Melcangi study and Methylation treatment?

Therapeutic Efforts
#1

I came across this article that covers the same condition that Melcangi describes as affecting pfs victims, which is Methylation, and goes on to describe how to treat it.

Interestingly, much of what’s been described has been suggested here as sometimes helping with our symptoms. I’m curious if others see the same.

Also, at the end of the article, Dr. Kara Fitzgerald is listed as a Methylation expert, with a practice in Connecticut. Would it be more appropriate to connect Melcangi with Fitzgerald, or to reach out directly?

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#2

Well as the article states, methylation is a necessary process for everyone’s bodies. So attempting to stop it isn’t necessarily a good approach. What we need to do is address the genes that have been methylated, and those genes specifically, rather than attempting to mess around with the global methylation cycle. Since Melcangi only offered us confirmation of SD5AR2 being methylated, and it doesn’t appear that that alone would cause all of our symptoms, (because if that was all that caused problems, supplementing exogenous DHT would solve our problems, which it hasn’t) we probably need to do more digging and find out what other genes have been affected before doing anything.

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#3

U can wait for years and years before there will be technology availabe with which u can demethylate specific genes dude. If u think CRISPR will do this in the future, check this out: https://www.youtube.com/watch?v=ZrEweAhlU4g Demethylating globally isn’t as bad as u may think. It’s now used in cancer treatments, and those agents are indeed toxic. But stuff like RG108 isn’t, and as I said, demethylating globally is something ur body can handle. It’s not like it will always stay in the demethylated state. Within 4 weeks levels turn back to normal. The chance we got is that we demethylate this erroring gene, and that it will not go back to the PFS state, but go back to the former homeostasis. Wishfull thinking, but worth trying.

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#4

Also, very interesting, they mention antibiotics as a methylation inhibitor. I know lots of people on the PSSD forum and here get windows from it. Never knew they did this.

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#5

Hi man I just made a week of antibiotics and feel my normal me (cured) just when I finished the antibiotics I felt horrible.

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#6

So u felt horrible while on them if i understand it right?

#7

I feel cured while on them. feel bad after leaving.

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#8

I’m not sure how i got this disorder if decreasing methylation would help it. i’m a severe undermetylator that i take methionine for it

#9

I did happen olso to me!

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#10

CRISPR is already being trialled in humans at the moment. It’s efficacy in vitro has been demonstrated time and time again, as well as it’s safety, and I think it’s got a much better shot at rectifying what’s gone wrong rather than trying global demethylation agents. There are so many genes that depend on and regulate each other, and what do you suppose is going to happen by taking a drug that affects literally all of them? What do you suppose the odds of positive outcome are if you’re messing around with 1000s of genes? I’m not saying that there’s no chance it’ll work, just that the odds of it working seem extremely low.

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#11

Have u seen the clip i send u? He says CRISPR will never be used in clinical settings. He is very knowledgeable on the subject. Yes, in vitro it will, yes on embryos too. But it’s a whole different story to change the genes with CRISPR within a living adult human body so that it causes significant changes. There are way too many things that have to go precisely right to be able to do this. Check the video if u have time, he explains it very well. Also when it will eventually may be doable, it will not be used in clinical settings due to costs etc. CRISPR in itself is quite a hype.

And yes I agree the odds of global demethylation are low, but it’s still the only tool we have atm and also in the future years to treat this. Also, I suspect a few regulatory genes of being silenced, causing this chain reaction. My hope is that when these get unsilenced for a while, our body can revert back to normal, like normal people do when coming off SSRI/finasteride.

#12

When reading the article, I saw the same supplements being used for methylation treatment that many of us have seen some limited short term success with. These include b12, folate, cysteine, taurine, DHA, zinc, magnesium, etc.

I assume if we take a measured combination of them, as they may prescribe, and we frequently take all of the right tests to measure methylation, gut bacteria composition, hormone tests, and whatever else they look at, we may be able to keep them in balance, or at least identify what’s changing and put us on a path forward.

In all the months of reading about truvada/Prep, I haven’t seen a lab result that measures a positive hormone result, or anything else other than reported “improvements” and definitely not one that shows anything about methylation. I’d hope we can capture what specifically changes.

I think if methylation is a major contributing factor to our condition, we should be able to see/feel improvements when we reduce it either overall, or specifically to the “offending” gene, and to clinically identify that reduction.

In other comments, several others mentioned they felt better when taking antibiotics. If they had a full series of blood/urine/saliva/gut flora/semen, and even brain scan tests each day they were on antibiotics, do we think we’d see any changes from baseline? I would really hope we did, just like I do with this

I have my path going forward, and it’s to:

-take a series of (expensive) tests from this company to identify any possible known DNA virus, among other things:
https://aperiomics.com/

-Get DNA tested specifically for Methylation (expensive)

-Take another 23&me test (last one was also post pfs, several years ago) just for another baseline

-Get a full array of labs, bloodwork, saliva, cortisol, adrenal, hormone tests, etc…

-Get treatment/diet/supplements from a Doctor like the one listed in the article, who I’ve already reached out to (https://www.drkarafitzgerald.com/) or an equivalent doctor with a more science based approach

-Very regularly (daily/weekly) take the labs mentioned above to see what the effect of the treatments are

Two months of this could cost upwards of 15k, due to overpriced labs and doctors not accepting insurance, but after more than a decade coping with pfs, I’m running out of options.

If anyone has suggestions to include, or knows of less costly DNA labs, or other doctors in the NYC area, I’m all ears. If you think I’ll be wasting my money, I’d like to hear why too.

Thank you in advanced, comrades.

#13

I advice against taking things like B12, this is a methyl donor, increasing methylation levels. Dubya crashed on it, and another PSSD victim also did.

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#14

All those with stomach issues don’t take a proton pump inhibitor…

#15

You didnt understand anything, the gen was methylated on CNS not on blood stream… when you kiject anything its on blood stremam exogenous DHT is only 1 of multiple hormones created by 5ar2. You dont know what you are talking.

#16

SD5AR2 being methylated

Are we in a position to treat this and would it provide any benefit?

#17

I didn’t watch the entire video but I noted one or two of the problems that he was describing, which have since had fixes developed for them. It’s been the case with this technology in the two years i’ve been watching it, they find problems, then within the span of a few months they’ve found a workaround. I haven’t quite seen anything evolve like this, and I think you should look into it a bit deeper rather than taking someone at their word (including me), before you choose to make a judgement re what to do.

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#18

Several people have become significantly worse using things like vitamin B12 or zinc. In fact, some of the worst cases described on this forum are associated with supplementing Vitamin B. Read here:

What we know and can reasonably assume about our condition at this point in time points towards a reduction/silencing of the expression of androgen dependent genes through DNA methylation and driven by androgen receptor overexpression. We will hopefully know more once Baylor publishes. Unfortunately, none of this can be tested easily. The tests you are planning to do will very likely lead you nowhere.

This is an extremely complicated problem that needs to be investigated by the right people with the right specialized skill set and equipment. It won’t be solved or treated with the simple tests that we patients normally have access to through our doctors and commercial labs.

If you are willing and able to pay that much money for such tests, I kindly ask you to consider supporting the research efforts instead. With Baylor coming and our projects, new research avenues will come up that require funding.

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#19

I looked it up and u are right, my bad. Hope they will make some fast progress.

#20

If we agree and assume an underlying effect of finasteride resulted in over methylation of specific DNA, as mentioned in Melcangi’s research, I would assume actions to reduce it would result in some change, hopefully positive.

The link below lists some detail on over and under methylation, and a lot of it seems to make sense, except when compared to some results in this forum, as it relates to supplements.

My thoughts are in agreement that methylation is causing PFS, and reducing it should help us. I’m still wondering why some supplements that should help result in the opposite for some of us, and assume it’s because either dosage isn’t correct, or it’s not balanced.

I’m interested in everyone’s comment on the link below, and for what it’s worth, I previously took a lot of zinc, b12, etc, over the years, but have been so numb over the years, I didn’t feel an effect.

http://www.truevitality.com.au/articles/understanding-methylation-underover-methylation/