Tagamet (cimetidine) for CFIDS (worked for me)

[faith.hope.love]

I've followed this thread with great interest then I read the last post by talkingfox and my heart sunk. I have to eat every 3 hours and the only way I can sleep for about 6 hours in a row without eating is if I eat right before I go to bed.

You may be able to continue your normal eating patterns. I take it without regard to food, and I've had no problems with digestion. I can't speak for everyone, but just give it a shot, and see what works for you.

This is the first time I've gotten a canker sore (aphthous ulcer, not cold sore) and sore throat since starting the Tagamet treatment. I know what triggered it -- I went tanning. I ALWAYS flare with UV exposure, but I was hoping the Tagamet would ward it off. The ulcer already healed quite a bit overnight, so it's safe to say the Tagamet shortens the duration and severity. I don't feel sick. Normally a flare like this would last at least a week with several mouth ulcers and fevers. I feel fine, but I should probably stop tanning.

 

[talkingfox]

I've followed this thread with great interest then I read the last post by talkingfox and my heart sunk. I have to eat every 3 hours and the only way I can sleep for about 6 hours in a row without eating is if I eat right before I go to bed.

Just because that's how I do it doesn't mean YOU have to do it that way . That particular schedule works for me. I'm sure that you could tinker something around your personal schedule/needs/symptoms range.

I'm not a doctor and I don't even play one on television.....Just sayin'

 

[starryeyes]

Hi, thanks for answering me. Sorry about your flare faith, canker sores are the worst. For a sore throat I drink Throat Coat Tea by Traditional Medicinals with a little honey if it's really sore. Most stores in the U.S. carry that brand.

IBS is one of my biggest problems and is one of the main reasons I am intolerant to meds. I'll keep Tagamet in mind and I'm still very interested in following your experiences with it in this thread but I'm holding off on trying it as I know what kinds of problems I have with medications and my digestive system.

tee

 

[creekfeet]

Got as far as page 11... can't absorb the more technical bits of info but I'm going to try Tagamet. It seems like a good time for it; it's readily available; I'm not taking anything else so no interaction fears; and my kid is so sick I want to go ahead quick as I can and be a guineapig.

I'm starting 200mg daily, beginning tonight. I'll post from time to time here, and let you all know how it goes.

 

[faith.hope.love]

Good deal! I temporarily up'ed my dosage to 400mg because I have a sunburn, and that seems to ignite the whole inflammatory response that triggers my flu-like symptoms. So far I'm feeling great. Just burnt.

 

[creekfeet]

9 Days on Tagamet

The first two nights I took 100 mg: half a tablet. No adverse reactions, so I upped it to 200 mg. After one week on 200 mg/day, I notice only very small and subtle changes.

The most noticeable thing is the return of vivid dreams. I always had vivid dreams before I became ill. Perhaps this indicates that Im getting deeper and more normal sleep. I do, however, continue to wake fairly often. But I fall asleep again quickly, and I dream. Even after a very active day, which usually would give me a very restless night, I got a good amount of sleep.

The only other noticeable change is I forget. Oh, yeah, thats right. :blush: A bit of flatulance. So I guess it is interfering with my digestion.

I do not, so far, notice any increase in energy or decrease in pain, or any decrease in recovery time after activity.

The dreams seem like a good sign, so Im tempted to try increasing the dose, but the digestive troubles are troubling and I wouldnt want them to increase. I mean, one thing I dont need is to get less nutrition from what I eat. I could try adding in pineapple papaya enzyme pills, though.

What do you think? Increase the dose, maintain the same dose longer, or abandon the experiment? In just over a week Ill be having to report in to my new internist, and let him in on what Ive been trying and why. Might as well go for a higher dose and have more to report, good or bad, eh?

 

[julius]

Seems to me that the people on this thread having good results are the ones on the lower dose. This treatment sounds similar to other ones which are ineffective at higher doses. I think you should stay on the lower dose.

I wish I could get it in Canada. It sounds like a promising treatment.

Good luck.

 

[susan]

I thought it might help with my gnawing stomach ...burping and nausea, but alas No. I took 40mg twice a day. I am not finding any difference otherwise, still waking thru the night, no other signs of anything good happening after 2 wks. Dont know what to do.

 

[creekfeet]

Thanks, julius, and sorry you can't get it up there. Should we mail you some?

40 mg seems like a super-low dose. Did you leave a zero off that, susan? The tablets I have, over the counter, are 200 mg and I broke them in half to take just 100mg the first two days. If you're on 400 mg 2x/day maybe that's too much?

 

[talkingfox]

Seems to me that the people on this thread having good results are the ones on the lower dose. This treatment sounds similar to other ones which are ineffective at higher doses. I think you should stay on the lower dose.

I wish I could get it in Canada. It sounds like a promising treatment.

Good luck.

Well not ALL are getting benfit on lower dosages :Retro smile:

I started getting the better part of the benefits starting at 600 mg a day. I could feel a difference at 400, but the benefit increased when my dosage did. The dosages in the cancer and HIV studies were in the 1000-1200 range.

So far the only digestive disturbances I've had are a bit of gas, no biggy. On the plus side it seems to be shifting my hormones a bit , which is a good thing. It's an androgen antagonist and my hormones are jacked to the hyper-androgenic side. I'm starting to drop some weight and some of the hair I've lost is growing back. I call that a win/win.

 

[IntuneJune]

I am guessing many of your have read a book, got half way through the book and realized you read it before.

This morning I started reading the thread, and after a GOOD while, got the feeling I read it before. Then I read post #135 re: lamenting on the complexity of the post, yady, yady, yady and (I believe time involved), and I am thinking "YES" that is how I feel, so I looked over at the poster's name......... it was me. Over two hours this morning I have spent visiting with all the wonderful folks who have given their time on this thread. Thank you,

But I am still confused.

I do have an immune deficiency, IgG subclasses. I do not build antibodies when given vaccines verified by before and after labs. This of course can throw off other diagnostic lab tests looking for antibodies. I am very susceptible to respiratory illnesses due to a depressed immune system.

I do have alllergies indicative of a heightened immune system. I have a number of diagnoses for auto-immune issues.

For 30 years I have been working with the diagnosis of fibromyalgia, the knee-buckling drop-dead exhaustion, also present at that same time, was helped with allergy testing and treatment.. anytime I stop the treatment... it becomes worse. Since these symptoms were "controlled" (sort of) with allergy treatment, I was never given the diagnosis of CFS on my medical records. Still have the exhaustion, night sweats, day sweats, flu-feeling yady, yady.

I am not alone in this clinical picture, but as I was reading this thought-provoking, educational thread, I was trying to sort out immune issues with auto-immune issues and IF that made a difference, what difference it would make as far as the Tagamet goes.

Before I run, just wanted to add, you are an awesome group of folks, thank you for sharing your knowledge, energy and time.

Much appreciated, June

 

[creekfeet]

TFox, I guess I'll try bumping it to 400 then since the changes so far remain very subtle.

June, you've managed to read much more thoroughly and analytically than have I. I read as much as I could of the thread, read what I was able of the linked articles, and after a few days of stopping in to read again, had the vague feeling that Tagamet would be good to try and couldn't hurt.

I hate operating on such a vague brain! In a week I need to read again and figure out a way to tell my internist why I thought it was a good idea, in terms he'll accept. Arrrgh.

 

[IntuneJune]

Creek Feet, yes, the vague brain surely complicates things, making everything so much more difficult ROBBING already-depleted energy stores, just two examples I find so frustrating and wasteful: much time (energy) spent looking for an item I cannot find it only to find it where it belonged in the first place, and the deductive reasoning and comprehension impairments. Enough said.

The immune system is so complex. Immune responses versus auto-immune responses and how they are connected, or how one affects the other. Way back when I was first diagnosed, (approximately 30 years), I was headed for I believe residence in my bed. Then the allergist worked on my allergies... I found strength again. Now at this time my diagnosis was fibromyalgia. (Or fibrositis then----the name of the syndrome was changed later to better represent the symptoms.)

So did addressing the auto-immune response free up energy for the immune system to work on "whatever."

Initially I worked with the rheumatologist, she was shooting blindly back then, there was no internet for me for, and not much in the way of literature for her, but we tried the latest theories over the years. I did not do well on what we tried and eventually I decided to take a wait and see approach. Still had the exhaustion, (not the knee-buckling, drop-dead variety) and the pain in the tender points and the all over muscle aches.

Over time more auto-immune issues developed.

I do not know when my immune system failed, but it is the reason I had pneumonia, bronchitis, recurrent sinusitis problems and that started 12 years ago. The immune deficiency was discovered only four years ago.

Following along on this thread, while I was reading I kept thinking, wow, they are onto something here. I just cannot figure it out but think it is there!


June

 

[jackie]

Hey Creekfeet, F.H.L., June, Talkingfox, Julius, Susan, everybody...Finally, after several weeks of waiting for a respite from oral surgery infections, crashes, never-ending shingles - just so I could begin my "Tagamet Project"...I started it anyway! Checked with my Doc - definitely wants me on 800mgs per day until further notice - well, ok!

Today - the first 400mg. dose, along with my usual 3200mgs Acyclovir. (Infection is over, shingles/crash - not! figured I couldn't feel much more wonky than I do already, so why not?)

Tomorrow - I take 800mg...and I'm not stopping until I see some improvement, gosh darn it!

jackie:Retro smile:

(so far, it's like watching paint dry)

 

[talkingfox]

Tomorrow - I take 800mg...and I'm not stopping until I see some improvement, gosh darn it!

jackie:Retro smile:

(so far, it's like watching paint dry)

:tear: yeah...slow it is. but then again it takes time to rebuild an immune system. The HIV and cancer studies went on over MONTHS. I'm still seeing some improvement bit by bit. But it is indeed bits. I want instantaneous and dramatic dammit

 

[susan]

I am just recovering from taking Tagemet for 2 wks. it is now more than obvious I cant detox drugs and other stuff. I thought I was going to die last night with chronic nausea and burping. I have been doing the methylation for 2 mths now so thought I might try a drug again to see if it could lift my immune system and maybe this particular drug alleviating my daily battle with milder burping and nausea. At least I gave it a go....long way ahead for me yet to be able to detox.

 

[IntuneJune]

Jackie, good luck.

Susan, you were brave though to give it a go. I guess this is the only way we are going to know.

June

 

[faith.hope.love]

Hello everyone... didn't realize I had missed so much. I subscribe to this thread, but hadn't received any alerts. I'm still doing 200mg/day, and have had NO signs of CFIDS or shingles since I last updated. Granted, I still wear out quickly, but as far as everything else goes, I am 100% recovered from the relapse I had August through January. I'm functioning at an 80-90 on the Bell scale. I just accepted a new job, and start full-time work again on Monday. Looking forward to having my life back.

 

[cfs since 1998]

Hello everyone... didn't realize I had missed so much. I subscribe to this thread, but hadn't received any alerts. I'm still doing 200mg/day, and have had NO signs of CFIDS or shingles since I last updated. Granted, I still wear out quickly, but as far as everything else goes, I am 100% recovered from the relapse I had August through January. I'm functioning at an 80-90 on the Bell scale. I just accepted a new job, and start full-time work again on Monday. Looking forward to having my life back.

That is great news. Congratulations! What is the longest period of time you've been sick?

 

[faith.hope.love]

That was the longest, Aug through Jan. Normally, I would only have relapses that lasted a few days to a few weeks, and those relapses would occur once every 2-3 months. So time will tell. I'm sure I will always have to make accomodations to keep up with everyone else, but at least I can go back to a somewhat normal life. I'm still too tired to exercise, and I still need caffeine, but I've been able to stay upright without POTS symptoms for much longer than a few months ago. I feel really well.