Still hanging around, SLOWLY improving….slow as a snail trying to cross the road trying not to get crushed along the way. I know, I’m sounding frustrated, but those of you who are experiencing it yourselves understand. On the positive side I actually went hiking the other day on one of my favorite trails here, through a bamboo forest, picking fresh thimble berries along a stream, ending at a beautiful waterfall. This was about an hour hike…not real strenuous, but I did it. I actually had windows of time that I felt normal again. I’m so thankful for these days…they keep me going.
I’ve been told by some that it can take a full 2 years to recover from chronic Epstein Barr Syndrome, adrenal fatigue and/or chronic fatigue syndrome. I know my body wants to heal and it’s capable of healing….it’s just so hard to stay positive sometimes. I’ve been taking qigong and meditation classes that are great and I know are helpful in one way or another. There was a doctor in my meditation class that talked to me after class. He said, “You know there isn’t any amount of meditation that’s going to help you. He basically said there really isn’t anything out there that he knows of that has helped people with my problems…then he paused and said except for Tibetan medicine and he named a medicine they use that has helped people. I thought it sounded like another thing that I’ll spend money on that doesn’t work…then again, in the back of my mind I think I might ask him again for the name and do some research.
So, what I’m doing right now is b-12 oils. I was noticing that when I took my sublingual methyl cobalamin B-12 in the morning I often felt worse and it seemed weird to me…..so I got on-line to see if other people had a similar problem and yes there are others with the same reactions, probably due to genetic mutations. One lady referred to this site B12 Oils. She said it wasn’t a great site, but if you have questions there is a guy, Greg, who is a biochemist, that is incredibly helpful and wow, was she right.
He asked me for my genetic data from 23 and me and went even a step further than the other biochemist I have helping me. He did all this free of charge, by the way. This is what he told me, “Just looking at the SNPs with double mutations, the FUT which is slightly over-expressed in CFS, and may explain some susceptibility to infection. GAD, the enzyme is involved in making GABA, so reduced activity will mean that there is less GABA and so lower ability to dampen down over excited neurons. BHMT will reduce your ability to use betaine (from choline or phosphorylcholine) for a source of methyl groups. It has been stated that up to 40% of your SAM synthesis comes via this route If this is the case you will be “stressed” to make methyl groups. PEMT means that it is hard to convert phosphatidylethanlamine to phosphatidylcholine. This may mean that you would do well on lecithin, or eggs. SOD is not very well explained, but it is supposed to be active in reducing oxidative stress. This will be reduced. MTHFR and MTRR and MAO all need riboflavin (or at least FAD) as does NOS, so if you are deficient in B2 your enzymes will work much, much lower. If your metabolism shows signs of riboflavin deficiency you will also have a compromised immune system and multiple food sensitivities to histamines and tyramine in food. Prolonged B2 deficiency eventually leads to B12 deficiency in otherwise normal individuals.” WHEWWW! I’ll be getting retested on my thyroid and other basic tests in a week so I’m hoping to include one for riboflavin. In the meantime Greg also suggested, if I can afford it, a lab called OAT (organic acids test) He said this test is very helpful in pinpointing further where I’m having problems. I checked with my insurance and it looks like it might be covered but I have to get my doctor to send the reasons why I need it to Blue Cross. He agreed, so I’m hoping to get this done in the next month or two. Here’s the site for the lab that does this as well as many other helpful tests, for anything from ADHD, autism and autoimmune chronic diseases, Great Plains Lab.
From Tony Robbins book, Money, Master the Game, “We all get what we tolerate so stop tolerating excuses within yourself, limiting beliefs of the past, or half-assed or fearful states. Use your body as a tool to snap yourself into a place of sheer will, determination and commitment.”