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Re: Dr. James Baraniuk
Posted by Katie on 5/21/08
Victim,
Thank God you found a good Lyme doctor. You can beat this illness. My Mom did after being sick for 6
years.
Katie
On 5/03/08, Another CFS/CBT victim wrote:
> I know exactly what you have been through. I saw Dr. Baranuik at Georgetown university hospital. He
> didn't order many tests. His suggestions was to take anti depressant drugs and get CBT counseling.
> After that I found a doctor who knows the many causes of fatigue and pain. I had many blood tests
> done and was checked for parasites too. I found out by blood test and stool tests that I have Lyme
> diease shown in a western blot test, and other blood tests found Babesia, high platimun and mercury,
> mycoplasmas and fungus. Antidepressants and CBT can't do much for Lyme , fungus or toxins, maybe
> make it worse. I have nothing against CBT if they physical problems are treated too. But they were
> not at Georgetown.
> We need to get the word out that the eliza test for lyme disease is a misleading test. the western
> blot is more accurate.
> I am on a treatment plan now that does not include antidepressants or cbt and I hope to be well
> again.I am beginning to make plans for my future something I have not thought about in a long while.
> My advice to anyone who is sick with joint pain and fatigue is to find a doctor who will listen and
> take a lot of blood tests and ask a lot of questions about chemical exposures, viruses and if you
> have had bug bites.
>
>
>
> On 4/06/08, me2 wrote:
>> I am in agreement with you. BTDT.
>>
>> It's all about the grant money and getting published .
>> Dr. Shoemaker is not like Dr. Baranuik, Shoemarker is far more advanced in thinking outside the
>> box.
>> Now I am getting well. Almost there!
>>
>>
>> On 12/27/07, Melody wrote:
>>> Dear Tracy,
>>> I read Dr. Shoemaker's book, "Desperation Medicine", it really was good.
>>> I would like to see him but from what I am reading it does sound like he can be an as-h--e
>>> sometimes, but he has got to be better than what I got at Georgetown University, from the
>>> experts in CFS there.I understand what Dr. Shoemaker means by doctors working for institutions
>>> and get Pharmacy company grants. They diagnose based on medical politics instead of finding out
>>> what is making us sick. I was diagnosed with CFS and was given Cymbalta and Feleril and told
>>> that was it.I have been taking this but I keep feeling more ill with each day that goes by. I
>>> know my hormones are not working well, I feel like I have the flu and stiff joints and think
>>> maybe I have Lyme's disease, I live out in Loudon County. At Georgetown Immunology they don't
>>> check for much and since my hormones where in normal limits but on the low end of normal limits
>>> the doctor won't do anything. I know my hormones are bugged out because my skin and hair are dry
>>> and I can only sleep at certain high points in my menstrual cycle. I need a doctor to get to the
>>> cause of my illness and sooner rather than later if it can be done. Does anyone know if Dr.
>>> Shoemaker diagnoses hypothyroidism if you are on the low end of the lab range?My last TSH test
>>> was 4.1, but this is considered normal at Georgetown.
>>> Does anyone know if Dr. Shoemaker treats low progesterone or estrogen with bio-identical
>>> hormones?I don't remember reading anything about sex hormones in his book but my mind is foggy
>>> too. If Dr. Shoemaker doesn't loose his temper and will be nice, I would consider going to him.
>>> I need a good doctor. I will not sit still and have CFS stamped on my forehead without
>>> explanation.In his book and on his website you can see all the tests Dr. Shoemaker orders. I had
>>> less than half these tests at Georgetown. I may be sick but not brain dead, I know when doctors
>>> are trying to solve problems instead of just making a name for themselves to get published or
>>> another grant.
>>> Melody
>>> Melody
>>> 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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