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Everything posted by RichGotsPots

  1. I can't believe it is the summer of 2017 and we have no results from that study. Hundreds of Thousands if not millions $$$ were raised for that research and hundreds donated free sample for it.
  2. Not a company it is a doctor at Oklahoma University in tandem with Vanderbilt. I believe it is delayed because they mishandled the samples, but not sure
  3. I saw a document from one of the Mitochondrial foundation pages where a doc said that patients with mito who had Dysautonomia tolerated sub q better. To my knowledge that is the first time I ever heard that. CIDP doctors don't even pay attention to that. But you are the second person I know with Autoimmune Dysautonomia who failed Sub q
  4. Did you ever start PlEX? Mayo published cases studies for AAG and said they think IVIG are basically equal, but that the key was a combo therapy of either of those with a powerful immunosuppressive drug. Because I know roughly 400+ patients who get IVIG, PLEX and Rituximab, I can tell you CIDP patients are the most comparable to AAG and they actually do well on SCIG, but if they don't do well on IVIG or SCIG they do best where they alternated between IVIG and PLEX all in the same week
  5. Sometimes doctors do not check though enough (meaning they don't run all the proper testing) to make a diagnosis and they that causes us to rule out illnesses as our cause. For example you said," huge panel of tests (looked for autoimmune, paraneoplastic, organic acids, mitochondrial disease)." Which sounds to me like they did blood work/panel because there is a paraneopplastic and autoimmune dysautonomia panel at Mayo Clinic that they would send the "panel" to. The only thing that panel and any other blood work would confirm is Paraneoplastic syndrome. 50% of Autoimmune patients are seronegative for most types of autoimmune illness and the main one that panel looks for is Autoimmune Autonomic Gangliopathy (which is very rare and also 50% are negative with it). So blood work can never rule out autoimmune illness. That same is true for Mitochondrial Disease. There are over 50 types of Mitochondrial diseases and only a few rare ones can be picked up with different special blood work that only a Mitochondrial doctor would know how to order. All the other 40+ types use blood tests but only as part of the whole picture. Mitochondrial disease can only be diagnosed with a muscle biopsy or whole exome/genome genetic testing (cost $20,000) and only a Mitochondrial doctor would be able to get it approved. A routine muscle biopsy would look for Mitochondrial disease. From what you described a few thing match up to Mitochondrial disease such as slow recovery after getting sick from something. About 80% of Mitochondrial patients have dysautonomia, but a very low % of dysautonomia patient have Mitochondrial disease. Also a few adult Mitochondrial patients have both autoimmune disease and secondary Mitochondrial disease. There is no treatment as of yet for Mitochondrial disease but a few are in the pipeline doing trials now. But it's crucial to get the diagnosis more for avoiding certain meds and things that could make it worse like anesthesia, certain antibiotics, Ringers Lactate, etc... if I were you I would contact the United Mitochondrial Foundation and ask for a referral to a specialist near you. And I would see a top Rheumatologist at a teaching hospital to test you further for Autoimmune. Good luck
  6. I saw new research at Harvard that proved that colloidal siver when combined with antibiotics killed 10,000x more infectious bacteria then either alone
  7. Dr. Roy Freeman did a study on diabetic dysautonomia and he found with controling insulin for a year it heals..
  8. I run the NJ and PA pots group and many parents say good things about him
  9. Lots of possibilities. One is mitochondrial disease, causes weakness, and is sometimes due to lactic acid build up. Another is mysthenia. It can cause pots and muscle weakness. There are other neuro muscular illness that can cause large fiber neuropathy as well. An emg will help dx that. I have this and my emg is always normal. So now I am looking hard into mito disease which can be dx with muscle biopsy and sometimes genetic whole exome and genome testing. Lastly a lot of illness that can cause dysautonomia can cause fatigue like Sjogren's syndrome or other autoimmune illness, lyme or other infectious disease, diabetes or other hormonal illnesses or you get my point..
  10. Issie, not sure what you are getting at with your update.. What is your vit d level?
  11. Contact the united mitochondrial foundation for a physician who specializes in mito disease.
  12. How much are you taking? Maybe you need to be on a higher dose
  13. I am also in on IVIG, it is not a cure. You want to be in a relationship with someone who will understand what you are going through and support you, not abandon you when the going gets tough. So it is actually a blessing to meet someone while you are sick and see how they act..
  14. some antibiotics antiinflammatory and autoimmune meds.. how are you feeling now?
  15. I run a NY & NJ POTS group and have heard some negative comments about some of the doctors mentioned. If there some way we could get a rating system in place for them or reviewss?
  16. Hey Sean, First off cool that you have a doc. While I appreciate all our Dysautonomia experts you still need to take all advice with a grain of salt. I think part of even mainstream medicine is the placebo effect. Your doc sound pretty good, but still take it will some salt. I think bb are a great first line. From what I know Particially do to genetics and partially do to the variability of which area of your autonomic nervous system is most dysfunctional. BB though like most meds that low your HR will also lower you BP which is another reason for fatigue I saw you are on ivabradine and I personally think that is the best one to start with. My next sugggestion is seeing the top rheumatologist you can get into. chemali would be great too. Eds, chairi, lyme, hormonal and a ton more not related to autoimmune. But there are many with different autoimmune illnesses who develop pots or other Dysautonomias.. message me if you have any specific questions..
  17. Nice another guy! IMO sounds like you have pots, but on the tilt table test did you actually get the results and see what your BP does because there is hyperadreneric pots and there is labile pots and there Orthostatic hypotension pots and there is just regular bp pots. Also what I recommend is getting a hr wrist tracker like miofuse or fitbit or apple watch. Its continuous and easier to see whats happening after everything like eating, ect...
  18. Did you ever move? I have wondered about barometric pressure. Higher elevation raised certain regional blood pressure like in the lungs..
  19. This could be interesting and useful for our illnesses because a lot of use have sweating dysfunction as a result of our autonomic dysfunction.. They should test it on us...but probably won't. Wish our medical researched looked into devices like tese for us. I guess we will have to wait for them to be consumer available and buy them ourselves..
  20. Again if it seems like I am against trying exercise then that is a misunderstanding of what I am saying. The point is how the research is presented, It's presented as a "cure" and a high "cure rate." For each individual like Firewatcher who has a great improvement, to them it's 100% rate. But in reality it's not nearly at that rate. If it is a much lower rate but the medical community and the patient and thier families are lead to believe its a much higher rate then it actually is, that is a HUGE disservice to all the people not helped by exercise. Now take the 71% who were not helped by exercise in that study, the 59% who could not complete it because of complications and the 29% who completed it but who didn't improve. They are the majority, but doctors and family will treat them as doing the program wrong, being lazy, crazy, or some other thing that is unfair. The most important point to take away is what were all the complications that were soooooooo bad people needed to stop the protocol completely. Did they end up being hospitalized, did they have heart attacks, did they catch infections by weakening their immune system. What happened? What other illness did these people have like EDS, MITO, CFS, Fibro, Autoimmune Illness, Lyme Disease, Mast Cell Activation, ect... To me that is even more important because maybe those group should never ever attempt an exercise protocol.
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