May Lyme Awareness- My Story

May was Lyme awareness month, but I didn’t finish writing this post until June is almost over… I am still posting to help others be aware of what Lyme can do. Thanks to my Lyme, I have a hard time getting things into words, so pardon the rambling nature of this post.

I never planned for Lyme Disease to take over my blog, but the past months have left me unable to do much of anything creative and barely able to take my garden camera walks to get photos of my flowers. Since May was Lyme Disease Awareness Month, I decided to tell my story to hopefully help others who might be going through something similar…

My journey with this disease began well over 10  years ago while  I was still working at the greenhouses we owned while raising our 3 sons, and working in my “spare time” making fabric creations to sell at art and craft shows.  Being a “professional” gardener, I also spent as much time as I could (in more “spare time”) digging in the yard to create my many, many gardens.  My Lyme seemed to just slowly sneak up on me, but back then I didn’t have time to be sick so if I felt like I had the flu, which is the usual first symptom of Lyme, I would have just worked through it. I had also been dealing with lots of back pain and sciatica from arthritis in my spine caused by a car accident in 1988, but I had been able to control much of that pain after learning self care in Physical Therapy.  Over-doer’s aches and pains seemed quite normal, and a good night’s rest usually had things feeling better…. Until….

Sometime near 2000 I began experiencing vision problems, so I thought I needed new glasses…  That wasn’t as easy as I thought it would be. I got the new glasses, but couldn’t see with them.  After 3 tries, the eye Dr gave up on me and I had to go to another one. I finally got glasses I could see out of, but my vision kept changing often.  Good some days, bad others… No rhyme or reason… Eye doctors said it had to be something else going on, so I went to my family Dr.  He had no ideas why my eyes were causing trouble… Tests were run, and everything showed “normal”… no answers.  I also started noticing “floaters” in my vision that concerned me and sent me back to an eye dr.  Things looked OK, but I was told that if the floaters changed, to make an immediate appointment to get things checked out again. While dealing with my eyes, I was also experiencing more and more pain over my whole body… The family Dr. noticed that something was going on when I was in the office with my guys for a regular check-up and I mentioned the new pains. He thought it was from my working too much… Greenhouse work is hard, but when the off season came in Summer, the pain was still there, so not from too much work.  Maybe arthritis from the car accident was the cause??  I was sent to Physical Therapy a number of times over the next few years.  I got a little relief in the first couple weeks, but as each session went on, things would get worse again by the time I was discharged… Frustrating for me and the therapists. The last round of PT landed me with an appointment with a rheumatologist who diagnosed me with fibromyalgia.  Finally, I thought I knew what was going on. There really isn’t anything that can be done for fibro, other than pain medications and modifying my lifestyle… I did OK for a while, but  I was also forgetting things a lot more. Blamed on fibro fog… I just had to learn to live with it… Chronic Fatigue syndrome was added to my diagnosis along with chronic Epstein Barre virus.

Long story short, many years passed with more and more pain, more fatigue, and vision changing from day to day.  I was tested for so many different things and every test came out fine… I was treated for low thyroid and told I would feel like a “new woman”… Not… still wiped out and in pain all the time even with lots of pain meds.  Bursitis in my hips and arthritis in my hands were added to the diagnoses, but things just didn’t make sense… some days everything hurt, other times things were better. For a while pain was in my hips, then they felt better as my knees got worse, and then something else.. Then things would go around again…  I was told by a friend that she had been diagnosed with Lyme disease and had similar symptoms as I had. After a year or so of treatment she was feeling better, but when I mentioned it to my Dr. she didn’t think it was that. A test was ordered that came out negative, so I didn’t have Lyme… the test said so.

After we started caring for two granddogs, while our son was stationed in Germany, I started feeling much worse… more crazy things happening. More fatigue, shakes, trembly muscles, etc.  I had trudged through the woods one day shortly after the dogs arrived when they decided to take off from the yard on a romp.  The dogs returned, but by the end of that summer, I was feeling even worse… I didn’t think things could get worse than they were…  By now I was barely functioning. I had lost my ability to create my art, I struggled to make even small art cards.  From 2002 to 2007, I had been quite successful selling my art quilts, table decor and other items at art and craft shows even dealing with my pain. By 2008 I had to stop selling at shows after the pain and fatigue got too bad to allow me to do the set-up and standing needed to do shows.  2008 also began the decline in my creative abilities… I began forgetting names of even close friends, losing words for common items, and more crazy things. I had someone else tell me they thought I might have Lyme again… I should find a Lyme literate doctor… where would I find one of them, and from what I had read, none took insurance, so I gave up on that idea again….  I began going to a seniors aquatics class at a local pool in 2012 which was so wonderful… The only time I was free from pain was in the pool… for about a year… then pain started increasing again… I started having days I could barely get out of bed, and then ended up back in bed within an hour or so after getting up… I made my husband do the grocery shopping, I didn’t want to leave home at all… No life I wanted to live, but no one had any answers.  I had not worked since my last full time year selling my art in 2007, and after a part time season in 2008 at a greenhouse…  I could barely keep up with a few online shops and wasn’t making much new art at all… the scariest was when I started having trouble remembering names of flowers and plants in my gardens… I lived and breathed flowers for nearly 30 years by then.  I was scared to death that I was starting with early onset Alzheimer’s, my memory was so bad.  November 2013, I ended up being treated for a sinus infection with an antibiotic and without realizing it, a lot of my pain left for a bit. I was able to make the Christmas wreaths with less pain meds than in past years. I had 2 weeks of feeling a bit better before things crashed completely… I didn’t care to go anywhere, even to see the grandkids on Christmas morning.  Finally, another friend bumped into me in the grocery store while I was dragging myself, propped on the cart through to get a few things we needed. She said she found she had Lyme disease and was feeling so much better after being treated. She knew I had been feeling bad for a long time and my symptoms seemed similar to some of hers… 3rd time someone mentioned Lyme… She gave me her Dr’s name and number with instructions to call that day for an appointment. I called and a month later, met a wonderful Dr who actually listened to me and looked at all they symptoms I had, and after a bit pf poking and prodding with lots of “ouches” from me, I was told I had Lyme and at least 2 other co-infections from bites of deer ticks.  I left the office less a lot of blood for more tests, a prescription for 4 months of an antibiotic and a list of natural herbs and probiotics that I should also take. I also had a new diet to follow… No sugar, white potatoes, pasta, yeast, artificial sweeteners, peanuts, and more… Whew! what was left!  I was told to hold onto the prescription until my test results came back. I had to have a positive test before I could take them and was told that the tests are not very reliable, but I had hope.  that first test was negative again… the third negative I had had… This time it was suggested I have a test done at a lab in CA that specializes in Tick born diseases. After paying for the tests, and waiting a couple weeks, I got the results… Positive for Lyme!!  All those years of things getting worse and worse, and it was probably Lyme all the time…. Finally a Dr with answers!  We figure I had been bitten at least 3 different times (each time things got worse really fast).  I never gave much thought to the ticks we would pull off the cats and dogs.  I had been crawling around in the perfect tick habitats for years in my gardens and in the woods… the little creatures are so small that they are very easy to miss. I did have some odd rashes, but the Drs that looked at them thought they were allergic reactions or whatever… even though they lasted a long time. They were not the usual bulls-eye type rash that often occurs around a bite site.

I have now been treated for nearly 4 months now. The first 2 months were very frustrating since I felt worse as the bugs started dieing off, but a new medicine added month 3 resulted in fewer of the horrible headaches I had been having.  I still have tons of stiff, painful muscles and joints and I still haven’t gotten much of my brain back, but finally I am seeing some hope for a better life.  I am using natural herbs and supplements along with the medicines to help move things along as fast as possible.  Each change in treatment seems to throw my body for a loop, but slowly I am seeing small improvements.  Finally, I don’t dread the future… I have also had a few tiny peeks of creativity again… small improvements, but improvements.  One of the “bugs” I have in addition to the Lyme is Babesia, which is related to malaria, and tough to get rid of.  It is amazing how much trouble can be caused by a little tick that is not much bigger than a poppy seed… Easy to miss, but carriers of so many diseases.

For a while, I was afraid to go out into my yard and gardens, especially after finding a bunch of the ticks one day.  I  now use a spray made with Geranium essential oil as a repellent when I go into the gardens. I also check for ticks any time I have been out in tall grass or near the woods… We all need to watch for these nasty little disease delivery systems…  If you find you have been bitten by a tick, and it has been attached for a couple days or you don’t know how long it has been there, be sure to get to a doctor and get treated with doxycycline for a couple weeks to knock out the bacteria before they can get deep into your body when they get much harder to get rid of…  Most early symptoms are feeling like you have the flu, and then arthrits in joints like the knees and more.  If undiagnosed early enough, the bacteria attack the brain and just about every organ in the body… When it gets established, It can hide from our immune system, making it really hard for our bodies to attack it on their own.

Learn to be aware of deer ticks habitats… leaf litter, damp areas, tall grass, edges of woods, deer trails in the woods, and more.  The ticks also feed on mice and other small rodents, rabbits and even birds.  They have been found in most states in our country and many other countries… They have been spreading all over…  Using tick repellents when hiking or walking in tall grassy areas, and doing tick checks are needed to be sure you don’t pick one up.  Creepy to think about, but preventing the diseases is much better than trying to get rid of them after they have run amok in the body for years and years… the longer it’s been there, the harder it is to get rid of.