I’m about to start ampligen in 2 weeks from now.

A bit about myself: I first got sick in San Francisco.  I have a very classic case of ME/CFIDS, with severe postexertional malaise, orthostatic intolerance, sleep disorders, gut inflammation and sensitivities, you name it.  I don’t have any fibro.  My onset was a very severe case of mono.  I’ve been through the ringer with lyme disease, and even the top notch LLMDs tell me I have a primarily viral case.  I tested positive for XMRV, but I haven’t tried antiretroviral drugs.

This blog may not sit well with many people who are hoping for documentation of a controlled experiment with ampligen, because I am a strong believer in the link between sensitivities to biotoxins and ME/CFIDS, and I believe that avoiding biotoxins to the best of my abilities during my trial with ampligen will optimize my results with the drug.  Similarly, this blog may not sit well with extreme mold avoiders or believers in the location effect, because I don’t believe avoidance of biotoxins will lead to substantial recovery for me.  I am somewhere in the middle.

Let me explain: in the last few years, I’ve experimented abundantly with avoidance of biotoxins (it’s worth noting I also avoid chemicals to the best of my abilities).  During these experiments, I’ve found that certain core symptoms such as gut dysfunction, headaches, blurry vision, ability to breathe deeply, chest pain, OI, energy etc improve when I’m either camping or in a trailer in certain locations.  Certain medications that I cannot tolerate in the big city, such as hardcore antibiotics, I tolerate with ease out there. However, neither my PEM or OI, 2 of my top 3 symptoms, go away, no matter how long I’m out there.

My guess is that viral damage from a retrovirus and secondary infections have done too much damage to organs, especially the heart and adrenal glands, that the dampening-down of inflammation from moving to the middle of nowhere will not help.  However, I believe the lowering of inflammation does improve the chance that an antiviral medication will help.

So why ampligen and not valcyte, gcmaf, antiretrovirals?

Valcyte? Again, I believe I have a retrovirus.  Even though I have elevated antibodies to EBV, HHV-6, coxsackie, and other virii, they are only slightly elevated which takes me out of the Lerner cohort that responds optimally to anti-herpes-virals.

Antiretrovirals?  Because I don’t believe the ones that have demonstrated in vitro activity against XMRV (AZT, tenofovir, raltegravir) are effective enough to warrant their toxicity and a protease inhibitor at the very least is missing.

GcMAF? Seems to be work OK but several patients have relapsed on it and as immune modulators go, ampligen definitely has the more established track record.  In addition, ampligen has demonstrated clinical efficacy against both HIV and HHV-6, and it kills XMRV in vitro.  I believe that whatever treatment I take for the viral component of ME/CFIDS needs to work on the NK cells, and ampligen has demonstrated NK cell increasing properties.  Going back to the biotoxin sensitivities, I also believe ampligen lowers systemic inflammation (anecdotally, I think this is why patients in incline village, which Erik Johnson and other extreme mold avoiders have said is chock-full of noxious biotoxins, do well on ampligen while living there.)  In comparison, some patients on Phoenix Rising have documented increased c4a while on GcMAF, which would imply that GcMAF in its current form is not a great medication for lowering systemic inflammation.

With all this said, I’m logically thinking I may be a good responder to ampligen but I’m hardly excited to start.  Mostly because, like so many of you, I’ve been excited and promptly disappointed by so many trials with experimental treatments.  But at least I know I’ve thought long and hard about this, and IMHO the logic behind matching my body’s profile with this drug is sound.  I know it’s not the end-all be-all, but I”m hoping that by combining ampligen with supportive modalities such as biotoxin avoidance, I will get the most out of the drug and maybe even surprise myself.  Another possibility is that the drug improves my quality of life just enough so I can start working and supporting myself until a better treatment comes along.  Anywhere between those two scenarios would be great, really.

As for finances, needless to say I know I am fortunate to be able to take this drug which will cost anywhere between $7200-$14400 a year, depending on the dose, before administrative costs.  I’m praying that medicare will cover some if not all of the administrative costs.   Of course, I’m hoping that those of us fortunate enough to get access to the drug and respond well will pay it forward by 1) helping HEB expedite FDA approval and 2) relaying our positive experiences via blogs to keep up the hope that there is a drug in existence that can help, even if it’s out of most patients’ reach for now.

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About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

3 responses »

  1. Lisa Petrison says:

    As an extreme avoider and believer in the locations effect myself, I think this is terrific.

    It is true that some people pursuing extreme avoidance have gone from severely ill (e.g. almost housebound) with ME/CFS to “almost well” literally overnight. But for others, it takes a lot more time.

    Erik himself (below) said that it took him six months to notice a major effect.

    I’m not sure what the difference is. Maybe it’s related to just how toxic people’s bodies are already, or how poorly their detoxification systems are working, or which infections they have, or how active those infections are. Or all of the above.

    My own experiences and observations are that although extreme avoidance can be startlingly effective all by itself, its real power is in allowing people to tolerate treatments that they cannot when they’re getting exposures.

    For instance, Erik says that if it hadn’t been for exercise (sweating out the toxins), he likely would still be a semi-invalid. In civilization, he was unable to exercise at all due to his severe post-exertional exhaustion. When clear, he was able to exercise increasingly vigorously (eventually climbing the tallest mountain in the U.S.) without negative consequence.

    When I was living in my moldy house, even a small amount of mild antiviral (Famvir) made me deathly sick. Pursuing avoidance in an excellent location, I was able to tolerate a full dose of Valcyte (900 mg) plus a full dose of Famvir (1000 mg) with just some mild tiredness. And I benefited substantially from those drugs, with my reactivity going down and my cognitive functioning improving.

    The same thing happened with antibiotics and cholestyramine (an intestinal binder used for detoxification).

    Ampligen, I think, may be even more appropriate than antivirals or antibiotics. My understanding is that it is an immune shifter, which decreases inflammation a bit just on its own. If this is the case, it theoretically should allow people to pursue detoxification and pathogen killing (e.g. using antibiotics) in a place that is a bit less pristine — a welcome thing in a world that (in the experience of some of us) is becoming more and more toxic.

    So I’m really excited about this trial and can’t wait to see how it goes!

    Best,

    Lisa Petrison

    lisapetrison at yahoo

    *

    > Is there a usual amount of time a person would spend camping in the desert in order to be well?

    It varies, and depends on a lot of factors which seem to be subject to change without warning.

    It took me about six months to really be certain that this was no fluke and was truly an intervention that was controllable.

    Basically, I’m going at this blind.

    I really don’t know what avoidance can do, who it can help, how long it should take, or much of anything else.

    -Erik (2009)

  2. lbalombini says:

    Thanks for taking the time to write about your drug trial. Many of us are in similar paths. If we cannot get help from Drs & researchers..we must help each other.. your story is similar to my sons. we’ll keep fingers crossed ..good luck.

  3. Lilly says:

    Good luck! Your reasoning sounds about like mine would be if I had the money to do Ampligen. Hoping it will be FDA approved soon. Thanks for sharing your journey.

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