5 Days In...

For those of you that might be wondering about it, when I went to see the doctor and was diagnosed with late stage Lyme, she told me, "You've got a really long road ahead of you." Hence, the name of my blog. :)

Today is my fifth day of treatment, and I'm doing ok. I'm taking about 30 different things, at eight different times throughout the day. Surprisingly enough, I'm getting used to it, and it hasn't been as bad as I'd anticipated.

I've also been officially off sugar, dairy and gluten (which includes wheat, oats & barley)  for almost a full week. I'm amazed about this, because I'll be honest, when I first found out that I had to eliminate these things completely, I was really discouraged. I think it would be difficult for most people to eliminate one of the three completely from their daily diets...with all three it's like, what do I eat?? With the help of some resourceful friends, and a thorough search of WalMart and Costco, I've come up with some good options for now. Obviously I can have all the fruits and veggies I want. And the other stuff will become more familiar and easier with time.

I have noticed significant improvement in the swelling in my hands, and my joint pain has improved substantially, it's still there, but I don't have to hobble around the house right now. I've also got a lot more energy. I feel alert and awake, which is unusual for me in the past few months. The last two days I've been able to wake up without an alarm clock at 7am. That hasn't happened in several years!

Anyway, I'm not sure if these things have to do with the diet, supplements & medications I've begun, or if it's just part of the natural cycles that have been happening all along. For the last several months I've noticed that I will have 2 or 3 "good" days -- days where I have more energy and less pain than others -- and then I will have 4 or 5 "bad" days -- these are the days where it's hard to get out of bed. It doesn't really matter...I've enjoyed having the energy and the slight reprieve from the pain. Whoohoo!

I scheduled my next appointment yesterday also. I'll see the doctor again on Monday, March 2nd. That's when I'll start antibiotic therapy. I'm not really looking forward to that, since I haven't heard fun things about it. But at the same time I'm told the antibiotics are what really help, and after you've made it through the first few months, you feel significantly better.

What is Lyme Disease?

I think most people have heard OF Lyme Disease, and yet most of us have no idea ABOUT Lyme: what it is, what the symptoms are, and the chaos it can create in the body. I have spent the last six weeks reading everything I can about Lyme, and I'd like to share some of the most interesting things that I've found.

Lyme Disease or LD is primarily an infection caused by a bacteria, Borrelia burgdorferi or Bb. The bacteria is a spirochete (pronounced spy-row-keet) meaning it is spiral or corkscrew shaped. These nasty little critters are pictured below. 

 

Because the bacteria is shaped like a corkscrew, it is able to literally drill through tissue. This allows the infection to spread to almost every part of the body, infecting multiple organs and causing a wide range of symptoms. 

The most well-known symptom of Lyme is the characteristic "bulls eye" rash that may develop soon after a person is bitten. While the rash is well-known, not developing a rash is not a clear indication that you're not infected. Interestingly, research now shows that less than 50% of people who tested positive for LD ever recall developing a rash or even being bitten by a tick. 

Other symptoms of early Lyme include fever, fatigue, headache, and depression. Left untreated, late symptoms can involve the joints, heart, and central nervous system. Most of the literature I have read puts an emphasis on the commonality of ongoing, profound fatigue, foggy thinking and pain in the joints and muscles that is persistent over years of time. Because of the severity of the symptoms in late stage Lyme, many patients are often misdiagnosed as having MS, ALS, Parkinson's or Alzheimers.

The Treatment Plan

I started treatment on Monday, January 26th, with 30 different pills taken at eight different times throughout the day. Needless to say, I'm feeling a little overwhelmed. In addition to all the pills, I will have to eat gluten, sugar and dairy free in an effort to increase the efficacy of the treatments, help boost my body's own ability to heal itself, and minimize negative side effects of the medications I'll be taking. I'm supposed to do 2-3 days of light weight training each week. In the past, this has been simple and something I have enjoyed doing...however feeling the way I do now, it seems like a tall order. 

I will start antibiotic therapy when I go back to see the doctor in another 4 weeks.  I will be doing combination therapy of four different kinds of antibiotics, administered daily both orally or IV, they have to see what I need specifically. They won't know that until all my blood tests are done. The therapy can last for several months or longer, depending on how I respond. I will be on treatments, (antibiotics, medications and supplements) for 3 to 5 years in all likelihood.

The treatments are going to make me really sick (supposedly I'll feel like I want to die...that's funny, I thought I was already really sick...haha) for the first few months, but then I will start feeling better and should start to see improvement in energy and some of the other symptoms that I've been having. The doctors that are doing this have had great success with it and the treatment is about 90% successful with most symptoms resolving, so I feel like I'm doing the right thing for me. 

Getting a Diagnosis

On my friend's recommendation and my own research over a month's time, I decided to travel to Seattle to visit a doctor that specializes in Lyme and other related infections. After speaking to the doctor several times on the phone, I made the appointment and booked a plane ticket. I continued researching as much as I could about Lyme Disease, trying to sift through all the information and misinformation that's out there. 

Last week, I flew to Seattle to meet with the doctor. For two hours we went over my medical history in great detail. We also went over where I had lived, my outdoor activities, where I have traveled and other risk factors that might help determine my likelihood of having contracted Lyme. She also tested my reflexes and motor skills in addition to a traditional physical exam. The doctor said that based on all of the clinical data (things the doctor can observe), I was a classic case of what they call "Late Lyme" because they think I have had it for at least 10-15 years in order for it to be advanced enough to be causing so many symptoms that affect so many different body systems. In order to determine exactly where I'm at and how to proceed, they took 24 vials of blood to test all sorts of things from immune markers to the possibility of other infections or complications.

I was pretty shocked at first, but in reality I'm glad to know what's going on and I'm anxious to try to start addressing it. The treatment plan I've decided to follow is controversial, but I've done a lot of research and I feel it's the right thing for me. 

A Little Background on Me

If you've known me for a long time, you know that I've pretty much had medical problems since literally the day I was born. The last ten to fifteen years in particular have been difficult with lots of strange and crazy things happening with my body. Since 1995, I have had 9 surgeries, most of them unrelated and for the most part not serious. I've just always felt that Heavenly Father thinks I learn important things through being sick. It's been the story of my life. In 1995 I had a kidney removed, and since then it's seemed like my immune system just hasn't wanted to work right. I know that they're not directly related, but it's been since about then that I've had all kinds of strange things going on, and it seems like I've been constantly sick with colds, flus and other bugs. 

Over the last four to five years, however, I've been to multiple different doctors for a whole laundry list of symptoms. I've had recurring bouts (usually lasting about 6-8 weeks) with arthritis, fevers, chills, night sweats, muscle aches, extreme fatigue, nausea, vertigo, headaches, sore throats and other strange symptoms. I also have hardly any immune system to speak of, and I seem to get anything that's going around. 

In addition to all the different doctors, I've been in to the ER for severe abdominal pain several times a year for the past four years as well. The doctors always run lots of tests. Blood panels, ultra sounds, MRI's and CT scans. I've been tested for everything imaginable, and even sent up to the Huntsman Cancer Hospital to have my liver scanned using advanced equipment...that was a little scary. After all the tests, it always ends up with them sending me home with the same thing: a prescription of pain meds and no diagnosis. 

During this whole process, one of the most frustrating things for me has been the unwillingness of the doctors to look at my entire health history to try to figure out what is going on. I've been having most of these symptoms on a recurring basis for years, with each recurrence getting a little worse, and with new symptoms appearing. To me, it all seemed somehow related, and yet none of the doctors I saw, (NONE OF THEM), were interested in discussing what happened six months ago, let alone six years ago. 

Over the last four months in particular, my symptoms have seemed to be escalating.  In late September of last year I noticed that my arthritis was getting worse and the fatigue was coming back. By mid-October I was having severe abdominal pain again and was nauseated constantly to the point of being unable to keep food down. Since then I've been to six specialists, the whole time making no progress towards an explanation, while continuing to get worse and worse. I've gotten to the point where 3-4 days a week I am in bed the entire day because I literally don't have the strength to get up, and I am in constant pain. I have also started having fevers again, usually in the evening, usually 2-3 times a week.

In mid December, I was quickly getting to the end of my rope. After having seen all the different specialists, an additional round of tests including exploratory abdominal surgery and a complete GI work-up (this included a colonoscopy and endoscopy...yeah, that was fun) the doctors were still baffled. As my symptoms (all of them) continued to get worse, the doctors recommended regular lidocane shots in my abdomen to deaden the nerves that they thought were causing the pain. What....? What about my other symptoms? 

During all of this, a friend of mine that I literally hadn't talked to in at least 10 years contacted me on Facebook and asked about what was going on, since she had seen so many people commenting on my health. After a brief conversation about things, she suggested I look into Lyme disease as a possibility, and consider being tested for it. I'll admit that my first reaction was to brush the idea off. Everyone has opinions and suggestions, especially in a situation like this. I had heard of Lyme, but had no idea what it was or what it did.

However far-off I thought the suggestion was, I agreed to read some links to articles that she emailed me. As I read through the first article, I couldn't believe what I was reading. It seemed as though the article could have been written about ME. All the symptoms I was having, everything I had been tested for, all the things I've been "diagnosed" with over the last ten years were in that article. I continued to read the other information and felt even more strongly that in the very least I did need to be tested for Lyme. 

Where to Begin....?

Many of you know I have been having some issues with my health for quite awhile. After a lengthy process, I have finally been diagnosed with Lyme Disease. I have debated whether to tell people about what's going on or keep it to myself, as it looks like it's going to take awhile to resolve all of this. I guess everyone will find out eventually anyway, so I decided to start a blog that will help keep my close friends and family up on what I'm doing and where I'm at in the process. 

I'm also going to try to include as much information as possible, in the hopes that it will help people understand a little bit more about this relatively unknown disease, and the reasons I have chosen the treatment options that I'll be starting on. 

Since this has been the main focus of my time and attention over the last month and a half, this will also be a good way for me to sift through a lot of the information and hopefully sort things out. Hopefully, we can learn together...