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CD57 higher now with methylation supplements

determined

Senior Member
Messages
307
Location
USA: Deep South
My doctor has been using the CD57 test which measures a subset of natural killer cells to monitor my progress for over a year now. The first time I had it measured it was in the 30s. Then, shortly after I began the mB12 and methylfolate, it increased to the 50s. I just had it measured recently (I've been on the supplements for about a year now, same tiny, tiny, diluted speck of a dose) and the CD57 was in the low 80s.

While I can't prove it, I believe that the supplements are responsible for the change.

I remain more chemically sensitive now than I was before I started. I wish I could figure that out....it seems to be what's holding me back right now. But I love my energy levels!

Thanks to all who have helped me get this far!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My doctor has been using the CD57 test which measures a subset of natural killer cells to monitor my progress for over a year now. The first time I had it measured it was in the 30s. Then, shortly after I began the mB12 and methylfolate, it increased to the 50s. I just had it measured recently (I've been on the supplements for about a year now, same tiny, tiny, diluted speck of a dose) and the CD57 was in the low 80s.

While I can't prove it, I believe that the supplements are responsible for the change.

I remain more chemically sensitive now than I was before I started. I wish I could figure that out....it seems to be what's holding me back right now. But I love my energy levels!

Thanks to all who have helped me get this far!

Hi Determined,

Glad to hear of improvment. The two main factors having to do with the hypersensitive chemical reactions appears to be the Metafolin and Mb12. It took me a couple of years of healing to really wind it up. I can't tell when exactly it stopped. It just sort of gradually faded away as I healed generally. It came back a little with the glutathione trial and was getting worse again when I headed it off with 8800mcg of Metafolin. I take 12,800mcg Metafolin now and have eliminated folic acid, folinic acid and limited veggies with folate to a degree. I try to have a balance becasue these are things I grow in my garden becasue I like them and other fresh produce.
 

Rosebud Dairy

Senior Member
Messages
167
chemical sensitivity

look up Dr Ritchie Shoemaker and Vasoactive Intestinal Polypeptide........

still not sure how this ties in with our B12 work here
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Thanks to you both....I'll look into metafolin and VIP....

If the methylation issue is in fact related to chemical sensitivity, then obviously there is something missing for me.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks to you both....I'll look into metafolin and VIP....

If the methylation issue is in fact related to chemical sensitivity, then obviously there is something missing for me.

Hi Determined,

My MCS simmered down over several years of mb12 plus cofactors. It started coming back with the glutathione/NAC induced severe folate deficiency.
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Fredd, did your chemical sensitivities get worse for a time when you started on the supplements? Early on in my illness, I was homebound due to MCS, but in the last several years they had subsided to the point that I could work part time. But since I've started mB12 and methylfolate, they are worse and it's been about a year.
 

redo

Senior Member
Messages
874
My doctor has been using the CD57 test which measures a subset of natural killer cells to monitor my progress for over a year now. The first time I had it measured it was in the 30s. Then, shortly after I began the mB12 and methylfolate, it increased to the 50s. I just had it measured recently (I've been on the supplements for about a year now, same tiny, tiny, diluted speck of a dose) and the CD57 was in the low 80s.

While I can't prove it, I believe that the supplements are responsible for the change.

I remain more chemically sensitive now than I was before I started. I wish I could figure that out....it seems to be what's holding me back right now. But I love my energy levels!

Thanks to all who have helped me get this far!

That's good news! I have improved with other treatments (mainly antibiotics), but I am still sick, still got low CD57, and I am waiting for some methylation protocol supplements I've ordered (Richvank's protocol).

Which supplements are you on? And how long where you on them before you got your first symptom improvement?
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Hi redo....

Here is a summary of how I approached the supplements, redo.

http://forums.phoenixrising.me/show...ERY-low-very-slow-results&p=173804#post173804

The only other supplements I take are turmeric, calcium d-glucarate, free aminos, and EPS Jarrodophilus. But these are things I've taken for years.

I have been on doxycycline for several years. What do your CD 57 values run, redo? Have they improved with antibiotics?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd, did your chemical sensitivities get worse for a time when you started on the supplements? Early on in my illness, I was homebound due to MCS, but in the last several years they had subsided to the point that I could work part time. But since I've started mB12 and methylfolate, they are worse and it's been about a year.

Hi Determined,

Mine never got worse with mb12, they had just stayed that way and were slowly getting worse year by year. That almost sounds like induced folate deficiency, maybe the b12 induced healing outrunning the methylfolate or something.
 

Rockt

Senior Member
Messages
292
I'm coming into this thread late, but I'm interested in this CD57 result. Mine tested low, but I don't know yet what the number is. Is CD57 not associated strictly with Lyme disease?
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Is CD57 associated only with lyme? Well, this is the question, isn't it. My doctor treats me as if I were a lyme patient. I have been on antibiotics for years now (very low doses though, since it's all i could handle). My doctor believes that a low CD 57 is diagnostic for lyme and that you can predict recovery/relapse by monitoring the levels.

Along with my "energy bump" that I've had with the methylfolate and mB12 (very, very small doses), my CD 57 has increased....more so than with other measures I've tried, so I feel that for me these supplements are very significant. The question is, can I get even better if I play around and find another form of B12 that may help me even more? Adenosylcobalamin? Hydroxocobalamin?

I understand the Source Naturals makes an adenosylcobalamin without added folic acid, so I may try a "homeopathic" dose of that.

Rockt, please let me know what your CD57 value is when you get it, okay? Thanks!
 

Rockt

Senior Member
Messages
292
Is CD57 associated only with lyme? Well, this is the question, isn't it. My doctor treats me as if I were a lyme patient. I have been on antibiotics for years now (very low doses though, since it's all i could handle). My doctor believes that a low CD 57 is diagnostic for lyme and that you can predict recovery/relapse by monitoring the levels.

Along with my "energy bump" that I've had with the methylfolate and mB12 (very, very small doses), my CD 57 has increased....more so than with other measures I've tried, so I feel that for me these supplements are very significant. The question is, can I get even better if I play around and find another form of B12 that may help me even more? Adenosylcobalamin? Hydroxocobalamin?

I understand the Source Naturals makes an adenosylcobalamin without added folic acid, so I may try a "homeopathic" dose of that.

Rockt, please let me know what your CD57 value is when you get it, okay? Thanks!


I knew I should have asked for the number after I left the doc's, but with this mega-foggy brain I'm not the quickest. I see the doc again in a month and will ask her then and report back, (btw, she said CD57 is only associated with Lyme - but like all docs, she could be wrong).

I've expereinced a meaningful gain in physical energy with Freddd's protocol, but the mental side of things is still really bad so I still feel like crap. But I wonder if my CD57 would have been even lower had I not supplemented with B12, etc.?

Determined, don't mean to put you on the spot, but how do you feel about your Lyme treatment? Were you ever able to tolerate higher doses of abx? Have they helped? Have they hurt you? (Long-term abx worry me because of the potential for damage to the gut). If you knew about the B12 thing then would you have embarked on the abx journey at all?

Freddd, how do you feel about this CD57 thing, Lyme, infections, etc.? Do you believe that the active B12 protocol will combat infections? I recall a post where you stated that at one point you tested positive for a lot of infections and thought that high dose vit c and olive leaf extract helped.
 

redo

Senior Member
Messages
874

determined

Senior Member
Messages
307
Location
USA: Deep South
Hmmm, Rockt. You ask good questions, which I will try to answer. Now that I really think back, I have been on doxycycline for almost ten years*. But, have I really? When I started, I was terrified of my possible reaction so I opened up a capsule, removed a speck of the powder and took that. It absolutely knocked me off my feet - I had a huge increase in chemical sensitivity for a day or so, then back to baseline. Over the years I slowly increased my dose (I used a balance in a research lab). And, over these years, I have become less chemically sensitive.

When I first started doxy, I couldn't even go to the lab to measure out my doses due to chemical exposures. Now, I am able to work part time in a very demanding, intellectually challenging job. The other thing that had to change in order to work outside the home was my level of weakness and fatigue. I'm not sure that doxy ever touched that, to be honest. But, undergoing chemotherapy for cancer DID have a dramatic effect. In a few days I was able to go for walks (first time in YEARS).

I am fairly comfortable with my fatigue component of this disease now.....but the chemical sensitivity is what is preventing me from moving forward. I think the methylation supplements have had a big effect, but for some reason, seem to have made me more chemically sensitive.

Regarding concerns of damage to the gut, I should also say that when I was extremely chemically sensitive, I could only eat a few foods as well, so lots of food sensitivities too. THese have improved too; I suspect that doxy has been the help here. Now I can get away with eating almost anything, at least for a short time. Before I wasn't even tempted to cheat since the reactions were so intense.

My belief is that there is a genetic component for all this....I had a relative who had severe MCS too, and I don't think it's because both of us had lyme. Doxycycline also modulates the immune system and I think that this is why it's helpful. I could be wrong, and I guess shortly I may find out. My doctor wants to take me off doxy and try another antibiotic. I dread this. I want to keep my job. I worry that if my chemical sensitivities get stirred up even more I won't even be able to do part time.

I am still not at the therapeutic dose of doxy, but the way. I'm about halfway there. I can't even imagine the level of hell that may have ensued had I started out at the full dose. *cringe*

I hope this helps.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I knew I should have asked for the number after I left the doc's, but with this mega-foggy brain I'm not the quickest. I see the doc again in a month and will ask her then and report back, (btw, she said CD57 is only associated with Lyme - but like all docs, she could be wrong).

I've expereinced a meaningful gain in physical energy with Freddd's protocol, but the mental side of things is still really bad so I still feel like crap. But I wonder if my CD57 would have been even lower had I not supplemented with B12, etc.?

Determined, don't mean to put you on the spot, but how do you feel about your Lyme treatment? Were you ever able to tolerate higher doses of abx? Have they helped? Have they hurt you? (Long-term abx worry me because of the potential for damage to the gut). If you knew about the B12 thing then would you have embarked on the abx journey at all?

Freddd, how do you feel about this CD57 thing, Lyme, infections, etc.? Do you believe that the active B12 protocol will combat infections? I recall a post where you stated that at one point you tested positive for a lot of infections and thought that high dose vit c and olive leaf extract helped.

Hi Rockt,

Freddd, how do you feel about this CD57 thing, Lyme, infections, etc.? Do you believe that the active B12 protocol will combat infections? I recall a post where you stated that at one point you tested positive for a lot of infections and thought that high dose vit c and olive leaf extract helped.

About CD57, I don't know. I do know that low mb12/folate trash the immune system and is being considered in the effects of HIV. I had permanent;y swolen glands by the time I was 18. I had 6 streps a year. When I was 23 I had a lower UTI infection that wqas drug resistant and lasted more than a year. I started taking 6g of C per day. The UTI was gone in a week. I stopped having streps. When I increased to 16 grams daily the "permanently" swolen glnads went to normal. Following that I had bad colds that would go to my lungs for months, bronchitis for months and months, infected folicles , weird infected rashes, sore throats forever. I went into crash that lasted 17 years with a "misc entero virus" was what the doctor called it. Many others including my woife had it too. For years I suspected lyme on general principles as an also. We were exposed to ticks frequently out in sagebrush country. As long as I took the C I didn't have streps but a whole lot of mysterious stuff.

After I started the mb12 had a whole lot of extra infected folicles and then one big episode and they all went away. About that time I also did the olive leaf extract and it seemed to help both of us. I have had one minor sore throat the year I started the mb12, two very minor flu episdes this year and last, at least that is what they seemed to be, lasted 2 weeks and all, symnptoms matched but very minor. Other than that these past 8 years have been healthiest of my life. I cut the 16 grams down to 6 for some years and went back up to 8 last week as the glands went swolen again, slowly over the years for unknown reasons.

However, the hyper-reactive skin, inflammation, allergic, asthma, reflexes, sound, vision, touch (mostly) and mot things have returned to normal. My immune system appears to be working excellently. I don't know if CD57 is affected. My doc gives me his twice a year checkover and does his due dilligence in overseeing my medications that I still take, is amazed that I look 15 years younger now than when I started with him 9 years ago, and am far healthier. I saw him only once before I got the b12. He saw be then after almost 3 weeks and everybody in the office from front desk to nurse to doctor himself to insurance clerk mentioned how different I looked in only 3 weeks. I didn't drag myself in. I walked briskly in and stood up straight. My raspy voice had smoothed out. The stuff that happened started fast. Right after that, over the next few months, it's like my body was fighting every bacterium and virus I had. I had skin eruptions, from infected folicles and pimples to areas of skin that separated from the new smooth pink unpitted unlumped skin underneath and sloughed off, sort of like a sunburn. The old damaged skin came off in many areas.
 

Rockt

Senior Member
Messages
292
Thanks for the thoughtful explanation, Freddd.

Can you elaborate just a bit on the vit. C therapy - is this something that you think contributed to your recovery, before the B12/MF, etc.? What I mean is, would it be a worthwhile step if infection is suspected? Also, what kind of C did you take and how did you work up to that high a dose?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for the thoughtful explanation, Freddd.

Can you elaborate just a bit on the vit. C therapy - is this something that you think contributed to your recovery, before the B12/MF, etc.? What I mean is, would it be a worthwhile step if infection is suspected? Also, what kind of C did you take and how did you work up to that high a dose?

Hi Rockt,

I started Vit C just after I got married. I had a year+ UTI that was resitant to antibiotics, sulfas and who knows what. The doc identified the exact bacteria but it was resistant. He suggested cranberry juice becasue it acidifies the urine. At that time The cranberry juice was RARE and expensive. Drinking the quart a day he suggested cost more than I could afford. I did some reading. Linus Pauling was big at the time with his Vit C theory. Some critics said "All you get is expensive acidic urine". That was a bingo for me. Pennies a day would buy plenty of vtamin C to acidify my urine more than cranberry juice which I did try and it didn't work. I calculated how much C and started at 1gr twice a day and over a couple of weeks worked up to 3 grams twice a day. By then the UTI was gone. I stopped and it came back in 4 days. I restarted and it subsided and I just kept increasing the dose to 8 grams twice a day,. I stopped getting streps by 4-6 grams. Basically I was much healthier with the Vit C but it wasn't perfect. Seemed to work for bacteria but not viruses.
 

Rockt

Senior Member
Messages
292
Thanks Freddd - and thanks Determined for your input as well.

This vit c info is intriguing. Is it possible it lightened your infectious burden and made it easier for B12 et.al to be more effective?

I don't really see a downside to experimenting with increased vit. c levels. The only thing I'm wondering about is what kind/brand to use at that level. That's a lot of pills to take and are you getting full absorption? I've tried ascorbic acid powder that you mix with water but it kills my teeth. Any suggestions?
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Thanks Freddd - and thanks Determined for your input as well.

This vit c info is intriguing. Is it possible it lightened your infectious burden and made it easier for B12 et.al to be more effective?

I don't really see a downside to experimenting with increased vit. c levels. The only thing I'm wondering about is what kind/brand to use at that level. That's a lot of pills to take and are you getting full absorption? I've tried ascorbic acid powder that you mix with water but it kills my teeth. Any suggestions?

See this thread about vit C.

http://forums.phoenixrising.me/showthread.php?14728-How-much-Vitamin-C-do-you-take

Rich van K thinks that taking less than bowel tolerance may be unhelpful if glutathione is depleted.

I've come to realise that as soon as you conclude that something can't be bad, you soon find that someone thinks it might be!
 

Rockt

Senior Member
Messages
292
See this thread about vit C.

http://forums.phoenixrising.me/showthread.php?14728-How-much-Vitamin-C-do-you-take

Rich van K thinks that taking less than bowel tolerance may be unhelpful if glutathione is depleted.

I've come to realise that as soon as you conclude that something can't be bad, you soon find that someone thinks it might be!



Rich's comment from the above link:

I just want to mention that vitamin C is part of the antioxidant network, as defined by Prof. Lester Packer in his book "The Antioxidant Miracle" (a hokey title, but a good book). The network consists of glutathione, vitamins C and E, alpha lipoic acid, and coenzyme Q10. The defining feature of this network is that these antioxidants regenerate each other via certain relationships when they become oxidized. In particular, vitamin C is normally recycled by glutathione. Glutathione is usually found to be depleted in ME/CFS. If vitamin C is supplemented under this condition, the ratio of reduced to oxidized glutathione will be lowered even further. Vitamin C can pick up some of the load of oxidative stress from glutathione, and thus give some benefit, but it can't do all the many jobs that glutathione normally does. So I think it is better to raise glutathione by lifting the partial methylation cycle block than to try to substitute it with vitamin C.

The late Dr. Robert Cathcart found that if vitamin C is taken at dosages up to bowel tolerance every day (which he did himself for many years, because it was the only thing that he found would work for him) the relationship between glutathione and vitamin C in the antioxidant network can be reversed. That is, vitamin C will regenerate glutathione.

But at dosages short of those near bowel tolerance, taking vitamin C in the presence of glutathione depletion probably worsens this situation. Oxidative stress may be lowered this way, but the buildup of toxins, the immune dysfunction, the methylation deficit, the lack of folates to make new DNA and RNA, etc., will likely not be corrected.

Best regards,

Rich