Hyperhomocysteinemia, the unknown health issue.

[thierry]

First, thank you guys for the support this past year. 
Unfortunately, my health has worsened even more. 
Writing this post is difficult for me as I’m now dealing with neurological damages, dementia and probably intellectual deficiency but I will take my time.

I now know what was the issue with my health during all this years: https://en.m.wikipedia.org/wiki/Hyperhomocysteinemia

doctors in France are completely unaware of this illness. I have been gaslighted with doctors my all life. Went into psych ward.. have been given meds that worsened my condition..

my homocysteine level is 31. Ideally it should be 7.

this is caused by a rare gene mutation. 
 

I searched for doctors since I am 15. I am 28 now. When I was 19 a doctor found that and told me it was not a big deal. He gave me vitamine B I felt so much better as it made my homocysteine lvl at 12. 
 

Then I stoped taking my vitamine cause the doc did not give me any warning and I thought it was fixed and especially not very important. 

How foolish I am you might be thinking. Well I agree but from my pov you have to understand I was searching for my health issues every where and had been wrong many times.. so I was not sure of anything. 
 

anyway after I lost myself again and ended up in psych ward I even forgot about this homocysteine story and my health kept degrading since. 
 

I feel the need to put that out there. You should all check your homocysteine lvl. Above 10 is already too much and it will damage your body. I let you do your research.

I will not detail all I suffer from now but I’m in a Hellish place waiting for death to come. Please do not try to show empathy or to motivate me with life. I’m not depressed, I do not need it. I’m just realistic.

Now I need to express myself as if I’m talking to a psy(it won’t be that interesting):

I do not understand why I had to imagine such a Hellish dream as this life.

You might say, hey take your responsibility, be responsible for your shits. Okay and yes I recently saw Leo’s video on responsibility. And I tried to tell myself that’s my fait but really. I suffered since I was a kid. I started searching for doctors to help me and have been gaslight by them since 14-15yo I also had to graduate and live and try to socialize while I constantly was being poisoned by my own body. My parents always told me I was making things up and that they trusted more the doctors than me. They always called me lazy while in my reality I was fighting and struggling like the most courageous soul on the universe just to try to survive. I thought about my responsibility and honestly I tried my best. Of course I have regrets but my case was so complicated, I just can’t say it was all my responsibility. Maybe I could have found a way but it is not the case. 
the only lesson I retain from this life is that sometimes God incarnates in Hell and that’s it. This Idea that « if you give your best you can’t possibly fail » is bs sometimes you give the best you walk like a beast through hell only to end up in hell. Now my body is completely dysfunctional. I can not sleep wake up in horror panick full insanity where my own concisousnees feels like burning flames with no ground. The « with no ground » is the really terrifying part cause I do not even know where I am. Just pure conciousness suffering and I feel so insane I do not even know who I am and where I am at and as I do not even Feel as this body so it feels like I have 0 control on it and it can go anywhere. Some say no ego no suffering, that is such bs. I can tell you guys for a fact that I wake up with no ego and enormous suffering, I do not even have memory of who I am, that’s how fucked up my brain is. 
Anyway thanks for reading.

(Also yes I should have never done psychedelics, knowing what I know now but the neuro regeneration research made me try it..)

[thierry]

Also the worst part of it is that I have a very loving family that I love and they all suffer with me and do not want to see me death. That’s how stuck I am.

[thierry]

Also my parents still denies my illness saying I’m making things up, it is in my head and I should take my psych med which are just even worsening me. They will only recognize it when I will have full proven dementia. Eventhough I took my tension this morning it was at 8 my mother told me it is because you do not do anything, move yourself.

[integral]

Why is the situation not resolving itself after supplementation? Are you improving or getting worse?

https://www.reddit.com/r/MTHFR/comments/121fpwo/homocysteine_was_30_norm_is_010_what_should_i_do/

look at strategies other people are doing there is some interesting information 

Edited July 14 by integral

[thierry]

8 minutes ago, integral said:

Why is the situation not resolving itself after supplementation? Are you improving or getting worse?

Initially it was even worse cause it liberated all the accumulated toxines. I vomited every night in horror panick.
now I can feel a little more clarity of mind. 
one week ago I really felt I had 40IQ 

I could not even listen to someone, I had to focus and take the time to integrate what was said. you guys should appreciate the genius there is just in listening reactively to someone talking to you. 
So I’m improving there but I have a lot of other issues which I think are not reversible. Lots of cellules degenerated. I can’t feel my hands the same way I used to. 

[integral]

23 minutes ago, thierry said:

Initially it was even worse cause it liberated all the accumulated toxines. I vomited every night in horror panick.
now I can feel a little more clarity of mind. 
one week ago I really felt I had 40IQ 

I can relate to this, as long as you’re improving you’re going to bounce back and it’s not brain damage related to what you think right now you’re probably experiencing major brain fog.

numbing will come back as well but right now your situation is when one part of the body fails many parts fail, so it’s not just one problem anymore. you might noticed that masturbation or ejaculation causes fatigue and things like that, partially because your body can’t lose those nutrients. If you have POS then it takes up to four days of abstinence to get the feeling in your fingers back.

As long as you continuously make improvement you’re gonna be able reclaim a decent liveable quality of life.

Relating to doctors not helping you correctly and not knowing anything and your parents and people denying everything you’re experiencing, it’s very common and I know it’s frustrating but there’s nothing really they can be done, focus on helping yourself.

Edited July 14 by integral

[integral]

“

30 is high for homocysteine. High homocysteine is caused by folate deficiency and/or b12 deficiency, so you should take both. It causes a lot of problems, including depression, so lowering it should be your main priority. Taking riboflavin is also supportive. TMG helps lower existing homocysteine levels, and should be included in your supplement stack.

B vitamins start to work after 6 weeks, and your body can takeup to 6 months to fully heal, so be patient, although you can sometimes feels effects sooner.

Not all supplements are equal. Does your supplement have folic acid and cyanocobalamin? Look for a supplement with Lmethylfolate and methylcobalamin. It's more bioavailable and if you have mthfr folic acid and cyanocobalamin often cause anxiety. I recommend Thorne's methylguard or Methyl-Life's Multivitamin

Go slow with increasing methylfolate. If you have mthfr your body has been working with limited folate and decreased methylation for years, and they theorize that detoxification can occur when you start supplementing. If you have trouble with methylfolate, start with high dose b12 and a very small amount of folate. If that doesn't help look into hydroxycobalamin and folinate.

It's a good idea to avoid all folic acid once you start supplementing, as that can increase the anxiety and sometimes causes absorption issues with the L-methylfolate.

Drink electrolytes after supplementing. It helps a lot with the aches and fatigue.

High B6 supplements can lead to toxicity. Avoid any supplement with pyridoxine, and look for doses around 30mg or lower of p5p instead.

Ben Lynch's site, mthfr.net is good for additional info, as are NIH studies on treating depression with folate, which you can find with an internet search.

Deplin îs a high dose methylfolate supplement that helps support anti-depressants and is worth looking into once you can slowly level up your folate dose. Methyl-life also makes an over-the-counter high dose methylfolate that some people find useful for depression.

I've experienced fatigue, depression, anxiety, and that 'everything is scary' feeling. I have an mthfr mutation and have spent years doing reading trying to treat myself since most doctor's don't have a lot of advice. I'm doing a lot better now, and that's mostly due to following the protocol I've outlined above. Good luck.”

—-
The above is someone who has direct experience with a similar issue and went through years of resolving it. You want to look for people who have high success fixing an issue and personal experience with a particular issue and see what their journey was it’s going to be worth 10 times anything that A doctor is going to tell you.

Edited July 14 by integral

[Michael569]

11 hours ago, integral said:

30 is high for homocysteine. High homocysteine is caused by folate deficiency and/or b12 deficiency, so you should take both. It causes a lot of problems, including depression, so lowering it should be your main priority. Taking riboflavin is also supportive. TMG helps lower existing homocysteine levels, and should be included in your supplement stack.

impressive! not everyone is familiar with this complex pathway

@thierry maybe you could find a nutritionist locally or a functional medicine doctor who could run something like a methylation panel for you. This is by Genova Diagnostics Methylation panel  basically testing all the cofactors 

 

[thierry]

@integral Thanks a lot for all this. This is really appreciated.

@Michael569 thanks yes I already did some research on this. Basically I just had to supplement myself with vitamin B6 B9 B12 and betain. That’s so dumb to think I reached this unhealthy whole that could have been avoided so easily..

[Michael569]

27 minutes ago, thierry said:

Basically I just had to supplement myself with vitamin B6 B9 B12 and betain.

Important that the B vitamins are methylated as mentioned by Integral.

Homocysteine could be increased due to other things than methylation cycle disruption as well so keep an eye on it. It may take some time (few months) for it to start coming down so be patient and work with someone who will help you explore this from a more holistic perspective, in case you don't see any results from supplementation. 

Something like this (link) is what I mean. It needs to say 

• B9 as - 5-methyl-tetra-hydro-folate 
• B12 as methyl-cobalamin 
• B6 as P5P
• Betaine doesn't matter 

If it also contains a bit of Choline that might be a bonus

None of this is a direct supplemental recommendation so work with someone who specialises in functional nutrition locally in France 

Edited July 15 by Michael569

[integral]

https://aor.ca/product/advanced-b-complex/
this supplement meets all the requirements I believe that they are in the correct form. And it has that choline bonus. But maybe it’s best to buy each vitamin individually

Edited July 15 by integral

[thierry]

@Michael569 @integral 

guys thanks again.. I have all the vitamins methylated. 
I can feel my body is no more degrading and poisoning itself eventhough it reached a very damaged point which makes me depressed. I’ll check my homocysteine level tomorrow but I’m pretty sure it is now safe. 

crazy how you guys help me more than 12 years of doctors when I was actually paying for these doctors to tell me basically that it was all in my head.

Anyway sorry but I mean I certainly now have mental issues eventhough the root cause was not psychiatric and anger problems towards traditional medicine. 
 

All I want to highlight is the importance of contemplating and taking responsibility for your health daily, do blood check up as much as you can. As they say it is better to prevent than to try to repair a broken car and a lot of health accident can in reality be so easily avoided. 

[integral]

20 hours ago, thierry said:

crazy how you guys help me more than 12 years of doctors when I was actually paying for these doctors to tell me basically that it was all in my head.

I know man it's painful I went through the same thing. In the end you had to be ambitiously focused on your health to really figure this out many years ago when it first began by Brute Force of persistence and going to every single doctor you could possibly find until you stumbled upon the right answer. Basically something very few people even realize that they need to do or have the money to do. It's completely unreasonable.

20 hours ago, thierry said:

I can feel my body is no more degrading and poisoning itself eventhough it reached a very damaged point which makes me depressed. I’ll check my homocysteine level tomorrow but I’m pretty sure it is now safe. 

You're going to slowly recover over the next 6 months to 3 years because you're still young and the body is actually really good at recovery you just have to give it all the tools it needs to do so. You're going to recover to a high enough quality of life where you're content, but it's just not going to be perfect.  So pay attention to the long road and do everything you can to slowly make progress, really nail down your sleep routine and everything to maximize recovery make sure you're eating well, notice how food affects you now because your body is different and it doesn't work the same way it did before.

[Michael569]

@thierry glad you feel better.

Still, do keep an eye on those homocysteine levels and check at least every 3 months.