Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Kate, no matter how much we see, it is hard not to remain naive, to continue hoping against the whole weight of our experience that such principles as respect for data, the Hippocratic oath, and common human decency apply, where Lyme disease is concerned. I have had a rough education in how far from true this is. But I was " naive " enough to be unprepared last Friday when authorizations for PICC insertion, IV treatment and a nuclear brain scan were reversed by a single individual who happens to the be a Medical Director of my MediCal HMO. Not one but three distinguished physicians had endorsed the urgent medical necessity of these steps. Like the data you took to your ID doctor, the views of my physicians and the long list of objective findings supporting them were simply ignored. Getting treatment under these circumstances means tapping resources that are scare, inadequate, and hard to find. My family and I are engaged in that process. I would be happy to compare notes with you offlist, in case we have become aware of something that might help you and your son. Your friend, > Hi folks, > > Things are not going well here in Halifax, Nova Scotia as far as Lyme > treatment goes. I just got final word from the ID doc today that she > doesn't see enough evidence that I have Lyme disease and that in any > case, I have already had enough antibiotics to kill it off (even though > I never have had the high dose antibiotics Lyme docs recommend) etc. > etc. > > Well, I guess that happens to most Lymies when they see ID docs, but I > was naive enough to think that if I presented her with a notebook full > of studies and pointed out various inconsistencies like the CDC > claiming that there's no evidence that Lyme bacteria persists when > there is a bibliography of 67 such studies available on the internet > (plus more not on the list), she would see reason. But no, it is > basically her studies versus my studies and hers win because she is the > doc. > > Also, she believes that my WB IgM is a false positive due to > cross-reactions, even though I have Lyme-specific bands according to > the Lyme doctors. (Plus my son has even more such Lyme-specific bands > than I do.) The doc also believes that except at the very beginning of > the disease, the standard ELISA and Western Blots always show a robust > reaction if the person has Lyme. > > My myriad symptoms, according to her, indicate CFS, Fibromyalgia, or a > sleep disturbance. Right. > > So now I have no doctor who will treat me (my GP is going whichever way > the ID doc goes) and I have to wait for an appointment with some Lyme > doctor thousands of miles from my home. > > Suggestions for what to do until then so I don't lose the progress I > made taking the every-other-day minocycline would be appreciated. If > it's bordering on not legal, send me a private email! > > My son's ID doc and team hasn't made a final pronouncement about him, > but I think we know what we can expect. At least he is already seeing a > Lyme pediatrician in the States. > > - Kate D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 On Friday, June 10, 2005, at 03:24 PM, Schaafsma wrote: > I > was " naive " enough to be unprepared last Friday when authorizations > for PICC insertion, IV treatment and a nuclear brain scan were > reversed by a single individual who happens to the be a Medical > Director of my MediCal HMO. Oh no, how horrible. I am so sorry to hear that. I hope someone will convince him to reconsider. I can't imagine what he is thinking by taking that action. Surely he cannot have a conscience. - Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 This guy is supposed to be very good: Randy Baker. Santa Cruz. 831 476 1886. He's treating lyme in alternative ways but he gets it. I talked to him today about his use of bee venom (22 patients, about 12 lymies). He told me how he uses it. I'm going to tell my doc. I know Barb says it helped her years ago. He says it has been beneficial in everyone. Very good in pain. I tried to convince him to buy a mild portable chamber. He says he really would like to get one but his practice has many people on disability and he doesn't have the funds. > > Hi folks, > > > > Things are not going well here in Halifax, Nova Scotia as far as > Lyme > > treatment goes. I just got final word from the ID doc today that > she > > doesn't see enough evidence that I have Lyme disease and that in > any > > case, I have already had enough antibiotics to kill it off (even > though > > I never have had the high dose antibiotics Lyme docs recommend) > etc. > > etc. > > > > Well, I guess that happens to most Lymies when they see ID docs, > but I > > was naive enough to think that if I presented her with a notebook > full > > of studies and pointed out various inconsistencies like the CDC > > claiming that there's no evidence that Lyme bacteria persists when > > there is a bibliography of 67 such studies available on the > internet > > (plus more not on the list), she would see reason. But no, it is > > basically her studies versus my studies and hers win because she > is the > > doc. > > > > Also, she believes that my WB IgM is a false positive due to > > cross-reactions, even though I have Lyme-specific bands according > to > > the Lyme doctors. (Plus my son has even more such Lyme-specific > bands > > than I do.) The doc also believes that except at the very > beginning of > > the disease, the standard ELISA and Western Blots always show a > robust > > reaction if the person has Lyme. > > > > My myriad symptoms, according to her, indicate CFS, Fibromyalgia, > or a > > sleep disturbance. Right. > > > > So now I have no doctor who will treat me (my GP is going > whichever way > > the ID doc goes) and I have to wait for an appointment with some > Lyme > > doctor thousands of miles from my home. > > > > Suggestions for what to do until then so I don't lose the progress > I > > made taking the every-other-day minocycline would be appreciated. > If > > it's bordering on not legal, send me a private email! > > > > My son's ID doc and team hasn't made a final pronouncement about > him, > > but I think we know what we can expect. At least he is already > seeing a > > Lyme pediatrician in the States. > > > > - Kate D. Quote Link to comment Share on other sites More sharing options...
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