(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.
Christine’s experience with Chronic Fatigue Syndrome (ME/CFS) has been pretty normal; lot’s of options – not many results. Now she’s seeing Dr. Chia.
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
Dr. Chia found 80% of upper GI biopsies of ME/CFS patients tested positive for enteroviruses
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.
Test Results
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
With no antivirals yet developed specifically to treat enteroviruses, Dr. Chia has developed his own herbal preparation called Equilibriant
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!)
Treatment Plan
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!
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Hello Cort and Christine,
This is a very interesting blog. I am considering going to Dr. Chia and was wondering if, Christine, you would like to speak with me about it. I can call relatively inexpensively by phone. Do you have a way we could contact each other? Cort could share my email with you if it was okay with you guys.
Thanks for the blog.
All the best.
Val
Thank you for your comment, Val.
I have sent you an email : )
Christine
I disagree Dr Chia is not getting rich. 90 dollars a month is a lot when there thousands of desperate me sufferers
I’ll let her know Valerie…I find Dr. Chia really interesting. I didn’t realize until recently that he had been seeing ME/CFS patients since the early 1990’s after his partner at the time wrote an article on EBV and CFS…An infectious disease specialist he’s been examining patients for viruses and pathogens almost as long as Dr. Peterson and Dr. Klimas yet he’s come to some different conclusions. (Dr. Klimas does use Equilbriant at times). He also seems to have pretty good success rates..About a quarter of his patients he can’t do anything with, if I remember correctly but he has success, from large to moderate, on the others. It’s really fascinating. 🙂
Great read, thanks Christine and Cort!
I loved the three-part Dr. Chia interview that was recently featured on ME/CFS Alert as well.
I have never had some of these pathogen tests and find his work hopeful. I wish he wasn’t on the other side of the country or I would be there in a heartbeat. I am floored that he accepts insurance and that he charged you the same as a 15-min GP visit! Speechless…..
Thank you, Kristina!
Did you know there is a 4th and final video of Dr. Chia’s interview on MECFS Alert?
Perhaps you could contact Dr.Chia’s office to see of they know physicians in your area who follow his protocol. Also, it may be possible for you to have blood tests done near you, by his orders, then have him interpret them. I do know he sees patients from all over the world. How he works with long-distant patients, I don’t know, but it might be worth looking into.
There has to be a way for you if this path can help you!
Thanks again for your kind comments!
Christine
Christine, thank you for the nice write-up of your experiences with enteroviral treatment. It looks like you didn’t need a stomach biopsy to start treatment?
I see he also says patients with autoimmune and seizure manifestations should not use equilibrant.
I wish you continued progress all the way to being cured.
Zac
Thank you, Zac!
I had blood tests that showed enterovirus. Dr. Chia said a biopsy wouldn’t effect my treatment plan. He seems to be very careful about not doing things that won’t be of great help.
I plan to ask the autoimmunity question when I see him in May, since I had read that he said Equilibrant shouldn’t be taken by those who have autoimmune disease. He asked me in my second appointment if I had ever been diagnosed with Rheumatoid Arthritis since my rheumatoid factor was high. I haven’t. I’ll be writing a follow-up regarding my 2nd visit soon.
Thanks again for reading, and wishing me progress. I hope you find the treatment that will give you the most help. This trial-and-error business gets so wearying! I’m determined to give this one at least the 2 years Dr. C said it would take, as long as he thinks I’m progressing…even though it feels the opposite at times.
Blessings,
Christine
Very interesting, Christine. Even with the high rheumatoid factor, he let you proceed with the treatment. I suppose he deemed it a beneficial risk to proceed because you had positive enterovirus testing. In his 2009 interview with Cort, patients with joint pain and positive rheumatoid factor weren’t recommended to trial this treatment. It makes sense that doctors are always fine-tuning the recommendations on their treatments.
I guess there is still some possiblity for me to try this treatment with my positive ANA titers. I will wait for further word.
Oh, one other question, Christine. Have you ever tried echinacea? It shook me up badly. I believe it overstimulated my immune system.
Hi Zac,
At my 2nd appointment, Dr. Chia told me to back down my dose to 5 per day, since I had been experiencing exacerbated fatigue. I’m backing it down further at this point because I’ve been crashed about half the time the last month, and pain has returned the last few weeks. As I looked at the graph/chart I keep…I was doing better on 4-41/2. I am anxious to ask at my next appointment about the rheumatoid factor.
Your comment about doctors fine-tuning treatment was very encouraging. It has proven true in Dr. Chia’s treatments since he began seeking a cause and cure for ME/CFS. I forget that he continues to do this. He relies not only on what his lab research shows, but gives a great deal of weight to what his patients report. The truth is, if he did nothing more than acknowledge that I know what I feel like physically each day, it is worth seeing him! But I am blessed to live near his office and, fortunately, he offers much more than that!
With your high ANA titres, have you been diagnosed with lupus?
No, I haven’t tried echinacea. Based on your experience, doesn’t look like a good idea!
I’ve written the post on my 2nd appointment….so be looking for it. I’m confident Cort will post it at the appropriate time for the website.
Thanks again for reading and encouraging. Encouragement is something each of us needs as we move through the ups and downs if this illness…especially when we’re having more downs than ups!
Rest Well,
Christine
The ANA titers show a lupus pattern. I haven’t pursued a diagnosis in that area, though. I’m hoping they’ll solve the ME/CFS illness that I’ve had much longer. The positive ANA’s didn’t change any of my ME/CFS symptoms.
Echinacea is probably fine for most people .. I just didn’t react well to it multiple times. Feels like overstimulation to me.
Hoping Dr. C will make progress in treating enteroviruses combined with an autoimmune condition. Maybe treat a little of both at the same time. Or maybe treat the autoimmune first. I don’t know. Or maybe something completely different. Hoping he makes headway there.
I’ve been noticing that the more pain the less fatigue. The less pain the more fatigue .. all other factors being equal, that is. I have learned to vote for less pain.
Take care
My name is Kristy and I am a patient of Dr. Chia now for 12 years. I have been dx’d with Epstein Barr which is how I was referred to Dr. Chia. This doctor has such passion on this issue. After a panel of blood work Echovirus, Coxsackie and CMV also showed up. I had a biopsy of my stomach as well. Equalibrant didn’t work for me so he asked me to stop. I will try anything because I always ask myself why not me. Who else is going to do this for the generations behind me. I spent my 40’s in bed and I’m am working on not spending my 50’s in bed.
I have tried all that he has had to offer. Some have given me a reprieve for a few months and some have not worked. One thing I have learned through this process is it’s not a cookie cutter deal. Not one size fits all.
I am currently working with him on another treatment that is in a experimental stage. I am coming into my 4th month and I am finding that I am getting the only way I can explain it is energy surges. Which I have not had in quite a while. I feel hopeful. I believe in this doctor and his passion to help others.
I’m happy to have Dr. Chia on my side working together to find something to either cure or at best put all this in remission. One thing I have noticed is at other times prior to this new treatment (I can’t name it because it is in it’s experimental stages) when Dr. Chia would put pressure on a certain part of my stomach I would about jump to the ceiling. I am happy to say, small but so BIG for me, last time I saw him 3 weeks ago, he put pressure in that same area and I felt no pain.
Tomorrow I go have blood work done to check my liver, kidneys etc due to the treatment. He may extend the 4 months to 6 due to me handling it pretty well.
Since I started this as well I went and bought a NutriBullet and have been juicing veggies and fruit with boosters of nuts, chia seeds (lol sorry that just sounded kinda funny). I pray pray pray for all of us and for Dr. Chia in all he does.
Thank you for allowing me to share.
Thanks Kristy for sharing your experience and good luck with the new treatment. (This definitely is not a cookie-cutter disease :)) Please stop by again and let us know how you’re doing.
Thank you, Kristy, for sharing your journey, thus far, with Dr. Chia. He has mentioned to me the possibility of a new treatment on the horizon. Thank you for being willing to give it a try ahead of others. It sounds very promising for you! And it’s very encouraging to know, as I suspected, that he doesn’t give up on his patients!
I’ve got the same hot spots in my abdomen, which he checks every time I see him. There hasn’t been a change for me there…yet. So glad yours is better! That seems huge to me!
Thanks for sharing about your juicing. I’m considering trying JuicePlus, which is dehydrated vegetables and fruit in capsule form…so your comments are very helpful. Apparently Dr. C thinks it’s a good idea? Would you share what he has said about it? Chia seeds huh? That IS funny! LOL : )
If you don’t live far from Dr. C…we may practically be neighbors : )
Blessings…
Christine
I am writing from Italy, I have 25years old and I am seriously ill from 8 years.
Can you please tell me how Lab Doctor Chia advises for the analysis and how many days to have it ready ?
As I would like to take an appointment with him I would like to know all the
analysis he requires, can you send me by e-mail the list ?
I thank you very much if you will help me as in Italy we have no CFS doctors.
best regards
Anna
Hi Anna
You can find more information here – http://www.cortjohnson.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/dr-john-chia/ Good luck!
I am not sure how Dr. Chia works with international patients, but I believe he does so. I would encourage you to contact his office through the information Cort has provided on this website.
I will pray you are able to connect with him or another specialist who will be able to help you….perhaps one that is closer to home. And I will also pray that you have supportive family and/or friends to encourage you.
Keep pressing on in hope, Anna!
Christine
Hi Everyone- I just picked up my first box of Equilibrant.
I am nervous, though, to start them because I have read (and Dr Chia said) that you may be hit with a flare for a bit. Has everyone experienced this? And if so…do you know why the herbs would stress the immune system to allow for a flare?
I’m traveling a ton for work for the next 5 weeks and can’t be feeling sick or “hit by a bus”!
Thanks in advance!
Lisa
Hi Lisa!
My experience with Equilibrant has been a flu-like flare-up 2-3 hours after taking a dose for about 3-4 days. Each time I raised the dose by a half, I got the same hit. I would level off and actually feel much better with more energy on the 5-6 days till I raised the dose usually on the 7th day. When I came to a dosage that did not bring relief after a week, I would then lower the dose by half. The idea is to find the right dose for you…but it is very much a roller coaster ride! When I had events or full schedules coming up…I would delay increases because of the expected flare-ups. These flare-ups are actually a good sign. As mentioned in my post above…it is evident the immune system is working to rebalance itself.
After I found my “ideal” dose and stayed on it for several months, Dr. Chia has added other immune modulators and anti-virals. Each time I have added something new it was trial and error with both the new medication and with re-adjusting my Equilibrant dose. (My most recent experience will be posted in the next week. See also my posts which followed this first one for more info.)
Dr. Chia told me when I began treatment with him that it would take about 2 years to discover what will help me and what will not….based on what was available at the time (14 months ago). It is all very individual and quite a ride! Personally, I wouldn’t attempt it without a physician’s supervision. There is a danger of being tipped into autoimmunity.
Thanks for reading. I wish you the best in your Equilibrant journey!
Christine
I also have enterovirus and would like to connect with others.
I’m so happy to have found this discussion on Dr Chia’s work. I had my 2nd appointment about a month ago at which time I went up to 2 Equilibrant per day. My symptoms seem to be getting worse, however they are mostly related to IBS which I have suffered with for over 2 years now. I am 78 years old and was diagnosed with CFS in 1989 after having symptoms for over 2 years. My situation is very complicated but I have hopes that I will see some light soon. The aging factor is another complication but I feel I still have much to offer if only I could regain some energy and get off this f—ing couch. I have terrible depression which only makes things worse. Anyway, thank for sharing your experience.
Good luck Sara!
I feel the same way as do all of us I guess; I could offer so much more!