Officially official. How's that?

Well, I had my follow-up appt. with my LLMD today. All meds seem to be doing what they need to do. All systems seem to be going well. Well, most systems.

We looked over my Thyroid tests (3 of them) over the last 18 months, and she was happily surprised that mine is good. It actually is trending to lean toward the hyper- side, rather than the hypo- side. Most Lymies deal with the latter. Not me! Who knew?

So now we are going to spit in some tubes tomorrow... Of course, when I say "we," I mean "me." We are testing for adrenal issues now, via a saliva cortisol test. Four times tomorrow, I will fill a little tube with my spit. I know, you're just dying to be me tomorrow! Now that urge to chew tobacco can be somewhat squelched I guess by my impending experience. Wah-wah-waaaaaahhhhh.

Now, down to the "officially official" part... The day of all days. That would be today. For today, any voices in my head that whispered "Yeah, but it might not be Lyme..." can officially Shut. Up.

I got the results from my latest Lyme test. Yes, I tested again after 5 weeks of antibiotics. This usually always stirs up some more antibody action, and this time, it did.

My first "band" that came back positive was band 41. This can actually be a non-Lyme (Borrelia Burgdorferi) bacteria antibody. Basically, it can appear when we fight a whole array of things, especially any other pathogens with a flagella (tail).

Today's results speak to the scientific parts of my brain. Because today, band 23 came back "Equivocal." This is a word that means, "we see it there, it's just pretty light." Band 23 is only specific to Borrelia Burgdorferi, the "Lyme bacteria." 

The point here, is that if they see it, then it is there. It's not a mirage. It's there. So what if it's light? My first pregnancy test for my 3rd daughter came out barely visible, but that did not mean that I was possibly or partially pregnant. And certainly not not pregnant, as you can tell... I did mention her up there, didn't I? ;-)

So there we have it. It is officially official. Just in case those naysayers try to rain on my antibody band parade. The umbrella is sufficiently raised.

My name is Lauren and I am a Lymie.

A–little A-linia goes A–Long way...

Well, I am day 5 into my Alinia treatment and still at a half-dose. Thankfully the wobbly sensations are subsiding. I still do experience them, but not to the degree of my first night.

I make sure to take a detox bath about every 2 or 3 days, and that really does help. This bath has 2-3 cups of Epsom Salt, 2 cups of Hydrogen Peroxide, and 2-3 tablespoons of freshly grated Ginger root (thanks to my wonderful hubby who does the grating!).

Even with these baths, I still do experience issues. The most prominent seem to be pain (shocker) in my hands, knees, and upper arms, as well as legs, and lower arms, but they are not as terrible. I also have the worst neck pain. I am having a hard time with the Doxycycline in the mornings. I take this to make sure the Babesia doesn't become immune to the Alinia. The Doxy makes me extremely nauseated for about 45 minutes. So I know there's an end in sight, but man, those 45 minutes just have to be right when I'm trying to get my kiddos ready for school on a time limit. Ugh. (Just need to keep telling myself, "This too, shall pass!")

And the herx reaction that wins the "ridiculous" category is the jolts of jerking that happens when I'm trying to SLEEP! Two nights ago it was my arms. Last night it was my abdomen. I can feel an "energy" building, just like in a "restless leg" type of situation, and then – involuntarily, might I add – I jerk/jolt/twitch/whatever-you-want-to-call-it... I'm sure my husband calls it annoying. ;-) It keeps me awake, to be sure. So then I sleep longer in the morning, to catch up on the lost sleep from the early night hours.

So there's the skinny on the 'Linnie (AKA Alinia).

Kermit said it best: "It's not easy being green..."

Alinia...

Well, today I started a new treatment... For the Babesia... The co-infection that is, among other things, attacking my heart. I'm going to say that if the following phenomenon has anything to do with my new medicine, life will be quite interesting. And while I know that medicine usually doesn't show its effects for a day or so, is this possibly from the Alinia? Seeing as that is the only thing that has changed, I can't help but think it is so...

I began Alinia – well, the generic kind from Canada, because the real stuff costs over $1,300 PER MONTH and I'm not Mrs. Moneypants – and 10 hours into the first dose and I am noticing something. I am wobbly. Like every minute I get a little more wobbly.


My legs are trying to give out on me, my knees hurt, and every muscle in my body that normally holds various body parts up/in place has become very unsure of what its primary function is... Result: many jerky/sloshy movements. I probably look like a drunken sailor/Parkinson's patient rolled into one cute little hat-sporting, scarf-wearing Lymie. Hat and scarf are staples all day long as I am perpetually C-O-L-D (pronounced: freezing). The cold lifestyle is all part and parcel to the Autonomic Disorder. I just can't regulate my temperature correctly. Fun.

Anyway, that is the update. I'm wobbly. And I've had to hit the delete key twice as much as my normal Lyme-induced typing dyslexia typically demands. Yuck.

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.