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Found 29 results

  1. Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people. My psychiatrist is referring me but not sure if I'll be accepted or not. I wanted to know if his treatment is individualized per case by case basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very faulty immune system), I also have a CFS friend who did IVIG and was bed-bound unable to even lift her head for 6 months. I was just wanting to know if he would be able to look at everything as a whole when deciding on treatment and if he would be investigatory into my very complex and debilitating case? The new theory coming out about CFS is that the entire vagus nerve is infected (they found this with a patient who passed in the UK), I just really need someone who will try and figure out what the heck is killing me and has been for the past 10 years. Also, I've never seen a good neurologist (only one local who was terrible) so I'm hoping for sleep investigation as I can't hardly sleep at all now and haven't for 5+ years. (I take melatonin, zyprexa, zoloft, loads of klonopin, pro-gabba, and magnesium every night with little benefit or help). I've tried pretty much everything for sleep including the very expensive xyrem only fda approved for narcolepsy. Thanks for any info as related to Dr. Souhel Najjar (seems like a fantastic physician!)
  2. wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but we where on zithro for 6 months. Dr L does not think its Lyme said its the strep thanks
  3. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  4. I should start by saying that is an amazing site. I always feel that I am alone on my anti-pharmaceutical island. My 6 year old was recently diagnosed with Tourettes. I feel like I was left dangling by the pediatrician without any directions on how to proceed. I have an appointment with our nurse practitioner as I want to do blood work to see if there any nutritional deficiencies. Without guidance from a doctor (we dont have a doctor as I didnt vaccinate my children), I need help. What type of nutritional deficiencies should I make sure to test for? Are there any other tests I should request? Bacteria? Can you test for Panada? Allergy testing obviously but anything specific...? Thanks!!!!
  5. Hi guys, I'm very sorry to keep going on. Yes, there is a positive response to the antibiotics, but my step father is very cynical and demeaning and my mum is rather reluctant to fund treatment in the states, grasping at other less likely and unhelpful explanations. Psychological therapy hasn't helped at all through the years, my cognition is in dire straits which has impacted education and occupational opportunity and left me in a state of pure social isolation for the last 8 years! I'm very uncertain of my future now. I have been marginalised and ostracised by my peers, and coping alone with no support at all - having to pick myself every time - has been a mind bending experience. This post is just to ask at opportunities to raise funds, or if anyone could provide any pointers. These last 8 years have really been a humiliating experience. :/ I don't think I have the strength to go much longer. Thank you for taking the time to read, I only wish I had a more understanding support network in reality...
  6. 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
  7. 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.
  8. I found a couple of articles that might be of some interest to someone. Most of you know my son was dignosied with Postural Orthostatic Tachycradia Syndrome and his symptoms keep getting more severe after infections and viruses. Currently my son is doing plasmapharisis twice a week on an out patient basis. The treatment is not causing him to be worse or increasing any of his symptoms. I am beginning to see small changes. He is gaining some strength and he is able to do some physical therapy exercises. His tremors are less. Our doctor started him on some predisone this last week. His blood pressures have also improved. Our doctor has told us this could still be a very long haul for full recovery. Research does seem to be catching up to us. My son's last testing numbers on Cam Kinese was 243. The normal range for his age is 95 or below. http://circres.ahajournals.org/content/110/12/1661.full http://www.bioline.org.br/request?pe14052
  9. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  10. I have went back and looked at many post on Lyme disease. So maybe I missed something and you guys can help me out. I went back and looked at all of my son's test results since he was sick in December 2010. He has been checked several times for Lyme and coinfections at different labs. After his main illness began, he was tested at 2 months, 6 months, and 9 months later for lyme and coinfections. All testing was negative and was done by different labs. I know that Lyme testing is not the most accurate from any lab even from Ignex. Is there a Lab that runs an accurate test to check for late stage lyme? I'm talking 4-5 years late. Or is this an impossible test to find?
  11. I have read some articles about this syndrome but I am not getting a clear picture of what the symptoms actually are? What symptoms does you child have from this syndrome? My son has not been checked for this but the more I read, I am wondering if this could be part of his problem. Is there treatment for this?
  12. 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,
  13. Thought I would share what I found. I did not know that this part of the study had been released. After reading the research, I understand more about my son's condition. My son will be having another IVIG treatment this coming weekend. He was also given another shot of high dosage penicillin this past week. I am also starting him on a gluten free diet after the next IVIG treatment. I hoping this will give his immune system an extra boost. My ds is ready to comitt to the diet and I have gathered the supplies and recipes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/
  14. I'm just wondering if anyone else is using Taurine and has seen improvements in their childs symptoms. I have been reading and seeing some Doctor's protocals online for treatment of PANS/PANDAS. Taurine is listed and being used as a supplement. Taurine supposedly deregulates CaM Kinese and will help raise GABA levels. I started using a very low dosage with my son this last week. Is anyone else using Taurine and seeing good results?
  15. This is the second time this year that my son has had a strep infection while on an antibiotic. Is this normal? Since this year, he has also started testing positive on a rapid strep test. In the past, rapid streps always showed up negative. The first time this happened, he was on arzithromycin and this last time, he was on Bixan. He is on these antioboitics because of Mycoplasma P. Is my son going to have to go on a stronger antibiotic to get rid of the Mycoplasma P and to keep from getting a strep infection. My son does not go out in the public, he's home bound. So why is he catching strep. No one else is sick in the household. Just frustrated and need to understand why this might be happening.
  16. I finally got my son's 23 and me test results back. First of all, thanks LLM for your post for 23 and ME. This has helped so much. The genes that showed up really do influence the symptoms that my son is having. I will be sharing these results with the cardiologist because he will be open to this. He will be more than willing to do testing to check for sulfite and ammonia levels in the body. My son did not have any SHMT or ACAT, However, he did have 4 hetrozygous CBS genes show up and 4 Hetrozygous MTHFR genes. As for Homzygous genes, this showed up in MAO AR297R, MTRR A66G, NOS 3, CETP,MEFV,TNF, and RAD 50. I am ready to switch off some of these genes to see if I can get rid of some of these horrible symptoms. Of course I know that I will have to go slow and get the CBS problems corrected first. His illness and inflammation problems are beginning to make more sense. I have ordered urine test strips to check for sulfite levels. Has anyone found a home test kit to check for ammonia levels? I will be monitoring sulfites weekly and start working harder with my son's diet. I have decided to take out cow's milk first. Does anyone have a favorite milk subsitute and a easy way to lower sulfites. Wish I and everyone else on the forum had an "Easy Button" for all these immune related illness. Edit: My son also has 3 COMT genes that are -/-. My son needs methyl B-12. Gotta get his CBS corrected first or his body is not going to get what it needs to be able to function better. His body is very senstivity to pain and he is a slow metbolizer. He is +/+ for CYP2D6 S486T and +/- for CYP1A2 164A>C.
  17. I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good information somewhere along this route because of some of the aricles I have found. Any information would be appreciated. Here are some articles about fish oil that I found helpful but none are about treatment for PANDAS/PANS. On the last article you will need to click on MORE under Jacob Teitelbaum. This article does give a dosage. Does anyone use this much? http://www.lef.org/magazine/mag2012/sep2012_Fish-Oils-Health-Benefits_01.htm http://www.drperlmutter.com/grain-brain-seven-super-supplements/ http://www.sharecare.com/health/immune-lymphatic-system-disorders/natural-treatments-for-autoimmune-diseases
  18. I have been reading Buhner's Book on Healing Lyme Disease Coinfections. The section on Mycoplasma is great. I never knew realized what damage this horrible live bacteria could do to the body. So this mama is ready to go to war. My son has had a Genova testing done to analyze Omega 3,9,6 and saturated Fatty acids. My son is deficient in Omega 9's, Oleic, a-Linolenic , Arachidonic, and just barly in the range for Omega 6's. His AA/EPA is deficient also. I do give him fish oil but I know that these Omegas are not supposed to be mixed or they will cancel out each other. So do I need to alternate days when I give them to my son. Like MWF give fish oil and the other 4 days give Omega 9 and 6. Can Omega 9 and 6 be given together? Sorry for so many questions. Back to olive oil, Buhner recommends 2-3 ounces daily. I'm working towards that dosage with my son. I have actually found a drink to make up the olive oil and it hids the taste pretty well. Does Olive Oil help with Mycoplasma inflammation? I always thought that fish oil would help but my son cannot tell any difference with it. He has been on fish oil for at least 2 years. After reading Buhner's book, I'm totally convienced that we are dealing with Mycoplasma P. My son had testing on Monday to check for levels. Can't wait to get the results. Edit: One or two other questions. Does Olive Oil help the body detox? I add lemon to my son's water everyday. Should detoxing be done everyday when you are on an antibiotic? My son is on Bixan. So many questions, thanks in advance for any help.
  19. My ds doctor's appointment went very well this last Tuesday. Our cardiologist is going to start a more aggressive treatment plan. Testing from the Pandas study has indicated some heart antibodies are present. However, my son has not been diagnosied with PANS/PANDAS because of how his illness progressed. He has been put into another study at OU for POTS patients. This study is also looking at specific heart antibodies and receptors. The cardiologist has given my son another diagnosis and his POTS is the secondary diagnosis. This new diagnosis is a tongue twister it starts out as autoimmune anti-neuroantibodies ______ _______ ________ _________. I will be getting a letter for my son's school and it will be written down. So I will be able to tell you the diagnosis name eventully. Basically our doctor thinks the Mycoplasma has caused the brain antibodies. My son will be going for labs on Monday to see if Mycoplasma levels are going down or staying the same. He is also checking magnesium, iron, and other electorlite levels. The only improvement we tell is that the antibiotic is keeping his blood pressures up. Which is huge, since this stuff is affecting his heart and blood pressure. If his mycolplasma levels are not going down, my son will be change to another antibodic. Doxycline was discussed as a possibility. My son will be having lab work about every 3 months to check for the levels. I am really glad that our cardiologist is going to do the treatment because of heart and blood pressue problems. The cardiologist is also ok with us trying Burhner's herbs for inflammation. Since other medications have not helped in the past. However, we must start slow and he will moniter my son with EKGs after he has been on a new herb for one week. Our doctor also wants to start my ds on an immune supressing medication. IVIG was discussed but he is afraid it will make my son's current symptom's worse ( headache, scalp pain, and vocal tics). He really does not want to make these symptoms worse and wants to leave IVIG as last resort. He is trying to find something that is antiflammatory that will not increase these symptoms. Any suggestions on what to look at? I know our doctor is collaborating with other doctors. However, I wondered if anyone had found an immune supressing medication that kept these other bad symptoms from becoming worse? Last but not least, for those that are treating the Mycoplasma, Have you gotten rid of it yet? If so, How? Feel free to pm. I have went back and read several old post and have saved them under my favorites. It sounds lke this is going to be a very long haul. I'm hoping with the herbs and antibiotics that we can speed up this healing process. I am also waiting on my son's 23 and me results. I have also save all the old post and will share the results. Overall, we had a really good doctor's appointment and I finally feel like we are headed in the right direction for treatment.
  20. I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic acid and antibodies in Cunningham test panel were high. I have complained to an immunologist about my son's high pain levels. Our cardiologist has tried several different pain medications but nothing at this time seems to take the edge off except 800mg of moltrin. However, moltrin this high causes a sleepy effect, so that's not too helpful when trying to get school work done. However, not much school work was acomplished today. I have tried a lower 400-600 dosage every 4 hours but I cannot tell a difference and neither can my ds. BTW my ds is 5'10' and weighs 190lbs. His pain levels range from an 8 and can go all the way to 10. When levels get this high, he wants a dark room with no noise. We have been to the hospital when pain levels were high and he was given morphine. It took the edge off for awhile but not for long. I have also read about Low Dose Naltrexone for inflammation. Does this help anyone? If you have have the antibodies in the brain in a high range, is this normal to expect high levels of pain? Is this what causes the pain problems in your kids? I have also been reading up on the Kynurenic acid and understand that it causes the nerve pain with the presence of CaM Kinese. I guess I'm really trying to make sense of where my son's pain is coming from. I know it's not all from anxiety. He washes his hair every two weeks because he has very oily skin. But when he does it makes his headache and scalp pain worse. His vocal tics also start up but settle down about an hour later. He shampoo yesterday and today has been awful with incresed pain levels. I have been using the moltrin yesterday and today. But I want some pain relief for my son. Do you have any suggestions on some natural supplements? I am concerned keeping my son on moltin for a long period of time. But what would be considered a long period of time to be on moltrin? Just feeling frustrated. Sorry for the long post. Rachel
  21. I really did not understand what this was until I made the connect with another post. When my son became sick back in December 2010, I kept taking him back to the doctor because of a severe headache. The next symptom was the scalp pain and then his symptoms kept getting worse after each illness. On a recent test, the Kynurenic Acid showed up high and out of range 22.1 normal range (10.6-19.7) My son's worse symptoms are his headache and scalp pain. So I'm having a hard time of understanding why an immunologist doctor will not do some more testing in this area or is this a neurologist field. This can cause encephalitis. and I believe encephalities is treated more agressively. My son was checked for a few different types of encephalities on a panel 2 years ago but I am concerned about the NMDA Receptors Antibodies Encephalities. Is anyone on the forum dealing with this type of encephalities? I was also wondering if anyone was being treated for high Kynurenic Acid levels.What is the treatment? I have asked for my son to be checked for the NMDA encephalities but are there any other new forms of encephalites that have been found in the last couple of years? I have sent my cardiologist the following articles on Kynurenic Acid and thought you might want to see them also. Our cardiologist has been great about running new test to try and figure out what is causing my son's postural orthostatic tachycradia syndrome. With all this new testing, it does seem like it is immune related. Here are the articles. Happy reading. http://www.corporamed.com/documentos/organix/articulos/Quinolinate-Kynurenate.pdf http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2008.05241.x/pdf http://connection.ebscohost.com/c/articles/57250142/vivo-effects-antibodies-from-patients-anti-nmda-receptor-encephalitis-further-evidence-synaptic-glutamatergic-dysfunction http://www.gla.ac.uk/media/media_276791_en.pdf
  22. I have been researching Mycoplasma and I understand there are different forms of mycoplasma. Can mycoplasma P come from a tick bite? The first time myco P ever showed up in my son was after he had walking pneumonia. The antibodies also showed up high in his last testing. So I am assuming he has this form of Myco P from the pneumonia virus side. I don't want to confuse myself but would really like someone to clear up my confusion. Does this make sense? I was also wondering if all forms of mycoplasma were treated with the same types of medications such as Bixan and Doxycyline. I am beginning to see some improvement with my son on the Bixan. I usually have to give my son 10 grams of salt tablets through out the day along with his medications to help keep his blood pressures up. Since last Thursday, I am only have to give 3 grams of salt. I'll take this improvement and so will the cardiologist. His blood pressures are staying up. Which makes me wonder if these antibodies that showed up in the brain affected his heart. I am still waiting on a test from Dr. Cunningham about the antibodies and heart. I am still giving my son 300 mg of GABA and 250mg of Taurine at night and first thing in the morning. I have been able to cut down my son's extended release clonidine to .2. I should be getting the True Calm in the mail today and will try giving it at night instead of the seperate GABA and Taurine.
  23. I did some research on this yesterday but you guys are a pro on this. My son started taking Bixan on February 14th. This last Monday, he started complained that his back was really hurting all over. At first, I thought maybe he was getting dehydrated but he is drinking at least 48 ounces of water, 32 ounces of gatoraide, plus his milk consumption during the day time hours. He has to drink fluids to help keep his blood pressures up and his blood pressure medications must be taken with water. He still has a rash that will come and go on his arms. It does not itch or burn but he still gets hot when this happens. This happened when he was also on the last antibiotic. I have also noticed this morning his skin around his noise is dry and flaky. Could this be herxing? If so, is there anything that makes this more bearable. I am giving advil on a schedule. One other interesting thing that has been going on since my son has started this last antibiotic, is that his blood pressures are staying up. If this continues, I'm hoping I can lower his blood pressure medications this next week after I talk to his cardiologist. Hope everyone is having a good day.
  24. My ds was seen by a doctor in Texas last December. Finally got test results back and have a phone conference set up with the doctor this Saturday. The test results showed that my ds M pneumioiae IgG Abs was 953. Normal Range is 0-99. The funny thing is this same test has be done twice ( results were in range) after the titer showed up high 3 years ago. Does Mycoplasma only show it's head when there is an active infection in the body? I know this thing is hard to detect but I am in shock I guess. From reading I know it can move in and out of cells freely. If this has been in my ds body this long, what could I expect treatment wise? My son is on 250 Azthromycin and not seeing any improvement. Started it December 21, 2013. This test also showed the HHV 6 IgG Antibodies at a high range and I know that this indicates an active infection. My son's Anti-DNase B Strep Antibodies were at 390 which are high but I do not understand what this test is actually measuring. Does this indicate an active infection or past infection? Antistreptolysin O Ab was 15.1. Range is 0.0-200. To top it all off, my son ws diagnosied with strep 2 days ago. When this happen his vocal tic got worse and so did his tremors. I'm feeling just a little bit overwhelmed because I just want to keep him well. Big brother came down with strep 5 days before. How do you prevent the strep from spreading? My ds that has possibly PANS had already been on 250 Azthromycin since December 21st and now he is on Augmentin 2 times a day. I have been giving a probiotic before bedtime. How many hours should it be given after an antibiotic? How many days before you do a recheck to make sure strep is gone in both son's? Sorry to be asking so many questions. I will be getting copies of more new testing tomorrow. I am excited to know what may be causing the problems but very concerned about how I am going to keep my ds son well. Rachel
  25. My son has been on 250 mg of Azitromycin since December 21,2013. He takes this medication at lunch time. This week he started having a red rash appear on both arms. It is red and warm to touch. It does not itch. Is this a good sign this medication is working? Or should I be concerned? Rachel
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