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Re: Defending Shoemaker with caveat
Posted by Tracy on 5/25/08
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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