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Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyone tried it for their OCD/PANS? Treatment of anxiety disorders with minocycline: http://www.google.com/patents/WO2008104734A1?cl=en

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 know where to start or how to receive treatment. I need help and any advice would be appreciated. My parents are very conservative with money, so I do not have many options as I still live with them. Thank you for your help.

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!

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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

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

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 OCD increased back to the high level like that in summer. So his school psychiatrist wanted to increase his medicine for OCD because he has been very late for school due to OCD during morning routine. His current medicine for OCD is zoloft 200mg. He is also taking zyprexa for his paranoia. Personally, we do not want to add any medicine. He has been seeing Dr. Greenblatt, an integrative psychiatrist, who give him several supplements. His paranoia has been reduced to minimal and zyprexa reduced from 30mg to 10mg in two years since he started taking the supplements. A recent Kryptopyrrole test indicated he had elevated pyroluria and Dr. Greenblatt has just prescribed him with Zinc and Vit B6, hopefully to reduce his anxiety. We would like to see how the new supplements work before changing his medicine. Anyway, his school psychiatrist proposed three options for us to consider for treating his OCD 1. to increase zyprexa from 10mg to 15mg in order to boost up the effect of zoloft. 2. to add another SSRI, such as Prozac, on top of 200mg zoloft 3. to add another tricyclic , such as Anafranil, on top of 200mg zoloft. Any feedback for the medicine options and any suggestion relating to what happened to my son's OCD are greatly appreciated Thanks for your time Louisa

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

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 cause neurological symptoms. Do some research on Histadelia kids. Describes my son to a T. Work with a Functional MD or ND who understands the methylation cycle and other contributing SNPs. I would suggest getting a Blood Histamine test. We just had one for our son by Dunwoody labs. It included histamine, DAO and Zonulin (zonulin was optimal so not a Leaky Gut problem). We ran genes through 23andme a couple years ago which is helpful information (still requires research, trial and error). Dr. Amy Yasko (google her name) has an online forum and free online books which are very helpful regarding gene errors and the methylation cycle. If our histamines are too high there are some reasons behind that which can be supported by understanding your methylation cycle. You can read up on Histamines and how they effect us. Some people have issues because of low histamines and others because too high. Here are two good links. http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm http://www.drkaslow.com/html/histadelia.html

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!

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

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 sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends... That was really scary, because in general she is very kind and loving So, I so it thought that Pandas came back, so we went to see a doctor. My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas. I don't know what to think. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. But I really scared to go to psychiatrist, I am afraid that doctor will make a wrong diagnosis or will put my daughter on very strong medicine. For now I am giving my daughter vitamin B-complex, glycine, probiotics and chamomile. Also she doesn't eat sugar and caffeine. Sometimes my daughter feels normal for couple of days and then she starts having bad thoughts again. She is having irritability sometimes, and starting thinking about losing weight, and she is not fat. I Will appreciate any comments. Thank you.

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,” started making a repetitive vocalization that sounded like a faint, high-pitched tone. Over the course of a week or so, it morphed into a very loud involuntary squeaking noise that, at it’s worst, could occur multiple times in a minute. We went to see our family doctor, who examined “A” and reassured us that childhood tics were a somewhat normal occurrence and that “A” would probably grow out of them. We went to see a pediatric neurologist who talked to us about transient tic disorders (and the long-term possibility of Tourette Syndrome) and sent us on our way. Over the past year since the first tic appeared, there have been several cycles of tics being more and then less prevalent. They always appeared to be vocal in nature and included sounds such as humming, coughing, sniffing, and exhaling loudly. Sometimes they were confined to a specific time of day, like at meals, or at bedtime when we were reading books. Other times they waxed and waned throughout the day with no predictable pattern. We did our best to not call attention to them and to try to reduce “A”s anxiety when they occurred. In October we introduced an air filter in his room and observed a (perhaps coincidental?) reduction in the frequency of his vocal tics. In fact, for a period of time from about Thanksgiving until mid-January, we did not observe any tics and began to wonder if perhaps he had “outgrown” the tics as his doctor had suggested could happen sometimes. Then, on January 20 (2016) he peed his pants at school during an engrossing activity. This had never happened before. Over the course of the next several days, “A” continued to pee in his pants, often several times a day. We took him to the doctor to test for a UTI, which came back negative. We have since deduced that the peeing happens when he involuntarily tightens his abdomen - perhaps a new motor tic. Around this same time, “A” started having trouble sleeping again. He asked for Mom or Dad to lie next to him as he was falling asleep, and on multiple occasions he has awoken in the middle of the night and asked for one of us to sleep in his bed with him. Once, when I (Mom) was lying next to him in bed as he was falling asleep, he mentioned that he saw “red Santa Clauses” and “red buses” all over his wall. He asked if I could see them, too, and then (possibly covering up) said that he was “only joking.” He has started avoiding certain foods again, saying that they “taste funny” or that they’re “too sweet.” This includes foods that he normally consumes with great pleasure, such as granola bars, juice, peanut butter and jelly sandwich, and toast with honey. He started making funny twisting movements with his body, often having to stop in the middle of doing something to bend over and hold a counter or something for balance. He juts his hip out to the side or wiggles his torso. When reading books to him, he twists his head and torso to the side or sometimes puts his ear to his shoulder in a rapid fashion as if a fly flew into his ear. He fidgets his fingers as though he’s typing something. New vocal tics appeared, including a shouting tic (makes a brief shouting noise at random times throughout the day), and a change in volume mid-sentence. He also has been grimacing and putting his chin to his chest or tipping his head backwards, which can make his voice sound funny or distorted if he’s mid-sentence when it happens. He also talks occasionally in “baby talk” or gibberish, and sometimes loses his train of thought or appears to stutter slightly. His teachers have expressed concern that he is “losing his ability to speak” because they can only understand him part of the time. He received early intervention speech therapy from ages 2-4, but made such great progress that they stopped services around his 4th birthday (just before the first vocal tic appeared). His teachers recently asked if we should consider contacting the speech therapist for some “refresher” services, given the regressions they have observed in his speech. He has been very tired and has dark circles under his eyes. His teachers note that he seems very tired at school, too. He is sometimes listless at home and asks over and over again “what can I do?” When I give suggestions for activities that he usually likes to do, he rejects them. He has been choosing activities that seem odd or destructive, such as sharpening crayons or pencils over and over again until they are little nubbins, mushing things into crumbs (e.g., food), scribbling roughly on a piece of paper instead of making a careful drawing (which he usually likes to do), and racing a truck back and forth across the floor and occasionally bashing it into other toys. These types of activities are occasionally part of his normal play, but right now they seem to be the only things he wants to do. Perhaps most concerning of all are the changes in his mood. It feels like a different child has come and replaced our normally inquisitive, focused, and generally good-natured boy. He has had about 4-5 huge tantrums over the past several weeks that have usually resulted in Mom or Dad gently restraining him because he tries to hit or bite. He fights and claws until he wears himself out (sometimes lasting 30-45 minutes), and the tantrums often result in lots of crying. We try to talk to him about what’s going on, to reassure him that we want to help him, to ask him if his tics are hurting his body, to validate how he has a lot of “big feelings” right now and that’s okay. He doesn’t like to talk about any of this, but sometimes validating his feelings makes him cry harder. It’s hard to imagine how scared he must feel about all of these things happening to his body. We went back to the pediatric neurologist last week and he listened to our concerns and watched the video clips we had taken. He did a basic neurological exam (reflexes, balance, etc.) and then proceeded to talk with us about Tourette Syndrome and OCD. It wasn’t a particularly helpful or illuminating visit except for the reassurance that there doesn’t appear to be an underlying life-threatening cause for these developments. We mentioned the possibility of PANDAS with the neurologist and received some pushback. Nonetheless, he made a note to our family doctor to do a strep culture but didn’t think a blood test was necessary. The rapid strep test was yesterday and came back negative. If the longer-term results of the culture come back negative, our next plan is to get a blood test. We are also planning to test for Lyme. We have an appointment in March (earliest available) with a local naturopath who comes highly recommended by our local Lyme Disease support group (even if it’s not Lyme, we think she will be helpful for exploring other issues). Prior to this recent onset of tics, he had two bad colds, which we just assumed were your normal, run-of-the-mill winter colds with a runny nose, coughing, etc. so we didn’t go to the doctor and they seemingly cleared up on their own. One last possibly relevant detail - when he was three, A’s doctor has noted that A’s tonsils are larger than average and we saw an ear/nose/throat specialist at the time. The specialist said that a tonsillectomy might be something to consider in later years so maybe it’s time to revisit that conversation? Questions: How can we help our son? What are the next steps that we should take in trying to get to the bottom of what’s going on? And what types of low-invasive efforts we can try at home (e.g., epsom salt baths) to try to bring him some relief in the short-term? How do you help your young child feel reassured when something like this is happening? What language do you use to talk to him/her about what’s going on? Any other feedback or ideas are welcome. We are distressed and discouraged and looking for any help we can get. ***Thank you for taking the time to read this.***

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 have retinas stretch since she is myopic since young age. But since the appt, I have developed very obsessive thinking of the most worst possible outcome of my kids that my daughter may need eye surgery in the future, maybe retinal detachment and loss of vision etc... I cry a lot and my husband keeps telling me Dr said she is fine for now, but only God knows what will happen in the future... My obsessive thoughts is wearing me out...I feel anxious and keep thinking of the possible worst outcome... I am a Christian, I start keep reciting Bible verses, but seems like my brain doesn't believe what the OD said about my myopic daughter who is fine right now...so I am in anxiety and depression, hardly have energy to teach my kids or eat... I start taking Kirkman multi-vitamin for a month since I am low in Vit D. I also start taking a potent high quality omega 3. And Kirkman L-theanine 200mg at bed time but seems no help.. Thanks, Barbara

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 a severe case of scarlett fever and frequent cases of strep throughout my childhood, like multiple instances a year. Needless to say, PANDAs instantly came to mind, but I can't seem to find any info about how PANDAs affects people in adulthood. All these disorders are all new news to me, and while they explain a lot of my quirkiness, I'd really like to learn more about them and how they affect me, ya know? Any input from you guys would be greatly appreciated. Thanks, bentushar

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 ago the health of my son was much worsening with extreme sound sentivity with ear pain that caused to him psychotic issues like agression,rages ,panick attacks . we went to US and checked him twice for Bartonella and others with dr T but where negatives . All these years we made many lab test that except high strep they didn't shows something else. Was like he was a healthy child but he didn't was! Last winter was in .... He take steroids long term he gain many kilos but the phsych issues remain! So I decided that he made PEX to find some relief ( I heard about that in the last seminar in Italy from dr L) I forgot to tell you that last winter my son was full of stretch marks in his body but I thought that was from the weight.But after the PEX the stretch marks disapeard and also the psych issues with the sound sensitivity ( but OCD and others still remain) Then we come to US and see dr B that says when he show my son " this is from tick bite! this is the initial trigger for PANDAS and the autism like symptoms!!" 3 weeks ago we took the Igenex results and he is positive for Bartonella ! Dr B.suggest combo of 3 abx ( Azithromycin,doxycycline ,Bactrim) but sooooo difficult to take. From the smaller dose make him with old symptoms ( die- off)and I m afraid to proceed ( because of rages ) I try very hard to detox ( Epsom baths,Curcumin, baking soda ,charcoal,ibuprofen....) I need your help please. I ordered already the neutramedix stuff he is also in GFCF diet. Maybe I must have another dr also to help me with detox or another problems ? My son is with problems all his life I want so much to help him now that I found something Thanks in advance for your help and sorry for my English!! PS. I would like also the opinion of rowingmom.She is a guru as many others moms.

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 noticed that his pupils are often very dialated. Much more so than ours in all types of light. Has anyone else experienced that? I thought it might be worth noting in the diet/behavior log. Thanks! This is a fabulous site and has helped us tremendously!

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 they might consider it. Anyone used The Learning Program on their children for various disabilities? Sound therapy? That's in the book too and I think it would benefit my youngest.

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 1:160 High <1:10 Coxsackie B Virus, Type 5 1:160 High <1:10 Coxsackie B Virus, Type 6 1:80 High <1:10 Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600 IgG, Subclass 1 408 Low mg/dL 422 - 1292 M pneumoniae IgG Abs 549 High U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320 Immunoglobulin E Total 3 (LOW END) IU/mL 0 - 100

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 a fever of 107 at the age of 2. My question is, does anyone know if antibiotics could help an adult who possibly has PANDAS untreated? I have tried countless treatments and therapies and medications for my OCD and anorexia and nothing has helped. I feel like things just keep getting worse, and I just want some relief. I remember being totally fine as a child, and the one day waking up and feeling like my world turned upside down and had no idea why I was doing the things I was doing. This happened with the OCD and Anorexia. No previous implications of it, just literally overnight. Does anyone know (or suffer themselves) and are older? Is there anyway to know if it's PANDAS even though I am older now - symptoms never got better over the years, only worse. And of course al ldoctors do is just push this SSRI or that SSRI. I'm worried it's too late in the game to test for anything or possibly treat it. It wasn't ever a known thing when I was younger, and I've even tried to bring it up to doctors now, but I'm just looked at like I have 10 heads. I just want to be okay and recover from these horrible symptoms that didn't plague me for years. If anyone has any words of support or anything they could offer/advice/anything at all - it would be greatly appreciated. I feel like I am trapped in my own body and have been for years. Thanks everyone.

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 94.2 - but doc insists it's because she doesn't eat enough protein. (We've told her REPEATEDLY that dd eats LOTS of protein - but once "eating disorder" is thought of they assume it's all connected to that. Ugh... Fortunately, this illness occurred at the same time I requested some labwork, and the labwork came back positive for mycoP and positive for ASO titer. Sadly, she's been on abx for them, and it doesn't do any good. We went to a psychiatrist who specializes in methylation issues. It's obvious from his office protocol that he leans toward metals issues. (You know what I mean... some LLMD's assume everyone has Lyme until proven otherwise!) The thing is, he did do a provoked metal test and dd DID show high lead and mercury. According to this doc, that is why dd takes abx for strep, myco, etc, etc, and rarely clears it. He says the metals are screwing up her immune system so she is unable to respond correctly to the abx. I've researched a lot of what he's said, and it does seem to make sense. (But doesn't it all at the time when we're desperate and tired?) IF he's right, and getting rid of the metals helps her immune system, then all these weird symptoms of so many other things she has might actually go away. Wouldn't this explain why the PANDAS/PANS kids KEEP getting sick over and over? Something like metals is keeping the immune system screwed up, and that's why there are recurring problems? Antibiotics never bring our dd anywhere close to a baseline - although they can help with extreme fatigue and the kind of intrusive thoughts where she literally grabs her head and screams, "Please make them go away!" But the thoughts are always there, and the anxiety for her makes life not worth living. Another year, and college classes have to be cancelled AGAIN. She truly has no life and nothing to look forward to. She worked her butt off to get a wonderful scholarship, and this disorder has taken it all away. Has anyone tried removing the metals to see if it helps, or are we just barking up another wrong tree?

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!

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 had seen progress with H. Pylori treatment.) Should the whole family be tested? I've had IBS my whole life, and a "pre-ulcer" when I was in my 20's, but no one tested me for anything. Now I'm wondering if it was actually H. Pylori.

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 test imaginable, and they have always come back normal—until now. I had a Cunningham panel done in December with the following results: Dopamine D1: 8000 (normal range: 500-2000) Lysoganglioside: 320 (normal range: 80-320) Tubulin: 4000 (normal range: 250-1000) CaM Kinase II: 114 (normal range: 53-130) They had a shortage of the reagent for D2, so I don’t have those results yet. How do I interpret all of this? The report didn’t say anything. Also, blood work I had in March that tested for inflammatory markers came back normal. Unfortunately, none of the numerous doctors I've seen lately have known what to do about my numbers, and I don’t know what to do anymore, either. After eight years, my symptoms continue to worsen, and I’ve had enough. I had no health issues until a sudden illness at eleven that started with extreme fatigue, which is very suspicious to me. I've been researching on my own, and from what I can decipher, elevated D1 antibodies (which I have) are associated with OCD, Narcolepsy, and PLMD. Can anyone confirm this? Have any of you with PANDAS diagnoses also had Narcolepsy or other sleep disorders? Although I’m almost cured of OCD compulsions thanks to ERP and CBT, my other symptoms are debilitating, and I don’t want to be sick for the rest of my life. Do you know if any of the treatments for PANS or PANDAS can help with the fatigue and narcolepsy? And is there any point in antibiotics or IVIG after having this for so long, or is the damage to my brain likely permanent? Any words of advice you have are very much welcome and appreciated. I know you’re not doctors, but I’d be curious to hear about any of your similar experiences and anything that has helped. Thanks!

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 symptoms. It was amazing!!! So his conversational speech & socialness did go awa when we stopped the Cefdinir. He has a bit of a yeast Candida battle going on since he was a baby & so we could not keep him on long term antibiotics. I give him Sacchamoyers Ballardii & FiveLac & Nystatin to help that battle and that does work BUT it is not enough when he is on antibiotics. and I am nervous about long term antibiotics with long term Fluconizole/Diflucan. IS that a true concern? The Candida problem is reason we are thinking very seriously about the Oral IG because if he had to be on antibiotics for a year or two I think it is not recommended to be on Diflucan that long. I saw a post from doctor McChandless saying ORAL IG works well for some kids. Are there any families out there that have had experience with Oral IG, Please let me know!!! Thanks,