Well it has been a while since my last update. I’m on my Christmas break and I’m actually getting slightly bored without the stimulation from work, so I thought I would punch out a blog post.
The last blog post I created related to MTHFR and the supplements I was taking for it and everything seemed to be going well. Which it did for a while until I started going downhill again. I didn’t take me long to work out that the reason I started going downhill was due to cutting back on my Pyroluria supplements, particularly the zinc and B6. So added them back into the mix and I was up and running again.
This leads me to believe that I have Pyroluria with under methylation.
I’ve also changed over to a combined supplement for methylation issues called Methyl Guard Plus. I’ll update the supplements list that I take to include the Methyl Guard Plus and the Pyroluria supplements.
The fact that I under methylate I find quite interesting, if I only had the Pyroluria symptoms it would lead me to think that the issues I have are caused by a bug of some sort due to zinc and B6 being quite heavily involved in the immune system. Whereas, having a methylation issue does seem to point to a genetic related cause of my illness.
Generally speaking it seems my fatigue related symptoms relate to Pyroluria, while my brain fog and other mental symptoms relates to my methylation issues.
I still have to be careful to walk most days and I track my progress in relation to this with a FitBit. I also have to be careful about my diet, so I am still gluten free, dairy free, sugar free and pretty much follow a low FODMAP diet.
Another useful thing I have found lately is garlic oil capsules, they seem to help keep me ‘regular’. If you google it, they do list it as a natural way to relieve constipation.
Okay, it’s only been a few days since I last posted but still feeling rather, rather good. Will it last, that is the question. I am half expecting something to eventually deplete or get thrown off balance, we shall see though.
I have been to my the doctor and ordered a very broad gene test, I was given the option of just testing for MTHFR but from reading about the testing involved their can be multiple defective genes, so as the saying goes, in for a penny, in for a pound…I decided to go the whole hog. It’s a bit pricey but didn’t think it was too bad considering what they are actually doing…examining the DNA programming of your body.
I’m not going to talk about the doctor and the test lab much until I get my result. I haven’t actually been seeing any doctors very often as I didn’t think they really had any definitive answers for me. I was more interested in doing my own experimentation.
I am keen to blog about my lack of symptoms and how I go with ramping up my MTHFR supplements. I don’t need a medical test to tell me if I am feeling better or not, so this is what I will focus on.
Now that I am feeling better the first thing I want to do is drink some beers and eat lots of crap food ha ha…but no I’m being disciplined and not giving in to those urges, my diet is staying the same – for now. Watch this space though if I keep improving, their may be a beer or two involved in the future.
So main improvements I have seen so far:
- I no longer feel I am walking a tight rope of diet, supplements and exercise. I can have a more flexible life
- I no longer need to walk first thing in the morning to feel semi-alright for the day. I still plan on walking every day but it will be at different times of the day and I don’t believe taking a day off will matter
- My digestion is really improving, I no longer get blocked up and I just go easily and regularly
- I have more energy, particularly in the evenings, I’m no longer so tired at the end of the day
- Morning brain fog has almost ceased to exist and is getting better day by day as my body adjusts to the supplements
- I’ve reached ideal doses (as far as I know) of my MTHFR supplements, I’m no longer building up and I’m getting very minimal, if any, side effects from the supplements, whereas it was making me feel a bit strange for an hour or so after taking them in the early days.
I guess the main thing I am looking forward to is knowing what specific supplements to take and knowing those specific supplements are actually treating my underlying condition rather than symptoms or something that is close to my underlying condition….
Okay, I’ve almost completely changed my supplements around after Rosalinda commented on my blog (I know I’m fickle…)
hi harry i hope you are doing good. I communicated with you a few months back because your symptoms were very similar to mine and i was also taking most of the supplements you were taking. I was just wondering have you ever been tested for mthfr? I was and tested positive for heterozygous mthfr a1298c. I started taking thorne research methyl guard plus and i became a normal person again. My painful inflammation, fatigue, stomach issues etc. All went away and i can even drink alcohol and run around doing million things again.
I’m now mainly taking the following mthfr supplements:
- Methyl Folate
- Methyl B12
- P5P (Pyridoxal 5′-Phosphate)
- TMG (Trimethylglycine)
- Riboflavin (Riboflavin 5′-Phosphate Sodium)
and it is making a huge difference. Although I don’t want to get my hopes up too soon as I have had periods when I have been quite good…before my health declines again. This new regime is only 4 days old. The other thing is I’m not even taking large doses of the above nutrients and I’m noticing substantial improvements. The first couple of days of taking the new supplements I felt a bit weird and brain foggy for the first hour after taking them but after that I felt quite good. This initial reaction upon taking them has gone away for the past 2 days and I just feel good now that my body has adjusted or detoxed.
I’ve also booked a doctors appointment to see if I can get genetically tested for mthfr, as I haven’t been tested before (I’ve never even really heard of it before). It is interesting that mthfr also seems more mainstream and also easier to test for than Pyroluria.
I really like the sound of mthfr from what I have been reading, it would mean taking a lot less supplements compared to the Pyroluria supplements I have been taking, it also means I might be able to drink again (that would be so nice, just to be able to sit down with the normal people for a few cold ones), plus to be able to get some really good energy levels back. I reckon Pyroluria supplements get me to the 70 to 80 percent mark (which is better than the 20 percent energy level I felt I was operating on for a number of years ie mainly on willpower alone) but I really want the 100 percent.
Anyway a big shout out to Rosalinda for posting the comment, many thanks for taking the time.
I’ll post a bit more often to let everybody know how I am going, particularly when I get my test results back.
There is a lot of info about the condition at mthfr.net