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Old 10-08-2007, 04:11 PM   #1
Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User

Hi, I would like to know if others have had my pain problems and what I can do to help get it under control. This is what I have going on. Severe head, neck, and middle back pain. When I look up, down, turn my head to the left or right I have pain. Constant pain that never goes away. I can hear creaks and cracking. Sometimes at the base of my skull I hear cracks. It's very annoying and painfull. I also now have TMJ disorder. I get the same type of crack noises when I open my mouth to eat. especially in the morning. On top of this I have tinnitus (ringing ears). This has been going on the past 18 months. I am so frustrated and feel like I'm going crazy.

I had a MRI of my Thorasic (middle) spine. These are the results: Multilevel Schmorl's node formation of the distal thracic spine. I have know idea what this is or what causes it. I could bet its probably from Lyme.

1. Will these symptoms ever go away?
2. Is this Lyme inflammation, or other?
3. Does the antibiotic help this?
4. What meds or supplements are out there that could possibly help me?
5. Anyone have Schmorl's node formation?
6. Should I get a lumbar puncture?
7. Could this be meningitis? I have no fever.

Last edited by bigstan; 10-08-2007 at 04:13 PM.

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Old 10-08-2007, 06:01 PM   #2
Junior Member
Join Date: Jun 2007
Location: kentucky
Posts: 25
chinookshay HB User
Re: Pain

Im sorry i dont have alot of answers for you, but I am going through the same things. I just started doxy and the ringing in my ears is better on some days and worse on others. I have suffered the same head, neck, cracking. back pains and ear ringing with echoing (like talking in a box) for the last 8 yrs. I dont know what Schmorl's node formation is, but I do know that the trigger point injections (lydacain or something like that not the steroird injections) from the base of my skull to the top of my shoulder almost had stopped the pains inmy neck until I started the abx. Now they are back. Just a part of the herx I hope. Just thought you would like to know you're not alone in this. Sometimes ice packs would help on the base of my skull too, but they were short lived relief, but worth it at the time. If you find anything that works, I would be interested in hearing. Do you detox? So far my detox hasnt helped much, but I'm still trying. Take care and keep the faith.


Old 10-08-2007, 11:31 PM   #3
Join Date: Dec 2006
Location: MI USA
Posts: 116
bigstan HB User
Re: Pain

Thank's Shay for responding. I can't believe you have been through 8 years of this pain. When were you diagnosed with Lyme? I'm going to ask my doctor about lydacaine for pain. As long as it isn't a steroid I'd be willing to try it. I did some research on Schmorl's node formation and found out they are defined as herniations of the intervertebral disc through the vertebral end-plate. They may result from any disease or condition that leads to weakening of the cartilaginous endplate or subchondral bone of the vertebral body. Whch is probably what the Lyme inflamation has done to me.

I haven't tried detox yet. Do you have any suggestons on what to take or do? I'll keep you posted on anything I try that works for pain.

Thanks for answering

Old 10-09-2007, 06:16 AM   #4
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Join Date: Mar 2006
Location: California
Posts: 2,924
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Re: Pain

Hi Bigstan,

From what I went through with all of the orthopedics, Shrinks, Mri's, Cat Scans, blood test, neck braces, wrist braces...nuerologist, Ent's ect ect ect.....

I was diagnoised with alot of bone spurs, deteriating bone, vertabae's that needed to be fused ect ect...Once I got into a few years of treatment the pain went away.....

Have you tried a good chiropractor, massage, accupunture? Try doing things that help you get the dead bacterias out. Do you do the detox baths? 4 cups Epsom Salts and 64 ounces of Hydrogen peroxide. When you get your picc out you might try finding a suana to sit in. Sweat sweat sweat...

I would really try and stay away from "any" surgeries until you have gotten better.

Hope you have a pain free day.


Old 10-09-2007, 06:33 AM   #5
Join Date: Oct 2006
Location: Kansas City, KS
Posts: 405
KeyLyme HB User
Re: Pain

I'm so sorry that you are experiencing such pain. I can completely relate. What has helped me is seeing a chiropractor and also taking Indocin. Indocin is similair to naproxen but is stronger. It isn't a narcotic and it's not habit forming. It has helped w/ my joint inflammation and pain.

Good luck and I hope that things will start to get better for you.

Old 10-09-2007, 04:00 PM   #6
Junior Member
Join Date: Jun 2007
Location: kentucky
Posts: 25
chinookshay HB User
Re: Pain

I finally got someone to believe me and went to an LLMD 2 months ago and started doxy one month ago. I had to decrease my dosage and build up to the 400 mg a day. My doctor said to try that or he will switch me to a different med. I couldnt keep from getting upset stomach. I am just starting to add 100mg a day for a week, then increase to 200mg a day and so on. I see him again on the 29th. I am pushing it day by day. It has been a battle for all these years. Nothing can describe it. Hang in there and we will all get better.

Old 10-09-2007, 04:45 PM   #7
Senior Member
Join Date: Oct 2006
Location: usa
Posts: 182
mctassi HB User
Re: Pain

Hi big stan,
I'm in the same boat as you. My neck kills me. They say I have deg. disk disease (arthritis) in my neck. But I get the creaks, cracks and crackling. I also have the base of the skull ach. Really my whole head is in bad shape.
The ringing in my ears started a few years ago. Mild at first but over the past 15 months it is almost constant. It really isn't just a ringing anymore. It's like a low electrical humming sound deep inside my head. I just started high doses of doxy last week and will start another antibiotic next week. I 'm thinking I will hopefully see some improvement in my neck, head and ears.
I will definetly stay away from steriods and surgery. Take care mc

Old 10-10-2007, 12:58 PM   #8
Join Date: Jun 2006
Location: Bloomfield, MI USA
Posts: 85
srocc20655 HB User
Re: Pain

Big Stan,
My Lyme began with a constant sore throat, dental pain, jaw pain and neck pain so excrutiating I felt like someone was standing on the side of my neck. I spent 2 Sundays in the ER before I was diagnosed with Lyme because I felt like I might be having a stroke. I was also sure I had some rare cancer or some other serious illness that they had missed. Of course the Drs. were mystified because my original Lyme test was negative (sound familiar!)

Here's some history - I got Lyme in December 2005 and my symptoms began on January 1, 2006. I wasn't diagnosed by my Grand Rapids Dr. until June 2006. By then I had had a needless tonsillectomy because the Drs. here didn't know what else to do with me. As a result I was put on 6 weeks of steriods for the swelling which made the Lyme thrive. By June I couldn't hold my head up, had tremors and pain so excrutiating I could hardly function.

In June 2006 I tested positive for Lyme (with Igenex) and my LLMD put me on 5 weeks of Doxy and 3 1/2 weeks of IV Rocephin. That helped get my CD-57 cells up to a level where my Dr. felt I could be taken off the meds (120).

From August 2006 until a month ago I was off antiobiotics but took all the natural stuff (Samento, Noni, etc.). I continued to have terrible neck and jaw pain. I began seeing a Chiropracter in Birmingham who helped me quite a bit however the pain always came back. However I continued to see her and I am glad I did - she works my jaw muscles from the inside, my neck and back.

Back to a month ago - I went for a check up with my LLMD and had another CD-57 test and my results went from 120 (when the picc line was removed) to 34! So my Dr. started me on another round of antiobiotics. I have been on them now for almost 3 weeks. I am taking Flagyl and Amoxicillan. Since I have been on them my pain has almost gone away. I think that with the chiropractic work has made all the difference.

So hang in there. You will feel better but you have to seek out help. Chiropractors are great! My Chiro (and my nephew and his wife who live out west) went to National Institute of Health in Chicago - a great school for Chiropractors. I would recommend seeing a Chiro who is a graduate of this school.

It will get better. I am leading a normal life right now. In fact I have even been business traveling again almost every week.

Sounds like we have had a very similar Lyme experience (nightmare??). Please let me know if you have any questions or if I can help you at all.

Regards, Sue

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