Anyone miss me?

Wow, so it's been over 3 years since I've posted anything here. I guess it's time for an update if anyone's still reading this.

My health seems to only be deteriorating no matter what medications I try, and I've tried them all. I've done 2 rounds of IV antibiotics, countless oral antibiotics, natural and homeopathic remedies, OTC remedies ... you name it, I've tried it. I was recently on Samento and BLt for 3 months, and all of my symptoms got worse. My doctor and I couldn't tell if it was a herx reaction or actual worsening of symptoms, so I stopped those medications.

Nothing got better.

I'm now on 2 oral antibiotics: Omnicef and minocycline. This will be another 3-month trial. 3 weeks in, and I haven't seen any improvement yet. In fact, the detox medications my LLMD had me on (Burbur and Pinella) made the migraines worse, so I had to stop taking them. I realize sometimes you have to suffer through the worsening in order to get better, but with my current symptoms it was just too much.

The joint pain is the worst it's ever been. My fingers hurt so badly that some days I can't type. Other joints are also problematic, but my fingers seem to be taking the brunt of it. I have some kind of nerve issue going on in my lower back that causes random pain. It's there right now, and it essentially makes it so no position is comfortable. Then there's the extreme fatigue. On a normal day, I take about a 2-hour nap even if I got a good amount of sleep (I'm currently on Ambien because some immune factor on my blood work was low, and the doc says this immune factor regenerates when you sleep so I clearly wasn't getting solid sleep even if it felt like I was). If I've been active, the fatigue worsens, sometimes even after just a short while on my feet. Then it's a 2-nap kind of day. There's lightheadedness, tinnitus (my left ear is practically screaming at me all the time), swollen lymph nodes, migraines, general aches and pains, stiff joints (no matter what position I'm in, when I get up, my body just doesn't want to move), and random things that come and go at random times. Last night it was a tight muscle in one foot. So strange. I stood up and my foot just wouldn't move properly and I could feel the pull in the muscle.

That list could go on for a while, but you've probably stopped reading already. I'll just leave it at "Lyme sucks." I'm not sure I'll ever know if it's still Lyme, or maybe a co-infection, or perhaps the immune damage is already done to my body and can't be fixed. Whatever it is, it certainly makes life difficult.

I stopped working a while ago. I'll save the disability spiel for another post. For the moment, at least that's one less stress to deal with. Right now, I'm just working on the latest round of antibiotics and waiting for the results of a lumbar x-ray to find out what's causing the issue in my back. None of my current pain meds (I take tramadol and gabapentin daily) are helping it. Heat doesn't make it any better. Nor ice. Massage makes no difference since the pain isn't coming from a muscle. Fingers crossed the x-ray gives a hint of the cause.

Hopefully future posts won't be so negative, but this is just to give a general update on the last 3 years. I've been hoping to be able to post positive news. Maybe one day soon I'll have some.

Herx is a four letter word.

Herx reaction - when existing symptoms are stirred up and make you feel worse before getting better. That's the story of my life for the past 10 days. Everything hurts. I have fevers. I'm exhausted, well more than usual. I'm lightheaded. The blurry spot in my left eye is back. My toes are going numb.

I know I'm supposed to see this as a good sign, but it's still hard to live through it. At least I am pretty sure of what caused it. I'm taking Tindamax in addition to the IV antibiotics and that seems to be what is kicking my ass. Five more days of this medication. Yes, I'm counting.

In case that wasn't enough, I now have to take a mega dose of vitamin D2. It seems that my vitamin D just continued to decline so we had to try another route. What I was taking over the counter was D3. The D2 is taken once a week, and hopefully causes a shorter reaction time than taking a daily dose. I can't say that I'm not having any reaction to it... I've still been getting migraines and lightheadedness, but the reactions do seem to be less than with the OTC version. So, I'm working my way through it and hopefully the reactions will continue to decline while my D level rises. And at the end of the day, the increase in D should contribute to feeling better.

Sitting in the IV suite with others has its advantages because I have now found that many of us have low levels of vitamin D, and one other person also has an allergic reaction to it as well. It's nice to know I'm not alone.

It's been a while

Most days I'm too exhausted to write. Or too nauseous. Or too achy. It was a long road to get this sick, and it will be a long road to recovery.

For now, I'm celebrating a minor victory. My health insurance didn't want to pay for the medication that my doctor wants to treat me with. It took about 3 weeks to get the approval, and then they only approved 20 treatments, instead of the 60 that my doctor wants. Yesterday, the office staff spent an hour on the phone with my insurance company, and got approval for an additional 30 treatments. Still 10 shy of what my doctor wants, but we're getting there!

Otherwise, yesterday was pretty crappy. As if I don't have enough going on, I've come down with a cold and sore throat. Lots of body aches and pains, too. Today is starting off a little better. Hopefully this keeps up.

Day One

Today was interesting. The doctor has me on 2 medications. The first is the same one that I was on last time. The 2nd is supposed to help the first one work better. Although the first one took longer than the usual hour to drip (just to make sure I didn't have a reaction to it since it's been a while), there were no problems. The 2nd medication needs to drip for over an hour to avoid reactions to too much at once. Mine took closer to 2 hours. And I'm glad, because I guess things could have been worse if it had gone faster.

About 10 minutes before it was done, I started to get itchy. I didn't really think too much about it. Lots of things can make me itchy. But one of the nurses insisted I take benadryl before I left. She said I looked a little flushed, which is one of the side effects. I didn't really want the benadryl since it makes me so sleepy. I was worried about driving home. I'm glad I listened to her though.

A few minutes into the car ride, the itching got much worse. I mean, I felt like I didn't have enough fingers to scratch everything! My right wrist was on fire from the itch, and then it moved to my hand. After that, I noticed that my hand felt funny. My palm and thumb started swelling. My fingers got a little swollen, just enough to feel strange when I tried to bend them. This lasted until after I got home.

I guess it was good timing that the benadryl kicked in right after I got home. The swelling didn't progress anymore, and the sleepiness took over. By the time I woke up, my hand was mostly better and the itching was gone. I can only imagine how bad it would have gotten if I hadn't taken the benadryl.

Let's hope that tomorrow is better!

Round 2

It's all in my head... at least the proof is all in my head. After IV antibiotics, 2 different oral antibiotics, and some antimicrobial medications, I'm still not feeling any better. I'm worse, actually. Lightheaded more frequently, body aches, joint pain, numb toes, a blurry spot in my left eye, and the list goes on. The specialist finally ordered a brain SPECT scan, which showed several areas of decreased blood flow to my brain, one area of no blood flow, and one area of abnormal flow. All of this is indicative of inflammation from chronic lyme.

So, today I am going in for insertion of a new PICC and tomorrow I will start round 2 of IV medication. This time will be a combination of different medications which are supposed to better cross the blood-brain barrier. I'm hoping for some better results this time. All I can do is keep fighting.

It's just a cold.

At least, that's what it would be for anyone else. For me, it feels like my body is rebelling. It started with a fever for a few days last week. I thought it was from the new medication that the Lyme specialist put me on. But then the stuffiness started. Breathe Right strips were not working to help me sleep. When I don't sleep, everything feels awful. I had to resort to Afrin to get some sleep. The stuffiness has not gone away, and now it's mixed with migraines and dizziness. Wonderful.

It's almost 1 AM

I should be sleeping. This is one side effect so to speak that I can't get used to. I don't know what it's a side effect of, but it has only been happening in the last year. As tired as I am, when something wakes me up, I can't fall back to sleep. Sometimes it is hours before I can get back to sleep. So far tonight I've been up since 11:45, after going to sleep at 10:00. I had an exhausting day and fell asleep very quickly. I'm still exhausted so I don't know why I haven't been able to go back to sleep. Sometimes I just need to get out of bed for a little while and then try again. Then I end up falling asleep right before my alarm goes off. And then I'm a wreck at work.

Speaking of being a wreck, this week is going to be rather stressful. After all of the recent rain, we've had a lot of flooding in our basement. And mold. Who knows how long the mold has been there, or if it's been contributing to any of my health problems. So I'm anxious to have the basement fixed and the mold removed. But that comes at a price (my sanity). We have to have everything moved away from 2 whole walls of the basement (that's half of the entire basement). Everything has to be moved 8 feet out from the wall. All furniture, carpets, everything! When your basement is partially used for storage and the other part for living in, it's no easy task to find space to move everything TO. I spent the day today going through toys, trying to get rid of stuff, moving things around, and I feel like I got nowhere. Sure, there are several boxes and bags of stuff in the garage to be donated, and some trash, but there is still so much to do and I'm really stresses about it.

On top of that, Jackson's birthday party is on Saturday. So i have errands to run to prepare for that. Then family will be coming over after the party. Thankfully, I know they understand the situation and will forgive me for not having a spotless house. In fact, a few of them are even staying to help move furniture on Sunday in preparation for the french drain installation on Monday.

And of course, I have a job to go to all week.

Side note, I had no idea how many DVDs we had accumulated throughout the years. I filled 2 boxes while emptying the entertainment center, and that doesn't even include the kids' movies which are stored somewhere else!

Medication side effects

There is never a dull moment for me. Between migraines and fevers and aches and pains, I also have to deal with the side effects of the medication that I take to try to help all of it. I'm now on another antibiotic to treat a Lyme co-infection called mycoplasm pneumoniae. With all of the fevers, the doctor is convinced that there is another infection going on. Since my tests show positive for a past infection, the doctor is treating it. I'm taking an antibiotic called Biaxin. I've never been on this one before. The first thing I noticed was an awful taste in my mouth. And it just won't go away. After a few days on the medicine, I started to have stomach pain. The kind of pain that wakes you up in the middle of the night. Funny that one of the listed side effects is diarrhea, but since I never get the usual stuff, I'm having the opposite problem.

For the adrenal fatigue, my primary doctor has me on pregnenolone. It's not exactly a steroid, but technically it's the precursor to steroids. No surprise that I'm having the typical steroid side effects. If I take it without a full meal, I get really nauseous within a half hour. And I'm starving all the time. So of course I'm gaining weight. And my favorite... I have to pee constantly. I can't stay out of the bathroom.

So today I'm home. I woke up with awful stomach pains and a migraine. Hopefully things will get better soon.

My doctor's advice:

1. You need to quit your job.
2. You need to reduce your stress.
3. You need to get more sleep.

I'm not really sure how any of those things are going to happen. It appears that I am now in stage 4 (of 7) of adrenal fatigue. Basically, my adrenal glands are not producing enough cortisol (and other important hormones) to keep me going. This is one of the reasons I'm always so tired. I don't have enough cortisol in the morning to even get out of bed, and then it keeps going downhill throughout the day. It's also the reason I take much longer to recover from illnesses than most people.

The doctor has suggested a few band-aid approaches, but I am not feeling any difference yet. And the running around of the beginning of the school year is not helping. But this is life and I have to live it.

That didn't take long

My primary doctor thought we'd try one more form of vitamin D. She found a compounding pharmacy not too far away and the pharmacist said he could make a vitamin D cream to apply transdermally. The theory was that if my problem was being caused by the D passing through my digestive system, this would eliminate the issue.

So the nice pharmacist made up a batch of cream for me to try, and even shipped it to me free of charge (the sample was also free!). Based on his instructions, he gave me enough to last for 12 days which is long enough to see if I had a reaction to it. Of course, I only used half of the recommended dose, being afraid of having problems again. I applied it yesterday, and again this morning. On the way home from work tonight I started having the familiar lightheaded feeling. It only happened a few times, but thankfully I recognized it at once and I know it's being caused by the D so I won't continue with the cream.

My last experiment is to try only using it once a week. According to my doctor, if I can tolerate it in tiny doses, it's still better than nothing.