Total Extinction

It's time for me to begin weaning myself off of my three times a week Bicillin injections for treatment of my chronic Lyme disease. Now, you would think that this would be the kind of change I'd be jumping for joy at. I mean, seriously, who wouldn't want to ditch several-minutes-long, pain-in-the-butt (literally and figuratively!) shots three times a week?! Me, apparently! Change means facing the unknown, and for me the unknown means changing a treatment that is working really, really well.

Monday was my 72nd shot--the six month marker for me. I had been working toward that goal, well, for six months, obviously. My friend and I joked that I would reach "total extinction" (remission) at the six month point. While I wasn't magically healed by the 72nd shot, I cannot deny that these shots have brought me farther than any other treatment I've done.

Alas, I am not in remission, and that means--like it or not--it is time for me to soldier on with the next part of my treatment. Last night was my first (planned) night skipping a shot and I was terrified of how my body would respond to this change. I worried myself into a panic yesterday.

Sometimes, you have to learn a lesson over and over before it sinks in: When you dwell on fear, it grows and grows. I realized last night that I was unconsciously choosing to make the fear of the unknown a thousand times worse than facing the actual experience, and that was the last thing I wanted to do.

I decided today I needed a change in attitude, and I must say, when you go looking for motivation instead of dwelling on fear, motivation has a way of making you look like quite the fool! I took myself out to lunch alone today--a very rare occasion for me, since I'm the mother of two young kids--and I noticed that the man sitting at the table next to me was sporting a neck brace, an eye patch and a cast on his arm.

Poor guy, I thought to myself. But then I realized that I was the miserable one feeling sorry for myself, despite the fact that I was still feeling pretty decent considering the skipped shot. This man was smiling, laughing and having a wonderful lunch with a friend. If I didn't think it would break him, I probably would have gotten up and hugged him!
 
Well, what can I say? I learn my lessons the hard way! Don't most of us, though? Anyway, enough feeling sorry for myself; enough moping about having to be sick for a while again (So we meet again, Flagyl!). Enough! It's time to move forward.

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” Helen Keller

March On

I haven't been writing much because I've been feeling really well. Today I had an appointment with my Lyme doctor and I was so excited for this appointment because I couldn't wait to share my joy with her in letting her know how well I've been doing.

Currently, we have been treating my Lyme disease with Bicillin intramuscular injections three times a week. I am a few shots shy of six months. My new treatment plan is to cut the shots back to one a week, and on shot days and the following day, I will take an oral antibiotic--a cyst buster known as Flagyl.

When the Lyme spirochetes are attacked with antibiotics,one of the ways they will try to evade this attack is by turning into a cyst form. They either come out of this cyst form when they think the coast is clear, or they are forced out by cyst busting antibiotics. Cyst busting drugs are essential for Lyme disease treatment, but brutal, because they are notorious for causing very strong Herx reactions. Flagyl is definitely on the list of least favorite antibiotics among Lyme disease sufferers.

Some people may be wondering why I should continue with the shots if I'm doing so well. The reason for this is because after my shots, I have been experiencing a strong Herx reaction. I get incredibly exhausted and have very severe flu-like aches for a few hours. While it's unpleasant, this Herx reaction means that the shots are still working.

Starting a new treatment regimen is always daunting. I've gotten used to being back in the saddle again, literally and figuratively, and it's hard to think about trading that in for feeling lousy again for a while. Remember, with Lyme treatment, you have to get worse before you get better. If you don't, it means the Lyme bacteria is not dying off.

My doctor mentioned that cutting back my shots could cause me to relapse, in which case I am to go back to three shots a week (without the Flagyl). It's hard to change what is working so well, but I'm not all the way out of the woods yet, and so I bravely march on to the next part of my treatment!

Doing a three mile hike on St. Paddy's Day!

Feeling Good

I am now officially one month sugar free! Valentine's Day was brutal, and sadly now that V-day is over, going into the grocery store is not any easier due to the fact that all of the chocolate morphed straight from heart-shaped delights to smiling Easter-bunny-shaped temptations. Mmmm...chocolate! Time to change the subject, pronto!

I've been slacking pretty badly at keeping up with my blog lately, but for once, it's for a good reason: I've been doing significantly better! My energy level has gone way up and my pain levels have gone way down. My memory is slightly better--I've been starting to remember major and minor details--things that matter so much to me--without having to draw pictures on my hand!

Muddy Buddies! Fjóla and me on a muddy day.

For the first time in over ten years, I've been able to get off of my asthma medicine. I've been off for a few months now and have not had a single asthma attack. Most people--including doctors--do not connect asthma with Lyme disease, but I developed asthma (along with several other health problems) shortly after my health went rapidly and "mysteriously" downhill following a tick bite in 2001. Lyme disease can wreak havoc on any and all systems in the body!

One of the most exciting changes in my health that I've started noticing quite recently--which now that I've put that into writing, I've realized probably isn't exciting to anyone but me--is that I have started getting hot at the appropriate times. That might seem like a strange thing to be excited about, but the daily Lyme chills that I've suffered from for years make it impossible under any circumstances to get warm, even in the summertime. I've been known on many occasions to zip myself into a 0-degree Mummy Sleeping Bag, plus multiple comforters, not to mention coat, hat, mittens, etc. in the middle of a heat wave and still be chilled to the bone!

I remember someone telling me that one of the first things the Lyme bacteria does is attack your thyroid so you can't regulate your body temperature. The bacteria thrive in the cold and so most people with Lyme disease have low body temperatures. Normal for me is around 96.2! For me to feel hot at appropriate times again makes me think that my body is starting to win back control again!

While I am doing much better, I still have many Lyme symptoms left. Though my joint pain has been relatively mild lately, I still suffer from daily flu-like body aches, at times very severe. I tend to run completely out of energy quite abruptly, so I have to pace myself very carefully if I'm not at home, and sometimes I will use a wheelchair still for that reason.

My current Lyme disease treatment consists of Bicillin intramuscular injections three times weekly (read: shots to the butt on Mondays, Wednesdays and Fridays). My doctor wanted me to do six to eight months of Bicillin and I am currently only 19 shots away from my own personal limit of six months of this pain-in-the-butt-treatment!

I am currently researching rife machine treatments for Lyme disease and have been reading Lyme Disease and Rife Machines by Bryan Rosner. I can't say enough good things about the book so far and I really think this is the route I want to pursue. I am getting tired now and will have to save explaining what rife machines are to those who've never heard of them for another post. Which reminds me of one last thing--I've been getting tired at a normal hour again for the first time in a few years. I think my body is really starting to win this battle!

I would love feedback from any Lyme friends who have had experience with rifing!

Oops, I Forgot

Last night, I forgot to take my shot out of the fridge. I'm supposed to take it out an hour before it's time for my injections and--despite the not-so-great track record in the ol' memory department--amazingly, this was the first time I've forgotten. Hey, one out of 18 isn't bad!

The problem was that my friend who gives me the shots had just been picked straight up from a 10 hour shift at work, and even though he was being a good sport, no one had to tell me that waiting an hour for a shot to warm up wasn't exactly high on his list of fun ways to spend the evening (not that giving a shot is good fun, either!).

So, we took the shot out and stuck it under the lamp. We tried to speed up time, but that only works on tv. After about 20 minutes, it felt room-temperature-ish, so we decided that was good enough.

Time does strange things when you have to sit still with a giant needle in your butt. I normally don't pay attention to the clock, because no matter how I think about it, there's still a shot in my ass for several minutes! Normally it takes about six to eight minutes because the medicine is very, very thick. However, this time, I noticed that we were almost through an entire episode of The Wonder Years on Netflix. Shit! 

My friend seemed a bit worried and asked me if I was relaxed. Sure, I was as relaxed as could be given the situation, but, truth be told, I wasn't sure what was going to happen to Kevin and Winnie. I mean, after all, he caught her kissing the lifeguard! Oh, yeah--you're talking about the shot that won't end...

Why do you ask, pal? Is my butt turning green and purple? Are rabbits jumping out of my ass? Should I be concerned? Am I dying?! Yes, I must be dying! Oh, NO!

Okay, so you probably figured out that I didn't die. Actually, nothing bad happened at all except for the fact that the medicine apparently had a cold spot and it took 20 minutes to get all of the medicine to come out. When it did finally start coming out, most of it came out in one big blob. It really didn't hurt any more or less than any of the other shots, but I figure it can't be a good thing to have a needle in your butt for so long!

In what was likely no coincidence, I spent most of today Herxing to the moon and back. I laid in bed chanting, "I will never forget to take my shot out of the fridge again; I will never forget to take my shot out of the fridge again; I will never...."

Lesson learned. The hard way.

Does Debbie Downer Try To Write Your Blog?

Often, I struggle to find the right words for what I want to say without coming across as writing the most depressing tangle of words imaginable. Lyme disease is not an easy topic to write about without bringing the room down! But, since my biggest hope for my blog is to help others understand what it is like living with chronic Lyme disease, I know I can never achieve that by writing from the perspective of a Debbie Downer, so I try not to let her write my blog posts!

Writing about a difficult subject like Lyme disease is no easy feat. Think of it as being a master chef. For those really tough blog posts that you just can't seem to publish, here's my recipe for success: toss in a gallon of hope, two teaspoons of pain, four heaping cups of gratitude, a sprinkle of tears and two or more cups of laughter to sweeten things up. Add in a few dozen "followers" and cook at 350 degrees until golden brown or until people start "liking" your blog posts.

If you add in too much "pain" and not enough "hope" or "gratitude," your blog post might come out a little too dry and/or burn around the edges. Don't give up; next time just add in a little extra laughter to sweeten it up. Now, let's get cooking and see if this "recipe" works!

(HOPE) On 11-11-11, interestingly enough, I had Bicillin shot number 11, which I took as a sign of good luck! I also began an herbal treatment called the Cowden Support Program for my Lyme disease. Today I am on day three of the six month Cowden Protocol. (LAUGHTER) Three days down, only 187 more to go!

(PAIN) My horse had to have her feet trimmed yesterday and I literally felt like the walking dead. It took every ounce of strength in my body to get to and through that appointment. I was so sick, I didn't even have the energy to hug my beloved horse--who was so excited to see me. In my world, there is no such thing as too exhausted to hug a horse. (HOPE) Yesterday was a tough day, but I know without a doubt that I will beat Lyme disease and one day I will tolt off triumphantly into the sunset with my little pony!

(GRATITUDE) After I got back from the barn, I had a two hour massage (Lyme disease does have a few perks!), which was completely heavenly. It helped pull me out of my funk for a few hours and gave my mind and body temporary shelter from the storm.

(PAIN) I'm pretty sure it's the Bicillin that's kicking my butt. The last few shots have made me feel progressively worse and my Herxing symptoms are piling up. The first three days of the Cowden Protocol are pretty gentle and are intended to help your body detox. Tomorrow--day four of the new protocol--I start five new herbs and also have to have shot number 12 in the evening (LAUGHTER)(er, in the butt, if you'd like to be more technical).

(LAUGHTER) Things are probably going to be pretty intense tomorrow and I told my friend that I am going to wear my Badass Lyme Warrior Woman outfit, complete with convenient Bicillin butt flaps!

Pot of Gold

I've had two Bicillin injections now. Number three is due tomorrow.  The thoughts are racing through my mind: Will this be the treatment I've been waiting for? Will this finally bring me into remission? Will this be the pot of gold at the end of the rainbow?

Sometimes, I feel like a fish swimming against the impossible current of chronic Lyme disease. Will I get my life back? Will I get better? Will I have to keep swimming forever? Will Bicillin be my miracle?

Mark My Words

I survived my first Bicillin injection on Wednesday! The needle amazingly didn't hurt a bit and it was over in a heartbeat. The site became sore several hours later; not right away like I expected. I figured that I would start Herxing right away, but I actually didn't get really sick until around 10 hours later. I was VERY sick for a few hours--complete with uncontrollable, violent muscle jerking--and I wanted to throw in the towel, but I had a friend with me who helped me through the pain.

Tonight is my second shot. My derriere is pretty sore, and it's going to be very painful when I have to have another shot on that side (we alternate sides every time). I will be getting injections on Mondays, Wednesdays and Fridays from now until question mark. My plan for this weekend is to hole up in my bed and watch a marathon of The Wonder Years on Netflix.

I am so proud of my body for how hard it is fighting this battle. Lyme disease treatment is incredibly difficult, both physically and mentally. But, I am stubborn and strong-willed and I will never, ever give up. Mark my words, I WILL OVERCOME THIS!

"Although the world is full of suffering, it is full also of the overcoming of it." Helen Keller

Toxic

This week, I started a new treatment for my Lyme disease and it's causing an incredibly strong Herxheimer reaction (or Herx, for short). My pain level is extremely high, which is weirdly a good thing in Lyme treatment, because it means the Lyme bacteria is dying.

Understanding a Herx reaction is essential to understanding Lyme disease. It is the key to knowing that the diagnosis is correct. As the Lyme bacteria dies, it releases toxins into your body faster than the body can get rid of the toxins--which causes a major increase in all of your Lyme symptoms (joint pain, muscle pain, headaches, etc.)

As a Lyme patient undergoes treatment and endures a Herx--sometimes called a healing crisis--they need a lot of extra support. It has been compared to chemotherapy because the body is literally being poisoned in order to heal. Herxing can be unbearably painful and can last anywhere from a short amount of time to several weeks.

Unlike chemotherapy, where everyone rallies around a cancer patient and gives them the compassion, support and encouragement they need to get through their incredibly difficult treatments, Lyme patients are often left with little or no support, understanding or compassion. Instead of encouragement, Lyme patients are often met with hostility (especially in the medical field), negativity and disbelief. Even when we are in excruciating pain, we often don't look sick--which, sadly, makes it hard for many people to have compassion.

I have heard a lot--and I mean a lot--of negative things since I received my diagnosis of late-stage Lyme disease. Because Lyme disease is so poorly understood (both in the medical field and among the general public), most people do not--cannot--understand the devastation, the pain, of this disease in its chronic form unless experienced first hand.

I think often of the person who, slightly over a year ago, spewed hateful and thoughtless words to me about my treatment, my children and my doctor. Her poisonous words haunt me to this day, following me around and threatening to make me second guess myself. She hurt me deeply, but I chose to use the pain she caused me for something good--I started this blog to educate others about Lyme disease.

I chose to make my journey public so that others could understand this controversial, politically-charged Lyme disease hell that I, and countless others, are stuck in. Sometimes, though, I feel like people are watching me, waiting for something bad to happen so they can say, "Ha! See, I told you you were on too many medicines!"

Lyme patients get very weary of defending their doctors and treatment plans, and I am no different. Just like a cancer patient finds the best doctor who specializes in treating their cancer, I have researched the best doctor specializing in my disease. My doctor keeps up with the latest research on Lyme disease and the best available treatment options. I have chosen her very carefully and I am in the best of hands. How many of you can say that you truly love your doctor? I can; my doctor saved my life and I am forever grateful for her.

Before I started treatment, I lost the ability to care for myself and my children and I could not cope with the amount of pain I was in. A year and a couple of months after being in treatment, I have made worlds of progress. I can participate in life again and my pain is so much more bearable than it was before I started treatment.

However, my doctor doesn't feel that I am making good enough progress in my treatment for the amount of time I have been on antibiotics. The longest I've been off of antibiotics is two weeks, and the two times that that happened were very difficult and painful. My doctor and I have collectively decided to step up my treatment with intramuscular Bicillin injections--shots to the butt--three times a week, because they cross the blood brain barrier (or BBB).

Crossing the BBB is essential in the case of chronic Lyme disease. Any time Lyme disease has gone untreated for over a year, the Lyme bacteria will have had a chance to disseminate throughout the entire body. Lyme bacteria love to hide deep in tissues; they can and will bore into and attack any organ in the body--the brain included. Oral antibiotics are not able to cross the BBB, so when you attack the Lyme bacteria with oral antibiotics, the Lyme bacteria will run for safety--the brain.

I started oral penicillin this week, and next week I transition to the Bicillin injections. The injections are extremely painful and last several minutes. Any treatment that crosses the BBB causes a major Herx. This treatment is going to be very difficult and I'm going to get much worse before I get better. I'm scared, naturally, but I'm also very hopeful that this treatment will help me go into remission.

Thank you all for all of your love and support. I try my best to focus on the positive and not the negative, but sometimes that's easier said than done. It's hard being stuck in the middle of a controversial disease.

“Do what you can, with what you have, where you are.” Theodore Roosevelt