Topic: Major Study Just Released About Chronic Lyme
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
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
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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.
"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.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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."
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, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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.
posted
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, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I do definitely agree with that. PLS is pure fantasy!
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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/
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.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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!!! 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.
posted
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lightparfait
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Member # 22022
posted
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.
Posts: 1009 | From NJ | Registered: Aug 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
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.
Posts: 1009 | From NJ | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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