Jump to content
ACN Latitudes Forums

fcefxer

Members
  • Content Count

    907
  • Joined

  • Last visited

Everything posted by fcefxer

  1. Dear Colleen, They are doing a casting call in Boston soon. I think she has most of the specific kids stories but maybe a group shot? I don't know exactly what their artistic plan is, but they are definitely having a casting call in Boston, NYC and LA now (goodbye frequent flier miles...)I will be sure to post here as soon as I know the date. Were suppose to record Dr. T.'s PANDAS speech at the Osteopathic Symposium in Maine Saturday but I'm thinking we're getting a foot of snow.... This weekend two newspapers in the Fitchburg, MA area are interviewing them as well as WABI TV in Maine. T
  2. Thanks for this great info!!! Nancy
  3. Well my DD film maker has been working hard on the documentary. They hope to have the trailer done Wed and viewable by Mon or Tues. My poor daughter has had the cold/flu to end all this week and end of last so that put things back a bit. They have a crew ready to make this amazing story and hopefully will be able to travel to more cities to have their casting calls. Join the fan page here: https://www.facebook.com/PANDASdoc and the web site is up but I don't have the URL yet. Woo Hoo! PLEASE spread this to other PANDAS/PANS/ Lyme groups if you feel comfortable doing so. Nancy
  4. What does <2 ERMI in home mean please? Also she has no tonsils. Thanks, Nancy
  5. I thought BEG spray penetrated biofilms? Where can I find a dentist that does this? Antibiotics are a problem with her. thanks, Nancy
  6. Our DAN Dr. Wu thought we should check the deep nasal folds for staph and yes DD is loaded!This BEG spray is what she'll be taking,https://www.rxandhealth.com/compounding/products followed by Rifampin if needed. What's super funny/ odd about this is she was doing so much better already using Jarrow brand Jarro-dophilus (8 a day) and Jarrow Saccharomysis Boulardii (3 a day). The L-rhamnosus strain of probiotic is a cytokine lowering, anxiety reducing miracle. She still has some tics but can function darn well. Anxious to see what it will do to reduce this infection. I'm guessing it is our PANS
  7. Another mom told me that FOS which feeds probiotics, which I think is Inulin, also feeds yeast. Best to go with non-FOS or non Inulin. Unfortunately they are putting it in everything now. we found Culturelle did nothing for us, but using 6-8 Jarrow brand Jarro dophilus 3.4 has had a hugely positive impact and pretty quickly. We take 6-8 in the AM and 2-4 at night. They make it with FOS and without. My DD only had slightly elevated yeast, so she was OK on the FOS one but since hearing about FOS, we switched. Nancy
  8. Unbelievable. Trying to find a safe, non mind altering method of birth control and it is becoming impossible. Getting Implanon implanted birth control taken out today and thought an IUD would be great accept now I find it elevates copper levels. Will this create more problem? OK God, can you cut us a break please????? Nancy
  9. You can also email to nitrogenandoldlace@gmail.com Thank you for so many of you liking the fan page! 100 "likes" so far! Shelby is working with her Documentary professor doing an independent study so they are only working on this project! Needless to see, through dumb luck, we found a way to stop the tics and she's going back to school and ready to make this the movie that needs to be made, from the perspective of someone who's lived through it, twice. She is starting to receive stories. The story line will be completed Wednesday. Soon we will post the casting call dates. Please contac
  10. We did a stool transplant and my daughter became much worse. I can't understand it as every study I read, like this said it worked great. We asked two doctors and they agreed it was genius. My only guess is that when we had prior stool analysis we found most people have a few kids of strep in their gut and it is fine for them. My guess with DD was that perhaps it increased the amount and she is a PANDAS kiddo.... We did a Great Plains Stool analysis for her which showed the strep. Maybe that should be run for the donor stool to rule that out as well as C-diff and parasites... I still think a s
  11. Well, Shelby is preparing to start shooting the Documentary on PANDAS. She has been talking with many PANDAS teens who want to tell their story. Maybe you do too? If you are interested, please send the following: Your child's story, written briefly. If they feel comfortable send short before, after and after that video. Please put this on a CD. Include a printed release saying Shelby Tozier has permission to use your child's story, likeness or photo. Sign and date it and say that you understand it will be used in the documentary titled, "PANDAS, A Real Life Case of Dr. Jekyl and Mr. Hyde." Vis
  12. Cholestyramine has been a God send! Three times today! Also doing an anti inflammatory diet. So many fruits, veggies and water. Gave her a Flagyl too and bed time will be her jarro-dophilus 3.4 with FOS (yellow label) which is a great anti inflkam, anti bacteria formula. Pray it helps. DAN thinks staph in nose fueling the fire. Going to see gastro too. Besides Quercitin, what else can calm a over active immune system? OhI forgot giving Advil 3 times a day. Still not great! Thanks, Nancy
  13. Implanon is supposed to be progesterone only. I did not say that I'd read progestin was good for immune disorders. the literature was pertaining to the stool transplant. We are in a nightmare and no idea what to do. Started Flagyl just in case.... Nancy
  14. We tried our thoroughly screened stool transplant on Jan 2. On Dec we got an Implanon birth control implant. We now live in ###### again. Doctor said no way stool transplant could do this, but who knows. I read later that Implanon should not be used if Sydenham's Chorea develops. Doctor had said so little hormone, very safe.... Daughter will not have the implant removed. Can not get a good stool test as described by Dr. Cunningham, it should be kept in an oxygen free container as oxygen kills the bacteria. Can not find a hospital that has these so I could mail it to ARUP lab in Oregon I think
  15. My daughter finally consented to the stool transplant. I'm so excited. They are claiming it cures a bunch of immune disorders, getting the right, bacteria fighting flora back in the gut. Our Primary care had even heard of it and was super excited about setting things up for us. She told me about even more immune diseases it has stopped. They have even found that if you are heavy and find a healthy, naturally skinny donor, you will become skinny! I'm searching for that one for myself! Keep us in your prayers that it works!!!!! Wednesday at 7AM!!! You know you have a good friend when they will
  16. Is he slightly better off the antibiotics? Have you tried bentonite clay or charcoal to detox? It could be C-difficile which is brought on by antibiotics and every one you continue to try will make no improvement. He does NOT have to have loose stools to have this. It's what my daughter has and we are doing a stool transplant from a healthy donor on Wednesday. They claim it rights bad immune systems. http://www.ncbi.nlm.nih.gov/pubmed/20117243 If you can try Flagyl, it will make a difference fast. The key clue for us was that no tried and true antibiotics would touch it. Lots of Culturelle too
  17. Just venting here. DD20 is again getting bad. She will not try anything new. In spite of a promised 90-95% success rate for stool transplants curing c-difficile, which is her PANS infection, she is reluctant. She yells and swears at me. She wants everyone to feel sympathy for her, and I do but you need to try new things if the old ones stop working and work hard at ERP therapy. She'll do neither right now. I'm told I won't take your f-ing medicine, or go to your f-ing doctors when she is flairing. If she would just do as she is told or try new things. Instead she yells at me. I'm so frustrated
  18. We found C-difficile was our PANDAS infection that was causing big tics and sugar and carbs make it much worse.
  19. We found that even though Dr. Jeneke does believe in PANDAS, the other staff had heard of it but pretty much dismissed it, at OCDI. I think 17 is the youngest they take there. Our experience was "OK" there, but not REALLY PANDAS friendly. My daughter had a bad sore throat while there and when I asked for a strep throat culture, they said no. She had a feminine infection and they refused to treat that either and forbid me to get it checked out either................
  20. Kate Magonagal 9 Cedar St. Worcester. She is $150 an hour. One of few trained in ERP. drkmcgonagle@gmail.com Tell her, her clients from Maine sent you. She is very good. Nancy
  21. The more I learn about c-diff and the MAJOR psyche issues, motor and vocal tics it can cause, I'm truly beginning to think a LOT of the PANDAS kids that still aren't better quickly are c-diff kids. It is a tough infection to fight, yet gives HUGE pandas symptoms!!!!! Since it is resistant and reoccurring, we are doing a stool transplant. Detoxing with bentonite clay helps pull Toxin A and B out of the system, keeping things at bay. Flagyl helped greatly for awhile. Stool transplants are curing MS. http://www.nubiome.com/blog/cutting-edge-multiple-sclerosis-research http://www.bodiesthe
  22. I PMed you. The more I learn about c-diff and the MAJOR psyche issues, motor and vocal tics it can cause, I'm truly beginning to think a LOT of the PANDAS kids that still aren't better quickly are c-diff kids. It is a tough infection to fight, yet gives HUGE pandas symptoms!!!!! Since it is resistant and reoccurring, we are doing a stool transplant. Detoxing with bentonite clay helps pull Toxin A and B out of the system, keeping things at bay. Flagyl helped greatly for awhile. Stool transplants are curing MS. http://www.nubiome.com/blog/cutting-edge-multiple-sclerosis-research http:/
  23. Maybe he is just healing and his body needs rest to do so. Been through a lot. I would test for mono but it could just be healing.
×
×
  • Create New...