Hi, I'm a new member to this board although I've been reading what I could as a guest for a couple of months now. Most of my life I've had allergies and intolerances. I've been described, sometimes not too kindly, as highly sensitive. Early this year I self-diagnosed Hypermobile Ehers-danlos after finding out about it from a new cousin I met.
Two years ago my health took a more serious turn for the worst after being sick with what was either a flu virus or a bacterial problem. I try to avoid over the counter medications and am frugal with even homeopathic and herbal meds because I can get overloaded easily. But I'd had a fever of 103 for days so I took one regular dose tylenol in hopes of conquering the fever and calming the aches. It did help some, but immediately I had a terrible reaction in my gut, felt flushed, sore throat, laryngitis, major acid, nausea, vomiting, etc. The severe symptoms cleared up but the acid, bloating, cramping, nausea stayed. I was diagnosed with IBS and Gerd and also treated with antibiotics for H pylori.
This was the 5th course of antibiotics in that 2 year span. It started me on a new path to learn all I could about what was happening. Everything I had always used to heal was no longer working. Probiotics caused reactions. Eating the high fiber healthy diet I formerly thought was working for me but now realize was the set up for this breakdown of my body made me sicker. I tried IBS diets, all of them made it worse. I tried Gerd diets which also made me sicker. Tried HCL and was horrible flared with severe pain and flu like symptoms, same with ACV. Then I found out about HEDS and it was the golden key.
In the EDS groups everyone kept talking about POTS and MCAD. Took me awhile but I finally understood what they were and realized I have both. I found the Low Histamine diet and the first day I tried it I was symptom free. I bought supplements and it's been hit of miss and I now understand that I was just going to fast. I'm in a group on Facebook for a trial of using pea sprouts to provide DAO and that's been good/bad. Still working on it.
I'm working on being seen by specialists. Today I see an allergist here who I found through a post from one of your members. Apparently last year he agreed to get educated about this disorder and work with her. I'm hoping he did so.
I've had to learn my own history all over again, with all this new info. I'm pretty sure my mother and a brother have this too. We all react to foods and meds in weird ways. Can't be around perfumes. We always used to joke that my mom should write a guide book locating bathrooms in stores and other venues. I've realized I live that way too. I've avoided public places all of my adult life to avoid the migraines and having to run to the bathroom to evacuate my bowels. The only thing that works by the way besides Magnesium to move my IBS-C system.
I don't have anaphylactic responses that I know of. The closest I've gotten is itchy mouth with swollen tongue and nasal passages after eating nuts. I was with a friend who knew to give me a large dose of Vit C and that calmed it. Although I was in bed for two days weak and with no energy. I thought it was an almond allergy but tests showed it wasn't. Then I reacted to walnuts later that year so thought it was them, but again, nothing on the tests. Not much ever shows up on allergy tests other than mold and dust mites. I also reacted to bee stings (2 at the same time) once with major swelling of my body and extreme anxiousness and heart palpitations. I always get that anxious and heart palpitations with body flushes with ant and bee stings but no breathing problems.
It also appears that I have a problem with Amines and Salicylates. I know I have a severe reaction to Sulfites too.
Most of my adult life I've eaten a super healthy, mostly vegan diet with only organic meats, fish and eggs on occasion, and grown my own food. I can only eat fruit if it's picked ripe from the tree or I get super anxious and can have panic attacks. I have complex ptsd so I live a relatively quiet life. So a lot of things I do normally were conducive to me living with lessened symptoms. Two years ago all of that was challenged. We had to move from where we were living, I was very ill from an extremely traumatic experience which I now know was HEDS flaring. I was living at high altitude which was challenging undiagnosed POTS and HEDS. We moved into a trailer not knowing where to move but needing to get me to better treatment we stayed in San Diego near family. So I had to eat foods from the store, plus docs had me on high nutrient, high fiber foods. I got mono, then h-pylori flared. Three courses of antibiotics. Then bacterial infections from the pool and jacuzzi I was using for what I didn't know was HEDS. and then that viral or bacterial thing. So here I am looking for more support and education. I'm already healing some with proper pt, diet, and biofeedback. Really helps knowing the correct diagnoses for things. Sorry for the length. Just want all the help so I'm giving you what I think are the important facts.