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  1. Hello everyone, I was originally diagnosed with PANDAS in 2004 at the age of 5. I experienced severe tics, OCD/anxiety, behavioral issues, and sleep problems. At this time, many doctors had no knowledge of this disorder, so i was prescribed both penicillin and clonidine. At the age of 12, my symptoms had almost completely disappeared. I still had all of the symptoms when first diagnosed, but not nearly as severe. I'd say my PANDAS has been in remission for a while, but recently it has come back and it is extremely severe. However, since I am no longer considered a pediatric patient, I do not
  2. My son is 14 and we have not had much success with any protocol, keeping in mind he has been reluctant to participate in almost everything. I have been in touch with Dr Mary of Marys Herbs concerning her OCD protocol that pertains to thinning myelin sheath. I am looking for parents that have used her protocols to share their stores and effects the treatment has had. Thank you!
  3. Does anyone know any psychiatrists in New Jersey who is specialized in ASD with OCD/anxiety? You can send me the information to my personal email account: louisalaw@gmail.com. My son is 18 years old with ASD. His current challenge is severe OCD. Thanks so much. Louisa
  4. I found Mary Reed from Safe Harbor website. I filled in the questionnaire she provided regarding my son’s condition, mainly about his OCD. It then came out with some supplements suggestion, and one the them is Evening Primrose Oil. Does anyone know or have experience on its effects on OCD or anxiety? Thanks Louisa
  5. Hi, My son used to have mild OCD. But last summer, his OCD increased significantly. Dr. T found he had PANDAS and prescribed him with various kinds of antibiotics, which, unfortunately, made his OCD worse. Later, the Cunningham test showed he had autoimmune disorder and was prescribed with Prendisone, which even made his OCD much worse. So we stopped all these medicine. And later, with increased probiotics, his OCD was relieved. Although it was still significant, it was within a tolerable level. Last week without a clue again (or maybe due to increased social anxiety in school), his O
  6. Hi My son was taking inositol for his OCD as recommended by his integrative psychiatrist this April, but his OCD became a little worse. He is also taking a lot of other supplements,including lithium orotate. I have just learnt from different website that Inositol cannot be taken together with Lithium, as it seems to block its action. Has anyone ever heard of that? Please share your experience in using inositol for OCD. Thanks Louisa
  7. I just wanted to share what we've discovered with our 8yr old son. My son has had these type symptom during allergy season but not as intense as this year. WELL this year we started giving him Allergy Immunotherapy drops and his symptoms increased majorly. I've referred to it as OCD but honestly its a mixed bag of OCD, vocal tics, stimming/sensory stimulation. I connected the dots and had his histamine tested. Mind you, he had barely any noticeable symptoms. Occasional sneezing or cough. His histamine levels were 4x the high normal. Histamine is actually a neurotransmitter and can cau
  8. Is there a typical best antibiotic for treating myco pneumoniae? I have been on only the fairly common ABX before (zpack, etc) and noticed no change (except typically a worsening of symptoms - likely due to changes in gut bacteria?). Would appreciate any input!
  9. This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap
  10. Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what se
  11. Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better. Mid-February (2015): Our just-turned-four year old son, “A,” start
  12. Hi, please kindly advise me of what natural supplements I can take to alleviate OCD, anxiety, ADD and depression. I am a 41 year old mother who has two wonderful children. I am always the type of person easy to get worry and depressed. I now have two major anxiety triggers- 1) my son has chronic motor tics for 2 years now but under control for now 2) My older daughter has myopia and wearing overnight ortho-K lenes for 2 years to control progression but latest Nov retinal scan shows her retinas are thinned a bit, but no tear no holes. OD did said to me that she is fine and it is normal to hav
  13. Hi, I'm a 19 year old man, kid, idk I'm sorta in between man and kid. Anyway I've always been a sort of weird kid, but very intelligent and high functioning. I always had some tics and weird mood behaviors, social awkwardness, etc. but was more or less a functioning member of society so my parents never saw any reason to investigate further. Over the summer I met with a therapist for the first time to help sort out attention/studying issues that I was having my first year of college and I ended up being diagnosed with ADD and Autism, I also used to be a major strep carrier, as an infant I had
  14. Hello from Greece! My ds18 is diagnosed at 12 with PANDAS and 3 weeks ago diagnosed through Igenex with Bartonella! My son sudden onset was at 3 years old! Unfortunately the doctors here didn't know something then ( not even now) and my son was without correct treatment until the age of 12.Then dr. K diagnosed him with PANDAS and started Augmentin and some IVIG .In the begging of the treatment was better but after one year that stopped working .The major issues for my son always was OCD ,regression age ,dysgraphia,difficulties in social skills,sound sensitivity ,toe waking ,ADHD. 2 years ag
  15. Hi everyone! My son suffers from ADHD, Tourettes and OCD. He is on a low dose of stimulant medication (which makes his OCD and Tics worse, but he is unable to function in school without it). We have just started exploring dietary intervention along with supplements (we are researching both now). We know he is sensitive to gluten and dairy, but have been pretty lazy about adhering to a diet. In the past year or so, we have seen a sharp rise in his symptoms so we are motivated to modify his diet. I wanted to get a baseline of his symptoms before the elimination diet. My husband and I have long n
  16. http://www.livescience.com/49942-seasonal-obsessive-compulsive-disorder-cured.html I didn't think there would be anything here for us but it turns out otherwise. Drugs didn't work for OCD, light therapy did. Please look at Norman Doidge's new book "The Brains' Way of Healing." Second book on neuroplasticity of the brain. In one chapter, Dr Doidge talks about laser light therapy treating numerous auto immune conditions. Yes, I did call the Toronto clinic mentioned in the book about PANS. They said they couldn't help... unless someone in Toronto wanted to be a guinea pig and then
  17. Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences?? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie A16 IgG 1:1600 High titer Neg:<1:100 Coxsackie A24 IgG 1:1600 High titer Neg:<1:100 Coxsackie B Virus Antibodies Coxsackie B Virus, Type 1 1:320 High <1:10 Coxsackie B Virus, Type 2 1:80 High <1:10 Coxsackie B Virus, Type 3 1:16
  18. Hi there, I am a 23 year old female. I've been doing quite a bit of reasearch on PANDAS lately, and everything is just pointing to it. I developed a sudden onset of severe OCD at the age of 10, followed by a sudden onset of Anorexia at age 15. I also had PLMD at age 16. And at age 21, I started getting tic like sypmtoms and body movements (I'm not really sure if they were present when I was younger as well). As a child, I was in the doctor's office almost every month getting a throat culture for strep or had some sort of ear infection. I was sick quite often as a child. I even remember having
  19. Me again. Nothing is helping our dd. Nothing. Over 10 years of extreme anxiety, (and I do mean extreme), OCD, intrusive thoughts, anorexia nervosa, etc... We're always thinking we've found an answer, but it never works out. Current doc is beginning to think it's just her low weight causing all the trouble, even though we've told her repeatedly that this started years before the eating disorder, with urinary frequency and anxiety. Everyone wants this to be "mental" so they don't have to deal with it. Dd recently became extremely exhausted, nauseus, heavy leg feeling and temp as low as 94.
  20. I know that mycoP is hard to irradicate, but has anyone seen any improvements in behaviors very soon after starting treatment, or do we have to wait, wait, wait for any relief of these symptoms? She's on Doxy for mycoP and Nystatin for gut stuff. (Also some herbals for viral issues.) Being PANDAS, I'm sure there is more lurking in there, but this is what we're working on now. Just curious if anyone saw some relief from anxiety, intrusive thoughts or OCD quickly after beginning treatment. We need a little hope here!
  21. Although my dd has no stomach upset unless she is sick, I requested a H. Pylori test and it was positive. (I requested this after reading about H.Pylori causing psychiatric issues.) Like many of you, she tends to test positive for all kinds of stuff, although is asymptomatic physically and suffers mentally. I'm guessing the H. Pylori and other gut issues are causing her autoimmune issues and food sensitivities. My questions would be - have any of you treated for H.Pylori and seen diminishment of intrusive thoughts or OCD? (She has multiple other problems, but just wondering if anyone h
  22. Hello everyone, I'm 19 years old an have lived with an undiagnosed illness for eight years. Over the years, I've been given many different labels to describe the symptoms, but I've always felt that there was a deeper cause to explain them. Right now, the labels are OCD, Periodic Limb Movement Disorder, and suspected narcolepsy. My current symptoms are severe daytime sleepiness, fatigue, mild cataplexy, occasional hypnogogic hallucinations, multifocal myoclonus when I stop fidgeting, mental fog/concentration problems, intrusive thoughts, and recurring depression. I've had every blood
  23. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  24. The research below, done in Australia shows the dangers of our food supply and why there is an epidemic of diseases with the onset of GMO food both in our meat supply and corn, soy and sugar beets. My mom always wondered why I, and so many of my friends had to have bed rest pregnancies. She use to be a labor and delivery nurse in the 50's and saw miscarriages but mostly early on. Glyphosates were introduced in the 70's and tripled or more in amounts sprayed with GMO foods. Now I have my answer. I met the farmer personally 2 years ago at a lecture. He is 3rd generation and has seen ch
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