The Pills Not Taken

Photo by Laura Molnar. Isn't this exactly what you picture when you read the poem?

If you’re not familiar with the Robert Frost poem, here you go.

One of the things that keeps me up at night (who am I kidding; everything keeps me up at night, from sugar to licorice to antifungal cream) is worrying about my treatment plan.
As you might expect for an illness that has long had no known etiology, there are a great many treatment approaches. You can take a laundry list of supplements, prescriptions, and custom gels from Cheney, to different laundry lists of supplements and prescriptions from many others, to years-long courses of prescription antiviral medications from Lerner. Nobody has a cure yet, and how do you know what’ll benefit you most? We picked Cheney because he was within geographic reach and of stellar reputation, but I still worry about whether I’m on the best possible treatment for me.

Of the choices listed above, it’s that last set – the antiviral prescription medications – that are usually the source of my worry. While a Plain Old Virus is not likely the cause of the illness, there are a number of viruses that are known to be reactivated in people with it. And thus, some people do better with antiviral therapy. Cheney has me on a few supplements – artesunate, wormwood, and inosine – that have antiviral effects. But I worry that maybe I should be using the big guns. I know a ME/CFS blogger who’s doing better on antivirals – and I wonder whether I would be doing better on them too.

Secondly, Cheney, at this point, will not prescribe antiretrovirals. He believes that they’re dangerous for people as sick as his patients, and that long-term treatment with them will be problematic for us. But again, I know one ME/CFS blogger who’s doing markedly better on them, seems to be tolerating them fine, and claims that before treatment she was a KPS 40. I’m a KPS 40. She’s now flying back and forth across the country as the new director of clinical services for the WPI. I, you might have noticed, am not flying anywhere.

I also worry that as time goes on, the damage the disease is wreaking will be more and more intractable, and the benefit I could get from treatment will be less and less. But I keep trying to reassure myself (and Chimp does too) that there are a lot of irons in the fire, and there’s one particular great hope on the horizon: GcMAF.

Kenny de Merlier is using it with his ME/CFS patients in Belgium, and apparently having very good results, with almost all patients responding positively. There are some hoops to jump to get me on it. We will have to pay for the phlebotomists to come out and do blood draws repeatedly. The pre-tests will require fourteen tubes, which is challenging, because I can only get three or four out before I start to get shaky and faint. There will be routine blood tests once a month while I’m on it, and a repeat of the pre-tests at the end of 24 weeks. Before I can start it, though, I have to go to Asheville for a baseline appointment with Cheney, which, as you can probably imagine, is pretty taxing and several thousand dollars to boot, with little of it covered by insurance. Then we will order the GcMAF from Belgium, and a 24-week supply, which is the first course of treatment, will cost about $3,000. Then at the end of the 24 weeks, I will have to go to Asheville to see Dr. Cheney again for a follow-up visit. You probably see now where all my disability income – and more – is going.

But great things seem to be happening in Belgium, and this certainly seems like something that could help. It won’t cure me, but it might give me better function. And to go from bedridden to merely housebound would be a dream come true – it’s something I never thought would happen for me.

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8 Responses to The Pills Not Taken

  1. susan says:

    Maybe you could talk to Cheney about your concerns with the different approaches
    Although you probably already have. Hugs to you

    • Jocelyn says:

      Good thought. I haven’t yet, but that’s probably too much to do over email, knowing his tendency to long-winded replies. Will save that discussion for our next office visit.

  2. Sue says:

    You might want to take a look at this spreadsheet to see how some people are responding to gcmaf:
    https://spreadsheets.google.com/ccc?authkey=CIH8jqcC&hl=en&key=tZNXEKNWzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0

    • Jocelyn says:

      Wow, thanks for that, Sue. It is a bit discouraging to see fewer people responding there than what Cheney has related about de Merlier’s experience, but I suppose all there is to do is to try it.

  3. I hope it all goes well for you. Em xxx

  4. Zach says:

    Took some time tonight to catch up here. I certainly hope, if this is primarily an endogenous retrovirus, that we can find the right signal to tighten the epigenetic structure and shut down primary production (and there are chemicals which do this, though they don’t target specific sections). That would most definitely do the trick.

    Aside from that, sending well-wishes that your condition stabilizes fully and perhaps begins to improve.

  5. Tink says:

    My husbands employer offered us a huge discount on DNA profiling and of course we jumped at the chance. We could close from a couple of companies and we decided to go with 23andme because it is run by mrs. Google and I have a huge respect for all the work that she does and had the feeling our data would be safe there.
    DNA profiling tell you a lot about yourself and I’m convinced it’s the future in medicine. Medications and treatments tailored on your genes sets and DNA.

    As you know having a certain gene combination makes you a high responder to GCmaf dr deMeirleir’s research proofs that. So I immediately looked up this certain gene combination to find out if I would be a high responder or not and to my surprise I do have that gene mutation. It means I would be an excellent candidate for GCmaf.

    However things are not that simple. I approached dr. Enlander who is doing a trial with dr. deMeirler and he of course insist I move to New York for the time being.(I live in Oregon). Like you I can’t fly, so no WPI vistis for me or dr.Montoya’s Stanford. We thought long and hard and decided to buy an RV so we will have a house on wheels and can go to wherever I need to go in my own time. Luckily my husbands employer is flexible and he can work from the road.

    Have you considered Ampligen? It’s something I’m now trying to choose between Ampligen or GCmaf . Ampligen would mean dr.Peterson for me or dr. Lap in NC.

    Looking forward reading about your GCmaf adventures.

  6. Pingback: Happy Blogiversary to Me | No Poster Girl

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