Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Unexplained Hypersensitivity to Life

Discussion in 'General ME/CFS Discussion' started by Rizz, Nov 18, 2017.

  1. Rizz

    Rizz

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    Hello all, this is my first post on this beautiful website that I have been lurking on for about a year now. Just wanted to toss out a broad spectrum thank you to everyone for their in depth info as well as contributing to a sense of community that is very uncommon, especially on the internet. Also excuse me for any errors, I am the farthest thing from an expert in this field, and my brain is chugging on fumes lol. Now for my strange situation..

    About 3 years ago at age 16 i developed severe intolerances to food overnight. I had always had stomach aches, headaches, etc from food (wheat, dairy, soy, spicy foods) but this was different. One night eating dinner i became short of breath to the point where i almost fainted into my bowl of pasta. Since then I developed unrelenting acid reflux, and regurgitated most foods right up.

    Then i went to see my lyme doc who diagnosed me with babesia, and put me on 500mg azithro and malarone (if memory serves me well). Along with abx, I changed my diet to all organic (eventually paleo) and immediately gerd and SOB disappeared. After being on it for a month, even while taking a probiotic (probifida), i started getting severe stomach pain at work and during my baseball games to the point where i had to come off of abx. Instantly all my symptoms came back at 1000% (developed resistance?) and my life has been hell ever since.

    During this span of time I have learned that my genes (low glutathione, DAO insufficiency, mold susceptibility) combined with food sensitivities, extremely low secretory igA ,working in a metal shop, having heavy metals (oh the irony!) and glyphosate toxicity living in a moldy, radon infested home, and dealing with stress from family life (2 other sick family members) have led to my decline.

    For awhile my docs got my gut back in check with xifaxan which got rid of my suspected sibo, while adding zinc, sialic acid, hcl and enzymes, fish oil, vitamin d, supplemental testosterone (mine was in 200's). We were about to tackle mold w/ binders when me and my mom stupidly pushed for abx to kill the lyme, since it worked so well in the past. After a month on abx in june while not taking probiotics except sacc boulardii, i developed severe shortness of breath, fatigue, brain fog, gerd, and severe severe food sensitivites. I was told the SOB was babesia die off so i stuck it out..

    I have since moved out of my moldy house into my grandparents. I saw a little improvement but my gerd hadnt stopped so im currently on TPN 1950 calories. About a month ago i developed hypersensitivity to life itself (emf, most buildings, showers, fragrances, virtually all foods, etc). Now, everything i put on my skin, along with almost every single food and drink i put on my damn tongue, let alone traveling down my chute, gives me SEVERE shortness of breath to the point where i feel like im dying from lack of oxygen 24/7.

    I can only have starkey water, sweet potatoes, squash, celery, carrots, cod, and bone broth along with enzymes, and these all still bother me, but theyre tolerable. All other foods and supplements give me horrible dyspnea, and i cant be treated bc i cant take anything, such as binders. I am sensitive to this house now too, so i am forced to eat outside so i can finish a meal without suffocating. Im at a complete loss (but very hopeful, dont know why). I can only do energy work now, such as acupuncture and NAET, but i know alone they cannot save me. Im not looking for advice, (but if you have any that would kick ass!) im mostly looking for comfort/assurance of future health.

    THANK YOU AND GOD BLESS
     
    Last edited by a moderator: Nov 18, 2017
  2. Diwi9

    Diwi9 Senior Member

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    @Rizz - Welcome to PR! Your digestive issues sound intolerable. Have you been checked out for gastroparesis (via a gastric emptying scan)? It is one reason why some people with ME/CFS are on feeding tubes. Some people have feeding tubes placed that bypass the stomach and go straight into the small intestine, others are able to tolerate liquid feed into their stomach. I only mention this because I have bouts of gastroparesis and experience shortness of breath when I do.
     
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  3. Cheesus

    Cheesus Senior Member

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    Perhaps look into helminthic therapy. Some people find it very effective for food intolerance.
     
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  4. knackers323

    knackers323 Senior Member

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    Im only just learning about it myself but maybe a mast cell disorder?
     
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  5. Plum

    Plum Senior Member

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    I'd second MCAS - helpful groups on FB. Lots of people with similar stories.
     
  6. Rizz

    Rizz

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    Helminthic therapy is some heavy duty stuff, holy cow. I will keep that in mind as a last resort but im so immunocompromised i dont know if it would kill me or help me haha, thank you though!
     
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  7. Rizz

    Rizz

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    Oh i know for a fact i have mcas but the trouble is, i react to all medication and supplements, even transdermal LDN gives me SOB, God only knows how. Ty
     
    Countrygirl likes this.
  8. Rizz

    Rizz

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    Oooh you hit the nail on the head i do have gastroparesis. I was diagnosed via smart pill and my transit time gastric emtpying time was somewhere around 3.5-4 hrs if i remember correctly.. But i believe this is do to low stomach acid and hypothyroidism from sibo and other gut bugs which im too weak to treat currently
     
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  9. mrquasar

    mrquasar Senior Member

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    @Gingergrrl This sounds like MCAS, right? When I read this post, I immediately thought of you. Hopefully you can give our new member some good advice on this.
     
    Countrygirl likes this.
  10. Rlman

    Rlman Senior Member

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    @Rizz maybe Dynamic Neural Retraining System would be of help? seems to help people who have lots of sensitivities. idk if it always works but just wanted to let you know about it in case it could be of help.
     
  11. Rizz

    Rizz

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    Funny you mentioned it, I’m currently doing DNRS haha. First 3 days I was diligent with practice and I noticed less anxiety, and slight, slight improvement with sensitivities. Since then I have been dealing with family issues, and they kind of negated the progress from Dnrs, and I haven’t been doing it daily. Thanks for the suggestion, I believe if i follow the program correctly it will be of huge benefit, and I was very very reluctant to try it at first
     
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  12. Rlman

    Rlman Senior Member

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    have you seen their testimonials? they are quite amazing!
     
  13. Rizz

    Rizz

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    Bro they are insane! Takes a lot of the pressure off knowing that I don’t have to clean religiously and inspect for mold, much rather retrain the brain. Who would have thought that a non invasive mechanism could have such an impact?
     
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  14. Dufresne

    Dufresne almost there...

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    I also have sensitivities to many foods, mold, lyme and babesia toxins, etc. I can also become seriously short of breath and experience burning muscles, but only in the days following stimulant use.

    Babesia seems to be my main foe. Dr Shoemaker talks about this bug's ability to drive biotoxin illness. And biotoxin illness (from infections or mold) can drive MCAS and/or reactivity.

    Sensitivities is what I fear most with this disease, so I sympathize with you. I'm convinced there's an anxiety component to their development. I only wish I could tolerate more of the limbic retraining exercises. Most aggravate the energy problem at the core of my illness. Keep us posted on how the DNRS works for you.
     
  15. Rizz

    Rizz

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    When I do it religiously, it helps. I’m sure I will continue to see the benefits as time goes on. Yes, babesia is a nasty one, along with biotoxin illness. I’m rooting for ya buddy.

    Just wondering, how do the retraining excercises affect you?

    Anxiety is a huge component. I used to not have it, but now it rears it’s head around more frequently. DNRS helps immensely with that. Hope you can slowly work up to doing it as well!
     
  16. Dufresne

    Dufresne almost there...

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    There are several "gentle treatments" I just can't do: reiki, meditation, acupuncture, EFT, etc. I can't even plug in my Himalayan salt lamp, or plug myself into the ground in the middle of nowhere (earthing). All of these things will cause me to feel calmer and better for a short time, but then it's followed by excitability. It's an unsustainable energy and if I keep it up I become very depressed within a couple days. The energy problem at the core of my disease won't allow me to feel better. I speculate that feeling better is a higher energy and there's a regulatory mechanism in the cell that won't allow this to happen. I don't know what to do with this so I just continue on with my rotation diet, avoidance of toxic environments, and aggressive treatment for Lyme and babesia.

    I believe this energy problem is the result of reactivity. And this leads to anxiety (among other things) which I think leads to the development of further sensitivities. A really hard trap to extricate oneself from.
     
  17. Rizz

    Rizz

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    I totally agree..it’s a difficult process. I have the issue of overthinking things , or concentrating on symptoms, and this leads to further anxiety and worry. Right now I’m trying to quit research, and just live in the now. Annie Hopper says when we are in a maladaptive stress response, we are only concerned with “our body, the environment, and time” I don’t know if you got that far.

    I don’t know what to say as far as your energy problem. That’s tough. The only advice I can give is to try and get rid of sentences like “...won’t allow me to get better”. I sincerely get where you’re coming from, but putting those words out there can be detrimental to ones healing. It’s so hard, please know I’m not judging, just trying to help. I say the same things, but I know if I stop, it will contribute to my healing. When I say something that isn’t very hopeful, I can actually feel my symptoms exacerbate.

    I went to my NAET recently and she said I tested well for kava kava and cbd oil, so I’m going to give them a go soon. Also trying to get medicinal, once the CT scan on my lungs come back normal. Can you do anything for anxiety? Epsom salt baths, or foot soaks? Even deep breathing helps.

    Whatcha on to treat Lyme/babs? Does the treatment help?

    There is a somewhat “underground” type of healing that I came across of recently. A chiropractor reached out to me after seeing my story in the paper and I just met with him the other day. It’s called amino neuro frequency therapy. He put discs (stickers) that have embedded frequencies on my skin. Most of them caused SOB for me, but I was amazed when he put one for medical cannabis on my left temple. INSTANTANEOUS WIDESPREAD RELAXATION. Felt like the real thing, I was amazed. Then he put some others on my head (I’m walking around with them on haha) and glutathione on my sternum. Equally amazing. The rest of them negated my positive experience sadly, made my sob much worse. Too much on my body at once. I always get a taste of greatness, and it’s aIways taken from me immediately, dang it. I’m going back tomorrow to get my “oil changed”. Discs last 3 days. There is literally a disc for everything it seems. Maybe you could try it, depending on where ya live.

    Hope this helps!
     

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