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toomanyproblems

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About toomanyproblems

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  1. For the question about Ig. I've been getting IVIg off and on for three years. A nurse comes to my house and does the infusions. A neurologist ordered it but it was extremely hard to get insurance to approve it because it's very expensive. I've had to have the dosing and schedule adjusted because of adverse effects. When I last got it, I was getting 30g over one day every two weeks down from 60g over two days every three weeks. The biggest problem I have from it is brain swelling. I haven't gotten it in a few months due to Covid. I can tell the good effects are wearing off. Since it appears Covid is going to be with us for some time I'm considering going to subcutaneous Ig where a nurse will come out only once to check off that I can do the injections myself. Then I won't need to have someone in my house who could infect me. I live in NC where the cases are on a steady climb. The main condition I was prescribed IVIg for was autoimmune autonomic neuropathy but I have many diseases. A few right off the top of my head are hyperPOTS (by BP and HR), complex regional pain syndrome (CRPS) type I, gastroparesis, small fiber neuropathy, Elhers-Danlos hyper mobility type, undifferentiated connective tissue disease (sort of in the middle of Lupus and rheumatoid arthritis with symptoms from both), migraines, a heritable polyendocrine disease called polyglandular autoimmune disease type II (PGAII or APSII) which includes in my case, primary adrenal insufficiency (Addison's), thyroiditis, primary early ovarian failure and a few other more minor things. This PGAII also predisposes me to other diseases such as type 1 diabetes, myasthenia gravis (I've had ocular myasthenia for over 30 years) and MS. My daughter inherited this from me but has not yet had time to accumulate as many diseases this can cause as I have. I also have an abnormally high hematocrit which is probably a relative polycythemia caused by low plasma volume. I believe my relative high red cell to plasma ratio causes my blood to be "thicker" and because the IVIg increases viscosity further, I have more adverse effects than someone with normal blood "thickness." I find a lot of things are helped at least a little by the IVIg and some by a lot. It's the only treatment I've had that's really helped overall although I did have improvements when I was taking Plaquenil along with azathiaprine (Imuran). For POTS specifically, it did not improve my HR but it does decrease the dizziness and I can do more thus increasing my quality of life. I pass out less. I did have periods, sometimes that went on for weeks or longer, where I'm mostly bed bound even though I can bath and get to the bathroom, even if I have to use a motorized wheelchair to do so. The frequency of these times is less and the periods are for shorter stretches of time now in general. In summary, IVIg or subcu Ig may help your wife but it's hard to get insurance for it the US. I'm sure it's clear from the above my case is very complicated so it's hard to tease out the efficacy for my individual diseases. There's no doubt it helps me overall.
  2. When this happens do you feel too full if you eat more? I'm asking because sometimes gastroparesis is accompanied by dumping syndrome, where instead of the normal delayed emptying from gastroparesis, the stomach suddenly dumps its contents without trying to digest them. I normally have delayed emptying but when I've had a POTS flare, I've also had dumping. I think it's just a screwed up ANS problem. I can see how if you have dumping you could have hunger pangs.
  3. Mine flips as you describe and goes back again over fairly short periods of time. I have hyperPOTS by BP and HR. But I can have orthostatic hypotension on any given day. Usually at night.
  4. Vision is one of three ways we maintain balance. Dysautonomia greatly stresses balance so it can "use up" all of your natural processes. I commonly have trouble with more dizziness after reading or studying something intently using my vision. Dysautonima is one of the rare causes of tunnel vision. Vision takes up a large part of the brain's function. When circulation to the brain is compromised like being upright when you have POTS and are about to pass out, the brain tries to maintain vision as long as it can by decreasing the focal range to only the center of the field, thus tunnel vision. I have had this before when I'm about to pass out. This is all to say your vision can be compromised by POTS. I imagine it's quite common. And KiminOrlando is correct. Compromised balance is even more compromised when your surroundings are moving, like driving or riding in a car when there is a lot of new information to process from your eyes to your brain. The system can become overloaded.
  5. I had pretty significant differences once after a steroid injection in my spine. Not just once, but for several hours. It was scary but eventually the readings became closer. It was definitely outside of normal variation.
  6. Or you can have both. Winter of 2019 I had a very bad spell of a couple of weeks where my BP, which can trend from high to low and back in days' time was swinging from high to low within a day, and the highs and lows were more extreme, especially the lows (one recorded BP of 52/40). I was passing out a lot. I was also having extreme issues with controlling internal body temp -- fluctuating between uncontrollable hot flashes and sweating to freezing cold in a cycle at least every hour and at its worst, every 20 minutes. I had big cool packs and a heated blanket on my bed to combat these problems but this happened night and day and I couldn't sleep. I was exhausted. As for the gut, I've been formally diagnosed with fairly bad gastroparesis since early 2016 but I've had it longer. The abnormal EGG and gastric emptying were well documented in 2016. However, during this time in 2019 I would swing from symptoms of delayed emptying to dumping. I lost ten lbs in ten days and I'm normal weight. I came to view this period as an increased lack of buffer of my ANS, allowing more than my normal swings from lack of buffering. I eventually came out of it back to my normal ANS problems. But I have since randomly experienced the dumping on occasion peppered in with my normal gastroparesis symptoms. I sometimes read a gastroparesis forum where some people describe having both slow and too fast motility. I have hyperPOTS by BP definition BTW.
  7. I'm sorry. I didn't mean to sound like I thought your question was poorly worded. I really just wanted to find out what you meant by IgG positive. *I* should have worded better.
  8. The IgG the covid test, or any antibody test for that matter, is looking for IgG specifically directed against an antigen, sites on the coronavirus causing COVID in this case. This is only fraction of one's total IgG, which will consist of individual antibodies directed against thousands, and possibly millions of targets. I'm not sure what you mean by IgG positive?
  9. Would you mind describing what symptoms were helped by Wellbutrin?
  10. You've always seemed to have your finger the pulse for this disease. Can you briefly share your relapsing and remitting course? I understand if it's too much to ask.
  11. I've had to take steroids for over 30 years for my primary adrenal insufficiency (Addison's). Sometimes I have to take over the normal physiologic replacement dose because of flare ups of other autoimmune diseases I have. I have hyperPOTS. My POTS symptoms don't get worse with extra steroid. The extra steroid helps a lot of my problems but not the POTS.
  12. While appears true the virus can bind to the ACE2 receptors and may enter cells this way, it's not immediately clear how to use this information to protect people from infection. As research delves into this virus more over time, other possibilities arise. In the link below, a recent paper describes through a docking model how ORF8 and surface glycoprotein could bind to porphyrin and how orf1ab, ORF3a and ORF10 proteins of the virus bind to and disrupt heme on the beta chain of hemoglobin, causing less hemoglobin that can carry oxygen. This article makes the argument that because oxygen binding is then decreased, the patient cannot keep their O2 saturation up, which is a reason they die, despite being on ventilators with oxygen being pumped into their lungs. This article makes a case for chloroquine efficacy to reduce the disruption of heme from porphyrin molecule by the virus. https://chemrxiv.org/articles/COVID-19_Disease_ORF8_and_Surface_Glycoprotein_Inhibit_Heme_Metabolism_by_Binding_to_Porphyrin/11938173/6 There's a link to the PDF download of the entire article on the page the above link links to. The translation of this article is not perfect, as you will see. However, this is an example of one of the many new theories being generated in a short period of time.
  13. Many of the precautions are circulating widely and now known to most people interested. In addition here are some facts as we know them right now for the coronovirus: It can survive in/on: Air - for up three hours Copper - for up to four hours Cardboard - for up to 24 hours Plastic and stainless steel - for up to three days Of course factors such as humidity and temperature will affect its survivability. These figures are under favorable conditions. Since I've been thinking about this for a while, I've been honing strategies to minimize exposure from surfaces like leaving my mail in the box for 24 hours and leaving non perishable grocery or other bought items in the hot car for a while before re-touching them to bring inside. You get the drift and can add and modify as needed. We can wash hands and use sanitizer and wipes all we want but if the items we touch after are contaminated we'll just recontaminate our hands. Spread can be minimized by paying attention to what specific items we're handling and touching that are contaminated, thinking of how long they may be contaminated and ways to wait until they are safe.
  14. Hi Scout, The panic of the last two days is not where I am. I've been quietly preparing for at least three weeks because looking at reports from overseas, I could see it could be bad here and that I was at extreme risk if I get it. I've done what I can and so now I will wait. Stay safe and try to flatten the curve for the sake of yourself and everyone else.
  15. Hi Kim. This may be the info on plaquenil you were referring to but I included the link below anyway. There's a PDF link to the full scientific paper in the summary I linked. I did read and evaluate the full paper as a scientist and it looks pretty good. It was used a little during the SARS-1 outbreak so they had info to help. If you are already on 400 mg of plaquenil a day you may have a leg up. Thanks for bringing it up. Unfortunately, I don't take it anymore and I don't have any left. https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa237/5801998
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