Lyme is not an 'autoimmune' disease

[JackieCalifornia]

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

[velvetmagnetta]

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.

[velvetmagnetta]

Ricobord,

Wow.  You know a lot of stuff!  Boy, have we all done a lot of studying!  And it's ongoing:

Ricobard -

Re: "Burrascano & MacDonald proved active persistance 20 years ago.  Advanced Labs is proving it today with their new culture test"

I'm not sure exactly which Burrascano study you are referring to but I did find something (that I cannot find again for some reason - sorry cave76!) that showed that the samples were -- PCR positive -- meaning actual Lyme disease DNA and RNA were detected directly...

-- But --

The samples were -- Culture negative -- meaning they did not grow and reproduce while in an ideal environment in a petri dish.

So, it looks like there is persistence of the Lyme DNA and RNA, but nobody can say definitively if this is an active and growing infection.  

They say it is evidence of persistent infection because the DNA evidence is coupled with all those indirect antibody tests that we talked about earlier (Western Blot, IgG and IgM, eos, etc.) - they are taking this to mean:

"Hey look, there is the evidence that the body is fighting an infection from the antibody tests...And as further proof it is Lyme, our PCR (Polymerase Chain Reaction) test revealed actual pieces of the Lyme bacteria.  And so therefor, the patient is definitely fighting a disease that u\is alive and active."

And it does make logical sense - I'll give it that!

But my problem with this logic is that there is an alternative explanation for these results and that is:

We have found evidence of Lyme DAN and RNA through PCR.  The Lyme is definitely there but we cannot say weather this stuff is alive.  So we take a Culture test to see if we can get some of these samples of the spirochete we scraped out to grow in a favorable controlled environment.  But no!  It is not viable and not growing or reproducing.

I know that Dr. Gary Wormser is like a bad word on most Lyme Message boards because of his total disregard for suffering Lyme patients as seen in that movi "Under Our Skin"...BUT since that incredible embarrassment, he has really put his nose to the grindstone to find some answers about Lyme disease and has put out a large number of papers that demonstrate truly good science:

http://jcm.asm.org/content/51/3/857.abstract

Here you can read only the abstract, but you can see that he is trying to prove or disprove in a very controlled environment whether Lyme PCR positive correlates with Lyme Culture positive - because that would mean the infections was alive and active and reproducing even after a long-term antibiotic treatment.

He was able to find persistence - left-over Lyme DNA --- But not viability - all cultures were negative for growth and reproduction.

I have heard of Burrascano's urine test to tell you if your infection is really alive or not, but I have heard so much sketchy stuff about it  - including the fact that they will not reveal how they are going to be able to do this!  At $595, I think I would want have some hint of the efficacy of this test.

Plus, the nanotube tests are supposed to be really really cheap!  And we know exactly what those tests are doing.

[cave76]

" I really think we are getting somewhere here. "

Where? LOL  There are no answers yet---- or there are too many  answers, one for each person who gets better or goes into remission.

Where we " might" be is opening a dialogue about Lyme. I don't expect to find an answer here-----but talking about it certainly is a step in the right direction.

I purposely didn't post the name of the antibiotic that helped me because I didn't want anyone thinking that it might be the answer to THEIR illness. But it's not a secret----  it was bicillin LA injections. For some reason most llmds don't rx it and why I can't begin to fathom!

I got the idea about it from a very intelligent woman on a Lyme bulletin board ages ago, started looking into it and found that a lot of Lymies got some relief with it. Since it was also a help  to many people with syphilis it had a long track record for a spirochetal disease.

My very good (and famous) llmd balked at rxing it for some strange reason and I told him I'd find someone else who would. He was o.k. with that ----while I still continued seeing him.

So I started the twice a week injections and after about a year I started noticing I was feeling better!!!!!!!! I stayed on them for about 4-5 years,

Then I noticed about 5 years later he started rxing bicillin to his patients. LOL Go figure.

Anyway----- that's my story and I'm sticking with it. But I am NOT going to  tell anyone else to take bicillin LA and they'll get better.

Been to that BBQ too many times. :)

[velvetmagnetta]

I love it!  I really think we are getting somewhere here.

I know there are no answers for persistence, debris, or actual infection - but the more we talk about it and actually name our sources like you say - the closer we all will come to finding at least some truth about this disease.

Would you please name the antibiotic that you think worked for you last?  Not sure I have the stamina for any more antibiotic pot-shots...but just in case!  I will ask my doctor about it.

Thanks for being there.  I appreciate your input and your analytical mind.

[cave76]

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

No, you're not alone. I've been sick with Lyme for decades. But I've been 'around' enough in almost all the Lyme forums to know that I can't make a definitive statement. Just guesses---- hopefully based on science, which we know is an ever moving stage.

One thing I can state definitively is that I did have a wonderful remission that lasted four years; when nothing had changed in my life except an antibiotic that MAY have been responsible. That was after taking almost every other antibiotic available----- with no great results, but just 'some'.

After moving to a state where I can't get any antibiotics I've regressed.

Was it that antibiotic? Was it coincidence? I 'think' it was the medication but I can't prove it. That's all I can say. So, the debris theory sounds good but wouldn't MY debris still have been there causing problems? (That was a Devil's Advocate question, in case you have any doubt.)

[velvetmagnetta]

The Lyme blood tests that once are positive for Lyme are always positive for Lyme are:

Any blood test that looks for a Lyme antibody that your own body makes in response to the Lyme infection.  

Once your body makes an antibody, it always has it - that's how vaccines for polio and such work: you will never get polio because your body was given a small dose of it triggering your body's antibody response.  These antibodies are always there for the rest of your life.  You will always be protected from polio!

These Lyme blood tests include the Western Blot, ELISA, IgG, IgM, Eos Protien, and there are a few other that actually measure the AMOUNT of antibodies floating around in your system.

The whole PCR and lumbar scrape is different - you are actually finding pieces of the Lyme burgdorferi DNA and RNA.  So that means you were definitively infected with the Lyme bacteria at some point.

I'm sorry.  I'm waning here.  I have written so much my mind is mush!

Hold on!

OK.  got it.  The problem with all current blood tests, PCR, or lumbar scrapes is that you cannot tell if the Lyme disease is dead or alive and reproducing.

If it is all dead, the method of treatment dramatically changes from killing Lyme to ridding the body of these toxic left-over, immune reactive pieces!

If it is still alive - We have to figure out how to kill it for good AND get rid of those reactive pieces.

So, either way, Bockenstedt's mouse study is still important.