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Tagamet (cimetidine) for CFIDS (worked for me)

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

  1. talkingfox

    talkingfox Senior Member

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    I second what Michelle said. I'm also taking this under my docs supervision and he set my dosage. It's also the only pharm. thing I take barring the occasional Ultram. Shoot, I don't even take NSAIDS if I can avoid them ;)

    Faith, your concern as well as the info is appreciated!
     
  2. cfs since 1998

    cfs since 1998 *****

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    Me too. Thank you so much for the info, and I am definitely being cautious with the dosing. It is just really sad that this possible treatment has been completely forgotten about. I wonder if I took tagamet when I first got sick I could have avoided the past 12 years of misery? In CFS we have so few options we can't afford to let the scientific community just forget stuff like this!
     
  3. faith.hope.love

    faith.hope.love Senior Member

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    I understand. I've had this illness for about 15 years now (unsure when it actually started), so I've been through the gamut with antivirals, vitamins, supplements, and medications. You're right, you just have to figure out what works for you, and I'm glad you all found this useful. By all means, take care of yourselves.

    For others who are interested in starting out slowly, I can tell you about my own experience. I never had any side effects, except when mixed with other drugs that interacted. (I take migraine medicine and muscle relaxants, not a good combination!) I just gradually felt better over a period of 2 weeks. My muscles stopped hurting, the fevers went away, the night sweats finally stopped, my mouth sores and tongue lesions disappeared, my clarity of thinking improved, and I finally had energy to get out of bed and do my daily activities without feeling like I just ran a marathon. There was never a time where I felt worse before getting better. I don't know if that's related to my dose, to my condition, to the doxycycline, to my other supplements; it could be anything. My experience is, of course, unique. Yours will be too. It makes me sad to think of someone feeling groggy and sick, but as long as you're strong in spirit and gentle with yourselves, I am cheering you on. I'm very excited to hear how everyone's doing, so please keep us posted.
     
  4. faith.hope.love

    faith.hope.love Senior Member

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    One more thing, do any of you take Flexeril? I take 2.5 to 5mg to sleep, and it knocks me OUT. It puts me in a very deep, relaxed sleep. I was prescribed that for muscle spasms, but my neurologist suggested taking that dose at bedtime for better rest. It really helps on those nights when I just can't seem to relax. (That "tired but wired" feeling.)
     
  5. xlynx

    xlynx Senior Member

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    Please keep posting the updates, Im loving this post!!!

    Just wanted you all to know you had a fan :) .
     
  6. Andrew

    Andrew Senior Member

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    FWIW, I found a page about H2 blockers. It is not in terms of CFS, but it does talk about reactions and cautions.
     
  7. julius

    julius Watchoo lookin' at?

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    Man!! you guys are the Rx Commandos. This is great!!
     
  8. julius

    julius Watchoo lookin' at?

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    Are you guys getting your Tagamet OTC, or script? I tried looking for it in Canada, at london drugs and can't find it.

    Any updates on ur progress?
     
  9. faith.hope.love

    faith.hope.love Senior Member

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    I'm taking the OTC generic cimetidine.

    By the way, I just saw my gastroenterologist today. He wants me off the cimetidine, he felt that was too much since I'm already taking Nexium twice a day. I didn't bother to explain that I'm taking it for 3 purposes (for acid reflux, PCOS, and CFIDS) because as a GI specialist, he would have no clue what I'm talking about. I forgot to ask him about the levels of stomach acid and HCL supplements-- someone asked me about that, and I said I would ask him. (I certainly don't need any more HCL! I still have acid reflux despite all this medication.) Anyway, he didn't explain why he wanted me off the cimetidine, but I assume it has something to do with digestion. I can't remember to ask questions when someone is pressing on my stomach and standing over me, sorry!:ashamed:

    Edited to add: The acid reflux I'm experiencing now is from the 4 courses of antibiotics I took when I was sick. I've been taking the Culturelle Probiotic, which is also supposed to improve immune function. This may have played a role in my recovery. http://www.culturelle.com/
     
  10. m1she11e

    m1she11e Senior Member

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    Faith,

    Sorry he wants you to stop since the cimetidine seemed to help you so much.

    The whole acid reflux thing is quite confusing. I know alot of people who used Nexium and such with results for awhile and then they stopped working. Most of the time they did better after they weaned off the proton pump inhibitors and actually started taking digestive enzymes with HCL. That is when they finally stopped getting heartburn. I know it sounds backwards. Maybe you have read all about that. If not, I can provide you with some links.

    Some one asked for an update. I dont really have any changes today. I am continuing on about 400-600 mg per day. Neuro symptoms are about the same. I dont feel more tired than normal. I slept really well last night but did not wake up feeling drugged like those few days on the Tagament. Just normal CFS today...
     
  11. faith.hope.love

    faith.hope.love Senior Member

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    Oh I didn't plan on listening to him. Ha! I'll cut back on the Nexium, but I'm still going to take the cimetidine. I've been taking it about every other day, and I haven't had any hint of a shingles flare this week. :)
     
  12. m1she11e

    m1she11e Senior Member

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    Yea...Ive been known to not listen to a doctor or two in my time either. Great news with the lack of shingles!!!!
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    tagament also increases the blood levels of some other meds, so maybe it has worked by increasing the blood levels of doxycyline u were on. I have used another med probenecid with av's to increase blood levels of the av's i was on. both meds are commonly used to enhance other meds too. But articles u have mentioned are really interesting, thanks for that
     
  14. cfs since 1998

    cfs since 1998 *****

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    I'm still having a little trouble sleeping so I think I might go down to 100mg every 12 hours. I feel like it's working and it also seems to make the olive leaf work better. Also, the past few days I've been having a pretty severe "antiviral headache" right after eating my large meal of the day. I found out that cimetidine has a double peak of blood concentration, the second peak being prompted by eating/digestion.

    OTC. The generic name is cimetidine. I had to look at the packages closely, they just sad "Acid Reducer" with cimetidine in very small print.

    Also I didn't mention this before but with the first three or four doses I had an acid reflux feeling after each dose. Seems paradoxical.
     
  15. julius

    julius Watchoo lookin' at?

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    Hey CFS since,

    Yeah, I looked for cimetidine. But I found out since that it is actually script only in Canada. I'll keep watching you commandos for a while and if it looks good maybe I'll do a little cross border shopping.
     
  16. talkingfox

    talkingfox Senior Member

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    okay update here since you asked.

    I feel like I've been hit by a viral bus. Headache, body aches , lowgrade fevers. DIE ya b------ds!

    On the good side the neuro pain in my feet and legs is decidedly better, zero fasiculations (I get those all the time usually) and no spasms. Things have settled to a rather maddening internal itch where they were burning.

    Now bearing in mind that I've been completely without any sort of treatment for a very long time, I can only see this as a healing crisis, given the rapid improvement on my neuro symptoms. Doc said that this should be the worst of it if I am indeed having a herx and I should start improving within a week.
     
  17. m1she11e

    m1she11e Senior Member

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    Interesting Talkingfox...

    I dont understand while on anti virals, or antibiotics, or even RX immune stimulants, they are told they may have Herx symptoms for months. If there are "bugs" dying because the immune system is now working to get them, wouldnt the herx be just as variable? I would think it would depend on how depleted the T cells were and how big of a viral load you have. Im just saying I would think the herx would have peaks and valleys like all other anti viral protocols???? Does that make sense?

    Im not feeling too bad today. I dont feel like I am being affected either way. Not to say that it isnt having an effect, im just not feeling anything out of the norm right now. Of course I did back down on my dose after the original drugged feeling. I know that there are different opinions on dosing but they did uses 1,200 mg a day on the HIV patients that improved within a couple of weeks. I think you need to keep it high enough to do some good without causing too many problems.
     
  18. Terri

    Terri Guest

    Thanks for all the great info posted here. I am going to start up with this tonight and will be starting with 200 mg.
     
  19. talkingfox

    talkingfox Senior Member

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    Yeah that makes sense to me m1shelle. I notice my doc said that I should be feeling better, not that I would. I think you're a few days ahead of me in the treatment. I'm just going to keep on keeping track and noting where there is improvement and when and where there are 'valleys' and kind of look at the overall trend. That and continue of immune and mitochondrial supports :)
     
  20. cfs since 1998

    cfs since 1998 *****

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    Day 10 summary:

    My sleep has improved somewhat, and is characterized by very deep sleep, sometimes with vivid dreams and night sweats, interspersed with excess awakenings and restlessness. The excess fatigue/groggy feeling only lasted about 4 days and is basically gone. I continue to have the characteristic (for me) antiviral "herx"--headache and TMJ symptoms. It seems to happen about 3-5 hours after my daytime dose. Of all the things I've taken, the Tagamet seems to be causing the second-worst herxing I've had (after olive leaf), possibly a good sign that it's working.
     

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