Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Sue, Lyme and CFIDS don't seem all that different. In fact, aside from a poitive lyme test they seem just the same. At least you have one serious known trouble maker, (I don't think that there are many that would try to argue that the lyme spirochete is benign) and you can try to kill it. I only suspect that I have Lyme and am about to start another antibiotic induced urine antigen test, but I've already decided that if I'm positive I will spend time on CFS lists. The Lyme community just doesn't have the same plethora of treatment options for the intricacies of biological disorder that these chronic diseases bring about. I imagine that you lan to stick with us here anyhow, since you have so far. I just wanted to comment on this since I'm still on a lyme kick. I think the two communities have a lot to offer each other. I thought it was interesting that in a post on apitherapy today it said that bee venom is effective against the lyme spirochete. Many have thought that MS might be caused by a spirochete. E. Can you tell us what tests and symptoms were positive in your dx? What was your treatment and what was the outcome? Are you as sick as you were a year ago? In the spring, our daughter tested positive on 2 out of 5 serial PCRs. Some have told us that's the gold standard--even better than a Western blot IgG. (I've seen you on the Lyme list recently.) It has taken a while to sink in--she has Lyme, not CFIDS. Best, Sue B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Dear Steve, You wrote: > >Can your typical laboratory do the 5 PCR tests for Lyme or does it have to >be done at a special lab? If so, do you have the name or phone # of the >lab? Steve B. I would guess that no, your typical laboratory cannot do the 5 PCR tests. The laboratory that the Lyme specialist had us send samples to is: Medical Diagnostic Labortories L.L.C. 133 Gaither Drive, Suite C Mt. Laurel, NJ 08054 856-608-1696 or 877-269-0090 www.mdlab.com The Lyme specialist tested our daughter for Lyme more to rule it out than to rule it in. He said to be pretty sure that she didn't have it he would need 20 tests, but to start he would order a series of 5. We were all shocked when 2 came back positive. They also test for Ehrlicia and Babesia by PCR. Our daugher was negative on all 5 of those. A few days ago, I spoke to a customer service representative at Medical Diagnostics Laboratory about serial PCRs, and this is what she said: Yes, contamination can occur when a large lab that does not specialize in it performs this type of testing, because the lab might not provide ample precautionary measures. We specialize, and we provide every measure possible to prevent contamination of tests. We do not reuse test tubes. We do not reuse tubes of any kind. We do each step in the whole processing of the specimen in a different, designated area of the lab We work under special hoods to prevent cross contamination. We are CAP(?) accredited, and are licensed by New Jersey, Pennsylvania and Florida for this testing. Doctors send us specimens from all over the world. If your primary care doctor has questions about our methods and would like to speak to Dr. Morticai (sp?) he's available and I can set up a time when he can speak with your physician. I can also send your doctor copies of every license that we have. Even if the Borrelia is present in the body, the reason it's not positive on all samples is it's not always present in body fluids, so that's why they recommend serial testing. Best, Sue B. upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Dear Sue, Thank goodness for a diagnosis!! And good that she got one as she has been ill for a long time, making dx more difficult. Lyme is taken more seriously in the East, but know there are problems getting the long term abx necessary. How is your daughter being treated and how is she doing? I am SO glad to hear this news because now she can be treated! I tested + in 94 on Western Blot and took antibotics for about 6 monthes. Then I had a retinal infarct and it was thought I had lupus, so I discontinued the treatment ( not smart). From this list info, I thought it prudent to be retested and again tested + on the LUAT. WB was not repeated as this LLMD thought LUAT was better indicator and because of former +WB. In dealing with cardiac and mito issues, treatment has been put aside for the moment although I do still take flagyl and either Cipro or Biaxin. LLMD just said to make appt when I know about muscle biopsy which I will have done in Cleveland on Halloween - think I will dress up as a hospital pt! Lyme is definately part of the picture and I understand this can damage mitochondria, so who knows what causes what? If it is genetic, then I will be dealing with multiple issues, but better to know. It is amazing to see where the dx of CFS can ultimately take some of us. Please keep us updated on her progress. I'm sure this must be a great relief to you. Take care, Christie From: rhbailey@... Dear Christie, You wrote, " I was dx'ed and treated for lyme as have others. " Can you tell us what tests and symptoms were positive in your dx? What was your treatment and what was the outcome? Are you as sick as you were a year ago? In the spring, our daughter tested positive on 2 out of 5 serial PCRs. Some have told us that's the gold standard--even better than a Western blot IgG. (I've seen you on the Lyme list recently.) It has taken a while to sink in--she has Lyme, not CFIDS. Best, Sue B. Quote Link to comment Share on other sites More sharing options...
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