Sunday, January 10, 2010


When reading my Lyme Disease (LD) posts from this summer, I was struck by the paradigm shift that has occurred in me since that time. To frame this, I need to lay out the two competing theories about LD today:

A. LD is a limited infection, easily treatable once diagnosed. First-line treatment is a month of oral doxycycline, sometimes followed by a month of intravenous Rocephin for severe or persistent cases. This is the position laid out by the International Lyme and Associated Diseases Society.

B. LD and its coinfections can be persistent, sometimes active, sometimes hiding. This makes it more like herpes. Cases like this require long-term antibiotic therapy. People can be symptomatic for years. This is the position of Lyme-literate doctors, whom you can find through the Turn the Corner Foundation or your local LD association.

I used to be firmly (and smugly) ensconced in the first camp, but three years of suffering later, I find myself hesitatingly in the latter. Hesitatingly, because I used to fancy myself some champion of evidence-based medicine. That worked for me until the evidence-based medicine didn't.

One thing to know about LD and coinfections is that the diagnostic tools are pretty bad. Most insurance companies only contract with LabCorp or Quest Diagnostics, which means lab work processed by other labs won't be covered by your insurance. LabCorp and Quest removed two of the most common proteins that can identifying LD (outer surface proteins A and B; for an explanation of why read this) from their serological tests. Currently, IgeneX is the primary lab used by Lyme-literate physicians to test for LD.

Another thing complicating Lyme diagnosis and treatment is the elusiveness of Borrelia burdoferi, which often quickly leaves the blood stream to hide out in nerve or brain tissue, which is how one presents with the neurological symptoms that I have. Those include lovely punctuated white-matter lesions that appear on MRIs of my brain. These lesions, which are one symptom of very critical LD, are similar to ones seen on patients with multiple sclerosis, systemic lupus, or cerebrovascular disease.

So here I sit, three years after first presenting with symptoms -- or six years, depending on if you count my diagnosis with fibromyalgia, which in hindsight seems to be my first presentation of Lyme. I am living with a real-life example of persistent Lyme Disease, which a year ago I didn't believe existed. The conventional medical path hasn't worked for me, and I'm embarking on treatment with a Lyme-literate doctor. My choice to embrace this path basically came at a critical moment, surrounded by evidence of so many seemingly disparate health problems including arm pain, stiffness, and baffling gastrointestinal problems that could not be attributed to anything else. One clear moment was a conversation with my medical nutritionist who noted that I didn't display any gastrointestinal inflammation markers, which usually shoot up at the sign of anything amiss that is originating from that part of your body. I said, "That means this is coming from something else, right? It's a symptom, not the cause." The minute I said it, I knew it was true. Have you ever known something, intuitively, is true to your bones? Like nothing can shake you from that truth? I've had it a few times, and this was one of them. I have been tested for everything under the sun, and yet the total portrait of my symptoms points most clearly to persistent LD. This all led me to a search for someone who would treat my whole being to help me heal.

My first stop on this new journey was with a naturopath who prescribed mega-doses of antibiotics, which is the standard treatment for persistent LD and coinfections. Unfortunately, she did some things to compromise my trust in her, and I decided to search for another practitioner. I found him, and I had to actually sign a waiver agreeing to not blog about him by name. So let's just call him Dr. F, and if you have any need to see him, email me and I'll put you in touch. Dr. F agrees that I am suffering from persistent LD and coinfections. He gave me a few blessed days rest from the antibiotics that have made my arm pain symptoms and excessive fatigue so much worse; this lovely phenomenon is called a Herxheimer reaction (known colloquially as "die-off"), which occurs when large quantities of bacteria are dumped into the body and create a toxic effect. In this case, they were being purged by the antibiotics. Believe me, I was feeling it! Tomorrow I start on a different pulsed antibiotic regimen, which means instead of taking them all on the same day, I alternate days, so I'm not pounding my systems as badly. I'll take minacycline and azithromycin instead of doxycycline, Rifampin, and azithromycin. Dr. F's hope is that this will kill the bacteria without causing such a severe Herxheimer reaction.

In addition to my $600 consultation fee, I spent about $750 on laboratory tests as part of my initial visit to Dr. F, which excludes what I will pay LabCorp for things like running a thyroid panel and checking my vitamin D levels, which we don't need to pay a specialty lab to do. Add to this my massage therapy ($110), psychotherapy ($160), a visit with my physiatrist-pain management doctor ($?), and a dental cleaning plus pre-paying for my two $%@#$ fillings ($255), and it was a very expensive week in health care! Oh, and I spent $347 on antibiotics at CVS. I will be happy to reach my $2,400 in-network deductible, though that won't do much to help me pay for Dr. F, who does not participate with any insurance, and my out-of-network deductible is close to $7,000 anyway. I might actually meet it this year, sadly. I am very, very grateful that we have the financial security to pay for this stuff.

My depression in November and December was really bad, but fortunately I've gotten that under control. Let's face it: being debilitated for three years can be pretty depressing! I had several well-meaning friends urge me to get back on antidepressants, but I wasn't interested in doing so as long as I stayed functional. Luckily, I've dodged that issue for the moment, thank God, by focusing on thoughts that help me keep my spirits up. The key seems to be staying in the moment, or at least the day. My mood heads south when I think of longer-term issues like, "When will I be healed?" When I focus on having the very best quality of life I can have today, I find my mood much more manageable. Meditation helps me put this into practice. Exercise definitely boosts my mood, so I should do that again, soon! It's tough when I have so much to do and so little energy; I really have to carefully mete it out.

I told my friend, S, that I felt like I had learned all the lessons my illness held for me, and now there were no more lessons, but I still suffer. She gently pointed out that maybe acceptance is now the lesson I have to learn. I've come around to that point of view, and I feel like if I can gain even a little mastery of accepting things as they are at this moment, it could be a watershed thing. I think of the cascading effects that would have on my anxiety and other challenges.

"And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation -- some fact of my life -- unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing, happens in God's world by mistake ... Unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes." -- Alcoholics Anonymous, p. 417


Maura said...

Thanks again Sarah for sharing your journey and experiences here. Even though we talk regularly, it's wonderful to read what you've got to say about your disease.

Rick G said...

Thanks for your post. Our lives have taken the almost exact same path in regards to our Neuro Lyme. I read it again and again. Well I have come to the conclusion that we can do much better with the help of a LLMD and pulsing ABX's. Now will be completely free of all bacteria and parasites? Time will tell. I do know I feel better now than I did 6 months ago. My hope is you will too.

Sarah said...

Thank you both so much. Your comments touched my heart. Rick, let's be in touch. Thanks!

Renee said...

Very thoughtful and wise, Sarah. I'm glad your depression is lifting, and encouraged to read Rick G's experience. More power to you! I can see you writing a patient's guide to Lyme Disease - it seems sorely needed, and you explain the bio aspects so well.

Stef said...


Staying in the moment is a beautiful, POWERFUL thing! And so is acceptance. : ) I’m happy to hear these are working for you.

And yes, do be careful with your energy; and here’s to recovering according to God’s schedule.

Big hugs, my dear.