• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Positive Hydrogen Sulfide/High Homocysteine

Messages
44
Hey,

I recently got some results back which my doc (CFS empathetic) says suggests a folinic acid issue.

The tests I had done were:
Ammonia (blood) - normal
Methylmalonate Acid (blood) - normal
Homocysteine (blood) - 12.8 (normal is less than 9)

He says the homocysteine abnormality suggests a methylation issue, but the normal methylmalonate test suggests that b12 is OK - which means folinic acid is the problem.

If anyone has any thoughts on this in regards to the tests, their experience with folinic acid, knowledge on the issue, known quality folinic acid brands, etc... I'd appreciate your response.

UPDATE: A urine tests has come back.
Hydrogen Sulfide - Strongly Positive

Any thoughts/suggestions on this are also appreciated.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi.. yes your homocysteine indicate an issue. Mine was in the upper normal range, far less then yours and my specialist still picked right away from it that I probably had MTHFR polymorphism/mutation as he said thou in normal it was still too high so indicated an issue (I think mine was 8 something). He was correct as I then did test postive for MTHFR.

MTHFR is one of the worst polymorphism affecting many of us here. As, to be tested for it.. most labs can test for it, its part of a thrombophilia? panel I think it was. Make sure you find someone who knows how to treat this as not all who think they can, many still dont know what they are doing eg give people folate for it which is very wrong!

MTHFR is one of many of the methylation cycle issues. 23andME testing is another way to confirm this and would also tell you if you have other methylation issues which may be also interacting with your MTHFR mutation.
 

PeterPositive

Senior Member
Messages
1,426
Hi,
I have the same problem. High homocysteine and MTHFR mutations.

In presence of one or two MTHFR C677 mutations folic acid and folinic acid should be avoided and methy-folate should be used instead. This is the final product of the folate cycle and by taking it one can jump all the enzymatic steps and give the body what it needs.

A commonly used product is Solgar's Metafolin, which is found in almost every online supplement store.

B12 is also required alongside methyl-folate, possibly an active form such as methyl-cobalamin. You can find many posts about fixing methylation issues in this section of the forum. Take a look at the stickies in the first page.

cheers
 
Messages
44
Thanks both for your replies. I have seen many posts regarding methylation issues and gene mutations here and some great information. It appears as though I should do the 23andme testing to be sure of gene mutation.
My main reason for posting was skepticism of my docs recommendation of folinic acid compared with the alternatives (which he did not mention) like methylcobalamin, methylfolate, etc.... I was also wondering if I needed b12 sups given my levels were tested as fine.cheers.
 

PeterPositive

Senior Member
Messages
1,426
Thanks both for your replies. I have seen many posts regarding methylation issues and gene mutations here and some great information. It appears as though I should do the 23andme testing to be sure of gene mutation.
My main reason for posting was skepticism of my docs recommendation of folinic acid compared with the alternatives (which he did not mention) like methylcobalamin, methylfolate, etc.... I was also wondering if I needed b12 sups given my levels were tested as fine.cheers.
Well Methyl-B12 helps by donating methyl groups and running a process called methionine synthase, which is part of the methylation cycle.

In my case for example, my high homocysteine seems more dependent on B12 than folate. Raising my methyl-folate dosage hasn't helped very much while raising methyl-B12 has. This might depend on the other mutations I have with B12 metabolism (MTR, MTRR, TCN2)

So yes, the 23andme test can be helpful and it's reasonably priced.
 
Messages
44
OK another appointment with my doc has confirmed that mehtylfolate is indeed better than folinic acid, only he knew where he could get the latter and not the former, which is why he recommended it instead. Sigh...I also got Hydrogen Sulfide Urine tests back as 'strongly positive' suggesting it's a big issue for me. Anyone have tips here. I am going to do a bioscreen to check gut bacteria and 23andme for gene mutations which will make things more obvious. But in the meantime, what should I be eating/avoiding, supplementing etc...??