Wednesday, January 14, 2015

Lyme Life Update

I was going to put all this in a FB status and realized it's easier just to put it all here.

I had an appointment with my Lyme doctor today. Let me just tell you how amazing this woman is. I couldn't ask for a better physician. At my first visit, we sat together going over symptoms, side effects and treatments for more than two hours. She didn't even leave the room. Today, we sat for an hour together going over what's working, what's not and how I'm feeling compared to the last visit. She's never in a rush, never trying to push me out the door. She even gave me her cell phone number so if I have questions between visits, I can reach her easily. She is incredible and has restored my faith in traditional medicine.

Last month she put me on three hard-core antibiotics. I dealt with a lot of nausea and had to orchestrate each dose carefully so I didn't take anything on an empty stomach. I'm hoping that's not the case this month, but I'll be taking precautions. Now, we've gotten rid of two of those original medicines and I'm on three additional ones. This puts me on a total of four antibiotics and six supplements. Add to that two daily pain killers, a sleeping pill, an anxiety pill, and two pro-biotics I have to take so the antibiotics don't give me an infection. Some of these pills are taken once a day, some twice. Some are switched over mid-week so my body doesn't get too used to one medication. I feel sometimes like this is all a giant game of keep-away/sneak-attack with the Lyme bacteria. I am also on a restrictive gluten-free, dairy-free and sugar-free diet. I can have minimal foods with those ingredients in them, but the more I have, the worse I feel. The last two weeks has been proof of that. The good news is that I'm learning how to better deal with what I can't have. I've found substitutes for some things and others, I just do without.

I've lost count of the number of pills I take on a daily basis. I think it's partly due to the fact that I hate that I have to take so many. I've always been such a homeopath when it comes to medication and trying to heal the body naturally. But the bottom line is, this is the fight of my life. Literally, it's a fight for my life. With the wrong treatment or too-aggressive of a treatment, I can have organ failure. Already, my body has gone into menopause because of the disease itself. The doctor is optimistic that once the Lyme is under control that normal ovary function will return, but in the meantime, I'm on two hormone replacements. So this isn't just some fatigue and arthritis I'm dealing with. It's some serious stuff with very real consequences.

One of the concerns I had, given my history with ovarian cysts was that I had another one. I've been having a lot of abdominal pain on the left side (reminiscent of what I had before my surgery in 2012 to remove my right ovary). At first I thought it was ovulation pain, but when my doctor told me a few weeks ago that I'd gone into menopause, I knew that wasn't it. We're still not completely sure what the problem is, but thankfully an ultrasound showed that my left ovary is perfectly normal and not cystic. Since surgery at this point in my treatment could send me back to square one, this was a true blessing.

My doctor has also begun treating me for bartonella (I told Midget I have Barton Bellas...unfortunately my version is pretty aca-awful), which is a common co-infection with Lyme disease. Bartonella is also the cause of cat scratch fever (not to be confused with the one Ted Nugent sings about. I think you'll need an ointment for that one). (Isn't it good to see I haven't lost my sense of humor in all this?) Since Bartonella tests aren't very sensitive (means that you can have it and the test can still come back negative), she's decided not to make me go through the expense of it. Since bartonella can be passed through ticks, fleas, body lice and through cat scratches, it's hard telling how I got it or when. We just know that it's likely I have it based on my symptoms and since it's treatable with antibiotics (hey, what's one more, right?), we're moving forward with treatment.

Overall, I have good days and bad days. On the good days, I tend to push myself without realizing it. That's one of the troubles with chronic illness: when you feel good, you want to leech as much from the day as possible but sometimes that can set you back days, if not weeks. I felt really great last week and over the weekend, so I (with Midget's help) put my office back together, which consisted of moving furniture and LOTS of boxes and totes. I'm paying for it now with pain and muscle fatigue. Those are what define my bad days (along with mood swings, mental fog and complete exhaustion, among other symptoms).

I try very hard not to complain. A positive attitude is vital to get through this but I never imagined being this young and feeling this old. Unfortunately, it's a reality and something I'm going to have to deal with for quite a while still. I've learned to control the things I can control and let go of what I can't. I've had to learn to say "no" more often. I've also had to let go of toxic situations and people. I've grown distant from some friends and lost others altogether, but I can't focus on the losses, only the gains.

One of those gains has been how supportive my family has been every day. They've really stepped up and done what needs to be done around the house. Hubby hasn't complained once about my mood swings or the days when I have no energy to do anything. And the kiddo has totally gone out of her way to do more than her share of chores to help pick up my slack. I could not imagine dealing with this disease without their support.

I probably won't update again for a while, but since so many of you have asked and have seen updates so far, I wanted to let you all know what was going on.

Long story short, I'm not in remission, but I'm on my way. I'll take it. :)