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» LymeNet Flash » Questions and Discussion » Medical Questions » Major Study Just Released About Chronic Lyme

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Author Topic: Major Study Just Released About Chronic Lyme
Bugg
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Hey Guys-
In case you haven't seen this, below is a major study just released regarding PLS or chronic lyme patients. I think it's significant for two reasons:

1) Mainstream medicine is acknowledging that people with lyme even after years of treatment are still debilitated by their symptoms. Great to have this in writing in a study by major healthcare institutions.

2) It shows there's some sort of immune system dysregulation going on in chronic lyme patients that prevents some of them from getting better. It illuminates that fact that it's more than just anti-borrelia antibodies.

Here's the study: if anyone has access to the full text would you please let me know: Thanks!

Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms

Abhishek Chandraa, Gary P. Wormserb, Mark S. Klempnerc, Richard P. Trevinoc, Mary K. Crowd, Norman Latova and Armin Alaedinia, Corresponding Author Contact Information, E-mail The Corresponding Author

a Department of Neurology and Neuroscience, Cornell University, New York, NY, USA

b Division of Infectious Diseases, Department of Medicine, New York Medical College, Valhalla, NY, USA

c Department of Microbiology, Boston University, Boston, MA, USA

d Division of Rheumatology, Hospital for Special Surgery, New York, NY, USA
Received 30 November 2009;
revised 20 February 2010;
accepted 2 March 2010.
Available online 12 March 2010.

Abstract

Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome PLS or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy p < 0.01 and normal healthy p < 0.01 groups. The observed heightened antibody reactivity in PLS patients could not be attributed solely to the presence of cross-reactive anti-borrelia antibodies, as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels. Immunohistochemical analysis of PLS serum antibody activity demonstrated binding to cells in the central and peripheral nervous systems. The results provide evidence for the existence of a differential immune system response in PLS, offering new clues about the etiopathogenesis of the disease that may prove useful in devising more effective treatment strategies.

Keywords: Post-Lyme disease syndrome; Chronic Lyme disease; Borrelia burgdorferi; Immune dysregulation; Antibody

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Wolfed Out
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Bugg,

That's terrific! The more doctors who keep an open-mind about understanding this, the more great minds will be working on treatments and cures.

Let's hope this train keeps rolling.

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TerryK
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I believe the purpose of this study is to relegate what we call chronic lyme disease to the IDSA coined "Post Lyme Disease Syndrome" which according to the IDSA is an illness without persistant infection that requires no further antibiotic treatment.

Steroids here we come!!

Terry

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seibertneurolyme
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Bugg,

While the article may have some valid points -- the bottom line is it is by Wormser who will publish anything which would downplay the fact that chronic Lyme is due to an active ongoing infection.

Sure there may be immune system changes -- but that is not all that is going on. And in many cases getting rid of the infection can reverse the immune system issues.

Bea Seibert

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22dreams
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The fact that persistent symptoms exist in some patients (far few according to Wormser et al, and more according to ILADS et al) is not a point of contention.

the cause is. and still is.

This could be interpreted, or spinned as the case may be, one way or the other.
Depending on the doctor reading it.

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onbam
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Poisoners!
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MariaA
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does anyone know what an anti-neural antibody is? Is this something they made up or is it a legitimate test? Obviously, with most studies, I'd take them at face value, but The Worm and friends have a tendency to make stuff up.

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TerryK
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http://www.prohealth.com/library/showarticle.cfm?libid=15231

anti-neural antibodies are antibodies against antigens (molecules that stimulate activation of T cell infection defense) found in the central nervous system

-----------------------------------------------
They seem to be associated with a number of what are defined as autoimmune illnesses that many with lyme develop such as lupus and sjogren's.

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TerryK
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[Anti-neuronal antibodies and central nervous system diseases: contribution to diagnosis and pathophysiology]
[Article in French]

Antoine JC, Honnorat J.

Service de Neurologie, Hpital de Bellevue, Saint-Etienne.

Antibodies against antigens found in the central nervous system have been evidenced in several neurological diseases.

The most well-known are associated with paraneoplastic neurological diseases (Anti-Hu, Yo, Ri amphiphysin, Tr, CV2 and Ta antibodies). Some of these antibodies are specific for certain types of cancer or neurological syndromes and are highly useful diagnostic tools for the clinician.

They have contributed to the hypothesis that these paraneoplastic neurological syndromes involve autoimmune cross reactions between tumoral and nervous system antigens. They are however most unlikely pathogenic on their own.

Anti voltage-dependent calcium channel antibodies associated with Lambert-Eaton syndrome which is paraneoplastic in only 60 p. 100 of the cases are also observed in cases of paraneoplastic cerebellar atrophy.

Anti-GAD antibodies are seen in non-paraneoplastic stiff man syndrome and in certain progressive cerebellar atrophies. Antibodies reacting with different glutamate receptors are detected in different neurological diseases including Rasmussen's encephalitis. Finally, antibodies are described in diverse conditions such as amyotrophic lateral sclerosis, Sydeham chorea or Gilles de la Tourette syndrome.

The significance of the antibodies observed outside the context of paraneoplastic syndromes is not well understood, but the anti-GAD antibodies associated with progressive cerebellar disorders and autoimmune polyendocrinopathies could be an expression of the autoimmune nature of certain neurological degenerative processes affecting the central nervous system.

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arauch2008
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Aren't they the same as the ana testing for lupus? I thought that is what ana stood for, could be wrong though.

Maybe my own questions of lyme or lupus could be summed up with the fact that both mess with the same mechanism in our bodies? Not maybe for the same reason- such as active infection in lyme even chronic but still fooling with the same place in our bodies leaving the door open for major health issues??? Just a thought

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MariaA
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no, that's anti-nuclear antibody.

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TerryK
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arauch -
My sister developed lupus during treatment for lyme. When she stopped treatment, lupus went away.

I was told that borrelia inserts it's DNA into ours and this is why our immune system attacks us.

Many cases of lupus could actually be lyme or other infections.

Terry

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sometimesdilly
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Sorry to be so negative here, but when you see the name "Wormser" on ANY publication that is a cue to (choose one or more of the following:

1. assume that the subject matter being discussed has been chosen for political reasons, that the intent of the "study" is in no way neutral, and that whatever its conclusions are, they will be fashioned as weapon to be used against anyone or any entity that dares to provide evidence of or act on evidence of chronic Lyme disease.

2. Laugh and shake your head in disbelief.

3. Be angry that the earth-is-flatters like Wormser have access to funds that could so much better be used to produce real and desperately needed science about tick-borne diseases.

------

Exercise in translation from Flat Worlder to Lyme Patient Speak: :

"The results ...(offer) new clues about the etiopathogenesis of the disease that may prove useful

in devising more effective treatment strategies."

Bingo.

Translated: infection doesn't persist, something else is going on, so there you have It! Take away long-term antibiotics from Lyme patients and provide a placebo our liking, preferably depression meds.

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TerryK
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Mark S. Klempner is another earth is flat guru.
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MariaA
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Also, Terry's first link to the prohealth summary is basically to the same authors' work. The second article she posted sounds more independent but it sounds like there are different anti-neural antibodies? Why do they not list which ones they found in the Wormser summary?

Just questioning everything, which is usually a good approach with Gary Wormser's work. Remember, some of these guys (Alan Steere I think) had done bad studies that used their own labs and claimed that the lab had superior tests for Lyme, and based the entire evaluation of the study's success around the assumption that their own lab was superior. That's the sort of thing I'm wondering about with this fairly non-specific mention of anti-neural antibodies in the summary above.

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sometimesdilly
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Terry- funny we should both use the exact same term -flat worlders-at the same time- we cross-posted..

Maria- you are very diplomatic.. [Smile]

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MariaA
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NO I'M NOT!

One of my worst fears is that someday I'll be in a room with one of these jerks at a conference or something, and I'll have to deal with not acting on my incredible rage at the unspeakable harm that their 'body of work' has caused to so many Lyme patients.

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TerryK
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can't take credit dilly - I read your post and responded.

Wormser and others like him have been proposing auto-immune as a cause for chronic lyme disease for years, it's just that they haven't been able to prove it. Now they hope to use this poorly understood anti-neural antibody to bolster their claims.

They completely ignore the fact that so many improve on long term antibiotics. Even in their own studies they ignore it.
Terry

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MariaA
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well, yeah, that's the thing- you'd think that if they found the magic mechanism that they've been looking for, that they'd give a lot more info with a lot more details than was in the summary there.

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sometimesdilly
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Maria- it was meant as a compliment, and yes, i can well understand how difficult it would be to restrain oneself in his presence.

Just hearing these fools speak on the audio feed from the guidelines "public" hearings awhile back made me gag.

Terry- Thanks for the concise history on Wormser's attempts to prove the world is flat.

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MariaA
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yeah, I knew that about it being a compliment [Smile]

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Bugg
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On a different note, I do see one good thing that could possibly come from this study: It might help us with our disability claims.

Just hear me out: In prior studies it was reported that persistent symptoms did exist despite treatment. However, those studies didn't reveal an actual physical dysfunction that would be biologically limiting. The symptoms were often just lumped in with CFS.

Now, this study shows that lyme patients (many of whom test NORMAL on many tests after treatment) may actually test positive for these anti-neural antibodies. Disability companies have been using "normal tests" of lyme patients to deny them coverage and/or cut off their benefits.

Hopefully these abnormal tests can be used to show a real biological physical disability.

Additionally, oh boy, I'm almost afraid to pose this (don't hit me)....that this study could show long-term abx might be necessary to modulate the immune system...In other words, if you can show a particular abx is effective at reducing these antibodies then maybe it could be covered by healthcare insurers....plenty of off-label uses for abx are covered....

Please don't throw me under the bus...I'm just trying to glean something hopeful from this...

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Sojourner
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I'm not in a "bugg" squashing mood [Big Grin] (too messy!)so I'll be gentle.

I highly doubt that when immune modulation is discussed, anyone of these esteemed lyme researchers has in mind inexpensive antibiotics................oh no, when I hear immune modulation, I immediately think of big pharma salivating at the chance to use (or develop) a nice EXPENSIVE Monoclonal antibody for all those "Immune disregulated" post lyme syndrome patients (you know, the ones that weren't cured with 28 days of Rocephin).

This study smacks of having the IDSA on the run after ILADS handed them their collective butts last summer by presenting the TRUCK LOAD of research showing persistence of disease (thanks, Doc P. and company).

This line of research is a way to spin the mounting evidence (like that produced by ILADS) and finally, make a boat load of cash off of Lyme Disease!!!!!!

So, no squashing, bugg............I just gathered you in a tissue and gently put you down outside our door (like my kids do) [lick]

Seriously, thanks for posting the link, I believe it is important for us all to think critically about these issues, and discussion like this furthers our cause!

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Bugg
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Thanks for being gentle, Sojourner...I appreciate your point of view....
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Bugg
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Here's what I'm still struggling to understand. Why couldn't the autoimmune component be a result of a persistent infection? I don't necessarily see how they are separate and distinct concepts?

Even Dr. Fallon has entertained the idea that there may be some autoimmune component with lyme.

Is it just the source of the study that bothers people (which I totally understand) or is it that you don't believe there is any autoimmune component?

I, for one, think some sort of autoimmune issue is going on with me. I treated for years and still suffer with symptoms. All tests are normal now. My Physical therapist says she sees the welts that arise on my back just like her other "autoimmune patients" when she works on me.

I'm not saying I don't still have a persistent infection. However, if perhaps, my immune system is dysregulated (attacking my body) then I would at least like to know this information. No, that doesn't mean that I want steroids. It just means that perhaps there could be something that could be developed BESIDES ABX which could help us modulate our immune systems. For me, just treating the infection long-term hasn't worked.

Obviously, I don't want long-term abx to be taken away from anyone that it could potentially save from this suffering...just hoping for more research/options...

For what it's worth, I have posted below Dr. Alaednini's research which was on Dr. Fallon's site:

Again, just discussing this...not taking sides...I just want answers to this madness....I'm not in any way saying I'm anti-long-term abx....I just wish there were more options....


Dr. Armin Alaedini from Weill Medical College of Cornell University reviewed different hypotheses for persistent symptoms (molecular mimicry, neo-epitope release, heightened non-specific B cell activity) and then demonstrated by his recent research that patients with persistent symptoms after treated Lyme disease have elevated levels of anti-neuronal antibodies compared to patients who responded well to antibiotics and are no longer symptomatic; this work provides objective confirmation of an ongoing abnormally activated immune response in patients with persistent symptoms.

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sometimesdilly
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Bugg-

It's great that you keep asking questions, especially when it takes some courage, like here, where most of us are stomping on worms, myself on the top of the list, with no apologies then or now.

Like Maria said earlier, it is extremely difficult to even keep civil , much less pay attention to the topic at hand when the people being referred to here, like Wormser, have caused such incalculable harm.

I'll try my best.... Your question as I understand it (and hope for it to be) is:

is it possible for an autoimmune response/condition to occur/kick in at some point after ADEQUATE antibiotic treatment, and to be responsible for what may be interpreted as active infection symptoms?

I've discussed that exact question face to face with Dr Fallon as well as with with some of the best LLMD's in the country, and over many weeks, with my father, who was a research scientist of infectious diseases, and who read through the bulk of all the existing medical and scientific studies related to Lyme disease.

The short answer to your question, I believe, is that there is not yet a definitive answer to that question. The science simply is not there. Nobody knows.

I think and hope, anyway,that I am saying this next thing accurately and well:

Some of the most reputable Lyme literate people out there, those with direct and indirect experience treating thousands of patients with chronic Lyme, do believe that it is possible that an autoimmune condition does present in at least some patients some of the time.

The problem is that there is no way to differentiate symptoms caused by active infection from those that might be caused by an autoimmune response.

Going back to the political problem, because it can't be avoided. The auto-immune question is a core question relating to Lyme treatment.

Absent the science to answer the question at all adequately, the IDSA and their ilk present what is in essence a fundamentally flawed logical argument:

" there is no such thing as chronic Lyme because a few weeks of abx kill all the bacteria in every circumstance, so therefore any symptoms that present after that MUST by definition be caused by something else."

When the flat earthers feel in control and invincible, any post-IDSA recommended treatment symptoms are attributed to Lyme patients' craziness.

When the flat earthers feel that they can't afford politically to ignore Lyme patient rights, then they go whipping up answers that fit and justify their preconceived flat earth notions.

You can understand the problem here, no doubt, of ever being able to accept as credible any studies that stem from that poisonous fruit of, at best, willful scientific and medical ignorance.

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Sojourner
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Well, I do think there is one way to determine active infection right now.................herxheimer reaction goes a long way to distinguish between symptoms caused by infection v. symptoms caused by autoimmune reaction(if there is such a thing).................this is the short answer.
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seibertneurolyme
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Wish I knew if the antibodies they are talking about were measured in the blood or spinal fluid.

Hubby had 4 or 5 different tests from 2 different labs which all showed elevated antibodies to myelin and peripheral and central nervous system components back in 2001 - 2004. Unfortunately both of the labs are now out of business -- AAL and Immunosciences (bought out by Neurosciences and then stopped offering the tests). The tests he had done were with blood.

But since hubby has 4 or 5 white matter brain lesions it seems logical that the elevated antibodies to myelin would be a reliable test result.

Bea Seibert

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sometimesdilly
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Sojourner-

problems with that answer include:

1. not all meds cause herxing at all, even with active infection.

2. not everyone with an active infection responds with a herx even to the meds that typically cause herxes

3. since accurate testing for co-infections in particular is so impossible, meds given to treat a co-infection may not tackle the correct active infection, therfore no herx results though active infection is present.

4. i was referring to irrefutable "objective" evidence differentiating active infection vs. autoimmune response (or another possibility altogether- who knows?) in patients who have been treated with all appropriate meds for an adequate length of time.

Despite our own collective vast and real experiences, that kind of scientific evidence doesn't exist yet.

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Bugg
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Sometimesdilly, thanks so much for that point of view...I appreciate it very much....

Actually, what I was trying to articulate was whether or not you can have both an active infection CONCURRENTLY with an autoimmune dysfunction......Maybe I'm still infected after years of treatment but also have autoimmune dysfunction...Maybe the abx can't reach what remains in bone marrow or residual tissues for me...who knows...

That is why I hope that research can look at both the active infection angle as well as the autoimmune angle..

There is a subset of patients like me that has tried to stay on abx and just simply doesn't see improvement.....maybe I just never found the magic one to either modulate my immune system or knock out the last of the infection.....

I've got to tell you though that some of these studies that look at immune system dysregulation give some of us hope who have been driven crazy by trying everything under the sun and never getting our lives back....We see others get well, we do what they did and wonder "What the hell???"

Clearly some peoples' bodies are responding to abx treatment better than others...

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sometimesdilly
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Bugg-

i am with you 100 % on the need for those studies. I am one of those who isn't getting well after years of treatment, and I am open to hearing any plausible reasons why that might be and what I can do differently or additionally.

Despite that need, or maybe even because of that need, I can't overlook WHO is doing the studies, because it matters a great deal, not least because intent and purpose can distort the questions asked and how results are interpreted.

Adding- even with much more and better scientific information, sometimes the why's are simply not answerable.

For example, years ago my husband was stricken with a type of adult leukemia that is almost always fatal--he was given a 5% chance of survival.

He spent 7 months in a nop-notch hospital. Literally every other patient he knew there with the same disease died, though they had received the exact same treatment.

Why did my husband live when so many others died? Clearly he was a member of the 5%.survival club.

What was it about him, his body, that put him in that 5%? No one knew then or knows now. "Genetics" has been the best general guess, but WHAT specifically about his genetics made the difference is beyond anyone's reach. So far.

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timaca
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Bugg~ Thanks for posting that article. It is thought provoking.

Bugg and Dilly~ Consider getting tested for various viruses if you are not getting well. Consider HHV-6 and EBV testing at Focus Lab and enterovirus testing at ARUP lab.

See: www.hhv-6foundation.org and www.enterovirusfoundation.org for more info.

Best, Timaca

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Bugg
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Timaca-Thanks so much for the kind words and the thoughtful suggestion. Yes, I've been tested for HHV-6, EBV, HSV...etc...all the viruses and all are negative....Hope you're feeling better with your anti-viral treatment....

Sometimesdilly-Great post....So glad to hear your husband made it through that nightmare...

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Jed
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Being new to the Lyme community (but not to ME/CFS), I do hope you will be forgiving of my lack of knowledge around these issues....but I would just like to add that it seems to me the most likely cause of PLS is actually undiagnosed co-infections, and very likely viral.
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MariaA
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well, the issue is that most of what they're calling 'post-lyme syndrome' is actually active lyme- they define, rather arbitrarily, Lyme as cured in 30 days of antibiotics, and then also arbitrarily call everything that persists past that point 'post-lyme'. there's an enormous body of evidence that says that they're wrong. Most of the time if you can treat people wiht antibiotics long enough, they improve or recover completely. That's kind of the crux of a lot of the weird politics around Lyme research- the first camp, the 'post-lyme' camp, gets all the government research money because they have the ear of the NIH on this issue- ie, people in that same camp are the officers at the NIH who are responsible for Lyme related funding.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
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lauirel
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I was doing some research and part of that was doing a search on here for Lupus. I have been pursuing the relationship of Lupus to Lyme or vice versa or whatever.

I don't want to join in and also get squashed, but I do have an additional question this thread didn't answer. Bugg, thank you for asking these questions, because I have had similar ones. Just like Bugg, I am not looking for conflict, neither do I want to start any, so please extend your patience to me as well?

I am at a place where autoimmunity has also entered my mind. Then I came across some info on the net that started my journey eventually finding this thread.

What I found, is again the HLA Class II Antigens, in which many with Lupus or autoimmunity also have the HLA-DR in common. For those unfamilar with HLA-DR, it is a subset within the HLA antigens, and in certain combinations, can genetically predispose one whom may contract Lyme to have a protracted illness. Coincidently, it is the HLA-DR in certain combinations and the same as those in which contract Lyme, that is also connected with the people in which are exposed to mold and also have a protracted illness. What I am finding atleast between the two entities of mold illness and Lupus, is the Anti-nuclear antibody called Cardiolipin of which is present in atleast these two entities, and I am suspecting Lyme, if the HLA-DR combination meets the criteria for all three to develop.

I had a western blot by LabCore. Again, I now know this should of been Igenix. Another discussion, somewhere else. But the only band that showed up was 41 kda. I have aksed in the past of this quite sometime ago, so I am not looking for clarification again. But the politics surrounding the 41 kda have always been at the back of mind. Some say it is cross reactive, some say it is only cross reactive to spirochetes including Lyme, others say it is specific to Lyme. I have spoken to many, including the Dr. at Igenix. I have never been able to do a follow up at Igenix, because I simply cannot get ahold of that kind of money on my own. This has taken much from me.

What I found that disturbed me, within the relationship to the HLA-DR commonality, is the ability of Lupus to cause a false positive test for syphillus, another spirochete. Is this possible to also cross react with the Lyme spirochete? [bonk]

Again, my treating Lyme won't stop as it has gotten me back some of my life. But I was just wondering.

LauireL

I am definately not in the flat lander group, nor do I believe PLS to explain all cases of protracted or chronic Lyme.

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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sutherngrl
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Bea said......Sure there may be immune system changes -- but that is not all that is going on. And in many cases getting rid of the infection can reverse the immune system issues.


Actually I am beginning to believe that if we first corrected the immune system we would then get rid of the infection.

Because of reactions I have had to certain medications I know my immune system is totally disregulated.......long story......steroids, plaquenil....blah, blah, blah. But....

I do beleive that if the immune system itself can be tamed, we would all get well.

Not that any of these ppl are on LN now, but there are a lot of ppl that get LD and get well in a few months or within a year and move on with their lives. In other words many get well quickly, they just aren't hanging out here.

Its the others, "us" that have refractory lyme that spend years and years treating, with hardly any improvement. And we are the ones that I think have an issue with our immune systems.

So although the Worm has his name on this paper, a portion of it makes sense to me. I think the answer IS in the immune system.

I think my doc is working on that now by adding in the high dose vitamin D as an "immune modulator". Give me 6 months and I will let you know.

LauireL, do you test positive for lupus? Also my first WB from labcorp only showed IGM band 41, but after treating for a year I got an IGM CDC positive test result from labcorp.

SG

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MariaA
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whoa, what does Plaquenil do that you just mentioned?

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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lightparfait
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Lauirel

Research the relationship between lupus and heavy metals stored in the kidney...and most likely the brain and other organs...

The Kidney harboring metals...disrupts hormone levels, causing hypotyroid symptoms...with no bad thyroid function...(people treat thyroid mistakenly who have this) and cause autoimmune response from this. This was recently confirmed for me...and I have a very high ANA with lupus symptoms...but no lupus diagnosis.

Heavy metals, candida, parasites live together and cause lyme to linger with the other viruses, etc.

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dmc
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for LauireL,

Yale had said don't pay attention to band 41 because it means nothing. Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate.

Patent link http://tinyurl.com/yslooc

In the this link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease.

He also states that you can tell the difference between these illnesses by a clinical diagnoses. All the lyme pts. have band 41.

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=423723&blobtype=pdf

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sutherngrl
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Maria, plaquenil is an immune modulator and is used on ppl with autoimmune disorders. It helps to regulate the immune system; so does large doses of vitamin D, which is what I am on now.

When I was on plaquenil 200mg I was fine, but as soon as we upped the dose to 400mg my body went haywire. One thing after another. It was like out of a syfy movie.

I think my immune system was in a very disregulated state and the larger dose of plaquenil was just too much. But even before that incident I have always felt that my immune system has been in over drive.

I think we have it both ways actually with LD. One part of the immune system is in over drive, the other part is suppressed. To get those two to work together is the ideal setting to heal the body.

I think what possibly happened to me was that the plaquenil suppressed my immune system too much. Of course this is all speculation on my part. And I also have to add that I had taken a 3 week round of steroids prior to the plaquenil. So who knows.

I actually felt good on the steroids. But maybe it was an after effect from those or the combo of steroids and plaq.

No matter, I still think the immune system needs correcting in those of us that have refractory lyme.

Lauirel, they patented the test years ago, yet it has never been used. Makes you go hmm!!!!

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lauirel
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Sthrngirl

Quote "Its the others, "us" that have refractory lyme that spend years and years treating, with hardly any improvement. And we are the ones that I think have an issue with our immune systems. "

I am really beginning to think it has everything to do with the immune response, initiated by the genetic mutation or the genetic disposition already in existence directly related to the HLA-DR domain.

Quote "I think my doc is working on that now by adding in the high dose vitamin D as an "immune modulator". Give me 6 months and I will let you know."

I do hope for some results for you and would be very glad to hear about it until then.

Quote" LauireL, do you test positive for lupus? Also my first WB from labcorp only showed IGM band 41, but after treating for a year I got an IGM CDC positive test result from labcorp."

This was very important to me to hear. I am wondering if I do in the future test, what the results might relfect. I have been treating for three years.

No, I have not tested positive for lupus, but I am having some really specific symptoms in which lead me to investigate Lupus. Before, I hadn't even considered it. I have no healthcare, this disease has taken much. I work, but its low paying, and I just make ends meet. So further testing is out of my reach. Kinda between the rock and the hard place kind of thing.

Lightparfait,

Actually it was my kidneys that lead me to the research on Lupus, its relationship to Lyme, and then the commonalities of the cardiolipin antibodies, and then the HLA-DR.

Quote" This was recently confirmed for me...and I have a very high ANA with lupus symptoms...but no lupus diagnosis."

This is what I am hoping is going on in my case. I do know that not all that test high for ANA have lupus. But it is another commonality between, mold, Lyme, and I am finding some interesting others.

Thank you for the links!!

dmc,

Quote, "Yale had said don't pay attention to band 41 because it means nothing. Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate."

That is quite interesting and you can bet I will follow that link with more research. Thank you!!

Quote, " In the this link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease. "

This is where my problem of understanding comes in. If high levels of ANA can be confirmed, and with cardiolipin antibodies present, in which can induse a Lupus-like state, of which would then be cross-reactional to spirochetes. Specifically mentioned is syphilus, but what I am finding is this may be the case with all spirochetes due to the HLA-DR anomoly. Does anybody know if this is the case?

Again, just wondering very specifically about this HLA-DR, anticardiolipin avenue.

LaurieL

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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Pinelady
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In my opinion it is another coverup for the drug companies for them to not claim liability.

Put it out there that it is possible with just enough info to cover the rear and let doctors continue to serve immunocompromised patient whatever they want...


http://www.wpsdlocal6.com/healthy/?feed=bim&id=88424842

May need wider eczema caution for kids
Story Updated: Mar 18, 2010

May need wider eczema caution for kids: FDA

REUTERS
Reuters US Online Report Health News

Mar 18, 2010 10:07 EDT

WASHINGTON (Reuters) - Novartis AG and Astellas Pharma eczema drugs may need their warning labels expanded after dozens of new reported cases of

cancer and infection in children, U.S. Food and Drug Administration staff said in documents released on Thursday.

Agency scientists said 46 cancer cases and 71 infection cases have been reported in patients aged 16 and younger from 2004 to 2008 with

Novartis' Elidel and Astellas' Protopic.
Both drugs -- also known as pimecrolimus and tacrolimus respectively -- already carry strong

warnings about cancer and infection, but officials should consider expanding them to include the new post-marketing reports, they

wrote.

The documents were released ahead of an FDA advisory meeting Monday to weigh potential safety concerns with a variety of drugs used in younger patients.

Additionally, other FDA staffers said the warning label for GlaxoSmithKline Plc's herpes drug Valtrex was "insufficient" for certain central

nervous system side effects in children, although no other concerns were seen.

Another scientist noted concerns about the use of Pfizer Inc's antibiotic Zmax in pregnant women and the potential for it to cause stomach blockages in newborns.

The FDA will weigh the recommendations from its panel of outside advisers before taking any action.

It was not clear what staff reviewers thought about the weight-loss drug orlistat, marketed as Glaxo's Alli and Roche Holding AG's Xenical. No

new safety concerns were seen with other drugs to be discussed at the meeting, FDA staff said. Those drugs include:

* L'Oreal sunscreen ingredient Anthelios 40

* DuPont imaging agent Cardiolite (technetium Tc-99)

* Sanofi-Aventis allergy drug Nasacort AQ (triamcinolone); five-disease vaccine Pentacel; diphtheria, tetanus and pertussis vaccine Daptacel

* Privately held Boehringer Ingelheim's HIV drug Viramune (nevirapine)

* Glaxo's rotavirus vaccine Rotarix; diphtheria, tetanus and pertussis vaccine Kinrix

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Tracy9
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Bugg, the autoimmune component IS a result of persistent infection, but not all persistent infection is a result of autoimmune disorder, as they are trying to make the case here.

They are basically trying to say, in my opinion, there is no such thing as ongoing infection, and that post lyme syndrome, chronic lyme disease (to placate us) or whatever you want to call it is real but isn't really caused by bacteria after those golden 4-6 weeks, but by people who have an autoimmune component already in their makeup.

I have a rare, incurable autoimmune disease that was caused by Lyme. All of the literature on it lists Lyme disease among the causes. I didn't have it before I had Lyme. I tested positive on a biopsy, nobody simply guessed I have it, I do have it.

This is just another study made to fool people into thinking they are siding with us by spinning the words when they are really still saying there ain't no such thang.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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Bugg, you really should get tested for some autoimmune diseases. My LLD brought it up. I have been treating with abx for 5 1/2 years and was only getting worse and worse.

He did an EMG and nerve conduction study which were normal. Then he did a punch skin biopsy and bingo, I have small fiber neuropathy. The symptoms do overlap with Lyme, yet I have all the symptoms of small fiber neuropathy and none of the others of Lyme.

My CD 57 was 32 two years ago and is 120 now. I'm pretty convinced I'm no longer dealing with Lyme as primary issue, but an autoimmune disease.

So although it's still important to treat the Lyme as the cause of the small fiber neuropathy, the critical treatment for me is for the autoimmune disease. I started on IVIG which has proved to be challenging for me, and I am working with my LLD to see if I can continue with it/ give it another try or if I need to switch to another therapy.

You really need to follow up. The longer an autoimmune disease goes without treatment, the worse the outcome. I fully believe I've had this for years. I have little to no sensation in my hands and feet, very poor balance, my whole autonomic system is dysregulated, heartrate, breathing, etc....it's not fun.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lauirel
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I cannot thank each of you enough for your patience with my questions as well. This was/is an absolutely great thread.

Be Well.

LaurieL

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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invstgtr
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Hi everyone,

I'm the lead investigator of the study being discussed. I'd like to thank everyone here for the interest in our work. But I see some misunderstanding about the study. I'd like to set some things straight:

1) This study was done in my lab at Cornell. I am not a clinician. So, samples from carefully-characterized patient and control populations came from Dr. Klempner, Dr. Wormser, and other collaborators, for which I am very grateful. I take full responsibility for the integrity and accuracy of the work. So, if you think that this study has some shortcomings, please blame it only on me and not on any of the co-authors.

2) I did not bring any biases into the lab when I started this research project and do not have any aims in this work other than gaining a better understanding of the disease so that other investigators can eventually find ways to treat it effectively. I think we need to be open to novel research strategies that yield indisputable answers for what causes the disease and how we can treat or cure it.

3) I should mention that the presence of the reported anti-neural antibodies does not necessarily indicate autoimmunity. Nor does it necessarily mean that the antibodies are directly causing the symptoms. What is important about our findings is that they demonstrate the presence of immunologic abnormalities in PLS and imply the existence of a disease process affecting the immune system in a substantial number of patients. This suggests that we can find out more about the disease by studying the patients' immune response more closely. We might also discover specific new biomarkers to aid in the diagnosis and follow-up of patients through this approach.

Thank you for reading. I hope that my explanations were helpful.

Best regards,

Armin Alaedini

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Pinelady
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quote invstgtr:"I think we need to be open to novel research strategies that yield indisputable answers for what causes the disease and how we can treat or cure it.

(WE KNOW WHAT CAUSES IT it is called BORRELIA-the most stealthy organism known to man.)

We might also discover specific new biomarkers to aid in the diagnosis and follow-up of patients through this approach."

(Biomarkers for Borrelia-You mean they would actually admit that it can cause Eczema, Arterial Vasculitis, etc. etc. ?

You mean they would admit that Lyme patients may really be immunocompromised to the point of catastrophic infections, and not show resistance?)


Mr A- I admire you for your bravery for speaking

out with your collaborators being so highly

disregarded by the Lyme citizens who have lied to

the public yesterday, today and will continue to

lie by denying chronic lyme, denying us a test and

procedure that works, denying that MS, ALS, Autism,

Alzheimers, Chronic Fatique, and numerous

autoimmune disorders can actually be LYME

Disease, and denying the public is in really bad

trouble. If you have not seen the movie Under Our

Skin, I highly recommend it.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Keebler
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-
Excerpt: " . . . What is important about our findings is that they demonstrate the presence of immunologic abnormalities in PLS and imply the existence of a disease process affecting the immune system in a substantial number of patients." end quote.

We've KNOWN this for a long time. But, just how is it already called PLS ? We know in chronic lyme that, yes, immunologic abnormalities are profound. Nothing new there.

But, guess what? Adequately treat the infection and coinfections, and the immune system gets better. Support the body during treatment and even better results can occur.

This suggests that we can find out more about the disease by studying the patients' immune response more closely. We might also discover specific new biomarkers to aid in the diagnosis and follow-up of patients through this approach. "

Tossing around the term "PLS" - is just wrong.

If doctors really wanted to "to aid in the diagnosis and follow-up of patients" whey would read what the ILADS researchers have been studying and writing for years now.

You guys are out to prove "PFS" by ignoring the stealth nature of borreliosis, its cyst form, biofilm, etc. AND - discounting the other tick-borne infections. Lyme rarely travels alone. To study lyme, the full range of tick-borne infections must also be included.

Please, read from outside of the closed doors at the IDSA.

" . . . carefully-characterized patient and control populations came from Dr. Klempner, Dr. Wormser . . ."

You might look outside of that group if you REALLY want to learn about lyme. That group is soiled. The blood of many lyme patients is on their hands. Hundreds (if not thousands) have died because of the IDSA. Thousands of lives have been horribly altered forever because of this group. That loss is criminal.

There is a lyme memorial project. You should take a look at how many lost their lives because of the IDSA. And you want us to believe them now - just more tricks that will cost more lives.

I am sure (or hope) you are a fine person and this is not a personal criticism. But the base of this research project has many errors that will cost lives. If you are a fine human being, I truly hope you become educated in this area - and that will take far more than believing anything that Dr. Klempner, Dr. Wormser tell you. They have no clue. Literally, no clue.

Even if not for your own life, if there is even one person whom you love or respect, please learn the REAL truth about lyme. You won't find it at the IDSA.

If you want to learn about lyme, get to know thousands of lyme patients - in person. You'll see that they cannot be reduced to the measure of this "PLS" fairy tale by any stretch of IDSA's skewed imagination.

ILADS LLMDs (Lyme Literate Medical Doctors) have known for years about "immunologic abnormalities" and they also understand a great deal about why. I hope you can talk to some of them. I hope you can read some of their papers. I hope you can come to know what lyme really entails.

Is there more to learn? Of course. ILADS does not have all the answers but they are light years ahead of the IDSA in understanding the complexities involved. Light years.

I assume that anyone who writes a formal paper such as the one in question has done a thorough review of the literature.

However, it seems that whoever is paying you for your work thought that not important and apparently shut you off from the full measure of work by ILADS researchers, doctors, authors.

You can reads many solid articles here:

www.ilads.org

ILADS - International Lyme and Associated Diseases Society.

=========

Lastly, while the thoughts that this recent study is geared to further deny treatment for lyme, promote the used of steroids or other drugs can be damaging for those with infection or push for some new vaccine soon to be announced . . .

. . . I do reach out a hand in hopes that you will, in fact, be open to learning the truth about lyme and other tick-borne and stealth infections - as well as recognizing the difference between those working toward the demise of patients (the "lyme branch" of the IDSA)

and those who are working to help find better tests, better treatments (pharmaceutical as well as supportive / complementary - all geared to each patient's individual needs at all points along the way)

and, hopefully, a cure- not just for lyme - for all the stealth infections in this complex set. We have to do better. ILADS is working on just that - doing better.
-

[ 04-02-2010, 10:46 PM: Message edited by: Keebler ]

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Keebler
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-
www.lymememorial.org

The National Lyme Disease Memorial Park Project

- dedicated to all who have experienced the ramifications of Lyme and other tickborne associated diseases.
-

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Pinelady
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Please know lymememorial.org just touches the

finger tip that is pointing to Lyme deaths. For all those diagnosed as unknown, for all those

diagnosed and allowed to die from a so called

autoimmune disease by denying a test is criminal

indeed. You would think we would have learned

something through past history of the AIDS

epidemic. No you can't get it in the blood, no

you can't get it unless your gay, no you can't

have 6 organisms in your body and not be

symptomatic. We have not since 1975.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Carol in PA
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quote:
Originally posted by invstgtr:

I'm the lead investigator of the study being discussed.

Hello, welcome to LymeNet.

If you are wondering why these people are getting so upset about this, please read

Cure Unknown: Inside the Lyme Epidemic
by Pamela Weintraub
http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378130/

This book explains so much.
The background information is similar to the AIDS problems and CFIDS.


Carol

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seibertneurolyme
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Investigator,

I don't know if you are who you say you are. But I will give you the benefit of the doubt.

Here are some more ideas for future research that might actually benefit lyme and tickborne disease patients --

1) How about repeating your study with patients who are seronegative but have clinical lyme diagnoses -- I bet your results would be virtually identical

2) I would love to see even one journal article that lists tremors as a symptom of neuroborreliosis -- the vast majority of tickborne patients have various types of tremors and muscle twitches at some point during their illnesses -- everything from restless legs to Parkinsonsian tremors to myoclonus to dystonia and the list goes on

3) How about correlating the presence of these anti-neural antibodies as to whether the patients actually have abnormal EMG's or numbness or tingling or other objective evidence of nerve damage

4) There is a large subset of tickborne illness patients who have little or no arthritic or pain symptoms but are completely incapacitated by other neurological symptoms such as seizure-like episodes, movement disorders of all varieties, and varying degrees of encephalopathy (often only validated by brain SPECT scans) -- these patients frequently have been undiagnosed for years -- these are the type of patients who could most benefit from new tests and methodologies but no one is researching them because often the sickest patients are seronegative at the start of treatment

5) I am pretty sure there are no journal articles that mention patients with 3 or more tickborne infections -- yet there are numerous patients with 3 or more tickborne infections -- and probably even more if the tests were available to test for all the strains of bartonella for example.

These are just a few ideas off the top of my head.

If you are serious about working with the lyme community then let us know how we can help you further your research.

Bea Seibert

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migs
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Come on everyone, take it easy!

This man should be praised for not only his research, but coming on this site and posting that message.

He is doing beneficial research for the right reasons. He isn't your personal crusader and won't tackle all tick-borne illness issues in a single study.

Thank you Mr. Armin Alaedini.

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TerryK
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Migs - Anyone who chooses to post here will get honest opinions from other posters. That is the nature of this type of forum.

This paragraph and more in the study text seems to indicate that invstgtr is being disingenuous or has not read the research available on persistant infection.

"Considering the lack of evidence for the presence of live spirochetes in PLS patients who have received recommended antibiotics, persistent infection is currently not thought to account for the symptoms of PLS by most investigators (Baker, 2008; Feder et al., 2007)."

The truth of the matter is that it is hard to detect live spirochetes in any Lyme patient, chronic or not. Anyone who has scratched the surface on testing issues understands that there are many reasons for this that have nothing to do with whether the patient actually has live spirochetes in them or not.

My understanding is that this paragraph would apply to all strains of Borrelia burgdorferi
http://www.ncbi.nlm.nih.gov/pubmed/15895947

"Direct detection of Borrelia burgdorferi sensu lato by culture is fastidious, time consuming and of a low sensitivity. Molecular methods (polymerase chain reaction) are very specific but limited by a low bacterial burden in the tissues."

The CDC has been handed plenty of proof of positive PCR results in patients who have been treated IDSA style and beyond as well as live spirochetes recovered at autospsy from victims who have been "adequately" treated.

There are numerous studies where animals have been sacrificed and live spirochetes found after standard IDSA treatments. I don't think this includes all of the studies but here is a start on persistence of infection.
http://www.lymeinfo.net/medical/LDPersist.pdf

Based on my own experience in going from all over body wracking pain and a very long list of symptoms to a much more livable level of pain and a much shorter list of symptoms, I can say without a doubt, that I needed long term antibiotic treatment and I still do since I am continuing to improve as time goes by. You will find many like me. I would still be suffering horribly if the IDSA had their way.

Bottom line is that many of us know from first hand experience that we improve greatly with long term antibiotic treatment. This applies to many of our Lyme doctors as well.

I have only read part of the study because 1/2 of the file from the whole study that I recieved was corrupt. I'll have to try to get the rest of the study sometime in the future.

I'm not sure that I understand the Cross-reactivity section of the study. Perhaps Invstgtr can enlighten us?

I've edited this because after studying this further I don't think cross reactivity refers to testing.

Are you saying that anti-borrelia antibodies are attacking neural proteins?? So our antibodies are attacking us? I've heard some Doctors postulate that borrelia inserts it's DNA into our own which causes our body to attack.

I've also read and been told that patients with lyme who develop autoimmune disease often get rid of it with treatment.

3.4. Cross-reactivity of anti-borrelia antibodies toward neural proteins

In order to assess the extent of cross-reactivity of the anti-borrelia
antibodies towards brain proteins using our system of antineural
antibody detection, we examined the binding of affinitypurified
anti-borrelia antibodies to brain proteins by one- and
two-dimensional immunoblotting.

The purified antibodies bound
to approximately 20 different protein bands (Fig. 4A), demonstrating
the potential for substantial cross-reactivity of the anti-borrelia
antibody response towards neural proteins. The cross-reactivity
was confirmed by immunohistochemical analysis, which showed
anti-borrelia antibody binding to neurons and glial cells of the
cerebral cortex and the DRG (Fig. 4B).

Looking forward to hearing from you about this Invstgtr.

Terry

[ 04-04-2010, 03:12 PM: Message edited by: TerryK ]

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TerryK
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Invstgtr - This may interest you and others. From "Cure Unknown" written by a Science Journalist and editor of Discover Magazine.

Beginning on page 347 Weintraub (the author) explains that MacDonald studied the brains of 10 alzheimers patients.

"In the cells of seven of those brains, he tracked a DNA sequence apparently part human, part spirochete, a deadly ungodly hybrid combining Borrelia and us. What he has found MacDonald asserts is evidence of a "transfection", in which the proteins causing illness are no longer manufactured by B. Burgdorferi spirochetes but by the genes of the patients themselves."

[ 04-04-2010, 09:08 PM: Message edited by: TerryK ]

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Keebler
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-
http://tinyurl.com/5crsjv (through Amazon)

Cure Unknown: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

Author's site: http://www.cureunknown.com

=========================

http://www.amazon.com/Bakers-Dozen-Lunatic-Fringe-Paradigm/dp/0965458067

The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm? - by PJ Langhoff

Review at:

http://www.ilads.org/news/Educational/35.html

Excerpt: . . . This Book Exposes ``Junk Science,'' Conflicts of Interest, Disease Guidelines Affecting Millions Critical evidence revealed about IDSA guidelines, science, researchers examined in recent Anti-Trust Investigation . . . .

========================

http://www.underourskin.com

Documentary: UNDER OUR SKIN

==========================

www.jneuroinflammation.com/content/5/1/40

http://www.jneuroinflammation.com/content/5/1/40/abstract

Journal of Neuroinflammation 2008, 5:40

25 September, 2008

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis

=========================

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)
-

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lauirel
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Carol in PA, and TerryK,

First Carol, thank you for the link. I will be getting this book as well.

TerryK,

quote:
Beginning on page 347 Weintraub (the author) explains that MacDonald studied the brains of 10 alzheimers patients.

"In the cells of seven of those brains, he tracked a DNA sequence apparently part human, part spirochete, a deadly ungodly hybrid combining Borrelia and us. What he has found MacDonald asserts is evidence of a "transfection", in which the proteins causing illness are no longer manufactured by B. Burgdorferi spirochetes but by the genes of the patients themselves."

I used the search function within this forum looking for more information on this particular subject.I have basically been to many sites over the course of today, and I am just reading the same thing over and over again.

In this book mentioned by the both of you, is this particular subject expanded to more detail? I have questions concerning transfection, such as if it can and does occur within the fatty tissues of the brain and the neuron cells, then could this type of transfection, or the combining of the Bb DNA with our own DNA occur is other lipophillic tissues or nerves within the body?

How is transfection addressed? Would that not entail DNA repair? How is this accomplished?

Thank you so much for any additional information you can give me. And your patience.

LaurieL

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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TerryK
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lauirel

I'd have to go back and re-read the chapter but I'm pretty sure there is no real detail in the book.

I found this just now in response to your question. It looks like it probably goes into more detail than anything else I've seen but I haven't read it thoroughly yet. It's late and I need to wind down so I can go to sleep. I hope this helps answer your questions.

http://stcatherines.chsli.org/transfectionpaper.pdf

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lauirel
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Yes, thank you. I did get ahold of that address.

It isn't talked about much elsewhere, and I know he did stop doing this research. But I thought he again restarted his research in 2006?

What a huge finding and a shame he stopped.

LaurieL

--------------------
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, its the only thing that ever has.

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Keebler
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-
invstgtr - Armin Alaedini,

I hope you have been able to come back and look at the posts and links above. More links of interest regarding the effect of IDSA guidelines and definitions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/92914

Topic: Sweden Fatal Case- So Uninformed.

Neuroborreliosis fatalities - Many medical abstracts from PubMed

-

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migs
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I know many here are bitter and for good reason but the daggers come out too easily sometimes.

http://www.columbia-lyme.org/research/scientific.html

Armin Alaedini presented at the above conference...see him discussed about 15 sentences from the top.

This is now the second time I have heard of him. He is working to unravel the mystery that is ruining my life, and many others.

He deserves praise and not to be pounced on with ignorance.

[ 04-06-2010, 12:57 AM: Message edited by: migs ]

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Keebler
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-
No reply is at all pulling out the daggers at anything more than the IDSA's attempt to erase the term chronic lyme, deny persistent infection and declare it "PLS" - post lyme syndrome - beyond treatment.

Yes, there are immune problems and no one is denying that.

The huge concern is how the term "PLS" is now so easily tossed about by the IDSA, as if it has been officially sanctioned, is inappropriate for persistent infection and a death sentence for patients.

To say that patients with symptoms after the normal IDSA treatment then have "PLS" - that is the danger. The IDSA treatment guidelines are being seen as the magic cure. If that doesn't work - then it has to be only immune system and not possibly persistent infection? That's the danger.

We are just raising a red flag in the name of all those who got the typical IDSA treatment and are no longer with us in one way or another.

Will "PLS" now become the new "CFS" ? That is the concern.
-

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migs
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Keebler,

I do definitely agree with that. PLS is pure fantasy!

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TerryK
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Many good points as usual Keebler.

Migs - Anyone reading this study reads right away that there is no evidence of persistant infection which is simply untrue. That is the kind of rhetoric that you hear from IDSA guideline authors. Any researcher who wants to remain impartial will not use Wormser or Klempner to help pick study participants or set parameters for their study.

Check out Alison DeLongs talk at the IDSA hearing of last July. You will see many examples of why we are very leary of Klempner and Wormser.

Here is the link to the IDSA hearings broadcast that was required to be available on the internet per the settlement between IDSA and Attorney General Blumenthal. It will be taken down in July.
http://lymewebcast.idsociety.org/

Here are written transcripts if you find them more useful than the video.
http://www.idsociety.org/Content.aspx?id=15026

One example of a study done by Klempner that the guideline authors used to claim that antibiotics were of no benefit was in part measuring improvement in mental speed. The study was designed in such a way that in order for improvement to be considered significant, lyme patients would need to perform better than healthy controls.

Another of Klempner's studies that supposedly met the highest level of evidence added patients lost to follow-up to the failure group which of course really distorts the results.

So YES, I want to see more research but good research by authors that don't have an axe to grind such as supporting their previous position that denies the existence of Chronic Lyme Disease.

Terry

[ 04-07-2010, 10:38 AM: Message edited by: TerryK ]

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Tracy9
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Keebler, excellent post above right after investigator.

When I read this:

"What is important about our findings is that they demonstrate the presence of immunologic abnormalities in PLS and imply the existence of a disease process affecting the immune system in a substantial number of patients. This suggests that we can find out more about the disease by studying the patients' immune response more closely. We might also discover specific new biomarkers to aid in the diagnosis and follow-up of patients through this approach."

I see which came first, the chicken or the egg. I think Lyme came first, then caused the autoimmune issues. I feel this study is trying to say those with Lyme that doesn't go away with 28 days of treatment has some pre existig bio marker autoimmune something or other as a way to back up the PLS theory, when in reality, this stuff was caused by the Lyme.

This scares me, and feels like another tactic of the IDSA to try and spin the facts. They are trying to take something Lyme CAUSED and say it CAUSED Lyme.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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treepatrol
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quote:
Originally posted by Bugg:
Hey Guys-

Abhishek Chandraa, Gary P. Wormserb, Mark S. Klempnerc, Richard P. Trevinoc, Mary K. Crowd, Norman Latova and Armin Alaedinia, Corresponding Author Contact Information, E-mail The Corresponding Author


b Division of Infectious Diseases, Department of Medicine, New York Medical College, Valhalla, NY, USA

c Department of Microbiology, Boston University, Boston, MA, USA

d Division of Rheumatology, Hospital for Special Surgery, New York, NY, USA
Received 30 November 2009;
revised 20 February 2010;

Anything with wormser , klempner is totally bull crap!!! [Mad]
Disregard please
Thanks

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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Pam Weintraub
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Only just now have I noticed this thread, and I want to respond because my book is mentioned.

Off the bat, I do not see a necessary conflict between the MAJOR thrust of this study and anything in CURE UNKNOWN. Whether you call the problem chronic Lyme or Post Lyme, the fact remains that many remain ill. Significant evidence points to remaining spirochetes after treatment, however, these organisms remain quiescent and difficult (or even impossible) to erradicate by antibiotic.

The theory that these quiescent spirochetes could be provoking an immune problem such as described makes sense --and if one could treat the immune problem, the remaining spirochetes might not be a problem. After all, we all harbor foreign microbes, even pathogens, in small number. Antibiotics have kept many Lyme patients afloat but for those who remain ill despite long-term treatment, clearly these treatments have not brought a CURE --and this is true even if the face of evidence that a low-level chronic infection may be driving immune cascades.

For such patients, immune therapies may be the ticket --and they may be the ticket whether chronic infection is a cause or not. This kind of research can transcend the chronic-immune debate.

Pam Weintraub
CURE UNKNOWN

--------------------
Pam Weintraub
Cure Unknown
http://www.cureunknown.com

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Keebler
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-
Pam,

Thanks so much for your reply. I understand what you are saying and it's valid, of course, to look at the immune system changes.

However, one huge concern is that those who are so fast to label a patient "post lyme" often don't fully address the infection as well as they should at first. Is "post-lyme" after a couple weeks of one single abx with no attention to other tick-borne (or other tick-borne &/or chronic stealth infections)?

That's when the IDSA "experts" want to call it "post-lyme" - long before proper anti-infective treatment has been explored.

As well, some of the "experts" whose work is lauded as so grand is absolutely substandard. Basing new research on their work leaves out a vast amount of valuable detail about lyme and other tick-borne infections.

Absolutely, we need to look at all the mechanisms behind the damage done by lyme. However, we need researchers who have studied all they can about lyme, not just the writings from the IDSA as that is dangerously limited.
-

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lightparfait
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I see that each person that is involved in the study does not have the same set of issues...either pre or post lyme....in order to make a blank statement about what is causing chronic lyme.

It is very obvious to me that we all have something besides lyme...causing our immune systmes to work overtime...and for some...lyme is the tipping point.

For others like me...it was mercury from dental amalgams that caused my immune issues initially. Lyme got my attention...and got me working on finding the root of why I could not get my immune system to keep lyme at bay!

For others it is viruses or bacterias in overload pre or post lyme infection causing their immune jrespnse.

For others it is parasite infections that were on overload.

for others it is candida...or possibly organ issues.

The one ting for sure...is that we need to look at the total package...not just lyme. Lyme is the add on to other things for those with chronic lyme.

There are plenty of people who have lyme and do fine with basic lyme treatments...they are only left with the lyme antibodies and have no more symptoms after treatment.

The rest of us have to look at it in a different way...and know there is somethng else holding onto the lyme...and find that.

Unfortunately, it is indivdual, and no research groups are given money to research the connections to other things. People on this site for a long time all have other issues...with the lyme that lingers. No drug will ever clear the body of the original problem...they only create a new balance when used regularly, but drugs can give those symptom reduction...with other symptoms from the drugs.

Those who find the original issues and work on them, seem to get into remission much faster. This is what I witness with my lyme firends and experience first hand with my neighbors and family members.

We need to give financial support to researchers who will work on the total body and total package of individual symptoms ...and get research participants who have very similar body dysfunctions so the study has validity and actually helps heal someone.

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lightparfait
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I see that each person that is involved in the study does not have the same set of issues...either pre or post lyme....in order to make a blank statement about what is causing chronic lyme.

It is very obvious to me that we all have something besides lyme...causing our immune systems to work overtime...and for some...lyme is the tipping point.

For others like me...it was mercury from dental amalgams that caused my immune issues initially. Lyme got my attention...and got me working on finding the root of why I could not get my immune system to keep lyme at bay!

For others it is viruses or bacterias in overload pre or post lyme infection causing their immune jrespnse.

For others it is parasite infections that were on overload.

for others it is candida...or possibly organ issues.

The one ting for sure...is that we need to look at the total package...not just lyme. Lyme is the add on to other things for those with chronic lyme.

There are plenty of people who have lyme and do fine with basic lyme treatments...they are only left with the lyme antibodies and have no more symptoms after treatment. Also there are more amer\icans who just have the lyme antibodies and never get a symptom...like two in my family I tested at Igenex. Never a symptom for them, but for the other two...every symptom...that now in remission with correct treatment but more importantly correct detox!

The rest of us have to look at it in a different way...and know there is somethng else holding onto the lyme...and find that.

Unfortunately, it is indivdual, and no research groups are given money to research the connections to other things. People on this site for a long time all have other issues...with the lyme that lingers. No drug will ever clear the body of the original problem...they only create a new balance when used regularly, but drugs can give those symptom reduction...with other symptoms from the drugs.

Those who find the original issues and work on them, seem to get into remission much faster. This is what I witness with my lyme friends and experience first hand with my neighbors and family members.

We need to give financial support to researchers who will work on the total body and total package of individual symptoms ...and get research participants who have very similar body dysfunctions so the study has validity and actually helps heal someone.

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Pinelady
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quote lightparfait: "We need to give financial support to researchers who will work on the total body and total package of individual symptoms ...and get research participants who have very similar body dysfunctions so the study has validity and actually helps heal someone."

You are so right but first we have to show them we need federal funds for everything Lyme.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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