I recall being up at a workshop at herbalist Pam Montgomery's when she was on the western side of the Hudson River. I noticed that she had Sweet Annie on her list of herbs. I'd only known it as a lovely ornamental and asked what it was for. She smiled and said "Lyme Disease" knowing my history with this particular plague. She gave me Eileen Secor's name and number and said I should call her.
It turns out, Eileen was the head of a large Lyme Disease support group, and her own daughter contracted Lyme SO badly that at the age of 14 or so, Katie wound up in a wheelchair. Knowing there's nothing like MamaPower to get the job done, Eileen put her head together with Katie and Pam and worked on a long and elaborate protocol which got Katie OUT of that wheel chair. Long and elaborate or not, I was ready to try anything, I was tired of hurting. I think it was my fourth case that had me connecting with Eileen.
She called her therapy Synartemistic, as it was based on a concept that both the healers and scientists agree on, that spirochetes will become more active when the moon is full - and so 'pulling' on the fluids in our bodies. Not only active, but their outer covering thins, making them more susceptible to being killed off by whatever means you might be trying. This shift in fluid can also make symptoms flare up without it actually signaling a new infection.
Eileen and I consulted by phone, and she recited the list of herbs I needed to take in which order during which weeks. One of the problems with this protocol is 'patient compliance' as it's quite complex for anyone suffering from what I eventually began to call AlsLYMErs - falling down a rabbit hole in the middle of a sentence. AlsLYMErs also manifests as that terrifying experience that too many of you reading this have HAD. Driving down a road and suddenly having no idea on earth where you are. When I saw that exact scenario unfold during the film “Under Our Skin” many years later, I dissolved in tears. It was really complex, (Eileen’s protocol) but I kept at it and have to say I truly DID feel better than I had on just the antibiotics.
Until I was felled yet AGAIN. Round FIVE. This time I went up to visit Eileen in person, and the drive was QUITE the ordeal as I was feeling feverish. I remember that night, as we were talking, my fever went higher and higher until I began to wonder how I'd EVER drive home and then it BROKE, never to return. During this visit, she presented the protocol in great detail, and basically gave me her blessing to help other people with it, but not to publish it like some cookie recipe. I gave her my word. We spoke of finding the Gift In The Illness and I was feeling SO hideous that that was a concept I couldn't even comprehend. I told her of my deep fears of losing yet another job from being so sick and becoming homeless. For some reason she gets up off the couch and leaves the room, returning with a tiny, dark blue glass turtle in her hand. She tells me it was given to her by a very dear friend and for whatever reason, she felt VERY strongly that I was to have it now. I left her full of hope that I would ultimately BEAT this.
My phone rang a few weeks later and I don't even remember who it was who told me, but Eileen had died. It wasn't anything to do with Lyme; to my knowledge Eileen had never had it. It was a heart blockage, of which she had a family history, that took her at the age of 46. To say I was devastated was putting it mildly. Suddenly our meeting had such a shade of 'here, take this, I'm leaving' to it. I looked at the tiny blue turtle next to my bed and cried. During this siege I was hit with Bell's Palsy and the right half of my face seceded from my brain all together, and I couldn't call Eileen about what to do. My heart was beating irregularly and I was scared. My chiropractor helped me with the Bell's Palsy with homeopathic nux vomica so it didn't last more than a couple of weeks. I finished my three-week protocol and felt pretty well recovered again.
Until.....you guessed it......sixth time down. I don't know if I was bitten more than once, but my right hand swelled up one night SO quickly and SO painfully that packing it in ice was less painful than the pain coming from it. The next morning my right knee joined the dance. I'll never forget the look on my students faces when I came limping into class with my arm in a sling to keep the hand up and just looking GRIM. This was BAD. This one wouldn't let GO. Except for cleaning some houses and teaching a few classes, I was basically unemployed and had no health insurance. Let me interject HERE that with every new diagnosis I DID take a one-month round of Doxycycline and then used Eileen's herbs to FINISH the job.
My body was becoming SUCH a dysfunctional disaster that I just lay in bed WONDERING how I would ever make it to the bathroom. It's one thing to limp on a swollen knee, but my hip joints were going on me. Weaving its way through all this was a menstrual pattern caused by growing fibroids that was causing heavy bleeding and anemia. I was a mess. I remember lying in bed and seeing more than one friend just show up unannounced bearing groceries. I had stopped working and couldn't pay my rent any more. Any of you who are reading this WITH Lyme know how badly it handles stress.
Finally a friend took me to the 'emergency room', such as it was, in the tiny town I lived in. They plopped ME into a wheelchair so I wouldn't fall down, took a blood test, shot me up with a huge anti-inflammatory and sent me home with a Rx for Ceftin (HORRIFYINGLY expensive) and instructions for filing with Medicaid. But here's the DETAIL. I'm sitting in a wheelchair waiting for the anti-inflammatory to kick in so they can watch for any reaction and I'm going through the pennysaver when I see MY apartment for rent. My eviction notice had come only days before.
The next day, I'm in the low-fee clinic meeting with a doc who drains sinovial fluid from my knee (looked like chicken soup!) and decided to try a new approach. Amoxycillin plus Probenecid. What? What's Probenecid? He explains that it will keep the Amoxycillin in my system longer (as we know you pee out 95% of it) I ask if there are any side effects (I had a FEW brain cells left) he casually says oh, possibly bone marrow problems (WHAT????? How am I supposed to know if I'm having BONE MARROW problems???) He says if there's any unusual bruising or bleeding. At this point I'm ready to grab him by his tie and drag him across the desk, but I don't have the energy. HAVE you looked at my chart????? Don't you see I'm FLOODwoman????? I bleed for a full week and then need a week to RECOVER?????? "You'll be fine." he says.
Two days later.......I hemorrhage. My life is just falling out of me. And then I begin to shake. All over. Most terrifying sensation I've ever had. I grab the phone, get hold of this doc and tell him something is very VERY wrong.....He asks if I can call my own ambulance.......................(I am NOT making this up) I call 911 and pass out on the bed. When I come to, EVERYbody's here. Fire guys, paramedics, guys in pick up trucks and I look over to see some guy with a GUN on his hip surveying all the herbs I have hanging from my ceiling. He says "We could keep the drug squad busy for a MONTH in here" I suddenly laugh and scare the paramedic out of his mind.
They haul me off to the hospital in an ambulance and you know what? An oxygen mask is a beautiful thing. Partway there, I'm drifting in and out of consciousness and I realize that I purely have no thoughts as to whether I'm going to make it or not. I am just in free fall. It quite possibly the most free moment of my life.
But something happens and I'm popped back into my body and know I've got a DAY ahead of me here. I remember that it's Halloween because one doc in the emergency room just can't resist telling me I look like a GHOST. They decide to do a D&C and my gyn begins talking to me about a transfusion. Dr Probenecid shows up looking all nervous and just basically wants to be assured that I've STOPPED taking it.
So next morning I'm treated to THREE PINTS of someone else's blood. (and whoever you were, BLESS you) The month of November I spend feeling vaguely human, although my eviction takes effect Dec 1st. Early in December, staying with dear friends, I hemorrhage again. They were out for the evening and I was there all alone quite sure that this was IT. I always figured that if I ever got THAT close to dying, there would be something to fight against, not just my life pouring out of me. I made it, and the next morning I was on the phone BEGGING for a hysterectomy. My gyn had been suggesting it for a good long while as my fibroids weren't easily operable. We both knew I wouldn't live through another period like that. Done deal by early January. (and to Angela, my oldest friend in all the world, who came right up to donate MORE blood, there isn’t enough thanks)
<on to the later cases>