Unnatural scraping and grinding at base of skull, unnatural movement of skull

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Shellazae
New Member


Date Joined Jun 2017
Total Posts : 4
   Posted 6/17/2017 4:32 PM (GMT -6)   
Hi,
I recently received a diagnosis of Lyme disease and so did my brother. I am almost positive my really ill sister has it as well but she has no money to see a LLMD for diagnosis or treatment and is too far gone cognitively speaking to even consider Lyme. She has many common symptoms especially neurolyme. She is resistant to believing she could have this disease because one of her main symptoms is her debilitating neck pain. She has had neck surgery for crushed vertebrae (she is not sure how they were even crushed) and has to constantly be in traction (she uses a towel) or she will throw up from the pain. She has been to the ER more times than I can count and had MRI's where her doctors see no problem and basically tell her she is fine. She insists on finding an upright MRI believing her doctors are missing something in the lay down type but there are none in our entire state.

My question to everyone is this, does anyone out there with confirmed Lyme, have severe neck issues where the base of the skull/neck make an unnatural scraping or grinding noise? She thinks something isn't attached in there thus it causing unnatural noises, movement and pain, she believes her spine could be severed at any moment and she could die (there is a name for this condition but I can't remember it). We can all agree that Lyme can destroy anything, especially previous injuries but I am wanting to hear specifically from people that have this same phenomenon.

Purrrsiankitty
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Date Joined Dec 2016
Total Posts : 1387
   Posted 6/17/2017 4:46 PM (GMT -6)   
Yes. Although my pain is minimal, I have the grinding, gravelly noise. I've gotten used to it.

Please let her know others experience this.
Moderator, Lyme Forum

Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast and leaky gut

summer16
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Date Joined Jul 2012
Total Posts : 1053
   Posted 6/17/2017 5:05 PM (GMT -6)   
Yes, I, too, have experienced it. It is better now. Lyme tends to gravitate to prior injuries. I hope she can find a way to test for for Lyme disease.

Patty
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012

lymehater
Regular Member


Date Joined Jan 2016
Total Posts : 257
   Posted 6/19/2017 7:44 AM (GMT -6)   
wow i have that for sure! i assumed it was from my car accident. It took years of physical therapy to get back to somewhat normal state. had no idea lyme played a part too!

LmLyme
Regular Member


Date Joined Mar 2017
Total Posts : 206
   Posted 6/19/2017 11:46 AM (GMT -6)   
I have it also, sounds like rice krispies every time I turn my head.

astroman
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Date Joined Mar 2014
Total Posts : 3356
   Posted 6/20/2017 9:00 AM (GMT -6)   
Ahhh...yes, "gravel neck syndrome". Been there had that too.

90% better on most days the last year, had it for 20 years.

Funny how so many have these odd symptoms in common.

PeteZa
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Date Joined Jul 2015
Total Posts : 7731
   Posted 6/20/2017 9:05 AM (GMT -6)   
It sounded to me like I had ball bearings that needed lubing. I went to a chiropractor thinking I was out of adjustment.

Nope, it was all a lyme symptom. Treatment and the gnashing of bones quit.... thank the Lord. It was a very annoying sound.
____________

Good Article

Traveler
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Date Joined May 2007
Total Posts : 35211
   Posted 6/20/2017 9:14 AM (GMT -6)   
Count me in on this too - the pain can be so debilitating that I stay in bed for days at a time. The sounds that come from my neck always surprise Chiro's too - although I don't see them often, just when I can't take it any longer, which is about once every year or so.

This can be due to inflammation or from the meningitis type issues we get from Neuro Lyme usually. Throw in Bartonella into the mix, and the pain can be simply unbelievable.

That's not to mention the late stage dementia symptoms that I had for a few years due to these infections, or any number of other issues that I have.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
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Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
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Post Edited (Traveler) : 6/20/2017 9:17:36 AM (GMT-6)


borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 85
   Posted 6/22/2017 4:18 PM (GMT -6)   
I watched this YouTube video recently, an interview with Dr. Jemsek in DC

https://www.youtube.com/watch?v=WDe0L-5yKvI&t=1s

He was very specific about the spine areas where he always sees Borreliosis problems.

He was saying that the spine, especially the upper back, shoulders and neck (he even named the vertebrae) are where these bacteria like to go, and this leads to wasting and degradation. My neck where it meets the back of my head cracks loudly and often and I can't swivel my head from side to side without hearing this inner gristly sound. I had some flirtations with spinal cord injuries from athletic activities when I was younger, surfing in shallow waters for instance that had twisted my spine and made my tongue go numb inside my head, so yeah Borreliosis digs into past trauma areas I believe. I have sleep apnea now and fear deeper neuro issues, have air hunger and experience a nerve block when I try to swallow sometimes. It's alarming, part of me wants to do a heavy abx dose, the other part fears a life threatening herx (or just the feeling like I'm dying during it is dreadful.)

Anyway, stiff neck, cracking neck (unusually and often) is another classic Lyme symptom.
Bb+Co bite ~10+ years ago, bullseye rash, concussion(s)
sleep apnea, restless leg syndrome, tachycardia, chills, fevers, migrating pains, fatigue, vertical nail ridges
untreated until recently (~3 years now)
Buhner's Protocol, Doxycycline, Amoxicillin, Supplements,
Minocycline, Metronidazole, Bactrim
IgG via IgeneX 31-IND, 41++, 58+ (Sep-2016)
IgM via IgeneX 31+, 41-IND (Sep-2016)

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4037
   Posted 6/22/2017 7:18 PM (GMT -6)   
Yep c1 c5 c6 and lumbar have been effected on me ..rice Krispy for sure.now its pinching a nerve ...

Joyous
New Member


Date Joined Jun 2017
Total Posts : 12
   Posted 6/22/2017 9:34 PM (GMT -6)   
Yes.

My joints in knees are also making the same sound. It seems to be loss of cartlidge.

Stat memos need to be sent out to every ortho/neuro doc in the world about these presentations. BTW - the inflammatory processes do show up in bone scans, in case anyone wondered. It's like you can see where the infection set up shop.

Post Edited (Joyous) : 6/22/2017 9:39:08 PM (GMT-6)


Ambella
Regular Member


Date Joined Mar 2017
Total Posts : 45
   Posted 6/23/2017 7:31 AM (GMT -6)   
I have had a creaky grind start when I turn my head very recently so this is really interesting thread for me and such a weird symptom. It came just after I started getting a jaw issue and neck pain so for me this is where the Lyme is working out at the moment. An MRI showed arthritis in the neck (young female). I have been on antibiotics and herbs for I'd say 75% of the whole time\3 years I've had Lyme. So this is a hell of a persistent infection.

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 85
   Posted 6/23/2017 11:24 PM (GMT -6)   
Joyous said...
Stat memos need to be sent out to every ortho/neuro doc in the world about these presentations. BTW - the inflammatory processes do show up in bone scans, in case anyone wondered. It's like you can see where the infection set up shop.
I second this. These myopic specialist doctors, not sure who said it (AB MacDonald regarding Syphilis?) need to zoom out and see the big picture. A famous doctor said something like "to understand Syphilis is to understand every branch of medicine."

Translation: Borreliosis presents itself as a multi-systemic ailment unique to every individual. Horowitz is spot on with his MSIDS approach.

Over and out, my troubled friends!

claude783
Regular Member


Date Joined Sep 2013
Total Posts : 104
   Posted 6/23/2017 11:31 PM (GMT -6)   
It started out with just a creaking neck. Didn't think to much of it, just thought I slept on the pillow wrong.

Then came the vertigo...went to the doctors and all they could come up with was meniers. Said I needed surgery.

Would go through medical books and found one that said a chiropractor might be of use.

He did the adjustment, but still wasn't completely healed. I believe that the bacteria attacks a nerve next to the spine, base of the skull which causes the vertigo.

I had to stop my treating myself for line in Mar, and by May was getting the neck problems and vertigo began coming back. So am treating myself for Lyme "again". Believe that wife is infected and we are simply passing the bug back and forth
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