Rest periods and can CFS people get really well?

[Kimsie]

I have been trying (three weeks in) pacing my activity according to the 20 mn activity/15 mn rest pattern. For the time beeing, I can't draw conclusions becquse so many things interracted (reaction to meds). But I am still into this and intend to apply this as much as I can.

How do I know I am under methylating or not ?
I take only little supplement with methyl groups (don't tolerate SamE) like methylB12 (1 mg/day) because otherwise I am wired and feel anxiety. Am allergic to most of the antihystamin stuff, have plenty of other food intolerances (gluten-diary-sulfite etc) and MCS, but no real seasonal allergies.

According to the information from Walsh's book, I would say you are overmethylated. How does niacinamide make you feel?

As I have said a few times already, whenever I increase B3 or reduce folate, I run into problems. I do have seasonal allergies. So perhaps I am generally undermethylated.

Almost universally it seems that PWMEs do not tolerate B3 very well, and generally do well with folate, and this is one thing that makes me a bit skeptical about @Kimsie's NAD hypothesis.

It does sound like you might be undermethylated. I am revising the NAD part of my hypothesis because I am beginning to think that the NAD problem isn't because of not having enough niacinamide, but with having an increased need for de novo purine synthesis. Niacinamide helps overmethylated people for a reason not related to NAD synthesis.

 

[Hanna]

According to the information from Walsh's book, I would say you are overmethylated. How does niacinamide make you feel?

.

I have been taking an AOR Bcomplex that gives only 118 mg Niacin per capsule... not much. And felt good with it.
But back in 2010-2011 when I used to follow Dr Myhill's recommendations, it included 3X 500 mg niacinamide a day. I didn't improve on her protocole, but don't recall any problems with niacinamide either.

 

[Kimsie]

I have been taking an AOR Bcomplex that gives only 118 mg Niacin per capsule... not much. And felt good with it.
But back in 2010-2011 when I used to follow Dr Myhill's recommendations, it included 3X 500 mg niacinamide a day. I didn't improve on her protocole, but don't recall any problems with niacinamide either.

1500 mg a day might not be enough to make a difference if you are overmethylated. Were you taking folate, too?

As I understand it a blood histamine test is a pretty sure marker for over and undermethylation, with undermethylation pointing to high histamine, but I don't think very many doctors use it. Treatment with niacinamide doesn't change the histamine levels, but it affects the symptoms.

Also, I should say that I don't know yet whether the main symptoms in CFS are caused by the over or under methylation of histones, because Dr. Walsh's book is related to other illnesses. This is an unknown factor at this time, as far as I know.

 

[Hanna]

Thanks Kimsie. At the beginning I was only taking the folate included into the B-complex and I am quite sure it wasn't methylfolate. But after a while (was it one year later? sorry don't remember), I introduced the metafolin along with the active B12, according to Freddd's protocole (and the other stuff), also without results.

But I was much more wired on Freddd's protocole than on Dr Myhill's, perhaps a little bit more energtic too...

 

[Gingergrrl]

@Kimsie even though this thread is way above my knowledge level, I try to read it anyway and have a question. I tested as high histamine on a blood test last month even though I have no symptoms of mast cell issues (no rash, hives, swelling, etc.) and my doctor said there are other cytokines related to histamine and inflammation. Can you explain this?

Also, I had a horrific over methylation episode when I tried methyl b12 & folate last year and don't tolerate those supplements at all. I got extreme agitation, tachycardia, confusion, and had to take the niacin to reduce the reaction which lasted for days. Does this match up with your theories or am I am outlier? I do not tolerate meds well!

 

[Kimsie]

@Kimsie even though this thread is way above my knowledge level, I try to read it anyway and have a question. I tested as high histamine on a blood test last month even though I have no symptoms of mast cell issues (no rash, hives, swelling, etc.) and my doctor said there are other cytokines related to histamine and inflammation. Can you explain this?

Also, I had a horrific over methylation episode when I tried methyl b12 & folate last year and don't tolerate those supplements at all. I got extreme agitation, tachycardia, confusion, and had to take the niacin to reduce the reaction which lasted for days. Does this match up with your theories or am I am outlier? I do not tolerate meds well!

High histamine is supposed to corrolate with undermethylation. When a person has depleted levels of vitamins their body makes larger amounts of the enzymes which use the vitamins to try to compensate. Then when the person takes the vitamins as supplements, they make too much of the things in those pathways until the body can adjust the enzymes. This can cause distressing symptoms.

People with ME/CFS are usually especially depleted in many vitamins and they are very sensitive to supplements. This is why you have to start so small and build up. Another factor is that if you take one thing you are low on and not another that is used in the pathways, that can drain the one that you don't take even more. Niacin is very important for degrading adrenaline (so is magnesium) and at least part of the reaction you had probably relates to having too much adrenaline.

You may very well be undermethylated in the low SAMe sense, from what you say. What might be best is to start with a very small dose of a good B complex and if you don't have too much of a reaction to it, slowly raise the dose each time you become accustomed to it. If you react too badly you could try very small doses of individual B vitamins to see which ones you react to, and what the reactions are before decided how to proceed.

 

[Gingergrrl]

What might be best is to start with a very small dose of a good B complex and if you don't have too much of a reaction to it, slowly raise the dose each time you become accustomed to it. If you react too badly you could try very small doses of individual B vitamins to see which ones you react to, and what the reactions are before decided how to proceed.

@Kimsie I currently take a B Complex once a day called "B Minus" which has all the B vitamins minus B-12 and Folate (which I did not tolerate as I explained.) I tolerate this complex fine with no issues. In your opinion, how small of a dose of B12 and Folate would I add? And I am not taking this as medical advice and only want to compare it to all the other recommendations and ratios from other threads. I am starting a new med tomorrow so am not adding anything new into the mix but just want the info for future reference. Thanks again!

 

[adreno]

In your opinion, how small of a dose of B12 and Folate would I add?

I think most people here can tolerate 200mcg mfolate and 250mcg mb12, but no dose is too small for starting, I guess it becomes more a problem of practicality in dividing the supps.

If you are extremely sensitive you might try folinic acid and hydroxocobalamin instead, as they are less stimulating.

 

[Kimsie]

@Kimsie I currently take a B Complex once a day called "B Minus" which has all the B vitamins minus B-12 and Folate (which I did not tolerate as I explained.) I tolerate this complex fine with no issues. In your opinion, how small of a dose of B12 and Folate would I add? And I am not taking this as medical advice and only want to compare it to all the other recommendations and ratios from other threads. I am starting a new med tomorrow so am not adding anything new into the mix but just want the info for future reference. Thanks again!

None of us are sensitive so I am not really a good person to ask. I think adreno's answer is good. After you find that you are tolerating that dose you can raise it a little. You may not want to go too high, especially on the folate, but hydoxocobalamin can help get rid of peroxynitrite so you might gradually go higher on that one if you can tolerate it.

 

[Mij]

My sister is hypothyroid and can not tolerate mfolate or methylB12 but does fine with folinic acid and hydroxyB12.

 

[Gingergrrl]

I think most people here can tolerate 200mcg mfolate and 250mcg mb12, but no dose is too small for starting, I guess it becomes more a problem of practicality in dividing the supps.

If you are extremely sensitive you might try folinic acid and hydroxocobalamin instead, as they are less stimulating.

@adreno Thank you for this and I think you are right, if I ever do try methylation again, I will start at a very low dose like this and I may try hydroxy-B instead of methyl-B (which I never tried.) Thank you to @Kimsie as well for all the great info.

 

[sueami]

Dammit. I was going to post an update yesterday, 33 days after my crash within the crash, that I was finally starting to feel better and have energy that felt sort of close to fatigued normal. Then I tried to do a couple short housekeeping activities (8 minutes of vacuuming a half flight of stairs sitting down, and a few hours earlier, sweeping snow off a half flight of deck stairs). Stupid, I know. I can't seem to be in charge of my brain, it seems, despite all the mindfulness meditation I'm doing. I'm in a bad PEM crash now, trying to rest my way out of it and taking small amounts of the NAD recipe supps, which I'd stopped four or five days ago because I thought I might be having hypogyclemia (it was at least partly anxiety attacks, blood sugar readings were normal. though my doc says it's the rate at which blood sugar drops that triggers hypogylemia, not the actual number.)

I'm wondering if getting a heart rate monitor would help remind me not to raise my activity levels. What do you think @Kimsie? Would setting a heart rate target of 85 or 90 bpm keep me from crashing my mitochondria?

 

[Gingergrrl]

@sueami I have a heart rate wrist watch which is lightweight and easy to use. I don't know what I would do without it and recommend it highly. Although the band broke at one point, the company replaced it for free and it has lasted for two years.

I literally cannot imagine trying to vacuum stairs or sweep snow! That seems about as strenuous and labor intensive as you can get if your goal is to rest. My heart rate went over 110 when I was just standing in the kitchen this morning trying to prepare my own very easy breakfast. I know you may not have as bad autonomic issues as me (or you may- I actually do not know your history) but in either case, you did very difficult activities if you are trying to rest!

Please take it easy and be careful!

 

[sueami]

Thanks, @Gingergrrl. I know it was stupid. I'm having the hardest time accepting that I'm not the person I was six weeks ago and I can do none of the things I used to do such a short time ago. What brand wrist watch do you have? Does it do an accurate job of reading pulse at the wrist? I was thinking of getting a chestband one just to be sure of accuracy but I also would rather not wear that all day long.

 

[Debbie23]

I'm curious about the brand of HR monitor too. I asked on another thread and got very good advice about the mio ones, which I'm looking very closely at. The thing that puts me off that is that you have to set it going in an exercise sessions to actively monitor heart rate with the warnings in place, if I'm understanding correctly, entirely possible I'm not! But I can see myself when very poorly and suffering bad cognitive symptoms forgetting to set it going even if I put it on, and forgetting to look at it now and again if the warnings are off, and that's obviously the times when I need to be more careful even than usual. So I'm Still considering one of the new fitbits, as my understanding is they are going all the time even if you aren't in 'exercise mode'. I've seen them said you shouldn't use them in the shower, but also seen people say they have as say it's fine. So I'm still researching which is right for me. So I'm leaning towards one of the new fitbits and hoping the waterproof resistance is good enough for the shower, but I'm curious to compare as many peoples experience before I commit.

 

[Gingergrrl]

Thanks, @Gingergrrl. I know it was stupid. I'm having the hardest time accepting that I'm not the person I was six weeks ago and I can do none of the things I used to do such a short time ago. What brand wrist watch do you have? Does it do an accurate job of reading pulse at the wrist? I was thinking of getting a chestband one just to be sure of accuracy but I also would rather not wear that all day long.

@sueami Don't beat yourself up about it and this is the only illness I know where we are punished so harshly just for trying! I am very lucky that we have no stairs inside our unit and no snow here to deal with.

As far as my heart rate watch it is by "Sportline" and my husband got it for me two years ago (Jan 2013) when I first started having tachycardia which was the first symptom of this entire thing ten months post severe mono. I am not actually sure of the details of the watch and don't have the original packaging (and not sure if exact same model is still sold two years later?) Sorry that is vague and not so helpful!

It is the woman's version of a watch that he had for biking/exercise. It seems to be very accurate IMO and it comes with a chestband but I do not wear that part. I guess if you did, it would be even more accurate but it was too uncomfortable and not something I could wear all the time.

I'm curious about the brand of HR monitor too. I asked on another thread and got very good advice about the mio ones, which I'm looking very closely at.

@Debbie23 Mine is not monitor per se, just a watch, so if you like the one you looked at, I would go with that.

Still considering one of the new fitbits, as my understanding is they are going all the time even if you aren't in 'exercise mode'. I've seen them said you shouldn't use them in the shower, but also seen people say they have as say it's fine. So I'm still researching which is right for me. So I'm leaning towards one of the new fitbits and hoping the waterproof resistance is good enough for the shower, but I'm curious to compare as many peoples experience before I commit.

I have heard of fitbit but not really familiar with it so can't comment. My heart rate watch is waterproof so you can wear it in the shower although I don't. If I can find a link, I will post it.

ETA: Here is the website although from glancing at it, I am not quite sure which version I have!

http://www.sportline.com/products/heart-rate-monitors.html

 

[Debbie23]

Thanks, gingergrrl. I really appreciate that.

I think I'm probably going to get one of the fitbits but use it with the app recommended on the other thread. I thought fitbits were tied to their own software. But apparently work with 3rd party apps so that's in their favour. I like the fact I can strap it on my wrist and don't need to think or remember to set it going, cognitively I'm not good at the minute so that seems a better fit for my needs.

I do like to consider several options though. So I'm very, very grateful for you posting that and will definitely have a look before I make a final decision.

 

[ahmo]

@sueami

 

[sueami]

Awww, thx @ahmo! I am actually feeling ok right now. Been resting hard all day and I think the NAD supps are helping a lot. Just hope I haven't set myself back too far. Waiting to see what tomorrow brings.

 

[Valentijn]

@sueami - A more realistic limit for heart rate is going to be 100-110. 85 or 90 is quite low, unless you're sitting around and not doing anything.