i know i posted quite a few posts regarding my symptoms lately, but am really confused as to whether or not this is a lyme relapse. I was off abx. for 15 months.
My only symptoms are (since mid December):
1) constant internal trembling/buzzing/vibrating 2) head slightly moving (bobbing) 3) ear symptoms (which have been ongoing for 2 years)- fullness, hear my pulse/blood flowing, and muscle spasm on that side that is making my head move (all in left ear). 4) sometimes feel lightheaded/spacey
I saw my LLMD a couple of times- retested through Igenex for lyme and babesia FISH- both negative. positive band 41, and IND band 31 and 39.
I saw neurologist and had abnormal EEG and he sent me on my way with antiseizure meds to take for life and said 90% of the time we will never know why. I don't even think the antiseizure meds will help any of these symptoms, so I have decided not to take them. He said the EEG showed seizure like activity, but I am not having seizures. I do get lightheaded at times.
Anyway, LLMD was not much help. She said to try abx if I want (basically) for a month and see if the symptoms improve.
The neurologist is willing to have me do an MRI, but not spect scan that some people mentioned here. I asked LLMD and she said spect scan is not necessary or recommended for me (so I can't get a script for that anyway).
I am going to get tested for B12 and D vitamin levels, but haven't made it to the lab yet.
I am only taking herbs for past month and no difference, no herxing. Have rifed a few times since December, no herxing or anything either.
I am trying to rule out other things this could be. I have an appointment end of March with ENT who was rated #1 in NJ (and there will be no mention of lyme from me) to see if ear thing could be related to this out of wack nerves through whole body.
Any ideas as to what else this could be besides lyme, just to point me into other directions to rule out other things?
It may very well be lyme, despite no herxing or my other lyme symptoms that I had before remission, and I am willing to try to treat, but want to rule out other things too.
I am taking tons of transdermal mg. and no help. even had a couple of im shots, symptoms did not stop.
Thyroid test was fine. CBC was normal.
Any other ideas on things I should rule out besides B12 deficiency, inner ear problems, and something that the MRI would show?
thanks, maureen
Posts: 871 | From NJ | Registered: Mar 2007
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posted
another thing that was strange is that EEG results were way crazy abnormal during the time i was taking deep breaths. plus while doing that during the test, I felt my whole body trembling worse than ever.
not sure what that means. i think all abnormal activity was on left side and that is why i am pursuing ear thing since it is the left ear that is the problem for me.
Posts: 871 | From NJ | Registered: Mar 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
what is your heart rate and blood pressure?
I had the pulse in the ear and my bp was high and i had tachycardia and palpataions I wnet on a beta blocker and it is pretty much gone.
also magnesium might help your internal trembling and buzzing.
not a doc though....my internal tremmors and twitching are pretty much gone after taking magnesium through IM injections that hubby gives me 2x a week. B12 shots wouldnt hurt either as your body just urinates out what it doesnt need.
Infuserveamerica.com has cheap b12 and magnesium for injection.
Posts: 3905 | From USA | Registered: May 2007
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posted
thanks for the response- do you mix the mg. and b12 in one shot?
how long after you started using mg. shots did you notice that it stopped? the reason i asked is that i tried it 2x and it didn't stop the internal buzzing/vibrations. would i have to do them awhile before noticing a difference?
the last mg. shot caused my entire thigh to burn horribly (not even right where the shot was given, but the entire thigh for 3-4 weeks, so i never tried them again! it was mixed with lidocaine and the llmd did it for me to show me how to do it myself (in my thigh). she gave me a script, but i never did try them because i was worried about the burning.
my heart rate varies, sometimes it is as high as 130, but normally around 90 or 100. blood pressure varies too, but much higher than it used to be (it was always low before), now at times it is a little high, but not too high.
how do you get tested for tachycardia and palpatations to see if you need a beta blocker?
thanks, maureen
Posts: 871 | From NJ | Registered: Mar 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
it sounds like you already have tachycardia and the pulsing feeling in your head and neck are part of palpations (according to my doc) do you have the pounding in your chest too? I didnt need to have a test, he just tried me on a low dose of propranolol to see how i did. it works great. as far as the mag goes...
I do not mix the b12 and mag, I give them seperately. My mag only stings for about 2minutes and then is completely fine. no lido needed. I have my hubby inject it in my butt, the thigh sounds painful.
It took anout a month of steady magnesium injections to stop the buzzing and internal vibrations. I get 1000mg 2x a week.
please remember that this is my personal experience and I have no human medical training!! best of luck
Posts: 3905 | From USA | Registered: May 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
My guess is you probably need to treat for parasites. They play a MAJOR role and are a much missed co-infection of Lyme disease.
This is EXACTLY what poured out of me when I started to use antiparasitic herbs and then salt/c
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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