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Rachel

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Everything posted by Rachel

  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 shamefu
  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
  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, a
  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
  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 antibiot
  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 r
  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.
  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.
  16. http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html I don't know if this article would help or not but brain inflammation is mentioned. Do you take L-Methylfolate? If not you might ask you doctor about this supplement. My son did the 23 and me testing a few years back. When pain becomes overwhelming depression can creep in and you don't want that to happen. I don't know if IVIG would deplete any of your body's nutrients but PEX was hard on my son and I had to use additional supplements to help support his body when he wa
  17. My son did not tolerate IVIG because symptoms got worse. He was also pre-treated before having IVIG. However, my son had a low IgA and people with low IgA's have a hard time tolerating IVIG. There are different brands that contain little or none of the IgA. The hospital that my son was treated at only used one brand and nothing differently could be ordered. His doctor could not order anything different because of the rules and regulations of a teaching hospital. My son had to do plasma exchange because his body could not tolerate IVIG. Hope your doctor is able to get it figured out
  18. The only way to get this figured out is to see if your PANDAS son has an active strep infection. If he does not, then his body is most likely reacting to the strep that your younger son is trying to get rid of. The body of a PANDAS patient is very sensitive when it gets exposed to this stuff. Since Tics have not stopped, you might ask your doctor about doing a different antibiotic. You might also need to try a different probiotic. Sorry, you are having to deal with this. Sometimes it's really hard to get the tic cycle to stop. Whenever my son was exposed to strep, vocal tics were the
  19. That's just my personal opinion about the Cunningham test because of what happened in my son's situation. My son is also on 250 VK penicillin daily. Not sure if a prednisone burst would interfere with those new results either. My son could not tolerate high doses or low doses of prednisone. It made his vocal tics worse. But if your son got a major infection and symptoms went through the roof, that's when I would recommend another Cunningham Panel especially if antibiotics are not helping.
  20. My son has been using LDN since July 2015 for chronic pain issues. He had severe scalp pain, a daily headache, and hypersensitive skin issues. After being on 3 mg of LDN for 8 weeks, his pain issues are gone. He has been pain free for over a year. I also take LDN for some chronic pain issues that are caused by autoimmune illnesses. My pain issues resolved in about a month. I have been on this medication since last October. Neither I nor my son has been sick with colds, flu or other infections. It works with your immune system. Don't think either one of us will be getting rid of LDN any tim
  21. My son does have lyme or cvid but did have high levels of basal ganglia antibodies. He tried IVIG for a few months but it did not help. We were not seeing any improvement.He started plasma exchange and did it 3 times a week for 3 weeks and saw major improvement. His doctor dropped him down to 2 treaments a week and after 3 weeks all major symptoms came back. We have no idea how long the antibodies had been in his system but his symptoms were quite severe and caused Postural OrthostaticTachycradia Syndrome symptoms to become much worse. His blood pressures were extremely low 61/43 with high dos
  22. Maybe this article would be helpful. OCD is hard to deal with. http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html
  23. My son lived with a constant headache for several years and tried many medications. BTW Neurotin, made his symptoms worse. My son also had severe scalp which was most likely making his headache worse. My son has also had IVIG and Plasma Exchange. Be sure to get the premeds before IVIG if you will be trying this treatment. My son did not do well with IVIG it made his headache worse. The only thing that helped lower my son's headache for an 8 to 6 pain level was ER Namenda 14 g twice a day.However, his headache did not go away until he was put on 3mg of Low Dose Naltrexone. It took 8 weeks for i
  24. I agree with sf above. Repeat that testing first. The first time my son had the Cunningham test, everything was in a normal range. The second time my son had the test, he had a double ear infection. Strep plays a part in ear infections. His test showed Cam Kinase II at 234 and Dopamine 1 receptors at 4000, D2 8,000,Lysogangliosides 320, and Tubulin 1000. On the first test my son had the titer levels were exactly 1/2 of the levels except for his Cam Kinase which was at 119. Just my personal opinion about the Cunningham test but an infection will cause the antibodies to rise. I would only have m
  25. Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Ex
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