(Follow Christine, a long time chronic fatigue syndrome patient, as she searches for relief with infectious disease specialist, Dr. John Chia, who believe enteroviral infections are the heart of the problem for many patients. Thanks to Christine for sharing her story. Interested in sharing yours? Click here. )
My journey with Chronic Fatigue Syndrome (ME/CFS) has been pretty normal. Normal for people with this illness. I became ill in 1993…with a “flu” that never went away. I was blessed to have a diagnosis one year into it, by an apparently little known CFS researcher and clinician at Loma Linda University Medical Center, Dr. Allen Schwandt.
Dr. Schwandt was an allergist. His theory was: find the allergies; avoid everything that tests positive; shoot myself with antigens for what could not be avoided; and go on a strict…nothing but meat protein and lettuce…diet for 6 weeks to see if there was improvement. After over 2 years, none of this helped. Ambien was the greatest benefit at that point, since I hadn’t been sleeping… at all! (Interestingly, no one at Loma Linda now seems to have a clue about ME/CFS!)
Having attempted many treatments…including physical therapy, pain management, medications for nerve pain…my symptoms were up and down as I repeated the push-crash cycle innumerable times…until 2006 when I went from bad to worse. This led to my retiring in 2008 from a full-time ministry which I had managed to maintain to that point. My health continued to decline.
Finding Dr. Chia
Fast forward to 2012. Actually…back to 2007, when I read (thanks to Cort) about Dr. John Chia’s research with enteroviruses. I found it hopeful in the same way I found the XMRV “discovery” in 2010.
But in May of last year, I realized (also thanks to Cort) that Dr. Chia actually sees patients and that his office is only about an hour from my home! Having discovered that Dr. Chia is covered by my medical insurance…finding out through his office that he sees one new patient per day…and having gotten his required referral from my current internist assuring Dr. C that I had been diagnosed with CFS…I called in June and received an appointment date for November. Not a long wait, I figured, since I’d already been waiting 19 years for some medical hope!
Pre-Appointment Blood Tests
In advance of my appointment, Dr. Chia’s office sent me an order for blood tests. This was my first sign that maybe something in black-and-white would show that I am really sick…AND that something could be done about it. He was testing me for things for which I have NEVER been tested. I was hopeful that if I fell into the subset of PWME that have these viruses, he could help me!
As I waited for my appointment, I asked on the PR forums how I should prepare. I received great help! I put together:
- a thorough medical history from childhood
- a list of my ME/CFS symptoms at onset and currently
- treatments I have tried and the results
- what exacerbates my symptoms
- my current pattern
- a family medical history
I was also fortunate to discover through PR’s forum a blogger who had written about his first appointment with Dr. Chia in May (http://quixoticmeblog.blogspot.com). It gave me a great deal of help in knowing what to expect. I was hoping my expectations were not set too high. But do you really know that until reality happens?
I was not disappointed. Dr. Chia spent an 1½ hours with me (and my friend, who drove me and provided another set of ears and a fully-functional brain!) explaining: (1) my blood test results; (2) how enteroviruses live in cells; (3) how one becomes infected with them; (4) how that leads to ME/CFS; (5) what he has discovered that helps…as well as very thoroughly answering my questions. I’ll take these one at-a-time.
My blood tests showed:
- high antibody titers for COXSAKIE B1, B2, and B4
- out-of-range numbers for ABSOLUTE CD3+ (mature T cells) & CD4+ (helper cells) & ABSOLUTE LYMPHOCYTES
- high index value for CYTOMEGALOVIRUS antibodies (IGG)
- high titres for HERPESVIRUS 6 IGG
- high titres for PNEUMONIAE IGG
These, apparently, show past infection. Dr. Chia explained the only way to fully determine current infection is through biopsy, but that this wouldn’t change his treatment plan.
How Enteroviruses Live in Cells
Since enteroviruses live inside the cells, hiding in RNA strands, they can reactivate, multiply, and travel to any place in the body. He explained that it is highly likely that these viruses are the cause of my sleep issues (an infected hypothalamus), muscle and joint pain, gut pain, diverticulitis, peripheral neuropathy, heart valve disease, recurring bronchitis, post-exertional exhaustion, orthostatic intolerance (mine is mild), brain fog, and of course, fatigue. The only way to be sure is to biopsy all the suspected infected organs, which isn’t practical (especially the brain!). When he does a biopsy, he takes it from the stomach.
How One Can Become Infected with Enteroviruses
Enteroviruses invade our bodies through contaminated water. He asked about camping trips, ocean swims, and trips out of the country. (I remembered that I had tent-camped in Utah just prior to becoming ill.) This would explain outbreaks in communities and in families.
How Enteroviruses Can Cause Chronic Fatigue Syndrome (ME/CFS)
>When the enteroviruses invade, if our immune system is compromised through stress or other illnesses, they take hold. (I was under extreme stress at the time I first became ill.) As our weakened immune system attempts to fight off these viruses, without success, it gets knocked into tilt…lowering the Th1 and raising our Th2. Enter ME/CFS! Whenever we are in stressful situations, or exert ourselves physically or mentally, we trigger our immune system and we crash. Every time we encounter viruses of any kind, our immune system seeks to eradicate them, and we crash. That’s why we can sometimes predict the crash and other times we cannot. (Dr. Chia is not a fan of Graded Exercise Therapy!)
How To Treat Enteroviral Infections
Since there are apparently no anti-virals specifically designed to kill enteroviruses, Dr. C began experimenting with Chinese herbs and, over time, developed a formula (Equilibrant), with the primary ingredient of oxymatrine. It’s my understanding this formula seeks to balance our immune system so it can reduce the effect of the multiplied viruses. Dr. Chia has his own trusted sources for the ingredients.
That leads me to…why I trust Dr. Chia:
- His reputation in the ME/CFS community.
- He is not getting rich from his research and treatment of patients.
(He charged my insurance no more than my primary does for an office visit. My primary spends 15 minutes with me!) Equilibrant taken at the maximum dose is $90/month. (Some patients take less than maximum dose.) If there is not improvement in 3 to 6 months, he discontinues that treatment. If there is improvement, the treatment continues for about 2 years, with a possible low-dose maintenance.
- He has already experimented with very expensive interferon infusions and found they did not help enough to justify the expense for his patients.
- He trusts his patients to know their own bodies.
- He tells you up-front that 52% of his patients improve. (may not be great odds, but the best I’ve ever had!)
Dr. Chia instructed me to begin Equilibrant at ½ pill per day and to titrate it up slowly at the rate of ½ pill every 1-2 weeks, depending on how my body responds to it. If it is effective, the expectation is that when beginning, and each time the dosage is raised, one will react with increased symptoms, then improve. This method is continued until there is no improvement or the maximum dose of 6 per day is reached.
Results Thus Far
Since I began Equilibrant in November, I have had some of the best days I have had in many years! I was able to do more through the holidays than would have been possible a year ago. And I am sleeping better. I am just now at the maximum dose. I keep a daily record of the amount I’m taking, my activities, crashes, and when I take pain medication. I have also put together a graph/chart so I can easily see the patterns.
My internist prescribes Vicodin for my pain, at a maximum dose of 2 per day. In the last 2 months I have required less than ½ the amount I had been taking. I still take sleep medication and nortriptyline for nerve pain. Over the last couple of months, my crashes have become more about fatigue and less about pain, and are coming several days, rather than immediately, after increasing my dose. Yes…I still crash. I think part of the reason is that I have been pushing my activity level too far on my good days, so have had some episodes of push-crash. (This illness takes so much discipline!) I’m also hoping this is a sign of a “good” reaction to increased doses of Equilibrant.
It is February and I have my second appointment with Dr. Chia tomorrow. I have done further blood tests in advance of this appointment. His office called me today to see if I could come earlier so he could have more time with me! (His staff is very helpful and kind.) I’m anxious to know what the blood tests show, if he thinks I’m showing signs that the Equilibrant is helping, if I should back down my dosage, and if he is going to prescribe other supplements and/or medications in addition to it. I understand he sometimes adds anti-virals to the treatment plan…mainly Amantadine or Epivir.
I am very grateful to have found Dr. Chia…and that he has found specific viruses in me to treat. I am hopeful that I will continue to improve over the next two years.
- Check out our Dr. Chia Resource Center for more on his approach to ME/CFS, links to interviews with Cort Johnson, video’s and his published research
- Oxymatrine (Equilibriant) and ME/CFS – learn more about Dr. Chia’s main treatment focusPlease Support Health Rising!
Please Support Health Rising!
Like this blog? Make sure you don’t miss another by registering for our free ME/CFS and Fibromyalgia blogs here..
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here