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About KiminOrlando

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  1. Exactly! I started breaking out in a rash and my lips and tongue started swelling. This was the turning point for me. Each specialist said it was the other's responsibility. I went to a dermatologist and had the rash biopsied so that we would know if it was autoimmune or allergic. It was neither, which is how I got kicked back to the Immunologist. You are likely going to have to go through a lot of doctors. I know what you mean about not having the energy. I didn't get serious about mine until my lips and tongue started swelling. I wish you luck.
  2. It is worth going through the referral process. They will likely redo all allergy testing because they cannot believe it isn't allergies. Then they will test environmental allergens. Then chemical allergens, then the big allergy test. I have been scratched and/or stuck with about 300 items (maybe more) before I got to this point, but it was worth it. I breathe better when I sleep. I sleep better. I can't say enough about how much this helped me. Your's may really be allergies, but mine seems to be some kind of undefined mast cell issue. It will be interesting how he classifies it for insurance
  3. I was put on an H1 (Xyzal) and a prescription H2. They decided it wasn't enough and I may have mast cell 'issues' but didn't call it MCAS or MCAD. They put me on Singulair (pills), Quercetin, and low does Naltrexone and my problem is gone. I'm breathing better too. I went to an Allergy and Immunologist for this. They did extensive allergy testing before they tried these drugs. Hope you are able to find help. I was having to eat with Kleenex shoved up my nose. I couldn't put makeup on because my nose was constantly running. Bending over was like turning on a faucet. I know it is miserable.
  4. You mentioned in a post taking medicine for gastroparesis. What has helped?

    1. KiminOrlando


      It changed my life and made me functional. I don't ever want to have to live without it. It isn't FDA approved, isn't covered by my insurance and has to be compounded, but it is worth it. Without it I can't eat, can't leave the house, have pernicious anemia and am in tremendous pain. Not all doctors will prescribe it. My doctor trained in the UK and they used it over there.

  5. I'm not sure about the mRNA aspect of the Moderna shot. It seems concerning that it destroys this protein. How are we to know that this protein is ALWAYS bad? Do the viral mutations make the same protein? We work differently. How do we know this won't be a problem for us? Down here it seems everyone is getting the Pfizer shot so it may not be an issue for me.
  6. Anyone here get diagnosed with Barrett's Esophagus from the acid reflux due to gastroparesis? Just had an endoscopy today and they did a biopsy because they suspect that I have it. It will take a week to get the results back from pathology so I won't know for a bit. Any advice would be appreciated. Thx.
  7. I brought this data to my Allergist and Immunologist. He started me on Singulair in addition to the H1 and H2 blocker. I'm supposed to start Quercetin 500 mg herbal supplement too. After a few weeks he wants to start LDN. He prescribed 50mg and said to quarter the pill. He said the real test for Mast Cell is to treat it and see what happens. Does this sound reasonable? I'm obviously going to do it, but was curious about the Singulair and Quercetin. Is there something else more common to try?
  8. Yes, my life is symptom management too. I think most are afraid to experiment for liability reasons. My insurance doesn't allow me to try many of the meds my doctors are willing to try. Very frustrating.
  9. The medication has helped, but I think we are only treating symptoms. I think it is more than just a histamine response with me. My blood vessels seem to overly enlarge or overly constrict with the slightest trigger. My hands are always numb and purple/black. They think it also causes spasms in my colon. The histamine blockers won't help any of that. I really think I need someone to prescribe low dose Valium, but nobody has. I don't know what else would work like that. They gave me an anti anxiety med that was also a histamine blocker, but it made my POTS so much worse. I have an appointment w
  10. For me, it looks like an over reaction of my sympathic nervous system. I am on an H1 blocker in the morning, an H2 at night, and will be starting Singulair soon. They tried Elavil but it had side effects I couldn't tolerate. It would be interesting if you could get someone to help you test this theory. I think speaking with a neurologist and an Allergy Immunologist would benefit you. They ran a ton of allergy tests to rule stuff out for me, but it helped them realize what it wasn't. Hope you find answers.
  11. I printed it out and will be highlighting different sections to take to each of my specialists. It pretty much sums me up, even the Rheumatoid-arthritis.
  12. Omeprazole won't really help until the gastroparesis is treated or you switch to a liquid diet. I take Omeprazole too, but it is with the Domperidone. Gastroparesis is so much more than acid reflux. I take Omeprazole and still take Pepcid for break through reflux.
  13. Yes, a gastro diagnosed me. He sent me for nuclear testing to eat eggs with additives that would glow with imaging. It is a very long test. There is no FDA approved med that I am aware of, but my gastroenterologist trained in the UK, so he prescribed a non-FDA approved med that has to be compounded. They use it in the UK. It has changed my life. It is called Domperidone. I think once it gets bad enough they can implant a device to help with peristalsis but when I was diagnosed it was still experimental. The meds are working for me so I haven't looked at it. I don't know anyone with one.
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