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 über "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! ;-)

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!

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. 

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.

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.

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.