Cimetidine and it's role in immune response

[jimTheBassPlayer]

Hi,

 

My name is Jim, my ds11 has been having vocal tics for about a year and a half or so .... within the last few months motor tics were added to the mix and he was diagnosed with Tourettes. Then mild ocd and anxiety entered the picture, and as I began googling OCD I came across Pandas. ds Has had strep 11 times in his life ... but he always presented atypically ... no fever, no sore throat ... he'd get a red butt with some red dots on the butt ... and possibly throw up .... swab the butt , positive for strep.

 

So I immediately began to suspect a Pandas connection. Pandas has only been on the radar for about 2 months, and I've been looking into everything, and we've been seeing Dr. T, as well as non-Pandas doctors ... ds is seeing a psychologist too just to help with dealing with this, and he's doing great in spite of the tics.

 

So ds has been on Augmentin, and did well on that ... Zithro which didn't seem to work as well ... with Diflucan in the mix to address Candida. Right now he is off all of this and we are giving him a bit of a break, and approaching as vanilla Tourettes. Retrying Augmentin will be the next step if things get worse and we want to go further down the path of confirming or ruling out Pandas.

 

But in the process of dealing with the issues ds is having and researching all of that ... along with some health stuff I have been going through (minor stuff, but it got me thinking) I came across an idea that I wanted to share with people who have had a little more exposure and involvement in Pandas to get your feedback.

 

As the thread subject states, this has to do with Cimetidine (Tagamet), and it's role in possibly promoting immune response.

 

I first became aware of Cimetidine's role in immune response when my dermatologist suggested I try high dose Tagamet to treat some stubborn plantars warts that were not responding to other treatment. After over 10 years of having these on my right foot, after a month on the Cimetidine, a noticed a change in the warts, they felt "dead" and within a few weeks that had completely disappeared.

 

There is some info here...not the best link in the world, but it's just the first one I grabbed.

 

http://dermatology-s10.cdlib.org/92/reviews/cimetidine/scheinfeld.html

 

But there is lots of other info as well if you google. Tagamet is an FDA approved treatment of warts.

 

Now recently with ds I have been reading a lot about Candida, and how it can cause intestinal problems, skin problems, sinus problems, ear problems etc etc. And how after antibiotic use a candida flareup can be quite common, and have been monitoring dd for signs of that, and we have attempted treating him for it as well.

 

Now I recently, after a long stint of not being sick at all, had some allergies/head cold/sinus infection ... don't know which really, but my ENT did prescribe antibiotics, which seemed to help … then I developed a rash, which is candida, and I am treating with Lotrimin … and my sinus troubles have returned … and that may not be candida, but I certainly can't rule it out … but now at the same time … after a year … a wart is returning on my foot … and I am thinking "why is this all happening now? what is going on with my immune system?" And that's when my mind returned to Cimetidine … and how it had helped the warts the first time, and whether or not I should do it again … and I also wondered about it's relationship with Candida, since I clearly had both … that's when I stumbled on this article.

 

http://www.thecandidadiet.com/forum/yaf_postsm28630_Cimetidine-Tagamet--Restoring-Cellmediated-immunity.aspx

 

Now both links discuss Cimetidine's role in cell mediated immunity … and this article also discussed mercury's and antibiotic's role in flipping a switch on the cell mediated immunity, and putting the immune system in a state where it will not fight certain infections …. viral in the case of the warts … yeast in the case of Candida …

 

Which is what got me to think if people could also have a similar immune suppression with bacteria as well ? And could that possibly be a factor in PANS kids ? And has this ever been considered or tried … is it possible PANS children's immune system might possibly respond to high dose Cimetidine to restore cell mediated immunity that had been turned off by Mercury and/or ABX ?

 

Child receives immunizations and/or dental work with mercury … or takes abx … and the cell mediated immunity is altered (T1/T2 balance). After that, at some point in the future, they encounter some infection that their body decides not to fight due to this change in their immune system, and they remain helpless and defenseless against these exposures without abx etc until their immune systems can be "turned back on" so to speak.

 

I'm no doctor, and I'm new to Pandas .... but I just wanted to see if anyone thought the idea had merit, and if anyone else involved with PANS had considered or tried it.

 

-Jim

Edited October 5, 2012 by jimTheBassPlayer

[Chemar]

Hi Jim and welcome

 

I just want to add a note of caution here about Cimetidene/Tagamet as ,although my son did not take it for PANDAS/PANS, he was on it for a while for Crohn's Disease reflux symptoms (also an autoimmune illness) and during that period began to have horrendous hallucinatory "nightmares" that occurred nightly in a half sleep state ie either just as he was falling asleep or during semi waking phases of sleep. He felt as though what was happening in the "dreams" was very real yet could not physically move or cry out and we would find him in a state of total panic, bathed in sweat and terrified!

 

At the time we did not know what was causing these hallucinations until our savvy naturopath mentioned that there were reports of this happening with Tagamet. On further investigation, we decided to take him off it and instantly the hallucinatory half-sleep nightmares stopped!

[MomWithOCDSon]

Jim --

 

I do think there is probably a histamine component to a lot of our PANDAS cases, and Dr. T., I've read, also thinks there's something to the histamine connection. Some of our kids have actually been prescribed anti-histamines (both prescription like Vistaril and OTC such as Pepcid), and some of us have begun using the OTC H2 blockers and seen good results.

 

We've been using Pepcid -- sometimes regular strength (10 mg.) and sometimes maximum strength (20 mg.) with our DS for several months now and see a positive impact on both behavior and another auto-immune condition (eczema) as a result. If you search the forum, you'll find other threads on the topic; I believe one family's doctor actually prescribed 40 mg., twice each day, of famotidine (Pepcid) for their PANDAS child.

 

I haven't looked into the "turning on or off" immunity via any of the histamine blockers or antagonists, and I wonder if Pepcid might be capable of the same action as Tagamet, possibly without some of the Tagamet side effects. Dr. T. seems well-suited to answer our questions!

[jimTheBassPlayer]

Actually when Tagamet is prescribed for plantar warts it is at a much higher dose ... 30mg/kg/day which for me was about 2400kg, so I was taking 12 a day! Usually 4-8 weeks. If it doesn't work by 8 weeks it probably isn't going to. I took it for 4 weeks.

 

You are actually not relying on the histimine blocking properties of cimetidine in this case....it has been shown at these doses to have other immune modifying affects, and that's what we'd be going for here ..... specifically it's positive affects on cell mediated immunity.

 

-Jim

[LNN]

Actually when Tagamet is prescribed for plantar warts it is at a much higher dose ... 30mg/kg/day which for me was about 2400kg, so I was taking 12 a day! Usually 4-8 weeks. If it doesn't work by 8 weeks it probably isn't going to. I took it for 4 weeks.

 

You are actually not relying on the histimine blocking properties of cimetidine in this case....it has been shown at these doses to have other immune modifying affects, and that's what we'd be going for here ..... specifically it's positive affects on cell mediated immunity.

 

-Jim

 

You may want to see if you can strike up a conversation with Dr Theoharides at Tufts. He is a mast cell/autoimmune researcher who has looked into what role histamine plays in autism. http://www.mastcellmaster.com/

I would love his thoughts on the matter and to get him interested in PANS. I sent him an email earlier this week on a different matter and didn't hear back. But it never hurts to ask. Sometimes it takes several people bringing up the same questions before a researcher or doctor clicks with an idea.

 

FWIW, my DD has taken 20mg Pepcid for long periods of time and it did little for her Gerd or her PANS symptoms. But perhaps something else was hindering her progress at the time.

[jimTheBassPlayer]

Sure I'll shoot him an email...can't hurt.

 

Sure 20mg wouldn't have that kind of effect. Actually if my crazy little thought has any merit a couple of things would have to be true. The cell mediated immunity "off switcher" would have to be removed first ... that is abx and/or mercury (possibly there are others ?) ... ideally you would have a situation where there is no other underlying deficiency which might compromise immune function (Vit D, magnesium, zinc deficiency etc.), and then you could try 8 weeks cimetidine at high dose 30mg/kg/day and maybe it would jolt cell mediated immunity ... as to what effect, if any, this would have on Pandas symptoms ?? Want to clarify that I'm not suggesting anyone try this ... just wanted to throw the idea out there and see what everyone thought, and if anyone had come across a similar idea out there somewhere.

 

At the least if there was a persistent Candida infection making things difficult it should help the body clear that, if nothing else.

[WonderWhy]

Sure I'll shoot him an email...can't hurt.

 

Sure 20mg wouldn't have that kind of effect. Actually if my crazy little thought has any merit a couple of things would have to be true. The cell mediated immunity "off switcher" would have to be removed first ... that is abx and/or mercury (possibly there are others ?) ... ideally you would have a situation where there is no other underlying deficiency which might compromise immune function (Vit D, magnesium, zinc deficiency etc.), and then you could try 8 weeks cimetidine at high dose 30mg/kg/day and maybe it would jolt cell mediated immunity ... as to what effect, if any, this would have on Pandas symptoms ?? Want to clarify that I'm not suggesting anyone try this ... just wanted to throw the idea out there and see what everyone thought, and if anyone had come across a similar idea out there somewhere.

 

At the least if there was a persistent Candida infection making things difficult it should help the body clear that, if nothing else.

Very interesting! Thanks for bringing this up