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Lyme is not an 'autoimmune' disease
Friends,
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.
Welcome to the Lyme wars.
This battle between the IDSA and ILADS
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.
Welcome to the Lyme wars.
This battle between the IDSA and ILADS
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.
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."
http://www.columbia-lyme.org/patients/controversies.html
"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."
http://www.columbia-lyme.org/patients/controversies.html
Please read this very important, ground-breaking research about how the Lyme Disease bacteria react with the immune system even AFTER IT IS DEAD:
http://spirochetesunwound.blogspot.com/2012/11/inflammatory-spirochete-debris-left.html
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!
http://spirochetesunwound.blogspot.com/2012/11/inflammatory-spirochete-debris-left.html
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.
"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.
As a follow on to the above, you may find this review article to be of interest:
http://www.futuremedicine.com/doi/full/10.2217/fmb.12.92
Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science
Apologies if it has already been posted elsewhere!
http://www.futuremedicine.com/doi/full/10.2217/fmb.12.92
Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science
Apologies if it has already been posted elsewhere!
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."
Hurray!
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."
Hurray!
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 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.
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:)
Don't worry, Leilajax!
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.
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!
I know zip about the pathology approach to lymph glands, but ... what was the pathologist told to look for?
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.
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.
Yes, mine came back positive from IgeneX but I was treated before I got it back. Same with babs.
I know its a pain but glad you are getting a second opinion from a LLMD. Yes you are lucky to be near so many. I am coming back to Va shortly and will go back to Dr Z.
Hugs
I know its a pain but glad you are getting a second opinion from a LLMD. Yes you are lucky to be near so many. I am coming back to Va shortly and will go back to Dr Z.
Hugs
This is not a matter of OPINION but of SCIENCE.
You're better. I'm not. Why is that?
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.
You're better. I'm not. Why is that?
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.
Well, good morning, sunshine! Welcome back!
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?
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.
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.
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.
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.
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.
Hi Jackie
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:
http://www.economist.com/node/21560559
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:
http://www.economist.com/node/21560559
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