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RichGotsPots

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Everything posted by RichGotsPots

  1. Yup hopefully after the conference I will get my hands on the presentation slides
  2. When I'm in a major flare I can't tolerate sugar that much at all. Alex- there is one brand of IVIG for diabetes patients that doesn't have sugar in it. Rich
  3. Hello everyone, This is a small continuation for my theory of the cause of POTS. Just to refresh my theory is that 90% of more of us have autonomic nerve damage. The Mayo finds that 50% of use have autonomic nerve damage but the Mayo uses QSART to test this rather than the more sensative skin biopsy. Also the skin biopsy and QSART are both only testing post sympathetic nerves. My theory is we have damage all over the nerves on different parts. So here I will out line a little how this affects our symptoms. Also I want to point that while I believe that this nerve damage is the cause for our autonomic dysfunction we all have different causes for the nerve damamge. Most of the causes with come down to damaging the outside connective tissue that surrounds the nerve and the others can come dome down to metabolic issues such as Amyloidosis or Diabetes which affects the chemical biology of the nerve cell itself. So there is basically 5 parts to every autonomic nerve fiber (pretend its like a cable wire or a fiber optics wire. And there are 2 types para and sympathetic. So 10 parts in all. Para and symp nerves are completely seperate nerves and on occasion they aren't both found in every organ, which is the case in the skin or sweat gland. The nerve fiber originate in the brain stem and goes down the the spin to the Dorsal root. That's part #1. Part #2 is the pre ganglionic nerve. Part #3 is the Cholinergic synapse, this part is located in both para and symp nerve fibers. Think of this part as the bolt that binder two cables together to extend it. Part # 4 is the Post Ganglionic nerve. Part #5 is different for para and symp. For para this synapse releases Acetylcholine (just like in the cholinergic synapse of both of them) and for symp this synapse releases Norepinephrine. Ok so here is how my theory plays out so far with what we know. As I said 50% of POTS people according to Mayo has damage to symp part #4. Now here are some others. Autonoimmune Autonomic Gangliopathy is a rare form of POTS that is getting more attention these days. People who have this actually have antibodies that attack Part #3 the Cholinergic Synapse. So right there you have another part of the nerve being damaged and AAG people usually present which certain symptoms like gastro motility issues and impaired pupil dialation, etc.. I believe that Hyperadrenergic POTS is because of damage to Part #5 of the symp nerves. Btw adrenergic means adrenaline and what they mean is Norepinephrine which is dispensed and detoxed in Part #5 of symp nerves. Some have the theory is the detox (norepi transporter system) is broken. Anyway you slice it, it's nerve damage. Parasymp nerves are not really tested directly they are only tested in response to things like breathing in the Valsalva test. This points to nerve damage alone the para nerve but not to which part. So you see different nerve damage= different symptoms, of course when you add in different underlying causes then there is a whole mess up symptoms. But I am trying to stick with the direct autonomic symptoms differences. Also a number of things are affected by nerve damage because our nerves are living commuter messengers for our brains, then the messengers start talking a different language communications are fudged big time. This has a broad range of implications for example with medication responses. Most meds do not cross the blood brain barrier and so the brain find out what response to make based on the nerves sending signals to the brain. Also nerve cells have mitochondria and if the whole nerve cell is damaged than any atomic level atom inside it is damaged too. Now consider that out of all 10 parts they only directly test part #4 in sympathetic nerves in the sweat gland of the skin. I have yet to see any testing that correlates sweat gland nerve damage with other gland nerve damage yet we know for a fact that some pots patients have cardio nerve damage, gastro nerve damage and so on. So really all the differences in our symptoms come down to 3 main issues. What is your cause, which out of the 10 parts of the nerves are damaged and lastly which organs have the nerve damage. What I see is that in the next 20 years or so technology will improve so that doctors can see damage to the other parts and to the parasympathetic nervous system as well directly. This will allow for better treatment and better targeting and possibly direct healing of that part of the nerve damage and a particular organ. Rich
  4. Hi Rachel, I have known about the mayo panel for awhile, but have not been able to get a dr. Here in Jersey to order it unfortunately
  5. Alex- yes IgG have been implicated in MCAD before and they are also well known in Amyloidosis, which can caused POTS. In that Paragraph though it brings together MCAD, Inflammatory disease (i.e. autoimmune connective tissue disease), Dorsal Root Ganlia (which is the begining of the autonomic nervous system which is located in the spine. This is the part I match up to POTS)
  6. Spinner I definitely think that for part of our breathing problems there is a central nervous system/brain component. It hasn't been studied at all ever. But meds like klonapin, SSRI, even adderal I believe work because they helping in this area. Xanax hasn't helped me and I haven't tried other anti anxiety meds yet, but something that helps me completely with breathing issues and talking to someone, listening to talk radio in the car, searching the internet and watching tv. If I watch TV while I clean or cook my breathing problems are delayed by more than double the time. It's like whatever triggers the breathing problem is distracted for the moment. Reading doesn't seem to work and can actually exacerbate it. At the same time usually anxious situation hardly ever trigger problems unless it is really really bad and makes my heart pound. But the main triggers are all heat or exertion induced.
  7. You're welcome Janet. a lot of ppl tell me that tell me that they take a BP lowering med and a BP raising med at the same time and they have good results like you. The problem for me was Mestinon and florinef didn't work enough to keep my BP up. Also please make sure that with Clonidine especially not to stop it abruptly or else it can cause rebound effects. Rich
  8. Terrier-prednisone actually mimics cortisol, which is a big hormonal part of the fight/flight response Rachel- thank you i have heard from a bunch of ppl with all sorts of autoimmune issues that a few steroid bursts know their illness into remission. I think though that nerve damage could play a negative role in those results. The worse the damage less the steroids could work. Thats just based of of some studies I have read and other anecdotal evidence. Wish they would study it more.
  9. http://www.jni-journal.com/article/S0165-5728(09)00012-5/abstract
  10. Increased levels of free Ig light chains have also been detected in various inflammatory diseases. It is important to note that, in contrast to increased levels in lymphoma patients, these Ig light chains are polyclonal. Recent studies have shown that these Ig light chains can bind to mast cells and, using their ability to bind antigen, facilitate activation of these mast cells (Redegeld (2002)). Activation of mast cells results in the release of various pro-inflammatory mediators which are believed to contribute to the development of the inflammatory disease. Very recent studies have shown that Ig light chains not only activate mast cells but also dorsal root ganglia (Rijnierse, 2009)) and neutrophils (Braber and Thio (2012)), expanding their possible role as mediators in inflammatory disease.
  11. Hi Janet, the only med that slows sinus heart rate without lowering BP is Ivabradine, whichis sold only in Europe. A few people get their docs to prescribe it here and get mail order from canada or europe. BB also make mine worse
  12. Alex it's only for churg strauss, and other conditions related to high Eosinophils. 5% of all asthma patients have elevated serum Eosinophils for example so it will probably be an asthma med in a year or two.
  13. Here is an old poll I took about breathing problems and treatments. Part 1 and 2 http://forums.dinet.org/index.php?/topic/20049-dysautonomia-breathing-related-issues-and-treatments/page-3 http://forums.dinet.org/index.php?/topic/20096-part-2-dysautonomia-breathing-related-issues-and-treatments/
  14. We haven't had much discussion about this in awhile so I was thinking about making a poll. Also what I found out was that in 2006 when my asthma and pots first appeared I went into remission with high dose inhaled steroids and a healthy diet. Now when my pots and asthma came back stronger my inhaled steroids no long worked and neither did high dose prednisone (50mg) I found out about 5 months ago I have mild Sjogren's Syndrome and now I am looking into a vasculitis called Churg Strauss Syndrome. In my research on Sarcoidosis, another lung related autoimmune condition, I cam across a study that showed that autonomic neuropathy or Small fiber neuropathy patients no long responded to prednisone. This study was done at the Cleveland Clinic. I would be willing to bet that once the autonomic nerves are dysfunctioning that the signal response to prednisone is impaired. Perhaps those signals are actually how prednisone works. The nerves send a message to the brain and the brain sends more signals to the immune system. There for other medicines are probably need instead. In the sarcoid study when prednisone no longer worked, IViG helped 66% of patients into remission. In Churg Strauss luckily they know that it's Eosinophils that are causing all the damage to targeting them is what is most important to recovery. They usually start off with cyclophosphamide (a chemo drug) and high dose prednisone. Now they are also using Rituximab with similar success. Then they maintain with prednisone and mexotrexate. But now there is a new drug on the horizon with hardly any of those dangerous side effects that just lower Eosinophils.
  15. Tachy- I took high doses of inhaled steroids at the same time not in pill form like with prednisone. Luckily I think I am going to a place where they will take CSS very seriously. I wish I was seeing the main dr there so we will see what happens. I go in one week.
  16. Sarah, I had to learn a lesson the hard way. I first got sick in 2006 and then went in to remission after 6 months. I forgot I was ever sick for 4 years and then bam it came back much worse. Everyone should learn from that, that we can't pretend like we have no causes because they can be silently building up. Knowledge is power. It took me over a year to know I had autonomic neuropathy, then another 6 months to know I had Sjogren's and now soon after 2 years finally getting evaluated for vasculitis. If I do have vasculitis and if I ignored it and left it untreated it could actually kill me if it went into the necrotizing phase. Doctors and tests are annoying but we have to be our own advocates and keep pushing for answers. Idiopathic is not an answer.
  17. I have to try not to give medical advice because sometimes I forget I'm not a doctors. So I will just say that the skin biopsy is 80% more sensative in picking up a sweat gland autonomic neuropathy vs. 55% with the QSART. The QSART is better at picking up length dependant neuropathies because the skin biopsy is only done on the legs and the QSART can be done anywhere. Also the nerves in our odies are always trying to regrow and regenerate so at any one time there can be a flucuation.
  18. Hi Kim, that sounds great! Hope it helps, I think it will! Usually after 3-4 weeks you will feel it wearing off and then that will tell you it's working. I strongly feel that it will help regrow your nerves because it will slow the autoimmune attack, but at some point another autoimmune med will be need to help maintain the remission. Mayo found this to be true in case studies as well. What kind of breathing troubles did you have before? Dd you have amy during the transfusions? Thats the only thing I worry about when I finally get it (been trying for over a year now already, hopefully soon). The good thing about licorice is it is a strong antiviral med too which I think helps with autoimmune as well. Plaquenil is also anyviral and they use it for autoimmune. In china licorice is used for TB.
  19. Corina is right that is the med I was referring to. So far I would say it has worked for 25% of the people I know who took tried it. But at least the ones that it didn't work for were not in danger of lowered BP like with a BB. About 50% didn't like it's side effects and the other 25% tolerated it but didn't find much improvement. After all high heart rate is a symptom and not exactly a cause. Just like cooling a fever doesn't rid the body of an infection. Ask anyone who has bradycardia and low blood volume or blood pooling how they feel..
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