Recommended brands of SAM-e and d-ribose? (on Freddd's protocol)

[Soporificat]

I'm doing @Freddd 's protocol. I've been on it for 5 months, have the deadlock quartet in place, and I'm titrated up to 6mg Mb12 and 2.5 Adb12. Currently taking 12 mg methyfolate to keep out of insufficiency, as well as about 1,200mg potassium supplemented.

Anyway, I'm still feeling pretty non-functional (I'm ME/CFS according to the ICCC, btw) so I'm thinking I should add in SAM-e and r-ribose and see what happens.

Would love any advice!! But, especially brands and dosages. Also, any pitfalls with taking them?

Also, do you think this is the right move for me, or should I first try to really ratchet up the b12's to a much higher dose?

Thank you!!

 

[Critterina]

I always see SAMe in 400 mg tablets, so that's what I took. I've gone back to methionine, since it's so much less expensive and I can't tell the difference. No brand recommendations, sorry. I bought it at Costco. I bought Source Naturals once when I found it on sale. Both were good.

I use 5 mg of D-ribose, once or twice a day. I bought the powder, not pills. Seems to help me with circulation in hands and feet. I buy ARO (a VitaCost brand). I tried NOW brand, but it had a repulsive chemical smell to it, so I took it back to the store. I also tried Sedona Labs, but there is silica in it, and the scoop is twice as big for a 5 g serving. So I'm back to ARO.

 

[Freddd]

I'm doing @Freddd 's protocol. I've been on it for 5 months, have the deadlock quartet in place, and I'm titrated up to 6mg Mb12 and 2.5 Adb12. Currently taking 12 mg methyfolate to keep out of insufficiency, as well as about 1,200mg potassium supplemented.

Anyway, I'm still feeling pretty non-functional (I'm ME/CFS according to the ICCC, btw) so I'm thinking I should add in SAM-e and r-ribose and see what happens.

Would love any advice!! But, especially brands and dosages. Also, any pitfalls with taking them?

Also, do you think this is the right move for me, or should I first try to really ratchet up the b12's to a much higher dose?

Thank you!!

Hi Soporificat,

What brands of MeCbl and AdoCbl are you taking? How are you taking them?. I think that the quantity is plenty for now and that whatever is holding it up will give better results than just increasing the dose. What has changed in 5 months, what has remained the same and what has gotten worse?

Then the next layer of things that might help is more magnesium, more Vit D if not up to 5000Iu, more zinc (up to 65mg or so total might be helpful), TMG, D-ribose, biotin. It might take ALL of them. Also, if taking ALCAR, try L-carnitine fumarate, if trying the fumarate, try ALCAR or try the Liquid freebase carnitine form Jarrow. I find Sigma Tau makes the best carnitine and is available under any number of marketing brands. Just change or add 1 thing at a time so you know what is happening. Good luck.

\

 

[Soporificat]

@Critterina --thank you for your recs!

@Freddd --
I'm taking Anabol Naturals Dipencoplex and Enzymatic B12 Infusion. I take both sublingually, without sucking or chewing on them.

The most surprising thing that has happened is that I was going prematurely gray and a significant part of that hair is now growing in brown! It's great to have such a clear and startling indication that something beneficial is happening because it gives me the faith to keep persisting in getting the methylation right. Also, my skin has been looking really great. Now, I'm not doing the methylation for vanity reasons, but as my doctor reminded me, hair and skin are excellent indicators of general health. So, there's that.

Other people have noticed that some of my cognition issues are getting better. I'm starting to think so, too. I play the piano, and ME has destroyed my ability to play without constant, clumsy, and ridiculous mistakes. Just recently I've noticed that my concentration and agility are greatly improved. Also, recently I noticed that I'm not as overwhelmed by sensory input. For example, some noises that I used to find horrendous, like almost painful to listen to, I now realize are totally within normal ranges. It's funny that I used to wonder how other people could possibly tolerate those sounds, and then one day, about a month ago I suddenly realized, Oh, those noises are not pleasant, but they are really not that bad...oops!

Still deeply tired, still weak, still overwhelmed by sensory input, and I still get migraines if I challenge the ME/CFS energetic boundaries. It's possible that the methylation has deepened the tiredness and weakness, as well as the migraines when I try to step out of bounds.

Of the support factors you mentioned I am currently taking:
600mg of magnesium (magnesium malate)
5000iu of vit D
25mg zinc
1000mg TMG
400mcg biotin
855mg L-carnitine fumarate

So, based on your comments, I will increase the zinc to 65mg, and try ALCAR instead of the L-carnitine fumarate, and add in d-ribose. What do you think of the dosages of biotin and magnesium? Should they be increased? How much d-ribose should I shoot for?

Any other comments/suggestions of things to try? Your thoughts on SAM-e?

One other thing: the b-complex I'm taking is very low dose, and i wanted to check with you if you think it's OK. I take only one pill per day, which gives me:
thiamine 25mg
Riboflavin 25mg
Niacin 150mg
B-6 55mg
methylfolate 800mcg
methylcobalamin 1,000mcg
biotin 400mcg (this is where I get my biotin from)
pantothenic acid 150mg
choline 50mg
inositol 50mg
PABA 50mg

Thank you Freddd!!!!

 

[Freddd]

@Critterina --thank you for your recs!

@Freddd --
I'm taking Anabol Naturals Dipencoplex and Enzymatic B12 Infusion. I take both sublingually, without sucking or chewing on them.

The most surprising thing that has happened is that I was going prematurely gray and a significant part of that hair is now growing in brown! It's great to have such a clear and startling indication that something beneficial is happening because it gives me the faith to keep persisting in getting the methylation right. Also, my skin has been looking really great. Now, I'm not doing the methylation for vanity reasons, but as my doctor reminded me, hair and skin are excellent indicators of general health. So, there's that.

Other people have noticed that some of my cognition issues are getting better. I'm starting to think so, too. I play the piano, and ME has destroyed my ability to play without constant, clumsy, and ridiculous mistakes. Just recently I've noticed that my concentration and agility are greatly improved. Also, recently I noticed that I'm not as overwhelmed by sensory input. For example, some noises that I used to find horrendous, like almost painful to listen to, I now realize are totally within normal ranges. It's funny that I used to wonder how other people could possibly tolerate those sounds, and then one day, about a month ago I suddenly realized, Oh, those noises are not pleasant, but they are really not that bad...oops!

Still deeply tired, still weak, still overwhelmed by sensory input, and I still get migraines if I challenge the ME/CFS energetic boundaries. It's possible that the methylation has deepened the tiredness and weakness, as well as the migraines when I try to step out of bounds.

Of the support factors you mentioned I am currently taking:
600mg of magnesium (magnesium malate)
5000iu of vit D
25mg zinc
1000mg TMG
400mcg biotin
855mg L-carnitine fumarate

So, based on your comments, I will increase the zinc to 65mg, and try ALCAR instead of the L-carnitine fumarate, and add in d-ribose. What do you think of the dosages of biotin and magnesium? Should they be increased? How much d-ribose should I shoot for?

Any other comments/suggestions of things to try? Your thoughts on SAM-e?

One other thing: the b-complex I'm taking is very low dose, and i wanted to check with you if you think it's OK. I take only one pill per day, which gives me:
thiamine 25mg
Riboflavin 25mg
Niacin 150mg
B-6 55mg
methylfolate 800mcg
methylcobalamin 1,000mcg
biotin 400mcg (this is where I get my biotin from)
pantothenic acid 150mg
choline 50mg
inositol 50mg
PABA 50mg

Thank you Freddd!!!!

Hi Soporificat,

It's good to hear of the changes occurring in the neurological and sensory areas. These are often slow, taking months to years for the changes to complete. One doctor I was reading some years back said that it took 5 years of constant treatment for the neurological healing to become permanent.

One comment about the b-complex. It might work better if cut in half and taken twice a day. I charted out my symptoms for years and found several subtle 24 hour cycles with certain symptoms including pain and heart palpitations happening most right about the time of my next dose. I found that b-complex once a day was a problem. The serum halflife on a lot of items just wasn't long enough for 24 hour dosing.

I'm always playing with these things, trying different combinations and timings. SOmetimes I find an hours difference in

Right now I'm taking the SAM-e, 800mg (NautreMade from Costco works as well or better as any I've tried) and 1000mg of LCF and 4mg of Metafolin upon getting up. I don't eat until 1 pm. After getting the without food items in me for 30 minutes, I then start my MeCbl and AdoCbl. I have found that I get more of a neurological brightening in the morning this way and that lasts all day as long as I keep adding the MeCbl and AdoCbl. I seem to be getting a next round of CNS healing going. It is slow so difficult to know which direction things are going for several weeks.

When you increase zinc it can be distressing to the stomach so titrate it carefully, say 12.5mg at a time added to food. Omega3 oils can often be helpful.

Keep a diary. Watch what changes when you make changes. Sometimes they don't show up fro weeks. Good health.

 

[Soporificat]

@Freddd Thank you for all your advice! Based on what you said, I'm going to take the LCF in the morning instead of at lunch, which is what I do now. Also, I will cut my b-complex into two doses.

 

[Critterina]

I just found an almost-empty of Jarrow's D-ribose. It must have been fine, or I would have remembered.

 

[Lillybelle]

@Freddd @alex3619 @Sushi @heapsreal

1.Looking for recommendations on level (mg) and brand of SAM E to start on?
2. Would like also to add D-Ribose again (mg) to start, any brand preferences and is powder/chewables preferable for absorption ?
(already take CQ10,Lcarnfum,potassium, calcium ascorbate, magnesium(600mg), L-gltuthione)
I'm ordering via Iherb

Have been doing revised methylation protocal for about 2 months, generally following Myhill but adding adenosylcbl, LCF CQ10. Brain and mental fatigue much improved- HALLEJLUJAH! but physical pain (in legs and PEM) as bad if not worse worse.Also flare up of sinusitus and blocked ears.

Any guidance gratefully appreciated.
Best Llb

 

[alex3619]

@Lillybelle, I am not familiar enough with SAM-E to recommend anything. Looking at your protocol though, if you can tolerate it I would suggest adding either gamma tocopherol, or a mixed vitamin E. Avoid alpha tocopherol. This will assist the function of CoQ and glutathione and the vitamin C. I am presuming you are avoiding lipoic acid due to the possible issue of metal mobilization, otherwise lipoic is a good idea too. In any case many of us have almost undetectable vitamin E, its at so low a level.

 

[Freddd]

@Freddd @alex3619 @Sushi @heapsreal

1.Looking for recommendations on level (mg) and brand of SAM E to start on?
2. Would like also to add D-Ribose again (mg) to start, any brand preferences and is powder/chewables preferable for absorption ?
(already take CQ10,Lcarnfum,potassium, calcium ascorbate, magnesium(600mg), L-gltuthione)
I'm ordering via Iherb

Have been doing revised methylation protocal for about 2 months, generally following Myhill but adding adenosylcbl, LCF CQ10. Brain and mental fatigue much improved- HALLEJLUJAH! but physical pain (in legs and PEM) as bad if not worse worse.Also flare up of sinusitus and blocked ears.

Any guidance gratefully appreciated.
Best Llb

Hi Lillybelle,

The glutathione MAY be preventing everything you are trying to do to get methylation going. It can cause the excretion of virtually all the b12 in a persons body causing anything from partial methylation block to methyltrap. It acts like nitrous oxide and cyanide in these matters. It takes about 2 weeks of methyltrap, in the CNS or peripheral nerves, for demyelination to possibly start. It is easy to take enough glutathione to cause a deep methyltrap that can worsen or induce noticeable amounts of SubAcute Combined Degeneration damage in 4-6 weeks.

One researcher well acquainted with the biochemistry of b12s and folates I have spoken with on the phone about glutathione considers it "too dangerous to use in any way".

With glutathione on board all the MeCbl, AdoCbl, HyCbl and l-methylfolate can be entirely useless. It blocks the pathways that the SAM-e might help if you were not taking glutathione. About 6 years ago I and 9 other people did a glutathione or glutathione precursors (l-glutamine and NAC or whey) trial. All 10 of us had previously had good to excellent results with active b12s and Metafolin. These good results were undone and neurological damage was done in all 10 of us in 6 weeks when we canceled the trial because of the damage it was doing. I have NEVER fully recovered from the damage done then. That marked the end of my peak of neurological healing. The pain in the legs may be due to this effect, or not. For me glutathione caused methyltrap in hours and body-wide inflammation was going strong by the next day and increasing daily. Over a few weeks IBS, asthma, MCS, allergies, joint and muscle pain and so much more just kept increasing. I had was is popularly called "glutathione detox" or more accurately severe methyltrap on multiple triage levels (depending on all factors it might be in one or more triage levels since they each respond separately

I find the Nature Made SAM-e to be noticeably effective. I know of no brand effect with D-ribose. I very much agree that a high gamma E would be better. I like the NOW Foods High Gamma E.

Chronic sinus infections & blocked ears (one of it's symptoms) is characteristic of MeCbl deficiency.

Good luck.

 

[IreneF]

When I was taking SAMe I got whatever was cheapest because the pills all looked the same, and they were all made in Italy. So I figured that the companies were buying them from the same place and packaging them under different brand names. This is very common in the drug, supplement, and cosmetic industries.

 

[Lillybelle]

@alex3619 thanks for the heads up on the different vit e forms still learning Will get some Gamma E. The other reason for looking at D-Ribose was the heart functioning. I appear to have some fluid in the Perycardium (sac that holds the heart) and have had consistent chest pain since Jan 2014 after I came down with a savage flu/chest infection.

It could just be more dysfunctioning ATP. The heart is a muscle right? Anyway I do think its part of the overall low level virus, and the GP says the fluid in the sac could be a virus but she does not know for sure. Didnt suggest anything fo the pain though It seems strange to have chest pain all the time. The only thing I can see for it is NSAD's, not good for the gut.

@ Freddd thankyou kindly for your generosity in responding. I'll have a look at the Nature's Made Sam E.
Re L -Glutathione, its not actual Glutathione its L-Cysteine L-Glutamic Acid and Glycine. Its on the Myhill protocal , which I believe was formulated with Rich> However I'm happy to back off on this one if you think it will help with the lacticacid particularly in the quads and in the Psoas and ITB (Illiotibial Bands).

 

[Freddd]

@alex3619 thanks for the heads up on the different vit e forms still learning Will get some Gamma E. The other reason for looking at D-Ribose was the heart functioning. I appear to have some fluid in the Perycardium (sac that holds the heart) and have had consistent chest pain since Jan 2014 after I came down with a savage flu/chest infection.

It could just be more dysfunctioning ATP. The heart is a muscle right? Anyway I do think its part of the overall low level virus, and the GP says the fluid in the sac could be a virus but she does not know for sure. Didnt suggest anything fo the pain though It seems strange to have chest pain all the time. The only thing I can see for it is NSAD's, not good for the gut.

@ Freddd thankyou kindly for your generosity in responding. I'll have a look at the Nature's Made Sam E.
Re L -Glutathione, its not actual Glutathione its L-Cysteine L-Glutamic Acid and Glycine. Its on the Myhill protocal , which I believe was formulated with Rich> However I'm happy to back off on this one if you think it will help with the lacticacid particularly in the quads and in the Psoas and ITB (Illiotibial Bands).

HiLlillybelle,

YES! lactic acid. I suffered from lactic acid in most all my muscles for 17 years. I have no idea about fluid in the pericardium. I found that congestive heart failure went away for me when my muscles stopped atrophying and started healing and growing after I added the fourth of the Deadlock Quartet, L-carnitine fumarate. I also lost 85 pounds of water and found out that folate deficiency caused edema in me. AdoCbl and LCF often normalizes ATP production, sometimes biotin is needed to get it going. I have no idea about that specific set of precursors but if it works as well as l-glutamine and N-Acetyl Cysteine then it could indeed cause that problem.

 

[Lillybelle]

Hi @Freddd your poor thing. I feel your pain. Every day you wake up and feel not again!
I used to be an athlete so I used to have those lacticy days when I overtrained maybe once a month. But always recovered after 2 days and knew I had pushed myself too hard.
These days I think how could I do any less? Well its possible and I'm thankful for the function I do have especially compared to those who cannot walk.

Anyway, the sinuses and ears appear to be a bot better since backing off the Lglutathione. And I have ordered some Gamma and D-Ribose.

I must say though Freddd I am extremely grateful to you sharing your time and of course the wonderful Rich (RIP) and Dr. Myhill for giving us "some" treatment thats not going to make us extremely sick like an experimental drug (or most drugs for that matter). After 6 weeks of Methylation I am sitting up on the couch as we speak. Not lying down which is the normal modus operandum of the last few years. My memory is improved and my tolerance for reading much improved.

Unfortunately my heart and chest pain persist. Anyway I am vvvvery thankful for the decent mental improvements.

I also did an assignment for an online course yesterday on the "neurobiology of M.E." for a Coursera course Around 1000 words. Genetics, biology and epigentics are next on my list.

And how are you doing @Freddd are you still revelling in good health?

 

[Freddd]

Hi @Freddd your poor thing. I feel your pain. Every day you wake up and feel not again!
I used to be an athlete so I used to have those lacticy days when I overtrained maybe once a month. But always recovered after 2 days and knew I had pushed myself too hard.
These days I think how could I do any less? Well its possible and I'm thankful for the function I do have especially compared to those who cannot walk.

Anyway, the sinuses and ears appear to be a bot better since backing off the Lglutathione. And I have ordered some Gamma and D-Ribose.

I must say though Freddd I am extremely grateful to you sharing your time and of course the wonderful Rich (RIP) and Dr. Myhill for giving us "some" treatment thats not going to make us extremely sick like an experimental drug (or most drugs for that matter). After 6 weeks of Methylation I am sitting up on the couch as we speak. Not lying down which is the normal modus operandum of the last few years. My memory is improved and my tolerance for reading much improved.

Unfortunately my heart and chest pain persist. Anyway I am vvvvery thankful for the decent mental improvements.

I also did an assignment for an online course yesterday on the "neurobiology of M.E." for a Coursera course Around 1000 words. Genetics, biology and epigentics are next on my list.

And how are you doing @Freddd are you still revelling in good health?

Hi Lillebelle,

I did a long term test of CL methyl b12. It dissolved too fast for me to really absorb much. I couldn't get sufficient to support CNS healing or maintenance. These things kind of sneak up on a person. As soon as I realized the direction it was going was the end of the long term test. I had startup all over again in CNS only when I went back 3x10mg sc injections daily. I am feeling better by the day. I'm glad to hear of your improvement. I'm not a doctor remember, but my heart health improved considerably after AdoCbl and LCF. That improved at the same time all my long standing muscle problems went away and they started normalizing and growing for the first time in more than 25 years. And then it took a year after I got the balance right. This was about 6-7 years into it in all, about 2 years after starting LCF.

Fortunately I'm currently walking well now. I have some problem keeping my feet pointing in the same direction. Without the injectable B12 3x10mg daily, I would be in trouble in a couple of months or less.

In college I took a comparative and physiological psychology course. That was the thermodynamics of psychology; neural anatomy and function and differences between species. Very interesting and by far the toughest course I have ever taken.

 

[Lillybelle]

Hi Lillebelle,

I did a long term test of CL methyl b12. It dissolved too fast for me to really absorb much. I couldn't get sufficient to support CNS healing or maintenance. These things kind of sneak up on a person. As soon as I realized the direction it was going was the end of the long term test. I had startup all over again in CNS only when I went back 3x10mg sc injections daily. I am feeling better by the day. I'm glad to hear of your improvement. I'm not a doctor remember, but my heart health improved considerably after AdoCbl and LCF. That improved at the same time all my long standing muscle problems went away and they started normalizing and growing for the first time in more than 25 years. And then it took a year after I got the balance right. This was about 6-7 years into it in all, about 2 years after starting LCF.

Fortunately I'm currently walking well now. I have some problem keeping my feet pointing in the same direction. Without the injectable B12 3x10mg daily, I would be in trouble in a couple of months or less.

In college I took a comparative and physiological psychology course. That was the thermodynamics of psychology; neural anatomy and function and differences between species. Very interesting and by far the toughest course I have ever taken.

Hi @Freddd great news to hear you are walking well again. Wow 10mg methylb 3 times a day. I'm currently taking 1 mg sublingual twice a day, sometimes 3. What is CL methyl B12?
Thanks for telling me that it took some time for you to get well. That gives me greater hope that I could improve further over time. I shall persevere. I am also taking the adensl and LCM that you recommended along with the other parts of Myhill protocal.

You were sick for many years? 5, 10? I'm so sad to hear you and many others here so unwell for so long in their lives.
But inspired to hear you are in remission? Would you say you are still in remission? Are you 100% (except for the feet) do you think? If its too personal I understand you may not wish to answer.
My very best wishes for your continued good health
llb

 

[Freddd]

Hi @Freddd great news to hear you are walking well again. Wow 10mg methylb 3 times a day. I'm currently taking 1 mg sublingual twice a day, sometimes 3. What is CL methyl B12?
Thanks for telling me that it took some time for you to get well. That gives me greater hope that I could improve further over time. I shall persevere. I am also taking the adensl and LCM that you recommended along with the other parts of Myhill protocal.

You were sick for many years? 5, 10? I'm so sad to hear you and many others here so unwell for so long in their lives.
But inspired to hear you are in remission? Would you say you are still in remission? Are you 100% (except for the feet) do you think? If its too personal I understand you may not wish to answer.
My very best wishes for your continued good health
llb

Hi Lillybelle,

My story in detail is at the start of B-12, The Hidden Story as adapted by Cort from my introduction THE MOST AMAZING B12 STORY YOU HAVE EVER HEARD in the introductions thread.

A quick summary then. From Dec 1987 until May 21st, 2003 at 6:05 pm I was totally crashed. From how I would say it now I got sick with a "miscellaneous entero virus" that was going around. I had been on the edge with FMS for 20 years at that point and sick my whole childhood with 6 streps a years, missing 1/6 of the school year until I started foods with folic acid then that went up to 1/3 the school year the rest of my schooling. I started getting pneumonias in addition to the streps. On that day in December '87 I crashed. I could barely crawl to the toilet to vomit. I gained about 100 additional symptoms in the next few weeks as the illness retreated and everything else stayed and got worse. My wife recovered in 3 months. I didn't recover. By 2003 I was 12 years into congestive heart failure (80% mortality in first 10 years) and demyelinating nervous system (Sub Acute Combined Degeneration). Then on May 21st, 2003 I took my first ENZY tablet. In 10 minutes I could feel the difference. In effect I rushed for the next 45 minutes. At that point a lifelong depression had lifted and the lights literally came on. I could climb a flight of stairs without resting each couple of steps. I knew my life was changed right then and there. I was amazed at the difference MeCbl made over CyCbl. It was night and day. One made me sicker for decades but tested "in range" and kept my blood "borderline" and the docs were all puzzled and the other worked amazingly and who cares how it tested. After a month or two my voice changed in mid word from rough and raspy back to my full blown smooth first tenor. Suddenly strawberries were wonderful again. The whole world smelled different and lots more odors

I no longer have the symptoms of FMS, CFS and congestive heart failure. I lost 85 pounds of water, 40-50 pounds of fat and gained 50 pounds of muscle which had atrophied which couldn't easily be seen as I was covered in waterlogged fat. My abdomen was blown up hard like a basket ball and I could hardly breath.

At this point I am the healthiest I have ever been in my life. I have some damage but then most do by 66.



I still have the results of 3 fractured vertebras, mashed disks, damaged dorsal horns plus SACD damage. I have had one minor case of the flu since I had a "last sore throat upper respiratory illness" about 1 year into the MeCbl and 3 months into AdoCbl. I have various unhealed damages from both. What I don't have is CFS/FMS/ME. I have 150 fewer symptoms of note. I have a better than 90% reduction of overall pain. I can hike and climb local mountains and hills, I can fix the roof and rebuild decks and paint the house. However I can't do it as fast as I could in my 30s before crashing. It was the SACD remission status that changed. The CNS deficiency started giving central symptoms and a feeling fatigued that didn't have to do with lack of body capacity and increase of centrally caused pain. If I had kept that going for another year I might have had FMS all over again. However, I corrected things as soon as I was aware so I had a flare of SACD. The specific FMS/CFS symptoms have never come back unless you want to define these as demyelinating diseases.

I did find that it is important to avoid a group of things as they all trigger partial methylation block or methyltrap. So I avoid cyanide, glutathione and excessive nitrous oxide (and take prophylactic b12 injection before having it), whey, glutathione precursors, NAC, folic acid, folinic acid and too many vegetable folates, white flour products (folic acid) and milk products (different problem). I can eat butter and heavy cream but not half and half.

My feet and the based of my thumbs are very painful and are my most limiting things. Fifteen years ago my whole arm from shoulder to all fingers were too painful to use, all from neurological problems. So I'm about 95%, for my age. I can't do what I used to be able to with my hands. My limits now are set by aging joints, pain and stiffness as lots of old injuries come back to haunt me. I'm not sick and don't have FMS and CFS.

A very peculiar thing in the new breed of medical records, there is no way to say "recovered" for CFS/FMS or a whole lot of other things. A person looks at my medical record and my overall condition is based on my diagnoses when near death 11-13 years ago. And they have never recognized and still don't, MeCbl deficiency, AdoCbl deficiency, l-methylfolate deficiency and LCF deficiency. So data mining of these records will never be able to catch such things in anybody actually getting well. They are not designed with the expectation that people can get better. Correct and incorrect diagnoses are forever. Looking at the summary page one would expect a housebound inactive sick person not somebody who can hike 5 miles with a 2000 foot change in altitude each way.

Other than the neurological damage, most of my pain and limits is caused by the 1972 car wreck when a man ran a red light and t-boned me.

Have fun and be in good health.

 

[rosie26]

I always see SAMe in 400 mg tablets, so that's what I took. I've gone back to methionine, since it's so much less expensive and I can't tell the difference. No brand recommendations, sorry. I bought it at Costco. I bought Source Naturals once when I found it on sale. Both were good.

I use 5 mg of D-ribose, once or twice a day. I bought the powder, not pills. Seems to help me with circulation in hands and feet. I buy ARO (a VitaCost brand). I tried NOW brand, but it had a repulsive chemical smell to it, so I took it back to the store. I also tried Sedona Labs, but there is silica in it, and the scoop is twice as big for a 5 g serving. So I'm back to ARO.

D Ribose has been significantly noticeable in alleviating pain in the hands for me too. I would not be able to use the keyboard on my laptop as much as I do without D Ribose.

 

[Lillybelle]

D Ribose has been significantly noticeable in alleviating pain in the hands for me too. I would not be able to use the keyboard on my laptop as much as I do without D Ribose.

Thanks @rosie26 I've ordered some Jarrow I think. Do you use 5 grams also?

 

[Lillybelle]

Hi Lillybelle,

My story in detail is at the start of B-12, The Hidden Story as adapted by Cort from my introduction THE MOST AMAZING B12 STORY YOU HAVE EVER HEARD in the introductions thread.

A quick summary then. From Dec 1987 until May 21st, 2003 at 6:05 pm I was totally crashed. From how I would say it now I got sick with a "miscellaneous entero virus" that was going around. I had been on the edge with FMS for 20 years at that point and sick my whole childhood with 6 streps a years, missing 1/6 of the school year until I started foods with folic acid then that went up to 1/3 the school year the rest of my schooling. I started getting pneumonias in addition to the streps. On that day in December '87 I crashed. I could barely crawl to the toilet to vomit. I gained about 100 additional symptoms in the next few weeks as the illness retreated and everything else stayed and got worse. My wife recovered in 3 months. I didn't recover. By 2003 I was 12 years into congestive heart failure (80% mortality in first 10 years) and demyelinating nervous system (Sub Acute Combined Degeneration). Then on May 21st, 2003 I took my first ENZY tablet. In 10 minutes I could feel the difference. In effect I rushed for the next 45 minutes. At that point a lifelong depression had lifted and the lights literally came on. I could climb a flight of stairs without resting each couple of steps. I knew my life was changed right then and there. I was amazed at the difference MeCbl made over CyCbl. It was night and day. One made me sicker for decades but tested "in range" and kept my blood "borderline" and the docs were all puzzled and the other worked amazingly and who cares how it tested. After a month or two my voice changed in mid word from rough and raspy back to my full blown smooth first tenor. Suddenly strawberries were wonderful again. The whole world smelled different and lots more odors

I no longer have the symptoms of FMS, CFS and congestive heart failure. I lost 85 pounds of water, 40-50 pounds of fat and gained 50 pounds of muscle which had atrophied which couldn't easily be seen as I was covered in waterlogged fat. My abdomen was blown up hard like a basket ball and I could hardly breath.

At this point I am the healthiest I have ever been in my life. I have some damage but then most do by 66.



I still have the results of 3 fractured vertebras, mashed disks, damaged dorsal horns plus SACD damage. I have had one minor case of the flu since I had a "last sore throat upper respiratory illness" about 1 year into the MeCbl and 3 months into AdoCbl. I have various unhealed damages from both. What I don't have is CFS/FMS/ME. I have 150 fewer symptoms of note. I have a better than 90% reduction of overall pain. I can hike and climb local mountains and hills, I can fix the roof and rebuild decks and paint the house. However I can't do it as fast as I could in my 30s before crashing. It was the SACD remission status that changed. The CNS deficiency started giving central symptoms and a feeling fatigued that didn't have to do with lack of body capacity and increase of centrally caused pain. If I had kept that going for another year I might have had FMS all over again. However, I corrected things as soon as I was aware so I had a flare of SACD. The specific FMS/CFS symptoms have never come back unless you want to define these as demyelinating diseases.

I did find that it is important to avoid a group of things as they all trigger partial methylation block or methyltrap. So I avoid cyanide, glutathione and excessive nitrous oxide (and take prophylactic b12 injection before having it), whey, glutathione precursors, NAC, folic acid, folinic acid and too many vegetable folates, white flour products (folic acid) and milk products (different problem). I can eat butter and heavy cream but not half and half.

My feet and the based of my thumbs are very painful and are my most limiting things. Fifteen years ago my whole arm from shoulder to all fingers were too painful to use, all from neurological problems. So I'm about 95%, for my age. I can't do what I used to be able to with my hands. My limits now are set by aging joints, pain and stiffness as lots of old injuries come back to haunt me. I'm not sick and don't have FMS and CFS.

A very peculiar thing in the new breed of medical records, there is no way to say "recovered" for CFS/FMS or a whole lot of other things. A person looks at my medical record and my overall condition is based on my diagnoses when near death 11-13 years ago. And they have never recognized and still don't, MeCbl deficiency, AdoCbl deficiency, l-methylfolate deficiency and LCF deficiency. So data mining of these records will never be able to catch such things in anybody actually getting well. They are not designed with the expectation that people can get better. Correct and incorrect diagnoses are forever. Looking at the summary page one would expect a housebound inactive sick person not somebody who can hike 5 miles with a 2000 foot change in altitude each way.

Other than the neurological damage, most of my pain and limits is caused by the 1972 car wreck when a man ran a red light and t-boned me.

Have fun and be in good health.

@Freddd Thanks for going through that all again, my heart goes out to you. What a life!And what a recovery!It must be such a joy going for that 5 mile hike and being a "normal" person again.
You have such courage.
So you've been better for 8 years or so now? But still religiously stick to the protocal?
Can I ask where you get yr methylb to inject? I'm lucky to get 1 injection per 2 weeks here on script at my pharmacy. Doctor thinks injecting more than this waste of time As they do.