Friday, December 7, 2012

Getting PICC'd On and More...

Life with Lyme is never dull. Except when you can't do anything but lay on the couch and cry... My intentions were to write this post a few months ago. Yep. Lyme. No fun. So here we are. Fiiiiinally updating. Hopefully will be more caught up and can continue on a more normal schedule of updates.

School started and with it came a new set of obstacles such as waking up at the right time to get all of my kiddos to school at the right times. 4K drop-off at 7:50. Back home until 8:15 to get my middle schooler off to school by 8:30, and then a half-hour wait in the van until the 9:00 hour when I can let my 2nd grader out for the start of her day. The last two schools are literally 90 seconds apart. I sit. A lot. :)

The girls have been doing great with their treatments. I really hope and pray that we won't need to be treating much longer, at least for the Lyme and Bart. The Babesia needs to be treated for about a year or so, and that's ok. Except for the part where insurance resets in January and we will have to begin paying for the Mepron again. That's the über expensive medicine. $5,000 for 3 months for one person. Our co-pay is 10% at best.
Here we are at our quarterly post-blood draw Starbucks treat. Nothing makes a girl feel better after a poke like a nice decaf Latte, Hot Chocolate, Steamer, or Caramel Apple Spice!

As for me, just like the summer, my downward spiral and plateau down there in the valley continued. My LLND and I discussed a different plan, which included me being joined in holy union with a plastic tube, better known as a PICC line. Until then, I got to stop taking oral antibiotics – as they had pretty much shredded my stomach – and begin a month-long regimen of 3 times weekly Bicillin injections, which my amazing hubby got to administer.
Bicillin. A thick white goo, three times a week. 1.5" long needle,  has to go ALL the way into my hip muscle. And it's not a thin needle. It's actually quite large. 21 Gauge if you know what that means.

I had another Western blot (Lyme test) and this time, even the CDC (Center for Disease Control) couldn't deny that I am POSITIVE for Lyme! The longer you treat, the more your body can identify the bacteria and begin to make more antibodies against it. We needed a CDC-positive test result for the insurance company to approve and pay for the PICC line.

The paperwork was finally processed and the appointment was made for me to travel 3 hours to a hospital in Appleton, WI, to get my PICC line. This is not a surprise to Lymies as we know how much scrutiny our doctors are under. This was the only hospital the company could find that would allow my doctor privileges to order my PICC line. Serious drama in the medical world revolving around a tiny spirochete called Borrelia Burgdorferi (the Lyme bacteria) makes getting treatment frustrating to say the least!!

My hubby drove up with me (of course) for my appointment. A Peripherally Inserted Central Catheter (PICC) was placed in my right arm, above the elbow, on the inside. This is good for up to a year, and Lord-willing, will remain until it is no longer needed.
The amazing lady who inserted my PICC line. This is a surgical procedure, so Nick had to leave the room for the actual insertion.
 They had to try 6 times to get the catheter inserted properly. It goes up a vein that travels through the shoulder and then joins the Jugular (which we don't want) and then the Superior Vena Cava (which we do want). This is where we want the PICC – it stops just above the heart, so that the medicine gets mixed with the largest volume of blood and sent throughout the body immediately. She finally got the PICC placed and off we went to radiology for a chest X-ray to make sure my PICC looked good and in the right place. Hooray! It was, and we headed for home.

Here it is!
So now I had the fun of learning how to infuse my meds, how to flush the line, and keep it in good condition, including not getting it wet. Press 'N Seal is good for this! So is my husband, who washes my hair for me. Yes. That's right.

Unfortunately, after the first week we discovered I have an allergy to adhesives, like my father. So we switched to hypo-allergenic dressings (called a tegaderm) and very specific tape called Mefix. The following picture shows my arm, finally healing from the blisters and sporting a new clear tegaderm.

Yes, it's the same arm... the first picture was taken in a mirror. :)
There were more blisters, but you get the idea. So now my life would consist of twice daily antibiotic infusions, along with taking oral meds as well. Each infusion takes about 45 minutes start to finish. I do get weekends off, though. The new protocol seems to be working. I hope. It runs on a 4-week cycle, and about week 3 I began to see some improvements.

I could actually walk (still slowly) up my stairs without stopping half-way. My legs were still in a good amount of fatigue and pain at the top, but I could do it! Well, at the end of week 4, I took a major crash and it seemed that all the progress I had made was completely gone. I had more fatigue than I had had in weeks, the limb pain and fatigue was back in full-force, and my migraines came back.

This disease is frustrating, to say the least. My LLND and I are figuring that this is a result of the die-off (that's the herx, or Herxheimer, reaction) from the bacteria letting go of all the neurotoxins which really make you feel sicker. Much sicker.

Okay, this post is long enough. I will continue (hopefully) and keep posting regularly again.

Peace, love, and cider mugs to you all. Stay well.

Wednesday, October 10, 2012

Summer Lovin'... Not So Much

Well, as we continue our saga of the "lost summer," things get a bit uglier, with some fun interspersed. We arrived back home to Wisconsin on the last day of June. Without so much as a seemingly good night's rest, we were unpacked, laundered, re-packed, and on our way to Michigan. It was our traditional stint at the National Cherry Festival in Traverse City, MI, where I grew up. Each year, we visit my relatives and have a blast playing "fudgie" (which is what northern Michiganders call tourists as people come up north for the fudge!!), get some much-needed R&R, and let the kids get spoiled just a bit by Nana and Papa and the aunts and uncles.
Here's Abigail... Our yearly tradition is to take the girls' pictures in front of the Cherry Festival signage. It's a great little growth chart of sorts! Oh, and these are the "pose however you wish" shots. Fun stuff...

This year, our trip included borrowing a wheelchair from my parents' church so that I could get around the big festival. Note to all: those wheelchairs with four small wheels are a joke! Don't ever use one unless you KNOW you will only be on paved surfaces!! Whew, Nick had a nasty time pushing me around on any dirt, gravel, or grass! I almost got dumped more than a few times!

After 5 days of this trip, we were back on the road for home for about a week. Then we were off to Indiana for our church's annual conference for 3 days. We had a tremendous time, even though I had to stay in bed for much of the fun/free time. Too much pain and fatigue, too little was the ability to "beam" places. Ahh, where's Scotty when you need him?
Miriam, AKA Vanna...

I am happy to report the rest of July was spent at home. This summer meant a lot more pain for me. I am sure the travels didn't exactly help the situation out... On top of the "normal" muscle fatigue and deep muscle pains, tremors and twitchiing, I also began having pretty severe joint pain. The worst aspect was my knees and elbows. More on that later...

Anyway, I began having headaches again as well. I had lived about 3 lovely months without the migraines, and now they were back. A much-needed respite, I guess.

August came, and with it, the sadness of saying goodbye again to Hannah, our former exchange daughter. She flew back home to Germany and began finalizing things for university in the fall. As for us, it meant one last big trip. Back to Michigan we went; this time to Holland, for a vacation with Nick's family.
And Rebekah, the show stopper, apparently.

I always love these trips we take. Relaxing, fun, and his family is truly a blessing in more ways than I could tell you about in a day. Let's suffice it to say that they are truly my family as well. I am blessed to have an amazing family that I married into! Two great families. It's amazing and wonderful.

This time around, I had to take things so much slower, so much easier. I made the mistake of going to the beach with the family. It is on Lake Michigan, and on a sand dune. Even though we picked a spot that was barely any incline-on-sanddune-walking at all, I still, very much, over-did it. Laying in the sun and walking in the water... whew! LOL And then, the walk back to the car... Up that tiny incline, well, compared to the rest of the beach's dunes, but it was big enough to make most people a bit out of breath, and for me, that meant stopping every 4 or so steps to rest. It was pretty intense. And I paid for it pretty hard the rest of the day and into the next two days.
All three Lymie munchkins. Adorable, no?

Life with Lyme + Co. is certainly a perspective changer.

The rest of August was spent getting all three of our Lymie kids ready for school. We now had a middle schooler, an elementary schooler, and a 4-K-er, ALL AT DIFFERENT SCHOOLS. This was shaping up to be a fun [read: difficult for mama-also-known-as-bus-driver] school year!
And who could forget Hannah? Our kid away from kids... Away from country... But not away from our hearts. Love you Hannah!!
I guess we have made it through August. September will follow in a few days. And so much more!!

Peace, love, and cider mugs!

Saturday, October 6, 2012

And another one's gone, another one's gone...

Yep, Another one bites the dust! Puzzle piece, that is.

My parents called me the other day to let me know that my dad got his Western blot results back from IgeneX. They faxed them over to me and I interpreted them.

Yes, Virginia, there is a puzzle piece! He is positive for Lyme. And while that is such sad news for me, it is also another clue to my health mystery-history. It looks like I was most likely born with this, just like my kids were.

You see, Lyme disease is sexually transmissible. While there has been a lot of debate over this aspect in the past, more and more studies have shown that yes, it can be transmitted through intercourse. And yes, my mom will still be tested, but we know that after nearly 40 years of marriage to my dad, either she gave it to him or he gave it to her; more than 36 years ago. My guess is that she gave it to him, as he seemed to be in better health then her in my early years... but we Lymies know that it can lay dormant for years without indication, so we will never really know this for sure. It's the whole chicken versus egg debacle all over again! ;)

If you haven't yet seen it, please check out my new pages within the blog. I have added tabs at the top. Please share this blog with everyone you know. Times have gotten very tough, financially speaking. We thank you for your time, friendship, prayers, and support.

Also take a look at our new video on YouTube!

I will be continuing my summer update soon. Just wanted to get this piece of news out to you tonight. And if you pray, please pray for my parents. After years of strange and rare illnesses, they finally have an answer to a huge question that has been looming ever since I found out my life was plagued with Lyme.
The question of Lyme is no longer without answer for them. And it's going to be a long road.

Lots of love,

Monday, October 1, 2012

So... Enough About Me, What Do YOU Think of Me?

Well, as promised, another update. This time I get to talk about me. Fun fun... LOL

The summer started out sl...BAM/WHACK/POW! fast. Yeah, we thought it might have a nice, slow introduction. You know, take its time to slowly walk around us, whispering sweet nothings into our ears... introduce itself... "Hi, I'm summer, I like ice cream for a hot midday treat and breezy evening walks by the lake," that sort of thing.

Instead, May (yes, still spring, technically) presented itself with myself hosting a screening of Under Our Skin – if you still haven't seen this documentary on Lyme, it's high time you did! – then another "journey," as my youngest calls it, to the kids' LLND (Lyme Literate Naturopathic Doctor [who's also a nurse practitioner] for those who weren't really sure but felt silly asking), then it was off to help hosting the Wisconsin Lyme Network's annual "Lace Up For Lyme Walk" at the Milwaukee Zoo in – of course – Milwaukee. A few various doctor's appointments and the month of May was well-rounded out.

June hit with a whirlwind as well. My older kiddos finished up the school year, including my Abigator graduating from 5th grade. Terrific ceremony; we especially were filled with pride and joy to hear her name called more than 5 times for different honors and such including peer mediation, which is a terrific honor at this school, and other accolades. I shot how-to videos with a friend, had more doctor appointments, held a support group meeting (every month, actually), and then we were off to Florida!!!

An 8-day vacation for the whole family, including our former exchange daughter from Germany, who came back again this summer for a visit. We went through Tropical Storm Debby for half of this time, so we weren't able to wear me out so much. Probably a good thing!

Here is a short photo journal (so many more pics were taken of course, but you can see the highlights...)
We got to stay at Dinsey's Magic Kingdom until it closed. Watched the castle turn brilliant colors, and then some cool fireworks.

The "kids" on the ferry boat ride home... Yes, Dad was one of the kids at this point.

Rebekah was with me in the wheelchair most of the day, especially at night. She was plum tuckered out.

Me and Hannah over my shoulder. Friends/family forever.

My Lyme babies' first dance in the Atlantic. Quite the windy day! They had a blast.

Here we are, blue at Kennedy Space Center. Sorry for the grainy quality... Low light n all...

We even went up in space! Oh... Wait... This was a presentation. Either that or there's a huge, enormous threat shaped like a man attacking the earth... ;)

Through all this my Lyme treatment was pretty much steady on, status quo. We rented wheelchairs at the parks as I can't do much walking. I guess it's better to have my hubby push me around in a wheelchair than for me to not go! It was still good fun. Especially to be able to give this experience and spend this amazing time with our kids. Even the biggest one from Germany.

I didn't really have any changes in my symptoms... until July.

And we will pick up from here in a day or so.

Thanks for sticking with me folks. Peace, love, and cider mugs!

Saturday, September 22, 2012

Ever Eat Big Bird? My Kids Have...

So, it is 11:05 PM and I am laying in bed, not sleeping. Again. I actually fell asleep around 10:45 and then 10 minutes later... BAM. My mind woke up – vibrantly. I remember a few über important things that need to get done tomorrow and this following week, and then it hits me. My blog. I promised an update and my day got so busy that I didn't follow through. So... here I sit, late at night (well, for this household anyway!) and write.

SO last time I wrote was in May. A LOT has happened since then. I will post over the next several days so as not to give you a migraine from a loooong blog post. Who reads the super long ones, anyway? ;)

Okay, let's start with the kids. I had posted last time that pieces of my Lyme life puzzle were falling into place. Well, another one came crashing into its unsolicited spot about two months into my oldest daughter's Lyme treatment. Babesia. After just two months, the Borrelia load had diminished enough to give the Babesia coursing through her veins, literally, enough wiggle room to pop up and say "hello! I'm here and I'm gonna throw a party! When? NOW!"

She was exhibiting classic "Babs" symptoms, and so began the puzzle-piece-fitting and the expensive treatments. She started on Alinia, which I was, and still am, taking, along with the antibiotics to keep the Babs from becoming resistant to the Alinia, and also to combat the high strep load and the Borrelia.

One month later (the two younger girls started treatment a month after my oldest), my other two began showing signs of Babs as well. So yes, for sure, I knew I had contracted it all together. And yes, they too had to address this awful parasite/protozoa as well.

The nice thing is that we reached our out-of-pocket max for prescriptions at the end of August, so now we aren't paying anything for prescriptions. As long as they aren't filled for more than 84 days at a time. I kid you not. Gotta love insurance. Really. You do. Because Mepron – the anti-malarial drug used to treat Babesia that is the #1 choice of LLMDs – costs over $5,000 for a 3-month supply. Multiply that times 3 kids, for at least 9 months treatment, if not a full year. That's $60,000 for ONE. CO-INFECTION. For 3 kids. Forget the Lyme, the Bartonella, the Mycoplasma Pneumoniae and all the pro-biotics and supplements we have to purchase as well. And the LLND visits. Really.

Oh, and Mepron... is yellow. Sorry. not "yellow." It's YELLOW!!!!! This is nothing compared to... well... let me just show you. This is Miriam. She just took her Mepron. We can call this pic "MirPron."

Drum roll please...

So yes, while our insurance is finicky about how many days we can get at once, at least we have it. We are truly blessed. Because as of right now and the rest of the calendar year, we don't have to pay for any meds.

Okay... we traveled A LOT this summer and the kids did terrifically. I am happy to say that we started a new school year with a new middle schooler, a second grader, and a 4K-er and they are all doing so well! Adjusting to changes can sometimes be really quite difficult for kids with Lyme + Co. But so far, this has been a smooth and wonderful transition. I am truly truly blessed. We all are. I couldn't have asked for better kids! Even with a horrid disease in their lives, they are so amazing!!

Not only are we dealing with new schools and great transitions in that respect, I really believe that we are seeing vast improvements in all three of the girls' health. Miriam (the middle one) still seems to have a lot of emotional issues, but they really only come out at home, and she still is excelling in her classes. They all have pains and random issues that Lymies are so familiar with, but they are becoming fewer and farther between.

I thank God for such amazing kids and for their extraordinary LLND. She is in every way, a hero.

More to come... Oh, so much more... For now, on this, the last few minutes of the first day of fall, peace, love, and cider mugs to you all.

Friday, September 21, 2012

Why Do I Do This?

I have abandoned my blogs. Again. Well, I am here. Again. I will be posting an update about my life AND the kids, probably tomorrow.

But I wanted to let you all know that I'm here. Again. It's been a really hard summer, so please forgive me.

See you all tomorrow.

Feel the love...

I'm late! ( always it seems!)

Wednesday, May 9, 2012

Missing Pieces – Unsolicited Company

Well, well, well... I've had my first official Lyme flake-out. Ha! It's been more than a month since I've posted. I've had this massive block in my head that hasn't allowed me the ability to get *anything* done in any sort of a timely manner. It's been ridiculous to say the least. I've even begun updating and stopped, only to have it NOT save. Ugh. So here we are; ready and willing and ABLE to update. It's a big one.

The first thing I will mention is that my Lyme Life has grown quite wildly in the last month or so. I would say it is kind of looking like our "garden" at this moment... We haven't done anything yet this season. This is where my amazing veggies grow and thrive every summer. Check it out. Yikes. That's alllll weeds.
So, why is this garden being highlighted for this post? Well, this is what I feel my life has been over the last month or so... And here's why: We had our three girls tested about 5 weeks ago. I got the results the day I was driving, in the rain, and high winds, to my own LLND appointment. My oldest is positive for Lyme and has a high strep titer. My youngest is positive for Lyme. My middle daughter, while the tests showed negative, is the most symptomatic, and therefore we believe her body is either (A) just not making antibodies to the bacteria anymore, or (B) there is so much of a bacterial load that all the antibodies are currently stuck to the pathogens and therefore not floating freely around in her blood to give a positive result.

All three girls. I gave it to them all. I did have quite the time for the rest of my drive – and really, the rest of my day – crying, mourning. But I will tell you that there is one thing I do not feel, nor will I ever feel, and that is guilt. If anyone out there is reading this, thinking how horrible it is to know that you passed a disease on to your child, it isn't your fault. Unless you purposely tried to do it. Most people, myself included, don't even know they are sick when they begin their families.

One thing did come out of this fateful day's conversation: I was able to put another piece of my own puzzle together. I was, in fact, infected with Borrelia Burgdorferi  and Bartonella when I was 7. [Actually, as we find out in a later post, I was born with Lyme, Bartonella and Babesia...] (Although, there are a few loose ends to tie up in this respect as well... More to come on that another time.) I do believe I was re-infected and also contracted Babesia 4 years ago, here in my back yard. I pray this is accurate, as I do NOT wish Babesia on my children, or anyone else.

So, another puzzle piece identified and placed. Awesome. Unsolicited company of my own children... Well, not so awesome. However, I did have this word of encouragement for them, and I will pass it to all of you as well:

Everyone in life has a serious struggle with at least one thing; be it a health problem, financial woes, emotional trauma, relational tiffs, etc. At least in this family we are all on the same page and we all know what the others are going through. Sure, it does look a little different in each individual, but guess what? We are all in this together and can sympathize and empathize a lot better than if we all had different crosses to bear.

Everyone keep the faith, fight the good fight, and when you are at the end of your rope, look up and see Who is holding the rope in place. He is the One and only One who can truly, truly save you.

Lots of love,

Tuesday, March 27, 2012

Ondamed and Ranch Dressing... (What is Ondamed, you say?)

I went to an amazing naturopathic conference a few weekends ago in our state's capital. It was, as I said, amazing. Bet you didn't see that one coming...

I learned SO much about the newest info regarding Lyme and had an Ondamed treatment. Wow. Can we say "Hello Bart!"I got up from my treatment and a friend of mine asked what was all over the backs of my arms. See for yourself... Looks a lot like chicken wire. And it wasn't there before the treatment.

Here's a shot of my legs, nearly 12 hours after the treatment.

They truly don't look that crazy in "normal" circumstances.

So something was working, that's for sure! I am looking forward to beginning this Ondamed. It is a bit expensive, though. I couldn't believe what I heard coming from the nurse's mouth. I told her nothing about my situation.

She knew I had Lyme of course, but she began the treatment and began by saying, "You have cardiac issues?" Yes, I have POTS, and the Lyme and Babs have messed up my heart.

Next up: "Your central nervous system is not very good." Nope, I have Autonomic Dysfunction, which is inside the CNS.

Then: "Your endocrine system is taxed." Yes, I'm in Stage 3 Adrenal Fatigue.

Wait for it.... "Are you experiencing any intestinal discomfort?" Nope... She dials in more specifically. "Oh, it looks like you have maybe some gas bubbles more in the stomach area." Seriously? I am lactose intolerant and had ranch dressing at lunch. The Ondamed knew I cheated with dairy!

Last: "Your Lymphatic system is really bad." Yes, yes it is. Every time I do my foot detox baths, so much sludge that is lymphatic in nature comes out. It was unbelievable.

So, to sum up, Ondamed rocks. Bio-feedback is kind of what is happening. The machine communicates with the body and the body communicates back! I know, sounds weird. Almost like quackery... But guess what? It isn't. I am living proof. How she zeroed in on all of my issues was just amazing. I could not believe how accurate it was. I mean, come on. Ranch dressing? Yep. Ranch dressing.

Saturday, March 17, 2012

How We Roll

Today I realized (like I did yesterday, and the day before, and the day before... you get the idea, I am forgetful sometimes...) that I haven't updated in a while. Today's the day!

I thought it would be a good idea to tell (and show) you all why I can't work right now. Today, as I sit on my couch, legs elevated and arms hurting, I realize how truly sick this disease makes me physically. Over the last two days, I have been organizing all of the yarn and craft-type "stuff" that I have accumulated through the years.

It's amazing how much I have inherited from grandparents, found at rummage sales, purchased because I couldn't live without making something with "this awesome chunky yarn" or "that delicious colored yarn in that natural fiber," etc. It adds up. To a lot. It's almost embarrassing to see how much I have while only being in my mid-30s!
Yarn, yarn, yarn... Yes, even in the striped bag.
Anyway, to make this story short(er), I sorted, de-tangled and de-knotted the boxes and boxes of various yarns, so it could go into these great plastic storage drawers that a dear friend had given to me. I also went through 4 boxes of "stuff." You know, the stuff that we placed in the room in the basement when we moved here... more than 4 years ago... The "stuff" that memories are made of...

I almost couldn't get myself up the stairs to bed, because I had been sorting YARN while sitting down all day. It takes both arms and both legs to get me up the stairs; using the hand rail and the opposite wall to help as my legs just won't do it on their own... SO co-dependent with those arms! 

So when I got to the boxes of "stuff," one box was a box of science books. Heavy. So I used my legs to slide it out of the room. And here I sit today, recovering.

I mean, could you imagine me at a job? Where I would have to "do"... anything at all consistently? I'd be fired. So, what do I do to keep myself "alive"? I volunteer for the Wisconsin Lyme Network as Secretary and on the Board of Directors. And this is what it looks like when I have a mid-morning meeting. Notice the three chairs I have lined strategically... Yup.
That's me, listening to my friend who is across the table... And yes, that's decaf and sugar-free coffee!
My meds have this nauseating affect on me. Every day, twice a day, I get like this. For about 1-2 hours at a time. Fun, right? 

Ladies and gents, when you're in the Lyme world, that's just how you roll. 

I know it won't be forever... But until that happens, sporadic moments of organization--as long as it's as light as yarn--and sitting-optional meetings are just what life is.

Thursday, February 23, 2012

Fatigued Adrenals Say What?

Well, I have been to the LLMD, and have returned... No more worse for the wear, physically speaking. However...

If you remember back in my "Officially Official" post, I got to do a saliva test to check my cortisol levels, thus addressing my Adrenal Glands. Lymies tend to have really jacked up Thyroids and/or Adrenals.

Since my Thyroid was in pretty good shape, my Lyme Doc figured I should have the ole Adrenals checked out, and well... W.O.W. is all I can say. Interestingly enough, as I was sitting in the doctor's office, my test results came in over the wires. Talk about your timing! If that wasn't enough, as I was sitting in the exam room, my Lymie friend J texted me, asking about my Adrenal test results. Uncanny!

The fabulous Dr. walked in and we addressed my protocol, herxing, and my overall status. Nothing too major to report, except for the migraine that about took my head clean off my body... Well it felt like it anyway!

We talked about the juicing I have begun to do, and she was elated. It's really one of the best ways to detox, as the green veggies house a tree-load of chlorophyll, which is great for binding to toxins and ushering them through those intestines and out into the pool drop-off area, if you catch my drift. ;-) Did you know that if you get the toxins moving, they end up in the intestines, and if they aren't bound to anything [read: handcuffed to a special agent] they most likely get re-absorbed!!

She also encouraged me to continue the nearly famous foot detox baths, as well as my Epsom Salt and grated Ginger baths, taking Milk Thistle and Dandelion daily, and drinking the freshly-squeezed lemon juice in my daily water.

Lastly, we talked about my Adrenals. Here is what we learned from the infamous spit test. I am in 3rd Stage Adrenal Fatigue. There are 4 stages.

  • Stage 1: "Alarm Reaction"
  • Stage 2: "Resistance Response"
  • Stage 3: "Adrenal Fatigue" or "Adrenal Exhaustion"
  • Stage 4: "Adrenal Failure"
(You can find more information on this at Dr. Lam's website. Very informative. He does split Stage 3 into 4 sub-stages, but this is apparently this is his own interpretation.)

Thanks to Wikipedia for the illustration. This is where the Adrenals are, perched atop the ole Kidneys.

This explains the extreme fatigue, the debilitating fatigue after limb use, and that wicked wicked belly fat I have been unsuccessful to lose – after losing 45 pounds in the last year, even!!

Next up, how do we fix this?

After learning of how serious this was, we talked remedies. There are many ways to naturally support the Adrenals, but in my [naturopathic] doctor's opinion, which I trust, she said we needed to start with Hydrocortisone capsules. And I love how she stated this next part about dosing. Ready?
"Most people we start out at 5 mg, but I think we will start you out at 10." Nice, right?

So I am – on top of my Lyme and Babesia protocols – taking Hydrocortisone every day for three months, and then will re-evaluate at that point. Hopefully soon enough we will be able to move to a natural approach in this matter, but if we started there, it wouldn't take very well. 

All in all, correcting my Adrenals will take a long to time correct. Lyme for the long haul... Now it has a traveling companion. Next stop: Adrenal wellness! ETA: 3-5 years.

Monday, February 13, 2012

Juicy News, Juicy News (part 2)

So I promised a follow-up post today, complete with a list (not exhaustive, but pretty long!) of veggies, fruits, and herbs to juice. But first, let's walk through my dinner plans for tonight.

This is my beautiful Breville Ikon Multi-Speed Juice Fountain. 900 watts of power, baby! (Excuse the crude-ish photos, I wanted to get this out today as promised...
So shiny! Ooh!!! Ahh!!! (Paper towels not included.)
Here is what a typical basket of veggies & fruit look like before they meet the teeth of Mr. Breville.
Yep, a whole head of romaine... NOT that whole piece of ginger, but I cut a piece off from that. And then I decided to throw in half of a lime as well. Apple, cranberry, celery, carrot, romaine, spinach, ginger, lime.
Next up, "Gentlemen, start your engines!" I juice all of this at the appropriate speeds, and then it looks like this:
Kind of pretty, like a mural of wildflowers painted across an Italian field... or something.
And then... Get out the ole cowbell or triangle to call the troops in from the fields... Dinner is served!
A nice tall glass of Shut the H... Oh. Wait. This isn't Happy Gilmore... If you haven't seen that movie, sorry.
A nice glass of green goodness! Tonight's juice is a little sweet, more tart, from the lime and cranberries, and delicious! 
So, below I have compiled a list of the many veggies, fruits, and herbs that I could think of to juice. I'm sure there are more, but this is a great start for those of you who want to give it a go. There are also some tips at the end, to help along the way. I tried a recipe once. It was so stinkin' easy that I pretty quickly gave up looking up recipes and decided to just try out my own combos. You learn how much makes the right amount of juice pretty quickly. But there are a few recipes that are always great to have in stock, because of their properties. I look here for those. Darren and Veronica Haynes are the site authors of "Juicer Recipes Now" and they have some great juicing recipes, like the Alkaline Juice (#3 on the home page), and they have a page dedicate to Veggie Juices as well as Fruit Juices.

This is a snapshot of what my typical go-to juice looks like:

1 small apple (Stems always removed, but everything else is ok.)
1/2 Cucumber
1/2-1 head romaine
2 or 3 big handfulls spinach

Then I add some or one of the following:
1" ginger root
1 or 2 carrots
1/2-1 stick celery
1/4-1/2 bulb fennel (stalks and all)
6-8 strawberries
1 C blueberries
1/2 C cranberries
1-2 leaves bok choy (Strong earthy taste... Not too fond of this one.)
1/4-1/2 lemon (Rind and all. Just cut and throw in.)
1/2 lime (Rind and all, like lemons.)
1/4-1 orange (MUST peel oranges--VERY bitter if not peeled. I cut it off with a chef's knife, peel including the pith [the white part].)

I have to say that I do keep myself limited to two servings of fruit per day, as the sugars in fruits are not as healthy as the rest of the ingredients, and Lymies and sugar don't mix. I also only use apples, citrus and berries. Definitely no grapes! WAY too much sugar. And no bananas... More on that later.

I have yet to try:
Beets (A friend says surely these are STRONG. But I still want to try them!)
Beet Greens
Zucchini (?)
Summer Squash (?)
Cauliflower (Don't think I would juice this.)
Tomatoes (More on this in a minute.)
Pomegranates (More on this in a minute.)
Watermelon with rind
Parsley (Probably pretty strong, so go slow with this one.)
Mint (This would be refreshing with lime!)
Mushrooms (YUCK. Never will try this. Don't think they are juicy anyway, but I hate them, so there you go.)

Interesting tidbits:
Tomatoes and spinach have properties that are very beneficial when cooked. For instance, Lycopene comes out when tomatoes are cooked. When consumed raw, they do not have the Lycopene. I don't know why this is, it just is. And probably more than the Lycopene, like the spinach... Read on.

When spinach is consumed raw, it apparently (can't swear by this, ok? I'm no scientist or nutritionist) can block the absorption of calcium and iodine in our bodies. But when it is cooked, it allows for access to: Fiber, Vitamin K, Vitamin C, Calcium, Magnesium & Manganese, B vitamins--particularly Folate--Vitamin A and on and on it goes.

Who knows... there may be more than this out there, too, as far as veggies and fruits being cooked or raw. But I still juice spinach. It's got a lot of chlorophyll, and this is a great binding agent for detoxing. Which is very important to Lymies, or anyone needing to move toxins out of their bodies. Raw foods also have important enzymes that die when they are cooked.

One to watch out for is celery. I go with about 1/4-1/2 the amount a recipe would call for. Serious celery overpowering! I mean, I like celery, but when juicing, the flavor becomes seriously concentrated! So watch out for that.

Pomegranates are a low-juicing fruit. I've read that it's best to use a food processor on these and add to your juice if you're really bent on having pom in your glass. But I know recipes call for them, so you be the judge.

Kale is not good for juicing, IMHO. I mean, I got juice out of it, but it clogged my machine pretty quickly and I had to de-pulp it before I continued. I never had to do that before. Again, recipes call for it, and many people juice it. But I didn't think it was successful enough for a second round. Also, I've been told that if you juice too much of it, the juice gets quite bitter.

Bananas are a NO-NO. (Yes, not a no-no, but a NO-NO.) They do NOT juice. My friend (no, it wasn't me...) tried juicing one and let's just say she was quite unhappy with the experience. No juice, a clogged machine, and lots of intricate cleaning later, the lesson was learned.

So that's what I've got for you along the lines of juicing. I will keep you all posted on my progress, and will be happy to field any questions you may have about this or anything else I have written about. Happy juicing everyone, and here's to our health!

Sunday, February 12, 2012

Juicy News, Folks!!

Well, peeps, along with the amazing documentary, "Under Our Skin," I am beginning to compile a list of documentaries that I find particularly helpful. The next one, which may remain at #2 for a very long time, is called "Fat, Sick, and Nearly Dead." In this documentary star and maker, Joe Cross, embarks on a 60-day juice fast to help get his body back onto the path of health and into healing mode. Joe had a rare auto-immune disorder that was told to be "incurable." Well, after 60 days and more than 80 pounds dropped, not only was his cholesterol and blood pressure down, but his "incurable" auto-immune disorder had gone "into remission" [read: away!].

I began thinking about how important it is to allow our bodies to heal themselves when they can, and decided that adding juicing to my diet may just be a great key to giving myself an important tool in my healing success. I inundate myself with pills every day. It's part of the protocol to kill this Lyme. I firmly believe (MY thoughts here) that in order to be successful in killing the Lyme and co-infections, a good mix of conventional antibiotics and naturals/herbals are needed. I hate taking pills. And taking a look at the photo below will tell you just what I have to deal with on a weekly basis. Yuck!
Truthfully, not the BEST shot, but you get the idea. I take 30 pills each day.
So, with that brilliant introduction out of the way... Yes, folks, in addition to being amazing, I'm also humble as humble pie. ;-)
I have been juicing for a few weeks now. And I have to say that I have been feeling pretty good. Not like it's curing my Lyme, but feeling more strong and mentally alert is paramount. I have been feeling a bit more energy this past week, which is terrific. I am hoping to really go full-force after a bit, maybe with a juice fast, but not just yet. 

So, to make this easy for referencing and such, I will be posting a second post about juicing and options, including what my typical juice looks like, etc. I just wanted to let you all know that this may be yet another wonderful, starry-eyed, truly amazing wonder-plan to help us through this ugly disease. Please watch for the next entry, which will come tomorrow. 

And tell your friends... (i.e. SHARE IT!!)

So, today's entry has officially ended. But BOL ("be on the lookout," for those of you who have never watched COPS. LOL) for tomorrow's entry, where I will share with you the depth of knowledge I have gleaned from different places on juicing, including a list of things to chuck into the ole juicer!

Tuesday, January 31, 2012

Headaches and Hurdles

I started a new medicine a few days ago. The Doxy (Doxycycline) simply wasn't doing it. At. All.

So, along with the Alinia, I began Azithromycin, or "Azith" to those of us in the Lyme world. I was so happy to switch away from the Doxy, as it really gave me horrid nausea. I leapt from that frying pan a bit hastily...

Yep, FIRE!!! Right into it. The Azith kicked into gear in 24 hours, bringing me a world of hurt. Stabbing abdominal pains... Wasn't sure if I felt like throwing up or saving it for the dark side of the moon... you get my drift? Well, neither vomiting nor the other ailment came about. Just an awful stabbing/pressure-pain all over my abdomen for a few hours each evening. This pain has been completely debilitating. It's not the "Wow, this sucks, but I can manage" type of pain. It's the "Did you hear that? I'm coming to join you, Elizabeth!*" type of pain. I almost felt like I was having a gall bladder attack at some points, and then... oh wait. I don't have one of those anymore. Heh.

Accompanying this lovely sensation is someone I'm pretty well-acquainted with: Mr. Migraine. Things got so bad last night, I couldn't even stand up. I was slumped onto my massage chair (thank God we own one!) for about two hours. You see, my heart medication for POTS doesn't allow me to lay down, as it raises my blood pressure when I go horizontal, for 4 hours after taking it. I tried anyway, and let's just say raising blood pressure during a migraine is the stupidest thing you can do.
My massage chair, AKA the only place for peace in times of migraine herxing.
My most-amazing-hubby-in-the-world actually got in the car and drove to Bed Bath & Beyond to buy me a bathtub pillow so that I could take a detox bath and rest my head. This is how bad my migraine was. Oh how I love him so! (My hubby, not Mr. Migraine.)

So, not only does the new medicine obviously kick my backside from one end of the house and back, it also has given me loads to think about... when hubby and I go to a movie and my legs decide not to work anymore and I literally fall into the next seat over, trying to exit the theater... Yeah. I think, "Wow. I'm glad I didn't sit in the very end seat. I would have fallen into the aisle." And "Well, I wonder how ridiculous we look," as he literally is allowing me to drag myself on his arm on the way to the car. I mean, I look normal enough. When you have Lyme, you don't look sick. I think I must have looked something like Westley from "The Princess Bride" after he'd been "mostly dead" all day.

So, I'm walking a ton better today, two days later. And I'm taking the day off my Azith, and will start back tomorrow at half-dose and stay there for a few days. Then I will ramp up to the full dose. Here's to kicking some keet keester**!

*Please, oh PLEASE tell me you know what this quote is from! If not, look here.

**Keet = Spirochete (SPY-ro-keet); The shape of the Lyme bacteria, Borrelia Burgdorferi.
Keester = Butt.

Tuesday, January 24, 2012

THAT came out of ME?


I have a friend and fellow Lymie that owns a foot detox bath system. You know, I always have a certain level of skepticism when it comes to these things. However, I was surprisingly astonished by what I saw and learned.

If you're not aware, we all have compromised bodies by simply living in an industrialized world. And then, when you add Lyme and other co-infections into the mix, well, let's just say that my body is a veritable cornucopia of less-than-desirable elements. We all are inundated with harsh chemicals – from our foods and even the air we breathe; heavy metals – from vaccinations and other things such as mercury amalgam fillings and more; sludgy lymphatic systems; overly worn-out organ systems; and SO much more.

For me, I also have a ton of bacteria and parasite die-off that not only create more sludge by their deadness hanging around, but these miscreants also release endo-toxins (all of the neuro-toxins they had stored up before they died) into my body at the time of death. It makes me feel extremely sick and altogether just not good. So we Lymies detox, detox, detox the night away.

Our bodies naturally are working overtime trying to clear out all this "stuff" and most times, it simply can't do it all. Enter the foot detoxification system. My friend found this website that sells amazing personal and commercial systems, made in the USA, and is located here in Wisconsin. Check them out, they're terrific. I spoke with the owner, Ryan Pattee, and ordered my own foot detox kit, and am über excited for its arrival and maiden voyage to sludgeville.

Here are shots of the water during and after my initial soak in my friend's machine. Remember that when I started out, the water was CLEAR and had only sea salt mixed in. The rest mostly* came from me.

In the tub. There are many colors that appear, which translate into different systems of your body that are detoxing.

Dark green: Gall Bladder system. I don't have a Gall Bladder anymore, but the system is still there, and is in serious distress.

The floaty, sludgy stuff on top is from my Lymphatic System. Loads of toxins there.

Black flecks? Heavy metals that came out of my pores. Yes. That is correct. There are several in this shot, with two larger ones at about the middle.

More metal flecks. I poured the water out through a paper towel-lined colander, to catch the colors and the heavy metals.

All that orange... That would be from my joints. Some yellow from the kidney/bladder system. I have Interstitial Cystitis, a bladder disorder. I also have Bartonella, which loves to hang out in the bladder.

It can also pull out yeast, which comes out as curdy white floaters, and even red flecks which indicates blood clots breaking up and being pulled out. No kidding. This is amazing.

Let me explain just a tiny bit about how this works. Detoxifying your body can offer benefits such as more energy, rejuvenation, sleep wellness, and healthier skin, according to their website. The following is also taken directly from, as they are the experts, not me:

"The soles of the feet and armpits are two of the body's discharge pathways for toxins (hence the odor). The use of antiperspirant blocks one of these pathways, and over time can result in an accumulation of chemicals in the body. The feet, being the largest pathway of the body, have been used for centuries to eliminate toxins. Traditionally, feet were placed in salty sand, to foot detox. This method, however, was effective but slow, and had limitations.
The foot bath uses a direct micro-current that is very similar to low voltage electro-stimulation or cold laser, both of which have been proven to increase cellular ATP (stored energy). Introducing this increase in energy stimulate the cells to purge toxins at a much higher rate. The warm salt water is used as a conduit for exchanging ions - in other words the foot bath is like a magnet that energizes the cells and draws out toxic material right before your eyes.
Water, metal, and salt will combine to produce a light water color change, as well as objects in the water even without feet being submerged. The ionic foot bath neutralizes toxins in the water the same way it neutralizes toxins in the body. Remember, the body itself has high water content, and this is where toxins become isolated.
*As a general rule, depending on geographical location, about 20-40% of what you see in the water after a foot bath comes from regional toxins in the water, and the remaining 60-80% comes from the client's body while using the detox foot spa."

Hey, if you live close by, I invite you to try this out. This service is also available from certain spas. It is well worth the effort. And I couldn't believe how much better I slept for many nights afterwards.

So that is the skinny on the foot detox. I give this method a super-duper-ultra-mega quadruple A+++++++. Out of 5 stars, this receives the coveted 6 stars. No joke. My doctor also highly recommends doing this regularly.

Who knew detoxing could be not only this effective, but also this gross? I mean, Halloween, here we come as the scum-monsters!

Friday, January 13, 2012

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.

Sunday, January 8, 2012

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..."

Wednesday, January 4, 2012


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.