RichGotsPots

Atenolol, beta blockers, can cause asthma to become worse. I was diagnosed with asthma before I figured out it was dysautonomia. Asthma meds don't really help me but albuterol kicks up my BP and HR. The BP boost helps a tiny tiny bit, while the HR boost causes shaking and adrenaline surges.

Never heard of that being used. Sounds like the opposite of what most people need.

Many biologics have very very deadly side effects much worse then old school immunosuppressants like prednisone. I feel like a lot of doctors are using us as guinea pigs I don't think that's safe or okay. If even one of us get the deadly side effects that's one too many. I think IVIG should be tried before one of those. Also IVIG has better results when combined with strong second generation immuno meds

The one way around the Part D may be to only get your IVIG in the hospital because then there may be a shot as getting it covered as a doctor procedure. Also I believe 2 years ago there was a big big problem were Medicare required all IV infusions in a hospital. That caused a lot of clinics to close. So it's really tricky. The other alternative is to get Plasma Exchange which is only in the hospital and is a procedure and would probably be completely covered..

I think he can't be even close to a cure. What that comment means to me is that the current study is proving that a high % of the 100+ samples were proving to be autoantibodies so that is why he is thinking to even create a "cure." I agree that there is virtually no autoimmune illness that was ever cured, only some have been knocked into a type of remission. Guillane Barre though which is immune mediate peripheral neuropathy has been "cured" for some people. Some GB people have residual illness still and some go onto a chronic form called CIDP. So a "cure" no way, but I am very hopeful this will prove it's autoimmune or immune mediated. Ultimately I also believe that the autonomic nerve is affected at different parts and different branches, especially the Vagal nerve branch... So I doubt a one size fits all solution will be found. But I do think IVIG may be able to help about 10% of POTS patients no matter which part of the nerve is affected.. Only 10% because only around 30% of AAG and CIDP patients are helped but IVIG

Orthostatic hypotension, Hyperadrenergic POTS, autoimmune dysautonomia..

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

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

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.

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

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.

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

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

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.

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

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

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.

Gjensen- any updates?

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.

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

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

Prednisone doesn't work across the board for every autoimmune disease. High doses for months didnt help me either

Looney- I don't see the autonomic connection in that article

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

Any way we can get insurance to cover some of the cost of a wheelchair?