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fcefxer

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Everything posted by fcefxer

  1. DD20 became very sick AFTER 9 days IV Doxy after being on low dose Omnicef. She started with powerful vocal and motor tics and intense OCD, anger... For months, we tried minocycline Augmentin, Omnicef again, EVERYTHING. Nothing would help and every antibiotic made things much worse. We figured that if every antibiotic made it worse, it had to be c-difficile or something like it. during this time the only thing that would bring relief was Cholestyramine powder, given 3-4 times a day. Since it does bind to toxin A and b in c-diff, again we felt we were on the right track. Did 3 weeks of comp
  2. Yes, treating it too, and thanks! It just became bad when she upped the Flagyl.
  3. Hmmmm, I'm pretty sure the probiotics were used by her when she was doing OK, but thank you for thinking of these
  4. Now tics much worse. Any ideas? How could this work at first, then stop? We are still taking lots of probiotics and duflican as well as the flagyl. So upset
  5. My PANDAS daughter took Vancomycing for 2 weeks, her vocals finally stopped but then started up again. we used Cholestyramine which I'm sure lessened the effect since it pulls out toxins and everything in it's path. We started Flagyl. My daughter only took one dose instead of two and in 6 days was just about tic free. I found out and told her why she needed to take the whole dose. Since then, she has still had tics a week later. They are much improved but we can't get them entirely away. Today was a little worse. She had not been this good in ages so I'm terrified. Flagyl does make her depress
  6. My daughter took Vancomycing for 2 weeks, her vocals finally stopped but then started up again. we used Cholestyramine which I'm sure lessened the effect. We started Flagyl. My daughter only took one dose instead of two and in 6 days was just about tic free. I found out and told her why she needed to take the whole dose. Since then, she has still had tics a week later. They are much improved but we can't get them entirely away. Today was a little worse. She had not been this good in ages so I'm terrified. Flagyl does make her depressed, so we decided to switch back to compounded Vancomycin syr
  7. Solved my own mystery. According to Drugs.com: Side Effects of Flagyl: Psychiatric Psychiatric side effects have included irritability, depression, and decreased libido. We are the only people that I know of that this happened to. I confirmed the possibility with our wonderful pharmacist. We will switch to Vancomycin.
  8. Has anyone found depression occurred as a result of treatment with either Vancomycin or Flagyl? What do you do for severe depression? We just started treating Thyroid and increased Vitamin D. SSRI's are always bad but thinking slow and low Welbutrin? HELP!!! Nancy
  9. The doctor who helped this woman almost killed my friends PANDAS son. Just an FYI....Not a good PANDAS choice. Nancy
  10. That's what I was thinking too, but it's good to have backup. Dr. T. is treating a second PANDAS child with Flagyl, who was not getting better and that child is responding as well. I read somewhere that something like 85% of a group of criminally insane people were tested and found to have high c-diff.... certainly possible with the antibiotic use this disease requires. Nancy
  11. After years on Omnicef, we did 9 days of IV Doxy to kill mycoplasma. This brought on what we assume to be c-diff as any antibiotic we tried increased the new vocal and motor tics and OCD. Two weeks of Vanco took away the vocals. we get it compounded and relying on a college kid suffering from PANDAS to take it 4 times a day was too much so we split the fourth dose between the other three. We lost ground and my daughter refused to try any more. During this time we used Cholestyramine powder which had helped so much as it binds to Toxin A and B of c-diff. That was a mistake as it takes out the v
  12. You might be interested in this http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseasepresenting.htm Dr. T ordered it for my daughter but in the form of injection instead. Have you every tried Cholestyramine powder to see if it helped? If so you may want to test for anaerobic bacteria in a stool test. Dr. Cunningham said to check that and treat with flagyl. Vocal tics are often clostridia difficile related. Has your son been tested for that? He does NOT have to have diarrhea to have it. Dr. T has been seeing some PANDAS kids getting whole new problems from continued extreme antibiotics.
  13. Thanks everyone. We are trying this in injections instead of IV http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseasepresenting.htm Pray it works. I'm backing way off. Nancy
  14. My DD20 has had one heck of a PANDAS out break and we are hoping to kick it (again)going on 8 months now. She was a tiny bit ticcy and depressed (from severe bullying) I thought OH NO her mycoplasma is a little elevated. Got her 9 days of Doxy which gave her horrible OCD, Horrible vocal and motor tics. I kick myself daily for requesting it and ruining her life. i quickly tried additional antibiotics with every antibiotic making her worse. we finally figured that the only thing that made sense was c-diff. We treated for two weeks with vanco and the vocal disappeared. Only to return. I suspect s
  15. http://au.news.yahoo.com/today-tonight/latest/article/-/15267188/bonnie-treated-and-transformed/ Nancy
  16. Well yesterday my Clerodendrum inerme (L) Gaertn came. I was so excited! I had searched over 3 continents to find someone who would send me some. I had spoken with an herbalist on how to make the tincture. I painstakingly washed every sprig of the three, extra large storage bags filled that were sent to me, removed the leaves on most and put some in water hoping for roots. I put the leaves, bunch by bunch in the food processor to make the juice exposed and submerged them in Vodka overnight. Total it took about 4-5 hours, but I didn't care! Today I drained some extract out and excitedly drove 3
  17. Dr. T said to let people know they are still stuck at home with so many trees down and no power anywhere. He will help us all as soon as he is able. He's not sure he can get to the Lyme Convention this week because of the destruction near his home. He's trying but things are just so bad there by his home and office. Nancy
  18. I did, thanks. If anyone knows how to get ahold of her, please ask her to check her messages! Thanks! Nancy
  19. I will have it by Monday I think. I will post as soon as I give first doses Try this link Fixit or go to Pub Med and type in the full plant name http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=19617461 Evid Based Complement Alternat Med. 2012;2012:284301. Epub 2012 Jul 15. Clerodendrum inerme Leaf Extract Alleviates Animal Behaviors, Hyperlocomotion, and Prepulse Inhibition Disruptions, Mimicking Tourette Syndrome and Schizophrenia. Chen HL, Lee HJ, Huang WJ, Chou JF, Fan PC, Du JC, Ku YL, Chiou LC. Source Graduate Institute of Pharmac
  20. After 2 weeks on vancomycin my daughter's awful vocal tic was just about gone. Today it's back with a vengeance. I know when you treat c-dif and we are treating yeast with duflican, that then klebsiella can be a problem. DAN said oil of Oregano and UVA Ursi. Anyone have any other treatment options ASAP please. Life has been a nightmare at college. I need to fix this now!!!! Nancy
  21. After begging, pleading and praying and through a tremendous amount of help from some wonderful people I have secured some Clerodendrum inerme (L) Gaertn. From Australia. Here's why: http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=19617461 and http://www.ncbi.nlm.nih.gov/pubmed?term=Clerodendrum%20inerme%20Tourette I can not wait to try this as it sounds like a PANDAS fix. I'll keep you posted. Nancy
  22. The c-dif takes 3-4 weeks to clear well. we get the compounded syrup vanco which does a good job coating the intestines. if you don't remove the dead toxins you will still hve symptoms. We use Cholesstyramine powder but charcoal or bentinite clay work well too. Youy need to keep detoxing for awhile after to get all the dead stuff out. Continue with probiotics at least 4 hours after each detox and I usually give a ton at bed so they can stay there all night. Sacromyces (sp?) bouillardi is not killed by antibiotics and can be given any time to help kill c-dif. I would treat this completely befor
  23. Dawn, there is no one better. Dr. T genuinely cares about each and every PANDAS/ PANS kid he sees. He will take in to account your thoughts and questions as well. He keeps incredible data about our kids to find the pattern to help solve the puzzle. You'll love him. Nancy
  24. Called my brother who I love the other day. I was so upset from dealing with this. Two kids, no life for them, yadda, yadda, getting into it with hubby... You get the picture. Instead of support and a place to lean on, he told me they were this way because I made them this way. All these antibiotics, just get them good therapy and teach them how to deal with people and they'll be fine. (Funny when his daughter had severe OCD and he and his wife had to take turns sleeping at her house 3 hours away ((she was 25)) that wasn't his bad parenting, it was genuine.) He went on to say there wasn't a pe
  25. So watch your vitamin C means get more, or don't take too much? Also if my son is allergic to sulfur, I suspect MSM might not work? He did take molybdenum before. Nancy
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