posted
Does anyone know if there is a single doctor in the United States who will do biopsies of various types of tissue (especially brain) to try to isolate the spirochete or stain for it, culture it, etc.? I am interested in offering myself up for this sort of thing, for a variety of reasons, but I can't find a single medical researcher who has an interest in doing this, or even considering the possibility. Very frustrating. It seems that if the spirochete likes to hide out in body tissue as opposed to the bloodstream, this would be a possible way of confirming active or incompletely treated infection after antibiotic therapy, which I have had extensively. I have felt very good while on IV antibiotics, or in the weeks following a course, but then I relapse. There just has got to be an active infection; an autoimmune disorder wouldn't act in this way, ie, things wouldn't improve and then relapse, etc. I am sure many of you are familiar with this situation, but damn, I can't find a single person who is willing to try this, or even get an answer.
Posts: 45 | From Stillwater, OK, USA | Registered: Feb 2004
| IP: Logged |
posted
Here's my reasoning for tissue biospy; I know it's time consuming and may not yield a positive result even in the presence of disease, but: I have had positive blood tests, SPECT scan, etc. However, now that I have had two long term courses of IV antibiotics, positive blood and CSF tests have lost meaning, except for PCR which in any event has never been positive for me. It is not for insurance purposes, ie, proving that I need additional therapy. I have not had a single problem with insurance thus far, which has surprised me but is probably due to fact that I use a specific type of insurance in an area of the country which doesn't report much lyme disease. I guess mostly it's for my own edification. Actually, that's not entirely true. You see, I would like to pursue a certain legal course against certain individuals. A positive tissue biospy or culture of the organism cannot be debated AT ALL. Every other test result I have can be debated. I am looking for undeniable proof (A) that my problems are due to borrelia infection and (B) that the infection has persisted despite lengthy IV therapy. This level of certainty would make the legal course I am considering far easier. It's more complex than that. My uncle was a medical school dean for 15 years and is a prominent medical researcher and figure in the medical community, including the AMA. He actually met with president clinton in the oval office to lobby against health reform. So I am also wanting to demonstrate to him what is going on, in a manner which he would not be able to debate. I just feel like there are several reasons to consider this. I am more than willing to have people stick needles in my eyes or anywhere else if I thought it would possibly advance a cause for which I suffered hideously for many years. I read a lot of medical literature and I can no longer sit back and tolerate the rantings of certain scientists who have attained prominence in the medical community but who in fact are liars, corrupt people who are being allowed to perpetuate what has got to be one of the worst instances of scientific malfeasance in human history.
quote:Originally posted by Mathias: I was told you I could get my brain biopsied for neuro lyme in Bethesda, MD by an ID.
That was right before he dismissed me (without even taking blood) and told me the neurological lyme disease is extremely rare!
I have to agree with Pitnum. If you have positive tests, what do you have to gain?
The only way that I would agree to a biopsy would be to rule out other conditions.
Posts: 45 | From Stillwater, OK, USA | Registered: Feb 2004
| IP: Logged |
posted
I now understand where you are coming from with the tissue biopsy. The reason of legal recourse makes sense, particularly since you have never had a positive PCR.
I don't know why insurance companies, Drs, etc. hold so much stock in PCR's but are so quick to blow off all the other lyme tests. It is my understanding that PCR tests yield high false positive and false negative results. So, what do you believe.
This is why so many people start second guessing themselves, the docs and their diagnosis. Until there is a fool proof test to diagnose Lyme, everyone has to be their own advocate!
Good luck if you decide to choose the way of biopsy. I hope it provides you with the information you need.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic