• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Newbie needing help

Messages
12
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
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
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.
 
Messages
12
All the broken links on these pages are so frustrating! Server not found, page not found. Argh. Neither co-cure link works.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
All the broken links on these pages are so frustrating! Server not found, page not found. Argh. Neither co-cure link works.
@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.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia