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am I on the right track? increased headaches, body itch, nausea and fatigue

suzanne

Senior Member
Messages
178
I am only at day 17 and not sure if the ncreased symptoms mean I am on track- or if something is not quite right. I have titrated up to ( these were in place before i strated this protocol)- I have benefited from introducing celery seed capsules and tea as a way to significantly increase my potassium naturally ( potassium made my stomach burn)- my muscle cramps and twitching seem to have gone. I am thinking of stopping the SAM-e for a while- until the methylation blocks seem to be lifting- this thought was sparked by something that Rich said that SAM-e may cause headpain if taken before methylation is functional.

At oone level i feel awful and at another level I can see some improvement-the worsening of symptoms is increased headpain, nausea, worsening of insomnia, incredibly tired, and increased body itch ( had this before but it is now worse).

I have tried to increase the methyl b12 but it made me almost bed bound and non functional. So, I am staying steady on the 750mg dose which i have been on for the past 5 days.

I have noticed two things improve improve (so I guess this is all working?) - my almost daily migraines have reduced- i have not had one for 8 days. My head just hurts and I have nausea but it is not like my old migraines. And, my totth pain that I got on initial start up is subsiding some.

My question is- is this normal start up and do I just try and ride this out for a few more weeks? I have no idea if what i am doing is the right approach- i have just read the other posts and follwed suit, and tried to listen to my body about how quickly I can go up on the methyl b12.

If anyone has any comments I would welcome them- this is like being in the dark and my dr is supportive but has no idea-
Suzanne
 
Messages
94
Location
California
Hi Suzanne,
Normal is hard to describe when each of us has so many different manifestations of start up effects. I started much lower and slower than you, but I did get terrible insomnia, wired brain, fatigue, intestinal disturbances, muscles cramps and twitching, and body itching (which I attribute to increased histamine....meaning I still haven't broken through the methylation block). I didn't get headaches. If I used higher doses as most people do , I would have added terrible liver congestion to my symptoms. I hope it helps to see what a fellow sojourner is experiencing. PS The worst symptoms abated in about 3-4 weeks.
 

richvank

Senior Member
Messages
2,732
I am only at day 17 and not sure if the ncreased symptoms mean I am on track- or if something is not quite right. I have titrated up to ( these were in place before i strated this protocol)- I have benefited from introducing celery seed capsules and tea as a way to significantly increase my potassium naturally ( potassium made my stomach burn)- my muscle cramps and twitching seem to have gone. I am thinking of stopping the SAM-e for a while- until the methylation blocks seem to be lifting- this thought was sparked by something that Rich said that SAM-e may cause headpain if taken before methylation is functional.

At oone level i feel awful and at another level I can see some improvement-the worsening of symptoms is increased headpain, nausea, worsening of insomnia, incredibly tired, and increased body itch ( had this before but it is now worse).

I have tried to increase the methyl b12 but it made me almost bed bound and non functional. So, I am staying steady on the 750mg dose which i have been on for the past 5 days.

I have noticed two things improve improve (so I guess this is all working?) - my almost daily migraines have reduced- i have not had one for 8 days. My head just hurts and I have nausea but it is not like my old migraines. And, my totth pain that I got on initial start up is subsiding some.

My question is- is this normal start up and do I just try and ride this out for a few more weeks? I have no idea if what i am doing is the right approach- i have just read the other posts and follwed suit, and tried to listen to my body about how quickly I can go up on the methyl b12.

If anyone has any comments I would welcome them- this is like being in the dark and my dr is supportive but has no idea-
Suzanne

Hi, Suzanne.

Here's a quotation from the results section of the poster paper Dr. Nathan and I wrote about our clinical trial with the simplified treatment approach. It may be helpful to you to know how the women in that study responded initially:

"Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.

"Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks. Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%; increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%. Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.

"For those who experienced improvement, the time to self-reported improvement on the protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to as long as 8 weeks before improvement was experienced."

Best regards,

Rich
 

suzanne

Senior Member
Messages
178
Thanks Therron and Rich,
It just helps to have some context and better information about how long these symptoms might last- it feels just like my isual detox reactions, so i guess something is starting up. I have all the cofactors in place- so i think that is covered and the potassiu issues of cramping seem to have disappeared with the use of the celery seed ( I know that sounds weird but I researched that it is high in potassium and it has helped). As to the methyl B12 it is just tolerable at 750 mg in 3 divided doses of 250 mg a day. The headpain, nausea and itching is really annoying bt oddly, I feel weller at another level- more energy and no migraines now for nearly 12 days which is a REAL BREAKTHROUGH..very encouraging to just keep going at this dose and I hope that in 2-3 weeks the worst of these symptoms will dissipate. Fngers crossed. By the way, I have a son with an autism spectrum disorder- aspergers syndrome ( he is now 20 and doing quite well- at university- but I just wonder wheterh he wold do even better on this protocol ( genetics, eh?)
 

mellster

Marco
Messages
805
Location
San Francisco
For me the worst thing is the nausea, esp. if I took methyl b12 and then eat a larger meal (e.g lunch), and minor nervous system issues. I agree that it helps a lot of other symptoms and provides more energy but I am wondering whether it is time to cut down a bit.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I am only at day 17 and not sure if the ncreased symptoms mean I am on track- or if something is not quite right. I have titrated up to ( these were in place before i strated this protocol)- I have benefited from introducing celery seed capsules and tea as a way to significantly increase my potassium naturally ( potassium made my stomach burn)- my muscle cramps and twitching seem to have gone. I am thinking of stopping the SAM-e for a while- until the methylation blocks seem to be lifting- this thought was sparked by something that Rich said that SAM-e may cause headpain if taken before methylation is functional.

At oone level i feel awful and at another level I can see some improvement-the worsening of symptoms is increased headpain, nausea, worsening of insomnia, incredibly tired, and increased body itch ( had this before but it is now worse).

I have tried to increase the methyl b12 but it made me almost bed bound and non functional. So, I am staying steady on the 750mg dose which i have been on for the past 5 days.

I have noticed two things improve improve (so I guess this is all working?) - my almost daily migraines have reduced- i have not had one for 8 days. My head just hurts and I have nausea but it is not like my old migraines. And, my totth pain that I got on initial start up is subsiding some.

My question is- is this normal start up and do I just try and ride this out for a few more weeks? I have no idea if what i am doing is the right approach- i have just read the other posts and follwed suit, and tried to listen to my body about how quickly I can go up on the methyl b12.

If anyone has any comments I would welcome them- this is like being in the dark and my dr is supportive but has no idea-
Suzanne

Hi Suzzanne,

I would be inclined to suspect paradoxical folate deficiency or glutathione/NAC induced folate deficiency with those symptoms. Without knowing more about what you are taking it is difficult to say. I'll be back in a couple of weeks and will delve into it more then if you haven't solved it by then.
 

suzanne

Senior Member
Messages
178
Hi Fredd,
Thanks so much for your reply. I understand that it may be weeks before you can get back to me- that would be great when you are ready and able.

I am going out of my mind with the body itching- I had body itch before I started this protocol but now, at the 3 week mark it is really extreme. I have hedaches, fatigue and nausea that has all got worse as well, but the itch is the worst symptom for me to manage- I just cannot sleep or function. For most of the 3 weeks i have been on a steady dose of m B12 250mg, 3 times a day. i titrated up to the 800 mg of metafolin, which I take in a divided dose of 400mg am and 400 mg pm. I had to titrate up to this dose as when I took the 800 mg first off, I had a day of extreme nausea and headache- so i increased slowly. Perhpas it is time to increase the metafolin further- i will give this a try.

I have not taken NAC or glutahtione to speak of- many years ago I tried NAC once and i made me feel very unwell so i stpped- glutathione also makes me unwell so i only stayed on a tiny dose for about 3 days quite a while back. So, I have not had extensive periods on doses of NaC or glutathione.

BTW, I recently added in celery seed extract capsules to deal with my potassium issues- that seems to be working - no more muscle twitches that were getting quite bad. the dr has measured my potassium and it is 3.8 mmol/L...it has over time hovered at about this level or up to 4.3, so maybe I need to keep an eye on this, too.

As to what i am taking at the moment:
m b12 jarrows 750mg day
metafolin 800mg day
magnesium citrate 800 mg
vit E 400iu
vitmin A M,W,F 25,000 iu
sunflower lecithin 1,800 mg, 2 day
zinc picolinate 50 mg
selenium 200mcg
celery seed extrct tablets for potassium ( cant tolerate potassium due to GI problems)
melatonin
magnesium citrate 800mg day
calcium 500mg

I will try to increase the metafolin and see what happens over the next week or so, and i will hear from you ( that would be really appreciated as I am lost!) when you are able.

many thanks
Suzanne
 

suzanne

Senior Member
Messages
178
Oops, sorry fedd, and any others that may be inclined to offer any thoughts on my titration difficulties.

I meant to add, that as an experiment I stopped the m b 12 for 1 and half days ( but kept taking the metafolin). I thought that some of my sytmptoms may feel less intense- there was no change. I thought this bit of information may be hepful?

suzanne
 

richvank

Senior Member
Messages
2,732
Hi Fredd,
Thanks so much for your reply. I understand that it may be weeks before you can get back to me- that would be great when you are ready and able.

I am going out of my mind with the body itching- I had body itch before I started this protocol but now, at the 3 week mark it is really extreme. I have hedaches, fatigue and nausea that has all got worse as well, but the itch is the worst symptom for me to manage- I just cannot sleep or function. For most of the 3 weeks i have been on a steady dose of m B12 250mg, 3 times a day. i titrated up to the 800 mg of metafolin, which I take in a divided dose of 400mg am and 400 mg pm. I had to titrate up to this dose as when I took the 800 mg first off, I had a day of extreme nausea and headache- so i increased slowly. Perhpas it is time to increase the metafolin further- i will give this a try.

I have not taken NAC or glutahtione to speak of- many years ago I tried NAC once and i made me feel very unwell so i stpped- glutathione also makes me unwell so i only stayed on a tiny dose for about 3 days quite a while back. So, I have not had extensive periods on doses of NaC or glutathione.

BTW, I recently added in celery seed extract capsules to deal with my potassium issues- that seems to be working - no more muscle twitches that were getting quite bad. the dr has measured my potassium and it is 3.8 mmol/L...it has over time hovered at about this level or up to 4.3, so maybe I need to keep an eye on this, too.

As to what i am taking at the moment:
m b12 jarrows 750mg day
metafolin 800mg day
magnesium citrate 800 mg
vit E 400iu
vitmin A M,W,F 25,000 iu
sunflower lecithin 1,800 mg, 2 day
zinc picolinate 50 mg
selenium 200mcg
celery seed extrct tablets for potassium ( cant tolerate potassium due to GI problems)
melatonin
magnesium citrate 800mg day
calcium 500mg

I will try to increase the metafolin and see what happens over the next week or so, and i will hear from you ( that would be really appreciated as I am lost!) when you are able.

many thanks
Suzanne

Hi, Suzanne.

The other B-complex vitamins (beside folate and B12) are also important for the methylation cycle and related biochemical pathways. I think some others on the forums have looked into B-complex supplements that don't include folic acid. I can't recall what they came up with. Maybe someone else will comment. I'm not familiar with them, since the simplified protocol I've suggested has the B-complex vitamins included in the Yasko multi. But on Freddd's protocol, I think it's important to include B-complex.

Best regards,

Rich
 

Adster

Senior Member
Messages
600
Location
Australia
Thorne Basic B Complex has folinic and methylfolate, and no folic acid. Douglas Labs also make one without folic acid.
 

suzanne

Senior Member
Messages
178
Thanks Rich and Adster...for the information on needing to add a b complex and the right form to take. I have been waiting 2 weeks for i herb to have the Douglas labs in stock- but it seems to be slow in getting it in stock. I am not keen to take the Thorne B complex as it has a mix of folate- not just methyl b12 and i have 2 gene mutations on this SNP, so I think it might be best to stay with methyl folate only, like the Douglas labs. I am in Australia, so if I herb dont have the Duglas labs soon i will have to get it from elsehwhere. if anyone from Australia knows where I can order this on line from the US- other than I herb, maybe you could let me know?

Just as an update on my protocol (only 31/2 weeks in so I know it i early days). I am just trying to juggle things a bit to try and minimise the worst symptoms, if that is even possible. I stopped the methyl b12 for 2 days to try and stop the itching- it made no difference? I ended up having my first migraine in 2 weeks when I stopped the m b12 for the 2 days ( the daily migraines had stopped after 10 days on the protocol). So I am back on the 750mg a day, and am now increasing the methyl folate- like fredd suggested- to see if that might help the itch and the headaches, nausea, fatigue and insomnia. I tried to increase the methyl folate from 800 to 1200 today but got really bad nausea and hedpain, so tomorrow I am going to take 1000 in divided doses. Like others have sugested the increased itch may be due to high histamine ( I know that my level was high before i started) but taking an antihistamine doesnt really help me...so perhaps the itch is just the start up of the immune system and dealing with pathogens, including candida- who knows, but i think that rich has suggested somewhere that the increased toxic load may be the reason why these symptoms are worse to start with. I am just trying to get through this first 6-8 weeks ( nearly half way) and I may just have to grit my teeth given that stopping the methyl b12 doesnt seem to help....perhaps the 2 days of stopping was not long enough? I think i is best that i grit my teeth and just try and push through this bit.....Now I think I am prattling. Forgive, foggy head problems.
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK

richvank

Senior Member
Messages
2,732
I stopped the methyl b12 for 2 days to try and stop the itching- it made no difference? I ended up having my first migraine in 2 weeks when I stopped the m b12 for the 2 days ( the daily migraines had stopped after 10 days on the protocol). So I am back on the 750mg a day, and am now increasing the methyl folate- like fredd suggested- to see if that might help the itch and the headaches, nausea, fatigue and insomnia. I tried to increase the methyl folate from 800 to 1200 today but got really bad nausea and hedpain, so tomorrow I am going to take 1000 in divided doses. Like others have sugested the increased itch may be due to high histamine ( I know that my level was high before i started) but taking an antihistamine doesnt really help me...so perhaps the itch is just the start up of the immune system and dealing with pathogens, including candida- who knows, but i think that rich has suggested somewhere that the increased toxic load may be the reason why these symptoms are worse to start with. I am just trying to get through this first 6-8 weeks ( nearly half way) and I may just have to grit my teeth given that stopping the methyl b12 doesnt seem to help....perhaps the 2 days of stopping was not long enough? I think i is best that i grit my teeth and just try and push through this bit.....Now I think I am prattling. Forgive, foggy head problems.

Hi, Suzanne.

If the itching is indeed due to high histamine, B6 and B2 might help. This combination is needed to make P5P, the active form of B6. This is needed by diamine oxidase, the enzyme that breaks down histamine that is outside the cells. This is the histamine that causes skin-related symptoms.

Best regards,

Rich
 

suzanne

Senior Member
Messages
178
Hi Rich
I really appreciate the efforts that you go to in considering our symtpoms and difficulties and providing guidance and lerned input.

My dr suggested that I take B6 200mg, P5P50mg, cal- mag and SAM-e titrate up to 600 mg- that was about 2 months ago- I only take 100mg of B6 but these supplements have made no difference to my itchy skin so maybe that is not the problem. However, I will add in some b2- i have 250mg sustained release tablets at home. I know that I have candida issues ( poo test positive- and I also get increased itching when I take supplements or medication to deal with candida). But , I cannot seem to get rid of the candida and the itch continues even after months of treatment. So,....I am hoping that this methyation cycle protocol will eventually lessen or eliminate the itch. I have decided that i cannot do this start up phase of the protocol and a candida treatment- it would be too much detox for my body to handle, so i will just try and get through this next 4-6 weeks and see how I feel at the point and then reassess the itch.

Interestingly, I have been on an increased dose of folate for 2 days now and the itch is as bad as before, so perhaps this is a die off of pathogens/ candida and my body may not be handling the initial increase in the toxic load? There is really no answer to this other than to push on and see what develops in the next while. Meanwhile the itch, headpain and morning fatigue is pretty bad. I am assuming that it is possible that these are start up symptoms of the methylation cycle and will just try to push on- at least the slowing up of the migraines is a good sign at this 3 week point.

tahnks muchly, Suzanne