Wednesday, October 21, 2009

How Lyme Disease is affecting me so far . . . . .

I just wanted to have a place where I can answer questions without always having to answer questions. Sometimes I want to go a day without even having to talk about what is going on. But since I'm still newly diagnosed. People are still calling every day or stopping by because they've heard the news. I am grateful! Please keep calling & coming by. But writing things down just makes it easier so I don't have to explain what I am going through. Or how Lyme affects me day by day. So here goes . .

For myself & some others, the lyme diease goes in "cycles". That's why in my updates over the past couple months, you see that I am "feeling better" & then "sick again". I thought whatever it was that was making me sick was going away, and just when I almost felt like I could get back on my bike again, BAM! I'd be in bed with the worst headache, intense neck pain, & muscle aches imaginable.

Week 1 (Hell Week)

For 7 days straight. I am literally in pain from my head to the tips of my toes. Nothing I took for pain even touched it. It makes me see things out of the corner of my eye that does not exist. I have no appetite & have to make myself eat. It makes me very irritable, depressed, & anxious. I have heart palpitations & my heart is usually either racing over 100bpm or just putting along at 58 bpm. Sometimes I am afraid if I go to sleep at night, I won't wake up. I have crazy sensations all over my body. My left hand goes numb & my muscles twitch all over. That part doesn't hurt, it's just strange. My husband doesn't know what to do with me. This week, I will call "Hell Week". Strangely, I am able to get out of bed a bit in the evening for my daily (most days) walk around the block. My headaches subside somewhat in the evening. Which is good because I don't sleep through the night as it is. During this week & the next, Amy Novak is the only one I talk to. She's the most understanding. During the other weeks, I try to give her a break ;-)

Week 2

After "Hell Week, there is a week where I just feel like I have the flu, but I am able to go downstairs and hang on the couch. I may return your calls & my Facebook updates are less negative. Symptoms are less intense.

Week 3

Then the following week (the week I am in as I write this note) I start to feel even better. And I may even put on jeans or shorts & a T-shirt instead of sweat pants or pajamas. Still, there is no blow drying my hair or applying make up. Just 30 minutes of household activity & I am exhausted. But hey, at least I shower every day.

Week 4

The last week in the cycle is my favorite week. It is the week that I feel the best. I even have a day or two where I almost feel "good" just weak & tired. I will be able to get out of the house & go to the grocery store or maybe even the mall for a bit or the movies. This is my favorite week. My husband gets to see me with make up on!! And I may even blowdry my hair.

Now this cycle is likely to change very soon. Once on antibiotics, Lyme Diease is a whole new ballgame. Not one I want to play. I will tell you more about that later. Stay tuned!

Saturday, October 17, 2009


Saturday, October 17, 2009 at 7:23pm

I was just diagnosed with Lyme Disease and I am terrified for my life. I have been sick for just over 2 months. Never saw a tick, a bite, or a rash. So who knows when I was infected. I was riding my bike 4-5 days a week & walking 4-5 days a week and playing tennis for fun with my fiance until one day . . . BAM. I was sick.

I was misdiagnosed as having mono (my titers are high) & subacute thyroiditis (my thyroid is enlarged & I had a severe sore throat) & saw 3 docs a NP. Never a high fever. Highest it ever got was 99.9. I was in bed. Fatigue galore! Just my body though, I didn't even take one nap during the day. I still don't. I started to feel better about 4-5 weeks after the intitial symptoms. 3 days before my wedding, I was able to get out of bed. And every day I felt better & on my actual wedding day, my only problem was stress, hypoglycemia, & just a little fatigue. But it was explainable because with all the wedding stress & out of town guests, I barely slept the night before.

I am terrifed right now. I try to stay positive like everyone around me suggests often, as if it's that easy. I have never cried so hard in my life. The past week has been very rough. I was just diagnosed last Tuesday. When my Internist (the only doc that didn't suggest stress reduction, all being in my head, & antidepressants) was at a loss as to what was wrong with me, he just said, "I'm going to run a bunch of tests & refer you to an Infectious Disease Doc that I work with at the hospital". He was sad that he couldn't help me. He asked if I had been in any tall grass or had a rash, the answer was not since end of spring, but he ran the Western Blot anyway. I had dismissed Lyme Disease previously in my internet search for a diagnosis because I never had the obvious rash or tick bite.

A friend (Kristi) of a friend (Amy) had gone misdiagnosed for 3 years & they just happened to be talking a couple days before my doc appt. I mentioned it to my friend & she said, "That's what you have! Kristi has it!" I think my friend Amy was even convinced (like everyone else around me) that this was all in my head. I didn't hesitate to look up the symptoms online & Yep, that was me. I had 80% of the symptoms. Although most minor. But they were there. I called & made an appt with Kristi's LLMD that she swore by. She said she has been in treatment for 8 mos & is feeling better. So I just needed to wait for the blood work to come back & wait for my appointment. Internist called me on

Tuesday & said, "We have an answer! No problem, you have LD, 2 weeks of Doxycycline & you'll be fine!" I took his prescription & thanked him for not giving up on me. Told him I already had an appt with an LLMD & I knew it! I will always be greatful to him for believing me!!

My mom was there when I got the call. She finally realized I was sick. I think she was in shock. The doctors had everyone close to me convinced that I was crazy. I had my husband with me at appts, my mom, my friends, . .. the docs had them convinced.

I took the Doxycycline & on the 3rd day I got really sick. I felt worse than I had ever felt. I was nauseous as hell, my neck was killing me & my head. I eventually puked my guts out & felt better after 5 hours. Was that a Herx? Never once have I felt nauseous this entire time & it was many hours after I had taken the antibiotic.

My LLMD is about an hour away from me & she trained under Dr James from the 'Under Our Skin' documentary & has contributed financially to his attorney costs. I feel I am in good hands. She said she had to take me off the antibiotic because my immune system is too weak. She is slowly putting me on several supplements to support my gut (70% of immune system is in your gut) & once I am on all the supplements, I will take the Doxycycline & Zithromax. I will also be on other supplements to support my liver & Naltrexone (low dose) for something else. I will also start with B-12 injections 3 days a week. I am supposed to be on a crazy diet that is Gluten Free, Sugar Free, Soy Free, Casein (dairy) Free. And all organic. HUH?!?! What do I eat. I have dropped 15lbs and now weigh 103lbs. As of today. I have no appetite.

My different symptoms come & go. The worst of it is the neck & headache pain. The two usually go hand in hand. I don't sleep through the entire night. I have muscle fatigue & muscle pain that comes & goes. Muscle twitching all over my body, but it doesn't bother me. My vision is worsening & I have the "floaters" in my eyes. Just to name a few. Today my muscles are so weak that I almost fell a couple of times. I am losing my muscle tone. I also have anxiety, but I think that has a lot to do with the fear of what has been happening to my body. Whenever there is a new sensation or symptom, it scares me.

I find myself crying a lot, every day. And it goes up & down, I may wake up depressed & a couple hours later, feel positive & then a couple hours after that, feel despair & hopeless and thinking that I can't get through this. I find myself getting angry at my husband because he isn't there for me. I don't think he knows how to handle this. My emotions are up & down & he gets defensive. He is working 10-16 hour days trying to keep us afloat. Most of my friends don't understand what I am going through. I think they did a quick Google Search & read that it's just what the CDC says, a 2 week dose of antibiotics & you're good to go! Little do they know, this is a long road. My doc says at least 6 months until I even start feeling better (just a guess). And it is going to get worse before it gets better. Not something I am looking forward to, and I am fearful.

My rock through all of this has been my friend Amy. I will forever be greatful for her. Since my diagnosis, my mother too has been there for me. I love my mom & need her more than ever. My mother-in-law has helped to cook & bring over dinner for us (me, my husband & his two kids). She calls & so does my sister-in-law. Just to check in & see how I am doing. My friend Barbara has started a "prayer chain" and asked everyone to pray for me. I try to sound as positive as possible when I talk to people. But really, I'm terrified. I feel very lucky to have these people in my life right now. I NEED these people right now.

I feel helpless & hopeless right now. I feel as if I have been given a death sentence. I cannot function, I am either laying in bed or laying on the couch. We don't know how we are going to come up with the money needed for my medical care. Insurance doesn't cover Lyme Disease. I need some hope.