The Old Cynthia

It's been months since I've posted a blog on Writing Lyme. Time to update and share some good news!

A re-cap of my Lyme history (see back posts for more): I became very ill in summer of 2007 (extreme exhaustion/heat intolerance/cognitive issues/balance problems/shooting, stabbing, grabbling, tingling pains) and after seeing a slew of doctors, specialists and undergoing many tests, I was diagnosed with fibromyalgia. My then-primary care doctor gave me that label (through her assistant, on the telephone) with these words—and I quote: "Let's say it's fibromyalgia so your insurance company will pay for your Lyrica." Lyrica helped my nerve pains.

However, I got sicker and sicker. I was unable to work outside the house due to fatigue and cognitive issues. I stopped driving. I asked my doctor repeatedly about Lyme. She tried to placate me with "it's not Lyme" but she did do two blood tests for Lyme (both of which were negative). To her credit, she tested me extensively for MS.

I decided that I didn't want to just "say it was fibromyalgia" and began seeking alternative (i.e. holistic) treatment. I underwent more extensive Lyme testing. Some indicators were present, although not enough for the current CDC-approved test to be positive. I underwent treatment with shots of gamma globulin as my immune system readings were very low. I underwent chelation therapy for high levels of toxic metals detected in my blood.

I continued to spiral downward. I found a doctor closer to home (we'd been seeing one fours hours away) and within thirty days of our first extensive consultation, he diaganosed me with Lyme based on symptoms, risk factors and a CD-57 blood test.

My treatment (oral antibiotics) began in the fall of 2010. As is often the case, I got much worse before I started getting bettter. I had the typical Herxheimer reactions (all those Lyme buggers being killed off released toxins into my system, thus my symptoms became exaggerated). I was in bed for a month straight. I saw little to no progress for months. The oral antibiotics began kicking my butt (digestive issues/dental issues). My Lyme doctor presented us with the option of self-injected antibiotics in the form of intramuscular shots of Bicillin-LA. We agreed. A visiting nurse came to show me how to self-inject. The shots were extremely painful and at the optimal dose, I injected both legs every three days with 1.2 million units of the thick white stuff. The shots hurt. The legs hurt afterwards. It was terribly inconvenient to travel with this medicine as it had to be refrigerated.

But after fifteen months of treatment, I am finally done. I am "back" to my normal self—almost. If there is any Lyme left, my body seems to be fighting it. I know full well that the likelihood of a relapse is high, and if that happens, I will see my LLD (Lyme-literate doctor) again and probably go right back on Bicillin. I am left with some symptoms. I still tire easily. I still cannot tolerate heat. But I am a completely different person than I was a year ago—the old Cynthia is returning.

No full-circle story is without its irony, though. That doctor who labeled me with fibromyalgia dropped me as her patient because I saw a doctor whom she felt threatened by (in that I was getting better under his care). She saw me at my worst and she saw me after Lyme treatment. I attempted to discuss the Lyme diagnosis, the controversy surrounding dignosis and treatment options, and she put her hand up (as in "talk to the hand") and left the room. She still insisted it could not be Lyme (because I did not test positive) and that my Lyme doctor's treatment was too controversial. One day I got a knock at the door and a certified letter stating that she was no longer my doctor.

This is probably for the best. I  have found a primary care doctor closer to home—one who is whole-health conscious, admits he is not a Lyme expert, but is willing to work with my Lyme doc if necessary.

I am optimistic about the future; I am glad I educated myself about Lyme; I am glad I did not give up, and I hope others who are struggling with this bastard of a disease can glean a bit of hope from my story. I am forever indebted to my LLD for my diagnosis, treatment and recovery, and to my husband for his unending support.

For Lyme-disease education, I highly recommend the documentary Under Our Skin (Open Eye Pictures, 2008)
http://www.underourskin.com

and the book Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim (BioMed Publishing Group, 2009)
http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801

I will continue to update this blog with info on Lyme. Those outdated, exclusive CDC guidelines for diagnosis are being questioned (thank goodness) and much work is being done on the research front. If you think you have Lyme, keep going until you get answers. Do not give up. If you have Lyme, have hope—because there IS hope.

The Disability Question/New Groundbreaking Lyme Book

Earlier this week, I saw a new neurologist. We hit it off right away (that hardly EVER happens with neurologists!). This is a neurologist who is completely open to the topic and diagnosis of chronic Lyme disease*. This is a neurologist who told me she could see my illness. While my Lyme symptoms are technically invisible, there are a few discerning people who can see them in me—in the exhaustion written on my face, in my struggle at times to speak/think with clarity. She noted that while my eyes are bright (lively, cheerful), she sees that I fight to keep going. She is a rare gem indeed. As she was going over my history and my neurological symptoms related to Lyme, she said offhandedly, "So I assume you are disabled from the State?" In her work, she treats many Veterans who are truly disabled.

Loved ones with all good intentions have suggested that I look into becoming declared disabled (I assume so that I can collect money). They see the difficulties I face. They see the difficulties my husband faces as he tackles many of our household chores, and as he drives his exhausted Miss Daisy (that would be me) arouind, as he works from home which, in itself, is a 24/7 job.

My reply to my neurologist was, "But I don't want to be disabled." Alone, that is not a good enough reason—I don't want Lyme; I don't want to weigh twenty pounds more than I should weigh; I don't want to ask for help when I need it; I don't want lots of things! But I quickly added: "I can work. I work from home. I can't teach the night classes I used to teach, but I can work. I ...."—explaining to her what it is that I do.

I publish a poetry magazine. I edit books. I take photographs and sell greeting cards with my nature photographs on them. I do whatever it is I can do...around my Lyme disease, according to my physical and cognitive limitations.

I don't begrudge anyone disability who needs it. That's what it is for. My first comment to my husband after our meeting with the neurologist was, "My father was disabled." And he was. As described in my last post, my father was disabled with polio to the extent of not being able to use his arms—or breathe on his own. He collected disability. But he also learned how to write by holding a pen in his mouth. And he taught me never to take what wasn't mine and never to take what I didn't need. I may need that kind of help someday. I could even need it tomorrow. But so many, many people need it today.

And I am recovering. I have cyclical backslides (a part of living with Lyme) but overall, I am becoming my old self. On the good days, I feel it, see it, taste it. Until the old self is back to stay, I'm going to try and focus on my abilities and not my inabilities.


*Speaking of doctors who are open to discussing and treating chronic Lyme disease, check out this newly-released book by Burton A. Waisbren Sr. MD FACP FIDSA. Dr. Waisbren, Sr. is a founding member of the ISDA (the prestigious medical group that looks down on Lyme-literate doctors who treat chronic Lyme and who diagnose Lyme based on criteria other than the current unreliable, exclusionary guidelines). This book will lend much credence to our cause!