Tuesday, June 30, 2009

Going On Vacation??

Yesterday my boyfriend Bryan invited me to come with him to his family's annual reunion, a week-long retreat at a lake in Washington State. I am very excited about the opportunity to go with him, and it sounds like so much fun, but I am really nervous and a little scared about how I will feel (physically) while I'm there, and how I'm going to take all my medications in an inconspicuous way when we're all together in such close quarters.

We've been on weekend trips with friends in the past, but never for a week, and never with his family. I'm nervous about what he'll think (and what they'll think) if I'm too tired to do the types of fun, outdoorsy things that people do at reunions. What if I get really sick, or have a reaction to my meds? I'm going to go, of course. But I've got to figure out how best to address a lot of these concerns in my own mind. Being outdoors and trying to maintain normalcy in my life has really helped me to cope with everything that has happened this year, but going places is a bit more complicated given my "normal" right now.

Bryan is wonderful about everything, and has never given me any reason to worry about being tired or slow...he's very patient and always helpful. So the reality is, I really have no reason to worry about the family reunion. Bryan and I will have fun, no matter how I am feeling or what I can or can't do. I consider myself very blessed to have him in my life right now.

Anytime you are facing major challenges in life, it tends to become very clear who your true friends are. I'm really glad to have been blessed with such amazing and life-long friends that have really rallied around me to provide me with support. Bryan would be at the top of the list. When all of this is said and done, I want to be a better, more compassionate and understanding person, so that hopefully I can provide others with the love, support and hope that I have felt from the people in my life right now.

Thursday, June 25, 2009

The Latest

I had another doctor's appointment in Seattle on Monday. It went well, but it was discouraging in some ways. I had been feeling really well (more energy, less aches, no numbness in my arm & leg) for almost 5 weeks. Three weeks ago I finished my initial prescription of Mepron, and after three weeks off the medication, many of my symptoms have returned. It was wonderful to have a reprieve and feel better for awhile, but it is really discouraging to have things coming back.

My doctor was very encouraged that I had responded so well to that particular cocktail of antibiotics and other medications. Because she believes we are on the right track, I'm going to be doubling all of my meds, in addition to starting on a blood thinner. The latest research on Lyme shows that 80% of patients that develop chronic Lyme have a coagulation problem that prevents the medications from being fully absorbed. The blood thinners help counteract this. Last time I was in Seattle I had blood work done that confirmed this condition and so hopefully the blood thinners will make a difference as well.

It's great news that we have found the right cocktail, but doubling my doses combined with boosting absorption with blood thinners means that I will probably be a lot sicker for awhile. I was really discouraged by this, but I just have to remember that it's part of the process. I've read a lot of stories of people that respond well to medications after a month or two, but then as soon as they go off of them, the symptoms come back. This is the reasoning behind long-term antibiotic therapy.

I've read testimonial after testimonial of people that had been told by their doctor that after a month or two of treatment, they would just have to live with their remaining symptoms and ailments. In desperation, each of these people sought out the physicians who believed in long-term antibiotic therapy, and after a year or two of treatment (sometimes more) most of these people have made full recoveries. It's controversial, but the idea is that the symptoms are caused by an ongoing, chronic and active infection...and that once you finally eradicate the infection, the symptoms go away.

I'm about five months into treating the infection. While I'm very grateful to know what's going on, and to feel like I'm on the right track in terms of treatment, I have to repeatedly remind myself that it's a long process. I guess I'm a little impatient. I'm trying hard to be positive, and to focus on the good things in my life. When I feel good, I've been trying to make the most of it, which sometimes causes me to try to make up for lost time and I end up over-doing it. There's a balance and I'm trying to find it.

Tuesday, June 9, 2009

It's Amazing...

Just a quick post today, because I haven't put anything on here in a few weeks. I am still feeling like I've got good energy, and it's going on almost a month now that I've felt that way. I still get tired, and usually have to take a nap during the day, but I don't wake up anymore feeling like I can't get out of bed. I've also noticed that my joints are so much better, little tasks involving my hands are much easier now. I was able to chop up a bunch of potatoes last night, something that I dreaded doing a couple months ago, because it hurt to do it. I'm still having a little pain in my right foot and hand, but it's hardly noticeable compared to what it was in January. The pain in my abdomen has gone completely away as well. I also noticed the other day that the constant throbbing in my hands and feet has gone away. I'm very excited that perhaps I have turned a major corner in all of this. I'm finally feeling like maybe I'm starting to get better. I'm nervous because today is my last day on the Mepron, (anti-malarial) and I think it has done wonders for my energy...I've read that sometimes as people stop their treatment with specific medications sometimes the symptoms come back within a few weeks.

I will leave that in the hands of my capable doctor. She specializes in Lyme and other tick-borne diseases, and she's also a naturopathic doctor, so she combines prescription medications with nutritional supplements that help to keep everything in balance. I've read horror stories about people doing treatment for Lyme, because the antibiotics are so aggressive they throw everything else out of whack. I haven't had any complications from all my meds, and I think it's because she knows what kind of support my body needs right now. In addition to my prescription meds, (antibiotics, antimalarials, etc.) I also take several different probiotics, vitamin D, multivitamin, trace minerals, zinc, immune stimulants & other supplements twice a day to keep everything up. Even once I'm completely better, I will always have to make sure I'm doing things to support my immune system, since this is where Lyme does most of it's initial damage. My doctor understands this and is helping me tailor a treatment plan just for me. She is awesome, and I feel really blessed that I was able to connect with her for my treatment.

My next appointment is Monday, June 22nd. I will probably get a whole new meds regimen, and we'll see how that goes. Because I go every 8 weeks, my next appointment won't be until the end of August. It's hard to believe how quickly time is flying by...my doctor had initially told me that the first 2 to 3 months of treatment is the worst, and then you start to see steady improvement. She also said that by August we should have most of my symptoms resolved. I confess, when she said that I had a hard time believing her. But now, a little more than three and a half months into my antibiotic treatment, I'm very excited to report that all signs point to marked improvement!!