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!

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

Hell on Earth

In March of this year, my doctor decided it was time to pull out the big guns and instructed me to take a very high dose of a medicine to treat my Lyme disease co-infection Babesia. She apologized profusely and warned me that such a high dose was going to be bad. That was the understatement of the year...

Several months later, I am only just now comfortable talking about what really happened when I took the medicine that--although I didn't know it at the time--would give me my life back. It was the most traumatic thing I've ever been through and I've never been more sure that I was going to die (obviously, I was wrong, thank goodness!). I had no way of knowing whether the medicine would help, or worse--do irreversible damage to my incredibly frail body.

Below is the post that I wrote a few days after my ordeal. I knew I needed to write it down in order to heal, but I never planned to let anyone see it. Now, here I am, five months later--publishing my rock bottom.

[When I woke up on Thursday (March 31st), I felt really great. That was the day that I was to start my new medicine. Mentally, I felt strong and optimistic--I was ready! So, I took my first pill and waited nervously. It kicked in after an hour or so and Herxed me right away, but it didn't last that long. I paused, regrouped, and decided to go for it--pill number two, down the hatch!

Pill number two was tougher--the Herxing was bad--and after that, the rest of the day just started to blur together in a clump of misery. It was a very tough day and my Lyme symptoms were having a heyday, but all in all I made it through four out of five of the pills that I was supposed to take. That was my breaking point--my body let me know in no uncertain terms that that was all it could handle. To this day, I honestly believe that five pills would have overdosed me.

I took my last pill (the fourth one) on Thursday at 5 o'clock. Around an hour later, I was stricken by the strongest vertigo I've ever experienced. Around 11 P.M. on Thursday night, my dear exhausted body FINALLY collapsed into a fitful slumber. There is simply no way I can put into words the hell that my mind and body went through on Thursday. However, Thursday paled in comparison to Friday. Four hours after falling asleep, at 3 A.M., day two began.

I assumed that by the second day the dizziness would have worn off, but not so. In fact, it was worse. Any time I moved, I became so dizzy that I would dry heave. I couldn't even sit up, but as long as I laid completely still, the dizziness was, for lack of a better word, tolerable. Any time I had to go to the bathroom, I had to crawl. As I sat on the toilet, I had to hold the wall on one side and the sink on the other side to keep from falling because the room was spinning like it was being sucked up by a tornado.

As the sun started coming up on Friday morning, I was beginning to doubt everything. I was starting to believe that I was feeling sick because of probably nearly overdosing my scrawny body with such a strong drug. And that is when the MEGA Herxing started. If you've never seen a Herx before, it can be quite scary. Some are big, some are small. Some last a few minutes, some can drag on for weeks. I have had many Herxes before--of all different kinds, but nothing even remotely close to what I experienced yesterday.

My body was slammed with full-body jolts that left me terrified, shaking, and physically/mentally exhausted beyond comprehension. As soon as I relaxed, my body would start convulsing and jerking all over again. That was the first time I'd experienced that bad of a die-off reaction. I don't know how I made it through a whole day of that and the best way I can describe it is that it was hell on earth. I made it through with the help of a guardian angel of a friend who stayed by my side for two days.

I can write about the experience, but what I can't put into words is the agony that my body went through--especially the mental anguish the treatment caused my brain to endure. Being too weak to talk or sit up is truly terrifying. Lyme disease takes you so close to the brink of death. It dangles you off the edge of a cliff so you are literally staring death in the face. If you want to live, you will have to fight harder than anything you ever imagined possible. And if you don't want to live--too bad; quitting is not an option.]



I don't write this story for pity. I write for healing. I write for acknowledgement  Most of all, I write this story as a voice for others who are going through the hell of Lyme disease. If our stories are never told, then no one will know how badly we need a cure for this disease! But in order for that to happen, we have to make our voices heard, even though sometimes that means telling the stories that are the hardest to tell. I am one of the lucky ones--after my ordeal, I was able to function again and now, five months later, I am functioning at about 80% of what I used to before I got sick.

"Alone we can do so little; together we can do so much!" ~Helen Keller

(I've been struggling to hit the publish post button on this post for days. Here I go...Gulp!)

Random Absurdities

Today, I am going to reveal a random absurdity about myself: Now don't get too excited, because it's actually pretty dull, but, here goes: I have a huge phobia about starting new medicines. I become irrationally convinced that if I take a new medicine, I am going to have an allergic reaction and die. I suppose this is the part where I need to embarrassingly (but happily) mention that I've never had an allergic reaction to any medicine, whatsoever!

So, where does this bizarre phobia come from? Well, I have absolutely no clue since, like I said, I've never had anything even remotely close to a reaction from a medicine. But, it sure does make Lyme disease treatment difficult for me! I am constantly starting new medicines, and every single time I have to begin a new one, that old phobia rears its ugly head and I feel the need to call my friends and say farewell.

So, would you care to take a guess at what's happening today? Yep, I'm starting a new medicine. I know nothing about this medicine other than the fact that it's a very unnattractive brown color that my kids would likely dub "poopy brown." I prefer to keep myself in the dark about this medicine until I see once and for all that I haven't keeled over from that ugly ol' poopy brown pill!

When you have Lyme disease and you start a new medicine, it is supposed to make you feel bad and that's supposed to be a good thing, because it means the medicine is killing off the bad bugs and causing you to Herx. The problem with my phobia about taking a new medicine is that it puts me on hyper alert for every single twinge or twitch that goes on in my body that could signify a sign of an allergic reaction.

And the problem with that is that I've got the hiccups right now, which I'm pretty sure is my body's way of laughing at me. Damnit, hiccups, you're messing up my phobia! How am I supposed to be convinced that I'm dying if I'm hiccuping and laughing every 15 seconds! Bah! The nerve!

Massage Junkie

For several days now, my body has felt like it is coursing with poison. My limbs feel heavy and my body feels toxic. I get this feeling often. It's my body's way of letting me know that it needs more help with detoxing. I do spend a lot of time detoxing, but when I get that icky feeling, I know my body needs a little more help and it's time to schedule a massage ASAP.

(Click for photo credit)

My friend came over in the evening yesterday and gave me a massage. I cannot emphasize enough how crucial massage has been in helping my Lyme disease recovery. I truly would not be here without it. I have heard that many people with Lyme disease Herx from massages, because it releases toxins into the body. In my experience, if I get weekly massages, I do not Herx from them. If I spread it out farther than that, I do occasionally Herx, but not very often.

If I'm feeling bad, having a massage once a week really recharges my batteries. If I'm feeling great, twice a month seems to be perfect for keeping me going strong. There have been numerous times when massage has taken my pain from a ten to a zero, and for that I am forever grateful.

The physical and mental anguish of Lyme disease is a heavy--sometimes, unbearable--load for those of us with this disease, and to have something like massage that can temporarily relieve us of that burden feels like nothing short of a miracle. Massage therapy has given me my life back!

Saddling Up Again

It's hard for me to believe, but it's that day again--Tuesday--the one day a week when I have to take four antibiotics instead of three. I'm still trying to recover from last Tuesday, which hit me exceptionally hard. I am really struggling to stay positive and not let the fear that's trying to creep in overtake me.

I know I've said this before, but much of the Lyme journey is mental. Recovery is at times excruciating and it's incredibly hard to gear up for something that you know is going to make you sick. With Lyme disease, you have to get worse to get better. What I didn't realize is that you have to get worse over and over again.

I am stubborn and I am strong and I know I can do this! Not knowing how much sicker I am going to get is the scariest part and I have to have strength enough to be able to take care of my two little kids. But it is for those two little munchkins that I draw the courage that I need to make it through this day, and the next, and the next...

Relapse

In my previous post, I mentioned the big "r" word: relapse. It's sad to post this, but it's undeniable--many of my symptoms are back. I was functioning at around 90% for a few months, and now I'm down to around 60% and declining a little more each day.

It has been a gradual decline over the past few weeks, and I am grateful that I've had time to adjust to one or two symptoms at a time. If you've ever had to take pain medicine and you've felt the exact moment of blinding pain when your medicine wore off, you may understand what I mean. Having all of my symptoms come back at once would be simply hellish.

There are a few things that happened that I believe caused me to relapse. The first thing that happened was that I got a massage after not having one for over a month (because I had been feeling so well). Many people with Lyme Disease Herx from massages, but--maybe because I've always gotten them two or three times a month--I don't usually Herx from them.

The second thing that happened was that since I was feeling so well, I did two weeks off of antibiotics instead of my normal one week off (with my doctor's permission, of course). When I started feeling well again and functioning pretty close to my old self again, it became extremely frustrating to continue taking massive doses of medicine. Also, we were going out of town to go camping and I didn't want the hassle of antibiotics to mess up my trip. Lesson learned: A little bit of an inconvenience is much better than a relapse. My body was not ready for two weeks off.

I believe that the biggest factor causing my backslide is stress. I'm doing my best to reduce as much stress as possible, which--as everyone knows--is easier said than done. And finally, the last thing that caused my relapse is that I've let my diet slide. And by "let it slide," I mean I'm eating gluten, dairy, and sugar again. Every day I try to get back on the Lyme diet, but every day temptation gets the better of me. I keep trying, though. I truly need to go to sugar rehab!

Even though I'm relapsing, at this point I can still function. I can drive and I can still take care of my kids. But over the last few days, I've seen a bigger increase in my symptoms and a bigger decrease in my energy. I told my husband the other day to think of me as a character in a video game with an energy bar over my head. I told him I had about 2 out of 5 bars of energy left, although that number fluctuates greatly during the course of a day. It sure would make my life easier if other people could see my energy bar!

Lymie vs. Healthy Person

I spoke with my doctor on the phone yesterday and the two-weeks-on-antibiotics-and-two-weeks-off plan has been abandoned. I'm back to three weeks on and one week off.  She also put me on a once-a-week dose of Larium in addition to my other antibiotics. That means one day a week, I will take four antibiotics, instead of three! Ay dios mio!

My symptoms are indicative that my Babesia is flaring up again. My night sweats are back; my headaches, leg pain and joint pain are back; etc. Larium is the medicine that caused a stronger Herx in my body than any other medicine, but, ultimately, it is the one that gave me my life back. I was pretty exhausted today, but I was able to push through the pain and fatigue of another medicine. Work your  magic, Larium!

The Courage to be Sick

 "A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way, and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us."
--Deena Metzger

Not only is there a war going on in my body for my physical health, but also a deep struggle for my mental health--for a better, stronger, healthier way of thinking and truly loving life. What I am seeking is the courage to be sick--to be truly content with a body that is out of control and doesn't cooperate. I am seeking peace, gratefulness, and acceptance of my weak body.

I want to face this day with bravery and confidence and with a good attitude. But, it's as though there's an evil Lyme spirochete sitting on my shoulder, whispering nasty things into my ear so that he and his pals can continue partying hard in my body.

Today is my first day back on antibiotics after taking a medicine break because of last week's mega Herx. Though I am terrified of taking my medicine today, I am working hard to change my focus from fear to gratitude. My goal for today is to focus on how strong my body is, not how weak it may seem to me.

Today, I will work to trust my body. It won't be easy; I haven't bounced back completely from last week's huge Herx, so I'm going ino this treatment weaker than usual. But I will trust my body to do its best to heal itself. I have to get sicker to get better, so today, I will be grateful for the intense battle going on inside of my body that I cannot see. Those feelings of sickness are my body's way of showing me how incredibly hard it is fighting for me.

I'm scared of being so weak. But when I am at my weakest, it is because my body is at its strongest--fighting with every ounce of strength it has! I will work hard to mirror that strength in my soul today as I battle the feelings of total weakness that must overcome my body before I can be well again.

Thursday and Friday

Thursday and Friday were very easily the most difficult two days of my life. Thursday was the day that I added in a massive dose of a new medicine for my Lyme disease co-infection, babesia. My body fought so unbelievably hard and I am so incredibly proud of it. I am speechless at how resilient the human body is.

On Friday, I went through the biggest Herx (when large quantities of toxins are released into the body as bacteria die during antibiotic treatment) that I ever could have imagined possible. There aren't words to describe what I went through. My brain is working in overdrive to process it. This is a wonderful article that explains the Herx reaction that occurs during treatment.

Here is a video of a woman experiencing a very strong herx reaction. Please be warned, it is very hard to watch. I spent all of Friday in a very similar state to the woman in the video, so if you watch it, you can see a snippet of the hell I went through. That's really all I want to say about that...

With each day I get farther away from Thursday and Friday, my body is growing stronger. Lyme disease treatment is a long, slow, intensely painful process. I've still got a very, very long way to go, but I'm confident that this round of treatment will bring me a world of difference!

Thank you so much to all who called, texted, emailed, and prayed for me! I deeply appreciate it!