Saturday, October 24, 2009

An October Update

It's been awhile since I last posted, so figured I should add an update!

The Health Update
I had mixed results at my last doctor's appointment in September. My CD-57 test results came back ever-so-slightly worse, my cells dropping from 78 to 72. Still a big improvement from the 23 cells when I started treatment, but also a little step backwards. However, because I've still been feeling a little better my doctor decided to put a hold on my antibiotics indefinitely. So, I'm officially off antibiotics and waiting to see if my immune system has recovered enough to pick up where the antibiotics left off. I'm still on some natural treatments and other supplements, just off all prescriptions. There is a good chance I'll relapse and need to go back on antibiotic treatment, but we're taking the break from it and seeing what happens. It's been a little bit of a rocky transition, some symptoms have been fighting with me a little bit, but I haven't felt enough of a decline yet to call my doctor. My doctor also has put my on B12 injections hoping to combat the fatigue. My first one was hard to use as a gauge...I ended up coming down with a minor case of the flu the same night I got the injection. The rest of the injections are coming to me at home...we (Brian and I) have been "trained" by my doctor how to give them so I don't need to drive up to him (and pay more) everytime it's time to have one. They should be arriving in the next 2 or 3 days, and I'll be having two a week for the first three weeks, then down to one a week. He expects that it will make a major difference for me, and I so hope he's right. Fatigue has been one of my worst symptoms all along.

It was a ridiculously busy summer, and continuing to be a busy fall. With all that we've had going on, it's been amazing that I haven't already relapsed worse than I have. The bad days are still there, though less severe than they have been. I feel like I'm getting a good grip on managing my health, knowing my limits and when to stop pushing myself, and learning various ways to conquer minor setbacks. My immune system is far superior to the void of an immune system I had a year and a half ago. I've caught just a couple of cold/flus in the last year and half and each time very minor and kicked completely within 2 or 3 days...very exciting for me!! I've even been around some sick people and not caught their colds or flus...even more amazing!

Last winter was rough for me, so I am a little nervous going into this winter. I'm only slightly closer to convincing Brian to move to the Southwest. Our state's failing economy and intended direction is helping me build a good case for Texas...I'm thinking San Antonio or El Paso area. :)

The Martial Arts School Update
Lorence Martial Arts Studio is starting to take off! It was a slow start in the middle of summer, with the first beginner's class having only 5 students. As of October, we're up to 14! It's been a huge blessing to be able to supplement our income this way. Brian absolutely loves teaching Tae Kwon Do and doesn't mind doing so after full days and weeks working at Aurora.. Calls and questions have really started to pour in lately, so we're excited to see how things continue over the winter.

Friday, August 14, 2009

Half a New Mouth

I have survived the first of my major dental appointments to get my mercury removed and replaced with non-life-threatening materials. I had several nights of dreams about it before hand, and it fortunately went much smoother than it had in any of my dreams.

Yesterday was the appointment to work on the left side of my mouth, the more severe side. I had 4 amalgam (silver/mercury) fillings removed and 2 were replaced with resin/ceramic fillings, and the other two were replaced by onlays. It was a two and a half hour appointment, so I was offered headphones and music, but I torturously decided I'd rather hear what's going on. I have enough trouble with sounds driving me crazy due to the Lyme infection, so really the sounds of drills and other tools was better than drills, tools, and music.

The mercury was removed without incident in a special room with air purification and a big vacuum near my mouth to pull out the mercury vapors, and a guard was placed over my mouth with only the tooth being worked on exposed. Quite the experience! I will likely go back in the next few days as the nerves in my teeth calm down to get a bite correction. The onlays are still slightly bigger than my teeth were, throwing off my bite a little bit and making eating a little more difficult and uncomfortable, but can be very easily corrected. Then it's back to the dentist in January for round two on the right side of my mouth.

As I've been tapering off my Lyme treatment and Babesia treatment, I haven't been feeling as well. I'm still battling the fatigue more than anything, and minor chills/sweats and some joint pain have returned. I have also gotten off track with making sure I'm drinking a ton of water, so I'm hopeful that's the cause rather than a Lyme relapse. I have been pretty severely dehydrated, as well as having over-worked kidneys and liver with all the metal and medication, and trying SO hard to change habits and drink lots of plain water everyday. If only I had the energy to get up and refill my water bottle. :) It does seem like a vicous cycle sometimes.

Even in my weak moments, I'm still determined to keep things moving closer and closer to being able to return to normal living. It just seems like my pace has been slowed during my transition time. I'm craving physical activity more than ever...even making a mental list of things I want to start doing like rock climbing, taking Brian's tae kwon do classes, pretty much anything physical that doesn't involve running. I still hate running. I'm so looking forward to starting to work on that list, and it seems just barely out of reach. Mercury detox should start to move faster with less mercury poisoning me, and I'm anxious to feel it.

The glimpses of normal life that we've been getting this summer have been a beautiful thing, and something I'll likely never take for granted again!

Wednesday, July 15, 2009

Mmmmm, Mercury!

Another doctor appointment down and another chapter in my life begins!

I received very good news and some moderate news from my doctor today. My metal testing results came back and I do in fact have mercury poisoning. This would be the moderate news. I refuse to call it bad news, because it explains the lingering symptoms and gives me an avenue to attack them. What an amazing blessing it is to have a doctor that recognizes the lingering symptoms I've had that have been barely touched by my Lyme treatment...ringing in my ears, the fatigue, heart issues, vertigo, brain function, etc....and then also pursue the cause and treatment. Back in May when I told him I was still struggling with the vertigo, ears ringing and fatigue (which was strange because of my other symtpoms decreasing so drastically), he immediately suspected heavy metal toxicity of some sort. As suspected, my mercury test in particular came back extremely elevated, giving me a diagnosis of mercury poisoning. I was already put on a chelation therapy in the form of pesto in May, and now with test results, heavy detox begins today! I will also be working with a specialized dentist to have all of my mercury, poison-inducing fillings removed and replaced by non-toxic fillings. It will likely be an expensive mouth upgrade, but an apparently way-past-necessary one.

The better part of this news is that these lingering symptoms are likely not Lyme-related at this point, and my doctor believes I'm very near the end of Lyme treatment. I'm on a plan to decrease my antibiotic over the next two months leading up to my much anticipated CD-57 test. If the test comes back as high as he believes it will, the Lyme treatment stops!! I will remain on about a quarter of my supplements at that point as I continue to build my health and immune system up. This chapter also begins with something else I've been waiting for - physical therapy!!! Yay! Waiting a year for the green light on that one hasn't been easy, but it's finally here. Protein shakes, which I had already been drinking anyway, have officially been prescribed. Look out, here come the muscles!!

I'm so excited to see where these new directions take me. I'm already feeling healthier than I have in more than 3 years, and am looking forward to being my healthiest ever.

Wednesday, July 8, 2009

Long Time, No Post

Wow. Where did the last month go?

It's been a crazy summer so far. Early in June, our niece Kaitlyn came to visit for a week. It was a week packed with activities...zoo trips, a museum visit, a visit to the Domes, among other things. During that very week, with our lease approaching it's end mid-August, we decided to transfer to a different apartment within the same building, a one bedroom instead of a two bedroom. We're using the savings in rent to continue paying down the still-growing medical bills. The one bedroom in our building was available in June, and we made the switch just two weeks ago. Talk about a quick unanticipated move. Fortunately, we had a couple of great friends available on short notice to help with the move and everything went quickly and smoothly.

As busy as we were with those two things alone, we also celebrated the opening of Lorence Martial Arts Studio. Classes started the second week in June and the number of students is continuing to grow. An exciting adventure for both of us, although more so for Brian, as anyone taking Tae Kwon Do lessons from me would be very disappointed. Brian has always been an excellent teacher, and this is a great opportunity for him to combine that love of teaching with his love of martial arts. There's already much interest in his next round of beginner's classes, as well as women's self-defense classes. It'll be exciting to see how it changes and grows over the next several months.

And of course, my health. Overall, signs of progress have never been so great. I have finally begun knocking down the ginormous wall of fatigue. I was able to actually physically help with the move, and even kept up with everyone. Given that the old apartment was downstairs and the new apartment upstairs, carrying just a couple of boxes would have been a huge improvement for me. I was up at 5:00 and able to go strong all day, breaking only for lunch. I did (conveniently) need the following day to recover, and Brian was left with cleaning the old apartment alone. But a surprise phone call from my parents came in that morning, and they were on their way to help with the cleaning. What a blessing!

In all the chaos of the month, I got off track on my meds two separate times. Each time after not being on treatment for a couple days, things slowly started to creep back. And upon getting myself back on track, each time came with a day of more severe illness...fevers, chills, horrible body aches, sleep paralysis, and brain function problems. Medically speaking, the bacteria hides well when the medicine's in my system and come out to play once the meds seem to be gone, resulting in the dreaded die-off each time I start up again. The good news however, was that it only lasted one day each time, which would have been weeks previously. Those little buggers must be greatly shrinking in number. Amazing! Even with bumps in the road, I've been able to continue to build on the progress.

So hopefully now things will start to settle into a new routine. My improved health is making me more functional by the day. Brian is getting used to his new earlier shift at work, and teaching evening classes twice week. And we're remembering that our apartment key works upstairs now, not downstairs.

Friday, May 22, 2009

A Different Kind of Anniversary

Today is the one year anniversary of my official diagnosis and beginning of treatment. On that day I wondered what my life would look like a year from then...and here I am!

There are a few things I expected over the course of the year. While expecting full recovery in a year was a stretch, I did expected that I would feel better in many respects, and I do. It has now been a year since I have had night sweats, panic attacks, chest pain or major memory loss...all things that went away as soon as I started treatment. Other things have have been diminishing over time - the joint and muscle pains, headaches, vision problems, etc. There are a few things I have yet to do battle with, but hopefully the new treatments I'm starting will help with that.

I also expected some difficult days, and sure enough, I had them. Days when I wanted to quit, give up on the treatment, succomb to the devestation of serious illness. Though I've never been suicidal, as many late-stage Lyme patients can be, I did have days where I just wanted to be asleep, simply because then I wouldn't have to be awake. I'm not sure days like these are in the past yet, but they definitely are much, much fewer and further between.

But more importantly are the things I didn't expect.

I didn't expect to learn who my friends are. Leave it to a controversial diagnosis for that! While none of them really have said anything directly to me, there are those who have chosen to fade away, or others who have decided they don't have the time or energy to try to understand. But this also makes the good friends stand out that much more - those that simply care and are able to show it, some that have offered help that we fortunately didn't need to accept, and those that offered other help that we did accept. It's sad when some friendships die, but it's so much greater to know that you have some friends that will stink around when things get ugly, and they'll try to help you through.

I also didn't expect to have such an amazing doctor. I, like many others, had gone through 3 years of doctors that give you a hurried 10 or 15 minutes, will only listen to your "top 2 complaints," try to stifle your questions, don't really give you answers anyway, are satisfied sending you home (even from the emergency room) with 'nothing's wrong' and without any effort to look further, and aren't afraid to load you up with multiple unnatural substances in pill form that could cause further damage to your body, but wouldn't dare think to tell you that you can take oregano oil to get rid of thrush or other yeast problems. After all of that and finding a doctor that actually wants to hear every tiny little complaint you have - which you have time for in a 1 to 2 hour appointment, looks you in the eyes when he tells you that he will help you feel better no matter what or how long it takes, and then actually follows through. After a year I thought he would have gradually slipped down to normal doctor, god-complex, I'm-too-busy-for-you status, but I continually leave each appointment uplifted, supported and encouraged. That's a good doctor.

I didn't expect to learn how great my parents are and how fortunate I am to have them as parents. They've been there from day one and saw how sick I had gotten and were as frustrated as I was without getting any answers. When we lived in Wausau, they were there to run errands when Brian was overwhelmed with things and I was near bed-ridden. Even now being hours away, they still find ways to encourage and support us...and still seem to feel like they're right here going through it with us. That's a trick that I hope is genetic. :)

And although I knew I'd married a good man, I didn't expect him to have to show me how good. No one has been through more during this time than Brian. Seeing the health of his new bride slipping away and not being able to do anything about it wasn't easy. Having to pick up the slack and take on the vast majority of the chores and errands, while still working full time and taking care of a sick wife, would be overwhelming to any one person. He's supported me 100% in our decision for me to stop working while I go through treatment and focus on getting better without the stress of dealing health problems and an employer. And to be able to do all these things and still be there to smile, pray for me, and put aside his own interests and activities just to be there to cheer me up...that's when you know you've married a truly good man.

So, after 4 years of illness and a year of treatment I've come to a point where I'm not sure I'd give it back. If I could do it over again, although it'd be tempting, I'd probably choose not to. I believe God often chooses times of struggle and weakness to bless you the most, if you let Him. I've been blessed in so many ways, I can only begin to include them all here. Although it still might be a struggle most days, I'm excited to see where the next year takes us.

Wednesday, May 20, 2009

Parasites and Toxins

I had a doctor appointment this morning, and things will be changing! Again, minor changes were made to my current routine, and some new things were added. I'm also quite dehydrated and he said I need to get serious about fixing that. I'll basically have to wire a hose to my mouth.

I will also be starting a natural treatment for the suspected Babesia. He said it likely is firing up because I finished up my Tindamax (one of my antibiotics), which would have been helping to treat it. He didn't want to put me back on the Tindamax because of how severe of a drug it is, so I will be taking a special kind of artemisinin instead to treat it.

In addition to the lovely idea of Babesia, he also suspects a potentially high level of heavy metal toxicity! I will be going through heavy metal testing, but he's already starting me on a detoxing treatment involving vitamin C and cilantro. Once the results of the heavy metal testing come back he will better be able to develop a treatment plan for it.

He expects that I will start feeling better again in about 3 weeks, but that if I don't I will need to contact him and get a more aggressive plan in place. He said I should expect the chills, sweats, vertigo, etc., to go away, and my energy level to rise. While these symptoms could be Lyme-related, he did say due to the fact that they had gone away completely and are now coming back, while I'm still on antibiotics, it would more likely mean these other things (babesia, metals, etc.) are going on. We'll try to treat them, get some more answers, and see where we go from here!

Friday, May 15, 2009

Oh, Babesiosis!

It strangely hasn't been a good month for me, which is disheartening because I was doing so well and so hopeful with all the progress I was making.

The last month some symptoms have returned and worsened and suspicions are that Babesia (a known Lyme co-infection) might be the culprit. My previously eliminated chills and sweats have returned, as have my headaches and stiff necks. I'm constantly 'hungry' for air and feel like I'm not able to breath. My vertigo has come back with such a vengence that I have had episodes of dry heaving if I even try to sit up. My appetite is horribly poor...like my body doesn't care if I eat, in fact it would prefer I didn't. Fortunately my brain knows better, but that only makes that battle more vicious.

I'll be going over some blood work with my doctor next Wednesday, and might be getting the answer then. He already suspected Babesia, so it's likely I will be starting treatment for it then. I'm not sure what that will all involve yet if he decides to go ahead with it. Babesia is considered a parasitic infection, as opposed to bacterial, so antibiotics won't treat it. It is treated most effectively with antimalarial medication, but I'm not sure for how long. Maybe now would be a good time to go to Africa!

If you could look through my eyes for a moment, this might actually be very good news! I know that sounds strange. The Babesia isn't as evasive as the Lyme bacteria, so treatment should be more effective. I've also heard from some that it's easier to put Lyme into remission after Babesia is killed off...and that would be a dream come true. The alternative would be Lyme no longer responding to my treatment and that would be pretty devastating.

Bring on the Babesiosis! Wednesday won't get here fast enough.

Wednesday, May 13, 2009

See Fireproof!!

Go get the movie Fireproof and watch it. And when you're done, watch it again or share it with someone.

John Waller - While I'm Waiting (Official Music Video) from Provident Label Group on Vimeo.

Friday, April 24, 2009

Slow Learner

So, I've had this overwhelming desire for the past 6 months or so to get to the point of building my stamina, strength, and endurance back up. Every time I've tried in any form, and against medical advice, I've had to humbly accept defeat and deal with my consequences. Today was no different.

I was feeling good, all joint pain had gone away again, and I decide what better time than now to disobey my doctor and try to push myself. I started small, of course, which is disheartening in itself...2 sets of 3 different arm exercises with 3 pound weights, exercises I used to do with 8 pound weights. I at least had enough sense to stop there.

I felt GREAT afterwards, had the addictive good muscle burn I've been craving. Then 20 minutes later my heart started to race. Aw, shoot. Ten minutes after than my arms started trembling, followed by throbbing leg pains (wait, I did arm exercises...?), and then a trembling jaw that even made my teeth chatter and my lips went numb and started to swell. This is how weird Lyme Disease can be...stupid borrelia burgdorferi.

My heart rate recovered after about a half hour, the leg throbbing has let up a little bit and now feels like a throbbing numbness, and the trembling is now feeling like more of an electric buzz in my arms and jaw. My bottle of water still shakes when I pick it up. I'm sure this was just the proverbial slap on the hand, and tonight or tomorrow, and possibly for the next couple days, will be when I really pay for it.

Oh, well. I'll probably try again in a few days.

Wednesday, April 22, 2009

A Flare-Up

So, it's been awhile since my last post. The day after my appointment my health started to take a dip, and got a little worse each day until late last week. I had quite a bit of pain and stiffness come back, and some of the dreaded fatigue that I jinxed myself by saying was lifting came back, too, with a couple of headaches to remind me just how not done with this I am.

But, I've been on the upswing again for the past few days. Welcome to my roller coaster. A couple days with a lot of napping helped bring the fatigue to a near functional level and also, with the help of a little caffeine and giving in to a couple Excedrin Migraine pills, helped chase away the headaches. But the joint pain and stiffness is still fighting with me a bit.

The flare up is perhaps partly due to the drastic weather changes that are so fun during a Wisconsin spring. We've seen rain, snow, 70's with sun, and more rain all in the last 5 days. I continue to be better at predicting the weather than our local tv stations, also a symptom of several chronic illnesses.

So it could be proven...unless planned, big gaps in blog posts are probably filled with naps, pain, and dizzying weariness. Sad, but true...for now at least.

Here's to hoping for more dead bacteria and more subtle weather changes! Cheers!

Wednesday, April 8, 2009

A Great Appointment

I just got back home from my latest Lyme appointment, and it was great! Not great enough to stop my antibiotics yet, but still relatively great.

My thyroid is now functioning normally - yay!!! Decreases in any medications or supplements is good news for me.

The rest of my bloodwork came back really good. All deficiencies have been conquered, and I'm at optimal levels in most everything. I had one test that came back ever-so-slightly elevated, that the doc said would be indication of infection. He believes it could be Babesia, which is a Lyme co-infection, but will wait until next month's bloodwork to decide if he needs to pursue it. I am already on three antibiotics, so we'll see what comes of that in a few weeks.

Adjustments to my treatment plan are minor - dropping in a few supplements and increasing in a couple others. I even get to drop dosage in two prescriptions...and I'm more than okay with that.

Overall though, I'm feeling better. Fatigue is lifting, symptoms are continuing to fade into oblivion. And he tells me just as importantly as how I'm feeling is how I look, and he said I look great - a lot better than the last time I saw me.

Thanks for your prayers, and keep 'em coming! I'm not out of the woods yet (no pun intended), but after a dreadfully long and ill-feeling winter, things are quickly moving the right direction. It looks (and feels!) like we might have the best summer of our married lives so far. Who wants to celebrate with us?? :)

Friday, April 3, 2009

A Must-See Film

There is a documentary being released in theaters in June called Under Our Skin. It's about the reality of Lyme Disease and is going to shock lots of people when they find out the information that's been greatly withheld from the public. I strongly encourage EVERYONE to see it, at least on DVD after it's released in that form. Here's a glimpse...




Lyme Disease is extremely misdiagnosed and very often under treated. Aside from getting this information on the disease out, I've heard that the documentary is captivating and beautifully done. Please see it for one reason or another. And if all else fails, see it for me!

Friday, March 27, 2009

Health Update

I just got over a cold that I've had since Tuesday, and it struck me today - I've only had the cold since Tuesday! Not only did I recover from a cold in less than 4 days, it was also much, MUCH less severe. Hello, new immune system!!!

It's getting harder for me to track my progress...it was easier in the beginning as things I'd been dealing with were starting to disappear. With a few weeks of epsom salt baths, and a couple weeks of aloe vera juice added to my routine, here's where things are at:
  • My joint and muscle pain continues to only show up when I push myself too far, and then takes a day or two to go away again.
  • My migraines are almost a distant memory. I can't remember the last time I had one, and I've only had a handful of minor headaches over the winter.
  • The fatigue and exhaustion issues have improved yet a little more. I was even able to vacuum and shampoo about a third of our bedroom carpet yesterday before needing to take a break. May sound small, but big for me! By the end of the day, I had recovered enough energy to bake cookies, so I'd say recovery time is improving, too!
  • Vertigo is a beast, but it's not as bad as it has been. I still get very woozy when watching some movement on screens and in the car, and only once in awhile after standing or sitting in one position for awhile. Going to the IMAX in February was not a good idea.
  • Nausea hasn't returned since starting to drink aloe vera juice...which I think I've been doing a little over 2 weeks or so.
  • Chills and sweats haven't returned since starting the epsom salt baths about a month ago. Yippee!! Night sweats came back for a visit for a couple nights about a week ago, but have since left again. They overstayed their welcome, and they're not welcome back.
  • The annoying tingly, prickly sensation on the left side of my head and down through my chin and lips is fighting with me. Most days it's gone, which is a definite improvement from feeling it all the time, but it still reminds me it's around every once in awhile.
  • Chest pain and shortness of breath are very much improved. I still am out of breath after doing almost anything, but it's not the scary short-of-breath feeling I used to get. And the chest pain is minor when I feel it.

I'm seeing improvement, and so looking forward to being able to start working on building up my strength and endurance. I'm hoping to reach that point this summer. To all the doctors who think my treatment is dangerous and in-effective - neener, neener, neeeeeeener!! I'm getting better!

Thursday, March 26, 2009

Grandma's Molasses Crinkles

After a few months of thinking about it, and finally picking up a little jug of molasses, I made my first attempt at some Molasses Crinkles in memory of my grandma! Grandma Nelson always had these on hand, whether she knew someone was stopping by or not.



Much to my surprise, I think they actually turned out great! The true test will be finding out what Brian thinks when he gets home. If anyone knows a good cookie, it's him!!