Aa
A
A
Close
Avatar universal
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
Cancel
98 Answers
Page 5 of 5
4741971 tn?1358626359
I'm not enraged…just disappointed.  You seemed so open-minded from your first post, but I see now that I was mistaken.

You've accused me and now md2013 of having "Lyme-rage" for offering some differing views.  It's like when men used to call women "hysterical" - it is both rude and totally insulting.  And the funniest thing about it is that both me and md2013 were AGREEING with you!  

The original reason I posted on this message board was because I was so relieved to find someone else who thought there was something fishy about calling Lyme an auto-immune disease.

I was indeed upset by the long reply you wrote in response to the Linda Bockenstedt mouse study.   It was as if you'd already decided that any research that revealed Lyme disease to be eradicated by antibiotics is just plain wrong.  Just because the Lyme bacteria might be dead doesn't mean we are not all suffering!  We just don't know why.

In the Embers monkey study, Burgdorferi RNA and DNA were detected in organs and tissues, but even though "Cultures were kept 12–15 weeks… none were positive for spirochete growth" - meaning evidence of the spirochetes was found, but they were not viable - they were not reproducing and it seems that they may not even have been alive.

Also, the authors of the study could not confirm that, after antibiotic therapy, the monkeys were still infected: "reliable procedures to determine that infection has been cleared from Lyme disease patients have not been established."

You see, they can find evidence of the body fighting an infection by antibody tests, but cannot say for sure whether that spirochete that originally caused the infection is really there directly.  They find antibodies against Lyme, but not the Lyme itself - In other words, it looks like the body continues to fight an infection that may or may not be alive and reproducing.

To me, this is an important fact.  If the question of whether my body is fighting something alive or dead can be answered for sure, then I will know for sure if taking additional antibiotics is necessary for the complete eradication of the disease.

As a matter of fact, the Embers monkey study found that additional, longer-term antibiotics for monkeys still showing signs of neuropathy AFTER treatment did not improve their symptoms!

This entire study is available for anyone to read at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
...Each of your critiques about Bockenstedt's well-executed research was, while well-written and eloquent, decidedly un-scientific.  You write so well and are so well-informed that I believe people listen to you.

So, I just wanted to point out that there may be another piece of the puzzle that people hadn't yet considered:  What if those of us who have taken long-term antibiotics and are not well have something else going on - other than an active Lyme infection?

I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past.  They cannot tell you if you are no longer infected with it after a course of antibiotics.

This is a very important issue.  When I found that out I thought to myself, "Well, then, how am I ever going to know if I've truly rid my body of the infection?"  A main reason this point is so  important to me is that I would like to one day have children - but not if I'm going to pass on this horrible disease to them.

Another reason knowing whether the infection is alive or dead is so important is for treatment options.  If the infection is dead, then no amount of antibiotics is gonna make it any deader!

And if it is in fact DEAD, then what in the Seven Hells am I still sick for?

That's all this whole thing has been about:

A very studious scientist who does everything by the book makes the discovery that in mice, the Lyme infection is killed off within 18 days of antibiotic treatment - and yet the mice still show signs of fighting a disease.  The mice were then treated for another 6 months just to be sure.

So the mice are imaged while they are still alive and are found to have DEAD pieces of spirochetes that are MOST DEFINITELY causing an immune system reaction in the mice's bodies.

This piece of evidence alone is absolutely revolutionary!

Never have I EVER heard of a dead bacteria reacting at all with the immune system.

And if this is true in mice, then it might just be the missing puzzle piece in humans!

What is our next course of action if all our problems stem from a dead soup of debris goo stuck inside our bodies wreaking havoc?

What do we do now?  Antibiotics won't help here in this situation.  How on earth do we get these nasty debris pieces OUT OF OUR BODIES???

I just want people reading this message board to consider this possibility and tell their doctors about it.  Especially you, Jackie, because I think you are very well respected in the Lyme community and people listen to you.

That's why I was so disheartened about the way you replied to my original posting.  It was like you already had an opinion about it - "Oh, well, if someone even suggests with a scientific study or not that we, the sufferers, may no longer have Lyme, then they and their work need to be crucified."

Instead of, "Hmmm…This is very interesting.  Let me see how stringent this research is and if its results are valid."

I have a background in the sciences (before absolutely collapsing for 5 years) and I know good science when I see it.  This study is GOOD SCIENCE.  Please take it under serious consideration...
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
...
------------

And you're right.  I am mad that the population in general does not truly understand the role a control group plays in studies and research.  In fact, for the kind of research Linda Bockenstedt is doing, the definition of a "control group" is even more rigorous than for, say, a psychology study.

What Linda must do is have 2 groups of totally normal mice (the control groups) and another group with a slight tweak to their DNA (in this case making them unable on a gene level to fight specifically the Lyme bacteria) which is known as "the experimental group".    (She actually must have two of this type of group where one will be a control group for yet another tiny tweak - which I'll get into later)

Then, she has to infect both control groups at the same time as both of the experimental groups.  This way she has 2 groups of totally normal infected mice (control) and two groups if immune-deficient infected mice.

Now the antibiotic is administered to ONE control group and One experimental group.  The other 2 groups of mice are sh*t out of luck are are stuck with the disease.  BUT!  They are extremely important as a comparison to the outcome of the antibiotic treatment of all the other mice.

(So now you see, Jackie, why I got just so frustrated when you said that I was the control group for the CDC!  A control group of one?  That just did not make sense.  Plus, I HAVE the disease and HAVE been treated which, by definition, cannot be a control group.  On a purely scientific level your comment made didn't make sense.)

So back to the mice:

(Gosh, I know this is tedious.  But that's experimental science for ya.  You change one darn tiny thing at a time and see what happens and make copious notes about it!)

OK.  You now have a group of mice with normal immune systems infected with the Lyme bacteria and a group of immune deficient mice infected with the Lyme bacteria with no way to naturally kill the bacteria once in enters their little mouse bodies.

She then imaged the mice with a revolutionary 3D technique which enables her to image the mice without killing them (this technique used to burn the subject that was being photographed, ugh!).  She takes their pictures a few hours into the antibiotic treatment and finds many of the bacteria already dead in both the control group and the experimental group.  But it isn't until 18 days later that all the spirochetes that she can see by this technique have all been killed (cut into pieces) but have not been expelled by the body.  Instead, their remains are all over the place - but mostly near the mice's ear cartilage and the mice's knee regions.

Notice she does not say anything about spirochetes that might be hiding or in a biofilm or curled up in a cyst-like form.  Her experiment is limited to finding out if the antibiotic indeed kills off the bacteria and how long it takes to do so.

Meanwhile, back with the original control groups:

The normal mice infected with Lyme bacteria but that are not treated with antibiotics are photographed and found to indeed harbor many spiral borrellia burgdorferi.  And the immune compromised mice are also harboring a burgdorferi infection - though theirs is raging - many many more spirochetes.    Remember these are the control groups and have not been given the antibiotic.

So, for the mice that were given antibiotics, the antibiotics seemed to destroy most if not all of the bacteria in both normal mice as well as in immune-deficient mice.  And in a relatively short time period!  All imaged bacteria was dead as a doornail.  Dead.  Dead.  Dead.

So, you may think, "Well, maybe some are hiding!?!"  To that, I say, please read up on the technology used by the experimenters to image the infected mice:  

Basically, it can take a three-dimensional cross-section of a live animal and watch, in real time, what is going on in its body.  They can actually SEE the little bacterial spiraling, boring into nearby cartilage and tissue.  Perhaps, when the antibiotic comes along, it can only chop off half of it because the other half is buried within the cartilage or tissue?  I don't know.

What I DO know - because this experiment is so sound in its meticulousness and its rigor - is that there is indeed left-over pieces of Lyme disease.

BUT!  The experiment doesn't stop there.  Linda Bockenstedt was curious as to whether this left-over debris was innocuous or whether it has any bearing on the health of the mouse?

She took further experimentally stringent steps to find that indeed it was immune-reactive!  Meaning that when the debris was combined in a controlled setting with immune system antibodies, there was a reaction!  

This is the other miraculous part of the experiment!!!  Never before has a dead bacteria of virus been seen to cause any kind of reaction with the immune system.  Usually, when the body kills off viruses or bacteria, they harmlessly float around until eventually expelled by the body.  Or in the case of an inoculation (vaccine), the dead virus may cause a slight immune response quickly suppressed by the immune system.

But this case is different.  Linda has cautioned me against generalizing her results to humans, but I just can't help myself!  If this is truly the case - the dead pieces elicit a strong immune response - then that would explain so many things about what I have experienced.

Perhaps Lyme disease in its whole spiral form does not elicit quite as strong of an immune reaction because it has evolved for millennia living with the human body.  But once sliced open by an antibiotic and spread across vast swaths of cartilage and tissue, perhaps that is another story entirely.

It would explain why the longer you have Lyme before killing it with antibiotics, the harder a time you have.  I just sit back here and think about how long I've had it - 30 YEARS! - and wonder how embedded it must be in my body.  And how killing it off just about killed me.

A person's immune system alone can kill him or her - this is how so many people infected with the Spanish Flu died.  It was their immune systems' reactions to the virus - not the actual virus itself - that killed them.

So, there you have it - why rigorous, boring, and tedious science is so important in the investigation of a biologic system.

------

I know many other people are still sick after trying a million medic
They make little quiet peeps on the message boards once in a while saying they've tried everything and are still sick.

And people try to help, but I know it doesn't help.  Nothing known seems to really help people like us.  

I just wanted to offer something different.   Something new to consider.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Mojo---- I'm sorry, your first sentence was easy to misinterpret.

"The problem with Lyme Science is there isn't much unless you listen to the IDSA"

Perhaps you misinterpreted my reply to your query?
****************************

"You tell me one lyme protocol that works on EVERYONE! "

I had agreed with you there:

" Lyme is a crap shoot."
No real argument there, if you mean "there is no consistent way to treat.".
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Velvet brought up bismacaine. I was 'around' when that happened and only know what happened on the forums not what was the minds of the people who believed it might help.

The doctor(s) that gave the bismacaine shots, where at least one person died from them,  were certainly at fault. Their interpretation of how it might work was certainly at fault. We don't know if they were just grasping for a ''cure'', grasping for the money, or if they truly didn't understand how it might be dangerous.

I'll add another group of people who aided and abetted that doctor----- the enabler patients who didn't take the time to research the danger with them. Yes, the argument might be that they were too cognitively damaged, too sick or too 'something'  to know how to research. That's very unfortunate---- and I feel truly sorry for them.

And the people who, in on line forums who didn't do it for them and warn them. Shame on them.

Then there were the people who DID warn them and were hooted off the forum or told 'you have to think outside the box'. In this case, that woman who died from it did wind up in in a box---- a coffin. :(
  
The Townsend Letter (!) had this to say, written by the remarkable ''Dr'' Robert W. Bradford, who jumped around, back and forth across the border between the U.S. and Mexico, depending on where the Federales were:

"The Bradford Research Institute (BRI) developed BismacineTM , an
injectable form of bismuth, shown effective against the spirochete
and cyst forms"
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
Cave, exactly.
After being hit by a truck perhaps it didn't come out clearly from the whip lash. Brain fog x 6....lol
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
You clearly have a lot more time on your hands than I do.  I don't have time now or in the foreseeable future to respond point by point to your many lengthy posts, but suffice it to say that I disagree with portions (and perhaps substantial portions) of what you say.

Just putting down my marker for other readers to see, so they know I haven't gone whimpering back into the woodwork.

Hope you get better soon!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
MD2013, Velvet and Jackie ------ in my opinion you all have good points to make. I find a discussion/debate invaluable to bring up points that I didn't consider. I'm sure that many of the other members do also--- just as sure as I'm sure that many of them CAN follow and  learn even though they have Lyme. I know that even in the bottom of the trough of Lyme 'brain', whatever that is, I was able to listen and learn. Never heard of OSPs, blebs, Western Blots before, now I know (and wish I didn't!)

I hope that the discussion can continue with the theories, identified as such, the opinions, identified as such, journal articles, identified as such.  Ipse dixit? Not helpful, in my opinion.

I would appreciate links to the journal articles or articles written by established researchers and perhaps some cut and pastes to back up statements. Even  though we know that research ''facts" are ephemeral and innately designed to be improved upon or proven wrong----- it's the best we can have at any particular point.

This forum has, in the past, been best known as a boon for the newbie who needs an explanation of his/her Western Blot, where they might locate a good llmd etc. combined with a tender regard for their sensibilities. That should continue! But there's no fault in combining that with a good dose of exploring other issues vis a vis debate about research and where it's been, where it's going and everything in between. Minds should be stretched---- even minds that are damaged and frightened and confused.

The three of you are impassioned in your own ways. Nothing wrong with that------ it leads to impassioned debate and that can be done with no ad hominen attacks on the person who has presented something different; I hope.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Okay, here's my quick collection of your greatest hits, with my comments following each:

You:  "The Lyme bacteria is actually not that hard to kill off.  Antibiotics kill it very quickly.  (of course there are always the unsubstantiated claims of cyst forms and hiding and all that) but in any animal study, it has been shown that the Lyme bacteria dies off just fine within a matter of days once the antibiotic reached high enough levels in the blood stream."

Me:  'unsubstantiated claims of cyst forms and hiding and all that' --?  Sorry, you're behind on your reading.
===============================================
You:  "So, please.  Before you go trashing a real scientist for being a scientist (yes, her results are limited to mice and in particular immune-deficient mice) please consider what the research is trying to tell us."

Me:  As opposed to a fake scientist?
===============================================

You:  "I mean doing any research without a control group - you wouldn't know what to compare your results with!  Do you know what a control group is?"

Me:  Yes, i do, and your condescension is not appreciated.
==============================================

You:  "Please read her research a little more closely before you go and criticize what you so obviously don't understand."

Me:  Ditto re your condescension.
==============================================

You:  "I've noticed that the people who DO improve tend to have negative Lyme blood tests and the ones who DO NOT improve tend to have positive Lyme blood tests. [para] This is a HUGE discrepancy."

Me:  Well, let's see.  The sick people have positive test results and the healthy people don't.  This is earth-shaking?
==============================================

You:  "Also, JackieCalifornia, please look up the definition of a 'control group' in an experiment and see how very and utterly important it is."

Me:  You're winning the prize for 'most condescending comments in a single thread'.    

==============================================
You:  "I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past.  They cannot tell you if you are no longer infected with it after a course of antibiotics."

Me:  
-- "Lyme tests can only tell you if you have Lyme now."  Check.  
-- "Lyme tests can tell you if you had Lyme in the past." If you have antibodies present, yes.  

==============================================
You:  "That's why I was so disheartened about the way you replied to my original posting.  It was like you already had an opinion about it - 'Oh, well, if someone even suggests with a scientific study or not that we, the sufferers, may no longer have Lyme, then they and their work need to be crucified.' "

Me:  This i hyperbole at its worst on your part.  Productive?  No.  You keep trying to tell me how ignorant and bigoted I am, but you are the one misstating what I say and casting aspersions at my comments and ability to think.  And you are 'disheartened'!  Oh my!

==========================================
You:  "So now you see, Jackie, why I got just so frustrated when you said that I was the control group for the CDC!  A control group of one?  That just did not make sense."

Me:  You clearly don't understand sarcasm or humor.  I will not spend the pixels to explain the joke to you.

==========================================
You:  "Plus, I HAVE the disease and HAVE been treated which, by definition, cannot be a control group.  On a purely scientific level your comment made didn't make sense."

Me:  Repeat:  You clearly don't understand sarcasm.  And I know precisely what a control group is.

==========================================
Wrap up:

You are very fixed in your opinions and seem to enjoy looking down on the unwashed masses below.  I think you may have some interesting things to say, but it's reallllly hard to hear you when you're so far up on Mt Olympus.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
I don't actually have any answers - just a bunch of questions.  That doesn't make for a very good god, does it?

I didn't realize your "control group" comment was sarcasm.  It was kind of a weird place for a "joke".  Some people really don't know the importance of the whole control group thing, so I was genuinely trying to explain it.  I noticed many Lyme studies lacked an adequate control group - I just want everyone who reads this to be aware of what it is and to make sure any studies they come across include it.

People too often try to fool the public with "studies" that just aren't valid. Now that everyone here knows all about control groups - no one here will ever be fooled!

And I just want to thank you, Jackie, and everyone else who actually read through all my comments - I know they are really long and sometimes boring.

---

The thing about people the difference between people with positive Lyme blood tests and people with negative blood tests:

What I meant was that I noticed long-term antibiotics worked for people who's Lyme blood tests never came out positive for the bacteria - Not before or after antibiotic treatment.  Instead, their diagnoses were clinical (a doctor evaluated their symptoms and concluded they have Lyme)...

Whereas, the people whose blood tests for Lyme come out positive -

(and remember that once you have a positive blood test for Lyme - even if long-term antibiotic treatment worked for you - all your future Lyme blood tests will always come out positive for Lyme because there is no test out there right now that can tell you if it's all gone)

These positive Lyme blood test people are the ones I noticed do not get any better the longer they take antibiotics.  I am one of those.

And I did appreciate the "good morning sunshine" comment!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
Well said Jackie

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Well, I tried! LOL
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
"Velvet:  "I didn't realize that you did not know that current Lyme tests can only tell you if you now have or have had a Lyme infection in the past.  They cannot tell you if you are no longer infected with it after a course of antibiotics."

Jackie:  
-- "Lyme tests can only tell you if you have Lyme now."  Check.  
-- "Lyme tests can tell you if you had Lyme in the past." If you have antibodies present, yes."

My questions about this confusing conversation:

Velvet---- What tests are you referring to? " current Lyme tests can only tell you if you now have or have had a Lyme infection in the past.  They cannot tell you if you are no longer infected with it after a course of antibiotics."

Western Blot? And performed by which lab?
The IgM and IgG tests are topsy turvy in Lyme in all labs.

What about the person who consistently tests neg. (IgM, IgG) with a WB--- even after Lyme was definitively proven via a lumbar puncture?

What do you  make of the Indeterminate ruling on some WB tests, no matter which lab?

Jackie----
"Lyme tests can only tell you if you have Lyme now."  Check."

What do YOU say about people who have Lyme (see above) and the tests say they don't?
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I am still concerned about your flat statement:

"once you have a positive blood test for Lyme - even if long-term antibiotic treatment worked for you - all your future Lyme blood tests will always come out positive for Lyme because there is no test out there right now that can tell you if it's all gone"

What back up do you have for this statement?

btw, lumbar puncture is not a terribly useful test for Lyme.

And then you close with 'What do YOU say about people who have Lyme and the tests say they don't?'  Lyme is a clinical diagnosis aided by lab tests.  ELISA and Western blot are notoriously inaccurate.  PCR testing is far more useful because it provides direct evidence of Lyme infection rather than relying on the patient's immune system reaction, which is often suppressed by the Lyme infection itself.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
As interesting and important debates are about the tests for Lyme---- all the while Bb thumbs its nose at us.

"Additional progress, however, will be slow in Lyme diagnostics, until we learn more regarding the biology of B. burgdorferi"

" Progress for better diagnosis and treatment, in this very complex disease, will come through better knowledge of the spirochete B. burgdorferi."

http://www.igenex.com/labtest.htm
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
You say above:
=================================
Jackie----
"Lyme tests can only tell you if you have Lyme now."  Check."

What do YOU say about people who have Lyme (see above) and the tests say they don't?
=================================
Not sure why you are asking this.  False negative tests are common when using W.blot and ELISA, and that's pretty well established and commented on here.

That is why PCR testing is useful:  it is direct evidence of Lyme infection, not relying on the indirect evidence of a Lyme-suppressed immune system which then gives a false negative result.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
"Lyme tests can only tell you if you have Lyme now."  Check."

Backing out of a confusing back and forth where another person was thought to be me---- I'll start with one sentence.

Correct me if I'm wrong---- Do you, Jackie,  agree with the declarative statement made--- "Lyme tests can only tell you if you have Lyme now."

Is that what the 'Check' meant? Or did 'Check' mean something else. I took it to mean that you agreed but only you can clear that up.

I asked, but didn't receive an answer (guess everyone was too busy or didn't notice it) if the 'Lyme tests' meant WB or ELISA or PCR of fluids or lumbar puncture with a PCR assay. (Igenex performs that PCR assay of the CNS fluid)

Confusing, isn't it?

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
Remember the new Va law: If your lyme test comes back negative the Doctor must tell the patient " it doesn't mean you don't have lyme"
That says a lot.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
The whole thread has gotten too swirly.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
I agree. We all have "Lyme brains" I guess.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
The only time I have seen a quick fix for Lyme is if treated immediately after getting bitten.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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!)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
The Townsend Letter
Public Health Alert

Not publications that I would rely on.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1763947 tn?1334058919
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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?

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
"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.)

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
" 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. :)

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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.



Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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."
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
Yes!  I am so afraid to tell anyone to do anything because of what happened to me on antibiotics.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
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!

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Velvet, you said:
"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."

It doesn't bother me. :)

You also said:

"I haven't personally seen that to be true in myself, especially, but also for many others. "

I have personally seen that to be true in myself, especially, but also for many others."

[I'm 'funning' with you----- :) and I hope you understand that. It's a game of Devil's Advocate.


You said:
" I would really like to know if this is true under controlled experimental conditions."

Wouldn't that be loverly? :) What sort of spreadsheet/datebase would be necessary to tally the results?
Because each person in that study has a 100 trillion different cells with 46 chromosomes in each of those cells---------because each person will have different DNA/RNA-----because each person will have different innate and accquired immunity traits------because each person may or may not comply with the parameters of the study (unless they were locked up, which I'm sure violates many parts of our constitution)----- yada yada.

Velvet---- You're asking all the questions that I would ask, in your position; ones that I have asked for different reasons.
There are many people who have to abandon antibiotics-----for real reasons not because they abhor the very thought of antibiotics.

I certainly don't have the answer to why you feel more pain with antibiotics, assuming you took them responsibly.  Some people swear by Buhner's protocols. Have you tried them?

The ESR and ANA are tests that I've had nothing but 'normal' results with. Throughout my life, sickness and in health. I'm feeling more pain now than I ever have before---- but perhaps it's because I'm not on antibiotics now?  :)

There's a sorta joke Lymies kid about----- it's called "The Study of One".

My Study of One answers your question:
" do people start feeling slowly better over a matter of years completely independent of the antibiotics?"

The answer is NO. :)

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
OK.  I'll take your "Study of One".  One definitely knows how one feels after starting and stopping antibiotics! ;)

My LLMD does follow some of Buhner's protocol - Japanese Knotweed for one - unfortunately, I did not feel any better on this herb.  Also, I was on cat's claw for many years.  It made me feel just as bad as antibiotics did, so I guess it was doing something similar.

I know it seems, after reading about everybody's varied reactions to different protocols, that there will never be one answer for everybody -

But I think, perhaps, that since Lyme effects nerves and we all have nerves everywhere, that all of our varied responses to meds and herbs and such might actually be leading us to a "Unified Cure for All".  (I'm a physicist.  I can't help searching for the Unified Theory!)

It's like back-tracing the effects to the cause(s). If you see the spill pattern of the aftermath of a drop of rain falling to the ground, you may see just a bunch of random splatter -

But perhaps those splatters can be traced back to the source - the drop of rain it came from.  And from there you can calculation the speed of the raindrop, earth's gravity, and the angle in which it fell.

You can calculate these things precisely by analyzing the random, spread out droplets that the original raindrop splattered into.

Maybe we can take all of this seemingly random Lyme data - everybody reacting differently to the brand and duration of antibiotics, some people a being helped by Buhner's herbal remedies, and some people not getting any better no matter what they do - and somehow back-trace it to a common cause - something about Lyme and the human body we hadn't considered before.

Like I said, nerves are absolutely everywhere in the body, so if there is a problem on the nerve level, then it could explain all these varied symptoms and treatment responses.

Well, I'm going to go think about your paragraph here:

"Because each person in that study has a 100 trillion different cells with 46 chromosomes in each of those cells---------because each person will have different DNA/RNA-----because each person will have different innate and accquired immunity traits------because each person may or may not comply with the parameters of the study (unless they were locked up, which I'm sure violates many parts of our constitution)----- yada yada."

(Perhaps sans the "yada yada")  And see if maybe there is a pattern or some sort of trajectory we can follow back to its source.  It does seem increasingly necessary to find out for sure if the infection is alive or dead.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
"And see if maybe there is a pattern or some sort of trajectory we can follow back to its source."

I agree that would be a worthwhile effort. Again with the Devil's Advocate! (grin) :

Who will fund that? Unless you mean that 'we' 'us' mere laymen can discover it by using our not inconsiderable brain power. If 'we' could------How would we accomplish that? How would we get funding?

You're a physicist and physics has some hard and fast rules (like stress, gravity, temperature gradients). The body doesn't have any 'hard and fast rules' or rather it has trillions of them, each different from the next body.

You said:
"It does seem increasingly necessary to find out for sure if the infection is alive or dead. "

A resounding YES! I've been reading, off and on, studies/articles that address that. So far I haven't found anything that have been reproducible, independently verifiable or doesn't a have a flaw in it.  The 'debris' theory sounds good and Bockenstadt may be on to something.

Do you know who the author/owner of Spirochetes Unwound is?

Do you have any other studies/articles that address the dead debris theory? I'd love to read them, if you do because I've always found it imperative to read both the praise and the negative critiques of a theory.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
I have been away seeing doctors and being sick.  I am formulating a response tonight...

...Stay Tuned!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
4741971 tn?1358626359
Ok.  I'm finally ready...


From cave76:

"The body doesn't have any 'hard and fast rules' or rather it has trillions of them, each different from the next body."

Boy, you got that right!  That is precisely why I like physics so much and chose to study it instead of biology!  (I guess I should have chosen biology after all…?)

But maybe the effects of the disease on the body is what varies - as opposed to the causes.  Perhaps the solution is not a different treatment for every different body.  In fact, I am becoming more and more suspicious of that idea.

Some things work for some people and not others?

If these varied treatments really worked, we wouldn't all still be on this website looking for answers.  


---

Toxin:

I have a theory about the reason why nobody's been able to name a Lyme toxin.  (I'm talking about the chemical structure of the toxin - not just that there are toxins.)  I think, when the spirochete is alive and in one piece, it evades the immune system pretty well...

---
(see: http://www.sciencedaily.com/releases/2011/06/110616193911.htm

and for the actual paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3102705/

Especially you, md2013.  You'll find this study extremely interesting in your field of immunology.)
---

...by somehow causing an immune system reaction that is heightened, but not effective.  By this I mean that the little spirochete guys sit around the lymph nodes, causing the immune system to react - but they somehow prevent specification of the antibodies.

In other words, say that the white blood cells that fight disease are the army.  The army is called up to fight and then armed with weapons but they are given vague orders of who exactly to kill - such as "kill everyone wearing green".  

So they go out and start firing all over the place and they hit some of the enemy, but not all and there is a lot of death by friendly-fire.  This may explain the auto-immune aspect of the disease and also why the immune system fails to eradicate the disease all by itself.

---

I would think that the LAST place a disease would want to be is right near a lymph node.  It's like soldiers hanging out right near an enemy base!  What are they thinking?!?

Remember, this disease has been around a LONG time.  So it's had a lot of time to evolve to survive in a human body.

My guess is that the spirochetes that hang out right outside the lymph nodes must secrete some sort of chemical that interferes with the specification process that happens in the germinal (inner) section of the lymph nodes - so that our white blood cells (antibodies) are shooting blind.

This made me think that it has more ways to discourage the immune system from killing them.  Maybe they're not as toxic while they are alive, but when they die, their insides are exposed and perhaps that's the really toxic part.

The reason I have come to consider this idea is because I've had this disease my whole life - I was infected when I was 3 years old - and I was tired most of the time and in pain in cycles.  I would get tired, my joints would hurt for a while and then I'd go lay down and after a while the pain would subside.

But at year 30 of the disease, I found out that's what I had and took antibiotics for it (minocycline).  Six weeks into antibiotic treatment I got hit really hard with what's supposed to be the Herxheimer reaction, and all the spasms and tics that I had as a child came crashing back.  I was jerking around all over the place - accompanied by unimaginable pain.

It's as if killing a whole bunch of Lyme at one time was dangerous - perhaps deadly.  Maybe the immune system is aware of this bad reaction to the killing of spirochetes and only kills a few at a time.

I think the inside of the Lyme spirochete is way more toxic than the outside.  So, when we kill off a large number of them at one time by taking antibiotics, the body is just overwhelmed.

Some antibiotics work by snipping the bacteria in half, thus killing it.  The body then sends macrophages to eat the remaining dead pieces and pass them out of the body either by mucus, urine, feces, or sweat.

Perhaps it is simply the insides of the spirochete that are the toxins and that's why we can't isolate a particular toxin.  But still, if this is so, we should be able to name the particular toxin or toxins that are reacting with our nerves!

I know that the "Herxheimer" for Lyme is more than an immune system reaction alone.  Immune system inflammation and everything that goes along with fighting disease hurts but there is also an additional type of pain that cannot be explained by the immune reaction.

Maybe, after 30 years, the infection has multiplied so much (bacterial populations grow exponentially) that when the antibiotics snipped them in half, the insides were then exposed all at once causing a system-wide freak-out that has yet to subside.

---

About the author of "Spirochetes Unwound":

I do not know the author of "Spirochetes Unwound" and when I tried to leave him or her a comment, it didn't publish.  But now that you mentioned it - I looked at the 'about' page and found an email address.  I think I will drop him a line.  I first wrote on this website months ago when I found the article - and it was all I could do to communicate with anyone - trying to figure out anything on the computer was really really hard for me for quite a while.

He is a microbiologist and may be able to design an experiment for us!

Just some thoughts.  If anybody else out there has any thoughts on the "Lyme debris" or "Lymph nodes" experiments, please come on and chime in!


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
As always, great information and very useful. Yeah, for all the "newbies" to the Lyme's site (I only have been on here about four months myself), know in advance that Lyme's is a confusing, frustrating, and painful mess. Insurance companies have weighed in also, as always, not wanting to cover years of antibiotics. If you visit any typical Lyme's related website, they will give a rosy picture of how easy it is to treat Lyme's. The problem is, as in my case, often tests give false positives or negatives. I was positive on one, negative on another, yet have most if not all the symptoms, am disabled, and was bit by a tick and had the bulls eye rash that is indicative of Lyme's Disease. After a dozen years and no treatment, I am a physical and mental wreck. I was "healthy as a horse" before the bite, so I know without a doubt I have this damned disease. My new doctor admitted as much, but still re-diagnosed me with that stupid Fibromyalgia b.s. which is a cop out diagnosis much more accepted by the insurance industry. He is treating me through heavy vitamins, water aerobics, pain medications, anti depressants, anti tremor medications, etc. He knows full well the cure is likely not going to be there, and certainly insurance won't cover it and if he prescribed heavy doses of anti biotics for months to years for something the C.D.C. says only requires a two week course, then he can lose his license. Thus the underlying frustration with this disease. I would be happy to be diagnosed with M.S., anything that they will acknowledge and treat. By the time proper Lyme's research has been done and proper medications created, it will be a worldwide epidemic, of that I have no doubt. This is a big one for the pharmaceutical companies, because the disease keeps people very sick, but generally doesn't kill them, so it's a win win for drug companies. Everything is always about money these days, to think otherwise is a waste of time. This site has been a God's send for me. I have found new friends and a lot of useful information, especially on Magnesium replacement, since Lyme's strips the body of Magnesium which creates a lot of symptoms by itself. Since joining this site I have incorporated some of the information into my daily life and have a bit more energy and better outlook. Before this site I wanted to die, very badly. I used to be what one would call a "Man's man". Big guy, very tough, all star athlete, never backed down from a fight, then a little bug floored me. So, I feel that much more useless as a human being. Most days I am completely bedridden. Today has been another one of those days. Of course this makes everything worse, the pain worse, the depression worse, but what can you do when you barely have the energy to put on a sock? Suicide has been a constant thought since becoming disabled. It's like everything that made me into a "man" is gone, the drive, the strength, the fortitude, the toughness, all of it. Add to it the fact most Doctors treat Lyme's patients like they have the plaque and don't want to treat them, and add to that the bad research out there, and it's frustrating. I have seen more and more talk about Lyme's disease on hunting shows, fishing shows, etc. So the awareness is growing. Now we just need some very famous people to come down with it so real action will start. We need big time news coverage and specials. First of all we need reliable tests, so those of us who have had it for years can get the positive result and at least some treatment. The first time I was tested by the Elisa test, the positive outcome, I had already had it for well over a year. I couldn't figure out what the hell was happening to me. The Western Blot, a notoriously unreliable test, came out negative so my Neurologist labeled it "fibromyalgia", a ******** diagnosis if ever there was one. Anyway, this is a good place for the new people, there are a lot of very educated people, like Jackie, so pick their brains if you need to.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Lyme Disease Community Resources