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

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Date Joined Jun 2017
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   Posted 6/17/2017 3:32 PM (GMT -7)   
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.

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   Posted 6/17/2017 3:46 PM (GMT -7)   
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.
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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

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   Posted 6/17/2017 4:05 PM (GMT -7)   
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.

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

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   Posted 6/19/2017 6:44 AM (GMT -7)   
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!

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Date Joined Mar 2017
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   Posted 6/19/2017 10:46 AM (GMT -7)   
I have it also, sounds like rice krispies every time I turn my head.

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   Posted 6/20/2017 8:00 AM (GMT -7)   
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.

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   Posted 6/20/2017 8:05 AM (GMT -7)   
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

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   Posted 6/20/2017 8:14 AM (GMT -7)   
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
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)

Regular Member

Date Joined Feb 2017
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   Posted 6/22/2017 3:18 PM (GMT -7)   
I watched this YouTube video recently, an interview with Dr. Jemsek in DC


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

Regular Member

Date Joined Jun 2017
Total Posts : 82
   Posted 6/22/2017 8:34 PM (GMT -7)   

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)

Regular Member

Date Joined Mar 2017
Total Posts : 45
   Posted 6/23/2017 6:31 AM (GMT -7)   
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.

Regular Member

Date Joined Feb 2017
Total Posts : 115
   Posted 6/23/2017 10:24 PM (GMT -7)   
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!

Regular Member

Date Joined Sep 2013
Total Posts : 142
   Posted 6/23/2017 10:31 PM (GMT -7)   
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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Date Joined Jun 2017
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   Posted 7/15/2017 11:59 PM (GMT -7)   
Do you all have crushing pain with it?

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   Posted 7/16/2017 8:12 AM (GMT -7)   
My LLMD calls it "Lyme neck". I've had neck stiffness my whole life. I've also had two fender benders and one T-bone crash - I got whiplash, but with time and chiropractic care, I saw good results. When I started treating Lyme, it all came back. My neck is constantly stiff, hurts, grinds, cracks, clunks, is inflamed. All of it. It even causes dizziness.

As for your sister, you can lead a horse to water. I have a friend I suspect has Lyme and she refuses to get checked out. She's been diagnosed with some rare disease, treats that and doesn't see any improvement. Her life is miserable. I figure, just get it over with. Cross it off the list.
*42 yo - Treatment started Nov. 2016 - Bitten by mosquito in Paris 2013
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Date Joined Mar 2014
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   Posted 7/16/2017 11:50 AM (GMT -7)   
There are lots of newbies here, so maybe I wont sound like a broken record to all:

In addition to killing the little buggers, you need continuous muscle release of the neck, shoulders upper back, upper arms to get circulation going, they are all conected - this is actually muscle detox. Then apply magnesium oil or cream afterward. This actually works when repeated enough, you can do this yours self after a while too. Doing nothing usually results in nothing.

My neck is a lot better 90% of the time. It used to be stuck daily. Chiro did minimal, muscle release did a lot - new nutrients to heal. Muscle tension on joint will tighten joints to make it seam like a joint problem. I had the minimal joint material (forgot the term) per X rays too - many people have this and it doesn't matter much in most cases.

It does take time though, sooner you start the better.

Regular Member

Date Joined Jun 2017
Total Posts : 48
   Posted 7/18/2017 12:20 AM (GMT -7)   
Yeah, my sister is somewhat resistant to looking at Lyme as a possibility because it's hard for her to see anything through her pain. She thinks she has the answer and can't believe anything so painful could be anything but the most obvious. She is constantly in the ER thinking she may die with one wrong move of her head. I feel so bad for her. Her dumb doctor just gives her pain meds instead of looking at any other possible causes, I am sick of it. She throws up, sweats like mad, has systemic candida, urinary symptoms etc, etc, etc. I have made an appt for her to see a LLMD at the end of Aug so we shall see. Her cognitive dysfunction and anxiety is horrible, so hopefully I can get her to answer her door on the day of her appt. wish me luck.

Astro man, what do you mean continuous muscle release? Like traction or massage? She can only get relief from traction (she does this with a towel all day long).

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Date Joined Mar 2014
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   Posted 7/18/2017 10:39 AM (GMT -7)   
Lyme does seem to tighten up many peoples muscles. Although killing the critters is important, manually loosening (releasing) muscle tension is important and not done enough.

Things to goggle and watch on you tube: : trigger point release, Active Release Technique, myofacial release- all methods to relax (release) chronic muscle tension. Regular massage just wont be very effective.

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Date Joined Jun 2017
Total Posts : 48
   Posted 7/21/2017 9:07 AM (GMT -7)   
Thanks everyone for your help and best wishes to all of you.
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