Final Treatment For Lyme Disease

It has been 18 months since I was diagnosed with Lyme Disease. I have spent over $60,000 on the treatment. All of which is not covered with insurance. I have borrowed from friends and family. I have taken away the life of my husband who has to work constantly so I can lie in bed being in pain, waiting for the antibiotics to work, SOMETHING has to change. I have spent my entire life's savings, I have cashed in my retirement....at age 37. Now I am 40 and have reached the extent of all loans and extentions I can get. But there is a light at the end of this horrible tunnel. I have been told by my Lyme Doctor that I have beaten Lyme. I am cured. But...I am still in terrible pain because my nerves have been so extensively damaged from the disease that I am stuck here in perpetual pain unless there is a way to treat my damaged nerves. All drug treatments have failed me and believe me, I have tried them all.

There is a way to restore nerve damage. It is called Intravenous Immunoglobulin (IVIG). It is a very expensive process but at the end, it is my best chance of healing my ruined nerves. It is a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. My doctor says I will need four installments of this treatment. One a month for four months. Each treatment costs $8000. This means I need to come up with another $32,000 if I want to get better. 



I have suffered my entire life. I have not known what it is like to live pain free for 30 years of my 40 year life. I am being offered a chance to end this pain and it is dangling in front of me like a carrot on a stick that is just out of reach. I want to work. I want to make wine again and make people laugh and be a good wife to my husband. I want to be able to walk my dog and make dinner, see friends and my family again.  It is sucha lonely existence when the only humans you interact with are doctors who laugh at you and berate you.

This is why I am reaching out to you this way. I am out of options and left the way I am, I will waste away in this bed with the finish line in sight and no way to reach it. Any tiny amount of help will inch me closer to the treatment and I appreciate every penny. Thank you for listening to my plea. If you are interested, here is more of my story:

I was first bitten by a tick 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. I was then bitten again in my 20's when 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 backof my head. I looked down at my fingers to find I had just dislodged a tick from my scalp. 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.

At age 10 I was having such terrible pain in my knees I finally had to go to the hospital for it. I tested positive for the RA serum. I had Juvenile Rheumatoid Arthritis. I began taking pain medications at the age of 10. At the age of 12 I was taking medications to treat Arthritis.

I missed out on a lot having JRA. Most of the time it was quite 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 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.

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. This did not stop me from persuing my life interest of the Natural Sciences. I graduated with a Batcheler's then Master's degree in Science for Geology.

Pain was not my only symptom. I suffered from terrible fevers. When I was 10 years old I had a fever of 107. But that was not uncommon for me. Whenever I get a fever, I get a high one.

Along with fevers I have always suffered from insomnia. I had to go to therapist after therapist all trying to find out why this poor little girl was screaming in her sleep all night and sleeping in class all day. Must be depression. Must be drugs. Mustbe.

I had other "old person" ailments. I got Shingles when I was in my tweens. 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.

ALL these warning signs and my insurance company, doctors and hospitals seemed to think nothing was REALLY wrong with me.



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 really 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. I recall as early as age 10 being terrified of people in public places. I didn't know it was not a normal feeling. 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.

So despite suffering from the ususal stress, the doctors didn't find anything they could put their finger on so I went undiagnosed. 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 again.

The Rheumatologist beganme on some Plaquenil then added Sulfasalizine. I was not getting better. The doctor gave me Prednisone and Vicodin. That got me through a few more months of work. Little did I know how much havoc Prednisone wreaks on a body infected with Lyme Disease and how quickly a body becomes immune to opiates.

All the medications were starting to work but I started throwingup 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.

I ate healthy, VERY healthy, but it did not matter as the Prednisone began to ruin my body. 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 only able to work if I took 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.

In the hospital, for the first time in years I was finally without pain for short periods of time. 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, there 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 I 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.



I spent over a week in the hospital. They ran several tests. 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 in a wheelchair. A wheelchair I would not get out of for months.

The medicine they put me on took away my ability to drive, work, to feed myself, to walk....everything. I would never go back to work after that stay in the hospital. I had lost my beloved job.

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 $50/day for two people to go the hour ride north and back on the bus, she sat there in the waiting room for 4 hours EVERY day for 11 weeks just so I could go to this class.

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. They also suggested I get mental therapy because this pain is probably just PTSD from asexual trauma I had when I was 7. I had taken therapy directly after the incident and for many years but I was willing to try anything the doctors suggested so I went. Of course, the type of therapy suggested was not covered by my insurance so I began spending $600/month on somatic disorder therapy.

Meanwhile, I had to go off some of the drugs they put me on. I could not live a life of using a wheelchair or 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...and my true thoughts were not too far from suicide. 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. Every day was a tear-filled struggle with doctors. I lost all my dignity, self worth and respect. They broke me down. Still, I never was given a diagnosis. I did EVERYTHING asked of me and more. I was a pariah at the hospital. No one wanted to take me on because I was such a "problem".

I had googled my huge, three page typed list of symptoms because when I brought the same list in to see a new doctor she asked me to only choose the top three....out of 80!!... that she would be willing to look at. I googled the symptoms and Lyme Disease came up. I requested to be tested for Lyme. My doctors laughed at me but agreed. The Infectious Disease doctor also laughed at me and said this was an exercise in futility because there really is no such thing. And if I had Lyme, I would be so infected that I would be just crawling with bugs. The test came back negative and I trusted the doctors when they said never bother with silly Lyme questions again.

When I lost 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 reliable Lyme testing establishment in the Western US.

It was VERY costly to run the tests and you will recall I have no insurance. I dipped into what was left of my savings to pay for the $1200 in testing. 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 primary 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 me just under $2000 every month. I was able to get insurance again by marrying my boyfriend...not the most romantic reason to get married but I was literally dying from a treatable disease and couldn't afford to get treatment. I took my test results to the HMO only to be laughed at, ridiculed, belittled and denied treatment. So much help my insurance did me!

I had to move away from my family and friends to be closer to the boyfriend's work in order to keep the insurance. Plus I could no longer afford to pay for groceries or rent. I still needed the insurance because I find myself in the emergency room frequently. 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. I ended up allergic to the Cymbalta. I still have to take the Norco which I alternate with Tramadol in a futile attempt to keep my body from being too dependent on one or the other. Despite some blood pressure meds and the pain meds, I have gone off of all the terrible drugs I have been dutifully taking despite the havoc they have wreaked on my body. Nothing has worked. I have this one chance left at living a normal life. I hope I can reach my goal. 

Thank you again for listening.