't see yet. Like Lyme.
But is it some infection that has left the body and the body keeps attacking itself? Unlikely. From all the research papers I have read lyme persists on, almost impossible to entirely eradicate. With that said, it is possible to live symptom free.
You say: "In a way though it [Lyme disease] is autoimmune. Autoimmune says the body attacks itself. But do we 'really' know about these diseases anyway."
Actually, quite a bit is known.
The IDSA (Infectious Disease Society of America), the voluntary group for MDs who practice in the infectious disease area of medicine, hold the point of view you also hold: that Lyme is a simple infection cured by a short course of treatment with doxycycline, and if any symptoms continue after that, then it is the immune system overreacting to an infection that is no longer present.
These views however were formed before the understanding of Lyme as a persisting infection that has ways of avoiding detection by the human immune system, by creating biofilms in the human body where the immune system cannot detect the bacteria, and also by means of the Lyme bacteria hiding in cartilage, where the immune system has a difficult time reaching due to low blood flow. What the immune system can't see, it can't eradicate.
Doxycycline does not pierce the biofilms or reach into the cartilage, so the Lyme bacteria simply hide, doing their dirty work in silence, resulting in the various symptoms of Lyme disease. Lyme specialists (LLMDs) treat with drugs to pierce the biofilm as well as antibiotics to kill the then-exposed bacteria.
You say: "In my opinion the body IS attacking itself with lyme. The infection still IS there, but it hides it tissue, joints, CNS. The body, in attempt to get at the bacteria, attack[s] these areas. In this way it is autoimmune, is it true 'autoimmune'? Not sure, but like I said, what really is? It's a still largely understood sphere."
(I assume you meant a 'largely MISunderstood sphere.')
To the contrary, there is quite a bit of work that has been done in deciphering the peculiarities of Lyme. Lyme patients who are treated with steroids (to suppress the body's immune system, in accord with your theory that Lyme is an autoimmune disease) do not get better, but instead get worse. That reaction signals that the immune system is fighting the Lyme bacteria, not attacking the body.
You say: "I think in the future we will realize a good deal of autoimmune is the body trying to attack some foreign invader we just can't see yet. Like Lyme."
The law of Occam's Razor is that the simplest and most straightforward is likely correct, rather than some other complex and convoluted explanation. Thus, given that those treated with antibiotics against Lyme bacteria get well but those who are not do not get well, Occam's Razor appears to be in play here.
You say: "But is it some infection that has left the body and the body keeps attacking itself? Unlikely. From all the research papers I have read lyme persists on, almost impossible to entirely eradicate. With that said, it is possible to live symptom free."
Lyme can be eradicated with appropriate treatment. The problem is that nonLyme specialists treat only with a short course of doxycycline, which is ineffective in piercing the biofilms shielding Lyme bacteria.
You say: "In a nutshell lyme is both an infectious disease an autoimmune. It's a persistent infection and a disease where the body attacks itself to get at this persistent infection."
Again, Occam's Razor says the opposite, as well as the existence of those, like me, who were fully and adequately treated for Lyme -- I have had no further symptoms for several years and my tests are all negative.
Suppressing the immune system is the exact opposite of a cure.
I'm not sure what gave you the impression I side with the IDSA. Attention needs to be in the details. I believe I said "It's a persistent infection and a disease where the body attacks itself to get at this persistent infection."
Also, the autoimmune aspect of it is especially valid in psychosis brought on by the lyme disease.
this is straight from the ilads website:
"In addition, B. burgdorferioutside the brain can release outer coat lipo¬proteins and flagella that may provoke antineuronal antibody production (mo¬lecular mimicry) that can disseminate to the brain; these multiple mechanisms can evoke autoimmune symptoms in the brain, including intrusive symptoms,obsessiveness, movement disorders, paranoia, and other symptoms."
If you look even at various articles on the Ilads, there are even plenty of articles talking about this duality.
I am not saying that the Lyme Disease has left the body. I am also not is saying that the infection is gone and it's a leftover autoimmune system reaction. And I am definitely not saying it's a simple infection to treat.
What I, and many others are saying who do NOT side with the IDSA is that it IS a persistent infection that CAN trigger an autoimmune reaction either alone or directed at these tissues containing Lyme. The body is attacking it's own cells NOT because lyme is NOT present, but because it IS present.
And of course steroids are not going to work here. You give steroids, you suppress the immune system, the Lyme bacteria will multiply and you have an even greater infection without an immune system to fight it.
And counter to what people believe, not all that much is known about autoimmune disorders or we'd have a cure already and people wouldn't be walking around with half as many as they do currently. There has been an explosion of them in the past half a century. And we don't know what is causing them. We don't know why they increasing, although there are theories and we can provide CERTAIN TYPES relief by shutting down the immune system. So no, I wouldn't say we have a handle on it and even say our current models of understanding on it will not be valid in the next 25 years. I would say there still quite a bit to learn actually. As there is with Lyme.
Just in the last two years our understand of IgM and IgG has been challenged. We thought that was cut and dry. IgM for new infections IgG for old. But it is not holding up in research with certain bacteria, including Lyme. That gold standard is being shattered and we are finding sometimes IgM can signify a long term infection. Coming up with complex solutions sometimes means tearing down the truths we have today.
And as for what we know about Lyme - it's like many others areas in medicine. Like MS, like heart disease, we know a lot, but we also know very little.
I am actually in school right now to become an immunologist/microbiologist. I will be specifically doing research in Lyme. And I won't be siding with the IDSA.
And I can tell you Lyme is not neatly fixed by antibiotics. Most of the animals cut open, even after it was 'eradicated' from them still persisted on once cut open. It persists in the brain. The CNS. It doesn't leave. But viruses are the same. Could perhaps bacteria be behaving in a way that viruses do? The answer could possibly be yes.
This is the beginning of a epidemic with a bacteria that interacts with our immune system in ways that we previously didn't know bacteria could. It changes it's outer proteins to evade the immune system, cloaks itself, hides in tissue the immune system can't reach. And despite best efforts cannot be eradicated.
On CAN live symptom free. And some may be symptoms free for as long as they live. But where is that data? Chronic Lyme and it's treatment is still only a few decades old.
How many of these people relapse? Quite a few. I've talked to them. Some are on antibiotics FOR LIFE. Some are pulsing therapy every couple years. And of those cured now, how many may relapse in 20, 30, 50 years? And whose to say it won't come back and cause dementia or Alzheimer's after it's laid dormant in us for years. Whose to say, and many think it may be true, that it isn't the CAUSE of these diseases? Or that other bacteria like it are not the cause of these diseases we see in older people once there immune system start to fail.
So we are making strides to help cure people of Chronic Lyme, but it is not good enough thus far. It needs to be better. Having people destroy their natural flora just isn't good enough. Natural flora isn't just good for digestion. Having that natural flora there can protect you against heart disease, asthma among many others.
Lyme Disease has been there since the cave man days. It's DNA was found literally in a cave man. Our relationship with Lyme disease that it is today is more intense and more devastating than previously. Why is that. Have the new strains become more virulent? Or have we, while sterilizing our environments eradicated most of this "good" bacteria out of our lives and essentially ruining our bodies own natural protection. A rather lofty connection to draw, but nonetheless an interesting one. And while it may not have a real connection, and I'm more apt to say the Lyme strains today are more virulent, it doesn't take away the critical nature of this natural flora in our bodies and it's imperative role in our good health. Destroying it for years on end isn't a great answer in the long run for treatment against this disease. Like cancer treatment it works but is the blast everything to kill the target type of cure.
The study of the importance of our good bacteria is at the forefront of science currently:
All very interesting from a scientific, theoretical, gee-whiz point of view.
Please recall however that this site is for helping people who have or suspect they may have Lyme and/or its co-infections. As a science/medical kind of person (your handle includes 'md', so you may well be one), you doubtless know that already.
By 'helping', it means explaining what Lyme is, how it's acquired, what the symptoms are, how it's diagnosed and treated. That is our focus here, and on behalf of my fellow Lymies, I would ask your kind consideration of that any time you post here.
One aspect of Lyme is the emotional/hormonal aspect that leaves us vulnerable to anxiety and fear, which is magnified by the confusion existing in the medical community.
If you wish to be a part of this community, please help us focus on helping people here understand the symptoms, diagnosis and treatments available for Lyme and its co-infections. That is why all of us are here.
We already know all the bad things Lyme can do. We need help figuring out how to deal with all of that so that we can return to productive, healthy, happy lives.
I have nothing but the greatest empathy and understanding for the lyme community.
I myself have chronic Lyme disease myself. And ive gone through a great array of emotions since my diagnosis. this diagnosis pushed my focus into the study of Lyme disease.
In order for people to understand their diagnosis and treatment though they first need to understand what they are up against. How can you learn to fight something without first understanding that which you are fighting. When I was first diagnosed it was this kind of precise information I wish that I had received. Because it wasn't neatly laid out for me I had to dig and dig I did for almost two years straight. Talking to experts. Doing research. I wanted to know as much information as possible to make the best and MOST INFORMED decision for myself and my condition.
With all the different recommendations, lengths of treatment etc one needs to be their own health advocate. But they can't do this uninformed or with unrealistic expectations. They need to know the risks and that they might relapse. But they also need hope and to hear from people who have gotten better. They need it all.
You do not appear to understand the physical, mental, psychological and emotional destruction so many of us have gone through by the time we find this website.
While you may be entirely correct in all you say in your scientific way, this is not a purely scientific website. This site is for people, for patients, for those who need help coping with Lyme and finding effective treatment. Yes, all humans carry around an amazing array of bacteria, viruses and so on, but you appear to have let your scientific detachment overcome any concern you may have for the psychological and emotional well-being of visitors here.
Do we all have remnants of every illness we have ever had? Maybe. But the focus needs to be not 'We are all DOOMED!' but instead 'Let's figure out how to get you treated so you are back to living your life.'
I would ask you most seriously to consider the devastating effect your apparent indifference .. excuse me, your 'scientific detachment' has on the fragile and desperate people who arrive here. You may be tough as nails and indifferent to such concerns, but there are others here who are not so well positioned.
I was merely responding to you original post countering that there is an autoimmune aspect to Lyme even though it is a persistent infection.
You stated Lyme can be eradicated with appropriate treatment. I also countered that saying so far it cannot. I am not stating we are all doomed and I apologize if it comes off that way.
I want people to be informed. I want people to have realistic expectations. To know some will be entirely symptom free while some wont because of this fact that it cannot be eradicated but can be suppressed. And suppressed for life even.
In one famous case an older woman who previously had chronic Lyme disease all the sudden, years later, had terrible dementia. So terrible she was forgetting who people were unable to care for herself. One of her sons remembered she had had lyme, they put her on antibiotcs again and she got better. They were informed. They put the pieces together and instead of letting the dementia take her they remembered lyme can and does stay with people and can come back. So stating it can come back, that we don't rid ourselves of it entirely is not stating we are all doomed. It's empowering us. If that happens to any of us in the future, our children can know how best to treat us. We can have these things written into a will. We will know what is best for us in our unique situation.
So yes knowing this bacteria persists IS importwnt. Supplying these people with informed information is paramount to the treatment choices they make now, as well as later on down the line. The medical community has NOT reached a consensus on how to treat this disease. That means all that "very interesting from a scientific, theoretical, gee-whiz point of view" is perfectly pertinent to everyone that comes through here.
You badly underestimate the terrible state of many if not most of the people who find this website.
They are desperate and confused and ill, and they need help, not recitation of 'you may well never be well, and this could go wrong, and that could happen.'
The focus needs to be on welcoming, comfort, and encouragement to find appropriate medical care, and that principally means explaining why the medical profession in such a cluster **** about Lyme. You seem utterly unaware of the trashing that Lyme patients take before they crawl into a site like this.
It's like someone who has crawled for days through a blizzed to scratch weakly at your front door, and the first thing you do is give them a lecture about how more snow is coming and the temp is going to drop again and there's not much food in the house and so on.
You are at a point of equanimity with your illness, but virtually everyone who gets to this website is in very bad shape, physically, emotionally, psychologically, and every other way you can think of. Your blithe statement that 'Supplying these people with informed information is paramount to the treatment choices they make now' is all that's needed. You are ignoring the terrible state your brethren in the medical profession have already let most of us decline to -- and have told us it's all in our heads to boot.
'Perfectly pertinent' all the medical stuff may be, but if you don't care for the ailing person in any other fashion, you are not tending to the whole person. Since you're not wielding the stethoscope and prescription pad here, all you have to offer here is gentle understanding and guidance, and so far I'm not hearing that you understand that or have the ability to do so.
You say, "Supplying these people with informed information is paramount" -- but it is utterly ineffective if not allied with explanation and understanding and an unwinding of the abuse most of us have already been through. And that problem is rife throughout the medical profession. If you don't understand and deal with that, you are not really tending to the welfare of 'these people' as you call us.
You apparently have no conception of how damaged and frightened and confused those with Lyme are by the time they stumble into a website like this. Rather than perpetuate what we have already been through, why not try to do something kinder and better?
Based on being a Lyme-aware late stage neuroborreliosis patient, but not having any medical training, I know a lot for a patient based on my experience, but far less than my doctor & P.A. and those with more medical knowledge than myself.
What makes the most sense to me about "autoimmune" disease is the theory that it's really an unknown intracellular infection where the immune system is attacking the infected cells in the body trying to get to the pathogen inside. The name of the disease depends on which type of cell in the body the immune system is attacking. Each disease could be it's own separate pathogen, or maybe it's the same one (or closely related pathogens) causing them all.
In MS, the cell under attack is primarily myelin. In Sjogren's, it's the moisture producing cells. Etc, etc. I became convinced after I read the summary of a study of MS in the Faroe Islands, where they examined the data in detail and concluded that occurrences of MS in these isolated islands, which was unknown there before the WWII British occupation, met all definitions of an infectious outbreak.
I personally think that the use of "autoimmune" is misleading when used with Lyme. And of course there's the baggage that comes along with this term for Lyme patients thanks to the IDSA's insistence that we are no longer infected, merely suffering from an unknown Lyme triggered "autoimmune" disorder. Funny how they can't seem to figure anything out about this "autoimmune" disorder, despite a decade of research.
While it does indeed seem that Lyme interacts with our immune system in ways we haven't seen before (including suppressing it in some cases), it's not like Polymyalgia Rheumatica, for example, a disease my friend has. She's had to stay on prednisone for decades. Without prednisone, she had disabling muscle pain and weakness. With it, she feels normal. But prednisone nearly killed me, enabling my Lyme, Babs, & Bart to run amok.
The description of an autoimmune disorder where the immune system is overreacting and destroying important cells just doesn't translate well to Lyme. It is interesting, though, how many autoimmune disorders Lyme can mimic. Complex stuff! I hate an unsolved mystery.
While I do indeed believe that some people with disseminated Lyme are cured, I am coming to the conclusion that those with late stage neuro Lyme are unlikely to eradicate the infection. I've read examples of finding it in some organs, but primarily in the brain. Even my doc's P.A. said they don't use the word "cure." There are just some patients they can't restore to wellness, and there are the still unknown numbers who relapse years later. I think md2013's example of the older woman with sudden onset dementia responding well to abx years after Lyme treatment is an important example and one that I will forever be aware of.
This is not to be doom and gloom or to frighten new people looking for answers here. Quite the contrary. Most patients can get well again and there is that hope for seeking patients.
But there are some that just aren't cured. I think acknowledging this can indeed be empowering. I now recognize the reality that I'll need to pay more attention to my body for the rest of my life than someone who never had Lyme. I'll have to make sure my immune system is well supported with excellent health and nutrition and be quick to tackle any symptoms suggesting a return of Lyme, and to make sure my family understands that, too.
We could make SOOOO much more progress if we could get a really good test. I remember reading an article by Dr. Burrascano when he was working with Alan MacDonald, who had a grant to develop a culture for Bb. He did, and would run cultures on Burrascano's patients. That's how he was able to associate so many symptoms with Lyme as well as learn that patients were indeed relapsing even after months of treatment.
This was 20 years ago, and it was breakthrough stuff! Tragically for all of us, the big name researchers thought they must both be crazy. They just didn't believe it was possible and chose to dismiss them instead. But these two showed how the bacteria could clearly find an immune and antibiotic protected place and/or state and then re-emerge much later.
What I am hoping is that the nifty nanotube technology currently being developed can find evidence of Bb even when it's quietly hiding in a biofilm somewhere and the body doesn't know it's there. THAT would be an awesome leap forwards. Even if a new reliable test could find active infection, research dollars could focus on better treatments rather than whatever it is the CDC and NIH are funding now, which doesn't seem to be helping patients at all.
MD2013, I am glad to hear you intend to research Bb. We need more Lyme-aware researchers!
I'm not sure why you keep making some imaginary line between you guys and me. I have chronic lyme. I had gone to countless doctors over the years. I was told it was all in my head time and time again. We are the same.
I even came here years ago in the beginning. At first to find people like me. Then to LEARN as much as I could about the disease in order to fight it when I kept getting mixed options for LLMDs on how to treat me. I wanted to know will obey better? What is this prognosis? Eventually though I turned elsewhere for more detailed information and that is when I started to research it heavily.
And i was one of those people who DID want to know what 'could' happen and the true face of this disease. And I'm sure there will be others, amongst the thousands of chronic lyme patients out there that may want to be informed too. If I hadn't been informed I may have started the first treatment regime I was given. After being informed though I did not.
Where I will agree is yes, those afflicted with this disease need comfort, support, and gentle guidance. They need to know they are not alone. And God yes, that it is not all in their heads. That they can feel normal again. And that is why they come here. And to understand what "cluster $&@!" it really truly is,
But people also come for the guidance of what they should do and we should be able to supply them with the whole picture of the disease. If we don't, then we are not catering to the whole person either.
But all in all Jackie your intentions are good. I remember you were helpful to me on here years ago.
Some of these people need encouragement, support and your right they don't need to hear what I have to say at the moment. But if they would like to know more, what I have said is here for them too. To help guide them in whichever road they take. It is just information.
I am sorry you're still struggling so much. I do think that after 30 years, Lyme is a different thing. You truly seem to be a medical mystery. It sounds like you do have Lyme (assuming you had sufficient symptoms for a clinical diagnosis) and the nasty herxheimer reaction when you started abx. But clearly there's something else going on.
My first thought in reading that you've had 5 abx for Lyme + coinfections in 5 years is that you need a more creative thinker. My doc changes meds as soon as the one I'm on stops helping, especially if it starts making me worse (beyond the herx). I have Lyme + Babs + Bart and I'm on my 12th abx after 18 months of treatment (two were stopped due to tendon issues). Three for Bart, 2 for Babs, and the rest for Lyme. For at least half the time, I was on two at a time for Lyme. Doxy was in the rotation only for about 3 months. It's just not useful long term for late stage Lyme. (I knew someone who just took Doxy for 3 years and improved only somewhat.)
I don't know what coinfections you have, but if they're treated by the same meds as Lyme, that would obviously result in fewer abx being used in treatment than my combination. Did you ever have any Rocephin or Bicillin? After 30 years I would think it's impossible to get to a reasonable point of wellness without parenteral meds. There are things that block treatment, like mold/biotoxins and yeast. Ever dealt with those? (I can recommend a yeast treatment that worked beautifully if you'd like to PM me.)
But as you say, maybe it's not Lyme. If you've never showed a Lyme specific antibody on a Western Blot, have you eliminated all other possibilities? Hemochromatosis? Brucellosis? Mycoplasma? Or maybe you had Lyme on top of something else? Or maybe after 30 years, Lyme does cause some deep and difficult to un-do damage to the immune system in addition to permanent damage to tissues and nerves.
The LymeMD blogger recently described a patient who just couldn't get well on meds and got worse after stopping them. He thought the patient might have a genetic immune deficiency and tested him for it. He was correct. Perhaps you also have a genetic deficiency such that your immune system isn't up to the task, and abx can only do so much.
I saw a video of a long talk by Dr. Rau in Switzerland. You might want to look into his philosophy and his clinic. He recently released a book you might find interesting. So much of what he said about health and nutrition made sense to me (although I disagree with his anti-antibiotics philosophy). He said his sickest patients are Americans.
I don't know if I've said anything you haven't heard of already, so I don't know if this is any help or if I'm just annoying you! I hope your current doc is creative and willing to try some new things.
P.S. Cholestyramine made me feel better at first, but then caused some intestinal problems. I actually felt a bit better when I stopped only a month later. Exercise also makes me feel terrible. I currently have no muscle tone at all thanks to inactivity. My regular PCP keeps bugging me to walk to build up stamina, but I just haven't gotten to a point where it isn't miserable. I get out of breath immediately, a chronic problem for me, and feel really horrible afterwards. Babesia has been awful for me.
"I personally think that the use of "autoimmune" is misleading when used with Lyme. And of course there's the baggage that comes along with this term for Lyme patients thanks to the IDSA's insistence that we are no longer infected, merely suffering from an unknown Lyme triggered "autoimmune" disorder. Funny how they can't seem to figure anything out about this "autoimmune" disorder, despite a decade of research. "
This is absolutely true. The IDSA has stigmatized this word when used in association with Lyme. And part of my intention today was to create a dialogue about it. Thank you for putting that into words better than I could.
I am also glad that some of what I said was helpful to you. :-)
I think that finding a good test, like you said is absolutely paramount. Without this people will continue to slip through the cracks until they are in the chronic stage. And those in the chronic stage will be denied treatment for not meeting CDC test criteria.
I think the nanotube technology is encouraging in its sensitivity.
I think the important questions to ask for that test are: would they be including a full panel (I.e many different proteins from all the different strains of lyme and all the different combinations each strain can spin out)? If not it it would encounter similar problems that the current model does.
The lyme bacteria changes its outer proteins- sometimesdaily, which means your body is changing its antibodies frequently. If they attach proteins that lyme bacteria is no longer making, the tubes may not detect any antibodies towards that particular protein that they carry. Older antibodies do stick around in the blood stream for a bit, but with that said, but it really depends all on timing.
Different proteins attached to those tubes than the ones your specific lyme bacteria are spinning out means you are failing their test. But I could be wrong here. I have only read the news articles in this which don't give much detail.
But I'm glad that new tests strategies are being funded. The ball is rolling and this is important after it had been stagnant for so long.
On the topic of detection I came across the website on diagnosing herpes the other day that said
"Many assume that if a test discovers IgM, they have recently acquired herpes. However, research shows that IgM can reappear in blood tests in up to a third of people during recurrences, while it will be negative in up to half of persons who recently acquired herpes but have culture-document first episodes. Therefore, IgM tests can lead to deceptive test results, as well as false assumptions about how and when a person actually acquired HSV. For this reason, we do not recommend using blood tests as a way to determine how long a person has had herpes. Unfortunately, most people who are diagnosed will not be able to determine how long they have had the infection (see reference 1)"
"not be able to determine how long they have had the infection" is the key sentence here, How many of walked in, took a western blog and were told 'you can't be latent lyme, look you have only IgM. That means a recent infection.'
And I immediately wonder. We can acknowledge with herpes, and even recently with other bacteria, that IgM can show a chronic infection, an infection that isn't recent, but may be old but in an active stage. why then can't the IDSA acknowledge that Lyme may perhaps be the same way. A persistent infection that in many, may only show IgM. It's the lack of imagination they process that boggles the mind.
I'm not trying to run you off. We all need all the help we can get, but it's got to be focussed on where people are right now or it just sounds like more blah blah blah.
We could certainly always use insight from trained medical people here -- the most frequently used introductory phrase found here is "I'm not medically trained, but I have [read] [experienced] [heard] that ... [fill in the blank]."
The advice/commentary offered has to be something other than boilerplate IDSA or even ILADS stuff, because while the latter is far preferable to the former, there is a big gap between Burrascano's words of wisdom and the reasoning and retention abilities of a Lyme-addled person who stumbles into this site not knowing what has hit them. Each of us has to be met wherever we are in the Lyme dance, with reassurance and explanation and talk about what to consider doing and trying next and also why things are so messed up in medicine.
If you can do that, with your medical training and your personal experience with the medical community's schizophrenia about Lyme, then please do. More power to you. I have no ownership or pride of place here ... I'm just a Lymie like everybody else.
But do be cautious with statements about steroids and such things without providing specific context. We still have people coming here who have been told to take steroids, because the nonLLMDs still run riot in the medical world. Context is especially important for those trying to understand how to manage their own quest for diagnosis and treatment, because until Lyme came along, I dare say none of us ever dreamed there was any conflict in the medical community about anything other than obscurities that are relatively minor in a given context.
Such as ... please be cautious about talking about autoimmunity so that someone reading here doesn't assume without consideration that their doc's prescription for steroids makes sense. The context in which your comment would be made is far different from what the nonLLMDs are thinking when they say 'take steroids.'
There are still so many docs practicing on Lyme patients who follow the IDSA that the first thing newbies here must be alerted to is the split in the medical community and what that split is about, so that they can make reasonably informed decisions about what they are hearing and how they are told to treat by their docs. Having that context is critical to a newbie coming here with scrip for a few weeks of doxy, no tests but ELISA/Wblot, no PCR test, and nothing else but a doc's bill and a hearty handshake out the door.
You know as a medical person that the patient's frame of reference colors everything that they hear, and the only place a Lyme or potential Lyme patient will get that context is here or at a similar site. Without that context, whatever you say to a potential Lyme sufferer will be read within the context of what their IDSA-oriented MD has told them so far. Dissing other docs is not what docs do, but there has to be an alert to a new potential Lyme patient that this split exists in the medical community and what it means for the patient in determining their own course of action.
If the IDSA doc says Blah-1 and you say Blah-2 without explaining the context of why there are two different Blahs, the Lyme-addled patient will never suspect there IS a difference, because we are taught to believe that medicine is monolithic and has its collective act together. You know that's not true in myriad ways, medicine being the constantly moving target that it is, but in the case of Lyme, it affects every decision and action a patient makes, and it falls on the patient to be in charge of that kind of decision making. Once lined up with an LLMD, the decisions are perhaps fewer, but there are some 'LLMDs' out there that are ... pretty far out there, if you get my drift and as you doubtless know. The patient has to be aware of that possibility, without having the advantage of knowing exactly what to look for in sussing out weirdness.
Every couple of weeks, a newbie that has visited with us previously will pop up here with some strange sounding stuff their LLMD is doing, wondering if it makes sense, which leads to a convo about 'well, I haven't heard of that before, doesn't mean it's wrong, but in your situation I'd perhaps check with another LLMD before committing to that course of action.'
That kind of parsing is not uncommon here, and the visitors here imo have to be alert to the split in the medical community so that they can know when to question what they are being told.
You could be extremely helpful in that regard and others, if you can couch it in terms of their being differences between docs in the still developing world of Lyme+ diagnosis and treatment.
I don't mean to be rude or dismissive of you, because it would be great to have real, trained medical people here to guide and to throw a flag on a bad suggestion or comment. But at the same time, comments about auto-immunity (as you have brought up) and other topics have to be couched in such a way that the reader has enough context to differentiate between the applications of those topics, or else they could end up on steroids to suppress the immune system as prescribed by some nonILADS-type doc who believes wholeheartedly in 'postLyme syndrome' but not in the possibility of insufficient treatment for Lyme.
And remember, someone who stumbles into our precincts with a case of Lyme-caused brain fog is going to have difficulty following from A to B, much less imagining permutations thereof and correlating them all.
Anxiety is a real component of Lyme (I am persuaded it is likely a biochemical result of the infection), and that common and potentially high levels of anxiety and confusion in someone who comes here has to be taken into account at all times as well. I mention these factors not knowing you have experienced any of them, because Lyme is such a grab bag for everyone.
The usual drill with a newbie here is (1) no, you're not crazy; (2) here's why the docs are fighting, because of IDSA vs ILADS, and (3) here's how some of us here have dealt with it. Having a framework to understand the cosmic disagreement in the Lyme field is imo critical to providing a newbie an understanding of the Lyme arena and how to navigate it. To those of us not having had the dubious pleasure of four years in med school, such schisms are unimaginable -- until we encounter Lyme.
Everything we say here to visitors is done with the IDSA mess in mind, so that the visitors are aware of the split in the medical community and can learn to navigate through and around it. WIthout that context, and with a good case of Lyme brain, the whole situation merges into mental mush.
IMO one of the failings of the medical community is the compartmentalization of medical advice: Dr A says do X; Dr B says do Y; Dr C says do Z, and there is no one to integrate those or compare or contrast them to arrive at a sensible game plan. Lyme is a prime example of that. The idea that a doc may be wrong or significantly different in an opinion compared to another doc is unthinkable to most patients ... until they get Lyme. But with Lyme brain, thinking through the muddle is contrary not only to their previous view of monolithic medicine but also contrary to the sheer mental ability of the person to reason through it all. Explanations are key, even if not fully grasped at the time.
I've just re-read your post above, and then I re-read mine, and I think we are saying pretty much the same thing. I hope you will participate here and give the wisdom of your own experience and your training and reading ... and also to tell us non-medical types when we go off the rails.
The critical thing in my mind is to explain to people that there is a split in the medical community, explain briefly what that split is, and what the consequences of it are, so that the reader has a frame of reference and is prepared to encounter it and make their own decisions on which approach to pursue.
Thanks for your interest and patience, and I hope we'll see you around the water cooler when your time permits --
"Everything we say here to visitors is done with the IDSA mess in mind, so that the visitors are aware of the split in the medical community and can learn to navigate through and around it. WIthout that context, and with a good case of Lyme brain, the whole situation merges into mental mush. "
I agree and understand your sentiments.
I'm sorry my name is misleading. I am not a doctor. It is just my initials. But I am in graduate school for microbiology/immunology. I've toyed with being a doctor but I found researcher for me is a better fit. I want to help find a way to help people like all of you on this forum. And, i hope one day I can.
And when I say I understand your sentiments I do. For those people initially here, and without information, we want the to grasp quickly that Lyme is an infectious disease that cannot be cured by such a short course of antibiotics once in the chronic stage.
The other half of the message is just as important to convey, that being: the usual docs (infectious disease, rheumatology, neurology) will almost certainly not analyze the situation as a Lyme specialist would, and promptly finding an LLMD [need to explain this term to readers seeking help] is critical, since time-since-infection can make a big difference in effective treatment esp if that is relatively short course.
Both parties (md and Jackie) make very good points. I wish there were more 'discussions' like this------they don't interfere with the nurturing and helpful threads that are the main thrust of this forum.
And who knows, some of those who are believed to be too distraught and sick might enjoy and learn.
Those are some really good questions about the nanotubes. The way I understand it - and the crucial difference between this new nanotube test and all previous Lyme blood tests is that the nanotubes will be detecting the Lyme ANTIGEN directly.
(I believe right now they are just working on antigens of the borrelia burgdorferi strain)
All other tests detect various ANTIBODIES that your immune system generates to fight the infection.
The antigen is a marker on the actual bacteria itself - and only living bacteria will bind to the nanotube via its antigen. These living bacteria will create a voltage difference across the nanotube that can then be amplified and measured.
So, the main thing is that the Western Blot, Eos protein, and whatever other tests are currently available can only indirectly say that you are infected now or have been in the past. They are not able to ever tell you if you are completely rid of the live Lyme bacteria because once you have Lyme and your body makes its various antibodies to fight it, you are left with these antibodies for the rest of your life.
The nanotubes will be bonding with the actual spirochete - and this can happen only if the spirochete is alive.
I hope this explains a bit more. Like you said, there's not all that much information on the nanotubes yet...But, the more we talk about it and discuss it with others on the internet, the more the information will perpetuate!
Keep up the good and beautiful science, md2013. I, for one, would much rather hear true science from people like you, the scientific-minded, than empty words of comfort any day!
The problem with Lyme Science is there isn't much unless you listen to the IDSA. Lyme is a crap shoot. Nobody has a protocol and most people take advice from their LLMD and from others experiences which includes reading the latest research which doesn't work for everyone.
And thank you for explaining the difference between the old tests and these new nanotube tests.
Going after just the antigen sounds a bit more promising and is better than looking at the reaction produced by an immune system that is being evaded.
For more advanced patients maybe fluid/ tissue samples will be best as spirochete are largely out of the blood in the latent stages, having nestled cozily into our CNS and tissue. Has anyone heard anything about how this will be applied to later stage patients?
"The problem with Lyme Science is there isn't much unless you listen to the IDSA."
Respectively, I disagree with that concept.
In just one journal (Clinical Infectious Diseases) Dr S, a top tier LLMD, wrote an article which ended with this:
"In summary, <18,000 scientific articles have been written about Lyme disease. Some of these articles focus on the complex pathophysiology of B. burgdorferi, whereas others highlight the clinical uncertainty surrounding tickborne disease. Because the optimal therapy for this complicated illness is still in doubt, we must keep an open mind about the treatment of patients who present with persistent symptoms of Lyme and associated tickborne diseases."
The point I was making is there are millions of articles but there is NOT one researcher or article or personal experience that works on everyone. With other diseases, there are certain protocols that really work. You tell me one lyme protocol that works on EVERYONE!
We need to hear all sides, medical and personal experiences to try to understand it. Unfortunately there are no real answers.
Yes, it is just mind-boggling the amount of data and information we have gathered about the immune system studying this disease alone!
And I can't believe that, after all that research, we still can't seem to fix the long-term Lyme victims.
That's why I never really bought into the conspiracy theories about the CDC, IDSA, and the FDA - because there really IS a lot of research on Lyme - it's not like they have neglected it. They just can't figure out what the heck is wrong with people who should have been cured with antibiotics but are still sick.
Also, they are each very conservative institutions and cannot recommend a possibly dangerous treatment without proper vetting through animal experiments and then later human trials.
A good example of why it is so important for our government agencies to be so conservative when it comes to medicine is what happened with those few doctors who were giving out bismacine shots.
(Bismacine is the metal bismuth which is the active ingredient in Pepto-Bismol)
Even though this medicine may have been an actual help for people with Lyme, it will probably never be seriously considered again because a couple of doctors thought they'd skip over the whole "testing-the-drug-out-first" bit and two people died as a result.
People are desperate and will try just about anything to get better - even direct blood injections of a toxic heavy metal!
(Bismuth is perfectly safe in the oral Pepto-Bismol form - of course only if you heed the warnings on the label.)
But that's why we have these institutions - the CDC and IDSA - so they can tell us if something is safe AND effective. They can't themselves go out on a limb and experiment with the American public! If they did, how could we trust them at all?
I'm not enraged…just disappointed. You seemed so open-minded from your first post, but I see now that I was mistaken.
You've accused me and now md2013 of having "Lyme-rage" for offering some differing views. It's like when men used to call women "hysterical" - it is both rude and totally insulting. And the funniest thing about it is that both me and md2013 were AGREEING with you!
The original reason I posted on this message board was because I was so relieved to find someone else who thought there was something fishy about calling Lyme an auto-immune disease.
I was indeed upset by the long reply you wrote in response to the Linda Bockenstedt mouse study. It was as if you'd already decided that any research that revealed Lyme disease to be eradicated by antibiotics is just plain wrong. Just because the Lyme bacteria might be dead doesn't mean we are not all suffering! We just don't know why.
In the Embers monkey study, Burgdorferi RNA and DNA were detected in organs and tissues, but even though "Cultures were kept 12–15 weeks… none were positive for spirochete growth" - meaning evidence of the spirochetes was found, but they were not viable - they were not reproducing and it seems that they may not even have been alive.
Also, the authors of the study could not confirm that, after antibiotic therapy, the monkeys were still infected: "reliable procedures to determine that infection has been cleared from Lyme disease patients have not been established."
You see, they can find evidence of the body fighting an infection by antibody tests, but cannot say for sure whether that spirochete that originally caused the infection is really there directly. They find antibodies against Lyme, but not the Lyme itself - In other words, it looks like the body continues to fight an infection that may or may not be alive and reproducing.
To me, this is an important fact. If the question of whether my body is fighting something alive or dead can be answered for sure, then I will know for sure if taking additional antibiotics is necessary for the complete eradication of the disease.
As a matter of fact, the Embers monkey study found that additional, longer-term antibiotics for monkeys still showing signs of neuropathy AFTER treatment did not improve their symptoms!
This entire study is available for anyone to read at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/.
...Each of your critiques about Bockenstedt's well-executed research was, while well-written and eloquent, decidedly un-scientific. You write so well and are so well-informed that I believe people listen to you.
So, I just wanted to point out that there may be another piece of the puzzle that people hadn't yet considered: What if those of us who have taken long-term antibiotics and are not well have something else going on - other than an active Lyme infection?
I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past. They cannot tell you if you are no longer infected with it after a course of antibiotics.
This is a very important issue. When I found that out I thought to myself, "Well, then, how am I ever going to know if I've truly rid my body of the infection?" A main reason this point is so important to me is that I would like to one day have children - but not if I'm going to pass on this horrible disease to them.
Another reason knowing whether the infection is alive or dead is so important is for treatment options. If the infection is dead, then no amount of antibiotics is gonna make it any deader!
And if it is in fact DEAD, then what in the Seven Hells am I still sick for?
That's all this whole thing has been about:
A very studious scientist who does everything by the book makes the discovery that in mice, the Lyme infection is killed off within 18 days of antibiotic treatment - and yet the mice still show signs of fighting a disease. The mice were then treated for another 6 months just to be sure.
So the mice are imaged while they are still alive and are found to have DEAD pieces of spirochetes that are MOST DEFINITELY causing an immune system reaction in the mice's bodies.
This piece of evidence alone is absolutely revolutionary!
Never have I EVER heard of a dead bacteria reacting at all with the immune system.
And if this is true in mice, then it might just be the missing puzzle piece in humans!
What is our next course of action if all our problems stem from a dead soup of debris goo stuck inside our bodies wreaking havoc?
What do we do now? Antibiotics won't help here in this situation. How on earth do we get these nasty debris pieces OUT OF OUR BODIES???
I just want people reading this message board to consider this possibility and tell their doctors about it. Especially you, Jackie, because I think you are very well respected in the Lyme community and people listen to you.
That's why I was so disheartened about the way you replied to my original posting. It was like you already had an opinion about it - "Oh, well, if someone even suggests with a scientific study or not that we, the sufferers, may no longer have Lyme, then they and their work need to be crucified."
Instead of, "Hmmm…This is very interesting. Let me see how stringent this research is and if its results are valid."
I have a background in the sciences (before absolutely collapsing for 5 years) and I know good science when I see it. This study is GOOD SCIENCE. Please take it under serious consideration...
And you're right. I am mad that the population in general does not truly understand the role a control group plays in studies and research. In fact, for the kind of research Linda Bockenstedt is doing, the definition of a "control group" is even more rigorous than for, say, a psychology study.
What Linda must do is have 2 groups of totally normal mice (the control groups) and another group with a slight tweak to their DNA (in this case making them unable on a gene level to fight specifically the Lyme bacteria) which is known as "the experimental group". (She actually must have two of this type of group where one will be a control group for yet another tiny tweak - which I'll get into later)
Then, she has to infect both control groups at the same time as both of the experimental groups. This way she has 2 groups of totally normal infected mice (control) and two groups if immune-deficient infected mice.
Now the antibiotic is administered to ONE control group and One experimental group. The other 2 groups of mice are sh*t out of luck are are stuck with the disease. BUT! They are extremely important as a comparison to the outcome of the antibiotic treatment of all the other mice.
(So now you see, Jackie, why I got just so frustrated when you said that I was the control group for the CDC! A control group of one? That just did not make sense. Plus, I HAVE the disease and HAVE been treated which, by definition, cannot be a control group. On a purely scientific level your comment made didn't make sense.)
So back to the mice:
(Gosh, I know this is tedious. But that's experimental science for ya. You change one darn tiny thing at a time and see what happens and make copious notes about it!)
OK. You now have a group of mice with normal immune systems infected with the Lyme bacteria and a group of immune deficient mice infected with the Lyme bacteria with no way to naturally kill the bacteria once in enters their little mouse bodies.
She then imaged the mice with a revolutionary 3D technique which enables her to image the mice without killing them (this technique used to burn the subject that was being photographed, ugh!). She takes their pictures a few hours into the antibiotic treatment and finds many of the bacteria already dead in both the control group and the experimental group. But it isn't until 18 days later that all the spirochetes that she can see by this technique have all been killed (cut into pieces) but have not been expelled by the body. Instead, their remains are all over the place - but mostly near the mice's ear cartilage and the mice's knee regions.
Notice she does not say anything about spirochetes that might be hiding or in a biofilm or curled up in a cyst-like form. Her experiment is limited to finding out if the antibiotic indeed kills off the bacteria and how long it takes to do so.
Meanwhile, back with the original control groups:
The normal mice infected with Lyme bacteria but that are not treated with antibiotics are photographed and found to indeed harbor many spiral borrellia burgdorferi. And the immune compromised mice are also harboring a burgdorferi infection - though theirs is raging - many many more spirochetes. Remember these are the control groups and have not been given the antibiotic.
So, for the mice that were given antibiotics, the antibiotics seemed to destroy most if not all of the bacteria in both normal mice as well as in immune-deficient mice. And in a relatively short time period! All imaged bacteria was dead as a doornail. Dead. Dead. Dead.
So, you may think, "Well, maybe some are hiding!?!" To that, I say, please read up on the technology used by the experimenters to image the infected mice:
Basically, it can take a three-dimensional cross-section of a live animal and watch, in real time, what is going on in its body. They can actually SEE the little bacterial spiraling, boring into nearby cartilage and tissue. Perhaps, when the antibiotic comes along, it can only chop off half of it because the other half is buried within the cartilage or tissue? I don't know.
What I DO know - because this experiment is so sound in its meticulousness and its rigor - is that there is indeed left-over pieces of Lyme disease.
BUT! The experiment doesn't stop there. Linda Bockenstedt was curious as to whether this left-over debris was innocuous or whether it has any bearing on the health of the mouse?
She took further experimentally stringent steps to find that indeed it was immune-reactive! Meaning that when the debris was combined in a controlled setting with immune system antibodies, there was a reaction!
This is the other miraculous part of the experiment!!! Never before has a dead bacteria of virus been seen to cause any kind of reaction with the immune system. Usually, when the body kills off viruses or bacteria, they harmlessly float around until eventually expelled by the body. Or in the case of an inoculation (vaccine), the dead virus may cause a slight immune response quickly suppressed by the immune system.
But this case is different. Linda has cautioned me against generalizing her results to humans, but I just can't help myself! If this is truly the case - the dead pieces elicit a strong immune response - then that would explain so many things about what I have experienced.
Perhaps Lyme disease in its whole spiral form does not elicit quite as strong of an immune reaction because it has evolved for millennia living with the human body. But once sliced open by an antibiotic and spread across vast swaths of cartilage and tissue, perhaps that is another story entirely.
It would explain why the longer you have Lyme before killing it with antibiotics, the harder a time you have. I just sit back here and think about how long I've had it - 30 YEARS! - and wonder how embedded it must be in my body. And how killing it off just about killed me.
A person's immune system alone can kill him or her - this is how so many people infected with the Spanish Flu died. It was their immune systems' reactions to the virus - not the actual virus itself - that killed them.
So, there you have it - why rigorous, boring, and tedious science is so important in the investigation of a biologic system.
I know many other people are still sick after trying a million medic They make little quiet peeps on the message boards once in a while saying they've tried everything and are still sick.
And people try to help, but I know it doesn't help. Nothing known seems to really help people like us.
I just wanted to offer something different. Something new to consider.
Velvet brought up bismacaine. I was 'around' when that happened and only know what happened on the forums not what was the minds of the people who believed it might help.
The doctor(s) that gave the bismacaine shots, where at least one person died from them, were certainly at fault. Their interpretation of how it might work was certainly at fault. We don't know if they were just grasping for a ''cure'', grasping for the money, or if they truly didn't understand how it might be dangerous.
I'll add another group of people who aided and abetted that doctor----- the enabler patients who didn't take the time to research the danger with them. Yes, the argument might be that they were too cognitively damaged, too sick or too 'something' to know how to research. That's very unfortunate---- and I feel truly sorry for them.
And the people who, in on line forums who didn't do it for them and warn them. Shame on them.
Then there were the people who DID warn them and were hooted off the forum or told 'you have to think outside the box'. In this case, that woman who died from it did wind up in in a box---- a coffin. :(
The Townsend Letter (!) had this to say, written by the remarkable ''Dr'' Robert W. Bradford, who jumped around, back and forth across the border between the U.S. and Mexico, depending on where the Federales were:
"The Bradford Research Institute (BRI) developed BismacineTM , an
injectable form of bismuth, shown effective against the spirochete
and cyst forms"
You clearly have a lot more time on your hands than I do. I don't have time now or in the foreseeable future to respond point by point to your many lengthy posts, but suffice it to say that I disagree with portions (and perhaps substantial portions) of what you say.
Just putting down my marker for other readers to see, so they know I haven't gone whimpering back into the woodwork.
MD2013, Velvet and Jackie ------ in my opinion you all have good points to make. I find a discussion/debate invaluable to bring up points that I didn't consider. I'm sure that many of the other members do also--- just as sure as I'm sure that many of them CAN follow and learn even though they have Lyme. I know that even in the bottom of the trough of Lyme 'brain', whatever that is, I was able to listen and learn. Never heard of OSPs, blebs, Western Blots before, now I know (and wish I didn't!)
I hope that the discussion can continue with the theories, identified as such, the opinions, identified as such, journal articles, identified as such. Ipse dixit? Not helpful, in my opinion.
I would appreciate links to the journal articles or articles written by established researchers and perhaps some cut and pastes to back up statements. Even though we know that research ''facts" are ephemeral and innately designed to be improved upon or proven wrong----- it's the best we can have at any particular point.
This forum has, in the past, been best known as a boon for the newbie who needs an explanation of his/her Western Blot, where they might locate a good llmd etc. combined with a tender regard for their sensibilities. That should continue! But there's no fault in combining that with a good dose of exploring other issues vis a vis debate about research and where it's been, where it's going and everything in between. Minds should be stretched---- even minds that are damaged and frightened and confused.
The three of you are impassioned in your own ways. Nothing wrong with that------ it leads to impassioned debate and that can be done with no ad hominen attacks on the person who has presented something different; I hope.
Okay, here's my quick collection of your greatest hits, with my comments following each:
You: "The Lyme bacteria is actually not that hard to kill off. Antibiotics kill it very quickly. (of course there are always the unsubstantiated claims of cyst forms and hiding and all that) but in any animal study, it has been shown that the Lyme bacteria dies off just fine within a matter of days once the antibiotic reached high enough levels in the blood stream."
Me: 'unsubstantiated claims of cyst forms and hiding and all that' --? Sorry, you're behind on your reading.
You: "So, please. Before you go trashing a real scientist for being a scientist (yes, her results are limited to mice and in particular immune-deficient mice) please consider what the research is trying to tell us."
Me: As opposed to a fake scientist?
You: "I mean doing any research without a control group - you wouldn't know what to compare your results with! Do you know what a control group is?"
Me: Yes, i do, and your condescension is not appreciated.
You: "Please read her research a little more closely before you go and criticize what you so obviously don't understand."
Me: Ditto re your condescension.
You: "I've noticed that the people who DO improve tend to have negative Lyme blood tests and the ones who DO NOT improve tend to have positive Lyme blood tests. [para] This is a HUGE discrepancy."
Me: Well, let's see. The sick people have positive test results and the healthy people don't. This is earth-shaking?
You: "Also, JackieCalifornia, please look up the definition of a 'control group' in an experiment and see how very and utterly important it is."
Me: You're winning the prize for 'most condescending comments in a single thread'.
You: "I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past. They cannot tell you if you are no longer infected with it after a course of antibiotics."
-- "Lyme tests can only tell you if you have Lyme now." Check.
-- "Lyme tests can tell you if you had Lyme in the past." If you have antibodies present, yes.
You: "That's why I was so disheartened about the way you replied to my original posting. It was like you already had an opinion about it - 'Oh, well, if someone even suggests with a scientific study or not that we, the sufferers, may no longer have Lyme, then they and their work need to be crucified.' "
Me: This i hyperbole at its worst on your part. Productive? No. You keep trying to tell me how ignorant and bigoted I am, but you are the one misstating what I say and casting aspersions at my comments and ability to think. And you are 'disheartened'! Oh my!
You: "So now you see, Jackie, why I got just so frustrated when you said that I was the control group for the CDC! A control group of one? That just did not make sense."
Me: You clearly don't understand sarcasm or humor. I will not spend the pixels to explain the joke to you.
You: "Plus, I HAVE the disease and HAVE been treated which, by definition, cannot be a control group. On a purely scientific level your comment made didn't make sense."
Me: Repeat: You clearly don't understand sarcasm. And I know precisely what a control group is.
You are very fixed in your opinions and seem to enjoy looking down on the unwashed masses below. I think you may have some interesting things to say, but it's reallllly hard to hear you when you're so far up on Mt Olympus.
I don't actually have any answers - just a bunch of questions. That doesn't make for a very good god, does it?
I didn't realize your "control group" comment was sarcasm. It was kind of a weird place for a "joke". Some people really don't know the importance of the whole control group thing, so I was genuinely trying to explain it. I noticed many Lyme studies lacked an adequate control group - I just want everyone who reads this to be aware of what it is and to make sure any studies they come across include it.
People too often try to fool the public with "studies" that just aren't valid. Now that everyone here knows all about control groups - no one here will ever be fooled!
And I just want to thank you, Jackie, and everyone else who actually read through all my comments - I know they are really long and sometimes boring.
The thing about people the difference between people with positive Lyme blood tests and people with negative blood tests:
What I meant was that I noticed long-term antibiotics worked for people who's Lyme blood tests never came out positive for the bacteria - Not before or after antibiotic treatment. Instead, their diagnoses were clinical (a doctor evaluated their symptoms and concluded they have Lyme)...
Whereas, the people whose blood tests for Lyme come out positive -
(and remember that once you have a positive blood test for Lyme - even if long-term antibiotic treatment worked for you - all your future Lyme blood tests will always come out positive for Lyme because there is no test out there right now that can tell you if it's all gone)
These positive Lyme blood test people are the ones I noticed do not get any better the longer they take antibiotics. I am one of those.
And I did appreciate the "good morning sunshine" comment!
"Velvet: "I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past. They cannot tell you if you are no longer infected with it after a course of antibiotics."
-- "Lyme tests can only tell you if you have Lyme now." Check.
-- "Lyme tests can tell you if you had Lyme in the past." If you have antibodies present, yes."
My questions about this confusing conversation:
Velvet---- What tests are you referring to? " current Lyme tests can only tell you if you now have or have had a Lyme infection in the past. They cannot tell you if you are no longer infected with it after a course of antibiotics."
Western Blot? And performed by which lab?
The IgM and IgG tests are topsy turvy in Lyme in all labs.
What about the person who consistently tests neg. (IgM, IgG) with a WB--- even after Lyme was definitively proven via a lumbar puncture?
What do you make of the Indeterminate ruling on some WB tests, no matter which lab?
"Lyme tests can only tell you if you have Lyme now." Check."
What do YOU say about people who have Lyme (see above) and the tests say they don't?
"once you have a positive blood test for Lyme - even if long-term antibiotic treatment worked for you - all your future Lyme blood tests will always come out positive for Lyme because there is no test out there right now that can tell you if it's all gone"
What back up do you have for this statement?
btw, lumbar puncture is not a terribly useful test for Lyme.
And then you close with 'What do YOU say about people who have Lyme and the tests say they don't?' Lyme is a clinical diagnosis aided by lab tests. ELISA and Western blot are notoriously inaccurate. PCR testing is far more useful because it provides direct evidence of Lyme infection rather than relying on the patient's immune system reaction, which is often suppressed by the Lyme infection itself.
You say above:
"Lyme tests can only tell you if you have Lyme now." Check."
What do YOU say about people who have Lyme (see above) and the tests say they don't?
Not sure why you are asking this. False negative tests are common when using W.blot and ELISA, and that's pretty well established and commented on here.
That is why PCR testing is useful: it is direct evidence of Lyme infection, not relying on the indirect evidence of a Lyme-suppressed immune system which then gives a false negative result.
"Lyme tests can only tell you if you have Lyme now." Check."
Backing out of a confusing back and forth where another person was thought to be me---- I'll start with one sentence.
Correct me if I'm wrong---- Do you, Jackie, agree with the declarative statement made--- "Lyme tests can only tell you if you have Lyme now."
Is that what the 'Check' meant? Or did 'Check' mean something else. I took it to mean that you agreed but only you can clear that up.
I asked, but didn't receive an answer (guess everyone was too busy or didn't notice it) if the 'Lyme tests' meant WB or ELISA or PCR of fluids or lumbar puncture with a PCR assay. (Igenex performs that PCR assay of the CNS fluid)
From what I've read, antibody test for Lyme are not positive forever in a patient treated for Lyme. In some patients, the antibodies linger for quite a while (months or years), but in the absence of a bacteria, the immune system will stop making new antibodies. In a patient who is cured, eventually they'll test negative for antibodies, although no one knows exactly how long.
It is only virus antibodies that persist for a life time. This is why most people do not get the same viral infection twice. If they're exposed a second time, the existing antibodies stop it cold. There are some that our immune systems cannot clear, especially the herpes family of viruses, and those can flare up when the immune system is stressed or compromised.
But because we do not maintain lifelong antibodies to bacterial infections, we can get them again and again. TB antibody tests, for example, can be positive indefinitely in some people, but it took the medical world a long time to realize that TB can survive long term ABX and can be harbored by someone symptom-free for a very long time. Some of those long term positive antibody tests might just reflect a low grade residual infection.
The presence of Lyme specific antibodies proves a patient has been exposed to Lyme. That's all. It doesn't prove whether it was last month or last year. There's terrible confusion over this. I read about one patient who got a positive IgG WB result, which is exactly what the CDC says indicates an infection of a month or more, and yet the gal was told her results only indicated an infection in the past, not a current infection. Arrgghh. I'm not a doctor and even I can understand that IgM comes first and IgG follows. Both can indicate current infection.
Six years after infection, I had an IGeneX positive IgM (I was horribly sick) and only band 41 on the IgG. I still can't comprehend how they can ignore Lyme specific IgM antibodies just because someone got bit by a tick more than a month ago.
A patient with antibodies could have been cured last month and the antibodies are leftovers. Or, the patient could be sick with Lyme symptoms and it indicates an active infecton. Or, the patient may have the bacteria lurking in their system and have no symptoms because their immune system is holding it at bay. It's been known to lurk for months or years after an initially symptomless infection.
I had a relapsing/remitting course of Lyme for nearly 5 years with periods of wellness between "attacks" of fatigue, headache and malaise. I'm very curious to know what a WB would have shown during and after each of my "attacks." I think I would have shown Lyme specific antibodies shortly after the attacks passed as I believe my immune system beat back the infection each time. Until the chronic symptoms kicked in, of course.
I read someone's notes from a patient conference in the Bay Area where a treating LLMD said that she believes in treating someone with Lyme specific antibodies even when they're asymptomatic, as she believes it's easier to treat early vs. later when symptoms appear or get worse. (She's referring to people who get tested thinking they might have been exposed, such as family members of a Lyme patient.) The antibody tests can't find something that's not there, so the so-called "false positive" is mostly a myth BEFORE treatment. Five of the 10 bands in the CDC's IgG criteria are not Lyme specific, so only if you have exactly those 5 and no symptoms can you safely say it's a false positive. Of course the newly cured who still tests positive could call it a false positive.
Make sense? Clear as mud, really. It just provides further evidence of the overwhelming need for a really reliable antigen test.
While I respect your level of detail in discussing the mouse study concluding that the mice carried only dead pieces of bacteria in their body, I don't agree with using this to conclude that borrelia is indeed easily killed with short term abx. There are dozens of studies showing persistence.
Also, the theory that the bacteria are eliminated early and residual symptoms are only about the immune system continuing to attack dead bugs does not in any way explain the people who get 'well", feel fine, and go back to their lives. Then, months or years later, symptoms come back and progress. Some get new symptoms and even get sicker than previously. I just don't believe that this is possible with some detritus floating around. And then there's all the people who test culture positive sometime later. A culture proves the bacteria is living and reproducing. Burrascano & MacDonald proved active persistance 20 years ago. Advanced Labs is proving it today with their new culture test.
Pamela Weintraub said in her book "Cure Unknown" that there is indeed evidence of some immune dysfunction that we don't understand in some "post Lyme" patients. But she also showed how there's plenty of evidence of persistent infection that needs to be treated. If the theory that only dead bugs remain and ongoing symptoms are caused only by an immune system attacking the dead pieces, then steroids should treat that nicely. Unfortunately, that's not the case, which punches a great big hole in that theory. Ten + years of studying the Lyme "autoimmune" condition has resulted in absolutely nothing benefitting these patients.
Unfortunately, you're in a category no one understands or has any answers for. There just isn't the knowledge or the tests to figure out what's going on in your body yet.
I hereby posit that the Lyme herxheimer reaction is a sham. Indeed, it happens for syphilis patients, but what happens to many of us goes way beyond the pain involved in a herx - the pain is much greater and it lasts much longer.
Th "Herxheimer Reaction" is thought to be an initial worsening of symptoms just after taking antibiotics - the theory is that the bacteria you are killing is releasing toxins. And the body takes a few days to weeks to get rid of the nasty toxins.
Well, mine NEVER seemed to go away. All of my Lyme blood tests were and continue to be positive. Most of my worst symptoms happened only after starting those antibiotics.
I cannot seem to find ANYWHERE what toxins exactly are released after killing Lyme disease. What is its chemical structure? Can we create an anti-toxin designed to block it?
We have created anti-toxins for both butulism and tetanus. Why not for burgdorferi?
I saw this one paper one time, but it was never really substantiated, that named a Lyme toxin...I'll try to find it. I don't know how valid this research is as it has never been repeated. REPEATABILITY is a major science experiment concept - just about as important as those "control groups" I force fed you guys earlier.
Here it is. This is the only time I've ever seen a reference to an actual Lyme toxin with a name and all:
"Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase."
It is from that Townsend letter where I think all of our Lyme beliefs stem from. This letter covers everything from Lyme dementia to Lyme being modified into a bio-weapon.
It's old. It's from 2006. It has a whole lotta really great words but NO SOLUTIONS for people with Post-Treatment symptoms!
What the heck do we then do with a zinc endoproteinase? Can we block it? Are we stuck with it? How much of it is there after years and years of Lyme?
Anyway, that paper is seven years old and Linda Bockenstedt's mouse study is just last year. She found not actual toxin - but she did find significant left-over Lyme debris. And that this debris is indeed wreaking havoc on our symptoms. Maybe worse the longer you had the disease?
(I just want to say, thank the good lord for spell check! Boy, did I have a hard time writing that. Ugh!)
Would you believe I have already tried just about every one of Dr. Rau's treatment protocols.
This is what I'm trying to tell you all!!!
I have tried pretty much all the natural remedies (but I do, on principle refuse to shove coffee up my rectum - I don't care how clean things get. Coffee goes into the mouth - not the anus. Always!).
I also refuse to heat my body up to temperatures that would burn even some protected organs inside the body! People are so desperate, they'll try anything!
I think it is awful how much guessing we all have to do. Who do we trust? I could never trust Dr. Rau to heat up my body until all the Lyme bacteria dies. This method has been demonstrated in Germany in fact and has injured several people by burning their internal organs!
And so what if it kills the Lyme disease? Antibiotics do the very same thing - but I, and people like me, am still left with "what happened to me after taking those antibiotics?" Yes, I believe they may have killed most - maybe not all - of the Lyme bacteria.
I think we can agree that after I took 5 different antibiotics for several years each over a five-year span, that I should have at least made a dent in the number of bacteria present in my body, right?
So, why, for all those five years and going into the sixth, am I having MORE problems than before I started the antibiotics - the so-called Herxheimer?
You may want to suggest that I do not have Lyme - but rather something else. But, the problems I had before taking antibiotics did improve after taking the antibiotics - but after, I got even worse problems - with pain mostly.
Also, as I said, every single Lyme test I have taken has come up positive - some very positive. I will list them some other time.
I am certainly not the only one who has experience this life-harrowing herxing!!!
No pain, no gain?
Is that what I am to believe?
Is so much pain really good for you? Is it helping you at all? Does it mean you are getting rid of bacteria - or is it an avoidable phenomenon?
It could be a totally useless sh*t-ton baggage of pain that I have been lead to believe that I must carry if I am to get well.
Well, I'm putting my foot down here. 5 years of treatment going on six years of unbearable pain that has only let up a bit now that I have been away from antibiotics for a while??? I don't think so. I'm willing to bet that the pain we are experiencing is totally and utterly useless to our getting well.
Is anyone else out there having this problem? Am I alone?
I have hope for the future with you there in the field.
I wonder, If indeed the Lyme is hiding, is it causing an immune system reaction?
Or does the immune system only react to Lyme antigens found in the blood stream and across organ tissues and cartilage?
Another BIG question of mine is: Is this pain I have all over my body an immune system reaction only? Or is there something else to it - like that "Lyme toxin" theory that never seemed to go anywhere?
Because, I have to say, my symptoms feel somewhat reminiscent of the flu - like fevers and chills and body aches - but there are all these other bad nasty horrible feelings I have all over my body - like this totally irritating skin sensitivity (it comes and goes), photo-sensitivity that hurts my eyes so much I can't be outside without really dark sunglasses - I sit in the dark most of the time because of this strange symptom.
These are just some examples of the terrible weirdnesses I feel. Some of them resemble flu-like symptoms, but others...I can't even relate them with any other cold or virus I've ever had before.
Oh! Here's another one: My skin gets all hot - especially around the outsides of my thighs and around large joints (hips, E=etc.) and it hurts like hell - like there isn't enough blood pumping - it almost feels like my limbs are separated from the rest of my body. And it hurts really bad!
So please take that big brain of yours and apply it to probably the century's most interesting disease!
"With about $20,000 raised, [name deleted] left on Feb. 18 for the Klinik St. George in Bad Aibling. Over ten days, she prepared her body for two hyperthermia sessions, in which her body was heated to 107 degrees while her head is kept cool. The hope is that the toxins will not survive the high temperatures."
Did Rau not learn anything from ICHT and Bachynsky? Of course, Bachynsky had other problems. :)
I read about Dr. Rau since I didn't know much, if anything, about him. I'm sure a lot of people love him and his ideas, much as they did Hulda Clark.
The Lyme blood tests that once are positive for Lyme are always positive for Lyme are:
Any blood test that looks for a Lyme antibody that your own body makes in response to the Lyme infection.
Once your body makes an antibody, it always has it - that's how vaccines for polio and such work: you will never get polio because your body was given a small dose of it triggering your body's antibody response. These antibodies are always there for the rest of your life. You will always be protected from polio!
These Lyme blood tests include the Western Blot, ELISA, IgG, IgM, Eos Protien, and there are a few other that actually measure the AMOUNT of antibodies floating around in your system.
The whole PCR and lumbar scrape is different - you are actually finding pieces of the Lyme burgdorferi DNA and RNA. So that means you were definitively infected with the Lyme bacteria at some point.
I'm sorry. I'm waning here. I have written so much my mind is mush!
OK. got it. The problem with all current blood tests, PCR, or lumbar scrapes is that you cannot tell if the Lyme disease is dead or alive and reproducing.
If it is all dead, the method of treatment dramatically changes from killing Lyme to ridding the body of these toxic left-over, immune reactive pieces!
If it is still alive - We have to figure out how to kill it for good AND get rid of those reactive pieces.
So, either way, Bockenstedt's mouse study is still important.
"Is anyone else out there having this problem? Am I alone? "
No, you're not alone. I've been sick with Lyme for decades. But I've been 'around' enough in almost all the Lyme forums to know that I can't make a definitive statement. Just guesses---- hopefully based on science, which we know is an ever moving stage.
One thing I can state definitively is that I did have a wonderful remission that lasted four years; when nothing had changed in my life except an antibiotic that MAY have been responsible. That was after taking almost every other antibiotic available----- with no great results, but just 'some'.
After moving to a state where I can't get any antibiotics I've regressed.
Was it that antibiotic? Was it coincidence? I 'think' it was the medication but I can't prove it. That's all I can say. So, the debris theory sounds good but wouldn't MY debris still have been there causing problems? (That was a Devil's Advocate question, in case you have any doubt.)
I love it! I really think we are getting somewhere here.
I know there are no answers for persistence, debris, or actual infection - but the more we talk about it and actually name our sources like you say - the closer we all will come to finding at least some truth about this disease.
Would you please name the antibiotic that you think worked for you last? Not sure I have the stamina for any more antibiotic pot-shots...but just in case! I will ask my doctor about it.
Thanks for being there. I appreciate your input and your analytical mind.
Where? LOL There are no answers yet---- or there are too many answers, one for each person who gets better or goes into remission.
Where we " might" be is opening a dialogue about Lyme. I don't expect to find an answer here-----but talking about it certainly is a step in the right direction.
I purposely didn't post the name of the antibiotic that helped me because I didn't want anyone thinking that it might be the answer to THEIR illness. But it's not a secret---- it was bicillin LA injections. For some reason most llmds don't rx it and why I can't begin to fathom!
I got the idea about it from a very intelligent woman on a Lyme bulletin board ages ago, started looking into it and found that a lot of Lymies got some relief with it. Since it was also a help to many people with syphilis it had a long track record for a spirochetal disease.
My very good (and famous) llmd balked at rxing it for some strange reason and I told him I'd find someone else who would. He was o.k. with that ----while I still continued seeing him.
So I started the twice a week injections and after about a year I started noticing I was feeling better!!!!!!!! I stayed on them for about 4-5 years,
Then I noticed about 5 years later he started rxing bicillin to his patients. LOL Go figure.
Anyway----- that's my story and I'm sticking with it. But I am NOT going to tell anyone else to take bicillin LA and they'll get better.
Wow. You know a lot of stuff! Boy, have we all done a lot of studying! And it's ongoing:
Re: "Burrascano & MacDonald proved active persistance 20 years ago. Advanced Labs is proving it today with their new culture test"
I'm not sure exactly which Burrascano study you are referring to but I did find something (that I cannot find again for some reason - sorry cave76!) that showed that the samples were -- PCR positive -- meaning actual Lyme disease DNA and RNA were detected directly...
-- But --
The samples were -- Culture negative -- meaning they did not grow and reproduce while in an ideal environment in a petri dish.
So, it looks like there is persistence of the Lyme DNA and RNA, but nobody can say definitively if this is an active and growing infection.
They say it is evidence of persistent infection because the DNA evidence is coupled with all those indirect antibody tests that we talked about earlier (Western Blot, IgG and IgM, eos, etc.) - they are taking this to mean:
"Hey look, there is the evidence that the body is fighting an infection from the antibody tests...And as further proof it is Lyme, our PCR (Polymerase Chain Reaction) test revealed actual pieces of the Lyme bacteria. And so therefor, the patient is definitely fighting a disease that u\is alive and active."
And it does make logical sense - I'll give it that!
But my problem with this logic is that there is an alternative explanation for these results and that is:
We have found evidence of Lyme DAN and RNA through PCR. The Lyme is definitely there but we cannot say weather this stuff is alive. So we take a Culture test to see if we can get some of these samples of the spirochete we scraped out to grow in a favorable controlled environment. But no! It is not viable and not growing or reproducing.
I know that Dr. Gary Wormser is like a bad word on most Lyme Message boards because of his total disregard for suffering Lyme patients as seen in that movi "Under Our Skin"...BUT since that incredible embarrassment, he has really put his nose to the grindstone to find some answers about Lyme disease and has put out a large number of papers that demonstrate truly good science:
Here you can read only the abstract, but you can see that he is trying to prove or disprove in a very controlled environment whether Lyme PCR positive correlates with Lyme Culture positive - because that would mean the infections was alive and active and reproducing even after a long-term antibiotic treatment.
He was able to find persistence - left-over Lyme DNA --- But not viability - all cultures were negative for growth and reproduction.
I have heard of Burrascano's urine test to tell you if your infection is really alive or not, but I have heard so much sketchy stuff about it - including the fact that they will not reveal how they are going to be able to do this! At $595, I think I would want have some hint of the efficacy of this test.
Plus, the nanotube tests are supposed to be really really cheap! And we know exactly what those tests are doing.
Bicillin. Never even hear of it. It is a form of penicillin. It sounds promising, but you say it took you a year to notice a difference? That's a long time - of course, not in Lyme years - it's a short time in Lyme years!
I will ask my doctor about this one - although, I am deathly afraid of taking any more antibiotics because they just totally wreck me.
Oh! And I thought you were cursing at me, "Do you have the MTHFR gene?!?
I'll have to ask my doctor about that one. A little while ago, he was following the mold guy's protocol and gave me the HLA haplotype test. The results were that I was not extra-sensitive to mold, but I did have a gene associated with chronic Lyme.
(Lots of info here: http://emedicine.medscape.com/article/330178-overview#a0104)
I don't know if that is related to toxin removal or not...but...What about the toxins? Do you know what they are? What they are called? Or are you referring to some vague over-all toxin?
Does this MTHFR gene mean that you have a hard time removing ALL kinds of toxins - or just the Lyme ones?
If anyone could name specifically which toxins are these "Lyme toxins", then perhaps we can find an anti-toxin for it. Botulism and Tetanus both have specific toxins that are combated by special anti-toxins.
The 'toxin' enigma hasn't been settled yet, regardless of what Townsend Letter, Public Health Alert states. Probably Mike Adams, the Health Range, also. :)
Studies are still ongoing and the absence or presence of a "Lyme toxin' is still being debated.
Back in 2009 Donta was one of the authors of this:
"A Novel Toxin (Bb Tox 1) of Borrelia burgdorferi"
Scroll down a few articles to find it at:
"The mechanisms responsible for many of the symptoms of Lyme disease remain to be delineated. Because many of the symptoms involve the nervous system, we postulated that the Lyme spirochetes produce a toxin that interferes with normal neurophysiological function. We have identified and cloned a gene of B. burgdorferi which encodes a protein that is a neurotoxin."
In 2012 Donta et al. are still looking:
"At present, the diagnosis of Lyme disease is based primarily on the clinical picture. The pathophysiology of the disease remains to be determined, and the basis for the chronic illness in need of additional research.
Whether there is continuing infection, auto-immunity to residual or persisting antigens, and whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs remains to be delineated."
NIH project # 1DP2OD008463-01
$2.3 million dollar project
to help develop a vaccine, of course! But hey!
"The notion of immunizing against a bacterial toxin represents a potentially general strategy for future vaccine development. With this proposal, we aim to not only fundamentally shift the accepted view of Bb pathogenesis, but also to challenge the paradigm that antibiotics must kill bacteria and non-immunogenic toxins are intractable vaccine candidates. These seemingly unrelated goals are actually quite intertwined. Our approach rests on the philosophy that a more complete understanding of toxin biosynthetic pathways and chemical structure can be rationally exploited to design novel therapeutics.
Public Health Relevance: Bacterial pathogens employ numerous mechanisms to evade the human immune system. We have discovered a novel strategy within the organism that causes Lyme Disease, who's pathogenesis remains largely enigmatic. A greater understanding of these processes will lay the foundation for developing the next generation of antimicrobial drugs."
Bicillin. Never even hear of it. It is a form of penicillin. It sounds promising, but you say it took you a year to notice a difference? That's a long time - of course, not in Lyme years - it's a short time in Lyme years!
I will ask my doctor about this one - although, I am deathly afraid of taking any more antibiotics because they just totally wreck me."
Please re-read my disclaimer (grin)
" But I am NOT going to tell anyone else to take bicillin LA and they'll get better."
Wow, that second quote by Donta et al. is everything that I have been going crazy all over this website about!
I've looked and looked all over the internet for some hint that someone is looking for answers to those very questions:
(1) Whether there is continuing infection,
(2) auto-immunity to
(3) residual or
(4) persisting antigens, and
(5) whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs...
I remember seeing this paper listed on http://www.lymeneteurope.org/news/ but I skipped over it because I thought it was just another analysis without any actual conclusions. (There are lots of those kinds of papers!) But sometimes the right questions are just as important! If we are asking the right questions, it may point us in a more productive direction.
This part bothers me, though:
"The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time."
I haven't personally seen that to be true in myself, especially, but also for many others. I would really like to know if this is true under controlled experimental conditions. Are people getting better over time BECAUSE of the antibiotics? Or did the antibiotics kill off the disease within, say, a month and people start feeling slowly better over a matter of years completely independent of the antibiotics?
My current general practitioner (not my LLMD) is finally realizing that I am really sick and not getting better.
While I am ecstatic that he has taken an interest, I am not so excited about the direction he seems to be going in. He had me take some blood-work to see if I may be having an auto-immune reaction: the tests are: ESR (Erythrocyte Sedimentation Rate) and ANA (anti-nuclear antibody).
And auto-immunity is what this message thread was originally about!
If my body is indeed attacking itself and not a foreign substance (bacteria, virus, etc.), then why would I feel so much MORE pain after 6 into my original antibiotic treatment - and then LESS pain the further away from antibiotics I get?
If mt pain is auto-immune, then wouldn't my body still be attacking itself? Why the improvement? And why the sharp up-shot in pain 5 years ago when I first began antibiotic treatment?
I mean, once you have an auto-immune problem, you always have it, right? Unless you take steroids that directly depress the immune system, your body would continue to attack itself. It wouldn't just stop doing that on its own.
Questions Questions Questions!
I do hope that Donta et al. try to adequately answer them.
"The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time."
It doesn't bother me. :)
You also said:
"I haven't personally seen that to be true in myself, especially, but also for many others. "
I have personally seen that to be true in myself, especially, but also for many others."
[I'm 'funning' with you----- :) and I hope you understand that. It's a game of Devil's Advocate.
" I would really like to know if this is true under controlled experimental conditions."
Wouldn't that be loverly? :) What sort of spreadsheet/datebase would be necessary to tally the results?
Because each person in that study has a 100 trillion different cells with 46 chromosomes in each of those cells---------because each person will have different DNA/RNA-----because each person will have different innate and accquired immunity traits------because each person may or may not comply with the parameters of the study (unless they were locked up, which I'm sure violates many parts of our constitution)----- yada yada.
Velvet---- You're asking all the questions that I would ask, in your position; ones that I have asked for different reasons.
There are many people who have to abandon antibiotics-----for real reasons not because they abhor the very thought of antibiotics.
I certainly don't have the answer to why you feel more pain with antibiotics, assuming you took them responsibly. Some people swear by Buhner's protocols. Have you tried them?
The ESR and ANA are tests that I've had nothing but 'normal' results with. Throughout my life, sickness and in health. I'm feeling more pain now than I ever have before---- but perhaps it's because I'm not on antibiotics now? :)
There's a sorta joke Lymies kid about----- it's called "The Study of One".
My Study of One answers your question:
" do people start feeling slowly better over a matter of years completely independent of the antibiotics?"
OK. I'll take your "Study of One". One definitely knows how one feels after starting and stopping antibiotics! ;)
My LLMD does follow some of Buhner's protocol - Japanese Knotweed for one - unfortunately, I did not feel any better on this herb. Also, I was on cat's claw for many years. It made me feel just as bad as antibiotics did, so I guess it was doing something similar.
I know it seems, after reading about everybody's varied reactions to different protocols, that there will never be one answer for everybody -
But I think, perhaps, that since Lyme effects nerves and we all have nerves everywhere, that all of our varied responses to meds and herbs and such might actually be leading us to a "Unified Cure for All". (I'm a physicist. I can't help searching for the Unified Theory!)
It's like back-tracing the effects to the cause(s). If you see the spill pattern of the aftermath of a drop of rain falling to the ground, you may see just a bunch of random splatter -
But perhaps those splatters can be traced back to the source - the drop of rain it came from. And from there you can calculation the speed of the raindrop, earth's gravity, and the angle in which it fell.
You can calculate these things precisely by analyzing the random, spread out droplets that the original raindrop splattered into.
Maybe we can take all of this seemingly random Lyme data - everybody reacting differently to the brand and duration of antibiotics, some people a being helped by Buhner's herbal remedies, and some people not getting any better no matter what they do - and somehow back-trace it to a common cause - something about Lyme and the human body we hadn't considered before.
Like I said, nerves are absolutely everywhere in the body, so if there is a problem on the nerve level, then it could explain all these varied symptoms and treatment responses.
Well, I'm going to go think about your paragraph here:
"Because each person in that study has a 100 trillion different cells with 46 chromosomes in each of those cells---------because each person will have different DNA/RNA-----because each person will have different innate and accquired immunity traits------because each person may or may not comply with the parameters of the study (unless they were locked up, which I'm sure violates many parts of our constitution)----- yada yada."
(Perhaps sans the "yada yada") And see if maybe there is a pattern or some sort of trajectory we can follow back to its source. It does seem increasingly necessary to find out for sure if the infection is alive or dead.
"And see if maybe there is a pattern or some sort of trajectory we can follow back to its source."
I agree that would be a worthwhile effort. Again with the Devil's Advocate! (grin) :
Who will fund that? Unless you mean that 'we' 'us' mere laymen can discover it by using our not inconsiderable brain power. If 'we' could------How would we accomplish that? How would we get funding?
You're a physicist and physics has some hard and fast rules (like stress, gravity, temperature gradients). The body doesn't have any 'hard and fast rules' or rather it has trillions of them, each different from the next body.
"It does seem increasingly necessary to find out for sure if the infection is alive or dead. "
A resounding YES! I've been reading, off and on, studies/articles that address that. So far I haven't found anything that have been reproducible, independently verifiable or doesn't a have a flaw in it. The 'debris' theory sounds good and Bockenstadt may be on to something.
Do you know who the author/owner of Spirochetes Unwound is?
Do you have any other studies/articles that address the dead debris theory? I'd love to read them, if you do because I've always found it imperative to read both the praise and the negative critiques of a theory.
"The body doesn't have any 'hard and fast rules' or rather it has trillions of them, each different from the next body."
Boy, you got that right! That is precisely why I like physics so much and chose to study it instead of biology! (I guess I should have chosen biology after all…?)
But maybe the effects of the disease on the body is what varies - as opposed to the causes. Perhaps the solution is not a different treatment for every different body. In fact, I am becoming more and more suspicious of that idea.
Some things work for some people and not others?
If these varied treatments really worked, we wouldn't all still be on this website looking for answers.
I have a theory about the reason why nobody's been able to name a Lyme toxin. (I'm talking about the chemical structure of the toxin - not just that there are toxins.) I think, when the spirochete is alive and in one piece, it evades the immune system pretty well...
and for the actual paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3102705/
Especially you, md2013. You'll find this study extremely interesting in your field of immunology.)
...by somehow causing an immune system reaction that is heightened, but not effective. By this I mean that the little spirochete guys sit around the lymph nodes, causing the immune system to react - but they somehow prevent specification of the antibodies.
In other words, say that the white blood cells that fight disease are the army. The army is called up to fight and then armed with weapons but they are given vague orders of who exactly to kill - such as "kill everyone wearing green".
So they go out and start firing all over the place and they hit some of the enemy, but not all and there is a lot of death by friendly-fire. This may explain the auto-immune aspect of the disease and also why the immune system fails to eradicate the disease all by itself.
I would think that the LAST place a disease would want to be is right near a lymph node. It's like soldiers hanging out right near an enemy base! What are they thinking?!?
Remember, this disease has been around a LONG time. So it's had a lot of time to evolve to survive in a human body.
My guess is that the spirochetes that hang out right outside the lymph nodes must secrete some sort of chemical that interferes with the specification process that happens in the germinal (inner) section of the lymph nodes - so that our white blood cells (antibodies) are shooting blind.
This made me think that it has more ways to discourage the immune system from killing them. Maybe they're not as toxic while they are alive, but when they die, their insides are exposed and perhaps that's the really toxic part.
The reason I have come to consider this idea is because I've had this disease my whole life - I was infected when I was 3 years old - and I was tired most of the time and in pain in cycles. I would get tired, my joints would hurt for a while and then I'd go lay down and after a while the pain would subside.
But at year 30 of the disease, I found out that's what I had and took antibiotics for it (minocycline). Six weeks into antibiotic treatment I got hit really hard with what's supposed to be the Herxheimer reaction, and all the spasms and tics that I had as a child came crashing back. I was jerking around all over the place - accompanied by unimaginable pain.
It's as if killing a whole bunch of Lyme at one time was dangerous - perhaps deadly. Maybe the immune system is aware of this bad reaction to the killing of spirochetes and only kills a few at a time.
I think the inside of the Lyme spirochete is way more toxic than the outside. So, when we kill off a large number of them at one time by taking antibiotics, the body is just overwhelmed.
Some antibiotics work by snipping the bacteria in half, thus killing it. The body then sends macrophages to eat the remaining dead pieces and pass them out of the body either by mucus, urine, feces, or sweat.
Perhaps it is simply the insides of the spirochete that are the toxins and that's why we can't isolate a particular toxin. But still, if this is so, we should be able to name the particular toxin or toxins that are reacting with our nerves!
I know that the "Herxheimer" for Lyme is more than an immune system reaction alone. Immune system inflammation and everything that goes along with fighting disease hurts but there is also an additional type of pain that cannot be explained by the immune reaction.
Maybe, after 30 years, the infection has multiplied so much (bacterial populations grow exponentially) that when the antibiotics snipped them in half, the insides were then exposed all at once causing a system-wide freak-out that has yet to subside.
About the author of "Spirochetes Unwound":
I do not know the author of "Spirochetes Unwound" and when I tried to leave him or her a comment, it didn't publish. But now that you mentioned it - I looked at the 'about' page and found an email address. I think I will drop him a line. I first wrote on this website months ago when I found the article - and it was all I could do to communicate with anyone - trying to figure out anything on the computer was really really hard for me for quite a while.
He is a microbiologist and may be able to design an experiment for us!
Just some thoughts. If anybody else out there has any thoughts on the "Lyme debris" or "Lymph nodes" experiments, please come on and chime in!
As always, great information and very useful. Yeah, for all the "newbies" to the Lyme's site (I only have been on here about four months myself), know in advance that Lyme's is a confusing, frustrating, and painful mess. Insurance companies have weighed in also, as always, not wanting to cover years of antibiotics. If you visit any typical Lyme's related website, they will give a rosy picture of how easy it is to treat Lyme's. The problem is, as in my case, often tests give false positives or negatives. I was positive on one, negative on another, yet have most if not all the symptoms, am disabled, and was bit by a tick and had the bulls eye rash that is indicative of Lyme's Disease. After a dozen years and no treatment, I am a physical and mental wreck. I was "healthy as a horse" before the bite, so I know without a doubt I have this damned disease. My new doctor admitted as much, but still re-diagnosed me with that stupid Fibromyalgia b.s. which is a cop out diagnosis much more accepted by the insurance industry. He is treating me through heavy vitamins, water aerobics, pain medications, anti depressants, anti tremor medications, etc. He knows full well the cure is likely not going to be there, and certainly insurance won't cover it and if he prescribed heavy doses of anti biotics for months to years for something the C.D.C. says only requires a two week course, then he can lose his license. Thus the underlying frustration with this disease. I would be happy to be diagnosed with M.S., anything that they will acknowledge and treat. By the time proper Lyme's research has been done and proper medications created, it will be a worldwide epidemic, of that I have no doubt. This is a big one for the pharmaceutical companies, because the disease keeps people very sick, but generally doesn't kill them, so it's a win win for drug companies. Everything is always about money these days, to think otherwise is a waste of time. This site has been a God's send for me. I have found new friends and a lot of useful information, especially on Magnesium replacement, since Lyme's strips the body of Magnesium which creates a lot of symptoms by itself. Since joining this site I have incorporated some of the information into my daily life and have a bit more energy and better outlook. Before this site I wanted to die, very badly. I used to be what one would call a "Man's man". Big guy, very tough, all star athlete, never backed down from a fight, then a little bug floored me. So, I feel that much more useless as a human being. Most days I am completely bedridden. Today has been another one of those days. Of course this makes everything worse, the pain worse, the depression worse, but what can you do when you barely have the energy to put on a sock? Suicide has been a constant thought since becoming disabled. It's like everything that made me into a "man" is gone, the drive, the strength, the fortitude, the toughness, all of it. Add to it the fact most Doctors treat Lyme's patients like they have the plaque and don't want to treat them, and add to that the bad research out there, and it's frustrating. I have seen more and more talk about Lyme's disease on hunting shows, fishing shows, etc. So the awareness is growing. Now we just need some very famous people to come down with it so real action will start. We need big time news coverage and specials. First of all we need reliable tests, so those of us who have had it for years can get the positive result and at least some treatment. The first time I was tested by the Elisa test, the positive outcome, I had already had it for well over a year. I couldn't figure out what the hell was happening to me. The Western Blot, a notoriously unreliable test, came out negative so my Neurologist labeled it "fibromyalgia", a ******** diagnosis if ever there was one. Anyway, this is a good place for the new people, there are a lot of very educated people, like Jackie, so pick their brains if you need to.
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