Jason Hall's FUZE protocol
I’ve managed to beat this beast for well over a decade, now, while maintaing great function, but am slowly starting decline a bit. Not a ton, but a bit. However, I have held back on disclosing what I use due to the fear of possibly making someone worse. We are ALL different with various ALS causes and subtypes.
I feel, at this point, it really doesn’t matter with this damn disease. Please understand, with what I share below (which will be the things that I feel have been the responsibility for not only my longevity, but also maintaining my overall good functioning and health). It will be brief, but to the point. If you have any questions, please PM me. Not all info has been disclosed, below.
Please use the following information or “Fuze protocol”, at your own discretion. This is NOT a comprehensive list of everything, but it is a list of the most important things I feel have been most successful for me...
1. Lab Abnormalities - By FAR, me getting every blood test known to man early on and correcting all my blood abnormalities, within my control, has been the number one key to my success, IMO. No question about it. Do it, now, if you have the money or your doctor will order everything under the sun. Then, fix all abnormalities. ASAP.
2. Zinc Gluconate (Gluzin only) - I conducted a DIY trial on here with Riku a few years ago. Bottom line is, for whatever reason, we found almost ALL PALS had elevated free copper (and almost ALL healthy controls didn’t). Therefore, to bring that down, we used what is used in Wilson’s Disease (Gluzin). It definitely has made an enormous impact on my own breathing, mainly. I was starting to greatly slide downhill with my breathing (FVC), until I started on Gluzin. Immediately, my decline almost halted and has continued that way to date (for the most part). I have many many case reports of others, as well, of it working the same for. To be 100% honest, though, I have had those who have said it has done hardly anything for them. Again, take it at your own risk, but with this disease we all have nothing to lose, IMO. I, currently, use a total of 100mg (50mg twice daily).
3. Sleep 8 hours a night (making SURE 6 of those hours are between 9pm-3am!!!) using a BiPAP as early as possible (needed or not). Also, lightly exercise, so not to wear yourself down too much. I swim at my local rec center each day 5 days a week. Also, drink PLENTY of water and eat a healthy diet eliminating ALL processed foods and sugar, mainly. Avoid MSG in foods. I stick with organic chicken and turkey plus wild Salmon, only, plus tons of fruits and vegetables.
4. Medications - I am a firm believer in quality of life over quantity, therefore I have ZERO problems with using any medications I can to help improve that. These include;
A. Klonopin - Helps me sleep well, relax me, reduce my muscle spasms, and greatly reduces my fasciculations, all by increasing sensitivity to GABA receptors.
B. Elavil - This medication has done wonders for me. It greatly regulates glutamate receptors, helps anxiety, and helps me sleep well, amongst other benefits I’ve experienced.
C. Lyrica - I take this medication, again, to help regulate/reduce glutamate and reduce my pain. It works. I take mine before meals.
D. Metformin - Diabetic or not, this medication is extremely important in regulating blood sugar. I take one before each big meal. Eliminates blood sugar spikes, which is extremely important for neuroinflammation in the brain (and body).
E. Losartan - This medication helps with regulating blood pressure, again, an important key to maintaining a healthy body and brain.
F. Prednisone - Without a doubt, this medication is extremely important in regulating inflammation. I started on this medication very early on and haven’t stopped. There are side effects, but they’re worth being six feet above than six feet below, at least too soon.
G. Zoloft - Controls my depression, OCD, anxiety, and helps boost my serotonin levels. Unfortunately, it is extremely difficult to measure serotonin levels in the brain. However, if your blood levels are low, there’s a good chance your brain levels are, too. Check them.
H. Injectable Testosterone - My levels were extremely low, and I tried a lot of things to help boost them. Only thing that worked for me was injectable testosterone only. All my levels returned to normal, however, soon after. Nothing else worked except monthly injections.
I. Zyrtec - Again, very very important to control allergens (which create inflammation in the body!). Cheap and very effective.
5. Supplements - Dave J (and others) have covered these extensively. No reason for me to repeat the same things. I just know what has worked for me, after weeding through them all. If you’re interested, PM me, but the info is out there in plenty of you wish to try various supplements. Surprisingly, I use very little supplemtnents, but the ones I do use have been very effective. The number one supplement I have used in my Fuze protocol, without question, is an “all inclusive” - vitamins and minerals - has been Total Nutrition by NWC Naturals. I don’t want to include a link so that nobody thinks I’m trying to earn a commission (I’ve been a member here too long to know what travels through people’s mind!). If I had to recommend one supplement, it would be this one. In addition, I have used a refrigerated probiotic at nighttime and digestive enzymes before ALL meals to help break all my food down.
6. Chiropractor - I’ve used a chiropractor ever since the beginning. I can’t really say if she has made a difference or not, but I would never stop. IMO, she has (via aligning my spine).
7. Laughter - I watch as many funny movies as I can to keep me from getting too depressed (especially after my wife committed suicide, two plus years ago, leaving me behind with two boys to raise with the daily challenges I face). Benny Hill is one of my favorites in terms of comedians!
So, there you have it. My “Fuze protocol”, in very short form. I’ve, also, tried propofol (an anesthetic) several times with great temporary success. Unfortunately, the improvements didn’t last but a few weeks to months at various times. Something to think about trying. Also, I take Crestor (a statin). I’m a believer in it helping with not only cholesterol, but inflammation, too (despite what studies have shown with ALS). There have been positive studies using statins and ALS, too!
Again, if you want anymore details regarding my “Fuze protocol”, PM me, and I’ll be happy to answer specific questions.
Again, please use the above information at your own risk. Any or all may or may not help you and your ALS subtype. We all are different, biologically, so what works for one may speed progression up for another. Just a warning. Good luck, if you decide to try any of the above. They’ve all, together, kept me alive and functioning well for over a decade, now.