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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
Wow, that second quote by Donta et al. is everything that I have been going crazy all over this website about!
I've looked and looked all over the internet for some hint that someone is looking for answers to those very questions:
"
(1) Whether there is continuing infection,
(2) auto-immunity to
(3) residual or
(4) persisting antigens, and
(5) whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs...
"
I remember seeing this paper listed on http://www.lymeneteurope.org/news/ but I skipped over it because I thought it was just another analysis without any actual conclusions. (There are lots of those kinds of papers!) But sometimes the right questions are just as important! If we are asking the right questions, it may point us in a more productive direction.
This part bothers me, though:
"The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time."
I haven't personally seen that to be true in myself, especially, but also for many others. I would really like to know if this is true under controlled experimental conditions. Are people getting better over time BECAUSE of the antibiotics? Or did the antibiotics kill off the disease within, say, a month and people start feeling slowly better over a matter of years completely independent of the antibiotics?
My current general practitioner (not my LLMD) is finally realizing that I am really sick and not getting better.
While I am ecstatic that he has taken an interest, I am not so excited about the direction he seems to be going in. He had me take some blood-work to see if I may be having an auto-immune reaction: the tests are: ESR (Erythrocyte Sedimentation Rate) and ANA (anti-nuclear antibody).
And auto-immunity is what this message thread was originally about!
If my body is indeed attacking itself and not a foreign substance (bacteria, virus, etc.), then why would I feel so much MORE pain after 6 into my original antibiotic treatment - and then LESS pain the further away from antibiotics I get?
If mt pain is auto-immune, then wouldn't my body still be attacking itself? Why the improvement? And why the sharp up-shot in pain 5 years ago when I first began antibiotic treatment?
I mean, once you have an auto-immune problem, you always have it, right? Unless you take steroids that directly depress the immune system, your body would continue to attack itself. It wouldn't just stop doing that on its own.
Questions Questions Questions!
I do hope that Donta et al. try to adequately answer them.
And thanks for all the reading material!
I've looked and looked all over the internet for some hint that someone is looking for answers to those very questions:
"
(1) Whether there is continuing infection,
(2) auto-immunity to
(3) residual or
(4) persisting antigens, and
(5) whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs...
"
I remember seeing this paper listed on http://www.lymeneteurope.org/news/ but I skipped over it because I thought it was just another analysis without any actual conclusions. (There are lots of those kinds of papers!) But sometimes the right questions are just as important! If we are asking the right questions, it may point us in a more productive direction.
This part bothers me, though:
"The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time."
I haven't personally seen that to be true in myself, especially, but also for many others. I would really like to know if this is true under controlled experimental conditions. Are people getting better over time BECAUSE of the antibiotics? Or did the antibiotics kill off the disease within, say, a month and people start feeling slowly better over a matter of years completely independent of the antibiotics?
My current general practitioner (not my LLMD) is finally realizing that I am really sick and not getting better.
While I am ecstatic that he has taken an interest, I am not so excited about the direction he seems to be going in. He had me take some blood-work to see if I may be having an auto-immune reaction: the tests are: ESR (Erythrocyte Sedimentation Rate) and ANA (anti-nuclear antibody).
And auto-immunity is what this message thread was originally about!
If my body is indeed attacking itself and not a foreign substance (bacteria, virus, etc.), then why would I feel so much MORE pain after 6 into my original antibiotic treatment - and then LESS pain the further away from antibiotics I get?
If mt pain is auto-immune, then wouldn't my body still be attacking itself? Why the improvement? And why the sharp up-shot in pain 5 years ago when I first began antibiotic treatment?
I mean, once you have an auto-immune problem, you always have it, right? Unless you take steroids that directly depress the immune system, your body would continue to attack itself. It wouldn't just stop doing that on its own.
Questions Questions Questions!
I do hope that Donta et al. try to adequately answer them.
And thanks for all the reading material!
Yes! I am so afraid to tell anyone to do anything because of what happened to me on antibiotics.
Bicillin. Never even hear of it. It is a form of penicillin. It sounds promising, but you say it took you a year to notice a difference? That's a long time - of course, not in Lyme years - it's a short time in Lyme years!
I will ask my doctor about this one - although, I am deathly afraid of taking any more antibiotics because they just totally wreck me."
Please re-read my disclaimer (grin)
" But I am NOT going to tell anyone else to take bicillin LA and they'll get better."
I will ask my doctor about this one - although, I am deathly afraid of taking any more antibiotics because they just totally wreck me."
Please re-read my disclaimer (grin)
" But I am NOT going to tell anyone else to take bicillin LA and they'll get better."
The 'toxin' enigma hasn't been settled yet, regardless of what Townsend Letter, Public Health Alert states. Probably Mike Adams, the Health Range, also. :)
Studies are still ongoing and the absence or presence of a "Lyme toxin' is still being debated.
Back in 2009 Donta was one of the authors of this:
"A Novel Toxin (Bb Tox 1) of Borrelia burgdorferi"
Scroll down a few articles to find it at:
http://www.lyme.org/conferences/99_abstract.html
Snip
"The mechanisms responsible for many of the symptoms of Lyme disease remain to be delineated. Because many of the symptoms involve the nervous system, we postulated that the Lyme spirochetes produce a toxin that interferes with normal neurophysiological function. We have identified and cloned a gene of B. burgdorferi which encodes a protein that is a neurotoxin."
In 2012 Donta et al. are still looking:
"At present, the diagnosis of Lyme disease is based primarily on the clinical picture. The pathophysiology of the disease remains to be determined, and the basis for the chronic illness in need of additional research.
Whether there is continuing infection, auto-immunity to residual or persisting antigens, and whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs remains to be delineated."
http://www.ncbi.nlm.nih.gov/pubmed/23248715
An ongoing project is :
http://projectreporter.nih.gov/project_info_description.cfm?aid=8145943&icde=12284856
NIH project # 1DP2OD008463-01
$2.3 million dollar project
to help develop a vaccine, of course! But hey!
"The notion of immunizing against a bacterial toxin represents a potentially general strategy for future vaccine development. With this proposal, we aim to not only fundamentally shift the accepted view of Bb pathogenesis, but also to challenge the paradigm that antibiotics must kill bacteria and non-immunogenic toxins are intractable vaccine candidates. These seemingly unrelated goals are actually quite intertwined. Our approach rests on the philosophy that a more complete understanding of toxin biosynthetic pathways and chemical structure can be rationally exploited to design novel therapeutics.
Public Health Relevance: Bacterial pathogens employ numerous mechanisms to evade the human immune system. We have discovered a novel strategy within the organism that causes Lyme Disease, who's pathogenesis remains largely enigmatic. A greater understanding of these processes will lay the foundation for developing the next generation of antimicrobial drugs."
Bottom line? They're still looking.
Studies are still ongoing and the absence or presence of a "Lyme toxin' is still being debated.
Back in 2009 Donta was one of the authors of this:
"A Novel Toxin (Bb Tox 1) of Borrelia burgdorferi"
Scroll down a few articles to find it at:
http://www.lyme.org/conferences/99_abstract.html
Snip
"The mechanisms responsible for many of the symptoms of Lyme disease remain to be delineated. Because many of the symptoms involve the nervous system, we postulated that the Lyme spirochetes produce a toxin that interferes with normal neurophysiological function. We have identified and cloned a gene of B. burgdorferi which encodes a protein that is a neurotoxin."
In 2012 Donta et al. are still looking:
"At present, the diagnosis of Lyme disease is based primarily on the clinical picture. The pathophysiology of the disease remains to be determined, and the basis for the chronic illness in need of additional research.
Whether there is continuing infection, auto-immunity to residual or persisting antigens, and whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs remains to be delineated."
http://www.ncbi.nlm.nih.gov/pubmed/23248715
An ongoing project is :
http://projectreporter.nih.gov/project_info_description.cfm?aid=8145943&icde=12284856
NIH project # 1DP2OD008463-01
$2.3 million dollar project
to help develop a vaccine, of course! But hey!
"The notion of immunizing against a bacterial toxin represents a potentially general strategy for future vaccine development. With this proposal, we aim to not only fundamentally shift the accepted view of Bb pathogenesis, but also to challenge the paradigm that antibiotics must kill bacteria and non-immunogenic toxins are intractable vaccine candidates. These seemingly unrelated goals are actually quite intertwined. Our approach rests on the philosophy that a more complete understanding of toxin biosynthetic pathways and chemical structure can be rationally exploited to design novel therapeutics.
Public Health Relevance: Bacterial pathogens employ numerous mechanisms to evade the human immune system. We have discovered a novel strategy within the organism that causes Lyme Disease, who's pathogenesis remains largely enigmatic. A greater understanding of these processes will lay the foundation for developing the next generation of antimicrobial drugs."
Bottom line? They're still looking.
Oh! And I thought you were cursing at me, "Do you have the MTHFR gene?!?
;)
I'll have to ask my doctor about that one. A little while ago, he was following the mold guy's protocol and gave me the HLA haplotype test. The results were that I was not extra-sensitive to mold, but I did have a gene associated with chronic Lyme.
(Lots of info here: http://emedicine.medscape.com/article/330178-overview#a0104)
I don't know if that is related to toxin removal or not...but...What about the toxins? Do you know what they are? What they are called? Or are you referring to some vague over-all toxin?
Does this MTHFR gene mean that you have a hard time removing ALL kinds of toxins - or just the Lyme ones?
If anyone could name specifically which toxins are these "Lyme toxins", then perhaps we can find an anti-toxin for it. Botulism and Tetanus both have specific toxins that are combated by special anti-toxins.
;)
I'll have to ask my doctor about that one. A little while ago, he was following the mold guy's protocol and gave me the HLA haplotype test. The results were that I was not extra-sensitive to mold, but I did have a gene associated with chronic Lyme.
(Lots of info here: http://emedicine.medscape.com/article/330178-overview#a0104)
I don't know if that is related to toxin removal or not...but...What about the toxins? Do you know what they are? What they are called? Or are you referring to some vague over-all toxin?
Does this MTHFR gene mean that you have a hard time removing ALL kinds of toxins - or just the Lyme ones?
If anyone could name specifically which toxins are these "Lyme toxins", then perhaps we can find an anti-toxin for it. Botulism and Tetanus both have specific toxins that are combated by special anti-toxins.
May I ask how much pain you're in? Do you feel the herx all the time or does it come and go?
I know pain is so subjective, but can you try to describe your level of pain?
Thanks!
I know pain is so subjective, but can you try to describe your level of pain?
Thanks!
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