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jayut

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About jayut

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  1. All great ideas. We did chase the initial IVIG with Saline, but I don't know how much. Also, I did stay very well hydrated before, during and after IVIG. We didn't try a slower infusion rate. The nurse kept checking my HR and BP during infusion and everything was great so they kept their standard infusion rate. It is odd that I didn't get the aseptic meninigitus until 1.5 weeks later. RX doc said he had never seen or heard of delayed aseptic meningitis and thought this was extremely strange. It took almost 2 weeks of Tylenol, Advil, and Prednisone to get the aseptic meningitis knocked down. It was terrible. It all escalated on Oct 31, Halloween. My daughters first Halloween to dress-up and she was old enough to be aware of what was happening. I ended up spending the night on the phone with the on-call doc trying to figure out what was happening and why my temperature was 104F. I hate when this illness gets in the way of some of the special moments. My current doc seems extremely cautious after my aseptic meningitis complication. As a result, he is trying to refer me to Dr. Steven Vernino. It's my understanding that Dr. Vernino helped design the Mayo DYS1 test. I hope this referral goes through.
  2. @p8d Thanks for the update. Please continue to provide updates. This seems very encouraging for you and gives me hope. Shotgunning by adding a few other folks with very old auto-immune history. @HyperPOTS8 @Natops @Miqual @diabeticgonewild @Shellee
  3. I found the following on the Mayo Site for DYS1 test. Interpretation Antibodies directed at onconeural proteins shared by neurons, muscle, and glia are valuable serological markers of a patient's immune response to cancer. These autoantibodies are not found in healthy subjects, and are usually accompanied by subacute neurological symptoms and signs. It is not uncommon for more than 1 autoantibody to be detected in patients with autoimmune dysautonomia. These include: -Plasma membrane cation channel antibodies (neuronal ganglionic [alpha-3] and muscle [alpha-1] acetylcholine receptor; neuronal calcium channel N-type or P/Q-type, and neuronal voltage-gated potassium channel antibodies). All of these autoantibodies are potential effectors of autonomic dysfunction. -Antineuronal nuclear autoantibody-type 1 -Neuronal and muscle cytoplasmic antibodies (CRMP-5 IgG, glutamic acid decarboxylase and striational) A rising autoantibody titer in previously seropositive patients suggests cancer recurrence. Cautions Negative results do not exclude autoimmune dysautonomia or cancer.
  4. Hello, My doc ordered the Mayo Panel around August of 2017. My results were: Positive N-Type Calcium Channel ab = 0.10 (Normal < 0.03) Positive Neuronal K+ Channel ab = 0.07 (Normal < 0.02) As a result, I was diagnosed with LEMS and completed a trial of 4 IVIG infusions in late Oct 2017. I then got aseptic meningitis 1.5 weeks after the last IVIG infusion. We hit the breaks hard and never followed up with IVIG therapy or IVIG boosters. However, in hindsight, December, January, and February were the best months I have had in 5 years. Makes me think that maybe the IVIG did have a positive affect. I crashed hard in late February and ran another Mayo Dysautonomia Panel 3 weeks ago. Unsurprisingly, the results came back as follows: Positive N-Type Calcium Channel ab = 0.51 (Normal < 0.03) Positive Neuronal K+ Channel ab = 0.03 (Normal < 0.02) Now I am completely perplexed. Doc appears to be on the fence and is not sure if this a true or false positive. A part of me wonders if he is nervous, because of my aseptic meningitis complication. Can anyone provide some advice or thoughts? What should I fight for?
  5. I recommend doing a search on pubmed for emf, wifi, rf etc. It's a bit scary how much comes up. If you haven't already, please read the articles in the OP. Unfortunately, I personally know 3 people affected with electrical hypersensitivity. All three engineers. Two have a PhD and one with masters degree. They are very smart people. I have an electrical engineering degree. I understand electricity. What I don't completely understand is the affect of massive cumulative and chronic exposure to all this new non-ionizing rf and emf at a biological level. This new technology is all in addition to the naturally occurring emf and rf created. What's the cumulative and chronic affect? Is it just enough to make for slight malfunction for those genetically or biologically predisposed? Are some of us the canaries in the coal mine when it comes to man-made rf and emf?
  6. The thought of electrical hypersensitivity sickness scares me. I have a friend who is affected and she had to move out into the country in a small trailer. I've installed some emi filters this week and this friend is coming on Friday with all her fancy measuring gadgets to inspect my house.
  7. I have been doing some research and it appears that EMF and Dirty Electricity has a direct affect on VGCC. We know that VGCC auto-antibodies create VGCC dysfunction and can cause dysautonomia. Therefore, is it reasonable to hypothesis that EMF and Dirty Electricity may be contributing to or exacerbating dysautonomia via effects on VGCC? EMF effects on VGCC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3780531/ Calcium Channel Blockers seem to block the effects of EMF on VGCC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3780531/ However, Rx calcium channel blockers seem counterproductive for POTS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4517341/ Magnesium is a natural Calcium Channel Blocker: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1751-7176.2011.00538.x "Oral magnesium acts as a natural calcium channel blocker, increases nitric oxide, improves endothelial dysfunction, and induces direct and indirect vasodilation.” Here is a very old dinet topic on Magnesium: I am starting with 120 mg Mg Glycinate BID and working-up slowly. Also, trying to make changes in my home to reduce EMF. What do you think?
  8. I have, but the one I saw didn't seem to have a clue about gastroparesis and dysautonomia. He wanted to do a colonscopy, but I declined. For some reason, it didn't make sense in my head.
  9. Just got back from ER. They gave me 2 liters of saline. It didn't seem to help like it had in the past. It seems like my worst symptoms are extremely low appetite and naseua. I try to eat but it just leads to naseua and I vomit if I eat too much. I've lost 15 lbs in the last 6 weeks. This seems excessive considering I'm 5'11" male now weighting 130 lbs.
  10. Yes, I am lucky. He is very patient with me and is willing to try. I have had 32 doctors before him that gave up on me.
  11. I'm a people pleaser. It's so difficult for me to say "NO" Good to know about the high BP. I'm glad to know I'm not alone. I feel like my nervous system is struggling to find homeostasis. The slightest misstep and it goes back onto chaos and my symptoms go through the rough.
  12. A lot of good questions. "why did you stop the propanolol?" I was only on it a week and then started declining fast. I assumed propanolol may be causing my decline. " in my case IV fluids" I wish I could get my doc to give me an Rx at an infusion center. I have been going to ER when I am in desperation, but it is expensive and not a relaxed environment. "How were you diagnosed? Did you have a TTT? Often this can point towards the type of POTS you have by monitoring your Bp ( drop or elevation when upright )." Yes, TTT diagnosis at Austin Neuromuscular Center, but treated at another clinic. I was not given a type of POTS from the doctor. My BP was very stable during the test. It isn't until this current crash that my BP started going much higher than usual. Up to 145/95. I have never seen my BP this high. When checking myself I have always had lowish BP. "Also - have you been diagnosed with EDS? " I have not been diagnosed or tested for this condition. How is this tested? "Have they checked your neurotransmitters? " No. I have been asking for this, but doc doesn't seem interested. Does the test have a proper name? My current doc seems to want to do trial and error with meds to see what sticks. This isn't working, because I seem so sensitive to things and when we are wrong I always seem to have the worst possible side effects. I can very easily travel to Houston and stay with my parents. Is there anyone that can recommend a doc or clinic in Houston?
  13. Hello, I am new to the forum. I was diagnosed with POTS on Nov 1, 2017 after 3.5 years of searching for answers. Since being diagnosed, I have adopted most of the common lifestyle changes and I take 0.1 mg florinef. I have seen some benefits, but was still fighting to make more progress. One month ago, a combination of events has sent me into a tailspin. The events were (1) trying to taper off zoloft too quickly, (2) tested Propranolol 5 mg BID, and (3) overextended myself while trying to keep up with my family during spring break vacation. I since have reinstated Zoloft about 4 weeks ago, stopped taking the propranolol, and spending a lot of time bed bound. However, recovery doesn't seem to be happening. Can this wonderful community help me with the following? What are some strategies people have used to to stop a crash and get back to a more functional state? Is there anyone on this board that can recommend dysautonomia POTS doctor in the Austin, Texas or Houston, Texas area? My current doctor seems very focused on managing the illness symptoms which seems to be par for this illness; however, I am very interested in digging much, much, much deeper with some testing to try and find root-cause. Are there any resources that I could read that could provide direction and testing recommendations for attempting to find root-cause? Other comments that may help. I completed Mayo Dysautonomia panel. VGCC antibodies were slightly positive; therefore, we tried a round of IVIG in Oct 2018. I got aseptic meningitis so that was put on hold 5 months ago. We are going to re-run that panel again once I can get to the hospital for a blood draw. I have tested Pyridostigmine, but it didn't seem to have any affect in a positive or negative way. Usually, I have an elevated HR and slightly lower BP when I become symptomatic, i.e. 110/70 on florinef and 80/50 prior to florinef. However, in this crash I seem to have elevated HR, but very random BP ranging from 110/70 to 145/95. Having an elevated BP is completely new to me and I don't know what think or how to react to this ever changing and random BP situation.
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