Re: Defending Shoemaker with caveat
Posted by Jill on 6/09/08
On 5/25/08, Tracy wrote: > Yes Katie, I too was suprised at that (in his packet). I am doing much better, needed to have a > doctor look very closely at what was going on, and to not give up until s/he did. That is > something RS wouldn't/couldn't do, unfortunately. > He did provide some info for the other docs and for me (did some thorough testing), and also I am > still using the VCS test to measure my toxin level. In the end I am greatful to the many docs who > offered pieces of the puzzle. I could've given up a million times, but I kept pushing and 'doc > hopping'. I can finally rest- at a cellular level, my current doc and I understand what is going > on. Because it took so long to find out, my treatment is taking a while, we are addressing layer > after layer of issues. > I am glad your mother got better with the help of Dr. Burrascano. I am actually being helped > immensely by someone he trained who worked with him. What a great man, well, both of them. > Thanks for the feedback- hope you are well. > > > On 5/21/08, Katie wrote: >> Tracy, >> I think I would listen to the doctor who will TREAT chronic Lyme. My mom had chronic Lyme and is >> fine after 2 years of antibiotics. The post lyme syndrome is an excuse not to treat long term. >> post lyme syndrome a way out for doctors not to deal with the illness much the way a CFS >> diagnosis is given. >> I don't believe in Post Lyme Syndrome as my Mother's doctor told her "saying post lyme syndrome >> is no more true than post alzheimers. Either you got an active Lyme infection or you don't. >> My mother was a patient of Dr. Burrascano. >> I would only keep a doctor who will make you comfortable. You need to not only get first class >> care but have a trust and respectful relationship with the doctor too. >> >> I understand about that packet. I called his office for one out just in case my mother didn't >> get well. We were both surprised at the level of immaturity written by a doctor in his patient >> package. I am in high school and even I know better than to send this trash to patients if you >> expoect to run a good business. I could not believe the complaints about the millionaire who >> didn't pay, the housewife and all these examples of him being not paid by patients. If he is >> that paranoid about not getting payment from his patients he could tell patients to prepay with >> a check two weeks in advance or a credit card. >> What a strange guy! >> >> >> >> >> On 12/23/07, Tracy wrote: >>> Hi! When I posted last year (see above), I had only read about the doctor and read some of >> his >>> work. Sorry, seems that I might've misled a few readers). I wrote about my philosophy and >>> about risk taking and in general, doctors going against the grain, theory driven treatment, >>> etc. I was (and still am) impressed with the writing and the work that RS does (with a caveat >>> regarding attitude). It is a warning, as there is so much political angst tied up in research >>> on chronic illness, and it is coming out in many ways (we see it in our own discussion here). >>> >>> I recently went to him, and am starting the protocol. Not sure how though (more below). I >>> totally understand folks responding to doctor and staff's odd or negative attitudes. I felt >>> comfortable during the visit, but after that had two phone sessions where I perceived a lot of >>> hostility on his end. In between, he sent me this fax that was incredibly insensitive. I >>> believe that it was in response to my telling him that I had a standing appointment to see a >>> (specific) Lyme doctor. During the second phone call he questioned why I was seeing him (Lyme >>> specialist). Reading in between the lines, two months later, I realize they simply dislike >>> each other. That might be putting it mildly. I was/am caught in the middle. I didn't know >> it >>> then though. It was so difficult and upsetting to read his fax, which was accompanied by a >>> test result (C4a) that was so out of whack. The fax reads "You are making very poor decisions >>> in regards to the evaluation of your health. You should've gotten an MR Spectroscopy. You >> need >>> to look more closely at the mechanism of your illness". And that was it. He and I had never >>> talked about an MR Spectroscopy. Someone from his office had called me while I was on my way >>> to see if I wanted it, and I said that I didn't know, that she should try to schedule it for >>> me. She ended up saying I'd have to stay in MD for another few days, which I couldn't do. So >>> I figured he and I would talk about it, but it never came up. >>> >>> After getting the fax, I called over to one of his staff, and was informed that she couldn't >>> tell me specifically what the message was referring to. She said he wanted to 'prepare me for >>> the next phone consult'. I spent all my waking hours trying to figure out what C4a >>> specifically meant, and was so confused. Lyme or no Lyme??? It was a very difficult thing to >>> go through. I'm still not 100&37; sure why according to him I am not making good decisions in >>> regards to my health (I have stopped at NOTHING to gain new information, to take a thorough >>> approach, to honestly look at all results, take into account all doctos, all research, etc. I >>> have kept all my records, etc. Been like the model patient). So to read that, I was VERY >>> surprised. And I took it personally. As I did the attacks on Shoemaker and his research, >> from >>> this Lyme doctor after I went. I have to say that I feel very isolated due to BOTH of these >>> doctors' lack of sensitivity. It has left me unsure of which protocol to follow. I cannot >>> seem to fit them both in, I would have to modify one. One seems to believe in Chronic Lyme, >>> the other in Post Lyme Syndrome. >>> >>> So I find myself caught up in this mix, and am trying to separate personality, defensiveness, >>> etc. from science. But I am not a doctor. I am a Licensed Psychotherapist and I cannot >> figure >>> this out. If you read the introduction section of the packet Dr. Shoe sends, it sounds like >>> words from a war veteran- you can tell he has been burned before and has scars to prove it. >>> >>> I'm not sure what I'm getting at here, just that I want to recognize folks' experience of the >>> backlash of this- the result of possibly burned out staff, the doctor so used to defending >>> himself that it is projected onto patients, etc. I am not excusing it, but perhaps validating >>> some people's experience here. And I guess I'm also wanting to ask if anyone here has tried a >>> modified protocol (CSM 2x/day as opposed to 4, along with antibiotics at the same time). >>> >>> Both doctors seem very concerned about the status of my health (Dr.Shoemaker said I should be >>> existing in a bubble, the other doc said if I continue to go without aggressive Lyme >> treatment, >>> I will have a worse spect scan / brain damage). I honestly don't want to ever talk to either >>> one again. What a position to be in. >>> >>> There's one more thing I want to add, an ODD thing, and that surrounds the Mycometrics. Has >>> anyone done this (ERMI) testing? >>> Thanks in advance to your response- >>> Tracy >>>
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