My Lyme Story
Remember me? I began the year with such hope and so many great new year's resolutions and then my life got turned on it's ear...again. Ever since I was diagnosed with Lyme Disease I have been in what feels like a tornado. I'm still sick, VERY sick, but now I have new problems, not solved problems. I have been doing loads of research on the good old internet to find out if I am alone in this or if there are others like me. Turns out there ARE others like me...hundreds of thousands of people like me. So I want to share my story to have it added to all the others. I hope newly diagnosed or even self diagnosed people out there can maybe read this and find a sliver of comfort knowing this: It isn't you, it's them. But....who is 'them'?
I grew up playing outside. Most people probably did. I lived in the suburbs and had access to some of the best hiking and camping the USA has to offer. I lived in the shadow of Mt. Tamalpias, where mountain biking was invented. I have an old newspaper clip celebrating Mother's Day. On the cover is me, as a baby with my mother and toddler brother. We are sitting in the sun in a tall grass field on Mt. Tam. After my mom and dad married when I was about age 7 we were camping several times a year. My love of the outdoors did not stop when I went away to college. In fact, I would say it increased. I got a degree and later, a Masters degree in Geology. I was camping and hiking for a living. I am pushing 40 now. I still love to hike and camp although now it is not so often because I am too sick and tired to move that much. I don't blame the outdoors for my being sick. The outdoors are still great in my book. Just the other day....no, actually it was about four years ago, but to me it was the other day, I went on a picnic/hike with my boyfriend. We had a blanket spread out on the ground. We ate all kinds of wonderful salady things, had some wine and laid down to stare at the clouds. I looked down as I stood up to leave and saw four or five ticks had decided to join us on the blanket. I shook them off.
Mt. Tamalpias, Marin
That was not the first time I was around ticks though. I was bitten by one when I was really young. I want to say 8 years old. Mom had to call people to figure out how to get the tick off because it was really lodged into my skin. In my pre-teens I spent a lot of time up at the family cabin where I would sometimes sit and watch in disgust as my aunt laboriously pulled tick after tick off of her furry dog. In my 20's I was on a week long geologic road trip through Nevada when I ripped what I thought was a knot of unwashed hair out of the back of my head. I looked down at my fingers to find I had just dislodged a tick from my scalp. The car full of men I was in came to a screaming, dusty stop on a dirt road in the middle of nowhere-desert so everyone could get out and check their bodies for the same. I was the only lucky tick transporter. The thing is, at that point, I had not been outside of the car for 8 hours. That means that tick had a full day to bore his little way into my skin. I still don't know if I ever really got him all out. I hear they can detach their heads.
All this contact with a known vector for Lyme Disease and I never paid any bother to the issue or illness. I have always trusted my doctors. I have never had a reason to distrust them. At least, I never knew that I could have a reason.
At age 10 I was having such terrible pain in my knees I finally had to go to the hospital for it. I was dismissed immediately because I am a tall girl so it was presumed to be growing pains. I am fortunate enough to have a mother who was truly in tune with her daughter because she knew in her heart that the pain I was displaying was not 'normal' pain that tall little girls go through. It took a couple years of fighting with doctors...oddly enough this fighting with doctors theme would continue my entire life on through this very day...The doctors agreed, reluctantly, to run a Rheumatoid Arthritis test. I tested positive for the RA serum. I had Juvenile Rheumatoid Arthritis. I began taking pain medications at the age of ten. At the age of 12 I was taking medications to treat Arthritis.
I'm the tall one with the knocky knees. This is one of the few times I was able to do this much walking. And yes, that WAS our troop number.
I missed out on a lot having JRA. Sometimes I used it in my favor, like when I didn't want to do P.E. in the mornings, I would say that the cold air exacerbated the pain. The coach would let me sleep on the port-a-pits meant for high jumpers to land on for the period. Most of the time, heck, even the times I was using it as an excuse, it was actually painful and excluded me from normal childhood experiences. I never learned how to be on a team. I never learned how to play sports. My nickname in High School was "Wimpy".
By High School I was taking 800mg prescription Motrin. I had tried Asprin, Naprosyn, Disalcid, Ecotrin, and other things whose endings rhymed with "sin". Motrin worked best for my pain but I had to take it constantly. This burned a hole into the lining of my young, teenage stomach. I had ulcers by the age of 16. I missed out on eating burgers or drinking cokes with friends. I couldn't order coffee at the cafe I practically lived at for my whole High School social life. I had to treat the ulcers for two years. By the time I was back on the Motrin I was 17 years old and in college.
A normal day's worth of meds for a teenager, right?
Once I was in college I was in total control of my medication. In order to keep the pain at bay I was taking 800mg Motrin every four hours when the pain was at it's worst. This dosage would last for days at a time. When I would run out, my knees would swell up and I would be left unable to walk. It was the worst kind of party foul. I had understanding friends who would help walk me home from a party I didn't even get to have a drink at. If my prescription ran out, I would buy the 200mg pills and just take four of them a pop.
Pain was not my only symptom. I suffered from terrible fevers. When I was 10 years old I had a fever of 107. I was on vacation in another country. No one knew what to do. The mercury on the thermometer was maxed out at the end of the stick. I thought I could hear my brain frying. But that was not uncommon for me. Whenever I get a fever, I get a high one.
Not too uncommon for me growing up.
Along with RA I had other "old person" ailments. I got Shingles when I was in Middle School. I got it again in college. I recall doctors being quite surprised I had contracted Shingles, an inflammation of the nerve endings, at such a young age. It was unheard of to have it twice before age 20. I like to break rules though.
Fast forward to 2008. I am 33 years old. I am the manager of a laboratory in a winery. I have a great boyfriend. I have a fantastic job that I love and am real good at. I'm making great money. I love where I live. I am a happy, happy girl. But I start getting tired. Really, really tired. I start to decline managerial meetings I am required to attend because I no longer am able to stay awake in them. I ended up in the emergency room. I just couldn't lift my own head anymore. The doctors didn't know what to do. They told me I could no longer drive for fear I might fall asleep on my way to work and sent me home with some Trazodone. The Trazodone did help. I was able to get back to work after a week or so. But things did not get better. In fact, they got worse...a lot worse.
I was still not sleeping at night and not staying awake during the day. People thought it was just stress. I have suffered from anxiety my whole life. The earliest I can recall having bad anxiety was when I was 10 years old. I was in France with my family. We were waiting for a restaurant to open. We had lunch reservations and we had arrived early. The restaurant is a super fancy, three Michelin Star, famous establishment along the L'Ille river. I started freaking out. I was overwhelmed with feelings that I needed to get out of there right away. It was a sick feeling in my stomach. I could not run away. I could see the staff walking back and forth getting ready for the lunch reservations. I knew they were laughing at me. I could see them laughing at me. I could hear them. They were laughing because we were early. What was that stupid American girl doing in that stupid striped beige dress. She is a fool standing out there waiting for lunch so early, doesn't she know when to show up for lunch reservations? I wanted to will myself out of there. It became a family joke after that. I would not want to go somewhere and we would joke "they are laughing at me". I didn't realize that is a condition. It is called Social Anxiety Disorder. I had it then and I have it now. I can't do a lot of things because of it: shopping on my own, driving to new places, ordering food in certain situations, and taking public transportation, to name a few.
Source: http://p-h-o-t-o-g-r-a-p-h-i-a-s.tumblr.com/post/30928337853
So, yes, I do suffer from stress but this problem with sleeping/staying awake was new and the anxiety was nothing new so we still could not put our finger on the source. It was in 2010 that I started to feel more pain than usual. I was finding myself in the emergency room again and again with what I thought was Meningitis. The pain in my neck was searing and unrelenting. Between bouts of pain in my shoulders and neck I noticed my Arthritis get worse. My knees were hurting, my toes, my hands, my knuckles, all ached a low, dull ache. I started seeing a Rheumatologist.
The Rheumatologist began me on some Plaquenil. The pain did not lessen. It didn't take long to add the Sulfasalizine to the regiment of pills. I was not getting better. I had planned on going to Europe for vacation in 2010 but I was in too much pain. I was concerned the pain would ruin my trip. The doctor gave me Prednisone and Vicodin. That got me through the trip quite well.
Even though I made it through my European vacation, you can still see there is pain in my eyes in a photo like this one. (ignore my mom's finger in the shot ha)
All the medications were starting to work but I started throwing up a lot. The Rheumatologist decided I was on too many medications and replaced the two Arthritis meds with Methotrexate. I then had to begin monitoring my liver weekly. My job centered on alcohol. I MADE wine for a living. There was no way around consuming alcohol for my job. The medications I was on can combine with alcohol to do serious damage to internal organs, namely the liver. Once again, I was visiting the hospital on an at least once a week basis.
The Prednisone helped but it is famous for changing the user of the drug's body. It can give you a hunchback. I did not get that, I DID get the moon face. Prednisone made me gain 40 pounds. I ate healthy, VERY healthy, but it did not matter. The drug adds water to your face and your stomach. I no longer recognized the person I saw in the mirror. I didn't like what I saw so I stopped looking. My pain was still there so to try to get myself into work every day I took more Vicodin.
By 2012 I was taking, what was in my opinion, way too much Vicodin. I felt like my symptoms were being treated with all these pills but no one was working towards a diagnosis. Towards the end of 2012 I was back in the emergency room. I went in without taking any pain medications so I could really explain how I was feeling. I was admitted to the hospital.
My week spent in the hospital was fruitless
In the hospital, for the first time in years I was finally without pain. It took 2 ml Dilaudid to finally "get on top of the pain". The doctors said I should have been passed out from the drugs but I was taking a shower. Taking a shower, for me, is a huge ordeal. I call the shower the Torture Chamber. Think about it. If you are in all over body pain, which is what had by that time been what was happening to me, standing up for several minutes at a time with your arms over your head or scraping a razor over your tender skin is a nightmare to say the least. So, I took a shower. That was the last time I recall having a pain-free shower. I should have taken ten showers. Oh well.
The view I had for over a week. I didn't mind because I was relatively pain-free for that whole time.
I spent over a week in the hospital. They ran every test under the sun. The Neurologist came in and spent hours with me. He could not find anything wrong with me neurologically. Therapists came in, I had EKG's MRI's, consultations and more. I was pretty comfortable during that week. It took 1mL Dilaudid every 4 hours to keep me pain free. But I WAS pain free. If only for a little while. My Rheumatologist came in, looked at my knuckles with his bare eyes and told me my Arthritis is fine, he has cured it and any pain I have now is not related to that. I went off the Methotrexate.
I left the hospital with Prednisone, Methadone, Dilauded and Norco pills. They told me I have Peripheral Neuropathy and gave me Gabapentin. They told me have have Fibromyalgia and gave me Cymbalta. They told me I have Chronic Pain and they signed me up with the Chronic Pain Program, Level Three. I was sent home.
Me and my walker had some adventures together.
The medicine they put me on took away my ability to drive. They did much worse than that. They took away my ability to work, to feed myself, to walk....everything. I would never go back to work after that stay in the hospital.
Ah the Chronic Pain Program. It was 11 weeks long, 4 hours a day and 2 hours away. Being unable to drive, I had to sign up with a disabled persons transportation service. "Wait", you might be saying, "I thought you said you have issues with public transportation because of your anxiety". Yes, you are right. How did I get around that? I had to go with someone. So my mom came with me. She had to donate her time to come around in the morning, I had to pay for two people to go up on the bus, she sat there in the waiting room for 4 hours EVERY day just so I could go to this class.
The main way I got around for several months...wheelchair.
I tried to blog the class on this blog but as I got further and further into the program I found less and less help from them. We did little exercises, we walked, we meditated, we talked and supported. The last day of the class we watched a video of us on the first day and the last day, doing reaches and movements that were meant to show our progress. The whole class wept when they saw that mine was the ONLY one that showed NO CHANGE. The exercises I would do in tears because the pain was so bad. Moving is very, very painful for me. It was not helping me at all. The doctors insisted I exercise because that is how you cure Fibromyalgia. It was not and did not help me. It may have made things worse.
Meanwhile, I had to go off some of the drugs they put me on. I could not live a life of using a walker to get around, having my mom feed me, my boyfriend having to clean the house and walk the dog around me as I lay on the couch day in and day out in utter agony. The pain of going off the drugs they put me on was worse than anything I could have imagined. I tried to use the therapists and doctors offered to me from the Pain Clinic but even they admitted I "fell through the cracks". I had to threaten suicide just so I could see a doctor. By then end of the class I was on 12 Norco a day. I was not better, I was WORSE.
In attempts to make a change or get a new diagnosis, I changed doctors. I did this maybe 6 times. I found a doctor I liked somewhat but then he got in a terrible accident and became unavailable. At that time I began to really flail. I had no Primary Care Physician and a LOT of needs. I spent at least every 10 days fighting, screaming, threatening and crying at the doctor's offices just to get my prescriptions filled....the prescriptions THEY gave me, THEY hooked my body on.
I finally lost my job. With my job I lost my insurance. Now what? Someone I was friends with on Facebook, the mother of the boy I was in love with in High School, actually, recommended I see a Naturopath. I didn't think much about it because I had already tried so many things including Acupuncture, Homeopathy, Massage, Juicing, Mindfulness, Guided Imagery...and so, so much more. But when I lost my insurance I had nothing, and everything, to lose. I went to see the Natropath. He is what is called a "Lyme Literate" doctor. He listened to my massive list of ailments that included everything I have mentioned so far and among many, many other things, cold sweats, heart palpitations, vertigo, confusion, and horrible, horrible tinnitus. He suspected Lyme and sent my blood to the only Lyme testing establishment in the Western US.
It was VERY costly to run the tests and you will recall I have no insurance. The results took a month to come back. I tested positive for the Western Blot Test. This was the first time in thirty years of my life that I had a diagnosis that was testable, besides the Arthritis when I was 10. It was a relief, in a way, because it is treatable but it was not the great ending to a terrible journey I was hoping for.
I found out that most doctors in the main HMO of California do not accept the testing at that lab and do not even believe there is such thing as Chronic Lyme Disease. I began a regiment of antibiotics that have been costing my just under $2000 every month. I was able to get insurance again through my boyfriend's work. I took my test results to the HMO only to be laughed at, ridiculed, belittled and denied treatment.
It is now 2014. I have insurance but I am still having to spend money out of my pocket for the antibiotic treatment. I also have to lie about it to the doctors whom I am insured with. I am still unable to work. I am still in incredible pain. I had to move away from my family and friends to be closer to the boyfriend's work in order to keep the insurance. I still needed the insurance because I find myself in the emergency room frequently still. Most recently I was in the emergency room with a kidney stone. While there they told me I have Hepatitis. They said that and then released me. I asked them before I left why they are telling me I have Hepatitis. They said that they could not find a kidney stone and some preliminary tests showed I had some elevated liver enzyme levels. That tells me that they could not figure out why I had that terrible pain (which I still think was a kidney stone that I passed the moment I arrived at the hospital as I have had them before and remember what that feels like) and they could not figure out why but they wanted me out of there so they told me Hepatitis and sent me on my way. Well, I DON'T have Hepatitis. I DIDN'T have Hepatitis. They are just blindly throwing these diagnoses at me with NO regard to my well being. It is too hard for a healthy person to have to fight for healthcare like this but for a very sick person, this is almost too much to take.
Since that visit, I met with a new doctor closer to where I now live. She has decided there is NO WAY I have Lyme and I must have Fibromyalgia. She prescribed me Norco and Cymbalta and has sent me to the local Chronic Pain Clinic. It is almost comical. Really, it is. If it wasn't so terrible for me to live every single minute of every single day of my life, I would be laughing.
But I am not laughing. No one I know is laughing, except maybe my doctors. Or perhaps the CDC. It is the CDC that made the silly guidelines that "ties the hands" of my HMO to a certain testing sequence, a sequence that RARELY, if EVER, shows a positive result on the first screening test. See, the way the CDC has the tests go, doctors in the US must first run a screening test which happens to be the test that when Lyme was discovered in the 1970's showed the most true postitives and least false negatives and positives. It just happens to be that the strain of Lyme that fit this bill is a GERMAN strain found in....you guessed it, GERMANY. So how the hell am I supposed to test positive for that? And after someone tests positive for that test, only THEN will they run the Western Blot Test, the test I show positive on.
I could go on explaining how the people in the CDC who created the testing guidelines all had a strong financial and personal interest in Lyme not being well diagnosed or contained. I could mention how Lyme Disease is named after the town of Lyme in Connecticut which is 9 miles in a B-line from Plum Island where they had scientists studying bio-warfare tests on ticks, of all animals. I won't though. I won't go into how there could be all kinds of reasons the government would like to sweep Lyme under the carpet, keep it quietly infecting the public, secretly studying us patients. I won't go into that because we are getting into conspiracy theories and I don't want to do that. What I want is to be properly tested, diagnosed, treated, cared for and CURED for a condition that I have had for 30 years. I just want to be better. I would like to be acknowledged as being sick. I have been told it is "all in my head" so many times, it could break the strongest of spirits.
So, that is where I am right now. I am seeing my new Rheumatologist tomorrow and the Chronic Pain Clinic folks next week. I am still on antibiotics and will continue those for the next year or so until I am cured.
If you would like to help contribute to my final treatment so I can hopefully live a normal life for the first time in my life please go to this link: http://www.gofundme.com/xxfyz45w
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