(Christine sees Dr. Chia for the second time bearing some good news. Vicodin use is down and her activity level is up from 3-6 (on a scale of 10) but increasing Equilibriant resulted in more fatigue. Dr. Chia recommends tweaking Equilibriant and gives her a big warning about overdoing it. So far the tweaks are working but Christine a 20 year patient, realizes she’s in this for the long run and she will be patient. )
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M.E. and Dr. Chia, My 2nd Appointment
I was anxious to see Dr. Chia for my second appointment to learn if he thought I was making progress on the Equilibrant during my ﬁrst three months of treatment. I thought I had…until the last couple of weeks when fatigue had been rendering me nearly motionless. I went armed with the graph/chart I had put together in preparation for the appointment. I hoped it would give him a fairly clear picture of how the Equilibrant was effecting me. On the graph I noted my Equilibrant dosage each day, my half day and full day crashes, and when I had taken pain medication. My internist prescribes Vicodin at a maximum of 2 per day. In the last 45 days, I had taken less than 1/2 my monthly allotment. I also came with my list of questions.
The Nitty Gritty
The great news is that he said it was evident that I am responding to the Equilibrant! Since my pain had decreased, but my fatigue had increased after titrating the dose from 5 to 5 1/2 then to 6, he recommended I lower my dose back to 5 for a week to 2 weeks. If I do well on 5, I am to move down to 4. If worse on 4, I am to go back to 5. It’s a good thing I keep daily records! He mentioned that he has other medications to try, which I’m assuming are additional antivirals, but he wants me to ﬁnd my optimum dose of Equilibrant before adding anything else.
Dr. Chia told us about his “serendipity discovery” of replication of enteroviruses. He put 4,000 virus in a Petrie dish and 48 hours later there were 500 million! How weird to think that is going on in my body! No wonder I feel so rotten! He said that it’s easier for “the viruses to go up than for the Equilibrant to tamp them down”. Then he gave me a big warning. “Don’t overdo!” He told us about a patient, a former stunt man, who responded well to Equilibrant and began feeling much better. So he ramped up his activities, but too soon, before the treatment was completed. He relapsed and never recovered! Apparently he wasn’t the only patient who had done this. That put a scare in me! I have always had difﬁculty pacing. When I feel good, I overdo. So now I’m trying to ﬁgure out how much is too much…on a good day.
I asked him if I had understood correctly that Equilibrant is not only an immune modulator, but also has antiviral properties. He said that it does. I asked if the speciﬁc pain I had been experiencing in my kidneys and neck indicate that the medicine is working on speciﬁc areas of multiplied virus. He conﬁrmed that it is. He explained that fatigue indicates interferon is at work in my body, but it cannot kill Coxsackie B3 & B4. The more virus, the more fatigue. He said pain is my body (I assume my entire immune system) ﬁghting back. I’m going to ask him for further explanation of this next time.
I also asked Dr. Chia about low dose naltrexone. He had given me a prescription for it last time for sleep, saying that it may work better than the zolpidem (Ambien) and trazodone I’m currently taking. Since it blocks opioids, I couldn’t take Vicodin with it. I opted not to take it. But after reading about naltrexone and it’s possible help for ME/CFS, I asked him if I should take it and eliminate the Vicodin. He said no, I shouldn’t.
My encouragement through the last three months, when I’ve had rough days, has been knowing that those hard days are actually accomplishing something rather than pain with no gain. My partial or whole day crashes are different on the Equilibrant than my normal ones. It’s hard to explain, but they feel different physically, which I have also found hopeful.
After reducing my dose of Equilibrant back to ﬁve, pain returned, along with fatigue with off-and-on crashes for about 10 days. There were several nasty viruses hitting people around me. I’m thinking that perhaps my down-turn was due to exposure to these. Though I wasn’t symptomatic for those virus, my immune system may have responded to them. Dr. Chia conﬁrmed that PWME don’t tend to get current viruses, but that doesn’t mean our bodies don’t react to them. I ﬁnd that encouraging in a weird way….since it’s most likely not all about my current treatment. In the last 2 weeks I have had only 2 half-day crashes. Today I lowered my dose to 4 Equilibrant. I’m hoping my improvements hold, but I realize the trial-and-error is necessary to discover my optimum dose.
I am in this for the long haul…determined to see this course of treatment through, while not complicating it with additional treatments unless Dr. C recommends them. I believe I have everything to gain and nothing to lose, because without it I will still have rough days, weeks, and months…but without the hope that they will be accomplishing something medically. So, I’m pressing on! My next appointment is the beginning of May. I’ll be writing an update at that time.
Thanks for reading! Rest well. Christine
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- Oxymatrine (Equilibriant) and Chronic Fatigue Syndrome