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Found 4 results

  1. 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 Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015. In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain. In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015. In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out. Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon. My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.
  2. Hi, We recently got results of Cunningham Panel. D1: 1000 D2: - Pending Lysoganglioside: 80 Tubulin: 4000 Cam Kinase: 174 The test doesn't mention Likely or not likely due to pending D2 assay results. My son is 4.5 years old with Autism. He is non verbal , vocal stims, OCD, Visual stims, cognitive delays etc.We did Lyme testing through IGenex Western Blot. IgM: 41 +, 31- IND, 39- IND, 83-93 - IND IgG: 41 + CD 57 : 10 High Coxsackie titers : 1:400 Ref: <1:100 We are doing some Biomedical treatments through DAN doctor for past 2 years and none of the treatments really helped much for his vocal stims, visual stims. He is still delayed with cognition, speech. Can I know if anyone has got similar results of Cunningham panel and got diagnosed for PANDAS ? Treatments that really helped ? I really don't know which doctor to see and where to start with these results? My DAN doctor doesn't pay much attention to Lyme/ PANDAS/PANS. Thanks in advance
  3. Hello everyone, I'm 19 years old an have lived with an undiagnosed illness for eight years. Over the years, I've been given many different labels to describe the symptoms, but I've always felt that there was a deeper cause to explain them. Right now, the labels are OCD, Periodic Limb Movement Disorder, and suspected narcolepsy. My current symptoms are severe daytime sleepiness, fatigue, mild cataplexy, occasional hypnogogic hallucinations, multifocal myoclonus when I stop fidgeting, mental fog/concentration problems, intrusive thoughts, and recurring depression. I've had every blood test imaginable, and they have always come back normal—until now. I had a Cunningham panel done in December with the following results: Dopamine D1: 8000 (normal range: 500-2000) Lysoganglioside: 320 (normal range: 80-320) Tubulin: 4000 (normal range: 250-1000) CaM Kinase II: 114 (normal range: 53-130) They had a shortage of the reagent for D2, so I don’t have those results yet. How do I interpret all of this? The report didn’t say anything. Also, blood work I had in March that tested for inflammatory markers came back normal. Unfortunately, none of the numerous doctors I've seen lately have known what to do about my numbers, and I don’t know what to do anymore, either. After eight years, my symptoms continue to worsen, and I’ve had enough. I had no health issues until a sudden illness at eleven that started with extreme fatigue, which is very suspicious to me. I've been researching on my own, and from what I can decipher, elevated D1 antibodies (which I have) are associated with OCD, Narcolepsy, and PLMD. Can anyone confirm this? Have any of you with PANDAS diagnoses also had Narcolepsy or other sleep disorders? Although I’m almost cured of OCD compulsions thanks to ERP and CBT, my other symptoms are debilitating, and I don’t want to be sick for the rest of my life. Do you know if any of the treatments for PANS or PANDAS can help with the fatigue and narcolepsy? And is there any point in antibiotics or IVIG after having this for so long, or is the damage to my brain likely permanent? Any words of advice you have are very much welcome and appreciated. I know you’re not doctors, but I’d be curious to hear about any of your similar experiences and anything that has helped. Thanks!
  4. If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated with scarlet fever or rhumatic fever. I have learned that these illnesses can be caused by strep. However, I would really like to know what symptoms are associated with the brain antibodies. I was sent a couple of studies along with the test results but they did not go into detail about the symptoms that the kids were experiencing. I have found some information on scarlet and rhumatic fever symptoms. I suspect that my son probably had rhumatic when he was three years old. So if this happened first then I think the brain antibodies would come next if the strep did not get cleared up. Would like to hear what symptoms the brain antibodies are causing in your child?
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