Author Topic: Iwillbeatthis treatment and case diary  (Read 2606 times)

Iwillbeatthis

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Iwillbeatthis treatment and case diary
« on: March 10, 2021, 06:39:34 PM »
Someone online suggested these two ideas to lower catecholamines and up regulate MAO-A

1. Avoid foods high in PEA phenylethylamine (basically all protein) and use PEA and tyrosine free protein powder (tyrex1)

2.  https://pubs.acs.org/doi/10.1021/acschemneuro.0c00628
This suggests that downregulating Sirt1 results in upregulated MAO-A (which is what you want). Slow release NAM (nicotinamide)  in doses of 1-2g should do that for you.
Additionally I suggest NAC slow release 1200mg to balance glutamate and reduce catecholamines

I tried no 2 and it did reduce my reactions to showers significantly, I had never tried this form of niacin before, I only had tried the nicotinic acid flush version  for POIS which didn't work years ago, I also tried a non flush version but this wasn't nicotinamide. I did have two cetirizine  on the morning of the shower which may have contributed.

I didn't have the NAC sustain slow release version so I need to buy this and test out as NAC only has a half life of five hours, I did wake up hungover one morning maybe because I only used the normal version the night before with NAM but then I took two NACS in the morning and it went.

It seems I feel the effects of NAC way more than usual when I stack with the NAM so they work well together. On the 3rd time I tried this stack I got a really bad headache and nausea, I took 2.4g of NAC with 1500mg NAM in a short time so I probably took too much.

I then cut down my animal protein and eggs consumption down drastically and this is where I see massive changes. It's like the asperger symptoms I have vanish, Music sounded good again, motivation came back, compulsive checking of phone stopped, speech and social skills became normal, no anixety and my confidence became god like I could speak to any stranger naturally without any autism showing. The NAM and NAC could also have contributed.

It felt my brain and neurotransmitters were working as they should be for the first time in as long as I can remember. I lost my a lot muscles in the last few days but it was worth it for the discovery. This fixes my dysautonomia symptoms and excess neurotransmitter issue. I would rather feel better and functioning instead of not feeling good but having an in shape built up body.

A few days without the animal protein or eggs intense fatigue did start to set in but my head still felt clearer than ever before, I will still eat animal protein (high PEA foods) but just in much lower amounts.

On low fodmap my POIS became worse than before , now on this low animal protein diet my POIS worsened even further - wet dreams are causing me bad symptoms again when most of last year they stopped giving me symptoms, possibly it could also be to do with poor food choices on this low protein diet, I was eating fodmaps, histamine etc.
« Last Edit: March 15, 2021, 04:35:44 PM by Iwillbeatthis »

Iwillbeatthis

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Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
« Reply #1 on: March 10, 2021, 06:56:31 PM »
This post should have come first as it explains how why a low protein diet helps me.

I stopped taking Sam e a few months ago as it started  giving me bad Kidney pain and speech difficulties. I tried it one more time recently after a long break and still had the same issues. After this meat started also giving me kidney pain. Hopefully the Sam e hasn’t damaged my kidneys. My creatine was at the highest range before I started Sam e.

This made me remember my OAT test results that said I had  high 2-Hydroxyisovaleric acid which suggested mild maple syrup urine disease. This means you’re unable to break down branched chain amino acids. When I originally got the results I ignored it and was unsure it had any significance but a year later I found out this is a known cause of Intellectual disability but this usually can account for autism/asperfers.

BC Children’s Hospital's Dr Sylvia Stöckler-Ipsiroglu and Dr Clara van Karnebeek produced a remarkably thorough website called Treatable-ID, which sets out information on 82 treatable forms of Intellectual Disability. MSUD being one of them.

Now people who have the serious form of this disease have over 20 times over the normal limit for  2 -Hydroxyisovaleric acid and have serious consequences from it. My results were only 1.7 times over the upper limit but still way out of the normal range for the general population. I did the OAT test in the morning and the day before I specifically remember not eating any meat so maybe results would have been higher if I had eaten my usual 660 grams of meat per day. I checked and I do have mutations on 2/3 of the genes for MSUD. So I suspect this could be a possible cause of my autistic symptoms.

So here's another reason why low protein helped me. I am unsure what in the protein is causing me problems it could be:

1. The high PEA (Phenylalanine) content

2. Branched chain amino acids in protein for the possible Mild MUSD

3. The protein fermenting in gut produces phenols and ammonia - "You have homozygous gene mutations for most of the critical enzymes for catabolism  of phenols and drugs" - Mast cell specialist

4. Meat and eggs have the highest sources of arachidonic acid

Unfortunately they only sell this Phenylalanine- and tyrosine-free protein powder in the states and it's very expensive https://abbottnutrition.com/tyrex-1 , its probably not healthy but it could be a game changer for me.

If anyone has any thoughts or suggestions please reply.
« Last Edit: March 10, 2021, 07:42:05 PM by Iwillbeatthis »

Iwillbeatthis

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Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
« Reply #2 on: March 15, 2021, 04:02:41 PM »
I'm going to try micro dosing Psilocybin this week, I've had my brothers Psilocybin pills since last summer but I haven't had any desire to take them until recently.

https://epiphanyasd.blogspot.com/2021/03/medicinal-psychedelics-for.html

"Medicinal Psychedelics for Neuroinflammatory conditions - Depression, Severe Headaches, OCD, Addiction and Autism

Today’s post is about treating a wide range of conditions that share neuroinflammation in common, by targeting the serotonin receptor 5-HT2A."

You can read the full blog post in the link above.

Muon

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Iwillbeatthis treatment and case diary
« Reply #3 on: March 15, 2021, 04:08:54 PM »
Ok nice you have made a thread for yourself. Much easier to follow your actions this way.

Iwillbeatthis

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Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
« Reply #4 on: March 15, 2021, 04:20:47 PM »
Also I'm going to try antibiotics in the future when I finally manage to get hold of some; either Rifaximin or Amoxcillin. (I should have already had them a lot sooner if the doctors in my country weren't so difficult to deal with)

 I don't see how my gut issues can be fixed with out them. Low fodmap diet, natural antibacterial/antifungals and probiotics aren't doing enough to fix my gut permanently as I am still sensitive to many foods which shouldn't be causing me a problem.
« Last Edit: March 15, 2021, 04:26:16 PM by Iwillbeatthis »

Muon

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Iwillbeatthis treatment and case diary
« Reply #5 on: March 15, 2021, 04:31:12 PM »
https://forums.phoenixrising.me/threads/poll-small-intestinal-bacterial-overgrowth-sibo.82265/#post-2328148

IMO is harder to treat and probably need a combination of antibiotics. Let me know where to get antibiotics like Rifaximin, it could be useful for me down the road (being ignored twice for a SIBO test ::)). If you find compilations of antifungals in literature, share it please, in the POIS paper treatment summary thread. Yea food sensitivities...not sure what to make of them. I would delete the 'Lowering Catecholamines' part from the title.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #6 on: March 15, 2021, 05:03:49 PM »
https://forums.phoenixrising.me/threads/poll-small-intestinal-bacterial-overgrowth-sibo.82265/#post-2328148

IMO is harder to treat and probably need a combination of antibiotics. Let me know where to get antibiotics like Rifaximin, it could be useful for me down the road (being ignored twice for a SIBO test ::)). If you find compilations of antifungals in literature, share it please, in the POIS paper treatment summary thread. Yea food sensitivities...not sure what to make of them. I would delete the 'Lowering Catecholamines' part from the title.

Yeah the Rifaximin is expensive, so I thought I may as well try and get through the state health system first, my GP got my hopes up that the gastroenterologist could prescribe me it. I saw the gastroenterologist at the start of October and he wanted to do some crappy tests like small intestine permeability and general bloods. I guess the tests came back normal and now he seems to ignoring my emails about a follow up appointment. I somehow got through to him on the phone when I called the hospital and he said his receptionist would contact me for a follow up. Now two months later I still haven't been contacted for a follow up and he continues to ignore all my emails. What a joke... Six months wasted basically...

The Nemechek protocol for adults with autonomic dysfunction uses a Rifaximin dose of 550mg twice daily for 10 days. And some people need up to 10 rounds of this until they are better.

Surprisingly someone showed me you can actually get Rifaximin for travel from an online uk pharmacy, the only trouble is you would need to buy 5 of them (costing £150) for the equivalent of one Rifaximin course in The Nemechek Protocol for adults. And they probably wouldn't allow you to buy that many. https://www.travelpharm.com/online-consultations-c166/travellers-diarrhoea-c167/norgine-xifaxanta-200mg-x-9-tablets-p10012


The Amoxicillin is appealing to me as it seems to have been successful with 4/4 POISers (Johns did return months later though.)

One person in here said the Rifaximin didn't do much for him but the Amoxicillin did work for him instead.

Muon

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Re: Iwillbeatthis treatment and case diary
« Reply #7 on: March 15, 2021, 05:31:12 PM »
John used azithromycin. Seems like you and I need to look for a commercial lab again for SIBO testing...ppfffff.

The Nemechek protocol for adults with autonomic dysfunction uses a Rifaximin dose of 550mg twice daily for 10 days. And some people need up to 10 rounds of this until they are better.

The autonomic symptoms may stem from the gut (although gut/brain axis is two-way road):

Abruptly waking up at night due to a bowel movement. Food traveling through gut could be felt. Accompanied by activity at an area close to or at the brainstem. Feeling hot. Irregular respiratory rate. Impaired blood circulation body/brain. Sections of limbs getting tense.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #8 on: March 15, 2021, 05:58:41 PM »
Yeah part of the protocol is high dose DHA fish oil to heal the brain but this only starts working after the Rifaximin.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #9 on: March 15, 2021, 07:39:07 PM »
FFS..... https://pubmed.ncbi.nlm.nih.gov/14597554/ 

"These findings suggest that a diet poor in folate may pose a risk of DNA damage comparable to that of a relatively high dose of radiation. "

"Folate deficiency and ionizing radiation cause DNA breaks in primary human lymphocytes"

This is pretty worrying for me considering I have a Folate deficiency

berlin1984

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Re: Iwillbeatthis treatment and case diary
« Reply #10 on: March 16, 2021, 05:27:56 AM »
FYI, my short antibiotics course Amoxicillin+Metronidazol improved general feelings of bacterial overload (my words/feeling, not medical) but did not cure POIS. Improve - yeah maybe
https://poiscenter.com/forums/index.php?topic=2904.msg36479#msg36479

Charles_b

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Re: Iwillbeatthis treatment and case diary
« Reply #11 on: March 16, 2021, 12:53:19 PM »
Also to add, I have had courses of Amoxicillin, Bactrim, Azithromycin, and recently Pylera (Tetracycline + Metronidazole).

None of these have had any impact on my symptoms unfortunately.

Muon

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Re: Iwillbeatthis treatment and case diary
« Reply #12 on: March 16, 2021, 02:03:20 PM »
I ordered some nicotinamide riboside today as I've heard good things about it, it's good for boosting NAD+. Hopefully the effects are a lot better than standard Nicotinamide.

You might as well try to block CD38 at the same time.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #13 on: March 16, 2021, 02:34:17 PM »
I ordered some nicotinamide riboside today as I've heard good things about it, it's good for boosting NAD+. Hopefully the effects are a lot better than standard Nicotinamide.

You might as well try to block CD38 at the same time.

The annoying thing is with most of these flavonoid supplements I end up feeling worse after a few days of using probably because of my gene mutations that say I should avoid quercetin, grapefruit etc.

I'm not sure if Apigenin (grapefruit extract) would be the same but I also can't see any reputable brands selling it.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #14 on: March 17, 2021, 08:01:56 AM »
I've been having kidney pain on and off recently, yesterday I had kidney pain and I went extremely pale (it's not severe pain but a dull ache on both sides under rib cage)  , I think there's something going wrong with methylation - my creatine was at the highest limit in september. I've been meaning to get the kidney issues checked up on for a few months now but these doctors make me feel like I can't even ask them for a few basic tests so I've been putting it off, it's also hard to get anywhere with these GP doctors when the appointments are only 10 minutes long and rushed.

My stools have also turned green in the last week could be because I tried Pepto Bismol or the Nicotinamide, I have also slight liver pain/discomfort probably from the Nicotinamide.

Pepto may have slightly improved me when in POIS but only when I ate a meal, I think long term the Pepto makes me feel worse, its high in phenethylamine. Not gonna try it again.

Muon

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Re: Iwillbeatthis treatment and case diary
« Reply #15 on: March 17, 2021, 08:05:38 AM »
Kidney hypoperfusion? I had a flare of pain in the right-side kidney once for a few seconds, it was extremely painful. Ref

« Last Edit: March 17, 2021, 08:40:06 AM by Muon »

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #16 on: March 17, 2021, 08:28:59 AM »
Whatever is going wrong in the kidneys is causing me problems in my brain eg: find it hard to speak and function. When I was taking Sam e the kidney pain in the mornings was bad but got a bit better after I urinated.

I'm thinking to do a methylation panel test in the future.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #17 on: March 17, 2021, 08:39:54 AM »
Epsom Salt (magnesium sulfate) baths are beneficial to me, I think because of the sulphites and not the magnesium.

I've found some brands don't have any effect: the ones that are food/ pharmaceutical grade have flakes rather than grains and look manufactured don't really have any effect on me.

The ones that look like grains of sand do give me benefits. I think the hotter the bath the more benefits you get from them but this is a problem for me as hotter baths give me issues.

I saw someone online saying the epsom salts for gardening are way stronger and give way stronger effects in the sense of wellbeing. I really want to try these but I'm not sure if they're safe lol, they are yellow in colour rather than white.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #18 on: March 17, 2021, 01:42:16 PM »
I ordered some nicotinamide riboside today as I've heard good things about it, it's good for boosting NAD+. Hopefully the effects are a lot better than standard Nicotinamide.

You might as well try to block CD38 at the same time.

Good suggestion I bought some high quality matcha tea (like Gino said) today and now I feel this stuff really working.

Iwillbeatthis

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Re: Iwillbeatthis treatment and case diary
« Reply #19 on: March 20, 2021, 09:28:27 AM »
Currently using : Byron white A FNG formula for mold/candida - Byron white formulas have the strongest natural detox supplements for lyme, mould and other infections. Using charcoal as a binder for the toxins.

https://www.gordonmedical.com/byron-white-formulas-a-fng-and-chronic-fungal-infections/

https://forums.phoenixrising.me/threads/dr-neil-nathans-new-book-toxic-heal-your-body-from-mold-toxicity-lyme-disease-mcas-and.61303/#post-1007619 You can search byron white formulas on here they do help people with these chronic conditions

Now that I've upped the dose to four drops I am starting to see detox reactions , brain fog ,slight  nausea, diarrhoea, social anxiety.

I've tried oregano oil, liposomal glutathione, nystatin and benotnite + charcoal as binders but they weren't strong enough to have any permanent fix.
« Last Edit: March 20, 2021, 09:55:30 AM by Iwillbeatthis »