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!