Ali

I came across your site link on the AA/MDS ListServe and through regular emails with Marla Brown. I was not familiar with the method that you have chosen as an alternative approach, so enjoyed learning something new. First, let me say that I do not have AA or MDS. I have another wonderful little number classified as Large Granular Lymphocytic Leukemia, fondly referred to as "LGL." I am a physical therapist who works full time, 44, female, married without children, living in Cincinnati, Ohio. I began my journey, however, with an emergency hospital stay for what they thought was AML. I had been followed since '92 for low WBCs. I was not too consistent in following with my hem/onc as I was feeling quite well. After a 3-month period of time during which I felt I was overworked and fatigued, on 10/15/99 my husband dragged me to the doc with a 3.4 hgb and I was hospitalized.

After receiving 6 units of PRBCs, I went home late the next day only after I promised to return in another day to begin that familiar routine of CBC/Ds and transfusions. My first 2nd opinion told me that I might have AA (that's how we found the AA/MDS ListServe) and strongly recommended treatment with ATG/CSA but suggested that I consult with one of his partners first. His partner felt that it was MDS and I began being HLA typed along with my siblings. We found a great match and I actually was very positive about the pending BMT. But we took a detour via MD Anderson 12/99 to talk with someone with more experience with either of these diseases (mine of course did not have a normal or definite presentation). There I was told it was not AA or MDS but that I could maybe tease out what it was by trying ATG. We had no sooner returned from Texas before MD Anderson called. It appeared that one of their pathologists who saw my BMB/A reviewed at their weekly roundtables wanted some more blood and was wanting to investigate the possibility of LGL leukemia. We immediately sent blood and located a guru on LGL at Moffitt Center who agreed to see me. In the meantime, we sent blood out to a lab in Washington state that Moffitt used for confirmation of the LGL. It was confirmed at a visit at Moffitt 4/00. I was informed that ATG might have had very negative consequences for me had I pursued it.

There are not many known cases of LGL (1 in 10 million worldwide) out there but it is a clonal abnormality involving a gene rearrangement on the T-cell that is confirmed via flow cytometry and a specific gene rearrangement study. It is usually heralded by neutropenia and often accompanied by RA. I, of course had the additional complication of anemia. I went on an 11 month protocol using low dose oral cytoxan daily @ 100 mg. It worked after about 2 months. My WBCs dropped even lower on this chemo drug. The last several months my counts began a slow downward trend. I began emailing with Marla on alternative approaches. If what I was doing didn't work, I was told I would just do it again. Not a pleasant thought. I began to be concerned about my liver, kidneys, etc since my docs weren't the least bit concerned about possible side effects down the road. My last transfusion was 5/26/00, I completed the cytoxan 4/13/01.

Starting in 3/01, my husband and I became vegetarians. Most recently I am following a similar approach as Marla, using BarleyGreen concentrated green food source and fresh carrot juice daily. We eat very little cooked food trying to boost the nutrients at the cellular level with a rawfood diet. Marla's courage to try this natural approach was contagious. My husband has joined me in this endeavor. My platelets have not been affected throughout my ordeal. I believe that my illness was from environmental sources, what I ate, how I lived, vaccinations, household cleaners.

Through the AA/MDS ListServe, I encountered 2-3 others with a similar condition to mine. Very few people, however, are choosing an alternative path. Marla suggested I contact you. I am interested in following your experiences. I have been feeling great since changing my diet and my counts appear to like it. I kick myself for not trying this before the chemo, but at the time my concern was to avoid transfusions which might affect my odds if I needed a BMT. My WBCs have moved from 1.2 to 2.2. This was the level of my WBCs in '92. I am now hoping to change this despite my docs thinking otherwise (in their words, be happy with what you got). When I saw my hem at Moffitt 4/01 he told me that he had been hoping for transfusion independence as the best outcome, that molecular remission was not the usual occurrence. However, my latest tests seem to indicate molecular remission. I am crediting a lifestyle change for this occurrence.

Everything that I found out about the immune system from medical sources seemed to indicate that when you had a disease of the immune system, you couldn't just strengthen the immune system as it might have dire consequences. But I felt that what I needed to do was strengthen my immune system, and Marla was the only one I knew who also sensed this. Just wanted to let you know that there are many of us out there with positive alternative experiences. The choices I make have been largely affected by the folks at Hallelujah Acres (www.hacres.com), Dr. Day's testimony (www.drday.com), Marla and the Gerson Clinic. Diet and lifestyle changes are the primary recommendations. We have been cleaning up our home and steam distill all our drinking water. Will keep you in thoughts and prayers on your journey,