Tagamet (cimetidine) for CFIDS (worked for me)

[Lily]

Certainly have my fingers crossed for you too, Jackie! You deserve a break!

I've said this before on here, but will repeat anyway. My Vit D was checked for the first time last September, and my level was 7 (using the same normals as you quoted 32-100). My doc put me on D3 5000 IU every other day, so pretty close to what you are getting. Within 7 weeks (Nov) I was up to 23. She wanted me to continue on the same dose and recheck in 6 months (which seemed kinda long, so I may check with her on that).

Anyway, I went off all Ibuprofen at the same time because of abnormal creatinine and electrolytes. Only pointing that out because that's the only other change made at the same time I started D3. Whether due to the Vit D, I don't know, but the OI is better (not gone) and my crashes aren't quite as bad either. Kinda hard to explain. I don't have that internal vibrating feeling for one thing and haven't had that "gee, I have to be dying, feeling". So could that be due to Vit D? I dunno, but I'll take any little improvement anytime.:Retro smile:

One good thing is the D3 didn't seem to bother me at all. I'm so sensitive to stuff now, I was leary of trying it.

I haven't been able to stay up really any longer than I did previously, but it's not the same awful feeling as with the bad OI. Maybe a lot of deconditioning. Also, I really miss the Ibuprofen because taking that regularly kept a lot of the joint pain and periodic costochondritis at bay - so those things cause problems when trying to move around. Other pain meds just don't work that well for chronic inflammation.

I'm really hopeful that Tagament and D3 have some postitive impact for you!! Will keep everything crossed!

 

[faith.hope.love]

Another progress update for me: Been back on the Tagamet for about 10-11 days now, and I feel SO MUCH better. Energy levels have definitely improved. Even my POTS symptoms have improved. I am feeling really good today. I'm feeling about an 80 on Dr. Bell's Disability Scale. I was about a 50 during the week that I went off it. (I was about a 30 between August and December with the recurrent shingles and active CFIDS flare.)

Here's a link to that scale in case you aren't familiar with it: http://www.cfids.org/community/pcpep/disability.pdf

 

[jackie]

Thanks for the update F.H.L.! So good to hear how well you're doing!

I'm hanging on everyone's words re this..it's all giving me hope to carry on a bit longer.

I did run into a small roadblock...I have a dental appointment tomorrow and have to take my usual prophylactic dose of Amoxicillin (MVP)...and decided to wait to start both Tagamet and Vit.d3 until after the appt, as I'm not sure if this might make the antibiotic stronger/weaker?

I also am concerned about the interaction of Tagamet (prescription is for 800mg. daily to start with) and Acyclovir...since Tagamet enhances the effect of this (the Acyclovir) and I'm already on such an awfully high dose (3200mgs. daily)...so I left a message with my Doc REMINDING him of these large dosages and asking if I should start "slower".

I put the drug interaction site that you gave the link for on my desktop...very helpful, thanks! So far I've checked my Acyclovir, Azor, Atenolol (OI) and my pain meds and think I've figured out a schedule for taking everything at different times of the day! Yikes!

BTW Lily...I'm pretty sensitive to "stuff" also..and I'm glad to hear that you haven't had any adverse reactions to the D3 (bet I won't either!)

I've caught myself daydreaming about all the things I'm going to do...when I begin to feel better! Pretty silly (and simple everyday stuff we often take for granted until we can no longer do them)....things like going to the hairdresser or going to the Farmer's Market or the library - or even walking the Poms! (I could walk the Poms if I was an 80!...see pix of Poms!)

I'VE NEVER had the chance to walk them!...my husband gets that "pleasure" and tells me they are "Chick-Magnets"!lol! (and I bet he's right 'cause they can be pretty darned cute!)

Should be just in time for Spring! Sigh! Won't we look...?

take care, guys! jackie:victory:

 

[faith.hope.love]

Awww, your Poms are adorable. I have 3 dogs myself. Two pit bulls, and one french bulldog. Luckily the pitties get their exercise in my fenced-in yard, and the frenchie doesn't require much exercise. She just lies around in front of the heater.

I have such high hopes for you. I hope you can do everything on your daydream list!

About your acyclovir, you might be able to reduce it. I went from 2000mg (valacyclovir) to 500mg per day. I take an extra one whenever I've exerted myself though. I take nadolol 10mg for POTS, and I didn't even think about that interaction. My cardiologist wanted to switch me to Toprol XL, but it interacted with too many of my other medications, so I told him I would just stick with the nadolol. He wanted to increase the dose to 20mg, but I don't think he realizes the Tagamet will increase the concentration. I hate to go against his advice, but I know what works for me, and I'm just going to leave it alone!

 

[jackie]

F.H.L. Hurry and add some pics of your guys so we can see! I love both your breeds - smart girl, your frenchie! I just lay around in front of the heater nowadays, too. One of my friends has THREE French Bull dogs...what a delightful breed! And my daughter and her family (they happen to live across the street!) have always had both Pits and Rotts as the kids were growing up...and my Grandaughter and her new husband just "got" their new puppy a few months ago so I had to post a pic of my grand-dog-baby. Isn't that a face you've just GOT to kiss?! (Although she's grown so much she could easily eat my pups for breakfast now!) Oops...getting off-topic - but I can't help myself!

(thanks for your good wishes..I hope I can achieve a few things on my wish-list, too!)

Dr. Chia said that after a few months on Tagamet (if my shingles cleared up) I could reduce the Acyclovir by one dose (400mg) per day. I wonder if he might decide to start me out on a slightly lower Tagamet dosage? Although...he never seems to be too concerned about high doses of ANYTHING...so maybe it will be ok.

I read (and RE-read) those studies you linked at the start of the thread...and then went on to find quite a few others. (the work with the Seattle HIV patients was really interesting)
jackie

 

[jackie]

Shhhh! Going to sneak in one more off-topic comment...gorgeous dogs! Those eyes on your Heaven are mesmerizing! And the blue Koa is a handsome boy.....And what about that face of your Frenchie - she looks about as comfortable as you can get!( I have to show that pic to my Fr. Bulldog friend.) Your little guy (what I can see of him) looks pretty sweet too!

jackie

 

[faith.hope.love]

Oh you're too quick! I was just going to tell you to check your PM, I deleted my post. I didn't wanna hijack the thread with my dogs 'cause I could go on for days! lol

 

[talkingfox]

quick update. I've reached the end of the one month trial the doctor laid out. I'm now on day 2 w/out and I can already tell a difference in how I feel...definitely worse.

In a months time the Tagamet made a difference but seemed to stall out in getting rid of all the viral symptoms. Either I need to be on it longer or I may want to think about adding another anti-viral to the mix.

But that being said, I'll take better I can't wait for this week to be over so I can start the Tagamet again.

 

[faith.hope.love]

Glad you're feeling "better" but wish you could feel your best! May I ask which viruses you've had that still flare up? Maybe adding valacyclovir or famvir would help.

I'm still doing very well. I feel about 90% recovered. Staying on my feet is still a little difficult, I get tired quickly, but no viral symptoms. I'm definitely trying to return to work asap.

 

[talkingfox]

I wish I knew for certain which ones were being resistant, faith. So far no one has bothered to take blood tests and I can only guess based on symptoms. My best guess would be either EBV or CMV .
My energy levels didn't improve at all either but the lessening of pain levels was a very very nice thing

 

[maryb]

4)

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.

I've been following this thread with interest and decided to give the Cimetidine a go. I am going with Julius's idea of low dose so have started with 100mg (1/2 200mg generic) I will post in a week or so to let you know how things are. I had a viral screen 2 years ago, it showed mega high antibodies to CMV indicating a recent infection, November 2009 had another screen and found to have active EBV, am considering taking Valtrex as well but will give the Cimetidine a trial on its own first.
Glad to hear you feel its working for you talkingfox and thanks to fhl for the info.

 

[jackie]

Hi Guys!:Retro smile: Thought I'd take a peek and see how you're all doing! I'm still waiting until I recover sufficiently from oral surgery to begin my Tagamet. It's only been four days...Just not healing well (all the tiny spots/needle track marks in my mouth where injections were given are a bit infected and inflamed, have developed new mouth sores...I'm full of stitches on both sides and the area that was removed for a biopsy is very swollen too - I'm a mess!)

But not healing well...is to be expected! If I get a tiny paper cut or a hang-nail it's infected within a few hours (even aggressively treating it with Bacitracin). The last time I had a blood draw..within about 6 hours the puncture mark was infected and took over a week to heal! So healing is a slow process for me.

I'm a bit torn as to choosing a starting dose. My doctor said 800mg tagamet/3200mg. Acyclovir...a combination which seems SO high...but I figure he knows me and my system by now, so maybe it'll be ok?

Might try 400mg for a few weeks and see how I feel. Unfortunately lowering acyclovir is not an option yet (when I asked if I could start to titrate down right now - a look of horror crossed his face!lol! so I promised not to)

Fox...what's your dosage (can't remember!)....if you've begun to flare a bit virally, could you up your dose? Re: duration - my doc said to plan for a six month or so trial...maybe even longer! Still...I'm so happy to hear of any improvement for you! I know what you mean about being impatient to re-start...the very few times over the years when I needed to suspend Acyclovir for just a day or two...I got anxious and could hardly wait to pick up where I left off! Also, great that you have a decrease in pain...that would certainly help me too (it's one of my bigger complaints)

Faith...how wonderful for you! Still at 90%...does that mean NO shingles? Even without a return of major energy/stamina...it's not so bad just resting if you're not having to deal with the pain/malaise and all-over "sick" feeling you get with those! BTW..thanks for the PM pix!

take care, all...jackie (waiting impatiently:Retro wink

 

[faith.hope.love]

No shingles! Every now and then, I'll get a faint itchiness on my back with some numbness/tingling down my legs, and I just take the Tagamet and an extra valacyclovir, and it stops. I've had no other viral symptoms. I LOVE not having canker sores and tongue lesions so I can actually eat without pain! Speaking of which, very sorry to hear about your oral surgery! I hope you heal up quickly.

 

[andreamarie]

I read the thread but have to read it again when I'm not having a "tired day." Wanted to say that I have intractable GERD. Nothing really controls thel inflammation and I form a ring in my esophagus that has to be dilated about every four months. I took Tagamet and Prilosec for yrs and had to stop the Tagamet because after about four yrs I got diarrhea, cramping, etc. I did not notice my CFS improving. I was surprised that a gastro did NOT want you taking an H2 and a PPI. Mine put me on both. My gastro is top notch; I have Crohn's and know most of the gastros here because before CFS I edited part of a G.I. text.

 

[faith.hope.love]

I read the thread but have to read it again when I'm not having a "tired day." Wanted to say that I have intractable GERD. Nothing really controls thel inflammation and I form a ring in my esophagus that has to be dilated about every four months. I took Tagamet and Prilosec for yrs and had to stop the Tagamet because after about four yrs I got diarrhea, cramping, etc. I did not notice my CFS improving. I was surprised that a gastro did NOT want you taking an H2 and a PPI. Mine put me on both. My gastro is top notch; I have Crohn's and know most of the gastros here because before CFS I edited part of a G.I. text.

I think because I was taking Nexium twice a day. That bothered him the most. I only take it once a day now (in the morning), and I've been taking the tagamet once a day (at night) as well.

 

[talkingfox]

I've been doing a little more poking around in the Citmetidine/immune system thing and found a few studies that point to the stuff actually increasing NK cell levels and function.
Most of these were done on immune compromised cancer patients. Needless to say I found this a bit exciting.

Study from the Chinese Anti-Cancer Assc.

Cimetidine modulates natural killer cell function of patients with chronic lymphocytic leukemia.

Perioperative cimetidine application modulates natural killer cells in patients with colorectal cancer: a randomized clinical study.

CIMETIDINE PRESERVES NON-SPECIFIC IMMUNE FUNCTION This one seems to point at B- cell enhancements as well.

Jackie: I'm going back on. I'm not waiting. I'm also upping my dosages to the 800mg that's considered a standard in ALL the studies I've read and considered within safe guidelines by the manufacturers. Could be I was just a bit shy of full on therapeutic dosage for me :Retro smile:

 

[cfs since 1998]

I've been doing a little more poking around in the Citmetidine/immune system thing and found a few studies that point to the stuff actually increasing NK cell levels and function.
Most of these were done on immune compromised cancer patients. Needless to say I found this a bit exciting.

Those are some great finds talkingfox.

Cimetidine modulates natural killer cell function of patients with chronic lymphocytic leukemia.

This one had a 12-fold increase in NK-killing ability, which is pretty impressive. Although it was absolutely abysmal to begin with and didn't reach the activity seen in healthy people, that is still a big increase. I'm taking other things for NK function right now but I have been thinking of retrying cimetidine in a month or two.

 

[froufox]

Hi talkingfox,

Thanks a lot for posting links to those studies, very interesting!! & I agree CFS1988 quite impressive results! In Betrayal by the Brain Jay Goldstein speculated that the reason Tagamet helped some people with ME/CFS was due it blocking the suppressor induced inhibition of NK cells and cited this particular study about histamine-induced soluble suppressor factor (HISSF) and NK cells..

http://www.jimmunol.org/cgi/content...c=relevance&firstpage=2456&resourcetype=HWCIT

So it does seem to explain how it might be helping us although Goldstein himself ended up concluding that he wasnt certain how it worked in CFS.

The dosage that was used in the first 2 studies that you linked to is 1.2 gms a day which is quite a bit higher than Ive read elsewhere. I was on 200mg for a little while but thought it was affecting my gut negatively (although in another way it also seemed to help my gut too) so I decided to decrease the dose and am just on 100mg at the moment. 200mg did really help at first but then the effects tailed off after a few days but having read those abstracts I am going to experiment with a higher dose too now and see if I can get a repeat of those initial beneficial effects.

Thanx again for posting and hope you also get some good effects from the higher dose!

 

[talkingfox]

I was worried for a bit about my digestive function as well Frou. So I rigged my timing so that I never take the stuff within 3 hours of eating and take a large dose (400 mg) at night right before bed. I also take my PBs then, which I thought would likely benefit from a reduced acid state. Seems to work a charm and the neuro pain that was creeping back is already lessening.

 

[starryeyes]

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.