Getting rid of my neuropathic pains, my attempt

[Lotus97]

Cynocobalamin isn't a good type of B12 to take. It breaks down into cyanide. Hydroxocobalamin or methylcobalamin are the types of B12 recommended for methylation depending on whether a person tends to overmethylate or not.

 

[Sallysblooms]

Check your A1C levels. Even if they are normal, you need to not have sugar and bad carbs. The nerves need to have a glucose level that is kept even, without the spikes from sugar. Alpha Lipoic Acid and Benfotiamine are both very important also. You are on those already. The book "Minding my Mitochondria" is an excellent book.

 

[Stillgoing]

Check your A1C levels. Even if they are normal, you need to not have sugar and bad carbs. The nerves need to have a glucose level that is kept even, without the spikes from sugar. Alpha Lipoic Acid and Benfotiamine are both very important also. You are on those already. The book "Minding my Mitochondria" is an excellent book.

Hi Sallyblooms

My eating is pretty good but it could be better. I looked at Terry Wahls diet. It sounds interesting. I've gone gluten and dairy free for long periods of time. Hers is the next step. I will definitely take steps towards her diet though

Today I followed it relatively closely. I'm just experimenting with how practical financially it is amongst other things.

It is annoying how it is more expensive to eat natural food

 

[Stillgoing]

My last A1C level was 3.7 which is the high end of normal.

I'll find out what my latest level is soon...

 

[Stillgoing]

Cynocobalamin isn't a good type of B12 to take. It breaks down into cyanide. Hydroxocobalamin or methylcobalamin are the types of B12 recommended for methylation depending on whether a person tends to overmethylate or not.

Hi Lotus,

I am only taking Enyzmatic B12 now. My serum level is over 1000 now.. which seemed to shock the nurse when I rang up for the results

 

[Lotus97]

Hi Lotus,

I am only taking Enyzmatic B12 now. My serum level is over 1000 now.. which seemed to shock the nurse when I rang up for the results

Those type of B12 tests aren't really helpful for people with CFS. This is from Rich about the subject:

High serum B12 levels can be caused by a functional B12 deficiency. Based on testing in a lot of people, it looks as though this is pretty generally found in ME/CFS. It is consistent with the Glutathione Depletion-Methylation Cycle Block model for ME/CFS. What happens with a functional block is that the cells are not able to use B12 properly, so they export it back to the blood bound to haptocorrin. The liver cells are the only ones that can import this, and the residence time in the blood is about a week. So when a serum B12 measurement is made, it is dominated by this fraction of B12, which is not available to cells of the body other than the liver cells. It would be better to do a urine methylmalonate test to see if there is a functional (rather than an absolute) B12 deficiency. The serum B12 test is useful for detecting an absolute B12 deficiency (as can be caused by pernicious anemia or a transcobalamin deficiency or gut surgery or celiac or Crohn's disease), but it is not useful for detecting a functional B12 deficiency, which is what is found in ME/CFS.

A functional B12 deficiency means that even though you have enough B12 in your body, your cells are not able to use it properly. In ME/CFS, this is caused by depletion of glutathione. When glutathione goes too low, the affinity of the CblC complementation group (part of the intracellular processing pathway for B12) for B12 goes way down, based on research published last year from Korea. Thus, even though there is enough B12 present for normal operation, this group is not able to bind strongly enough to B12 to keep the rate of B12 processing high enough to meet the demands of the cells for methyl B12 and adenosyl B12, which are normally produced in the cells themselves from whatever form of B12 comes in from the diet and supplements.

This is confusing to the docs, who have not been trained to understand it. They know about absolute B12 deficiency, but not about functional B12 deficiency. When they see high serum B12, they tell people to stop taking it. Unfortunately, this is not the right advice. It's necessary to take relatively large dosages of B12 (such as 2 milligrams per day or so), either sublingually or by injection to get enough into the blood, together with oral methylfolate at about RDA levels (a few hundred micrograms per day). This is what is in the simplified methylation protocol, together with some other supplements to cover possible deficiencies of essential nutrients. Over a period of a few months, this usually overcomes the vicious circle involving glutathione depletion, functional B12 deficiency, methylation cycle partial block, and loss of folates from the cells.

 

[Stillgoing]

Progress

Day 30 of ALA (1 or 2 x 250)
Day 28 Benfotiamine (3 or 4 x150mg)
Day 23 Methy B12 Enzy took 3000 in morning- 2 hours.(plus 2 jar pm)
Day 22 Solgar Methyfolate (day 12 2 x 400)
Day 22 Magnesium Malate 3x1

So I think things are improving slowly for me. Still convinced more than ever that my pains are directly related to B12 deficiency . Recent tests still show high MCV and MCH.

Tingling and other sensations are less intense, although they worsened for a while. Sleep has improved a bit also. I'm thinking I really need or want to increase my methyl b12 to really high dose for a while. But it is so expensive in UK compared to US. i wish I could get methyl b12 on the NHS

Thinking of also adding adenosyl b12 then LCF

Have improved diet to included buckets of salad a day plus meat/ fish (Paleo-ish). My most recent HbALC is 40 (20-42) which is quite high so hopefully this will address that.

As always any advice welcome...

 

[August59]

I bought one of those feet and calf massagers from like Brookstones. The cycle on it squeezes lower then goes on up the calf. When my feet get bad I use that lying down and it feels so good. When out and about I use the compression socks to keep any edema from squeezing on the nerves. Jobst and several brands make them in dress socks to wear with khaki's.

 

[Calathea]

Don't forget that if you order from the US and it comes to more than £15, you're likely yo be hit by a £11.70 customs charge. There are plenty of sources of mb12in the UK, though. I'm about to order the Swanson 5mg mb12 from Amazon for £8.75.

 

[Stillgoing]

Don't forget that if you order from the US and it comes to more than £15, you're likely yo be hit by a £11.70 customs charge. There are plenty of sources of mb12in the UK, though. I'm about to order the Swanson 5mg mb12 from Amazon for £8.75.

Before you do, I just ordered 12 enymatic therapy b12, which according to many people is the most effective, from http://www.yourhealthfoodstore.co.uk/.

It is worth doing because you get 33 % of your first order. Delivery is free. Works out as £5.25 a bottle of thirty..for 12

 

[Stillgoing]

but thanks also.

I have just ordered some Swanson 5mg from Amazon.. to take alongside my Enzymatic B12... more cost effective

 

[heapsreal]

what about a tens machine, they would work well on lower legs.

 

[Calathea]

You can borrow TENS machine on the NHS from a physiology. Worth doing, since they don't work for everyone (they don't for me, for instance).

 

[Stillgoing]

I've been using a cheap tens machine from Lloyds..

I like it.. not sure if it helping...

Im still puzzling over what is causing my tinglings....

I have come to the conclusion is it partly muscle tension, part circulation, part B12 issues.

I have extremely clicky joints, around the time thses paresthesias started, which suggests to me I am holding a lot of tension in my muscles.

Stupid body....

 

[Stillgoing]

Day 39 of ALA (1 or 2 x 250)
Day 37 Benfotiamine (3 or 4 x150mg)
Day 32 Methy B12 Enzy took 3000 in morning- 2 hours.(plus 2 jar pm)
Day 31 Solgar Methyfolate (day 12 2 x 400)
Day 31 Magnesium Malate 3x1

I also tried one day of 33,000 of methyl b12 on Saturday. Didnt notice anything much.

One thing that has happened in the last week is that I am getting a lot more skin crawling over most of my body when I am tired, Feels like I am being tickled everywhere. Quite intense sometimes. Apparently it is called formication

Is it a good sign or a bad sign? Who knows.......

 

[Lotus97]

Have you considered supplementing with lithium? That's supposed to help with B12 transport. And I assume you're taking the B12 sublingually?

 

[Stillgoing]

Yeah I am taking the b12 between my lip and gum. I leave it there for at least an hour, sometimes 2.

Isn't Lithium primarily for mood stabilisation? Although that may be helpful in itself...

 

[Stillgoing]

Aha.. I just read up... it seems helpful in many ways... curious.....

Have you tried it?

 

[Lotus97]

Yeah I am taking the b12 between my lip and gum. I leave it there for at least an hour, sometimes 2.

Isn't Lithium primarily for mood stabilisation? Although that may be helpful in itself...

High doses of lithium are used for bipolar disorder. The doses used for that are between 50-200 mg elemental lithium (from 300-1200 mg lithium carbonate). People take lithium orotate as a supplement. One tablet only has 5 mg elemental lithium so the dose is much lower. Most people do take supplemental lithium for mood disorders (sleep, depression, anxiety, etc), but lithium also can help with B12 transport. I don't know the specifics, but it has been discussed in the methylation forums. There's also a thread about transcobalamin deficiency:
http://forums.phoenixrising.me/index.php?threads/transcobalamin-deficiency.23027/

Aha.. I just read up... it seems helpful in many ways... curious.....

Have you tried it?

I have tried it. It didn't seem to help my mood, but I've heard from other people who have found it helpful. I was reading that it's helpful for brain inflammation so I think I will continue to take it because that seems to be a common issue. My serum B12 was high even though I had been supplementing with lithium and B12, but I was taking a low dose of B12 and I had only been taking B12 and lithium for a month or two so maybe it takes more time to work. I heard from who said their serum B12 went down after taking lithium. Maybe I'll ask them how long you have to take it before it works. To be honest, I can't tell if 95% of my supplements are working or not. I've thought about dropping a lot of them, but I'm afraid I'll have a crash if I do...

 

[Stillgoing]

i think I might give it a try.

But like you I am a bit worried about taking so many supplements, not being sure if it is helping or not and then being worried about stopping them...

It is an expensive business....