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Tagamet (cimetidine) for CFIDS (worked for me)

Discussion in 'General Treatment' started by faith.hope.love, Jan 3, 2010.

  1. BEG

    BEG Senior Member

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    A very cheap Ampligen,

    faith.hope.love, Thanks for starting one of the more fasacinating threads I've read. And I did read it, all of it at one sitting so I'm pretty well zombified right now.:eek:

    This is how I understand things, and please correct me if I'm wrong. With CFS/ME we have overactive immune systems, a mirror image to AIDS. Those patients have an underactive immune system, succomb to disease and die. We, however, just get miserably sick because all bodily systems go out of kilter once that immune system is revved up. The immune system gets into trouble from many sources such as viruses and toxins just to name a few. (See Dr. Bell's book.)

    I don't catch colds, the flu, and other smaller bugs. I asked my CFS specialist why, and he said because your overactive immune system is chewing them up and spitting them out. I do, however, have low normal Killer T cells. My specialist said those are the big guns for the really nasty diseases such as cancer. I've had cancer.

    I don't know what kind of viruses might be lurking in my body because I've never been tested. I don't have GERD, or indigestion. The only other problem I have, other than ME/CFS and the myriad of symptoms that causes, is arthritis. However, when Goldstein suggests something, I take notice. If Tagamet does indeed modulate the immune system, it is certainly a very, very cheap Ampligen.:D

    I will certainly give this one a try after I consult my physician. To everyone who has posted, thank you so much. Those who are on a Tagamet trial, I hope you continue to improve. faith.hope.love, best wishes for a speedy recovery and a real chance at that job. I'm rootin for you, gal.:victory:
  2. faith.hope.love

    faith.hope.love Senior Member

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    Awww, thank you so much! That means a lot to me. :hug:

    I think we're on the same page, I see things exactly as you do. I think there are people who have suppressed immune systems and CFIDS, but I think a larger percentage suffer from viral reactivations from an overactive immune system. And I do think Tagamet can benefit each end of the spectrum! It has truly changed my life.
  3. faith.hope.love

    faith.hope.love Senior Member

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    Just a little update. I had to decline that new job because the health insurance was so poor. With my health problems, I need good coverage. It wouldn't cover some of my important medications like Nexium, Zofran, or valacyclovir. Those are very pricey. (The Zofran alone is $1200 per month.) The policy had a $1000 deductible that had to be met before it would even cover a doctor visit (and my doctor wasn't even on their provider list). Then I would still have to pay 20% of everything after that. I guess that's pretty standard (80/20), but my insurance through my last employer paid 100% of everything. My last hospital bill was over $20,000, and I didn't have to pay a dime. I'm still employed by them (and still insured until May), but I'm on leave of absence. I made some phone calls, and I should be returning there ASAP. I just have to re-apply since my last position was not held. There's always a demand for RNs, so I should be back to work any time now. Luckily I'm still getting my long term sick pay, so I'm doing okay financially until the next job opens.

    ANYWAY -- I was at that last place long enough to receive a tuberculin PPD (Mantoux) skin test. I am having the same reaction to that, as I have to vaccines. My entire arm hurts, I feel generalized malaise, sore neck, headache, and I have a low grade fever. I've been a little nauseated too. My immune system just does NOT like any toxins being injected into my body. I know they say it's totally "safe" and not really absorbed into the body, but tell that to my immune system. It's not a coincidence. So I took an extra Tagamet, and hopefully this "yuck" feeling passes quickly.

    How's everyone else doing??

    Edited to add: AND I just realized that my knee is swollen, stiff, and painful again. The same knee that swelled up with my last relapse when I had that throat infection. I have no idea WHY it swells up, (no arthritis on xray) but it seems to swell up every time I get sick! Grrrr... so angry for doing that stupid skin test. I should have refused it, and told them to check a serum antibody test or something.
  4. talkingfox

    talkingfox Senior Member

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    I seem to have hit a wall with the tagamet faith. I got some improvements, then it seems to have stalled. I most definitely do better on it, but still only functioning at about 30-40%. On the plus side, before I started I was even having trouble getting around the house and was rapidly heading for a fulltime wheelchair. I can get about the house now and can get out for an hour or so at a time without nasty repercussions.
  5. faith.hope.love

    faith.hope.love Senior Member

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    Well that's a significant improvement, but I wish you were feeling better than 30-40%! I'm sorry to hear that your case is so severe. :( Are you going to try increasing your dose? Or add in some antivirals, if you aren't already on them.
  6. talkingfox

    talkingfox Senior Member

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    yeah, me too, but I'll take what better I can get :D Over the decades with this illness I've not always been at this level...this particular flare has been persistent and one of the more severe ones I've had.

    I'm taking 800 mg atm, I have thought about increasing to 1000 and see what happens. I absolutely draw the line at 1200, being as that's the dosage given for a majority of the HIV and cancer study cohort.
    I was on anti-virals as well for a while in conjunction with the cimetidine and doing considerably better while on them. They actually seemed to work in synergy with one another. Unfortunately my Dr. had a spine-ectomy in between visits and was no longer willing to prescribe an 'off label treatment' regardless of how much better I was doing. I fired him.
  7. kat0465

    kat0465 Senior Member

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    Faith,
    cann you tell me what MG you started out with?? when i read your post, i started my daughter on it and me also,she has pcos, and i have cfids. we started about 4 days ago,i take one at night. so far i havent noticed
    a change, but going to hang on for a month or so. is 200mg the normal dose?
    thanks,
    Kat
  8. faith.hope.love

    faith.hope.love Senior Member

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    I have been taking 200mg per day. And I wasn't taking it every day at first. Now I do, and yesterday I took 400mg because I felt sick. It helped a LOT with PCOS symptoms the first month, but not as dramatically thereafter. I still have far fewer PCOS symptoms than before the Tagamet, but the first month I had NONE. Good luck, I hope it works out for you!
  9. jackie

    jackie Senior Member

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    Hi Faith and Guys! I was only on the Tagamet for one week (800mgs.) before my doc had me stop, for the time being. Since I have CHRONIC shingles (in spite of 3200mg. Acyclovir) I'm to "report" any new/unusual symptoms to my doc (in between appointments.)

    I had two episodes where I developed tiny sores inside my nostril, so...never having had this before, I called...doc said (without seeing me) that this indicated another shift in my imune system and the addition of HSV1.

    He said (that in my case) the tagamet would not be strong enough at this point to help me, to stop taking that - and start Equilibrant (starting at a tiny dose but ramping it up as quickly as I safely can). He is still using Tagamet with a lot of his patients, though.

    I'm dreading it (the immune modulator - as I've procrastinated for 3 years!...one excuse after another!)...but I'll go ahead and try. I have a nagging feeling that I won't do "well" on it...but that may just be because my stomach is always such a mess from the high doses of antivirals...and I'm kind of skittish!

    I MAY do just fine!...AND he said I can try Tagamet in the future. I'm so glad to hear all of your successes with Tagamet, I'll keep checking in and one day may be able to join you! (I was very excited about the possibilities - still am!)

    Good luck, all.............jackie:Retro smile:
  10. faith.hope.love

    faith.hope.love Senior Member

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    Jackie, your case seems so unusual, and so severe. I'm sorry to hear about the nose sores, that has to be really painful. I wish they knew more about chronic/recurrent shingles, you really don't see too much literature on it. Please keep us updated on your progress, whether or not you go back on the Tagamet! I'm wishing you a speedy recovery.

    I'm feeling SLIGHTLY better today, but random muscles are in spasm. Still have the headache/stiff sore neck, but I can function at 70-80% like this. I just have to make sure I sleep well tonight, and don't strain myself. I hope this isn't the start of another relapse. I have 2 interviews on Monday, and I need to be well!! I'm going to take an extra Tagamet and extra valacyclovir today, and also some doxycycline. That seems to make the knee swelling go away. I have NO IDEA what could be making my knee swell up whenever I'm sick. That really has me puzzled. It never happened to me until this past November when I was ill. If I can get into see a Rheumatologist while it's swollen, maybe they can "tap" into it, and see what's going on. I had Xrays within the last year, and was told my hips and knees were "perfect" and I'd never need a replacement in my lifetime, so it shouldn't be arthritis. My ligaments are very loose, but that shouldn't be causing swelling like this. CFIDS works in mysterious ways, I guess.
  11. jackie

    jackie Senior Member

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    Faith...previously I never knew one COULD have shingles all the time (before it happened to me!)...but according to my Doc, he has quite a few patients besides me, that do! Of course, he's dealing with Enteroviruses, among other things, so to him, muscle pain/spasms and even swollen muscles/joints point to viral activity. I've gone to his website (EVMED research) where he talks about this (the studies/biopsies etc.)...it's just so hard to make sense of it all.

    Thanks for your good thoughts re a speedy recovery! I wish I had some answers for YOU...I can sympathize with a sore, swollen knee! (I have one that acts up, too...and even after numerous X-rays and even an MRI - nothing shows up!...I'm starting to BELIEVE my doc re viruses EVERYWHERE (although I'd rather it wasn't so!)

    Also...good luck with the upcoming job! jackie
  12. susan

    susan Senior Member

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    My story of my trial of Tagemet has not been good. I found no benefit. It was en experiment to see if my body was still rejecting drugs and this burping that I get.. After 2 wks I began to go weird and get nausea and burping just soooo bad that I stopped it immediately. For 5 days i felt near death and then last Sunday night I emailed my Doc and told him I thought I had been poisoned. He said I was indeed toxic and the Tagamet used the CYP450 detox pathway same as supplements and could not detox the drug.. So he said to take 1 teas of Turmeric in one glass of V8 juice twice a day. The next morn after my first dose I felt I was going to live. Slowly all week I began to recover then on Thurs I got so ill the Doctor put me in hospital as my BP was over 200. I dont know why I was so ill but I kept taking the Turmeric thinking it was giving the liver a good old wash out. Maybe that turned against me too....I over did it..... I dont know.

    On another post someone told me that Dr Cheney said CFS people should not take stuff that uses the CYP 450 detox pathway. What an experience....I still feel awful. I know that I am not a candidate for drugs in the forseeable future.
  13. faith.hope.love

    faith.hope.love Senior Member

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    Yeah that's why I don't think it should be an OTC drug. You can have deadly reactions when mixed with the wrong drugs, or if you have liver problems. I've been very lucky to have no side effects and great benefit. I'm sorry you had such a horrifying experience!
  14. BEG

    BEG Senior Member

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    "On another post someone told me that Dr Cheney said CFS people should not take stuff that uses the CYP 450 detox pathway. What an experience....I still feel awful. I know that I am not a candidate for drugs in the forseeable future."

    Susan, Hope you're feeling better. Your situation triggers a memory. A good many years ago (with CFS), I needed an antbiotic and was given the Z-pack, which consists of 4-6 pills taken 1 a day. I took the Zithromycin as directed and ran into liver problems. (And apparently I wasn't the only one. I googled Z-Pack and lawyer sites came up.)

    Both my primary doc and CFS specialist watched my liver closely with blood tests. I asked the doc what I shouldn't take while waiting for my liver to recover. After reading my medication and supplement list, he said tagamet. It has taken your post after all these years to make sense of that. Thanks for sharing.
  15. susan

    susan Senior Member

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    That is amazing .......we learn so much off each other on the forum. When I went to hospital this week, I stared down the Drs and nurses with my knowledge and did not feel an idiot for a change putting my views across.....such power in that.
  16. IntuneJune

    IntuneJune Senior Member

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    CYP pathway

    OK, I am clueless, what is this and how would we know? Or where do doctors get this info, or do they even consider this????

    Thank you again everyone.

    June
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi June,

    The P450 pathway is the first phase of liver detox. (there are 2 basic phases--each with subsets) P450 is an enzyme pathway that most pharmaceuticals have to pass through on their journey through the liver. It basically works to make toxins water soluble so they can be processed in phase 2.

    It can be tested by specialty labs. Many of us have had it tested at Genova labs with their Detoxification profile. (I just looked at their website and don't see it listed now) The results of this test indicate which classes of drugs are more suitable for the patient, as well as problems with different detox pathways (like sulfation (sp?)

    This can be very helpful to a knowledgeable practitioner (where are they??) :worried:

    This test shows the speed at which the P450 pathway is processing things. If it is too slow (mine is), that brings one kind of detox problem. If it is too fast (and phase 2 is too slow), this is worse as it causes a toxic "log jam" that makes it very hard to process toxins and pharmaceuticals.

    Who'd have ever thunk that little old us would pick up info like this that flies over the heads of most of our doctors!

    Best,
    Sushi
  18. clive powney

    clive powney Senior Member

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    Heapsreal,

    Just noticed that you mentioned you had found a cheap source of valtrex, is it good stuff , and do you need a prescription? Reason I ask is I discussed with my doctor between valtrex and acyclvir and he prescribed me with acyclovir as valtrex was too expensive.
    Also how long did it take for you to notice any difference once on the anti-virals?

    regards

    Clive
  19. susan

    susan Senior Member

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    Sushi,
    You are dead right...where do we find a knowledgeable practitioner. I have just found one after 21 yrs and now he is fighting for his own life. He does not want to die as he says he has so many of us CFS Autism people left to treat. He told me about the 450 pathway. Do you know of any other Lab who can do the test for the detox system from another country. I cant do coffee....that is the one you do here for the test.

    Regards
    Susan
  20. froufox

    froufox Senior Member

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    I'm sorry to hear that u had such a bad experience with the Tagamet Susan it sounds like it was a complete nightmare! I took Tagamet for a few weeks and I also experienced some negative effects from it tho much milder compared to your case but just intuitively I wondered if it might be down to its inhibitory effect on some of the P540 enzymes as I did feel somewhat drugged up on it and just not right basically. Although in my case I did also have some benefits from taking it too like more energy so it was working for me to some extent. Anyway at the time I did some research into it and I found this very useful site that contains quite a comprehensive list of drugs that either inhibit or induce the P450 pathway..

    http://www.edhayes.com/startp450.html

    As u can see Tagamet/Cimitidine inhibits these enzymes.. 1A2, 2C9, 2C18, 2C19, 2D6, 3A4 , and I know that the 2C19 & 3A4 enzymes in particular for example are ones that help to metabolize hormones like cortisone and the sex hormones, progesterone, oestrogen and testosterone so taking drugs that inhibit these particular pathways could potentially cause hormone imbalances/problems too depending on someone's hormone status.

    Anyway as I say I decided to come off the Tagamet in the end as I just didnt feel it was right for me. Hope you feel better soon and hope you manage to find a lab that does the liver function test and it gives you some solid information to go on.

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