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Old Sat Aug 26, 2017, 03:39 PM
Joan C Joan C is offline
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Join Date: Aug 2017
Location: Placerville, California
Posts: 3
Hopeful,

I appreciate you sharing all the experiences you have had. It is helpful in trying to make sense of what I am experiencing.

Tapering of cyclosporine may very well be the cause. A member of my care team mentioned that some patients experience bone pain while on the medication but didn't relate it to the tapering. She suggested taking Claritin. She doesn't know why it works with some patients, but it has. I tried it, but I didn't notice any difference.

Currently my counts are: RBC: 2.36; WBC: 2.6; Hemoglobin: 9.0; Platelet: 94. I have been steady with these counts, fluctuating slightly, for over six months with no signs of dramatic dropping (or increasing) as a result of the tapering.

I see an alternative/functional health care provider as part of my healing team. He did a Tissue Mineral Analysis on me after my treatment which showed that I was very deficient in Magnesium (as you mentioned) and Calcium levels along with other low metabolic patterns, i.e., Iron stores (as you also mentioned). He is treating me with supplements that are proving to be most effective. I have had fewer muscle spasms in the last few weeks.

Also, I attribute my steady counts and quick recovery from the ATG treatment to the autoimmune, nutrient dense food protocol diet I have been on since my diagnosis. It really helps with fatigue, heart palpitations, swelling, and inflammation.

My Western Medical Team is with the UC Davis Cancer Center in Sacramento. As a teaching facility, they may have different, innovative ideas about treatment. My Oncologist is Dr. Brian A. Jonas, Assistant Professor in the division of Hematology and Oncology. So far, he's been straight forward with me. It has only been recently, since my PET scan, that he has sort of treated me like a mushroom. We plan to have a thorough discussion on September 6, 2017, to go over the new test results. Until then he says he's looking for answers with a team of other doctors and plans to refer me to an Orthopedic surgeon for another biopsy.

My hope is that my pain and the lesions on my spine, pelvic, and hips are due to bone marrow regeneration. That is why I put the question out there. I am looking in areas my doctors do not access, such as this forum, to find as much information as I can from the experiences of fellow patients so that I can be the best advocate for myself. The medical community, with their terminology that is sometimes hard to understand, leaves me confused as to what they are telling me and what they are not.

Thank you for your help, I am very grateful.

Best regards,

Joan
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Joan; diagnosed AA and PNH in October, 2016; treated with ATG in December, 2016; currently on cyclosporine.
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