Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, December 17, 2013

Some pretty big news from Dr. C

I had my latest appointment with Dr. C last Friday.  One of the great things about Dr. C is that he never limits our discussion to my personal struggle with ME/CFS.  He always broadens the discussion into the latest developments in ME/CFS research.  I never have to initiate this broader discussionhe brings it up on his own.  Since I assume he does this with all patients, one wonders how he doesn't drive himself insane having the same conversation with patients after patient all day long.  I can only assume that he recognizes how starved we as patients are for the latest research news and takes pity on us.  He never makes these discussions feel rushedit's always as if we're sitting in a coffee shop chatting as friends.

                                                                     Dr. Lipkin's Findings

The discussion started with the major findings of Dr. Ian Lipkin that made headlines back in September. (Here's a link to a Phoenix Rising article about those findings.)  Dr. C always has always heaped effusive priase for the work of his fellow ME/CFS researchers, as he did with Dr. Lipkin.  Dr. C pointed out, however, that many people have misunderstood the significance of Lipkin's research, believing that a viral cause has all but been ruled out.  To put Lipkin's research into better context, Dr. C pointed out that not only was Lipkin's virus hunt limited to the blood, it was limited to blood plasma.  Dr. Lipkin did not look for viruses in the white blood cells of ME/CFS patients, which is a better place to look for possible ME/CFS-causing viruses in the blood, according to Dr. C.

When Dr. C did his own virus hunt in the blood of ME/CFS patients years ago, he found enteroviruses in approximately 60% of patients' white blood cells, as opposed to only 2 in 20 in the plasma.  Admittedly, he used a small sample size.

As many people know, Dr. C firmly believes that the place to hunt for any viral cause of ME/CFS (which he postulates is a enteroviruses) is in the body's tissues.  Dr. C has always focused on biopsies of the gut, partly because the gut is the easiest internal organ from which to obtain a biopsy.

Getting back to Dr. Lipkin for a moment, Dr. C noted that Lipkin's next big endeavor is to look for evidence of viral infection in the stool samples of ME/CFS  patients.  According to Dr. C however, this is not likely to be fruitful.  If looking for viruses in the blood is like looking for a needle in a haystack, looking for viruses in stool samples is like looking for a needle in a haystack that is 10x as large.  (He said all this while heaping praise on Dr. Lipkin, so while it is clear that while Dr. C prefers to pursue other theories, the has the utmost respect for Dr. Lipkin.)  At the same time he said, "I certainly have a number of questions for him [Dr. Lipkin] at the March conference"referring to the upcoming IACSF/ME conference in San Francisco.

Finally, Dr. C also mentioned that Lipkin's next big treatment experiment will be with cytokine blocking drugs, noting that some of Lipkin's recent research has confirmed the "cytokine storm" that many of us believe is a cause of our rampant inflammation.  Without sounding too contrarian, Dr. C again stated that he would be hesitant about recommending cytokine treatment to any of his other patients until further research.

He gave the example of one of his patients who had terrible neck stiffness due to a cytokine storm concentrated in that area.  This patient was treated with an experimental cytokine blocking medicine by another doctor, and two months into the treatment the patient began to have terrible neurological problems, including major involuntary spasms all over his body and the gradual loss of all speech. The patient can only speak now through a computer, ala Steven Hawking.  Dr. C is now attempting to help recover the young man's speech through IVIG treatment.  I asked if Dr. C thought these symptoms were side affects of the cytokine blocking drug and he said, "we think so."

New Antiviral Drugs

Dr. C has long discussed the possibly that certain antiviral drugs "in the pipeline" would help treat ME/CFS.  He states that any new antiviral drug gives hope to our community.  In January, 2014, a drug company is expected to launch a new Hepatitis C antiviral drug that Dr. C plans to test on ME/CFS patients. The drug apparently costs, not joke, about $30,000 per month!  No word on how or by whom this experiment would be paid for.

Later in 2014, two other drug companies are expected to drop competing Hep C antivirals.  This should introduce competition in to the market and hopefully give ME/CFS patients two additional chances to find an effective antiviral.  

Other than those three impending Hep C drugs, Dr. C said there is no other "chatter" about additional antiviral drugs in the pipeline. But he noted that this lack of chatter may be because drug companies like to keep such projects secret for fear of being ripped off and beat to the marketplace by competitors.  

                                                                Dr. C's New Findings

Not to bury the lead but.... Dr. C says that he obtained tissues samples from a recent patient of his who, tragically, committed suicide.  The family was kind enough to donate the body to Dr. C's research. (Side note: I'm trying to walk a fine line here because Dr. C states that his findings will be announced at the March IACFS conference and not before then, so I don't want to steal his thunder).  All I can reveal at this point is that Dr. C found a raging enterovirus infection all throughout a major, very critical organ from this deceased patient's body.  (I'm sorry, I can't reveal the organ).  Dr. C is certain that it is the same enterovirus he has been finding in the linings of the guts of his patients for years.  (Although, he noted that this enterovirus was detected by the protein that it produces, not directly by sequencing the virus, which is very expensive.  When and if he ever obtains the funds, he would like to sequence the virus from his organ sample and conclusively prove that it is the same enterovirus from the gut.)

My Revised Game Plan

To quickly summarize my past work with Dr. Chia: I had success and continue to have success with his oxymatrine treatment called by the brand name Equilibrant.  This helped me improve by about 10%.  But none of Dr. C's additional pharmacological treatments did anything for me, and some had bad side affects.  I've tried Rifampin, Epivir, Amantadine, and inosine among others.

After some discussion, we decided to revisit some of the failed treatments to confirm that the side affects I thought I experienced were truly from the drugs and not from, say, a crash.  So the plan is to, in addition to continuing Equilibrant, take both inosine and Epivir together in combination.  We'll see if that makes a difference this time.

Possible Sad News

Toward the end of the appointment, in the context of another discussion, Dr. C stated that he would like to move on to other areas of research besides ME/CFS.  Then he asked rhetorically, "but then who would take care of my patients? You see, for diseases like HIV where the treatment routine is so well established and understood, a nurse practitioner can be a patient's sole medical provider.  But with this disease, my patients need me to treat them individually."  So it was unclear if Dr. C would actually move on from ME/CFS, or if he was simply expressing the desire to.  

I told him that we need him and that he is practically a celebrity in certain circles and why give that up? I'm not sure it helped... 

10 comments:

  1. I have a friend with CFIDS who is donating her body to science. What a noble thing to do!

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    1. Good for her Beatrice. That's really generous of her.

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  2. Hi, I would love to pick your brain on a couple of quick Dr C-related things, if you had a moment. I'm not able to get to him, but Equilibrant has been my biggest help so far and I would love some insight on his approach.

    Did Dr. C. have you alter your dose of Equilibrant at all when you started on the inosine, or check any kind of bloodwork? I'm navigating all of this partly on my own (doctors are mostly supportive, but not well informed), and am hoping to add Immunovir to my regime soon. I would love to know if there are any special measures I should ideally be taking.

    Do you know what he advises in terms of how to know when to increase the dose or leave it stable? I'm at 3 and a quarter pills per day right now, and have been taking it slow. The ill-feeling start-up effects tend to fade down within a couple of weeks after increasing my dose. I'm feeling energized, but almost a little bit wired (which is a great change, but I'm not sure if that's a sign that I've maxed out what it can do for me or if I should keep pushing it). I'm okay going with my own gut on when to increase, but I would love to know if you had any insight on Dr. C's general approach.

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    1. Hi Curiosity - I've read quite a few message board threads, articles and blogs by others reporting their experiences with Dr. Chia and it seems he recommends different dosages of Equilibrant for different people at different times. I don't know what he bases this on. Severity of illness? Weight? Sex? Who knows?

      As for me personally, he did not have me alter my dose of E when I started the inosine.

      Based on what I've read from his other patients, it seems Dr. C's general approach is to let people keep going up (to a maximum of 6 tabs/day) as long as each increased dose results in an initial start-up effect followed by overall improvement. When the body's reaction becomes too intense, he tells people to scale it back. But again, this is all just my second hand impressions from other patients. Sorry I can't be more helpful. Best of luck.

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  3. I/m also a patient of Dr Chia's and I have never EVER heard him say a thing about Retroviruses, Not all RNA viruses are retroviruses,
    Enteroviruses are a double stranded RNA group of viruses and are what Dr, Chia has been finding in the tissues of his patients as shown in his paper published in 2007.

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    1. Hi Siobhan M, nice to meet you too. You are of course correct that enteroviruses are double strand RNA viruses, while retroviruses are single strand. I've corrected that now. I will make sure to never EVER transpose those two again.

      EVER.

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    2. Nice to meet you too :)

      Yeah that could easily end up being a very sticky transposition.
      I've been very happy to read that Dr, Chia is helping you some

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  4. Hi Patrick,
    This is the first time i have seen your blog. Im a long long long time ME patient, good to meet you :)
    Dr. Susan Levine was my doctor when I started getting treated in 1994. I had mild symptoms from when I was very young, the condition didnt start showing its nasty side until 1990, 1993, I finally find out what the "mystery" disease was when I went to my family doctor and asked him to do bloodwork to see. I didnt hear about Dr. Chia until the last few
    years, he sounds like an awesome doctor. Thanks for posting the update. I am on twitter and I will post
    the link for your blog!

    Anne :)

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    1. Hi Anne. So nice to meet you and thanks for sharing your experience. I always enjoying hearing about the journeys of other patients, even in brief. See you around. :)

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