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Everything posted by jimTheBassPlayer

  1. Marcel is just a dad with a daughter with Pandas, who has worked with Dr T to set up this weekly radio show. It's great that he and Dr T have put in the time and effort to do this. Very helpful.
  2. Low iron can be an indciation of Candida ... which is understandable given the antibiotics your son has been on ... were any probiotics in the picture ? (although that would not always be sufficient, as abx will fight against any non-yeast probx ) Certainly see a Pandas specialist, and have Candida on your radar, as that can certainly be part of the issue. -Jim
  3. Florastor is also a yeast probiotic, if you want to try that route. And yes most yogurt has Strep Thermophilus so you have to watch for that. You can make your own yogurt if you like ... there are some good yogurt makers out there that make it pretty easy. Then you can use your own starter that you know is strep free. Some of the starters at the link below have Strep, some do not. https://www.culturesforhealth.com/choosing-a-yogurt-starter-culture Also, you can ferment ( culture ) vegetables as well .. ( think saurkraut ) Here's a Barringer article on that. http://nutritionaltherapy.com/taking-the-mystery-out-of-culturing-your-own-superfoods-by-caroline-barringer-ntp-chfs-fes/ Or you can buy her products here http://www.immunitrition.com/products.php However it is not clear whether her starter contains strep or not, so I would be cautious. This would be a good route for probiotics for people that are also trying to avoid dairy. Correction, found her starter ingredients ... no strep, so that's good news. http://www.culturedvegetables.net/Vegetable-Culture-Starter-011.htm?categoryId=19 -Jim
  4. You can find instructions on their website I believe. I think that they say to start with a teaspoon and work up from there. Yes, this link has that info. http://www.vitacost.com/natural-vitality-natural-calm-raspberry-lemon Also, what blood tests are you having done ? You say your daughter was sick, was it a fever sore throat episode ? Or something different ? Does your pediatrician "believe" in Pandas ? -Jim
  5. Live in Northern NJ and want to find a good environmental doc to hopefully help find sensitivities and triggers for my DS11. Any advice or direction would be appreciated. -Jim
  6. Chemar, Haven't noticed any negative effects of using the Mag Chloride as opposed the the Mag Sulfate. And while I knew that the Mag Sulfate can address Sulphur deficiency as well as Mag deficiency, I am not familiar with the detoxing effects of Sulphur. Could you provide some info about that ? Also, I've just started using the Natural Calm kids liquid multi, and so far it seems to be helping my ds ... the ingredients seem pretty straightforward and safe, however the inclusion of the DMAE is the one thing that I am not too familiar with. Googling hasn't really given me a lot of info, especially about it's safety and possible side effects. Wondering if you have any experience or info on that as well. -Jim
  7. The magnesium sulfate in Epsom Salt can sometimes be irritaing in high concentration. I use a medical grade Magnesium Chloride liquid from Health and Wisdom to do the magnesium soaks...little pricier, but the gallon bottle lasts a long time, you don't have to trouble with dissolving it, and it's less irritating on the skin. Oh and just tried Natural Calm for first time yesterday ... after being very motor ticcy all weekend with head rolling, nodding, clapping ... really the worst he has been, not sure if it's coincidince, but they basically disappeared after the Natural Calm ... problem is he can't stand it ... need to get creative on how to get this in him if it's going to make that dramatic a difference in his ticcing.
  8. Does eczema indicate yeast ? My ds12 just started showing nummular dermatitis ... and i have suspected yeast for a while ... is this another positive indicator ? I have been bumping up his probiotics lately and he's ticcing pretty bad ... healing crisis ? Or conincidence ? There are so many other factors with the tics that we have not ruled out. -Jim
  9. I agree. While allergies can trigger, I do not believe that something HAS to be an allergy to trigger. Dyes, MSG for instance, being good examples.
  10. Hey Everyone, My DS11 now has a red circle on his butt ... dermatologist said dermatitis ... I believe nummular, it's the only one that comes in coin sized circles ... apparently triggerred by allergy, exacerbated by dry skin ... chronic ... avoid triggers they say lol, sounds like Tourettes. Getting me thinking that allergy could be a definite trigger for all of this. Does anyone else have any experience with this ?
  11. I think I found it. http://esciencenews.com/articles/2010/05/27/nobel.winner.ties.mental.illness.immune.defect
  12. Hi the top link does not work as you posted it ... you need to post an un-shortened URL (without the elipsis)
  13. Are you refrigerating the liquid augmentin ? It will lose potency within 24 hours at room temp.
  14. 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.
  15. 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
  16. As a kid I learned to swallow "pills" because I hated the taste of Lima beans, and preferred swallowing them whole to eating them. lol
  17. 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
  18. If supplementing Vitamin D especially at higher doses it is also important to make sure that the various vitamin D cofactors, especially magnesium, are present. All the Vit D in the world will not have much effect if the child is magnesium deficient as well, Vit D needs Magnesium to do most everything that it does.
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