Monday, October 18, 2010
(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, pictured above, used to say this quite frequently.)
I'm sharing the story of my chronic illnesses, how they developed, how long it took to diagnose them, etc., as a warning because it just may help someone who is in diagnostic limbo. My story is sort of a mystery novel...tracking down the culprit, step by step (with the occasional blunder off the track), until finally you have him cornered!
(NOTE: I posted this story on one of my other blogs some time ago, but it really belongs here. This post has been updated with new information as well.)
Background: my family has a strong genetic predisposition to autoimmune diseases; two of my dad's sisters died from complications of lupus, my dad had RA, one daughter has Hashimoto's thyroiditis while another has lupus. Three out of 5 of my grandchildren have celiac disease. Many of my cousins, nieces, nephews suffer from AI diseases as well.
I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. I wasn't diagnosed with Hashi's until my thyroid was basically dead though, in my early thirties, and wasn't diagnosed with celiac until much later in life...more on that further down.
One morning in March 2004, while standing in front of a mirror in the lady's room at work, I noticed that the whites of my eyes were yellow! I went to the doctor immediately of course, and it turned out to be a very serious case of hepatitis (my liver enzymes, AST/ALT, were above 3500 and normal is less than 40!!), 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. My doctors were just beginning to mutter under their breaths about a liver transplant...then I discontinued an over-the-counter herbal medication I was taking and things began to improve spontaneously.
Of course I was off work for weeks and weeks and then had to endure months of my skin and eyes being the color of a yellow highlighter (along with the not-so-hilarious comments from my colleagues about my resemblance to Marge Simpson), but I thought it was just an isolated health incident. Eventually I was "well" again....so I thought.
I recently remembered a cold December day in 2005 when I went to the doctor with a round red ring-like rash on my inner right thigh. I had tried to see my regular PCP, who was female, but she wasn't available so I saw the doctor covering for her, a male doctor that I never particularly liked.
I told him I thought I had ringworm, but couldn't figure out where I'd contracted it since we had no pets (our cat Cassidy had died 6 months earlier). The doctor stated rather condescendingly that he didn't think it was ringworm, but conceded it might be some sort of "fungus" infection and gave me an ointment for it. He really didn't appear to have any idea what the rash was, nor did he care.
The ointment didn't seem to do any good, so I discontinued using it after a few days. Slowly the red ring expanded but it faded as it got bigger so I didn't worry about it anymore. It was gone after a few weeks.
My only other new complaint that I had mentioned to the doctor during that visit was knee pain, which sort of came and went. It seemed to move around to other joints too, but it appeared most often in my knee. The doctor brushed it off as merely part of "getting older" and told me to take ibuprofen for it.
More than a year later, in the summer of 2007, I noticed severe back pain while 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 that before. We ended up cutting our visit short and going home because of the pain.
I went to see 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, nor any other tests at all, for that matter. Nor did she refer me to a specialist. I felt as though I was basically dismissed as a hypochondriac.
But the pain just kept getting 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 (thankfully sitting at a desk!), I was a college math instructor part-time in the evening, and that required me to stand.
I actually ended up in a wheelchair by September 2008, but 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: maddening muscle spasms in my feet, toes, hands, fingers, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, "brain fog", horrible daily migraines, and lots of PAIN everywhere. I was also inexplicably gaining weight....I had not changed my diet; in fact, I was eating less than before because I simply wasn't that hungry, as I was more sedentary. But I continued to gain.
In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, rheumatoid arthritis, autoimmune hepatitis, lupus, and celiac disease (all autoimmune diseases). I was put on several different medications, including the dreaded prednisone, which only exacerbated my weight gain. But the cause of my back pain and my weird neurological symptoms remained unexplained.
I joined several online health groups, including celiac.com, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues. I learned a great deal about celiac disease, and about its role in triggering other autoimmune diseases. I decided at that time that celiac disease had created the right conditions for me to develop all of my other AI diseases. I felt that I finally understood everything....well, almost, anyway.
But I still didn't know WHY my lower back hurt so bad that I could only stand or walk for a few minutes at a time, and why I had so many neurological symptoms. And was celiac REALLY to blame for ALL of my other autoimmune diseases?
In the meantime, one of my online friends (Alison) at the celiac forum was absolutely shocked at the number of diagnoses that I had racked up in a mere 2 years. She told me that I MUST get tested for Lyme disease. I insisted that it was impossible (I'm not the outdoorsy type, I hadn't been camping in years, I hadn't had a pet since my cat died, etc.) but Alison kept pestering me and pestering me until I decided to get tested just to shut her up.....LOL!
Ans of course, I DID test positive for Lyme, and have now been under treatment for 10 months with several different antibiotics. Unfortunately it appears that 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 dramatically, although there is a condition known as "Lyme hepatitis", but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella), can definitely cause liver damage! And I apparently have all three.
And the latest piece of information I found on the Internet has been invaluable: I found a website that discusses Lyme disease in cats, here. It was the "smoking gun". It saddens me to think that my sweet Cassidy may have suffered from Lyme disease until it was too late to save her (while her vet and I remained clueless), but I think this is the last crucial piece of the puzzle.
I really, honestly believe that I've figured out how and when I contracted Lyme!! Here is my hypothesis:
Because I got Lyme disease from SOMEWHERE, and because of the circumstances of her death and her symptoms prior to death, I feel fairly certain that Cassidy died of untreated Lyme disease. Probably she had carried a tick (or even ticks) into our house where a Lyme-infected tick eventually bit me. This almost certainly occurred in early 2004, just before I became so seriously ill. I did not notice the tick bite, nor any ring-like rash at that time, but this is fairly common.
Besides Lyme disease, I contracted at least three additional tick-borne diseases, and one of them was probably the cause of the severe case of hepatitis I came down with. The over-the-counter herbal supplement I was taking simply added to the liver irritation being caused by the infection.
Cassidy passed away from kidney failure in June 2005. She was quite listless for months preceding her death, and towards the end was refusing to eat or drink anything. We tried to hydrate her intravenously, but she was just too far gone.
Wait a minute, you say? What about the ring-like rash in December 2005? That's the physical sign of a tick bite, and generally appears within a few weeks of the bite! So must I have actually been bitten in 2005?!?
Well yes, that rash likely was erythema migrans (aka EM, the Lyme "bullseye" rash), particularly since it was associated with joint pain simultaneously, but the problem is that it could either have indicated the original bite, or merely been a recurrence of EM. EM can show up more than once after you've been bitten, and can even occur in late-stage Lyme, i.e., after someone has had it for a long time. This just adds to the confusion when you're trying to construct a timeline and figure out when you were first infected with Lyme disease!
But I should allow for the possibility that this WAS the original bite. So I will say that I either acquired Lyme + co-infections in early 2004, or late in 2005. Unfortunately my hepatologist did NOT think of testing me in 2004 for Lyme or any of the associated coinfections; doctors rarely think of doing testing for Lyme, actually. If I got it in November or December 2005, then Cassidy, rest her soul, had nothing to do with it.
In any case, I felt fairly healthy for some time after I recovered from the 2004 episode of hepatitis, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 (or 2005) until 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy even in very young adults.
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 helped to trigger the astounding number of new autoimmune diseases and related syndromes I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.
I still blame celiac disease for contributing to the problem, especially for the Hashimoto's thyroiditis and psoriasis which I developed in adolescence.
How I wish I had known much, much earlier that I should NEVER eat gluten!!
Medical mysteries solved! :(
So please, any of you out there in diagnostic limbo....particularly those who have suddenly had an EXPLOSION of autoimmune diseases like mine, 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 HealingWell.com 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.
If you read this far, I'm impressed!
Posted by JoAnn at 2:17 PM