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Drug Combo in Pridgen Antiviral Fibromyalgia Trial Identified – Some Results Available

A lengthy article originating on the University of Alabama website and an  abstract presented to the American College of Rheumatology Conference indicates that the two drugs Dr. William “Skip” Pridgen and virologist Carol Duffy PhD used in their Fibromyalgia antiviral trial were Famciclovir, better known as Famvir and Celexicob, best known as Celebrex.

The report also indicates that  Duffy found only herpes simplex – 1 viruses (HSV-1) in the gastrointestinal tissues of the FM patients. Neither of these drugs nor this type of herpes virus have been commonly used or associated with chronic fatigue syndrome.

HSV-1

Duffy found only herpes simplex-1 viruses in the gut tissues of FM patients

We also learned Pridgen discovered the two drug combo similar to the way Fluge/Mella uncovered Rituximab in chronic fatigue syndrome – by observation. Suspecting that herpes viruses might be to blame for the gastrointestinal issues in his patients, Pridgen started them off on Famvir.  The drug helped but symptoms remained.

After Pridgen noticed much greater improvement in the symptoms of the patients also put on Celebrex for their arthritis he combined the two drugs – for everyone.

In the University of Alabama article, Duffy reported the improvement on the two drug combo was immense.

““The patients who took both drugs, however, came back and said everything was better. Their fibromyalgia was gone. Their chronic fatigue was gone. Their headaches were gone. All of these things had cleared up. When the first few patients approached him, he thought it was a fluke, but as more and more and more patients said the same thing, he knew it couldn’t be a coincidence.”

The Triad

That drug combo never been used in herpes virus infected patients before, but it made sense to Duffy. She knew that some herpes viruses  increase the production of COX-2, a pro- inflammatory enzyme. While Famvir stopped the herpes viruses from replicating, Celebrex weakened the viruses, making them “unstable”.  Since Celebrex also has some antiviral properties, the drug combo hit the virus in three ways.

Famvir

Famvir

Famvir – rarely mentioned in ME/CFS – was the antiviral of choice for Pridgen

Valtrex, Valcyte and Vistide are often used to treat herpesvirus infections in chronic fatigue syndrome but Famvir is rarely mentioned. (Dr. Dantini appears to use Famvir frequently to treat his ME/CFS/FM patients.)

One of the reasons may be that Famvir is mostly used to treat herpes virus infections such as herpes simplex virus, herpes simplex virus 2 (genital herpes) and herpes labialis that have not been typically associated with ME/CFS.

The Newcomer – Herpes Simplex

Duffy scoured the gastrointestinal tissues of 45 patients for a virus. In the end it wasn’t EBV, cytomegalovirus or HHV-6 that showed up, but herpes simplex virus-1 (HSV-1) – the very virus she’s been studying in her lab.  (That’s a little scary, but a technique called immunoblotting was used to ensure contamination had not occurred.)

Herpes simplex virus is best known for its ability to cause cold sores and genital herpes, but according to a Wikipedia article can also cause  herpetic whitlowherpes gladiatorumocular herpes, cerebral herpes infection encephalitisMollaret’s meningitisneonatal herpes, and possibly Bell’s palsy.

HSV-1

The group believes HSV-1 could be affecting many different tissues in FM and other disorders

HSV-1 can infect various organs in the body including the peripheral and central nervous systems, upper respiratory tract, and gastrointestinal tract. It may play a major role in Alzheimer’s. It’s able to deplete mitochondrial DNA. One article suggests herpes simplex virus may be better adapted to take advantage of poorly functioning natural killer cells than any other herpes virus.

The group believes HSV-1 may be responsible for fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome and perhaps other disorders. A video on the Innovative Med Concepts website indicates the virus can attack the facial, gastrointestinal and pelvic regions and that it ultimately takes up residence in the vagus nerve.

It took Pridgen and Duffy about a year to raise the $4 million dollars for the 100 person plus phase II trial to assess the drug combo’s efficacy and safety.  Along the way they enrolled a member of the drug team that brought Savella to market in FM, and a past president of Pfizer in their effort at Innovative Med Concepts.  Noted FM researcher Daniel Clauw joined their advisory board.

Conference Abstract Provides Results

An abstract presented at the ACR conference yesterday suggested the drug combo produced strong improvement in some measures and not as strong improvement in others. The changes in pain using the revised Fibromyalgia Impact Form appeared impressive (p< 001) as did changes in function and symptoms (p<.004) and overall impact (p<.003). Fatigue was significantly improved but less so (p<.02).

stop-pain

Changes in pain were impressive. Fatigue was improved but not as much

However, only 33% of patients (vs 19% of those not on it) met the criteria for a secondary measure called the  Global Impression of Change Scale which asked about changes in a person’s activity, limitation, symptoms, emotions and quality of life. It‘s not clear how to parse the more impressive results in some of the tests with less impressive results in the last one.

The drug combination was judged very safe with more adverse events found in the placebo group than in the patients taking the drug.

Improving Efficacy Efforts Underway

If the trial wasn’t a complete win it nevertheless produced significant improvements in a notoriously difficult to treat illness.  Since fibromyalgia, like chronic fatigue syndrome, is believed to be a quite heterogeneous illness asking any drug or drug combo to be effective in everyone is unrealistic.

Phase III Trial Will Tell the Tale

tablets

Finding the optimum dose will be a key aim of the big trial

Designed to  assess basic aspects of efficacy and safety, Phase II trials are not the last word in efficacy. As the Pridgen/Duffey team proceeds to the Phase III trial  they’re exploring several ways to bump up efficacy. Duffy is working on diagnostic tests to identify which FM patients are most likely to benefit from the combo, and is doing toxicology tests to determine if higher doses are feasible. The optimum doses of the drug combo will also be determined in the Phase III trial. Expect efficacy rates to rise.

Big Trial Ahead

Next up is the big third phase trial – a jaw dropping $50-100 million trial the FDA needs in order to approve the drug combo for the treatment of fibromyalgia.

No one is satisfied with the state of fibromyalgia treatment – and few have looked to the immune system or to pathogens. If the results of this trial are not breathtaking – they are still very good –  and will hopefully improve as the therapy becomes better targeted.  They should begin to prompt a revaluation of what’s going on FM.

The publication of the study is probably just around the corner….

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137 Comments

  • lynne

    November 18, 2014 at 11:03 pm - Reply

    Very intriquing. HSV1 theory. Takes up resident in the vagus nerve; can affect the central nervous system. Seems promising.

    • Cort Johnson

      November 19, 2014 at 8:32 pm - Reply

      ! There’s the vagus nerve again. If you have time check out the video on their site.

      • Cort Johnson

        November 20, 2014 at 7:12 pm - Reply

        You have to wait for the right screen to show up to click on the video I think.

  • Esther Siebert

    November 19, 2014 at 12:00 am - Reply

    This is fascinating to me since I’ve had Herpes Simplex 1 infections in my eye (as well as fever blisters in the past) for fifty years now and had a major outbreak in my eye in the last year that coincided with more ME and Fibromyalgia symptoms. Plus I’ve been under treatment for 3 years now with Xifaxan for SIBO. It never occurred to me that I could have HSV 1 in my gastro system as well. It makes me wonder whether it would be better to take Famvir instead of the Valtrex I’m currently on.

    It feels like a lot of puzzle pieces coming together…

    • Cort Johnson

      November 19, 2014 at 8:12 pm - Reply

      I mean to ask Dr. Pridgen if he believes given the HSV-1 found in the gut if it’s likely it’s elsewhere and is causing symptoms elsewhere. I’m also going to try and find out why Famvir turned out to the drug of choice. I believe several different combinations were tried.

  • marcie myers

    November 19, 2014 at 12:01 am - Reply

    Think I remember reading in one of your earlier articles about this study that Celebrex has antiviral properties as well.

    • Cort Johnson

      November 19, 2014 at 8:10 pm - Reply

      Yes, what they are I don’t know but apparently it odes.

  • Lorraine Calvert

    November 19, 2014 at 1:57 am - Reply

    This is very good news and makes perfect sense. I too have suffered from HSV1 since the age of 13. on my lips and in my nose. Celebrex is a drug that I have bad feelings about but I do know it works very well as an anti-inflammatory, same as Vioxx by Merck. because I’m on warfarin I’m wondering if I would be able to take Celebrex. Regardless I can see how these three drugs together could really help with the pain of FMS. I, like many people I’m sure, want to be on of the people in your study. I have plenty of gut issues and would love to know if my gi tract held the herpes virus.
    My thanks for the work you are doing!

  • shakota

    November 19, 2014 at 3:57 am - Reply

    Was this a double-blind placebo-controlled study?

  • MareeC

    November 19, 2014 at 4:14 am - Reply

    Thanks Cort. I and my two children stayed ill two years ago after a virus and have since been diagnosed with CFS. After about 6 months I started getting constant cold sores and my Infectious diseases specialist, who was drawing blanks with finding a cause for our illness said, ‘well, at least we can do something about that’ and put me on Valtrex. And it does stop the cold sores (if I forget to take it for a couple of days, I get a cold sore) – and it does seem to improve other symptoms too. I don’t think HSV-1 can be the whole story (at least not in our cases) but maybe whatever is at the root of the illness makes the herpes simplex virus more aggressive and having that active infection makes symptoms worse.

    The fact that HHV-6 etc weren’t found in the gastrointestinal tissues – does that mean those viruses (or perhaps other viruses that might be controlled by these drugs) were not present elsewhere in the people in this trial? If not, perhaps part of the benefit from the treatment might come from the control of these other viruses?

    • Cort Johnson

      November 19, 2014 at 8:31 pm - Reply

      There may be some dissension regarding the herpesvirus results – we’ll have to see. The reason I say that is that some proponents of HHV-6’s role assert you have do testing that picks up very, very low levels of the virus and most people don’t do that. We’ll have to see how they went about finding the herpesviruses. There always seems to be some controversy about pathogens :)

      There’s also the immune hole problem. Why did these people get stuck with herpesvirus reactivation while others are able to fight it off. I found it really interesting to read that herpes simplex virus may be able to take more advantage of natural killer dysfunction than the other herpesviruses…

  • Albert Chang

    November 19, 2014 at 4:16 am - Reply

    *Sigh*. This is one of those “I told you so” moments for me, when I presented my situation to 15+ doctors earlier last year, along with my testimony that all my 30 symptoms lowered dramatically after being on Valtrex.

    The very fact that these viruses are latent-residing, and are considered as parasites should have been a warning signal on the mainstream level ages ago.

  • John

    November 19, 2014 at 7:15 am - Reply

    While I think HSV-1 is likely to play a role in my illness, I don’t think it’s the only thing. I started gradually becoming ill around 1996 or so. Over time my health gradually and progressively declined until I was at about 40% health in 2003. In late Fall of 2003 I’m pretty sure I contracted HSV-1. In Spring 2004 I had my first outbreak and within a month my health plummeted to about 15% health, causing me to become housebound. Since then my health has continued to decline to the point now where I feel that I’m literally just about dead due to chronic sleep deprivation. I sure hope they can work this thing out.

    • Cort Johnson

      November 19, 2014 at 8:21 pm - Reply

      Good luck John!

      I agree that FM, like ME/CFS is very complex. I imagine there are many contributing factors. I sincerely hope Dr. Duffy’s diagnostic studies work out and she’s able to identify a treatment responsive subset. That would be great news.

      I imagine that there may be so many longterm complications for some patients that even if HSV-1 is their triggering factor I imagine it may take more that removal of the virus to fully reverse the process.

  • Kelline

    November 19, 2014 at 8:23 am - Reply

    Very promising news…recently obtained the Shingles Vaccination and last week had to have a dose of Valtrex for HSV1.. Eagerly awaiting their findings!!

  • Aidan Walsh

    November 19, 2014 at 9:23 am - Reply

    disagree 100% now under Dr. Coimbra for vitamin D3 deficiency reversing thousands in M.S. including auto immune conditions mega doses D3 plus Omega 3 fish oil plus multi vitamins b2 b12 2.5 litres water daily over 10,000 vit D3 stop all dairy foods to avoid Calcium toxicity I am on 50,000 daily now lesions in M.S. gone reversed ‘no toxicities seen whatsover :)

    • Merleyroy

      January 20, 2015 at 11:42 am - Reply

      Hi Aidan, Intrigued about your claim of a cure – tried to look up Dr Coimbra but there is more than one. Those I saw did not appear to treat MS or FM. Full name of doctor, and any more detailed info welcome please.

  • SM

    November 19, 2014 at 1:05 pm - Reply

    No mention of dosages at all except that possibly raising them might raise the efficacy. In the case of Celebrex raising is not possible as it’s a cardio death sentence so perhaps just the anyiviral component at a higher dose then?

    • Cort Johnson

      November 19, 2014 at 6:42 pm - Reply

      We’ll find more about doses used when the study is published and we’ll know optimum doses after the Phase III trials.

  • Vicky Dittfield

    November 19, 2014 at 7:47 pm - Reply

    You have made this M E./Cfs FM sufferer so very very happy.God bless thosr who worked to restore function to thousands.I am desperate to regain mobility and function.I am overjoyed.

  • Mark

    November 19, 2014 at 8:03 pm - Reply

    Hi Cort,

    Ive been following this story since the first trial and I have a bunch of questions which you may or may not have answers to. In the Alabama piece where Carol Duffy is interviewed, she talks about how they biopsied the gastro tissue of 45 Fibro patients. It appears as described in this interview though its not completely clear that Dr Pridgen chose these 45 trial members because he had performed some surgical procedure on them in the past and selected them because they all had Gastro Isssues with these visible ‘red streaks’ in their guts which appear similar to a gastro disease that is not mentioned by name in this interview. What I would love to know is………….the 45 study participants who had their gut tissue biopsied, obviously they all had Fibromyalgia but it also sounds as if they also all had a specific Gut disorder with these red streaks in their digestive tracts, which appear very similar to the red streaks in an unnamed digestive disease and this is why they were chosen to be biopsied, and they were all or atleast some were surgical patients of Dr Pridgen, I would love to know how Pridgen selected these 45 participants who were biopsied? Did they all have specific gut complaints in addition to their Fibro? What is the intestinal disease not mentioned by name which creates these ‘red streaks’ in their digestive tracts and which is associated with a specific bacterium, also not mentioned, which they expected to find in these biopsies of these red patches but only found HSV1 instead. To me this is quite important, the fact that all of these biopsied participants had a specific gut disease/issue/symptomology with red streaks present, looking very similar to an unnamed gastro disease. If you could find out any additional information on this subject I would love to know it. It begs the question, do all Fibro patients have these red patches (with Possible Hsv1 residing in those patches) even if they do not have gut symptoms or the unnamed gastro disease/issue? Or would this protocol only work on Fibro Patients who have these red streaks and unnamed gastro issues? And, would they find these ‘red streaks’ in CFS sufferers as well, or in CFS sufferers with Gastro complaints and the specific unnamed gastro disease presenting with similar ‘red streaks”? Would love to gain some clarity on this.

    • Cort Johnson

      November 20, 2014 at 7:13 pm - Reply

      I’ll try to find out how the patients were chosen and if everyone with biopsies had the red streaks.

  • Debbie

    November 19, 2014 at 10:12 pm - Reply

    I have had fibro/CFIDS for over 20 years.After hearing of this study on your website and my Dr. getting the info from Dr. Pridgen I started on the Celebrex/Famvir combo. After several weeks the pain was almost gone-I felt like I was in a new body!!! It was amazing.Then I started getting more fatigued than usual and had issues with my blood pressure dropping very very low and being weak. My doctor was mystified, but since the new meds were the only thing I was doing differently she assumed they were to blame. I went off the combo and after several months I’m just now starting to feel like my energy level is getting back to where it was before and the pain is back to how it used to be-pretty bad most of the time. I haven’t tried going back on the Celebrex/Famvir yet. Just putting this out there to see if anyone else had any similar experiences? Have never had anything else provide pain relief like this did!

    • Cort Johnson

      November 19, 2014 at 10:20 pm - Reply

      Thanks for letting us know Debbie – no one ever said this was going to be easy…

      Something must be happening with your ANS. Did your doctor recommend anything to increase your BP?

      • Debbie

        November 19, 2014 at 10:40 pm - Reply

        You’re welcome-I agree-I think my Dr. was concerned about having me take any more meds(for the low blood pressure) at the time, so we just went with adrenal support, rest, stay hydrated and it gradually got better. It’s now back to my normal which tends to be on the low side. Thanks for all the information you provide about these issues, Cort!!

      • marcie myers

        February 19, 2015 at 2:16 am - Reply

        Cort, hypotension is only one of many symptoms of Herxheimer’s die-off and perhaps was why Debbie was having problems with low blood pressure. Dr. Montoya said to expect this die-off; that we would feel worse before we felt better. marcie

    • Sabine

      November 20, 2014 at 2:20 pm - Reply

      Debbie, may I ask you in which dosages you took Celebrex and Famvir?
      I suffer from fibromyalgia since 6 years and I consider asking my doctor (here in Germany) if he’d prescribe me these drugs for a self test. A dosage would make it easier to persuade him. THANKS – Sabine

      • Debbie

        November 20, 2014 at 7:46 pm - Reply

        Hi Sabine-my doctor had to sign a confidentiality agreement to get the details of the study so I’m sorry, but I don’t think I’m supposed to post the dosages until Dr. Pridgen actually releases that information. Your doctor can contact Dr. Pridgen to get more details as long as he/she is also willing to sign the confidentiality agreement. Wish I could be more helpful. Debbie

        • Sabine

          November 24, 2014 at 10:46 am - Reply

          Thank you for your answer, Debbie!
          I hope they will also give the dosage info to international doctors. I will try to find a doctor who is willing to help me with this.
          Sabine

        • Sabine

          February 18, 2015 at 5:26 pm - Reply

          Hi Debbie, I finally found a doctor who would prescribe me these two drugs for off label use. But I did not find any information about how my doctor could contact Dr. Pridgen. Maybe it is because my english is not so good and I don’t understand everything written on the web pages.
          I really hope you read this. I would really appreciate, if you can help me find out how my doctor can contact Dr. Pridgen. My email address is sagichdochnicht@gmx.net
          THANK YOU so much!!
          Sabine

          • marcie myers

            February 18, 2015 at 7:02 pm -

            A lengthy article originating on the University of Alabama website and an abstract presented to the American College of Rheumatology Conference indicates that the two drugs Dr. William “Skip” Pridgen and virologist Carol Duffy PhD used in their Fibromyalgia antiviral trial were Famciclovir, better known as Famvir and Celexicob, best known as Celebrex. – See more at: http://simmaronresearch.com/2014/11/drug-combo-pridgen-antiviral-fibromyalgia-trial-identified-results-available/#sthash.gPJCectK.dpuf
            Liebe Sabine, Meine Mutti war von Munchen und ich kann besser Deutsch (Bayerische…haha!) sprechen als schreiben. Aber, der Doctor ist von Universitate der Alabama und er heisst Dr. William “Skip” Pridgen. Wenn Sie wollten, Ich kurnte sein telephone number finden. Schreibe mir email: slosouljourn@live.com in USA. North Augusta, South Carolina. Viellen Gluck!!!! Ich heisse Marcella (Marcie) Myers

          • marcie myers

            February 18, 2015 at 7:30 pm -

            Liebe Sabine,
            Ich habe Dr. William “Skip” Pridgen demm sein email und telephon number gefunden. Ich habe dir ein email geschickt zur deine email address. Marcie Myers

          • Debbie

            February 18, 2015 at 7:34 pm -

            Sabine-just sent you a personal e-mail. Debbie

          • Sabine

            February 19, 2015 at 12:24 pm -

            Thank you both very very much :)

    • marcie myers

      February 18, 2015 at 7:36 pm - Reply

      Mayhaps the combo was killing off the virus which according to many MD’s, Dr. Montoya among them, you will “feel worse before you feel better” due to the toxins produced by the viral die-off also known as Herxheimer’s Syndrome (?sp). marcie

    • marcie myers

      February 19, 2015 at 2:13 am - Reply

      Dear Debbie,
      I was researching Herxheimer’s again because of your comments and hypotension is one among many of the symptoms the body may manifest due to the rapid release of toxins into the bloodstream. I wonder if this may have contributed to your low blood pressure. Maybe ask your doctor??? I gave Sabine Dr. Pridgen’s email address which his surgical office was more than happy to give me. Good luck. Marcie

      • Debbie

        February 19, 2015 at 3:49 pm - Reply

        Thanks for the information & good wishes, Marcie. I didn’t realize that hypotension could be a symptom of Herxheimer’s. I’ll look into this more myself.I did expect that I could get worse before feeling better, but this reaction was severe enough that I had to reconsider what I was doing. I haven’t given up on this treatment-am looking at trying each drug individually, starting with lower dosages and building up, and doing some type of detox with a far infrared sauna before and during the treatment. I had some other issues I had to get sorted out before giving it another try, but I expect to be trying it again very soon. I also sent Dr. Pridgen’s contact info to Sabine.

  • Elizabeth

    November 20, 2014 at 3:48 pm - Reply

    This is not medical advice but I’m just saying that I’ve found olive leaf extract remarkably effective against herpex simplex mouth sores. A friend who suffers extreme outbreaks around her mouth and into her nose found complete relief with this remedy. To be used sparingly/as per the label; it is strong stuff.

    Anyway, have just started giving my son with CFS a daily dose.

  • Debbie H.

    November 21, 2014 at 3:51 am - Reply

    Thanks for supplying this information. Do you know how long phase 3 takes, and will there be a phase 4. I’m having a hard time with patience. The best combo so far is Savella, Ropinirole, Cyclobenzapr, and Quetiapine for sleep. I function at 50% to 60 %. I’d love to boost that up. Maybe I should add some Celebrex.

    • Cort Johnson

      November 21, 2014 at 5:51 am - Reply

      I don’t know how long a phase III trial will take but I imagine it will take quite some time. They need to raise the money, then enroll all those people in it…

  • Cecelia

    November 21, 2014 at 3:38 pm - Reply

    This is a very exciting, potential, treatment breakthrough, in my view, and I look forward to finding out the recommendations for dosages.My nervous system is being steadily degraded with autonomic nervous system problems, neuropathy and cognitive problems. Also had that vagus nerve problem of vomiting in the morning due to the stomach not going to work on digestion when it should, but have remedied this by not eating until later in the day. I have had this type of Herpes virus on board for decades. Any help knocking back any form of on board “parasite” or “predator” is most welcome!

  • F

    November 25, 2014 at 8:22 am - Reply

    I have been studying this for over 15 years.
    There are numerous strains of herpes in the average adult body. Epstein Barr Virus (causes mono, with or without symptoms) is a herpes virus. CMV is also a herpes virus. More than half of people with longterm ME/CFS have extremely high titers for these herpes viruses, as well as others, including hhv6 etc etc.

    The KEY is to be tested for these herpes titers. Then you will know if you are a good candidate for Valcyte (what they treat you with at Stanford) or other antivirals. …So, when you take these major antivirals, you are treating many strains of herpes viruses.

    Good luck, friends! I have lived with ME/CFS and Fibro for over 2 decades now. There is hope!

  • Good Hill

    November 25, 2014 at 4:32 pm - Reply

    The article seemed to indicate that Famvir was more effected than Valtrex but I am not sure. Any insight?.

    • angela

      December 21, 2014 at 10:44 am - Reply

      Years ago i began taking antivirals for herpes before i realised that i also had chronic fatigue/FM. Valcyclivor and Acyclivor did not work, then I tried Famcyclivor and the virus was suppressed, i also noticed that i didn’t feel so tired either, but i didn’t realise the connection. I’ve been on fmcyclivor for about 5 years as suppressant therapy, and on the protocol as per the current trial with celebrex for several monte and a great improvement occurred, not perfect. see my reply on dec 21 at 10:32.

  • Josh

    November 27, 2014 at 8:32 pm - Reply

    I’ve been following this for a while and will be very curious to see results

    Having looked dug around a bit on Famciclovir, it seems that it’s usually prescribed for short periods. Does anyone have a sense of how atypical or risky it would be to have someone on a drug like this for four months or more? Are Pridgen/Duffy at all worried (as one of the posts above seems to suggest) that the improvements only last as long as patients are actively on the drugs? I haven’t seen much commentary on this other than Pridgen’s comment that the virus ‘goes to sleep’ at a certain point, but I don’t know how realistic that is.

    I plan to talk to my doctor about this next week and am debating whether it’s worth trying at this point or better to wait until some longer term data is in place. (My Fibro symptoms are generally in check and fairly mild compared to what some of you deal with.)

    • Cort Johnson

      November 27, 2014 at 8:40 pm - Reply

      I’ll ask Pridgen about long term effects of the drug.

    • Josh

      November 30, 2014 at 7:22 pm - Reply

      Thanks Cort. This blog is a real public service.

      I was curious about one other thing too. I have been reading about this new drug, Pritelivir, though it seems geared toward HSV-2 rather than 1. Of the two drugs, Celebrex seems to me the cause for more long term concern (though I don’t know what Famir’s longterm effects are) and I’m wondering if, in a couple years, we might see a new line of HSV drugs and combos that might be more effective and less rough on the system.

      • Cort Johnson

        December 9, 2014 at 5:38 pm - Reply

        Thanks Josh – I think that’s very possible and good news as well.

    • Cort Johnson

      December 9, 2014 at 5:41 pm - Reply

      All herpesvirus drugs are I believe prescribed for short periods of time, but they are often used very long term mostly without issue in ME/CFS and sometimes FM.

      I will ask whether improvement continued post drug. ME/CFS physicians find that when the drug works improvement usually does continue; however, many patients relapse at some point.

    • angela

      December 21, 2014 at 10:32 am - Reply

      Ive been on famciclivor for about 5 years, one tablet twice a day, increased several months ago when we found out that 500 twice daily with celebrex was in the drug trials. i do feel much better for following the regime, but i have still had episodes of coldsores on my lips/increased fatigued periods at timesl. i wonder if the virus has become at least partly immune to the drug by now, i will still take it as its the companion med to celebrex, and i suspect that its the work of the celebrex interacting with faciclivor and working as an antiviral that is doing more good at stopping the virus now.

      • angela

        December 21, 2014 at 10:36 am - Reply

        ps: i havent noticed any side effects from famciclivor while taking it long term every day.

      • angela

        December 21, 2014 at 10:47 am - Reply

        oh and another thing, i recently had an outbreak of what i suspect was shingles, so theres another virus in my system! HSV1, HSV2, eppstein barr and shingles virus – they are all related. I’m thinking that maybe i need a broad spectrum anti viral!

  • judy chadwick

    November 30, 2014 at 1:40 am - Reply

    Is there any mention of the cardiac problems associated with the use of celebrated?

    • Cort Johnson

      December 9, 2014 at 5:39 pm - Reply

      The side effects in the study were quite low as I remember. Don’t remember anything about cardiac problems.

  • Sissy

    December 3, 2014 at 3:22 pm - Reply

    I want to try these because I always have cold sores in my mouth along with swollen neck glands since I had Mono at 14 really bad, but at one time a heart doctor who put me on a holt monitor for 3 days for erratic heartbeats told me I would be probably be put on a pacemaker later on in my 50’s (now) because my heart would slow down to 50 beats a minute at times, all these years later no problems but I have noticed my blood pressure is slightly lower 110/68 so I don’t know if I should try? Can anyone advise me? Please…Sissy-Rita Shaw

  • Andrew

    December 6, 2014 at 3:08 am - Reply

    I’ve just started this a few days ago. I have taken valtrex before (1000mg) and found that it took about 5 weeks before it fully kicked in. How long were you on it Debbie ? Side effects seem to be a bit more tolerable than valtrex so far. Still prefer to have none though….. I’m not sure what doseages to take for the famvir so just experimenting at the moment. It doesn’t seem clear to me what the equivelancies are with valtrex ?

    • Debbie

      December 9, 2014 at 7:33 pm - Reply

      Hi Andrew-I was on the combo for about 8 weeks and had significant pain relief within 2-3 weeks.

      • Andrew

        December 16, 2014 at 3:31 am - Reply

        I’ve been taking it for 2 weeks now. Side effects have been minimal still (as have any improvements), but there’s definitely a cognitive effect. Like valtrex there’s some sort of slowing down of the brain. In this case there is dizziness. Does this go away ? It’s making motorbike riding much harder. I sometimes wonder if part of the reason these anti-virals help is because they are shutting down some cognitive function in some way. Similar to taking a sedative such as clonazepam – in the sense that it gives the brain and body a chance to rest and heal recharge in some way.

        • Debbie

          December 16, 2014 at 7:15 pm - Reply

          I’ve had dizziness as part of my issues for many years, with it getting better and worse at times without knowing why. I didn’t find that it got any worse on these drugs-until my blood pressure plummeted-then it did. Not exactly your situation. Hope it levels out for you.

    • Moira

      January 7, 2015 at 3:44 pm - Reply

      Andrew – would you share what dosage of the medications you are using. My doctor is open to prescribing them, but is interested in knowing what was used in the study. Thank you for any informations.

  • Foodsteaks

    December 8, 2014 at 6:52 pm - Reply

    A couple of questions. First, is it possible to have HSV-1 though blood test show a person is negative for that titer? Second, is there any link in this study to HSV-2 or any research into it? I didn’t see anything about type 2.

    • Cort Johnson

      December 9, 2014 at 5:37 pm - Reply

      I am going to ask Dr. Pridgen about this but I imagine that it does not show up in standard blood tests. HSV-2 does not appear to be present.

      • Josh C

        December 10, 2014 at 11:32 pm - Reply

        I’m also curious about this. My HSV IGG test came back negative so my doctor thinks the combo would make no sense.

    • Debbie

      December 15, 2014 at 7:26 pm - Reply

      My blood work for HSV-1 did come up negative, but tested positive for HSV-6, so I my case it appears this combo may work on something other than HSV-1. Have never had any gastro tests done for HSV.

  • Tim

    December 15, 2014 at 5:38 pm - Reply

    Not sure if this thread is still active or not. I would be interested in knowing if the time it takes to put the virus in a dormant state is related to the severity level of FM in the patients.

  • Jean Hanson

    December 17, 2014 at 5:23 pm - Reply

    I am a 65 year old female, retired RN. I have had herpes simplex x 45 yrs , cultured many times as stage 1, and none STD even tho it has moved from arms to legs to upper pubic area is apparently non contagious as neither husband has gotten it.
    Use Valtrex cream and pills when I feel it come on…swollen lymph with it.
    I was also diagnosed with fibromyalgia 25 years ago and as I age the symptoms seem to be getting worse.
    If I could participate in this study, this might shed light on some of my weird diagnosis over the years.
    I live by El Paso, TX.

  • Patricia May Lubbe

    December 17, 2014 at 10:47 pm - Reply

    Dear Dr. Pridgen. I was diagnosed with Fibromyalgia in 2007. Since that time I have been on many different drugs – also Ephilim. I stopped most of it because of gaining weight but still take Trepeline and Tramal with Paracetamol and Serdep.
    During this year I got Shingles on my back, which is caused by the same Herpes Virus that causes Chickenpox. At the time I was wondering if it could be connected to the Fibromyalgia. Needless to say, I think you are on the right track and I am of course very excited!!!

  • Andrew

    December 22, 2014 at 1:08 am - Reply

    I stopped taking it….. sleep was pretty crazy and I was dizzy all the time. Couldn’t think very fast and my memory recall was bad. Pain had reduced and I was finding exercise maybe a little easier. I still think part of the reasons the AV’s work is because they reduce the excessive brain activity.

  • Dona

    December 22, 2014 at 6:54 pm - Reply

    I would also be very interested in this trial. I have a few viruses that were found through blood work when I was being tested to find out whyi was getting sick. Eventually diagnosed with fibro in 2004. My health is very bad right now also from numerous drugs a doctor put me on over a four year period. I’m so bad I really can’t take it anymore. I need help desperately.

  • Lisa

    January 4, 2015 at 5:53 pm - Reply

    I rarely get on the computer and am very unfamiliar with this type of dialog between people, but I am desperate for help and understanding. I contracted genital herpes at the age of 18. I am now 48. In my late 20’s I began having severe outbreaks that were ongoing. Months after the onset of this I began to have severe headaches and heart palpitations. I suspected herpes because it had been so severe when all this started. FI went to many drs. that said they could find nothing wrong with me. I became pregnant at 30 and lost the baby at 3 months. I became pregnant shortly after and had my daughter 5 weeks early. She was in intensive care for 2 weeks and they did not understand what was wrong with her. They told me she was having seizures at birth and they kept her sedated while in intensive care. She made it through and I carried her home where everything seemed ok for her. When she became old enough to talk, I realized she had problems with her memory. This has continued. She is now 17. Over the last several years her and I are both having all the same symptoms. We both have sever headaches, originating in our necks. We also have wide spread pain, fatigue, dizziness, irritable bowel, problems in our ears (feeling stopped up and moments of sudden hearing loss. I have started getting little tiny itchy blisters all over my body and believe this to be herpes. I have also been having problems with my eyes for the past 7 months. they get the tingling sensation through them, feel like they have thick goo in them and look pink and glassy a lot. I have noticed my daughters eyes have been looking similar to mine the past few months but not as severe. She has not said anything about it. I have poor cognitive ability and feel like I’m in a confused stated a lot. I am severely distraught and have panic attacks about what is wrong woth us. She asks me all the time why do these things happen to her. I tell her I don’t know but that I have the same problems and she is like me. I don’t know what to tell her because I have no answers or solutions for us and I don’t want her to have the fear and depression that I have over this. I have told drs. that I believe that everything that is wrong with me is being caused by the herpes virus, but I’ve yet to meet a dr that takes that seriously. I need help especially for my daughter. She is young and innocent and does not deserve this. Can someone please lead me in the right direction. We are getting worse and I am so scared and confused about what is happening to us. Thank you. -Lisa

    • marcie myers

      January 8, 2015 at 7:51 pm - Reply

      Dear Lisa, my heart goes out to you. After so many years of feeling unwell and with the love of a mother for her daughter involved, issues can become muddled at best. Anxiety alone created by your many worries can cause many of your symptoms so I’d encourage you to begin with this issue first. It affects us in many, many other physiologic ways. Unfortunately when we go to doctors with a whole litany of symptoms, it’s easy for them to suffer from poor cognitive ability themselves. One step at a time; one symptom at a time has worked best for me. Most MD’s will gladly put a patient on a preventive dose of a herpes medicine if you have constant genital or oral lesions and this generally will hold the virus in check as far as outbreaks go. Many of us retain very high titers to many viruses but the actual reason is as yet undetermined as no virus is found to remain”active”. Parts of our immune system as well as our central nervous system seem to remain in “overdrive” based on current research but, again, the actual cause is unknown. I realize that our USA MD’s are unschooled as to CFS/ME but with patience you can find an empathetic physician that will work with you. One step at a time. One MD at a time. One breath at a time. I was diagnosed with CFS in 1994 and am happy to say that I am still alive and though my choices are limited I continue to assert myself as much as possible. Anxiety has been a major issue for many of us considering how our lives are changed. I have dealt with it in many ways including counseling, deep breathing, meditation, gentle exercise, simply realizing that the world doesn’t come to an end if we don’t get something done, medication, and remaining above all else positive. Fear and anxiety can mimic everything else and make it all worse so do everything in your power to eliminate this symptom first and then move on to the rest. I had to forgive myself for all of the things I cannot do and be thankful for those that I can….. including my best thoughts for you. marcie

      • lisa

        February 7, 2015 at 4:18 pm - Reply

        Thank you Marcie for your thoughtful response and I am sorry that you suffer from this as well. I think that knowing that we are not alone and that there are people that are aware and understand and are trying to come out with medications will help to ease my mind a lot. I have felt so alone in this battle! Good luck to you and may God bless us all with better health! I pray for this every day

    • Michelle

      January 22, 2015 at 1:37 am - Reply

      I have been suffering from fibromyalgia for 8 years. I am now on morphine and muscle relaxers. I just found this site a couple.of weeks ago. I have been on Valtrex alone for 2 days and I have absolutely .o pain. I am going to ask for celebrex next week. This is a miracle to me!

      • Cort Johnson

        January 22, 2015 at 5:00 pm - Reply

        Great news Michelle! Good luck with it :)

    • Paul

      January 31, 2015 at 4:28 pm - Reply

      Lisa, go see a naturopathic Dr. There’s natural things for hsv including, but not limited to essential oils, cats claw, etc. Order go there.they can test you also.

  • Bonnie Ramsey

    January 7, 2015 at 6:15 pm - Reply

    Both my daughter and I have had mono (Epstein Barr) in the past. Now I have fibromyalgia/CFS and she has Sjogren’s Syndrome. Do I understand from this information that we both have herpes viruses at the core of our problems?

    • marcie myers

      January 8, 2015 at 8:07 pm - Reply

      No. Almost everyone has had EBV in their lifetime and will show antibodies to indicate past infections with this virus. However, those antibodies are there to protect you from constant “re-infection” although it is possible after a long period of time for your body’s immune system to stop recognizing the EBV virus and you might could “re-activate”. Many, many viruses as well as many other pathogens such as bacteria and parasites have been looked at for as the culprit for FM/CFS but thus far the jury is still out. Way out. I wish it were that simple but I anticipate it to be part genetic, part environment, with many bodily systems involved. I find it interesting that ONLY HSV-1 was found in the gut studies and no HSV-2 as they are generally interchangeable. The whole study seems highly commercial (possibly for future profit’s sake) but that is my very personal opinion. I was diagnosed with CFS in 1994 and my daughter developed a rather nasty case of Raynaud’s around puberty, another autoimmune disorder that she deals with daily. Luck to y’all. marcie

  • Bonnie Ramsey

    January 8, 2015 at 11:07 pm - Reply

    Thanks, Marcie. How are you doing? I’m dealing with a lot of fatigue with my fibro and get really discouraged. I was hoping this antiviral idea would be a big break through. Bonnie

    • marcie myers

      February 8, 2015 at 1:14 am - Reply

      Dear Bonnie, I was diagnosed with CFS 25 years ago due to high viral titers, lowgrade fever, extreme fatigue, cognitive and short term memory difficulties, etc. I managed to continue my nursing career for another five years until I ran slam out of coping skills to do anything and retired at age 44. I will be (shriek!) 60 this August and my symptoms have remained fairly steady and my life fairly small and quiet. I had 2 cervical neck surgeries in 2012 due to herniated discs and vertebral stenosis meaning my vertebrae were calcified in the inside and squeezing down on my spinal cord. The severe pain in my arms that began 7 yrs after my diagnosis of CFS and thought to be simply FM have subsided significantly. But, Bonnie, every day is a challenge for me. My marriage ended in a bad way as a result of my CFS and my own inability to accept my limitations and loss of roles and livelihood. I’ve worked hard toward acceptance and gratitude but it’s not been an easy task. It’s much easier to be angry and bummed out but I’ve found that to be not helpful at all. Mind you I’ve had many years to research my illness and deal with my own feelings and reactions and in no way want anyone to think I’ve either given up or given in. Realizing that I’m likely to have this damned illness the rest of my life…. what choice do I/we have?…. I have given it my all to love and accept myself and keep a calendar notating the tiniest of accomplishments. I am a patient advocate for all of us in whatever form or fashion I find able. I do think that the research is getting closer to finding what shall prove to be a variety of causes and many bodily systems involved in our overly sensitive central nervous systems. My brother has MS and my daughter Raynaud’s so I feel there will be a genetic component tossed in as well. Bummer but, hey, today was one beautiful day and I thank you for asking how I am. As marvelous as I can be!!! xoxoxo marcie

  • Merleyroy

    January 18, 2015 at 3:06 pm - Reply

    Hi, I’m a bit confused by a comment Carol Duffy made in her University of Alabama article. This is the quote : “Viruses are basically the smallest parasite,” she said. “They’re not even living, and yet they can completely take apart an ecosystem.”
    If viruses are not living, they must be dead. How can a dead thing have any effect on us, much less continue to replicate in the body? Can somebody explain please, because I just don’t get it!

    • Cort Johnson

      January 18, 2015 at 5:18 pm - Reply

      My understanding is that viruses are kind of bits of DNA – when they get into the body they hijack our DNA to produce more viruses; they can’t reproduce unless they’re inside our bodies.

      • Merleyroy

        January 18, 2015 at 5:44 pm - Reply

        That’s truly weird! So it’s a bit like our DNA has somehow been genetically altered and we are producing our own illness?
        Would like the full scientific explanation on this; but thanks for your insight Cort.

        • Foodsteaks

          January 18, 2015 at 7:02 pm - Reply

          Viruses don’t have complete cellular structures like regular organisms, generally how we define life. They’re basically a protein capsule that contains some DNA which is code that tells a cell how to function. If they come into contact with a cell that’s receptive to the virus’s protein capsule, the virus’s protein capsule breaches the cell membrane and it’s DNA heads to the cell nucleus in an attempt to combine with the cell’s DNA and reprogram the cell the make more of that same virus. So in order for the virus to be successful, it has to 1) be able to penetrate the cell membrane with a complimentary protein wall and 2) the viral DNA must be compatible enough with the cell’s DNA to allow the reprogramming. Think of a virus as a USB thumb drive with malicious software (computer virus, malware, etc). The thumb drive on it’s own can do nothing. No “life” as it were. Plug it into a computer (breach the cellar membrane of the “host”) and it can now “inject” it’s malicious code into the computer/host to reproduce itself and attempt to infect more computers. If the computer virus was written for Windows, it won’t infect a Mac or Linux computer. Same with virus in the animal kingdom. A virus that can kill a cat may have zero effect on a human. If the computer doesn’t have a USB port, you can’t plug in the USB drive to infect the computer. If an animal virus a non complimentary protein to breach human cells, it can’t “plug in” and do it’s damage.

          • Cort Johnson

            January 18, 2015 at 7:27 pm -

            Great explanation! Thanks :)

          • Merleyroy

            January 19, 2015 at 6:37 pm -

            Thanks Foodsteaks, your clever computer analogy made all clear as can be – I applaud you!

  • Madi

    January 20, 2015 at 5:49 am - Reply

    how can we be considered for phase 3? Or is it too late?

    • Cort Johnson

      January 20, 2015 at 10:00 pm - Reply

      The trial hasn’t started yet. Stay tuned to these blogs to find out how to participate. I imagine that it will take a while for it to get started: they have to raise the money, get their IRB’s done, get the study parameters past the FDA and then start it.

  • chris smigiel

    January 31, 2015 at 12:07 am - Reply

    please notify me of new posts

    • Cort Johnson

      February 3, 2015 at 7:06 pm - Reply

      I enrolled you Chris – please check your spam folder first. Thanks

  • flora

    February 1, 2015 at 7:45 am - Reply

    I would appreciate some feedback on something. 6 years ago. I went thru Dr Tennebaum s (sp?) Clinic franchise down here. Eventually I was tried on Valcyte and I believe Famvir as well but can’t say for sure. Anyway my reaction was such leg weakness that my legs felt made of rubber! Terrifying, particularly in that because of an incomplete spinal cord injury I use knee high leg braces and a cane. So what is done for a patient with this reaction? Surely I am not alone in this reaction?
    TIA.

  • faith jalasky

    February 2, 2015 at 3:26 pm - Reply

    I took 500mg of famvir 500 mg 2x’s a day and 200mg of Celebrex for 2 weeks. the Celebrex is not a new medication for me and I never had any issues with it. and Celebrex helps me dramatically with stiffness and mobility. but the famvir made me feel like I had the worst flu I eve had in my whole life. I was so sick I could barely get up and feed my pets. my legs were extremely weak and shaky. and my mentation was so fogged I couldn’t think. and I felt like I was going insane. and terrible chills that made my body shake , yet no fever but I was sweating. just horrible. I wonder if this is normal??????

  • faith jalasky

    February 2, 2015 at 3:28 pm - Reply

    I had a terrible reaction to famvir . please read my blog. hugs

  • Marie sakellarion

    February 3, 2015 at 6:23 pm - Reply

    Was diagnosed with CFS around 8 years ago. Went on Valcyte for 9 months and experienced significant improvements in energy levels and cognitive function. I had some quality of life back, although it did not clear up the chronic pain, digestive problems and sleep disorder. Last winter I had pneumonia, and that set off a cascade of declining health again. Recently it has felt as though the CFS is relapsing. I talked with my Dr. today and agreed to start Celebrex/Famvir. I’ll keep you all posted on how it goes for me.

  • Marie sakellarion

    February 3, 2015 at 6:27 pm - Reply

    Flora, I also had very strange and scary reactions to Valcyte, but managed to stick with it for 9 months. It was well worth it for the benefits I got from it.

  • flora

    February 3, 2015 at 8:54 pm - Reply

    I did explore a bit online to read that Valcyte and Valtrex are 2 different beasties. We can hope that Drs Pridgen and Duffy will broaden their antiviral respondents as their research moves forward. I may wait on this option because of my reaction to the Valcyte and Famvir. I have recently begun to use a mild Hyperbaric ‘portable’ chamber as an oxygenating antiviral. Also, tho the B1/ magnesium did not work on me (granted, a different topic) I have started resveratrol at bedtime. Last night being my 4th night I have to admit my wake up pain is significantly less, a 2 vs a 7-8 which is oh thank GOD amazing. Doing the Resveratrol in lieu of the low dose naltexone for now ( again, a different facet). I only took 1 @ 50mg tramadol this morning, I think a first in 18 years. With this much less pain I think I might be able to do very mild Pilates or yoga type exercises, probably more stretching than aerobic (a dirty word).
    Thank you Cort for your ongoing research blog & news blog.

  • Laurs

    February 8, 2015 at 9:42 pm - Reply

    Marie, Have you found that the Celebrex/Famvir is helping any yet. Also what dose are you taking of them. thanks so much :)

    • Marie sakellarion

      February 20, 2015 at 12:57 am - Reply

      Haven’t started yet. Insurance company is giving me a hard time. Trying to get Celebrex and Famvir pre-approved. :0(

    • Marie

      March 19, 2016 at 2:33 pm - Reply

      Just an update….I’ve been on 200mg Celebrex and 1500mg Famvir for almost a year. I started slowly on the Famvir because I was having some nasty herx. After a couple of months the sore throat, swollen glands and extreme tiredness decreased considerably. Celebrex has helped with the pain, but if I stop taking it or miss a dose the pain comes back with a vengance. At this point I feel that the protocol helped with CFS/EBV, but there has been no improvement in the fibromyalgia. I was diagnosed with CFS/chronic EBV approx. 10 years ago. At that point 9 months on Valcyte knocked down many of the CFS symptoms. Since Valcyte didn’t help with the pain my doctor decided that I also have fibromyalgia. I’ve tried many, many treatments for the fibro with limited improvement. Last Fall I had a relapse of the CFS/EBV, so my doctor agreed to try the Pridgen Protocol. I’d like to hear how others are doing on it.

      • Cort Johnson

        March 21, 2016 at 3:38 pm - Reply

        Thanks for the update Marie.

  • Uli

    February 16, 2015 at 12:44 pm - Reply

    Does anyone know how to contact Dr. Pridgen or one of his scientists? I’m from Germany and my doc would agree to prescribe me the med combo for off-label use, but we don’t find a possibility to contact Dr. Pridgen. We have heard that my doc has to sign an arrangement of confidentiality, but we have no idea how to get in contact.
    Can anyone help me, send me a phone number or an e-mail adress where we can address to?

    Thank you very much,
    Uli

    • marcie myers

      February 23, 2015 at 4:35 pm - Reply

      Liebe Uli,
      Das email fur Doctor William “Skip” Pridgen is tsasurgery@gmail.com. You can Google his name and find his office address and phone number as well. I called the office and they gave me his email address above. Good luck with getting in touch and finding out the correct dose. Auch eine Deutsche aus Munchen als Kind, Marcie

  • Jo

    February 19, 2015 at 11:03 pm - Reply

    I have CFS, fibro, sjogrens, hemochromotosis. I am definitely interested in this study. How can I sign up for the trial? Thanking you in advance.

    • Cort Johnson

      February 19, 2015 at 11:30 pm - Reply

      As soon as they start we’ll definitely let you know. Stay tuned to these blogs. If you’re not signed up – you can sign up at cortjohnson.org on the widget on the right hand side of the page

  • Bd

    February 23, 2015 at 9:11 am - Reply

    debbie,Josh C and foodsteacks : I am very interested in your situation : My CFS/FM started just after a first genital outbreak of herpes (2 months after a relationship) : i could not make a swab so could not tell if it was HSV1 or 2. But I tested negative for both (and still test negative). I have always believed that my CFS/FM was caused by the inability of my immune system to answer correctly to HSV. The other possibility would be that it was not an HSV outbreak…but it would be a very impressive coincidence…
    I wonder if other people with FM have evidence of HSV 1 or 2 outbreaks but no positive blood testing ?
    Cort, I do not know how close you are from Dr Pridgen, but do you know if the people who were tested with active HSV in their gut were immunocompetent to this virus (positive blood testing) ? I would be very very interested to know the answer…and it would explain in Debbies situation why the combo was effective when she started it. I am currently on Valtrex 500 mg a day. It clearly helps but is not sufficient. Best to you all

    • Cort Johnson

      March 3, 2015 at 9:00 pm - Reply

      I will try and find out.

    • Josh C

      March 4, 2015 at 12:51 am - Reply

      yeah, i am still wondering about this as well. i never had any visible hsv signs, not even cold sores.

  • angela

    February 23, 2015 at 1:10 pm - Reply

    Thank you Cort and your team for your research and advice so far, it has greatly benefitted me! i have had CFS/FM since approx 2007 and unable to work for over a year and very little tolerance to exertion. I have had success with 500mg famciclivor/200mg celecoxib twice daily and i halved the celecoxib after a couple of months as it is a risky drug. (I don’t know the official dosage recommended – but this worked after slowly increasing to an effective level) and I have recently had a great 3 weeks of feeling ranging from less tired to asymptomatic and riding my bicycle for an hour at a time!!!!!. then the migraines preceded by photophobia started. Each time i get bright sun in my eyes, i get nerve pain around my body, my mouth stings like I’m getting a coldsore, i get very suddenly fatigued and listless, then i have a migraine that can last up to 5 days at a time. i have had all the symptoms i have noted here and intermittent brief migraine, absent migraine including light sensitivity episodes in the past with CFS/FM, but not so distinctly associated with bright light and the trigger and symptoms seem somewhat different. Any ideas? could the symptoms I’ve had after feeling well for 3 weeks be Herxheimer’s reaction? I’ve had my eyes checked and imaging done – nil abnormality found. it was overcast today and i went for a short bike ride (sunglasses on), no problem and today I’m not feeling any symptom of any illness other than light sensitivity. i hope I’ve explained myself clearly, its quite complex and difficult to convey my experience in a paragraph.

    • marcie myers

      February 23, 2015 at 4:27 pm - Reply

      Dear Angela,
      I Googled Herzheimer’s as regards anti-viral therapy medications and found simply a mention of it but no specifics as to how long or what the symptoms are…. http://www.masscfids.org › Research › Recent Research › CFS/CFIDS/ME
      The paper is titled, “Subset-directed antiviral treatment of 142 herpesvirus … to 5, and who had taken antiviral medication under the direction of his clinic for at least 6 … An initial Jarisch-Herxheimer response at the start of the antiviral medication … improvement was due to the antivirals as opposed to normal improvement in …… Herxheimer’s Reaction can take many forms and migraine’s are included among the many symptoms. Did you have migraines in the past prior to the Famvir and Celebrex? If I find any information regarding how long it would take for the toxins to build up in your body to manifest the symptoms, I’ll let you know. Meanwhile, hang in there and discuss all this with your doctor. marcie

  • angela

    February 24, 2015 at 5:38 am - Reply

    thank you marcie! i have been for another bike ride today with sunglasses on and its sunny too, no migraine or other symptoms have occurred! i don’t feel any CFS/FM symptoms at all today. maybe the nearly 1 month of migraine activity was some sort of phase during the recovery process, too early to tell for sure, but i won’t be surprised if this is the case. i have had intermittent infrequent, migraine activity (at times absent migraine according to my neurologist) during my illness but not as extreme and not so terribly light sensitive. i am in consultation with my doctor who had no suggestion as to what is happening, we are watching, and i have migraine medication. i had a clear MRI of the brain done 2 years ago, if this problem does persist for much longer, i will request another. my gut feeling is that I’m actually recovering from my illness. yah!

    • marcie myers

      February 24, 2015 at 5:59 am - Reply

      And I am all about going for your gut feelings so, you go,, Angie Baby! Let me know if you get well, when you get well. I’m in need of hearing some “I got well” stories right now. Sigh. marcie

      • Angela

        December 19, 2016 at 4:52 am - Reply

        Hi Marcie, After having a year off work to recover, I have been back at work (not nursing, that is too much work), but working part time as a teachers aide for 18 months now. Even with the celebrex/famvir combo I have relapses but it has rarely caused a day off work. My life has had to change dramatically, Im not perfect but at least I can earn an income again! And Im happy! I still get miagraines, light sensitivity too, but its manageable. I hope you are progressing well too. Have a great christmas and heres hoping for a new silver bullet to put this illness in its corner permanently.

    • rick

      March 15, 2015 at 2:08 am - Reply

      I’ve already sent an email both Dr. Carol duffy and TSAsurgery. They gave back to email and requested to persuade my physician to send an email to them.. But in Korea, there’s no one who understand antiviral can have a good effect on CFS. They even don’t know of existance of CFS. Plz…. I want to know dosage exactly. and the way you implemented. 500famvir 200celebrex twice(morning and night) daily? What do you thing about side-effect of celecoxib? I am also worried about side effect of medicine. Please email me..

    • angela

      March 15, 2015 at 11:53 pm - Reply

      I feel the need to reiterate the point that the medication and the dosage I’ve been taking was not as advised by the the team at simmaron research. the large dose antiviral was prescribed due to necessity to suppress the virus, and i also had joint pain so i took the anti-inflammatory at a high dose. the combo of the 2 seemed to interact and fight the CF symptoms with success. i am able to return to work again, although a less strenuous job than my nursing career. Celecoxib is a potentially risky drug at high levels if you have some of the health risk factors. i didn’t take a high dose for very long. I do hope that the research reveals that small doses and in short intervals can achieve the desired result.

      • marcie myers

        March 20, 2015 at 8:21 pm - Reply

        Return to work again!!! Wow! That would be a real miracle for me 15 years later (as a former nurse myself). How long have you been taking these two meds before you felt that much better? About a million people would like to know and I’m seeing my D.O. next week and will ask for these meds. I took acyclovir many years ago to no avail. And I take Ibu regularly for anti-inflammatory effect. Congrats on your success story.

  • najib

    February 24, 2015 at 5:17 pm - Reply

    Hi I want to know when we will have these medicine

  • Maher Rezkalla

    April 16, 2015 at 5:53 pm - Reply

    I am an MD and had to retire because I have a terrible fibromyalgia . I am eager to participate in this trial .please let me know
    how and if any MD is participating in these trials in southern ca ,zip 92374.thanks

    • susan berndt

      May 9, 2015 at 1:45 pm - Reply

      I am/was an RN and had to give it up. I too want to get into the trial

    • marcie myers

      May 12, 2015 at 2:37 am - Reply

      Dear MD and nurse, Maher and Susan, I have to tell you that I’ve been able on various occasions to present the research articles to different physicians during the course of my 21 years with CFS and had great success in my begging them to order certain labs in the past that were being researched and sent to the same specialty lab as well as right now I’m taking Valcyte 450mg BID based on articles published by Dr. Jose Montoya at Stanford U. When the MD knows you, and you’re as sick as we are, where is the harm? I’d encourage all of you to bring or mail an article about CFS research on a routine basis and not be afraid to ask for what you want. Since it would appear that there is nothing that can be done about elevation of certain cytokines or depression of certain NK cells, I don’t bother with that sort of thing. I’ve never seen a “real” CFS/ME/SEID specialist as there are only a small handful but have followed their protocols closely via Cort’s Health Rising website articles and others. Good luck to you both and keep the faith. It’s all we can do. Dammit. marcie

    • marcie myers

      May 12, 2015 at 2:48 am - Reply

      Dr. Rezkalla, my CFS began in 1994 but in 2000 I had sudden onset of severe upper extremity pain worse on the left. Though I went to various MD’s for this, I was diagnosed with FM and took Methadone for 10 years for this severe pain until finally in 2012 I was found via MRI to have severe cervical spinal stenosis and 2 herniated discs and following 2 surgeries am finally relieved of this horrific pain. Point being, make sure that you don’t have a vertebral issue by demanding such testing. I believe spondylosis is common in CFS/FM patients and underdiagnosed which would make sense as we do know that CFS/FM is an inflammatory disorder. Might be just about the only thing that seems to be known for sure. Just had to tell you….. marcie

  • Audrey

    May 10, 2015 at 11:08 pm - Reply

    Ok, I have FM, ME/CFS/SEID, Myofascial Pain, IBS, and the list goes on and on. One thing I do *not* have, however, is HPV! Can it exist solely in the gut without affecting the rest of the body? I suspect that the Famvir may be working on something else instead – or I’m the exception to the norm.

    • marcie myers

      May 11, 2015 at 6:37 pm - Reply

      Dear Audrey, Famvir is used for the entire family of herpes viruses. HSV’s. Not HPV though this is a virus as well that can cause cervical cancer. The herpes viruses include the common cold sore either on your lip or on your genitals, chicken pox, shingles, and several more. I think at last count there are 8 herpes viruses identified. Hope this clears up any misunderstanding you may have had. marcie

      • Audrey

        May 11, 2015 at 6:43 pm - Reply

        Ahh, thank you for the clarification Marcie! Makes more sense now. :)

        • marcie myers

          May 12, 2015 at 2:20 am - Reply

          Good deal. I got the feeling that you were a bit freaked out. I had a lowgrade fever every day for 20 years with my CFS until the past 6 months when it has been normal and I’ve felt SO much better I was actually getting some things accomplished in my life. Until today. The lowgrade fever returned. Origin unknown. White cell count always normal. Urge to screeeaaam! I’m a medically retired nurse but wouldn’t have a clue what to ask my regular MD to test me for….one of the numerous viruses implicated….Btw, there are now vaccines for HPV (Human Papilloma Virus) that commonly causes venereal warts and increases one’s risk of cervical cancer, for the Herpes Simplex Virus that causes “shingles”(Herpes Zoster) as well as one for the common “chicken pox”(Herpes Varicella). There’s still many other viruses like EBV and CMV that have been implicated in CFS/ME/SEID/FM not counting the ones as yet undiscovered. Needle in a haystack of sorts. And does a virus cause the problem or does another problem cause some virus to continue to raise its ugly head and/or does a virus have nothing to do with our illness? I’ve studied this for years and we are far from an answer and ours is a multi-system problem. Best of luck to you and keep the faith. marcie PS I think that the term HSV has now been replaced by HHV and a number (Human Herpes Virus 1,2,3,4…8). The Famvir (and Valtrex) covers the HHV’s while the Celebrex arthritis medicine is an anti-inflammatory with antiviral properties as well. Dr. Montoya at Stanford is/was using another antiviral called Valcyte which is more for CMV and EBV. If I’ve got the story straight. Take your probiotics religiously for that IBS. And don’t forget to breathe. Ha!!!

  • Shelly

    May 29, 2015 at 1:21 pm - Reply

    I have read the study Biliary and Gastrointestinal Manifestations of the Herpes Simplex Virus, Type I (HSV-I) William L. Pridgen, M.D., F.A.C.S., Erin Haggard, PA-C Tuscaloosa Surgical Associates which can be found at http://www.tuscaloosasurgery.com/PDF/biliary-gastro-herpes-simplex-ibs-final-copy.pdf. I find this interesting because I have both fibromyalgia and biliary dyskinesia. I am on disability and I am hopeful that this medicine will be successful at treating both problems. My question is would the dosoge of Famvir be the same for both fibromyalgia and gastroinestinal diagnosis?

  • lou

    September 1, 2015 at 11:49 am - Reply

    I have never heard of you &have just been told about this website..the mention of herpes as made my ears open more, I have always suffered with cold sores as a child, and still do from time to time,, in fact right at this momment in time I have a big one,&iam feeling at my worst for about 3/4weeks now, with flu like symptoms..I have fibro&ddd..I will say also I did contract genital herpes, around the time of my health deteriating dramatically.So I really think this virus has definatly got something to do with fibro symptoms. This needs to be out there in all countries, and gps need to know all about studies so people dont have to go on suffering sooo badly.iam in know way medical minded and dont understand everything here.

  • Andrew

    October 31, 2015 at 1:17 am - Reply

    I recently suffered for three weeks with an unknown throat, tongue, gum and lip breakout unlike anything I have ever experienced. After seeing 7 doctors, the final one said it was hsv. I thought she was crazy. I have had hsv all my life and have never had anything beyond a two week lip bump. After 3 weeks of not being able to eat quality food and adequate water intake and losing 15 pounds I felt like this was just another wrong diagnosis. She gave me celebrex and after only two pills I have a 50% improvement and am certain I will be better by the weeks end. Celebrex is amazing. The longest I ever went without a breakout was almost three years while I was taking Celexa. I thought that was interesting. I have no idea if that makes sense medically. Anyway, thought I would through that out there for the smart people to chew on. Thank you celebrex! So happy to eat, drink, sleep and have my life back again. I am still awaiting blood results for the hsv or mono. Either way, it works.

  • ok

    November 28, 2015 at 10:56 pm - Reply

    Hope Dr. Pridgen is successful with starting and completing phase III with very satisfactory results. ME/FM sufferers have been dealing with inadequate treatment for long enough and it’s time to really understand what’s going on, develop some tests for proper diagnosis and start treating it like the seriously debilitating condition it is. Best of luck with the trials, Dr. Pridgen.

  • TERRI

    December 4, 2015 at 8:39 pm - Reply

    CURIOUS ABOUT VIRAL.. AND BACTERIAL INFECTION POSSIBILITIES…. **STILL PRAYING ** !! ALMOST 19 YEARS WITH FIBRO/CFS NOW ….

  • Stacey Gray

    March 15, 2016 at 7:56 am - Reply

    Just curious, do you think that a high dose of ibuprofen as the anti inflammatory might work in lieu of the Celebrex? Dr on board with the Famvir but holding out on the Celebrex. Anyone? Tried the valtrex had initial good results but extenuating circumstances screwed up the cycle, now starting over work Famvir

  • Lauren Gordon

    July 11, 2016 at 7:42 am - Reply

    Cort, please can you advise if there is now any update on Dr Pridgen’s trials and results?

  • Jessica Fanson

    October 18, 2016 at 2:52 am - Reply

    I am very interested in the study. I would like to know how to sign up. Please help.

    • Cort Johnson

      October 18, 2016 at 9:48 pm - Reply

      The study won’t be open for a while but I imagine that contacting Pridgen’s startup – Innovative Med Concepts – would be the thing to do – http://www.innovativemedconcepts.com/

  • Andrew

    December 19, 2016 at 5:02 am - Reply

    I’ve gradually got myself to the point where I can do an evening run and follow it up with maybe some pain killers and a sleep medication. When I take the Famvir/Celebrex combo, I notice I find it harder to run and my body massively overheats and I can’t sleep no matter what I take and I get sick. Funnily enough evening running seems easier on valtrex. Anyone else comment on sustained cardio exercise on famvir ? Something’s not right if this is meant to be a cure ? I’m going to try to cross over to valtrex, but i have a feeling celebrex covers up the side effects of famvir better than valtrex – hence the final protocol – I suspect it’s because valtrex has a much longer half life so you’d have to take multiple dosings of celebrex ? I might try splitting the capsules….

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