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Old Mon Jun 18, 2018, 11:48 AM
Val.B Val.B is offline
Join Date: Jan 2017
Location: Montana
Posts: 3
Alternative treatment isn't for everyone...

My research initially focused only on SAA and VSAA. The statistics were very scary and I was looking mostly at immunosuppressive therapy at that time. I just couldn't get past the side effects! I wasn't willing to give up the life I love (specifically teaching) at that time. (I'm still not. I'm single and responsible for all my bills. I also can't afford not to work!) Once I started looking at MAA as a subcategory, things changed. Sadly, there is very little information on MAA. (It is a rare subcategory of a rare disease!) One of the studies I found said that without treatment 1/3 of people with MAA would get better, 1/3 would stay the same, and 1/3 would get worse. This statistic prompted me to "play around" with my treatment plan a little more than I probably would have if I were diagnosed with a more severe condition. (I figured I had a 2/3 chance of staying the same or getting better.) I also knew that supportive care has improved greatly and I could stay alive long enough to switch paths, if needed.

Before I started LDN, I came to this site looking for information. I found only a couple mentions, one that stated that it helped energy. It surely helped mine! I feel better than I've felt in years...and keep feeling better! That alone has been worthwhile to me. (The fact I think it's helping me get better makes it a miracle drug, in my mind!) A doctor at Mayo Clinic told me there wouldn't be an interaction if I had started cyclosporine. Not sure that makes sense, since they work opposite each other, but I loved the idea of staying on my "energy pill" should it ever come to that!

One of my biggest battles with my disease has been trying to find a truly integrative (western medicine + alternative medicine - equal value given to both) approach. Although Mayo Clinic has a "Complementary and Integrative" Medicine branch, it is truly more "complementary" (western medicine first, with alternative medicine to support it) than "integrative" at this time. I'd love to live in a medical world where I can have a round table of health care professionals that includes my general practitioner, hematologist, naturopath, acupuncturist, nutritional/dietary specialist, mental healthcare professional, and other holistic healers all around the table approaching my disease from different viewpoints and I get to pick what approach I want to use (or they all work together to create a personalized plan for me.) I have heard that Cancer Centers of America does something along these lines. A dream situation, in my opinion!

My journey isn't over, but I'm seeing a light at the end of the tunnel! I've accepted the fact I may never have "normal" blood counts. My hope is I can still live a relatively "normal" life despite that.
Val, 45. Diagnosed with MAA in March 2017. Considered to be autoimmune due to a small PNH clone. Alternative treatment is working!!!
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