In early June, I made the commitment to myself to spend the summer trying every single suggestion that a doctor gave to me. I want to get better. It isn't that I haven't wanted to get better in the past but right now I am willing to feel worse, or herx, and miss out on social events if it means that I can make some progress. Sometimes I stop taking a drug for a week before an event, like a wedding, so that I will not experience any die off reactions, or herxing as we call it, and therefore I will feel better and be able to attend the event. I try to balance my treatment with my quality of life. When you have been sick for 11 years, it changes how you view taking breaks from the treatment. I have been forced to figure out how to have a life, or as much of one as I can, while being sick. If I could just power through all of these drugs and treatments and get better, I would do that in a heartbeat. The problem is that with Lyme disease the treatments can be just as bad as the disease. I definitely feel worse when I take antibiotics and parasite medications. Sometimes I have to take a break and feel well enough to see my friends for a weekend. For this summer, I decided to take all of the medications, supplements, and suggestions that my doctor's prescribed no matter what I might miss because of feeling worse.
It is now mid-August and I am happy to report that after following all of my doctor's suggestions, I have more energy. I am thrilled but also kind of shocked. For years I have taken so many drugs and they only help me about 10%. For the past 8 to 10 weeks, I took high doses of Alinia and Malarone drugs for my Babesia infections. The first week on the drugs, I herxed so badly that I spent a week on the couch due to fatigue. Eventually, I could tolerate more and more of the drugs. I also hunted down every supplement that all three of my main doctor's recommended. I ended up calling some strange telephone numbers in different states to hunt down supplements. One woman on the other end of the phone asked me if I wanted the supplement for my garden. I had to tell her that I was supposed to ingest it. After taking so many supplements, medications, and herbs a day that my stomach constantly felt overly full, I decided to practice yoga, sit in hot tubs to raise my temperature to kill the bugs, and exercise (as much as I could). I even changed my diet. I made the yoga and exercise a high priority so that no social engagement would ever come before them. I felt empowered that I was finally using all of my resources to try to get better. I had no idea if it would work because of my slow progress in the past but it did!!! I have more energy now. I am not cured but I am more functional. I can do multiple things in each day. I still can't work or finish college but I am out of the house and exercising! The big question is: what is helping me? Is it a combination of medications, changing my diet, and doing yoga? I tried so many different ideas at once that it is hard to tell. My next task is to figure out what is finally helping me.
Thursday, August 06, 2009
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3 comments:
Erika, i don't know if you check your blog regularly, but came across it again as i was googling lyme and dr green. I've had lyme for 20 years (known for 5) and have tried a lot of alternative, but finally realized i need more...i've seen dr green twice. just wanted to find out from you your experience with her. did you stay with her? if not, why? do you feel like she helped you? i hope you are doing well! thanks for your time! Diane
That's so great that your diligence paid off! It's hard to stay on course with treatments that make you feel awful, but in the long run it's worth it.
My son was recently diagnosed. He's 13. he was also diagnosed with meningitis due to Lyme and now encephalopathy. It gets me so mad how the dr's and the whole medical community downplay this disease. He just had 18 vials of blood drawn to check many things including co infections, I live in NY, Long Island and have to pay to see a dr. in Ct. cause no one here recognizes the seriousness of the disease. He's on 3 abx. for a min. of 9 months. Tindamax 2 consecutive days per week. that drug terrifies me....
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