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AA Aplastic anemia

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Old Thu Jul 7, 2011, 02:55 PM
Lbrown Lbrown is offline
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update

I saw the hematologist yesterday. We talked about my meeting with the transplant team. They told me I wasn't sick enough for a transplant and I didn't want one anyway.

Although the transplant doctor recommended more / newer immune suppressants, this doctor wasn't so sure they would work anyway. I have already tried 3 different treatments and apparently they know this is all being caused by my immune system, yet immune suppression hasn't worked.

I told him the treatment I was doing next was the Marshall Protocol. I explained it to him briefly and he was fine with it, joked about not having to do anything for awhile. I was relieved.

My last WBC was 0.6, but he explained that the WBC from blood is not always a good indicator of how many you are producing. He said the main thing is if you have infections or not, and I don't. I even cut my finger and it healed no problem.

I am relieved because being on those meds makes me feel sick and does little to nothing for my counts. Although I have been on immune suppressants which would interfere with the Marshall Protocol, I do notice some improvements this year. I have not had an infected molar for the first time in about 7 or 8 years, and my lungs are really clear in spite of allergy season.

Deb
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Old Thu Jul 7, 2011, 10:41 PM
Neil Cuadra Neil Cuadra is offline
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Deb,

Do you keep a journal or spreadsheets or other records to track your progress and your treatment?

When you've been in this battle for years you can't keep it all in your head, and each new doctor you go to wants to know your history.
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Old Fri Jul 8, 2011, 01:32 PM
Lbrown Lbrown is offline
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Hi Neil,

Oh yes, I use Blogger.com.

A big part of the Marshall Protocol treatment is immunopathology, where dying bacteria cause a temporary increase in symptoms. I report my symptoms weekly to my doctor, so I've been keeping track since 2009 of all my meds as well as test results. With the MP, if the symptoms get too intense, you can adjust your meds, so it's important to keep track of what meds you were taking, what your symptoms were, and what helped you feel better. The name of the game is to go slow enough so you can handle the symptoms.

This practice also really helped me when I had ATG, because if I had a sudden heartrate spike for example, or hives, I would recognize it right away and then take whatever meds helped. Interestingly, having a cup of coffee would bring my heartrate right down to about 60 in 10 mins or so. I knew from being on the MP that the chlorogenic acid in coffee was an immune modulator, but I never really believed it worked until I tried it myself.

I also have notes of all my doctors appointments.

I think it is important to keep track of stuff. Do other people do this?

Deb
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