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Feeling great after 20+ years - Pridgen protocol in Australia

Discussion in 'General ME/CFS Discussion' started by CatMad, Jun 2, 2018.

  1. CatMad

    CatMad

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    It's early days yet, but I wanted to update on my progress.

    I was diagnosed by an Aussie rheumatologist with CFS/ME late last year after 20+ years of fatigue and ever increasing pain. I had been diagnosed with hashimoto's previously. I had experienced a severe cold sore outbreak when I was 16, and never quite felt the same, getting progressively and having several significant drops in health and function following traumatic/difficult events - abusive relationship, two difficult pregnancies, ill parents etc

    I was still just managing two days a week work with an employer who was sympathetic and allowed me to arrive when I could and take weeks off as needed - I know how lucky I am! On my days off I was mostly either in bed or on the couch, in pain all over, light headed, exhausted, brain fog, couldn't concentrate, irritable - you know the deal.

    I read about Dr Pridgen on here and after contacting him I tried to find a supportive Aussie GP, without much luck at first. My regular GP was open to me trying Cymbalta in January this year once I had the dx, and within weeks my pain levels had dropped by 30% - I couldn't believe it and hadn't realised the extent of some of my pain until it was less. I still had hip, back and knee pain, as well as a compartment syndrome type reaction to walking, but what I had thought was arthritic pain in my wrists, ankles, hands and feet from being treated with steroids as a child, was all but gone.

    I flew to Adelaide from Melbourne to see a Dr that Dr Pridgen had been in contact with before on March 5th, and started the protocol that night.

    I started noticing periods of time when I wasn't so exhausted, I started to move differently - my mum and husband started commenting on the change in my voice, from strained, tired, and either irritable or flat, to chirpy and engaged. These spells of less exhaustion became more frequent, and I found myself feeling clearer headed and much less anxious.

    Three months in, and I feel amazing! I'm not 100% there yet, and I'm anticipating a long road with the need for a restrengthening program and some significant psychological shifts, but I can't believe the difference. I am enjoying work, in waking feeling energised and positive, I haven't felt light headed for two months, I can go out to the shops without feeling overwhelmed and dizzy within ten minutes. My kids playing noises are making me smile instead of seeth and grind my teeth. My patience is returning. I can shower without feeling wiped out afterwards. I am looking forward to my future...

    And there it is. My future. I feel like I have one. I'm sure so many of you will know what I mean when I say I didn't think I had one. At 42 I had been quite clinically and detachedly contemplating when and how I would take my own life before I was 60, because I couldn't face an old age with that fatigue and pain. It wasn't a depression thing, or didn't feel like it - it felt practical. That's a terrifying thought.

    I am so incredibly grateful to Dr P and my Aussie GP - my life is changing and I have so much hope, excitement and positivity for the future.
     
    Rlman, Tammy, Mary and 22 others like this.
  2. Runner5

    Runner5 Senior Member

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    That is tremendous. I love reading positive stories, heck yeah!
     
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  3. Mel9

    Mel9 Senior Member

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    This is a wonderful good news story. Are you able to share with us ?what is the Prigden protocole?
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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  5. CatMad

    CatMad

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    Dr P is happy to share the protocol with your Dr if you contact him. He is in the process of getting a proprietary combination drug trialled and approved, so I can't discuss the details. If I was in the US I would go to see him in a heartbeat - his is in Tuscaloosa. :)

    Edited for shocking spelling
     
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  6. cb2

    cb2 Senior Member

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    HI @CatMad I am glad to read your success. I too sent an email to Dr. Pridgen and he has been super helpful. he guided me through email about what i could try using some meds I already had on hand and my primary I hope has the paper work done so we can work together with him. He is a super nice guy. I too have been feeling and doing better. I have a question for you about the protocol if you feel up to it.. maybe we could PM? just a quick question. I know i could write Dr. P and he would answer, but i feel bad as he has helped me so much and hasn't charged me anything. isn't that amazing?
     
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  7. valentinelynx

    valentinelynx Senior Member

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    Hmm. Been taking Famvir daily for about 2 years to prevent recurrent shingles. Was taking Celebrex occasionally, which helped my pain, but had to stop because my small intestine cannot tolerate any NSAIDs (I have NSAID enteropathy with chronically bleeding ulcers throughout my small bowel). I cannot say that I felt significantly better overall when taking both of these medications. I don't think herpesviruses are a major part of my illness. Subsets!

    I am very glad the OP is having an excellent response, however!
     
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  8. Hip

    Hip Senior Member

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    Glad that Dr Pridgen's protocol is working for you, @CatMad.

    Would you say that you are a mild ME/CFS patient, on the ME/CFS scale of: very severe, severe, moderate, mild, remission? Usually when patients can work part or full time (with difficulty) that puts them in the mild category. And it sounds like you are headed for remission, which would be a 1-level improvement on that scale, from mild to remission, which is great.

    Were you tested for viral infections, by the way, and if so, do you know which infections were active? It would be good to get a handle on which sort of patients respond to Dr Pridgen's protocol.



    One study showed that transdermal celecoxib is viable. That should help bypass the intestinal problems this NSAID can cause. I while ago I did an experiment crushing a celecoxib tablet into fine powder, and applying the powder to a large area of skin (eg, top of thighs), adding a few drops of water to aid absorption. Though I have not really got any symptoms that I can use to gauge the efficacy of this approach.
     
    Last edited: Jul 5, 2018
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  9. CatMad

    CatMad

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    I think the only reason I was able to work even part time is because of the relationship/understanding of my employer and that I could work from my bed if needs be. My work was certainly suffering and I was much slower than normal and with more mistakes - but (without sounding horribly arrogant I hope!) my 'normal' and even impaired (for me) work quality has always been significantly better than average.

    I think there is a huge jump in functionality from mild to moderate that doesn't sufficiently cover the decline from any normal full time un categorised work to struggling with part time in an office that either lets you work from home, take weeks or months off at a time and have a nap during a work day if I was in office.. I was averaging 11 hours work a week over the past couple of years, but pretty much nothing else, being otherwise homebound. My instinct is that I was high end moderate, by the descriptions I was mild, although I certainly didn't have 'some' symptoms.

    Unfortunately I didn't have any virus testing. I wish I had!
     
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  10. CatMad

    CatMad

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    no problem, please do
     
  11. Lalia

    Lalia

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    I agree with @CatMad that the jump from mild to moderate is too extreme. Especially when lining it up with that other marker of functionality (sorry, the proper name has slipped my mind). For example, I’m classed as mild, which would put me at 90 - 80 on that functionality scale. But by my own estimates, my functionality/ activity has been reduced by more than 50%, compared to what it was when I was healthy (100).

    To say I was 100 when healthy and 80 - 90 now I have mild CFS doesn’t seem to come close to acknowledging the huge amount of functionality I’ve lost since becoming sick. Just my thoughts :)
     
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  12. Hip

    Hip Senior Member

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    Yes, on the scale of very severe, severe, moderate, mild, remission, each level is very distinct from adjacent levels, with each level being like a completely different lifestyle. Which makes it quite easy for any ME/CFS patient to recognize their own level, and place themselves on that scale.

    I find it is also a good scale to judge the efficacy of any treatment, because if a treatment can move you up even just 1 level on that scale, it's a major improvement, and will lead to a major change in your lifestyle.
     
    CatMad likes this.
  13. SueJohnPat

    SueJohnPat Sue

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    The Pridgen Protochol was a large first step on my road to recovery.
    I got my family doctor to prescribe valtrex and Celebrex. ( the actual drugs are famvir and Celebrex but it is very similar).

    I still “ pulse “ with this combo ( I find if I am exposed to too much “ mold “ I have to use resume temporarily) and am never in severe pain anymore.
    So glad it helped you.
     
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  14. valentinelynx

    valentinelynx Senior Member

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    I appreciate the thought. Sadly, the literature on the effect of NSAIDs on the small intestine is still scanty, especially given the extent of the problem. Because it is not easy to see the small intestine (requires either a video endoscopy study in which you swallow a tiny camera that transmits images to a recorder for 8 hours or a special type of direct endoscopy that is rarely done), most doctors and certainly most of the lay public, remains unaware that NSAIDs are extremely harmful to the small intestine. Studies have shown that a single dose of an NSAID increases the permeability of the small bowel mucosa!

    It is truly shocking that doctors and patients remain ignorant that damage to the small intestine is probably the greatest risk from taking NSAIDs. Everyone who takes NSAIDs is affected by this, although not necessarily to the same degree. Furthermore, attempts to prevent gastritis by taking proton pump inhibitors with NSAIDs (as I merrily did for many years, taking omeprazole with my ibuprofen) actually make it worse: studies have shown that proton pump inhibitors actually exacerbate NSAID toxicity to the small bowel! This is probably mediated by changes in the gut microbiome.

    In my practice, I often meet patients who have iron deficiency anemia but do not know why, or have had negative workups for bleeding from the stomach and colon. Chances are high these people have NSAID enteropathy, but their doctors are unaware of the possibility and the need for visualizing the small intestine.

    I was taking celecoxib because one study showed that it was not prone to causing enteropathy (inflammation of the small intestine), although another study showed it did. I was hoping for the best...:rolleyes: Unfortunately, it appears to be just as bad an actor for me as ibuprofen. Another thought I had from reading the scanty literature is that the damage may be primarily caused by a direct toxic effect of the drug on the mucosa of the small intestine. If true, then IV (or transdermal) administration, should not be as damaging as oral. I'm still not certain on this issue, but recently noted an increase in bleeding after I took a dose of IV ketorolac (Toradol). So, now I no longer trust that bypassing the gut will prevent small intestine damage by NSAIDs.
     
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  15. Wonkmonk

    Wonkmonk Senior Member

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    Great to hear that you got better, @CatMad :thumbsup:

    May I ask:

    Are you taking the standard Pridgen protocol as described here on PR (i.e. 250mg Famciclovir twice a day plus 200mg Celecoxib twice a day)?

    How long did it take until you felt an improvement?

    Did you have an initial worsening before improving?

    Did you take anything for gastric protection (e.g., grape seed extract or proton pump inhibitors have been mentioned by @Hip in another thread)?
     
    CatMad likes this.
  16. SueJohnPat

    SueJohnPat Sue

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    I think Pridgen recommends that this combo be taken indefinitely. For the reasons you stated above and others I do not think nsaids are a safe choice to take for long term use. My blood pressure was high after 6 months on Celebrex. NSAIDs affect the liver and kidneys also.
    Cox 2 selective were developed to lessen the go effects of nsaids but this was not entirely successful and came with other problems ( bextra vioxx)
    I actually use tramadol for pain . I still have pain if exposed to “ mold”. I think for me it is a safer alternative to nsaids in my case ( I am not prone to addiction)
    Still need 1 tramadol a day .
    Still have issues but it is better than taking fentanyl and oxycodone before I discovered the protochol.
    I got the maximum benefit after 6 months. Celebrex has a good safety profile as long as you are not allergic to sulfa.in my case the benefit ( no longer in severe pain for the rest of my life ) outweighed the risk, There is always a risk. I believe that you could take it for only a short amount of time for most it would be not a huge long term risk.
    I was a pharmacist for 23 years before becoming disabled and there are a lot of drugs that are overused and used longer than necessary. PpI .s , statins , antibiotics. Tylenol all overused and cause problems which medicine is finally starting to address.
     
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  17. Wonkmonk

    Wonkmonk Senior Member

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    I am wondering what else one could do for gastric protection.

    I found the following:

    - Grape seed extract
    (https://www.ncbi.nlm.nih.gov/pubmed/23710308)

    - Linoleic acid, e.g. Grape seed oil, sunflower oil
    (https://link.springer.com/chapter/10.1007/978-3-642-75858-4_4)

    - Blackseed oil
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2702910/)

    - Licorice root powder or extract
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673944/)

    - Proton pump inhibitors

    - Vitamin C
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884640/)

    - Vitamin E
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2517694/)

    - Eradication of helicobacter pylorii if infected
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1884640/)

    - Probiotics
    (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422810/)
     
    Last edited: Jul 7, 2018
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  18. CatMad

    CatMad

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    I do a lot of intermittent and longer fasting due to persistent high insulin levels despite keto or very low carb diet - as such I don't tend to take the Celebrex religiously as I won't take it on an empty stomach. I've noticed whilst off it that my pain increases again, but is more localised (mainly lower back). To be honest, I would say I don't take it more often then I do. Maybe a 35-40% overall rate.

    I started noticing less pain within ten days of taking the Cymbalta, and more bursts of energy/clearer thinking/less fatigue about three to four weeks after starting the Pridgen protocol. I had to be wary of pacing myself, but what I found was longer and more frequent periods of feeling good, as opposed to a constant feeling of wellbeing. I also noticed differences in my fatigue levels within about ten days of Pridgen - starting to feel distinctly tired at the end of a day, rather than just overwhelmingly tired all the time, with no distinct ups and downs.

    I don't believe I have had any worsening of symptoms.

    I don't take any gastric protection, but have used grape seed in the past and think ill add it back in.

    Hope this helps!
     
  19. Wonkmonk

    Wonkmonk Senior Member

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    Many thanks @CatMad. This is very interesting.

    This study suggests that you can't do it with a simple water solution, but a viable gel-based product may be on its way. Bioavailability is said to be comparable to Celebrex in capsule form.

    https://www.ncbi.nlm.nih.gov/pubmed/27914040
     
  20. Hip

    Hip Senior Member

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    Interesting. The study says that celecoxib is poorly soluble in water (and this usually reduces the absorption of drugs in general).

    However, celecoxib seems to be soluble in ethanol (100 mg of celecoxib will dissolve in each 1 ml of ethanol), and quite soluble in oils (36.4 mg/ml for olive oil for example), according to this paper (see Table 1).

    So the fact that the skin contains some oil anyway on its surface might promote the absorption. But you could also dissolve powdered celecoxib into some oil like Baby Oil, and then apply to the skin, and that should absorb better.

    Note also that with the approach I used, which was to apply celecoxib powder to a large area of skin, that will increase the absorption (the larger the large the area of skin you use, the better the transdermal absorption).


    Of course you will only know for sure how much you are absorbing if you perform a pharmacokinetic study, in which you apply celecoxib to the skin in a suitable carrier oil, and then measure the celecoxib concentration achieved in the blood.
     
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