Hey all,
I have had CFS from the age of 8 (now 30). I have thought all the crap to be normal but as it turns out, nothing is normal and in hindsight, ive had a pretty crappy and boring life.
My symptoms spectrum includes neurological, fatigue, fibromyalgia (tender points, muscle pain, back pain, extreme heat sensitivity etc), depression/anhedonia (actually have most of the common symptoms associated with ser,dopa,ep/norep deficiency) and the one I HATE THE MOST...extreme social phobia! My life has been descimated by the social phobia more than any other symptom!!!
I have had a few tests done and it turns out I do have a problem with the methylation cycle and glutathione depeltion and folate dysfunction.
Here is a very brief summary of my test results:
Nutritional Profile:
- Essential amino acids are all within range, which is a good start!
- glycine, serine low. alanine sarcosine, ethanolamine, proline high
- Arginine high, aspartic acid low
- High homocysteine
Low potassium
- Pyruvate elevated, lactate normal. Krebs VERY slow! All markers are either low or "DL" (below detection limit).
- Dysbiosis markers are normal, no yeast etc.
- Most Omega 6 are borderline high and nonadecanoic is through the roof!
Heavy metals:
- Three day DMSA chelation test revealed no heavy metal overload...another good result! (apparently, a one-off DMSA provocation is not accurate as it just "picks up the low lying fruit" as my nutritional MD put it)
Methylation:
Genetics: MTHFR C677T +/-, MTR +/-, MTRR +/- (several of the MTRR are hetero), CBS A360A +/-, MAO A +/+.
Methylation cycle:
- low GSH:GSSG (3.3:0.53) confirmed glutathione depletion
- low SAM:SAH (216:52.6) confirmed SAMe imbalance
- low 5MTHF (7.9), low THF (0.5), Low folic acid (324) confirmed folate dysfunction
- Elevated adenosine (don't know what this means, I assume it is a marker for the rate of SAH to HCY conversion, where the adenosine is removed, leaving HCY).
I have attached the table of results for this test, as it is probably the #1 most appropriate test for the methylation/GSH/folate hypothesis behind CFS.
I have tried lots of different treatment protocols over the last few years and have not had much of anything happen.
I find I am the opposite to supplement hyper-sensitive, I just have nothing happen! It's so frustrating that no matter what I do, I just have nothing happen!
A week ago I started the Freddd version of the protocol (Rich's (RIP my friend) version with low dose methylfolate and PerqueB12/hydroxyB12 didn't do anything).
I am taking:
- 5mg Quatrefolic methylfolate every morning before breakfast (I just split the 10mg capsule into two caps)
- 2.5mg adB12 sublingual before breakfast
- 2.5mg mB12 sublingual in the evening
- Fulvic minerals morning and night
- B-complex with breakfast (Country Life. The one with the mix of inactive and coenzyme forms. I don't think I have a hypersensitivity to the folic acid in it)
- 1200mg slow release Potassium, will increase to 1800mg as of tomorrow
- Milk thistle with dinner
- Selenium with dinner
The plan going forward:
I will be adding 1/4 tablet of lithium to this mix tomorrow and then a week later, i'll double the mB12 and adB12. I'm hoping that while the methylfolate is working on the BH4 increase and therefore, better neurotransmitter production, the mB12 will improve methylation and the adB12 will drive nonadecanoic and some amino's into the Krebs cycle, which truly needs a boost!!!
My plan is to basically keep increasing on a weekly basis until I feel a change. I don't care what it is as long as I feel something!!! After next weeks increase, i'll increase mB12 in 5mg increments and the adoB12 in 2.5mg increments. I'm not sure whether I should try the full 10mg methylfolate but then again, I would really love the benefits of a proper functioning monoamine neurotransmitter system.
Any input, thoughts, technical analyses etc are welcome and encouraged. One thing ive come to learn about our stupid illness is that we have to help each other out!!
Cheers,
Neil
I have had CFS from the age of 8 (now 30). I have thought all the crap to be normal but as it turns out, nothing is normal and in hindsight, ive had a pretty crappy and boring life.
My symptoms spectrum includes neurological, fatigue, fibromyalgia (tender points, muscle pain, back pain, extreme heat sensitivity etc), depression/anhedonia (actually have most of the common symptoms associated with ser,dopa,ep/norep deficiency) and the one I HATE THE MOST...extreme social phobia! My life has been descimated by the social phobia more than any other symptom!!!
I have had a few tests done and it turns out I do have a problem with the methylation cycle and glutathione depeltion and folate dysfunction.
Here is a very brief summary of my test results:
Nutritional Profile:
- Essential amino acids are all within range, which is a good start!
- glycine, serine low. alanine sarcosine, ethanolamine, proline high
- Arginine high, aspartic acid low
- High homocysteine
Low potassium
- Pyruvate elevated, lactate normal. Krebs VERY slow! All markers are either low or "DL" (below detection limit).
- Dysbiosis markers are normal, no yeast etc.
- Most Omega 6 are borderline high and nonadecanoic is through the roof!
Heavy metals:
- Three day DMSA chelation test revealed no heavy metal overload...another good result! (apparently, a one-off DMSA provocation is not accurate as it just "picks up the low lying fruit" as my nutritional MD put it)
Methylation:
Genetics: MTHFR C677T +/-, MTR +/-, MTRR +/- (several of the MTRR are hetero), CBS A360A +/-, MAO A +/+.
Methylation cycle:
- low GSH:GSSG (3.3:0.53) confirmed glutathione depletion
- low SAM:SAH (216:52.6) confirmed SAMe imbalance
- low 5MTHF (7.9), low THF (0.5), Low folic acid (324) confirmed folate dysfunction
- Elevated adenosine (don't know what this means, I assume it is a marker for the rate of SAH to HCY conversion, where the adenosine is removed, leaving HCY).
I have attached the table of results for this test, as it is probably the #1 most appropriate test for the methylation/GSH/folate hypothesis behind CFS.
I have tried lots of different treatment protocols over the last few years and have not had much of anything happen.
I find I am the opposite to supplement hyper-sensitive, I just have nothing happen! It's so frustrating that no matter what I do, I just have nothing happen!
A week ago I started the Freddd version of the protocol (Rich's (RIP my friend) version with low dose methylfolate and PerqueB12/hydroxyB12 didn't do anything).
I am taking:
- 5mg Quatrefolic methylfolate every morning before breakfast (I just split the 10mg capsule into two caps)
- 2.5mg adB12 sublingual before breakfast
- 2.5mg mB12 sublingual in the evening
- Fulvic minerals morning and night
- B-complex with breakfast (Country Life. The one with the mix of inactive and coenzyme forms. I don't think I have a hypersensitivity to the folic acid in it)
- 1200mg slow release Potassium, will increase to 1800mg as of tomorrow
- Milk thistle with dinner
- Selenium with dinner
The plan going forward:
I will be adding 1/4 tablet of lithium to this mix tomorrow and then a week later, i'll double the mB12 and adB12. I'm hoping that while the methylfolate is working on the BH4 increase and therefore, better neurotransmitter production, the mB12 will improve methylation and the adB12 will drive nonadecanoic and some amino's into the Krebs cycle, which truly needs a boost!!!
My plan is to basically keep increasing on a weekly basis until I feel a change. I don't care what it is as long as I feel something!!! After next weeks increase, i'll increase mB12 in 5mg increments and the adoB12 in 2.5mg increments. I'm not sure whether I should try the full 10mg methylfolate but then again, I would really love the benefits of a proper functioning monoamine neurotransmitter system.
Any input, thoughts, technical analyses etc are welcome and encouraged. One thing ive come to learn about our stupid illness is that we have to help each other out!!
Cheers,
Neil