Thoughts on the methylation treatment for CFS

richvank

Senior Member
Messages
2,732
Likes
946
hi rich, in the start of this thread you mention excitotoxicity, im wondering your opinion on amino acid phenylalinine(spelling??) causing this as its present in a lot of diet soft drinks. Do u have an opinion on injectable hydroxycobalmin, also i have access to a formula that contains 500mcg of hydroxy and 15mg of folic acid per ml. Also with other nutrients that you mention , in particular different amino acids, if on a high protein diet, is there a need to supplement these as most of these aminos are in meat as well as alot of b vitamins. Just as a point of interest, vegetables are considered high in vitamins but most only contain a few where as meat seems to contain a high content of many nutrients, the only one i can see that maybe lacking is vitamin c which is easily supplemented with and cheap as chips. I understand that b12 is high in meat but is subject to absorption factors as in pernicious anemia. i have had some success with b12 injections(at one time was using hydroxy 5000mcg 3 times a week), i folllow a high protein diet aka atkins style and was using alot of diet soft drink but after cutting back (no caffeine) i havent found it affecting my sleep(insomnia) in any positive way. Supplement wise i use fishoil, vit e and c, d, nac, lipoic acid and whey protein. One more question, do u know if they do the vitamin type testing u mention in australia. What a loaded paragraph ive written, dont think i could add too many more questions, lol!!!

cheers!!!
Hi, heapsreal.

The aspartame in diet soft drinks is composed of phenylalanine and aspartate. As far as I know, phenylalanine is not an excitotoxin, but aspartate is. Dr. Amy Yasko recommends no consumption of aspartame for people with autism or other disorders that involve methylation cycle dysfunction.

I think injectable hydroxocobalamin is fine to use as part of the protocol for treating the partial methylation cycle block in CFS. I prefer reduced forms of folate, rather than folic acid, but if a person has inherited a relatively fast form of the DHFR enzyme, and also does NOT (added in editing) have SNPs in the SHMT or the MTHFR enzymes, I think that folic acid could work, if used in high enough dosages. There is a company in New Zealand that distributes Thorne Research products in Australia, and one of them is 5-MTHF, which is a better form of folate to use, in my opinion.

Whether or not one needs to supplement amino acids if one is on a high-meat diet would depend on how well the digestive system is able to digest protein and absorb amino acids.

I know that the Metametrix Lab serves Australia, and they offer testing that includes information that will indicate vitamin deficiencies. Also, the Health Diagnostics and Research Institute in New Jersey, USA (formerly Vitamin Diagnostics) does receive samples from Australia, and they specialize in vitamin testing.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Likes
946
This is my 2nd time trying the folapro and B12 Perque. The first time I got sick after 3 months or even before. I was taking a half to a quarter a day of the folapro. As time went on I was having horrific pain and super charged up feelings. I stopped taking it and felt great brain wise. Better than I had in a long time. That was in 2007.

This time I am taking much less, although I went up to a 1/4 of a pill again and within one month was in horrific pain again. So much so that the other day I spent in bed. I had to stop the treatment for a few days. I am wondering now if I should take it every other day or maybe only twice a week. It's so hard to know. I do know that I feel better mentally on it. This is where it becomes tough because I feel better in some ways and every now and then it becomes too much for me. Decisions, decisions. Any advice?

UGH.
Hi, Spitfire.

I'm very sorry about the horrible pain you have experienced on this treatment. The fact that it does help you in some ways suggests that you do have a partial methylation cycle block.
As I recall, you reported that you may have lead toxicity from an old bathtub with a coating that broke down. Perhaps this treatment is stimulating your detox system, and it is mobilizing the lead, causing the symptoms.

As a researcher, not a physician, I cannot give individual treatment advice unless a physician is involved to evaluate my suggestions. However, I can give you general information, and perhaps you can discuss it with your physician.

Generally speaking, I think it's a good idea to "listen" to one's body and not push it when it is "saying" that it's in pain.

Many people have found that taking lower dosages of the supplements in the methylation protocol made the treatment more tolerable and paid off for them in the long run.

I think that the other supplements in the Simplified Treatment Approach (protocol at www.cfsresearch.org ) beside the FolaPro and Perque B12 are also important. They supply additional essential nutrients and supports for the methylation cycle and related pathways.

Experience of some people who had high body burdens of mercury has shown that it may be necessary to lower the body burden before the methylation cycle treatment is effective. The same may be true of lead.

Sodium-calcium EDTA and DMSA are considered effective chelators for lead.

I hope this information is helpful.

Best regards,

Rich
 

Misfit Toy

Senior Member
Messages
4,166
Likes
10,126
Location
USA
Thanks Rich,

I happen to think that using EDTA is not the way to go as I was even sicker on trying to chelate. I think trying to get the detox pathways working is the way to go first. When I did the EDTA, I was way sicker than now or even when in pain. I couldn't get out of bed for 2 weeks. I had no minerals and I think that was a huge part of it.

It's just a gut feeling I have on this one. Perhaps I will add more of the simplifed 5. I can't take the phos serine as I am horribly allergic to it. I have never done well on it in all of these years. DMSA might be a possibility.

Thanks Again!
 

richvank

Senior Member
Messages
2,732
Likes
946
Hi Rich,

I really would like to know your opinion on my experience taking antidepressants, as this may shed some light as to how to treat GI issues in CFS.

My main disabling symptoms, aside from my extreme fatigue, are my GI issues, specifically low HCL and low motility that cause horrible nausea, never-ending digestions, and food intolrances.

Well, I have been thinking for a long time that my past experience with antidepressants should explain some of the reasons for suffering theses symptoms. For a few months I was taking Ludiomil, a norepinephrine reuptake inhibitor, and then I switched to Prozac, a selective serotonin reuptake inhibitor, which I took for a few months more.

Ok, Back then, I suffered from similar symptoms, and ALL of them were CURED during the time I was on these antidepressants.

So, even though I certainly had huge dysbiosis issues, hypochloridia, probably leaky gut, etc., it seems that by raising either serotonin or norepinephrine available levels, my gut problems completely disappeared. Im not sure, but I think that by raising these neurotransmitters, I was mainly improving motilityCertainly I wasnt improving my ATP levels, and so the HCL amount, and I dont think I was healing my dysbiotic state either.

So it seems that motility could be the main think to look at, when it comes to GI issues in CFS.

What do you think about this?

Thank you so much,
Sergio

P.S. RE: glucuronidation, you wrote it is not dependant on the methylation cycle. However, as far as I know, the limiting factor for this detoxification route is ATP, and this would match with my tests results, showing low glucoronodation activity, as well as those of other patients Ive seen.
Hi, Sergio.

Thanks for the information on your digestive system improvement while on antidepressants. Based on your experience, it does seem as though abnormalities in neurotransmitter levels are primarily responsible for your digestive system problems. As far as I know, serotonin and acetylcholine are the two neurotransmitters most associated with intestinal motility. As you noted, Ludiomil is primarily a norepinephrine reuptake inhibitor, but it also has a weak serotonin reuptake inhibition effect. Perhaps the effect of both of these antidepressants in raising your intestinal serotonin levels is what caused the improvement. Did you notice whether one of these antidepressants helped your intestinal function better than the other? In particular, did the Prozac help more? Or were they about the same?

Thanks for your comment on glucuronidation. I hadn't considered the secondary effect of the methylation cycle block on lowering ATP production by the mitochondria. I think you may be correct about this in your case. I've seen test results from other cases of CFS in which the glucuronidation pathway tested normally, so this may depend on how severe the mitochondrial dysfunction is in a given case.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Likes
946
Thanks Rich,

I happen to think that using EDTA is not the way to go as I was even sicker on trying to chelate. I think trying to get the detox pathways working is the way to go first. When I did the EDTA, I was way sicker than now or even when in pain. I couldn't get out of bed for 2 weeks. I had no minerals and I think that was a huge part of it.

It's just a gut feeling I have on this one. Perhaps I will add more of the simplifed 5. I can't take the phos serine as I am horribly allergic to it. I have never done well on it in all of these years. DMSA might be a possibility.

Thanks Again!
O.K., Spitfire.
You're welcome. I hope you find something that works.

Rich
 
Messages
1,270
Likes
122
I feel I'm sensitive enough to hold a bottle and know if it's good for me (or not). I'm at a friend's house, she was offering me some homeopathic remedies for molds. Unfortunately there are six to eight in a bottle, and I just feel yicky yucky when holding the bottle and don't know what's bothering me.

She just gave me her Thorne 5-MTHF. I felt like this had cannonball power. It was so strong an energy just holding it I wasn't sure if I should take it. If I did, I'd be the one taking a pinch of salt's worth every other day.

I know from my Yasko genetics I have a weakness in making it.
 

slayadragon

Senior Member
Messages
1,122
Likes
530
Location
twitpic.com/photos/SlayaDragon
I feel I'm sensitive enough to hold a bottle and know if it's good for me (or not). I'm at a friend's house, she was offering me some homeopathic remedies for molds. Unfortunately there are six to eight in a bottle, and I just feel yicky yucky when holding the bottle and don't know what's bothering me.

She just gave me her Thorne 5-MTHF. I felt like this had cannonball power. It was so strong an energy just holding it I wasn't sure if I should take it. If I did, I'd be the one taking a pinch of salt's worth every other day.

I know from my Yasko genetics I have a weakness in making it.

I had such a HUGE response to the FolaPro when I first started taking it that I know I was really deficient in it. And I've taken it continuously for the past 2 1/2 years, since I started getting well.

Thinking back, I have to say that I don't know that I'd ever have made any progress at all without it.

I know a number of people with CFS who have done the extreme mold avoidance thing and used a whole lot of cholestyramine, yet never lowered their reactivity more than a bit.

I think that the neural therapy was helpful for me, and so was the Valcyte. But the FolaPro, along with varying amounts of hydroxy and then methyl B12, very well may have been even more important.

Thanks Rich!

Best, Lisa
 

serg1942

Senior Member
Messages
504
Likes
1,004
Location
Spain
Did you notice whether one of these antidepressants helped your intestinal function better than the other? In particular, did the Prozac help more? Or were they about the same?

Hi Rich,

Although I am not 100% sure, as it was about 5-6 years ago, and at that time I didn't pay much attention to these subjects (I just wanted a magic bullet to cure me! ;-), I think remember that both of them had the same effect on curing my GI symptoms (I say cure, because they were completely cured!! I could take whatever, in whatever amount, and always had perfect digestions! The same as when I was healthy!).

Best regards,
Sergio
 

Sushi

Moderation Resource Albuquerque
Messages
19,868
Likes
34,868
Location
Albuquerque
Hi Rich,

Interesting discussion. Like so many of us I have also taken "anti-depressants" though in my case they were given to my by my autonomic specialist to help with orthostatic intolerance--which they really did! (Probably due to the vasoconstriction of norepinephrine.) He thought (based on research I don't have at hand) that many of us have damage to our norepinephrine receptors on the peripheral nerves (I think that is where is said the damage was).

He had success giving very low doses of Strattera (norepinephrine reuptake inhibitor) and Cymbalta (combination norep and serotonin reuptake inhibitor). The interesting thing is that for me, while it made a huge difference with orthostatic intolerance, it also "cured" a pretty painful case of fibromyalgia and my temperature dysregulation as well (freezing, but freezing at 72 degrees!). These benefits have stayed with me though I haven't taken either drug for a couple of years.

I don't know if there are any commonalities you can spot between my response and Sergio's but the roles of neurotranmitters in CFS don't seem to be fully known.

I'd be fascinated if you have any more thoughts on this.

Sushi
 

slayadragon

Senior Member
Messages
1,122
Likes
530
Location
twitpic.com/photos/SlayaDragon
FolaPro

With regard to the FolaPro being like rocket fuel:

When people start taking this supplement, it can be hard to get to a small enough dose. Even crushing the pills and taking the smallest amount can be too much. And it has a tendency to sneak up on you.

What I found useful was to not try to control the FolaPro too much, and instead use the B12 as the brake/gas.

My observation was that if I wasn't giving my body supplemental FolaPro as well as B12, nothing would happen. And (at least at the beginning) my body wasn't holding onto the B12 for very long. Within a couple of days, it was out of my system.

(When I told Dr. Guyer this, he chipped in, "Yes, and sometimes it can be out of the system within a couple of hours.")

The FolaPro, on the other hand, stayed in my system for months. And it was cumulative.

So on those occasions when things started to feel too speedy, I just stopped taking any B12 at all. Then I would re-start the B12 gradually, when things felt more under control again.

Until I learned this little trick, the whole thing felt like a runaway train. I don't know if this trick has helped many other people, but it was useful for me and a few other folks I was corresponding with at the time.

Of course, the thing that allowed me to do a speedy detox without getting sick (and thus not have to slow down the train too much) was mold avoidance. But it was still good to have the brake on hand, in the event that I needed/wanted it.

Best, Lisa
 

slayadragon

Senior Member
Messages
1,122
Likes
530
Location
twitpic.com/photos/SlayaDragon
Hi, Sergio.

Thanks for the information on your digestive system improvement while on antidepressants. Based on your experience, it does seem as though abnormalities in neurotransmitter levels are primarily responsible for your digestive system problems. As far as I know, serotonin and acetylcholine are the two neurotransmitters most associated with intestinal motility. As you noted, Ludiomil is primarily a norepinephrine reuptake inhibitor, but it also has a weak serotonin reuptake inhibition effect. Perhaps the effect of both of these antidepressants in raising your intestinal serotonin levels is what caused the improvement. Did you notice whether one of these antidepressants helped your intestinal function better than the other? In particular, did the Prozac help more? Or were they about the same?

Best regards,

Rich
As you know, when I first started the methylation supplements (when I was living in my moldy house), I got very severe constipation.

Dr. Guyer suggested Choline Citrate (by Perque), which supports acetylcholine.

This actually did work for the constipation. But it gave me rip-roaring headaches.

I don't do very well screwing with the neurotransmitters in any way. All my experiences with antidepressants and stuff like SAMe were total disasters.

Lactulose worked quite well for the constipation, for a while. Then when I got to a higher level of mold avoidance, my digestive system (which had been messed up since I was a little kid) seemed to repair itself and I stopped having any constipation at all.

Even the cholestyramine was fine, if I took Vitamin C (a good thing in itself) to go along with it.

Lisa