Aplastic Archived Forum
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Re: Wholistic healing
Time: 9:21:54 AM
Remote Name: 18.104.22.168
I know how overwhelming all this is. I rember when my husband John was hit AA and the all the things we were trying to sort out. It does not surprise me that the dr’s have not heard of any cures for AA via natural medicine. First it’s not a common disease, second, most dr’s have never seen anyone with AA and third, no one keeps statistics for natural cures or spontaneous healing. Marla was and is very courageous to have challenged the system. It’s not easy. There is no Dr. who will recommend a natural approach because that is not how they are trained and it’s too for them risky….law suites etc. Their liscences could be in jeopardy.
We tried some alternative therapies before he did his treatment. John did High Dose Cytoxan without a BMT at Johns Hopkins in June of 02. He’s still in recovery. When I look back, and I try not to second guess our decision, I think I would have pushed getting the treatment as far out as possible to give the alternative treatments more of chance. We gave alternative treatment only about two months and that is just not long enough. I was not successful in finding any alternative dr with experience treating AA. So my confidence level was slipping. I just did not know how low we could let Johns count drop before doing the cytoxan. Success rates are not as good for super severe AA. John was still in the severe category. Also, you need to know that prior to all this, our lifestyle was pretty good. We had already cleaned up our diet and stuff back in 97 when I was hit hard from the flu and had ongoing joint problems as a result. So we went organic, stopped all bad fats, addes supplements, did do some detoxing, checked for food allergies etc. So here we were thinking we were doing pretty good and this hit John. He was never sick, never had antiboitics, exercised every day etc….I didn’t know what else we could change in our lives to eliminate what put John over the edge.
So, knowing that high dose cytoxan is risky, as is ATG and BMT, we went forward with the treatment. I had a plan to include alternative approaches to support him during this process. Very well intended, difficult to execute. He is working with Dr of Chinese medicince and a nutritionist now. It’s difficult to include all the traditional and alternative healing into his schedule.
I knew of one person who tried to turn her AA around with an alternative approach. She was still in a moderate state of the disease at the time. She was not successful and decided to do the High Dose Cytoxan cuz her counts kept dropping. She did very well with it and recovered much quicker than my husband.
This is getting lengthy so if you would like to email me or talk via the phone, that would be fine. My email is firstname.lastname@example.org and I could give you my phone number then. John would also be more than happy to tell you his experience.
One last point. One thing to take into consideration on the success of treatment for AA. It can be difficult to make an accurate diagnosis on AA. Some people for who the treatment does not work may be due to the fact that they were mis-diagnosed and were treated for AA when they did not have it. John’s first BMB was incomplete. The second was done at Hopkins and was very conclusive. They also look for and do additional testing on the bone marrow in their lab that which supported the diagnosis.