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  1. So my diagnosis is autoimmune encephalitis. I was only approved for 5 months of ivig then I lose my insurance because of my age. It's been 5 months and it hasn't helped. It did help the dysautonomia which is believe to be autoimmune but that's about it. My bladder, ocd, and fatigue continue to get worse and I am getting more disabled and frustrated. The only people who will see me locally about ocd are psychiatrists, I recently saw one and he dismissed all my diseases and treated me like a healthy person. His plan was to put me in psychiatric inpatient, detox me off all my sleep medications because they are "sedating", then feed me giant doses of stimulants because "that's how you treat chronic fatigue". He didn't understand that chronic fatigue syndrome is an actual disease, most likely autoimmune, very complex, and stimulants DON'T HELP, and the most important factor of this disease is getting sleep. He told me that it didn't matter if I didn't sleep, "people can run off of very little sleep", well I can't, my fatigue is intense and deathlike, most days it's hard to get out of bed. Back to the AE, ivig hasn't helped. The ocd continues to get worse and worse. I got botox for my bladder (IC) and it didn't help. I'm being tortured alive by the ocd and bladder stuff and the fatigue keeps me from having any life. Just confused and perplexed I REALLY thought this was going to help everything, I was 100% convinced. It was very hard too, my infusions were 2 days in a row, 8 hours long, and twice a month because the doctors were scared of side effects and NO LOCAL DOCTOR WOULD HELP so they slowed my infusion rate a lot. The was extremely difficult because the IC has me getting up constantly to the bathroom and I had ocd the entire time, raging. Don't know what to do. I'm tired of trying things, I'm sick of EVERYTHING, I've tried things for 12 years, and nothing helps except my sleep medication, I'm sick of it all; some of my friends just quit trying stuff all together but I can't because of the ocd and bladder.
  2. So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication I've ever taken. We saw an: immunologist, and rheumatologist and they refused to take on my case. Then I was referred to 2 different neuro's and they both refused to see me. They all say they've never heard of AE and can't help and all seem scared and worried. I contacted doctors at nyu and they don't know anyone in the south except duke which is 9 hours away. I contact AE alliance and they said there's nobody in my area. Insurance will only do LOCAL IVIG AT LOCAL HOSPITAL. My bladder and ocd are getting worse, they feed off of each other. My mind is now telling me that all these things are bad there's a huge list of things I can't do according to ocd so it leaves me with essentially nothing to do. I feel like I can't go on even another 6 months to try treatment, it's just that bad. Bladder keeps me from having any enjoyment or sleep or rest in life. Insurance has denied botox treatment and I've tried everything else for IC. OCD latches onto everything I enjoy and tries to destroy it, I can't even watch t.v. or movies so there's nothign I can do but sit in a chair all day and lie in bed, can't listen to music either, it's out of control. Have therapy helped anyone? My psychologist is great but nothing has helped with ocd in past 5 years that we've tried.
  3. For our DS, we are considering IVIG and looking for Doctors who will be willling to prescribe this. We are in the Northern VA area. Any advice/recommendations will be much appreciated.
  4. My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems to be working for that. With the Lyme under control I think the PANDAS is on its way out. This has been a long road, and I don't know if we are at the end of it or not, but it looks like we are at least seeing the light at the end of the tunnel!! Never give up. You never know what is around the next corner.
  5. I really did not understand all the symptoms of Rhumatic fever until I read these 2 research articles. My son has trouble with tremors and I now understand why voluntary momements can make it worse. The second article talks about the snips of inflammation. When I ran my son's 23 and me results the Livewello site these snips showed up as homozygous. My son will be having his 3rd LD IVIG treatment this next week. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002660/ http://www.annalspc.com/article.asp?issn=0974-2069;year=2011;volume=4;issue=1;spage=13;epage=21;aulast=Guilherme
  6. HI Everyone, I wanted to share something that I believe has really helped my teenage son. During a flare he gets intrusive thoughts (and in a non-functioning fog), can't sleep, urinates frequently and has one tic. Out of a flare, he doesn't have these symptoms. We just finished IVIG about 8 weeks ago (and he had a 2 week flare in there). . Motrin and Tylenol (and to some extent the one time with did prednisone) don't seem to help during a flare ... I think those antibodies have reared their ugly heads and it takes 2-4 weeks to go down. However......good news and want to share it with you all However, we have always, always given fish oil but primarily an EPA heavy Nordic Natural fish oil. About 3-4 weeks ago, I switched to Nordic Naturals DHA heavy formulation based on this article (daily about 1.2 grams of DHA and .3 of EPA). I think there were a couple of times he was going to flare... and it felt like the DHA stopped the inflammation cold in its tracks!) Curious to hear if any of you had experience. I have a pandas doc who says that dha has been know to manage the inflammation in certain illnesses. Here is the article that initially got me thinking...it is basic, but I would say it has been a winner in our arsenal and wanted to share it with you all.... Of course this could be IVIG success to date (and who knows a big back regression may be forthcoming, but I am still thinking that DHA is a big find for us...Note it is the amount of DHA and that it is a higher ratio than EPA (3-1 vs. 1-3). Something about what it does with macrophages seems to strike a bell. I believe my son is more PANDAS vs. PANS. Thanks, Califamily Scientists show how DHA resolves inflammation Date: July 1, 2013 Source: Federation of American Societies for Experimental Biology Summary: Chronic inflammation is a major factor in problems from arthritis to cardiovascular disease, and DHA is known to help. New research in The FASEB Journal, explains why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Researchers found that macrophages use DHA to produce "maresins," which are the "switch" that turns inflammation off and switches on resolution. The FASEB Journal, helps explain why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Specifically, researchers found that macrophages (a type of white blood cell) use DHA to produce "maresins," which serve as the "switch" that turns inflammation off and switches on resolution. "We hope that the results from this study will enable investigators to test the relevance of the maresin pathway in human disease," said Charles N. Serhan, Ph.D., a researcher involved in the work from the Brigham & Women's Hospital and Harvard Medical School in Boston, Mass. "Moreover, we hope to better understand resolution biology and its potential pharmacology so that we can enhance our ability to control unwanted inflammation and improve the quality of life." To make this discovery, Serhan and colleagues deconstructed the biosynthetic pathway for maresin biosynthesis and found that human macrophages are responsible for converting DHA to the novel epoxide intermediate "13S, 14S-epoxy-maresin." Then, they learned how to synthesize the molecule and found that maresins caused macrophages to change their "type" so they no longer caused inflammation (switching them from M1 to M2 phenotypes). "We've known for a long time that DHA tames inflammation, now, we learn exactly how DHA works: via new substances called maresins," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "We encounter inflammation almost daily, but our body has ways of turning it off. This is an important step toward understanding exactly this happens. You're likely to be hearing a lot more about maresins if, or when, new therapies arise from this discovery."
  7. This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to getting a Penicillin shot every 3 weeks and he is also going to be getting monthly low dosage IVIG trestments. Our insurance has approved of the IVIG. The IVIG treatment will be done inpatient this weekend. Our cardiologist is in charge of the treatment. He is aware that my son has a low IGA. I can only think of a couple of times when this rheumatic fever might have happened. This problem is also caused by strep. If it does not get cleared up, does the strep hibernate in the body and caused the antibodies to build up? With this type of situation, I could see how this would affect blood pressure and heart rate. I am excited that my son is going to be doing the IVIG but I'm hoping it won't make his symptoms worse. I have explained to him that this is a possibility and that it may take several treatments before any progress is made. I am going to contine to work on his diet and his cardiologist is also interested in see his 23 and me test results. He also told me to go ahead and try P5P with my son at night to see if it will help with sleep issues. Since this strep infection started, he is having trouble getting to sleep.
  8. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  9. My ds11 was diagnosed with PANDAS last december by dr.L. He has had anxiety and learning disabilities since 3. And when we started SSRI (at 5) we saw ADHD. We did IVIG this november when he started hurting himself in school (academics and social situations-a trigger). Since IVIG he is not able to go to school and its very hard for him to leave the house (raging, crying, getting "stuck"). Dr. L recommends PEX (she did not order cunningham test at time of diagnosis, his Lyme is negative, but high mycoplasma). We will be paying out of pocket ($27,000). Does anyone have a similar story where PEX worked (alleviated the most egregious behaviors)?
  10. I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments. My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything? I also want to know if either of these treatments can be done while your child is on an antibiotic because of a bacteral infection. I know some have had some success with these treatments and that it may take several treatments before results are seen. Just need to hear your good or bad experiences.
  11. Hello all, it has been a long time since I have visited this forum. We have been very blessed. After 7 years of battling tics and PANDAS with several IVIG doses, Thomas "grew out of it" when he started having signs of oncoming puberty. Many thanks to those on this forum that helped me through one of the darkest periods of my life. Now, I am helping a dear friend whose daughter has been diagnosed with PANDAS primarily with OCD symptoms. She is getting better after PEX and 2 doses of IVIG. The first was in Chicago and the second in our local hospital. Here is the problem. This family was just presented with an outrageous bill. $88,000 for 2 outpatient days of 6 hours each to get IVIG. Our bills never went over 5 K for each of our IVIG treatments (and we were hoppin mad about that !) Has anyone had this experience ? Have you been able to fight it ? I told them at first it was a typo. But the family went through several meetings with the financial department of the hospital who claim it is correct. The bill reads that it cost the hospital 54K just to order the drug. !! How can that be possible ? Wouldn't a hospital make you sign a form that said you were aware of the cost before you had the treatment ? Any advice or insight would be appreciated ! Thank you
  12. Hi Just wondering for those in the last 3 years -- how often have you done IVIG and at what dose? How old was your child and what was your success? My son appeared to be responding but at 4 weeks he had an exacerbation. I know Dr. K usually thinks 12 weeks but curious your perspective Thanks!
  13. What causes low IgA? My son has had his checked several times. He is not deficient. His last test showed he was at 56 and the range is 71-263. I've also been told when someone has low IgA that IVIG may not be an option. What is the reasoning behind this. I've tried to find research but I'm coming up empty handed. In all his testing, his IgA has never shown to be in a normal range. My son's cardiologist is considering doing a low dosage of IVIG to see if it would help his low blood pressure and get rid of the antibodies. However, he has held off on this treatment because the Bixan seems to be helping with the low blood pressure but not the rest of his symptoms.. However, I'm wondering how we are going to get rid of the antibodies in the brain. Is IVIG and PEX the only way to do this when your kid has been sick for over 3 years? Is a low dosage of IVIG better to start with when your kid has a low IgA? I am getting ready to go see the cardiologist this next week. Our cardiologist has already got approval from our insurance for the treatment. Not sure if we should go for it. Any reasearch or opinions would be helpful at this time. I am reading Buhner's books and really want to pursue the herbal route first. Has anyone done IVIG with herbal supplements?
  14. Our dd age 5 1/2 is two weeks post ivig. We have not been one of the people who saw an immediate improvement. In fact, we saw a big flare in PANS symptoms about 2-3 days post ivig. I'm glad that we we had heard from other parents ( not doctors) that this could happen. Based on how bad the flare was, I was terrified, but she recovered very very quickly given the severity of the symptoms. She is doing ok now, but not sleeping at all. We have had our fare share of sleep problems like most of you probably have too. Usually though the sleep problems occur in a flare and now that her day time symptoms seem very much under control, yet she's still not sleeping?! I am wondering if anyone else saw a problem with sleep post ivig? Also, any other ideas to help with sleep? We use theanine, melatonin, and magnesium. As you know the sleep thing is so important, critical, and vital for these kids (and our family). Any thoughts would be welcome. Thanks!
  15. Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy). Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information. Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from LP yet, I think the results will be helpful if we can identify which auto-immune disease it is. We have definitive proof of neuro-inflammation. However, I'm getting sicker and sicker, ocd and psych problems including depression are getting worse and worse. I don't have it in me to put up a fight. Insurance has denied the first appeal very quickly. Said they will only cover for: ITP and PID. We have no other path to take, literally tried everything except this, and we trust Dr. C....... We can show that I've tried everything else possible, it's been over 10 years of going to mayo, shands, surgeries, many psychiatrists, alternative therapies, you name it - I've done it.......... don't know if this will hold any weight, but I have no other options. Thanks.
  16. My ivig was initially approved then cancelled last minute. The first appeal was denied. My neurologist and an RN are heading up everything, providing all the necessary documentation, writing the letters, and my neuro plans on having a peer to peer phone review. He provided all their research including latest studies. BUT 2 days ago I got a letter from insurance stating that they will not approve unless it's : PID or ITP - those are the ONLY 2 disorders they will approve for according to this letter. We will now have to work on 2nd appeal. Some lady from insurance said maybe I can take a different path, but I've literally done everything I can do and tried everything I can try....... this is it for me. And I'm completely exhausted and spent and have nothing left to keep fighting and I have a bad feeling that I'll never get well. There is concrete evidence of inflammation in my brain and body, though that does not seem like enough. Labs clearly showed autoimmunity (hyperactive immune system, highly elevated pro-inflammatory cytokines, Low NK cell functioning and NK cell count, abnormally low T cells, consistently rising and elevated platelet levels, then the abnormal CT and PET scans)...... we are waiting for LP results. Autoimmune encephalitis is written through-out my records. They lastly mention that they've never seen such an abnormal PET scan in a 27 yr old female. So much so that the radiologist paged my neuro right away highly concerned and wanting to know my background. With all this evidence, it does not seem like insurance will cover it, b/c the simply do not want to pay for it. Frustrated. Doubled up on all my sleep meds and not sleeping, it's been days and days. It seems like I've become completely tolerant to klonopin and they are reluctant to prescribe xanax any more. I have doubled, tripled, my klonopin, and it only seems to get me in a relaxed state, odd b/c just 2 weeks ago in NYC I was sleeping okay, I would be so tired I'd just collapse on the hospital bed into a deep sleep, this is not the case now. I've seen many sleep specialists, tried just about everything out there including xyrem which only made me high. The problem is my brain b/c one of my first symptoms was insomnia. It is sending me into bad places psychologically and I can't do anything but lay in bed and get on computer a bit. Everything also makes me sedated so if I add on more things, I'll be sedated and unable to function the next day, when this happens my ocd goes out of control. A lot of it is just being so disabled by fatigue. Sigh.....................
  17. anyone know of any research on IVIG dosages for PANS/autoimmune?
  18. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  19. Hello, we just did our first HD IVIG. Our main issues are tics and intrusive thoughts. For those who have done IVIG, if it is going to help, how long before you see any results? Especially interested in knowing if you've seen help in reduction or elimination of tics. Thank you!!
  20. Hello. My dd is finally scheduled for her first IVIG this week after 11 months of waiting. As we near the date, her symptoms are exploding - tics and intrusive thoughts. She doesn't seem to be sick so I don't think she has caught anything. Best I can guess is that she is just super anxious about IVIG. I was wondering if anyone else has seen this in their kids before? Thanks in advance -
  21. Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when we returned, and she noted how different he appeared during the visit--on the floor, in constant motion, talking non-stop, and repeating things. she suggested counseling, as we have had many serious family stressors in the last year. i started looking online at information on tourettes and came across the pandas/pans stuff. he fit nearly every criteria. i also noticed dilated pupils were a symptom, which I remember seeing for months but didn't think much of it. same with urinary incontinence. he had about 6 daytime and nighttime episodes in 5 weeks time. he was out of school, so didn't notice much with writing. just that when I tried to sit down with him to do some schoolwork they sent home with kids to do for the summer, he refused and/or had a tantrum about not wanting to do the exercises. i scheduled an appt with dr k, who would be unavailable for one month. every day was/has been a nightmare and waiting to do nothing felt awful. i scheduled a ph consult with dr t who said he is "textbook" pandas. his bloodwork came back, and even though antidnase b titers were considered high, he thought pneumococcus was the triggering agent. he is on augmentin and biaxin right now. we saw a dr locally who refused to diagnose him with pandas (he won't acknowledge pans) since his strep titers were normal with a second round of bloodwork. we see dr k tomorrow. as i think back to his last illness that he had, it was in march, over spring break. he was sick with fever for 6 days. other symptoms were a cough so bad it often made him gag/vomit, but it was nonproductive. dr thought it was viral. 2 weeks later I noticed differences in my son, and that's when i began emailing his teacher to ask if she'd noticed differences. i mainly noticed tics, like blinking and facial grimacing, and hyperactivity. she said she, too, noticed but didn't think it was too bothersome. when i picked him up from school, he was so angry, nearly every day, that i thought something had to be happening in school. again, the teacher confirmed nothing was happening, he seemed ok, although she could no longer put him with certain students to do work like she used to, and that he had troubles following directions, standing in line, and staying on the carpet during reading. this is from a teacher who, up to this point, said she wished she had 18 children like him in her class! my son even said he felt like something was "wrong" with him. then I recalled a class field trip at the end of May I went on with him, and came home and told my husband that something was not right. he was very obsessed over the school bus and couldn't participate in learning activities. i began looking up adhd things. but as i said before, it's as if he could qualify for 5-6 dsm-iv diagnoses in one month's time! i've read some things here and feel very scared. it seems like something that never ends, or even gets better. i'm sure we'll be up against a decision on whether to try ivig or not. i've made an appt with a homeopath to begin treating, but i'm so scared to abandon traditional medical treatments. did i mention i have a healthcare background and am a scientist?? i really want to get at the core issue of the problem. i know everyone on here wants that too for their children. i'm just unsure how to go about it. i've never seen him so debilitated and i'm worried the next episode will keep him out of school. in fact i'm not sure how he'll fare with this upcoming school year, as he is now. he's on day 8 of abx, dr t prescribed 10 days. i'm wondering about recovery, what that looks like. his mood seemed significantly better to me two days ago. yesterday was a "good" day too. he didn't get angry as much or as intensely. but today i had a doctor's appointment and he was haywire--screaming "uuuhhh!" because i asked him to sit down, squeezing me out of anger (while I'm holding my 9-mo old), unable to be still, talking nonstop to the provider who was trying to talk to me, grabbing exam gloves by the handful out of the box, licking objects, etc. I don't understand....I thought we were on the mend. Can anyone share what to expect with recovery? are there good days then bad days, or is it different? same with recovery after ivig? how many rounds do kids typically need? I've read with younger kids recovery might be quicker/easier...is this correct? and what if the offending trigger is viral, not bacterial? what is the course of action then? do kids get better? and from what i understand, bloodwork is neither confirmatory nor disproving, so why the emphasis on it? does it really offer much useful information? maybe i'm misunderstanding this whole beast... i have many questions but will post later. i'm glad to have found a place to put ideas and questions out there.
  22. Hello all, I am fairly new here (but unfortunately not new to PANDAS) Tomorrow we will be giving my 9 y.o. (ADHD, ODD, OCD) son his first IVIG and I need a little hand holding/moral support. I am so nervous and would love to hear any success stories out there. Also, we have him on lots of supplements as well as 2 abx (Azithromycin and a Cephalasporin). I understand that a common side effect is naseau and vomiting. I am assuming that for the next several days we should hold off on supplements (even the ones that help with his huge YEAST problem from the abx??) Any thoughts here? Also what about the antibiotics? I assume to continue. Dr. Bouboulis says keep him on them, so we probably will do so. Any other advice? Do most of you who have done IVIG experience some regression before things get better? We have been through so much and have lots of PTSD concerning our son, so the better prepared we are, the better we can support him! Thanks for any help!!!!! Alisa
  23. I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvania found the problem after NYU Medical Center contacted him for help. IVIG and plasmapherisis and steroids saved her life just before she was totally lost. I love to read and never have enough time to but I accidentally stumbled on this and read it in less than 2 days. I am so happy to know that there are doctors out there who are recognizing the brain inflammation/autoimmune aspects. As she points out in her book, how many people have been committed to psychiatric institutions or written off as 'mental' or 'autistic', when it is actually brain inflammation? So glad I stumbled onto this book!!!!
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