Discussion in 'ME/CFS Doctors' started by BBB, Dec 1, 2012.
is dr. chia still using antiretrovirals?
Has anyone traveled to see Dr. Chia from international waters? His approach to CFS seems to be the most logical, targeting the virus dwelling in the body, rather than medicating the symptoms. x
I don't think Dr Chia has ever used antiretrovirals for ME/CFS patients. Perhaps you are thinking of someone else.
As far as I know, Dr. Chia has never used antiretrovirals. His theory involves enteroviruses. The treatment he is using with me is intended to shift the immune system so it can fight enteroviruses.
there is someone on the other board who sees chia and talks about his use of ARV's like epivir:
i have heard this from someone else, too.
perhaps he is not using them anymore.
Here's my treatment so far and the limited information I know.
My tests showed very high antibodies for Coxsackie B1. So high it is assumed to be active. Coxsackie is an RNA virus, which means it cannot enter the genome. Therefore, the immune systems should be able to get rid of. Chia's theory about enteroviruses and CFS is that the immune system is compromised and can't get rid of it. You can search for his research on pubmed. He put me on Equilibrant, which you can search this forum to find out more about. He builds this up slowly. I don't remember the exact pace I did it at, but it is roughly that you start on 1/2 per day, then every two to four weeks you up it by 1/2 per day. The maximum dose is on the box, which I don't have handy here (I'm in bed). The pace of increase depends on how well you are managing this. He told me his success with Equlibrant is 40%. I doubt that this means cure. I assume it means significant improvement.
The Equilibrant is supposed to shift the immune system so it can fight viruses. There is a common theory about CFS that the t helper cells are incorrectly switched into a mode to fight bacteria or other external threats to the cells. This means they are not in a mode to fight viruses or other internal threats to cells.
After 6 months it looks like this is not working for me. He said my blood tests show no shift in the immune system. Also, I don't feel any better. He reduced my dose from four a day to two a day, and wants me to try this for awhile. He also gave me a prescription for amantadine (see google) if the dose change doesn't work. I looked up amantadine in some CFS books and it has very limited success. But the point is whether it works for me, so we will see.
He also mentioned Gene-Eden-VIR as something that has worked with fibro. I don't have fibro but I have enough experience to realize that sometimes it's just a matter of trying different things until we get lucky.
I will be seeing him again in four months. And remember, this is my treatment. It might not be yours.
You might want to post the figures for your coxsackievirus B and echovirus antibody titer lab results in this thread, the purpose of which is to which is to examine people's ARUP Lab antibody titer results for these viruses.
If I were coming from a foreign land to see a doc, I would go see Peterson. He seams to know the most and is the most on track to me. But, I would keep in mind that there isn't much the docs can offer, just because there has been so little research done on the illness or group of illnesses. We need serious gov money like MS or other illnesses get before there will be real treatment options out there.
I haven't seen him but have met many people who have seen him and heard of many friends of friends who have seen him. He used to use AIDS drugs to treat his patients, I believe. But, now he uses herbs from what I've heard. Someone told me she could have gotten ampligen from him but didn't do it. I've heard great stuff about him, he is a great patient advocate from what i hear, will do paperwork for his patients, is helpful with disability, knows his stuff, but I've yet to meet a patient that got better seeing him. So, I have never gone to him. But, that is not a reflection of his doctoring. I think he's great. I've never heard a bad thing about him.
I would have liked to have tried Valcyte but never known a doc that would use it. Thanks for replying to me about that from the other page, sorry, I don't remember your name.
Ok, I went back cus i wanted to thank you for writing me! Sorry you didn't get better but your experience is similar to what I hear from most patients. Those who get better are usually people who were never that sick to begin with. But, you know, I figure, if you can get out and drive around like I do and you have a roof over your head and food to eat, well, you are doing pretty good in this life. Of course, I didn't feel this way in the first 10 years of sickness. Took some time to let go of getting to be able to have a career or children or find love etc. And it's still hard, but I figure, heck, I'm still alive so might as well try and enjoy what i have, right?
It's so funny, when I first got sick, I was so sure I would get better. Cus, I read all this stuff about people getting better and I knew that I was such a hard worker that I would research things, and work hard, eat perfectly, do all the right stuff and get better. Someone had a really good laugh at that one.
I keep expecting to get better, and I do -- mostly in very tiny steps. I no longer expect to be recovered in the near future. As you said, I get around a bit, have a roof over my head, etc, so I can't feel miserable. Indeed, it pays to enjoy what one has.
yes one must take a buddhist approach with this illness
Thanks for the info regarding Chia. I imagine it varies between patients, but do you know how long Dr. Chia typically keeps patients on Equilibrant before deciding it is working for them or not? Thanks.
I don't know how long. My impression just came from a variety of things he said.
Here is link to my Dr. Chia blog: http://www.cortjohnson.org/blog/2013/02/23/me-and-dr-chia-chronic-fatigue-syndrome/
You will find there a link to Patrick's blog also. He has written about 4 appointments so far.
Hopefully these will provide some further help for you.
3-6 months depending on how quickly the dose is titrated up. At my second appointment, after 3 months on Equilibrant, he said I am responding to the treatment. He based this on blood tests and my report to him. I keep a graph/chart of my daily doses, crashes, and pain. He had me adjust my dose down from the full dose of 6 per day, due to increased fatigue at the higher doses...though pain was better. He has patients who do not respond adjust dose or titrate off Equilibrant. He also treats with other antivirals and immune modulators.
I have greatly improved overall since beginning Equilibrant 4 months ago...having longer streaks of no-crash days. But the treatment does exacerbate symptoms when beginning it and each time it is increased. I am at the point of finding the most effective dose for me...one that will still be fighting the viruses and modulating my immune response but also giving me more relief. It is a process! Once we find my optimum dose, Dr. Chia will add other medications, which I'm sure will result in my body further adjusting. He said I can expect to be on this treatment for about 2 years. I'm determined to stick it out since it is the only treatment that has offered me any real medical hope in 20 years.
Dr. Chia and his son are continually researching viruses and medications. Enteroviruses cannot be fully eradicated in the body, but can be controlled by killing off newly replicated viruses and tamping down the activity of the impossible-to-get-to enteroviruses hiding in double strand RNA. This is the goal of Dr. Chia's treatment, at this point, if I understand it correctly.
Have you seen his interview at YouTube ME/CFS Alert channel, episodes 38-41? Very helpful!
Resting...as I press on....
All the best.
Here’s some more info:
I first saw Dr. Chia on June 13, 2012. Next visit was Sept. 19. Next was Jan 14, 2013. It was at this visit Dr. Chia suggested the Equilibrant might not be working on me, which means we tried it for 7 months before this. He said it has 40% success rate.
Because my eczema was acting up, he reduced my dose from 4 per day to 2 per day. Equilibrant risks auto-immune response, and increased eczema could be a sign of this. The Equilibrant ingredient astragalus is known to risk auto-immune problems. I think there were two cases of rheumatoid arthritis following Equilibrant use.
He also suggested I experiment. For example, at some point I might stop Equilibrant and see if I get worse (because I might have improved some and not noticed). He also suggested I experiment with Gene Eden and Amantadine.
I eventually stopped Equilibrant and felt no worse for doing it. I was going to start Amantaine, but had trouble getting the prescription filled. So I started Gene Eden instead. But it’s too soon to tell if Gene Eden is helping. The makers of Gene Eden say to give it two full months to see. But I am able to stand more and walk around more. But only in the evenings. The days at still very rough.
BTW, Gene Eden contains licorice extract. This can have some serious side effects. So be sure to read up on this. And as for Amantadine, it is a prescription drug that has US Food and Drug Administration approved for use as an antiviral and an antiparkinson drug. Be sure to read about its side effects on their website. They can get serious.
I know this is abit old but this link shows dr chia uses epivir.
still unsure how it works, is it for entroviruses or does it work against a few different viruses??
Thanks for the link to my blog. Epivir is an antiretroviral used to treat HIV/AIDS. There is no antiviral specifically for enteroviruses, so Dr. Chia treats with various antivirals. Though Dr. C is continually doing research, I am not certain Dr. Chia is working on an antiviral. His Equilibrant, however, does have antiviral properties. As I mentioned in my blog post, he is hopeful a new Hep C drug will prove effective. He is a founder and board member of the Enterovirus Foundation. Their website will give further information regarding research: http://www.enterovirusfoundation.org/index.shtml
You can also try a Google Site Search
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