Friday, December 30, 2011

How about an update? Whoops... It's been a while.

Well, I have now been in treatment for my lovely Lyme for 9 weeks and let me say that the first 5 weeks were great... not with how I felt... but with the progress I know I was making.

The next 5... well... not so great.

Here is what has happened. (AKA: the Big Update from the Slacker.)

As you have probably read in a previous post, my first Lyme doctor had his license suspended. I was devastated. However, before I had gotten set up with him, I had made an appointment with another Lyme doctor. But she was a few months out as far as appointments go. So after I had been acquainted with my first doc, and had been on the Clarithromycin for 4 weeks, I had my first appointment with the new Doc.

She is amazing. I am so glad I hadn't cancelled that appointment! There was always some little gut feeling deep inside me, that would not let me cancel that appointment; even after I had such a successful first visit with Doc H. So, here we are. Not an orphaned Lymie, and still under a doctor's care. YAY!

Back to the timeline... The Clarithromycin hits deep. After a few days I began to feel the herx. (Remember, that's the bacteria die-off, resulting in a major neuro-toxin expelling, making the Lymie sicker than before.) Daily, I took steps to detoxify my system, and daily, the herxing increased. I was happy about this, as it meant I was killing these little buggers.

After 3 weeks, I began sweating again! This is part of my autonomic disorder that technically isn't curable. Things were starting to happen, and while I knew it was a long road ahead, I was encouraged.

About a week after my appointment with the new doc (5 weeks into the Clarithromycin treatment), the antibiotic puttered and stalled out. Of course. So I called and she ordered Doxycycline, 100 mg, 2/day. She also had ordered Alinia for my Babesia, as it is really affecting my heart. Well, the Alinia is ├╝ber "expensivo," so we had to order it through an international pharmacy. And the waiting game began... Only taking the Doxy, and feeling my Lyme symptoms creep back in daily.

So, now, as I sit in the dawnings of the new year, I feel as if the first inklings of my healing were disrupted and a little bit in vain. It's hard to feel this way, after having reported to so many family and friends just how well things were going, and how much improvement I have seen.

I am about 100% back to my pre-treatment Lyme symptoms. The sweating has ceased again... the muscle fatigue, the aching, burning arms and legs, headaches, awful, awful brain fog and memory issues. Etc., etc., etc. It's pretty hard to be a writer with brain fog.

"Uh, honey, what's that word where it's like you really focus on things and pay special attention to detail and etc.?"
"You mean 'devoted'?" 
"Yep. Thanks." 

This convo seriously happened yesterday. And the typing dyslexia... yeah, that's back. It takes me about twice as long to type things as I have to go back and fix mistakes. And I'm way too perfectionist-oriented to allow them to stay that way! Maybe one of these days I will give an example of what my initial typings look like... but not just yet.

Okay, so this is my update, to date. :) I will begin treating the Babs (Babesia) just as soon as I get home from our New Years travels, and will make sure to report in way more frequently. I also have an appointment with my Lyme Doc (yes, the new one), and will have the results of my newest Western Blot Lyme test. It will be nice to see just what has stirred up after the 4 weeks of antibiotics (at the time of the testing). The antibiotics always stir more of the bacteria into the blood stream, so they are more detectable and the body shows more antibody activity... hopefully.

Have a happy New Year everyone, and just say no to Lyme in the coconut! ;-)


Sunday, November 13, 2011

On the On-Ramp

Well, this past Wednesday I hit the 2-week mark of my treatment. I ramped up from a 1/2-dose to a full dose of the Clarithromycin, and about 24 hours later, I felt it!

I have to say, sometimes antibiotics leave you with nasties. This one is no exception. I have this little friend that is with me all day, every day. His name? (Yes, notice it's a boy, LOL) Mr. Awful-Rancid-Disgusting-Taste-In-My-Mouth. Unrelenting. Unless I am about an hour late in taking my next dose. :)

Today was the day of days for herxing. Remember, that is the reaction we feel from the bacteria die-off, leaving their endo-toxins (neuro-toxins) for us to feel sicker. I felt everything I had experienced so far, but more so. If there was a magnifying glass for feeling, I was under it today.

I almost didn't go to church. I felt awful: horribly aching/burning arms and legs, joint pain, stomach upset, intestinal cramp-ish feeling, eye sensitivity to light–would actually leave blackish blind spots after looking near a light. It was a pretty bad day today.

But I am hopeful. This means we are killing these enemies of mine. I have been taking baths to detox from these toxins about twice a week. Epsom salts, Hydrogen Peroxide, and freshly grated Ginger in a nice hot bath. Sucks out the nasties while leaving me with a fresh Ginger scent. :) Lovely.

So that is the update here. Borrelia Burgdorferi dying... Lauren gaining ground.

Now, I also believe I have one or two co-infections; Bartonella and Babesia, to be precise. Many Lymies have more than just Lyme Disease to battle. The Bartonella does wreak havoc on muscles and joints, among many other things. So if the Lyme is waning, the Bart may well be thriving. I will begin treating for the Bart after getting used to the current treatment.

Stick around folks... Lots of fun and surprises around every corner! Until next time...

BY THE WAY... The medical board/attorneys received an overwhelming number of letters in support of my doctor, as well as a petition with over 2,000 signatures... They have already come to an agreement: he is no longer in danger of license suspension!! Praising God right now!

Thursday, November 3, 2011

My Lyme Doctor – URGENT

I feel the need to post today as this morning when I awoke and checked my email from bed–something I do to help gently nudge myself into the land of the awake–I read that my Lyme Doctor is under attack. 


He is scheduled for a hearing to suspend his license. Why? Interestingly enough, they don't like the way he speaks... and a few other nonsensical issues. I am pasting a portion of a letter from a Lyme network friend. (Now that he is under scrutiny, my doctor's name is known.)


"The final report as filed by the doctor's that observed him found him deficient in: 

* Patient interviewing and communication skills
* Record Keeping
* Overall Fund of Medical Knowledge
* Mental deficiency due to diagnostic procedures and hesitant speech patterns

35 years of practicing medicine and they don't like the way he speaks. 

Based upon these findings the WI. Department of Safety and Professionalism {specifically, lead investigator Arthur Thexton} has issued a petition to have Dr. Hoffmann's medical license suspended immediately pending a final decision by the WI. Medical Examining Board. 


We must have everyone write immediately on Dr. Hoffmann's behalf. They can pass an order to suspend his license immediately and then go through the years long, laborious process to get it reinstated. I spoke personally with Doc last evening regarding this matter and he's devastated. The man can't even afford an attorney. Of course, what doctor could charging $100 per-office visit and taking Medicare and Medicaid patients ? It's time we gave back to him." 


Here's my thought: I really don't think this is solely about the above bullet points. This is a very much shared view by many of his patients.


PLEASE: Even if you don't know him, even if you don't know what is exactly going on, KNOW THIS: Dr. Hoffmann is a spectacular doctor. He is the most down-to-earth doctor and knows what he is doing. Many people in the Lyme community tout him as one of the best in the midwest. He is also the least expensive Lyme doctor in the United States. You read that correctly.


This is what happened to many docs including ones in the documentary Under Our Skin, which is with regards to Lyme Disease... the truth about Lyme Disease, that is.


PLEASE sign this petition to help save my (and hundreds of others') Lyme Doctor!!!


http://www.change.org/petitions/save-dr-hoffmans-license


Thank you all. 

Wednesday, November 2, 2011

A "H"eaven-Sent Lyme Literate Doctor! And A Vocabulary Lesson


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.

Long post this week. 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.

Saturday, October 29, 2011

Yes, Virginia, There Really IS a Lyme Disease!

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)"

And then:
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.
All this time.

What would we do?
What would it take?

I thought of Miracle Max and his witch–I mean–wife from The 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; afterall, 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 were actually 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.

Took the Bait and Now I'm Hooked


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
  • Fibromyalgia
  • 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.

Friday, October 28, 2011

Two and a Half Friends


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 an 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 went and 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.

Neurologically Speaking...

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 my symptoms that I had come to her about.

There wasn't much telling this doc 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. 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 a Neuromuscular 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 documentary Under 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 even 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.


Monday, October 24, 2011

No "Rheum" For Me

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 cancelled 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. My whole 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 tissue that is 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.

Waiting... waiting...

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." Mental GASP! 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 our first appointment, and could have saved me the time, pain, and money by sending me right away! I want a refund!!!!!"

Internally speaking...

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 to normal. 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 to strongly 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.

Sunday, October 23, 2011

Feel the Burn!

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, to not 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.

Wednesday, October 19, 2011

You put the Lyme in the Coconut...

Well, this is the inaugural post to what I pray is a smooth blogging experience... Lord only knows what's in store.

Where to begin?

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," afterall, 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.