Could this REALLY be happening?
One of the hallmarks of ME/CFS I have discovered over the last 20+ years living with this illness, as well as the year I have finally been under treatment by an expert is its sometimes amazing unpredictability. After time, it seems almost impossible to be disappointed when a new symptom appears, an old symptom exacerbates, a continued treatment begins to fail, or a new treatment makes me worse, because predictions cease and expectations are low. So, when an unexpected positive outcome happens, unexpected delight takes me by cautious surprise, i.e., “Could this REALLY be happening?!”
When I saw Dr. Chia for the first time in November, 2012, I went with guarded expectations…telling myself that even if he couldn’t help me, I would be thrilled to have a doctor who “gets it”! My 14 months of treatment with him continues to encourage me with unexpected outcomes.
When I was headed to my November appointment last Fall, it was with a discouraged heart because not only had the Inosine failed, but the Vicodin I have been taking for several years that usually at the least takes the edge off my pain, was no longer being effective. I approached the appointment therefore, armed with the question, “Do you see any hope for improvement at this point?”
As the appointment unfolded, I found that I didn’t need to ask that question.
Inosine and Cymbalta
The first thing we addressed was the Inosine he had prescribed at my last appointment in August. I gave him a synopsis of my journey with the Inosine, having adjusted it up and down per his instructions, but then stopping it after two months due to experiencing intense pain and finding no relief by decreasing it from 2 to 1 per day. I had also adjusted my Equilibrant dosage from 4 to 3 per day. I was relieved to hear him say I did the right thing getting off of it.
Because of increased pain and little to no help from the Vicodin, I asked him if I should go back to other medications that helped, for a time, in the past. He didn’t recommend that I go off the Vicodin. He suggested I discuss this with my primary when I see him. As I thought about it, the medications I had taken in the past, i.e. Cymbalta and Lyrica (not taken congruently), were replaced by Nortriptylene a few years ago. I take it along with the Vicodin since they are different types of medications.
My primary had delayed making a change from Nortriptylene to Cymbalta or Lyrica (for my neuropathic pain) at my last appointment with him until I obtained medical insurance again. I have also recently learned there is now a generic version of Cymbalta. I’ll be talking about this with my primary soon.
My blood tests for Dr. Chia showed that my inflammation level had stabilized: my C-Reactive level barely out-of-range and my Rheumatoid Factor, though still high at 36, had been gradually getting lower than my initial blood tests. These were the only blood tests he ordered for the visit.
He instructed me to begin Epivir, the first antiviral that he gave to his son when he became ill. When I asked still “gun shy” from the Inosine about the side effects, he said that it has the least side-effects of any antivirals, and that only about 5% of his patients experience nausea, headaches, and dizziness. He explained that the purpose of taking the Epivir is to try to terminate the viral chain.
He said that he uses Epivir only in conjunction with an immune booster and that it would be a 1 to 2 month treatment. I was to take 1 Epivir per day. If I did better, I was to increase it to 2 per day. After two weeks on Epivir, I was to increase my Equilibrant dose from 3 to 4. He also told me to have blood work done after about a month.
I delayed beginning the Epivir due to finishing a round of amoxicillin for a throat and ear infection, then being slammed with intense pain and fatigue. I was then headed into Thanksgiving Day week, and expecting to be possibly slammed by the Epivir, despite the statistics of Dr. C’s patients.
I remembered my friend, who is also a patient of Dr. Chia’s, had talked about Epivir on his blog, so I re-read his post about it. I discovered that when he began it, he landed in the ER…on New Year’s Eve, no less! So, I delayed beginning it until after Thanksgiving. I also found myself needing prayer from friends for courage to begin what I believed would be a very rough go. Fortunately, I was able to enjoy Thanksgiving Day with my family!
When I got the prescription for Epivir filled, I filled it for only 15 pills, not being sure how I would respond, as well as to help cash flow since the cost, without insurance, was $95 for 15 pills! To my delight, when I began Epivir the first week of December, though I was hit with pain about an hour after taking it, the pain decreased by evening and I had no ill effects after that. I increased my dose the next week to 2 per day. (Fortunately, my husband’s commission-only business has managed to keep the pills coming!).
A week after that I increased my Equilibrant from 3 to 3½, concerned about increasing it too quickly just before Christmas. I continued to feel amazingly well through December, despite getting a bad cold. I was so thankful to be well enough to prepare for and enjoy Christmas Day at my daughter’s with my family! The day after Christmas I increased Equilibrant to four per day.
Then, the New Year’s crash hit, beginning four days after Christmas! A week later, I lowered my Equilibrant back to 31/2, then back down to 3, hoping to find some improvement. I didn’t, so I made a call to Dr. Chia. To my shock, he told me to add Inosine…1 per day then 2 after a week. Needless to say, the thought of this was daunting. But I reminded myself that I am committed to press on in the treatment
Dr. Chia prescribes me. He is the expert, after all!
Another delightful unexpected, even shocking, surprise! I immediately improved! NOT trial and error…but trial and success! It was an incredible confirmation that just the right combination of treatments is worth all the ups and downs to discover!
Despite fighting another cold/cough in January, and my parents requiring more and more help from me, I have done very well! I’ve returned to my “normal” amount of pain, but the Vicodin is helping again! I have also been forcing myself to take 30 minute rests with no tv, no reading, no music, in a dark room, every afternoon whether I feel like I need it or not. (Something you would think after 20 years I would have already been doing!)
I delayed the blood tests (CBC and metabolic panel) Dr. Chia ordered, as well as my next appointment, since my medical insurance didn’t begin until February 1st. I don’t know yet what the tests have now shown him and whether or not he will keep me on the Epivir and Inosine. I am expecting a return call from him this week.
Enteroviruses, Lipkin, Stem Cells and New Drugs
Now, to some interesting information Dr. Chia shared at my November appointment:
He talked about the IACFS/ME meeting in San Francisco in March, where he will be showing his poster of his 2007 study showing enteroviruses as the cause of ME/CFS. I admire and appreciate his tenacity. At the meetings in 2007 and 2011, no one stopped to check out his poster! He is concerned that attendees may only be interested in what they already understand about this illness. He always seems sad about the reception of his research because he is absolutely convinced the viral cause (along with genetic and stress factors) of ME/CFS is enterovirus.
He commented on the stem cell infusion research in Panama that revealed that stem cells do not help ME/CFS
While praising Dr. Ian Lipkin and his work, he suggested that a study using whole blood, not just plasma, would have been more conclusive. Dr. Chia had shown this in 2005 when a study he did found enterovirus in 60% of white blood cells versus only 10% in plasma.
He has talked in the past about a possible Hep C drug which, he said, is the only one that works for RNA viruses. It is currently $20,000 per month. He has four patients that have the funds and the willingness to try it. Dr. Chia hopes to have a clinical trial in a year if three of these four patients respond well.
In his hunt for enteroviruses in body tissues, he has found them in fallopian tubes and in testicular tubes (of cadavers, I think he said). He believes this may have something to do with autism and its link to ME/CFS. Very interesting!
I realized toward the end of my appointment with Dr. Chia that the question I had come armed with, regarding hope for my improvement, was unnecessary. With a new treatment for me and other new treatments on the horizon, he clearly has not given up hope for my improvement…so why should I? After all…outcomes are not always disappointing. Sometimes they are delightfully positive.
So I press on…not doing perfectly, but better…to my next appointment in March.