i have had the best 3 week stretch since i got sick. 80% of the time I feel 80% of my old self. i know not to get too excited and im probably jinxing myself.
i did want to say that my gf has been giving me b12 injections once every 5 days since this good run has started. i also had a great week a couple months back after getting one at my LLMDs office. i was planning on getting them 1 a week but started to feel not so good so did it early and went on another good 5 day run. as a result i just keep doing them every 5 days and so far so good!
it may be because God is healing me or it may be because treatment is working or because im just in a good stretch or because my lower abx isnt making me herx and as a result im actually not getting better. however i never had this good a run since i got sick in september. im filled with hope waiting for the crash. even if i stay like ive been for the last 3 weeks i can live this way. id rather be myself but i see others on here who are so sick.
btw those who havent tried it themselves the b12 shots are so easy to do.
Posted by jkmom (Member # 14004) on :
I agree. I was taking B12 shots for a while and noticed I felt better than ever during that time. I'm not sure it was the B12 instead of just my treatment at the time, but I am back on them again to see if I can get that feeling back.
Posted by keltyl (Member # 14050) on :
I take a B12 shot everyday, but really can't tell if I'm getting any benefits. I think I'm too long and far gone for anything to help.
Posted by Lymetoo (Member # 743) on :
They do help! I hope you continue to improve junkyard!!
Posted by cactus (Member # 7347) on :
Great news! B12 shots were a huge help to me, too!
Posted by Maradona (Member # 24552) on :
It helps even more if you add B6 to that IM or IV.
Posted by WildCondor (Member # 434) on :
Methyl B12 is far superior to cyanocobalamin. It makes a huge difference in energy, cognition and stamina. Posted by solar (Member # 26078) on :
Do you have to have a prescription for b12 shots?
Posted by jkmom (Member # 14004) on :
Yes, at least for the methyl B12.
Both my old and new LLMD's gave me a prescription when I asked.
Posted by solar (Member # 26078) on :
and then you can inject them on your own? Is the injection site in fatty parts?
Posted by lyme in Putnam (Member # 11561) on :
Posted by hadlyme (Member # 6364) on :
I agree... B12 shots are my 'life saver' I have been giving them to myself now for ten years. They have kept me going more than anything else I have taken. I give them to myself in the fatty part of my waist/hip line towards my back. Easy and quick! Yes, they are prescription.
Posted by WildCondor (Member # 434) on :
Yes, you need a prescription for both kinds of B12 shot. Regular B12 you can get from any pharmacy. Methyl B12 has to be compounded and kept in the fridge. You inject yourself every morning with Methyl B12, usually 1x per week with the regular B12.
Have a doctor or nurse show you how to do the shots. It's ridiculous to pay someone to do them for you when it costs pennies and is covered by insurance.
Posted by LymeXtu (Member # 24590) on :
I was wondering if all of you got relief right away or if it took a couple of the shots to notice improvement ?
I just had one last week and only noticed a slight improvement ?
I had the Methyl B12
Posted by Dawn in VA (Member # 9693) on :
My LLMD said improvement with CNS shows at around 3 months; was right on target- it did take about 2.5months for me to see CNS improvement (mood stabilizing, less "twitchy" muscles, etc.)
I don't know about the energy stuff, though b/c that's not been a big issue for me.
I have my hubby do my shots b/c the fattest part of my body are upper sides of buttocks and I can't reach them on my own. I have, however, seen others give themselves shots near thigh/hip area and in the "flabby" part of upper arm.
I agre with Condor- have a nurse show you how to do it then do it (or have someone else do it) at home. The only two things I was told was: a)give in fattiest muscular-type area and make sure you get good penetration b)watch out for veins and major nerves so as not to inject directly into either; must inject into muscle
(personally, I also always alcohol the site and the needle beforehand with prep pads)
Posted by kellephant (Member # 24885) on :
i'm happy for you
b-12 shots help me too! i take them twice a week, but i might start taking them everyday soon...
Posted by lmz1100 (Member # 15487) on :
Does anyone mind sharing how much they cost, and is this a shot that you do every day? I am very interested in this. I have heard great things about B12 shots.
I have a friend who sees a weight loss doctor and takes meds for it, don't agree with that - but anyway she gets B12 shots and she says they are fantastic.
Posted by sunnydays (Member # 25310) on :
Junkyard Willy,
Sounds great! Congrats!
Maybe God is sending you the B12 shots and the doctor who prescribed them and the pharmacy that prepared them just when you needed it most.
I'm assuming yours are the methyl B12? Do you know?
I find that they do help me somewhat. And they do seem to work after the first shot, but there is kind of a cumulative effect after doing a few in a row (over the course of a couple days).
For me, it isn't a miracle that has brought me to 80%. I'm at 40% of my old self, and it has given me back maybe only 5-10%, so it brings me to about 45-50% on the days that they help. But that is nothing to sneeze at.
Posted by WildCondor (Member # 434) on :
$10 for a large 30 dose bottle of B12 (cyanocobalamin) by Rx
separate Rx for the syringes and needles
Methylcobalamin (compounded) is about $99 for a 30 day supply, you can do them every other day so they last 60 days. Includes needles and syringes pre-filled. Fallon Wellness Pharmacy, Latham NY (they ship wherever you need, they just need your Rx) usually has the best price.
Posted by JunkYardWily (Member # 24271) on :
i think i take the normal b12 didnt know there was a difference. ive heard they are good for CNS and that is where i have my main problmes along with feeling sick a lot (toxins maybe).
i didnt do them for the longest time because i thought they would be difficult but not my gf is good at doing it and its done in a few seconds. well worth a shot to me.
i notice improvement within hours. mostly i get them when i start feeling poorly and i dont get full blown sick/weak/neuro problems.
be advised though this could be only because of a good run (we go through so many ups and downs with lyme) or treatment progressions.
Posted by Dawn in VA (Member # 9693) on :
I've gotten them from Wellness and from Hopewell Pharm. I get the pre-filled syringes b/c the bottles tend to have preservatives added. If you don't want them added, be sure to ask for it that way when you get it filled.
Posted by 'Kete-tracker (Member # 17189) on :
My LLND had me doing 5000mcg shots of methyl B12 (1 ml injections) every 3 days- back when I was doing some major recovering in the winter thru early summer of 2006. I feel it definitely helped some with energy levels, sleep & certain "neuro" symptoms. Discontinued it that July as my energy was back & my PCP now thought the risks (possible injection site issues) outweighed the benefits. I stayed on oral abx thru the following January though.
I still have a little 1/2-full bottle of this "methylcobalamin" in the frig. Don't know why, as it's long expired. Maybe I thought I'd experiment with it. Ha! (It DID turn my pee a nice mango orange! )
Posted by jalama (Member # 14600) on :
Do you inject into the fatty part or into the muscle? I thought the doctor said into the fat layer...
Posted by twinkle (Member # 16287) on :
B12 surely did help me. I quit for a while, but have recently started back because my brain fog is worse.
My LLMD said after wiping the injection spot with alcohol, to squeeze the flesh and inject into the raised part. (I'm guessing so you don't hit a nerve or vein; I've hit a vein when in a hurry.)
I wait till the alcohol dissipates so the injection doesn't sting. I find it easier to inject in sides of my upper thighs, alternating legs. I started with daily shots for a month and now every other day.
'Kete-tracker, would you mind sending a PM as to who your LLND is? Thanks.....
Twinkle
Posted by hadlyme (Member # 6364) on :
Jalama, I inject it into the fatty part of my waist/hip line towards the back.... as far as you can reach back there.
Just like Twinkle stated... I pinch a bunch of fat tissue and inject there while squeezing it raised up. I alternate sides each time.
Posted by jalama (Member # 14600) on :
I was so excited to start the B-12 shots and so far I've done 3 days of shots and I've noticed a big increase in anxiety and also some insomnia. The anxiety is a little too intense. Has anyone else experienced this as a side affect? I don't think I can handle it... Argh!
Posted by kday (Member # 22234) on :
jalama -
This is not uncommon. B12 can initially cause excitotoxictity if your methylation cycle is impaired (you're probably not a good detoxer). In time (several weeks perhaps), you should feel better than when you started, and it should improve detox and even inhibit excitotoxicity.
If you can stick with it, B12 will probably help with time.
It may be easier to start with sublingual tablets. Jarrow makes them in 1 mg pills. Put it on your upper lip and let it dissolve for about an hour.
Some people can't handle methylcobalamin (I think there are certain genetic mutations where the methyl form is actually contraindicated) or can't stick with the initial excitotoxic response. Some people do better with hydroxocobalamin or adenosylcobalamin.
I would avoid cyanocobalamin because of cyanide. Most countries don't use cyano anymore, but for some reason that I don't understand, it's the most commonly used form in the United States. It's also the worst form. You wouldn't take the cyano form every day, and for B12 to have pharmacological type effects beyond raising B12 levels (i.e. restoring methylation, correcting neuropathy, inhibiting excitotoxicity), you really should take B12 at least every other day (every day is better and necessary for many including myself).
You can google methylation block protocol if you want to find out more information.
Posted by twinkle (Member # 16287) on :
good info, thanks. You just gave excellent reasons for switching to methyl, which I will do. Good to know about what's going on in those other countries for comparison.
Twinkle
Posted by karenl (Member # 17753) on :
If you are not getting better on B 12 you need Hydroxy B12.
Some people cannot take other B12. It depends on COMT/ liver.
You have to ask for the Hydroxy B12, most doctors do not know about it.
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