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