(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.)
May 2013
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.
Balancing Act
Dr. Chia believes manipulating the immune system in ME/CFS can be a balancing act; activating it to much could lead to autoimmunity; not activating it enough could allow pathogens to flourish.
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.
Test results suggested Christine’s T-cells were actively fighting off an infection
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
The roller-coaster ride continues as outside stressors threaten to derail Christine’s progress.
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.
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Hi Christine,
I am new to this site and am wondering if I may ask you what kind of Dr. you are seeing? I need some new ideas about my health. My current Internist has no interest in Fibromyalgia or ME/CF. I am quite miserable and really need a Dr. That cares.
Thanks, Sheryl
Sorry to hear that you’re in this fix. You’re not alone!
Dr. Chia is an infectious disease specialist in Torrance, Ca. His son came down with ME/CFS and he was able to return him to health. I put a link to a page on Dr. Chia in the blog. Good luck with everything!
Sheryl, I hope your journey to find a knowledgeable, understanding physician is a shirt one.
Thank you for responding,
Christine
Christine,
Thank you so much for sharing the path you are walking with Dr.Chia.
The vantage point of infectious disease investigation and sharing your treatment regiment is valuable and helpful knowledge.
I look forward to learning more from the exceptional written documentation of your process.
I send you wishes of compassion, endurance and recovery.
Betty Herman
Thank you, Betty, for your kind comments. I am very grateful to know that others are helped through my experience, as I have been through other bloggers.
Praying your upswings outnumber your plummets!
Chrisine
Christine,
Thank you for sharing a part of your journey. Being a nurse and a patient, I can further appreciate reading about the medical appointments, recommendations and your feelings & responses to them. I was especially glad to read that you had good days and less crashes.
It does feel as though my seatbelt is buckled in the car ‘with’ you; like I’m at the appointments along with you and well after. I can relate to your push to feel better. I am amazed that you have found a doctor who cares and has a desire to help you (one of us) with CFS. I am still searching, hoping for one who both wants to and CAN help. It’s tough when the illness seems mysterious in many ways. It’s also quite eye opening to realize that the very medical system I was a part of, has now failed me. It’s crushing, I felt abandoned and lonely. Now I realize I am the one, the one to make choices and find out what I need, as much as I am able. I’ll keep marching on. 🙂
Take care of you. Thanks for the ride. 😉
Laura W.
Laura,
Thank out for your encouraging comments. I discovered Dr.Chia through articles and interviews Cort Johnson wrote when he was at Phoenix Rising. I don’t know where you live, but I believe Dr. Chia works with long-distance patients.
I will pray that you can find the right doctor for you.
Blessings,
Christine
Christine,
Thank you so much for sharing your journey with CFS and Dr. Chia. I just had my first appointment with him a week and a half ago after a year with CFS. I tested positive for Chlamydophilia Pneumoniae as well as Coxsakie B5, HHV6 and Echovirus 9. He is treating me for the C.Pneumoniae first to try and rid my body of the bacterial infection then hopefully I can move on to Equillibrant. I have a family history of RA so he is being a bit cautious to treat it with the Chinese herbs just like you stated in your blog. Sharing your roller coaster ride with CFS and Dr. Chia has been invaluable and I thank you for taking the time, even when it’s almost impossible, to tell us how things are going. I’m praying that things get better for you quickly and that someday we can all share in Crash Free Days!
Amy
So glad you have discovered Dr. Chia too, Amy! Thank you for your comments. I was so helped before my first appointment with him through a blog of another one of his patients (http://quixoticmeblog.blogspot.com/?m=1) who is documenting his journey, so I am grateful Cort has given me the opportunity to write on his website to, hopefully, encourage others. I appreciate you sharing about his cautiousness with your treatments. He isn’t a “one size fits all” guy, but very individualized in his treatment plans.
Enjoy your ride! I would love to hear how it goes for you and will pray that his treatments are effective for you.
Christine
Thanks for your response and support Christine. Thanks to you and Cort’s posts, I was turned on to and have been following Quixotic’s blog as well. As part of the CFS community, I don’t know where I’d be without people like you and Cort sharing and updating information. Knowledge and understanding of this disease is one of the most important resources we have in the uphill battle. Keep up the great work and thanks for sharing your stories. I’d love to share information on Dr. C and keep you posted on my journey.
Cheers,
Amy
Hi Christine,
I’m glad to read about the journey of a fellow blogger (‘sister’ blogger?) — seems we’re all filling up that roller coaster. It’s great that you’re seeing someone who offers expert care and I’m interested in the course of your taking Equilibrant. I’m a patient of Drs. Klimas and Rey in Miami and they’ve got me on Immunovir. No one ever mentioned the auto-immune stuff, but that’s something I definitely will ask about.
Hope you live closer to his California office than I to Miami. It’s a three hour plane ride from New Jersey.
Cheers,
Carol Lefelt
Thanks for your affirming comments, Carol. Did you find my posts from my first two appointments with Dr. Chia on this website? That will give you a picture of my course of treatment with Dr. C from day one. Also, check out the blog I mentioned to Amy, above. http://quixoticmeblog.blogspot.com/?m=1
I would be interested to know what Drs. Klimas and Rey say about the autoimmune issue. Perhaps you can let us know when you have opportunity to see them again.
I live about an hour from Dr. Chia’s office…so he is practically in my backyard! A huge blessing!
Will pray the immunovir is effective for you.
Christine
Hi Christine, I realize this is a super old blog post. I just started seeing dr chia and found your blogs. So encouraging to read. I was wondering if you are still seeing him and how you are doing now? I would love to connect! Blessings!