(The roller-coaster ride continues as Christine meets up with a series of outside stressors that threaten to derail her progress as she heads back to Dr. Chia to figure out what to do next. Find more of Christine’s blogs here.)
It has taken me 2 months to get to writing this post…My apologies. I’ve been riding the ‘healthacoaster’ for the last 2 months….well, actually the last 20 years (but who’s counting?!).
My focus for my third appointment with Dr. Chia, the first week of May, was on autoimmunity, having been left with questions about it after my previous appointment in February.
The Autoimmune Question
Dr. Chia does not believe ME/CFS is an autoimmune disease. However, he is concerned about the danger that his patients on Equilibrant can cross over into autoimmunity. This is why calibration of the dose of Equilibrant under a clinician’s watchful eye is so critical (my comment, not his). Dr. Chia looks for signs of autoimmunity by checking for inflammation both clinically and through blood tests.
He explained that there is a gray area in the immune system between ME/CFS and autoimmunity. On the one side is ME/CFS, in which a Th1/Th2 imbalance exists in the immune system. On the other side is autoimmunity, in which the immune system attacks healthy cells. Too much Equilibrant will over-stimulate the immune system and tip it into autoimmunity, while too little will not correct the imbalance in the immune system. He added that there is also a genetic factor in autoimmunity.
When he went over my lab results, he said my rheumatoid factor had come down some from the last check three months prior, which was good in light of the concerns about autoimmunity. However my c-reactive protein (CRP), another indication of the strength of the inflammatory response, was high.
I had just finished a 7-day course of amoxicillin for an ear and throat infection. According to the lab report, taking carboxypenicillin can cause a falsely decreased c-reactive protein level. I am not sure if amoxicillin is in this category. If so, I’m thinking that would make my level even higher. I told Dr.C I had been taking the amoxicillin, but he did not seem to be alarmed. He is watching this closely and has ordered a test for this among other blood tests for my next appointment.
Dr. C said my high T-cell activity scores showed that they are “angry”, which means they are finding something to fight, and that my pain is also an indication of this. He said my T4 (T-helper cell) cell count, which I believe is the same as absolute CD4+ cells, is down from 2374 to 1539. Dr. C also clarified the antiviral properties of Equilibrant have been shown to block Coxackie B-3 and B-4 do not work on echoviruses. My first blood tests back in October indicated elevated levels of Coxsackie B1, B2, and B4.
For 3 1/2 weeks prior to my 3rd appointment with Dr. Chia, I had been taking 5 Equilibrant per day, having lowered my dose from 6 to 5 to 4 then back to 5 per his instructions at my February appointment, because of the autoimmunity concern. He had told me to regulate my dose according to my body’s responses at each dose amount. I seemed to have hit my optimum dose at 5. I had been doing very well with only 1/2 day crashes about once-a-week. He agreed that I was progressing well and told me to stay at 5. He again cautioned me about over-doing…difficult not to do when you’re feeling better!
Dr. Chia also said he didn’t want to add any other supplements or meds to my treatment at that point. I was relieved to hear that, not wanting to mess up my good run of doing so much better…but ready to do whatever he recommended.
He talked about the near future in drug development. He is encouraged by the hepatitis C drugs in the works, hoping one of them will prove to be effective for enteroviruses also. He said it would probably be two years before these are available. He is also encouraged by some other things going on in drug companies, but was very protective of any specific information.
He seemed discouraged by the lack of funds to move his research forward, though he and his son are continuing with it. It sounded like they will reach a point when other funding will be required before they can do more extensive research through patient trials. Though he chose not to participate in the FDA Stakeholder meeting, he believes the FDA holds the most hope. I failed to note what that hope was : ( I’m assuming, from today’s vantage point, that he was talking about recognition and research for ME/CFS.
Not long after my appointment, I experienced a 3-week crash (the worst in a long time) which culminated in a diverticulitis attack. Ugh! I was put on heavy-duty oral antibiotics by my primary physician. I also called Dr. Chia to inform him and to receive any advice he might give me.
His office got back to me in less than 24 hours. His instructions were that if my diverticulitis did not improve on the antibiotics, I was to reduce my Equilibrant dosage by one. Due to the crash, I had already lowered it by half. Fortunately, my diverticulitis improved! I figured the crash which had begun 2 weeks prior to the specific diverticulitis pain, was due to the infection brewing and my immune system reacting. I was encouraged by that thought and I began to feel much better.
Then, two to three days a week I got hit with pain and crashes again. I have been on the 4 1/2 dosage since I lowered it during the 3-week crash. Since much of my pain has been in my joints, I again have concerns about the autoimmune issue, and am grateful I have Dr. C’s expertise to guide me.
Stressors Pile Up
There have also been a series of stressful events and losses in my family in the last 2 weeks, including losing my medical insurance, which have, no doubt, contributed to my less-than-optimum health. My next appointment with Dr. Chia is in August. I am hoping to be insured by the time I need to get blood work done before I am due to see him, or that the lab costs will not be prohibitive.
My healthacoaster seemed to reach it highest point in the weeks before my May appointment. There have been climbs and plummets all along, but my health has not climbed to the top again. It has been a while since I had a really good day, but there have been good ones.
I am on this Equilibrant ride, with Dr. Chia as the ride operator, at least till I reach the 2-year mark which he said at the outset would be the duration. I figure, what have I got to lose? I’m no worse than when I first saw him in November and much better off in many ways! I am committed to seeing this through, screams and all!
Till next time….keep that seat belt fastened!
- Learn more about Dr. Chia here.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone