New to B12 Diagnoses
 

Hi! I am new to this forum and I feel like I might've won the lottery. I have been ill for 2.5 years. In Oct. of 2005, my doc prescribed Tequin for my supposed Legionnaires Disease (didn't have it in hindsight). I have been on disability ever since. Pre-Tequin I was a physically active, career, family woman. Since I've taken this antbiotic I have never been the same since. However, I have been dx'd since then with low potassium (I was hospitalized for 5 days due to that), low sodium, low ferritin (results was 6), low thyroid, and now my Naturopath says I have low B12. I believe in my heart of hearts, this has been part of my problem for the last 2.5 years. For the first time my B12 was tested January 30, 2008 and my result was 507 (range 200-900), and then retested in March of 353. I have been battling Neurological symtoms since taking Tequin. I have had nerve twitches, extreme fatigue, very, very sensitive to noises, cold feet, irritability, personality change. I feel noises in my forehead and throughout my body. My reflexes are very, very strong (I almost kick myself lff of the table). It's like my nervous system is highly exciteable. Since January I have experienced tingling feet and tingling hands, that gloved feeling (like I'm touching something, but I'm not) and my feet look purple like they are not getting any circulation. I have had a headache for 2.5 years. I have mental fog, and my memory is terrible. I have lost muscle mass also, even though I weigh the same. My ND put on methyl-b12 1000 mcg. I took 1000 mcg for 2 weeks, and bumped it up to 2000 mcg for one week. I got this horrible, horrible worse headache. My methyl-b12 was not Jarrows. I then tried one day of taking 5 lozenges and my headache was worse, and it put me to sleep. I slept for 12 hours that night. Last week I tried a B12 injection, the cyanaxo type, and that gave me huge headache, but 2 days later, I feel a little better. My question is, I feel there is no doubt that I need to raise my B12 level, and it's contributing to my health problems, but I seem to be very sensitive to B12. Is this possible? I just bought Jarrow's, and I took 1000 mcg yesterday and one today. I would like to take more, but when I took more last time, it really made me sick, as well as the injection. My ND earlier this week, too my MMA and homocysteine test. I don't have the results from that yet. I really feel this is a missing piece of the puzzle, so that I can feel better again. I can't take more than 1000 mcg. a day. Has anyone else had this happen to them. I just want to get well, and I think the more I take, the faster I will. Any thoughts? Thanks, and I appreciate any advice.

Tequin
 

Tequin is a member of the fluoroquinolone family. These drugs have extensive
neurological effects. Some permanent.

The mechanism that they use to cause neuropathy is not understood at this
time. So knowing what to do to counter the damage is only guesswork.

Methyl B12 enables the conversion of serotonin to melatonin --melatonin is the sleep hormone. So it is possible you feel tired because of this.

Also you could try adding P5P (activated B6) and folate to your supplements, since B12 uses them too. They work as a team.

If high doses bother you, just stay at the 1000mcg range. Studies have shown that it works daily as well as monthly injections. Take one an empty stomach.

Some drugs that cause neuropathies, respond to l-carnitine and CoQ-10.
HIV drugs and chemo both damage mitochondria. So if the Tequin works that way--you could try to supplement with those. They are not harmful, but they are expensive. This would be an experiment on your part.
We have some posts about that on our Peripheral Neuropathy board.
Just search there and the posts will pop up.

There are forums and websites on the net about damage from these drugs.
You'll have to Google those yourself.

Some people with very low potassium react to B12 because B12 stimulates formation of blood cells...and potassium is robbed from the serum to build those. So you may need higher potassium for a while. That you should discuss with your doctor..because too much is as harmful as too little.

Sorry about the duplicate. I'll stay at 1000 mcg, I have no choice, but was really hoping to take more. I'll watch the potassium, because I've had that low before in 2006. Thanks for your help.

Hello mountainpass,

I have already replied separately to your PM of the same subject. As promised, here is a more detailed response.

To make it easier to follow this, I will make a summary of what you have told us, regarding your B12 problem; I am assuming that your units for serum B12 are ng/L (= pg/ml). Please let us know if I have made any error:

• 30 January 2008: Test - Serum B12 = 507 ng/L (= 374 pmol/L)
• ?? March 2008: Test - Serum B12 = 353 ng/L (= 260 pmol/L)
• ?? March or April 2008: Commenced B12 Treatment - 1 x 1000 µg/day methylcobalamin for 2 weeks
• ?? April 2008: Increased B12 dose to 2 x 1000 µg/day methylcobalamin for 1 week - horrible, horrible worse headache
• ?? April 2008: Increased B12 dose to 5 x 1000 µg/day methylcobalamin for 1 day - headache and put to sleep
• Late April 2008: One cyanocobalamin injection - huge headache
• Early May 2008: Commenced 1 x 1000 µg/day Jarrows methylcobalamin

I shall consider separately the three issues of cause, diagnosis and treatment:

1. Cause

There are many possible causes of vitamin B12 deficiency; hopefully by now you will have read about these already. You can find this information on the forums and elsewhere on the www, including my web site.

One possible cause is bacterial overgrowth of the small intestine. This could prevent absorption of the B12 from your food; it might even prevent absorption from oral B12 supplements.

One way to get this bacterial overgrowth is to take antibiotics. These often kill the beneficial bacteria in your intestines, leaving to harmful ones to take over. This is why patients are sometimes advised to take doses of "good bacteria", such as acidophilus, after finishing a course of antibiotics.

It is possible that the Tequin has killed off your good bugs, leaving you with an overgrowth of the bad ones, thereby causing your B12 deficiency.

I suggest that you discuss this possibility with your doctor. Perhaps he/she will refer you to a gastroenterologist for an investigation.


2. Diagnosis

As I have explained in detail, on my web site, serum B12 is not useful as an indicator of vitamin B12 deficiency. It is potentially useful as an indicator of your B12 body stores, but only if you have ceased treatment for several weeks before the test.

I note that your reported serum B12 level fell significantly early this year. If you were not taking any supplements at that time, the fall in serum B12 level does indicate a severe depletion of your body store in a very short time. This suggests that something is interfering with the recycling of the B12 in your body.

Unfortunately, you appear not to have had a test for methylmalonic acid before taking supplements. For reasons that I have given in detail on my web site, you cannot now use MMA for diagnosis because you do not have a valid "before" result. You can still use MMA to monitor treatment.

Please see my post #27 on this thread for an explanation:

http://neurotalk.psychcentral.com/thread43009-3.html


3. Treatment

My impression is that you have not understood how the oral B12 treatment works, and therefore perhaps have expected too much too soon.

The purposes in taking high-dose B12 are:

• Quickly reverse the deficiency - ensure that B12 is available to cells for metabolism and minimise risk of irreversible harm
• Build up your body stores - ensure that there is no depletion in future

Even if a person cannot absorb any oral B12 normally, they can usually absorb about 1% of any dose. This is possible because of a process called "passive diffusion". This means that, unless you have a particularly unusual problem, you should absorb about 10 µg of each of your 1000 µg doses of methylcobalamin. It will therefore take about 200 to 300 days to completely fill your body store with the normal supply of 2 to 3 mg B12.

This is not how long it will take to reverse the deficiency. Your metabolic markers, indicating cellular deficiency, should return to normal within a few weeks of commencing mega-doses of B12. It can, however, take many months or years for your nerves to recover, so you need to be very patient.

You could take 1000 µg twice each day; one before breakfast and one before your evening meal. This should fill your body store in 100 to 150 days. Another alternative is to have a series of B12 injections, called loading doses. These are typically given as 7 injections of 1000 µg over a two week period. I have explained more about B12 treatment on my web site.

Because you had a bad reaction to more than the initial dose of 1 x 1000 µg/day, I suggest that you stay on the Jarrows 1 x 1000 µg/day. This should be sufficient to reverse your B12 deficiency, as well as gradually build up your body store.

I do need to offer a caution about oral treatment. I said above that "unless you have a particularly unusual problem, you should absorb about 10 µg of each of your 1000 µg doses". If you do have a bacterial overgrowth of the small intestine, you might not absorb any B12, even by passive diffusion. This is why it is very important to monitor the response to treatment.

You also need to know that you are not alone in your experience with unpleasant effects after taking B12 treatment; there have been many reports of this on the forums. I had very worrying symptoms after I commenced my 2 x 1000 µg/day cyanocobalamin, after I discovered my B12 deficiency in 2005. For a while, I was worse that before I was before commencing treatment. This was possibly caused by hypokalaemia, a deficiency of potassium. Mrsd has explained this potential problem to you in her post.

You should continue to monitor your treatment, to ensure that you are actually absorbing the oral B12. I note that you have just had a test for MMA and homocysteine; these are the best available tests for cellular deficiency. If these are normal, then this indicates any deficiency has been reversed, and your metabolism is returning to normal. You might still feel absolutely rotten for a while, but at least you have the B12 problem under control.


I suggest that you do the following:

1. Continue with the methylcobalamin 1 x 1000 µg/day

2. Discuss with your doctor the possibility of bacterial overgrowth of your small intestine as a potential cause of B12 deficiency.

3. Ask your doctor to order new tests for methylmalonic acid and homocysteine, after you have been on treatment for at least another three weeks, if the results of your first tests are abnormally high.

Please let us know if you have any further questions.

Paul

I have had extreme difficulties with toxins that came into my body as "medicine" -- so I'm sympathetic.

I started using Milk Thistle to clear the toxins, and that worked quite well. Don't take it when you have to go to work, because the first few days when it releases toxins that were caught in your liver are pretty intense.

Then, I also used a Heavy Metal Cleanse, and that made a HUGE difference. But I could only do that for one of the four weeks because it was so intense in how much it released.

Hi guys. To read these threads and here about all the complexities B12 can cause is quite alarming, but also, as i think many B12 sufferers have found, its very liberating to read others side effects, as they then explain things about oneself that has gone undiagnosed. Its like a voice in your head that yells " See, I told you you were'nt going crazy.!!! this IS happening to other people..WOW..and the doctors say its just stress..PHOOEE to them."
I have been diagnosed with pernicious anemia only early last year, but have felt that "something" was wrong with me for years before then, and just saying 'your iron levels are low, take some iron and you will be fine' never solved the problem. But now...Even with the B12 injections, i am trying to find a happy medium between jabs. every three months is way too long, but the docs say ,'no..thats the norm'... To me, every month is stretching it. Even though my levels are, as they say 'within the acceptable level'....I feel that maybe long term deficiency has taken its toll and done some irreversible problems are with me forever. I mainly speak about the neurological effects on the mind. How can i overcome this. Any ideas ? as the doctors here in Australia, well the G.P's that i have seen, don't Know ****. sorry but its frustrating. The fatigue, the confusion, the memory loss and the issues with central vision, have been there constantly and i feel as though i am losing my mind a little.

Paul, all I can say is, "Wow!". All or your knowledge is amazing and appreciated. Since I have posted my original thread, I have taken 6 hydroxo injections in a row, after the 6th one, I started to feel funny, i.e. heart racing, chest pain, and since then I have cut back to an injection every other day. As of the day before yesterday, I was taking only (1) 1000 mcg of m-b12, I took (2) lozenges yesterday, and I notice my feet aren't burning so much, they feel a lot better today, so I took 2 again (1 in the AM, and 1 in the PM). I also will be taking a m-b12 injection tomorrow AM, and we'll see how that goes. My doc will be testing my serum, MMA and homocysteine, and some other tests the 3rd week of June. I am taking probiotics now, because the doc who gave me the Tequin, really clobbered me with antibiotics, so my Naturopath doc, told me I should take some. He recommended Pro8. As of April 29th, my serum b12 was back up to 521, that was after 5 weeks of the Jarrow's 1000 mcg. He also tested my C-Reactive Protein, which was 1.6 (0.0-4.9). I can't thank you enough for responding to me. I'm reading everything you have written over and over again to try to understand this. Thanks again. D

Hello mountainpass,

Would you like to post here a copy of your post on BT? If you have a technical problem doing that, I can do it for you; I just need your ok to do it because it is your post. I can then post a copy of the relevant parts of my PM to you. Other members here can then be updated on your MMA results, and see the full context of your most recent post here.

What would also help would be a summary of your tests and treatment, with dates and units of measure. Perhaps you could copy the summary in my first post on this thread, and correct and complete it.

Paul

If
 

If you take B12 orally in any form, you need to do this on an empty stomach.

Also I have seen estimates that up to 10% may be passively absorbed orally if taken correctly.

Passive absorption of drugs in the microgram range does not occur reliably due to fiber/food influences. This is trug for digoxin and thyroid hormone.

So make sure you have no food in the stomach and for 1 hr after when using the oral B12.

[Paul, do you know anything about white spots on the skin. I've googled, and I found that it's B12 related, but I can't find any info about it going away with B12 therapy. I have it on the outside of my forearms, my lower leg area, and a couple on my abdomen. Have you come across this in your research. Thanks. D