GREAT RESULTS FOR 3 DAYS, THEN NOTHING

[Dopey-Grumpy-Sleepy]

Hi. This is my first post, although I've been following posts for awhile. I had an immediate, fabulous result from B12 injections after the first 3, but then Nothing! After each of those injections I felt as if layers of gauze fell away from my brain and everything became sharp and clear. My body was filled with strength and energy. What I don't understand is - What happened?? Why did the positive effects stop?

Brief background: I was diagnosed with low B12 (150) four months ago. I've done 7 daily injections, then 4 weekly injections and now monthly injections "for life". I do see some slight improvement for about a week after the monthly injection, and then it's back to feeling awful until the next one. My last B12 check showed 630, so I know that my doctor will not do anything but follow a monthly injection protocol (she's not one to color outside the lines - lol). Has anyone else had this reaction to B12 injections? Any suggestion about where to go from here?

Thanks, D-G-S

[Gambit62 Administrator]

my symptoms seem to come back within 24 hours - you are certainly not alone - and your doctor sounds like so many others.

sounds like you have a functional B12 deficiency caused by high levels of B12 in serum - basically the body reacts to high levels by trying to stop B12 getting from blood to cells where it is needed - its a bit like having a dam blocking the flow of water. What seems to work is keeping levels really high so the water trickles over the top of the dam.

it's discussed a bit in this paper

qjmed.oxfordjournals.org/co...

possible that knocking down the dam might work as well - but that means letting B12 clear from your system and potentially being very ill for a while and then starting off with much lower levels of B12 - and that does seem as if that may work for some people but it's not an area that appears to have been investigated.

[Dopey-Grumpy-Sleepy in reply to Gambit62]

Thank you for your reply and the link to the paper about high levels of serum B12. (Sheesh! That article can scare a person half to death!!) Your analogy of water over a dam helped my poor fuzzy brain grasp the point. The article defines high levels of B12 in serum as 950 pg/ml (which corresponds by biological standards to the upper limit of biological normality in the absence of any clinical anomaly). Other researchers used the measurement of 813-1355 to define "high" levels". By either definition, it doesn't sound as if my recent 630 pg/ml can be considered to be a high level of B12 in serum. Considering all the diseases mentioned in relation to high serum B12 levels, I'm glad that my latest test numbers aren't considered "high", but on the other hand it would have been an answer of sorts.

thanks, D-G-S

[Gambit62 Administrator in reply to Dopey-Grumpy-Sleepy]

the article is arguing for not just ignoring high B12 but for asking why levels are high - in your case the the injections would be the cause of high levels rather than anything else (so apologies for any alarm it may have caused) ... but its one of the few bits out there on functional deficiency.

There's a lot of inconsistency about how 'functional deficiency' gets used - most would see it as being levels that are higher than normal but many use it for much lower levels.

[xyz011 in reply to Gambit62]

I just muddled through this article. My B12 level after 12 or so weeks was nearly 4000. I thought that excessive B12 was harmless. This article seemed to indictate that the body produces antibobies to fight off excess amounts causing liver and / orblood issue???? Am I on track?????

[fbirder in reply to xyz011]

It says that high amounts can result in production of antibodies. However, this has been reported in just one person in this study - ncbi.nlm.nih.gov/pubmed/861380 - and in one patient in this study - ncbi.nlm.nih.gov/pubmed/170...

The Danish study (conducted almost 50 years ago) where 30% had such antibodies doesn't describe the study in the abstract and the full paper isn't available. I wouldn't trust it.

It also says that high levels of B12 can be found in people with liver and blood disorders, including cancer. But in these cases the high levels of B12 are caused by the disease, the disease is not caused by any antibodies to B12.

[xyz011 in reply to fbirder]

Thanks for clearing up my muddled understanding!

[fbirder in reply to xyz011]

It's not a very easy paper to follow.

[Dopey-Grumpy-Sleepy]

Gambit, Thanks for reminding me in what context the paper mentioned the illnesses - I may have overreacted a weeee bit! Haven't I seen posts from people who had readings of 1000-2000 after injections? Considering those levels, it doesn't seem that 630 is all that high (?).

The memory of feeling so great for a few days is almost torture. I am desperate to reacquire the temporary "cure" that I experienced in the beginning. Failing that, a clear understanding of it would be helpful. Maybe my neurologist will have some guesses when I see him in a week for my migraine headache check-in. He certainly reacted more strongly to my original 150 pg/ml than my GP, commenting (a) that I needed to "fire" the doctor who had ignored that number for 3 years and (b) that he often sees neurological symptoms in people with levels higher than mine, in the 250-300 range.

So, if I get any answers from the neurologist that may be useful to others, I'll post. Thanks again.

D-G-S

[Galixie]

Yes, that sounds very similar to my experiences. I wasn't offered loading doses at the beginning but was started off on once a month injections. The first one was like a hallelujah moment because I felt so much better the next day. But I found that it wore off well before the next monthly injection was due. (And of course my doctor wouldn't listen to me about needing injections more often.) Months after being on monthly injections I was able to get some blood testing done that showed that a couple of days after a 1000mcg injection (1ml cyano) my serum level was up around 1200. Three weeks later it was back down to 500. My body just wasn't hanging on to the B12 it was getting. So I went in search of a doctor who would listen and I now have weekly injections, which has made a huge difference.

You may need to remind your doctor that the point of treatment is *remission of symptoms* not some magic number on a lab test. Good luck.

[Dopey-Grumpy-Sleepy]

Galixie, have you had that hallelujah moment again? While I was on weekly injections, I felt much better and had more energy, but it still wasn't what you call the "hallelujah" moment (which describes it very well). When I had that moment, I just sat down and cried in gratitude, marveling that it could be so simple after years of suffering nearly every symptom attributed to B12 deficiency. (The doctor who completely missed the B12 deficiency 4 years ago found Chronic Epstein-Barr Virus and told me that the incurable virus was the cause of my symptoms.) In my "hallelujah" moment, I recognized myself for the first time in ages, but then lost myself again. I have to believe that I can get there again; I just don't know how!

D-G-S

[Frodo in reply to Dopey-Grumpy-Sleepy]

I've had similar experiences to you. That first 'hallelujah!' response was amazing, to feel like myself again. I was also very p***** off that I could have had this simple treatment long ago and not gone through years of struggling on a pointless 'health journey'.

Certain improvements continue, the awful 'brain fog' has cleared for one, and I am a lot calmer on the whole, with fewer muscle spasms and less pain, and find it much easier to breathe. But I haven't maintained the 'hallelujah'.

My theory is that after many years of damage, it perhaps isn't possible to effect a complete and permanent repair. But in time, things do improve to an extent and you do stop getting worse with continued treatment.

I too have migraine and (theorising again) I think it was probably made chronic and worse by damage from the B12 deficiency.

Recently I've started to use a methylcobalamin patch when I begin to feel worse, and have added in spatone iron every day, along with magnesium and B2 for the migraine. At the moment I feel quite a bit of improvement from that. I was misled by the 'normal' ferritin ranges but iron does appear to be a factor for me judging by the current improvement - although that would need to continue longer term to be sure it's working and not a coincidence.

Your neurologist sounds unusually knowledgeable about B12, so that's a big plus.

[Dopey-Grumpy-Sleepy]

Frodo, thanks for sharing your experience. I'm sad to hear that the "hallelujah" moment wasn't reacquired, but thrilled that you "cured" the brain fog. I haven't seen the patch for sale OTC, but I will mention your cocktail to the neurologist and see if he thinks it might help me. I read somewhere that migraine is a symptom of B12 deficiency...I think it might have been in the long list of symptoms at the end of the YouTube documentary about pediatrician Dave Carr who was blind, deaf, demented, and diagnosed with a rare neuro-degenerative disease before someone thought to check his B12, found it was 70, and began treatments that restored nearly all his functions. (That video should be required watching for doctors and spouses!) Thanks again for sharing.

D-G-S.