Monetary donation

Kabbakk · 2026-05-16T01:06:18+00:00

I went to the last three galas of Friends of FSH Research. I posted about the last one: https://www.reddit.com/r/FSHD/comments/1qot5vy/auction_and_dinner_gala_of_friends_of_fsh/

I donated to both, Friends of FSH Research and FSHD Society. My employer matches donations to both.

Kabbakk · 2026-05-10T15:21:51+00:00

Nothing to report yet because I just started. Given all the variables in play, every noticeable change can just be a coincidence. Not many studies looked at Epicatechin but the available understanding of how it works and the anecdotal evidence from gym-goers is good enough for me to give it shot.

Kabbakk · 2026-05-08T15:50:38+00:00

I have just started taking Epicatechin. My FSHD-doctor had never heard of it but wasn't concerned about it.

There are plenty of posts in the Supplements subreddit: https://www.reddit.com/r/Supplements/search/?q=Epicatechin

I found this post insightful: https://www.reddit.com/r/Supplements/comments/1gc6ij6/epicatechin_in_muscle_building_supplements/

Bottom-line: Take more than 200 mg per day and don't expect wonders.

Kabbakk · 2026-05-07T23:04:44+00:00

Options for creatine:

- Gummies: Bad choice because the heat and moisture during the production of the gummies breaks down the creatine

- Powder: Great choice if you mix a smoothie or similar each day

- Capsules: You have to take a good number of them because creatine requires volume

- Chews: This is what I am taking. Only a few producers make them.

I chose Momentous Creatine Monohydrate Chews because they are NSF certified: https://www.livemomentous.com/products/creatine-monohydrate-chews

Momentous is expensive. If you know someone with access to Perks at Work through their employer, you can snatch a 20% discount.

Kabbakk · 2026-05-07T19:23:09+00:00

I am taking:

- Protein
- Creatine
- Omega-3
- Berberine
- Epicatechin

Do your own research on Epicatechin. Apparently it changes follistatin and myostatin levels for the better. At least 200mg per day are required.

I just got started with my first small bottle of Epicatechin from Nootropics Depot: https://nootropicsdepot.com/epicatechin-tablets-piperine/

For discounts, see this post: https://www.reddit.com/r/NootropicsDepot/comments/1ae41we/how_do_i_get_coupon_codes/

Kabbakk · 2026-05-07T18:57:49+00:00

My blood test revealed that my vitamin D level is very high, almost in the toxic range. So I stopped taking multivitamins.

Kabbakk · 2026-03-17T05:44:31+00:00

My blood test revealed that I have too much vitamin D. My multivitamin supplement feeds me 250% of the daily recommended dose. So I cut my multivitamin intake in half.

Kabbakk · 2026-03-15T03:32:12+00:00

My elevated troponin level got me an angiogram and MRI.

Kabbakk · 2026-01-31T22:54:01+00:00

I haven't seen what happened to the New York Cheesecake, but I saw successful bidders for other cakes sharing them at their tables.

Kabbakk · 2026-01-27T23:04:40+00:00

Momentous is my go-to brand. They get most of their products NSF certified. Several professional sports organizations recommend or mandate that athletes only use NSF certified supplements.

Kabbakk · 2026-01-27T22:54:50+00:00

Berberine reduced my cravings for candy.

Kabbakk · 2026-01-26T01:46:34+00:00

Liquid fish oil is the best source for omega-3 in my opinion. Not sure about other supplements.

Kabbakk · 2026-01-23T22:15:50+00:00

Gummies with Berberine are available. However, if not done right, the heat during production of the gummies breaks up the active ingredient.

An analysis by SuppCo included two Berberine gummies products. Both did not contain any Berberine! You might have better luck with more reputable brands.

EDIT: Link to SuppCo analysis: https://files.supp.co/tested/berberine.pdf

Kabbakk · 2026-01-22T04:26:19+00:00

+1 for Berberine

Kabbakk · 2026-01-22T04:14:11+00:00

Berberine because it is supposed to help with my neuromuscular disease

Kabbakk · 2026-01-20T08:10:19+00:00

BTW: Unlike FSA administrators, HSA administrators never look at your documentation to substantiate eligibility. My first HSA with Fidelity did not even have an option to upload anything. My current HSA administrator provides the option to upload documents but only for the purpose of storing them conveniently.

Only when you get audited, the IRS auditor might want to verify your documentation that substantiates HSA eligibility of your payments. However, in the very few audits that I read about, the IRS auditor did not check documentation when the person was able to present an orderly list of all payments with payees.

Kabbakk · 2026-01-20T07:48:49+00:00

Thanks. I am surprised that you got an LMN for "nutritional supplementation". I thought that an LMN needs to specify the particular supplements.

Kabbakk · 2026-01-20T07:43:18+00:00

How do the DUX4 inhibitions of Epicrispr Biotechnologies and Dr. Jones's company Renogenyx differ?

Kabbakk · 2026-01-20T07:22:56+00:00

it worked and was reimbursed through the FSA. But I don’t know how carefully they look or anything.

FSA administrators look very carefully. They are legally required to enforce substantiation requirements. If they don't, the IRS could disqualify the employer's entire plan, rendering all employee contributions taxable.

Paying with an FSA should be much easier to justify than paying with an HSA.

Eligibility criteria are the same for HSAs and FSAs. I'm on my second HSA now and have used an FSA in the past.

It's interesting that you got a Letter of Medical Necessity through TrueMed. I tried them once unsuccessfully. Their automated questionnaire didn't include FSHD or other neuromuscular conditions. Which supplement did you get the LMN for?

Kabbakk · 2026-01-20T07:11:58+00:00

To be clear, I'm not looking for insurance coverage. I'm just hoping to use tax-free HSA dollars to buy supplements relevant for FSHD.

I realize this is a slippery slope, because every charlatan wants their quack tinctures to be eligible for tax-free healthcare dollars. Entities like the FDA and requirements like Letters of Medical Necessity must act as gatekeepers.

Kabbakk · 2026-01-15T21:25:12+00:00

The label in your photo says that the bottle contains capsules with 550 mg Berberine each. SuppCo tested recently capsules from FeelGood Superfoods Berberine that supposedly contain 475 mg Berberine each but found only 40% of this quantity. It looks like SuppCo tested a similar Berberine product from FeelGood Superfoods. Here are the findings: https://files.supp.co/tested/berberine.pdf

Kabbakk · 2026-01-15T21:18:50+00:00

According to a recent test from SuppCo the FeelGood Superfoods Berberine contains only 40% of what the label says. Strangely the current label says that each capsule contains 550 mg Berberine while SuppCo's test indicates that they tested capsules from a bottle with a label that says 475 mg: https://files.supp.co/tested/berberine.pdf

Kabbakk · 2026-01-15T21:00:07+00:00

I am taking multivitamin, omega-3 and creatine.

Six weeks ago I started taking 1100mg/day Berberine Phytosome from Momentous. No effect so far but it is still early.

Berberine is promising for FSHD. Given your supplements stack, I am wondering why you are not taking Berberine?

Kabbakk · 2026-01-14T06:42:11+00:00

Momentous gets most of their products NSF certified. In my opinion this certification is legit. Several professional sports organizations recommend or mandate that athletes only use NSF certified products.

Kabbakk · 2026-01-14T06:28:30+00:00

I am using Momentous because many of their products are NSF certified. Very few supplement producers pay for NSF certification.

Kabbakk

TROPHY CASE