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About Chaos

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    Advanced Member
  • Birthday February 24

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  • Gender
  • Location
    New Mexico, USA
  • Interests
    When I'm "healthy": spending time with my family, reading, yoga, cooking and baking, hiking, mountain biking, swimming.

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  1. Hi! Sorry you are having to deal with all this. I started having esophageal spasms early in my disease process and when I became super ill with all this, I too noticed that every morning would be horrible and by evening I would frequently think I had turned the corner and was better, only to have it all start over again the next day. It reminded me of the movie Groundhog Day and was totally frustrating. I also experienced the challenges of trying to fall asleep when my heart would be pounding so hard and fast that it felt like it was actually rocking my body on my bed. One thing yo
  2. Hi! Sorry you are having to go thru all this. I used to have IV saline infusions 3x/week. I found them to be helpful in restoring my energy and helping keep HR down (although ironically they also lower my BP). Unfortunately for me the effects last about 24-36 hours so it eventually didn't seem to be worth the time and money involved to keep doing it. I was also worried about my veins being poked so many times but my doc didn't want to risk an infection with a port because of my immune deficiency. I found them to be most helpful when they could be infused slowly (1 l over 3 hour
  3. I have 6 of 9 of the autoantiboides Cell Trend tested for, and am "at risk" for a 7th. I have tried several of the options you have listed above and while some of them helped somewhat they were not enough to keep me working or able to function above a housebound/sometimes bed bound level. I have many of your same symptoms as well as positive tilt table tests for POTS/ NMH/OI. While my POTS symptoms started after a hysterectomy, my ME/CFS symptoms started after a viral type illness. Did you have viral titers checked? Antivirals did help me in several ways although high dose IVIG a
  4. Hi! I too have had a real challenge with exercise intolerance which is no end of frustrating since I was always very fit and exercised regularly before becoming ill. I spent three years and built up to walking 4 miles every day at a pretty fast pace when my POTS neuro kept pushing exercise. But then I couldn't do anything else for the rest of the day and I would get a ton of migraines and just generally felt terrible. It also, never got easier or made me feel better. Then I started reading the research by these folks http://www.workwellfoundation.org/ Specifically this articlehttp:/
  5. http://mdwme.blogspot.com/2013/04/dr-paul-cheneys-latest-observations.html http://cfspatientadvocate.blogspot.com/2013/04/lisa-petrisons-comments-and-notes-on-dr_23.html http://www.cortjohnson.org/blog/2014/08/25/cheney-chronicles-protocol-chronic-fatigue-syndrome/ Hi Sue, Here are some links to summary articles about VIP being used to treat symptoms of low cardiac output which Dr. Cheney believes is the cause of a lot of dysautonomia type symptoms. The first link has his actual videos if you want to watch them, or you can scroll down thru the notes to places where they mention VIP. It's in
  6. I know Paul Cheney MD has talked about VIP and it's relationship with ME/CFS patients. I'll try to find the link to the video in which he was discussing it. Given how many ME/CFS patients have associated dysautonomia, this is very interesting. Please keep us posted on what you find out.
  7. I think there are quite a few of us with reactive hypoglycemia on here. When I had a glucose tolerance test my blood sugar dropped to 36 and I had nearly all the same symptoms that I had after my TTT where my BP dropped to 30s/20s. It was amazing to me how my body reacted in the aftermath of those 2 events in almost the exact same way, so I think Science Girl is right that it's the interaction of the glucose and the neurotransmitters that is the cause of a lot of our symptoms. Jerry, a standard glucose level on a regular blood test may not tell you much related to this problem. You would ne
  8. Potsticker63- the 14% was referring to a study done on different antibodies at Mayo. It was not in reference to this study at Oklahoma and Vanderbilt.
  9. POTLUCK- I don't know which specific test he was referring to that came back with a 14% prevalence but these are the antibody tests that I had run at Mayo recently. When I was at Cleveland Clinic a few years ago, they ordered some of these same antibody tests and sent them to Mayo so it seems you can have them drawn elsewhere and sent there. Neuronal (V-G) K+ channel Ab AGNA,1 Serum AChR Ganglionic Neuronal Ab S CRMP-5, Serum PCA 2, Serum ANNA-3, Serum PCA-Tr, Serum GAD 65 Ab Striat Muscle Ab PCA-1, Serum
  10. Potluck- When I was talking to my POTS neuro about this, he was saying that at Mayo when they found the antibodies that they found which are associated with POTS, they found them in 14% of the patients and that was thought to be a HIGH frequency of occurance. Sounds like a lot of the neurologists aren't taking this new study too seriously at this point for the reason you mentioned- the fact that they found the antibodies in 100% of the patients. I'm hoping the bigger study will shed more light on the issue either way. For some reason, I seem to remember reading somewhere that they think a
  11. It's interesting because I was just reading an article yesterday by a local MD who was a certified midwife/herbalist before she went to med school. She said magnesium and butterburr are the two things that have been shown in randomized, placedbo controlled, double-blind scientific studies to go head-to-head as being just as effective as prescription meds for preventing migraines. I know in the ME/CFS community the docs are all talking about how their patients are consistently low in magnesium and even if their serum levels are ok, the amount in the cells is not. However, the way to best addr
  12. Instead of an abdominal binder I use the "foundation garments" (something along the lines of spanx but cheaper). They help with warmth as well as the blood pooling issues and are more comfortable in my opinion than a binder. May not provide quite as much support though so a binder may be better in that regard. If you search this forum for the topic you might find some good ideas of places to order stockings from as there have been other discussions on this as well.
  13. You certainly have worked diligently with your research. Funny how the things that frequently come up first, keep coming up time and again. Hope you get your answers! Best wishes!
  14. I get this (throbbing pain) associated with my migraines, but at other times it flares up and causes that "zinging" nerve pain (like when you hit your funny bone) at the base of my skull. Prior to starting Topomax (topirimate) my POTS neuro suggested seeing a pain specialist and having him do an occipital nerve injection. Worked great for me as far as helping with the zingy pain. Migraines didn't change a lot so we ended up starting topomax and I don't get the occipital pain as much.
  15. I believe most of the studies are showing that people with MCAD don't have elevated tryptase levels. Usually that is just found in people with systemic mastocytosis. If you read thru this paper that Alex posted https://www.novapublishers.com/catalog/product_info.php?products_id=42603 by Dr. Afrin it discusses (in the first several pages) what they are finding about tryptase levels in MCAD patients. The NyQuil, being over the counter, you could probably quit on your own, but you might want to check with your doc before stopping the Singular. You might want to check the half life of those meds
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