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fcefxer

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Everything posted by fcefxer

  1. DD20 is so seriously depressed and EVERYTHING makes her worse. Can someone please give me the name of the test? Nancy
  2. My son has severe nausea for years till we started trying to correct an imbalance of gut bacteria. we used lots of probiotics and sachoromises boulardi and addressed yeast aggresively with Diflucan and Uva Ursi and Oregan Oil. These things help correct gut bacteria and drinking Kefir helps the good bacteria grow and spread. Nancy
  3. http://www.healthcentral.com/rheumatoid-arthritis/cf/slideshows/10-facts-about-vitamin-d-and-rheumatoid-arthritis/vitamin-d-deficiency-affects-genes-for-cancer-autoimmune-disorde/?ap=825
  4. Namenda regulates Glutamate. If glutamate is the problem then it would help. I don't know if NAC does regulate glutamate as well. I know Namenda does have some potential side effects, so if NAC is doing the job, I'd stick with it. My daughter has been on Namenda (20 mgs.) now for awhile. I don't think it's helping, but I think the reason why is that Glutamate is not her issue. Nancy
  5. I'm a firm believer that there are no prices listed because the doctors decide what their cut will be when it comes to Great Plains and Metametrix. Our DAN told me if I prepaid it would be $99 for this one http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects In fact I was going to only get the G I Effects Microbial and he told me the complete 'soup to nuts" one was less prepaid. He knows I'm poor so maybe he gave me his good price? I don't know, but I'd be asking your DAN...... LOL Nancy
  6. As a baby, DD20 could not tolerate corn (syrup) in baby formula after I gave up breast feeding.... I guess we have another thing to look for now. Thanks Nancy
  7. Well, I think someone who has not been on antibiotics, has no immune issues, and no psyche issues would be a good start. I'll get it screened locally for aerobic and anerobic bacteria. Any other suggestions? Nancy
  8. Onward in our stomach bacteria battle. Dr. Mike Silverman of Toronto says as long as stool is screened ahead it is perfectly safe to do an "at home" stool transplant. http://www.slate.com/articles/health_and_science/medical_examiner/2011/01/the_enema_of_your_enemy_is_your_friend.html Since the vargus nerve runs from the stomach to the brain, and only c-diff drugs have helped her (although not permanently)This makes the most sense. Now to find a donor without our crummy immune systems.... Nancy
  9. My DD was recently dx'd with PANDAS post strep infection (3 months ago) and was just tested at Rothman as HIGH for both Lyme and Mycoplasma as well, so, ours is definitely pre-IVIG txtmnt as we have not had any yet. We are on way (Sunday) to NIMH for the IVIG study. I will keep you posted. Could you please tell me what Rothman is? thanks! Nancy
  10. I've always just used one sample (in a cup with green lid). But it would make sense to test three different samples, since its not always present in the entire stool. I've also done the metrametix and great plains lab stool tests, both show levels of clostridia - but they are not covered by insurance. A friend of mine had severe diarrhea for some time. Her doctor told her no way it could be c-diff. I told her to get tested anyway. It came back negative. I then told her to demand to be tested again. It was then positive. She was in so much pain until treated. She went months until I told her t
  11. Yes Flagyl is an antibiotic for c-dif. But I did not use it during the time I used another one. We get so close, then it always falls through. She has responded ONLY to c-diff drugs, but then it stops every time. Between that and the kids who are bullying her at school, life has been more than cruel to her. I did look into stool transplants and I think it's a great idea. The doctor in the Bronx who does them would not take us without a referral and then, only if we participate in a blind study which means my daughter could be treated with her own stool, thus not get better. She could LATER
  12. I was wondering if I missed the answers to these questions posted... ADD poster child here. What were the 4 R's? I only heard remove.... and What if the stool sample shows strep? We can't use antibiotics except Flagyl as c-diff gets those tics, OCD and rages pumped. I'm wondering if Garlic and Golden Seel might be an option? http://www.ehow.com/info_8472615_herbs-kill-bacteria.html Nancy
  13. http://www.sciencedaily.com/releases/2001/03/010320074915.htm For $0.10 a dose, when they sell it.... Nancy
  14. sorry - not trying to belabor the point -- i believe toxoplasma is traditionally thought of as a gut infection. if it was another dr and not dr T that you have discussed with, i'd say discuss toxo with dr T b/c i am quite sure he is very knowledable about it. Really? Good to know. I will! Thanks. So if we had a comprehensive stool test from Great Plains and they said "no parasites" I'd say we're covered then. Also sent one to Metametrix (which is much better and 1/3 the price. I asked Dr. Cunningham and she said it sounded like either anaerobic or aerobic bacteria. Metametrix ch
  15. sorry - not trying to belabor the point -- i believe toxoplasma is traditionally thought of as a gut infection. if it was another dr and not dr T that you have discussed with, i'd say discuss toxo with dr T b/c i am quite sure he is very knowledable about it. Really? Good to know. I will! Thanks.
  16. i don't understand -- the scan ruled out toxo infection? They told me toxoplasma gives brain lesions... no lesions, no toxoplasma. But the doctor was a jerk.... any way we know it's the gut. Nancy
  17. PANDAS kids or their parents as well as doctors. I don't suspect many parents feel comfortable having their kids filmed while feeling badly but they may feel it's important to get the word out and show the dramatic effect it has on our kids. In fact before and after films would speak volumes. I am extremely proud of her. She has seen the struggles we went through, especially in the early years trying to get the doctors to do something. We STILL have to fight to get what we need. (We asked for a stool sample in the emergency room and the psychiatrist was sent in.......) I talk to Dr. T a c
  18. no -- mono is EBV. west nile is transmitted by mosquitos -- can cause different encephalitis-like illnesses -- general thought is that you either have it mild and recover fine or you have serious illness requiring hospitalization. however, NIH funded in high dollar amounts a development of treatment-- not sure where it stands now. i think it's like so much else -- you can have the virus, it IS causing trouble, but no one realizes that is the root cause. right now, i don't believe there is really a treatment for west nile -- you support the symptoms when they are severe. although i h
  19. wasn't it you who took things out on your flowers one year? i recently moved into a house that is in serious need of yard clearing -- maybe you can come down and help?! earlier this summer, i found the hacking of over-grown plants quite therapeutic. ROFL! Yes, I leveled my perennial garden and took out all of my frustration, anger.... It felt darn good too, but looked a bit funky... Sure I'll lend a hand! Heh Heh Heh. Nancy
  20. Well my daughter has finally decided that it's time to make the PANDAS documentary DVD. She's working on the format and story line and we will have casting calls both in the Boston area and NY/NJ area. Hoping to get the school to allow her to use a camera, lights.... and her film major boyfriend is specializing in cinematography and lighting, we're hoping for this to materialize soon. If interested, be thinking about a BRIEF way to tell your story. More details to follow. The objective will be to of course raise awareness, and hopefully funding for the PANDAS/ PANS Center for treatment and res
  21. Good thought. She had an MRI and no lesions. It is DEFINITELY in the gut. So far the most success has been with one dose of Flagyl instead of two and extra keifer and those Jarrow probiotics with the yellow label. Of course the horrible girls at school who dropped her from their group and bully her, makes the tics ramp up. Yes I saw the dean who does nothing because no one else sees what they do. I'd like a nice lobotomy for Christmas at this point. Nancy
  22. Dr. T. did order West Nile (that's mono right?) I must look back through records to see what it said. How are you treating West Nile that's high? Acyclovir? We did try that and tics seemed worse but EVERYTHING made them worse then so may have been something else... Thanks for your thoughts. Keep em coming! Nancy
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