I was recently prescribed a new medicine to help with bio-film in my intestines. I have Lyme disease so extra measures are needed to help get my body back on the right track. My doctor and I discussed the dosage and because I’m so sensitive to medication we decided on a very low dose. The doctor’s office called in the prescription and my spouse picked it up the next day.
I started using the medicine and was surprised by how much I was affected by it. The fourth time I took the medicine I had such a bad reaction I nearly called an ambulance. But after about an hour and a half, the horrible pain, diarrhea, and weakness abated. The next day I thought “boy I’m sure glad I didn’t get the higher dose, that would have killed me”. But then I thought “hey, maybe I did get the higher dosage”. I never did check the package to see what dose it was!
So I looked, and sure enough it was incorrect, four times the dose we agreed on. The doctor’s office said they asked for the right dose. The pharmacy said they were told the wrong dose. Since nothing was in writing I had no idea who made the mistake that gave me such pain. But really, it was my responsibility to look at the package, wasn’t it? I couldn’t really blame the doctor or the pharmacy, mistakes happen. I have to take responsibility for my own health, lesson learned.
By the way, my health continues to improve. It’s been around two years since I was diagnosed with Chronic Lyme disease which I contracted around 2003. The progress is amazingly slow, but I have much more energy these days. And my brain actually works almost like it did 10 years ago before the bites. I still have tons of pain, heart trouble, and various neurological symptoms. But they have decreased as well. My first step to health started with the Geno Type Diet and I can’t thank Dr. D enough for all his good work.
I eat a lot of veggies every week. I don’t do it because I think it’s good for me. I really crave them. Maybe it’s because I have had Lyme disease for the last 15 years or so and needs the minerals. Or maybe I’m just a little strange. But here’s what I eat pretty much every week.
Large bowl of salad (four large dinner plates of greens) two heads of lettuce, one bunch of parsley or cilantro, four carrots, one bell pepper, one fennel bulb, six mushroom (the veggies vary somewhat every week)
Stir Fry – 1 lb of meat - rice, beans, or quinoa - two or three large plates of veggies. Right now I like Bok Choy, Peppers, mushroom, onions, garlic, and zucchini.
Soup or Stew – 1 or 2 lbs of meat with at least three large plates of veggies. I make my own broth so that uses at least one plate of veggies. Then I put in one of two more plates toward the end of cooking. For the broth I like, carrots, parsnips, celery, celery root, onions, and garlic. For the dish I like kale, spinach, sweet potatoes, carrots, jalapeños, peas, and squash.
So by the end of the week I’ve eaten about 10 large plates of veggies a week! When I go to the store the check out person often asks how many people in my family to which I reply “this is just for me”!
I don’t eat a lot of fruit. Again it’s just a personal choice. I usually have 1 piece of fruit a day and about 8oz of juice. I have a strong reaction to sugar so I’m sure that’s what keeps me from eating more fruit.
I wonder what will happen as I recover from Lyme. Will I need this many veggies? Will I crave them like I do now? If I’m lucky, I will recover from this illness and I’ll find out. I’ll keep you posted.
I had a huge relapse in my Lyme symptoms starting mid July and I’m just now starting to feel better. It was quite a shock and disappointment to have so much pain and fatigue again after starting to feel so much better. I had a lot of sleepless nights again full of pain. I missed a bunch of work and found myself getting angry and depressed. This wasn’t how it was supposed to go. I had it all planned out. I was progressing through the disease quickly. My doctor said I was “on the fast track”. So why did I get so sick again?
I’ve heard many people talk about getting a huge relapse after feeling well, but I thought that couldn’t happen to me. I’ve worked so hard to get well. I’ve researched and studied. I’ve taken all the meds and supplements I was supposed to take. I’m 100% compliant on the Geno type diet. Why can’t I get well? One of the answers is simply that it’s going to take more time for my body to heal. I’ve been sick for at least nine years and possibly for around fifteen, even though I was only diagnosed 1 1/2 years ago. The real question is why would I think I would get well in only a year? After I calmed down a bit, I did a survey on one of the Lyme forums I belong to. The results were these: If you’ve been sick 1-2 years, it tends to takes about a year to recover. If you’ve been sick longer than 2 years, it takes anywhere from 2 – 10 years or more. This made me feel a little better but I still found myself restless and depressed.
I finally realized that I had been “waiting” until I got well to get on with my life. I’ve been fighting relentlessly against the disease, but I forgot about me! It’s really easy to kind of sleep walk through your life when you are in as much pain as I’ve been in for the last year and a half. It has often felt like I was just trying to survive the day or night. I just kept thinking I could hang on and soon my body would be mine again. But since my timeline didn’t match up to reality, it was time to rethink this crazy way of living I’d gotten so used to.
I’m starting to accept this disease. Not give up or give in. But surrender to the fact that I have no control over how fast (or if) I heal and let my body do what it has to do, without any added pressure from me. When I think about it, that’s what I’ve been doing. I’d given my body a deadline and when it didn’t accomplish the task by my arbitrary date I was not only disappointed, I was angry with it. Is that anyway to treat this body of mine that has been working so hard? I wouldn’t treat anyone I know like this. I don’t stand for it when others treat me in this way. This must stop if I’m ever going to find peace. It’s time to wake up.
I’ve started to Garden again. Just an hour at a time, but it means so much to me to be outside doing something I love. I was diagnosed with Lyme disease about a year ago and have been unable to do much more than a little yoga and the basic walking needed in everyday life. At the end of an hour of weeding & trimming I was pretty exhausted and needed to lie down and rest for a while, but I was ok. I was able to do the same thing the following weekend with similar results. So I’m thrilled!
I was always such a physically active person before I got sick. I used to go on 60 mile bike rides, kayak, and hike. I slowed down gradually over the last seven or eight years (that’s about the time I got the tick bites that made me sick) until last year when I ended up in the hospital. I feel so grateful that I’m actually getting better. I’m working 6 and ½ hours a day at a desk job now. I’m able to cook and shop for myself. And now I’m starting to garden again.
There is something so satisfying to me about working out. I think one of the reasons it feels so good is it helps me release pent up emotions. It’s always been the way I “let off steam”. So being unable to exercise has been really frustrating and also a little enlightening. Since I couldn’t just exhaust my body until the emotions let go of me, I’ve had to find other ways to work through my sadness, anger, and frustration. I’ve had to face people and situations that I would have literally run from before. Now that I’m getting well I hope I don’t forget the lessons that being sick have taught me.
My mother died last month. She had a stroke two and a half years ago and then another massive stroke three weeks before she died. My Dad decided to bring her home from the hospital under Hospice care for her final days and I joined two of my siblings in caring for her the last five days of her life. It’s a wonderful experience that I would do again if the situation presented itself, but it’s not for the faint of heart. It’s very difficult physically and emotionally to care for a body that is dying. But it’s also incredibly rewarding. It felt like the greatest gift I’ve ever given my Mom (and my Dad).
One of the hardest parts was living in my Dad’s house. My Dad is eighty one and their house, a three bedroom split level, is completely cluttered with years of accumulated purchases and gifts. They seldom throw anything away. I have chemical sensitivities (Explorer/Non secretor) and the house was full of scents, molds, and dust in every room, in every cupboard. I lived there for ten days and each day I got a little sicker. The cleaning products, the perfumes, and the “soft” water were the worst. Thank goodness no one smoked!
Eating was a problem. As most of you know, when you leave the safety of your home it’s hard to be 100% compliant. But, I kept it simple and cooked for myself as much as possible. My family was kind and tolerant about my food choices (except one, but that’s a story for another time). I’m recovering from Chronic Lyme Disease, and they all know how sick I’ve been, so they wanted to support me in whatever I needed to do to continue on my road to recovery. I’m constantly surprised at how little vegetables and fruit “normal” people eat. I’ve been eating this way for so long I forget. The rest of my family seldom ate any veggies except a few pieces of lettuce from a bag (ugh I can’t stand that stuff; it smells really weird to me). And fresh fruit would go almost untouched. But, of course everyone was “stress eating”, lots of chips, candies, and pastries were consumed. And years ago that would have been what I ate in a stressful situation. Who could blame us; we were literally facing death.
All in all, I’m so happy I could help and so happy I could come home to my scent free, fresh food stocked, home in the Redwoods.