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heathcliff

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  1. i'm considering trying LDN (low dose naltrexone) for ulcerative colitis, and can't see why it wouldn't help with POTS. has anyone else tried it here? this thread is a bit old, and i'm wanting to spark it back to life, since LDN has had so much promise for other illnesses involving inflammation of the CNS. thanks!
  2. i also have cervical stenosis and POTS. my neck issues have been with me for most of my life, but i didn't realize they were a factor in so many of my health issues until POTS symptoms became more pronounced. i recently saw a neurosurgeon who thought at least some of my POTS could be alleviated by surgery, and i agree with him. i've no doubt in my mind the two are linked. like others here, i am trying chiropractic first, changing my diet around to avoid coffee, sugar, grains, and dairy products, and trying anything to avoid surgery. i have more good days following this new diet/chiro protocol, but it hasn't kept me from getting an occasional blood pressure spike (i have the hyperadrenergic form), and even on the "good days" i suffer from a great deal of vertigo, sound and light sensitivity, and exercise intolerance. like others here i sleep poorly, because i'm keyed up on adrenaline all night, and this makes healing more difficult. so, let's be honest, this is not much quality of life, really! here it is, documented: *some* POTS suffers report being cured by surgery to correct their neck issues. do a search on this page for "cervical stenosis": http://www.dinet.org/what_causes_pots.htm would i roll the dice on an operation, even if it just cured part of what is ailing me? decisions, decisions. i wish others here who had successful neck surgery could tell their stories, but chances are they are out living life, not thinking about POTS anymore.
  3. if you think of helminthic therapy in the same way as probiotics, little bugs in your gut that were designed to be there, it makes a lot more sense. look up the "hygiene hypothesis" or the "old friends hypothesis" and you'll see what i mean. humans co-evolved with certain benign and beneficial organisms in their intestines, some which appear to modulate the immune system. take them out through some action like deworming, and suddenly you've got a world where everyone is becoming hyperallergic to foods, seasonal allergens, etc. when i first started getting symptoms of POTS, i thought it was food allergies, because i'm already allergic to quite a few things. i had ulcerative colitis, asthma, and was running out of things i could eat. after some thorough research, including talking to a medical doctor who had conducted clinical trials using hookworm, i decided to try helminthic therapy. i inoculated with 55 hookworm and 500 whipworm on april 25th, 2011. 16 weeks in, already i can tell a difference in my gut. i have had no colitis symptoms since. zero. i've also had periods of no POTS symptoms, too, although after a viral illness earlier this month, and a traumatic neck injury, some POTS symptoms have come back. i'm hoping once the helminths are giving me their longer term benefits, which could happen at any point now, i will experience a major reduction in all my allergic and inflammatory conditions. for those who are squeamish, all i can say is i have a much harder time gulping down meds like imuran, 6-mp, prednisone, etc. than a few worms. i've been given all the most harsh medications over the last decade and in every case they weakened my immunity, ultimately making me sicker than when i first took them. this is the first time since my health started spiraling downward that i am feeling real improvements.
  4. i'm doing helminthic therapy for dysautonomia, ulcerative colitis, and food allergies. you can read about it here: http://gettinghealthiernow.wordpress.com/ specifically, i did 55 hookworm (necator americanus) and 500 whipworm (trichuris trichiura). low level infections don't make the host anemic, nor do the helminths mis-migrate or multiply. it is a very safe therapy that has been tested many times in clinical trials throughout the world. i inoculated almost 17 weeks ago. so far it's controlling my IBD really well, and i have high hopes it will one day reduce my hyperadrenergic POTS symptoms.
  5. i developed ulcerative colitis about 10 years ago. along with the UC, i began to have numerous food allergies (fish, shellfish, wine, pineapple, strawberries, avocado, nuts, etc.) and reacted also to seasonal allergens. throughout this time i was having low-level POTS symptoms but didn't know what they were: mostly periods where my nose would get stuffy, my heart would race, and i'd have odd fluctuations of body temperature. i figured it was asthma, since my lungs were often affected. in the last 3 years or so, i started to have hyperadrenergic symptoms, like blood pressure spikes, but again, i didn't see the connection. i figured it was anxiety, although the source of it was mysterious. well, just a few months ago these symptoms started getting bad enough that i did some reading, and all signs pointed to hyperadrenergic POTS. i noted the connection to mast cell activation, and given my history of food allergies i decided to try a low histamine diet. so far, it seems to be helping a lot. when i deviate from the diet, i start to get "potsy" again, which includes a rise in temperature around my head and neck, but no increase in measured body temperature with a thermometer. it's like that heat (inflammation) is confined to my CNS. then my pulse and BP rise, which seems like orthostatic intolerance kicking in, and trouble with baroreceptors malfunctioning and too much adrenaline. like some here, i've experimented with taking antihistamines, like benadryl or zyrtec. both seem to work. but i get even better relief from large doses of buffered vitamin c, which is a potent antihistamine. when people here mention H2 blockers, are you referring to an antacid, like tagamet? if so, how does that seem to work for you, and how/when do you take it in relation to your meals? thanks!
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