With the Phase III trials looming, the results of Dr. Pridgen’s phase II clinical trials on his antiviral approach to fibromyalgia have been released.His next step – finding a way through the “valley of death” where many drug possibilities go to die – and launch the Phase III trials needed for the FDA drug approval. Find out what Dr. Pridgen thought of the last trial and how he’s getting ready for the next in a Simmaron Research Foundation sponsored blog…
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I’d like to put out a word of caution and food for thought for anyone who suffers from fatigue, POTS, brain fog and ANS symptoms.
It’s been found (I think by Klimas et al) that we may have a more permeable blood/brain barrier and skin barrier and gut mucosal barrier. The other cohort which has a more permeable blood/brain barrier are those over 65 years old. The elderly now have an anticholinergic drug orotocol. What that means is that anti-cholinergic drugs are found to pass through their more permeable blood/brain barrier and CAUSE Alzheimers.
What is an anti-cholinergic drug. Most drugs with that start with the word “anti” like anti-viral, antihistamine (1st generation like Benadryl, 2nd generation like Reactine seem fine), etc. There are also drugs with anti-cholinergic effects like Warfarin. While these drugs may work for their intended purpose, they can at the same time penetrate our various barriers and cause long term irreversible damage over time. It’s my opinion that many CFS/ME patients are bedridden due to anti-virals whereas they may have had some quality of life if they had never been given antivirals or antidepressants. I’m thinking of Whitney Dafoe, for example. He went from bad to worse after antivirals and chemotherapy.
Hello, Aquafit,
In speaking of an anticholinergic, which drug are you referring to? The Famvir antiviral or the Celebrex generally used for osteoarthritis? Anticholinergics are generally agents which “dry up” secretions. The Famvir and Celebrex each disable EBV and perhaps other viruses (not sure) through different cellular entryways. I would think that most MD’s would order this combo for FM patients and likely ME/CFS people as well. Thanks and I look forward to hearing from you. Marcie
You know what? I’m in excruciating pain every day of my life and I just don’t care. I’m sure the meds I take to function will shorten the quantity if my days. I accept that. It’s not ideal, no. Just as it’s not ideal that I’ve taken anticholergics to sleep when the other option was not sleeping. But what matters to me and many other fibro patients is that our quality of life has been greatly greatly diminished. We don’t need you wanking on about anti cholinergics or blood brain barriers. Save your mansplain for someone who’s not in aging.
Very interesting comment. After being diagnosed with ME/CFS I tested positive for HSV2 virus and started Famciclovir antivirals. After 3 months the clinic asked me to fill in a survey as part of a study of the treatment. I was worse than when I started. They increased the dose of Famciclovir. After 4 months I was no longer able to work and became bedridden. After 5 months I was unable to look after myself and took myself off the antivirals. I informed the clinic but strangely at the 6 month appointment while still bedridden I was no longer asked to fill in a survey as part of the study. That didn’t seem right.
Cort, I think this would be a good opportunity for a poll on Healthrising to ask people if they have improved or got worse after anti-viral treatment. I think it is important that people are made aware of the risks that treatment can bring.
I believe that the work by Ron Davis, Alan Light, the Australians, and others is so important. We need real science to understand the mechanisms of this disease and not just guesswork.
Wow…I know of some people have done well on antivirals but that is a nightmarish story, and I agree that it would be good to do a poll on that and other treatments.
Interesting, aquafit. Thanks for sharing that info.
Please correct me if my observation is off base.
So, if HSV-1 is the primary culprit, why doesn’t this drug combo lead to a remarkable improvement in many patients rather than just a “statistically significant” improvement in some. Is it possible that the major dysfunction that is going on in our bodies allows for some of these ever present viruses to activate more often in us than the general population?
So many millions of dollars will be happily put forth for the expectation of a successful trial that will reap many more millions of dollars for Pridgen and associates, Big Pharma, and of course Wall Street financiers. The patients (some at least) at best will have some relief from the effects of HSV-1 but mostly they will remain very ill. And of course this drug combo will have to be taken forever as I haven’t read of any expectations of this virus being wiped out. So a new drug combo to be patented (big $’s) for a chronic condition = major potential windfall for many, many years (stand back Lipitor). I can understand the enthusiasm from the invested parties. Forgive me if my enthusiasm is more subdued. Is there anything about this study that has any real chance of understanding the basic cause of our illness? Conniving business schemes to extract more money from a group long denied any serious effort for real research and answers. Somebody explain to me why my cynicism is out of place.
Speaking purely hypothetically, fibromyalgia could simply be a nervous system inflammatory condition that is instigated by more than one potential causative factor. This could explain why there are multiple distinct categories of origin-stories (accident / illness / trauma / just-snuck-up-on-me) and why all of the existing medications seem to help some people much more than others. It would ultimately mean that any drug that attempted to address the root causes (rather than just symptoms) probably isn’t going to work for everybody.
We need more research — LOTS more research. But nobody does fundraisers for us. Nobody marches for us. NIH can’t even be bothered to allot a reasonable amount of funding for the condition. Lives are being destroyed, and nobody really gives a damn. :/
It’s just so strange Kate. I will say that the fibromyalgia community is HUGE. It dwarfs that of ME/CFS and is much, much, (much) more active on social media than the ME/CFS community. Why the advocacy hasn’t appeared I don’t know but when it does FM will be a powerful force.
Dear Greg,
I’m not sure who said that HSV1 is the major culprit as I’ve never read that. There are many other viruses as well the ones we have yet to uncover which may make for some of the different outcomes. EBV, CMV, HHV6a (see HHV6 Foundation for great info).
I had a lowgrade fever every day for 20 years and upon seeing a very small study done by Stanford’s Jose Montoya about Valcyte (valgancyclovir) I had an MD order it for me at the same dosing of 450mg twice daily and my fever of 99.9-100.5 was gone within days and my overall quality of life improved consequently. I still have ME/CFS but seem to have fewer severe crashes.
Valcyte was developed during the HIV era when patients would get CMV in their eyes so it is Rx’d as “off the shelf” meaning for another use. I’ll add that I know that it’s the Valcyte working as twice during hospitalizations I didn’t have it available so went without for 4 days and each time the fever reappeared until I had taken several days of Valcyte again so I know that’s what is keeping the fever away. Marcie
Is valcytr and Valtrex the same
Valcyte is a much stronger drug.
It’s not out of place at all. Big pharma and the FDA aka our government out profits over people and continue to make us sick slowly killing us every day. I mean how are pesticides even allowed? Why is chemo still the “Gold standard of care” when it kills far more than the few which it treats. Why do new methods gets squashed if it can’t get a patent to generate billions?
If anti-virals have at least some palliative effect, isn’t it logical to conclude that there is a viral cause? Wouldn’t they do nothing if there was no virus, or is there something else happening?
I think the problem lies in the gut. Its a whole ecosystem with virus, mold, yeast, bacteria, biofilms, and more. So, its quite possible that this cocktail is taking out something other than HSV1 or is taking out HSV1 and a host of other things also. At some point the remaining things that are resistant or can adapt faster to the cocktail come into a new balance. The reason some people may get worse from anti-virals is that it changes the balance in a negative way. Perhaps by killing some bacteria that was keeping another in check. Anyway, these organisms submit toxins or proteins that cause certain genes within the persons cells to turn on or off causing the symptoms they experience. At least that’s my 2 cents worth.
Chris, I don’t think an antiviral would kill bacteria as its intent is various viruses but our gut seems to be a large part of our immune system for sure.
Dave, the problem is that we still don’t know if viruses CAUSE FM or ME/CFS. It may be a secondary event due to…. who the hell knows? I’ve often wondered if the CNS changes that research has shown to be true…. if it would all revert back to “normal” or if it’s permanent regardless of intervention and of course I have no idea. M
I took antivirals and started to feel so much better. I was told after taking blood testing that I had high levels of EBV and others that can replicate.
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I will be 78 soon, and I have had Fibromyalgia even before it was given a name. Now I have it along with aging problems. I’m not only tired, but tired that there isn’t any solid treatment. I’ve been on lyrica since it started on a trial basis. It is no longer effective, but I still use it for lack of anything else. Dr., please give us some effective treatment. Several vitamin sources have come up with treatments, but they are expensive. And Health Insurance doesn’t cover them.
Honestly, being bedridden, disabled waiting on a treatment or cure is wearing on me. Ampligen made me 70% better but can no longer afford. Our house that was paid for had to be sold because I can no longer work. I guess what I want to say is I’m done with it all as far as getting better. I’m not living Just existing and if God forbid one of my Dogs was this sick I’d let him go to Doggie Heaven. Watching yourself deteriorate each day literally knowing you are mentally and psychically diminishing is torture. If I get much worse I’d assume check out I’m just a burden to my Wife. I’ve already ruined her life or CFS/ME has whichever. I’ll be honest I wouldn’t wish this on my worst enemy I’d just shoot’m I’m not a sadist. I appreciate all you do Cort but at some point it is what it is….thank you for providing this forum…
Matt, K Pax Immune Support has helped me go from bedridden nearly daily to just some days. Along with that product, I started taking K Pax Energy. K Pax addresses mitochondrial fatigue. You can do research on the products and their development and efficacy. I believe the mitochondria are definitely involved in ME/CFS. Best wishes to you.