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

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

Sunday, July 8, 2012

Summary of Latest Appointment With Dr. C

On Thursday, I attended my second appointment with Dr. C, who is one of the more well-respected ME/CFS doctors and researchers on the West Coast.  (For a recap of my first visit to Dr. C, click here.) This appointment lasted 49 minutes from the time Dr. C entered the exam room - impressive.

Equilibrant

We started off by discussing how I'd been faring since the start of a course of Equilibrant two months ago.  I explained that, while May was statistically my best month since I started keeping records in September, I seemed to return to average in June.  I explained that, in June, I ran out of ImmunoStim because of a temporary shortage, and that this could explain the dip.  In other words, I wondered if the combination of the two herbal immune modulators was responsible for my improvement in May.  

Dr. C seemed skeptical, citing a lack of studies showing effectiveness of the herbs used in ImmunoStim -  mostly maitake and beta glucan.  But he said it was possible that the two were having a synergistic effect.  We agreed that the only way I'd be able to draw a conclusion was is if I improved again after resuming the ImmunoStim.  (Incidentally, I received a new shipment of ImmunoStim last Wednesday and am, again, feeling better on a combination of the two, although it's only been a few days).

One a side note: Even though June was an average month, the Equilibrant seems to have flattened out the peaks an valleys.  So while my highs weren't as high, my crashes weren't as low.  I'm not sure if that's a good thing or not. 

Inosine

Dr. C said that when people don't respond to the Equilibrant alone, he recommends that they add Inosine.  Inosine is a precursor of ATP, and is commonly advertised to athletes to improve their workouts.  It is available over the counter, and in fact, I've since ordered 90 tabs from Amazon for about $10. 

He said he hasn't been recommending the inosine for as long as the Equilibrant, so his sample size is smaller (50 compared to over 800).  However, of the 50 patients to whom he has recommended Inosine + Equilibrant, 40% have shown substantial improvement.  

Just like with Equilibrant, one will know if it's working if he/she gets a flu-like reaction for the first 2 or 3 days after taking it.  (That's exactly what I experienced every time I increased my dosage of Equilibrant, until I reached a plateau at 5 pills a day.)  

Unlike Equilibrant, however, one can develop a tolerance to inosine -- much like one develops a tolerance for alcohol.  For this reason, Dr. C gives patients the option of "pulsing" their doses.  For more severely sick patients, typically the pulsing does not help - so he recommends a constant daily dose.  But for moderately ill patients like myself, he recommends taking two inosine tabs, twice a day (4 total), for a week and then taking three weeks off.

Incidentally, he mentioned that Dr. Cheney also recommends pulsing inosine, but on a different schedule (2 days on, 3 days off).

Apparently, a possible side effect of inosine is an increase in uric acid, so a doctor should monitor one's levels.  

Amantadine

Dr. C said that, by the time of my next appointment in two months, he'll know whether the drug Amantadine is going to be the breakthrough that he hopes it will be.  Amantadine is a drug for Influenza and Parkinson's disease, but there is some suggestion that it may be effective for ME/CFS when combined with Equilibrant.  

[We're getting into an area now where Dr. C lost me a little, but I'll do my best to explain what I thought he said.  This part also assumes that Dr. C's enterovirus theory of ME/CFS is correct.]  

The enterovirus has a protective mechanism where it "hides" when it's not replicating -- I believe, inside of a shell(?) - although this is unclear.  When the virus replicates, it releases new viruses outside of the shell, "like a dandelion releasing seeds into the wind."  So the Equilibrant helps the immune system kill the new viruses before they attach, but it still can't get inside the shell and kill the established viruses.  

But, it is thought that Amantadine may be able to get inside the shell and cut the RNA strand enterovirus off where it attaches.  If I understood Dr. C correctly, this could be an important breakthrough.

Personally, I take an "I'll believe it when I see it" view of this information.  It seems we're often hearing about new potential breakthroughs, none of which have panned out so far.  But it's nice to know that there's hope!

The Work Issue

For those that read my blog regularly, you know I've been struggling lately with the issue of what to do about work.  Should I continue to work full time?  Cut back to part-time?  Or quit completely?  I've received some conflicting (but well intentioned and always appreciated) advice from others on this issue.  For instance, my other CFS specialist, Dr. W, said he saw no reason to stop working.  But other PWMEs (who I probably trust more than Dr. W) have warned that I could be squandering my best chance to recover.  

Dr. C said that in his experience, it doesn't matter whether one works or not.  He said that the only predictor of the progression of one's ME/CFS that has ever been shown to be reliable is the severity of the initial infection.  If one's initial infection is 10M viruses, and the body's initial immune response kills 60% of them, that leaves 4M viruses left (which apparently is a lot.)  But if the initial infection is only 1M viruses, and the immune system kills 60%, the remaining 400,000 can be somewhat controlled by the body's weakened immune system thereafter.  

Dr. C also said he has had patients go both routes -- quitting work and not.  Of course, many of them do not have a choice because they're simply too sick to work in any capacity.  But he said that for those who did have a choice, it hasn't seemed to have made a difference in their disease progression.  Those who stopped working, hoping to recover, did not recover.  And those who continue to work usually don't decline further because of the work.

However, he did caution that if I felt myself getting worse because of work then I should stop or cut back.  So, this one little hesitation on his part -- this hedging -- leaves the question open.  I'm going to continue to consider the problem and gather others' input.  And of course, most importantly, I'll continue to monitor and track my own health closely.  

A Note about Cytokine Profiles

I asked Dr. C if there was any blood test that would help track whether the Equilibrant was, in fact, shifting my immune system toward Th1.  He said that there wasn't anything reliable, and that we have to stick to patient self-reporting of symptoms.  During this discussion, he mentioned that Dr. Klimas runs cytokine profiles, but that he didn't think these were helpful.  First, let me be clear: Dr. C is friends with Dr. Klimas and obviously has an enormous amount of respect for her based on the way he talks about her.  But on this issue, they respectfully disagree.  Dr. C feels that cytokine profiles will always be wildly different, even among PWME's, because of the different etiologies of each of our conditions, and the way the viruses attack different parts of the body.  For this reason, he doesn't believe that cytokine profiles are useful.  

I have no opinion on this because I haven't looked into it myself, but I thought the difference of opinion between these two researchers was worth noting.  

Prognosis

Just as I did with Dr. W, I tried to pin down Dr. C as to exactly what he thought my chances of achieving full remission were.  He confirmed what I'd basically already worked out for myself: with the current state of medical knowledge, "very few" people go into remission.  In reality, (and I'm paraphrasing) people achieve some semblance of a life by a combination of modest improvements through treatment, and learning to adapt to new limitations.  

This doesn't mean I'm giving up hope.  I think it's possible to be both realistic and hopeful at the same time, which is what I've been striving for all along.

[9/12/12 update: for an updated post after my next visit to Dr. C, click here]


9 comments:

  1. Just my opinion, but half days with a late morning start would be good to try for a while for work. I am enjoying reading your medication trials. We haven't been offered anything of a prescriptive nature as yet, but am getting ideas on what to ask for :)

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    1. Thanks Myst. Re work: that is one of the options I am considering. Appreciate the input.

      The prescriptions I'm taking are Famvir (antiviral) and a temporary course of Nystatin (for candida). Also T3 thyroid for body temperature regulation. I can't honestly say that the Famvir has helped at all, but it's supposed to be a long term course, so maybe I'll see results in the future. The Nystatin and T3 have both definitely helped, but only with peripheral issues.

      So far, I think I've had the best luck with non-prescription supplements.

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  2. Keep up the great work. This info on what treatments you're trying and how they work is great stuff, much appreciated.

    I just tweeted out this article, so hopefully you get a few more page views from this (no promises though).

    I hope you beat this thing. I haven't yet. But on the upside, as a result of my CFS I'm very open to alternative treatments, which I've used effectively for my health issues and others.

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    1. Thanks Greyson, and I appreciate the tweet too. I hope you beat this thing as well.

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  3. Patrick-One item that helped me decide on work was how I felt at the end of the work day, and what I had left in the tank for my family. Coming home dead tired, and being a zombie when I was at home was not fair to them. That was what told me to cut back my hours from 45 to 35. I still feel part of the team at work, and have wednesday mornings and friday afternoons off. It breaks up the week nicely. Again, the timing of my feeling a bit better was in combination of the reduction in work and introducing some supplements. To me it boiled down to how I could handle family time with a certain work schedule. Just my input.

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    1. I think you hit the nail on the head, Bret. Family really has to be the most important factor in all this. One of my biggest worries is that I'm not going to be able to be the "fun dad" that imagined I would be to my daughter. And my wife needs to be a part of the decision too.

      Thanks for your input. Much appreciated.

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  4. Hey Patrick, just had a quick suggestion.

    It'd be cool to get an automated email whenever someone adds a comment to a post that I commented on. Otherwise, I forget which post I commented on don't check back in to see if anyone replied to my comment.

    I know forums allow this type of functionality, but not sure if blogspot comments have anything like this built in.

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    1. Great idea, Greyson. I just assumed that was an option for people when they left a comment. I'm a little surprised it's not. I'll look into it and see if I can change any settings so that you'll have the option of getting an email when someone responds.

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  5. So, I wonder if I should have him take Inosine along with the Equilibrant right away, is there any reason not to? I know you aren't a doctor, but you are the closest thing I have to an expert. :)
    BTW -- thank you for discussing the Th1-Th2 imbalance -- believe it or not, even with all our research we hadn't heard about it. I have had him on an anti-inflammatory diet that included lots of green tea and having a shot of OJ with a tsp of turmeric and black pepper three times a day. I thought I was doing something super healthy!

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