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Dr. Pridgen on Doses, Fixing Broken Bodies and Why the Next Fibromyalgia Trials Will Be Better

If Dr. Pridgen is right, his protocol for treating fibromyalgia could end up turning the medical world’s conception of FM (and perhaps even chronic fatigue syndrome) on its head. The first treatment trial had good results but they didn’t exactly turn the FM world upside down. Geoff Langhorne asked him about that in an interview a couple of months ago and I followed up with my own questions.

A confident Dr. Pridgen explained why the first trials result were good but not earth-shattering and why the next trial results will be better. First some background.

How it Happened

“It was never my intention to be involved in Fibromyalgia” William Pridgen

Pridgen didn’t start out to treat fibromyalgia – he was simply trying to get at what was causing the diarrhea/constipation and abdominal pain in his patients.  Both he and his mother – a virologist – recognized that the pattern he kept seeing –stubborn symptoms which got better with treatment then got worse, and then better and then worse – could reflect a virus getting reactivated, then knocked down, reactivated then knocked down. Throw in the fact that his patients gut problems typically got worse during stressful events and a herpesvirus infection became a viable option.

herpesvirus

The pattern of remission and then relapse, particularly, after stressful situation, suggested herpesviruses.

Pridgen started off giving a couple of his patients a single antiviral herpesvirus drug. The fact that some of the patients did get better encouraged him, but it was not until he combined it with the anti-inflammatory Celexicob (Celebrex) that he really began to see results.

The big surprise was that his patients were reporting relief from a whole panoply of other symptoms. Their fatigue, their headaches, their muscle and joint pains, their sleep problems, their difficulty relaxing – all were improved. By the time twenty or thirty patients had reported this he really began to take notice.

“Holy crud!” in the interview he stated, “I discovered something.”

He switched gears and began offering the drug combo to people with chronic fatigue syndrome and fibromyalgia. He lambasted the idea that fibromyalgia or chronic fatigue syndrome are difficult diagnoses to make. As soon as he knew what these illnesses looked like, he said, anyone working in his office could spot them immediately.

Fixing What’s Broken

Patients tended to sporadically improve early with the full effects showing up after about three months. He wasn’t just treating herpesvirus infections, however. Asserting that these diseases “break things”,  he also worked on their treatment resistant sinusitis, acid reflux, thyroid issues, insomnia, anxiety, and depression.

fixing what's broken

Pridgen asserted it’s necessary to fix what else is broken for his protocol to have full effect.

In fact, his first step was to figure out what was broken and fix it and then put them on the drug combo “. He said “if you’ve done a good job with the first half” then 12 to 14 weeks into the treatment program a “switch” often gets flipped with people feeling a whole lot better.

Geoff then asked a great question – would you characterize this as a cure or a successful treatment?  Pridgen stated that you can’t “cure” or eliminate viruses, but that he did feel that his treatment protocol was getting at the core of the disease. Note, however, that Dr. Pridgen did put that qualifier – “If you’ve done a good job with the first half” – in. It’s important to treat the depression or generalized anxiety disorder, symptomatic gallbladder disease, severe reflux and chronic nonseasonal sinusitis, etc. for his combination treatment to optimally work.

His protocol, he believes, is much more effective at symptom reduction than the drugs currently approved for fibromyalgia. He does not feel those meds get at the core of the disorder: his does.

Herpes Simplex Virus-1

The predominant virus he believes that is causing the pain in fibromyalgia is herpes simplex virus-1 (HSV-1). HSV-1 has been put in the “fever-blister” category; it causes some unpleasant symptoms and nothing more. Pridgen believes that view and the accompanying attitude of benign neglect towards the virus HSV-1 are disappearing.

HSV-1, it turns out, isn’t always so benign, after all. Yes, the initial infection is usually mild. And yes, essentially everyone, including healthy people, is exposed to and carries HSV-1 in their body.

neurons HSV--1

HSV-1 hangs out in the neurons. In susceptible people that could be a problem.

Like the other herpesviruses, however, HSV-1 persists in the body hanging out in the neurons. After the initial infection, HSV-1 is able, in some people, to become reactivated, travel up the axon of the neuron to the nerve centers – waiting to be reawakened by a stressor.

Studies indicate that  almost any stressor including colds, eczema, menstruation, emotional and physical stress, stomach upset, fatigue or injury can reactivate it. It can cause encephalitis and blindness, and some evidence suggests it’s associated with Alzheimer’s disease.

Vaccines for HSV-2, a close cousin to HSV-1, are being worked on. If HSV-1 does end up being the cause of fibromyalgia, Pridgen believes widespread HSV-2 vaccination could, just as vaccines have put an end to measles, chickenpox, hepatitis and other viral illnesses, help put an end to fibromyalgia. A vaccine, by the way, could also potentially help some people who already have fibromyalgia much like the shingles vaccine helps people with Varicella Zoster reactivation.

The First Trial

“We didn’t get a 60-70% efficacy, because it wasn’t our ideal dose and a lot of patients had other conditions they couldn’t get fixed in a trial like that.”

If you’ve been following the Pridgen story you’ve probably heard of people who’ve tried the Famvir/Celebrex combination who’ve done well and others who haven’t. Pridgen addressed the variability in results in his protocol by asserting that the doses aren’t set and that many of the participants had more than fibromyalgia to deal with.

The trial was less restrictive than most other phase 2 (FDA approved) FM trials where men or people with severe depression weren’t allowed to enroll. He said they pretty much let everybody with FM in.

He also stated that if the patients failed to commit to fixing the secondary problems they didn’t do as well. The FDA also required only one dose be used in the trial – and that dose was not their “favorite” one.

Fifty-three percent of the patients in the trial had at least a thirty percent reduction in pain. That’s a good but not great figure, but Pridgen noted that almost forty percent had at least a fifty percent reduction in pain – and that’s a very good figure for FM. Already their stats, he stated, may prove to be better than the three FDA approved drugs for FM – and he hasn’t been able to use the dose he ultimately intends to market. He stated that some of the world class experts on IMC’s scientific advisory board have said they had “never seen pain data like this” for FM before.

The Next Trials

The next phase three trials, though, will be slightly more selective as the fibromyalgia patients will not have as many “extra conditions”.

It’s going to take time to raise the money and then do two phase III trials – which can be run side by side. While there may be one dose that works best for the most people, Pridgen asserted that no dose is perfect for this variable population and they’ll probably do a dose-ranging study to get at the variability.

They’re trying to get FDA to fast-track the next trials. My guess is that patient enrollment will not be a problem; they expected it to take nine months to enroll the last study and they did it in three.

When asked how the phase three trials are coming Pridgen stated, “We’re moving as fast as we can….This is not an easy process.”

Confident

“I feel very confident that the next two trials will be far more impressive”.

Dr. Pridgen appears to be utterly confident he’s on the right track. He said he’s seen a 1,000 plus FM patients and an equal number of chronic fatigue patients.

recovery from fibromyalgia

Prigen asserts many people have gotten well using his protocol.

“If a patient does what we tell them to do and they jump through the appropriate hoops it’s unbelievable what happens to these people – they do so much better” Skip Pridgen

When the Blue Ribbon Project came to Tuscaloosa, it was the only place, he said, they saw people getting better.

He said he’s seen “countless” patients get well and go on with their lives, including very ill patients.  “I’ve had some tremendously ill patients who get their life back….get back to working again.”

They come from all over. He gets the protocol started and then refers them back to their physicians. His Canadian and Australian  patients have a good chance of continuing with the protocol because their physicians are more open minded, but the Brits often run into a wall so unless they can cross the Atlantic, presently they are receiving little support from their own medical profession.

Dr. Pridgen Talks

When do you expect the study to be published?

Dr. Carol Duffy is feverishly working on the manuscript and should be submitting it for publication this summer, hopefully in one of the premier pain journals.

How did you, a surgeon, end up treating people with gut problems?

Many general surgeons perform endoscopies in their practice of medicine.

How did you get the idea to combine the antiviral with an anti-inflammatory?

I was merely giving them a NSAID for their joint pains, and serendipitously noticed the two drugs when combined had unexpected benefits. I’d never heard of anti-inflammatories used to hit viruses before. Virologists have known for two decades, though, that NSAID had antiviral properties.

You presented a very different model of fibromyalgia at the Rheumatology Conference than rheumatologist are used to. I don’t know if anyone has looked at fibromyalgia as a herpesvirus disorder let alone treated people with antivirals. What kind of reception did your talk receive?

Lot’s of questions, none too difficult to answer and generally it was well received even if the attendance was not ideal.

neurons

Pridgen and Duffy believe three sites in the body may be particularly affected in fibromyalgia: the gut, the vagus nerve and the sinus area

I know someone who couldn’t tolerate the Famvir but did very well on Celebrex for six months when everything fell apart again.

There are other options, and if his physician had reached out to me, I would have given the physician everything they needed to help that patient.

What can you say about the gut tissue biopsy results?

The preliminary data was presented a little over a year ago at an international virology meeting, and for patients who have FM 100% of those patients have HSV-1 data in their biopsies and 80% have a protein that is found only in cells that are actively infected with HSV-1.

If HSV-1 is found in the guts of FM patients is it your guess that it’s probably reactivating elsewhere?

The vagus nerve is the nerve that controls the gut and the virus lives in its ganglion. We postulate that there are two other major sites, the sinuses, and the urinary bladder, that are also likely sites of chronic reactivation.

If it’s active in the gut would you expect to see an increased incidence of cold sores in FM?

Approximately 30% of the population suffers from cold sores. If you go to the innovativemedconcepts.com site you will be able to watch a couple of video’s that explain this better.

big fibromyalgia studies are next for Pridgen

Has Pridgen cracked at least part of fibromyalgia? Time will tell. The big studies are next…

You tried several different combinations of drugs and Famvir turned out to be the antiviral of choice for the fibromyalgia patients in your study. Do you have any idea why Famvir was more effective than the other drugs?

(Dr. Pridgen said that’s a trade secret for now.)

In your experience are people who improve dramatically able to get off the drugs and maintain their improvement for a considerable amount of time?

Absolutely not! The moment they stop the meds the next time they are severely stressed the condition returns. You can’t stop diabetes, hypertension, and cholesterol medications and you can’t stop these.

What is the timeline for the phase III study or studies?

Plans are underway for the near future.

 

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61 Comments

  • Tim Ollivier

    April 27, 2015 at 10:43 pm - Reply

    Thanks Cort. I thought this protocol had come to a dead end. BTW, how long do you think it will take them to complete the next trial?

    • Cort Johnson

      April 27, 2015 at 10:46 pm - Reply

      They are moving forward as fast as they can. I think it’s going to take awhile though. They need to do two big trials. My guess, without knowing anything really except that everything takes so darn long – would be the trials starting and hopefully ending in 2016.

  • R.A.Perill

    April 28, 2015 at 12:14 am - Reply

    EBV wasn’t mentioned? Many of us have EBV titers through the roof!

  • Cort Johnson

    April 28, 2015 at 1:08 am - Reply

    From the beginning Dr. Pridgen focused on the gut. When he and Carol Duffy biopsied gut tissues they found the other herpes virus not EBV. Perhaps EBV is in other places…

  • steve

    April 28, 2015 at 1:45 am - Reply

    Hope this woks

  • Nichole

    April 28, 2015 at 2:08 am - Reply

    Hi Cort, how would an international fibro sufferer go about enrolling in such a trial? Dr Pridgen mentioned that Australian patients (that’s me!) had a better chance on the drug regime given that the GPs are more open minded. I would love to get involved and possibly regain my life! I recall having been really unwell with a mystery virus at 16. Towards the end of the virus I developed a massive sore on my upper lip. In hindsight, I am confident this was my first brush with HSV.

    Regards
    Nichole

    • Steven

      July 6, 2015 at 12:33 pm - Reply

      Hi Nichole, have you had any luck finding a GP in Australia, that is willing to listen, and consult with Dr. Prigden. I am in Australia also, and have done the rounds of Drs for years. All I need is someone who will listen, and then I believe there will be a bright shinning light at the end of the tunnel.

      • Liam

        April 23, 2017 at 4:57 am - Reply

        Hi Steve, there is a doctor in Adelaide who does the protocol. Email Dr. Pridgen.

        • Steve

          April 23, 2017 at 10:49 pm - Reply

          Hi Liam, that is very promising to hear! Can you email me his/her details. At this point in time I am willing to travel anywhere, to get some help.

  • marylewin

    April 28, 2015 at 3:41 am - Reply

    With all due respect to Dr. Prigden, the researchers that have come the farthest for a cure for herpes virus 1 are Cullen at Duke University and David Bloom at the University of Florida. They are years away from a cure because they cannot secure funding for their research. I think there is evidence there herpes viruses may run in families. What causes fibromyalgia may be many different things. Drug sensitivity syndrome is a particular problem in treating herpes viruses. I would urge people to go to the Cullen lab website and read about his work, his explanation of where things stand and donate to his research as I have.
    I think Cort has a responsibility to inform and educate people about such research.

    • Cort Johnson

      April 28, 2015 at 1:01 pm - Reply

      A responsibility! :)… I can’t inform anyone of anything I don’t know about. This is the first I’ve heard of them and thanks for letting me know.

  • James

    April 28, 2015 at 6:16 am - Reply

    I wanted to let you know your link to the http://innovativemedconcepts.com website in the article is bad. It works fine if you copy and paste the text but not if you click on it.

    From the article it sounds like Dr Pridgen is available to consult with a patient’s doctor? I would be interested in having my doctor contact him to get his protocol and possibly try it.

    • claudia drake

      March 5, 2016 at 10:15 am - Reply

      James, I am curious as to whether you were able to contact Dr. Pridgen about doing the Pridgen Protocol, and if so, what do you think of it? I am considering contacting him. Thanks.

  • alka

    April 28, 2015 at 1:29 pm - Reply

    I have got fm , had shingles and yes iI do get cold sores .my question is do I need a biopsy to confirm that I have got herpes

  • josh

    April 28, 2015 at 5:21 pm - Reply

    hey cort,

    still have a leftover question: does pridgen think it’s possible to have hsv-1 in your gut and not test positive for it on the igg test?

  • Dave

    April 28, 2015 at 5:30 pm - Reply

    Cort, thank you for some hope. I was wondering if when the site CFS does that
    include a subset that has OI and PEM without pain or other symptoms?

    • Cort Johnson

      April 28, 2015 at 5:59 pm - Reply

      Absolutely there is an ME/CFS subset that has PEM and weakness but not pain.

      • Cort Johnson

        April 29, 2015 at 4:23 pm - Reply

        I guess just show him the articles and the abstract from the conference. Or if you actually see Dr. Pridgen you could start off there and hopefully continue with your doctor.

  • Jessica

    April 29, 2015 at 8:51 am - Reply

    Hello Cory, how would I go about getting this information to my doctor. I would like to try this medication but it sounds like a different than normal doses. And, does the herpes vaccination help? Thank you for your time and this information.

  • Sheila

    April 29, 2015 at 10:56 am - Reply

    When I read about Dr. Pridgen last year I convinced my doc to give me some Celebrex to mix in with the anti-virals that I was already on. I did not see anything happen, bas also concerned with Celebrex side effects, which cold cause leaky valves. I discontinued to soon. Just don’t think I is a safe protocol.

    • claudia drake

      March 5, 2016 at 10:17 am - Reply

      Sheila, Were you able to contact Dr. Pridgen and get information on the whole protocol? How are you doing now?

  • Marline

    April 29, 2015 at 8:42 pm - Reply

    A fascinating post, Cort! I have read Total Recovery by Gary Kaplan in which antiviral drugs are mentioned as something that can downregulate the microglia. The theory being that it is the hyperexcited microglia that cause the majority of pain in a condition such as fibromyalgia. The antiviral drugs are not necessarily working by counteracting a virus. Also, isn’t HSV-1 a very common infection? I read that 90% of the population is infected with it. If it is a cause, there must be another factor, perhaps genetic that predisposes the person to develop fibromyalgia.

    • Cort Johnson

      April 29, 2015 at 8:44 pm - Reply

      Thanks Marlene. Yes, the microglial effects of some of these drugs provide another angle…It’s interesting stuff :).

  • Julie

    May 6, 2015 at 1:38 pm - Reply

    I have followed Dr. Pridgen’s work for some time now. I was already on Celebrex for arthritis and didn’t see any improvement. when I mentioned the antivirals to my doctor, she prescribed Valtrex in addition to the Celebrex. Within 12 hours (I took my first dose at bedtime), I improved so significantly (my FM) I was elated. The improvement did not last but there was something going on. I had had a similar response when I first began LDN years ago. When Pridgen’s Phase II results revealed the use of Famcilovir, my doctor was willing to switch me to that. Again, I saw huge improvement. This time, it lasted 4 days. I had greater difficulty with compliance with Famcilovir since the dosing is three times a day. I don’t think my dosing is at the right level yet and my insurance company is giving me and my doctor difficulty over covering Famciclovir. They will cover Valtrex but not Famciclovir. Would love to know how other patients dealt with insurance coverage for antvirals!

    • claudia drake

      March 5, 2016 at 10:20 am - Reply

      Julie, I am curious as to whether you are still on the Pridgen Protocol and whether how you are doing? I am considering it. Thanks, Claudia

  • Donna

    May 18, 2015 at 9:40 am - Reply

    Interesting! For me, a cold sore is a clear indicator that I need to stop everything I’m doing and baby myself. They always seem to be triggered by a very stressful event in my life. Sometimes I’ll think that I’m handling a stressful event well emotionally but my physical body doesn’t get the message.

    • Ann

      May 23, 2015 at 3:59 pm - Reply

      Donna Are you refering to emotional stress? My cold sores start after a toxic exposure. After a visit to the dentist I will develop a sore. A large fire burned for a few days near my house. I developed sours all over my mouth. After buying a lap top computer that had been sprayed with some form of chemical I developed sores around and in my mouth. The list could go on and on.

  • Tim

    May 22, 2015 at 9:03 pm - Reply

    Hi Cort. How does Dr P explain the high occurrence of FM in women. HSV-1 does not discriminate. This is something that I would be very interested to know. Have you ever heard any explanation for this??

    • Merida

      June 1, 2015 at 12:31 am - Reply

      You make a very important point, Tim. I have thought for years that the predominance of FM in women is related to a wide, inherently more unstable sacrum/pelvis – which may also predisposed to scoliosis. The scoliosis affects the neck and various nerve roots through out the entire spine. I expect that some of these nerve roots alone, or in combination with vertebral artery syndrome ( from neck torque) influences the immune system and/or the blood/brain barrier.

  • Ann

    May 23, 2015 at 4:11 pm - Reply

    Hello Cort I have spent 40 years trying to get to the bottom of my problem. It would a book to explain. Recently I was given an IV of thiamine. I am now taking 100mg 3x per week. I am remembering that as a child I was given two smallpox vaccinations. I am wondering if the vaccinia virus could be involved. Do you have any thoughts about this?

    • Tamara

      April 15, 2016 at 3:43 am - Reply

      Ann
      It was a yr ago you posted but on the chance you receive alerts to your post; I was also vaccinated for Smallpox twice. Once per routine immunization schedule, and the second time at the age of 15. The reason for the second vaccination was an attempt to suppress frequent outbreaks of Herpes Simplex or cold sores.
      My MD stated the revaccination for Smallpox had shown to help reduce Herpes Simplex outbreaks/flare ups. I had a significant improvement by way of reduced outbreaks following the 2nd SP immunization.
      However, after reading everything I can find surrounding Dr Pridgen’s findings, and the Herpes Simplex Virus connection I am having EUREKA moments and am excited for the possibilities!!
      I have battled fatigue since childhood, and was diagnosed with Fibromyalgia 10 yrs following a horrific automobile accident that occurred when I was 22 yrs old. I don’t believe the vaccination inflicted anything. I strongly believe I was already afflicted with the HSV.
      I am curious why you received your 2nd Smallpox vaccine and if you has any correlated symptoms prior to receiving the vaccine.

      I am facinated and excited at the discoveries Dr Pridgen has made!
      Be well-

      • ann

        April 17, 2016 at 7:59 pm - Reply

        Tamara I was given the second vaccination because the first one did not “take”. I was six years old but I believe that meant that the first one did not scab over and leave a scar. Over the years I have pursued every clue. I have finally arrived at a treatment that I feel is working. I have never felt better in my life. If you are interested I will be happy to re-post some of my past posts. I get a notice by e-mail when someone submittes a post or reply. One specialist that I have consulted was Infestious Disease. Every test was negative. No virus.

  • Lona Collins

    June 7, 2015 at 5:55 am - Reply

    Some years ago, Easter Seals held a conference around 1991-93. On Fibromyalgia, by the Arthritis Foundation. The guest speaker at a conference in Salt Lake City was Dr. Byron Hyde. He had a very good hypothesis about Post-Polio virus. He noted a huge up-rising in 1988-89. FM patients who took the live vaccine in the 60’s seemed to come down with FMS. I found his research to be quite compelling, as I was one of those kids who had the live vaccine. I made sure both my kids got the None-live vaccine, as I am always fearful they may have a predisposition to ME/CFS & Fibro. My 21 yr old son has ADHD and Cognitive problems, unable to hold down a job. Dr. Byron Hyde is still an active participant. Cort may know more about him. I’m sure you can pull him up on the web. Speaking of Vaccines? Two yrs ago I got a flu-shot. I was very Ill for months, a few days after the shot. It seemed to reactivate my symptoms like Mono. I had a very severe case of EBV & Hep A at age 17. Hospitalized for a month. Taking a year to fully recover, but never quite the same. This yr I had no flu Vaccine & didn’t get sick. Vaccines are a great concern to those with weekend immune systems. I feel they introduce another virus for the body to fight against. I hope this helps.

  • Aimera Marvin

    July 24, 2015 at 8:17 am - Reply

    There is currently no cure for Herpes Simplex virus. Treatment focuses on getting rid of sores and limiting outbreaks.
    It is possible that your sores will disappear without treatment. However, your doctor may determine that you need one or more of the following medications:
    acyclovir
    famciclovir
    valacyclovir
    These medications can help infected individuals reduce the risk of spreading the virus to other people. The medications also help to lower the intensity and frequency of outbreaks. These medications may come in oral (pill) form, or may be applied as a cream. For severe outbreaks, these medications may also be administered by injection.
    But there are herbal therapies that could totally eradication this virus from the body, meanwhile there has been proofs and lot of testimonies to that effect. I took my time to investigate one Dr. Oduduwa on how his herbs has cured my friend who contacted this embarrassing virus. Here are his contacts; email: oduduwahealingnetwork@gmail.com; phone: +1615-541-2872. Don’t hesitate to contact him if you are infected or know a friend who is currently suffering from herpes.

  • Gainor Hillegass

    October 10, 2015 at 8:45 pm - Reply

    I am a 70 year old female diagnosed with fibromyalgia, 25 years ago, Hypothyroidism, 20 years ago, Adrenal fatigue and herpes virus flares, about 5 years ago. All these involve pain and fatigue, but migrating mouth ulcers for 3 days, followed by stiff neck on day 4, then all over pain on day 5 follow the herpes virtue pattern. I am on day 7 of one now and expect it to subside soon unless a stressor keeps it going. I have been taking celebrex and famciclovir for over a year and have partial symptom relief, but still spend several days in bed per flare, and I get mood swings, irritability, anxiety, and depression bouts with it. My immunologist prescribed Famciclovir to take 30 days, then off until next flare. I usually have one within 2 weeks. Celebrex helps my arthritis pain and I can’t do without it. It is easier on the stomach than other NSAIDS. I was surprised to learn here that it has antiviral properties. I’ll keep watching these trials to determine the correct dosage of Celebrex and Famciclovir.. I have read all of your comments with great interest and plan to follow the progress of the trials. I wish I all of you improvement in your symptoms.

  • karen

    October 26, 2015 at 2:43 pm - Reply

    My 4 decades with HSV-II. 1st outbreak (OB) WORST, campho phenique & vapor rub. I did go to my dr who dx genital herpes the library reading all i could glaring was Contagious & NO CURE. I would put HSV-II on medical history forms, I had 2 C-SECTNS due to HSV-II. Next 8-10yrs a few minor outbreaks,unexpected frequent urination 3-5x hr a lot of regular “P” no pain or burning last 2-3hrs still have this. Traveling tender area’s on same side as HSV-II 1st OB. I had been told about an antiviral drug that might help shorten MY stealth OB. Tissue minor bump,insect bite,scratch to physical movement work,exercising, sun exposure not knowing if & how my body would respond. My OBGYN prescribed an antiviral which helps reduce time of OB. After many drs & meds dx 03 FM

  • Will J

    November 11, 2015 at 9:57 pm - Reply

    Going to try the famvir, but insurance won’t cover celebrex. Trying to get it approved, but just in case, are there any other meds to replace celebrex?

  • Michèle

    November 20, 2015 at 10:47 am - Reply

    Hey everyone,
    Does anybody know what the state of affairs is? I`m from Switzerland, and doctors here don`t do any research at all.
    It`s irresponsible. For many years I have been labelled as a “psychosomatic” – they said go to the shrink, take antidepressant, it`s all on your mind. I totally agree with the fact that a sad mind causes chaos in the cells, and then the cells respond with “physical illness”, but concerning my soul-stuff, I can REALLY say I`m over the hump. I love life. And I`m happy where I stand. Just to give a hint, I`m adopted and was already sick at birth. I had to deal with a lot of chronical inflammations, infections, viruses………… EBV as well, and so on. I have been into rheumatological care for nearly 2 years now. I found my biological mother in 2014 (at my 24th birthday by the way) – at the beginning of January (before meeting her) I had a gout-similar attack, why I considered to see a rheumatologist. She (and lots of other family members) suffers from arthrosis; besides she has the human-papillomavirus, which brings her wart-tumours predominantly in her feet and hands. However – so far no inflammatory markers could be found, why no extra-test are being made. What is your experience? Could you give me any advice for differential diagnosis? i mean there is a bloody lot of mixing-up opportunities….
    Keep ur heads up! Would love to hear from you.

    Best wishes,
    M.

  • Catherine

    December 25, 2015 at 8:50 pm - Reply

    Doesn’t sound encouraging to me at all.

    “In your experience are people who improve dramatically able to get off the drugs and maintain their improvement for a considerable amount of time?
    Absolutely not! The moment they stop the meds the next time they are severely stressed the condition returns.”

    Great. Another bandaid attempt to TEMPORARILY suppress symptoms. And no mention of the affects of NSAIDS like celebrex on joints, tendons, etc..

    • Ann Swartz

      December 26, 2015 at 9:06 pm - Reply

      First of all, Fibromyalgia is just a list of symptoms of a larger disease.
      Get a DNA test labeled Detoxigenomic. You will probably find that a gene is missing or it is referred to as absent (GSTM1).This gene is responsible for producing glutathione which is needed to detox the liver.
      As someone who has suffered a lifetime and has spent the last 40 years trying to understand this disease, I have written a short description of this disease and how it progresses over the years. I recently learned of Dr .Mark Hyman, who also is missing (GSTM1). Go to his sites and you will learn what to do in order to get your body to make glutathione.

      This disease is about toxicity. This disease began at birth. The severity of this disease depends on the environment you’ve been surrounded by all your life. I grew up on a farm where I was exposed to many toxic chemicals. At that time DDT was still being used and our house was sprayed for mosquitoes and flies. Our house was heated by wood burning stove. Most of the male members in my family smoked or used some form of tobacco.

      As early as I can remember I ached all over, always felt like I had the flu, stomach distress and I cried a lot.
      During my early teens or preteens I developed a humpback. At one point I was advised by a doctor to do some exercises. It was far too painful to stretch. I believe that early on I developed myofascial damage. I now know that the places that were causing all my problems was in the myofascial.. It was becoming inflamed and swollen due to excess toxicity that I was not able to eliminate due to my missing gene. As the years went on the damage became entrenched and using these particular muscles interfered with my nerves, especially the Vegas nerve.

      For about 40 years the research has been looking for a virus or an infection. Neither of the two is present. The hardened, glued together myofascial pulls on the Vegas nerve causing nausea, headache, excessive heat or excessive cold, rise or drop in the blood pressure, dizziness, pain and fatigue and more—. This is what is being called fibromyalgia.

      My neurological problems were triggered when the harden, glued together myofascial was triggered either by using this muscle are by exposure to a chemical that in turn put pressure on the myofascial and triggered a response in my head.

      Encephalopathy came about by the inflammation in my head and the brain problem I experienced—- headaches, feeling of pressure my head, spacey and dizzy, unsteady gait, halted speech, delayed ability to think of words when I need them and others was caused by putting pressure on the fascia and having it refer to my head and behind my eyes, especially right side of head.

      I am not sure yet where the epicenter or the beginning point of the myofascial damage started. I think it is someplace around my right side possibly near the liver are at the point of my right shoulder blade. I also believe there’s a possibility of Wernick’s encephalopathy without having consumed alcohol. The retention of excess toxins in the myofascial may have the same effects as alcohol. I started taking 1/2 ounce liquid thiamine about six months ago and I no longer have to take anything for pain.

      • Catherine

        December 27, 2015 at 2:13 am - Reply

        Thanks Ann. I agree completely.

        I haven’t had the testing you described, but unfortunately did the limited Yasko testing which was much more expensive and only tested about 20 ‘mutations’ several years ago. Is Detoxigenomic different than 23&me? Or would 23&me test for the GSTM1 mutation? I’m guessing it does, but would be interested in your reply.

        A WE-type encephalopathy can definitely be caused by things other than alcohol — any sort of compounds, maybe even a high carb diet — could deplete thiamine enough to cause huge problems. That’s great to hear you’re doing better.

        Where did you find the liquid thiamine, and hoe much do you take? Also am curious if you’ve tried any of the new liposomal glutathiones?

        Thanks again.

        • Ann Swartz

          December 27, 2015 at 8:28 pm - Reply

          First, your question about the detoxi genomic profile. I don’t know about the particular test that you mentioned. I don’t see it on the ANALYTD list. You can contact Genova diagnostics, which is located at 63 Ziillicoa Street Asheville, NC 28801— telephone number is 1-800-522-4762.
          When I learned about this test I took it to a doctor that I have been using as a sounding board for about 10 years. I would see him every 4 months and we would discuss this disease. A few times he would roll his eyes at me, but now he is telling me that I am brillant. You can take this test to your doctor and ask to have the detoxi genomic profile. The doctor will need to sign up with the lab and fill out the paperwork the lab will send to him. They will check his medical license. When this is done they will send the test kit to the doctor or to you. You take it to your local lab to have the blood drawn. When I had this test done it cost me $489 . The lab will not tell you how much it will cost because what one doctor charges can be different from the amount another charges. It was the most valuable $489 that I ever spent. For years I listened to—there is no scientific proof, no test to prove this. psychosomatic—psychosomatic .

          Your question about how much thaimine– when I learned about Wernicke’s encephalopathy and that it exactly fit a lot of my symptoms. I asked my doctor about an IV he was a little skeptical, but he usually goes along with me when I ask for something. My basic problem all these years is that I have not been able to take any of the supplements or pills or whatever that’s been suggested for this disease. He gave me the IV at the hospital. I felt really badly the next day. But a day later I could hardly believe how well I felt. I called him and told him that I wanted to continue to do it, and he suggested that I try to find another source for it because he couldn’t justify giving it to me in an IV. I searched the Internet and finally found a place in the UK that has been approved by the United States FDA and that their items seemed quite pure. I ordered the liquid thiamine. The amount that my doctor gave me initially was 100 mg so about 1/2 ounce of the liquid is approximately equal to 100 mg. if I have a problem where I have been exposed to something that’s causing me problems I will take it twice a day but I don’t think taking it more often is any more beneficial than taking 100mg, but then as you know we are all very individual. http://www.metabolics.com
          Your question about the liposomal glutathione When I first learned about the test results I tried it from a health food store. I could not take it. I have since ordered L-glutathione in reduced form from the metabolic’s lab. I’ve been able to take it but I will quote Dr. Hyman and maybe you can benefit from this—“One would think it would be easy just to take glutathione as a pill, but the body digests protein — so you wouldn’t get the benefits if you did it this way. However, the production and recycling of glutathione in the body requires many different nutrients and you CAN take these. Here are the main supplements that need to be taken consistently to boost glutathione. Besides taking a multivitamin and fish oil, supporting my glutathione levels with these supplements is the most important thing I do every day for my personal health. http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html
          I am still having trouble taking anything, but I I take it when I can. If I start to react to a supplement then I will skip some days. I do however take the thiamine every day. I have been able to take thaimine without any problems. I ordered magnesium from metabolic’s, but I have never been able to take the magnesium so you just have to do trial and error. See what your body will accept and what it won’t. Sometimes your boby will accept one thing and then you can go back and try the other again and and you can do it. It all depends on your level of toxicity.
          Good luck and best wishes. If anyone would like to contact me E-mail address swartzanderson@aol.com

          • Catherine

            December 30, 2015 at 7:21 am -

            Hi Ann,

            Thanks for your detailed reply, I appreciate it.

            23&me is a genetic testing company and it looks like they do test for the GSTM1 mutations, at least according to this page:

            http://drfairchild.blogspot.com/p/23andme.html

            Their test is a lot cheaper — I think it’s $199 (used to be $99 for awhile). Interesting that Hyman doesn’t believe the liposomal glutathione works, but I’ll check out what he has to say. It’s my understanding that it doesn’t get digested in the same way other things do because of it’s liposomal encapsulation — not sure if that’s the right word.

            I’ve been doing thiamine injections, but not every day as I can’t afford them. But they do help. I also have that same brand of liquid thiamine, but it’s such a low dose — only about 500 milligrams of thiamine in the entire 100ml bottle. Still it’s nice that it’s available in a conezymated form.

            Charles Weber has hypothesized that thiamine, potassium and magnesium affect one another, so it’s possible that the thiamine deficiency is preventing you from being able to tolerate magnesium. I can’t tolerate magnesium either — it actually increases cramping and muscle twitching for me.

            Here’s his article:

            http://charles_w.tripod.com/kandthiamin.html

            Thanks again for your reply. I just may email you soon.

          • Ann

            December 30, 2015 at 10:58 pm -

            Thank you for your reply. I will look forward to your e-mail.

  • Sherri

    March 17, 2016 at 2:10 pm - Reply

    Interested in updates on this topic.

    • Ja ob Teitelbaum

      April 2, 2016 at 12:57 am - Reply

      The Low dose naltrexone also helps the microglial activation

  • Richard

    March 28, 2016 at 11:13 am - Reply

    Having suffered from FM for 25 years I was keen to try this. I told the doc all about this protocol and the fact that FM is supposed to be caused by HSV1. I asked him to prescribe Celebrex, Famicyclovir and Nortriptylene. Six weeks now and I haven’t felt better in decades. Most of the dysesthesia, allodynia and paresthesia is simply gone. Sleeping much better and anxiety levels also show a vast improvement. Still have slightly numb feet and Achilles tendinitis, mild carpel tunnel syndrome, morning/ sitting stiffness. Uveitis better as well. Headaches gone.

    At the same time we did a viral panel: HSV 1, 2, B19, CMV, HHV6 and EBV. All IgM negative/ not detected. All IgG negative/ not detected except HHV6. The test did not distinguish between HHV6 A and B. Why is the medication effective yet I have never been infected with HSV? what’s going on?

  • Jacob Teitelbaum MD

    April 2, 2016 at 1:15 am - Reply

    we have also been using Valcyte and Famvir with a select group of our patients with variable results. In some they are excellent, but often will trigger significant Herxheimer/flaring of symptoms initially. I would be interested in what dosing of Famvir people have found to be most effective when combined with the Celebrex, and also whether they could get by with the hundred milligrams twice a day of Celebrex instead of the 200 mg twice a day, as many people to get stomach irritation from the Celebrex. We have also found that it is critical to also treat with the rest of the SHINE protocol (sleep, hormones, infections, nutrition, exercise as able) for people to have the best chance of improving. Please let me know what your experience has been with the antivirals, which one was used, the dosing, and how long it took to see the effect. Happy to share our experience with thousands of people with CFS/FMS as well

    • Cort Johnson

      April 2, 2016 at 6:18 pm - Reply

      Thanks Dr. Teitelbaum.

      In conversation Dr. Pridgen said it was important to co-morbid problems.

  • tiffany

    April 2, 2016 at 3:46 am - Reply

    does anyone have Dr. Prigdens email address? I’d like my doctor to try his protocol. thank you!

  • lauren gordon

    April 26, 2016 at 11:16 am - Reply

    Could someone (Cort?) please advise if there have been any recent updates on the work by Drs Pridgen and Duffy….what are the latest findings regarding using Famvir and Celebrex for IBS, CFS and Fibromyalgia? TIA.

    • Cort Johnson

      May 1, 2016 at 8:23 pm - Reply

      The only updates I know of are that the FDA has given fast-track status to Dr. Pridgen’s drug combo and he is raising money for a large phase III trial in 2017 I believe.

      • Yousufzai

        December 28, 2016 at 10:02 am - Reply

        Hi, I am 65 male from Pakistan. I am having FM type of problem for 5 years. Have tried all sorts of treatment. I have severe muscles stiffness plus aches and pains in Skull, Chest and back and foot soles. My legs muscles are tight and feel heaviness and difficulty in walking. Do you have any advise for me. Thank you

  • Sarah

    May 1, 2016 at 1:23 pm - Reply

    I came across this article and it’s kind of old news to me. I’m kind of shocked. That doctors are just now “discovering” antivirals work to treat fibromyalgia. Dr Dantini in FL ( http://www.4fibromyalgia.com/ ) has been successfully treating it with antivirals for 25 years and if you search the Internet he’s been brought up many times regarding this everytime some Dr thinks this is his or her new breakthrough idea. You also failed to mention the Fm/a blood test that supports that antivirals are the way to treat fibromyalgia. I’m 34 and was successfully treated by this method. I don’t work for Dr Dantini, I was a patient of his and he does phone appts bc he knows many of his patients like myself couldn’t get out of bed to come see him. He will send orders to your local lab to make sure you are a candidate. Or just ask your regular Dr. There are about 200 Dr’s that are already using this method in the US thanks to Dr Dantini and the Fm/a blood test.

    • Cort Johnson

      May 1, 2016 at 8:22 pm - Reply

      Thanks for passing that on Sarah.

    • YOUSUFZAI

      December 28, 2016 at 9:38 am - Reply

      I have FM for the past 5 years. I am in Pakistan and can not afford the expenditures of visit and Dr in USA. Can you pass on the email address of Dr. Dantini to me so that I communicate with him.

      • Cort Johnson

        February 12, 2017 at 7:37 pm - Reply

        If you look up Dr. Dantini on the internet you should be able to get his contact information.

  • lauren gordon

    May 3, 2016 at 3:47 am - Reply

    Thank you Cort and Sarah.

  • Felicia

    July 22, 2016 at 9:18 pm - Reply

    I got diagnosed with fibromyalgia 4 years ago. I got a bad sinus infection a little over and year ago. I had low grade fevers and I developed a huge fever blister. I was put on antibiotics and Valrrex. I felt great while on these meds. I do hope this trial is sucessful. I’ve been on the FDA approved drugs for FMS and had bad reactions to al3. I now have hope!
    In

    • ann

      August 7, 2016 at 2:39 pm - Reply

      Felicia In regard to sinus infection–check for and treat yeast infection. As for the blisters –can be caused by chemical exposure or what we now consider everyday items. I recently bought a new refrigerator. I got blisters on my lips from the lubricant on the gaskets. The chemical is now gone and the blisters are healing.

  • sandra

    August 12, 2016 at 9:06 am - Reply

    HI , can acyclovir be used in place of famvir , for fibromyalgia , and if so, what is the dosage and duration , ?thank you

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