week 8- more start up?

[suzanne]

I am at about week 8. I have the co factors all in place. I have been on 1000mcg methyl b12 for the past 3 weeks and 600mcg of methyl folate.

Last ight i increased the methyl b12 to a total 1250mcg, in 5 split doses through the day. I immediately got a symptom of body burning. Today I just feel awful- increased headaches and body itch with some nausea, plus my body aches have also increased.

I wasnt feeling fabulous before i increased and now I feel worse. It is a bit hard to knwo with this protocol whetehr i should just have left alone at the 1000mcg dose or if i should keep pushing up the b12 in the hope that sooner or later I will feel better.

I read with someone that they had start up for about 4 months and others it seems around 2-3 months....there is probably no answer to whether I should persist in going up with the b12 incrementally. I am just trying to find the best path to fast track the B12 start up and but not knock myself out.

I wonder if others of you get more start up every time you increase the mb12 and how long does the start up from each dose increase last?....It is hard to believe hat the titration up from 1000 to 1250 is so noticable- but I do feel more unwell, no doubt about it! Who would believe that this protocol could be so tricky.

 

[gu3vara]

Just an idea but maybe you just take too much methylfolate, looking at rich simplified protocol, it requires to take only 210 mcg of it and you take 3 times more of it.

 

[determined]

In the past, when I've tried a few different things relatively close together, I've learned that I am too fragile to do that. I worry that you still don't know the effect/possible benefit of the calcium d-glucarate. How can you sort out the symptoms and know which change is the cause?

I still haven't increased my dose of mB12/methylfolate, partly because I'm still trying to begin more rigorous exercise to see where my limits are. I'll be interested to see what other people have to say here.....

 

[suzanne]

You are right that I just tried too many things at once and have had a really difficult 12 days- no dobt that the increased b12 and cdg were both contributing to my symptoms

So, I have dropped the m b12 back to previous dose of 1000 mg a day and will stay with this for the while.

The cdg alone is causing sufficient challenges for me. I am experiencing severe nausea and headpain- at first I kept thinking it was migraine but it isnt- it is just extreme symptoms that seem to go on and on. My guess is that these symptoms are caused by opening up the liver detox pathway from the glucurodation process.

I have had to reduce the dose of cdg to just a crumb of the tablet and still it is knocking me around I intend to take my next crumb by putting it in water and only dring half the dose- does this sound reasonable? If this continues to knock me around ( I am almost couch bound with the symptoms) then i will consider just supplementing eery 48 hours rather than 24 hours. I am starting to dread taking this stuff

...but what motivates me to keep going is that since i startd the cdg 12 days ago, I have had only 1 migraine on about day 3. That is way better than every other day...so, perhaps this is going to be part of my solution for migraines- shame it makes me feel so yuk- perhaps that will improve but at day 12 I am still getting the same symptoms, so i suspect the dose is just too high and flooding my body with toxins faster than i can eliminate them. hard to believe, eh, when it is seriously the smallest amount of a tablet crumb- but not small enough!

 

[leela]

could you tell me what cdg is?
i have migraines very often to, and am always on the lookout for stuff that helps.
thanks!

 

[suzanne]

Hi Leela

cdg is short for Calcium d glutarate. A kind person from this site ( sign name determined) suggested to me that I might try the cdg for migraine. If you google cdg there is plenty of information on line. It helps a critical liver detox process in the body and also helps the body to eliminate eostrogen where there is an eostrogen dominance problem. My hormone saliva tests indicate that i have an eostrogen dominance problem which they ay is not uncommon with ME/ fibromyalgia.

I also know that my liver detox pathways are not efficient.

Trouble is the cdg is making me feel really sick at just a crumb of a tablet. I guess that it is doing its job an helping my liver to process junk- it does seem to have made a difference to the frequency of my migraines so far, and I had been getting them every other day- but I have only been taking it for 12 days and I am on such a small dose, I will need more time to fully assess the benefits.

So, word of advice if you intend to try it - go really low dose to start with- the first coupe of days i had terrible "hangover " symptoms.

 

[leela]

thanks for the reply, suzanne.
i'm sorry youhave been having so many migraines, and that the cdg is causing more side effects than good
i find this true for migraine meds in general, so I don't take them any more.
you've inspired me to try a small dose of the cdg to see.
i hope you find the right balance soon, and stop having these awful symptoms.

Have you tried other means to support your liver and the detox process? Pm me if you need suggestions for managing a too-fast detox.

 

[determined]

I recently learned (yet again!) how important calcium d-glucarate is for me regarding migraines. I didn't realize I was on my last bottle and so I ran out. By the time I got my order (they don't have my brand at my local health food store), I was in trouble. After only one week without cdg, I had a migraine again! They are SO UNPLEASANT! This has been one of my top supplements over the very long time I've had CFS.....I do encourage you to keep up with it, at very small doses. Wait a good while before you increase it - I usually waited one week in between increases. Eventually, I got to the top effective dose.

Some of us are more sensitive than others. For me, the methylations supplements are incredibly powerful at tiny fractions of what other people are taking. I believe in finding the lowest effective dose. It can save money and it can save you from the "lost time" that can happen when you have overstepped the detoxifcation limits of your body. Rich once said that the negative start-up effects can "have momentum," and I think about that a lot. I don't want that to happen!

I'm still really happy with the effects from my methylation supplements; I have never increased my dose from the very beginning. Maybe I will increase it a bit over Christmas break. I still can't work full time (chemical sensitivities now instead of weakness/fatigue), but I love my job and don't ever want to give it up.

 

[leela]

could either of you suggest a favourite brand?
oh and an starting dose/target dose?

 

[determined]

I use Tyler (or I guess it's called Integrative Therapeutics, Inc. now). Each three capsules provides 1.5 g of calcium d-glucarate.

When I started, I opened up one capsule, took out a very small amount (probably about 1/100th of a capsule...no I'm not kidding), put it in a new, empty capsule. Then I would wait a week before increasing my dose. Even at the beginning, I would get stomachaches and an increase in chemical sensitivity. This would last for about one day and then I would be better than before.

My highest dose was 6 capsules a day. I am now taking only four a day and it seems to be enough for me. I rarely get migraines and if I do, it's because I have run out of cdg or forgotten to take it consistently for a stretch.

My motto is to try NOT to have any start-up effects....I usually do, though. At my worst, I have been extremely fragile with any new supplement/food/chemical exposure. So, you may be able to start with a higher dose. But why risk a rough period if you don't have to?

Best of luck!!

 

[leela]

Thanks so much for this.
I have pretty bad MCS too, so I'm glad you warned me to look out for that as a symptom of dose overload.
What a complex, stupid, messed-up disease this is!!

 

[suzanne]

I am amazed that the cdg has really made a difference to he frequency of migraines in these past 12 days. I am keen to try and stay with this supplement based on my early results and also what determined has found- that when she drops this suppplement off for a week, bang, the migraines are back.

I did not take enough notice of the nee to start really low- I initially thought I would be ok with about 1/4 of a 250mg tablet and it just eve me incredibley severe headache, nausea and body itch- whcih is an exacerbatin of my existing symptoms. I take Natrol brand as it was the lowest dose I could find. I am now trying what determined suggests- taking the smallest speck of this stuff- and even still i am having symptoms- so i am now going to dilute that speck in water and drink a half dose, and hopefully minimise my down time.

I have gone back to the previous dose of 1000mcg of mb12 and will just keep the protocol dosing stable whilst I try and slowly increase the cdg. If I got the migraines under control, perhaps i would be better placed to be able to return to work. I know what determined means, it is a high price to have to give up your job, which I had to do 18 months ago. I havent given up hope that in 6 months from here i might be able to return- we have to keep hope.

Thanks guys for your input. Leela, i will pm you now.