For anyone who can't find a diagnosis: Undiagnosed Disease Network

Ah yes, it took a while, but I did apply and they looked at my medical profile. They said about a dozen doctors looked through it.

They said that it seems as if it was an autoimmune disorder so I should check out a Rheumatologist. It definitely set me on the right track.

One MRI later and we found a mass inside my sinus cavity. Turns out it was leaking odd bacterial strains down my throat and threw off my entire gut flora. So one surgery later and a Low FODMAP diet plan and things seem to be getting better.

Had to get in touch with a functional medicine doctor in order to see any improvement tho. No amount of antibiotics, steroids, or pills were working. Sorry it took so long to get back to you.

Wow that’s quite a story and you’ve been through a lot! Please take care and keep in touch with me!

@amandaburnette, thanks for the reply. Glad to know that helped and you are on your way to improvement! Were you actually evaluated by the UDN team, in person? Or did they just consult and suggest the rheumatologist? Did they recommend Functional Medicine or did you decide that on your own? Also, which team of UDN specialists were you working with?
Just as a side note, I was trying to get in with the Duke Medicine UDN group. I had been seen in several specialty clinics at Duke, so decided to ask one of those providers for the referral letter. They turned me DOWN! Actually I thought their excuses were pretty flimsy, so I suspected it was ego-driven in part. I could be wrong, but I certainly did fit the criteria.

I was evaluated by them, however it was not in person.

A team of doctors got together and looked over all my medical records. They wanted me to get in touch with a Rheumatologist and get back to them. However, the Rheumatologist just said, what do you want me to do? Wish you better?" and promptly scheduled me for a follow-up appointment. I could not cancel that appointment fast enough. but she also told me to see an endocrinologist. The Endocrinologist suspected a pituitary gland disorder and had me do an MRI. The MRI came up with a mass in my sinus cavity and I went to see an ENT from there. The ENT said that the mass was "highly unusual" and the surgery took about 2 hours longer than he had expected. He then disposed of the mass (which we had agreed beforehand to keep and store for further testing). Turns out, the hospital said that proper proceedure for something unsual is to store it. So I got lucky and they stored it against the doctors wishes. (My health was still bad, so I decided to look for another doctor, and a friend suggested I look into a doctor she had that cures odd/bizarre illnesses.)

From that, I got some culture samples and microscope slides from the mass. I ran it through an in depth microbiome test and found some rare bacteria in there as well as the medications they are resistant to. I was then told by my ENT after one last followup that the mass had been leaking down the back of my throat (which explained my horribly bad breath). And my new doctor surmised that those bacterias were wrecking havoc on my gut. Had to get a stool and gut flora test and it turns out that the cultures leaking into my gut not only thrived, but also served as great food for some of the local bad/good bacteria living in my gut too, causing some to either overgrow or die off entirely. So now my gut flora biome is out of balance and is eating away at the membranes of my intestinal wall, causing toxins to flow freely into my blood stream. This is causing all sorts of autoimmune responses, and is causing me to become deficient on vitamins, electrolytes, and minerals super easy and is causing me to just as easily overdose on them. It's been a percarious balance to say the least. And I have had to guage what amounts of vitamins, electrolytes, minerals, and even water I consume down to the milligram to keep my body in homeostasis. For instance, if I have more than 1000mgs of sodium in a day, I suffer sodium overdose symptoms for about 4 days. Or if I eat half a banana, my muscles, joints, and stomach will start to hurt badly and start to fall apart. I eat roughly the equivalent of 1 meal a day. And I can only drink 1 specific brand of water at about 2 bottles per day, because the alkalis or electrolytes in the water will give me symptoms. But even just adding water to my body chemistry can throw it off too if I'm not careful. Even baths have to be taken with some care.

All I can say is, I wouldn't have gotten this far if I hadn't payed attention in my microbiology 101 class.

But yeah. I was working with the UDN at the University of Utah. They said for me to come back if the data from the rheumatologist came up nil. But I have since found progress with my Functional Medicine doctor.

Sounds very similar to what I’m going through but vax started it and then caught COVID last December and have never recovered and getting worse by each day. I too have dehydration and sensitivity to everything even water any supplements and was diagnosed with Mcas and my gut is in so much pain it feels as if it is detaching itself along with my muscles, ligaments nerves dying and such severe muscle cramps, spasms , twitching, severe weakness.. numbness tingling in limbs and in face ,severe joint pain , headache, rashes, breathing difficulties, brain issues,lymph’s and gland’s constantly swollen and hard as rock. Muscles feel like they are going to squeeze me to death. Eyes on fire , eyelids red and swollen, Dry mouth. I did do a few tests of my own and very had high arsenic levels, cesium, thallium and robidium. I did a mold panel because I was also exposed to mold and they came back positive. I could probably go on and on hope this even makes sense for I feel brain dead.Also I do feel I have connective tissue disease and have thyroid disease and stage 3 kidney disease.

Sounds very similar to what I’m going through but vax started it and then caught COVID last December and have never recovered and getting worse by each day. I too have dehydration and sensitivity to everything even water any supplements and was diagnosed with Mcas and my gut is in so much pain it feels as if it is detaching itself along with my muscles, ligaments nerves dying and such severe muscle cramps, spasms , twitching, severe weakness.. numbness tingling in limbs and in face ,severe joint pain , headache, rashes, breathing difficulties, brain issues,lymph’s and gland’s constantly swollen and hard as rock. Muscles feel like they are going to squeeze me to death. Eyes on fire , eyelids red and swollen, Dry mouth. I did do a few tests of my own and very had high arsenic levels, cesium, thallium and robidium. I did a mold panel because I was also exposed to mold and they came back positive. I could probably go on and on hope this even makes sense for I feel brain dead.Also I do feel I have connective tissue disease and have thyroid disease and stage 3 kidney disease.

Hello all. I’ve been ill for over 13 years with no definitive diagnosis just bizarre symptoms. So severe at times I was awarded disability. In 2018 I decided to go 100% gluten free after my 23andMe report indicated I had one gene for likely developing Celiac. After have an endoscopy the biopsy was negative. But I continued the gluten free and felt so much better without intermittent flareups. After much more research I have discovered it’s not just wheat/rye/barley but GMO’s that has done this to my body. Makes sense because gluten free doesn’t contain GMO’s.