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Rachel last won the day on September 21 2016

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  1. It really sounds like you may have something autoimmune going on. My son tried many immune boosting supplements and nothing helped. His neurological symptoms just kept getting worse after infections and viruses. He even did green smoothies twice a day for several months and saw no benefits. Have you done the Cunningham Panel test?
  2. Before my son was diagnosed, he had tried many of these psych meds. The meds made him worse. IVIG also made symptoms worse but plasma exchange was his lifesaver. When brain inflammation is present, psych meds should not even be prescribed until the inflammation is under control. What's so sad is that many doctors don't believe that molecular mimicry is real and can cause these types of illnesses. IVIG and plasma exchange are expensive treatments and should not be ignored when testing indicates the neural receptors are out of range such as measured in the Cunningham Panel. I think it's shameful that our children cannot get the treatment that they need. My son was unable to stand or walk, suffered with severe scalp pain, headache, hoarse voice, brain fog, hypersensitive to touch, and was also diagnosed with Postural Orthostatic Tachycardia Syndrome. Psych meds and high dosages of antibiotics did nothing for his condition. My son dealt with these symptoms for 3 years before his doctor finally was able to get insurance to approve IVIG and finally able go on to plasma exchange.
  3. The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.
  4. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  5. It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
  6. My son was treated with plasma exchange and his doctor did not recommend a retest with the Cunningham Panel. My son finished his treatment in July 2015 and has had no strep infections since. However, his doctor is checking for strep antibodies through ASO testing.
  7. Have you joined any of the Lyme facebook forums? Lyme is hard to get rid of and to treat. Have you been checked for coinfections? Low dose naltrexone is also being used by Lyme patients It helps with pain issues and helps regulate the immune system. Not sure how much it would help with some of your issues but it might be worth a trial. My best advice is to go see an LLMD and get back on antibiotics or try a herbal protocol.
  8. Have you tried magnesium? It makes a huge difference for my son. https://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/magnesium-and-the-brain-the-original-chill-pill Here is a study on nutrients and children's moods. This article might be helpful also. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf
  9. Do You know the levels of your IgA? My son's levels were low but not considered deficient (41 and normal lab ranges 50-90). Research states that people may have a hard time tolerating IVIG with low levels of IgA. It has something to do with the body rejecting the doner antibodies. I tried to get my son's doctor to order an IVIG that did not contain IgA but hospital only used one brand and would not make exceptions. My son only had 3 IVIG treatments but after each treatment, his symptoms got worse. If you do have an active Lyme infection, your body will react to IVIG and plasma exchange. My son tested negative for Lyme and coinfections but I was still uneasy after I saw how his body reacted after IVIG. Testing for Lyme or coinfections is not always reliable. However, IgneX is one of the more accurate labs. If you really suspect Lyme or coinfections, you need to be checked before doing Plasma Exchange. Plasma exchange takes the good and bad antibodies out. It takes out what your immune system needs to fight off an infection. My son's body was suppressed with plasma exchange. If he had Lyme or any type of coinfection, he might not have made it. As far as I know plasma exchange is not used to treat Lyme or coinfections but it is a secondary treatment for Basal Ganglia Antibodies. Oh my! Just read your above post. Please don't attempt PEX. Get to an LLMD quickly as possible.
  10. From what I understand about these antibodies, they will keep reproducing as long as they are in the body. Once the body accepts them, the body no longer fights them off. So when you get any new infections, you add fuel to the fire. Once the antibodies take over, it gets harder for the body to fight off any infections. If antibiotics will not fight off the infection, then you are in another losing battle. My son tried 6 months of antibiotics before doing IVIG and his symptoms kept getting worse. Once you get the antibodies out of your system, your immune system should reset itself and antibiotics should fight off infections.
  11. Have you tried Low Dose Naltrexone? It is the only medication that worked for my son. My son had severe scalp pain. So bad, he would cry when washing hair in the shower, scalp stimulation would cause severe vocal tics, could not tolerate a haircut, had hypersensitive skin issues so bad he could not tolerate a bed sheet and daily persistent headache with pain level at 8. After taking 3mg of LDN for 8 weeks, all pain, and inflammation issues are gone. He is also homozygous for the same 2 gene SNPs that you mentioned in your post.
  12. I don't know the answer about the number of treatments. It will depend on how quickly your body responds and if your body will stop making the antibodies. My son's body could not fight off any infections, so his body kept making them until the treatment finally wiped them out. His immune system was suppressed with this treatment. Have you been checked for other autoimmune antibodies? My son's doctor always suspected he had others like AAG which is very hard to diagnose in children. Gillian Barra was always a concerned because all my son's neurological symptoms got worse after having a double round of flu. My son's case was complicated.
  13. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf I know this study was done in 2002 but I use several of the supplements mentioned in this study with my son. Thought the article might be helpful to someone else.
  14. IVIG made my son's symptoms worse also. After the 3rd treatment, his doctor realized that he needed Plasma Exchange. I know to get it approved with insurance, he used medical research articles. My son was 14 when he started treatment. The plan was to do 3 weeks of 3 a week treatments and then go down to 2 treatments 2 a week for 6 weeks, and then one treatment a week for 6 weeks and then 1 treatment every other week for 6 weeks. However,after my son dropped down to 2 a week treatments, about 2 weeks later his worse symptoms returned and he had to go back up to 3 treatments a week for awhile. I suspect the amount of treatment needed depends on the number of antibodies in the body and the body systems that are being affected. Before starting treatment, he had the surgery for a port. Treatment is much easier with a port. If you go this route< i would suggest that after you finish the treatment, you start on Low Dose Naltrexone. It helps regulate the immune system. My son started on it after the last treatment he had and he has not been sick or had any symptoms return.
  15. Interesting article. I wondered if those kids ever got treated and what the treatment was. However, it sounds like some of the kids have not made a full recovery and that's sad for them and their parents.
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