Hambone
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I had a phone appointment this morning with my LLMD.
I had faxed a typed update with current symptoms and things that have gone on since my last visit, so he would have a heads-up before calling me.
We went over this crazy burning feeling I have in my head, abdomen and back. He said my cns is very irritated.
( He tried to tell me it was my scalp that was burning. It is not my scalp! My scalp feels fine. It is my BRAIN ( or the lining ) that burns. He went on about how the brain has no nerve sensation or whatever, but I beg to differ. All I know is it isn't my scalp. It's deeper than that. I can FEEL it. )
He is prescribing me B-12 shots, hoping this will help my CNS.
Does anybody else take B-12 shots? Does it help?
I had my B-12 tested last summer and it was almost 1,000...and I also get Meyer's Cocktails every 6 weeks or so, which has B-12.
So, I'm not really feeling adding B-12 shots will help. He wants me to give myself a shot every other day.
Anybody have an opinion about this?
Thanks a bunch Posts: 1142 | From South | Registered: Dec 2010
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penguingirl
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I am taking B-12 shots -10 mg in my thigh 3x a week.
It has been almost a month but can't tell a difference but prob too soon.
But maybe it will help you sooner so at least try it out! All I know is that my B12 levels were so low and I eat a good amoount of red meat and eggs and have taken it orally so clearly my body is not absorbing the nutrients.
I have the scalp pain too - although I know it's not coming from the actual scalp - I think it is something with the cranial nerves.
Let me know if you find any success on these shots! Perhaps I am on the wrong type of B12.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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MDW005
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I take the B-12 shots and they seem to help with the nerves in my body to stay calm. I notice within a 24 hour period much relief for this issue. The brain, oh, I do know this burn all to well. It is not the scalp it's the brain! and sometimes it feels like lava running through my entire body starting from the brain down.
Someone posted it could be amonia in the brain so I have been checking into this. There are some jernigan posts you might look up.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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Hambone
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Thank you Penguingirl
quote:Originally posted by MDW005: The brain, oh, I do know this burn all to well. It is not the scalp it's the brain! and sometimes it feels like lava running through my entire body starting from the brain down.
Someone posted it could be amonia in the brain so I have been checking into this. There are some jernigan posts you might look up.
THANK YOU for validating me ( fist bump )!!!!!!
I knew I wasn't making this up! It feels EXACTLY like hot lava running from the brain down....omg you described it perfectly.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I take the B12 shots and they help a lot with the fatigue, brain fog, and anxiety but the benefit doesn't last very long (that's why it's usually taken every 2 or 3 days).
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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posted
Daughter takes B12 shots to ease burning pain in muscles. Also helps with fatigue and low energy, so don't take them at bedtime. It works right away, but doesn't last. Try it - you might like it.
Posts: 228 | From Mass. | Registered: Feb 2009
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Hambone
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Thanks
I'm going to try it.
I just didn't understand his logic for prescribing it when my B12 isn't low by any means. If it's already around the high range, how will adding more help?
I guess we'll see. I suppose he's thinking the burning is from nerve pain and B12 will help.
Posts: 1142 | From South | Registered: Dec 2010
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posted
My B12 is always low... a sign of Babs for me.
I have lived on B12 shots now for over 10yrs. They have been my life saver of sorts.
I can tell when I'm getting low as my eyes feel like they have a film over them.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Hambone
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Ok....How do you get over the fear of giving yourself a shot?
I NEVER watch when I get an IV or shot, and can't imagine having to do it myself.
I've been trying to make friends with this needle for half a day now, practicing on an apple.
Just can't bring myself to do it. Have you SEEN how BIG these needles are?
Any tips?
Posts: 1142 | From South | Registered: Dec 2010
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Razzle
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Maybe try getting smaller needles?
I have used insulin needles before, because if the stuff doesn't make it into the muscle it is ok. And the tiny insulin needles don't hurt nearly as much. I also have really small arms (my shots are given to me in the upper arm...I can't do them myself because my hands are too shaky).
Good luck,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Hambone
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quote:Originally posted by Razzle: Maybe try getting smaller needles?
I have used insulin needles before, because if the stuff doesn't make it into the muscle it is ok. And the tiny insulin needles don't hurt nearly as much. I also have really small arms (my shots are given to me in the upper arm...I can't do them myself because my hands are too shaky).
Good luck,
Good idea. I know I sound like a big baby, but I've had needle phobia all my life.
My daughter's bf has diabetes and his needles are sooooo tiny compared to this thing.
I wonder...would sublinguals work just as well?
Posts: 1142 | From South | Registered: Dec 2010
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penguingirl
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My B12 shot needles are so tiny and thin - like 1/2 inch tops? It is just like a little pin prick.
Did you ask your compounding pharmacy if there are smaller needles? maybe they have other options.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
I've been using an insulin syringe with ultra-fine needle to give myself the B12 shot. I hate needles too and understand what you're saying.
My doctor told me if I couldn't get hubby to give me the shot in the arm, I could give it myself in the thigh.
I get everything ready, pinch up the skin/fat/muscle, pray and do it. The B12 makes me feel better.
You can do it. Just don't think too much. After the first time you'll be ok.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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merrygirl
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25g needles work just fine
Posts: 3905 | From USA | Registered: May 2007
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Hambone
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quote:Originally posted by penguingirl: My B12 shot needles are so tiny and thin - like 1/2 inch tops?
Mine are a solid inch.
Not gonna happen.
I will call the pharmacy tomorrow and see if they have smaller ones.
Posts: 1142 | From South | Registered: Dec 2010
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posted
i give my b-12 shots in the belly. they are the tiny insulin ones. the belly hurts the least , cause there are no nerves there. to the left and right of the navel. b 12 shots do help me, and my level wasnt low either. joanie
Posts: 8 | From brick, new jersey | Registered: Oct 2009
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Hambone
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quote:Originally posted by joanierav: b 12 shots do help me, and my level wasnt low either. joanie
This is good to know. Thanks Posts: 1142 | From South | Registered: Dec 2010
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I was given methylcobalim shots 10,gs 3x a week (it is the strong portion of b12). They are from the compound pharmacy already made up and the needle is very thin and only 1/2 inch
I do not even feel it going in at all. I just sit and to it to the side of my thigh. I was told imagining a line down the middle of your thigh and giving the meds on the outer part of your thigh, not the inner where the fat is. It needs to go on the musclar side of your thigh.
It has helped me sooo much with fatigue. I no longer need naps, or very rarely, since I am on them. My b12 was up to normal using sublingual tablets twice a day but my LLMD felt my nervous system needs the methyl boost to restore itself. I have many neuro issues and it helps a lot.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Pinching the skin/fat is a good thing to do. I give mine in the waist/upper butt area on my backside.. towards side. I twist around grab the fat, and whalaa... it doesn't hurt when you have the fat all pushed together! lol..
Really... it's only a half minute and you're done.
Get the little alcohol wipe thingys... and I was told to put the needle into the skin far enough, as if you don't you could get the discoloration toward the top layer of your skin after awhile.
You can do it... you'll feel SOOO much better!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I am with you on the burning head pain. That is exactly what it feels like- my brain is sizzling like its on a frying pan. Fun stuff.
I also take B-12 shots 1x/week, I do not feel its really helping the burn, but it does seem to help my energy (may be placebo but I don't care)
Yes, you can go with a smaller needle, I use 22-25 guage, but even better, get EMLA lidocaine patches!!!!! put the patch on one hour before you give the shot and it completely numbs the area and you won't feel the needle go in the muscle. I do it on my thigh. YOu can get these from your Dr or order them without a prescription from Canada.
Lifesaver!!!
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