Tagamet (cimetidine) for CFIDS (worked for me)

liquid sky

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FHL, what does the doctor think caused your symptoms to begin with that caused him to put you on stimulants and depressants at the same time? I've just read this entire thread and I was quite hopeful for you to get back to work and all. I am an R.N. also, but disabled with ME.

Did you go off the Ativan abruptly to cause the withdrawal? I have heard horror stories of benzo withdrawal, but always from stopping too quickly. I am glad the Tagamet still helps some. I have a son who has seizures so I know how horrible they are. So sorry for your troubles and best wishes for recovery.
 
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FHL, what does the doctor think caused your symptoms to begin with that caused him to put you on stimulants and depressants at the same time? I've just read this entire thread and I was quite hopeful for you to get back to work and all. I am an R.N. also, but disabled with ME.

Did you go off the Ativan abruptly to cause the withdrawal? I have heard horror stories of benzo withdrawal, but always from stopping too quickly. I am glad the Tagamet still helps some. I have a son who has seizures so I know how horrible they are. So sorry for your troubles and best wishes for recovery.
Sorry, I am just now seeing this. I was originally put on Wellbutrin and later Provigil for fatigue post-mono. I was later diagnosed with hypothyroidism, so a lot of my fatigue resolved once that was properly treated. I still relied on the stimulants because I worked night shift, and they helped me stay alert and awake at work. Unfortunately they also caused muscle spasms, jaw-clenching, and insomnia. I was originally prescribed Ativan after a breakup in 2004, I was crying and having chest pains due to the stress. I never used it at that time, I didn't like the way it made me feel. I started using it down the road in 2008-2009 to help with the muscle spasms, insomnia, etc caused by the stimulants. I never mentioned it to my doctor. It was an old prescription from 2004, and I didn't think it was important because I was rarely taking it. I didn't ask for a refill until 2010. By that time I was off Wellbutrin, occasionally using Provigil, but stopped because it gave me fevers and canker sores, which I know now was due to aggravating withdrawal symptoms. I was just using the Ativan occasionally to help me sleep before my night shift.

And yes, I quit cold turkey, I was trying to avoid dependency. I suspected some of my health problems were drug-related, but I didn't know my case would be that extreme. I didn't think I could possibly have a dependency because I wasn't taking it every day, and I was on such a low dose, but apparently any length of time over 2 weeks causes physical dependency. I crossed over to Valium on March 30th to help control the seizures, and also because it has a longer half-life to keep the withdrawal symptoms at bay (aka my "CFIDS" symptoms).

To update, I haven't had any seizures in 6 weeks, and I've had no visual disturbances for 6 days. So I am finally healing! :D I am down to 3.5mg Valium per day. I am feeling too weak to make another cut this week, but I will try again next week. I hope to be back to work before Spring, but I still have to get out of hospital nursing, and probably try office nursing. My stamina may never be the same, at least not for several years. So all in all, it's been rough, but I am expected to make a full (or near full) recovery.
 
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When I googled "cimetidin cfs" i was sent to this great thread which i reactivate now. My cfs specialist wanted me to take cimetidin so i started it 3 days ago and am still on a tiny dose. Neuro symptoms seem to get worse a little but i think i will give some more time. Is faith, who got better with it, still on the board?
 
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When I googled "cimetidin cfs" i was sent to this great thread which i reactivate now. My cfs specialist wanted me to take cimetidin so i started it 3 days ago and am still on a tiny dose. Neuro symptoms seem to get worse a little but i think i will give some more time. Is faith, who got better with it, still on the board?
Hello! I don't post here anymore since I don't have CFS, but I am notified when someone posts on this thread. I hope the cimetidine helps you. I still take it because it potentiates my Valium and keeps it in my system longer to prevent withdrawal symptoms (which I used to believe was CFS). I am down to 3mg per day, still haven't been able to return to work (been off since May 2011), and had surgery to remove some nerves in my head in November, also had some sinus surgery. Dealing with infections from that, on my way to have a CT scan now. I haven't been able to get below 3mg Valium per day without seizures, so I may just have to stay on this for life. It's far less dangerous than Ativan, so I think I'm okay with that. Hoping to return to work as soon as this infection clears up. Best wishes to all.
 
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So in your case it wasnt cfs but withdrawal symptoms? Never read about sth like this. Hope you'll be able to work again soon.
 
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So in your case it wasnt cfs but withdrawal symptoms? Never read about sth like this. Hope you'll be able to work again soon.
Right. In my case, this "syndrome" was CREATED by prescribing multiple different drugs for many years. If I had never been prescribed anything, I would be healthy today. I'll be healthy soon, getting better every day now that we know what is wrong.
 

heapsreal

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interesting thread to bring back, hope wishing you all the best, yes havent seen you in awhile. interesting about your withdrawal syndrome as i wonder how common this is as many are on sleep medication, although many who arent who still have sleep problems. Out of interest did you have any abnormal immune/infectious tests, did or so u have post exertional malaise etc. Wanting to know how u ruled out cfs/me or symptoms improved coming off valium??

Probenecide is another med that can increase blood levels of other meds like antivirals, antibiotics and benzo's and keep them active for longer in your system, but as always check with your doc as it may interact with other meds you are on??

cheers!!!
 
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Yes, I had abnormal immunologic testing, and I still have an overactive immune system. It's a Lupus-like syndrome, but whether it's related to withdrawal, or the drugs, or an actual autoimmune disease, I will never know. Considering I'm not able to get off the drugs without having seizures, I may never know what my immune system would do without them. My overactive immune system is the reason I'm having surgical complications. I'm having a "foreign body reaction" to my internal sutures in my head and inside my nose. I have to take Medrol to suppress my immune system, and I'm on my 8th pack of Zithromax. (My surgery was November 1st, I had endoscopic migraine surgery, plus a septoplasty with revision, plus sinus surgery. It was a 6 hour surgery.)

But yes, I feel much better now than I did before. I still can't exercise. If I do, I still have PEM, in which case I am prescribed another Medrol dosepak for the inflammatory reaction. I still get the same symptoms within three hours of exercise: canker sores, fever, night sweats, swollen lymph nodes, painful joints, etc. So I just don't exercise. I'm not sure when I'll get my strength back, if ever. One day at a time. As long as I don't do anything strenuous, I feel very healthy doing normal, daily activities. Light exercise doesn't bother me, I just can't swim or work out.
 

heapsreal

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Yes, I had abnormal immunologic testing, and I still have an overactive immune system. It's a Lupus-like syndrome, but whether it's related to withdrawal, or the drugs, or an actual autoimmune disease, I will never know. Considering I'm not able to get off the drugs without having seizures, I may never know what my immune system would do without them. My overactive immune system is the reason I'm having surgical complications. I'm having a "foreign body reaction" to my internal sutures in my head and inside my nose. I have to take Medrol to suppress my immune system, and I'm on my 8th pack of Zithromax. (My surgery was November 1st, I had endoscopic migraine surgery, plus a septoplasty with revision, plus sinus surgery. It was a 6 hour surgery.)

But yes, I feel much better now than I did before. I still can't exercise. If I do, I still have PEM, in which case I am prescribed another Medrol dosepak for the inflammatory reaction. I still get the same symptoms within three hours of exercise: canker sores, fever, night sweats, swollen lymph nodes, painful joints, etc. So I just don't exercise. I'm not sure when I'll get my strength back, if ever. One day at a time. As long as I don't do anything strenuous, I feel very healthy doing normal, daily activities. Light exercise doesn't bother me, I just can't swim or work out.
Thanks for sharing that, hope u continue to feel better although it still sounds like your battling on.

cheers!!!
 
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CFS Since,

I want to mention LDN again. Not because I think you should try LDN, but because the theoretical mode of action may shed some light on why Tagamet may work in lower doses.

Here's a quick summary.

1) endorphins play an important role in immune system.

2) naltrexone blocks endorphin receptors

3) while those receptors are blocked, naturally produced endorphins are able to 'build up'.

4) in higher doses, naltrexone continues to block those receptors and the natural endorphins are unable to 'do their job'. (leading to the opposite effect, and a worsening of symptoms)

5) with a lower dose, the naltrexone is cleared of the body long before the next dose, allowing endorphins to bind with receptors and exert their influence on the immune system.

If you take the basic ideas of this theory and apply them to Tagamet, you might see that a lower dose is worth a try.

I have used simple language here, I'm just trying to get the basic point across.
hi julius,
i read this post of yours about taking tagamet in lower doses, and i was wondering what range that lower dose might be. I'm recovering from shingles, and had read just about everywhere that i should take tagamet 3 tabs a day then 2 at bedtime, but i got horrible intestinal pains with something between constipation and diarrhea for hours, this was about a half hour after the bedtime dose. it was clear it was a recaction from too much tagamet. plus, exactly where i'd had the shingles flare up also felt like it was on fire. i wanted to ask you then, what would be considered 'a lower dose'. thanks
 
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I have a general question about how much tagamet it's advisable to take when recuperating from shingles. The suggestion of 3 tabs throughout the day, then 2 before bed turned out to be way too much as I got intense lower intestinal cramping with a consipation/diarrhea which lasted for hours through the night. I'm not sure if I should just limit it to one a day, or 2 or 3. Has anyone's dr. suggested to them a certain number per day, or does anyone have any experience or insight into the number of tabs one might safely take? I know the package insert says a max. of 2 tabs x day. Thanks.
 
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Regarding that last post I wrote on tagamet: I've got the 200 mg tabs. I've even seen posts from folks who suggest taking a half tab a day, so I see there are a lot of options. Also, I wanted to ask if there's a better time to take them re: food intake, etc.
 

merylg

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Yes, I had abnormal immunologic testing, and I still have an overactive immune system. It's a Lupus-like syndrome, but whether it's related to withdrawal, or the drugs, or an actual autoimmune disease, I will never know. Considering I'm not able to get off the drugs without having seizures, I may never know what my immune system would do without them. My overactive immune system is the reason I'm having surgical complications. I'm having a "foreign body reaction" to my internal sutures in my head and inside my nose. I have to take Medrol to suppress my immune system, and I'm on my 8th pack of Zithromax. (My surgery was November 1st, I had endoscopic migraine surgery, plus a septoplasty with revision, plus sinus surgery. It was a 6 hour surgery.)

But yes, I feel much better now than I did before. I still can't exercise. If I do, I still have PEM, in which case I am prescribed another Medrol dosepak for the inflammatory reaction. I still get the same symptoms within three hours of exercise: canker sores, fever, night sweats, swollen lymph nodes, painful joints, etc. So I just don't exercise. I'm not sure when I'll get my strength back, if ever. One day at a time. As long as I don't do anything strenuous, I feel very healthy doing normal, daily activities. Light exercise doesn't bother me, I just can't swim or work out.
Hi faith.hope.love,

Thanks for sharing your experiences here & hoping you feel a bit better now. I've had a couple of sinus surgeries. Once to remove a polyp & make a hole in the bone to so-call improve drainage. The other time to remove part of a tooth root that shot up into maxillary sinus during a difficult extraction. If left it would have caused a "foreign-body reaction". Needless to say I still have chronic sinus problems & recurrent nasal septal ulcers. They tried stitching a silicone dressing on either side of the nasal septum to encourage healing, but it wasn't a success & it came off early.

I also have a Lupus-like syndrome, but ANA & tests for Sjogren's etc all Neg.

Have you excluded Familial Mediterranean Fever? Genetic testing can help, but won't always find a mutation. Also worthwhile excluding Behcet's disease, Lyme etc and underlying connective tissue disorders like Marfan, Loeys-Dietz, Ehler's Danlos etc.
 
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Hi merylg! It's been a long time since I logged into this place, and what perfect timing. I'm having a relapse of some sort and nobody knows what's going on!! It started out with hives and itching around Thanksgiving, then a petechial rash. I tried to ignore it until the beginning of January when I figured I better get it checked out. All labs came back okay, just elevated ANA at 1:160, but it's been positive for years. I was given another Medrol pack and that cleared up the itching for the week that I was on it. The hives and itching returned the day I finished my last dose. I have a very faint petechial rash again. There is a random spot on my back that keeps bleeding. (???) I didn't scratch it, I have NO CLUE why it's bleeding or what it is. Now today it appears that I either have hives on the inside of my lips, or a sudden breakout of canker sores, or possibly cold sores?? (Cold sores are usually on the OUTSIDE of the lip, and I haven't had a cold sore in over a decade.) No clue, but it cleared up when I took Claritin, so it could have been hives inside my mouth. I can feel spots on my tongue starting to swell up too.

ANYWAY, I've made NO changes in my medication since I last wrote. I'm still on 3mg Valium per day to prevent seizures and nothing more. It merely stabilizes the electrical activity in my brain, that's it. I DID recently try to back off my migraine medicine, which is a barbiturate, so MAYBE this is a withdrawal syndrome, but I don't know. It's just not going away. It's been 2 months and I'm only getting worse. I now have all my CFIDS symptoms again. Very sore muscles, hypersensitive skin, horrible joint pain and stiffness, extreme fatigue, profound weakness. I incidentally ran out of Tagamet a while back and restarted it today. I'm hoping for some miraculous results like last time. I'll keep you posted.

PS: I've been worked up for every autoimmune disease under the sun. They said no organ involvement = no autoimmune disease! Very frustrating.
 
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Just to explain my situation in more detail (but you MUST read the links I posted in order to understand howTagamethelps CFIDS. I will post them again in case you missed my first post.

http://books.google.com/books?id=Vt...=Tagamet and Chronic Fatigue Syndrome&f=false

http://www.lef.org/magazine/mag2001/mar2001_report_tagamet_1.html

I've had CFIDS for well over a decade. My most recent relapse started in August. The following 4 months, I had fevers, night sweats, chills, sore throat, swollen glands, canker sores, tongue lesions, migraines, numbness and tingling of my arms and legs, body aches, swollen joints (knees), recurrentshingles, and extreme fatigue. I took a few courses of antibiotics, and improved each time, but the illness would return within DAYS of being off the antibiotics. I missed most of the last 4 months of work. I went to 5 different doctors, no one could find anything, yet they didn't look very hard either. Once you have the diagnosis of CFIDS/POTS, they don't look for any other causes. Finally an Immunologist checked my white blood cells more carefully, and found that my T-cells (CD3, CD4, CD8) were elevated, but that just indicates an overactive immune system and viral activity. No treatment was given. I saw my family doctor, and asked for another round of doxycyline, this time I took it twice a day for 2 weeks. The sore throat and knee swelling went away, but the fevers and night sweats persisted for a while, and I could feel theshinglesabout to flare up again. The doxy left me with terrible gastritis and reflux despite the fact that I've been on Nexium, so I recently started takingTagamet. All my remaining symptoms disappeared, and theshinglesnever came back.

That was an incidental finding. I chose Tagametbecause it also helps with the symptoms of PCOS (polycystic ovarian syndrome), which I also have. In my research of Tagametfor that reason, I came across this on Tagamet's Wiki page: http://en.wikipedia.org/wiki/Tagamet

"In some studies,cimetidinehas been found to reduce the debilitating pain and symptoms of herpes zoster, presumably by blocking the H2-receptors of T-lymphocyte suppressor cells."

That caught my attention because obviously I had herpes zoster, and an elevation of my T-cells. I googled some more... and found the above articles. It's an "old school" treatment for CFIDS. And it worked for me. I KNOW the doxycycline is what took away the sore throat and joint pain, but theTagametis what kept the viral illnesses at bay. I had been flaring non-stop for 4 months, and now I'm fine. I return to work tomorrow.
Just to explain my situation in more detail (but you MUST read the links I posted in order to understand howTagamethelps CFIDS. I will post them again in case you missed my first post.

http://books.google.com/books?id=Vt...=Tagamet and Chronic Fatigue Syndrome&f=false

http://www.lef.org/magazine/mag2001/mar2001_report_tagamet_1.html

I've had CFIDS for well over a decade. My most recent relapse started in August. The following 4 months, I had fevers, night sweats, chills, sore throat, swollen glands, canker sores, tongue lesions, migraines, numbness and tingling of my arms and legs, body aches, swollen joints (knees), recurrentshingles, and extreme fatigue. I took a few courses of antibiotics, and improved each time, but the illness would return within DAYS of being off the antibiotics. I missed most of the last 4 months of work. I went to 5 different doctors, no one could find anything, yet they didn't look very hard either. Once you have the diagnosis of CFIDS/POTS, they don't look for any other causes. Finally an Immunologist checked my white blood cells more carefully, and found that my T-cells (CD3, CD4, CD8) were elevated, but that just indicates an overactive immune system and viral activity. No treatment was given. I saw my family doctor, and asked for another round of doxycyline, this time I took it twice a day for 2 weeks. The sore throat and knee swelling went away, but the fevers and night sweats persisted for a while, and I could feel theshinglesabout to flare up again. The doxy left me with terrible gastritis and reflux despite the fact that I've been on Nexium, so I recently started takingTagamet. All my remaining symptoms disappeared, and theshinglesnever came back.

That was an incidental finding. I chose Tagametbecause it also helps with the symptoms of PCOS (polycystic ovarian syndrome), which I also have. In my research of Tagametfor that reason, I came across this on Tagamet's Wiki page: http://en.wikipedia.org/wiki/Tagamet

"In some studies,cimetidinehas been found to reduce the debilitating pain and symptoms of herpes zoster, presumably by blocking the H2-receptors of T-lymphocyte suppressor cells."

That caught my attention because obviously I had herpes zoster, and an elevation of my T-cells. I googled some more... and found the above articles. It's an "old school" treatment for CFIDS. And it worked for me. I KNOW the doxycycline is what took away the sore throat and joint pain, but theTagametis what kept the viral illnesses at bay. I had been flaring non-stop for 4 months, and now I'm fine. I return to work tomorrow.
hi faith hope,
i posted a general question the other day about how what could be an advisable dosage of tagametto take... but as it's pretty urgent for me and i haven't seen any responses of yet, i thought you might be the right person to ask. it's been about two weeks now since i had a flare up of shingles, the blisters are gone, scabs and pain remain, though they are are diminishing... it's located in the ear, herpes zoster oticus, and so any post herpatic neuralgia is so much more dangerous as it goes to the optic nerve, brain, etc, etc. in trying to limit the length of time of this lingering & scary nerve pain, i'm trying to take cimetidine/tagametbut i really need some advice from anyone out there on what dose other ppl have taken, to try and at least get an idea of what might work for me. the suggestion around the internet of 3 tabs throughout the day, then 2 before bed i think was too much as I got really bad intestinal cramping with a combined consipation/diarrhea which lasted all through the night. In the days before that, i'd forgotten the bedtime dose and so I'd taken up to 3 successfully with the one side effect of being really, really tired for the next (two?) hours after taking it. I'm not sure if I should just limit it to one a day, or 2 or 3. Has anyone's dr. suggested to them a certain number per day, or does anyone have any experience or insight into the number of mgs necessary to avoid a both a reoccurence of shinglesand post herpatic neuralgia? I know the package insert says a max. of 2 tabs x day, and I've even seen posts from folks who suggest taking two tabs or even a half tab a day, so I see there are a lot of options, and I don't know what dosis it becomes really beneficial to the immune system. Also is there a better time to take them re: food intake, and can they cause insomnia? I've read so much on this subject over the past week that i feel more confused than before and could really use some feedback i think. I live outside the States, so I had to get them rush mailed here, and none of the drs have any info at all on this subject. i've also been diagnosed with myofascial pain syndrome at one point, then fibromyalgia at another, but the dr's here won't touch that issue b/c of what it's cost would be to the public health care system if it were to be truly addressed and treated, so they ignore it. apart from that i've seen that tagametcan be used for adult acne and mild alopecia which i've also been dealing with. but i digress; mostly, at least right now, i'm trying to get some advice about how much tagametto take and i'm being met with a deafening silence everywhere. any advice would be so helpful, thanks:)
 
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ps: i've had to go back to work a week earlier than i should and it's been reallt stressful. i feel as though i have the flu, but it's not exactly that. cold, achy, sore throat...