Patient “X” was living high when he got ill. A course creator and director for an enterprise delivering transformational experiences, X thrived on his 100-hour work weeks. From the U.S. to lndia to Australia to Germany, he made his living making a difference with people, and he loved it.
X was extremely productive by society’s standards but it mattered not when he met up with ME/CFS.
That is until one day in 1990 when he was exposed to an ungodly amount of toxins and suddenly went from a force of nature to a twitchy, hypersensitive wreck. “X” remembers the exact day he became ill.. On a scale of 1-10, with ten being perfectly healthy, X went from a 10 to 1-3 with remarkable speed. He was sick, often terribly sick, for the next 26 years.
It was a remarkable transformation for a remarkably productive human being. Fatigue, post-exertional malaise, pain, noise and light hypersensitivity, cognitive issues, gut problems, vertigo, orthostatic intolerance – you name it, he had it. Dr. Cheney told him he went from aerobic to anaerobic on an exercise test faster than anyone he’d ever seen. He was so hypersensitive to noise that his children’s rambunctious yells felt like someone was plugging his nervous system into a light socket. Any kind of stress such as a little alcohol or even mild body work could leave viral lesions bubbling up to his skin. Some years he was able to work only a few hours.
X had made his living transforming people’s lives; now he had to continually stop himself from committing suicide.
X ended up serving as one of Dr. Cheney’s human test subjects for about 20 years. Dr. Cheney was nothing if not creative in his search to help his ME/CFS patients, but little of it other than Klonopin helped. The rest of it (vaso-intestinal peptides, whey powder, cell signaling factors, GcMAF (three-year relapse, etc. etc.)) either didn’t work, wasn’t tolerable, or in some cases initially produced an improvement but was followed by a crash.
X didn’t stop at Dr. Cheney. A short stint with Dr. Peterson failed to produce results as well, so on his own he tried spiritual integration therapy, brain retraining, enhanced external counter pulsation (EECP) therapy, and at one point even a shaman. He estimates he spent about $200,000 over 25 years in his quest to get well – none of which moved the needle much on his health.
By the time he stopped seeing Dr. Cheney a couple of years ago, he’d resigned himself, not surprisingly, to a future of unrelenting illness. Then he heard of a longtime Chronic Fatigue Syndrome (ME/CFS) patient who’d recovered doing a doctor’s new protocol.
He decided to give his health one more shot.
Paradigm Breaker
That doctor seemed the unlikeliest candidate for a breakthrough. A surgeon in the modest sized town of Tuscaloosa, Alabama (pop 99,000) one Skip Pridgen was trying to turn the world of fibromyalgia and ME/CFS upside down.
Pridgen had no history in fibromyalgia and is not a researcher, but he is an intuitive and sharp doctor, probably in much the same way that Dr’s Fluge and Mella in Norway are. When he saw some of his surgical patients with fibromyalgia linger even after a successful surgery, Pridgen dug deeper. Surmising that the culprit could be a herpes virus, Pridgen tried antivirals and then over time added more drugs. Eventually he came up with a unique protocol.
Dr. Skip Pridgen and Carol Duffy PhD – a herpes simplex virus expert – proposed that herpes simplex virus -1, not EBV or CMV, but HSV-1 – a virus that had never been associated with FM or ME/CFS – was the culprit. The virus, they believed, was turning off “circuit breakers” in the body which affected, depending on where the virus was lurking, everything from pain, sleep, digestion, cognition, and the ability to exercise. (Note the similarity between their conception of ME/CFS/FM and Dr. Oaklander’s: both believe something, an autoimmune process or infection is attacking nerves across the body.)
Small Nerves – Big, Big Problem? Drug Trial Points Finger at Autoimmunity in Fibromyalgia and ME/CFS
Pridgen didn’t know why HSVI-1 was reactivating in ME/CFS/FM patients but he had a novel idea how to treat it.
Three drugs formed the basis of “X’s” protocol – an antiviral (Famvir), an anti-inflammatory (Celebrex), and an antidepressant. Each drug smacked HSV-1 in a different place in its replication cycle, rendering it inactive and unable to replicate. At one point, Pridgen upped his antiviral drug dose. Any time X was under stress he was advised to temporarily increase his dose.
Pridgen’s treatment protocols don’t stop at the viruses, however. Believing the body needs the maximum opportunity to heal, he addresses every physical factor he can find. X’s gut issues, for instance, were addressed. Tramadol was prescribed to temporarily get his body out of pain – another stressor. X described a friendly, intuitive and sharp doctor.
A New Experience
After 26 years X said it was hard to imagine getting well. In fact, it had only taken one year of illness to erase all memories of wellness for him. He simply could not dredge up that experience. So, when his health finally did start turning, it was a moment to remember. In fact, X remembers the moment he knew that the “switch had flipped”.
About ten weeks into the Pridgen protocol he and his wife were at a noisy, crowded restaurant – the kind of high stimuli place that usually left him dizzy and sound sensitive. This time he realized that he was absolutely fine. .He was coming back. He turned to his wife and said, “the switch just flipped.”
The sensation was so vivid that it reminded him of Dr. Naviaux’s Dauer hypothesis where cells in danger turn themselves off, and then back on when the threat has passed. Cognition, digestion, sleep, the ability to tolerate exercise, physical musculature – everything improved as the protocol began to work.
A couple of months into Pridgen’s protocol, the switch flipped for X
Two months after X started to improve, Pridgen told him to start exercising. Exercise used to exhaust him and make him dizzy and crash for one or two days following. Now its only side-effect is that he’s getting stronger. At 68, X is now doing Pilates and firming exercises every other day. Eight months after he started Pridgen’s protocol he reported that he’s now a 8/10 on the health scale.
X knows four people who have either recovered or almost recovered on Pridgen’s protocol. When last heard from, a friend who’d been sick for 30 years was putting a new roof on her house – herself. Another person with Lyme disease who’d lost his hearing and had night-terrors is now back at work and sleeping fine. X’s son, ME/CFS apparently runs in his family, is recovering as well.
Whether or not Pridgen’s protocol works for one person or another, it’s very good news to see someone who’s at their best, someone who was a “3” out of 10 for over two decades return over a period of six months to good health. In X’s case the phoenix truly did rise from the ashes. X’s recovery suggests that long term damage had not been done. Perhaps ME/CFS/FM patients’ systems have been put to sleep as Naviaux has suggested and can be re-awoken…
After 26 years of misery, X said he considers anyone who has ME/CFS and is still here heroic.
Through the Valley of Death
Before Pridgen, nobody had seriously proposed that viruses might be at the heart of fibromyalgia. Undeterred by the total lack of agreement in the fibromyalgia field, Pridgen formed a startup, got through his Phase II trials, and is now attempting to make his way through the “Valley of Death” in drug development – the Phase III trials. Pridgen reported that he is in discussion with a number of investors and that the FDA has cleared the way for the trials to begin once the funding is secured.
The recent Phase III trial losers (Rituximab, Mirogabalin, the Flexeril derivative, the Synergy Compound) in both ME/CFS and FM point to what a big hurdle those trials can be. Each of these treatments seemed on track to succeed. On company was so enamored with its drug that it began a world-wide 10,000-person trial in an attempt to get world-wide approval. The drug failed.
Pridgen’s protocol is in about the same place that Rituximab was in a couple of years ago. The early reports were very good leaving patients excited. As with Rituximab, it’s clear that some people benefit greatly but we don’t know if they are a few lucky individuals or if the treatment will broadly work. Next year, if Pridgen can get the money together, his big Phase III trials will begin and we’ll see if Pridgen will upend our understanding and treatment of fibromyalgia.
- Check out Health Rising’s Pridgen Protocol Resource Center for Fibromyalgia and ME/CFS for more information
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Thanks to the 133 people who’s support has brought HR 60% of the way to meeting its fundraising goal. Dr. Pridgen’s antiviral protocol is of enormous interest to both FM and ME/CFS patients. How have most people found out about it? A Google search reveals that blogs produced by Health Rising (mostly showing up on Simmaron’s website) dominate the Google search results.
That’s not unusual. From Dr. Pridgen to Ron Davis’s work to small nerve fiber issues Health Rising provides information on many subjects you would never otherwise have heard of. Please keep the information flowing and support HR with your recurring and one-time donations. Find out how here.
Part of this protocol is heavy rest and avoiding stressors. Many of us are improving with just severe, heavy rest at 110% of our resting heart rate for most of the day and keeping our maximum heart rate at less than 50-60%(220-age). Is th key the rest and avoidance of triggers (foods, chemical…)
I think that rest is very important and Dr. Lerner also admonished his patients to rest, rest, rest when they were on his antiviral protocol and I wondered what role rest played in his protocol as well. On the other hand, X went through years without working hardly at all, and many people do take care of themselves. My guess is that the protocol is needed and rest really helps when you have it.
Some people are able to slowly rest themselves to health, though. It’s something I personally wonder about! We have some of those recovering stories on Health Rising.
https://www.healthrising.org/forums/resources/categories/mind-body-pacing-exercise.125/
Well if REST was the cure for this nightmare….I would not be ill…as my body only wants to SLEEP!!!!!! I sleep 12-14 hours per night…and sometimes during the day…depending… I am FULLY 1,000% convinced that FM, CFS, ME are VIRAL… I read MEDICAL MEDIUM and it resonated like NOTHING I have ever read…and that is after 45 YEARS OF HELL!!!! I have been ill since 13 years old and coincidentally I had a tick in my ear around that time of year…. so Lyme also…. it has just been a MISERABLE life…. from exuberant type A wanting to change the world to living on the couch as a recluse… I am going to really check this out…as I have been diagnosed with HSV1-2 and HHV6 with EBV…. Thank you for this article Cort!
Jacque Simmons,
There was no “Reply” button for your comment, so I’m hoping you may one day check back and see this.
It’s been almost 14 months, since your post, and I’m wondering if you followed the Anthony “Medical Medium” William’s book(s)? If so, how are you now?
Personally, I’m not a believer in his information, but that’s just an opinion and all that really matters is whether or not people get well. With that stated, I do hope you’re well or on your way.
Walt
I’ve had fibromyalia for a long time; way before my diagnosis in 1998. I have taken some of these medications and gotten better. These flares would come and go. But, have had such a bad flare. I’m 70 ears old, with a physical sleep disorder and have had five sleep studies. I was put on a strong medication for sleep and have a good night’s rest everynight. But, when I wen to the ER at Alaska Reigional, they gave me something in my vein that was started to help me. I was released with Relaxatin. Well, This medicine doesn’t seem to work. I know it hasn’t . I’ve used it before. I don’t know where to go. The doctors in Alaska seem to think all drugs belong to them. I understand everything that goes along with this and why doctors won’t give drugs unless it’s for an injury or you’ve been operated. Well, because of FMG, I feel ignored and am think about taking a trip to the lower 48 where I know I can get attention. Sandra Johnson, Anchorage, Alaska 99508 s.johnson@gci.net. Thanks.
https://pubmed.ncbi.nlm.nih.gov/29885638/ my doctor prescribed low dose naltrexone and it really was a game changer.
Not sure I understand your question/comment.
The Doctors, in Alaska, will not medicate me! They say, without me understanding, that there isn’t anything they can do and for me to go to another doctor. I”ve been denied so many times from doctors, because they don’t give opiniods out, or injections. I feel they think I’m a opiod junkie. That Fibromyalgia patients are druggies. So, I get nothing for my pain. PT has bee prescribed. I’ve been sexually assaulted some years ago, then again, a few years ago. I don’t want to do PT. Sp, it would be good to get to go to a doctor that could give me some help with pain and that I could trust about referring me to Physical Therapy.
That is incredibly interesting. I have always said that keeping heart rate to 65% of theoretical maximum and less, was an essential part of my own successful protocol for FM. I think this is more important than whacking the viruses. I think every “success” involves getting the “activity” right. Sedentariness is deadly (deconditioning, and in people with the fascia issues of FM it lets adhesions continue to form) – but over-exertion is deadly too, and “over-exertion” can be at a very low point for people with these conditions.
I keep hearing of success stories where one person swears that some drug helped them, another person swears that a different drug helped them, another swears that trigger point therapy helped them, another swears that needling helped them, and so on. Every single one of them was getting the activity and exercise level right even if by accident. I think the exercise is the crucial thing, and anything else you might do that makes sense, has beneficial effects that it would not have if the patient’s activity and exercise was either insufficient, or excessive. In fact the more tools you use, probably the quicker you will get better. Ketogenic diet, the Guaifenesin protocol, whatever. I would advocate large doses of high quality magnesium and malic acid for everyone with FM at least. Hair Tissue Mineral Analysis, intelligently interpreted and with appropriate supplementation and detox, will be a plus for any patient too.
My problem for 20 years that meant that nothing helped, was that I was always pushing myself too hard, thinking exercise was good, no pain no gain, and FM pain is “imaginary anyway”, CNS hyperactive, not anything to do with energy metabolism or muscle repair or anything tissue-related. In this I was deceived by the “mainstream” hypothesis about FM. Even if it is a virus “shutting down pathways”, physical and palpable damage is occurring to tissues in people with FM, via fascia adhesions, which worsen post excessive exertion.
Ah the fascia…who knows? It’s certainly an interesting idea that getting activity just right might do it for some. I’m sure that it does actually.
Phil, I was unable to get my activity levels just right, even with all the resources available to me from this website. I was firmly stuck at a functionality level of about 30 %.
However, in the last few weeks I have seen a sudden improvement of about 10-15% just from giving up sugar. I had already given up wheat a few months ago, which allowed me to gain about 5% functionality. Now I finally feel ready to increase my activity levels.
Giving up these two foods has made a huge difference, which is now actually allowing me to implement a balanced activity/rest schedule with the aim of gradually increasing activity for the first time in the last ten years. I am not diabetic and I am not allergic to wheat, nor am I gluten intolerant. I have been thoroughly tested, but I cannot explain why these foods had such an impact on me. I personally think it has to do with mastcell activation. I fall into the POTS/MCAS category of ME/CFS. I believe that for patients like me avoiding mastcell triggers is crucial if we are going to have any chance of increasing our activity levels.
Conny, I suspect that whatever combination of things helps anyone, the right amount and intensity of activity and exercise is the primary thing that enables everything else to work. Everyone should start with that, and add other treatments / therapies / strategies that are known to be part of success stories. I didn’t mean to say that the exercise strategy would work entirely on its own, only that it seems to be the crucial ingredient that is common to everyone with a success story. Everything else in the success stories is different.
I am also not so sure about ME / CFS – I am talking about FM. I do not believe that they are the same condition; some people might have both, and some symptoms are common to both. One possibility is that ME / CFS is a dysfunction at the cellular level (mitochondria?) but I strongly believe that FM originates from dysfunctions in the myofascia that manifest in palpable lumpiness and corrugations in muscle tissue all over the body. Because micro flows of all kinds, and nervous system signals, all must pass through myofascia, severe deformations must have a restricting effect. Therefore drugs, medications, supplements etc do not even get through to where they are meant to have beneficial effect – besides oxygen and energy not getting through (especially when the limbs are in certain positions and muscles tensed).
I would distinguish between FM and ME / CFS in the presence or absence of the palpable muscle tissue deformations. Unfortunately the mainstream medical profession has come to regard the technical term “FM” to mean “heightened CNS”, but I hold that everyone with this symptom who does not have some other specific cause (EDS, Hashimoto’s, etc) has the myofascia issues which are being scandalously ignored and derided by mainstream “experts”.
Phil, I have been diagnosed with POTS, FM and ME/CFS and am 4 years in. This is the first time I have read about the myofacia issues connected to FM, accept for a few sufferers posting online about painful “lumpiness”, and am wondering where I can learn more. I had severe plantar fasciitis before becoming ill with sudden viral onset and have the painful adhesions you speak about all over my body. Any time I ask a doctor about what they are or how to treat they just shrug their soldiers. I have both the traditional trigger and tender points attributed to FM, but these are dozens or hundreds of points of varying size and pain is also variable. I am stuck between a rock and a hard place with activity levels, as I find that even light stretching causes a flare up or crash.
Please send me your scientific evidence that led you to make these conclusions.
tsasurgery@gmail.com
I will say more in a new comment at the bottom of this discussion thread.
@ Cort Johnson’s ‘Ah the fascia…who knows?’
Y’all, prepare to be gobsmacked:
‘“We are uncovering a new frontier within our bodies – one with previously unimaginable implications for our health and well-being. What was once disregarded by medical science as inconsequential ‘goo’ – our connective tissue – turns out to be our largest (and most neglected) organ!”
As our understanding of the body as a matrix of electromagnetic energies deepens, we’ve come to see that the fascia or connective tissue (structuring, sheathing and interconnecting our circulatory system, nervous system, muscular-skeletal system, digestive track, organs and cells) is actually an energetic communication system.
The collagen that makes up most of the connective tissue in your body is liquid crystalline in nature. Liquid crystals -known to be semi-conductors – are able to conduct energy in the way the wiring system in your house conducts electricity. They are also able to send, receive, store and amplify energy signals – like your high-speed internet connection.
Because fascia interconnects every system in the body – it provides a basis for information and energy transfer beyond purely chemical origins. In other words, while we’ve traditionally thought of communication in the body as mechanical ( chemical molecule fits into receptor like a key into a lock), we now realize we can open the lock faster with energy (like remote control devices).” From Technologies of Qi: Yin Yoga & Connective Tissue, by Danielle Prohom Olson'[via Jane Barthelemy: Five Seasons Medicine]
The fascia issue is interesting, fascial release has been another part of my road to recovery. I have found another step up in improvement since I started fascial release with a patterned foam pilates roller (by Sissal). I’m using the Melt Method book and although it is a pain to learn, it is helping.
For information, I’ve had CFS since 1990’s and FM since early 2000’s, I’ve been mostly pain-free since 2006 via deep tissue massage, pacing and doing deep tissue massage (first of all with a practioner of old-school physio style deep/sports massage, later I was doing it myself)/cooling down inflammation afterwards. This ties into the idea of CFS/FM going into anaerobic respiration very quickly, I think I’m pain free as I’m flushing out the lactic acid out of my muscles several times a week.
The other symptoms – brain fog/exhaustion/gut/hormonal issues have slowly improved too.
I have found that working the fascia is extremely helpful in gaining *strength* and increasing mobility- especially if I’m in an M.E. episode and my mobility is at risk and my muscles are about to become solid and unmovable.
I didn’t know that M.E. existed and so pursued modalities whereby FASCIA was the target. Eventually because I was losing the ability to move easily, I developed my own body methodology to work larger and larger patterns or small minute patterns of fascia that I considered to be going “off-line.”
Now that I know a little bit more about how my episodes of ME cycle, I think these small sections are the ones under attack by the virus or virus after effects or virus in the brain.
One of my favorite ways to work open larger patches of fascia is with Cryotherapy. It has many great benefits and in addition to helping me loosen my fascia that gets tightened because it’s being targeted or taken out by the virus (think when a person gets the flu— they often have muscle soreness), Cryo at 3x a day activates Cold Shock Proteins….similar to how Sauna at a very high temperature activates Heat Shock proteins.
Very interesting Emmie! How much is the cryotherapy and your focus on your fascia helping? Thanks for passing that along.
Cort, thanks for tipping me off about the latest comment here. I see there are other comments going back to January, too. They are all interesting.
Emmie: I think you mean FM, not ME. Fascia issues will be FibroMyalgia, not Myalgic Encephalopathy. You could have both; I believe that M.E. leaves one vulnerable to developing FM due to the reduced activity.
Dar’s comment back in January is very helpful. This quote is very interesting (I have amended it for clarity):
“…Massage does not melt away the lumps in the fascial tissue. What it does do is re-liquefy the “ground substance” fluid so as to maintain your body’s ability to move. We see the need for this liquefication when we wake up in the morning or stand up after a long boring class and have to stretch. Your body naturally desires to maintain the fascia’s hydrated state. To restore this when it has been lost, heat and pressure are needed. Both can be provided through movement. Without movement, fascia will dry up and harden through a process call thixotropy…”
I would add to this, that I strongly believe that people with FM have a greater vulnerability to this “thixotropy” – not merely lack of movement, but the fascial ground substance is rendered thicker and more adhesive by toxins, including post-exercise toxins which are not being mobilised out like in a normal healthy person. Hence the important of pacing and not going into lactic-acid-producing intensity levels.
Rebecca: yes, you have discovered the right approach. Don’t underestimate how important the “pacing” is. I argue that everyone who gets better, was pacing properly as well as doing the other helpful things.
I’m curious how the massive toxin exposure event ties into this. Does treating the herpes virus affect toxins too or does it only treat the herpes virus?
That’s a very good question. It’s possible that the toxin exposure allowed the herpes virus – which we all carry – to reactivate. Perhaps over time the toxin’s were taken care of but the herpes viruses remained active.
It seems that different researchers all want to regard their own particular insight as “the” breakthrough in knowledge of FM. John Quintner for example, is adamant that it is a faulty gene. Pridgen says it is a virus. Everyone with FM seems to have had multiple triggers, often including exposure to a toxic substance (mine was cadmium). Many have had surgery that also coincided in time (me too). So why can’t everyone accept that their particular insight might be one pre-condition (and possibly not the only one) and not “the cause of FM”? Everyone wants to claim too much for their particular insight.
There is probably numerous people with latent EBV who do not succumb to FM until some other trigger is added to the burden on the system. Probably the same for the faulty gene if it is there. The size of the study needed to determine these things, would be massive, it would need to involve a massive cohort of numerous healthy people, track them over time, and determine what were the factors in those few who did get FM.
No, the protocol enables the immune system to force the virus into a sleep-like state
And do all patients resolve after that, including the long-term chronic ones, with no other helping strategies? I am just suggesting that it is important to not overlook the possibility of a correlation between “patients who improve” and the activity and exercise patients are doing.
I agree that discovering “the” pre-condition to FM is what will enable a “cure” rather than a life coping strategy, which is how I regard what I have done. Maybe switching off the latent EBV will mean that once the physical dysfunctions (corresponding to those fascia adhesions) have resolved, the FM patient can do sports again without relapse, or become sedentary again without relapse, get exposed to toxins without relapse, endure stress without relapse, and so on. Or maybe switching off a faulty gene will put FM patients into this happy position.
On the other hand, I object to “looking the other way” regarding the palpable lumps and corrugations in muscle tissue, and disregarding the potential for the cause of FM to lie in the area of renal / hydration / energy metabolism dysfunction and other things that affect the muscles more directly. But if a virus is the upstream cause of any of these things, then it absolutely could be “the” crucial factor, we just need to not be blind to the pathways between the virus and the patient’s debilitation.
None of what I am saying is meant to apply to CFS or patients who do not have the palpable muscle-tissue deformations.
Hi Dr. Pridgen,
Any thoughts on the following?
Virucidal effect of peppermint oil on the enveloped viruses herpes simplex virus type 1 and type 2 in vitro.
https://www.ncbi.nlm.nih.gov/pubmed/13678235
Thanks,
Walt
Hi Everyone,
I have not been on this site for a while now, partly because I am feeling so much better.
I had ME/CFS for 15year & would never say I am my old self that went a long time ago! However, I am about 8/10 and can relate so much to this story.
Like x my journey has been similarly, gone everywhere, got nothing but a reduced bank account.
My health began improving about 3 years ago and has slowly continued.
I constantly monitor my energy levels to make sure that I am going forward together with being very proactive.
I have been taking a similar mix of medications, a combination of antidepressant, an antiinflammatory together with gut restoring pro&prebiotics. I think this combination has helped me. However, It has been a slow process over the last couple of years.
I have also been having Acupuncture treatments to improve my sleep, therefore I can see the benefits of such a program describe in this article.
I have long believed that a Herpes virus was responsible for my ME/CFS.
Congratulations Howard and thanks for sharing your story.
Thanks, Cort.
Keep up your great work, we all have benefited from your efforts.
Very happy for you Howard! I’m about 11 years in now and this article plus your comment has lifted my spirits today. Thanks Cory for another great article.
🙂
Glad you are having success
Cort, do you know which antiviral and anti-depressant Dr. Pidgen uses?
Good question. I know he uses Famvir – I don’t know if he uses it exclusively but it was used in the Phase II trial. Pridgen tried all of them I believe and found that Famvir worked best.
X told me he used both generic and non-generic brands of antidepressants. I will try and find out what they were.
The protocol is individualized. The NSAID can vary as can the antiviral agents that I use. Any addition meds are carefully selected to treat other areas that are affected by this disease. The REAL issue is that these patients likely have an immune deficiency that prevents the HSV-1 from becoming dormant. I totally disagree and feel strongly that FM and MECFS are part of the same spectrum of diseases-Somatic Symptom Disorder. They are different manifestations of the same disease. My equal success with FM, MECFS, and IBS suggests that we are on the right track.
You mention that the real issue is immunodeficiency. Have you considered adding an immunomodulating drug to the treatment plan?
Wait…you’re saying that an active viral infection that is causing severe physiological pain/injury/disability is part of a mental disorder?
Can you explain how patients – such as X – who are manifesting objectively organic illness that responds positively to antiviral medication is somehow a mental infirmity?
How is that even remotely possible?
Melee, I have argued that in these cases, of course people have ended up with CNS dysfunction, as a consequence, not a cause, of very real pain from all over the body bombarding the CNS. I even disagree that “pain is amplified by the CNS”, period, rather that we don’t even feel the pain we are actually in from the ubiquitous locations of “injury”. We tend to only be conscious of the worst one or two – but when pressure is applied to any of the tender points, of course the pain increases and “cuts through” the overall numbness. Just like a raw wound might not be all that painful unless you poke it! I regard it as nonsense that the “tender points” agony to pressure is “the CNS over-reacting” rather than actual “injury” at the spot. Yes the CNS is hyperactive but this is a consequence not the cause.
I see all comments and the article discuss HSV1 exclusively. What are the odds that HSV2 play into this in the same way? My CFS started with EBV, but what happened at the same time is that very dormant HSV2 reared it’s ugly head. With this very interesting work, I wonder if you have any thoughts as to HSV2 begin involved in the same manner.
I am suffering for 30+years now. Any chance you take out of state patients via video conferencing?
Did I understand you correctly? You wrote that FM and MECFS are somatic symptom disorders. Yet you espouse that reactivation of HHSV-1 is behind their symptoms. Those two positions seem opposed. I’d appreciate clarification.
I have fibro and have tried antivirals which have really helped . I have only taken them in small doses. I think if I took larger doses I would be much better. The problem is that so far the antivirals that I have used cause hairloss. Did you have the same symptom?
Living in Australia with ME for almost 40 years it never fails to astonish me the investigations & treatment you have all had. My only treatment that has helped has been 7 years Nystatin & Nizoral from 1984. I have always been convinced that a herpes virus, cold sores or chicken pox was very much involved.I have improved from 2 to 8 by avoiding culprit foods / chemicals stop when exhausted. Still crash badly if exposed to perfumes, etc, OK within my own 4 walls. At least lack of treatment has left my bank balance relatively energised. We went to see Unrest recently, & now the Australian Government has set up a 12 month investigation into ME/CFS, the illness that didn’t exist. WOW!!! 🙂
Hi Audrey, there has been a research centre for ME/CFS in Australia for years. One in Qld and a treatment centre somewhere in Melbourne. More input of financial support is always useful. Maybe we can make a breakthrough….would that not be something.
Here is the link for the Qld centre
http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases
Let’s see what the phase three trials show. As you pointed out, Cort, numerous theories, but few meds, alas, abound. Thanks for reporting.
My dr and I tried to replicate the Pridgen Protocol …sans antidepressant. Unfortunately I didn’t tolerate the Celebrex for long (although I don’t even remember the side effects now).
Over the past 5 yrs I have tried many different treatments. The one thing that has made a significant (positive) difference is magnesium injections. My heart rate is down and even, my blood Pressure is not crazily elevated, and I can move like a normal person where before I shuffled and limped. Pain levels aren’t fixed but much reduced. Cognitive issues too have lessened.
I still only function at 20% but I function now.
I would have share the exact protocol if your MD had just asked. Unfortunately your dosages were likely off, the rest of the protocol was not followed and you were not told exactly what to expect.
Hi Dr. Pridgen
I have had Chronic Fatigue for 30 years. My story is similar to X. I have many tests that show CMV and EbV and Herpes Virus.
Would you consider working with my MD in Scottsdale AZ using your proptoccal that helped patient X?
Thank you.
Cort thank you for an excellent article. Do you know A. Is Dr.Pridgen taking on patients ? B. If not does anyone know of any other doctors who would treat/follow this protocol ?
I’d be most interested to know the 3 combination drugs used and the doses if you get hold of them? I’m in the UK and would try to find a doctor willing to treat me with this protocol, failing that I’d try and make it to the US if I could find a doctor there willing to follow this line of approach.
In regards to just ‘” rest rest rest” I’m afraid I don’t buy into this one. I’m six years into this illness now (which I believe like X started with a massive toxin exposure) and reduced me to 80% bed bound. More than enough years of ‘rest’ to know it hasn’t helped me one little bit.
I believe Dr. Pridgen is taking patients. He will work with your primary care provider if he/she is willing to follow the protocol. If you can make it to the U.S., though, I would first see if you can get to Pridgen as X felt he was very sharp.
We are taking patients. Email me tsasurgery@gmail.com
Hi Dr. Pridgen,
I gave my Rheumatologist info on your clinical trials. I already had an Rx for Celebrex due to osteoarthritis. It did nothing alone and I could not take Advil while taking it. She prescribed famciclovir and I had 4 days of HUGE improvement. My insurance would only cover 21 days of the famciclovir. Since I work full time and struggle, I have not been able to fight for or find famciclovir without insurance. I plan to give her your contact info again because I am desperate to get some semblance of my life back. I have had Fibromyalgia since 1992 and have never been the same. Thank you for your work.
Thanks for the article Cort.Have you tried this protocol yourself?Like Karin I too live in the UK.I’ll be interested in your reply to her and to others too.This sounds promising but there have been so many false hopes over the last 50 years plus that one shouldn’t be too hopeful.However if it helps some patients that is a big plus.
No, but I hope to.
I can definitely attribute my CFS to HSV-2. I would also love to know the the name of the antidepressant, as well as, pre and pro-biopics and the dosage of Celebrex that Dr. Pridgen is using.
See email listed above
Tina, interesting that you posted. I just posted this question to the group. Can HSV2 have the same effect. I would love to know if the doctor thinks so. My CFS (over 20 years ago) started with EBV, but at the same time a very dormant HSV2 appeared. There has to be something to this. Doctor? Thank you.
Cort please call it improvement not recovery, This is very personal to me, because I am about 7 or 8 and I need still accommodations, specially at work. If you all call a 7 or 8 recovery, it hurts those of us where we still go up and down and need support to make it into as normal of a live as possible.
Why didn’t “patient X” tell what the “Ungodly toxins” were?
He was later found to have extremely high levels of mercury.
Industrial exposure?
Bad amalgams?
The way it was written, it sounds like he knew what the ungodly exposure was.
Tests later revealed at least some of what he was exposed to. I’m not sure if he knows exactly how the exposure occurred. (Food? Something else?) He got very sick one day and that was it…
Is this treatment mainly for fibromyalgia or will it be for me/cfs as well? All the research online mostly references fibromyalgia.
Dr. Pridgen trial is for fibromyalgia but he believes the same applies to ME/CFS.
It works well for both
By the way, I knew the late Dr R. Bruce Duncan and respected him. Have you read his books (on latent viruses)? I was sorry we lost him just as he was giving us so many insights.
The protocol varies from one individual to the next. Patient X’s treatment required Cymbalta
Does the protocol work with someone like me with HHV6 and EBV or only those with positive HSV1?
Thanks Cort, do you know if X had a confirmed active HSV-1 infection via blood test?
Good question. I don’t – I don’t know if that’s required. Maybe Dr. Pridgen can answer.
Thirty patients with FM and chronic GI issues underwent Gastric biopsies where 100% had only HSV-1 and 83% had evidence of an active HSV-1 infection. Interestingly only 68% of these patients were sero positive. I have stopped checking the patient’s serum because only 70% of the patients are seropositive and I know they have HSV-1 in the GI biopsies
Dr. Pridgen, are you saying that you don’t test people with GI, FM, or CFS at all anymore? If so does that mean you take anyone with these symptoms as patients? Do they not have to prove HSV1 for you to treat them ore suggest treatment?
Dr. Pridgen, fascinating work. I have been mostly bedridden fro the last 13 years, sick but functional 20 years before that. March of 2020 I got my first case of shingles. I went into a powerful remission for about 8 weeks. Could have my immune response the the chicken pox virus also swept some other herpes viruses? ThX!
In 2018 I am avoiding useless doctors like the plague (pun intended) & western meds are zero (except Thyroid Arm & Ranitidine). Also Vit D, B12 shots as needed & Omega 3 capsules. Resting while listening to audio books (can’t tolerate light or heat, but the right narrator actually helps). When not sleeping (using medicinal hash oil & cannabis, Benadryl in Tylenol PM) I use anti-inflammatory powders dissolved in NUUN (electrolyte & vitamins) plus MARULA (paraffin wax) hand cream (for pain & headaches). Heating pad as needed, but bedroom is at 60F, 24/7. Any vertical time I spend now is limited so I only “wake up” for family. I will visit the genetic medicine team (UW in Seattle) at least once to ask them to interpret best treatment based on my mutations. Other than $25 monthly donation to Open Medicine Foundation for genetic based research, I am exhausted by being bounced around by ignorant & arrogant doctors (1 year of Valtrex anti viral for EBV came too late as did diagnosis, anti-depressants caused vomiting & diarrhea, loss of appetite), research, fighting for SSDI. Yet I am only in my 4th year of ME/CFS. I did manage a 3 minute testimony to HHS December 2017 and suggested they educate doctors, lawyers, judges politicians by mass mailing them recent little book: “M.E. & Me” by Dr Hng (a UK gastroenterologist who has ME/CFS) – it is just the basics because ME/CFS is STILL a complete medical mystery in 21st century. SIGH.
You’re in much the same place X was – except that he’d been in it a lot longer. Let’s hope that Pridgen can get the money he needs for his trials and they are a success.
What was the antiviral used in this protocol?
Famvir
I will share this with you in person or give it to your Doc after they sign a confidentiality agreement
How do I proceed forward sign the agreement and get the info to my dr.to start the protocal?
I appreciate Dr. Pridgen & his work so very much. As an FM patient , I pray for great success for him. Please don’t forget,though, an Ormond Beach, Fl. Otolaryngologist named Daniel Dantini found that anti-virals were instrumental in his recovery. He wrote a book called, “The Fibromyalgia Remedy”. You can google him as he has a website, too. This was quite a few years ago. Dr. Dantini, himself, had fibro in medical school. Thank you to BOTH Dr. Dantini & Dr. Pridgen. God bless you!
Enquiring minds want to know: What is Dr. Pridgen’s basis for supposing that herpes simplex is a root cause of ME/CFS or fibro?
There is no doubt that these muscle tissue deformations exist, because they are palpable. “Mainstream” medical reasoning is circular – WE haven’t been able to find anything, “scientifically”, in these palpable lumps and corrugations therefore there is no point in continuing to research and/or develop our diagnostic technology until we DO find something. The tenderness and “rawness” of these spots to pressure, is “phantom pain” from the CNS, nothing to do with anything going on in palpably deformed muscle tissue itself….! Come ON: this is the worst kind of illogic, arrogance, charlatanism and outright sadism towards millions of sufferers.
The only properly focused study that I am aware of, was Wigers and Finset (2007) with spectacular improvements for most participants, carefully assigned exercise and direct “trigger point” therapy on the lumpy spots being core elements of the program.
Asha, I recommend Devin Starlanyl’s book “Healing Through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction” because it contains so much information and references. But I have disagreements with some of it, which I outline in a review on Amazon.
https://www.amazon.com/review/R3X84IN5YNVP7/ref=cm_cr_srp_d_rdp_perm?ASIN=1583946098
I disagree with the focus on “Trigger Point Therapy” as the best therapy or even one that will work at all without other strategies. I disagree with the term “Trigger Point” being used for what are actually “myofascial adhesions”, this term being misappropriated has done a lot of damage to the credibility of the basic hypothesis.
I also recommend the book “Fascial Fitness” by Robert Schleip because of its insights about the fascia. He does not know anything about FM and I do not recommend trying his “fascial fitness” strategies until you have made significant improvement. His focus is on chronic local post-injury conditions, exercise recovery, improved flexibility and reduced proneness to injury, in normal healthy people.
I am entitled to formulate hypotheses seeing I have 20 years of negative experience with FM and 4 years of self-help improvement with NO THANKS to the mainstream medical profession. The palpable lumps and corrugations have increased in magnitude and extent as I got worse – especially when “mainstream” physiotherapists put me on a muscle-strengthening program, after 12 months of which I was struggling to stand up out of a chair, from the agonising pain in quads and tendons, and my rotator cuffs were on fire with pain like never before, along with worse pain everywhere – and as I have got better (reduced pain, increased stamina, increased limb range of movement, etc) these palpable lumps and corrugations have reduced. As part of this improvement, they have become gradually more and more responsive to hands-on therapies like myofascial release and accupressure (I refuse to use the term “trigger point therapy”). All hands-on therapies are a waste of time and money and a cause of needless pain until one has a balanced strategy that has set up a virtuous circle of healing.
I am thankful that some mainstream specialists I am in contact with, have the humility and open-mindedness to be encouraging and interested. I am not saying “my hypothesis” is “the right one” but it has explanatory power, in contrast to the BS hypothesis that has been followed by the “mainstream” for decades, consigned millions of people to living hell, and still sabotages any chance of research in the right direction, which last point is the worst crime against humanity in this whole debacle. Oh, WE haven’t found anything there (did we want to? – bah), so the people wanting to look there are “unscientific” and lack credibility, don’t fund them!!!! Words fail me.
Had the lyme patient treated her lyme? Is it assumed the HSV reactivated via a lyme infection?
Is herpes simplex virus 1 the same virus that generates cold sores or is that another one? Cold sores do tend to pop up quite easily and often if ones immune system is down. Having a quarter of a common cold will do it for me.
So if it would be the same virus, then would we be more vulnerable to a reactivation of it, knowing that reactivation / having cold sores is quite / ?very? common in the general population? I’m a bit lost here.
This is why I am skeptical that something simple that actually affects a lot of people who do not get FM, is “the cause” of FM. If I remember the work of Dr R. Bruce Duncan correctly, latent viruses of numerous different types are contributors to all sorts of unwellness. His treatment (of many different conditions) involved very low dose vaccines for the suspected virus. I have his book, “The Hidden Viruses Within You”. Unfortunately by the time I was diagnosed with FM, he was very elderly and no longer practising, and died not long after. I don’t have his posthumous book specifically about FM (completed for publication by a colleague of his) but I get the general idea.
I think that addressing some combination of any of the vicious circle of factors that is FM, will result in improvement, with the one essential ingredient being the exercise and activity. I would like to know of anyone who improved under any protocol in spite of being either sedentary or habitually pushing themselves too hard.
Hi Phil,
This time I’ll split my thoughts into smaller parts for clarity reasons.
I myself do take antivirals and they do support my improvement. On their own, they improve the base level of my health but that reaches a plateau after which I have to keep taking them in order to not get worse again. Both the type and dose however are not optimized; an optimized medication scheme might take me further. I do welcome doctor Pridgens search to find better combinations. Thanks good doctor for caring and searching!
One thing I wondered is what is most important with infections in ME/FM: one strong virus like EBV that *can* reactivate *from time to time* or several weaker viruses that *do* reactivate / get active *a lot of times*?
Maybe long term impact on ME/FM patients base health could be something like this?
Long_term_impact = reactivations_per_year * viral_production_per_reactivation * difficulty_to_fight_1_unit_of_virus
EBV may be far more difficult to fight, but cold sores may have a far greater product of reactivations per year times production per reactivation.
To put it in comparison, wort viruses are very resilient buggers both against disinfectant and the human immune system, but they luckily don’t seem to multiply that horrendously fast. Cold sores can make my mouth look like a mine field over one night in comparison. I also have something translated to “a viral scar” that used to grow every night to a swollen and painful thing and mostly disappear during the day. That’s roughly 50 cubic mm of viral loaded fluid production each night if not more if it leaked away. Cold sores do like overnight reactivations too, but luckily not every night.
As to the common cold, I have a really strong inherited weakness to it. It seems to linger and slumber in my body too. Just one walk without protecting my neck and chest against the cold is near always enough to get a partial cold and starting ear infection, even if there is no single obvious source of a new infection.
I do tend to think that ME/FM is in part a loss of synergy between life supporting and healing things on one hand and an increasing synergy between destructive things on the other hand.
Loss of synergy between life supporting and healing things:
I think good health asks for synergy between separate body functions in a 1 + 1 > 2 way.
* For example, optimal blood flow increases gut functioning, breathing capacity/efficiency, proper immune functioning, tissue repair…
* Good (diaphragm)breathing increase gut motility, blood flow, tissue oxygenation and repair…
* Good gut functioning improves nutrient take-up and reduces immune load (no gut overgrowth for example) and toxin production.
So they help each other in a positive circle.
Increasing synergy between destructive things:
* Poor blood flow decrease gut functioning, immune functioning, breathing capacity/efficiency, toxic waste removal…
* Poor breathing decreases gut motility, blood flow, ROS damage…
* Poor gut functioning increases malnutrition, immune load, blood toxicity…
So one disfunction incourages/creates/grows other disfunctions.
If even one disfunction can be broken it can and likely well shift the body to more constructive synergy and less destructive synergy.
I also tend to think in terms of “majors” and “minors” like in higher eduction. For example a major in biology and a minor in chemistry. Both are big chinks of education so minor does not mean few but rather less than the major part.
In that view you might have a major in connective tissue / fascia problems and be even sort of an archetype for “fascia heavy FM”. I may be close to an archetype for derailed blood flow issues were it not that I also have minors in poor breathing and outspoken weakness to a few select viruses.
As one big problem or a few sizable problems create plenty of new problems in their wake the overall disease has a lot of similarities despite having different main “drivers”. With that I mean that plentiful fascia damage creates blood flow problems and opportunities for viral infections and that blood flow problems create fascia and other tissue damage. In this view personal differences depend on ones particular weaknesses and strengths.
If one has a major in viral weaknesses that is correctly addressed, it may be halfway to get the body strong enough to heal itself. Add years of “experience” with the disease so that patients learned things like pacing, improving diet… and it might be sufficient to cause a “medication-induced” strong improvement.
I believe that finding out what my particular weaknesses in this disease are and learning how to address them somewhat efficient helped me reversing the declining trend. It sure ain’t easy however and luck is badly needed. I imagine that having better knowledge on “archetypes” in this disease and how to address them efficiently could help our community a lot. One of those very likely is the “viral weakness” archetype.
I believe medication can both “create” correct pacing and sufficient exercising under very good conditions.
Have for example someone who paces too few and exercises too much. Now add a medication that initiates either a positive shift or a positive spiral. That enables the patient to do more. If the patient did not change his lifestyle then he may suddenly pace sufficient thanks to the medication and his former over exerting may become a healthy exercise. If from that point on the patients reduces his pacing and ups his exercising *in a delayed/lagging way* then it very much looks once more like a medication induced improvement. For all what matters, it is a medication induced improvement. Being aware of getting the pacing and exertion component wright increases chances (a lot) that it lasts long enough.
I had once such strong medication induced improvement but at that time I was too unaware of what was going on for it to last.
I agree with the way you are thinking about all this, Dejurgen. Yes, the correct level of exercise and activity is moved upwards as one gets better for whatever reasons. But I think the guideline for heart rate remains, it is just that one can do more / go faster with the same heart rate as earlier. I have been exploring “going anaerobic” again as I have made so much improvement (I now have a very efficient aerobic system so I can exercise quite “fast” in some modes with a still-low heart rate). I do not suffer as much as I used to but there is still clearly a problem with a POTS-like rebellion from my cardiovascular system and also with post-exercise pain and stiffness with extremely slow recovery (1 week +) – and this is from just 2 minutes of over-exertion!
This is one of the factors that makes me regard myself as just having a good “coping strategy”, not at all a “cure”. I will regard myself as “cured” when I have normal healthy anaerobic capacity and also when the last of the painful lumps and corrugations are gone from my muscles. They are have been discernibly in retreat for the last couple of years and every massage session I have now resolves more of them quite spectacularly.
Because my speculative hypothesis is that these adhesions in the fascia are the cause of restricted micro flows of all kinds, especially when certain muscles are tensed (particularly when weight-bearing), then I am hoping that the POTS-like rebellion from my cardiovascular system immediately when trying to go anaerobic, will disappear as the last of these deformations resolve. The worst remaining are behind my knees, around the tendons on each side of the knees, and through the outside quad muscles from bottom to top. An obviously likely location for interrupting essential flows when I am upright and leg muscles loaded.
The Feldenkrais method which I have been doing regular sessions of for 1 year, is also helping in that it minimizes overall muscle tension by “training out” the wasteful “muscles working in opposition to each other” that plagues most people with chronic tension problems.
hi Phil,
For me, at the time, the guideline for hart rate was a mission impossible: 90 to 95 when lying in bed, still 90 to 100 when exercising to exhaustion and falling of the treadmill from time to time in a failed CBT/GET “therapy”. Afterwards it got even worse. But if possible it has plenty of merit IMO.
“a POTS-like rebellion from my cardiovascular system and also with post-exercise pain and stiffness with extremely slow recovery (1 week +) – and this is from just 2 minutes of over-exertion!”
-> My gut feeling says something else then fascia deformation is here at play. I feel you should have far less problem with it if you improved aerobic functioning by so much, for which congratulations. Especially if you improved the lumps and knots so well. Note: I don’t doubt that your dealing with those is at the base of your aerobic improvement, but my gut says something else about the anaerobic one…
Some quick thinking (with an exploding head :-() lead me to believe there is a striking comparison between what you describe and what I think would happen if, in an ME patient with to low (local) blood sugar levels, low local protein levels and depleted glycogen levels in the muscles (when the patient tries to exercises vigorously). I think I wrote something about those ideas as a comment on one of Corts blogs in the last two months.
The comment was about a potential way that low carb diet could help ME/FM patients. Too simplified: by blocking any possibility to go anaerobic and so avoiding its damaging side effect. That I thought should be harsh in the transition and potentially causing the “transition to low carb fever” or whatever it is called. Does it resemble a bad version of that?
I did some digging on Famvir (Famciclovir). To be honest, many of us are so ill that going to a doctor, any doctor is grueling or impossible. That’s pretty much true for me now. I found an online drug supply company, based out of Vanuatu that will ship to the U.S. so I always have a ‘stash’ of antibiotics, bladder meds, generic hydrocortisone, etc. I’ve been ordering from them for almost 10 years. I’ve done a tremendous amount of research over the years I’ve had ME/CFS, so I feel pretty much competent enough to be my own guinea pig or ‘dose’ myself when necessary for normal ‘stuff’. Not that I’m advocating using Famvir on your own, but I’ve done trials on my own for many different things, with less issues than when so-called doctors give me a prescription. Heck, the combo of Lunesta and Lyrica landed me in the hospital for a week after being on them for 6 months. And that was Dr. prescribed. No one realized that both drugs increase GABA levels, which was VERY bad for me…..Anyway, the site is inhousepharmacy (.vu). I put the vu separate so it doesn’t flag. The company is awesome. My husband even visited them when he was in Vanuatu a few years ago on a holiday to see the volcano. There are NO prescriptions required, (they don’t sell Class 4 drugs), no shipping fee, 800 # for the U.S. with real people that answer the phone, product is in original packaging or bottles, predominantly made mostly in Europe or Australia or New Zealand by major drug companies. I’ve had absolutely NO issues getting shipments to Texas in 2-3 weeks, nor problems with customs. And not a single problem with any drug or hormone I’ve ordered. The only issue at present is that they only take Bitcoin, but we figured out finally how to set up an account. In House offers a 10% discount when using Bitcoin, which is nice and additional discounts the larger the purchase. They used to take credit cards or bank draft but ‘big pharma’ made it impossible. Anyway, here’s what they listed for Famciclovir, (Famcimac) which they carry, although right now out of stock. “”Famcimac tablets 250mg contain famciclovir, an antiviral drug that is used to treat genital herpes and shingles. Famciclovir in Famcimac tablets 250mg is the prodrug of penciclovir and is rapidly converted into penciclovir, which is highly effective against HSV-I, HSV-II and VZV, which are double stranded DNA viruses. Penciclovir is a nucleoside analog that inhibits the viral DNA polymerase enzyme in virus-infected cells. A viral enzyme called thymidine kinase (TK) converts penciclovir to a form that is in turn converted to penciclovir triphosphate by cellular kinases (enzymes that transfers phosphate groups). This penciclovir triphosphate persists in infected cells for about 10 hours and inhibits the action of the viral DNA polymerase enzyme and this blocks viral DNA synthesis and inhibits replication of viral DNA, without affecting normal cellular processes. The action of famciclovir in Famcimac tablets 250mg (after conversion to penciclovir triphosphate) prevents the virus replicating and therefore stops the growth and spread of the virus, relieving symptoms of the infection and allowing the immune system to fight the infection. Since the activation of famciclovir in Famcimac tablets 250mg depends on the presence of a viral enzyme, cells that are not infected with virus are not likely to be affected.””
I can validate that inhousepharmacy.vu is good and reliable. I got my most recent order in only 10 days.
And they don’t require bitcoin if you are willing to do a bank transfer. That’s what I did.
I skimmed Dr. Pridgen’s published article and feel excited about this new information and possible treatment. I see that the HSV 1 is thought to hide in the ‘facial’ nerves. What nerves do they mean? The cranial nerves? I have been trying to link structure and dysfunction of the craniosacral system to the development of FM/ CFS for 19 years. So, perhaps dysfunction of this system ( and ultimately pressure on the facial cranial nerves) allows HSV to remain unchecked by the immune system?
Someone must explain why women are the predominant sufferers of FM/CFS. Do women suffer other viral illnesses at a higher rate? Could our immune systems be that inferior or glitchy compared to men’s ? Seems unlikely? I keep coming back to our wider, inherently more unstable sacrum/ pelvis issues. With some scoliosis, and some dura-meningeal torque all the way to the occiput.
Having said that, my son developed classic CFS/ FM type symptoms at age 5 after well documented Epstein Barr viral illness. He still has issues at age 37. Would love to see him get well.
Anyway, a big thank you to Dr. Pridgen.
Cort- have you talked at all with Ron Davis or other major CF or fibro researchers about Dr. Pridgen’s work? I wonder what their take is. The articles I’ve read seemed to suggest Davis’s group hadn’t found a single viral entity in the CF patients they’ve studied but I don’t know if they’ve done nerve (or I guess stomach) biopsies. Thanks!
I haven’t talked with him about Pridgen. I do know that Ron expected to find some pathogens in the severely ill patients but hasn’t and is using some other technology to get a deeper look. Honestly, I don’t think any blood studies over the past couple of year fishing for pathogens have really found anything. It is possible that localized infections are not showing up in the blood but Davis rather thinks if they’re present he’ll be able to find them in the blood.
To my knowledge they haven’t ventured into stomach or other biopsies.
Hi Cort, how far did Patient X travel to see Dr. Pridgen? Do you know how far any of the other recovering patients mentioned in the blog traveled to see the Doctor? I am interested in his protocol but concerned about the negative effects of long-distance travel on a CFS-weakened body, so I would be interested to know whether X improved in spite of long-distance travel. Thanks so much.
It was probably about a 1000 miles. I don’t if he drove or flew…
Thanks for that info. Do you know how often the follow-up visits were?
Patient X was my trainer in week 2 of the training in Boston in March 1983. Like the date you get sick with ME CFS, you don’t forget the dates of your first transformational weekends. I’m glad to hear he recovered. For me it will be 8 years on Feb 26, 2019 with little improvement and many of the normal life changes from living with this…having to give up work, sports and exercise, intensive reading and learning in return for daily headaches, pain, malaise, flu like feelings, PEM and fatigue from another league. Is there any way to connect with him to talk directly about treatment protocols and what worked?
Check out pages on the Pridgen Protocol – there’s a resource center on it here – https://www.healthrising.org/forums/resources/the-pridgen-protocol-a-fibromyalgia-and-chronic-fatigue-syndrome-me-cfs-resource-center.464/
I recently communicated with him – he’s still doing well.
It would greatly help to know which antidepressant patient “X” took for his Pridgen Protocol. There are many, and they are vastly different. Also whether Valacyclovir (Valtrex) can be taken as the anitiviral. Thanks,
Hi Cort, long-time reader and lurker in thewings, first time commenter.
My very CFS/ME-aware Integrative Rheumatologist is skeptical about the Pridgen Protocol for various reasons. However luckily for me, he’s very willing to help me try it. But I can’t find the dosing anywhere online, which I’m guessing is because basically it’s proprietary. So I’m posting here on the off-chance somebody can help point me in a direction I haven’t found yet.
About me – ME/CFS, POTS, MCS and MCAD. We’ve treated viruses, Lyme co-infections, heavy metals and fungus as the underlying cause. I initially respond well to everything, but after 2 months crash harder than before. I just got a wheelchair, can’t work, can barely walk, won’t bore you to death with my long list of the usual symptoms, and I’m scared silly how weak and sick I am.
I first got sick age 24 which was 27 years ago, after a virus. After 5 years I recovered around 70%, enough to kid myself it was “gone” because I was able to exercise daily for around 15 years. However I relapsed 6 years ago, again after a virus. Second time is much worse than the first, as if the first wasn’t bad enough.
This time – 1.5 wasted years consulting all the traditional docs, and the last 4.5 with my integrative rheumatologist and CFS specialist. He says he’s tried everything he knows to try on me, and I should be getting better. So I’ve done a ton of research into the few cases of real CFS recovery, and see I’m left with a couple of new avenues to explore:
1) CCI/AAI – currently having trouble getting the workup MRIs approved (multiple reasons why my illness and symptoms could fit)
2) Pridgen Protocol – I’d start tomorrow if I knew what it was
3) ANS Rewire program – just starting
Any 1 or 2 cents much appreciated, thank you.
Hi I’m really keen to know the protocol for dr Pridgen I 100% have FM caused by reactivating HSV. I’m willing to do the trial, I’ll try anything to have my life back. I also believe that I have an immune deficiency that prevents my body fighting off the virus.
We’ve done a bunch of blogs on him. Look up his name in the search box.
Here’s one – https://www.healthrising.org/blog/2020/01/28/pridgen-fibromyalgia-antiviral-trial-2020/
He’s using Famvir and Celebrex. He’s also willing to work with your doctor.
So good to find people who’ve been good enough to open up share. I’ve got just about all of the ones mentioned above.