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» LymeNet Flash » Questions and Discussion » Medical Questions » lyme menengitis/very stiff neck/pressure in rear of lower head/neck

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Author Topic: lyme menengitis/very stiff neck/pressure in rear of lower head/neck
djf2005
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hey guys-

i have made a lot of progress in the last 4 months of treatment.

BUT, the above symptom is still hanging around full force, and i am not only getting very frustrated, i am getting worried.

has/does anyone else had this for an extended period of time?

its driving me NUTS!

it gets worse when i try to do anything. the severity comes and goes but its always there.

my brain fog (visual & mental) also gets worse or better depending on how bad this symptom is acting up

when i try to turn my neck from side to side, i have limited movement with lots of pain

it feels like the actual muscles are inflamed.

i was treated for lyme for 4 months now babs. (currently mepron & zith)

if anyone else had this as a primary symptom, what helped?

should i be worried because i have had this symptom off and on since early this year?

help help help thanks!

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
savebabe
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Yup, had this symptom when my lyme was very active.

IM bicillin shots were the only drug that helped this symptom.

Feel better.

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
pamyla
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Hi, I have the same issues with my neck, it's been one of my worse symptoms. I'm currently on my 2nd round of treatment for babs. My doctor said the really bad neck pain comes with babs and rocky mountain. Like you, the pain is always there to some degree, but I do have flares where I can barely move my neck.

I've found that the only drug that really helps my neck pain is the plaquenil. For awhile I was trying to wean off it, and my neck got much, much worse. Even with it, it often hurts a lot, but is more tolerable. The only other thing I've found that helps me is heat. I recently bought one of those neck wraps that you can put in the microwave to heat up, and I use that all the time.

Hope it gets better for you!
Pam

Posts: 60 | From Northern Va | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
BOEJR
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Hi DJF,

Sorry to hear that you are still suffering with the stiff neck. The heating pad is a great idea because it will help to loosen the muscles.

It won't do a thing for the cause but it will give your muscle a break.

Have you checked your magnesium levels? Lyme loves Mg so you may have a deficiency.

Blessings to you and your family,

Julia [hi]

--------------------
Please consult your LLMD before making any changes to your treatment regimen.

Posts: 641 | From NJ, USA | Registered: Oct 2001  |  IP: Logged | Report this post to a Moderator
randibear
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i actually went to a surgeon and was considering having fusion. thank heavens, i didn't.

by the way, what makes your neck so hot????

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
salydega
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Hi DJF;

I posted a couple weeks ago regarding this very topic. I have reaccuring menengitis and I can completely sympathize with your pain.

I think the difference with your pain versus mine is.. When I truly am having menengitis bouts, my neck is stiff but I have extreme headache and head pressure.

During this time, I wish I could drill a hole in my head and relieve the pressure.

When it eases up,, and I get a little better. I dont have much neck pain but still have daily headaches.

My PMD says this is from the inflammation/swelling of the lining of the spinal column and brain.

For me,, after a week of abx I do feel better. But still have daily headaches not as bad though. But as soon as I stop abx it comes back fast.

I also use the heat on the neck, that does relieve some pain, along with pain meds.

Hang in there!! I feel much better than I did two weeks ago

Sandra

Posts: 73 | From phoenix, az | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
groovy2
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Hi DJF

Babs caused me to have a super stiff neck for
15 years --Was Hell--

Babs treatment made it go away--AAhhhhhh

Babs symptoms can take a long time to get better-

Make Sure to take the mepron with Fatty food --
it makes a Huge differance --Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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I get chiropractic care and have done so from the get-go. It doesn't solve the problem but relieves the pain temporarily and gives me a break.
Posts: 13041 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
humanbeing
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IV may be needed...some say when the ketes are that deep in the nerves only IV can get in there...

I had improvement on rocephin IV an zith IV.

Good Luck, it will get better---takes a long time.
Kim

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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Geneal
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I get that super stiff and cracking painful neck with my babs symptoms too.

When one of my children screams my name and I respond by looking at them

The quick turning of my head/neck is excrutiating.

Hugs,

Geneal

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buckfever
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Sorry to hear soo many of you have to deal with this too !! [bonk] Wish I could give you some advice on some relief , but I haven't found a reliable way , except to take 3 advil every hour , so I just try to deal with it . Heat and lying flat does help but its just not very practical if you have to function ! By the way , I have lyme , babs (at least) also ! Sounds like it comes with the territory .
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
djf2005
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thank you all very much for your responses.

i greatly appreciate them

pamyla-

i have not yet tried plaq, maybe i should. i just started zith w mepron though, so i have another 3-4 weeks of that before my llmd will change something else

julia-

thanks for the heating pad idea, i will do that. ive been using ice packs until now, maybe heat will help too

salydega-

i know what you mean. ive had the head pressure and all that too. i just hope it doesnt slowly come back. it is by far the worst symptom from lyme in my opinion. i have the constant headache too which i can deal with, just not the pressure too. ahhhhhh

jay-

i take it with cocnut oil, 20 g fat. this is enough, right?

robin-

i also do chiro care, 3X week. it does help

humanbeing-

i was on iv abx for 3 months. ins ran out, i cannot afford 1000 a week for abx. i will go back to them if i need to, but for now i am going to see what this treatment does. it is a crime how expensive iv abx are!!

buckfever-

you are from west chester huh? i am too. born & raised? who's your doc? what part of west chester are you in?

thanks again [email protected] [Big Grin]

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
merrygirl
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I am on Iv Rocephin with 4 days left of my 21 day TX. My neck is still killing me and my back too. I cant stand it.
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liz28
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The only antibiotic combination that worked on my neuro Lyme was omnicef and telithromycin (also called ketek). It can have serious side effects, so you may wish to research it first.

The only drug combination that worked on my babesia was chloroquine followed by primaquine. I needed three rounds to get rid of the babesia.

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