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Tagamet (cimetidine) for CFIDS (worked for me)

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

  1. faith.hope.love

    faith.hope.love Senior Member

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    No, I didn't start it until well after I finished the doxycyline. The whole reason I started it was because the doxy left me with horrible gastritis. I had the cimetidine on hand because I've taken it for PCOS symptoms in the past. I started researching the drug's anti-androgen effects (because my breasts grew a cup size in one month - bonus), then stumbled upon the research in shingles, HSV, and CFIDS. I continued to take it daily (or every other day) and had wonderful results. That's when I came here to share with you fine people. :)
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good to see it has helped you, might not be too good for men then if it lowers androgen levels then. Lowering androgen levels in men could increase our cup size as well estrogen could possibly become the dominant hormone.
  3. faith.hope.love

    faith.hope.love Senior Member

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    And just a little update on how I'm doing. I've been taking the cimetidine for about 6-8 weeks now. (Hard to remember the exact start date because I wasn't taking it every day at first, and didn't realize it was going to make any difference.) I've been through severe emotional stress, a TON of physical exertion this past month, and have not had a full-blown flare yet. I've had a few low grade fevers, felt like I was GOING to flare, but I never did. Usually after ANY physical exertion, I would always get a mouth full of canker sores, sore throat, fever, and swollen glands. I haven't had any of that. I'm now taking the cimetidine 200mg every 2 days, as long as I haven't taken anything that will interact with it.

    If anyone's curious what else I take that might have contributed to my recovery, I WAS taking valacyclovir 2000mg daily for recurrent shingles (and by recurrent, I mean it flared up about once a month). I don't know if any of you have had shingles, but for me it caused numbness in my arms and legs, blurry vision, fevers, night sweats, muscle aches/spasms, and back pain. The skin over my entire body was hypersensitive, so that even a light touch felt like someone had punched me. Once I added the cimetidine, all of that stopped 100% and hasn't come back. Now I only take 500mg valacyclovir daily, sometimes twice daily if I overexerted myself that day. I have NO post-herpetic neuralgia whatsoever. My skin is normal again. You can tap my shoulder without me crying out in pain. :) Sometimes if I get a low grade fever or that tingly feeling on my back, I just take a Tagamet/cimetidine and an extra valacyclovir, and it stops.

    I USED to take Provigil for energy, but did you ever read the side effects of that drug? Fever, chills, flu-like symptoms, herpetic lesions and cold sores? What good is staying awake if it trashes your immune system? It obviously has an effect on viral activity or immunosuppression, so I ditched that drug. I wasn't taking it very often, maybe just once a month, but I noticed it triggered a flare each time. (I keep a flare diary.) Tanning beds and excess sunlight also trigger my flares, probably because viruses in the herpes family are triggered by UV rays. Interesting to note that people with MS also flare in sunlight, and they're believed to have high levels of HHV-6. So watch your sunlight exposure if you're anything like me. :Retro smile:

    Hope this helps someone.
  4. julius

    julius Watchoo lookin' at?

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    faithhopelove,

    This is really starting to sound promising. I'm so happy you are doing so well.

    I haven't been able to find very good info on Zantac or (i forget the name of the other one). What do you guys think? I can't get Tagamet in Canada, are the others worth trying?
  5. faith.hope.love

    faith.hope.love Senior Member

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    I would definitely give the Zantac (ranitidine) a try. I really wanted to ask my doctor about Pepcid (famotidine) but when he told me to get off all those GERD meds, I figured he would say no. :) You may not get the antiviral or anti-retroviral effects with ranitidine but it should still work as an immunomodulator for your T-cells, if I am understanding the research correctly. Dr. Goldstein said the T-suppressor cells have H2 receptors on their cell surfaces, and were thought to be activated by histamine. Thus, they would be inactivated by an H2 blocker. Going by that logic, it seems like ANY H2 blocker would work.

    Some of the other people on here are going by the AIDS research and treatment with Tagamet, but I haven't researched that enough to comment. I'll have to look into that. I have the opposite problem of AIDS, my immune system is overactive and doesn't know when to quit. I have to steer clear of anything that "boosts" the immune system, according to my Rheumatologist. My immune system doesn't need any more help attacking anything, it needs to "shut off" when it's supposed to. From what I understand, cimetidine and ranitidine can help regulate those T-cells, so that whole inflammatory response is slowed or controlled. I think the reason this drug only works for 20% of people with CFIDS is that we all have different viruses, different disease processes -- some have XMRV, some don't. Some have immunodeficiency, some have autoimmune, or overactive immune systems. This disease has so many faces, so it really just boils down to trial and error.

    I've trialed enough to know that I feel wonderful when taking steroids because they suppress my immune system, but they also make me gain weight, tear up my stomach, lead to bone loss, and they're REALLY hard for me to wean from. My immune system rebounds drastically with the most severe migraines (like a meningitis headache), rashes, and allergic reactions to EVERYTHING. Even my skin that is tattooed will swell up when I am weaning from steroids, apparently from an ink allergy(?). It never swells up any other time, just when weaning from dexamethasone or prednisone. Figured it wasn't worth the trouble if I can't stay on them long term.
  6. m1she11e

    m1she11e Senior Member

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    Faith love (or anyone)
    Im confused here. This is a quote from one of the links from LEF. (I think it is one of the original ones you posted)

    " What most doctors don't know is that T-lymphocyte suppressor cells have the H2 receptor. By blocking this receptor (using an H2 receptor antagonist such as Tagamet), the immune system can be temporarily turned up to help combat certain cancers and herpes viral infections."

    I understood this to mean that this is allowing T cells to stay more active and able to go after virus' and such. It ramps up T cells because the T suppressor cells are being blocked and more T cells are out staying around fighting the good fight. The articles do talk about other ways it is an immune modulator but it mainly is an immune stimulant.

    So, how are others interpreting this information? :confused:

    Michelle
  7. cfs since 1998

    cfs since 1998 *****

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    The same way you are...plus it might have direct antiviral effects.
  8. m1she11e

    m1she11e Senior Member

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    Thanks CFS since. I got really concerned I was reading it wrong and suppressing my immune system. That I dont need!!!
  9. faith.hope.love

    faith.hope.love Senior Member

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    When I read that article, I looked up "T-suppressor cells" and was directed to this passage on Wikipedia: http://en.wikipedia.org/wiki/Regulatory_T_cell

    "T regulatory cells are a component of the immune system that suppress immune responses of other cells. This is an important "self-check" built into the immune system to prevent excessive reactions. Regulatory T cells come in many forms, including those that express the CD8 transmembrane glycoprotein (CD8+ T cells), those that express CD4, CD25 and Foxp3 (CD4+CD25+ regulatory T cells or "Tregs") and other T cell types that have suppressive function. These cells are involved in shutting down immune responses after they have successfully tackled invading organisms, and also in regulating immune responses that may potentially attack one's own tissues (autoimmunity)."

    I personally have too many T-cells, but most specifically, "CD8+ excess." They even checked how my CD8 functions with other components of my immune system, but that's way out of my scope of knowledge. If I am suppressing their "overreaction" to a virus, the rest of my immune system can get a handle on the infection without causing the full-blown inflammatory response and flu-like illness that you see in shingles, HSV, chronic EBV, etc. So (in my case), by suppressing ONE function of the immune system, you're thus ENHANCING the other components of the immune system so they can work together properly. Obviously you don't want to completely knock out your CD3, CD4, etc. -- you wouldn't have any immune system at all. AIDS patients have low CD3, CD4. The lower the number, the faster that person dies because they're left wide open for infection. My CD3, CD4 are elevated. From what I understand from my Immunologist, my T-cells kinda run around all crazy, waking up latent viruses because they can't "turn off" their inflammatory response and don't know when to quit. They DO eventually quit because so far they haven't attacked my organs or my brain and spinal cord, ruling out Lupus and MS. They are just dysregulated, which is the "immune dysfunction" part of CFIDS. So that is why cimetidine works as an immunomodulator in my case. It REGULATES the immune system so it can "turn off" the attack when the virus is under control, and it can fight off "invaders" without wreaking havoc and reactivating other latent viruses. That was my interpretation. I think if you already have normal T-cells and aren't experiencing the reactivation of latent infections with an exaggerated inflammatory response, cimetidine may work in OTHER ways for you -- it says it works by many different mechanisms. But unfortunately, I only know how it has helped me.

    Notice I've said that the inflammatory response is slowed or controlled by whatever mechanism with cimetidine, not that I am suppressing my immune system's ability to fight off infection. I also want to mention for anyone else reading, please don't confuse my use of cimetidine with my use of steroids. Those were for 2 very different illnesses, and work in very different ways. I wasn't making recommendations for immunosuppressants by any means. I was just saying that I, personally, feel better when that inflammatory response is suppressed, which explains how my situation is unique. My methods of treatment will vary widely from those of you with immunodeficiency. My hospital participated in the XMRV study with WPI, so my doctors check for things that other doctors may not look into. The tests that were performed on my immune system and in hemodynamics aren't available in all labs or hospitals, so my course of treatment may be very different than someone who's seeing a naturopath, for instance. I just hope we're onto something here.
  10. m1she11e

    m1she11e Senior Member

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    So, what I get from this great information (thanks Faith) is that we are increasing active T cells by blocking the T suppressor cells. We are making T cells more active and hanging around longer. We are not allowing the suppressor cells to "turn off the attack."

    That would mean if you have too many T cells, this could be not so good for a person. If they need more T cells then this could quite possibly help. I also understand that there are components of Cimitidine that no one quite understands.

    I will give it a few more weeks. I dont expect to feel any better or worse at this point. It seems CFS since is a barometer for whether something has viral killing ability or not. ;)
  11. faith.hope.love

    faith.hope.love Senior Member

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    No, we ARE allowing the suppressor cells to turn off the attack, but I'm not sure if that's what you meant. Maybe you meant without cimetidine. It's confusing, but this quote from the Wiki page might help. "These cells [Suppressor T-cells] are involved in shutting down immune responses after they have successfully tackled invading organisms, and also in regulating immune responses that may potentially attack one's own tissues (autoimmunity)."

    (removed my comment to prevent confusion. Not sure if I am interpreting that correctly. Immunodeficiency and autoimmune are overlapping in my mind.)
  12. faith.hope.love

    faith.hope.love Senior Member

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    One more thing -- I think a healthy person can have an excess number of T-cells, T-suppressor cells, whatever -- and still be healthy. The fact that we have a disease -- whether it's caused by XMRV or something else --makes OUR cells react differently. If we all had normal immune reactions, I guess none of us would be here. That's the missing piece of the puzzle. Viral reactivations normally should not occur in healthy immune systems. We can block the histamine all we want, but until they find a cure for CFIDS/ME, we will have a constant battle on our hands.
  13. cfs since 1998

    cfs since 1998 *****

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    I appreciate your efforts, but I believe you have that backwards. T-suppressor cells suppress the immune system. T-suppressor cells don't fight, there is no such thing as a T-suppressor cell in kill mode because they can't kill anything. Only cytotoxic T-cells kill. An H2 blocker like cimetidine would prevent the immune response from shutting off prematurely, and would enhance cell-mediated immunity. But you wouldn't want to take cimetidine if you had an autoimmune disease because it would make it worse.
  14. talkingfox

    talkingfox Senior Member

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    I have mild psorisis (an auto-immune thing) and I find that I KNOW when my Immune System is kicked up because I get a plaque or two. Cimetidine has definately kicked it up.
  15. m1she11e

    m1she11e Senior Member

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    Okay CFS Since...that is what I thought. I didnt mean to make that so difficult. I am also not arguing, it is just that Faith is having good results but is interpreting the information much different than I am. I wanted to make sure I wasnt too brain fogged.

    talking fox- are you concerned about turning up your immune system since you have auto immune issues with psoriasis already?
  16. faith.hope.love

    faith.hope.love Senior Member

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    I feel like I am not getting through to anyone what I want to say, and this is really frustrating. That's why I was avoiding a very technical conversation. I should have just said "cimetidine works for me," and left it at that like I did in my first post! :D

    T-suppressor cells suppress the immune responses of other cells, they "turn off" the fight -- not that the suppressor cells are FIGHTING the battle, but they TURN OFF the fight when the body should be done fighting a pathogen. It ALL works together as a process. The killer cells can't function correctly without the suppressor cells. There is a whole network of immune components that work together to help the body fight infection. The T-suppressor (regulatory) cells do not suppress your immune system in the way that you will be wide open for infections. I'm saying they turn off the fight when the battle has been won. I know I'm being repetative, but I don't know how else to make this clear. I don't have it backwards, I just don't think I can relay to you what I'm trying to say. And you have to forgive me, it's 10 degrees outside and my furnace died last night. I haven't had much sleep, and I feel like crap.

    Pardon me for saying it takes the "T-Suppressor cells out of kill mode." What I should have said is the T-suppressor cells TURN OFF the "kill mode" of your IMMUNE SYSTEM so that you recover from the illness when you're supposed to, so the immune system (whatever component that may be) isn't going around and reactivating other viruses. I think it makes perfect sense, but I don't think I can make that understandable, and frankly this is giving me a migraine! I don't want to muddy this up, or make it difficult for others (especially with brain fog) to understand. I think we all agree on the same principle, but it's getting way more technical than it needs to be. You've all done your research and you're happy with what you've found, so that makes me happy. I found what works for me, and I'm glad that was able to inspire others. I've got to go work on halting this next flare that's coming on. Hopefully I can nip it in the bud again. (However that may work!)

    I'll just leave it at that -- good luck, I hope it works, and I wish you all the best of health.
  17. talkingfox

    talkingfox Senior Member

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    Not really. My psoriasis is pretty mild. For me it's a matter of trade offs.
  18. m1she11e

    m1she11e Senior Member

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    Faith, Im so sorry about the furnace. You can come stay with me in Florida!!

    We are reading the same information and interpreting it the opposite. I do see how we are reading it different though, and understand what you are thinking. Two great CFS minds ;)!! This mystery has plagued me most of the day. I just want to make sure Im doing what I want to be. I believe I am.

    Well, if its working for you GREAT!!!!
  19. faith.hope.love

    faith.hope.love Senior Member

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    I had to read that over a few times, and now I get it. I can completely see what you're saying. I understand now. A person can have viral reactivations caused by a LACK of an immune system, like an AIDS patient, but it can also be seen in people with autoimmune diseases, like MS. I much more closely resemble MS than AIDS. Immunodeficiency and autoimmune were overlapping in my mind. Maybe I don't understand the mechanism that makes cimetidine work for me, I just know that it does. I'm NOT immunodeficient, never have been. My immune system is completely intact, just overactive and dysregulated. But for whatever reason, the cimetidine has kept the recurrent shingles away, and that makes me feel 10x better. I believe it has helped my overactive immune system regulate itself in some way, which is probably very different than the way it's helping you. (If it does help you, and I hope you have much success.)
  20. Mary

    Mary Senior Member

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    Tagamet can cause depression - faith.hope.love, I'm really glad it helped you so much - my doctor had me try it last year because my immune system is weak. He gave me an article about research which I think showed it boosted killer cell activity, something like that. Unfortunately, after taking it a relatively short while, I began getting noticeably depressed - I googled Tagamet and sure enough, depression was a possible side effect so I had to stop it, could not handle the dark mood it caused.

    Just something to be aware of, but I am very glad it helped you so much.

    Mary

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