[mrsD]

It is difficult to say with the antidepressants in the mix.

These drugs were put on the market without long term studies.
And millions and millions of people took them.

Each person reacts differently depending on their brain make up.

Subacute degeneration also has motor issues. Vision loss etc.

There is a point where damage is permanent.
http://en.wikipedia.org/wiki/Subacut...of_spinal_cord

See what your neurologist says.

[julias690]

Hi again,
I guess I'm wondering what the treatment was that you used. On Monday May 7th, I started my husband on 1000mcg of vitamin B12 intramuscular every day. I am also still giving him Jarrows Methyl B-12 5000mcg sublingual tablets every morning on an empty stomach. He is still very upset daily and constantly asks me what is wrong with him and tells me that he is scared. He wants to know if he is going to make a full recovery. On April 23, 2012 his vitamin B-12 was 195. It seems like his long term memory has improved as well as his short term some. Every night his leg cramps are so bad he cannot sleep in bed and he has sores in his mouth. Any help is greatly appreciated.
Sincerely Julia

[mrsD]

If you are having him hold that B12 in his mouth? Sores can result. The oral can be swallowed, instead. Some people get very poor gum and mouth health, from long term illness and nutrient deficiencies.
Vit C, zinc and Co-Q10 are often used to improve oral mucosa.

The injections...are they cyanocobalamin? Daily use would expose the patient over time to cyanide, as it is cleaved off to activate the cyanocobalamin. Some people cannot handle this much cyanide (which is a poison) metabolically.

I don't think daily shots are needed past 7 days, as long as the oral is being done, and correctly on an empty stomach.

Also rapid treatment with B12 may lower potassium levels, temporarily, as the B12 stimulates the bone marrow to make more red blood cells.
Low potassium can lead to leg cramps and generalized weakness. So eating a diet rich in potassium is important.

What other drugs is he taking? That could factor into response and side effects too.

[deb54]

Originally Posted by julias690

Hi again,
I guess I'm wondering what the treatment was that you used. On Monday May 7th, I started my husband on 1000mcg of vitamin B12 intramuscular every day. I am also still giving him Jarrows Methyl B-12 5000mcg sublingual tablets every morning on an empty stomach. He is still very upset daily and constantly asks me what is wrong with him and tells me that he is scared. He wants to know if he is going to make a full recovery. On April 23, 2012 his vitamin B-12 was 195. It seems like his long term memory has improved as well as his short term some. Every night his leg cramps are so bad he cannot sleep in bed and he has sores in his mouth. Any help is greatly appreciated.
Sincerely Julia

Julia, I had leg cramps as well as burning feet and legs for the first month after starting methyl-b12 sublingual. I saw 3 of my docs for this, all of which said the cause was my feeling nerves regenerating. They also said to increase my potassium because this process requires more potassium than I normally needed.

Without much b12 coursing around, doing it's thing, building, repairing, allowing simple body functions possible, things most take for granted, our body just don't use much of the good nutrition we eat. B12 is a key that allows everything else to work properly. Put in that key and wham, things we've long forgotten, start happening again. In my case, a life altering surgery left me with little b12. Many of the changes I experienced during recovery were not just due to healing, but due to a b12 deficiency. I was grateful to be alive, the changes were assumed to be caused by the surgery.
Until that first dose of methylcobalamin I hadn't yawned, coughed, or been able to stretch my muscles. I "miraculously" was relieved of all allergies. (no b12=no immune system. Allergies are due to an over-active immune response.) Fibroids and psoriasis was gone
.
Many of my psoriasis friends are on biologic injections to supress their immune sytem. In essence, this is what my b12 deficiency did to/for me. With that first dose, everything changed, some not so good, but certainly wouldn't give up my memory and pain relief I've experienced.

Within a month of treatment, burning pain was gone, leg cramps still occur on a day when I take more b12 than usual. I eat a banana or a sweet potato and all is well. I've found rebuilding b12 to be very uncomfortable. The leg cramps are the worse pain I've ever expeienced.

I've had to stop using b12 several times in 8 months. Each time I stop, numbness and pain returns, as well as digestive problems, but allergies subside, no coughing, sinus, etc...As soon as I restart, leg cramps restart, though not as bad, I increase my potassium and all goes back to my somewhat normal function.

I use Pure Encapsulations liquid Methylcobalamin 5000mcg. I only use a small dose of this each day. I have never experienced mouth sores from it. This can be found online as well as some pharmacies. This is the brand recommended by all of my doctors. Perhaps a switch in brands would be helpful. I would also check with his doc to get their take on the mouth sores.

Hope some of this helps you all and best luck.

deb...

[mrsD]

This link will help you select high potassium foods:

http://nutritiondata.self.com/

example:
8 oz of V8 juice:
http://nutritiondata.self.com/facts/...oducts/10449/2
469mg potassium
The 12oz can has close to 800mg

The low sodium version of V8 has more potassium in it:
http://nutritiondata.self.com/facts/...oducts/10452/2
819 mg of potassium!
I use V8 after a work out for this reason.

The daily intake suggested today for potassium from the diet is
4.5 grams
So take a look at what your hubby eats, and figure out if he is low in potassium intake.
Each category on nutritiondata.self.com has a serving size listed, so please pay attention to that so you get accurate data.

This is a really good resource to also detail your magnesium intake, and that site also gives an inflammatory index which is helpful to lower inflammation in the body.

[julleri]

Does anyone know if glutathione exacerbates methylB12 deficiency?

I ask because, since learning of my B12 deficiency, I have done some research online about it. I have found some aggressive B12 protocols around, one specifically that, due to my antidepressant withdrawal, I do not think I could handle (it's way too intense).

The thing that does concern me, though, is that the protocol mentions to avoid glutathione and glutathione precursors, as for some, taking these things (undenatured whey, NAC, etc) exacerbated symptoms. Does anyone here have any opinions or experiences with this?

The reason I am concerned is because I have been eating twice a day some protein bars that do contain whey protein in them. I am eating them at the request of my therapist, as I need to gain weight (I've lost so much weight from both the B12 deficiency and antidepressant issues). I do not mind the bars and actually do like them for the extra protein and range of vitamins that they provide. However, I do not want to jeopardize my B12 recovery if by taking these whey protein bars, they are creating more abundant glutathione in my system, which could be in turn clearing out any unbound, free active methylb12 in my system, which I need for repair and healing on my nerves and brain (I have been having an exacerbation of b12 symptoms lately, mainly memory/brain fog/confusion and some more nerve pains and loss of sensation feelings in some parts of my arms/legs). And, since I am only taking 5000mcg of Puritan Pride as an oral swallowed pill (the sublingual) on an empty stomach, I feel I cannot afford too much glutathione to inactivate the small amount of b12 I may be getting from the Puritan Pride sublingual.

I'm sorry if this question is a little too technical or if anyone even knows if this is the case. I should be OK with eating a couple of whey protein bars a day, and not have to worry about interfering with my B12 recovery?

[Sallysblooms]

I have been a member on Phoenix Rising for years. Fredd is a special case. Another member that does not have CFS has explained this to me. I take NAC, Liposomal Glutathione etc. I check my B12 levels twice a year. Most people get enormous help from these supplements.

Most people do well on Rich's protocol for CFS. Fredd scared me too! ha

Just get your level tested and take your supplement for B12. My level is good, but I do take the sublingual every few days.

[julleri]

Thank you, Sally!

I tried NAC in the past, but I didn't really like how I felt on it. I don't know if it was from the NAC or from other things I was going through at the time. I don't really think I need it.

Sally, when you say you take the sublingual B12 every few days, how do you take it? Do you swallow the pill on an empty stomach, as MrsD here advises, or do you let it dissolve sublingually a little bit beforehand? Do you use Puritan's Pride, Jarrow, or any other brand?

Thanks again!

[Sallysblooms]

Subligual is under the tongue. I let it dissolve slowly. I had such a low level of B12 15 or more years ago that it was barely on the scale. I had shots and sublingual for years, now sublingual works great. Source Naturals is good. Methyl B12.

I had severe vertigo and problems from that low level. Reg. docs had no idea why. Makes me so sad I went through that, then CFS, then POTS. Finding integrative doctors are the key for me at least. He tested a LOT of things.

Things are better now. Docs seem to know more about B12, Vit D and others. So easy to prevent illness by checking the blood.

[julleri]

Originally Posted by Sallysblooms

Subligual is under the tongue. I let it dissolve slowly. I had such a low level of B12 15 or more years ago that it was barely on the scale. I had shots and sublingual for years, now sublingual works great. Source Naturals is good. Methyl B12.

I had severe vertigo and problems from that low level. Reg. docs had no idea why. Makes me so sad I went through that, then CFS, then POTS. Finding integrative doctors are the key for me at least. He tested a LOT of things.

Things are better now. Docs seem to know more about B12, Vit D and others. So easy to prevent illness by checking the blood.

Thank you, Sally.

This experience with this has been pure hell on earth for me, that and having had an adverse reaction to antidepressants and now withdrawal from them. My vitamin D is low, too. I'm supplementing that as well. I'm only 30 years old, too. I feel like a worn-out 75 year old man.

I really hope my conditions improve over the next year or so. I just worry I'm not getting enough B12 or that I'm not doing it right, etc. Everyone seems to do or say something different about how to get it. One doc said once-a-month shots were good enough, another says once a week then once a month. The method of taking oral (oral vs. sublingual) seems debatable, too. With all this debate, it just heightens my anxiety (which is already high from the antidepressant issues) as to whether I'm getting enough or am doing it right.

This might be a good question for MrsD - I have actually found a couple studies online that were done with the question of sublingual versus oral, and it seems that sublingual didn't make a difference in serum cobalamin levels versus high-dose oral just swallowed. I can't think of the studies off the top of my head, though. Maybe I can find them to share.

I am also giving myself a shot of methylb12, 1 mg, once a week for the next 9 weeks just to complete the shot series. It makes me feel better to just finish them off. That way I will have had 20 shots (or thereabouts) total, which should be more than enough to replete the liver. And on days I don't take the shots I will take the oral 5000 mcg.

Thanks again, Sally, for your advice!

Jason