Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time and tell you straight away that it was not worth the trip. I don’t really feel like I learned anything new or found access to treatments I couldn’t have tried without him. That doesn’t mean I regret the trip, it just means, if someone else in my position asked my advice, I would say, “Save your money and your energy.” The journey, for me, became the challenge early on. I wanted to know if I could do it. I wanted to test my boundaries, I wanted to see if I could leave these four walls and find out just how bad the payback would be. It was also about testing a different location, spending time with my mother and giving my husband a break. So, I had a lot of different fuels feeding the engine, if you know what I mean and, without even one, I might not have made the trip. In the end, because I left early and Dr. Chia didn’t really give me anything, it was purely the challenge. And I’ve decided that is enough. It bolstered my confidence and reinforced how resilient I am — we are.
With my mother outside Dr. Chia’s office.
Here’s what I thought about Dr. Chia before seeing him: I knew his son was sick with ME and recovered. I knew that Dr. Chia believes that enteroviruses are the root cause of this illness and that he has conducted studies that supported his theory, but the rest of the ME research community hasn’t taken up that torch and done bigger, better studies to replicate. I thought he would offer Equilibrant, his Chinese herb formula with which many people have had some success, and he might consider antivirals. My main impetus for seeing him was to get the testing that none of the other 40 doctors I’ve seen has done and also to see whether he thought I was a candidate for antivirals. Of course, I forgot to ask him about antivirals because I forget everything when I’m in a doctor’s office.
My mother holding the massive binder of test results that we carted down to California and then never opened.
My appointment was at 4:15pm on a Friday, so I was worried about rush hour and LA craziness, but Google maps was accurate and it only took us half an hour to get there. His office is in a nondescript brick building in a sort of strip mall in Torrance, CA. I’m a big fan of Stephen King and liked that the office was in an area named after the possessed protagonist of The Shining. š The waiting room was barren. We (my mother and I) waited about 20Ā minutesĀ and then went in and had the normal nurse stuff done. I noticed she wrote on my file that I was there about “chronic fatigue” and I mentioned that it was actually ME ~ or even write “CFS”. She said, “Well, it doesn’t matter because he only sees patients with your condition.” Sigh.
We waited probably about another 15 minutesĀ for Dr. Chia and, when he came in, he was off like a rocket. He did not stop talking for an hour and 15 minutes. After about 10 minutes,Ā he said I could record him, thank god, because I didn’t remember to ask and I have no memory of anything he said in those first few minutes. Dr. Chia was kind and pleasant. Not in any way intimidating or arrogant. I guess I would call him dogmatic without the ego. He seems slightly frustrated that nobody else realises enteroviruses are the root cause of so many chronic illnesses and told us many stories of other patients and studies that support his contention.
A few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, he just ran down the list and discussed how my immune system had collapsed. I couldn’t help thinking none of this needed to be done in person since I was basically just a set of ears, but I know the law says I had to be there in the flesh. He also did a quick physical exam and neurological work up.
Here were his main points about my history:
- As an infant, my immune system shifted into Th2 dominance with pneumonia and ear infections and asthma, which is an inflammatory disease. Instead of just fighting off infections with an increase in the Th1 branch of the immune system and then resetting back to equilibrium, mine shifted into Th2 and has been continually off kilter my whole life as it got hit by different viruses (bronchitis, ill while traveling in Central America, viral gastroenteritis from lake in Virginia etc. etc.). He gave an example of people who encounter the polio virus: just like the lake in Virginia, only a few out of hundreds exposed to polio will become crippled and the difference is the amount of gammaglobulin IĀ (and others)Ā have and my compromised immune system. He said enteroviruses are the second most common infection after the common cold and that viruses are often transmitted through water. He gave the example of Joseph Melnick at Baylor University who studied viruses that live in water from sewage contamination and spread to humans through shellfish, showers, colds and swimming. He also said the Russians wrote a paper that concluded the most common risk factors for contracting meningitis are swimming (30%), camping (20%), contact with sick people, and drinking well water.
- Doctors repeatedly prescribed antibiotics for viruses and worsened my situation. The dark circles under my eyes are typical of this.
- With Th2 dominance, comes allergies.
- Night sweats are a classic sign of Th2 dominance ~ along with pain and sore throats, they are my immune system trying to fight off the viruses. But, “viruses are like weeds” and replicate exponentially. He said post-exertional malaise happens because activity causes viruses in the muscles to become metabolically active and replicate, causing pain. “The more activity you do, the more viruses replicate.”
- Tonsillectomies are very common in ME because the body is fighting off the viruses and causing chronic sore throats (my early teenage years).
- Vaccinations commonly cause ME and relapses (I took every vaccination I could get my hands on because I thought they were protecting me and didn’t realise they’re not for everyone).
- He suspects a brain stem issue because of vasovagal syncope history, neck problems and dysautonomia symptoms.
- He said that he has seen cases of ME caused by invasive dental work alone, so he thinks my history predisposed me, but having acute bronchitis, viral gastroenteritis, lots of dental work and then the flu shot all in the space of 3 months definitively tipped my immune system to ME. He said, “The flu vaccination is what did you in.”
- My tender abdomen he said was my terminal ilium and that was typical with enteroviruses living in the wall of the small intestine.
He said I might have contracted new infectious illnesses in the past 3 years, but, whereas healthy people fight off viruses locally (i.e: facial symptoms with a cold), I fight it off systemically and all my ME symptoms flare. My mother and I heard loud and clear that contracting another virus would be incredibly dangerous for my recovery and my future health. - He said that there was a sewage leak into the lake at Incline Village in 1984, before the initial ME/CFS outbreak and that everyone got sick in the summer when they jumped in the lake. He said he is the only person in the US working on enterovirus research and he has found the virus in the blood and stomach lining of patients and has also done studies (injecting mice with enteroviruses and those that were initially immune deficient died). He said the CDC will soon be reproducing his work, he hopes.
Blood test results:
- My T-lymphocytes are okay. CD4 is a little low.
- Echoviruses, chlamydia pneumoniae, CMV, Creatine Kinase, IgA and CRP are all negative or within range.
- Coxsackie B 4 and 5 are high. Type 4 is very high.
- IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.
- HHV 6 IgG antibodies are very high.
Treatments:
- He mentioned interferon, but said it is a very difficult treatment and short-lived.
- He mentioned Epivir, an HIV drug that helps about 30% of the time, but didn’t want me to consider it now.
- He told me to watch out for lakes, rivers, shellfish and not to drink the LA tap water.
- He said I could try sublingual vitamin B12, coQ10, magnesium and vitamin D (all of which I take except B12).
- The most important treatment he thought I needed was 5 – 15 grams of intravenous gammaglobulin to replace what I don’t have and modulate my immune system. He kept reiterating how much sicker I would be if I caught another virus, so he thought I should get IVIG twice a year and again whenever I travel anywhere (although, he said I probably shouldn’t travel). He wanted me to see an immunologist to get it, but it’s very expensive and the immunologist would want to inject me with a pneumonia vaccine to determine whether IVIG was necessary by my immune response two weeks later (I find this all very frustrating and wish that Dr. Chia could just give me a requisition form to take to a Seattle hospital so I don’t have to go through the rigmaroll of finding another specialist to determine that I need a treatment that this specialist says I need! It’s also frustrating because I won’t let a vaccine near me for the rest of my life and some random immunologist probably won’t take Dr. Chia’s word for it). If I can’t get IVIG, he said I should get 2 mililiters of intramuscular gammaglobulin, which will last for a few months.
- He also gave me Equilibrant, his own proprietary blend of vitamins, minerals and herbs, and told us the story of his son’s recovery once he was taking 9 pills a day. He wants me to start on Ā¼ pill for a month, then move up to Ā½ for another month. I should expect an increase in my symptoms for 7-10 days. My problem with Equilibrant is that it has a bunch of fillers and crap in it: Dextrose, titanium dioxide, Yellow #5, Blue #2, Carnuba Wax etc. I still think I’ll try it, but I haven’t gotten the nerve up yet.
Honestly, the best thing he said to me during this whole appointment was, “You’ll get there.” He said since I’m so much better now than I was last year, my body is recovering and I just have to try to avoid getting another virus. After hearing Dr. Peterson say that he has never had a patient recover, it was nice to hear Dr. Chia say that I would get there…. I know “there” will not be where I was pre-ME, but I’ll take pretty much any there over here.
Rag and Bone Shop of the Heart 
I really wish Dr Chia could have offered you more but at least you got a road trip, time with your mum and those lovely words “you will get there”.. because you will. Like you say we humans are strong, often stronger than we credit ourselves. Toasting you Ms E Milo… chink, chink!! š x
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SlĆ”inte, Marie. Here’s my decaf tea cup clinking yours. š
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Wow, lots of good information! I agree you didn’t really need to be there in the flesh.
“IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.”
Had you ever had them tested before? Were they below the normal range, or low normal? If you were able to do the vaccine test and you responded abnormally, insurance would for sure pay for IVIG which can be really tough since each infusion is so pricey. Maybe the immunologist could make a case that since vaccines are detrimental to people with your health condition and your Igs are low, you should be granted access to IVIG without the vaccination test.
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I had never had IgG subclasses tested before. I wish. But, that was the one thing he repeatedly said I should try. He also said exactly what you did — that, based on my history, an immunologist should bypass the vaccine challenge and just try IV or IMIG. Your cost figure (what was it? $15-17,000??) was like a bucket of cold water over my head. I have Medicare, so I’m sure I’m out of luck.
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You should get the IgG testing (without vaccine) because if you are deficient, IVIG is the treatment. It is crazy expensive!! Also, if you’ve ever had any vaccination and it is still current, they can test your antibody levels against the illness and see if they are where they should be.
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The IVIG is crazy expensive I meant. I think the IgG testing should be covered based on your presenting symptoms.
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Two types have been discovered: human herpesvirus 6A (HHV-6A), A is rare, and acquired in adulthood, and human herpesvirus 6B (HHV-6B), B is common, usually acquired in childhood. Both A and B can reactivate at a later date, and are believed to contribute to diseases of the bone marrow and/or central nervous system in some people. HHV-6B has been associated with a variety of viral illnesses, including exanthem subitum, roseola infantum, fatal encephalitis, focal encephalitis, mononucleosis, lymphadenopathy, myocarditis, myelosuppression, and pneumonitis.
http://www.herpes.com/hhv-6.html
That was a lot of info. Certainly info is always good to gain, and a little ray of hope is nice. Having tests done that other docs won’t do is nice too. Seems like the whole point of his “speech” was take vitamins and supplements to help repair the immune system to fight off future viruses, so it can work on the present one(s).
I am kind of disappointed, but on same page as you, wasn’t a wasted trip. It certainly was a LOT to go through just for that ,but we all know how a first doc apt goes at any doctor, and even having to drive a couple hours is an inconvenience. Flying to another state for a “meeting” is a lot of time, money, and energy.
Thanks for sharing all that information though. It is helpful and interesting.
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I have reactivated mono, that’s why I put the info about the HHV6 since your levels were high.
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Elizabeth, if you are interesting in this, there is an EBV DNA test that is more accurate than the antibody testing since it is actually measuring the levels of the virus in your blood. Just make sure you get it taken when you feel you are flaring (which I know is almost always, but you know what I mean). My insurance, which was BCBS at the time, covered it.
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Thanks for sharing the HHV6 info. My blood tests don’t specify whether the antibodies were specific to A or B, but my new ND here in Seattle thinks I have reactivated bacterial and viral infections. Who knows. She treats with supplements, too, so really no new info or treatment anywhere. You summed my appointment up perfectly!
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Jackie, interesting about the EBV DNA test. I actually had EBV tests run by my new ND recently (EBV early antigen Ab, IgG; EBV ab VCA, IgG; EBV nuclear antigen Ab, IgG) and all were quite high. She thought it was indicative of an active infection, which blows my mind.
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Elizabeth, thank you for sharing all of this. So distressing to read most of it. But I loved the last bit of him telling you that you will get better. I so much want that for you. You done good.
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Thanks, my friend! Yes, a little bit of hope goes a long way. X
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I have one “off topic” thing to say Elizabeth, Do you know how amazing it is that you have blogged about all your trial and errors, doctors appointments, symtpoms, tests etc? You can look back and see everything you have done/tried. I forget, a lot of times, why I stopped taking a certain medication, or what doctors said to me etc. This is helpful for yourself, but it does help everyone else too. So, I want to say thank you for the blog!
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Thank you SO MUCH for this comment! I started treating this blog early on as my health journal and I come back again and again to check on my test results or the timeline of things or how I was feeling at a certain time. I think it can be tedious to readers to essentially be reading an illness diary that’s unique to one person, so I’m thrilled to hear it can be helpful. š
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Sigh. I’m sorry to hear all of that effort felt a bit futile. I have felt the same about seeing doctors the past couple of years, there’s really nothing they’ve ever doneāno matter what the specialityāthat couldn’t have been done by just looking at test results I already had. It’s not like they look into our souls or something.
Your test results and symptoms are a lot like mine. I don’t have a lot of POTS, though I do fall apart pretty quick if I’m standing more than 5-10 minutes. Otherwise, similar in many ways.
Had a couple of thoughts that might be helpful. Do not push it on the Equilibrant. My experience with it was that I initially did get some flu symptoms–intense ones too–that i hadn’t had in years. Coughing, sore throat, burning sinuses,fever.it was like an ‘instant flu’ pill. Also pretty greatly increased pain as well as more abdominal-digestive issues (one of my biggest problems already). The big lesson I learned though, was thatā¦it wasn’t just getting through the cycle after each dose, after a few days of it, I seemed to have a bigger crash. So, I was trying to push the dosage a bit too fast (still slow, though, I get affected by things) and would get through the just-after hit it would cause, but then I realized I was getting REALLY sick, like it was building up. So, go slow, stay slow, give it a long period to determine how it’s working you over (or hopefully not so bad).
With IVIG (or sub q IG), there is another possibility for getting insurance to pay, without the many-strain vaccination challenge. If you have small fiber neuropathy, that is normally covered as well. That requires a small biopsy, but doesn’t have the scary what-am-I-doing-to-my-immune-system thing happening, the results are faster (the vax challenge takes a long time).
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Michael, I don’t have POTS, either. I have dysautonomia symptoms, such as orthostatic hypotension, syncope, fatigue, but my HR doesn’t go high and STAY high.
It was very helpful to hear your experience of Equilibrant, thank you. You are a wealth of information! Abdominal/digestive issues have become one of my biggest problems in the last 6 months, I definitely don’t need to exacerbate those or go back to my nightly flu. I needed your caution because I always, always move too fast with treatments.
I doubt I have small fiber neuropathy… isn’t that very painful? I have Raynaud’s and numbness and electric shock-type issues in my lower legs and feet, but not pain. Still, something to consider.
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I’m glad to hear pain is not part of the picture for you, at least not the neuropathic type. We do have a lot of symptoms in common, I think I had it in my head you had pain. It’s one of my big issues.
I really wish you’d gotten more answers or guidance. I saw the comment about EBV. I have really high EBV (and mycoplasma and parvo) IGG titers. From the beginning of being sick, I’ve been told contradictory things about how relevant those things are. I’ve heard Chia say he thinks enterovirus causes viral reactivationāand lyme doctors think that causes viral reactivation. Who knows if it’s true, but I think it’s very common. And maddening.
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Travelling: I wanted to get back to you on your question via FB re travelling and thought I’d post here in case others benefit. BTW I don’t blog but if there is a good larger forum (Phoenix rising or other) ? That you or others recommend let me know if I should post.
First check out this beautifully written (another great Irish writer) blog post about travelling with me – pros and cons below my post.
I love her bubble metaphor and am thankful to say that my bubble didn’t burst on my recent trip back to Ireland.
How it worked for me:
Take travel scooter or wheelchair to door of plane – you skip so Many lines.
Travel business class – we are burning up air miles but maybe you can ask for donations. You need the flat bed to get some kip overnight.
Personally I am dependent on sleep meds right now but it guarantees me 8-9 hours sleep at least 5 days a week which is the number one thing I need for recovery. A day of less sleep was a weeks recovery.
I get to Ireland and I the pm take sleep meds again for 4 hour afternoon nap and then back to bed by midnight and this year I was good to go next day. Last year I needed a few days to recover. You should allow yourself a week of no activity and limited visits if you go.
You want to go to a wedding. This is the hardest thing but I don’t know if it’s worth it in your current state. Last year my parents insisted we take the 3 hour drive to mayo for a wedding and to make it doable, have a weeks hol by the sea. I did no packing and lay in bed all day before we left and lay in bed all day before the wedding reception. Skipped the church. Was brought to dinner table in wheelchair at 6pm as dinner was starting. Thought I’d be fine as no walking and I don’t have symptoms when sitting. Everyone (cousins, aunts) came to me to chat and I was in fine form. BUT at a wedding it is so loud you have to raise your voice so much to talk and it is non stop talking. After 3 hours the pain in my back was unbearable (I went in with no symptoms) and begged my brother to get me a taxi back to cottage. I couldn’t talk (never had that problem before), couldn’t undress myself and fell into bed. Spent next day in bed and eventually recovered enough to enjoy a couple days out later in week. Probably not worth it. Maybe you just go to the church as less talking and this friend means so much for you. But everyone wants to say hi and it’s a huge adrenaline user. Tough decision. Xo
http://whatwillhappentome.net/2014/07/15/ive-got-to-get-out-of-this-place-holidaying-with-m-e/
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Really good post, Elizabeth. I’ve been wondering how you’ve been doing (I know I’m way late to this post). Sorry that Dr. Chia wasn’t more helpful but I’m glad you went anyway.
Curious if you’ve tried the Equillibrant yet? (And I agree with you, I don’t know why it has to have all those fillers. Even the high amount of Calcium puzzles me.) Think I’ll ask him about that at my next appointment.
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[…] while my husband was shopping in a Torrance, California Whole FoodsĀ the day before I went to see Dr. Chia and the first time leaving Seattle in two years, there was a public memorial serviceĀ being […]
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I saw Dr.Chia today I left with Equilibrant – Chinese herb I pray it helps tired of being in pain and always exhausted.
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[…] IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the new compounded […]
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[…] may remember last year how I battled between going to see Dr. Kogelnik or Dr. Chia in California and ultimately chose the latter (and made a mistake, I think). Dr. Kogelnik is […]
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