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.

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!

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.

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.

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.

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!

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.

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.

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.

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!

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?? :)

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!

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!

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!!

Lambing

We went to a farm outside of Chippewa Falls over the weekend and got to visit with some little lambs and chicks! We went with two of Brian's sisters, Jennifer and Annette, and their families. The sounds of the little lambs are adorable, and so was watching them run after their mothers.

The little chicks were cute, too. They huddle together to sleep and keep warm when they weren't running around.

We also went on a "hayride," which didn't actually have any hay, but was pulled by two very large draft horses.

We headed back to Brian's sister's house for pizza, ice cream, and games afterwards. It was a fun day and was great to spend time with family that we don't see as often as we'd like.

And the winner is....Iced Tea!

After trying a multitude of flavors to try to make my aloe vera juice drink enjoyable, I have found the least disturbing. I will be adding iced tea to it from this point forward. Deeeeelish!!

I'm still feeling somewhat better, with only a couple of down days lately. I've tried pushing myself a little bit physically, and that still puts me in out the couple of days following it. I guess I'm not quite there yet, but I'll likely try again soon.

I've been able to keep pretty constant on my epsom salt baths, aloe vera juice, and even a couple protein/calorie drinks each day, but I haven't been great at adding all the supplements yet. My goal is to be near, if not up to, my full dosage of everything by the time my next doctor appointment rolls around in early April. And then hoping my doctor doesn't find out how truly bad I've been at it....I know, it's not hurting him, it's hurting me. I'll get there.

Aloe Vera Juice...Ew.

With feeling better lately, I had decided it was about time to tackle another hurdle. The next thing I wanted to accomplish was to be able to take all 50+ of my pills and supplements without feeling nauseated. A big task, cause I had been feeling nauseated more often than not, and I haven't been good at taking all I'm supposed to be taking...just enough to get by and keep down.

This time my searching turned up Aloe Vera juice. I've been drinking it about twice a day for almost a week now. And surprise!!!! I haven't felt nauseated since I started drinking it. It is, however, one of the weirdest things I have ever had to drink. It's not so much that it tastes gross....just kind of wrong. Kind of like something you shouldn't drink should taste. I've been trying to find the right thing to add to it, but most things seem only to enhance the weirdness of it. Tang powder has been the worst so far...lemonade powder seems to be the best. I've gone from juices to powders because adding juice only gave me more of the weird drink to try to get down.

We've been learning more about Aloe Vera juice over the past week, and Brian has been drinking it some too! It has lots of amazing stuff about it, and can help with several medical conditions and health problems.

Now that I seem to have tackled the nausea problem, it's time to start adding more of the supplements back up to where I'm supposed to be. Once I've done that, I win this battle and I'm on to the next!!

Yes, the Illinois church shooter has Lyme, and so did the face-eating chimp.

Two stories have made it in to the media lately in which the "evil-doer" of the story is mentioned as having Lyme Disease, possibly as an explanation as to why this evil has happened - the most recent being the Illinois church shooting. Some in the Lyme community are hopeful that this will cause the world to take a closer look at the extent of what Lyme Disease can do, and some are frustrated that Lyme is being given as an "excuse" - or even just an explanation - for something that really comes down to responsibility. Then there are those outside the Lyme Community that have other feelings - fear about what Lyme Disease actually might be, confusion because we are taught that Lyme Disease is a simple bacterial infection that's easily treated, and also denial that Lyme could play a part in something like this. Strangely, I'm finding myself both disagreeing and agreeing with almost all of them.

Can Lyme Disease affect the brain?? Yes, absolutely! To the point of making a completely rational person, not prone to violence, actually kill someone? Not too sure about that.

I know that I have a Lyme-infected brain, and it has altered me in some ways. I'm definitely quicker to anger and snap than I have been in the past...but it hasn't changed what I get angry about, or even how I handle my anger. I would say I have definitely acted irrationally at times....expecting Brian to actually quit breathing so I can fall asleep better isn't exactly rational, but even in those moments my sense of right and wrong has never wavered. I still believe I'm firmly in control of my actions...outside of involuntary facial twitching. ;)

And then the part of me that jumps to the other side of the discussion. While it hasn't been my experience, I can't deny that mental illness could result from brain damage caused by Lyme. But then it would be the mental illness that's the contributing factor, not the Lyme Disease. If the mental illness resulted from brain damage due to a car accident, would we be using the car accident as the contributing factor?

Either way, it seems to me the line of responsibility is drawn at mental illness and what was being done to manage it, if that were in fact the issue. One report said the shooter would sometime bark like a dog - if he wasn't fooling around, then I guess it might be an issue to look at. But was it simply the Lyme Disease that made him snap? That's a bit of a stretch to me.

Is it a chance for the Lyme community to get the attention of the public, the media, the government, or whoever they're/we're looking to for help? Uhhhhh.....I don't know. It's not a simple equation - Lyme Disease, even untreated, does not necessarily equal mental illness. Can it? Maybe, I don't know....I know it affects brain activity. I know there are others out there that believe Lyme is responsible for some cases of ADHD, autism, etc. Do I personally like the idea that the connection is being drawn between Lyme and killing people? Absolutely not, and that part of me wants the Lyme part of the story to go away completely. But if it's an opportunity to open the discussion on what Lyme Disease really is, as opposed to what we've been told to believe it is, that would benefit many, many people.

Why can't the story be "Woman Lifts Car Off Crushed Child and Saves Life; Family Says She Has Lyme Disease"....??? :)

The Die-Off and Epsom Salt Baths

On and off since the middle of November, I have been dealing with what is affectionately called "The Die-Off." It's medical term is a Jarisch-Herxheimer reaction (or a "herx" to all the other lymies out there), and it's what happens as the bacteria that causes Lyme Disease is killed.

The Lyme bacteria is different from other bacteria. It's a spiral-looking bacteria that prefers to live deep in your tissues (don't go check your Kleenex box - not that kind of tissue). When the antibiotics get to the bacteria and attack them, they break open and release toxins. This makes me sick...not just frustrated and angry, but physically sick. At times it's made me sick enough to hinder my progress with treatment...it's sometimes difficult to eat, let alone swallow 50 some pills when you're feeling very nauseated.

A little over a week ago, in my search to try to find a way to deal with this issue, I came across Epsom Salt baths. They are said to help draw the toxins out through your pores, a detox bath. I had become very westernized, making me skeptical that sitting in a bath for 30 minutes everyday would make me feel better, but wow!! I've been feeling a lot better, and today after showering I didn't have the uncontrollable need to go lay down for awhile...HUGE difference from how I normally feel. Dare I say, I actually feel a little energized!!

The baths of course aren't only for Lyme Disease. I would suggest to anyone feeling sickly, run-down, or in general pain to get a bag and give a try!

So this is how the story goes...

I'm starting with an apology - this will probably be a lengthy post, but I wanted to get this all out there for anyone interested and also for myself to look back on. I wanted it all in one post as opposed to bits and pieces, resulting in a longer post than I would like. We can all look forward to shorter posts in the future. :)

It was August of 2005 when I found the large circular rash with a small bite in the middle on the back of my leg. Opinions varied as to what it was, some said Lyme Disease while others said just an infected bug bite. Either way, medical care was in order. I went to an urgent care clinic after work where the doctor took one quick look and told me it was absolutely Lyme Disease and put me on an antibiotic immediately. Problem solved, right? Little did we know what was in store.

I followed up with my primary care doctor just six days later. He was also able to look at the rash and informed me that he didn't think it was Lyme Disease and decided to run the blood tests. He also had me stop the antibiotics. The initial test came back positive and I was put back on a weaker antibiotic for 10 days while I waited for the "confirming" tests. But the confirming tests came back negative. My doctor was sure to advise me that if the question ever came up, I never had Lyme Disease. My questions about what the rash resulted in the best answer being "probably just a spider bite or something."

Life went on. We got married just one month later, went on our honeymoon, and started to get settled in to the next phase of our lives. That's when trouble hit.

It was December of that same year that I woke up in the middle of the night with so much pain in my hips and legs that I couldn't lay still. It was a pain I hadn't felt before...kind of like the deepest part of my bones ached. I went to my doctor believing this was the Lyme Disease that I "didn't have." He reran the blood tests, but assured me it wasn't Lyme (of course, because I never had it in the first place). Tests all came back negative for Lyme Disease. In fact, all tests to determine the source of my pain came back perfectly clear, with the exeption of one slightly elevated test, indicating a possible autoimmune disorder.

Over the next couple of months a few new symptoms developed. There was another night that I woke up unable to move my head. My neck was so stiff and the slightest attempt at movement resulted in excruciating pain. Being the middle of the night, we headed to the ER, where no tests were done at all and I was sent home with pain killers and muscle relaxers. Fatigue started to set in so horribly that it took an incredible amount of time to get up and get showered, let alone anything else. In February of 2006, after many fruitless doctor appointments, I was finally referred to a rheumatologist.

The rheumatologist ran many more extensive blood tests and determined that I had fibromyalgia and, because of that one elevated test, was possibly developing lupus. I went through months of physical therapy and pain management appointments. And yet more symptoms started to develop. My hair started to fall out, the pain had spread from mainly my hips and legs to include the rest of my body, I became concerned with my unusually rapid heart beat, among a few others. I described it to people as feeling like I had run a marathon, then got hit by a bus, and then beaten with a baseball bat.

I tried my best to deal with all of these symptoms over the course of the next year. Life basically stopped. There wasn't much that I was able to do. Brian was left with dog walking, dish washing, meal preparation, laundry, cleaning, grocery shopping, etc. in addition to working full time and trying to take care of a sick wife, who according to her doctors, would have this all of her life. It wasn't an easy thing to wrap our minds around. Especially not for a newly married couple who thought their lives were just begininng.

Job changes occurred, and in the summer of 2007 we found ourselves in the Milwaukee area. Symptoms continuted to develop, including chest pain, shortness of breath, horrible headaches on most days, panic attacks (which I had never experienced before), facial tingling and swelling, and sleep paralysis. There were instances of complete memory loss. On one occasion I was hanging clothes in our closet when I turned to grab a hanger and was completely unable to remember what I was doing or what I was supposed to do next. Another time, I walked out of Target into the parking lot and suddenly couldn't remember how I got there, where I was supposed to go, or where I even lived. It would take about 10 to 15 minutes for my mind to bring itself back, but it was still unsettling.

I had given up the rheumatological route and decided to start over with a new set of doctors. The new doctors were no help at all. I had heard things like, "we can only take care of two of your complaints today - which two are the worst?" and "sometimes we start to experience aches and pains, it's just part of the aging process." To them, I was no doubt crazy and a waste of their time. But what choices did I have?

In fall of that year, on one of the many days I was home sick from work, I saw a story on Good Morning America about a woman who had a story so unbelievably similar to mine it was almost spooky to watch. She had chronic Lyme Disease...the result of having Lyme Disease that went untreated or undertreated over time. Up until this point, I had suppressed my thoughts of Lyme Disease and tried to trust that the doctors would eventually find out what was wrong with me. Seeing this story brought it all back and confirmed what I had kept in the back of my mind all along. I had further confirmation when some people who had also seen it called and said "Tiffany, you have Lyme Disease!!!" I finally knew without a doubt what I had, and had to find a way to get medical confirmation of it as well as treatment.

Using the internet, I was able to find a Lyme Disease specialist in Wisconsin. You'd think that would be easy, but it was surprisingly and frustratingly difficult. My first appointment was in May of 2008, and after even more extensive tests and an extremely thorough doctor appointment (for the first time in my life), I got the validation I needed. I had Chronic Lyme Disease. Due to the duration of the infection and the courses of steroids I had been on, the disease had spread both to my brain and my heart. My immune system was almost non-existant. Treatment began right away with a triple antibiotic therapy and many additional natural supplements.

It's been a very complex disease to treat, but I'm happy to say that I have seen progress. I no longer have horrible night sweats or sleep paralysis. The pain throughout my body is usually at a very low and tolerable level. My headaches have gone way down both in severity and frequency - prior to treatment I was getting several migraines a week, now I get mild headaches a couple of times a month, maybe. My panic attacks have stopped...I haven't had one since treatment started. I also haven't had a memory lapse (outside of the norm of forgetting where the keys are, what I came into the room for, etc.) since treatment started.

I'm not in the clear yet, as I still struggle with the fatigue and weakness as well as a couple of other residual symptoms. I'm striving for stability, strength and stamina. I am still on the triple antibiotic therapy, and the list of natural supplements has continued to grow. I'm on about 6 prescriptions and somewhere around 20 supplements, totalling over 50 pills each day. I'm hopeful that's my peak and I look forward to seeing that list start to shrink.

My next appointment comes in early April. Let's hope for more good news!!

While I have the time...

What do people do with so much time on their hands that it almost drives them crazy? The answer is "anything that keeps their minds active and their spirits up." So why not try a blog?

As we continue through this rollercoaster journey of my treatment and recovery of chronic Lyme Disease, this blog will serve multiple purposes for me. It will be a way for anyone to be able to see both how I am doing and what Brian and I are up to, as well as a way for me to look back on my progress and watch how life changes - things my Lymie brain makes difficult for me at times.

We're inviting you to tune in to this journey...we always enjoy the company of family and friends!