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Thursday, January 29, 2015

Feeling The Burn

Since I broke my arm far from home, I had to find an orthopedist back in Indianapolis.  There happened to be a good one sharing office space with my family practice doctor.  He checked my arm, examined the x-rays, and wrote up an order for physical therapy in a few weeks.  He said that the main problem will be breaking through all of the scar tissue that forms around an injury.

I set up appointments with an occupational therapist near work.  Since it was only a five minute drive, I set them up for after work.  Progress was very slow.  The therapist decided to add heat up my muscles with a wrap to relax them.  I could straighten my arm out, but I was having trouble making it my arm bend.  She applied a warm wet towel over my heavy winter sweater.  It felt very hot.  I didn't question that at the time.  When I got home and took my sweater off, I had blisters and burns on the back of my arm.  I still have a scar from that burn on the back of my arm.  Apparently, the heat setting was turned up too high.

Lesson learned:  Speak up and question your health care provider.  If something doesn't seem right, it probably isn't.  No matter what their status, education, or standing in the medical community, they can and do make mistakes.

Broken Dreams

My domestic partner, Tom, has a vacation condo in Florida.  He decided that we needed to spend two weeks of vacation before Christmas and return just after New Year's Eve.  He thought that being in a warmer climate would help the arthritis.  It did help.  It was sunny most days.  I was even able to swim a little with the help of a kick board.

One day after Christmas, we decided to meet some friends for dinner in a nearby town.  My friends had been neighbors who retired early and moved to Florida.  It rained that day.  We were hurrying to the restaurant in the rain when I slipped on the slick sidewalk and broke my arm.  It turned out to be a small bone chip with a dislocated elbow.  It didn't hurt, but it looked awful.  The doctor at the hospital easily moved it back into place and set it in a soft, removable cast.  I never had dinner that evening.

I am sure that my arthritis contributed to my fall.  I was in pain and having trouble walking.  Now I was really in trouble.  My left arm was in a cast and my right shoulder was frozen.  I couldn't even dress myself.  In addition, my wrists were both painfully swollen.  I had to wear wrist guards on both wrists.  I felt lucky to have such an attentive and loving partner who was by my side the whole time to help.


Wednesday, January 28, 2015

Best In Town

I called the rheumatologist that the pharmacist recommended to me.  I felt lucky that he was accepting new patients.  I was able to secure an appointment the same week.  The doctor spent a whole hour taking my patient history and background information.  I brought up the positive Lyme disease test.  I asked him if he thought that I might have contracted Lyme disease.  He read through my previous doctors' notes.  He did a thorough examination of my swollen limbs, neck, and feet. He looked up some information on Lyme disease on his laptop.  He then stated that he wanted to use a syringe to withdraw synovial fluid from my knees to send to a lab to test for Lyme disease.  He anesthetized my knees and withdrew some of the fluid.

At the conclusion of my exam, he said that most likely, I did have rheumatoid arthritis.  He gave me a prescription to double the dose of methotrexate that I was taking previously.  I drove straight to the pharmacy.  He wanted a follow up appointment in four weeks.


Tuesday, January 27, 2015

The Friendly Pharmacist

That next weekend I went to my pharmacist to refill my prescription for methotrexate.  I handed my prescription to the pharmacy tech, who kindly dispensed the pills and packaged them to be rung up.  He said, "Do you have any questions about these?"  I replied, as I handed him my credit card.  "Yes, the doctor said something about taking these with a dairy product.  Or maybe she said don't take dairy with these.  Do you know anything about that?"  The technician said, "I don't know about that.  Let me go get the pharmacist and ask him."  

He returned shortly and I restated my problem.  I explained that my doctor is Russian and a little hard to understand because of the accent.  He said, "Oh, I know what you mean.  My wife has rheumatoid arthritis and she went to that same doctor.  It is fine to take dairy with this medication.  If you ask me, Dr. Howen* is the best Rheumatologist in town.  My wife has had arthritis since she was seventeen years old.  She has been to every arthritis doctor in town."  

"Oh, thanks. I may give him a call,"  I whispered.  I collected my packages of pills and turned to leave the store.

*Name was changed to protect privacy.

Monday, January 26, 2015

The Russian Rheumatologist

My joint pain and swelling, which for a while was only on the right side (unilateral), soon spread to the left side.  In addition, my right foot swelled to the size of a football.  It hurt my feet to stand, and my knees to sit.  I had to buy larger and larger shoes.  Eventually my left foot swelled, but never as large as the the right.  I kept blaming the hard floors at work and the slab floor in Tom's new home.I discovered that Sketchers were making shoes lined with memory foam, which really helped.

I couldn't believe that my health had deteriorated so quickly.  Does arthritis really happen this fast?  One day you are fine, then practically crippled?  I questioned my doctor about that.  She said that the virus that I had in February probably triggered the Rheumatoid arthritis.  I had a nagging feeling and kept researching arthritis online.  I compared my symptoms to Lyme disease.  They seemed so much like Lyme disease.  The illustrations of a Lyme patient's knees looked exactly like mine on the center for Disease Control's web pages.  I even printed it out and handed it to my arthritis doctor.  She shook her head.  "No.  I don't believe in Lyme disease.  Not long term Lyme disease."  I let the subject drop.

I asked about cortisone injections for the pain and swelling.  I did not know how much longer that I could continue to work.  She agreed to give me the injections right away.  She only gave me a topical anesthetic.  What happened next, was the most painful experience of my life.Unfortunately, the shots did not work.

She gave me a refill for my methotrexate and sent me hobbling to spend the rest of the afternoon to my teaching job in even more pain than before.

The weather was getting colder.  I couldn't tolerate the cold weather.  It seemed to make the pain worse.  Tom set the thermostat at 71 degrees and it still felt cold.  I switched from wearing shoes to boots with three layers of socks.

Sunday, January 25, 2015

The Beginning

About three years ago,  I was the picture of health.  I was exercising daily, eating right, and getting plenty of sleep.  I went to the doctor once a year.  I had a small group of friends that I socialized with at least once a week.  I was single, (divorced) but managing to work and take care of my home solo without much trouble.  

After being single for 7 years, I finally met someone special.  We loved being outdoors and started to travel together.  One of our first vacations together was to the Grand Canyon.  We had both been there before, but we wanted to go back and hike to the bottom.  It was quite the adventure.  

Later that year we vacationed in Cape Cod.  We actually rented a Cape Cod style house out in the country.  We drove so that we could bring our bikes along.  We rode our bikes around everywhere and I brought my little wicker bike basket to haul groceries.  


Looking at a map of the area, we realized that we were not far from a ferry that could take us to Martha's Vineyard.  We decided that we were about six miles from the ferry at Falmouth, so we decided to bike there and then bike around the island all day.  It later turned out to be closer to twenty miles away.  We shopped, ate lunch and then rode the ferry back, and made it back to the Cape Cod rental just before dark.  This little adventure may have been when and where I contracted Lyme disease.  

Yes, we wore mosquito spray.  No, I don't remember a tick bite.  On the other hand, I could have been bitten somewhere else.  It could have been in Indiana, years ago, in my own back yard.

Three years ago, something started to slowly change.  I could feel my energy slipping away.  One day, I woke up with what I thought was the flu.  It was February and quite cold.  I had a runny nose and a stiff neck.  Eventually, the upper respiratory infection went away. (with antibiotics)  The stiff neck did not go away.  It lingered and got worse.  The pain started to travel down my right arm and into my wrist.  I went to the doctor a lot.  I went to my family practice doctor, my on site clinic doctor at work, and immediate care doctors.  My doctor decided that I had strained muscles and tendons painting walls in my house.  I had been getting it ready to sell.  My significant other and I were moving into a repo house that he had bought as an investment.  It was only five years old, but needed some TLC before we could move in.  We painted and rehabbed his house, too. 

I went along with the diagnosis of a muscle strain, even though I expressed to the doctor that we had finished all of our painting six months earlier and my arm and neck didn't hurt while I was painting or even immediately after that.  I was given prednisone and ibuprofen and told to get some physical therapy because I had a frozen shoulder.  It got worse.  

I went back to the doctor, and then I was referred to a sports medicine doctor.  He sent me for an MRI and x-rays.  It showed nothing.  No damage.  I was sent to more physical therapy.  At the next visit my knees were swollen and inflamed.  He numbed one of my knees, drew out some fluid, and had it tested for gout and psuedo-gout.  He wanted to run additional blood tests.  I suggested that he test for Lyme disease, MS, and Lupus.  (My sister and brother's suggestion.  My brother is a medical investigator.  My sister had looked up my symptoms on a web search engine called Isabel and she came up with Lyme disease).

The sports medicine doctor phoned me with the results of the tests.  The only positive test was for Lyme disease.  He had done the standard ELIZA test for Lyme disease.  It came back high positive for Lyme.  I told him that I wanted a prescription for antibiotics right away.  He faxed in a 7 day prescription and told me to come in for a second test called a Western Blot test.  He explained that the test that he had given me for Lyme disease has lots of false positives and that he didn't think that this could be an accurate diagnosis.  

In the mean time, I was not getting better.  My prescription had no refills.  The Western blot came back.  I never got to see it.  I was told that, "I only think that my legs are swollen." and then sent to an infectious disease doctor.  He ran a few more tests and declared me free from Lyme disease.  He suggested that I could be suffering from pre-menstral conditions or menopause, even though I had a hysterectomy nine years earlier!  

By this time, my knees were undeniably swollen and I was in excruciating pain, especially at night.  I couldn't stand without support.  I was getting very little sleep.  I could not imagine how I could continue to work and take care of my house and yard.  

I was thinking of selling my too large house, selling some of my furnishings and moving to a much smaller house closer to work anyway.  And then I met Tom, my significant other.  We decided to move into his house which was about seven miles closer to work.  I still would have a 1/2 hour commute to work.

I decided to visit yet another doctor: my endocrinologist.  I have hypothyroidism and I thought that maybe this could be the cause of all of this pain and swelling.  He said that my thyroid disease was under control and that I most likely had arthritis.  He referred me to a rheumatologist who was accepting new patients.  

She turned out to be a foreign doctor with a thick, Russian accent.  She said that she thought that this could be cancer and wanted to run several tests.  She then told me to get a colonoscopy to check for colon cancer.  

My legs continued to swell and by now I was hobbling into work like a ninety year-old lady.  I am a teacher, and staying upbeat, energetic, and enthusiastic was nearly impossible.  Luckily, it felt better to stand than sit, so I figured that sitting around at home or staying in bed all day would only make me feel worse.  My job, the students, and work gave me a distraction from the constant pain.

The arthritis doctor said that the tests for cancer and Rheumatoid arthritis came back negative.  She said that I still had Rheumatoid arthritis, even though xrays showed no damage and tests were negative.  She said that up to a third of patients who have Rheumatoid arthritis, don't test positive for it.  She put me on methotrexate and told me to come back in a few weeks for tests.  My liver enzymes would now have to be monitored for damage.

My symptoms got worse and spread to other parts of my body.  I could no longer open jars, turn doorknobs, or open pill bottles without help.  Dressing was difficult by myself.  Simple chores were getting neglected because I did not have the energy and I was in pain.  I had to wear wrist guards on both wrists to type, teach, and drive to work.  Sitting in my car to drive was painful.

Cold weather was the worst.  I felt cold all the time.  The cold air made my joints ache even worse than before.  Even rain caused my joints to inflame.  I piled on the layers of clothes during the day, and blankets at night.  Tom was thoughtful enough to buy me a heated mattress pad to keep me warm at night.  The weight of the blankets felt like hundreds of pounds.  My legs felt morbidly obese from the swelling and they seemed to weight a hundred pounds each.

I was resigned to my diagnosis of rheumatoid arthritis, even though no one in my family had ever had it.  Was it caused by the flu virus I had caught in February?  I began researching cures for arthritis.  I asked my doctor about biologics.  The methotrexate wasn't working at all.  If anything, I was getting worse.


At one point, I told a relative, "I am not going to make it."

More later...

Monday, January 19, 2015

Ticked Off

Like most people with long term Lyme disease, getting the correct diagnosis is half the battle.  It was a long and painful journey to get to the diagnosis of Lyme Disease.  

I am not really sure where or when I was bitten by the tick that infected me with Lyme disease.  I have traveled extensively the last few years.  The truth is, that according to the Center for Disease control, Lyme disease is present in all 50 states, and much of Europe.  I did travel to the east coast about three years ago, shortly before having my first symptoms of Lyme disease, where Lyme disease is most prevalent.

If you were like me, I really knew little about this insidious infection.  I knew that it was a rash caused by a tick bite, but I knew little beyond that fact.  In my mind, I incorrectly assumed that it was similar to a spider bite.  I thought that the effects lasted a few days and that was it.  I am from the Mid-West, and we are not really educated by health care professionals or Public Service announcements about Lyme Disease.

Over the last three years I have been incorrectly diagnosed with:
frozen shoulder
cancer
Rheumatoid arthritis
Psoriatic arthritis
conversion disorder (my personal favorite)

I was prescribed with methotrexate, which is an immuno-suppressing drug, and a type of chemotherapy, which made my situation worse.  

Imagine my anger when I found out that what I really had was Lyme Disease.  The clues, symptoms, and test results were there all along, from the beginning.  The doctors ignored the symptoms, dismissed test results, and shifted me from one type of doctor to another.

More later...

There is a lot of mythology surrounding Lyme disease. Be careful of  so-called herbal or home remedies.


Here are some facts about Lyme Disease:


  • In 2013, there were over 27,000 cases of confirmed Lyme disease reported to the Center for Disease Control, with an additional 9,000 or so unconfirmed but probable cases.



  • Lyme disease is under-reported.



  • Lyme disease is in 49 of 50 states and much of Europe.



  • Chronic Lyme disease is a real condition that is not easily treated, probably because it usually comes with several co-infections.  All of the co-infections need to be treated before a patient will improve.



  • Getting mis-diagnosed is a common problem for many patients.  Getting a proper diagnosis is difficult and may take years and visits with several different doctors.  This needs to change.



  • Doctors are not gods.  They make mistakes.  Tests can be misinterpreted or just plain wrong.  Most doctors are taught little about Lyme disease.



  • You don't have to travel far to get bitten by a tick.  I know someone who was bitten by a Lyme tick in her back yard and contracted Lyme disease, right here in Indiana.



  • Be your own advocate for your health.  Your doctors may not care.  As one doctor said to me, "I have no skin in this game."  Don't give up when trying to get the proper treatment for Lyme disease. If you loose faith in your medical professional, move on.  There are a few out there who care and will help you.  



  • Once Lyme disease is in the third stage that causes arthritis, you have had it for a while.  It is going to be difficult to treat.  It may take a long time to get rid of since you've had it so long.  Be patient.  



  • Believe it or not, there are many people around you who also have this.  Ask around.  Talk about Lyme disease.  A lot of us are suffering in silence.  

  • You need to have hope to survive this.  
Why am I writing this?  My doctor told me that I have a lot of emotional pain and anger about being misdiagnosed, mistreated, and even harmed by many doctors.  She said that I needed to deal with this anger or I won't recover.  I have vowed to be an advocate for Lyme disease patients who are going through similar struggles in their lives.  Maybe someone will read this and see their own symptoms and get the help that they need to get well.  I know firsthand how painful and debilitating this disease can be and how frustrating it can be to get the proper help that you need.