Can someone more experienced help me figure out where to start?

[Lilmaz]

Hi there,

I'm new to the forums but not ME/CFS (since 2001). A year ago I did the 23andMe test for my son and I. I am having a hard time finding a practitioner to help me in New Zealand this science is still so new. I have been quite ill again since surgery under GA in 2012. This is what made me think there was a strong chemical/metabolic component to my issues.

I've read the b12 protocols pinned here, however I did very poorly with Seeking Health's multi and methylb12/methyl folate. Once I got my SNPs I realised it was a lot more complicated than that.

I'd so appreciate some input into where to safely start. I can post my main polymorphisms relevant here if that helps.

I have ME/CFS, PCOS, MCS, histamine intolerance, leaky gut & food intolerances, sensitivity to sulphur & I think excess ammonia, insomnia and a stubborn chronic parasitic infection.

I think maybe I need to start with P5P and hydroxyb12 but unsure...

Tia

 

[Misfit Toy]

Welcome. I have also been sick since I had surgery this past January...was also under. Go to Caledonia's blog. She has on her signature a blog of where to begin. @caledonia . Also, @Valentijn also may be able to help you. I can't address it yet because my brain is too foggy to even know where to begin. Best of luck!

 

[Lilmaz]

Thank you - caledonia's files won't open on my phone for some reason so I'll have a try later on a pc.

I understand there is a connection between NO gas and disrupting the methylation cycle but I used gas during labour and was no where near as ill after that as I was after surgery under GA so I believe there is more to it. Perhaps liver issues as well (no doubt related to methylation, seems like everything eventually leads back to that!).

 

[caledonia]

Hi Lilmaz, there are different kinds of anesthetics.

Some are very bad for those with MTHFR (and ME patients), some are better. It could be that a different type of gas was used during labor, or you had more glutathione back then to detoxify it. Or the first gas could have depleted a bunch of glutathione which was never fully replaced (due to methylation issues), setting you up for a worse time the next time.

At any rate, if you ever need to do GA again, do a google search on "CFS and anesthesia" for a guideline. Give that to the anesthesiologist prior to surgery.

As far as your methylation treatment, the first place to start is with the gut, which would be the 4R Gut Rebuilding Program.

 

[Lilmaz]

Thank you yes I have been doing GAPS intro but I keep getting to a roadblock in improvement and I wondered if it was related to poor methylation as I recall reading something about sulphur and leaky gut and also that some people saw an improvement in their gut when sorting out their methylation.

Today I am going for food intolerance testing so I can make sure I am eliminating the offenders while my gut tries to heal.

My SNPs show
Hetero for 2x COMT, 2x CBS, BHMT-08, VDR Bsm & Taq and MTHFR A1298C.
Homo for MOA-A, MTR A2756G and MTRR K350A.

I've been trying to address the excessive histamine through my gut but I now see that BH4 has a bearing on histamine metabolism and I wondered if supporting this would help me heal as a lot of my histamine reactions are in my gut which causes more inflammation.

My predominant symptom after surgery was horrendous brain fog and vertigo that went on for months. At the time I was taking NAC which I ignorantly thought would help me but I now wonder was creating a vacuum of co-factors and making me very ill. I couldn't drive, walk or even sit at times (only managed and felt on the verge of a seizure much of the time it was very frightening.

The gas during labour was a year later however my lifestyle had improved a lot and supplements changed being pregnant so perhaps I was better able to handle it. It was very little anyway as my labour was very fast but thank you, hopefully I won't need another General but I will be sure to discuss my options next time. I think because going into that surgery I was what I considered 80% well my ME wasn't at the forefront of my mind.