Since this was written in an open format and with the public in mind as a post on her blog (and graciously shared) , I will allow it to stand as such and make only spelling and grammar corrections as needed. For more from this brave lady’s blog see the source list at the back of this book.
My struggle with Lyme Disease has been a long time in the making, while its existence in my life has only been known as such for maybe 5 months. So I guess I will start at, what I thought was, the “beginning.”
My husband and I moved to Wisconsin in December of 2007, after the stick showed two lines and not just one. Two lines after we had said we were done. Two lines promising a bulging belly, late-night feedings, and diapers… more diapers… We thought we were through with that aspect of life. Our two chestnut-haired beauties with the dazzling eyes were in our lives, and all was “right” with our world. And then there were two… lines, that is… making three.
Until this point, we had always lived in our home state of Michigan. Him from the southern, and I from the northern lower peninsula. We never dreamed of moving to “America’s Dairyland,” after all, what was there in Wisconsin, but cheese and beer? So we thought. Not only were there amazing people to add to our “family,” and natural beauty rivaled only by few… We soon found out just one *small* thing that hatched into our lives here in our own back yard.
It was a peaceful Sunday morning as I awoke to the sounds of traffic in the street below our second-story guest bedroom window. It was September the 5th, 2010 and I couldn’t have been happier. My parents, who still live with most all of the rest of my extended family in Traverse City, Michigan, were here for a much-anticipated visit, and we were making the most of every moment with them.
The night’s rest was much-deserved and needed as we had just spent most of Saturday at an old engine show somewhere in Wisconsin that I had never heard of. My dad had found their website online and decided that they needed to make a trip to visit us, so that we could all go and enjoy the old engines, watch the milling of cornmeal and buckwheat flour, enjoy the various flea market offerings, and of course, the vast array of fair food, complete with homemade ice cream, churned by an old engine.
The day was long, with lots of walking and more walking, a coal-powered train ride, a view of the tobacco farming on the fairgrounds, and food. We all had a blast. Even bought a really long-handled bristle brush to clean out the lint trap area of a dryer from a flea market vendor! What a successful trip.
Little did I know it would be the last day I would walk normally…
Early Sunday morning, when I awoke to the inner-city sounds of Racine, WI, (spanish polka, loud mufflers, engines purring at the stop light, and dogs barking to be let back in to our neighbors’ houses) I never could have imagined what was in store for me just seconds away.
As I inhaled that first conscious, refreshing breath… the kind that clears out all of the sleepiness from the lungs… and I stretched that first morning stretch… the kind that invigorates each muscle fiber and invites the body into the land of the upwardly mobile…Ohh, it felt so good to know what it was to be alive and rested after a full day like Saturday. And then, those precious few seconds between stretching and relaxing were finished… And nothing in my life was ever the same again.
As soon as I had finished stretching, feeling the invigoration that comes from a well-rested body being revved back into action, every muscle in my arms and legs began to ache and burn like I had never experienced before.
“Well, that wasn’t normal,” I said as if I had added too much salt to the broccoli.
And for some reason, unknown to me at the time, this phenomenon continued to happen faithfully, each and every time I contracted a muscle in any extremity. Not many days later, this sensation was accompanied by exhausting fatigue, horrible knee pain, and an embarrassing gait that included the occasional buckling knee.
I was also introduced to muscle tenderness to a crazy degree. Anytime my cats would step onto my lap was reason for banishment to the basement… And let’s not even get into the fact that I have three young children under the age of 10 when this all happens… Yes, kids don’t take directions too well when they are seemingly absurd: “Please don’t kiss mommy’s arm; it really hurts when you put pressure on it.” Or “please don’t push on me to sit yourself up, your elbow is killing me!” Like they could believe that someone as small and dainty as they are could damage their normally tough-as-nails mommy.
As I began to think about these things that I had been afflicted with–truly–overnight, I also thought about the sharp, skin-tearing sensation of pain that began happening in my left big toe whenever I bent it–like kneeling on the floor would allow for: the feet/toes point and the real fun begins! This pain had begun little by little in August, right around the time I had a whopper of a bladder infection. As the days wore on, this pain increased until it was pretty much unbearable. I taught myself, a southpaw, tonot kneel onto my left knee when helping my toddler get dressed in the morning. Not an easy task. But the pain was an excellent reinforcer. This pain was enough to freeze my moment into an excruciating agony that seemed to last decades until I was able to breathe again. [Spoiler alert:] Eventually I lost the feeling in the right side of my left big toe. It has never returned.
The only other major thing (I might add) that I had been through in the recent past was back in the spring of 2009 I was diagnosed with Interstitial Cystitis by a “really smart” gynecologist. With one prodding of my bladder during his physical exam, I about flew into the ceiling. He decided that I had IC; gave me–you guessed it–pills; sent me on my way… Oh, but not without the extra-long list of newly prohibited fodder: no tomatoes, onions, vinegar (including all condiments), citrus, and pickled herring. Not making this up… that was on the list! There was oh, so much more, but you get the point… Now, back to the future…
After a few weeks, I decided to check in with my chiropractor, who also is into “whole body” treatment… you know, not your typical “back-cracker.” He ordered blood work to check vitamin levels and other things like inflammatory responses, rheumatoid factors, and major indicators of vital organ problems–which would mean instant referral to an MD. Everything came back within normal limits, except for a few things, but nothing that would lead us any closer to a diagnosis. Sadly, he thought it time for me to check in with my internist.
Well, the days went on… I continued in my whirlwind of symptoms while preparing to put doctors at ease from their worries of “how will I afford my Jag payment this month?”
My first visit, after my chiropractor was to my internist. This was actually my first visit with her, as I didn’t have a “regular” doctor yet. I never needed one. I moved here, found a gynecologist and a chiropractor. That’s all I ever needed… Until, well, you know. She, of course, sent me to the vampires for massive amounts of tests: Thyroid, Vitamins B12 and D, Iron, Ferritin, CPK, LDH, urinalysis. All things point tonormal.
Her reply? “Now Fibromyalgia is not a diagnosis of exclusion, but seeing as I can’t find anything else wrong with you, I think you have Fibromyalgia. I’m going to send you to a rheumatologist for a consultation. And in the meantime, please take this prescription for Lyrica. It’s for Fibromyalgia and should help you feel better.”
(She possibly continued under her breath… “Oh, it’s habit-forming and only works when it gets built up in your system. Have fun with addiction.” Wait, maybe that was my thought after reading up on Lyrica.)
Go ahead… Read her reply again. I know, it’s comical. I’ll wait.
While waiting for my rheumatologist appointment, I began tostrongly feel that my problems were neurological, so I called my internist to ask for a change in plans. She agreed to allow the Neurologist appointment, BUT I had to keep my rheumatologist appointment as well.
Okay. Fine. My first mistake. Well, I took the Lyrica for a few weeks, and then stopped around the end of October for two reasons. One, if I was going to see a new specialist, I wanted my symptoms to be fresh, so I could explain what was happening.
Two, my husband and I were taking a cruise to the Bahamas to celebrate our ten years of marriage over Halloween weekend (coincidence–our anniversary is in June; this is when the cruise line could fit our free cruise in). I wanted to have freedom to have a little fun on the trip.
Onto the Rheumie! His first response, after I go through my symptoms is, “I think this is neurological.” So, instead of sending me to a Neurologist, he orders an EMG, which is a neurological test. I am happy with this. My second mistake. During the long waiting period for this EMG (more on that later) he puts me on Neurontin, Tramadol, and Flexeril for pain and muscle spasms, which I had begun experiencing regularly.
Oh, and, my third mistake, I canceled the Neurologist appointment because I assumed a rheumatologist knew what he was doing ordering neurological tests.
Oh, he felt around at the pressure points that would indicate Fibromyalgia, and yes, they were tender. Mywhole body feels the way they do. But he looked me in the eye and told me that I didn’t have Fibro.
The EMG, done by a new doc–a Neurologist–was painful, to say the least. I thought I was tough. But when electrified needles are poked into your muscle tissues that are already very sore and extremely sensitive, things happen. One needle hit right onto a nerve in my right quad. All the pain I had felt over the last several months was amplified and packed into one moment. Things happened. Involuntary tears. Sobbing. Bleeding at the site. Gasps for breath between sobs. Wow. I’ve had six surgeries–three of which were C-sections. Nothing was as painful as this. I’ve even had a fingernail ripped out. Well, maybe that was worse because that pain lasted longer. But that’s the only reason I would categorize that as worse than that one needle.
RESULTS! Rheumie comes in, and reports the findings: “you’re normal. Let’s play around with medicine dosages. Then come back and see me in four weeks.” Oh, that’s gonna fix my problem. Add more milligrams of pain meds. I will be cured. But I say okay. My fourth mistake. One nice thing here was that he believed me about my pain and issued a 6-month temporary disabled tag for my car. Six weeks go by… Finally in to see the Rheumie.
Dr. Rheumie waltzes in, acting as if he didn’t know me. At all. He asks, “What are your primary concerns/issues?” I think to myself, “REALLY?!?!?!” So I remind him. He asks, “You’re seeing Dr. So-and-so also, right?” Wow. “Dr. Who? No. I’m not seeing this So-and-so.”
“Oh, sorry. I don’t have your file.” MentalGASP! Mental I’m falling onto the floor in astonishment. “Well, I think this is neurological, so I’m going to send you to a Neurologist.” Mental jaw drop and seizure!!!
My fifth mistake… I never once questioned him. I never said, “You told me this at ourfirst appointment, and could have saved me the time, pain, and money by sending me right away! I want a refund!!!!!”
Off I went to the local Neurologist… Just after the new year (welcome to 2011). Not that we have only one in this city of 80,000+ people, but she was my local Neuro…
She didn’t like the way my knees reacted, or didn’t react, to be precise–so she ordered an MRI of my lower back. Mind you, she did not even begin to approach the symptoms that I had come to her about.
There wasn’t much use telling this doc what was going on and it only took me three phone calls to figure this out. I still wasn’t understanding just what this MRI was going to prove, given my current symptomology.
My hubby and I both knew this problem was neurological, and were even thinking it could be MS, so we asked, three times, for a full MRI instead of just looking at my lower back. No, no, and no.
The MRI went as planned. And low and behold, what they found was: nothing. So, during the follow-up visit, she told me that since I had already been through the ringer, er, EMG testing, with the local docs, she wanted to send me to aNeuromuscular Specialist up at the big city’s state-of-the-science teaching hospital for a more in-depth EMG and possibly other testing. Well, at least we were getting somewhere… Our vehicle was soon to have the miles to prove it.
Now, something amazing happened at this point in time. A dear friend of mine (from California) had seen the documentaryUnder Our Skin and just happened to be over for a visit and mentioned Lyme Disease to me. Right away, I told her that I had been tested, and I was negative. Little did I know… I was extremely closed off on the subject of Lyme, as I just “knew” (just like the doctors) that I didn’t have it.
On my life went, waiting more than 4 months for my specialist EMG appointment, and in the meantime, my symptoms grew. I had been bogged down with the aching, burning muscles, ridiculous gait, no stamina to walk briskly even up my stairs, extremely, painfully cold feet and hands, and now new things… I had begun to forget things more and more. When I would type, which I did often, my fingers stumbled dumbly over the keys, like a physical dyslexia of sorts. It was ridiculous. And the worst part was that every time I stood up, I began to find myself dizzier and dizzier. No fun, especially when one is caring for three children under the age of 10.
A week or so after I saw my friend and her luggage to the car that was waiting to whisk her to the airport, I happened to reacquaint myself with another old friend –one of my best friends from high school in Michigan. I thought I remembered something about her having MS, and so I thought I would just talk with her to get her view on the whole subject. One of the first things she asked me was… you guessed it: have you been tested for Lyme? Well, I had told her, like I told my other friend, no, no, this isn’t Lyme.
But then she went on to explain how there are several types of Lyme tests, and that the main one isn’t very accurate, blah, blah, blah… I didn’t pay much attention, really, because I thought, “I have been tested… The modern medical community surely would give me the better of the two tests. I’m sure it’s not Lyme.” Oh. Yeah.
While waiting for my big Neuromuscular Specialist appointment, I had a vitamin level followup visit with my Internist. I thought, “It can’t do any harm to ask for another Lyme test.” So I did. She told me in the strictest of confidence in her training, that the test I had earlier had certainly given any infection the proper incubation time to show a positive result, but that she would be happy to run another test, if it would make me happy. Guess what? It was negative. Same testing procedure, and it still came back negative. What is it that Einstein said about how to define insanity? Let’s see… doing the same thing the same way and expecting different results. Yeah, it’s something like that.
But for the time being, I was set at ease.
It must’ve been maybe just a few days after my long overdue phone call with my high school friend, when an acquaintance, who really had barely known me for a minute, asked about the possibility of Lyme.
I couldn’t believe it! Here I was, not really wanting to talk about my physical dilemma with a freshly-made acquaintance, and they were shoving their Lyme theories down my throat! I was astounded. Truly astounded.
I mean, how many times must someone be bludgeoned over the head by something as far away from the “truth” as I had been? These people were unrelenting! But I digress… there would be two more people actually who would ask me the $5 question before I got the gumption I needed to do what was needing to be done.
Well, it was turning out to be a long four-and-a-half months to wait for this special specialist, so I decided to watch a little Netflix. Now… what to watch? Oh, I know! Dear friend spoke about, what was it? Under Our Skin… ooh, look! It’s on instant streaming!
After watching, I knew I needed to be tested again. In fact, I was so convinced, that I forced my husband to sit in bed, hovered around an iPod, to watch the film. There was something so…familiar about the film. It was like looking into a mirror… a funhouse mirror, where things like gender and severity get distorted, but a mirror nonetheless. I connected with these people! There was something so very common between us; something common that had invaded and stained the various cloths we were cut from.
We finally got to the appointment: the big EMG! And everything went wrong. What was supposed to be an evaluation and EMG was “mistakenly” scheduled as only an evaluation. The doc didn’t have any time whatsoever to perform such a test, and “today is just an evaluation.” Well, it’s a good thing–a really good thing–that she was nice.
Actually, she was amazing! After telling her her all of my symptoms, past and present, she looked at me with unflinching certainty and said, “I can look at all of these symptoms and paint them into the same picture. These are all telling of one thing…”(No, don’t try to read ahead. She doesn’t say Lyme.) “This all paints a picture of Autonomic Disorder, and when we do your EMG, I also want to do some autonomic testing. Can you be here all day?” Well, yes, I could, and let’s get that scheduled.
So certain she was in her hypothesis, she had no problems upgrading my temporary disabled tag into a permanent one. Yes.
Well, the days dragged on, and the symptoms continued. My dizzy spells were getting worse and worse. About 98% of the time I would nearly black out when I would stand up. Everything was getting more and more difficult. I didn’t like all of this waiting, but what could I do?
Finally the big day arrived. The testing was done, including a sweat test. I got to lay in a 125˚ room for 30 minutes to see how I would sweat. Guess what? I didn’t. That was a problem. About 6 weeks later, when I got the rest of the results, I found that I also did not do so well on the other autonomic testing.
I knew I should’ve studied harder! >wink<
I received my diagnosis. I had Autonomic Dysfunction with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome, to be exact.) So now, I was looking at a life with:
- Interstitial Cystitis
- Autonomic Dysfunction
- POTS–a heart condition!
What in the world? But then I remembered something that someone very wise had told me after he had prayed for me. “When you get your diagnosis, don’t take it as the final word.” I always thought that meant that I was going to be supernaturally healed. I had known healing in my life before… Of course that was what this prophetic word meant.
Well, to make sense of this, I remembered my request that was still not verbalized. I asked my new neuro what she thought about the possibility of Lyme was for my case. “Your symptoms don’t really line up with Lyme. Some of my patients kind of do, but I wouldn’t put you anywhere near the front of that list.” I argued that the main test was about 50% inaccurate, and that I really wanted to be sure, so she ordered both the Elisa AND the Western Blot test for me, just to appease me, really. I got my blood re-drawn that day.
A few weeks after my third/fourth Lyme test combo, I got a letter with an enclosure from my really, really nice neuro. I read:
“The screening test for Lyme Disease had a low positive titer, but the more sensitive test, the Western Blot, was negative. Both are included for your review. This is consistent with a negative Lyme test.”
I turned the page and saw:
(Among many other “bands” [different antibodies all for different aspects of Lyme] that were tested and found “absent”)
My P41 IGM band read: “Present (A)”
A little lower, after more “normal” readings, came:
Lyme IGG/IGM Antibody 0.00-0.90 Index “1.71 (H)”
Lyme Antibody Interpretation “Positive (A)”
I knew immediately that my life really would never be the same.
All those tests.
All those doctors.
All those vials of blood.
All those envelopes with fancy pages inside, explaining all that we owed.
All those days and nights of unrelenting symptoms.
All those days where we discovered the onset of new symptoms.
What would we do?
What would it take?
I thought of Miracle Max and his witch–I mean–wife fromThe Princess Bride. “Bye-bye! Have fun storming the castle! – Do you think it will work?” “It would take a miracle.”
I went online and started looking for anything–anything that I could get my hands on. How do I find one of those Lyme Literate MDs I had heard so much about in the documentary? So I went to their website, which took me to a place where I could privately email and ask for a list of LLMDs in my area. The problem was that my “area” all-of-a-sudden included places like St. Louis, MO. Not really what I had in mind. So I kept searching; after all, that’s what those engines are for, right?
I found MDJunction’s Lyme Disease group and joined. Right away, I was hooked up with some names of LLMDs who wereactually in my own state. Hooray! I also was guided, by the moderator of that group, to my own state’s Lyme Disease support group’s site where I begged for admission. Of course, I was accepted, and began the days and weeks of reading everything I could get my hands on about this new anti-Lauren, also known as Lyme Disease. It would be a nice long time before I could get in to my scheduled appointment, so I might as well hang in there and study up on this enemy’s war games.
For those who know me from my Wisconsin Lyme friends, you understand the title here. If you are not one of those precious lives afflicted by Lyme Disease, you may not.
Here’s the skinny. Lyme Literate Medical Doctors (LLMDs) are pretty much on the DL (the down-low for those of you who didn’t know that slang :D). Why is this? Well, there are a number of insurance companies (who don’t want to pay for proper treatment) and other not-so-good guys who would like to see these docs lose their license as they actually prescribe the proper amount (which is long term) of antibiotics. The good guys use the ILADS (International Lyme and Associated Diseases) training instead of the IDSA (Infectious Disease Society of America), who basically got it wrong. It seems the wads of cash in the IDSA Lyme guideline writers’ breast pockets made their arms bend funny and their pencils write funny things like “there is no such thing as chronic/late stage Lyme, and if someone has Lyme, give them 2 weeks of Doxycycline and they are cured.” Therefore, we Lymies keep our doctor’s name private.
Okay, so I had my first visit to my LLMD one week ago today. His name is . . . irrelevant. HA! Didn’t think I was that forgetful, did ya? Okay, so he was incredibly irritated that just looking at my Western Blot proved that my body was fighting Borrelia Burgdorferi, AKA the bacteria that causes Lyme Disease.
Question: How many doctors does it take to read a Western Blot/Lyme Test?
Answer: Indefinite unless they’re LLMDs; then you need only one… with one eye opened and both hands tied behind his back.
I began treatment the same day. Oral antibiotics. I am actually taking a half-dose for the first two weeks, and then ramping up to the full dose. I like to think of each one as a little bomb that I send down the hatch. Makes me feel like I’m channeling my inner warrior… princess. (Insert Zena cry here.)
This week has been interesting at best. I knew I would react to the warfare. And I have. There is something of a final assault that these little spirochetes have in their arsenal: neurotoxins. When they are drilling around (literally: they are shaped like a corkscrew, hence the name spirochete [pronounced spy-ro-keet] and they drill through anything and go anywhere), they release these along the way. When they are killed, in the theme of a grand finale, they release all that they have, thus making the victim – that would be me – sicker.
I have dealt with lots of joint pain, headaches, muscle pain, and rib pain. My feet have hurt a bit, but not horribly. This is expected, and normal. Some people react worse than others… but if you don’t “herx,” (short for Herxheimer–the doc who discovered this reaction) then it is quite probable that you don’t have Lyme. I am just EVER thankful that I haven’t had the stomach issues that some get…
In addition to the bombing assaults, I also detox, detox, detox. Baths with Epsom Salts, Hydrogen Peroxide, and freshly grated ginger – which leaves a nice fresh smell, that’s for sure. This combo sucks the toxins out of my pores. I also am drinking plenty of freshly-squeezed lemon juice in my water. At least 70 oz. (of water, that is) each day.
So I’m one week into my treatment. I am excited to keep bombing the “keets,” and to feel some relief in a month or so… maybe two. Or so. I don’t really know. It’s different for everyone. And largely can depend on how long the person has been infected. For me, that may be most of my life minus about 7 years. It could mean only close to four years. But Doc was pretty certain I probably was infected at both times, with the re-infection bringing about some more symptoms, etc.
Thanks for hanging in there. Air raid sirens will be going off soon… Less than two hours until my next assault. This warrior is signing off for now. God speed.