posted
Just got Lab Corp results (still waiting for IgenX results). Boy, I am confused! IgG neg, IgM positive, three bands present P41(A), P23(A), P18(A). What does this mean really? LLMD emailed me results and an invitation to participate in a 6 month double-blind study using Plaquenil (and one abx: zithro, Biaxin or Ketek) and placebo because I had been diagnosed by duck as fibro/CFS. He says I test supportive of the diagnosis for Chronic Lyme. I also have Dysautonomia.
Anyone care to comment?
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
You might get the placebo.
Personally, I would rather treat the lyme disease than take my chances. Nice to advance science, but not when your health is at stake.
Posts: 2557 | From home | Registered: Aug 2006
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22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
Dr C of MO: "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." =======================================
be sure to "refresh" your screen
Be sure to read the entire link above!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
This sounds like an important study, but I am wondering if this is to distinguish lyme from CFS, then maybe it should be using seronegative cases, not people with specific markers for lyme disease. And maybe the people who have fatigue should get whatever the treatment is for CFS, rather than a placebo. (Some might say the treatment for CFS isn't any better than placebo?)
That way he would not encounter resistance from patients who feel they are not getting any treatment and would therefore perhaps not agree to join the study. If, however, there was really no lab evidence for lyme, and the symptoms looked as much like CFS as lyme, then those would be good cases to sort out in a study, IMO.
Studies of this kind are to be applauded, especially if they end up getting published in medical journals.
Posts: 8430 | From Not available | Registered: Oct 2000
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The hard part of any study is that you may be the control group. However if you are strong enough to endure the challenge then you may be opening new doors. Not to mention giving the amo that attornies (sp) need to defend our docs..
If it where me I would only agree if they would promise to aggressively treat me if I fell into the control group...
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
What about co-infections? If you doc is unaware of other TBD's then even if you get the treatment you will stay ill until they are addressed. This result may give amo to the ducks.
Maybe you can consult a llmd to participate in this study as well.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
The study would be "two arm", one group would receive Plaquinil (sp?) for 3mos, then placebo. The other placebo, then Plaquinil. I am waiting to have some other questions answered re: is one of the following abx going to be used, Zithro, Biaxin, KeKet (sp?) I assume that he will since others who use Plaquinil are also on abx.
My LLMD does believe that the tests show I am IgM positive and that I am Chronic Lyme.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
As I understand, with these studies, you cannot take anything else. I would not want to risk geting in the placebo group and having my condition worsen.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I already feel as if I am in a Study....
So many different variations of meds to try to find the "right" cocktail.
I wouldn't volunteer for a study.....but that is just me.
I have two small children to take care of....and my health is the most important issue at stake.
From what I understand, you would get the med either first, then followed by placebo
or get the placebo first followed by the med.
I go for the Meds, meds, meds and no placebos.
I would thank my LLMD for his consideration of me, but No Thanks!!
Hope you make the right decision for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You asked for comments.
I wouldn't touch Ketek with a ten foot pole.
Not so for the other abx.!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Greatcod
Unregistered
posted
I would want to know the size of the study--how many participants, and the source of funding, and the authors-just your doc or more. The larger the study is, the more likely it is to have an impact. I would also ask about treatment subsequent to the study--what can you count on if you happened to get the placebo. If you got sick very recently, I think it would be a mistake to risk forgoing treatment. If you have been sick for a period of years, its a somewhat different call a possible six month delay might be more tolerable. Give the decision the weight it deserves. Some people here seem not to recognize the enormous progress that medicine has made is due in large part to medical study participants who understood the risks, and gave of themselves for the betterment of humanity.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The choice is yours.. but I would like to mention...
Is this a "study" that WILL be published?
Sometimes in-office studies are done which don't make the big time (quite often)... and that is nice for the doctor of course in their personal quest for learning.. but the risks to you need to be considered in that light.
You might also ask who is funding it? I have seen some tampered results in studies in the past.. and that is not only unethical.. but is an additional risk to you and others who will have to go by those results in the future.
Be sure to keep your own accurate records.
I wish I knew what doctor it was... as I think that can make a difference.
posted
Thanks guys for all your imput! Answers to some questions raised: The study would be monitored (and the health of the participants) by an outside LLMD. It will be published, he is waiting for the final grant approval (plans to start 6/07). My LLMD is a widely respected Internist (who specializes in Lyme due to an interest he had in understanding fibro and CFS patients) and a Prof at a "Major" Medical University.
I have been a Lymie for at least two years, probably more. I will be on meds 3 months, placebo 3 months. There will be a lot of testing done through out the six months. If at any time I react to the meds in a way that concerns the monitor, I would be pulled off or meds changed.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
I would want to ask this LLMD - Do you follow the Guidelines written by IDSA (Infectious Disease Society) OR the Guidelines written by ILADS (International Lyme & Associated Diseases Society)?
Same question to the "outside LLMD" who will be monitoring.
You said your LLMD is "a widely respected Internist...& a Prof at a 'Major' Medical University."
It's late & my Lyme brain isn't working too well, but I can't recall many LLMDs that fit this description.
In what state is the LLMD practicing? Another clue may be the dose per day of the abx.
My concern is that if I were in your place, I would want to be sure that the two LLMDs are really, truly LLMDs.
Compared to many of us, Lyme for 2 years still seems pretty early in the disease. The study won't begin for another 2 months & then will last 6 months.
If the abx are not the best choice for your LD, then 8 months will be gone before you can try other treatment options. Sometimes several have to be tried before finding what helps an individual.
All things considered, I would err on the side of caution.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, I agree that some people don't belong in clinical trials, but a conscientious doc will know when a patient has too many issues to get involved, assuming the patient has been upfront with him/her.
I don't think the trial can be faulted on the identity of the doc; in fact, the credentials are just what would be the right background for such a study and this doc is known to the lyme community, if not to everyone who posted on this thread.
So, the real issues here are the design of the study re lab confirmation of lyme disease, and the types of patients who best fit the study purpose.
This is just the kind of study we need in several areas, in the diseases that lyme mimics and is frequently misdiagnosed as.......parkinsons, alzheimers, cfs, fibro, als, etc. done by someone with an open mind looking for the truth.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I believe he follows ILADS, he gives very high dosages of abx, only decreases if patient has trouble with it. I have read some of his other papers, they were not NIH. He is treating several families I know, they all swear by him. Some have Bell's Palsy, some with CD57 scores under 30 (but he does not depend fully on any "test").
I think he said that he believes that Lyme goes into remission, and is actually never fully cured. That illness and stress will cause it to reactivate.
He believes in treating the patient, not the disease (if that makes sense to everyone). He believes that a lot of patients are Chronic Lyme, masquerading as Fibro, CFS and some others I can't remember.
That is all I think I can answer. Oh, about the Dysautonomia, he hopes to see an improvement due to the study. I believe that I have been Dysautonomic all my life, but that the Lyme has aceserbated it.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I can't answer what you should do but I know many folks who see this llmd. He is well respected by the community of doctors in northern VA and open to working and learning from other ILADs llmds.
I know this research is for publishing and not just internal use. He attended Hope to Heal last year and I imagine he will be there again this year.
He has already written a paper on the link between CFS/fibo and lyme.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Careful... don't tell. I would not want to open him up to any kind of trouble. Thanks for all your emails, nice to know their are people like you out there. I hope to be as helpful as soon as I know more.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Let LLMD be the guinea pig.
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