Atypical, weird symptoms. Lyme or not?

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Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 11/12/2010 10:23 AM (GMT -7)   

I hope this long discourse will interest someone.  Member thoughts would be greatly appreciated !

One month ago I got a very stiff neck, stiff trapezius muscle and radiating pain into my shoulder and down spine along scapula. The pain was similar to having a ruptured disk. I know this pain well because I ruptured a disk in my neck 8 years ago. This was repaired with fusion and I never had any problems afterward. Obviously I thought I had another rupture. But an MRI showed a little arthritis/compression but NOTHING to explain this new and severe pain.

A year before this I got chronic 'tennis elbow' and both shoulders have been exhibiting pain similar to rotator cuff issues. Left ankle presented with cracking and pain and x-rays showed NOTHING.

Most recently my head had the weight of a bowling ball and the effort it took to do any activity that involved shoulder, trapezius, upper arm and neck muscles was extremely exhausting. It was at this point I began to suspect Fibro or Polymyalgia or osteoarthritis among other things.

Then I began to suspect Lyme Disease and went back in my mind to everything ELSE that had been occurring over the past year. The list began to lengthen: Severe sensitivity to sound for a while, ringing in my ears, stuffed up head, skin sensitivity and the feeling of being uncomfortable all the time. Even pillow pressure would bother me. I couldn't sit still or lie still. Always shifting position.... and I was tired a lot.

Then I added the severe shooting pains in my teeth that were happening regularly. Now this was just too weird. Put all of these symptoms together and  MAYBE they scream of Lyme Disease. 

Though I kept blowing all of these symptoms off to just getting older or some other explanation, I did seriously wonder how a healthy, vibrant, fit person such as myself could fall apart like this in one year and have so many things wrong?

Anyway, I always have fresh Doxy on hand for my dogs should they ever contract Lyme. Which they have. So......I started taking it and made an appointment with my LL doctor who strongly does suspect Lyme though some and/or all of my symptoms can be seen as atypical and could suggest some other kind of disease or health issue.  I am now awaiting blood test results and will continue abx treatment no matter what the outcome.

In the meantime and after being on Doxy for one week my stiff neck is remarkably better. But the pain is wildly migrating all over my back and shoulder blades!  My ankle is completely better, then it's not. I had a  pretty significant bout of muscle twitches, hand tremors, shooting nerve pains and pin-prick sensations all over my body. Even in my eyeball! That has mostly subsided now and the pain in my teeth is almost nil and my head feels pretty normal-- no more heavy bowling ball sensation or sensitivity to pillows and my tiredness has greatly improved. However, tennis elbow is way worse--- killing me! Knees ached for a bit but that went away. Coincidence in all of this?  Maybe, maybe not.  Is the neuropathy, etc. a positive Herx reaction? Maybe, maybe not.

Bottom line? My doctor and I really don't know if ANY of my symptoms/pain are Lyme related or if the Doxy is thankfully doing the good things it is supposed to, should I indeed have Lyme.  Too soon to tell?   Opinions apppreciated! 

Also, I have been all over the boards and Lyme sites about this disease and have only seen the words joint pain and stiff neck listed among symptoms. But what kind of joint pain is associated with Lyme? What kind of stiff neck is related to Lyme?  Is it simply generic pain or is it more specific? Does anyone know? 

Lastly, I did get a bullseye rash when I had Lyme 12 years ago. Was treated iimmediately and never looked back.... until now. But this time no rash was apparent.....just quite a few ticks!   

Cheers to all and get well !!!



Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 11/12/2010 2:51 PM (GMT -7)   
I will say that I have learned that lyme is extremely strange and can manifest itself out of the blue in the strangest symptoms. I wonder how long I had it before I was diagnosed. One of my first symptoms was stiff neck for which I went to a chiropractor for the first time, it was that bad. Many months before that my legs were bothering me and many months after I started with severe anxiety. It took years later to have tendonitis in elbow. I STILL get strange and new symptoms even after being on antibiotics for 1 1/2 years. The testing is so unreliable. Perhaps see a LLMD. If you have lyme, they are the only ones would will be able to help you.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 11/12/2010 3:16 PM (GMT -7)   
Though the blood tests are unreliable, I'm very interested in what it will reveal....if anything. Should have results next week. My doctor is a Lyme specialist , so we will see where to go from there.

My tooth pain just returned tonight with a vengance and my ankle is really acting up. Stiff neck was almost gone most of the day but elbow pain is at an all time high. Who knows what tomorrow will bring.

Thank you for the reply..... and soooooo sorry to hear you were undiagnosed for so long. This is truly a terrible disease.

Regular Member

Date Joined Aug 2010
Total Posts : 96
   Posted 11/12/2010 6:04 PM (GMT -7)   
Hi Catt111

Your post really caught my attention, My first really noticeable symptoms were identical to yours, this was back in April this year. Pain down the back, shoulder and the scapula pain, I still have that to this day.

I too recently started thinking back over the past about little heath complaints I have had, similar to what you described. I put it down to getting older and also hormones because I had a baby in 2009.

I am just on the verge of diagnosis, I have just had my test results back, and they are showing some evidence of Lyme and Bart. I have a follow up appointment with the LLMD this Wednesday, so will confirm diagnosis then.

You asked about types of pain. Well I get a lot of back pain, in the middle of my shoulder blades I get a dull ache type pain, sometimes all my left shoulder and round the scapula area I have what I would describe as stiffness and nerve pain, occasionally this travels down my arm, and my arm or fingers feel numb. I have pain under my left arm into the armpit, and it can feel swollen and like I am carrying something under my arm.

My neck is often stiff or just aches, and sometimes cracks when I turn my head too fast. I get stabbing pains in my head and eyes and feet. I have a permanent dull ache at the top of my rib cage just under the breast, and I get squeezing sensations around my abdomen, it feels like I am wearing a tight bra even if im not wearing one.

I do get aching sore joints sometimes, my elbows and knees especially, but its mostly neuro pain with me. It can be a burning pain or a bruised feeling or just simply stiff and achy, and my joints often crunch and crack.

Degrees and types of pain can change from day to day, and often go into remission, only to return later.

You definitely need more treatment, if your doctor is a LLMD you are in good hands.

Best of luck

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 11/12/2010 7:05 PM (GMT -7)   
Hi Littlehutton:
Wow...such similar symptoms! 
Sometimes it feels like I could pull my shoulder blade attachments right off the bone. Horrible! 
I almost felt like a crazy person when I showed my doctor my list of over 15 things that are or had been going on all over my body.  But at least I responded normally to the physical tests he gave me. Good balance, no numbness, etc.  Hopefully I'm not that far gone.
A friend of mine developed Bell's Palsy and has had no return symptoms in two years.  
Fingers crossed that this will be the case for me, you and others.   
Best of luck to you too....and let me know how you get on with your treatment.

Caldonia Sun
Regular Member

Date Joined Aug 2009
Total Posts : 310
   Posted 11/12/2010 7:14 PM (GMT -7)   
I had to look at your name to make sure this wasn't an older post of mine! Our symptoms are very similarI had a positive lyme test and was treated. I am not 100% but doing much better.

The joint pain can affect any joint and can move around - one week, the hands, one week, knees, etc. The stiff neck for me was just that, couldn't turn all the way to the left and all the muscles in the neck, shoulders and upper back were sore and tight.

Hope you find out and get well soon.

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 11/13/2010 6:09 AM (GMT -7)   
Hi Caldonia Sun,
After reading these few reply posts, I find the info and similar symptoms very cathartic in a way. Now I know I'm not making all this up! 
I'm just frustrated that my PCP didn't suggest a Lyme test or even think of Lyme when I went in complaing of severe and lingering tennis elbow and the neck pain, especially when my MRI came back negative.  
But I guess we must all be our own best advocates when it comes to health. 
Thankfully my LLMD-- though skeptical of certain symptoms as being atypical-- was strongly in favor of it being Lyme or more.  He warned me of a false negative blood test coming back,  but wants me to stay on Doxy until we sort this all out. Might have to go IV or switch abx at some point. Too early to say. 
What really kept throwing me off the Lyme possiblility for a while was that deep tissue massage would clear up neck and elbow pain for a couple of days. Slowly pain would return.  Therefore I just thought I had normal tissue/tendon/muscle damage from over exercise that just needed time to heal.  Bah!  
I wish I put all of my symptoms together way sooner !!! 

Caldonia Sun
Regular Member

Date Joined Aug 2009
Total Posts : 310
   Posted 11/13/2010 2:58 PM (GMT -7)   
The massage helping makes sense. Symptoms and pain are caused by a build up of the toxins the spirochete produces. The massage would help with lymph drainage and thereby remove toxins so you feel better.

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 11/13/2010 4:04 PM (GMT -7)   
The massage/toxin release makes so much sense. Thank you for pointing that out.
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