Post Orgasmic Illness Syndrome (P.O.I.S.)

POIS Life Style => Lifestyle Diary and POIS Summaries => Topic started by: Iwillbeatthis on March 10, 2021, 06:39:34 PM

Title: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Iwillbeatthis treatment and case diary
Post by: Muon 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.
Title: Re: Lowering Catecholamines - Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Iwillbeatthis treatment and case diary
Post by: Muon 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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
Title: Re: Iwillbeatthis treatment and case diary
Post by: berlin1984 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
Title: Re: Iwillbeatthis treatment and case diary
Post by: Charles_b 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon 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 (https://link.springer.com/article/10.1007/s00415-021-10502-z)

(https://media.springernature.com/lw685/springer-static/image/art%3A10.1007%2Fs00415-021-10502-z/MediaObjects/415_2021_10502_Fig1_HTML.png?as=webp)
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis 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.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 20, 2021, 09:46:00 AM
The week before my POIS started I had a fever from going out and drinking too many nights in a row, The fever I did have bad back pain and leg pain and headache.

While I was recovering from the fever I had a fleshlight, the only problem was is the last time I had used it I forgot to wash it properly and went on holiday for a few weeks. When I opened it after a few weeks it stunk and there was yellow mould/fungus floating in the bottom, I was disgusted and washed it with hot water in the shower but I never used any disinfectant/alcohol like you're supposed to do, I didn't use soap either as apparently that damages it. I then stupidly used it after washing it (this was while I was nearly recovered from the fever) then 2 days later I had suddenly developed POIS.

The POIS symptoms the first few months were extremely severe: severe lower back/upper back pain, leg pain/leg weakness, headaches, sore throats, chest pain, low grade fever, abdominal pain, nerve pain, like my whole body was shutting down. I had nothing going on in my personal life which would have caused any of this, in fact it was a good time in my life when the POIS started

This got a a lot better after a few months but I was still left with brain symptoms, some back stiffness, bladder pain, some nerve pain in feet.

I told the Mast cell research Professor this story and he said it's definitely had something to do with my POIS starting, I told normal drs this embarrassing story and they had nothing to say and didn't think it was linked.

I did post about this ages ago but no one had anything to say, I haven't seen someone on here with such a clear possible cause as this and the timing of the event and POIS starting was too close for it not to be related.

Unfortunately for years I tried to tell mainstream drs to check for candida/mold or give me antifungals but they don't get taught about this topic in medical school and apparently there are no reliable tests for candida Muon said.


Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 20, 2021, 10:08:42 AM
One more thing happened one year before my POIS started: I took the drug ketamine at a rave, in the past I had tried it with no issues at all(maybe had taken around 7 times before). This time it caused some permanent damage to my bladder I found that ever since then I would get pain in the bladder region if I smoked weed or drank alcohol. Smoking weed would be worse and it caused bladder pain lower back pain and leg pain, it also would give me a cold (runny nose the next day) I would also find it hard to urinate if I smoked weed. One time I smoked weed and I could barely urinate for three days.

I guess there were probably some heavy metals/bad stuff in the ketamine which caused this damage as I got it from a unreliable source, or it may have just been too strong for me.

Cystoscopy showed nothing: but I do remember seeing a red inflamed patch on the camera screen which looked the same as IC ulcers. I now know that if it was a cystoscopy under general anesthesia then they would be able fill the bladder with liquid and check for hemorrhages, and also some doctors are taking biopsies of the bladder vessels to check for mast cells.

6 months after this ketamine thing happened I had normal vaginal penetrative  sex with a girl and after the sex I had diarrhea with lots of blood in my stools??!!
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 20, 2021, 10:24:38 AM
One more thing my urine was also very cloudy when POIS started, in urine samples you could see tons of mucus. Testicles were also red and itchy.
Bacterial infection urine tests came back negative but they never checked for candida like I asked for.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon on March 20, 2021, 12:29:18 PM
In addition to the symptoms i sometimes have what you call 'the chalky stuff' in my urine, but ive only been noticing that the last few years. Two years ago it was so bad that for months it was in every pee (i call it 'dust clouds') and had it tested by my doctor, but they said it wasnt anything to worry about (didnt tell me what it was).
Last year i had 2 UTI's for the first time in my life. Another possible POIS related thing is i've been having tremendous sharp pains in my prostate in the middle of the night, but only a couple of times a year. The pain lasts about half an hour, it started when i was about 30.  I have not experienced these pains for 2 years now however.

Today i read something interesting on the NSF:
"Sexual dysfunction: Postorgasmic illness syndrome, Suzanne J. Farley
Abstract: New evidence supports the hypothesis that postorgasmic illness syndrome (POIS) in men involves a hyper-reactive immune response of the mucosal epithelium that lines the urinary tract to seminal fluid."

In 2010 my feces was tested on several things among which beta-defensin 2.
- beta-defensin 2: 139,20 ++ (ref < 23, so 6 times the maximum value)
I understand that BD2 is an anti microbial peptide made in mucosal epithelium cells and a high level indicates a hyper-reactive IS (the IS part you are born with). I wonder though if BD2 from the mucosa near the urinary tract would show up in a fecal test.
Anyway, i wouldn't be surprised if the white stuff comes the reaction in this mucosa, but i don't believe it's semen.
Title: Re: Iwillbeatthis treatment and case diary
Post by: berlin1984 on March 20, 2021, 03:55:12 PM
The week before my POIS started I had a fever from going out and drinking too many nights in a row, The fever I did have bad back pain and leg pain and headache.
...

Wow, interesting story. I hope you manage to treat this somehow even without doctors, just with supplements or non-prescription stuff for bladder issues (My go to is Angocin).

A diagnosis would still be good though, maybe you can pay privately for it somewhere.

I also took K a few times but that was already after POIS started I think...
I don't have your bladder related physical symptoms except itchy groin area..
Title: Re: Iwillbeatthis treatment and case diary
Post by: Hopeoneday on March 20, 2021, 04:31:04 PM
Hi, Berlin, off topic - What job can a man with POIS and CFS do in Germany? From your point of view?
Do doctors in Germany accept the treatment of CFS syndrome
patients?
Title: Re: Iwillbeatthis treatment and case diary
Post by: Hopeoneday on March 20, 2021, 04:39:43 PM
https://poiscenter.com/forums/index.php?topic=915.msg8818#msg8818
White chalky urine...  some reported recovery after get rid of chalky staff
from body in urine...

White stuff https://poiscenter.com/forums/index.php?topic=108.0

https://poiscenter.com/forums/index.php?topic=104.msg800#msg800
Chalky sutff??? Is this related to calcium???


https://poiscenter.com/forums/index.php?topic=965.msg8767#msg8767
Intresting post from member -UnderstandingPois...
Chalky stuff, circulation etc

NSD chalky stuff out.
https://poiscenter.com/forums/index.php?topic=54.msg880#msg880
Title: Re: Iwillbeatthis treatment and case diary
Post by: berlin1984 on March 21, 2021, 02:14:01 PM
Hi, Berlin, off topic - What job can a man with POIS and CFS do in Germany? From your point of view?
Do doctors in Germany accept the treatment of CFS syndrome
patients?

Thanks Hopeoneday, you finally nudged me into creating a thread about myself...
(Yes Muon you asked about this for everybody  ;D )

https://poiscenter.com/forums/index.php?topic=3760.0
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 22, 2021, 05:35:19 PM
Had 2 Os yesterday and my symptoms today have been much better than they have been in the last two months.

Heres what I've been taking/doing nicotinamide riboside, matcha tea, nicotinamide extended release, NAC, epsom salt baths, byron white a fng, lymphatic drainage massage from groin lymph nodes (perrin technique), psilocybin micro dose, eating less/smaller meals, drinking alkaline water, epa oil, mediation with grounding pillow and band.

I've only been taking the nicotinamide riboside for a week but my skin looks so much better and younger on my face.

A month ago I had a really bad O where I didn't use porn so I had to use coconut oil to get hard and do it, well this resulted a really unsatisfactory O and it felt like my prostate didn't empty properly which then caused really bad POIS.

The Os I had yesterday were much stronger and satisfactory because I used porn and I think this also contributed a lot to having a better reaction. So porn is good for me lol....
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 22, 2021, 06:03:32 PM

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.

Lol I looked at the sample report for the same OAT test and the sample also had  high 2-Hydroxyisovaleric acid, so I guess its bs and I don't have any mild MSUD.

Pretty sure it's Phenylalanine in meat causing me issues.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 22, 2021, 06:09:55 PM
I noticed these last two weeks my mum eats a lot of high phenol foods so I'm pretty sure its these causing the hyperactivity, irritability, stimming, anxiety in her, some days she's wired like that and some days she isn't. Histamine could be affecting her to possibly.

She took the astrazeneca vaccine and seems fine from it luckily. I also found out my dad gave her Co-codamol once before and it made her throw up and very sick.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 22, 2021, 06:55:15 PM
A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Going less Crazy on March 22, 2021, 08:36:18 PM
A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.

Even if you open the supplement and eat a few pills??
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 23, 2021, 04:21:54 AM
A friend told me this very useful tip recently; Amazon refund you no questions asked if you want to return something so this can be very helpful if you buy a supplement that you don't react well to or doesn't work.

Even if you open the supplement and eat a few pills??

Yeah I sent some back that were half empty and still got refunds.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 23, 2021, 09:22:01 AM
Luteolin is the least phenolic compound of the flavonoids. It's almost bedtime for me over here and I'm alert as hell, cognitive speaking.

Pure Lut isn't sold by any UK/Eu suppliers which is pretty annoying and the cost/shipping would be a nuisance if I bought from the algonot website.

Not sure if I should try the low phenol neuroprotek or not which is available in the UK. The amount of quercetin in it is small compared to the others but I've been told to avoid quercetin.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon on March 23, 2021, 09:42:07 AM
Cost is kinda risky for you. I took a risk and ordered 9 bottles with discount from Algonot. Going in for the long haul. EU supplier prices for NL are ridiculous.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon on March 24, 2021, 04:15:26 PM
Current standing of plant derived flavonoids as an antidepressant (https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/S0278691518302746).
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 29, 2021, 12:32:59 PM
I tried cutting out meat/fish/eggs again and the difference in my functioning is crazy, I no longer become addicted to my phone, social media and this forum, in fact I don't even want to go on any of them anymore when before I would be checking obsessively. When eating meat my eye contact is not natural with people instead its very shifty, eyes darting around, or staring too long aimlessly like I'm not conscious or don't know how to make proper eye contact - (aspergers symptoms). I can also speak way more freely and expressive without meat and music sounds much better again.

Slow release nicotinamide with NAC does stop the neurotransmitter imbalance caused by meat for me but I still haven't got it working perfect yet and need to find the right dosage. I've ordered a slow release NAC which might help.

If you want to see if meat is affecting you badly just try eating some brown rice, quinoa, or gluten free pasta with some vegetables and see if you wake up better in the morning but I found you do need to eat something rather than eating nothing to see the difference.

These methyl cycle experts like heartfixer.com all recommend vegan diets as meat contains a lot of problematic things for people with neurotransmitter or methyl cycle issues.

If you have the homozygous MAO-A mutations like I do then cutting out meat/fish will help you especially chicken as it's high serotonin/tryptophan

Extra Virgin olive oil makes me wake up feeling inflamed in the morning if I have it the night before, and other phenols are also a problem but I think phenols aren't as problematic as meat is for me.

Its annoying as if I want to feel normal then I need to cut out meat, fodmaps, phenols, histamine, high gi carbs and that basically leaves no food left I'm seriously considering trying the amoxicillin soon as my gut bacteria are clearly problematic. Prebiotics/probiotics didn't fix anything.

I tried an enema yesterday with a probiotic, electrolytes and oregano oil. I still have liquid stools today from it, it didn't make me feel any better yesterday but at least it wasn't as bad as the coffee enemas which made me feel like shit when I tried them a year ago.

I've been trying lots of new supplements phosphatidylserine, ubiquinol, liquorice root extract, thorne electrolytes, zen gaba with l theanine, slippery elm and I haven't seen any good effects from them yet apart from the electrolytes. I might need to try individually so I can see which ones actually are good for me.

I got them all from Iherb which is much cheaper than EU websites and they have much better and more reliable brands like Now Foods and Life extension. They also offer a 25% off your first order, the Now Foods supplements are like half the price of the usual Eu prices on Iherb.

I going to stop buying stuff off Amazon as much as I can, most of the supplement brands on there don't contain the same amounts as they've advertised.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on March 29, 2021, 01:20:23 PM
The pure epa oil from Mind1st has pretty much fixed my dysautonomia I no longer have blood pooling in my head or feet, no issues with heart rate, and my veins look much healthier very thin and hardly visible instead of being thick. Symptoms after exercise seem much improved.

I still have problems with excess neurotransmitters however.

So yes I still technically have some autonomic nervous system issues but the inflammation and blood pooling part have gone.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on April 03, 2021, 07:09:33 AM
Ok here's what I'm starting to think: I have high peripheral dopamine (bad) but little dopamine in the brain:
My gene mutations and symptoms indicate this : unfocused, add, low motivation, social anxiety, dilated pupils.

My GAD gene mutations also indicate I have high glutamate and low gaba so I am going to try Picamilon for this, its gaba that goes straight to the brain (N-nicotinoyl-GABA) a combination of gaba and niacin. Regular Gaba supplements are mostly useless.

Also using NAC Susatin by jarrow which has a much longer half life than regular NAC 8 hours compared to 1.5 hours to lower excess glutamate.

There's probably also some dysfunction going on with DBH enzyme (indicated by my OAT test results - high HVA/VMA ratio) which converts dopamine to noradrenaline, pathogens and toxins can inhibit this enzyme.

I'm now Trialling out white willow bark (safer natural asprin alternative) as a COX2 inhibitor but it also raises dopamine and noradrenaline, with coffee, EGCG (AAAD inhibitor), Vitamin C extended release (boosts DBH activity), agmatine sulfate.

Gonna trial yohimbine (alpha-2 adrenergic antagonist) also..
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on April 06, 2021, 03:34:50 PM
I'm going to experiment by trying BH4, when you are MTHFR A1298C ++ like I am your need for BH4 is very high and BH4 deficiency is likely. I'm also going to try Dr Amy Yasko's methylation protocol as she seems to understand how to fix methyl cycle issues better than anyone else, it will be expensive but better than wasting my money trying to guess myself about which supplements would good to take. Her formulations of b vitamins, sam e are much better amounts than any other company that use crazy amounts.

BH4 breaks down phenylalanine and its the phenylalanine in meat that causes me issues. Gut dysbiosis is also an indicator of BH4 deficiency, BH4 helps break down ammonia.

"Nitric Oxide Synthase (NOS) use BH4 to create Nitric Oxide (NO).

When BH4 is low, NOS generates superoxide (a potentially cell-damaging free radical) instead of NO.

This creates more oxidative stress and can cause dysfunctions of the heart. "

"BH4 is necessary in the production of neurotransmitters like serotonin, melatonin, dopamine, norepinephrine, and epinephrine, which help with body functions such as mood, sleep cycle, memory and appetite.

If BH4 is low then it is possible for neurotransmitters to be low."

I see people like Kurtosis on here also went down the methylation route, Romies took BH4, Nanna took things to boost BH4 like methyl folate, liposomal vitamin C.
Title: Re: Iwillbeatthis treatment and case diary
Post by: berlin1984 on April 08, 2021, 01:51:53 PM
I also remember researching the BH4 route many years ago, but I did not really conclude to anyhing. (or at least I don't remember)

This is from my notes: https://www.healthrising.org/blog/2014/09/25/dopamine-basal-ganglia-chronic-fatigue-syndrome-treatments/
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on April 17, 2021, 10:02:26 AM
Failed experiments:

Tried white willow bark(cox 2 inhibitor) (was taking amounts equivalent to low asprin dose) - it made me feel really drugged out, it increases dopamine/noradrenaline and I did feel like it was turning me crazy in a way. Also tried having a bath while taking it and I felt like I was going to pass out while in the bath (usually I only get symptoms afterwards) however my confidence did seem higher while on it.
I'm probably  allergic to  salicylic acid  as had some small rashes and allergies from taking the white willow which could have been making me feel drugged out I guess. I noticed a similar thing with asprin if I take for an extended period of time where I felt worse.

I then tried Picamilon (a Russian drug) which is a Vasodilator that brings gaba straight to the brain and also normalises dopamine and serotonin levels. At first it did give me a headache and my head felt extremely tight, I did see some benefits from this like felt calmer had more energy and social, but the trouble is it has a very short half life of only 1-2 hours, I also started taking too much as I didn't know what dose to take and felt more autistic and depersonalised. 50mg seems the best dose to take, I was taking 200mg and 100mg doses at times which was probably way too much.

I Tried taking for POIS and well it made my ejaculate shoot super strong like I've never seen before, it did seem to help the POIS symptoms when taking every two hours but my blood vessels in my head felt extremely tight like there was a battle going on in my brain arteries between the picamilon and POIS. Personally I didn't like the feeling and wouldn't recommend. My veins are also bulging at the sides of my head now since taking. I think the 1-2 hour half life makes it hard to correct the gaba/glutamate imbalance we have.

Then tried Pure Lut Professor Theoharides Luteolin supplement, Ive now tried his other flavinoid supplements cystoprotek and brain gain before this, both made me feel worse after a few days. I also feel weird on the Pure Lut so didn't like that either. It's probably the phenols in the flavonoids that causes me issues, the flavonoids also inhibit enzymes like MAOA and MAOB which is a problem for me.
 I Was also taking these other things:

Pure lut
Now foods Ultra Omega D 600 EPA / 300 DHA with 1000iu vitamin d once a day
Picamilon N-nicotinoyl-GABA -
Benfotiamine with meals
Now foods Ascorbyl palmitate - much more absorbable form of vitamin c - fat soluble and passes the blood brain barrier - have with meals
No Fenol - Enzyme for breaking down poly phenol foods with meals
Now foods EGCG green tea extract (AAAD inhibior) two-three times a day - Seemed to give me detox symptoms at first bad diarrhoea but now feel good
Byron white A fng for mold/candida twice a day
Now foods Testojack 200 testosterone supplement once a day - I Like this

Anyway I did see some benefits from this stack but I also wasn't functioning properly in other ways, like I felt more autistic and was blinking excessively even when other people weren't around. Now I've stopped all of this and I don't recommend taking this many supplements at once as it becomes hard to see whats working and what isn't, if you are going to build a stack the best way is to start adding new things in very slowly and write a diary.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on April 17, 2021, 10:21:57 AM
Positive News:

I have now started the Dr Amy Yasko methylation protocol

I started her Nerve Calm RNA nucleotide which fixes the glutmatae/gaba imbalance and well I feel massively better from it. I've tried many other supplements to fix the glutamate gaba imbalance(NAC, Gaba, l theanine, melatonin , glutathione, valerian root) and none of them have been anywhere near as effective as this one. This supplement seems to perfectly balance my brain.

Also started taking her Cytokine balance RNA which could be helping too.

And I'm taking MTHFR A1298C+ Liver Support  which is important for me as I'm A1298C homozygous and it helps the liver to produce natural BH4, well now I realise the reactions to meat have gone and I also feel a lot better from this. If you want to read more about this supplement here is an explanation down bellow.

I feel so much better from just these three supplements and my Asperger symptoms seem to be disappearing and POIS recovery time was also faster than normal(this was on the first day of taking the supplements). I've spent thousands and thousands of pounds before this on supplements trying to guess what I need to take but this was a waste of time, this protocol so far seems to work way better than anything I've tried and I'm only three supplements in. I will update my progress in a months time to let you know if it's still working good but right now this is looking very promising.

If you're interested in what the protocol is then here is a guide: https://www.knowyourgenetics.com/media/pdf/FGN-Companion-Guide-9-14-2015.pdf

Most of you guys have OCD, autistic symptoms, brain fog which all are indicators of a gaba/glutamate imbalance. I wouldn't say I even had OCD but I feel a lot better from the Nerve Calm RNA.

If you are looking for scientific studies on this protocol there aren't any, firstly because this protocol is very complex and it would be impossible to do a study with so many variables, secondly studies are extremely expensive and most supplement companies can't even afford the cost of one. I've had two meetings with Proffessor Theohardies in the past and he is a highly respected research doctor in the conventional system and even he can't afford the cost of double blind placebo study for his flavonoid supplement nor has he been able to get funding for one. He told me it would cost a million pounds. Most of the studies done on supplements seem to be institutions testing supplements on healthy members of the general public. None of these supplement companies have the same amount of money as these drug companies for clinical trials. But yeah because of this I have seen some negative articles by Scientists and Autism websites simply dismissing the whole protocol because there's no double blind trials.. It's the same typical lame argument all these "science" guys use against the use of supplements, if only they understood non conventional drs and supplement companies don't have the same kind of money as these corrupt pharmaceutical companies.

MTHFR A1298C+ Liver Support Capsules:
The liver is a key organ in the body that serves multiple critical functions. It helps to detoxify chemicals in the body, it aids in the production of blood components, it helps with bile levels to process fats and it contains higher levels of the compound called BH4. BH4 (otherwise known as tetrahydrobiopterin) is critical for the synthesis of dopamine, serotonin, epinephrine, norepinephrine and for nitric oxide function. In other words, to feel good, to want to be productive, to process arginine to nitric oxide (and its impact on the heart) and for attention and stress issues you need adequate BH4. Unfortunately BH4 levels can be seriously reduced by metals in the body, especially aluminum. In addition, certain SNPs tend to allow for lower BH4 levels, including MTHFR A1298C. In addition those with high levels of aluminum and other metals, those with attention issues, those with super high levels of tyrosine, tryptophan, arginine in the absence of adequate neurotransmitters may all benefit from supporting natural BH4 levels. Lack of BH4 has also been tied to neurological pain, and reduced levels of BH4 are found in models of fibromyalgia. In my personal opinion, this basically includes all of us! I feel that the use of this MTHFR Liver Support capsule is something that should be a part of everyones daily supplement program. My entire family does take it daily and I alternate its use with that of Metal Away (as that also includes supports for natural BH4). I feel so strongly about supporting natural BH4 levels that I had this capsule specially designed to support natural BH4 levels as well as the liver itself, including ingredients such as milk thistle, liver extract, dandelion root, green tea and broccoli. In addition it includes components to help the liver to produce BH4 (tetrahydrobiopterin) with NADH, niacinamide, liver extract and biopterin. Where BH4 is critical for neurotransmitter production, supporting with components that may help to produce BH4 is particularly useful for those who are MTHFR A1298C +, also for those with higher levels of aluminum, those with mitochondrial issues, those who need liver support as well as those who do not have access to Homeopathic BH4 and those who want to supplement the use of Homeopathic BH4. The MetalAway capsules also have components to support natural healthy BH4 so the combination of MetalAway with A1298C capsules may be particularly useful. As a way to support natural production of BH4, I use these capsules as part of my daily supplement regime, alternating the daily use of MTHFR A1298C capsules with MetalAway as natural approaches to support healthy BH4 production in the body, even though I do not have the A1298C SNP. Where I believe that adult females are at a greater risk for breast cancer due to aluminum, and aluminum impacts mitochondrial energy, my feeling is that naturally supporting healthy BH4 levels is a positive step for long term health. My husband Ed also uses both MetalAway and the MTHFR A1298c Liver caps daily. Ed has a family history that includes a mother who has had several brain tumors (thankfully successfully handled with surgery!). Animal studies have indicated a relationship between phenylalanine in certain artificial sweeteners and tumor growth. Where BH4 is important for processing phenylalanine (a component of Nutrasweet), the use of this supplement is something both Ed and I take including those related to phenylalanine. The A1298C Liver Support capsule contains milk thistle along with a range of other ingredients for liver support. Milk thistle is reported to help protect against some of the most toxic substances including the death cap mushroom and to also help to heal the liver from viral injury such as from strains of Hepatitis. In addition, the silymarin in milk thistle may help protect liver cells during chemotherapy
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on April 17, 2021, 11:15:29 AM
https://pubmed.ncbi.nlm.nih.gov/11122561/ Nucleotides as immunomodulators in clinical nutrition