Sunday, January 24, 2010

Ummm...Not So Rare: A Response to the Mercury News' recent Lyme article

This article came out Friday in the Mercury News: Learning about Lyme disease the hard way.

The short version is that Bart, the 69-year-old man featured in the article was diagnosed with Lou Gehrig's disease. His family was told he had two months to live, to take him home, and to call a hospice. Then his son remembered a tick bite he got six years ago near a percolation pond in Morgan Hill. They got another opinion. You can imagine the rest. The important thing for Bart is that right now he's on antibiotics and his family says he's improving.

I’m glad this article was published in a mainstream newspaper. We need this kind of awareness. Sadly, though Bart’s story is not unique, as the story implies. If you read Cure Unknown or see the film Under Our Skin you'll be inundated by similar stories of misdiagnosis.

You might have read a version of my story before. I suffered with undiagnosed Lyme for 20 years--was diagnosed with fibromyalgia, chronic pain syndrome, depression, Hashimotos, food allergies, and more. After my second child was born, all my systems crashed. Although I was diagnosed with Psoriatic Arthritis in 10/08, I had symptoms way beyond that and for a period believed it was actually MS. I was told to stop breastfeeding my five-month old baby so I could go on methotrexate--a chemo drug--indefinitely.

Not only did I find that prospect daunting, but the diagnosis didn't address all my symptoms (panic attacks, seizures, memory loss, reduced cognitive function, joint and muscle pain, eye infections, blurred vision, sore throat, jaw pain, digestive issues, chest pain, shortness of breath, tingling in my shoulders, hands, and feet, psoriasis and more) and caring for my two kids was nearly impossible. It sounds so crazy, you probably don't believe me. Fortunately, for me and my family's sake I found a doctor who DID believe me and dug deeper, did more tests, and I came out positive for Lyme and multiple co-infections (Bartonella, Babesia, Mycoplasma, and more).

It's been a year of oral antibiotics and I just recently had a PICC line put in for IV Rocephin. And I'm improving. As my primary care physician said (who originally was on board with the Psoriatic Arthritis diagnosis), I am a completely different person now than I was a year ago. She is amazed at my recovery and even asked for some names of LLMDs. If I had done the methotrexate, I would have only gotten sicker, since it's an immune suppressant and would have let the infection take an even stronger hold and then who knows what kind of diagnosis they would have come up with next.

I'm thankful beyond measure for my LLMD, my supportive family, and my own intuition and perseverance to find the right diagnosis and treatment. BUT, I continue to be pissed off at the IDSA, insurance companies, and corrupt or clueless doctors that continue to bleep with people's lives. The other four SpiroChicks have not the same, but eerily similar stories. And if you visit the Mercury News site and read the comments posted at the end of the article you'll read even more of the same stories about people suffering from Lyme.

No, Bart's story is not unique, and Lyme disease is NOT RARE. While I send my healing thoughts and prayers for Bart's recovery, I hope this story continues to ignite the fire in all of us Lymies to continue the fight for awareness, funding, and legislation to protect doctors and patients. And I really hope Patty Fisher does a more in-depth story about the prevalence and real risks of Lyme in the Bay Area.

9 comments:

Casey said...

Wow, you story is sooo much like mine it is scary. Thank you for posting this, I appreciate it and I am going to go check out the article. s

lymenaide said...

Feels like an up hill battle everyday doesn't it. I'm not talking about dealing with our health, I mean educating the media and the public.

I think I've responded to about 5 articles just this month. I am so glad the articles are in the paper, I just wish the reporters would dig a little deeper and write a real story.

I'm so glad you didn't start the chemo drug Kim! Thank goodness we are in an area where we can find knowledgeable doctors!

Kim said...

Casey--thanks for stopping by. I'll check out your site! Would love to hear/read your story.

Ashley--I soo appreciate all the work you put into your research, writing, and responding to articles. You're a rock star!

Lyme is real said...
This comment has been removed by the author.
Lyme is Real said...

As one of the Spirochicks misdiagnosed with Lupus, I took the chemo drug, CellCept. CellCept and Prednisone compromised my immune system and made my battle against Lyme that much harder to fight. I'm currently undergoing my third picc line and we're now tackling both the Lyme and mastoiditis, chronic sinusitis, and infections in my jaw, the latter three all a result of my compromised immune system. It is impossible not to wonder where I would be today had I not been misdiagnosed? Education is an uphill battle, but one we need to fight. Lyme is not rare. It's the diagnosis that's rare.

Kim said...

This is so right on: "Lyme is not rare, It's the diagnosis that's rare."

Third PICC? Ugg. Say it isn't so. Hang in there.

Alix said...

I agree with Lyme is Real - it's the diagnosis that's rare, not the disease. I, too, was misdiagnosed with autoimmune disease before Lyme and the prednisone drove the disease much further into my CNS. when I went off a year of Pred after giving birth to my twins, my health was a total wreck, never to recover again.

In 2003, my father died of ALS in New Hampshire. He lived on an organic berry farm and had just won his age group (60-something) in a New England swimming competition. He got knee surgery for arthritic knees (classic Lyme connection, no?) and began his neurological decline shortly thereafter. He was tested for Lyme at the California "lab that specializes in Lyme testing" (per the article) and it came back negative. But now I don't know, maybe the tests were equivocal and his docs didn't know how to interpret them or his tests were negative and missed a case of active Lyme. I'm glad he at least got tested, but, alas, it didn't save him. He would have tried antibiotics had there been anyone to make that connection back then. A year of a gluten free diet slowed his decline. He died 9 months after going off the diet. I can't know for sure if it was connected, but his decline was rapid after that.

Kim said...

Oh Alix it does make one wonder about your dad. I forgot when posting this that he was diagnosed with ALS.

Lyme is real said...

I would wonder the same, Alix, and am sorry for your loss. Yes, the immunosuppressants allowed the Lyme to penetrate deep into our CNS, but we're still hoping to turn this freighter around.

Kim, my girls are doing well on orals after their first picc lines. I'll keep my fingers that you'll be one and out, too! : )