ME/CFS- NIH Discovery of multiple copies of same gene, MUST READ

“… all affected family members had inherited multiple copies of the alpha tryptase gene. Laboratory experiments suggested that the additional copies were leading to increased production and release of alpha tryptase protein from immune cells.”

I can’t believe I found this study from NIH. I don’t know if this is a bran new discovery but I imagine it was discovered in the last couple years and they are working on a cure. Hopefully it will lead to a cure sooner rather than later. Ok, I just found an article showing it was discovered in 2016, maybe there are additional articles after this one? If anyone knows how to look it up, please do and post a link to the article here.

NIH: GENETIC EXPLANATION UNCOVERED WITH LINKS TO ME/CFS SYMPTOMS
strong texthttps://solvecfs.org/nih-genetic-explanation-uncovered-with-links-to-mecfs-symptoms/

After reading the symptoms does this sound like you?
Do you have tons of allergies?
What other symptoms do you have?
Has anyone had their Alpha Tryptase levels checked? If you do get it checked please let us know what you find out! Thank you so much!

Did anyone have these genes on your report? 23andme didn’t put them on my report, bummer. I have me/cfs and i have been bedridden for the past five years! I am so curious if anyone’s genetic report has these TPSB2 and TPSAB1.
“The α/β tryptase locus normally contains two genes, TPSB2, expressing only β-tryptase, and TPSAB1…”

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I’ve never had my Alpha Tryptase levels tested, but I seem to have some of the symptoms. I also am uncertain if I have the genetics. I have multiple allergies, asthma, unexplained hives and rashes, fibromyalgia (joint pain, fatigue), stomach issues and I’m prone to low blood pressure …

Ran across this:
https://www.mastcelldisease.com/mast-cell-activation-tryptase-everything-you-wanted-to-know-and-more/

I have high prostaglandin D2 and take compounded ketotifin to help regulate it. There seem to be a lot of different types of mast cells. Every night and after every shower, I look like a candidate for mast cell ‘disease’. Issues w/ blood vessel dilation, which drops blood pressure. Doc is still researching.

It talks about a protein. More important seems to be enzymes - just based on working w/ my immunologist for 5 years now. Proteins are just there. Enzymes are the activity of life, that take action on the protein. If that gives some perspective.

I grew up in a desert and so strangely enough, have allergies to about every grass and many weeds. (joke) I started immunotherapy but we had to stop. Us patients get to talking while we wait the 20-30 minutes to make sure we don’t have a systemic reaction. Some take all 4 of the ‘newer’ anti-histamines at once, plus ketotifin (novel approach not FDA approved in USA), and still have harsh side effects. One gal showed up on fire demanding a diagnosis of ‘mastocytosis’. It’s actually a condition rather than a disease.

Here’s the key - it’s triggered by something. And it triggers a systemic response.

Some people’s guts are in such a state that meat doesn’t digest, or they have high stomach acid - not low enough to digest, or not enough to do the job thoroughly. (it’s been linked to blood type A, but not always). And it’s a downstream effect of antibiotics plus diet minus exercise, so the gut becomes susceptible to different conditions. The meat eater here, it just sits in their gut and produces massive amounts of histamine. That triggers mast cells and other immune responses.

Over time, the gut erodes. We don’t eat enzymes in our diet so our organs are under full pressure. Grains, beans, nuts, seeds - these all have enzyme inhibitors. That is how they naturally pass through the digestive system, and what allows them to sprout the following spring. We eat these in mass quantities.

They try to pin it on genes, but the body’s internal environment of inflammation and eventual auto-immunities eventually take a toll. A slow burning fire.

Now that we have the genome mapping technology, they’re looking for micro causes. Which is true in some cases. But perhaps it’s the body unable to balance the long-term chronic attacks from stress, lifestyle, and modernism. (vitamin D deficiency an epidemic? Because we don’t get outside and move! Now it’s magnesium…)

I guess I just want to suggest to think bigger. It’s too easy to narrow down on one thing and blame THAT, if THAT was fixed, I’d be better. Unfortunately it’s not that simple. Systemic trends over time cause these expressions. Not at all downplaying your situation - I’m there too. It’s the new phenomenon in doctors offices and has them stumped. At least it’s more common that fewer patients will be simply dismissed:slightly_frowning_face: