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Sunday, April 12, 2015

Wearing Lyme: Strange Symptoms

Lyme disease has a wide variety of symptoms.  From what I gathered, the symptoms vary from person to person.  For me, the first symptom that something was wrong, was that I had a stiff neck.  I had what seemed like a flu or upper respiratory infection.  I went to the doctor and was prescribed antibiotics for the infection.  The upper respiratory infection did go away, but the neck pain worsened.  Soon the pain began to creep down into my shoulder, and then gradually into my wrist.  All of the pain was initially limited to my neck and arm area on the right side of my body.  My doctor told me that I had arthritis, even after my Elisa test for Lyme came back positive.  He then prescribed prednesone which made it worse.  After that, all hell broke loose.  My knees and upper thighs swelled like balloons over night.  I was in excruciating pain.  I wasn't sleeping at night.  My breasts also swelled up.  I looked so bloated.  I gained 15 pounds in a short time.  My legs felt like they weighed 100 pounds a piece.  My wrists were weak and I began dropping things.  A cup of coffee felt too heavy to lift.  I had trouble opening door knobs and turning on the shower and the pain had spread to both hands.  Small bumps would form on my wrist joints that looked like Baker's Cysts.I couldn't stand to be touched because it hurt.  Even though I initially had a positive Eliza test for Lyme, my doctor told me that it was a false positive.  He told me to go see a Rheumatologist because I had Rheumatoid arthritis, not Lyme disease.

After seeing two arthritis doctors and progressively getting worse, I decided to throw away the methotraxate pills and try to find someone who treats Lyme.  In the meantime, I had an annual mammogram that revealed some sort of mass in one of my breasts.  I was  told that there was a pretty good chance that I had cancer.  (This was the second time I was told that I had cancer.  A Russian arthritis doctor told me that I had cancer. When it turned out I didn't she decided I had rheumatoid arthritis.)  I had some repeat mammograms, an ultrasound, and a needle biopsy.  It turned out to be a fluid filled cyst.  The doctor drained it and it collapsed.  Soon however a second, even larger cyst developed in my right breast.  I didn't bother to go back for that one.  Later on, my Lyme doctor prescribed iodine pill, which made the large cyst go away.

My feet started to swell and hurt.  I kept having to buy larger and larger shoes to wear to work.  I must have spent at least a thousand on new shoes.  My usual size six had swelled to a size 8.  I finally had to buy some large, faux-fur lined boots to wear to work in the winter.  They provided some cushion as well as warmth.  I was now having extreme cold intolerance.  My hands and feet always felt like ice.  My core temperature had dropped to 96.7.  I just could not warm up.  The only time I felt comfortable was in a hot shower, which eased the painful joints and the cold feeling.  At one point my right foot swelled to the size of a small football.  I begged my doctor for a steroid shot.  It only helped for a while and allowed me to continue to work. At that point I was still seeing the arthritis doctor who was convinced that I had arthritis of some sort, even though I tested negative for that.  I wish now that I had never used steroids or prednesone.  I believe that it has delayed my recovery.  Later, I found some memory foam shoes by Sketchers, that really helped with the pain and discomfort of my feet.  I swear by them now.

After starting treatment with a Lyme disease doctor, I started to improve immediately.  The pain and swelling on my neck: gone.  The pain and swelling of my wrists and hands: gone.  My frozen shoulders. gone.  I have regained complete mobility in both shoulder joints.  The pain and lack of mobility in my broken elbow because of a fall: back to normal with full range of motion.  My knee joints are no longer painful, but continue to be swollen.  I have a swollen jaw on my left side.  I am not sure of the source of this swelling and I have not heard of this being a symptom of Lyme disease. I also still have a ringing in my ears.  I wonder if this is because of some of my medications.  I also have thinning hair, most likely due to a combination of the Lyme disease and due to the methotrexate that was mistakenly prescribed for arthritis.

I seem to have reached a plateau in my treatment where I am not getting worse or better.  I am just staying the same.  I am now throwing in some herbals and supplements to see if this brings any improvement.  I feel strong enough now to exercise.  I can't run yet, but I hope to someday.  I can rebound on a mini-tramp, use a rowing machine, do sit ups, lift small amounts of weights, and walk briskly.  I have never been a couch potato until Lyme disease hit me.  I think that I can finally start hitting the gym.


  1. Do you experience dental problems with Lyme disease? I chipped a tooth early in my Lyme disease and I have a swollen jaw. Anyone experiencing those symptoms with Lyme?