Anyone get B-12 Shots?

Discussion in 'Fibromyalgia Main Forum' started by jennah, Mar 21, 2009.

  1. jennah

    jennah New Member

    Hi all...

    It has been a very long time since I have posted (a couple of years), and it is a nice comfort to find that the community is still here in my time of need.

    So I am in the flare from h*ll. It is pushing about 6 weeks long now and the fatigue & cognitive functioning has been so bad that I have not been able to work at all. I am self-employed and most likely have even now put myself out of business.

    My pain has been at its normal levels for the most part, really no worse than what I normally struggle with except for an occasion or two. It is the fatigue that has has caused all the trouble and it seems my brain has decided to just completely shut down like it is too tired to deal with anything at it just doesn't.

    My question is that when I saw my dr. last week, she told me to get a B-12 shot before I left and maybe that would help with the energy some.

    Well it did did miracles for me; after a few hours I felt fabulous, normal again and was able to have energy to pull off a 3 hour shopping trip that evening compared to barely making it to the corner store for the past two months.

    The changes were absolutely profound. I have many issues with my stomach and lack of appetite; I struggle with this normally and ofcourse more so when in a flare. The afternoon of the B-12 shot I proceeded to eat all day with non-stop hunger.

    I also did not reach for a cup of coffee all day long (I am normally a huge coffee drinker). It was about 9:00pm when I realized I had not had a cup of coffee since the morning and it had not crossed my mind all day to have one.

    Unfortunately this fabulousness was short lived and about 36 hours later I fell back into the hole of fatigue....were I have continued to be stuck all week long.

    I am wondering if this is all quite a normal reaction to a B-12 shot, or if maybe I actually have a B-12 deficiency and that could be the culprit to many of my ongoing troubles. I was hoping that some of you who may have had B-12 shots could share their opinion with me and their experience on what they felt like after getting the shot.

    Thanks so much--
    [This Message was Edited on 03/21/2009]
  2. elliespad

    elliespad Member

    Hi Jenna. I have very low B-12 levels and am supposed to take 2 injections per week. (I often go a month or more cause my brain is so forgetful) When I first started them, maybe a year ago, I saw a good improvement in my mental confusion. Never saw an improvement in my weakness, fatigue or endurance. I am allergic to yeast so I have to get a type grown from Bacteria, rather than yeast.

    I know it is common to give elderly people with poor appetite, B-12 injections to boot their appetite. So your experience with increased appetite sounds normal.

    You might want to get your B-12 levels drawn and ask your Dr. to give you a script to buy the injections and give them to yourself. Mine come in preloaded syringes and cost me $5 each. I do mine in the thigh, very easy.

    They are to be kept refrigerated until ready to use, but I find they sting if given cold, so I take one and warm it under my breast for 1 minute and that seems to help.

    Interestingly, I have been unusually sick today, migraine, short of breath, strangely low BP, and I took a B-12 injection today from a new batch. Hmmm. I wonder if they gave me the right Rx. I also just filled my Hydrocortisone yesterday, and was shorted 10 capsules. Grrrrrr.

  3. jennah

    jennah New Member

    Thanks for the reply,

    I was not aware it was used to boost appetites, so that does explain that part of my definitely does work in that aspect, lol. I think I ate more that day than I normally eat in an entire week, lol.

    I am suppose to see my dr. in a couple of weeks, however the nurse that gave me the shot mentioned if I felt I needed another to go ahead and stop in next I will definitely be calling tomorrow to just stop by for another shot.

    I will be requesting to have my level tested when I return for my follow-up appointment, although I did wonder if I was getting the shots and taking supplements (I picked up some of those sublingual dots yesterday) if it would raise the levels by then and then I would never know if I was low to begin with or not.

    Thanks for the advice about getting my own script for them; that would be ideal. Although it felt so fabulous to have energy again, it really made me depressed when the fatigue returned (depression is not usually something I struggle with). It was like a had a small window of what a normal life was like and then it was gone, and although the fatigue was no worse than it was prior to the shot, it felt worse because I had the reminder of what it felt like to feel good for that day.
  4. spacee

    spacee Member

    For 16 years I took high doses of B-12 with my kutapressin shots. Dr. Cheney recommended 10,000mcgs daily (yes) but my pcp and I settled on 5,000 mcgs three times a week. Then kutapressin wasn't made any longer and I took the targeted transfer factors which worked better than kutapressin. So, I stopped the B-12. I was really tired of shots!

    But now I will go through a bottle of b-12 a couple of times a year. This is how my pcp orders it for me.

    He gives me a rx stating: Hydroxy-b12 10mg/ml Inject 1ml daily as directed 30ML (I just realized that really like the Methyl. that I used for the 16 years

    This is one month at 10,000 daily. It cost about $60. My insurance does not cover injectables.

    I chose a compounding pharmacy (there are tons of them) and set up an account with them with my cc. I mail them the RX and tell them to send the syringes too (I use 1cc allergy syringe...Dr. Lapp is ok with that kind of syringe...Dr. Lapp was Cheney's partner when I went to him and he suggested the b-12).

    They send it back with instructions to refrigerate and keep out of light.

    Now that I am thinking about it, I think I will drop back down to the 5,000 three times a week. That seems good for my body. And it is cheaper.

    This is the pharmacy that I use:

    Medaus Pharmacy
    6801 Cahaba Valley Road, STE 116
    Birmingham, AL 35242

    There use to be a page here where the docs had their recommendation and one could print it off and take to their doc. I think they still have it but I haven't looked. Look at Cheney and/or Lapp.

    [This Message was Edited on 03/22/2009]
  5. spacee

    spacee Member

    But I found some.

    Go to homepage and click on library. Type in Cheney on the search (the one for library...there will be a 2nd search on the page but don't use it).

    Count 4 (darn. or is it 5) of the blue bars down. There you will see the 2nd article written about B-12 by an RN quoting several of the CFS researchers on B-12. You will find very interesting info there.

  6. spacee

    spacee Member

    But I found some.

    Go to homepage and click on research. That will take you to the library. Then put in Cheney and b-12. I found a great article written by an RN discussing the CFS researchers who like high b-12 and why. But when I go back to the library it pulls up different info each time...???

    I also noted that over the years Cheney has changed from using cynobalmin (it has cynanide in it and it ok at lower doses), to methlybalmin. And I think now the hydroxy. I have used both and I think I liked the Methy. better. That thought just came to me now.

    The old site was so much easier!!!

  7. ladybugmandy

    ladybugmandy Member

    this is exactly what happened to me when i got my 1st b-12 shot. felt normal and had no brain fog for the 1st time in 15 yrs!!! i was jumping up and down...but it only lasted a day.

    now i am on antivirals and am a little better.

  8. I get them monthly but don't notice any difference, I am always dragging.
  9. I did B12 shots, (once a week), for about 6 months, along with glutathione IV pushes 3 times a week, at the orders of Dr David Perlmutter, whom I flew to Naples to see, at the urging of my integrative doctor.

    I never had any reaction to them either, like fibrobutterfly...

    Sure would have loved to though! Glad you had such an awesome day!

    I'm sure many others here like myself, though, *have* maybe had a day or so like that, (after a new med, treatment, etc), but, for me, they are *never* reproduceable. unfortunately.

    I hope for you, that isn't the case, hope you get a flying boost every time! :)

  10. munch1958

    munch1958 Member

    This has entirely eliminated my fatigue problems. I do 1 ml of 25 mg/ml of methylcobalamin every day IM. I've tried to lower the dose but the fatigue comes right back. I get mine from Bellevue Pharmacy Solutions in St Louis and my insurance covers it so I pay $25 for 6 vials and $10 for 100 syringes.
  11. jennah

    jennah New Member

    its interesting how some of us can feel the effects and benefits from the shots, and others don't feel anything.

    I am normally extra sensitive to medications, so it won't surprise me if I the initial greatness I felt from the shot eventually fades away with future shots.

    I started a script of Wellbutrin, very low dose, last Tuesday....I can never tolerate the SSRI's so I requested trying this one hoping I could tolerate it and that it would give me some energy that I read it helps people with. A sleeping pill has been added in now to try and get me on a normal sleep schedule and yesterday I could finally feel the fatigue start to lift a bit. So I hope I am on the road to pulling out of this flare. I can cope with the pain daily most of the time, however the overwhelming fatigue just wrecks my world when it sets in.

    I am definitely going to pursue the B-12 shots though and am very interested in being able to do them myself at home; so thanks all for the input, info and links to the articles. I think I will bring is some printouts of this thread and some articles after I research them to my dr. and hopefully she will be agreeable to it.
  12. deliarose

    deliarose New Member

    I do 2ccs of hydroxocobalamin 25ml/mg DAILY.

    Insurance covers most of it.. (after a bit of back and forth and years of paying out of pocket for b12 from compounding pharmacies.)

    I believe that methyl is the kind of B12 we need for our condition. See the work of Rich Van Konynenburg.. but I am too worried about the methyl B12 and mercury risk and neurological damage. (Again.. if this isn't familiar, see Rich's posts on this board .. username richvank.. or see his papers on the phoenix rising site.)

    I assume the reason why people aren't seeing much effect after an initial boost is coz the hydroxy is being scavenged.. hijacked by toxins.. so the body can't use it. It gets chewed up by all the toxins we have accumulated.

  13. spacee

    spacee Member

    I am always glad to read people's experiences to things and particularly something that has helped me in the past, I have dropped and might need to revisit again.

    I had to lie to get my first b-12 shot. (only 1,000mcgs) I told my gyn that my ID doc (who was on a leave of absence) in another city wanted me to have them. I was so tired, I would be lying on the couch in his waiting room feeling rather teary eyes. 20 minutes after the shot, I was much perkier. Not well by any means but not teary eyed and able to run some errands.

    The higher dose definitely made me more stable. It is always a toss up to me as to which kind of B-12 to use. The pros and cons of each.

    I had never heard of 25 mg daily. Wow! Interesting!

  14. deliarose

    deliarose New Member

    I asked my pcp to rx b12. she said what do you want, so i made up a figure.. turns out the pharmacy can make that strength and insuracne will pay for it...
    Who knew?

    As you know, rich thinks the methinone synthase enzyme needs b12 and folate to function.

    I would not be without it. When I take the methyl supps these days, it feels like it's raining in my head. I find it hard to concentrate and kind of spacey, but I also feel more present and "on" than normal. And overall, I am making solid progress. It's night and day compared to a couple of years ago.

    Spacee: I saw on another thread that you are considering valcyte. But why not try the methylation protocol first? You've already noticed you respond well to one methyl donor.. sam-e. you've responded well to b12 in the past.

    It's cheap. It's simple. You can order the stuff without a doctor & you can always add antivirals later. I plan on doing valtrex. I just wanted to build up my immune system first, so I can actually eliminate some of the virus when I get to that point.

    Also, a $300 test will tell you if you have a methylation cycle block. It's the best $300 bucks I ever spent, better even than my $200 Dolce and Gabbana cow-hide purse that I've used like 3 times tops....


  15. ladybugmandy

    ladybugmandy Member

    there is also adenosylcobalamine and hydroxycobalamine, which you can get at a compounding pharmacy.
  16. shari1677

    shari1677 New Member



  17. Jayna

    Jayna New Member

    That's how I got my current doc to prescribe for me. First I took my husband with me to an appt, and got him to tell her how brightened up I get within minutes. Then we talked her into writing just one prescription and giving me the shot in her office next visit so she could see the instant improvement for hersself. AFter that she was good with teaching me to give the shots myself at home.

    The glow does wear off, but it's great while it lasts. Like having my old life back for 24 hours. Always hard to not over-do when I feel that good, but I remind myself that this is cleaning up toxic waste in my body on a fundamental level and I should respect that process.

    Also, if you take steady shots, eventually any nutritional deficits will start to cause symptoms as the nutrients (vitamins, minerals, fats) get used up cleaning up the toxic waste from our malfunctioning mitochondria. Paying attention to your particular dietary and supplement needs will help you get the best out of the shot over the longer term, even though the glow wears off after a day or two.
    [This Message was Edited on 03/24/2009]
  18. spacee

    spacee Member

    When I got a weekly shot, I got it on Friday and it helped for that night and the next day.

    Dr. Lapp says that it is essential to take all your other B vitamins when taking b-12 shots. I think about everyone recommends a good daily multi. too. And then there are the minerals, the EFAs, the EAA's....this list goes on and on.

    But Lapp did say the B complex.

  19. jennah

    jennah New Member

    Well I called the nurse at my doctors and explained the miracle experience I had from the shot last week and she said to come on down and get another.

    I did just that, lol, as fast as I could get there. I laugh because it actually was like I felt like I was drug seeking for a B-12 made me feel that good and I couldn't wait to get another and have some relief from this awful fatigue.

    Unfortunately I did not have such a profound feeling of fatigue relief this time, however I do feel some relief so I will definitely continue with them. Any bit of relief is a good thing, no matter how small I guess.

    I did ask her about having them prescribed to do at home, and she said she would talk to the dr. and get me set up for them; only she did mention I could do them once a week and I didn't push it for daily (even though I think at the end of the day I will probably end up needing). She said to stop in next week for another shot and she will teach me how to do it and hopefully will have me set up to do them at home.

    I do have an awful bruise from last weeks, and I sure my other arm will bruise up bad (I am very pale complected and bruise easily), but I don't care if my arms and thighs end up covered with bruises as long as I can at least semi-function and have part of my life back.

    I do need to start up my supplements again and I am sure that will help even more; I tend to slack on them as my stomach causes me so much trouble and sometimes it seems like some of the supplements tend to make that worse. Maybe with the B-12 shots my stomach will ease up a bit and help with getting more vitamins back in me.
  20. lyzzy

    lyzzy New Member

    I take a B100 complex supplement, and wonder if I would be better off taking the B12 shots. Anyones thought on this. I see my doc in a couple of weeks and will mention it. Do I need blood levels checked?