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 May 02, 2021, 04:05:34 PM
18 days into this Dr Amy Yasko methylation protocol and I have had two herpes virus flare ups from taking the protocol's supplements: cold sores on lips, spots on tongue, swollen gums, sore throat, stabbing pain in throat.

The supplements I'm taking can all cause detox reactions, Amy Yasko said 9 times out of 10 any symptoms from these support supplements are just detox symptoms.

I'm taking elderberry extract and lysine to counter these herpes symptoms.

I'm still on step one/basic groundwork so I haven't even started the methylation support supplements yet.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 11, 2021, 07:45:48 AM

My endo says one adrenal gland is producing way too much aldosterone. She prescribed something similar to (but not the same as) spironalactone.

If I were younger, doc would recommend surgery to remove adrenal gland.

Evidence points towards I also have aldosterone issues:

CYP1A2 homozygous mutation - consequences I have 5% activity compared to the wild type version - This gene is important for aldosterone and cortisol synthesis.

Curcumin causes me big issues and that inhibits this enzyme

Wake up some mornings with bad kidney pain, dilated pupils, speech issues, weak urine flow. Things like SAM E make it a lot worse.

Low potassium and sodium in hair , Low sodium in urine , funny because I have a high salt diet....

Kidney beef (glandular extract) helps stregthen the kidneys seems to stop my kidney pain.

Quote from Amy Yasko:

"Mutations can occur that affect the activity of the ACE (angiotensin
converting enzyme). Up regulations in activity of this enzyme lead to
higher than expected conversion of angiotensin I to angiotensin II. High
levels of angiotensin II in turn increase the level of aldosterone. High
levels of aldosterone lead to decreased excretion of sodium in the urine
and increased excretion of potassium in the urine. This suggests that low
sodium and high potassium on a urine essential element test may reflect
aldosterone excess and may indicate ACE up regulations. In animal studies
high levels of angiotensin II were correlated with increased anxiety and
decreases in learning and memory.

Support for ACE mutations in this pathway can include Kidney Support RNA,
OraKidney, OraAdrenal, Stress and Anxiety Support RNA. BioNativus
multiminerals can be used for a general mineral support.

Aldosterone can also be regarded as a stress hormone as its levels are
elevated in the blood following stressful situations. Consequently, even
in the absence of an ACE upregulation, situations of chronic stress can
result in increased levels of aldosterone causing sodium retention and
increased potassium excretion. This excess potassium is excreted provided
that the kidneys are functioning properly. In the event that kidney
function is compromised, it can lead to the retention of potassium in the
body.

While the initial effect of increased aldosterone is the retention of
sodium and increased secretion of potassium, over time, as the adrenals
become fatigued and unable to release adequate amounts of aldosterone
and/or cortisol the levels of potassium start to rise and sodium levels
may begin to fall in the body. When this occurs it can result in increased
retention of potassium.

In cases of imbalances in sodium and potassium excretion it is worthwhile
to consider adrenal and kidney support. Also reducing stress is helpful as
aldosterone is basically acting like a stress hormone.

General support for the adrenals and kidneys in the absence of specific
ACE mutations includes OraKidney, OraAdrenal, Stress and Kidney Support
RNA.

On a related note, licorice is often used for a number of healing
purposes. It should be recognized, however, that licorice inhibits
enzymes that break down aldosterone and cortisol and so its use may be non
ideal for those with imbalances in these regions. The use of licorice can
lead to increased levels of aldosterone. Licorice can also cause an
increased craving for salt, loss of potassium and increased water intake.
This may be related to its inhibition of the enzyme11 beta hydroxysteroid
dehydrogenase. Grapefruit juice also inhibits the activity of this enzyme.

Phosphatidyl serine is reported to help to control excess cortisol in the
body in addition to its role in the back door synthesis of methionine."


Title: Re: Iwillbeatthis treatment and case diary
Post by: demografx on May 13, 2021, 09:57:57 AM

My endo says one adrenal gland is producing way too much aldosterone. She prescribed...
[see below]

If I were younger, doc would recommend surgery to remove adrenal gland.

Evidence points towards I also have aldosterone issues......


I found the Rx I mentioned above in my post:
eplerenone
https://www.drugs.com/mtm/eplerenone.html
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 19, 2021, 04:26:17 AM
I'm sick of these stupid arrogant NHS GPs they are the absolute worst. I have had kidney dysfunction and pain since friday, purple feet, intense inter cranial pressure, rashes on chest and kidneys, muscle pain and spasms around kindeys and chest, irregular heart beat and palpitations, and this has all been so bad I haven't been able to do anything normal daily activities. I didn't realise my dads electrolyte supplement had 100% Daily Value of potassium citrate and it seems to have started from this I was also taking potassium phosphate drops tiny dose 4% of Daily value, I was also taking a quarter of lithium ortrate pill which also can affect potassium balance and kidney function, either way it started from taking these so probably either potassium was too high/ or there was an electrolyte imbalance.

When I eat meat, even a small amount triggers bad kidney pain, and last night I had a small steak and couldn't sleep last night as the pain was discomforting while lying down, I was considering going to hospital but didn't want to get in trouble for going for going for a non life threatening injury at 3am, I also didn't have nausea or chest pain at the time. I took benfotiamine last night (a much more bioavailable form of B1) and it seemed to make it better, woke up this morning with no pain now.
 
I couldn't get an appointment until today and the doctor I spoke to was so arrogant and dismissive he wouldn't want to do blood urea nitrogen test which actually looks at how your kidneys are breaking down protein, all he wants to do is a kidney function test which I've done before and urine protein test, which probably wouldn't show anything either as I have urine strips at home and they show protein is fine but Urine Gravity is elevated at the highest value indicating an electrolyte imbalance and kidney dysfunction. They didn't want to do an albumin test either, this is a more sensitive dipstick test which can detect a tiny amount of protein called albumin in the urine and should be taken if protein urine test is negative.

I never get taken seriously by these doctors and its a major problem, I told the doctors a few years ago that I have tried drugs like LSD, ketamine, weed, mdma recreationally a few times when they asked me and because I said that they put Drug abuse as one of the significant events on my medical file..... And I have medically unexplained on my profile when the tests they have done have mainly just been FBCs and never any kind of proper investigation. Because of these two things I can never make any progress or get taken seriously when I have an issue, what a joke... I never even try to get any help from them for POIS or autonomic dysfunction but things like kidney pain and infection symptoms I have been trying to get help with.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 23, 2021, 11:41:45 AM
On friday night I couldn't sleep because my calf was in so much pain, lying on my side or front made the pain a lot worse. The veins on my right calf had become thick and also was visible going round the calf, my other calf has nothing like this., the morning after the pain from my calf had gone. I attached a pic bellow. I was also getting tons of pressure in my abdomen which felt very tense and wasn't related to my bowels. I was in extreme distress and felt serious these whole nine days but it seems to be getting better now, I couldn't even do a simple activity like write a post or an email. I also had temporary feelings of coldness.

My leg never swelled up and the vein is only visible when standing, I'm unsure whether this is a blood clot or not. My feet were turning red and purply at the joints and toes and my heel soles also were sore to walk on at times. It felt like the fluid and blood pressure kept switching in my body from high to low.

All of this whole crisis was induced from taking potassium and not even large amounts, I suspect there is some dysfunctional potassium channels as potassium and sodium were low in hair and at the lowest range for urine, but blood shows potassium as low end of normal... Hair tests for minerals give a wider view of whats going on with your mineral balance as they can show whats been going on in a three month period rather than blood tests which just show you whats going on at one specific time and this can be affected by meals etc. Minerals also deposit in your tissues which is another reason why hair tests can be more helpful.

My dysautonomia from showers also had stopped when the first week of using potassium before this crisis started.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 23, 2021, 11:52:24 AM
On friday night I couldn't sleep because my calf was in so much pain, lying on my side or front made the pain a lot worse. The veins on my right calf had become thick and also was visible going round the calf, my other calf has nothing like this., the morning after the pain from my calf had gone. I attached a pic bellow. I was also getting tons of pressure in my abdomen which felt very tense and wasn't related to my bowels. I was in extreme distress and felt serious these whole nine days but it seems to be getting better now.


I had to get tests done privately for the first time as the NHS doctors were being completely unhelpful in wanting to do any proper investigation.

My kidney function tests are getting lower since the one I did a few months ago
now my  GFR (Glomerular Filtration Rate)is at 79 from a test this week, the test this week was also done when I didn’t have the kidney pain,   a few months ago my GFR was 89, before then 95.

The average GFR for my age group is 116, a GFR from 60-89 indicates kidney damage with mild loss of kidney function according to https://www.kidney.org/atoz/content/gfr.

NHS normal ranges are 70-130 so I guess my result isn’t low enough for them to investigate properly with scans and stuff..

“This test is a measure of how well the kidneys are removing wastes and excess fluid from the blood. It is calculated from the serum creatinine level using age and gender with adjustment for those of African American descent.  Normal GFR can vary according to age (as you get older it can decrease). The normal value for GFR is 90 or above. A GFR below 60 is a sign that the kidneys are not working properly. Once the GFR decreases below 15, one is at high risk for needing treatment for kidney failure, such as dialysis or a kidney transplant.”

Urine strips  at home showed my urine specific gravity was at highest value, this indicates significant dehydration and electrolyte imbalance, I told the GP this he didn’t even know what urine gravity was even though its a measure on every standard urine analysis strip they use everyday….

My lymphocytes dropped from 1.6 a few months ago to the lowest range value at 1.0 in this test a few days ago, this makes me think this is all some immunological reaction happening with my blood vessels. They dropped the same like this when I had swollen arteries on my head too a few years ago. I also have high Anti nuclear antibodies, and a high result for one of the phospholipid antibodies which could cause blood clots.


HAEMATOLOGY
Haemoglobin 157 g/L (--*) (130 - 170)
Red blood cells 5.12 x 10^12/L (-*-) (4.5 - 5.5)
Haematocrit 0.453 L/L (-*-) (0.40 - 0.50)
MCV 88.6 fL (*--) (83 - 101)
MCH 30.6 pg (--*) (27 - 32)
MCHC 346 g/L (---)* (315 - 345)
RDW 10.7 % *(---) (10.9 - 15.7)

MCHC and RDW were just slightly outside the normal ranges unsure if it means anything or not, usually my Full blood count shows nothing but the standard NHS test also doesn’t include MCHC.

Aldosterone SERUM/PLASMA 632 pmol/l See below

Reference range:
Resting < 640 pmol/l
Upright 61 - 970 pmol/l
Result from Referral Laboratory ID

Aldosterone was just inside the highest range, never had tested this before.

BUN and albimum were normal which makes me think, this is something rarer, there are two rare kidney syndromes Bartter syndrome and Gitelman syndrome. These syndromes impair the kidney's ability to reabsorb salt and cause imbalances in various electrolyte and fluid concentrations in the body.

Here is a case showing a person with sjorjens developing Bartter syndrome
https://www.sjkdt.org/article.asp?issn=1319-2442;year=2020;volume=31;issue=5;spage=1144;epage=1147;aulast=Fraj

This persons kidneys tests and electrolytes were all normal until they did a Electromyography

Blood electrolytes were normal, I wonder what urine electrolytes would have shown.

I've attached full blood test results bellow which show more things, I think the next step is to get a CT scan of abdomen privately however today my symptoms have improved a lot as I have been avoiding potassium and meat, yesterday I didn't eat any meals as appetite had gone. Kidney pain and leg, feet pain have stopped now I only have slight pressure in abdomen.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon on May 23, 2021, 04:17:37 PM
https://en.wikipedia.org/wiki/Urine_specific_gravity

dehydration
decreased blood flow to the kidney

It could be both. Decreased blood flow leading to dehydration. I'm thirsty when leaving a POIS episode. The abdomen... sometimes i feel my heart rate in there. Impression I get from vascular system in general: Inflammation in certain segments of blood vessels, spasm, bulging, tension in other parts, weird peristaltic motion. I think the vascular system is a major player. I encountered this disease, autoimmune cause which affects blood vessel segments: https://www.sciencedirect.com/science/article/pii/S009167492100734X

I wonder if low lymphocytes stem from infiltration of tissue, like blood vessel wall. Inflammation in wall could attract these cells. I now start to suspect that certain injuries in my body are artery related. Inflamed parts could affect peristalsis. But then again these pesky mast cells surround blood vessels as well. I get bubbly urine after symptomatic episodes.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 27, 2021, 01:14:53 PM
https://www.youtube.com/watch?v=jlv6nxrSWiQ&t=5269s - Personalized Medicine to treat Autism using off-label generic drugs

Good watch, we could use some of the treatments mentioned in this video for POIS. This man has successfully treated his son with severe autism by reading all the scientific literature on autism and using a personalised treatment therapy with off label generic drugs.

Some of the genes he mentioned at the end I realised I have mutations for such as:

SLC1A2 homozygous for both variants - encodes glutamate transporter GLT-1, responsible for 90% of glutamate uptake
GPX 1 - Glutathione oxidative stress
BDNF - homozygous
MTHFD1 - 3 distinct enzymatic activities related to folate. Causes disturbed methionine synthesis and autism

4 Features of Autism mentioned in the video:

Neuroinflammation
Channelopathies and DEGs
Oxidative Stress
Central Hormonal Dysfunction
 

Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on May 28, 2021, 04:11:24 PM
I bought the Nebula Genomics premium membership which compares your own DNA results to the large clinical studies done on genetics.

Most of the studies for each condition are comparing a combination of 50-200 gene variants and then ranking your risk based on variants with positive effect sizes and negative effect sizes.

I was in the 100th percentile  meaning very high genetic deposition for Primary biliary cirrhosis, Venous thromboembolism (blood clots), Primary open-angle glaucoma, Apolipoprotein B level, Mosaic loss of chromosome Y, higher vitamin D level.


99th percentile - very high genetic deposition for Melanoma, Cerebral cortex thickness, Migraine, bone mineral density, daytime napping, larger heart stroke volume

97th/ 96th percentile (very high genetic deposition) for Larger brain volume, pulmonary fibrosis, tourettes

89 - 92 percentiles - High genetic deposition for Lewy body dementia, Autoimmune thyroid disease, Alzheimer's disease,  larger left ventricular end-diastolic volume, larger cortical surface area, higher blood iron level, lung adenocarcinoma, squamous cell lung carcinoma,  retinal detachment


How they calculate your genetic predisposition "To calculate your genetic predisposition to venous thromboembolism we summed up the effects of genetic variants that were linked to venous thromboembolism in the study that this report is based on. These variants can be found in the table below. The variants highlighted in green have positive effect sizes and increase your genetic predisposition to venous thromboembolism. The variants highlighted in blue have negative effects sizes and decrease your genetic predisposition to venous thromboembolism. Variants that are not highlighted are not found in your genome and do not affect your genetic predisposition to venous thromboembolism. By adding up the effect sizes of the highlighted variants we calculated your polygenic score for venous thromboembolism to be 1.42. To determine whether your score is high or low, we compared it to the scores of 5,000 other Nebula Genomics users.We found that your polygenic score for venous thromboembolism is in the 100th percentile. This means that it is higher than the polygenic scores 100% of people. We consider this to be a very high genetic predisposition to venous thromboembolism. However, please note that genetic predispositions do not account for important non-genetic factors like lifestyle. Furthermore, the genetics of most traits has not been fully understood yet and many associations between traits and genetic variants remain unknown. For additional explanations, click on the column titles in the table below and visit our Nebula Library tutorial."

I'm considering getting my whole genome sequenced by this company,  23andMe and AncestryDNA only decode 0.02% of your DNA while Nebula decode 100%. This way I can look more in depth at my genes and access rarer ones. It costs 300 dollars to do this, the sequencing of the first ever human genome cost over $3 billion lol.
Title: Re: Iwillbeatthis treatment and case diary
Post by: Muon on June 07, 2021, 05:19:41 AM
I was in the 100th percentile  meaning very high genetic deposition for Primary biliary cirrhosis, Venous thromboembolism (blood clots), Primary open-angle glaucoma, Apolipoprotein B level, Mosaic loss of chromosome Y, higher vitamin D level.

https://en.wikipedia.org/wiki/D-dimer
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on June 21, 2021, 02:12:17 PM
Nerve Calm https://www.holisticheal.com/nerve-calm.html is the first supplement I've tried that gets rid of my POIS brain fog and my head feels nice and clear. I have had a few orgasms in the past few months and every time it has fixed the brain fog instantly.

You can wait till your POIS starts and then take one drop of nerve calm and the brain fog will go.

When I say brain fog I'm talking about the nasty neurological pressure brain fog feeling that causes autistic symptoms.

What does this supplement do? It's an RNA formula that is designed to bring down glutamate levels, I've tried other supplements for lowering glutamate like NAC, valerian, glutathione, magnesium etc and they do nothing for POIS. It makes sense as autism is largely to do with high levels of glutamate which is why POIS brain fog causes autistic symptoms.

What this nerve calm supplement won't fix is any serotonin, dopamine, noradrenaline imbalance like dilated pupils however it's not those imbalances that cause brain fog symptoms. Instead probably the serotonin, dopamine, noradrenaline imbalance initially triggers the glutamate storm which then causes the brain fog but it is not those things themselves that give the brain fog and autistic symptoms.

It was only when I ate lunch where I had meat which contains high amounts of phenylalanine, tryptophan and tyrosine where my pupils dilate and this causes dilated pupils and a little anxiety however no brain fog.

I am interested for more people to try this as I think it would help a lot of you guys. I have also spent thousands and thousands of pounds and lots of supplements and drugs with no success like this.

https://feelgoodnucleotides.com/ - For more specific information, resources, & scientific data on nucleotides.

"Nerve calm - Aids in the body’s ability to balance excitatory levels in the body"
Title: Re: Iwillbeatthis treatment and case diary
Post by: Quantum on June 21, 2021, 09:18:28 PM
Hi IWBT,

Looks like this Nerve Calm supplement works as a neuroprotector, against excitotoxicity.   I wrote many posts about this, some years ago.
You may find useful a post I wrote to help recognize monosodium glutamate and its many names on food labels.  As you can guess by its name, it is neurotoxic and can worsen the situation, and this ingredient is present in almost all industrial food, hidden under about 50 different names.  Be sure to avoid it completely ( the best way to do it is to go organic as much as possible, and let go of all junk and industrial food).   For more info on MSG, see https://poiscenter.com/forums/index.php?topic=2416.msg20374#msg20374 and https://poiscenter.com/forums/index.php?topic=2416.msg20377#msg20377 
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on June 22, 2021, 01:57:33 AM
Hi Quantum, I have followed a gluten free and MSG free diet for a few years now and it didn't make much impact at all on my POIS symptoms. The last six months I have also been eating only organic and has also hadn't had much effect on POIS. However I do agree it is important to avoid these things.

The most useful diet changes for me have been low GI carbs, low animal protein, low histamine, low fodmaps and avoiding high phenol foods.

I would also recommend this https://www.holisticheal.com/zinc-lozenges.html to go a long with the nerve calm. I have tried many zinc and zinc+ copper supplements (zinc methonine) and they all did absolutely nothing for me, this lozenge one actually makes a big difference maybe because its a lozenge or because of the other things inside the lozenge, or because of the form of zinc.

Zinc helps to balance excess calcium and excess calcium can work with glutamate to over excite nerves to death. Zinc also balances copper and high levels of copper has been implicated in ADD. Copper is the cofactor that works with the enzymes MAO A and MAO B to break down dopamine and serotonin, so high copper may engender a higher degree of degradation of these two neurotransmitters.

I've attached the symptoms of low gaba and high glutamate below at the end of this post.

Copied from Amy Yasko feel good nutrigenomics companion guide pdf:

"One of the key starting points for anyone on this program, in parallel with the focus on the Methylation Cycle is the recognition of the role of glutamate and GABA (gamma-aminobutyric acid) in chronic neurological conditions. In many cases, especially when Dr. Amy’s focus was adults in her private practice, merely working to balance glutamate and GABA was sufficient for a return to health. Excess glutamate has been illustrated to be a factor in a number of neurological conditions including Parkinson’s disease, Multiple Sclerosis, Huntington’s disease, ALS (Lou Gehrig’s disease), fibromyalgia and CFS amongst others. Balancing glutamate and GABA is the first step of the program. A number of individuals find that glutamate/GABA balance is all that is needed to relieve a number of symptoms. To understand this concept it is important to realize that excess glutamate relative to GABA can over excite your nerves. Glutamate works with calcium to stimulate your nervous system. Some stimulation is a good thing, but too much stimulation can leave you feeling nervous, twitchy and unable to sleep. The goal is to keep glutamate in balance so that you gain the benefits from it without having so much that your system is unbalanced.

One way to visualize the impact of excess glutamate in the body is like a car whose gas pedal is stuck, pressed to the floor. Speeding through life, without the ability to put on the brakes virtually ensures that you will either experience a major crash due to excessive speed or eventually run out of gas. Think of glutamate as the gas and GABA as the brake pedal. While you need the gas pedal to move forward in life, you also require the ability to use the brake as needed to be certain that you’re able to moderate your speed.

Recognize that we do need glutamate as it helps us to think and process information. But too much glutamate will exhaust your nerves to the point of creating health issues. Glutamate is considered an “excitotoxin”. Excitotoxins are compounds that have the ability to overexcite nerves to death. Before you even start to work on your Methylation Cycle you can begin by working on your glutamate/GABA balance. Look to eliminate food and supplement sources from your diet that increase glutamate beyond a healthy level. Look to support with nutrients that help to calm the nervous system including GABA, BeCalm spray, Nerve Calm Nucleotide RNA, valerian root, pycnogenol, grape seed extract, resveratrol spray, CoQ10 spray, All in One general vitamin. For those that are COMT V158M -/- consider theanine.

As with glutamate, calcium is something your system needs. But too much calcium will work with glutamate to overexcite your nervous system. One way to look at the interaction between calcium and glutamate is that glutamate is the gun and calcium is the bullet. In experiments looking at the impact of minerals on excitotoxin death it was found that “Calcium, it appeared, was the culprit. Apparently glutamate opened a special channel designed to allow calcium to enter the neuron, and it was calcium that triggered the cell to die...It appeared that excitotoxins, including glutamate and aspartate work by opening calcium channels, at least on certain subtypes of receptors. When those neurotransmitters are allowed to come into contact with the receptor in too high a concentration or for too long a period of time, the calcium channel gets stuck in the open position allowing calcium to pour into the cell in large amounts” (Russell Blaylock, Excitotoxins the Taste that Kills). Thus, you want to strike a healthy balance in terms of the level of calcium support you are using. Look to support with magnesium, zinc and lithium, which may help to balance excess calcium in the system.

According to Dr. Russell Blaylock, we are often unaware of the issues of excess glutamate until more than 80% of our neurons have been impaired. “What is so unusual about these diseases is that most of the people who are affected by them have lived perfectly healthy lives up until the time the disease strikes, which is usually later in life. The puzzle of what causes these particular neurons to start dying after decades of normal function has intrigued neuroscientists for many years...evidence began to appear indicating that even though the symptoms do not appear until the later years the pathological destruction of neurons begins much earlier, even decades earlier...the symptoms of Parkinson’s disease do not manifest themselves until over 80 to 90% of the neurons in the involved nuclei have died. The neurons didn’t all suddenly die at the same time but rather they slowly and silently deteriorated over many years. The same is true for Alzheimer’s disease. This is why prevention is so important.”

Addressing imbalances in the glutamate/GABA ratio as well as the calcium to magnesium ratio is what I consider the starting point, or Step One of this program. Even in the absence of nutrigenomic SNP information you can begin to work on addressing excitotoxicity in your system. This is a critical ongoing way of life, to keep glutamate and calcium in balance as you move forward to work on the other aspects of multiifactorial health conditions. Excitotoxins will continue to damage more nerves and
wreak more havoc in the body if they are not addressed. Therefore, the excitotoxin imbalance is the best place to start to put the pieces back together. Once excitotoxins are under control, it is easier to balance the rest of the body.

Key Definitions:
o Excitotoxin: A toxic molecule that stimulates nerve cells so much that they are damaged or killed. o GABA: A calming neurotransmitter that is essential for speech.
o Glutamate: The main excitatory neurotransmitter in the body, that is essential for learning and
for both short-term and long-term memory. o GFCF: Gluten free and casein free diet
Printed resources relating to excitotoxins:
• Dr. Amy‘s paper ?The Role of Excitotoxins in Autistic Type Behavior  https://www.scribd.com/document/279780608/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior which explains in detail the damage that excess excitotoxins can have on the body and how it relates to our behavior and health. Learning the importance of balancing GABA and glutamate and limiting calcium is essential to beginning the healing process.
   

DIET/GABA/GLUTAMATE
Removing excitotoxin triggers from the diet, simply involves reading labels and closely monitoring food and supplement intake to avoid excitotoxins. Some choose to follow a more restrictive diet eliminating Casein and Gluten.

While you may already be on the GF/CF diet (Gluten Free/Casein Free diet which Dr. Amy recommends), and limiting many excitotoxins in the diet there is an additional step to the diet that needs to be made in order for the inflammatory process to abate and the recovery process to begin. This additional dietary step/intervention is to remove/reduce excitotoxins from the diet and from supplements as well. Excitotoxins are: Glutamate, Glutamic Acid, MSG, Glutamine (which converts to glutamate), Aspartate, Aspartame, NutraSweet, and Cysteine. Foods that are especially high in glutamate are: soy, peas, mushrooms, tomatoes, parmesan cheese, yeast, milk, and wheat. A diet high in fermented foods and/or high protein may also contribute to this issue. It is important to be conscious of the total load of glutamate and to think of your ability to tolerate more glutamate, as if your cup is already full to the brim and about ready to overflow.

“In terms of diet, while diet is an important piece, in most cases no diet is perfect and no diet is ever
going to be enough for recovery and every diet has certain aspects that are counter to the program. Basically, fermented foods are naturally high in glutamate that is why they taste good and people want to eat them. The glutamate in fermented food is enough to actually cause allergic reactions is some cases. The normal bacteria associated with fermented foods can actually produce higher levels of glutamate. Where this program begins at Step One with the glutamate/GABA balance, the bottom line is a low protein, medium carbohydrate diet, and in general lower end fat, plus special digestive enzymes to process those fats. I also prefer low doses of specific sulfur donors (broccoli, garlic, wasabi etc.) and limit glutamate, adjusted based on biochemical levels.”

https://fdocuments.net/document/companion-guide-feel-good-nutrigenomics.html full PDF if people were interested.

Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on July 23, 2021, 03:27:54 PM
Interesting I was searching on the phoenixrising me forum and saw this: below they suggest Ruminococcus gnavus overgrowth is strongly linked to lupus. My GI 360 test showed I have an overgrowth of this bacteria Ruminococcus gnavus and I also was positive for salmonella. I've started treating both of these now with antibacterials that are targeted for killing those two things and I am getting very strong die off and immune symptoms. I also had high ANA antibodies which the main marker for lupus but was never diagnosed with it, high ANA indicates immune dysfunction or autoimmunity of some sort.

I also saw on my old OAT test clostridia bacteria can inhibit the DBH enzyme which is responsible for converting dopamine to noradrenaline/adrenaline and my HVA/VMA ratio suggested DBH is downregulated which explains the brain fog from showers and dysautonomia etc. Now I've read Ruminococcus gnavus is closely related to clostridia so maybe it is this which is downregulating my DBH and causing all my issues with dopamine and noradrenaline adrenaline.


Copied from phoenixrising.me forum:

"I have sent you this concerning Systemic Lupus, which is similarly being related to gut bacteria as are so many other diseases, but interestingly can be related to Fibromyalgia. But in Systemic Lupus one Bacterium is found in higher quantity, Ruminococcus gnavus. It seems to me that these problems with Bacterial Overgrowth are part of a negative cycle that involves Organic acids as neurotoxin, but also secondary immune dysfunction and autoimmune disease that could reinforce one another and cause a wide variety of symptoms."


ScienceDaily; Lupus strongly linked to imbalances in gut microbiome
Source:NYU Langone Health / NYU School of MedicineSummary:

The disease systemic lupus erythematosus (SLE) -- marked by the attack on joints, skin, and kidneys by the body's immune system -- is linked to an abnormal mix of bacteria in the gut.
The disease systemic lupus erythematosus (SLE) -- marked by the attack on joints, skin, and kidneys by the body's immune system -- is linked to an abnormal mix of bacteria in the gut. This is according to a new study led by scientists at NYU School of Medicine.

While bacterial imbalances have been tied to many immune-related diseases, including inflammatory bowel disease, arthritis, and some cancers, the authors of the current study say their experiments are the first detailed evidence of a link between bacterial imbalances in the gut and potentially life-threatening forms of SLE.
The new study, publishing in the Annals of Rheumatic Diseases online Feb. 19, showed that 61 women diagnosed with SLE had roughly five times more gut bacteria known as Ruminococcus gnavus, than 17 women of similar ages and racial backgrounds who did not have the disease and were healthy. Lupus is more common in women than in men.
Moreover, study results showed that disease "flares," which can range from instances of skin rash and joint pain to severe kidney dysfunction requiring dialysis, closely tracked major increases in R. gnavus bacterial growth in the gut, alongside the presence in blood samples of immune proteins called antibodies, specifically shaped to attach to the bacteria. Study participants with kidney flares had especially high levels of antibodies to R. gnavus.
The authors say the specific causes of lupus, which affects as many as 1.5 million Americans, are unknown, although many suspect that genetic factors are partly responsible.
"Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares," says study senior investigator and immunologist Gregg Silverman, MD. "Our results also point to leakages of bacteria from the gut as a possible immune system trigger of the disease, and suggest that the internal gut environment may therefore play a more critical role than genetics in renal flares of this all too often fatal disease," says Silverman, a professor in the departments of Medicine and Pathology at NYU Langone Health. He also suspects that antibodies to R. gnavus provoke a "continuous and unrelenting" immune attack on organs involved in flares.
Among the more practical consequences of the new research, Silverman says, could be the development of relatively simple blood tests to detect antibodies to leaked bacteria, which in turn could also be used to diagnose and track lupus progression and therapy, even in the disease's earliest stages. Current tests, he says, are often inconclusive and rely on signs and symptoms that only appear after the disease has already advanced.
Silverman, who also serves as associate director of rheumatology at NYU Langone, cautions that larger studies are needed to confirm how these bacteria may cause lupus. But if future experiments show similarly positive results, then it could result in shifts from current approaches to treating the disease, which focus on immune-suppressing anticancer medications to relieve symptoms and injury to the kidneys.
If the study team's results are validated, then some current treatments may actually be causing harm if they impair overall immune defenses against infection.
Instead, Silverman says, future treatments could include inexpensive probiotics or dietary regimens that impede R. gnavus growth and prevent flares. Fecal transplants from healthy individuals would also be a possibility.
Alternatively, Silverman says, new treatments could also be used to promote growth of Bacteroides uniformis, bacteria thought to hinder growth of R. gnavus in the gut and whose numbers decreased by as much as fourfold in study participants with lupus when compared to those without the disease. Experts say that over a 1,000 different types of bacteria make up the human gut microbiome.
For the study, researchers analyzed blood and stool samples from participants. Researchers were surprised to find strong immune antibody reactions to R. gnavus in the blood because the gut lining prevents the bacterium from escaping to other parts of the body. Researchers say this suggests that small pieces of the bacteria, known as antigens, must have "leaked" into the gut to trigger the immune reaction."
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on July 24, 2021, 03:57:29 PM
Someone on phoenix rising messaged me this after looking at my hair metals and mineral test which showed I was extremely low in potassium and sodium.

"Sorry for the delay in replying.

I looked at your hair test and interpreted it with Andy Cutler's Counting Rules. To interpret the test, you ignore the toxic metals section and look at the minerals section to see if you have deranged mineral transport.

Your test is showing positive for mercury screwing up your mineral transport. In fact, this is a "screams mercury" test, as you meet at least 3 counting rules. You only need to meet 1 rule to be positive for mercury.

It looks like arsenic could also be an issue. Arsenic screws up your Kreb's/citric acid energy cycle. I have this too.

I'm not surprised that you have gut issues. You may not be able to make much headway without removing mercury.

Do you have, or have you ever had, mercury amalgam fillings?"
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on July 27, 2021, 06:29:49 AM
I have since developed suspected stomach ulcers (90% sure) from this health crisis: I found out afterwards that potassium supplements can cause holes in stomach, I also took two asprins in one night and was taking cell food mineral supplement that contains Deuterium sulfate. None of these in the doses should cause anyone ulcers but I think the combination of the three while having low secretory IGA caused an issue for me. It was specifically after the night of taking the two asprins when I started waking up with bad stomach pain.

All 3 of those things above gave me bad stomach pain and soreness and I started waking up with a very sore stomach every morning for a month but especially if I hadn't eaten dinner. And fats like butter would make the pain a lot worse.

After over two months of these stupid nhs doctors not helping me with treatment or testing even though it was obvious I had an ulcer, my GP refers me to A&E because I have blood in my mucus (I've seemed to have this on and off for a 7 months) but it wasn't an emergency so I was thinking it would all be a waste of time.

Anyway I got lucky and saw a good doctor at A&E and he said I have a classic case of a gastric ulcer and prescribed me a PPI - Omeprazole and also advised I should take gaviscon advance liquid after meals. Gaviscon liquid is a much more effective antacid at stopping the stomach acid than tablets which he said don't really work, this is much stronger.

With regards to the PPI Omeprazole it seems a lot of people have bad experiences with it, it can cause sibo, 28 fold risk increase of developing kidney disease, increase risk of stomach cancer and people seem to get lots of bad symptoms with it.

Maybe the Omeprazole will be fine if I take only for a short period but I'm gonna try only the Gaviscon advance with natural options like DGL, slippery elm, probiotics first and will use the Omeprazole as a last resort. Natural supplements alone though weren't good enough for me I definitely needed the Gaviscon advance to stop the excess stomach acid.

I tried the Gaviscon last night it gets rid of autistic symptoms, my voice is a lot deeper and speech and anxiety a lot better. I also woke up with a hard erection so maybe this somehow increased testosterone in a way, I also just feel much much more confident than normal. Hopefully these good effects last....

https://www.reddit.com/r/GERD/comments/gj3bre/gaviscon_advance_makes_me_feel_normal_againwhy_idk/

I have a very similar experience to this guy, he said maybe its protecting the vagus nerve.

The Gaviscon advance liquid does contain aluminium which is bad but I feel good from it so I'll continue taking. Natural supplements for ulcers weren't having this effect on me.
Title: Re: Iwillbeatthis treatment and case diary
Post by: berlin1984 on July 27, 2021, 07:21:27 AM
Is a gastric ulcer the same as a stomach ulcer?

You might be interested in the mastic gum thread in the forum here.

https://www.webmd.com/vitamins/ai/ingredientmono-565/mastic
"Stomach ulcers. Taking mastic powder by mouth for 2 weeks seems to reduce symptoms and improve healing in people with intestinal ulcers. Also, early research shows that taking mastic powder by mouth for 4 weeks improves these outcomes in people with stomach ulcers."


(disclaimer: not adivising you to take mastic gum or disobey your doctor, just helping you to get more information)
Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on July 27, 2021, 07:49:25 AM
Yeah they're the same thing, thanks I was actually planning to try some mastic gum already.

Is a gastric ulcer the same as a stomach ulcer?

You might be interested in the mastic gum thread in the forum here.

https://www.webmd.com/vitamins/ai/ingredientmono-565/mastic
"Stomach ulcers. Taking mastic powder by mouth for 2 weeks seems to reduce symptoms and improve healing in people with intestinal ulcers. Also, early research shows that taking mastic powder by mouth for 4 weeks improves these outcomes in people with stomach ulcers."


(disclaimer: not adivising you to take mastic gum or disobey your doctor, just helping you to get more information)
Title: Re: Iwillbeatthis treatment and case diary
Post by: aswinpras06 on July 29, 2021, 04:48:21 AM
Thanks for posting about Gaviscon providing you good relief.

 In India Gaviscon contains sodium alginate, sodium bicarbonate and calcium carbonate.  What are the ingredients in the Gaviscon you use.  I tried it a few months back but only for 2 days. It helped my gerd but not with constant inflammation in my gut.   Hope it continues to work for you.



Title: Re: Iwillbeatthis treatment and case diary
Post by: Iwillbeatthis on July 29, 2021, 06:14:55 AM
Thanks for posting about Gaviscon providing you good relief.

 In India Gaviscon contains sodium alginate, sodium bicarbonate and calcium carbonate.  What are the ingredients in the Gaviscon you use.  I tried it a few months back but only for 2 days. It helped my gerd but not with constant inflammation in my gut.   Hope it continues to work for you.


This is different to the regular Gaviscon this article says its ten times stronger than regular gaviscon https://www.refluxgate.com/gaviscon-advance. I have big concerns about the aluminium the advance version contains though, aluminium can lower bh4 levels and I also did wake up feeling rough from it the next day. Also aluminium is strongly linked to neurological diseases.

"Why Gaviscon Advance is Superior to Regular Gaviscon

It is important to know that Gaviscon’s formula varies from country to country.

The US version is not very useful. The formula sold in the UK is much more effective against reflux."
Title: Re: Iwillbeatthis treatment and case diary
Post by: Quantum on July 29, 2021, 07:49:35 AM
Thanks for posting about Gaviscon providing you good relief.

 In India Gaviscon contains sodium alginate, sodium bicarbonate and calcium carbonate.  What are the ingredients in the Gaviscon you use.  I tried it a few months back but only for 2 days. It helped my gerd but not with constant inflammation in my gut.   Hope it continues to work for you.


This is different to the regular Gaviscon this article says its ten times stronger than regular gaviscon https://www.refluxgate.com/gaviscon-advance (https://www.refluxgate.com/gaviscon-advance). I have big concerns about the aluminium the advance version contains though, aluminium can lower bh4 levels and I also did wake up feeling rough from it the next day. Also aluminium is strongly linked to neurological diseases.

"Why Gaviscon Advance is Superior to Regular Gaviscon

It is important to know that Gaviscon’s formula varies from country to country.

The US version is not very useful. The formula sold in the UK is much more effective against reflux."
Here in Canada, we have a mixed situation:  Gavison tablets are aluminum-free ( alginic acid, plus magnesium carbonate in the "Max Relief" version),  but the liquid version contains aluminum, similar to Maalox. I only use the tablets, I ceased years ago to take anything containing aluminum, along with anything unsafe or downright harmful for health like artificial colors, preservatives agents, monosodium glutamate, aspartame, HFCS, and so on. 

Aluminum is not safe to ingest, in my opinion.  It is suspected as a contributing factor to some cancers, and also in
Alzheimer disease.  It has no role natural in the organic chemistry of the body, so not "supposed" to be in there.