Author Topic: MTHFR mutation  (Read 5231 times)

FernandoPOIS

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  • 37 year old. POIS Since I was 28. Vagus Nerve Heal
MTHFR mutation
« on: June 24, 2018, 08:43:21 AM »
I believe everyone with POIS should have a genetic blood test to see if they have the problem with MTHFR. According to what I read here in the forum and typical physical characteristics I believe that many (or most of us) should have the problem related to the enzyme and consequent metabolism. I will ask my doctor for a request for this test. Treatment with a diet targeting this problem associated with treatment for the vagus nerve should help most of us.
My POIS only happens with masturbation. Normal sex does not generate POIS symptoms. When I have no back pain and I masturbate the POIS symptoms are weaker and last for at most 2 days. My POIS is related to the health of my thoracic and cervical spine. Postural and Aerobic Exercise heal the vagus.

notmythirdaccount

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Re: MTHFR mutation
« Reply #1 on: June 25, 2018, 01:59:37 AM »
I believe everyone with POIS should have a genetic blood test to see if they have the problem with MTHFR. According to what I read here in the forum and typical physical characteristics I believe that many (or most of us) should have the problem related to the enzyme and consequent metabolism. I will ask my doctor for a request for this test. Treatment with a diet targeting this problem associated with treatment for the vagus nerve should help most of us.

I have this mutation. For about 6mo to a year I've focused on cleaning up my diet and working on methylation. My overall health has definitely improved, but my POIS symptoms still occur.

I do notice that I recover quicker, which is great. I suppose it's made my symptoms manageable.

Muon

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Re: MTHFR mutation
« Reply #2 on: June 25, 2018, 04:44:31 AM »
I have this mutation.
Have you been tested for this?

notmythirdaccount

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Re: MTHFR mutation
« Reply #3 on: June 25, 2018, 11:20:06 AM »
I have this mutation.
Have you been tested for this?

I have. I ran a 23andme kit and used the data on 5 or so platforms. I'm homozygous on the C677T gene and a couple of others that affect methylation.

CuriousCharacter

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Re: MTHFR mutation
« Reply #4 on: July 24, 2018, 01:17:08 PM »
I haven't done enough research to know what most of this means, but here are my methylation results:

  • MTHFR A1298C - heterozygous
  • VDR bsm - homozygous
  • COMT V158M - heterozygous
  • COMT H62H - heterozygous
  • MTRR A66G - heterozygous

certainlypois2

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Re: MTHFR mutation
« Reply #5 on: April 01, 2020, 01:49:29 AM »
Millstone:
true answer at the moment is just full abstinence, and taking one day at a time.

The reaction I have is so severe that its debilitating, no matter whether it's from sex or masturbation.

I think it's in part due to how addicted I was to pornography, and I may be dealing with some glial-priming effects as well in the brain, and / or dopamine & opioid receptors that are kindled / over-excited.

For me, the POIS symptoms feel like extreme Alcohol / Benzo withdrawal, which is a nightmare on earth. Tremors, insomnia, hyper-vigilance, bi-polar reactions, depersonalization, burning blood vessels, pain in every part of my body, you name it.

Another element that could be at play is psychosomatic, because now I am correlating sexual activity / gratification with an immense amount of guilt / shame due to my focus on overcoming this addiction. I cut porn cold-turkey back in September of last year.

For me, I think it's a lot of comorbid issues:

* Gut Health / IBS (hence part of the supplement stack + probiotics + new supplements on the way)
* Immune Health (hence the other part of the supplement stack + diet changes)
* Viral Load / Contracting HSV1 within the past 5 years (re: detox foods)
* Radical change in my diet mid-last year (went very clean, very abruptly)
* Abruptly stopping omeprazole (used daily for over a decade)
* Abruptly stopping pornography
* Experiencing intense food poisoning middle of last year / ER Doctor put me on Bactrim which I had an extremely adverse reaction to (and may have wiped out my microflora)
* Prostate Damage, which is inflamed and may be infected (occurred middle of last year, thought nothing of it, visiting a urologist next week)
* Dealing with cognitive swings (anxiety / depression / anhedonia) due to dependence-like withdrawal of my pornography addiction (balancing dopamine / opioid receptors)
* Anxiety-induced Hypochondriasis (hence all of the above)

I developed POIS in the middle of last year, after all of the above happened.

Other stressors can also now trigger POIS-like symptoms for me including sodas (excessive sugar / caffeine) and alcohol (half a beer will do it).

certainlypois2

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Re: MTHFR mutation
« Reply #6 on: April 01, 2020, 01:51:10 AM »
So, some updates...

I got more blood work back.

One of the tests performed was for genetic mutations indicating problems with MTHFR.

From the internet:

"What is an MTHFR mutation? Methylenetetrahydrofolate reductase, or MTHFR, is an enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes for this enzyme has the potential to mutate, which can either interfere with the enzyme's ability to function normally or completely inactivate it"

My test shows positive for one copy of the A1298C variant.

What this means is that I am not methylating properly (converting nutrients from my diet into active vitamins, minerals, and proteins my body can use).

Here is an article from Parsley Health (who are also my functional docs) on the issues relating to MTHFR gene mutations:

https://www.parsleyhealth.com/blog/mthfr-mutation

Here's a video on methylation & homocysteine levels:
https://www.youtube.com/watch?v=h-5ARmugr54

Here's what stands out to me:

* MTHFR malfunctions cause deficiencies, particularly in B vitamins, manufacturing adequate neurotransmitters, and neurotransmitter protection
* low levels of vitamin B6 and B12 are risk factors for mild cognitive impairment
* Changes in the body's ability to control homocysteine levels
* Elevated homocysteine is related to neuropsychiatric issues
* Problems with detoxification
* Problems controlling free radicals and oxidative damage
* Related "gut dysbiosis" problems

This old thread from 2018 is very relevant:
https://poiscenter.com/forums/index.php?topic=2728.msg24633#msg24633

My blood work shows I am also very high in Estrogen levels. It seems poor methylation can form a build-up of estrogen as a byproduct (and probably my reduced sexual activity).

https://www.mthfrexperts.com/living-with-mthfr-estrogen-dominance/

My previous pornography addiction may have been a byproduct of my body trying to control and balance my hormones, neurotransmitter deficiencies, and active methylation issues.

From what I am seeing, the cascade of hormones released from orgasm is compounding everyone's methylation problems, which may be due to a hormonal and / or immune imbalance in the body.

If the body is actively fighting a chronic infection, it may not be able to deal with the flood of hormones released from orgasm. The body then likely doesn't have enough stores of vitamins to repair and replace the vial nutrients lost during orgasm and others needed to replenish sperm and related hormones. This correlates to people being 100% cured after removing chronic infections or toxins, such as mercury amalgams, wisdom teeth, or colon dysbiosis (coffee enemas & probiotics). Fits the equation outlined in this likely well-known video:

https://www.youtube.com/watch?v=ISnnag8UOGw

All of this also aligns with Nanna1's scientific breakdown of the cascade, as well as the supplements recommends to correct:

https://poiscenter.com/forums/index.php?topic=2502.0

Supplementing with things like NAC, SAMe, Taurine, Niacin / B6, and Testosterone are ways of improving the methylation process and / or balancing the hormonal & immune response dysfunctions that people are experiencing from ejaculation. Things like Grapefruit Seed Extract have a similar effect to antibiotics which help in fighting active bacterial, fungal or parasitical infections.

The vasoconstrictors he recommends may help prevent histamines from creating permeability in the blood vessels that cause oxidative damage from mast cells / white blood cells radically attacking any dormant viral load you may have throughout your body (triggering the pain and myalgia symptoms).

All of this is likely because there is an imbalance in the body that is preventing these typical methylation processes from happening naturally. Everyone may have different imbalances that they need to treat.

My guess on "my personal" imbalance (that peaked last year as symptoms surfaced) is gut dysbiosis, low stomach acid, chronic infection (which I have yet to identify), viral load, and / or toxins (likely a mix of everything).

I have an appointment with my functional doctor from Parsley Health in April to go over all of my blood work and dig into treatment. I will report back as I learn more.

In the meantime, my protocol will focus on healing the gut, reducing inflammation, reducing stress, repairing neural damage, abstinence, and staying on the stack of antioxidant foods and supplements I noted above.

Always been skeptical of the whole MTFHR stuff, personally, though I did try nanna's stack and tried methylation support with no real improvements.

I think this belongs in another thread, this thread should be for those interested in Mercury Toxicity, maybe the admins could separate the last few messages?

drop247

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Re: MTHFR mutation
« Reply #7 on: April 01, 2020, 08:11:10 AM »
Keep us posted on your prostate diagnosis please.

Muon

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Re: MTHFR mutation
« Reply #8 on: April 01, 2020, 08:18:26 AM »
Millstone:
* Prostate Damage, which is inflamed and may be infected (occurred middle of last year, thought nothing of it, visiting a urologist next week)

I bet there is no infection and never was. Seminal plasma IL-8 (sIL-8) could be measured during inflammation. These cells (and probably more) are able to secrete IL-8 inside prostatic tissue: Mast cells, epithelial cells, stromal cells.

"There is increasing evidence that sIL-8 may represent the main pro-inflammatory chemokine related to MGT infection/inflammation. In particular, sIL-8 appears to be strongly related to inflammation of the prostate, while evidence for a correlation with seminal vesicles and epididymis inflammation is emerging. We think that sIL-8 will have a progressive important clinical role, not only identifying subjects with and/or corroborating clinical/ultrasound findings suggestive of MGT infection/inflammation, but also helping to start a specific therapy and monitor the course of inflammatory diseases."
« Last Edit: April 01, 2020, 08:58:25 AM by Muon »

millstone

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Re: MTHFR mutation
« Reply #9 on: April 01, 2020, 01:20:07 PM »
Update...

I met with the Urologist who did another prostrate exam. From his perspective, no inflammation and the size is normal for someone my age. Checked my urine and didn't see any issues there either.


I bet there is no infection and never was. Seminal plasma IL-8 (sIL-8) could be measured during inflammation. These cells (and probably more) are able to secrete IL-8 inside prostatic tissue: Mast cells, epithelial cells, stromal cells.

"There is increasing evidence that sIL-8 may represent the main pro-inflammatory chemokine related to MGT infection/inflammation. In particular, sIL-8 appears to be strongly related to inflammation of the prostate, while evidence for a correlation with seminal vesicles and epididymis inflammation is emerging. We think that sIL-8 will have a progressive important clinical role, not only identifying subjects with and/or corroborating clinical/ultrasound findings suggestive of MGT infection/inflammation, but also helping to start a specific therapy and monitor the course of inflammatory diseases."


Muon - thank you so much for providing this reference. I will discuss it with the functional docs to see if we can dig in further.

From your perspective, why do you think there is no infection if this is relevant? What do you think could have triggered something like this?
« Last Edit: April 01, 2020, 01:26:39 PM by millstone »

Muon

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Re: MTHFR mutation
« Reply #10 on: April 01, 2020, 02:12:50 PM »
Because many poisers here who claim to have prostate infection can't provide evidence of prostate infection. Secondly, they have a plethora of symptoms which are not related to prostate infection. Another option causing prostate inflammation would be inappropiate mast cell activation. Btw the article is about seminal plasma IL-8 and not blood serum or blood plasma IL-8, just to be clear.
« Last Edit: April 01, 2020, 02:17:14 PM by Muon »

drop247

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Re: MTHFR mutation
« Reply #11 on: April 01, 2020, 09:49:25 PM »
Update...

I met with the Urologist who did another prostrate exam. From his perspective, no inflammation and the size is normal for someone my age. Checked my urine and didn't see any issues there either.


Were you in a POIS state when you had your examination?

millstone

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Re: MTHFR mutation
« Reply #12 on: April 02, 2020, 01:35:44 PM »

Were you in a POIS state when you had your examination?

Good question, and good point. I was not.

I was likely in more of a POIS state when my PCP checked me than when the Urologist checked me. Last time I orgasmed was at the beginning of March, so each passing day the symptoms progressively improved.

I spoke with an endocrinologist today, and I went over a lot of the literature from nanna1 in this forum, specifically about the POIS cascade, over-expression of a1a receptors, and how the trigger is rising norepinephrine levels.

The doctor was receptive and suggested an Rx alpha blockers to see if it would help treat the symptoms while I work with other doctors on root cause.

I am also deathly afraid of trying an orgasm again, as the last round has me in such a panic attack I literally hand-wrote a 4 page suicide note. It was not fun. The reaction for me has been progressively getting worse every time.

At this point, I am a month in on abstinence, and the past 2 or 3 days have been the best feeling days that I can remember in over a year from when this started (physically / mentally / spiritually).

Over the past week I've also seen added success with the following:

* Daily Qi Gong Exercise (20 min. session once or twice a day)
* Riding the bicycle (at least 30 min a day, several days a week)
* Quality Sleep (at least 8 hours true sleep, sometimes up to 10 hours in bed to make it happen)
* Started dynamic neural retaining program (http://retrainingthebrain.com)
* More Carbs in the diet
* Added Curcurmin supplements into the stack (not sure if this is has an impact, but noting it)

I am thinking of doing at least 90 days abstinence to see where things land.

I am also now waiting on lab tests to come back for toxins (mold / pesticides). Functional doc ordered me a very comprehensive 3 day stool test as well:

https://www.gdx.net/product/gi-effects-comprehensive-stool-test

Recent blood work for me shows elevated Estrogen and elevated DHEAS.

I really feel like I am chasing ghosts. The most simple explanation I can think of anymore is that I could just have really over-stressed my central nervous system and my opioid receptors, and I really need rest / destress to get me back to a healthy baseline.

drop247

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Re: MTHFR mutation
« Reply #13 on: April 02, 2020, 04:07:55 PM »
I am waiting for an appointment with a urologist. I will attempt to be in peak POIS state during the appointment and will report back the results. If prostatitis is indeed involved in POIS it seems transient and triggered by orgasm.

drop247

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Re: MTHFR mutation
« Reply #14 on: April 21, 2020, 09:46:23 AM »
I had a telephone appointment with the urologist today. He suggested prescribing a low dose SSRI (Zoloft) at 25-50 mg per day. He says the condition sounds immunological in nature and has had 2 other patients with the same condition. SSRI helped one. I don't know if I'm convinced it will help other than simply masking symptoms. Also due to my profession my medication use is restricted and off-label use of Zoloft is unlikely to be approved. What do you guys think?

millstone

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Re: MTHFR mutation
« Reply #15 on: April 22, 2020, 02:56:58 PM »
I had a telephone appointment with the urologist today. He suggested prescribing a low dose SSRI (Zoloft) at 25-50 mg per day. He says the condition sounds immunological in nature and has had 2 other patients with the same condition. SSRI helped one. I don't know if I'm convinced it will help other than simply masking symptoms. Also due to my profession my medication use is restricted and off-label use of Zoloft is unlikely to be approved. What do you guys think?

I started 10mg Prozac late February.

It's definitely helped with the depression, though I am combining it with a handful of other things at the same time (abstinence / vitamins / supplements / anti-oxidants / detox protocol).

All that said, I do not believe Prozac will help whatever underlying chronic condition is causing POIS. It just helps with the depression byproduct / neurotransmitter burnout that happens from POIS. It doesn't actually fix POIS.

I personally tried LexaPro 20mg and day 1 I had a strange / adverse reaction. I was on Prozac back in high school so I feel like that was better. Doc switched me and now been taking it regularly.

drop247

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Re: MTHFR mutation
« Reply #16 on: April 22, 2020, 06:25:01 PM »
Thanks millstone. I'm going to pass on the SSRI for now. I'll see if he can offer any other options.

swell

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Re: MTHFR mutation
« Reply #17 on: April 26, 2020, 04:30:09 AM »
I tried an SSRI for a day.  I experienced a very severe headache (the likes I have never seen), so I stopped.  You can try an SNRI and even better a dopamine agonist like Vyvanse (that I take), and I bet you'd be thanking me for the euphoria :).

So about the Methylation, here are my results:
MTRR  rs1801394(G;G) --> increased risk for hyper-homocystenemia and abnormal choline metabolism
MTHFD1 rs2236225(C;T) --> requires increased choline intake beyond.
My MTHFR is normal: rs1801131(A;C), rs1801133(C;C)

Does this mean I am under-methylator?

Thanks millstone. I'm going to pass on the SSRI for now. I'll see if he can offer any other options.
POIS Free, 1+ yrs despite daily o's (with occasional pois episodes)
Pois symptoms: Peripheral (Skin: Urticaria, dryness, pale blotchy skin), Exasperation of: [Nerve weakness, Muscle weakness + Mental (CNS: Brain Fog, Irritation, Isolation, Speech lethargy, Anxiety)].
Other conditions: ASD, ADD, GA

Muon

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Re: MTHFR mutation
« Reply #18 on: April 26, 2020, 04:45:33 AM »
I tried an SSRI for a day.  I experienced a very severe headache (the likes I have never seen), so I stopped.
Same here even on the lowest possible dose. Where inside your head do you feel the pain the most?

swell

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Re: MTHFR mutation
« Reply #19 on: April 26, 2020, 08:40:24 PM »
That headache I experienced was totally unique.  Extremely heavy, crushing pressure in the middle of my skull.  Maybe there is no relationship, but just to share on a related note, when I take Vyvanse (which is the best god send treatment, I feel), I do experience I mild headache, for which I learnt that if I take a small dosage of IRON daily in morning, then I dont experience that mild headache and I get to be able to enjoy the benefits of Vyvanse.  Plus I noticed by taking Iron, I also dont experience hair loss. 

All this makes me feel, that a) we POIS'ers are very sensitive, which actually can be good, because as soon as our body experience an insult/error, we get notified immediately.
b) we have metabolic path impairements.  Because we can feel our glitches much more louder than the average person, it gives us an advantage, where provided we research and learn, we can actually circumvent and prevent diseases which would emerge over next 10-20-50 years as a result of daily insults/errors. 
c) POIS is nothing but a 7 day curfew, where our body is telling us, that 'ease on Joe, take it easy for next 7 days, your body needs to redirect its essential resources away for pressing matters'. 

I tried an SSRI for a day.  I experienced a very severe headache (the likes I have never seen), so I stopped.
Same here even on the lowest possible dose. Where inside your head do you feel the pain the most?
POIS Free, 1+ yrs despite daily o's (with occasional pois episodes)
Pois symptoms: Peripheral (Skin: Urticaria, dryness, pale blotchy skin), Exasperation of: [Nerve weakness, Muscle weakness + Mental (CNS: Brain Fog, Irritation, Isolation, Speech lethargy, Anxiety)].
Other conditions: ASD, ADD, GA