so i have been dealing health issues for the beeter part of 4yrs now. severe fatigue heart palps tachycardia but all ekgs come back fine, as of the last 4-6 months been forgetting where i am or why i went to wherever i might be tons of muscle ticks(yes pun intended), severely stiff neck that comes and goes, muscle fatigue/weakness, bad headaches, dizzyness. i'm sure there is more but i don't have all the symptoms all the time so.. anyway i finally found a dr (a naturopath) who mentioned lyme about 1 year ago so i slowly started getting tests done as i have no medical and must pay out of pocket. he convinced me to get the igennix lyme test got the results on mon the 12th of nov. he says i have lyme though doesnt meet the cdc criteria. now i find out he doesnt like to prescribe antibiotics and wants me to do soome 2 month detox program, get checked for heavy metal toxins and treat that if needed, also remove/replace any metal fillings then and only then would begin to actually kill of the da&n spirochetes. wtf! i have lost my job my house missed out on the first year of my daughters life and now can't get antibiotics? here are the results of the igenex test:
So sorry to hear about your struggles. Your story is very familiar. You have more evidence of Lyme in your Western Blot than I do and I definitely have it.
It sounds like your ND wants to make sure you aren't overloaded with toxins and heavy metals as they can interfere with treatment. I have read of the recommendation to replace metal fillings, but I have never heard of that as a prerequisite to treatment. That seems odd to me!
Studies have shown that metal leaching out of old fillings is minute and slow. Hardly an urgent issue given your overall health right now. The process of drilling them out sends a large load of metal into the body despite the water and suction used. (My dentist confirmed this to me just recently.) This seems to me like a really bad time for you to replace old fillings.
I see a well regarded LLMD and he starts oral antibiotics right away, along with some recommendations for dealing with the herxing (detoxing). He and his PA use lots of herbals and supplements to augment prescription meds. They only start testing or treating for heavy metals if the patient isn't responding as well as they'd like. It sounds like your ND wants to deal with it up front rather than later on an assumption that it's a problem. Proactive rather than reactive.
If your ND wants you to buy a really pricey batch of supplements directly from him/her, then ask which ones you can get online, as cost is a big issue for you. Also ask which ones are absolutely necessary given your budget. Any doc who won't prioritize in favor of treating the patient is questionable.
Your biggest priority now that you have such clear evidence of Lyme is to get treated. You might need to ask this ND to recommend someone else who will treat you without preconditions. Or, go back on the hunt to find another one.
Keep us posted, okay. We know how frustrating it can be to get diagnosed and treated for this nasty disease.
Sorry for your situation. Ditto what Rico said.
My LLMD also supplements abx with herbs, she sells some at her office with no mark up, I checked, but I take an online brand she also mentioned. You need abx big time.
Have you tried applying for disability? Or if you are 25 or younger ( not fair to us older folks) there are grants I can give you info. If you don't treat with antibiotics you will eventually get worse.
Most of us have been through it trying to get diagnosed and get a real LLMD who treats. Let us know. We are here to help.
I agree with the comments above. I am sure your doc is advising what he feels is reasonable, but the first thing we all learn about Lyme is that it is largely a mystery to all medical practitioners, whatever their title, and many if not all of the approaches (whether mainstream MDs or naturopaths or whatever) are still developing and nothing is carved in stone.
The naturopath means well, but his basic approach is not something I would follow when dealing with an illness as serious as Lyme disease. Lyme is caused by spiral-shaped bacteria in the same family as syphilis, and I would not spend time or money tidying up my old fillings before I moved aggressively to treat syphilis -- and ditto for Lyme. Much of the medical community does not take Lyme seriously, so there is much figuring out to be done by us, the patients.
The positive Lyme 'bands' that you report are pretty impressive, from what I read. IgM antibodies are produced by the immune system relatively soon after an infection, and IgG antibodies are produced later, as the IgM reaction begins to taper off, but there is no hard and fast cut off when one stops and the other starts. So both readings are useful, and the bands within IgG and IgM mean the same thing, just different timing. The more "+ "signs, the stronger the indicator; "IND" means indeterminate, as in maybe yes/maybe no, which is prudent to read as positive if there are other positive indicators present; and "-" means no reaction for that band.
Here are all your IND and positive bands mushed together, with comments as to meaning, acc. to the website mentioned above. 'Specific to Lyme' means no other bacteria will produce a positive result on that band:
18kda = ++++ highly specific to Lyme (many LLMDs say if this band alone is positive, you have Lyme)
23-25kda = IND outer surface protein C (OspC), specific to Lyme
30kda = + unknown, but could be Lyme; also cross-reacts with several different viruses
31kda = + and IND outer surface protein A (OspA), specific to Lyme
34kda = ++ outer surface protein B (OspB), specific to Lyme
39kda = IND a major protein of Borellia burgdorferi (aka B.burgdorferi, which is the scientific name for the bacterium that causes Lyme)
41kda = ++ flagellin protein of all spirochetes, but not specific to Lyme (flagellin being the little whiplike tail on a spirochete like Lyme)
58kda = +++ unknown, but may indicate B. burgdorferi
83-93kda = ++ specific antigen for Lyme, probably a cytoplasmic membrane
So, I'm not medically trained, but I would get myself without delay to a Lyme specialist and get treated asap. The sooner Lyme is treated, the more certain the cure. Treatment is with antibiotics.
Also a Lyme doc would know to take a careful history and tease out whether you may have other infections that the Lyme ticks also carry about half the time (such as babesiosis, bartonella, ehrlichiosis, and a few others). These illnesses need separate testing and often different antibiotics to cure.
The sooner diagnosis and treatment are begun, the less entrenched the diseases are, and the less compromised your immune system becomes from fighting the infection(s) without antibiotic assistance.
Your doc means well, but Lyme is a fast-changing area of medicine, and not all docs are trained or aware enough to do what needs to be done.
If you need help finding a Lyme specialist in your area, let us know. Due to harassment by state and local medical boards in some areas, Lyme docs often fly under the radar, but can be found. LLMD is patient shorthand for 'Lyme-literate MD' -- not a title or degree, but just a patient-originated indicator of a doc who 'gets' Lyme. An LLMD can be any type of doc, but often the groups who would seem most natural for treating Lyme are simply not aware of Lyme and are not aggressive at diagnosing or treating (including infectious disease docs, rheumatologists, and others).
Always get and keep copies of ALL your test results, like the ones you have already had done. Sometimes in the process of getting well, changing docs is necessary, and having those old test results is very valuable to a new doc ... and sadly, doc's offices are not very good at copying and handing over later everything already in the file.
And btw, I also have old 'silver' fillings [actually mercury amalgam] and my dentist and docs said to just leave them be until later, because as stated above, removing them now releases toxic chemicals like mercury into your body (no matter how careful the removal), and your immune system is fighting Lyme like crazy already and shouldn't be asked to also take on a detox program now.
And that your current doc 'doesn't like to prescribe antibiotics' is very troubling. Lyme is, as mentioned above, in the same evil family as s******s, and anybody who wants to wait to treat syph and treats it with herbs is, imo, someone I would not let treat my dog, no matter how well-meaning. A lot of alternative docs are, imo, not facing reality when it comes to serious diseases, where the big antibiotic guns are called for.
And about not meeting the CDC criteria: an LLMD knows that the CDC requirements were designed to set the bar very high to give a Lyme diagnosis, because the CDC is not treating patients -- the CDC is tracking the spread of diseases, so they want to be VERY sure their stats are pure by excluding anyone who could possible have something other than the disease under study. That means that by CDC standards, many patients who really do have Lyme are not diagnosed with it, tho they should be. An LLMD knows that, but many docs do not.
So big points to your naturopath for sending you to get an IgeneX test, but I personally would not follow his treatment recommendations for the reasons stated above ... not to mention the cost of getting all your old filling stripped out and replaced. That's for later, in my not-medically-trained view.
The good news is that you have a diagnosis and can now figure out how to deal with it. Yeah, I know that's not a lot of consolation, but now you know what you're dealing with. Your daughter needs you, so fight on.
Let us know how you do and if we can help further, okay? Hang on, it's doable. We've all been where you are.
i definately appreciate the encouragement. so first and foremost thank you all for that. i saw quite a few posts saying based on their personal experiences it looks like lyme one question i have is the lack of IGG + hits. based on my own personal observations i think i have had this for at least 4yrs possibly more so why wouldn't the IGG be + and the IGM be IND or neg? i have been doing alot of research in the last 1 1/2 to 2 years and understand that well lyme is very difficult to understand.
also i tested positive for ebv but very very low count i only mention because i read that it can affect certain bands on the lyme panel. and as far as finding a new doc the biggest issue is i am completely out of money in the last year i have sold everything i had of value been homeless since july and borrowed so much from family/relatives that it's really not an option anymore. sorry if this is sounding like a poor me post not at all my intent i just don't know were to go from here. i had an appt yesterday with well the closest thing i have to a family doc or whatever. and he was willing to consider hiv, and other std's, anxiety and is referring me to an endo to look into cfs but refused to consider lyme even with the igenix results in hand so...i am by no means quitting not inmy nature even if i have to learn how to make antibiotics ill do it. just very frustrating as i'm sure you all know. btw i am in washington state so any info on other possible docs i could try would be sppreciated.
"one question i have is the lack of IGG + hits. based on my own personal observations i think i have had this for at least 4yrs possibly more so why wouldn't the IGG be + and the IGM be IND or neg?"
The tests are very imperfect. Not just a little, not just sometimes, but often and sometimes to a great extent. The test is measuring your immune system reaction to the bacteria, and human immune systems are not set up over all to fight long-lasting infections, because most of the bacteria we as a species have encountered over the millennia have a fairly short reproductive cycle, so our immune systems are set up to trail off pretty quickly on the assumption that the bacteria are all dead, in that they are susceptible to antibiotics when dividing. More frequent dividing/reproduction, more opportunities for the immune system to kill the bacteria, the faster the bugs are dead and the immune system goes back to sleep.
There are a few exception, like tuberculosis and leprosy (Hansen's disease), which have very slow reproductive cycles, which is why medicinal treatment is needed, because the immune system just doesn't hack it all alone.
So the first round of reaction from your immune system are the shock troops, IgM antibodies. After those fade, the longer term IgG antibodies kick in, but our immune systems are not attuned to long last (chronic) infections, of which Lyme is one. So your immune system may just give up and quit making antibodies after a while.
Another aspect of Lyme is that it has the ability to hide in the body in so-called 'biofilms', slimy shields that protect the Lyme bacteria from detection by the immune system. And what the immune system can't find and can't see, it can't kill.
And a third aspect is: these tests are not very accurate. Docs have come to rely on them as the last word, when what they should be is simply another data point. Absence of evidence is not evidence of absence of the bacteria. As in: just because you can't find your shoes doesn't mean you don't have shoes, and they just may be under the sofa and not readily visible.
There is another test offered only by IGeneX (as far as I know), called PCR, which looks not for the immune system reaction to Lyme bacteria (i.e., an indirect indicator of infection) but instead looks for bits of Lyme DNA in your blood (a direct indicator of infection).
But setting the tests aside, a good and knowledgeable doc would assess you based on your history and symptoms, not just test results. When it comes to Lyme, orthodoxy rules, as you have found out. Finding a good doc is the the single most important thing you can do.
or whatever area you can get to, that may help you locate a doc.
Also send an email to
contact [at] ILADS [dot] org
and tell them where you are located. They may be able to send you names of LLMDs near you. ILADS is the main voluntary association of Lyme specialists (LLMDs, not a form title, just patient slang, 'Lyme-literate MD).
We don't post LLMD's names here in the open, due to harassment by local medical authorities who don't 'believe' in Lyme.
You can explain your financial situation and see if the doc can provide a discount or payment terms, and of course when you are back on your feet and gainfully employed, remember to go back and pay the doc even if it's not expected that you do so. It would help the doc treat someone else in your current situation.
Best wishes to you -- let us know how you do, okay?
I reliped to this in great length but the website refused to let me post. So I'll be brief this time.
First, does your naturapath actually have a licvense to prescribe antibiotics? He's probably not prescribing them because he can't.
Next, mercury makes some bacteria mutate and become antibiotic resistant. Borrelia do NOT becaome antibiotic resistant in the presence of mercury. Regarding those that do, they mutate in 3 days and removing mercury after that will NOT change them back again!
I've read more research about mercury than most docs and basically, there is on proof that low levels of mercury are really harmful. I have 81 times the WHO safe max and I am fine..... except for having lyme disaese.
They cannot even agree on how to measure it and tehre is definiteively no test that proves how much is in your body ... only how much is being excreted from the body - NOT the same thing.
The symptoms of real mercury poisoning are that you can't stop drooling, you twitch, your skin turns into smething like potato chips and falls off in huge pieces, and you stagger about with no muscle coordination.
Mercury poisoing is high trendy and lucrative among naturapaths, homeopaths, quacks who promise to cure autism, and a bunch of other people who need money and aren't real doctors.
As Jackie said, you need treatment for lyme because that is what you have, you have a blood test that proves it, and now you need to find an affordable doctor who will prescribe you antibiotics to tackle it.
Till you can, if you literally cannot afford another doc right now, I'd make a start with some of the key nutrients you are no doubt deficient it, and PERHAPS some generic antibacterial herbs.
I want to know what the others think about my herbs idea...
I know they'll agree about the nutrients.
I am on herbs as a supplement to abx. I think it's better than nothing for sure.
In addition to herbs, a magnesium supplement is good as is vitamin D and vitamin B12. Vitamin C and the list goes on.
When I lived in Texas where "Lyme doesn't exist" I was able to get them to put me on doxy for my Bart's lesions because doxy is used for skin conditions. I herxed big time from a low dose of doxy.
If you have a skin condition you could ask for doxy and they wouldn't know they were treating Lyme. That is what I had to do until getting to an LLMD in FL. If not, I guess herbs is a good starting point.
That doxy idea is a good one but you MUST buy a herb to take with it called artemisia. otherwise, the doxy makes the bacteria forms cysts . they go into hiding but they don't die.
With your memory you need choline I think, I had terrifying memory problems but on that I'm fine.
You Definitely need magnesium - high dose
I'd also take a good multivitamin and a vitamin B complex
Also take a very high dose probiotic, this is the single best thing you can do to help you immune system..
I am also sure you are terribly glutatione depleted. That's an enzyme that removes the toxins produced by lyme bacteria so we all get low on that.
Your body uses lots of it when you have any infection at all.
To raise it you need all this:
Alpha lipoic acid
vit A C and E
N acetyl cysteine
these are indispensable every day.
When I get a flare up I also take:
milk thistle which pushes your body to make more glutatione.
I also sometimes need actual glutathione tablets too. You either need to buy liposomal glutatione or I just recently found Jarrow reduced glutatione tablets which are wonderful.
The symptoms of low glutathione you listed are:
severely stiff neck that comes and goes,
I used to have these sympotoms all the time and it was so awful I sometimes secretly wished I would die. When they come on nowadays I take glutatione and they go away very fast (in an hour).
thank you for the responses and ideas, for the last year or so i ahve been doing the following strict gluten free diet as well as organic as much as possible also for the last 3-4 months doing the juicing thing, i also have cut out coffee and caffeine as well as alcohol for a year. as far as supplements i have been on vitamin D, garlic, magnesium and a general multi for about 7 months also taking a probiotic that naturopath recommended for about 5 months. i talked to my naturo earlier today and he can prescibe antibiotics but his concern is the herx reaction and thats why he wants a detox as well as immune boost regimine to occur before starting either antibiotics or any herbs meant to kill the spirochetes. also had a seperate question not sure if i should stsrt another thread or not but, as far as the coinfections are they just as difficult to diagnose or are the tests for them a bit more reliable?
also a side note. words cannot express the responses you all have given having someone, anyone to talk to who has been through this or is still going through it is helpful in it's own right. so thank you. : )
You're very welcome for any help we are able to offer -- it's bad enough being so ill, and feeling disconnected from whatever the medical world is up to just makes it worse. So we do understand. It's our little revenge on Lyme to help other people fight back. :)
About coinfections, the diagnoses for some of them are easier to nail down than for Lyme. Lyme's ability to hide in biofilms where the immune system cannot see them is one of the tricks that help them elude treatment, and their long reproductive cycle helps them also avoid getting wiped out by the usual couple-of-weeks of antibiotics that in other infections are sufficient (except for a few infections like leprosy and TB, which like Lyme have long reproductive cycles and therefore fewer times when their cell membranes are disrupted to allow the antibiotics to hammer the bacteria into oblivion).
The most common co-infections among us here seem to be babesiosis (similar to malaria), bartonella (aka cat scratch disease, which shows reddish streaks on the skin, among other things), and ehrlichiosis (which often has a spotted appearance with tiny hemorrhages under the skin. There are a few other co-infections, but these are the ones I see mentioned most often here.
Each of the co-infections needs different tests, and a wise Lyme doc will question you closely to create a differential diagnosis, teasing out from the mass of symptoms the most likely other infections you could have. About half the time, Lyme comes with a bonus co-infection or two. The co-infections almost always need separate treatment from Lyme too, because the organisms don't respond to the same antibiotics. A wise Lyme doc knows all this.
I had babesia along with Lyme, and later got another bite with Ehrlichiosis. The treatment for babesiosis is the same/similar to that for malaria, and it's generally a straightforward cure, given the right meds for the right length of time.
Bartonella I didn't have (knock on wood), but it is a bit trickier to treat. Others here can speak to it, and you can search this site for 'bartonella' and pull up others' posts on the topic. It's a doable cure, just not as straightforward as for babesia, to my understanding.
Ehrlichia responds to doxy, so I read, but I don't know a lot about it.
You can go to ILADS [dot] org and look for Burrascano's treatment guidelines, as well as just search the site itself. It's a sprawling website that's been expanding for a long time, but don't get overwhelmed by it. Just read what you can handle for now.
The most important thing is finding the right doc who understands Lyme and who fits well with you personality-wise. I don't need a doc to be my buddy, but I do need one who will take me seriously, and sometimes that's hard to find the first try.
Some docs believe in vitamins and supplements, but others don't. I personally found vits/supps to be very helpful, but my Lyme doc wasn't the one to suggest them -- it was another doc altogether who took a broader view of illness and recovery. Each of us has followed a different path, and the trick is to stay nimble and change course when warranted.
It is doable, and very much worthwhile to pursue.
Thanks again for your kind words for us here -- we know what you're going through because we've all been there or are in the process of getting out of there! Stay in touch, let us know how you do, okay? Best wishes -- J.
You are welcome. For me, and I am sure others, we don't want others to suffer the way we did.
Yes I have Lyme, Babs and Bart's and Bart's is much worse. Most of my Babs is gone or reduced.
Ditto what Jackie said.
Glad you raised co infections as I meant to tell you as soon as I read your original post that your heart thing is very likely caused by Chlamydia pneumonia.
Basically you feel as if your heart is beating too hard, even though often it's not necessarily very fast (though it can be). It's as if it's working too hard to pump the blood round. With Chlam p, there is no heart test that shows up what is going on, they all look normal.
This heart thing always flares up when there's low presure (when the weather is changing to stormy and is looking overcast and changeable). I spent a month in a lyme clinic in Germany adn all of us with chlam pn felt rotten when the weather did this.
Unfortunately the blood test for chlam p has a very high rate of false negatives like the lyme test so you coud gets tested severa times and get a false. Also, it is horribly difficult to cure - you need combined antibiotics for months or years.
I think your doctor is being wierd about the herx issues. Your doctor should know how to make it go away.
I've had 2 monster herxes but my doc got rid of them both in under 7 days. They either use painkillers and detoxers (mainly the glutatione I mentioned) if it's mild or, if it's major, they cut down your dose for a little while then build back up again slowly.
yeah i think part of the problem with my naturopath is he is trying to become lyme literate so in a way he is learning to treat it just as i am learning to well i guess accept that i have it? and the heart thing generally what is occuring is my hr will ramp up then down the way i describe it to drs is if you ever owned a car that didnt idle correctly so my hr will be say 68 or 70 then jump to 110 then back to 83 then up to 99 and back to 75 and so forth. occasionaly i will get a hr of 125-135 that will just stay there for hrs. i have been in the er hooked up to all the monitors and they witness that it stays up there for 4-7 hrs straight the drugs they give to lower the rate have never had an effect but according to the machines i dont have an actual arrythmia or that electrically my heart is doing what its supposed to just too fast i guess. for the longest time i was told it was anxiety tried 3 or 4 anxiety meds none of them had a positive affect of the symptoms so...ill look into that chlamydia thing never heard of it before. thanks and i hope everyone has a symptom free weekend
Wow... just wow. Have you tried Samento/Toa Free Cat's paw? It's been a wonder for me and my mother. Really helps the recovery time in between the awful. With your symptoms and considering you can't get the normal treatments, I'd suggest starting using it. I get mine in gross from a seller on ebay since it's like... 30 dollars a bottle and they sell it for VERY reasonable. Here is a link... try it if you haven't, it might help. Good luck sweetie.
wishing you luck on your recovery..
just a thought... financially....sometimes free health clinics have excellent MD Dr.'s they care about the community. perhaps take your tests to them and maybe it will get you some results and prescriptions to start.
my man had lyme but caught it early ..he had the big rash and fever ..his regular MD is good and gave the doxy for a month... this was a year and a half ago and he is fine..
Crikey i didnt know that in my bloods i have high titer still for EBV 98 when it should be less then 5, but the titer is showing it is NOT ACTIVE. I have been told i could have Lupus, but I can not seem to get a firm diagnosis. Also last blood tests showed rheumatoid factor was up.
Also I had CMV, which was still showing high titer when it was not active, i believe it was 120. It should have been near to zero. I also have aspirilligis lol....
I've sometimes had high titers for EBV, HHV6 and one other I can't rememebr right now. The levels in blood don't seem to correspond closely with symptoms. I think this is somethig to do with lyme messing up our immune systems.
Lyme can make a whole variety of things go up and down, almost randomly. That includes virus levels as well as rheumatoid factors, blood sugar, hormones, enzymes, etc. My creatinine has gone up and down, even separately from how many meds I am on. So has one of my thyroid levels. My latest thing is a high % of eosinophils. But while my liver was swollen and hurting last year, my liver enzymes came up normal. Go figure.
Don't worry too much about something unless it is high (or low) enough to require attention and there is something that can be done about it (unlike the virus levels). Treatment for chronic Lyme is not a short or easy path.
Speaking of virus levels, has anybody heard of taking anti-viral meds as part of Lyme treatment?
speaking of chronic lyme. i'm still a bit confused on what it is exactly. from what i have read it seems like chronic lyme is where someone at some point gets diagnosed with lyme gets treated but then symptoms come back? so, would i fall into this category having never been diagnosed and therefore never have been treated for it? or am i just an examle of long term undiagnosed lyme? doesn't really change what i need to try to get done...just curious i guess
I don't know that there is a hard-and-fast definition of 'chronic' Lyme ... but rather it's a loose term to apply to those who have been infected a relatively long time but either didn't know it or got inadequate treatment and still have either episodes or constant symptoms.
The other end of the spectrum is early-stage Lyme, shortly after the initial infection, when the illness is most susceptible to treatment. That's why getting to a knowledgeable doc quickly is so important, because the bacteria haven't yet burrowed in where medication has difficulty finding them.
There are, I suspect, many people who have been infected but their immune systems are able to fight it off or keep it to a low roar, until another illness strikes (or a Lyme re-infection occurs, since there is no immunity after having had it once), and then the immune system can be overwhelmed trying to fight on too many fronts.
It doesn't turn on whether you were previously *diagnosed* with Lyme, but rather how long you have been infected. Lyme is a mysterious devil, and there is much still being learned about it. It is a spirochetal bacterium, which is the same family as syphilis, and back in the day before antibiotics, a syphilis infection (after a sometimes-seen 'chancre', or initial sore) would go underground and then years and decades later sometimes cause dementia.
Lyme is easiest to kill in the very early stages, which is why finding a Lyme specialist quickly is so critical. NonLLMDs usually prescribe a couple weeks of doxycycline (at any stage of Lyme) and tell you that any remaining symptoms are 'post-Lyme syndrome', meaning that you have the symptoms of Lyme but are not really infected, due to the immune system over-reacting to a now-dead infection. Riiiiiiight. That is so counter-logical I don't know how docs can say it with a straight face. LLMDs will treat at any stage, but nonLLMDs may try to treat 'chronic' (or 'late-stage') Lyme with steroids, which is the exact wrong thing to do in a bacterial infection like Lyme, because steroids suppress the immune system, therefore no further immune defense against Lyme.
Being diagnosed and treated early is important because later treatment is longer and less certain in its curative effect. 'Chronic' Lyme just means either previously untreated Lyme or inadequately treated Lyme.
I had the same question you did about "chronic Lyme," wondering how a doctor could say it didn't exist when I'd had it for six years and never been treated. Clearly I had "chronic Lyme."
Those words are loaded, thanks to the controversy in the medical world over everything to do with this disease.
Eventually I figured out that the doctors who follow the IDSA and CDC guidelines about Lyme view "chronic Lyme" as a condition of people who were treated already but still claim to be infected. They insist that the standard treatment works every time and ongoing symptoms are either "post Lyme Disease treatment syndrome" or something else, some unknown condition with no name and no cure. They are adamant that ongoing symptoms are not caused by ongoing infection.
According to these docs, you personally have Late Stage Disseminated Lyme Disease, assuming you test CDC positive on their two tier testing. If you don't, they'll say that Lyme is not causing your symptoms.
I have avoided using the term chronic Lyme for myself, as to me, it implies someone who is still symptomatic after treatment. I am still undergoing treatment with the full intention of a complete recovery.
thank you for the responses. another question and a bit of a rant (sorry). question: does everyone have a herx reaction? or is it more of a person to person type thing just as symptoms can vary soo much from person to person. rant: i really don't get why it is so difficult to get some antibiotics. back in oct my daughter got sick for the first time (she is only 14months) anyway my fiance called upset saying shelby was not happy and had a fever etc... so i met them at the er the doc said its probably just an ear infection and gave 10 or 12 days of amoccillon (not sure on speeling) without confirming bacteria, and i have a friend who has been on antibiotics for acne for years. dunno like i said just a rant. everyone have a good night. and hope you all have an overnight recovery.
I think the herxing is an individual thing. Friends tell me most herx at first and some don't but when you feel bad its actually good. Your body is reacting to the die off of the critters as toxins in your body that you have to get rid of.
Rico explained it perfectly above, most doctors follow the CDC or IDSA views that Lyme can be treated with a few weeks of antibiotics but most of us have to take long term antibiotics and therefore see LLMD or Lyme literate docs because they understand it takes a longer time.
anyone tried coloidal silver? read about it on a survivalist forum unrelated to lyme but... thought i'd ask. also looking at aquarium antibiotics apparently they are the same as human antibiotics but don't need a prescription. haha pretty sad anyone would have to even consider that.
My doc has expressed real concern about people using colloidal silver. Doesn't it turn your skin blue?
I have heard of people getting veterinary antibiotics to treat their Lyme, because they are cheaper. Self treating without knowing how is risky, though.
I think your rant about antibiotics is valid. The IDSA encourages doctors to hold back on prescribing antibiotics unless they are sure they know they are treating a bacterial infection. They are concerned about the drug resistant "super bugs" that are showing up.
Unfortunately, this has a different effect of allowing some people to die of untreated bacterial infections that were mistaken for viral infections. There was a highly publicized case of a little girl in our area who died of a strep infection after ER docs tested her for it and the result was negative. They said No to antibiotics until it was too late because they didn't believe she had a bacterial infection.
In reality, a drug resistant bug proliferates in a person who takes INSUFFICIENT antibiotics for their infection, and then spreads those bugs to other people. But from a public health perspective, it is the over use of antibiotics in a population that results in some people stopping their meds too soon that results in drug resistant bugs.
It is counter productive for a doctor to skimp on abx for a particular patient, such as prescribing 10 days instead of 14 days. That just helps create more super bugs in the cases that needed 14.
I had a week of a strong penicillin when I first got sick with Lyme and coinfections. I had no idea what I had, but felt better within a day of starting the meds. My symptoms went away, so I didn't think anything of it. Assuming the easy-to-kill bacteria were wiped out in that week, I think my infection now consists of the harder to kill bugs.
What I find laughable is the argument against treating Lyme patients with long term abx because long term abx are "dangerous." I never hear that word associated with a one year abx treatment for Q Fever or TB or MRSA or even acne! Why can't they just inform the patient of the risks and let the patient decide? I imagine most patients would choose the "dangerous" antibiotics over the misery of Lyme Disease.
Colloidal silver (CS) is something I'd approach with great caution. I just searched online for
colloidal silver lyme
and got quite a few hits, a number of them positive. I've also seen photos online of people whose skin turned blue/grey from taking.
I haven't done enough to understand by what mechanism CS is supposed to act against Lyme, and I would be very sure to read ALL the literature out there about both about effectivenes AND safety/side effects, pro and con.
I don't think, based on what I've read, that I would try it, since I'm pretty much an antibiotics kind of person.
i completely agree i would much rather get antibiotics from a doc but it seems that isnt going to happen anytime soon. and i guess im being a little impatient but... and the coloidal silver thing i want to say my naturopath had even mentioned it dunno. thank you for all the response btw
colloidal silver ills various antibiotics, but specifically for lyme, you'll get better results with herbs.
You cannot take much colloidal silver as silver is toxic in large quantities.
Teasel is the number one herb against European strains of lyme.
You also need artemisia to bust the cysts.
You can take these very long term, for life if necessary.
random update i guess haha. oddly enough for the last week or so my most diruptive symptom of heart palps and tachycardia has decreased alot yay! but it was replaced with even more severe fatigue and strangely my knees for the last 4 or 5 days will feel a little sore so ill sit down and notice they are bright red and radiating heat but it only does it for a few hrs then goes away odd. have an appt tomorrow with naturo talked to him earlier in the week and explained i couldnt follow his ideal treatment plan he agreed to start killin the bugs but sounds like he wants to use herbs instead of standard antibiotics. still want antibiotics but killin bugs is killin bugs so hopefully somthin will happen soon.
No, definitely don't tak abx without a doc guiding you.Amox alone may not be the right thing, and 2 weeks of any antibiotic isn't enough to do anything useful against lyme anyway.
I know it's really frustrating but doing it yourself is too risky. :(
ok update time : ) just got home from naturopath he has started me on samento, banderol and a crazy expensive garlic. so 300 dollars later i at least have a first attempt at treating this junk. the plan is to try these for a month and if nothing happens then switching to doxy. so i guess i just wait and see. anyone used or tried any of these?
When I had to stop prescription meds to let my kidneys rest, I was put on Samento and Banderol. They are the two most common anti-Lyme herbals that I have heard of.
I did end up using a different brand of Cat's Claw than Samento. That was the first time I had a herx on herbals so I know it worked. (I had read an article explaining that while TOA free Cat's Claw was more effective, the same benefit could be seen with a higher dose of the regular Cat's Claw. I just followed the directions on the bottle.)
random update i gues, i started the samento/banderol stuff 4 days ago and yesterday and today my heart palps, tachy and general chest pain seems a little better. the frequency, severity and duration has decreased at least. also fatigue is a little better not great but enough that i noticed. knees, hands, shoulders and back still hurting and headaches still there. not sure if i am gonna say the herbs are helping or if its just a coincedence but... time will tell i spose. going to cardiologist tomorrow to do another holter monitor i'm sure nothin will show up but worth a shot i guess. no sign of herxing, which seems to be making my naturopath concerned(?). he still seems unsure about the lyme diagnosis. i can definately say his seeming lack of confidence doesnt help at all and has me questioning if it really is lyme. annoying.... anyway hope everyone had a great thanksgiving g'night
Not everybody has herxes. And herbs don't usually pack as much of a punch as abx, so you're less like to have noticeable herxes. (Except A-Bart...I've heard of significant herxes on that one.)
With four years of illness, you could be looking at a year or more of treatment, so think of it as a marathon, not a sprint. Progress can be frustratingly slow sometimes. Sometimes it's even two steps forward, one step back. Just look at the overall picture to see if you're improving.
I even had brand new symptoms show up months after I started treatment. That was really annoying. I was loaded up with antibiotics, how could it have moved to a new place?? Such is the nature of Lyme. You have to keep up the relentless pressure on it to beat it into submission, or like a chained attack dog, it will lurch forward if you give it slack.
It sounds like your NP is learning by doing. If you are confident that it is Lyme, he'll feel better. I know, it should be the other way around, but it is what it is.
We recently saw someone post here about Brucellosis. While usually associated with cattle/dairy and dogs, it is also tick borne. It has almost the same presentation as Lyme Disease, and can be as difficult to treat. If you have doubts about Lyme, you could always ask to be tested for Brucella.
question aboot herxing. most of what i could find inline said symptoms of a herx was stuff like fever and tiredness and basically flu like stuff. i seem to be just experiencing the i guess lyme symptoms worse than before i started the treatment plan. so my question is can a herx reaction just exacerbate whichever symptoms that i have already been experiencing?
My herxes have been mostly an intensification of certain Lyme symptoms along with fatigue, brain fog, and mild headaches. Sometimes I just feel really crummy on a new drug or an increased dose. I haven't had any fevers.
I have had extensive and severe rib pain thanks to Lyme, and when I had my first Bicillin shot, I had horrible rib pain for the next couple days. I didn't have big herxes with oral abx until Biaxin and then also with Clindamycin. Both had a narcolepsy like effect on me about 18 hours after the first dose. I felt like I'd been run over by a truck for a day or so.
My herxing in the last month on Malarone for Babesia has been the worst of all....significant air hunger, breathlessness, fatigue, and malaise.
ok yeah that helps, i have been on the herb stuff for like 9 days now and the first coupple of days i was feeling a little better then i started upping the dose per my dr's orders and now it's weird my fatigue is better but everything hurts like a crappy cold or flu where everyhting aches and is stiff and horrible headache again and just gnerally out of it but fri and sat i felt ok enough to get out of the house so i went to cabelas and just walked around for a couple hrs then hung out with my finace and daughter last night and today i feel like i got run over by a truck. hopefuy it is herx i guess since that means bugs are dying, right?
Yes, herxing is from a die off which is what you want.
So I was told by lyme friends when i first herxed that you need to feel worse to feel better. A worsening of symptoms. My herxing has gotten easier with time. I had some new things happen to me with a herx.
My LLMD took a blood test to see how my body naturally detoxifies. I came out, that I don't detoxify well so I take meds for it, recommended by Burascano. You could also take activated charcoal which absorbs the toxins from a die off.
ok this is awful! i have been to the er 3 times i think in two weeks for this chest pain tachycardia dizzyness blurry vision shortness of breath and horrible headaches. i just got the prelim results of my 24 holter all it showed was sinus tachy possibly inappropriate sinus tach. does any of this seem to match up with anyone elses lyme experience? btw those arent the only symptoms i have just the ones that freak me out i guess.
Since I am not medically trained I can only tell you my own experience and I have had all those symptoms. I had to go on medications for the tachy, and the blurry vision has gotten better with time but I still have it.
Did they give you any meds or tell you anything to do for it?
My daughter at 13 started having tachycardia, chest pain, air hunger, dizziness and headaches. They gave her an ECG (abnormal) and put her on a halter monitor. Her button pressing to mark her pain correlated with tachycardia. Sent her for an echocardiogram and a cardiac stress test which both came back normal....very frustrating. She was never given a diagnosis.....well we know what it is now.
well thank you for the responses. as far as rib pain not surre if that is my issue as most of my pain is the center of my chest and upper abdomen. very frustrating, sometimes gi cocktail helps sometimes it doesnt nitro has helped before but not always either. i guess my biggest concern is wether it is heart pain like angina or somethin else, and so far i can't get any dr's to consider checking my heart beyond an ekg. on the one hand it makes sense as far as my age, but i do smoke and used to have a horrible diet and heavy drinker and now havent been able to exercise for the last 4 or 5 months. but the lack of exercise has been due mainy to the tachy and not chest pain anyhow guess i'm kind of venting at this point. lol
so i guess i'll mention the other stuff. i have been on the samento/banderol stuff for 14 days now and aside from the chest pain and all the stuff i mentioned previously. my muscle twitches and ticks have been almost nonexistent, the joint pain comes and goes instead of all the time, my focus is alot better and i'm not mispelling words as bad or using words incorrectly etc... my fatigue is better if nofor the chest issues i'd probably feel pretty good. so, dunno if it's coincedence or if the herbs are helping.
Also be aware that Lyme bacteria like to live in places where the immune system can't see them and therefore can't destroy them.
One of those hidden places is cartilage, which has relatively low blood flow compared to say muscle. Your chest discomfort may be because of the cartilage that loops from the ends of your ribs to the breastbone (sternum) being irritated by Lyme bacteria -- and your knees too, but I'm NOT medically trained, so this is just a thought for your consideration.
Are you taking magnesium supplements? Lyme bacteria are, so I read, greedy users of magnesium (Mg) in their reproductive process, and lack of Mg can lead to muscle twitches, cramps and aches, as well as other misc. misery. Might have mentioned this before, but taking Mg supplements (any variety ending in "-ate", like Mg citrate, aspartate, malate, etc) are said to be the most absorbable. It's also very soothing generally. I still take it, since the American diet is said to be low in it.
Be sure if you take supps that you always tell your doc (sometimes they forget to ask) what it is you are taking and how much each day or how often if not daily. Supps can change your symptom array, and that can throw off the doc's diagnosis and treatment plans.
I have had chest pain, too, mostly in the area of my sternum. I have also had terrible abdominal pain, which stumped multiple mainstream docs. I think I also had Lyme in and around where my diaphragm connects to my ribs. And my stomach hurt for a year. All known Lyme symptoms. Sorry you're herxing so much. If your shortness of breath is accompanied by sweats, you might also have Babesia. After nearly two years of chronic shortness of breath and air hunger, we finally figured out that I have Babesia. I tested negative three times, so testing was not helpful for me.
Robyn - Very interesting to hear you all have rib pain! I have had very bad and persistent rib pain. After over a year, I am now down to chronically sore ribs. It is not a very common symptom here in CA or even in the US from what I have read from others. I wonder if it is more common in Aussie Lyme? My collection of symptoms looks more like Borrelia Garinii, a European species, which I read (on Dr. Mayne's web site) has been identified in Oz.
thanx for the responses, yes i have been on magnesium for about 8 to 10 months now. i just got home from appt with naturopath and i am starting doxy tonight or tomorrow depending on when the paharmacy gets it filled. so i guess we shall see what happens on those.
I don't recall if anyone above has already mentioned the need for cyst-busting meds to crack the door open so doxy can get to the Lyme bugs to kill them. Doxy seems to work in the earliest stages of Lyme before the bacteria are able to hide themselves in a cyst form that doxy can't break through. Did your naturopath discuss that aspect?
Ah, got it. My Lyme doc is an all-antibiotics-all-the-way kind of guy, so I don't know much about the herbal approaches.
If you're head is clear enough to do reading on the topic, roaming around the web (with a skeptical eye) can provide a lot of information on these things, always with the caution that some percentage of it is wrong, misleading and/or dangerous. ... then again, docs can be that way too sometimes. heh.
yeah i think since my doc is a naturopath and not specifically an llmd he tries to do everything naturally as much as possible. out of curiosity what antibiotics are capable of busting up the cyst forms? i havent stumbled onto any mention of that before. and yes having so much "information" available i.e. internet can be good and bad regarding any health concern too easy to get misinformation.
But in the larger picture, Lyme treatment is not a do-it-yourself project. It's a complex disease with a number of other diseases (co-infections) that often come along with Lyme. Each of these infections, Lyme and the co-infections, need different meds and combinations of meds.
It's nice that the naturopath is trying to help you, and I know it's expensive to see an LLMD, but Lyme isn't a case of the flu that will eventually go away by action of your immune system. Lyme can have real, serious, long term effects, and the longer it goes untreated, the harder it is to get rid of, and it can have long-lasting effects once established.
yeah i wish i could figure out a way to get the money to see a llmd but for now i can't do it. however i know my naturopath consults with a couple of local llmd's in my area regarding my case so... hopefully somethin will start to help.
I hear you -- hope it goes well -- keep us posted!
(It was mentioned in the messages above, but Burrascano's treatment guidelines are worth reading on the ILADS website, for both you and your naturopath. There is no hard-and-fast, one-size-fits-all treatment approach, since much depends on what co-infections you have and how long you've been infected. Combine that with the individual variations in immune system function and the different strains of Lyme, and the number of variables to account for gets big pretty fast. That's why the different treatment approaches and so-called protocols vary -- partly it's the still-developing understanding of Lyme and partly it's the interaction of various infections, strains of those infections, and your own immune system.)
Some co-infections like Bartonella, give many people, like myself, neurological problems, Babesia, which is a cousin of malaria, gives you other symptoms. For me I had air hunger and the sweats with a dry cough.
If you read Burascano's guidelines like Jackie suggested you may be able to pick out a co-infection that you have then you might start with herbal treatments.
Burascano recently spoke at the 2012 ILADS conference and says that almost everyone with Lyme has a co-infection.
been a while since i posted anything. i have been with an llmd since the middle of jan was put on zithro and for about a month and a half was doing pretty good. but hit a wall. as of late my llmd thinks my major problem is bartonella. so about two weeks ago dr added rifampin to the mix. holy crap awful herxing. has anyone here successfully treated bart? i am supposed to take two rifampin a day but can only tolerate one pill every other day. its definately frustrating since i was feeling at least a little better and now that we added the rifampin im back to feeling horrible most days. anyway enough whining hope everyone else is making headway in their treatment.
@jackie, yeah my dr said for now take one pill every other day is fine. when i initially told her about the reaction i was getting she thought it was just a reaction to the med. but since the majority of my symptoms have been cardiac related and chest pains and dizzyness i told her i believed it was herx and so she agreed to continue but to monitor reactions very closely.
I'm glad your doc is in the loop! Sometimes people start freelancing in how they reduce or change their meds, and that way lies (more) misery. Hang in there -- it's definitely a battle worth fighting against the bugs.
Well thank you for the responses. And its nice to hear when anyone successfully treats any of these darn things. If I'm being completely honest the last few days I have been being a wuss with the rifampin because the reaction is so bad but after some self induced motivation have my mind back on track to keep going with it. Haha. Also wanted to mention ashwagandha it has helped tons with my energy levels.
I had two separate trials of Rifampin and each one was horrific! I refused to take any more. (That's just me----some people can stand it.)
About colloidal silver:
This is from the National Center for Complementary and Alternative Medicine (NCCAM) about the use of colloidal silver:
Another article by Tom Grier ("Tom Grier, M.S. Mr. Grier, a microbiologist who is a Lyme patient, writes about the complexities of Lyme disease in a simple, down-to-earth manner easily understood by all.")
I am so glad you're seeing a LLMD! That's great news! I started out with azithromycin, too, but wasn't on it for very long. I think it's a good starter drug to avoid heavy herxing, but it's not a cure. As soon as you plateau for a while on any drug, then it's time to switch up to a different one.
Good call by your doc on the Bart. I tested positive for it and started on Rifampin a week after the Zith. I didn't have much herxing on it although my anxiety began to get better. I really improved when I switched to Levaquin. It finished off the Bart for me. I think my case of Bart wasn't that bad.
My Babesia, however, has been rather nasty. I have definitely experienced chest wall pain as part of my herxing. Right this moment, I feel uncomfortable "pressure" on my sternum. I've had some sharp pain, too. When I had a nasty symptom flare of Babesia, my tachycardia bounced back up higher than it had in at least 8-10 months or so. I looked it up and Babesia can indeed cause heart irregularities. I was down to one of my beta blockers every day and a half, but now I am back up to one a day. I also notice my heart rate is irregular when I don't feel good. It isn't arrythmia, it's just inconsistent beating, such as a few strong beats, followed by a 'normal' beat or two, followed by a few weak ones, and then big strong ones again. The vertical bar on my finger pulse oximeter shows how variable it can be.
Are you taking a beta blocker. It definitely helps me. That and magnesium help soothe my irritated heart.
so im not sure if i should ask here or start new thread but ill try this first. who here had bartonella and successfully treated it? what worked? i saw my llmd a week ago and out of curiousity asked about what i thought were stretch marks turns out dr is confident they are bart rashes wich since two weeks ago i did notice new ones and that also coincides with me moving up to the full dose of rifampin. the crappy thing is the majority of these "stretch" marks i first noticed when i was 16 but just thought it was from working out, sports etc... anyway im kind of bitching at this point. my tachy isues havent ben happening much only once or twice a week and not at all as bad as before but brain fog is horrible and chest pain, well pain in general but...ughh yeah so any successful stories would help im just feeling really beat up right now. hope all are doing well thanx
I think that's a question worthy of a new thread -- "Successful bartonella treatments to recommend?" -- or something along that line.
It does take a while sometimes for infections to be identified, so as much of a drag as it is to be diagnosed with something you would just as soon not have, it's a good step to at last know it -- because the next step is getting rid of it. Points to your doc for paying attention and responding when you mentioned the marks.
Others here who have had bart can comment more specifically, but I send you good wishes overall -- you're making progress.
It is a crying shame that we are all dealing with Lymes and it is a constant scramble to figure out how, what, where and when to deal best with this horrible disease.
The worst part is that if one doesn't have health insurance or money to help themselves- it can be debilitating!
I have a book that may be helpful... It's called Lyme Disease in Australia.
By Nicola McFadzean, N.D
It is great how it really makes sense of it all and ways to treat it through medications or as naturally as possible.
I wish you all health and being able to think and function enough to figure out the best help.
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