[dumbfounder]

What kind of doctor did you go to and what kinds of testing did it take? How long did it take once you figured out what was going on to get to 90% better? My neurologist seems disinterested in finding the root cause. I even had to diagnose myself and then go to several doctors until one agreed. I take migraine meds and they help a lot so far, especially Ubrelvy, but it is $100/pill and I am not sure it will be covered by insurance.

[kathysgeek]

I highly recommend reading about it at https://www.survivingmold.com/resources-for-patients/diagnos...

You can do a visual contrast sensitivity test online: https://www.survivingmold.com/store/online-vcs-screening

I have been treated by Dr Shoemaker and am currently being treated by Dr Scott McMahon who is an expert researcher in the field. Call him and set up a consultation. There is a fair amount of blood tests but your symptom history and VCS tests will go a long way toward diagnosis.

YMMV, but after initial treatment I felt 40% better in 6 months. Ensuring a clean environment is critical. It took 5+ years of treatment to reach the 90% improvement.

However, each person is unique. Younger and less genetically susceptible patients improve much quicker.

https://www.survivingmold.com/shoemaker-protocol/list-of-cer...

[notslow]

If you are concerned about mold being a cause, there are couple of urine tests for mycotoxins that were super helpful for us understanding the mysterious illness in our family.

[dumbfounder]

What kind of doctor do I go to and what are the name of the tests?

[notslow]

You need to find a functional health practitioner, and be willing to try many different practitioners. It took us several tries to find a practitioner who was willing to test for mold. If you aren't familiar, functional practitioners focus on the root cause of medical issues rather than just symptoms. We found success with a functional nurse practitioner, though they capped out and we have moved on.

There are two tests we do periodically: https://realtimelab.com https://mosaicdx.com/test/mycotox-profile/

You may be able to find ways to get the tests directly (not through a health practitioner) if that ends up being the path you need. They are not cheap and not typically covered by insurance, but we found being mysteriously ill was way more expensive in the long run than paying for tests. May your path to healing be a straight one!

[kathysgeek]

Unfortunately, urine mycotoxin testing is not diagnostically significant.

"Even if we are presented with impeccable lab results from ELISA and thorough use of standard differential diagnosis (we aren’t), based on world-wide control data, and a robust literature on CIRS, there is no basis to ascribe any diagnostic significance to urine mycotoxin testing" https://www.survivingmold.com/Publications/Urinary_mycotoxin...

However, there are significant blood tests including Transforming Growth Factor Beta-1 and Complement C4-A. https://en.wikipedia.org/wiki/TGF_beta_1 https://en.wikipedia.org/wiki/C4A

[notslow]

I recognize urine mycotoxin tests are potentially controversial, but these tests were very diagnostically significant for us and our mold journey. The mycotoxins that were off the charts in our tests matched the mold that was eventually found in our house (after multiple mold inspectors missed it).

This area is definitely more "gray" than implied by your comment. I have tremendous respect for Shoemaker, but there are some gaps in that paper that did not appear to address how our practitioner used those tests for us. Many of the studies mentioned in the meta-review focus on the presence or absence of mycotoxins not the measured amount. Also, our practitioner used the test "backwards" compared to procedure outlines in the review paper. Our practitioner used the test before we had any evidence that we lived in a water-damaged building, whereas the paper is specifically focused on determining cause of illness after exposure to a water-damaged building.

[hda111]

I thought the tests were controversial because mycotoxins is also contained in some foods. Most research papers don’t use a reference group that isn’t affected by mold.