Search the Community

Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there with good, bad, or indifferent experiences?? How long did you take it and when did you notice improvement? Thank you all so much...

help, anyone know where to get plasmapheresis/therapeutic apheresis on west coast, my son has been in severe flair for three years, past year has been life threatening for him and us, he is in critical condition and three dr's have rec plasmaphersis but cant find a dr that can order it and where. Stanford wont help. all I know of is dr L and dr B on east coast... anyone know?

Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten worse. She developed a sore throat,We tested for strep and it was negative) has been very weak, unable to stand for more than a few minutes, difficulty with walking, now anxiety, fear, bad thoughts, insomnia starting which for the most part has been handled due to dietary changes and supplements. I have a call in to the neurologist but need advice from others that have gone through this. Is it expected to have exacerbation of all previous symptoms before the healing begins from the antibiotic or is this a bad reaction to this antibiotic. I have seen that it may be better to use Augmentin or Amoxicillin. as a first line. Any suggestions or if anyone has used a Doctor in San Diego that they would recommend I would appreciate any input. Thank you

Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms. In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS. Has anyone familiar with PANDAS found any other triggers, infetions or viruses, besides strep?

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.

Hello, I live in Nova Scotia Canada & my 11-year-old son is scheduled for a tonsillectomy in September and I was wondering if anyone knew of a physician recommended ABX treatment protocol for pre & post surgery? My son has been dx with PANS 5 years ago and we are hoping that the surgery can help reduce the frequency of flares. The ENT plans on giving him IV ABX during surgery along with a 2 week supply of ABX to take after the surgery. I remember reading something about a specific ABX protocol to follow before and after surgery but can't seem to track down that information now. My son takes prophylactic ABX regularly but I was wondering if he should be bumped up to a treatment dose 10 days before the surgery as well. Any information you can provide would be helpful. Thanks.

I just want to know if anyone else's child has these weird triggers. Please note my son has Lyme and PANS, and pretty much his only symptoms are severe motor/vocal tics. My son's tics are triggered sometimes by certain words/ideas (feet related, insect related, bodily functions, 'gross' things), the sounds of people coughing/sneezing/blowing nose, the sight of the above mentioned things (can't look at feet, bugs, etc). They *might* make him feel anxious, but what happens is that he has a big tic or a series of tics. For example, yesterday I asked him not to "get underfoot" when he was in the kitchen. B/c of the word 'foot', he had of series of tics - a couple of kicks, swearing, yelping. This happens EVERY time he sees something he "doesn't like". Driving by a billboard advertising a pedicure - tics. Blowing my nose - tics. Joking around and he drools while laughing - tics. A fly on the porch - tics. Learning the digestive system at school - lots of tics. The neuro that we see says it's like a psychological thing. The psychiatrist who assessed him couldn't categorize it into anything; she said 'unspecified anxiety disorder'. Almost a phobia, but not really a full on phobia b/c he can control the tics better when he's at school. Is there something he is lacking? a supplement he should be taking? He's on abx (azith and herbal) and he takes magnesium. I was thinking about trying niacinamide as I've been reading about how it's calming and can also help tics. Any suggestions? Thanks for reading.

Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.

What dosages of steroids and what kind have you found helpful. Seems like a good dose to bring down inflammation well and chill the immune response but not suppress too much would help. Two year scary violent, OCD, tics, fears flair not responding to anything, then I recently tried 800 mg ibuprophan and violence gone within 10 hours, amazing. But feathering on edge, every time we have tried to kill any pathogens he would just get more scary violent. Then my husband brought home cold virus and my son went homacidal, biting himself and us, self abuse bad etc. can't tolerate phenol herbs last few years, so thinking time to try steroids but last time we did 21 day taper starting at 20 mg he was so shaking and jittery feeling from that high dose then he caught a bad cold for six weeks, but that was first time he got cold symptoms in years, 2007 had a virus of some sort, got meningitis and hasn't had fever or cold symptoms since. It might have been myco in 2007 said Stanford immun, his igg is still very high. So what dosage and type of steroid and for how long has worked well.

I wondered if I could get some input on some odd EBV results we just got back. While the VCA results were normal (IgG and IgM), the EBV nuclear AG (EBNA) was elevated. I should probably also add that ASO and ADB were also high at 300 and 500 respectively. But I understand these results. In terms of history, there was an abrupt flare up in October after a likely strep infection (fever and sore throat) 3 weeks earlier. Antibiotic and anti inflammatory treatment commenced immediately and symptoms remitted. Both medications have been continued because high anxiety and fatigue still remain, though high functioning (academic, social and emotional) has been restored. Another possible piece of the puzzle is a suspected tick bite back in August that was treated with two weeks of doxycycline. No symptoms developed prior to the likely strep infection in late September. Also, a definite case of Lyme and and Bartonella was treated three years ago and all symptoms remitted. Thanks in advance for your thoughts.

Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have. My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc. A quick background - DS has never had strep throat. After tic onset in September 2013, he was positive on a throat swab for strep in October 2013, but no other symptoms. He was put on amoxicillin for 6 months. He had flares of symptoms over the winter, subsequent throat swabs were always negative. He did have the ASO and antiDNAse tested but I don't know the numbers. Because he didn't test positive for strep again, PANDAS was ruled out by the neurologist. Instead, he was diagnosed with a 'movement disorder' - i.e. tourettes or something. In May 2013 he tested positive for Lyme. Put on Augmentin for 6 weeks, no real changes in symptoms. Then clarithromycin was added, great improvement for a week, then back to previous levels. Did that combo for Sept/Oct/Nov 2014 (+ nystatin in Nov). Dec 2014 started azithromycin (in place of the clarithromycin), very slow improvement over 3 weeks. Tried tiny dose of grapefruit seed extract for yeast over the holidays - immense exacerbation and we stopped everything. He developed a horrendous screaming/swearing vocal tic and became hypersensitive to everything, panic attacks, aversions/phobias. He's better now, still some sensitivities (tics triggered by his sister's noises) and motor/vocal tics (screaming, a little bit of swearing) still there. Have been treating for yeast with nystatin and we are on a half dose of azith while we start the Cowden protocol for Lyme. Now if you've read this far, does it sound like we should consider tonsillectomy? His tonsils appear fine, but I know they can look okay but still not be. What could explain his lack of progress? Yeast? wrong abx? maybe abx don't work for him? (Don't get me wrong, I really like our ND, she's very experienced in treating Lyme and has studied with Dr. J. She's basing some of her recommendation on Dr Klinghardt's treatment of PANDAS. I'm just worried things may not go well with it for DS, but also worried that we're missing something by not doing it....) Thanks for reading

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

This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx

What is the significance of a "not likely" cunningham panel. If the initial flare was over a year ago is it possible that the cunningham changes with time? My son met the clinical criteria for Pans/Panda's 1.5 years ago. Recently had the panel done with no definitive result. Any thoughts?

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.

Need advice about best place if hospitalization needed. Current flare severe. We are trying to manage at home until IVIG. Need a plan B. Also looking for advice on best provider experience for second consultation. We are pleased with our current Pans Provider but want to make sure we didn't miss anything in the testing. Thanks in advance!

Hello all, I just joined the group. My 7 year old son is being tested for the strep strain today by his pediatrician, but I need to find a doctor who will take a PANDAS patient. He local doctor knows nothing about this illness. I have called 2 already and they are not accepting new patients. Any recommendations? Thanks!

Hello friends, This is going to be an unusual thread. I am new to this whole disorder. My child is 7 and I will get my child's lab results on Monday. We are testing for PANDAS and other potential viruses. My question is this... has anyone ever used the Hippocrates Institute in Florida to treat this illness? I have been into the natural medicine/ alternative therapies world for my own autoimmune illness since 2009 and I am very familiar with this retreat/resort, etc. (There are hundreds of youtube videos if you want to research it). I never would have spent the money for me, but since it's my child, it's a whole different ball game. Their testimonials are fantastic!!!! I am entertaining this treatment along with many other options. My concern is his... this would be hard on a 7 year old ... boring and long (3 weeks in a hotel environment, wheatgrass, living foods, educational classes, etc). If I decide to do it, I would have my child bring a DVD player with headset to entertain him while he sits next to me throughout the classes. If any other mom's are considering this treatment, it would be nice to have a child for my son to play with. I have spoken to Brian Clement (the founder) and they will treat children. Anyway.... this is all in the air. I have not even spoken to my husband about it. But just wanted to see if any other families have tried this approach. If we try this, it will be soon. Maybe in the next month or two. I am looking forward to hearing back from you.

We are testing for Strep today. My son is starting to hate needles. Is there anything else I should test him for (like Lyme) at the same time to eliminate the need to come back and draw blood again. He throws a temper tantrum which is not good for all his tics and stress levels. I am new to this. I am reading "Childhood Interrupted". It has been eye-opening. I just realized what the possible situation was last night and I am overwhelmed to say the least. Any referrals or advice is appreciated. Thanks. Heidi

DS is currently taking 500mg a day of NAC for liver support and detox help, as it is a precursor to glutathione. I'm wondering if we should try glutathione (liposomal? suppositories?) instead as he needs detox help. Anyone using either and finding it makes a difference? positive or negative What brand of glutathione is best? thanks!

Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.

I'm not sure how to deal with this situation. For the past few months, DS has had a flare up every month or so. Whether it's related to the Lyme life cycle or parasites, I don't know, maybe it's both? He flares around the full moon, and so people have brought up the possibility of parasites. His tics get more frequent and more 'severe' - i.e. the sequence lasts longer and produces a much larger, full body movement. It lasts about a week. Then he goes back down to regular ticcing (it hasn't yet gone away). He is currently taking augmentin and clarithromycin, and some herbals Biocidin and MC Bab 1, which are partly anti-parasitic but he's only on one drop a day. We do lots of detox. And probiotics, sacc B. I've upped his detox this week but it doesn't seem to have any effect. So if it's parasites growing/reproducing, detox wouldn't help? Should I increase the herbals to two drops? I also don't exactly understand how parasites would cause a flare? Can someone explain to me? I realize with a dysfunctional immune system, the parasites have more of a effect than on a healthy immune system.

I'm not sure how things are going with us.... it's hard to tell if we're making progress or not. Could someone please look over what we're doing and based on your experiences, if it's a good plan? should I just be more patient? Thank you so much! I'll start with when DS was dx'ed with Lyme in May. He was not on any abx, tics were very bad - screaming tic, large movements (punching, kicking), biting himself and things. Did some herbals (Biocidin) but caused a big herx. In mid-July, we started Augmentin (1250mg/day) and things settled down slightly and plateaued - no more screaming but still some biting, and still large movements. In mid-August we added 500mg Biaxin/day. After 10 days, the tics decreased and the first week of September, the tics were 85-90% gone - so good! We were hopeful but the first weekend (Sept 6-7), he woke up one morning and all the tics were back. DD had a cold/cough and soon DS came down with it too. After a week of flaring, things settled down slightly again but he was back to like he was before he started the Biaxin. So mid-Sept, the Biaxin was increased to 1000mg/day because he had a positive reaction to it. However we seemed to have plateaued again, with some flaring this week (full moon?). My understanding is that with treatment, flares start to become less severe. I also hear from some that after adding this or that, all the tics were pretty much gone. I don't know if we're heading in the right direction? We do lots of detox, enzymes for biofilm, arabinogalactan and probiotics for gut, boswellia complex for inflammation. We're waiting on the results from Igenex for the co-infections panel. What am I missing? This is so frustrating! Thanks for any input.

Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak

We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing the Lyme/co, I need to do something else.