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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
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Avatar universal
Oh, thank you!  I thought that suggestion had fallen on deaf ears.

I've belonged to sites where if you make a statement it should be backed up, even if that resource might be wrong. Sorta like a good journalist has to get a second verification of a fact.
Helpful - 0
Avatar universal
"With about $20,000 raised, [name deleted] left on Feb. 18 for the Klinik St. George in Bad Aibling. Over ten days, she prepared her body for two hyperthermia sessions, in which her body was heated to 107 degrees while her head is kept cool. The hope is that the toxins will not survive the high temperatures."
http://ridgewood.patch.com/groups/volunteering/p/chronic-lyme-patient-leaves-ridgewood-for-germany

Did Rau not learn anything from ICHT and Bachynsky? Of course, Bachynsky had other problems. :)

I read about Dr. Rau since I didn't know much, if anything, about him. I'm sure a lot of people love him and his ideas, much as they did Hulda Clark.

Helpful - 0
4741971 tn?1358622759
Here are the links to the papers I've been talking about:

The Bockenstedt mouse study:

http://www.jci.org/articles/view/58813

And the I posted the link to the Embers monkey study (with quotables and all!) earlier.

I will make an effort to include the actual study wherever I can.  Great suggestions, cave76.


Helpful - 0
4741971 tn?1358622759
More good questions, md2013!

I have hope for the future with you there in the field.

I wonder, If indeed the Lyme is hiding, is it causing an immune system reaction?

Or does the immune system only react to Lyme antigens found in the blood stream and across organ tissues and cartilage?

Another BIG question of mine is: Is this pain I have all over my body an immune system reaction only?  Or is there something else to it - like that "Lyme toxin" theory that never seemed to go anywhere?

Because, I have to say, my symptoms feel somewhat reminiscent of the flu - like fevers and chills and body aches - but there are all these other bad nasty horrible feelings I have all over my body - like this totally irritating skin sensitivity (it comes and goes), photo-sensitivity that hurts my eyes so much I can't be outside without really dark sunglasses - I sit in the dark most of the time because of this strange symptom.

These are just some examples of the terrible weirdnesses I feel.  Some of them resemble flu-like symptoms, but others...I can't even relate them with any other cold or virus I've ever had before.

Oh!  Here's another one: My skin gets all hot - especially around the outsides of my thighs and around large joints (hips, E=etc.) and it hurts like hell - like there isn't enough blood pumping - it almost feels like my limbs are separated from the rest of my body.  And it hurts really bad!

So please take that big brain of yours and apply it to probably the century's most interesting disease!
Helpful - 0
4741971 tn?1358622759
Ricobord,

Would you believe I have already tried just about every one of Dr. Rau's treatment protocols.

This is what I'm trying to tell you all!!!

I have tried pretty much all the natural remedies (but I do, on principle refuse to shove coffee up my rectum - I don't care how clean things get.  Coffee goes into the mouth - not the anus.  Always!).

I also refuse to heat my body up to temperatures that would burn even some protected organs inside the body!  People are so desperate, they'll try anything!

I think it is awful how much guessing we all have to do.  Who do we trust?  I could never trust Dr. Rau to heat up my body until all the Lyme bacteria dies.  This method has been demonstrated in Germany in fact and has injured several people by burning their internal organs!

And so what if it kills the Lyme disease?  Antibiotics do the very same thing - but I, and people like me, am still left with "what happened to me after taking those antibiotics?"  Yes, I believe they may have killed most - maybe not all - of the Lyme bacteria.

I think we can agree that after I took 5 different antibiotics for several years each over a five-year span, that I should have at least made a dent in the number of bacteria present in my body, right?

So, why, for all those five years and going into the sixth, am I having MORE problems than before I started the antibiotics - the so-called Herxheimer?

You may want to suggest that I do not have Lyme - but rather something else.  But, the problems I had before taking antibiotics did improve after taking the antibiotics - but after, I got even worse problems - with pain mostly.

Also, as I said, every single Lyme test I have taken has come up positive - some very positive.  I will list them some other time.

I am certainly not the only one who has experience this life-harrowing herxing!!!

No pain, no gain?

Is that what I am to believe?

Is so much pain really good for you?  Is it helping you at all?  Does it mean you are getting rid of bacteria - or is it an avoidable phenomenon?

It could be a totally useless sh*t-ton baggage of pain that I have been lead to believe that I must carry if I am to get well.

Well, I'm putting my foot down here.  5 years of treatment going on six years of unbearable pain that has only let up a bit now that I have been away from antibiotics for a while???  I don't think so.  I'm willing to bet that the pain we are experiencing is totally and utterly useless to our getting well.

Is anyone else out there having this problem?  Am I alone?

Helpful - 0
1763947 tn?1334055319
Perhaps you have an MTHFR gene mutation? I have two and with those mutations I have trouble detoxing. This is a scientific fact.

So, the herxheimer experience for me is longer and is not a sham.
Helpful - 0
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