Sinclair43's Story

[Vix]

Hi Sinclair
Yes it is a good idea to take a B complex if you are taking a high dose of any of the B vitamins. The patches seem to be the better of all the other options of taking b12 (besides injections) so yes it might be worth a try to see if you have a response to them (keep a diary if you do and sometimes changes can be subtle at first). Bear in mind though that they unlikely to be as effective as jabs and they may not help much at all.

It will be a good experiment if you can try and increase your water uptake and then see how the hb etc looks. It gets my mind whirring, making links, wondering if dehydration could cause you to be able absorb the b12 less effectively by increasing your hb etc. Ignore me, thinking out loud! Staying hydrated can only ever be a good thing anyway!

If you want to post all your results up you can, I can't promise we'll spot anything useful but sometimes some fresh eyes on something can help.
Vx

[sinclair43]

Hi Vix
Thanks for that. I will give the patches a go and see what happens. I found some patches that contain B's and other vits, presumably synergistic with B12. They are Dr Davids Methyl B12 with B's 9,6,5,3,2,1 plus Vits E,A,K & D. If you have heard any bad reports about these please let me know.

My test results are quite lengthy, so I will come back to you and post the results over the weekend. This is the first time I have had elevated B12 results, probably less than 9 months ago it was just under 500 so I am kind of curious as to why it has shot up along with hb and rbc. At the end of 2011 when my B12 was 381, my hb was 14 (11.5-15.5) and Rbc 4.53 (3.94-5.15) but this was accompanied by a slightly high MCV. I did take sublingual Methyl B12, probably 4-6 months ago so perhaps it has just stayed around and is not being used for some reason.

I was reading an article the other day about the reasons for high B12 in CFS patients. Not too good at doing links but I will see if I can find it and let you have a read. You may well know all this so sorry if you already know.

Thanks again Vix

sinclair

[mpohjola]

[BeeNumber12]

[sinclair43]

Hello Marco

Thank you for getting back to me. I have all of those symptoms with the exception of sore armpits. I did lose weight but that was probably due to my thyroid medication being increased.

2 years ago I had B12 of 381 with high MCV. This was ignored by the GP but I have read since than you can start to get B12 deficiency symptoms below 500 so if I was deficient at that time it might explain why I have had such difficulty getting my thyroid back on track.

Have all your symptoms gone now that you have injections.

I was reading on a site called Phoenixrising.me about elevated B12 in people who suffer with CFS. This is an extract, but its probably something you all know, so sorry if I am repeating information that is common knowledge.

5. One of the jobs that glutathione normally does is to protect your supply of vitamin B12 from reacting with toxins. If left unprotected,[/i] vitamin B12 is very reactive chemically. If it reacts with toxins, it can’t be used for its important jobs in your body. A routine blood test for vitamin B12 will not reveal this problem. In fact, many people with CFS appear to have elevated levels of B12 in their blood, while their bodies are not able to use it properly. The best test to reveal this is a urine organic acids test that includes methylmalonic acid. It will be high if the B12 is being sidetracked, and this is commonly seen in people with CFS.

6. When your glutathione level goes too low, your B12 becomes naked and vulnerable, and is hijacked by toxins. Also, the levels of toxins rise in the body when there isn’t enough glutathione to take them out, so there are two unfortunate things that work together to sabotage your B12 when glutathione goes too low.

7. The most important job that B12 has in the body is to form methylcobalamin, which is one of the two active forms of B12. This form is needed by the enzyme methionine synthase, to do its job. An enzyme is a substance that catalyzes, or encourages, a certain biochemical reaction.

8. When there isn’t enough methylcobalamin, methionine synthase has to slow down its reaction. Its reaction lies at the junction of the methylation cycle and the folate cycle, so when this reaction slows down, it affects both these cycles.

sinclair

[Vix]

Hi Sinclair
Thanks for that, interesting reading! I wonder if you might be interested in reading my experiences following a methylation protocol which is along the lines of what you have posted, see here viewtopic.php?f=9&t=13292

I have seen some improvements using various supplements. The whole protocol is expensive and time/energy consuming so I am not able to follow it fully although I am trying to do what I can. This is quite a good document which explain about how the doctor who has come up with this sees things. http://www.scribd.com/doc/132017201/Dr- ... -to-Health

She too is of the opinion that normal or high b12 levels can be seen in people who are actually functionally deficient due to genetic errors and environmental factors.

All this is just theory at this stage and I think it can't hurt to do as Dorothy says and think about seeing a neuro. Just bear in mind that not all neuros know about the neurological impact of b12 deficiency which is obviously terrible but sadly true. However it is always a good idea just to be checked out.
Vx

[sinclair43]

Hello Dorothy and thank you for taking the time to come back to me and read my posts.

I have read through both your links on late onset MS, thanks for that. As you can imagine I am hoping that it is not MS. Looking back on my test results the doctor did an ESR which I believe flags up any inflammation in the body like aneamia, but have no idea whether this would pick up LOMS, probably not but at least it has ruled out some other conditions. The result was 17mm/hour. He also did an HbAlc level which is another test for diabetes, or glucose in the cells I think, which shows what has been happening over the past 2-3 months. This was 5.4% (4.0-6.0) so we can rule out diabetes.

There are a few reasons why I think it is more likely to be a B12 deficiency, I am 71, I have another autoimmune disease i.e. Hashimoto's thyroiditis and I have a history of taking antacids, proton pump inhibitors when I suffered with a duodenal and then gastric ulcer about 15 years ago, so I wouldn't be surprised if my parietal cells/intrinsic factor has been damaged or just gone altogether. The only medications I take are thyroid hormones

I am going to try methyl B12 patches and see what happens. It might be sometime before I get to see the neurologist and I will write down my symptoms. I can probably guess when the tingling in my legs etc started, but it has never gone away, it might be less irritating some days but is always there. The thing I worry about most is having an MRI, they are going to have to either kill me or sedate me to get me in that machine.

Thanks again Dorothy, who knows the B12 methyl patches may work!!

sinclair

[mpohjola]

[sinclair43]

Hello Marco

Glad to know you have seen an improvement, at least you know the problem is B12, just a case of fine tuning hopefully. Vix has put up some links for me to read so presumably you are well conversed with the methylation protocol.

My hitherto well oiled brain has seized up to some extent and I have to read everything in small doses. Are you familiar with the Phoenixrising site? I just came across it but it does follow much the same protocol but in relation to ME/CFS. The extract I sent you was not the one I intended (confused) but here is another bit which might be of interest.

Quote.............
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...... Unquote ".

Why do you think methyl B12 is the most challenging?.

There is a fourth type of B12 out there isn't there, forgotten its name.

thanks again

sinclair

[mpohjola]