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About RichGotsPots

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  • Birthday 03/31/1978

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  1. Another thing that is not talked about as much as it should be is baseline temperature readings in various dysautonomias especially with autonomic neuropathy. I believe many of us have lower baseline temperatures and we do not present with high fevers when we should and infection diagnosis is being delayed. At least that happens with me and I have seen it discussed in other illnesses where they have dysautonomia.
  2. I will probably do a follow up to see if people know how many beats it increases theirs on average.
  3. Over the decade I have had Dysautonomias I have always had at least a 30 beats increase in my heart rate and I have never once seen a study about it. I have Sjogren’s Syndrome but it is believed I also have Mitochondrial Disease. Around 38% of Mito patients have an autoimmune disease so it is not that uncommon and over 60% have dysautonomia. If you look at MitoAction website they doctors talk how their Mito Patients react to infections and their dysautonomia symptoms. It is common for Mito Patients to have a Systematic Inflammatory Response to infections where their heart rate and blood pressure either increase or decrease. Also they talk about how dysautonomia impairs being able to get an accurate body temperature. I almost never have a high temperature even with my worst proven infections.
  4. I saw people talking about Dr. Triviano. Have you have any experience with him? I might give him a try. He is near Tampa I think.
  5. Hi guys I am a POTS veteran at this point unfortunately. I have been in this forum since 2011 and my POTs started back in 2006. I had a lucky bit of a remission for 4-5 years until it came roaring back. Coincidentally my POTS also started on a treadmill. It started with breathing trouble. While there are many “triggers” with dysautonomia they rarely are the true cause. The true cause is 1000% worth finding because there is always a possibility that leads to a recovery. For example people with diabetes can get bad Orthostatic Hypotension, it is well documented. And Harvard did a study and found that if those people had tight control of their insulin for 1 years their Hypotension went away. So in some cases the Autonomic nerves go back to normal. I run large groups for several causes one of the largest by far is autoimmune. Virtually any autoimmune disease can cause any type of dysautonomia. I suspect about 15% of dysautomia people have a separate primary autoimmune condition, maybe more. And that about 30% of all dysautonomia people have autoimmune dysautonomia. The reason for 50% less is because about half of all people who have 1 autoimmune condition have 2 or more. Those number very well could be switched the other way. Autoimmune illness has those same triggers as most dysautonomia site like previous infections or surgery’s. Things like that. Virtually any illness or disease can cause Dysautonomia along with injuries, surgeries, chemical toxicities, ect...
  6. How did that Dr. Pandit go? I’m looking for a doctor in south Florida myself. Going through a major crisis with my heart rate and breathing problems
  7. Hiya Shane, any updateds on your condition? Also did they tell you any details about your syautonomia besides pots?
  8. It sounds like what you are describing is Gastroparesis. You need to see a Gastroparesis specialist and not just a regular GI. You could have an inert colon which could lead to a bowel onbstruction. That needs to be monitored very carefully and I suggest to get a smart motility pill to test your whole digestive tract and not just your stomach emptying. i won't advice you what can help because this is a delicate situation that needs careful monitoring
  9. Dysautonomia is associated more with fatigue rather than weakness. But there are many causes of Dysautonomia which involve weakness. The first thing you need to do is get an EMG done by a Neurologist specializing in Neuropathy. If your EMG is normal then you need extensive bloodwork looking for different types of anemia, hormonal imbalances, an autoimmune Dysautonomia panel sent to the Mayo Clinic to look for paraneoplastic syndrome especially. And lastly if all that is normal I would see a Mitochondrial Disease specialist and get a Whole Exome and Genome blood test and possible muscle biopsy. Mitochondrial are bacteria that live in symbiosis with humans and manufacture all of our energy for us. good luck
  10. I have Sjogren's Syndrome, Hyperadrenergic POTS, IST, autonomic Neuropathy and Delayed Orthostatic Hypotension. the only thing that matches a symptom of Sjogren's that you mentioned was dry eyes. You need other things for a diagnosis. Also keep in mind half of almost all Autoimmune illness patients are seronegative, which means they have not positive antibodies at all, not the antibodies for their particular illness which is SSA or SSB for Sjogren's and usually not high ANA. Many doctor will stop looking when a patient is seronegative and that is a big mistake. In Sjogren's if your SSA or SSb is negative then the next step is to get a lip biopsy by someone who does a lot of lip biopsies for Sjogren's. If done wrong not enough nodes are taken and also it can cause permanent damage. So be careful if you do that. I had a positive lip biopsy. I also recommend you call the sjogren's foundation and ask for a referral don't just go to any rheumatologist. The other test if you lip biopsy is positive is salivary nuclear scan. Also if you have dry mouth is another symptom. its important to mention that your parasympathetic nervous system controls your tears and saliva. So you could just have a dysautonomia causing that. And an abnormal Valsalva means your parasympathetic system is messed up. as far as temperatures issues they could be hormonal like thyroid and other things or you could have autonomic Neuropathy or Mitochondrial. High white blood cell count means either Allergies (even mast cell), parasite, Autoimmune or infection. In healthy people it usually means infections. In sick people it's trickier.
  11. That's a good point. Not much research on this subject at all. It never fails to amaze me by the lack of research in Dysautonomia in general. Such a simple thing to compare active HR and autonomic labs don't do it. Students could do this research. Another thing I'd like people to test is how long it take their HR to slow down. So they walk on a treadmill and get their HR to 150 and then slow down a minute. Get off the treadmill and lay down flat. How long will your HR return to that low resting HR? Laying HR: 90-108 Sitting HR: 110-125 Stand HR: 135-155 Walking HR: 150-165 if I walked for 5 minutes straight and my HR went up to 165-175 range and then I sat down one min and then laid down it would take hours before my HR was 108 or less
  12. It shouldn't be a second line option to add a biologic or immunosuppressive with IVIG it should be done as a first line. Many years back Mayo Clinic published a group of 8 AAG case studies half seropositive and half seronegative and they said the best results came from combining IVIG with a biologic or Plasmapharesis with a biologic. As a side note many POTS patients in Australia, Canada and some in America are reporting significant improvement with low doses of just IVIG. This needs to be studied. Many who get the low dose IVIG also report no change or only minor improvement. If subset of POTS was caused by Autoimmune factors like receptor antibodies then low dose IVIG should not be improving symptoms. If patients are low blood volume then lose doses likewise should not increase volume significantly more than an IV saline bag. So something else is at work here that needs more research..
  13. 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.
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