Surely to Put a Spring in Your Step!

Well, hello there... How have you all been since February? Hopefully you didn't think I was gone away. I know it's been a while.

Well I have some very good info to pass along! How about that?!?! After 1 1/2 years of treatment, I think we have finally stumbled onto greatness as far as a strategy is concerned. Now, since it's been a while, I will start back at where I left you all.

I've been doing the Glutathione pushes weekly. This continues to be a great help.

After 16 weeks of IV Rocephin, I have switched to IV Invanz. This is a new antibiotic and with that, of course, comes a pretty hefty price tag. I pray my insurance doesn't pull any fast ones on us. The two best things about Invanz is that #1 because it is so new, there is very little resistance to it, and #2, I only have to infuse once a day!!! Hooray!!!

Not much had been happening since I blogged last, so don't feel like you've missed out. Lyme is such a long-term treatment. We are marathon warriors, people. Endurance, endurance, endurance.

There is one thing I can't help but bubble over with pride to you all, though. My eldest of Lyme warrior offspring, Ab, just recently participated in her very first musical. This is something near and dear to my heart, as I have quite a history in the theatrical world. I was so proud to coach her vocally (it's something I do), and hear that she walked away from auditions with the LEAD!!!

Here she is, post-closing night performance, with her flowers and excitement. What a great kid.

That's right, FOUR bouquets of gorgeous flowers!

Even with the struggles of Lyme, she puts herself out there and lives with excellence. Of course, she comes home every night and has mom rub her aching muscles down with some essential oils... but more about that in the next post. ;)

I am so honored to have you all out there, reading along and joining me – in your own ways – in this fight. Please stick with us. We have a ways to go. I hope our story brings inspiration and maybe even a few answers or starting places for your own paths.

Big smiles and happy Spring, everybody!

Say Goodbye to Toxic Things / Gloot-a-what-own?

So it's been quite a few weeks since I've updated again. Here's the lowdown...

First of all, I am thrilled to report that one of us Lam girls is going to be [possibly] [hopefully] [rejoicingly] finishing with treatment in the next 2-3 months! My littlest Lymie will be set free of treatments after this next few months. We are SUPER hopeful for this to happen and are more than excited for her to start living like a "normal" kid again real soon. She is the youngest, so she's been the easiest one to treat. The other two little Lymies will continue treatment along with yours truly, dear old mom. The girls, however, do have a lot less time to treat compared to myself.

So... onto a PICC update! I have successfully had my PICC line in place for 14 weeks today. It has become a part of me in many ways, and life is "normal" with it. Yes, my husband still has to wash me and my hair in the shower... He's a good man. Yes, I still have twice daily infusions... It's boring. But I seem to have found a good relationship with PICCy. My nurse can not believe it's been in so successfully for 14 weeks without problem, except for the stupid adhesive burns I get. Yeah, those are frustrating. Even today, my skin tore when she took the tegaderm off, and boy does the betadine sting when she has to clean the area! WHOOO!!

Even though the meds have been going well and the PICC itself has been good, I have been struggling with my symptoms. And here's why: my LLND ran some new and quite specific tests that were developed by Dr. Ritchie Shoemaker, and we discovered that I have a very high chemical toxicity. It's so bad that it is worse than the Lyme right now. Basically, what this means is that my body isn't detoxing the way it should... Even with the efforts I make. The fresh lemon juice in my water all day long, the Epsom Salt baths, the Milk Thistle, juicing fresh veggies including greens and beets, etc.

So now I am also infusing a compounded substance called Glutathione (pronounced gloot-a-thigh-own), which is basically our bodies' number one antioxidant that it makes. This should be helping to clear my "methylation pathways," or the detoxing pathways, in my body, so that those nasty toxins have a way to escape.

So, that's the latest. Glutathione. If you want to hear someone who sounds awesome say it, check this video out, of an amazing Lyme (and much more) doctor, who happens to be German. This is Dr. Dietrich Klinghardt, who is absolutely amazing. Did I say he was amazing? Yeah. If you want about a 45-minute teaching on the 5 pathways to health, basically, watch all 5 parts of his "Fundamental Teachings" on YouTube. Anyway, he says "glutathione" within the first minute, so it's a quick listen. :)

So there you have it. Pretty great. Love that doctor. He's truly a great in this world. AAAAANYWAY...

So I am pushing glutathione on Saturdays. I have had to miss a few because it's expensive. It's $40 per treatment. Which just adds to the pile of money we have flying out every week... But this one is a pre-pay only, so if we don't have the money, we don't get the treatment. Will be back on track next week with it. Can't wait for that. It does help a whole lot.

Hope you all are doing well out there! Thanks for joining us on our journey. Peace, love, and cider mugs, y'all! Stay warm!!!

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.

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!
Lauren

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,
Lauren

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!

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.