LymeJournal

When I first started feeling sick I assumed it would pass with time.  As my energy level dropped and barely had enough energy to chew dinner, I finally realized something was seriously wrong!  Like most people, I hadn’t had much experience with doctors; other than you go to them when you are sick, they give you medicine and you feel better.  It is this simplistic thinking that prolonged my agony and allowed me to go undiagnosed for several years.

For some unknown reason, most doctors are completely ignorant in the area of lyme disease.  It’s as if they all attended the same seminar called “lyme disease doesn’t exist”.  Never did my doctor mention lyme or testing for lyme.  My profession isn’t medicine, so I followed my doctor’s advise blindly.  In his defense, I do believe he wanted to help me and he took a lot of time listening to my symptoms and filling out insurance paperwork on my behalf.  Unfortunately, without knowledge and acceptance of lyme disease, we went in circles for several years.  His final conclusion was that I either had MS or I was developing some type of cancer that wasn’t showing up yet.

It was the internet that lead me to lyme disease.  I was reading about the “new great imposter” when I realized lyme disease was a very plausable cause to all my symptoms.  Luckily, I also read that most doctors don’t test for lyme and when they do, the tests they use are unreliable and the treatment is ineffective. 

Armed with this new information, I went back to see my doctor and insist that we test for lyme.  In the back of my mind I knew this would get me no where.  And that is just what happened.

Up to this point I had been tested for so many things, I’ve forgotten most of them, but let’s give it a go…

X-ray and CT scans of the chest and head (several times), which showed a deviated septum, chronic sinusitis, thickening of the bronchial wall, and apparantly a mild case of Pectus excavatum (funnel chest), which sounds pretty bad to me but I was assured it’s nothing to worry about.

Abdominal ultrasounds, several which looked at most of the internal organs. Of course all was fine.

Bloodwork, so many times I lost track.  I was tested for all the normal things, anemia, thyroid, blood count.  From this I learned that I had allergies (as if I didn’t know that) and hypoglycemia (again, no surprise here).

Then I had more blood tests to determine if it was true hypoglycemia. This involved fasting and staying in the hospital to drink sugar and get my blood drawn every few minutes.  Again, I was told that I have hypoglycemia, but hey, don’t worry… no big deal.

Next I was referred to an endocrinologist (I guess because of the blood sugar and my doctor was at his end of suggestions).  This was a very bad experience that I would like to forget.  After sitting in the waiting room for 2 hours, I was finally seen by this old man who should have retired long ago.  He looked at my records, listened for about 30 seconds to my symptoms and looked at me directly while he said, “you are depressed and need a psychiatrist”.  He then said he would do the basic bloodwork again and vanished, never to be seen again.  I was very upset to say the least, but allowed the blood to be taken again.  Of course, this came back fine, because I just needed anti-depressants.

I went back to my doctor, told him what happened.  He was upset that I had wasted my time and said he wouldn’t refer anyone else to this endo.  He then suggested I see a different endo.  So I did…

This time the doctor seemed more concerned. He listened to all my symptoms, reviewed all the tests I had endured and did a thorough physical examination.  He was concerned that I was having drenching night sweats and ordered a TB test.  Of course this came back negative.  He also ordered a test to rule out adrenal gland problems.  The test was done in the hospital, where they treat cancer. I was there a couple hours hooked to needles.  They would inject me, wait a few minutes and draw blood. By the end of this test I was more sick than I had ever been. The results… all is normal.

With the words of the first endo lingering in my mind, I decided to rule out the psychological possibilities and made an appointment with a psychiatrist.  In all honesty, I already had been to a psychiatrist and treated for depression in the past, that’s why I was willing to go this route.  I was really hoping he would tell me it was depression and give me a pill to make things better. But… he said it was not a psychological problem, something was wrong physically and I needed to keep searching for a doctor who would help.  Disappointed there was no quick fix, but also glad to have this in my file for any future nay sayers, I decided to get a second opinion.  I saw another psychiatrist, again I was told it was a physical problem and I needed to find a competant doctor.

I moved on to see two allergists, who did me no good.  I had a nighttime sleep study and a daytime sleep study. I was told I didn’t meet the daytime requirements for narcolepsy and I got no REM sleep, but it wasn’t a sleep disorder.

I went to a rheumatologist who said I had fibromyalgia. I was given muscle relaxers, which didn’t help and made me more fatigued than ever.

I saw an Osteopath.  He did some back and neck adjustments (one of my original symptoms was bad neck pain). He liked the diagnosis of fibromyalgia, but offered no help.

During this time I tried many different medications. Antidepressants, Lyrica, Gabapentin, Adderall, Ritalin, short rounds of antibiotics for the sinus infection, armour thyroid (even though my thyroid levels were normal)… you name it, I tried it!

After I lost my job and benefits, I felt helpless.  My disability claim was denied because my tests were normal and I should be healthy. I then applied for social security, again denied at every level and then put on hold pending judicial review. It seemed things couldn’t get any bleaker.

I decided to go back to my original thought of Lyme Disease.  I spent all my energy reading about it and reading about people’s experiences with getting diagnosed and treated.  I came to the conclusion that I needed to find one of the LLMDs that I had read about (lyme literate medical doctor).  Of course there were none in my area, or even in my state for that matter. 

I filled out information online for a referal and was given the name of a doctor in PA.  I was worried about having no insurance or income, would he even see me? I had been turned down by several local doctors because I had no insurance… After putting it off for months, I finally picked up the phone and called the LLMD’s office. I explained that I had no insurance or job, because I was too sick to work. Amazingly, the person on the other end said I wouldn’t be the first patient without insurance.  He told me the fees and what to expect.  I ran it by my husband (who was also desperate for me at this point) and we scheduled an appointment.  Luckily, someone had cancelled and I would be seen within a few days.  I had expected at least a three month wait.

See my next entry for the continuation.

About 5 years ago, something bit me…  At the time I didn’t think much of it because it didn’t really hurt, and I was simply busy and didn’t have the time to fool with a bug bite.  What a mistake this was!

As it turns out, the rash I developed was a “bull’s eye rash”, which is a definite sign of lyme infection.  Unfortunately, I didn’t recognize it as Lyme Disease and I didn’t rush to the doctor for treatment.  The rash lingered for a while and seemed to grow larger as time passed.  The rash cleared up and I attributed feeling poorly to stress at work.

As the months passed, I started to have more and more bad days than good days.  It grew from feeling flu-like to a constant ache in the neck and overwhelming fatigue.  I consulted my doctor when my symptoms began to interfere with my work.  This began a long journey of medical testing and a quick descent into complete physical disability.

After enduring many painful tests and trying a number of medications (including anti-depressants), I found myself with no help or hope.  I quickly became too ill to work and found myself with no medical insurance. 

To make a long, painful story short…

My doctor almost laughed when I suggested lyme disease.  He ran his generic test for Lyme which was of course negative.  I was prescribed more antidepressants and sent home to suffer.

Many days I felt like ending it all… but that wasn’t realistic.  So I used every bit of energy I could muster to continue researching illnesses.  My quest for health took me to 20 different specialists.  Almost every one of them said it was mental.  So I went to 2 psychiatrists.  After a thorough exam, each concluded it was a physical ailment, not psychological.  But still, the doctors continued with mind altering drugs and that look that says “you’re nuts”.

So many times I came back to the memory of that bull’s eye rash and possibility of lyme disease.  I finally decided to seek out a lyme literate doctor (LLMD).  The nearest one just happened to  be in another state, about a 6 hour drive.  Luckily I have a supportive husband who knew I needed help and remembered the bull’s eye rash.  So with his encouragement, I called the LLMD and made my first step toward a real diagnosis and help!

What is Lyme and do you have it??

You’ve likely read about Lyme Disease or heard about it on television.  It is passed off as a rare bacterial infection that is only transmitted by a specific type of tick in a small localized area.  Unfortunately, Lyme Disease is much more severe and widespread than we are commonly lead to believe. 

It isn’t unusual to have no memory of a tick bite or even of the bull’s eye rash that is often associated with Lyme Disease.  For this reason, Lyme Disease can go unrecognized for years as the cause of a multitude of symptoms.  The gradual worsening of symptoms can be misleading to the best of doctors, often creating the need for painful and unnecessary diagnostic testing.

Lyme Disease is a bacterial infection that is capable of penetrating the immune system, causing havoc in every bodily system.  The Lyme bacteria can burrow into any organ or tissue in the body, where it can easily change forms to ensure it’s survival.

It is very difficult to receive a correct diagnosis, especially early on in the initial infestation.  There are many reasons for this difficulty; poor diagnostic testing, false negative test results, and denial of the existence of Lyme Disease by physicians around the world.  These factors make it very hard to get a correct diagnosis, especially when the disease is most treatable after the first days of the initial infection.  Unfortunately, most people are not treated for Lyme Disease until long after the bacteria has had time to grow and colonize.  For this reason, Lyme Disease becomes chronic and almost impossible to treat. 

I have created this blog to keep a running journal of my own experience with Lyme.  In the posts to come I will share detailed information about my struggle to get diagnosed and properly treated.  I will also keep a record of any supportive treatments I have tried and the success or failure I have achieved with each.  Among other topics, I will discuss the impact Lyme has had to my lifestyle, work, mental health and relationships.                 Comments and suggestions are always welcomed!