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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
Ricobord,
I hereby posit that the Lyme herxheimer reaction is a sham. Indeed, it happens for syphilis patients, but what happens to many of us goes way beyond the pain involved in a herx - the pain is much greater and it lasts much longer.
Th "Herxheimer Reaction" is thought to be an initial worsening of symptoms just after taking antibiotics - the theory is that the bacteria you are killing is releasing toxins. And the body takes a few days to weeks to get rid of the nasty toxins.
Well, mine NEVER seemed to go away. All of my Lyme blood tests were and continue to be positive. Most of my worst symptoms happened only after starting those antibiotics.
I cannot seem to find ANYWHERE what toxins exactly are released after killing Lyme disease. What is its chemical structure? Can we create an anti-toxin designed to block it?
We have created anti-toxins for both butulism and tetanus. Why not for burgdorferi?
I saw this one paper one time, but it was never really substantiated, that named a Lyme toxin...I'll try to find it. I don't know how valid this research is as it has never been repeated. REPEATABILITY is a major science experiment concept - just about as important as those "control groups" I force fed you guys earlier.
Here it is. This is the only time I've ever seen a reference to an actual Lyme toxin with a name and all:
"Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase."
It is from that Townsend letter where I think all of our Lyme beliefs stem from. This letter covers everything from Lyme dementia to Lyme being modified into a bio-weapon.
So, read with caution and a huge grain of salt:
http://www.townsendletter.com/FebMar2006/lyme0206.htm
It's old. It's from 2006. It has a whole lotta really great words but NO SOLUTIONS for people with Post-Treatment symptoms!
What the heck do we then do with a zinc endoproteinase? Can we block it? Are we stuck with it? How much of it is there after years and years of Lyme?
Anyway, that paper is seven years old and Linda Bockenstedt's mouse study is just last year. She found not actual toxin - but she did find significant left-over Lyme debris. And that this debris is indeed wreaking havoc on our symptoms. Maybe worse the longer you had the disease?
(I just want to say, thank the good lord for spell check! Boy, did I have a hard time writing that. Ugh!)
I hereby posit that the Lyme herxheimer reaction is a sham. Indeed, it happens for syphilis patients, but what happens to many of us goes way beyond the pain involved in a herx - the pain is much greater and it lasts much longer.
Th "Herxheimer Reaction" is thought to be an initial worsening of symptoms just after taking antibiotics - the theory is that the bacteria you are killing is releasing toxins. And the body takes a few days to weeks to get rid of the nasty toxins.
Well, mine NEVER seemed to go away. All of my Lyme blood tests were and continue to be positive. Most of my worst symptoms happened only after starting those antibiotics.
I cannot seem to find ANYWHERE what toxins exactly are released after killing Lyme disease. What is its chemical structure? Can we create an anti-toxin designed to block it?
We have created anti-toxins for both butulism and tetanus. Why not for burgdorferi?
I saw this one paper one time, but it was never really substantiated, that named a Lyme toxin...I'll try to find it. I don't know how valid this research is as it has never been repeated. REPEATABILITY is a major science experiment concept - just about as important as those "control groups" I force fed you guys earlier.
Here it is. This is the only time I've ever seen a reference to an actual Lyme toxin with a name and all:
"Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase."
It is from that Townsend letter where I think all of our Lyme beliefs stem from. This letter covers everything from Lyme dementia to Lyme being modified into a bio-weapon.
So, read with caution and a huge grain of salt:
http://www.townsendletter.com/FebMar2006/lyme0206.htm
It's old. It's from 2006. It has a whole lotta really great words but NO SOLUTIONS for people with Post-Treatment symptoms!
What the heck do we then do with a zinc endoproteinase? Can we block it? Are we stuck with it? How much of it is there after years and years of Lyme?
Anyway, that paper is seven years old and Linda Bockenstedt's mouse study is just last year. She found not actual toxin - but she did find significant left-over Lyme debris. And that this debris is indeed wreaking havoc on our symptoms. Maybe worse the longer you had the disease?
(I just want to say, thank the good lord for spell check! Boy, did I have a hard time writing that. Ugh!)
The IDSA very neatly ''supported" their contention that Lyme disease is easily cured by the very short and very low administration of doxycyline by saying it was for "early Lyme".
Yes, it is. Yes I agree with the IDSA :).
Early can mean when the patient still has the tick attached with a neat-o bulls-eye rash around when seen by the doctor and no tests have to be done or waited for.
Early does NOT mean a few weeks later! PERIOD.
Yes, it is. Yes I agree with the IDSA :).
Early can mean when the patient still has the tick attached with a neat-o bulls-eye rash around when seen by the doctor and no tests have to be done or waited for.
Early does NOT mean a few weeks later! PERIOD.
The only time I have seen a quick fix for Lyme is if treated immediately after getting bitten.
While I respect your level of detail in discussing the mouse study concluding that the mice carried only dead pieces of bacteria in their body, I don't agree with using this to conclude that borrelia is indeed easily killed with short term abx. There are dozens of studies showing persistence.
Also, the theory that the bacteria are eliminated early and residual symptoms are only about the immune system continuing to attack dead bugs does not in any way explain the people who get 'well", feel fine, and go back to their lives. Then, months or years later, symptoms come back and progress. Some get new symptoms and even get sicker than previously. I just don't believe that this is possible with some detritus floating around. And then there's all the people who test culture positive sometime later. A culture proves the bacteria is living and reproducing. Burrascano & MacDonald proved active persistance 20 years ago. Advanced Labs is proving it today with their new culture test.
Pamela Weintraub said in her book "Cure Unknown" that there is indeed evidence of some immune dysfunction that we don't understand in some "post Lyme" patients. But she also showed how there's plenty of evidence of persistent infection that needs to be treated. If the theory that only dead bugs remain and ongoing symptoms are caused only by an immune system attacking the dead pieces, then steroids should treat that nicely. Unfortunately, that's not the case, which punches a great big hole in that theory. Ten + years of studying the Lyme "autoimmune" condition has resulted in absolutely nothing benefitting these patients.
Unfortunately, you're in a category no one understands or has any answers for. There just isn't the knowledge or the tests to figure out what's going on in your body yet.
Also, the theory that the bacteria are eliminated early and residual symptoms are only about the immune system continuing to attack dead bugs does not in any way explain the people who get 'well", feel fine, and go back to their lives. Then, months or years later, symptoms come back and progress. Some get new symptoms and even get sicker than previously. I just don't believe that this is possible with some detritus floating around. And then there's all the people who test culture positive sometime later. A culture proves the bacteria is living and reproducing. Burrascano & MacDonald proved active persistance 20 years ago. Advanced Labs is proving it today with their new culture test.
Pamela Weintraub said in her book "Cure Unknown" that there is indeed evidence of some immune dysfunction that we don't understand in some "post Lyme" patients. But she also showed how there's plenty of evidence of persistent infection that needs to be treated. If the theory that only dead bugs remain and ongoing symptoms are caused only by an immune system attacking the dead pieces, then steroids should treat that nicely. Unfortunately, that's not the case, which punches a great big hole in that theory. Ten + years of studying the Lyme "autoimmune" condition has resulted in absolutely nothing benefitting these patients.
Unfortunately, you're in a category no one understands or has any answers for. There just isn't the knowledge or the tests to figure out what's going on in your body yet.
From what I've read, antibody test for Lyme are not positive forever in a patient treated for Lyme. In some patients, the antibodies linger for quite a while (months or years), but in the absence of a bacteria, the immune system will stop making new antibodies. In a patient who is cured, eventually they'll test negative for antibodies, although no one knows exactly how long.
It is only virus antibodies that persist for a life time. This is why most people do not get the same viral infection twice. If they're exposed a second time, the existing antibodies stop it cold. There are some that our immune systems cannot clear, especially the herpes family of viruses, and those can flare up when the immune system is stressed or compromised.
But because we do not maintain lifelong antibodies to bacterial infections, we can get them again and again. TB antibody tests, for example, can be positive indefinitely in some people, but it took the medical world a long time to realize that TB can survive long term ABX and can be harbored by someone symptom-free for a very long time. Some of those long term positive antibody tests might just reflect a low grade residual infection.
The presence of Lyme specific antibodies proves a patient has been exposed to Lyme. That's all. It doesn't prove whether it was last month or last year. There's terrible confusion over this. I read about one patient who got a positive IgG WB result, which is exactly what the CDC says indicates an infection of a month or more, and yet the gal was told her results only indicated an infection in the past, not a current infection. Arrgghh. I'm not a doctor and even I can understand that IgM comes first and IgG follows. Both can indicate current infection.
Six years after infection, I had an IGeneX positive IgM (I was horribly sick) and only band 41 on the IgG. I still can't comprehend how they can ignore Lyme specific IgM antibodies just because someone got bit by a tick more than a month ago.
A patient with antibodies could have been cured last month and the antibodies are leftovers. Or, the patient could be sick with Lyme symptoms and it indicates an active infecton. Or, the patient may have the bacteria lurking in their system and have no symptoms because their immune system is holding it at bay. It's been known to lurk for months or years after an initially symptomless infection.
I had a relapsing/remitting course of Lyme for nearly 5 years with periods of wellness between "attacks" of fatigue, headache and malaise. I'm very curious to know what a WB would have shown during and after each of my "attacks." I think I would have shown Lyme specific antibodies shortly after the attacks passed as I believe my immune system beat back the infection each time. Until the chronic symptoms kicked in, of course.
I read someone's notes from a patient conference in the Bay Area where a treating LLMD said that she believes in treating someone with Lyme specific antibodies even when they're asymptomatic, as she believes it's easier to treat early vs. later when symptoms appear or get worse. (She's referring to people who get tested thinking they might have been exposed, such as family members of a Lyme patient.) The antibody tests can't find something that's not there, so the so-called "false positive" is mostly a myth BEFORE treatment. Five of the 10 bands in the CDC's IgG criteria are not Lyme specific, so only if you have exactly those 5 and no symptoms can you safely say it's a false positive. Of course the newly cured who still tests positive could call it a false positive.
Make sense? Clear as mud, really. It just provides further evidence of the overwhelming need for a really reliable antigen test.
It is only virus antibodies that persist for a life time. This is why most people do not get the same viral infection twice. If they're exposed a second time, the existing antibodies stop it cold. There are some that our immune systems cannot clear, especially the herpes family of viruses, and those can flare up when the immune system is stressed or compromised.
But because we do not maintain lifelong antibodies to bacterial infections, we can get them again and again. TB antibody tests, for example, can be positive indefinitely in some people, but it took the medical world a long time to realize that TB can survive long term ABX and can be harbored by someone symptom-free for a very long time. Some of those long term positive antibody tests might just reflect a low grade residual infection.
The presence of Lyme specific antibodies proves a patient has been exposed to Lyme. That's all. It doesn't prove whether it was last month or last year. There's terrible confusion over this. I read about one patient who got a positive IgG WB result, which is exactly what the CDC says indicates an infection of a month or more, and yet the gal was told her results only indicated an infection in the past, not a current infection. Arrgghh. I'm not a doctor and even I can understand that IgM comes first and IgG follows. Both can indicate current infection.
Six years after infection, I had an IGeneX positive IgM (I was horribly sick) and only band 41 on the IgG. I still can't comprehend how they can ignore Lyme specific IgM antibodies just because someone got bit by a tick more than a month ago.
A patient with antibodies could have been cured last month and the antibodies are leftovers. Or, the patient could be sick with Lyme symptoms and it indicates an active infecton. Or, the patient may have the bacteria lurking in their system and have no symptoms because their immune system is holding it at bay. It's been known to lurk for months or years after an initially symptomless infection.
I had a relapsing/remitting course of Lyme for nearly 5 years with periods of wellness between "attacks" of fatigue, headache and malaise. I'm very curious to know what a WB would have shown during and after each of my "attacks." I think I would have shown Lyme specific antibodies shortly after the attacks passed as I believe my immune system beat back the infection each time. Until the chronic symptoms kicked in, of course.
I read someone's notes from a patient conference in the Bay Area where a treating LLMD said that she believes in treating someone with Lyme specific antibodies even when they're asymptomatic, as she believes it's easier to treat early vs. later when symptoms appear or get worse. (She's referring to people who get tested thinking they might have been exposed, such as family members of a Lyme patient.) The antibody tests can't find something that's not there, so the so-called "false positive" is mostly a myth BEFORE treatment. Five of the 10 bands in the CDC's IgG criteria are not Lyme specific, so only if you have exactly those 5 and no symptoms can you safely say it's a false positive. Of course the newly cured who still tests positive could call it a false positive.
Make sense? Clear as mud, really. It just provides further evidence of the overwhelming need for a really reliable antigen test.
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