GENIE Test/CIRS

[MTRJ75]

I've heard of Dr. Shoemaker before and associated him with mold illness, but it seems his new GENIE test is a different sort of thing. James's story in this blog and how he's used it to begin recovering from severe illness is inspiring. It seems that CIRS (Chronic Inflammatory Response Syndrome) may be responsible for some of our symptoms and potentially be set off by a bacterial infection in the nasal passages (if I'm reading this right). 

I'm fairly confident nobody reading this has done this test yet, but has anyone else heard of it before this? Sounds extremely encouraging...and expensive. Of course, everything is expensive. Which would be a bit less of a problem if we absolutely knew it was going to work, but who has the funds to continually chase unsuccessful protocols? 

https://www.healthrising.org/blog/2022/06/15/chronic-fatigue-syndrome-recovery-heyman-cirs/

[MikeO]

Interesting read. Thanks for sharing.

[MTRJ75]

Looking at the survey results at the end of the post, it was really disappointing to find that only half the people who went through this protocol were satisfied with results and nearly all of them (satisfied or not) had to drop over $5K (27% dropped $20K+). 

[MikeO]

I did take the first part of the survey by criteria i have CIR but in my opinion symptoms can be all encompassing (other issues). Glad to hear the protocol works for some folks but it seems to be unproventen by trials and scientific data. I did read thru the comments and when the subject of efficacy data came up that question went crickets.

IMO this is an expensive trial that insurance won't pay for.      

[MTRJ75]

No, insurance absolutely will not and I feel it's very rare we get good, clean studies with anything having to do with our conditions, as almost all POTS medications are off label. The GENIE test itself still interests me, as the linked page to it suggests it costs around $700. Still expensive, but I wonder what directions it might lead someone in. Maybe that's the most positive thing to come out of all this, as I've been reading that a lot of the most effective medicine is moving towards individual genetics. 

[MikeO]

27 minutes ago, MTRJ75 said:

Maybe that's the most positive thing to come out of all this, as I've been reading that a lot of the most effective medicine is moving towards individual genetics. 

I did have this conversation with my Doc as well as @Sushi. Oh what is the word i am looking for pharmacogenomics testing. My Doc did say this is done for Cancer patients as well as SSRI folks. One of the reason being is to get the treatment right (genes do come into play). I know that the two predominant universities in wisconsin teach this stuff. and one has spun off a service that has offered it (pharmacogenomics testing)

[MTRJ75]

I think this is different than his mold protocol. 

[Sushi]

On 6/19/2022 at 12:59 PM, MikeO said:

Oh what is the word i am looking for pharmacogenomics testing. My Doc did say this is done for Cancer patients as well as SSRI folks. One of the reason being is to get the treatment right (genes do come into play). I know that the two predominant universities in wisconsin teach this stuff. and one has spun off a service that has offered it (pharmacogenomics testing)

For me it has been very important in prescribing medication as if you have certain mutations you will metabolize meditations differently than the norm – either requiring a higher dose or a lower dose or not able to tolerate the medication at all. It is an important safety issue and I think explains why many of us have difficulty tolerating different medications. 
@MikeOdo you know which university offers this testing?

[MikeO]

15 hours ago, Sushi said:

@MikeOdo you know which university offers this testing?

@SushiName of the company is RPRD Diagnostics https://www.rprdx.com/ it was spun off of by work done by the Medical College of Wisconsin.