Question for Dr. Chia patients

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fireflymd

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To those who have seen Dr. Chia:

1) would you mind sharing what blood tests he orders?

2) must one have an endoscopy and stomach biopsy done as a patient of his?

3) any other treatments recommended aside from Equilibrant and the DHQ supplement?
 
Never Give Up

Never Give Up

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Quick answers:

1. Can't remember specifics, but others will chime in. He looks for the enteroviruses which he believes to be the root cause of ME/CFS.
2. No, it is not required.
3. Yes, his recommendations vary according to which enterovirus the patient has, the patient's response to previous treatments, and a keen sense of knowing which drugs will help and when.

He started my son on Equilibrant, added Inosine many months later, then went to work on POTS, at the 2 year mark, after a great deal of improvement, he added Lamivudine, now at the 3 year mark he's added DHQ. Each of these things has helped my son a great deal, well, not the DHQ, we just ordered it and are waiting for it to arrive. My son tried a lot of different things before this, none of it helped.

Other patients are on all kinds of different treatment paths. It does seem that he usually starts with Equilibrant. I was skeptical about the Equilibrant at first, but we figured what the heck and went for it. About a month in, after the initial worsening had passed, it was clearly improving his cognitive function, energy, and his very severe constipation disappeared.

Trying things, guided by experienced clinicians, is all we've got at this point. My POV is that it is worth trying things that seem like they could help without harming. If you can find even a few things that improve your quality of life and function it's a good thing, and later you might find another thing or two. They all add up. Improvements are good.
 
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Hip

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If you search for the word "Chia" in this roadmap of chronic fatigue syndrome / myalgic encephalomyelitis testing and treatment document, you will find some of answers to your questions.

I don't think you are obliged to get an endoscopic stomach biopsy test; Chia considers that to be the gold standard for detecting a chronic enterovirus infection; but the other option he uses is an enterovirus blood test at ARUP Lab, which has the advantage that it will tell you which particular enteroviruses you have as active chronic infections (the stomach biopsy cannot identify the particular enterovirus you may have).

The ARUP Lab test is a sensitive one, called a neutralization test. In his research, Dr Chia found that this was the only type of blood test that could reliably detect the chronic enterovirus infections found in ME/CFS patients.


Dr John Chia's main treatment is the immunomodulator Equilibrant, or oxymatrine, but he may add to this the antiviral lamivudine (Epivir). Chia says he finds 30% of ME/CFS patients make major improvements on oxymatrine or Equilibrant, and another 20% make minor improvements. Ref: 1


Ref: 1 Note that Epivir is not effective for echovirus 6 and 7. Ref: 1 Dihydroquercetin (DHQ) is another antiviral he has started using recently. Ref: 1

When oxymatrine is not working for a particular patient, Dr Chia's sometimes adds rifampin (also called rifampicin) to boost the effects of oxymatrine. Ref: 1

More info on oxymatrine treatment: Dr Chia: Oxymatrine, Oxymatrine, Autoimmunity, ME/CFS and FM, Quixotic: Equilibrant, Invest in ME 2010 conference transcript, oxymatrine effects, immunomodulators info.

Inosine is another immunomodulator that Chia may employ. Ref: 1


In the past, Dr Chia has tried intravenous interferon to treat ME/CFS, and this put some patients into full remission for 4 to 14 months, but most patients unfortunately tended to relapse, so at present interferon is not a permanent treatment. Ref: 1 There are reasons why you cannot use interferon repeatedly, or on a long term basis (because after some time, the body usually creates antibodies against interferon, which disables interferon's effects). But I understand Dr Chia still uses interferon occasionally. Chia found interferon does not work for ME/CFS linked to coxsackievirus B4. Ref: 1

Dr Chia also uses low-dose naltrexone, which he says only helps a small percentage of ME/CFS patients, but for those it helps, it does so very significantly. Ref: 1 Note that LDN may not work unless you also take vitamin D3.

And in certain circumstances, I believe he might use IVIG (intravenous immunoglobulin), which Chia finds works for 1 out of 3 patients (Ref: Invest in ME 2010 Conference DVD, 24:20). Though Chia said that the problem is that health insurance usually does not cover IVIG.


Dr Chia says the coxsackievirus B (CVB) and echovirus (EV) serotypes that he thinks most commonly cause ME/CFS are:
  • CVB3 and CVB4 first and foremost
  • Then CVB2, EV6, EV7 and EV9
  • And then much less EV11

Dr Chia's website: EVMED
Enterovirus Foundation website: Enterovirus Foundation
 
Last edited:
F

fireflymd

Senior Member
Messages
110
Never Give Up said:
Quick answers:

1. Can't remember specifics, but others will chime in. He looks for the enteroviruses which he believes to be the root cause of ME/CFS.
2. No, it is not required.
3. Yes, his recommendations vary according to which enterovirus the patient has, the patient's response to previous treatments, and a keen sense of knowing which drugs will help and when.

He started my son on Equilibrant, added Inosine many months later, then went to work on POTS, at the 2 year mark, after a great deal of improvement, he added Lamivudine, now at the 3 year mark he's added DHQ. Each of these things has helped my son a great deal, well, not the DHQ, we just ordered it and are waiting for it to arrive. My son tried a lot of different things before this, none of it helped.

Other patients are on all kinds of different treatment paths. It does seem that he usually starts with Equilibrant. I was skeptical about the Equilibrant at first, but we figured what the heck and went for it. About a month in, after the initial worsening had passed, it was clearly improving his cognitive function, energy, and his very severe constipation disappeared.

Trying things, guided by experienced clinicians, is all we've got at this point. My POV is that it is worth trying things that seem like they could help without harming. If you can find even a few things that improve your quality of life and function it's a good thing, and later you might find another thing or two. They all add up. Improvements are good.
Click to expand...

How did your son first present? What lab uses the ARUP blood test, or did he take your son's blood in the office?

Thank you all for your helpful responses.
 
Never Give Up

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fireflymd said:
How did your son first present? What lab uses the ARUP blood test, or did he take your son's blood in the office?

Thank you all for your helpful responses.
Click to expand...
How did he first present to Dr. Chia, or what were his symptoms at the beginning of his illness?

When we first called to schedule the new patient appointment with Dr. Chia he had us send all pertinent medical records. After he reviewed them and agreed to see my son his scheduler called back to make the appointment. Then they mailed us the bloodwork orders along with a list of labs which met his requirements. We easily found one in our area, we are in the same state, I'm sure that helped.
 
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fireflymd

Senior Member
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110
Never Give Up said:
How did he first present to Dr. Chia, or what were his symptoms at the beginning of his illness?

When we first called to schedule the new patient appointment with Dr. Chia he had us send all pertinent medical records. After he reviewed them and agreed to see my son his scheduler called back to make the appointment. Then they mailed us the bloodwork orders along with a list of labs which met his requirements. We easily found one in our area, we are in the same state, I'm sure that helped.
Click to expand...

My apologies, I meant what were his first symptoms? Was there an antecedent illness--was he sick and then the fatigue started? Or did you notice him getting tired more slowly?
 
Never Give Up

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My son's illness did not start with an obvious major flu event from which he never recovered. He just kept getting the flu over and over and over again. We can look back now and see that these "flus" were PEM. We can remember specific athletic exertions preceding the "flus". This started sometime when he was in the 4th grade. He also developed headaches, fatigue and sleep onset insomnia. When summer vacation started every year he just wanted to rest for a good month before spending any time with friends, going to camps, or on trips. Intermittent mild cognitive impairment began in the 7th grade. A sports camp the summer before his 8th grade year left him looking like he was dying- literally. An injury at the start of 8th grade triggered body wide pain, tingling, steadily declining energy, worsening cognitive impairment, orthostatic intolerance, and he continued to keep getting those "flus". At that point he was diagnosed with fibromyalgia. We tried all of the recommended treatments. The meds made him depressed. The exercise clearly made him worse. His school attendance steadily declined with his health. A few weeks into his 9th grade year it was clear that it was no longer in his best interests to physically attend school. We began homeschooling him while searching for effective treatments. He just kept getting worse and worse. My brilliant son would spend all day going over the same paragraph without understanding or retaining any of it. The harder he tried, the worse he got. Eventually he was so cognitively impaired that he could no longer read, do math, tolerate hearing Spanish, which he had been fluent in since the 7th grade, or remember anything about himself or his life. He didn't recognize his own face in the mirror, or his parents faces. He couldn't tolerate noise, light, odors, flavors. He had periods of time when he was unable to walk, speak, feed himself, or hold himself up. I won't bore you with all of the things we tried before realizing that he had ME/CFS. None of it helped him at all. Some of it made him worse. He only began to get better 3 years ago when he saw Dr. Chia, that was 7 years after he started to become ill.
 
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fireflymd

Senior Member
Messages
110
Never Give Up said:
My son's illness did not start with an obvious major flu event from which he never recovered. He just kept getting the flu over and over and over again. We can look back now and see that these "flus" were PEM. We can remember specific athletic exertions preceding the "flus". This started sometime when he was in the 4th grade. He also developed headaches, fatigue and sleep onset insomnia. When summer vacation started every year he just wanted to rest for a good month before spending any time with friends, going to camps, or on trips. Intermittent mild cognitive impairment began in the 7th grade. A sports camp the summer before his 8th grade year left him looking like he was dying- literally. An injury at the start of 8th grade triggered body wide pain, tingling, steadily declining energy, worsening cognitive impairment, orthostatic intolerance, and he continued to keep getting those "flus". At that point he was diagnosed with fibromyalgia. We tried all of the recommended treatments. The meds made him depressed. The exercise clearly made him worse. His school attendance steadily declined with his health. A few weeks into his 9th grade year it was clear that it was no longer in his best interests to physically attend school. We began homeschooling him while searching for effective treatments. He just kept getting worse and worse. My brilliant son would spend all day going over the same paragraph without understanding or retaining any of it. The harder he tried, the worse he got. Eventually he was so cognitively impaired that he could no longer read, do math, tolerate hearing Spanish, which he had been fluent in since the 7th grade, or remember anything about himself or his life. He didn't recognize his own face in the mirror, or his parents faces. He couldn't tolerate noise, light, odors, flavors. He had periods of time when he was unable to walk, speak, feed himself, or hold himself up. I won't bore you with all of the things we tried before realizing that he had ME/CFS. None of it helped him at all. Some of it made him worse. He only began to get better 3 years ago when he saw Dr. Chia, that was 7 years after he started to become ill.
Click to expand...

Oh, I am so sorry for everything you have gone through! Glad to hear you are seeing improvement with Dr. Chia's treatment regimen.

It's also good to know he does not require a stomach biopsy for all his patients.

Thank you for sharing all this information; I hope you continue to see improvement with your son. I like your screen name--never give up!
 
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fireflymd

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110
Never Give Up, does your insurance cover the lamivudine?

If you are paying out of pocket for it, what is the approximate cost per month?
 
Never Give Up

Never Give Up

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No, I don't. I'm sorry. I imagine it would be something like chronic viral infection. The pharmacist thought my son had HIV as that is what it's usually used for.

@halcyon, does your insurance company pay for your Dr. Chia RX's? Do you know what diagnosis code he uses when prescribing for you?
 
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fireflymd

Senior Member
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110
Another question for those who have seen Dr. Chia:

On the website for EVMED, his research organization, he mentions testing "whole blood for enteroviral RNA".

Does he perform this test for all of his patients?
 
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flitza

Senior Member
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He recommends different doses for different subgroups of patients I believe. He started me at 1/8 of a tablet a day, advancing by doubling every 10-14 days as tolerated. Taking twice a day. But on the Equilibrant box the instructions say to 'start with 1/2 tab with water and a small meal for 1-2 weeks. Gradually increase dose by 1/2 to 1tab twice per day every 1-2 weeks. Maximum serving size is 3 tablets twice a day. Maintenance can be 1-6 tablets daily depending on benefit and tolerance'. Now, after about 18months I'm just about at 2 tabs twice a day.
 
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