EBV Reactivation /Zantac / Tagament to boost Immunity - help

[natasa778]

aha!
http://forums.phoenixrising.me/index.php?threads/new-treatment-for-schizophrenia.24026/

 

[trails]

Thank you, natasa, that's very interesting! I think its also interesting that I have always had a paradoxical reaction to antihistamines my entire life: extreme jitteriness, a complete crawling out my skin experience, etc. VERY UNPLEASANT. Kind of weird since I really don't have any other allergies of any sort.

 

[SunMoonsStars]

"aha!
http://forums.phoenixrising.me/index.php?threads/new-treatment-for-schizophrenia.24026/ "


Thank you natasa
Great info.

 

[zzz]

Is tiredness - sleepiness ( not fatigue ). Normal with this treatment and does it last or disappear ?

The prescribing information for Zantac lists somnolence as a rare side effect.

Is this treatment something others use ongoing and how do you use it ? Is there a pulsing schedule ?

Various people have used Zantac with differing results; some people find Tagamet more effective, though as you noted, it has more side effects. Dr. Goldstein, who discovered and pioneered the use of H2 blockers against herpes viruses, used these drugs two ways. For mononucleosis, he used them until symptoms disappeared, which was typically a day or two. For CFS, where these drugs sometimes worked even in the absence of explicit herpes virus symptoms, he had his patients use these drugs as long as they were effective. He had his patients use a steady dose of these drugs; at no point does he mention pulsing them.

This describes my feeling. Not the rash but a little wired but tired! I took a long nap even yesterday and I never nap. Its not wired like awake wired. A little jittery. Going down to half my dose has helped a lot already.

Agitation is another rare side effect listed in the prescribing information for Zantac.

@SunMoonsStars - what an interesting experience! Several years ago my doctor advised me to try Tagamet to boost my very weak immune system. I tried it but it caused a very dark mood for me, it made me depressed and I couldn't handle it so had to stop. Now I'm wondering whether Zantac would work similarly without causing a dark mood? Definitely worth a try.

Zantac is much less likely to cause mood problems, both due to its lower incidence of side effects in general, and also due to the fact that unlike Tagamet, Zantac does not generally cross the blood brain barrier. However, many of us have leaky blood brain barriers, and that could account for the somnolence and wired feelings reported by @SunMoonsStars.

Dr. Goldstein also notes, "Some patients are unable to take any dose of ranitidine [Zantac] because it makes them 'hyper'". (Betrayal by the Brain, page 154.) He then elucidates a number of mechanisms that could cause this reaction.

I took 150 2x a day for three days
I am now doing 75 2x a day and going to go to 1 x day In not sure if I should stop or keep going since It could help me otherwise and the EBV episode was quite severe and even though symptoms are gone in sure its still there and needs more time to be put into remission.

Dr. Goldstein, who was by far the expert in using these medications for the treatment of herpes viruses and CFS, would simply use them as long as they were necessary to suppress symptoms. Once the symptoms disappeared, he would stop treatment. However, if symptoms reappeared, he would resume treatment as necessary; sometimes indefinite treatment was required. This was especially true in the case of his CFS patients.

Maybe its all about finding the right dosage for us each as the immune system down regulation probably is all to a different extent anyway. And also during viral outbreak the virus can trick the immune system to down regulate further to hide from it. So would need more during episodes vs ongoing. Could be.

This essentially what Dr. Goldstein did. It is not possible to eliminate herpes viruses from the body, but in the case of mononucleosis, he found that a few days treatment with these drugs was enough to drive the EBV into remission in the 90% of the cases where this treatment worked. This was in people who had mono but not CFS, so for those cases where an active EBV infection is comorbid with ME/CFS, it's possible that a low dose of Zantac may be required to keep the virus suppressed.

I have never heard of using H2 blockers for herpes viruses.

This is not surprising, for although Dr. Goldstein discovered this application of H2 blockers in 1979 and published his findings in 1983 (Goldstein, JA. Cimetidine and mononucleosis. Ann Int Med 99(3): 410-411), like virtually all of his discoveries, this one was ignored by the medical community at large. As Dr. Goldstein notes on page 313 of his book Tuning the Brain:

As a probably predictable aside, I should mention no one evinced the slightest curiosity about how these results [the rapid termination of LSD effects using niacin] were accomplished, and this "antidote" remains little known thirty years later, much like my discovery in 1979 that cimetidine made acute infectious mononucleosis in teenagers or adults (and varicella, too) resolve in one or two days. I am getting tired of whining about it, but hardly anyone is aware of this treatment, even now [in 2003, 24 years after its discovery]. Although I reported a 90 percent cure rate in over 100 patients (rather high for a placebo response), the results were "anecdotal". Naturally, I was unable to get a grant to perform a double-blind, placebo-controlled experiment. "But Tagamet (and later Zantac) is for ulcers," the reviewers would write. The fact that the chairman of the department of infectious diseases at the local medical school was my coinvestigator on the grant proposal did not grease the wheel at all.

@Jonathan Edwards, I would highly recommend Dr. Goldstein's books to you; I think you would find them fascinating. Specifically, his last three books (Chronic Fatigue Syndromes: The Limbic Hypothesis (1993), Betrayal by the Brain (1996), and Tuning the Brain (2003)) form what Dr. Goldstein considers a trilogy, and contain a treasure trove of clinical findings about and treatments for CFS that Dr. Goldstein used successfully on over 20,000 patients, and that are mostly found nowhere else. Yet researchers occasionally duplicate his work, not realizing that what they have done is not original. For example, Drs. Fluge and Mella filed a patent application in 2013 for a treatment for ME/CFS that utilizes nitroglycerin, not realizing that Dr. Goldstein had published the exact same treatment in his 1996 book Betrayal by the Brain, and had used it extensively. (This is detailed in thread Patent filing for the use of nitric oxide with or without B-cell depletion in CFS.) Even more common are the treatments that Dr. Goldstein successfully pioneered in the 1990s that have yet to be adopted. Just earlier today, the following comment was posted in the article The Ketamine Question in Fibromyalgia and Chronic Fatigue Syndrome on the Health Rising Web site:

Dr. Goldstein gave me a ketamine infusion in 1997, after all other methods had failed to alleviate my CFS symptoms. I experienced complete remission of my symptoms for a week. Then, they slowly crept back. I tried to duplicate the effect with at home IM treatments, which helped, but never duplicated the dramatic full remission.
I wish I could find someone to try the IV infusion on me again. I use the drug on others all the time, as an anesthesiologist...

The week-long remission was typical; Dr. Goldstein would use this medication on a weekly basis, as it was a symptomatic treatment and not a cure. But as the author recounted, it completely relieved all of his symptoms for a week, and his experience with this treatment was quite common.

Dr. Goldstein is no longer practicing, and is in fact quite ill. I think that it would be a great tragedy for the entire ME/CFS community if his discoveries passed with him.

 

[Jonathan Edwards]

Dr. Goldstein is no longer practicing, and is in fact quite ill. I think that it would be a great tragedy for the entire ME/CFS community if his discoveries passed with him.

Dr Goldstein may well have had some good ideas but I am afraid I simply do not buy this business about 'could not get a grant'. Both myself and Fluge and Mella have been there and done it without a grant. In 1979 without all today's bureaucracy it would have been simple. There would be no extra cost for, for instance, treating two groups with two very different doses of H2 blocker packaged up in bottles coded blind by a colleague or friend. If you really believe a treatment works you can do a trial with no extra money in most cases - at least to get to the point where the preliminary evidence is strong enough to get a phase 3 study set up. It could be done tomorrow by any physician who is interested. But unless these blinded trials are actually done we have nothing tangible to work with. Patients need to beat their physicians over the head with calls for doing proper trials - for the sake of all the other patients. There are no excuses.

 

[SunMoonsStars]

This essentially what Dr. Goldstein did. It is not possible to eliminate herpes viruses from the body, but in the case of mononucleosis, he found that a few days treatment with these drugs was enough to drive the EBV into remission in the 90% of the cases where this treatment worked. This was in people who had mono but not CFS, so for those cases where an active EBV infection is comorbid with ME/CFS, it's possible that a low dose of Zantac may be required to keep the virus suppressed.

Thank you zzz for all the great info and responses !!!! Wow

I will say I have experienced such a dramatic and near immediate affect of zeroing out symptoms it is astonishing.
I agree with your above statement and I am trying to see what I will need and how long for this acute episode. This reactivation has only happened one other time and is not usual for my ongoing CFIDS symptoms. My hope is to get it suppressed far enough for me to take over again as I have in the past. At least to not be in severe acute distress.

So after 5 days I went to half a dose to see how I did. On that day I started feeling some symptoms trying to break through. Mildly but trying. So this tells me I need longer and maybe even higher dose for another five days before I try to reduce again. I do not mind being on reduced dose longer term until this is under control. For now hoping at higher dose I can get it suppressed in less than a month. It has been such a strong surge and I am a cfids patient and not a healthy one so I am not surprised 5 days is not enough.
Even though the symptom were relieved within the first day this does not mean the virus is under control well enough to stop therapy.

So I will be repeating the pattern of five days on and test myself by going down on dose to see if symptoms are there.

Maybe I will try tagament for one of the five day sessions.
I don't feel hyper or agitated. Hard to describe. Just not clear as if a bit of drugged feeling. Tired and foggy and a little shaky only When on higher dose. On half dose it immediately got better. So I hope to be on lower dose as soon as I can.

I thinkI will be reading his books for sure and I appreciate all the info you provided. I agree his work should stay alive and be recognized.

I'm new on this forum but it seems to me there is some obvious polarity. I've seen this though on various forums. I tend to have a open mind and I am an engineer who likes to know how things work and like to problem solve and research.

I wish more doctors were like Dr. G.
I admire those who try to find answers and solutions to problems and not just treat symptoms only.

I went to many doctors for this acute reactivation and nothing has come of it besides treat the pain and wait.
I was given though a trial of valtrex. Which works on my herpes simplex I get once a year maybe. But didn't dent this Epstein Barr episode. I am having the more rare serious symptoms seen in immune compromised patients and I had extra tough winter with pneumonia that knocked me down further so I know I need extra time anyway to recoup and regain my baseline.

Thank goodness for this treatment. I was suffering so badly. This therapy at right dose for now gets rid of all the symptoms and pain and now I just need to make sure to give the virus time to reduce enough to stay suppressed.
These symptoms during this reactivation are not what I deal with ongoing. EBV fatigue is really more tired and doesn't even match my normal fatigue. None of rest of symptoms do I experience ongoing.

Looking forward for first time in months to get this under control and move on from it.

Thank you again zzz

 

[SunMoonsStars]

Does anyone have any further side affect comments/comparisons/information on tagament vs zantac ?

Maybe someone who had done both. ?

I've read the info and links provided and seems tagament had more and more drug interactions.

I'm not worried about interactions as I am barely on any medications at this time.

But any other info on what to watch for on tagament appreciated.

I may try five days at the 200 mg 3x a day per Dr. Goldstein.

I have seen other dose regimens posted but this seems like a good start point.
Maybe just twice a day to see how I respond first day.

This therapy has immediate response it seems. Within half a day I can determine what's going on and can filter accordingly.

 

[adreno]

Hm. Weird. In this study, ranitidine actually decreased survival rates in mice infected with herpes:

Abstract

Depletion of natural killer (NK) cells in vivo with anti-NK1.1 monoclonal antibody or anti-asialo-GM1 antiserum drastically reduced survival time in Swiss albino mice infected intravenously (i.v.) with herpes simplex virus type 2 (HSV-2). In contrast, depletion of NK cells did not affect the survival time of mice inoculated with HSV-2 by the intraperitoneal route. A single dose of histamine prolonged survival time in animals inoculated with HSV-2 i.v. but not in animals infected intraperitoneally. Treatment with the histamine H2 receptor antagonist ranitidine alone reduced survival time in i.v.-infected animals and blocked the protective effect of histamine. Histamine or ranitidine did not affect survival time in anti-NK1.1- or anti-asialo-GM1-treated animals. Our data suggest a role for histaminergic mechanisms in NK cell-mediated protection against HSV-2.

http://www.ncbi.nlm.nih.gov/pubmed/7664171

But this study found positive effects of cimetidine:

Abstract

As there is evidence of a possible immunoregulatory role for H2-histamine receptor antagonists, we carried out a prospective randomized trial to evaluate the in vivo and in vitro effect of cimetidine, an H2-blocker, in the treatment of herpes zoster infection. Cimetidine treatment shortened the median interval until the first decrease in pain, the median interval until the complete resolution of pain and promoted faster complete healing of skin lesions than symptomatic treatment. The immunological trends observed in vitro support an important role for histamine in the induction of immunosuppression, as measured by the response to the mitogen phytohemagglutinin. This effect of histamine was antagonized by cimetidine.

http://www.ncbi.nlm.nih.gov/pubmed/2521868

In the first study they state that histamine increases immune response (natural killer cells), in the second they state it causes immune suppression.

 

[Mary]

Zantac is much less likely to cause mood problems, both due to its lower incidence of side effects in general, and also due to the fact that unlike Tagamet, Zantac does not generally cross the blood brain barrier. However, many of us have leaky blood brain barriers, and that could account for the somnolence and wired feelings reported by @SunMoonsStars.

@zzz - thanks so much for this information!

 

[SunMoonsStars]

"Cimetidine is the generic equivalent of the popular OTC drug better known by the brand name Tagamet. It is used primarily to relieve symptoms of esophageal reflux such as heartburn. Tagamet functions as a histamine (H2) receptor antagonist. 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"

See more at: http://www.lifeextensionvitamins.com/tatotrheands.html#sthash.tzV3Wxgr.dpuf

http://www.lifeextensionvitamins.com/tatotrheands.html

 

[SunMoonsStars]

http://www.lef.org/Magazine/2001/3/report_tagamet/Page-01

https://books.google.com/books?id=VtHlTVfToiQC&pg=PA196&lpg=PA196&dq=Tagamet and Chronic Fatigue Syndrome&source=bl&ots=G9BEFYa_7z&sig=OUvOZ-6ZCJS3-ZkcTAt7YZwPH7c&hl=en&ei=k59AS7HjE86PlAfY46WnDg&sa=X&oi=book_result&ct=result#v=onepage&q=Tagamet and Chronic Fatigue Syndrome&f=false

http://www.lifeextensionvitamins.com/tatotrheands.html

http://en.wikipedia.org/wiki/Cimetidine

http://www.ncbi.nlm.nih.gov/pubmed/?term=Goldstein JA[Author]&cauthor=true&cauthor_uid=3013060

http://en.wikipedia.org/wiki/Jay_Goldstein

 

[Sidereal]

Randomised double-blind trials or not, I can only speak from personal experience but I have a very serious on and off problem with herpes zoster (shingles) reactivation in the skin around the eyes and in the eyes themselves. It's not as easy to dismiss as other herpes virus reactivations like EBV and HHV-6 in ME/CFS patients (which doctors claim don't exist because unlike VZV they produce invisible symptoms and hey, high titres are a sign of good immunity against viruses! yeah... in normal people). The first time I took cimetidine (Tagamet) on the basis of Goldstein / @zzz information, the problem began to clear up within 20 minutes. It worked as well as 2,000 mg of Valtrex which gives me vertigo.

The problem with H2 antagonists is that they are fatiguing for me (and some others, it seems) and they worsen mast cell activation / allergy issues in ME/CFS if taken without a H1 antagonist. For me even taking a H1 antagonist is not enough to counter the negative effects of H2 antagonists. For this reason I only use cimetidine when the eye thing gets really bad.

Ranitidine (Zantac) doesn't do anything for me for some reason, just makes me really tired.

Goldstein's work needs to be taken very seriously and should be the starting point of any further ramblings on the subject of ME/CFS, in my opinion.

 

[SunMoonsStars]

It sure does work fast.

Regarding cimetidine
What dosing have you all tried ?

I have read 200 3x a day and 400 at bedtime. That seems like a lot !

I assume Ranitidine just needs lower doses for same affects in prescribing terms anyway.

If sleepiness is big issue I wonder if you can just do a big nighttime dose and get away with none in day ? Maybe.

 

[Sidereal]

200 mg works just fine. I'd be worried about ending up with no stomach acid if you take really high doses.

 

[SunMoonsStars]

I got a script today for Cimetidine and was discussed at 200 mg 3x a day and if acid is issue I will do 300 am and 300 pm

For Zantac 2x a day was a good enough frequency at 150mg.

I really rather do one dose at bedtime and not worry about acid or sleepiness side affects.
Maybe when I get to maintaining dose I can get away with 1x a day in pm dose.

 

[SunMoonsStars]

Since switching to Tagament / Cimetidine I don't have the weird feeling side affects like Zantac and much less sleepy tired feeling too. So far.
Luckily I'm off pain medications now and am off antibiotics and other meds so I don't have interaction concerns.

Anything else I should watch out for with this med ? If anyone has any other experiences or knowledge of side affects or contradictions I would appreciate it.

 

[SunMoonsStars]

Another study and explanation
http://www.researchgate.net/publica..._ranitidine_increase_interleukin-2_production

 

[natasa778]

I probably posted this earlier but here it is again, most interesting

... The suppression of human immunodeficiency virus (HIV) replication by histamine type 2 (H2) receptor antagonists, cimetidine, ranitidine, and famotidine was examined in vitro. The 50% reduction (IC50) in p24 antigen expression caused by the anti-ulcer agent, cimetidine, was observed at 26.8 nM with IC100 at 10 microM. Unlike azidothymidine-a reverse transcriptase inhibitor-cimetidine blocked HIV infection without affecting cell growth, as no cytotoxicity was observed even at the highest 1 mM dose. Ranitidine and famotidine were less potent than cimetidine. H1 antagonists, cyproheptadine and diphenhydramine, had no effect on HIV replication. Although the activity of cimetidine was observed at concentrations attainable by oral administration, the mechanism of anti-HIV action is unknown. This is the first report on antiretroviral action of H2 blockers.

http://www.pubfacts.com/detail/8950...human-immunodeficiency-virus-HIV-replication-

There have been small human trials but with mixed results.

 

[SunMoonsStars]

I only am on two weeks now of H2 Blockers to help this acute episode of what Im told so far is EBV. I have not done a full viral panel to see if it is any other Herpes or Viral thing but the EBV is positive for Reactivation. This would be only second time in 15 years to have a reactivation but these symptoms I have not seem to be different somewhat.

Anyway. I started on ranitidine and had a 90 percent decrease in symptoms near immediately. But I was so tired and had the histamine side affects that were pretty strong. I decided to try Cimetidine and I have been on that for the second week. I have no side affects like the ranitidine. I do not know why. But it is also helping 90 percent with symptoms.

My issue is that every few days I can feel a surge of the virus and symptoms trying to come forward. It is a subdued feeling of surge but its there and before the H2 blockers I had the same surges but so strong I was about to go to the ER every other day. First nausea and then within an hour a bad headache and then within another hour or two nerve pain and movement feelings in certain areas like trembling. Not tingling and not like a normal herpes feeling of nerve pain. The movements are like rumbling under the skin and some twitching. No tingling pain.

I have had normal herpes on my thigh since I was 20 and I know the normal Herpes symptoms and they are pretty infrequent like once a year and mild. Just a few days of a nerve pain on one side and pretty local and then small outbreak on my thigh and then its over. Same thing for 30 years so I know it well. I know this is not herpes 1 or 2. Anyway

Since this episode started over two months ago. I also had lesions and I had a dermatologist look at them and the scares too and she said she has seen this in immune compromised people who have EBV going on. That matched my EBV test via the internist I see.

Anyway its been two months going on number three and only two weeks of the H2 Blockers. I feel so much better its amazing. But I also feel it is not resolved and my immune system has not been able to put it under control. I am not sure if it is latent or active at this point and not sure how to tell.

Besides the H2 blocker I am taking things like and Lauricidin and Red Marine algae and Garlic and liposomal Vitamin C And liposomal Glutathione and liposomal Tumeric and things to hopefully help the immune system but also anti viral properties. Lysine has always helped me tremendously with normal herpes but it has not been a life saver in this situation.

I have never in all my years of CFIDS had an episode that feel like this ever. It is very strange and odd and does not seem to match normal symptoms or those that others talk about has stumped doctors too. But when they start thinking Viral they send you home to sleep and rest.

Concerns now. I can feel my spine getting numb feeling slowing moving upward every week it seems to go up a little more from bottom to top. My eyes are starting to twitch and have had vision issues. This is for sure affecting my nerves and nervous system and I am not sure if its just a matter of time now for my immune system to get this under control or how long I should wait to be more concerned.?

 

[SunMoonsStars]

http://neurology.about.com/od/Spinal-Cord-Disease/a/Infections-Of-The-Spinal-Cord.htm

I a suspecting the infection is in the spine and either started there or spread there I am unsure. This link shares all the infections that can be causative and maybe I should get a full viral panel and not just the EBV. The rash and sores I had are not Herpes 1 or 2 or shingles type. I had a dermatologist view them and they are what she said is seen in immune compromised patients with EBV.
I did have a penicillin treatment during this that gave me a rash all over and allergic type reaction and I never have had that reaction before and was even given an epi pen but I now see that maybe it was due to having the virus during the treatment.

• A small minority of people spontaneously present a rash, usually on the arms or trunk, which can be macular (morbilliform) or papular.[6] Almost all people given amoxicillin or ampicillin eventually develop a generalized, itchy maculopapular rash, which however does not imply that the person will have adverse reactions to penicillins again in the future.

• http://en.wikipedia.org/wiki/Infectious_mononucleosis

I also have been having the upper right under the rib area feeling a protruding nodule and some small aches there. Spleen area. It seems to be very slowly getting better and peaked a few weeks ago.