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Author Topic: My story/methylation issues and peyronies  (Read 294 times)

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Onemorestep

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My story/methylation issues and peyronies
« on: July 09, 2018, 09:24:48 PM »

Hi everyone,

So I’ll get to the point— I first developed Peyronie’s disease in late November of 2017. Some things that I believe either directly played a role in this or might have:

1) sex while not at full erection leading to slipping out and hitting the pubic bone twice
2) levetiracetam: reduces ability to maintain erection; possible link between AED’s and connective tissue disorders; alterations in methylation (...?)(a big question, I’ll get to this later)
3) Ativan- known to decrease levels of vitamins
4) gabapentin - known to decrease levels of vitamins

At first I had no idea what was going on. I had pretty awful pain but it was all after the sex. I iced for a few days before I started to notice a change in flaccid shape. A few short searches later and I discovered Peyronie’s disease.

I went to a few doctors but most of them said to take vitamin E and just wait and there was nothing they could do right now. So I turned to this forum. I was able to start a protocol of the following:

Vitamin E
Acetyl l carnitine
Pentox
Coq10

Unfortunately, very soon I experienced severe negative side effects from the acetyl l carnitine (rage, panic attacks) and the pentox (irritability, extreme insomnia, panic attacks). I don’t do well with xanthine drugs. I was only on them for a short while, and while it may have helped me during that time there is no way to tell.

Fast forward just a few months— I’m suffering from a large amount of anxiety from life stress and this disease. I decide to buy some sublingual niacin to help calm me down.

It works! I’m calmer.

But I also noticed an immediate increase in my pain. Strangely enough, I don’t have pain when I’m hard. Only while flaccid after erections. It was pretty constant but had improved somewhat until I took b3.

So I scrapped the b3 and pretty quickly I was back to my baseline. I didn’t think a whole lot of it to be honest.

Now, a few months later, I decided to withdraw from the gabapentin and Ativan. I figured, why not try and get as healthy as possible before (or during) my withdrawals to make them easier?

I had already had my gene mutations tested and knew I had MTHFR polymorphisms. So I decided to order a bunch of b vitamins to help address that. These included:

P-5-P
Hydroxocobalamin
NAC
Biotin
Methylfolate
Liposomal glutathione

I began this protocol while already in withdrawals.... and I was incredibly surprised to find two things:

1) even a small amount of methylfolate (15mcg) made my pain increase substantially
2) all the other vitamins... reduced the pain by up to 90 percent

Unfortunately, I could not tolerate these vitamins while in benzo withdrawal. If you don’t know anything about them, the general consensus is vitamins make them much much worse.

Fast forward a month. I am unable to tolerate the benzo withdrawals. My taper was fast and I am in excruciating mental and physical pain. I decide to start the keppra again. Within three days I noticed the following:

1) my hair began to fall out rapidly. This happened the first time on keppra as well so I was looking for it and it did not begin until exactly three days back on the medication (and I started on a small dose too)
2) my penile pain got a bit worse but not horrifically. It became more variable—throughout the day I would flip between feeling decent and having twinges of pain all over my shaft and a reacueance of traditional peyronies symptoms.

Fast forward a month. I’m extremely anxious from the withdrawals still, and now about my hair and peyronies pain. I decide to look into seeing if I can’t supplement vitamins and minerals to deal with the hair loss at least, as some using keppra have seen success stopping the hair loss with centrum silver. I buy some and notice something very interesting:

1) it completely takes away my peyronies pain
2) I have a return of erectile functioning
3) it aggregates the benzo withdrawals to the point I feel like I’m losing my mind

I’m forced to stop the vitamins. Miserable and dejected, I figure I’ll just wait out the keppra and see if the side effects stop with continued usage.

Two months later, the hair loss shows no signs of stopping. I’m also noticing my eyebrows and beard getting thinner. I decide to stop the keppra. Here are the effects from my stopping:

1) I decrease by 10mg (I was taking 750). I feel euphoric and elated.
2) three days later, my peyronies pain increases substantially. After a few days it gets better
3) I start to decrease by larger doses. The pattern is the same: a few days of elation and then crashing with substantially worse peyronies pain. And I mean SUBSTANTIALLY WORSE.
4) I finally get to a point where I’m reducing at 40mg per day and the peyronies pain seems to get a bit better as I get used to this titration, but I’ve rentersd the active phase and am starting to see changes in my girth (I have no length loss. Only uniform girth reduction throughout the shaft and a dent on the upper right shaft below the glands).

I fully withdraw from the keppra. The peyronies pain does not subside and I continue to see reduction as if I had just injured my penis (no injury was acquired during this time).

During this flare up I noticed two things:
1) glutamine makes the pain worse three days after taking it
2) taurine causes an immediate increase in pain

At this point, I’m baffled by this disease. I seem to have triggers from things and I have no idea why. So I decide to just wait it out.

The peyronies follows the same course it did time wise the first time I was in the active stage. About 4 months of rapid size reduction and pain followed by 6 months of milder pain and slow size reduction.

Then, about a month ago, I took a bit of centrum silver to see if my CNS could handle vitamins again. I didn’t have any issues, so I figured now would be the time to start dealing with my mthfr again. The reason that prompted this is ive been struggling with erectile dysfunction and nonexistent libido. I read that mthfr can cause erectile dysfunction due to high homocysteine levels. So I buy some methylfolate and, from the advice I found on sites like mthfr.net, decide to start a slow titration.

I began at 80mcg every other day. From my first dose, within 30 min, my peyronies pain worsens. It’s important to note here, when I’m in my active phase the pain I get is sharp and needlelike where as in the later phases it’s usually just soreness. Methylated b9 brings back the needles.

So I’m sitting there thinking “great”. It looks like increasing methylation makes my peyronies worse. But maybe it will get better!?

So I continue onwards. I decide to add p-5-p into the mix

Eureka.

The combination brings back not only my libido, but complete restoration of erectile functioning. In fact, it’s almost too good. One night I couldn’t fall asleep because I was waking up with constant erections right when I began to dose off.


I have an amazing week. I feel full of vitality and energy. I have some tingling and needle sensations in my penis but I ignore them. If it’s not making differences in my size I can live with it if the trade off is feeling absolutely wonderful. I have an emotional range I’m not used to normally. I’m very pro social when usually I’m kinda a hermit.

And then I crash.

Hard.

For the next week, I’m bedridden. Intense joint pain. Headaches. Irritability. Muscle pains. Introverted.


Not only that—Unfortunately, the peyronies pain is only worsening. Additionally, I’m starting to see the same sort of very hard flaccid state I usually get in my active phase. However, at other times, when it’s not hurting, I’m much fuller than normal. I mean MUCH fuller. I would wake up and look in the mirror and be shocked at how much I was hanging. The erectile ability I was so happy to regain is now a bane. The erections while I’m asleep are if not aggravating the peyronies, at the very least providing the pressure to keep me in pain.

Then I started NAC. My inital reason was simply to deal with the glutamate storm I had been experiencing and help treat the resulting insomnia. For this it worked very well at helping me fall asleep (I would wake up after 4 hours wide awake though). However it had another unintended effect: my peyronies pain stopped.

Here I am, trying to figure what this must be from. The only conclusion I can draw is my peyronies is worsened by excess glutamate. I mean the glutamine makes it worse. I have no explanation for the taurine or niacin (which for some reason I can tolerate now, niacin that is). But it’s the best answer I have. I figure this is good news! I can continue titration up on the methylfolate without worrying about the pain from peyronies!

So I stay on it. But soon mayhem begins:

1) extreme irritability
2) headache
3) fatigue
4) brain fog worsening
5) tingingling in my legs

I do some research and my symptoms line up with b12 deficiency. I take one tablet of methyl b12 and bam... I sleep for 14 hours straight.

When I wake, I’m astonished. This confirms it to me thag I became very suddenly b12 deficient. The tingling, irritability, and insomnia are all signs.

But the b12 didn’t seem like enough. I still had he headache and the rage. B12 helped a bit but it was all transient. Plus now, when I take methylfolate, I feel great for a few hours and then the peyronies pain is terrible for 24 hours after.

What am I to do? I’m completely at a loss for a full week. I’m still dosing methylfolate but I decide to take it down a bit and only dose 10mcg every day in an attempt to titrate even slower....


... and this makes everything so much worse.

WHAT IS GOING ON.

This is when I stumbled across a forum post in Phoenix rising by a member named Freddd. He described something he called “paradoxical folate deficiency”. This is where it gets a bit complicated but I’ll do my best to explain it. I’m well versed in pharmacology and basic neuroscience, but I have a huge dearth in knowledge about bodily processes outside the brain. I think this is where I went wrong—I was treating these supplements as if they were intended for the brain where it is best to go slow and steady. But this isn’t the brain, it’s the body. And the body wants, more than anything else food.

Paradoxical folate deficiency is essentially a form of refeeding syndrome. When the body is starving, it goes into a triage mode. Cells and entire systems begin to slow down and energy/vitamins and minerals are allocated to areas the body believes are most critical to survival. It’s an amazing thing really and we should all be glad for it because our ancestors wouldn’t have survived otherwise. The problem is when you begin to reintroduce nutrients to it, things can go a bit haywire.

In traditional refeeding syndrome, food is reintroduced and the patient seems to get better. However, after a couple of days they rapidly decline and in cases this can even cause death. Most people are aware of this now, that one shouldn’t gorge when they have been starved. Most don’t know why either. The reason is quite fascinating.

When food is reintroduced, the body turns off the triage systems layer by layer. However, if a system is turned on by increased caloric intake, the body suddenly finds itself in need of massive amounts of vitamins, micronutrients, and minerals. Months of backed up cellular activity and nutritional needs suddenly overwhelm the supply of minerals—in particular potassium. Anyone who knows about disorders like bulimia or anorexia are aware that often it isn’t the starvation that kills you but imbalances in sodium/potassium.

How does this relate to folate? Well in mthfr individuals, the body has essentially been half starving (not in the traditional caloric sense) due to its inibility to fuel cellular processes with adequate methylfolate. So when one reintroduced methylfolate, the same triage levels begin to lift like in a starving individual. And like a starving individual, while a small amount of nutrition may be able to lift the triage, a much larger amount of nutrition is required to heal the body and sustain the once dormant cells.

Once I read all this, I discontinued the NAC because I learned that it binds to methyl b12 and rapidly excretes it, thus creating a deficiency and turning back on triage or creating deficiency symptoms. I added large amounts of potassium, increases my methyl b12 dose several fold, and increased my methylfolate dose by over 100 times.

Within 24 hours, my symptoms faded. The headache passed and the peyronies pain didn’t increase. In fact, it CEASED. When it does return, I simply know it’s time to take another dose of methylfolate and or more b12/potassium. This stops the pain within a half hour.

So here I am. With each passing day, or have less and less instances where I have a spot of pain and need to dose. The regular dosing seems to be accumulating. Things are calming down on the peyronies front in ways I could only have dreamt of when this began. Hell I can masturbate again! 

The reason I’m writing this post is simply to tell my story and what has worked for me. I don’t know what causes Peyronie’s disease for everyone, but for me it is definitely tied to methylation. I’m curious if there may be others here who too have this as part of their etiology. It’s important to remember that methylfolate is involved in an absurd amount of bodily processes (I once read it’s over 800). I would not be surprised if either directly or through downstream disregulation that methylation causes issues with wound healing and scar tissue. I know for a fact it influences inflammation at the very least.

Ps: I left out a lot of symptoms and side effects from this process as they weren’t related to the peyronies. Should anyone else find themselves in a similar situation, I would be happy to go through the journey with them to answer questions or give dosing advice, but for now it’s extraneous information. Ive undoubtedly forgot to mention one thing or another—I still am healing from years of reduced cognitive ability and find my memory is short of perfect. I will continue to update my status as the weeks go by as a log for those interested.

Best,
Onemorestep
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Paolo

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Re: My story/methylation issues and peyronies
« Reply #1 on: July 10, 2018, 05:05:15 AM »

A fantastic post, thank you very much Onemorestep, look forward to updates  :)

NeoV, are you aware of L-Methylfolate for diabetic neuropathy?

You may find the Ray Peat forum interesting.
Paul.
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Onemorestep

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Re: My story/methylation issues and peyronies
« Reply #2 on: July 14, 2018, 02:45:04 PM »

You’re very welcome! I’m happy, albeit still tentitive, about reporting my progress so far with methylation.

I’ve titrate sup every time refeeding symptoms have come on (headache, joint pain, peyronies pain). Now I am on 45-50mg a day and have been for a few days. So far the headache hasn’t come back! The joint pain is very infrequent and is decreases with each passing day. And I haven’t experienced any peyronies pain in over a day. THat hasn’t happened to me pretty much... ever. It’s so odd to not have that reminder in the back of my head all the time.

I also do not get sore after I stretch or pump now.

My current supplements:

Methylfolate: 15mg x3 daily
methyl b12: 15-25mg; 5mg tablets throughout the day
Potassium: 1000 mg x3 daily

Going forward I will be adding other b vitamins and cofactors.
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Onemorestep

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Re: My story/methylation issues and peyronies
« Reply #3 on: July 21, 2018, 12:26:48 AM »

Still going strong! Honestly, I’ve completely forgotten about peyronies. I have zero pain even after things like masterbation :) not even a little sore. My penis feels 100 percent like it did pre peyronies!

Once I’m free of it for a few months, I’ll know I’m in the clear. For now, I’m just excited that I may be closing the door on this awful awful chapter of my life.

I’d love to see more people on here who have mthfr mutations speak up. There has to be quite a few—it effects a large portion of the population (30+%). Granted my case might be a fluke, as my peyronies started with a medication that screws with methylation, but who knows!
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