Saturday, December 21, 2013

My Journey with Hepatitis C

I have been thinking about writing this blog for a long time.  I was finally spurred forward by a conversation, just yesterday, with some macrobiotic colleagues about the intersection of macrobiotics, Asian medicine and Western medicine.

I am Hepatitic C positive, or at least I was.  I probably got infected in the early 1980's.  I remember a very short period of time when I was so exhausted by even the slightest exertions that I could not make it to work, fell asleep on the subway and missed alot of classes I had been looking forward to taking in cranio-sacral therapy,  Around this time I started seeing an MD that practiced acupuncture.  I had a full panel of blood tests and he said nothing unusual showed up.  Years later I resourced those tests and saw mildly elevated liver enzymes.  While this should have set off some warning, there was, at this time, no test for Hep C.  In fact, if it did get diagnosed, it was called non A-non B.  This MD thought I had chronic fatigue syndrome since nothing showed up on the tests, common for CFS.  Within a few short months of acupuncture treatments, my fatigue totally went away and I felt really well. Note that Hep C produces severe flu like symptoms, including fatigue, but that these symptoms pass and life goes on.  We had thought that I was cured of CFS by acupuncture.

Also, in the early '80's, I found my way to macrobiotics, or at least my version of macrobiotics.  Ever since I was a teenager I had wanted to be  vegetarian.  The motivation for this was confounding since it was completely different from the dietary habits of anyone in my family.  I was motivated in part by animal rights and also by the severe health issues of almost my entire family.  Recently I connected with an aging 2nd cousin who could not believe that I do not have diabetes, since everyone in the family did!  I understood almost nothing about vegetarianism outside of reading a few books and so I became a "junk food lacto ovo vegetarian".  I slipped in and out of vegetarianism for years, partly because I had huge cravings, partly because I did not know how to cook and mostly because I did not understand the philosophy of right eating.
asssssssssssssssssssssssssssssswWhen I moved to NYC I was mostly lacto ovo vegetarian with occasional fish meals.  Wonderfully, NYC has always offered some fine macrobiotic and vegan dining options and I noticed that whenever I ate at the Cauldron or Souen or , there was another great one in the West Village, I felt balanced, clear and really energetic.  I searched for macrobiotic teachers and found both Joshua Rosenthal and then Denny Waxman.  I studied hard, learned how to cook and eventually taught cooking and built a counseling client base.

By the late 80's, I was seeing a great MD for regular check ups.  When my first tests with him showed abnormal liver enzyme levels he went on to  run the Hep C panel ( for now it had an official name and diagnosis) and I am very grateful that he had some initial experience with this diagnosis in the early days.  When the test came back positive I could not believe it.  I had been dealt a death sentence.  In these early days there was no viable treatment and the first specialist I saw pretty much had me giving up and thinking about transplants.  I was  feeling well, exercising, developed a spiritual practice and eating macrobiotically. I believed that I could cure Hep C naturally.  New York City has incredible resources.  In short order, I found a world renowned liver specialist and a gifted DOM.  The liver specialist took a wait and see attitude, as the treatment at that time was a toxic combination of Interferon and Ribavirin that was not terribly effective for my particular genus of Hep C. Since he developed the protocol, he should know.  The advice was to eat healthy, keep stress levels low and wait for a new treatment.  As an aside, the new treatments were not right around the corner, but over 20 years away.  I also found Dr. Nigel Dawes, DOM, who was practicing with Japanese herbs.  He put me on Honso 09, or sho saiko to.  Years later I found out that Memorial Sloan Kettering was experimenting with sho saiko to for liver disease.  I stayed on sho saiko to for 15 years, I think.

As I was moving to New Mexico, I had my NYC liver specialist perform a biopsy.  Actually I was talked in to it, because I was curious.  He was insistent on having the biopsy, as many people were now suffering serious consequences and dying of Hep C  He felt it important to "stage" me and offer the toxic treatment if called for.  My liver enzymes were now normal, which I attributed to macrobiotics and sho saiko to, but I had the elevated viral load.  The specialist was amazed that the biopsy showed  absolutely no cirrhosis or other ill affects of Hep C.

Yearly blood tests showed an increasing viral load.  I knew this was a deadly disease, but now I also knew that macrobiotics and sho saiko to were just part of the picture.  There was still no treatment that I was willing to risk,  The latest, a combination of ribavirin, interferon and another drug has raised the cure rated dramatically, but with 48 weeks of treatment it was still making patients really sick.  Sadly, I have no kind words to say about the liver specialist in Santa Fe who essentially yelled at me and tried to force me take the new treatment.

Miraculously, I found my way to SouthWest Cares, a  speciality clinic for HIV that was moving in to HCV treatment.  Because of the respect that clinic director Dr. Trevor Hawkins has in the medical world, his clinic is able to be a center for advanced clinical trials.  Dr. Hawkins will not do trials that he does not believe will have benefits for the clients of the Center.  I had been reading about a particularly interesting set of trials from Gilead pharmaceuticals, combining Sofosbuvir and another drug in a non-interferon, non-ribavirin protocol of 12 weeks.  SouthWest Cares was a part of these trials.  I went thru extensive tests and although my viral load was increasing, I still was in good shape in all other respects.  Interestingly, sho saiko to was specifically mentioned in the protocols as on the prohibited list.  For me this was a clue that it was very effective, but ulitmately could not rid the body of the virus.

I believe that I had kept the highest level of health possible, in the face of 30 years of Hep C, because of macrobiotics, meditation and sho saiko to.  This combination kept me in the best physical and mental condition where I could be accepted into the Gilead trial.  Several weeks ago, I received my 12 week post treatment results.  The virus is undetectable in my body, as it has been since week 2 of the trial.  The results are called a "cure", with extremely minimal chance of return.  The combination I took should be on the market in 2015.

I owe my current state of health, free from the Hep C virus, to macrobiotics, Asian medicine and Western medicine.