New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Newbie needing help

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Jifmomto8+1, Jul 20, 2015.

  1. Jifmomto8+1

    Jifmomto8+1

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    Jifmomto8+1


    Hello all. I am a newbie with a very sick hubby. He began having trouble 11 yrs or so ago with seemingly random itching only on the tops of his feet or he would get one little hive next to his belly button, just periodically, more especially when he traveled to Mexico on frequent business trips.

    After we moved to Kansas almost 7 years ago, things began to escalate. More frequent hives and started wheezing. Had allergy testing done and only a dog allergy showed up. Well I had already determined that he reacted strongly to vinegar and garlic. Doc says well you can't be allergic to vinegar. So helpful.

    He now reacts to most any strong smell, natural or chemical. He reacts to dust, dogs, grass, nuts, citrus, sulfates, shellfish, rosemary, basil, cinnamon, gluten, acetates, iodine, a whole host of medicines etc. In addition diagnosed with IBS. Pretty sure he has MCS/MCAS.

    March 2014 he hit his head after apparently passing out in the bathroom. He got a concussion. MRI and EKG, blood work all normal. Since then he has steadily lost cognitive function, has severe ongoing headaches and begun having what appears to be complex partial seizures, EEG normal. He lost his job last August. Thank the Lord for long term disability insurance, but what a pain to get it approved! We went 5 months with 0 income, and we have 8 kids!

    Next month he has an appointment with a different allergist and a follow-up with the neurologist about the seizure type events. My question is what tests should we ask for? We need to prove disability to SSA or lose our private insurance in one year.

    We are testing our home for stachybotris, as there is visible mold in our leaky basement. But VCS screening test showed issues only with nutritional status not biotoxin. Some of the kids have developed food intolerances, panic attacks, stuttering, and more since moving here as well.

    Thanks for your time and help. I've learned a lot reading through the forums already.
    Jen
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    What a nightmare.

    Can you find an environmental medicine doc? I think if you google there is a website for them

    You might have to travel but might be worth it.
     
    sarah darwins likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
  4. Jifmomto8+1

    Jifmomto8+1

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    I was just looking @ those. Anybody ever heard of Donald James M. D. or Peter Seberger Ph. D., M. D.?
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I missed where you are located but I have an environmental doc if you are anywhere in So. California?
     
    AndyPandy likes this.
  6. Jifmomto8+1

    Jifmomto8+1

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    We're in Kansas. Thanks though.
     
    Gingergrrl likes this.
  7. sarah darwins

    sarah darwins I told you I was ill

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    Valentijn likes this.
  8. Jifmomto8+1

    Jifmomto8+1

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    Hmm. Sounds like they saw Dr. Jones and weren't too thrilled. Guess I will try the other one 1st.
     
  9. Jifmomto8+1

    Jifmomto8+1

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    All the broken links on these pages are so frustrating! Server not found, page not found. Argh. Neither co-cure link works.
     
  10. sarah darwins

    sarah darwins I told you I was ill

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    @Jifmomto8+1 - sorry if I sent you on a wild goose chase. I hadn't tried any of the links. Dead links are a curse.

    This site (can't vouch for it) seems to have a very large database of functional/integrative doctors. You can drill down through state and city: http://fmcfsme.com/doctor_database.php?c=United States&s=Kansas#city

    Perhaps your best bet would be to find a promising looking doctor then ask on here, or other forums "Has anyone any experience as a patient of Dr. x?"

    Googling on "functional [or integrative] medicine + mcs + your location" might get you somewhere, too. Again, worth putting out a query on the forums before actually going to see anyone.

    If that gets you nowhere, another post on here with a more specific title such as "How do I find a good doctor for MCS?" might get more responses.
     
    Jifmomto8+1 likes this.
  11. Jifmomto8+1

    Jifmomto8+1

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    Thanks Sarah, it's not just here that there are broken links. If I was a conspiracy theorist, I'd think Monsanto or some such was hacking MCS sites ;)
     
    sarah darwins likes this.
  12. sarah darwins

    sarah darwins I told you I was ill

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    lol ... the really alarming thing is, I don't find that idea at all far-fetched!
     
  13. sarah darwins

    sarah darwins I told you I was ill

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    Last edited: Jul 21, 2015
  14. Jifmomto8+1

    Jifmomto8+1

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    sarah darwins likes this.
  15. ahmo

    ahmo Senior Member

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    Jifmomto8+1 likes this.
  16. Daffodil

    Daffodil Senior Member

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    @Jifmomto8+1 ..i would get husband tested for Lyme, via the LTT ELISPOT test at ARMIN Labs. they will send you a kit free.
     
    Jifmomto8+1 likes this.
  17. Jifmomto8+1

    Jifmomto8+1

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    Ahmo that mastcellblog article was extremely interesting. CNS histamine receptor sites. Hmm.
     

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