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Everything posted by RichGotsPots

  1. Medigap has a flaw/black hole clause when it comes to covering very expensive drugs or treatments. Basically you have the standard that covers 80% then you get a medigap part C plan that covers the rest of the 20% minus co-pays and deductibles. Then you have part D drug plans. The drug plans are where IVIG falls under because the IVIG bag is ordered from pharmacies, then administered at home by a special nurse, in a clinic or in a hospital. Part D has the flaw. I called like 5 different companies and they all don't have a clue until you explain what IVIG is, then they figure out only a tiny bit is covered? It's a real crime!s
  2. Yes. I now run the largest group of autoimmune and autonomically dysfunctioning people in the world. Almost 2,000 now. About 1/4 of the members have at one time or another been on IVIG. Probably another 15% has been denied it. Out of the 500 or so that have taken it, it helps about 30% with autonomic dysfunction. Costs $15,000/month at least. Through medicare you end up paying bout 80% through private insurance or obamacare you pay a co-pay or less then 10%. That's why I haven't switched to medicare yet. Both types are very hard to get approval for. I had 4 top doctors all try over the last 2 years and all failed so far. There are pretty bad side effects with ivig. The best plan is to do ivig maybe 3-6 months until you get benefits from it and then switch to high concentration sub q IG. That's what many CIDP people are doing.. Immune deficiency people get much lower ivig doses and thus less side effects.. Hope that helps
  3. The study is set to expire at the end of the month. Mean it will be completed then. Anyones guess how long it will take to turn around that data into something they can publish in a journal. That's when we will get results. Meanwhile it's promising that Dr. Kem is stating that he is already working on a cure. A little shocking too.
  4. Hey Rama, did you just come back. I haven't been here in such a long time and I see you posting. Coincidence? Nicotine affects the nicotinic receptors which are part of the parasympathetic nervous system. Cigs have all sorts of chemicals not just nicotine so that wouldn't be good trial or treatment route. The issue is if you have nicotinic problems. Currently hard to tell. If they come out with an antibody test for each receptor then you might be able to know and then treat accordingly instead of throwing darts blind folded. The closest way to know is valsalva, that at least indicated parasympathetic dysfunction. On the other hand even if someone has only sympathetic dysfunction then it might be good too in the case of hyperadrenergic pots for example. But then again if someone read on a valid source that its a vasoconstrictor that would mean it has a reverse affect. The main thing to consider here is direct affects on the vagus nerve which control parasympathetic response
  5. It is a piece of cake, it takes 5-10 minutes opand only general anestesia. But if you want it not to permanently hurt you then you need to go to an ent or oral surgeon who does ateast 5 a week. Not someone who does 1 a month.
  6. ALA is not for autonomic neuropathy, it is for sensory neuropathy and proven only in diabetic sensory neuropathy studies. I have taken high does of it without side effects or benefits. It's also used in the Mito Cocktail
  7. Clonidine purpose is to lower NE. Hyper pots people have too much NE and take it for that reason. It doesn't really lower supine BP mainly orthostatic BP unless he would take a lot. So that's probably the reason it doesn't affect his BP because he is sleeping and supine
  8. Not sure what you mean. Toporol, a beta blocker, blocks beta autonomic receptors. This slows HR and lower BP. I am not aware of it causing permanent damage to the receptors, it has a short half life actually that's why they make an ext version of it now. When I took it after I had pots it lowered my HR but made my BP wacky, like wide and narrow.
  9. I have been trying to get ivig for almost 2 years now with 2 different insurance companies and 3 different doctors trying. It's very very hard. Most insurance companies list the approved illnesses to get it. I know ppl whose doctors just picked one of the illness on the list and got it. Some have gotten low doses of it with a primary immune deficiency. Good luck
  10. There is Definately a geographic pattern emerging. I have been too lazy to post the poll on other surveys because 13 responses really isn't enough. I was hoping for 100+ of well
  11. Even though low vit D is related to many illnesses including autoimmune the science is still not out on whether it's the actual vit D contributing. There could be benefits from low dose radiation the sun's rays provides one example. Someone told me their holistic doctor told them the indirect sun light in the eye helps regulate the thyroid or pineal gland activity. Not sure if there is truth to that. All zi do know is that I feel way better in the summer, despite my severe heat intolerance.
  12. Targs I updated the poll. Also I am seeing a trend of mostly 30+ from the equator. Also I was to emphasis that during certain hours of the day, even if it is very sunny, that there are not UVB rays to help make vit D. For me right now after 4:50pm I couldnt make vit D. Even if I sat out in the sun from 5pm-7pm. Or 8am-9:30am. Here is a link to the vit d doctor from Boston. I didnt watch this video but he has a lot of them.
  13. I will try to post the videos soon. Also keep in mind that UVA rays cause cancer and the uvB rays do not and and they are what creatrs vit D. There are also special uvB lamps that only create vit d. Also the vit d do tor said that most of the skin cancer is in places that are not even exposed to the sun. He said all we basically need is 15-30/day. He have an app that is free that i downloaded and ot tells you what times of day u can get vit D and based on the uv index how many IU/min it makes
  14. Hi Everyone, It's been awhile since I did a poll. This is a good one so I hope everyone will participate. I thought of this because it's believed that POTS may be an autoimmune disease. And I once saw a very famous autoimmune doctor on youtube give a lecture about autoimmune disease and the future of research and treatments. He said that a huge study was done to confirm that autoimmune disease is more prevalent the further away from the equator people lived. No matter further south or further north. That got me thinking. A lot of autoimmune immune diseased people are low vit D and so are a lot of us. So I watched another famous vit D doctor/researcher give a lecture on youtube and he says that in certain climates over 35-40+ degrees away from the equator the sun no longer makes vitamin D during certain cooler months. He tested that theory in Boston where he works and during the winter a person could not get vitamin D from the sun. So I'd like to Poll our community here and on Facebook and see if we can get maybe 300-500 person poll. Since everyone doesn't know their latitude by heart I found an interactive website for you to look it up and answer the poll. http://itouchmap.com/latlong.html Thank you for participating! Rich
  15. Prednisone doesn't work across the board for every autoimmune disease. High doses for months didnt help me either
  16. Looney- I don't see the autonomic connection in that article
  17. Looney- too much B6 like the 1000%+ that normal supplement have can damage autonomic and other peripheral nerves. Melatonin can lower BP People need to be careful with supplements and otc meds... I can get so wired that I dont sleep until about 11am
  18. Any way we can get insurance to cover some of the cost of a wheelchair?
  19. Most autoimmune meds will not protect autonomic system. Either IVIG or Plasma Exchange which are like a blanket autoimmune affect or Rituximab might be used but more studies need to be done. For AAG they don't really have effective treatments yet either
  20. Here is an update: i stopped driving i. July 2013 until about 3 months ago. Now I can only drive 5-20 min depending on the day. But I worry if I will ever get pulled over or if I get into an accident (not because of pots) that I won't be able to handle the adrenaline rush from it.
  21. Yes to both also low vit d is indicative of autoimmune disease
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