Progress is getting there. Rich can you pitch in on this?

[Gavman]

Rich, I was wondering if you wouldn't mind giving me some input in whats going on with me. I know you have your head around this stuff much better than I do.
If you can see any patterns or avenues for more checking for me, i'd much appreciate it.

Vital precursors to CFS
Roaccutane for 6 months+, this dried me out and started giving me sensitivities. Big doses of vitamin a.
GF got kissed by a stripper on a cruise, i kissed her then got progressively worse when most colds/flus dont hit me. Then had wisdom teeth taking out soon after.
Shock/Freeze moment where my mouth went dry and i couldnt say or process anything - with then Gf when she wanted to break up with me.
Saw neck cracking chiropractors for a few months. BAD BAD BAD.

I have come off Effexor completely after 4 months on these supplements. And feel really good.

Supplements I benefit from:

SAM-e: As soon as i started taking i had massive energy fix, which has lasted - 400mgs a day or 1 tab each of TMG 500mgs & l-methionine 500mgs.
Zinc: Solgar zinc complex 15 mg zinc, molybdenum and manganese twice a day. This complex just feels so good for me. Improves my warmth/skin color.
P5P/B6 - 50mgs twice a day. I can feel quite heady with this, therefore i've been occasionally been putting the B2 100mgs in every couple of days. My dream recall and visualising behind closed eyes has improved 40% from these.
Evening Primrose Oil 1000 mgs/day - Tried plenty of other fish oils with no long term benefits, this is making me feel hydrated.
Potassium/Magnesium - potassium phosphate dibasic 33mgs /magnesium phosphate 65mgs - Magnesium on its on seemed to give no lasting help. This together has been amazing for feeling better. It seems like i only benefit from small doses every now and then though.

Supplements i have had troubles with:

B12/Folic Acid (tried 3 different types of b12 you and freddd suggested and 2 methylfolates) - these on their own or together. While taking this 6 months ago, after two months i started feeling more dehydrated, getting alot of cold sores and mouth aches.
B-Right - Felt good for a few days then it started making me feel sick.

Current improvements from supplementation:
Energy is about a 8-9/10. (may settle lower after a month off effexor), mood is now 8/10. - six months ago energy was a 4, mood was a 5.
Limited PEM crashes instead of all the time.

Improvements to go:
Less muscle pain/exhaustion/fatigue and more muscle endurance/strength. -- might manganese be indicated here? My muscle energy would be at about a 3/10.
Sex issues.

Main Food Cravings:

Chocolate
Calcium - Yoghurts, icecream, milkshakes.

Food sensitivities:

Fructose
Corn
Parsley
MSG
Vanillin flavoring
Goats milk
Rye

Tense body areas:
Right side of body is alot more stressed/problematic/disocciated.
Top few vertebrae of neck are collapsed.
Base of neck pain.
Tension stuck right behind the heart point.
Kidney/liver area tension.
Calves tight.
Numbness/tingling to pinkies on hands.
Muscle strength/endurance sucks

Past Important Notes
Mother had bipolar and was depressed majority of my life, classic helicopter mother.
Had cellulitis when i was 7, if i hadnt moved hospitals i would have probably died.
Bones are very strong, muscles have always been overly tight/tense.
School/life was too fast and i never felt like i had enough time to process.

Thanks for reading this. If anyone else wants to comment, please feel free.

 

[roxie60]

thanks for sharing Gavman, glad to hear you are having some good results on your protocol, if you are at 8-10 sustained I think that is great! How long did it take for you to figure out whatworked best for you?

 

[Gavman]

Had this for 6 years. Hit on Rich's protocol maybe 8 months ago. 6 months i tried B12/folic acid.
4 months on SAM-e and b6/zinc. Dropped effexor 150mgs to 75mgs 3 months ago.
Dropped from 75mgs to 0 a week and a half ago.

 

[place]

Wow! Well done with the energy!!!!

I too even though I have only been on the B's for a month, are having some serious energy days (not every day), Like I am spastic. I was dx with ADHD/ADD when I was 8, and now that's what I feel like!

I do also notice that my muscle fatigue is really bad. I have energy but I fell like I have run a marathon just going up a flight of steps. I have not put any mang in my mix but have added it.

I think I might drop my AD slowly, I woke up this morning in a near giggling mood. so weird!

Hopefully someone will have some answers!!!

 

[place]

Just wanted to post that I think my muscle fatigue is getting worse over the last 3 weeks. I have to stop and rest at the top of my stairs, if I make it up without stopping.

Prior to Methly I could run a mile without stopping =( I have to be missing something????

 

[hixxy]

Cravings aren't necessarily an indicator of what your body needs. Especially in the case of dairy. Your cravings are more often then not your worst enemies.

 

[roxie60]

Sadly I have been on Mentanx and Methyl B12 and still not great energy. I am better than I was 6 weeks ago but that is how my flares go, really bad then eventually back to some level of functioning. Still longing for the day I can have energy that lasts ..... heck I'll take just a few hrs a day of good energy nd strength....was really hoping the new Menatnx and B12 sublingual was going to be the magic bullet. Obviously still missing something..

 

[nanonug]

Just wanted to post that I think my muscle fatigue is getting worse over the last 3 weeks. I have to stop and rest at the top of my stairs, if I make it up without stopping.

Are you taking potassium and magnesium?

 

[Gavman]

Good call Hixxy, i've been processing that thought this morning.
Perspective changes are healthy - I wonder if people who are visually impaired tend to find it harder to change the way they look at things. And whether, if someone was B2 deficient, it could have a flowon effect on their psychology if they upped it.

 

[hixxy]

Good call Hixxy, i've been processing that thought this morning.
Perspective changes are healthy - I wonder if people who are visually impaired tend to find it harder to change the way they look at things. And whether, if someone was B2 deficient, it could have a flowon effect on their psychology if they upped it.

Hah, I think you're just over analysing now ! :Sign giggle:

I just replied to your post on the Aus Myhill forum.

I will say I have strong dairy and chocolate cravings too and I just ate some chocolate. I pay for both of them every time!

 

[place]

Hey Nano,
I ordered some a few days ago, I have never benifited from Mag, but will keep you posted on the progress.

 

[Gavman]

I'm analysing, -over- is not really an effective adverb for analysing. Time would probably be more of a factor. lololol.

Actually for me this is normal, I generally start with a psychological mindset, amazing how i've worked on peoples bodies and something psychological has shifted. Or you can work on someone psychological and body pain can diminish. I say its all interelated.

Amino Acid Plasma test is coming in the mail. should be fun!

 

[hixxy]

I'm analysing, -over- is not really an effective adverb for analysing. Time would probably be more of a factor. lololol.

Actually for me this is normal, I generally start with a psychological mindset, amazing how i've worked on peoples bodies and something psychological has shifted. Or you can work on someone psychological and body pain can diminish. I say its all interelated.

Amino Acid Plasma test is coming in the mail. should be fun!

Where'd you order your Amino acid plasma test from?

 

[place]

I did a test run.... literally. I took two mag pills and two potassium and it was not good. I could not finish my normal run.

I use a Heart Rate monitor to gage my effort. All was the same with HR but I could not breath, I felt sick and totally drained.

However, while walking home, I noticed that I had the panic feeling in my chest if my Potassium is low.

So I took 300 potassium and all is better. So I wonder if the feeling of energy from muscles is also an indicator of low Potassium... hum...

I am going to try another test run on Friday with the following changes:

2 mag

400 potassium


Keep you posted...

 

[nanonug]

I took two mag pills and two potassium and it was not good. I could not finish my normal run.

Place, what were the actual amounts? Magnesium will make you very sleepy if you take a ton of it (and it will give you diarrhea too.) You probably want to take magnesium at night to rebuild your magnesium muscle stores. As for potassium, it is better if you find an extended-release version. In the US, I think this can only be obtained by prescription, as Klor-Con and friends.

 

[place]

Thanks Nano again for the good advice!

My mag is citrate 200mg. I did not realize it need to store it up! I will add it to my night routine, I had taken 200mg of potassium. But will look for one that is extended release type.

Thank you, Thank you, Thank you!!!

 

[Gavman]

I haven't seen, heard, felt, anyones PEM get fixed through potassium/magnesium. I think it can assist but something is going deeper than that. My calcium levels are kickass, people hit me and hurt themselves on my bones. Its the muscle tightness that sucks, which potassium/magnesium has not corrected on its own. Collagen has helped somewhat with that but i think its more of a slow buildup.

Hixxy - nutripath.com.au - it does annoy me that nowhere lists their prices anymore. Guess those comparison websites got out of hand. But Amino Acid Plasma is $100.

 

[richvank]

Hi, Gavman.

I'm glad to hear about your improvements!

I'll offer some thoughts for what they are worth. I'm pretty much shooting in the dark, though, without some lab test results to guide my thinking.

You mentioned Roaccutane. I've probably heard from four PWMEs now who had this in their history. In the U.S., it's just called Accutane. I don't know if this is relevant to your case, but it is known that one of the effects of Roaccutane (also called isotretinoin or 13cis-retinoic acid) is to raise the expression of the gene that codes for glycine N-methyltransferase. This enzyme is the "safety valve" that normally prevents the SAMe to SAH ratio from going too high, and it works by taking methyl groups from SAMe and putting them on glycine to form sarcosine. The sarcosine then gives the methyl groups to tetrahydrofolate to form 5,10 methylene tetrahydrofolate, which can then be used to make thymidine for DNA production, or can be used to make methylfolate to drive the methionine synthase reaction.

When Roaccutane raises the activity of glycine N-methyl transferase, the result is that the ratio of SAMe to SAH goes too low, and the person's methylation capacity drops. This affects a large number of reactions in the cells that require methyl groups, and in particular, it affects the methylation of DNA. Methylation in general silences the expression of genes, so if the methylation capacity drops, I think we should expect higher gene expression to occur, which could cause many changes in the biochemistry as more copies of various enzymes and other proteins would be made.

In most people, when treatment with Roaccutane is stopped, the methylation apparently returns to normal. However, I suspect that in some cases, the methylation gets "stuck" in a positive feedback loop, i.e. a vicious circle mechanism, so that the expression of the glycine N-methyl transferase stays high, and the lowered methylation capacity prevents methylation and silencing of the gene expression for this enzyme.

Since methylfolate has the additional property that it downregulates glycine N-methyl transferase at the biochemical level, treatment with high dose methylfolate may be able to break this vicious circle. So far, this is just a hypothesis.

You mentioned that you have responded well to supplementing SAMe. I think that suggests that you do have a methylation deficit, and perhaps it started with the Roaccutane treatment. However, I understand that you did not respond well to methylfolate treatment or B12 treatment or the combination, and I don't know what to make of that. It could be that they actually were working to restore your methylation function, and that can cause symptoms. The cold sores suggest that your immune system was becoming more active, and this is an expected effect of restoring methylation, folates and glutathione. Perhaps it would help to start with lower dosages of B12 and methylfolate.

If it is feasible for you to do some lab testing, the combination of a Health Diagnostics methylation pathways panel and a 40 plasma amino acids test or a urine amino acids test would help to determine what's going on with your methylation cycle, folate metabolism, glutathione level and the amino acids associated with all of the above.

The fact that you benefited from zinc and B6 suggests that you might have HPU (also called KPU), though you might just have been low in these essential nutrients. Again, if testing is feasible, you might consider the Metametrix ION profile, which I believe is available in Australia, and which will give information about other possible deficiencies. There is a fatty acids panel included in this profile as well, and that may help in sorting out your response to fish oils and evening primrose oil. It will also give information about potassium and magnesium. As you may know, the cells tend to be low in both in ME/CFS. Both glutathione and B6 seem to be involved in maintaining the intracellular magnesium levels, and the potassium level requires ATP, which is low in ME/CFS because of the mito dysfunction.

Manganese is also on the ION profile.

Sounds as though you have fructose malabsorption. MSG is a big source of glutamate, and the fact that you are sensitive to it could mean low B6 (or B2) or a state of excitotoxicity because of glutathione depletion. The testing I mentioned would help to sort this out. I don't know if your other food sensitivities are allergies (type 1 sensitivity, involving IgE and histamine) or IgG food sensitivities due to a leaky gut. Do you have symptoms associated with the gut?

I don't know what is causing the muscle tension. It could be mito dysfunction, causing low ATP production. ATP is actually used to release contraction of the muscle fibers, and to "cock" them for the next contraction. This could also explain the problems with strength and endurance. If the above testing is done, it would be possible to see what is going on with the mitochondria.

The collapsed vertebra in your neck could also be affecting the nervous system and causing some of the symptoms you described.

I guess that's about all I have to offer, based on the available information. If it is feasible to run the tests I mentioned, I think you could know a lot more about your condition and some clues as to how to deal with it better.

Best regards,

Rich

 

[Gavman]

Rich,

Thankyou for your time and candidness. I'm pretty good at finding my way around in the dark. Good information for me to chew and digest.
Waiting on the amino acid test, methyl panel will be on my when able to afford it list.
Cheers!

 

[Freddd]

Rich, I was wondering if you wouldn't mind giving me some input in whats going on with me. I know you have your head around this stuff much better than I do.
If you can see any patterns or avenues for more checking for me, i'd much appreciate it.

Vital precursors to CFS
Roaccutane for 6 months+, this dried me out and started giving me sensitivities. Big doses of vitamin a.
GF got kissed by a stripper on a cruise, i kissed her then got progressively worse when most colds/flus dont hit me. Then had wisdom teeth taking out soon after.
Shock/Freeze moment where my mouth went dry and i couldnt say or process anything - with then Gf when she wanted to break up with me.
Saw neck cracking chiropractors for a few months. BAD BAD BAD.

I have come off Effexor completely after 4 months on these supplements. And feel really good.

Supplements I benefit from:

SAM-e: As soon as i started taking i had massive energy fix, which has lasted - 400mgs a day or 1 tab each of TMG 500mgs & l-methionine 500mgs.
Zinc: Solgar zinc complex 15 mg zinc, molybdenum and manganese twice a day. This complex just feels so good for me. Improves my warmth/skin color.
P5P/B6 - 50mgs twice a day. I can feel quite heady with this, therefore i've been occasionally been putting the B2 100mgs in every couple of days. My dream recall and visualising behind closed eyes has improved 40% from these.
Evening Primrose Oil 1000 mgs/day - Tried plenty of other fish oils with no long term benefits, this is making me feel hydrated.
Potassium/Magnesium - potassium phosphate dibasic 33mgs /magnesium phosphate 65mgs - Magnesium on its on seemed to give no lasting help. This together has been amazing for feeling better. It seems like i only benefit from small doses every now and then though.

Supplements i have had troubles with:

B12/Folic Acid (tried 3 different types of b12 you and freddd suggested and 2 methylfolates) - these on their own or together. While taking this 6 months ago, after two months i started feeling more dehydrated, getting alot of cold sores and mouth aches.
B-Right - Felt good for a few days then it started making me feel sick.

Current improvements from supplementation:
Energy is about a 8-9/10. (may settle lower after a month off effexor), mood is now 8/10. - six months ago energy was a 4, mood was a 5.
Limited PEM crashes instead of all the time.

Improvements to go:
Less muscle pain/exhaustion/fatigue and more muscle endurance/strength. -- might manganese be indicated here? My muscle energy would be at about a 3/10.
Sex issues.

Main Food Cravings:

Chocolate
Calcium - Yoghurts, icecream, milkshakes.

Food sensitivities:

Fructose
Corn
Parsley
MSG
Vanillin flavoring
Goats milk
Rye

Tense body areas:
Right side of body is alot more stressed/problematic/disocciated.
Top few vertebrae of neck are collapsed.
Base of neck pain.
Tension stuck right behind the heart point.
Kidney/liver area tension.
Calves tight.
Numbness/tingling to pinkies on hands.
Muscle strength/endurance sucks

Past Important Notes
Mother had bipolar and was depressed majority of my life, classic helicopter mother.
Had cellulitis when i was 7, if i hadnt moved hospitals i would have probably died.
Bones are very strong, muscles have always been overly tight/tense.
School/life was too fast and i never felt like i had enough time to process.

Thanks for reading this. If anyone else wants to comment, please feel free.

Hi Gavman,

If you would like to work through the startup with mb12-adb12 and metafolin I would be willing to coach you through it. Since it starts strongly with a drop of potassium you need to be prpared to got 2000-3000mg of potassium as soon as certain symptoms hit andf also be ready to increase metadolin to 2400-3200mcg without any paradoxical folate deficiency and as high as 30,000mcg if there is severe paradoxical folate deficiency. You almost certainly had the problem becasue they worked so well or you took the wrong form of folate and had paradoxical folate deficiency.