This has been an interesting February so far…. This won’t be a very artsy or quilty post, with just a few snowy garden photos. Long and rambling, but therapeutic for me to get things “out”, and maybe someone else might find they aren’t going crazy like I felt for so long. January ended with an appointment with a new doctor who actually looked at symptoms, asked about things, poked and prodded, and more. I left the office a couple of tubes of blood lighter with a clinical diagnosis of late stage lyme disease and at least 2 other co-infections. I also left with a page of things I can and can’t eat, a list of natural herbs and supplements to start on, and a prescription I was told NOT to fill yet. Lyme disease is pretty controversial as far as treatment is concerned unless it is caught right away. Mine has possibly been hanging around for 3-10 yrs or so based on how long I have lived with pain and other symptoms that baffled doctors. I never gave a thought to ticks that could be lurking in the woods, tall grass or other places as I literally crawled around in and through their habitats while working in my gardens. The dogs have had ticks on them, the cats have had ticks on them and we have even found one crawling on our couch, I just never thought about one (or more) snacking on me. Over time after infection, the bacteria multiply and hide out just about anywhere… muscles, joints, brain, etc. even interfering with the immune system, causing test results to be off. Even with nearly all the symptoms, the doctor is not allowed to let me take the antibiotic to treat it without a positive test result… After a week wait, the results were in…. everything “essentially negative”…. Aaarrrggggg…. Not uncommon…. Now I can’t fill the antibiotic prescription until I have another test done through a lab in CA that specializes in tick born diseases… That test is more reliable, but not covered by insurance…. 🙁 At least the day I got the bad news about the tests, it was a pretty day with bright blue sky that looks great with the pure white snow covering the ground. Nature trying to cheer me up 🙂
Coming out of that doctor’s office, I had more hope than I had had in a long time that there really was a reason for my increasingly roaming pain and fatigue that sometimes makes it hard to sit even propped on pillows on my couch. I even found that much of the pain blamed on fibromyalgia can be caused by lyme or co-infections instead, which are more treatable. Getting the test results was a huge blow to the hope I had, but at least I had my list of herbal treatments and supplements. I began a lot of online researching and chose what looked to be the best thing to try first since I only could afford one item to start with. Teasel tincture was on the top of the recommended list, and looked to be the best one. I never thought of Teasels as any more than a prickly weed that scratches me as I mow near it, but I might be changing my mind about them. The other thing I have learned from my research and treatments so far is that things will get worse before they get better…. In my head I was thinking, “Yea, right, I can’t feel worse can I???” Yes, I can… I started taking the Teasel a couple days after my appointment, and was amazed at how horrible it made me feel after just one drop of the stuff on day one. The dose is increased very slowly, up to 1 drop 3x per day, then adding one more drop at a time each week. After 2 weeks, up to 6 total drops a day, I was having a little less fatigue and even got the dishes caught up and cooked a few things. Yesterday was an other increase day… So much for the better days… back to arms feeling filled with lead, and lots of tiny twitching, creepy feelings in the muscles… just like the first few doses caused. Amazingly, a long soak in a hot epsom salts made things feel better…. The last epsom salt bath left me flat on my back for half a day… Now I need to think about “Detoxing”, eating well, drinking plenty of water, and paying attention to how my body feels after any change in what I do. Huge change for someone who has spent her whole life just trying to do my best at everything else but paying attention to herself (that’s being selfish, isn’t it?)… Now I am entering the world of trying to figure out if what I am feeling is a flare-up of symptoms, a herx reaction from bacteria die-off, reaction to a new treatment, or reaction to something I ate.
I have know for years that I need to watch what I eat since I deal with low blood sugar. During the worst pain/fatigue flares my sugar levels tend to crash all over the place (and forgetting to eat can make me so sick I don’t feel like eating). I had my two main vices… Hershey kisses- Milk chocolate only, and Diet Pepsi. I used the caffeine and chocolate to keep myself working crazy long hours with barely time to grab a couple minutes to eat real food during the last few years we had our greenhouse business (the chocolate kept the blood sugar levels from crashing). Both also helped me to deal with the increasing pain I was having, after I had used my daily allotment of pain meds, I medicated with caffeine and chocolate. I did limit the Pepsi to one 24 oz bottle or less per day, and one regular size bag of Kisses per week (during the really crazy months, I did up that to the “big bag”) When at home in the off seasons for the greenhouse, I spent every hour I could in the sewing studio working to produce items to sell at shows, or working in my gardens, again using the caffeine and chocolate to keep going. After we lost the greenhouse business and I had to stop selling at shows , I cut back intake of both considerably. I even totally cut out the Diet Pepsi for over 6 months one time, but found it really helped pain meds to kick in faster, so started again with around 12oz per day. I tried to keep the Kisses out of the house, but found myself eating anything and everything in the kitchen during cravings, even cooking up batches of chocolate syrup with cocoa powder, eating it like pudding… I found I abused the chocolate (and food in general) much less with the Kisses back in the house. Other eating habits varied from proper, good meals to stretches of whole grain toast with fruit spread or toasted cheese sandwiches when I felt crummy and nothing looked good to eat. Now I have LOTs of changes to make with my eating.
All sugars, sweeteners, white potatoes, yeast, pasta, and more are on my do not eat list, and has proved to be really hard to deal with. I’m allowed to use Stevia for a sweetener, but that stuff has a really horrible aftertaste! Yuck! Being a farm girl raised on steak and potatoes, dropping potatoes is hard, along with missing my whole grain bread for toasted cheese sandwiches (sandwich wraps are nasty to my taste buds). I did find a yeast free bread recipe I will try with whole wheat flour (gluten isn’t on my bad list… has never caused tummy issues). Dairy, eggs, and meats are on the “good” list for protein to keep blood sugar levels even. Overnight oatmeal with milk, yogurt and chia seeds is pretty good with fruit for breakfast, so my Frosted Mini Wheats aren’t missed too much… (just the crunch). Lots of Lemons are encouraged, so putting them in my water helps keep it a bit less boring, but some protocols want you to drink at least 3 liters of water a day… Yikes! I start gagging on even the lemon water half way through liter #2 or sooner some days. Nuts are supposed to be good for me, but I will have to work on building up a taste for them… Not really a fan. Staying with good varieties of yogurts is no problem for me since I have been a label reader and really picky about them all along. Most yogurt on the shelves is more sugar than protein. I love Greek style with fruit, so I can still eat that and now make my own since it is so expensive to buy. Lots of raw veggies were suggested, but for reasons unknown to me, salads and most raw veggies seem to turn my stomach into knots even taking enzyme tabs. Cooked, they don’t cause as much trouble. I have to stay away from peppers of any kind, cooked or not. Onions have to be cooked only a certain way or I’m doubled over in pain, and garlic does the same (they are both supposed so good for you, too). I do like more types of veggies than I did as a kid, so that is a good thing. I found that subbing roasted cauliflower for the macaroni in mac & cheese is pretty good (in small doses due to the lovely gas causing crucifer) Dropping the chocolate Kisses began causing much distress again, so I tried the Special Dark variety and found they will satisfy the chocolate craving with less sugar. I will have to keep strict limits, but the nasty taste of the stevia sweetener that hangs on for hours is not working for sweets. I am thinking that using honey for a sweetener in limited amounts and popping the random dark chocolate has to be better than becoming so agitated that I need Valium to “chill out”. The hardest thing is finding something to eat when I am feeling my worst, and everything I look at turns my stomach upside down. I know I have to eat, but nothing looks or smells good… That’s when my toasted cheese or toast came in in the past. I hope by paying more attention to how my body reacts to what I eat, I can find the right combos of foods to get this body better without feeding those nasty bacteria.
With all the researching I have been doing online about Lyme and co-infections, I have learned so much… I have dealt with some really spooky, weird, and confusing symptoms that when I mention them to a doctor they look at me as if I’m a total “Looney Toon”… I got so I was afraid to even mention some things due to the “looks” I would get. One site online- Tired of Lyme, has been a super help understanding many of those crazy things I have dealt with. I have long felt I am a “freak of nature”… so many meds do the opposite of what they are supposed to, I get super sick feeling from a shower even if I have eaten before, creepy-numb-itches, random stabbing pains that pop up for seemly no reason, major changes in mood and more… In the many articles on the site, I found ,that I’m not alone and also found ideas to try to reduce some of the symptoms. I found that losing “the old me”, my brain power, and even my creativity are commonly caused by lyme infecting the brain. That gives me hope that when things get cleared up, brain fog should clear, I might get back to the “me” that wasn’t the complete hermit I have turned into, and my creativity should return. I might even be able to dig for more than a few minutes in my gardens before becoming a wilted puddle in bed. The Tired of Lyme site is pretty straight up, no sugar coating what to look forward to in treating this nasty disease… There will be bad days, worse days, and a few good days, but with perseverance, things can get better…. As much as I would love to be back my old self tomorrow, realistically I know that won’t happen… My “word for the year” PLAY, is helping me deal with all this a bit better, and my grandkids are helping me with learning to play again… I have been watching the older two after school and the art supplies have been getting lots of use. (Jenna is shown above working on cards for Valentines Day.) Who better to learn how to play from than a 5 year old… I have to try to get my naps in before the kids get here, and some days I might be the “couch grammy”, but playing with paint, paper and more with them is a good distraction. They even like my homemade yogurt as a snack!