Monday, July 26, 2010

Warning, warning.....

.....danger, Will Robinson!

(For those who are too young to have watched television in the 1960s, this is a reference to a VERY old TV show called Lost In Space. The robot used to say this quite frequently.)

I feel I should share the story of my chronic illnesses as a warning because it just may help someone who is new to this blog and who is in diagnostic story is sort of a mystery novel...tracking down the culprit, step by step, until finally you have him cornered!

Background: my family has a genetic predisposition to autoimmune diseases. I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. Wasn't dx with Hashi's until my thyroid was basically dead though, in my early thirties. Wasn't dx with celiac until much later in life...more on that further down.

In March 2004 I noticed that the whites of my eyes were yellow. It was a very serious case of hepatitis (AST/ALT > 3500!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. They were talking about a liver transplant at that point.....then I discontinued an over-the-counter herbal medication I was taking and things improved spontaneously. I was off work for weeks and had to endure months of my skin and eyes being the color of a yellow highlighter, but I thought it was just an isolated health incident. Eventually I was "well" I thought.

Then in the summer of 2007 I noticed severe back pain when my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like this before. We ended up cutting our visit short and going home because of my back pain.

I told my doctor about it and she x-rayed my back but there was nothing on the x-rays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, or any other tests at all, for that matter. Nor did she refer me to a specialist. I was basically dismissed as a hypochondriac.

The pain got worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job, I was a college instructor part-time in the evening, and that required me to stand. I finally ended up in a wheelchair and persuaded the college administration to give me special tools that would allow me to teach sitting down. In addition, I was developing MANY other bizarre symptoms that helped to keep me in that wheelchair: muscle spasms in my feet, hands, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, lots of PAIN everywhere.

In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, RA, autoimmune hepatitis, lupus, and celiac disease. But the cause of my back pain and my neurological symptoms remained unexplained.

I joined several online health groups, including, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues. One of my friends there was shocked at the number of diagnoses that I had racked up in a mere 2 years and told me that I MUST be tested for Lyme disease. I insisted that it was impossible, but she kept pestering me until I decided to get tested just to shut her up! :)

Of course, I tested positive for Lyme, and have now been under treatment for 7 months with several different antibiotics. Unfortunately I have had Lyme for years now.....I believe I was likely bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that way, but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella) can definitely cause liver damage! And I apparently have all three. Unfortunately my hepatologist did NOT think of testing me for Lyme or coinfections....most doctors don't, actually. The over-the-counter herbal supplement I was taking apparently added to the liver irritation being caused by the tick-borne infections.

Everything seemed to be dormant for a time, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 to 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy. Spinal MRIs finally uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other issues such as vertigo, double vision, etc., can also be attributed to either Lyme or Bartonella.

In addition to all of this damage, Lyme disease almost certainly triggered the astounding number of new autoimmune diseases I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.

Mystery solved! :(

Please, any of you out there in diagnostic limbo....or even those who have suddenly had an EXPLOSION of diagnoses such as mine, especially autoimmune diseases, please get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).

Please visit the Lyme forum at plus the following helpful link for more info:

Melissa Kaplan, the creator of that website, has LOTS of extremely good links on that page to other informative sites.


Mac said...

Thank you for relating your excellent summary of what lyme can do and cause your body to do to itself. My prayers are with you. Have had Lyme for 12 years, spinal stenosis, herniated disks, neurological dysfunction, etc. Keep reaching out. Molly

JoAnn said...

Thank you Molly, my thoughts and prayers are with you too...