Wednesday, June 19, 2013

My Personal Lyme Story: Part 2 - Treatment

Let it suffice to say that I started writing this in May. Maybe I don't really need to say much more regarding how treatment is going. It's hard, it's working, it's like taking baby steps across a bed of hot coals.

But back to the beginning ...

When I learned I had Lyme Disease I spent a lot of time online researching different treatment protocols. There are many options from which to choose, but I decided that as I'd had it for easily a decade, I needed aggressive treatment. Having seen "Under Our Skin," I decided to go with an LLMD who followed Dr. Burrascano's treatment protocol.

Not as easy as it sounds ... first of all many LLMDs SAY they will follow Dr. B's protocol yet have never read it (really.) OR, they'll work that into their own favorite protocol (a deal breaker.) I made an appointment with a doctor in Chicago who, although controversial, had some great recommendations. The weeks/days leading up the appointment were fraught with fears/tears/and much indecision.

We all know I "plug in" spiritually and so was in almost constant prayer about this and try as I did, I did NOT feel settled or at peace about any of it. Vito always loves a chance to go to Chicago and go grocery shopping; I also know he was very, very, VERY concerned and wanted me to see a doctor ASAP. Vito is Mr. Prepared. Really, the guy should have been a Boy Scout (actually, it's just fine with me that he never was) ... my point being, when I am with him I NEVER worry that we will get lost, run out of gas, or anything! He puts my ability to plan to shame ... almost obsessively so. Needless to say, when he called me the night before we were to leave to ask for the address, I was STUNNED (and a little perplexed.) I mean, addresses and directions are HIS thing, not mine. Now I have to be sick AND figure everything out? Not cool, Vito. Not cool.

A little huffy I opened up my computer and typed the doctor's name into Google's search engine. BOOM. The Chicago Tribune front page popped up outlining his grievous offenses (all of which were ABSOLUTE deal breakers for me.) I have never been so upset in my life. Vito probably offered to come over for moral support. Who needs help crying? I was doing a really good job all on my own. In truth (as I reread this) he DID come over as I was actually, and I'm not even close to kidding, hysterical. He hung in there with me while I sorted things out, fully agreeing that trust is an issue for me and if I can't trust my doctor I'll NEVER have a good relationship w/that physician. Point taken, V. The next morning I called the doctor's office and cancelled. I'm sure the receptionist knew why and I didn't even feel good enough to murmur words of encouragement.

I decided to see a widely known LLMD in New York and had to wait about nine more weeks of agony. Vito flew into NYC with me, we drove to see my mom upstate and visited an awesome doctor and human being (as well as a nature photographer ... a HUGE positive indicator for Vito.) After a review of my latest lab tests (which were way more negative than those in August) and a brief physical exam he declared that SOMETHING was wrong ... but that he couldn't label it Lyme Disease although he was convinced it was a bacterial infection. Yeah, ooook.

As I had seen Babesia squiggling across a Darkfield screen he treated me for Babesia for a month, and when it didn't make a difference he took me off the med and put me on a single antibiotic. This went on for almost a year until I asked him, "We all know Lyme is a clinical diagnosis, what's it going to take to get one out of you?" When he responded with, "A Bull's Eye rash" I knew we were done. Really. Even disabled I know the difference between objective data and a clinical diagnosis. A Bull's Eye rash is pretty objective.

Quite frankly, I was terrified all over again as I knew I was going to be starting at ground zero IF no damage had been done by my previous treatment. I fairly quickly zeroed in on a couple of east coast doctors and then was directed to another website. It was intriguing. This doctor absolutely followed Dr. B's protocol aggressively yet while treating the WHOLE patient (diet/lifestyle/supplements/meds.) Having worked in the field of "Chronic Fatigue Syndrome" and "Fibromyalgia Syndrome" for 11 years this doctor was well acquainted with the myth that there is no root cause of either "syndrome,"(see also: collection of symptoms.) When tested for Lyme Disease all this doctor's former ME/CFS and FMS patients were positive. I had found my doctor!!!

About six weeks and many vials of blood later, a good friend of mine drove me half way across the country to meet the stranger who would become my new BFF (doctor style.) I IMMEDIATELY felt comfortable with the doctor and staff. My test results are clearly positive and I'll never have to take another Lyme test again to "prove" myself to ANYONE. To recap, in the bacterial department I have: Lyme Disease, Bartonella, Babesia, and Erlichia/Anaplasma. No need to run down the four viral components as there is no specific treatment for them.

So. The nitty gritty.

Drug 1 - No problem. (Treats Bartonella and Anaplasma)
Drug 2 a week later - A slight headache and dizzy for a few days. No big deal. (Treats Babesia)
Drug 3 a week later - This one is THE mainstay of Babesia treatment and, whoa. I sweat so much I felt like a Slip and Slide.
Drug 4 at the end of Month One - NOW it's getting tough. (My first official Lyme med!)

I am not yet cyst busting and my symptoms for the past month have been nothing but frightening. I held my own for the first couple of weeks and then hit the wall. (This is a figure of speech as I don't have the strength to hit a wall ... although I do have the lack of coordination.) I was no longer just feeling like I had been curb stomped. My glands have swollen so much it has become hard for me to turn my head. I drool. I stagger like a drunk. Sometimes I can't hold my head up. I have some nifty psychological symptoms.

Last night my IC (interstital cystitis) kicked in to the point where I couldn't move. Couldn't drive myself to the ER. Couldn't dial a phone. I felt like I was being continually stabbed with a dull knife. (Note added in June ... Vicodin worked but I was a complete blithering idiot in an email to my LLMD.)


And now it's almost mid-June.


And now it's a few days later.

The good news: Based on the past 60 days of pure torture I'd say I'm winning. It's just not fun. But I've always chosen winning over "fun" every day of my life. If the cliche' "what doesn't kill you makes you stronger" holds any weight, then I Am Superwoman.

THAT is how my treatment is going.

Oh. Another Lyme patient recently asked me, "Is there any other way to go through this?" Um. No. No. No. No. No. This is moment by moment, breath by breath aggressive warfare. There are no Warriors who have not gone head first into battle. Personally, I'm blasting away with all I've got (unilaterally.)

YSMV (Your Symptoms May Vary.)

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