Friday, October 29, 2010

Putting Up a Front--Ashley van Tol

I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.

Like any kid who grew up in the woods, I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either. I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck,” was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.

I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self-diagnosis of spider bite.

It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from any symptoms until I was 21. In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.
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In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my innards. “Is this what jet lag was?” I wondered.

It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me an inhaler for asthma. Ah, it didn’t help.

Life continued on with me in a constant state of panic. What was wrong with me? My boyfriend’s advice--“Harden up Ash.” How very Australian of him.

On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.

In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!

My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.

I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.

At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.

Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.

My self diagnosis--Candida.

I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test. I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.

At this point I had added depression and fibromyalgia-type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.

Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.

I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable. In 2006 we went to El Salvador for two months. Maybe I got a new parasite or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected; I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.

I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.

In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through every day. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.

I nearly lost my husband because with no where else to find blame, I laid the finger on him. For some reason he stubbornly stood by me. I was lost.

That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink. Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!

In the fall I reluctantly went to see another doctor. It was getting too serious to ignore. She tested me for everything under the sun. I was surprised there was any blood left in me after all that! There appeared to be a handful of minor things wrong with me, including Lyme disease.

I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me. I stopped seeing her after two months.

It was four months later when I went to se a chiropractor that I learned about Lyme disease.

He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of the so called “diagnoses” I had received?

The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.

I had Lyme alright, and co-infections and viruses.

Would I change it if I could? No. Like many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.

Do I want to be healthy? Yes.

Emotionally I am in a much better place now than I have been in years. Physically I struggle, but there is a light at the end of the tunnel.

Ashley van Tol, California

Tuesday, October 26, 2010

Fighting for My Life--Brandi

My story begins in the summer of 2000. I had just moved to Austin Texas after graduating from the University of North Texas. I starting working as a nanny for a wonderful family. I loved Austin because it was so different than Dallas and Denton, so much to do outside, so much nature. My apartments were even settled in a woody area that was backed up against the Greenbelt (a stretch of wooded area with trails and creeks). I was also involved with a local church and I remember going on a youth camping trip (in Austin).

It was either at this camping trip or somewhere around my neighborhood that I got bit by a tick. (I never saw a tick and didn't have the classic Bull's Eye type of rash.) I woke up with a strange rash over my chest, back, and face. I went to the local emergency care place, and the doctor said he didn't know what it was. One of the nurses looked at me and said, "Honey, I think you have Lyme Disease." But instead of testing and treating me for it, they sent me on my way with a recommendation to see a dermatologist.

I had no idea what Lyme disease was, so I went ahead and got an appointment. The dermatologist had no idea what my rash was either, and wanted to take a sample of my skin for testing. Meanwhile, I emailed my old dermatologist and asked her what her thoughts were. She said that Lyme rashes are not usually on the face, and it was probably a benign rash. She even had a fancy name for it. Well, I trusted her judgment, since I didn't have any other symptoms and my rash was fading. I eventually went on with my life. I never would have thought that those decisions would haunt me ten years later, and I would be fighting for my life.
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Fast forward through a college degree, getting married, and having three beautiful girls. I was basically healthy besides some strange episodes of vertigo. (The bad kind where the room spins and spins). I had every test under the sun, and saw six different specialists, but was diagnosed with Benign Positional Vertigo. I had a really bad spell of it after my second child, but eventually recovered. I also had a miscarriage during this time. But it was after my third child that all hell broke loose.

It was exactly three weeks after giving birth. We had a three year old, a two year old, and now a newborn. I went to bed and noticed my finger start twitching. It was just really annoying, although I didn't think much of it. After a couple of days, the twitching spread to my toes. After a week, the twitching spread to all over my body. I was starting to freak out and do some research online.

I kept getting information for Parkinson's, MS, and ALS. We went to my regular MD who thought it was a vitamin deficiency. Negative. I also had extreme weakness on my left side of my body, and I couldn't do any fine motor skills with my hands. She referred me to a neurologist. I had some nerve tests done and some MRI's of the neck, spine, and brain. She was ruling out MS and ALS, or any neck injury. I was convinced I was dying of either MS or ALS even though all my test came back negative. I went to a second neurologist that specialized in Multiple Sclerosis. I had every blood test under the sun. I even had a Lyme test done, and although the first part, the ELISA, was positive, I didn't have enough bands on the Western Blot to be considered positive. I was told that it was negative.

I went to a third neurologist (highly recommended), and he tested me for HIV, Lyme, and did a Lupus panel. My Lyme test had the same results, positive on the ELISA yet not enough bands on the western blot. My ANA test was positive (showing that my immune system was fighting something) but the Lupus screening was negative. He sent me to a Rheumatologist, who retested me for everything. He had no explanation for my symptoms and when I asked him about Lyme Disease, he said, "It's NOT Lyme Disease." When I told him about my rash ten years ago, he said, "There is NO such thing as Chronic Lyme Disease." I knew that was untrue because I had heard of a girl that went on seven years of antibiotics because of her Lyme Disease. He did insist I start some antidepressants. I refused. I knew I wasn't depressed. I was scared because nobody could figure out what was wrong with me. Needless to say, I stopped going to those doctors.

I got online and started researching Chronic Lyme Disease and how standard test are unreliable. I also learned about the controversy surrounding this disease, yet I still didn't know how hard the battle would get. My MD ordered the blood test and sent it to a special lab in California.

I found online a Natural Clinic that specialized in Lyme Disease. I decided while we were waiting for my blood test results, that I would try it out. My husband was in full support and equally desperate to find me some relief. At the clinic, I was given some herbal remedies. One of the remedies had a natural antibiotic called Cat's Claw, or Samento. I didn't know what a herx reaction was, but I was about to experience my first frightening, horrific herx. (Herx - worsening of symptoms due to bacteria die-off). For the next two months, my symptoms multiplied by a hundred and blew me into a whole new realm of pain. I started having severe tremors, heart palpitations, anxiety attacks, panic attacks, seizures. It felt like someone was electrocuting me nonstop. I would lie in bed at night, wishing for death...begging God to take me. It was bad....really bad. My personality also changed, I had my first "Lyme rages." I put my family and friends through a lot of hurt during those times.

I did finally get my blood test back and I was positive for Lyme, Babesia, and Ehrlichia. I found a Lyme Literate Doctor and started treatment. I know there is no cure for Chronic Lyme Disease, but I still want to give it a fighting chance. I have come a long way from where I was, and I'm able to function as a wife and mother again. I do realize that I might have to be on antibiotics for the rest of my life. Hopefully, my story can help gain awareness to this horrible, devastating disease so that people can get better testing, get better treatment, and maybe we can find a cure someday. I pray that for everyone, especially my family.

Brandi, Texas

Friday, October 22, 2010

Tired of Complaining--Melisa Hodges-Young

My name is Melisa; I am a daughter, a sister, a granddaughter, a niece, a cousin, an aunt, a wife, a mother and a friend. I could be someone that you know.

People tell me all the time I "look good" but they aren't there in the morning shower when my day is greeted with the handful of hair that comes out while I shampoo - and that's only the shower; not the drying and brushing or the loss during the day. I know so many other people are losing or have lost so much more than this and every day I tell myself, "Melisa, it could be so much worse." It doesn't stop the pain of seeing the change though. The other external change I have is with my veins and thinning skin. Many of the symptoms are internal though; you don't see them and I get tired of complaining.

This started 8 years ago for me. We are in Southern Ontario and I was out pheasant and turkey hunting with my husband. Although we wore bug spray, each time we returned home and took off our outer clothing, we would find moving ticks on each other - sometimes as many as 4 each. We knew nothing about Lyme disease or what ticks and other biting insects could carry. In May 2002 my husband noticed a rash on my lower back after I'd showered one morning - it was about 2-3 inches long by about 1-2 inches high (it gradually spread out over the next months). I do not recall it being itchy or really bothersome - just thought I should go see the Dr. I started feeling very unwell and then had some very painful pelvic pain. I didn't associate it with the rash but, we had been trying to get pregnant and that was my first thought.
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When my family Dr. saw me he thought maybe I had a "tubal" pregnancy and sent me for an ultrasound. I was a bit shaken and forgot to show him the rash. I was pregnant - I was also very ill - with a myriad of symptoms. I made another appointment and he finally saw me at the beginning of July. Upon seeing the rash he said he'd never seen anything like it before and sent me to a Dermatologist who finally saw me in October. The Dermatologist made the same remark, did a biopsy of the rash and sent a report back to my Dr. stating if my symptoms persisted "Lyme serology" should be considered - he gave me a cortisone cream to put on it. NEVER USE A STEROIDAL PRODUCT IF LYME IS SUSPECTED - it drives the bacteria deeper into the tissue. My symptoms persisted and I was finally seen by an Infectious Disease specialist in Jan 2003 - 3 wks before I had the baby. This very short visit concluded with the specialist saying, "Melisa, even if we did the proper testing and find it to be Lyme disease, I can't treat you because you're pregnant...go have the baby and see how you feel afterwards..."

My blood tests appeared "within normal ranges." The only questionables included a high MCH; Low results in Hemoglobin, Hemtocrit, Red Blood Cell, CK; A very high ESR of 83 (high in range was 20); and the ultrasound showing the enlarged lymph node in the left armpit.

That's where the ball in my game of health got dropped.

I kept a diary of symptoms at that time. My symptoms included - in no particular order: Heart palpitations and chest pain (palpitations almost daily). Tightness in my chest and throat with mild to moderate activity. Tiredness, muscle weakness (daily). Shortness of breath (daily). Nausea, and vomiting (nausea - daily, vomiting sometimes stopped by Diclectin or gravol). Night sweats (from June to end of July). Fainting and dizziness (first fainting at 10 weeks of pregnancy - dizziness daily, even while sitting.) Memory loss. Headaches and head pressure (frequently) left side. Numbness on left side of face, head and neck (frequently). Pain and a "hot" feeling at the ends of different fingers and toes (comes and goes daily). Pain and a "hot" feeling in different areas of my face (almost daily). Small dark lines at the ends of my fingernails (gradually grew out). Inability to sleep (nightly). Rash on lower back. Kidney stones, problems, pain in my back in kidney area. Swollen face, hands, legs and feet. Pain in my back under shoulder blades (frequently). Heartburn (daily). Acid reflux (daily). Visual disturbances and temporary loss of vision (sometimes prism-like and areas of vision go gray - almost daily). Pain in left armpit (daily). Swollen lymph nodes in left armpit. Pain and numbness down left arm and hand (daily). Pain and numbness down right arm and hand (but less frequently). Pain and numbness down legs (frequently). Joint pains. Pain and stiffness in fingers - sometimes I could not close my left hand. Face pain on left and eventually upper jaw...I had a lot of dental work on that side and "extra bone growth" (?) as described by Dentist after I had our baby in 2003.

I had our baby. She was a very difficult baby; she never slept and consumed my life. My enlarged lymph nodes under my left arm were looked at via ultrasound and eventually went down. My headaches on the left persisted; I had a CT which looked "normal." My shortness of breath persisted, heart palpitations, feeling faint after bending or squatting and my memory issues. Nobody explained they could be related to Lyme disease.

I think I'm mostly upset because now I know they could have looked at the placenta for evidence of Lyme spirochetes. I have 2 children now - who most likely have been infected. They have had their own experiences and problems and one day I will feel up to writing about it as well. I've had glimmers of the disease all through the years with ebbs and flows of the symptoms.....Among other symptoms, the left sided pelvic pain and loose hip joint forced me to take an early leave of absence again during my second pregnancy and then my bladder fell after the birth of my second child - I was 34 yrs old.

Last spring I started feeling unwell and asked a friend who works as a representative for a well known Vitamin Company if she could get me a good colon cleanse. I started taking it and it made me feel pretty bad, so I stopped. I then had an incident when I went with my husband's band to Texas in the spring for a few days. After being outside in the sun by a pool for a few hours (I drank water all afternoon) we got ready to go out and watch his band play. After 2 vodka drinks I became very ill and I later passed out after my husband got me back to the hotel. I was so sick and was convinced the bartender had doubled or tripled the shots. After learning more about the disease I now know the infection was brewing again.

In July I woke one morning and went into the kitchen to make my daughter some oatmeal. I felt nauseous. I walked over to put it in the microwave and the last thing I remember is the microwave door and the next thing I remember is my husband standing over me asking why I wasn't answering him. I was laying with my eyes open and my husband didn't realize I wasn't conscious. (In 2002 I had fainted a few times - I felt the "faint coming"....this was different, I had no idea. I literally blacked out.) My family took me over to the hospital where they ran ECG, blood and urine tests. They were concerned about my heart because I had chest pain all over my left side and a sharp pain over my left eye. Everything looked ok and they sent me home after 8 hours. It wasn't until I got up out of the hospital bed that I realized how "off-balanced" I felt. That was my last day of work. Over the next month I went through a period of not being able to walk properly, talk properly - the hardest part for me was that I knew it and couldn't properly communicate it; my family thought I may have had a stroke; my family Dr. thought perhaps it was the "onset of MS, Lupus, Raynauds or some weird autoimmune disease." The Doctors ran test after test, which showed little things but nothing too alarming to them.

I was experiencing chest pain, heart palpitations, headaches, pressure up my neck and head (for the first month it was immense pressure - unlike anything I've had before), face and jaw pain on the left, a disconnect feeling between my body and brain, numbness and tingling in various areas of my body, very sharp shooting pains -some like a knife going in me, my joints were starting to ache again(they did in 2002), my fingers were showing enlarged joints (in 2002 my hands were so bad I could barely move them - especially my left one) major cognitive issues, nausea, muscle fatigue, hair loss, feeling cold all the time, wild mood swings, vision problems - difficulty focusing and double vision, eye "floaters," my veins seemed to be more prominent - I wonder now if it's thinning of my skin but also I seem to have varicose veins in places - I was never a "veiny" person! My palms and soles of my feet ache - as if I have broken blood vessels, I get charlie horses all the time - muscle cramps, sun sensitivity, ear pain, hearing loss and ringing in my ears. The oddest symptom I have surfaced at the worst point with the neck and head pressure, during the night I rolled on my pillow and heard, what I describe as "fast shots of fluid" at the base of my skull - I used to work in the printing industry on hydraulic printing presses - it sounds like a line under pressure; releasing...I heard that same noise a few times during that night and the next day the pressure seemed a bit less intense. Ever since then, periodically I hear that same noise. My right pinky finger has been completely numb since August, I get muscle pain and fatigue, shortness of breath simply from walking upstairs from my basement - as if I've run miles, my arms ache just trying to hold a sheet up to fold (thanks to a friend who has Lyme as well, I know now to lay it on the bed - but, I'm 38 yrs old - my brain says this is just ridiculous!!) eye pressure, jaw and face pain, gum pain and insomnia........I'm sure I'm forgetting some things.

Yes, some days are worse than others, I start to stutter when I'm tired or upset and can have difficulty speaking for long periods - my mouth, tongue get tired and I have trouble forming words. I have trouble recalling words I know that I know; my vocabulary is just plain rotten at times! I have difficulty putting my thoughts down clearly, relaying my thoughts clearly, and I get muscle spasms which include little ones that happen all over my body and that a lot of people are familiar with - twitches I guess but, I can get them so bad that for example, my whole side will move, it's hilarious, like I have a baby inside again!

Blood tests showed only Low Urea, Potassium - High MCH and a very high CH50-Hemolytic Complement at 371 (range is stated as 100-300)

From the tests we know my thyroid is heterogeneous with hypoechoic nodules throughout the gland (hypoechoic nodules can become malignant) my ANTI-TPO and ANTI-TG were 180 and 183 (high in ranges are 35 and 40), I have white matter spots on the left side of my brain, I have (they ran two tests and each radiologist described it differently - I am still waiting to have it re-read) either a "cystic mass" OR "tissue thickening" at the 3rd thoracic vertebrae, I have deteriorating disks at C5-6 and C6-7 with some bulging, I had a thallium heart test and that showed some heart perfusion defects which the radiologist correlated to Lyme. Currently, my Lyme Literate MD (LLMD) is looking into vasculitis.

Last August I had a friend remind me about 2002-2003 and she gave me the website for the Canadian Lyme disease foundation - http://www.canlyme.com/. It wasn't until Sept. that I was out of my "stupor" enough to read the information and contact them for Dr's info. I insisted that my family Dr. refer me to the LLMD canlyme had recommended and that specialist finally saw me in November.

This Dr is amazing; he is brilliant, he is kind, compassionate and above all else an excellent LISTENER. By far one of the best Drs I have come across in this long road. He is confident, based on my medical histroy, clinical evidence and the fact that nothing I'm experiencing can be attributed to any other disease by any other specialist that I have "3rd stage Lyme disease."

I will back up here a moment, because although I was having test upon test I wasn't receiving any help. The best my family Dr. could do was prescribe Lorazepam and told my husband to take me home and "try to relax, go to dinner or something" - I took one pill - still have the bottle.

The beginning of September my Mom took me to a Natural practitioner who had a Biomeridian machine. She tested me and said my "systems" were overloaded and shutting the doors; my adrenals, kidneys, liver, lymphatic, colon... everything. Her testing also showed Borrelia, Rocky Mountain SF and a few other bacteria and viruses. I later had her test my children and both showed the Borrelia and RMSF. She began treating me to open up the systems and flush the toxins out. I don't believe I would be walking or talking properly today if I hadn't seen her. I think I would have continued the downward spiral. I also had an Aunt who said I should start taking as much Vitamin C as I could tolerate and some good friends bought me a huge tub of powdered Vit C. My Mom bought me a huge container of CoQ10 which she and another Aunt insisted on as well as magnesium and B12. My Mom, my family and friends have been a huge support. All of these things have helped immensely I am sure.

The LLMD started me initially on Doxycycline - 200mg in am and 200 mg in pm. This past January he changed it to 250 mg of Azithromycin AM/PM and 200mg of Plaquenil Am/PM (that is almost 1000mg a day), I am taking all of the vitamins I mentioned earlier along with a multi and a really good probiotic that I take before bed so it has time to work. I also take milk thistle and flax seed oil (capsules) and iron. I'm very fortunate to have a mother, family and friends who believe in natural things as they have been a huge support and help to me. And I am a firm believer that God put things on this earth for us on purpose so that we could remain healthy. I take epsom salts baths, I have even had foot detox baths. I also recently started some of the protocols that Stephen Buhner has in his book.

I'm getting brain freeze now, you'll have to forgive me. I don't type well - I find it not only hard to get my fingers to work but, to get my thoughts out clearly. I re-read everything and find it takes hours to do what used to take minutes.

Three days ago I actually thought I was beginning to feel a bit better, less "puffy"/inflamed...then that same evening I got hit really hard with the shooting stabbing pains...they are so bad at times they make me cry in an instant. I now realize I'm going to have "waves" of wellness and that each day I feel less of the symptoms, is a day to take advantage of and do the now "special things" with my family. These days tire me tremendously but are so worth it!

Financially, I do have medical coverage through work for the antibiotics but I have to pay up front and then wait for the 80% back from Insurance Company (I am currently on an unpaid sick leave from work). The medication alone is almost $300.00 - then factor in the probiotics, multivitamins and everything else...you can imagine what I'm spending!! I have submitted a claim for disability but, the Insurance Company hasn't given me a decision yet. I'm trying to be patient but, I can't afford the medication this month.

**update - I had a friend talk some sense into me and I charged it to the credit card...yet again! Do I feed my children? Pay the mortgage? Buy my medication so that I can get better and get on with my life? We have always provided for our family with two people making an income. In January, we had to remortgage our home with a consolidation.

We Ontarians have a Dr. in Mississauga, Ontario who is currently being investigated by the Ontario College of Physicians and Surgeons for his treatment of Lyme disease patients (although they have not received one complaint from a patient!)

Thank you for taking the interest in and the time to read my story, which was a painstaking task although very fulfilling....my goal from all of this is to help stop the misdiagnosis and mistreatment of ailing people and to help educate people so that they can help themselves if ever the situation should arise.

Melisa Hodges-Young, Canada

Tuesday, October 19, 2010

Maybe I Am Crazy--Eric Rutulante

Seven months ago was my 36th birthday. Plans for dinner with a friend, followed by a softball game. I was looking forward to a nice relaxing birthday. Before dinner I suddenly got a bloody nose, something I hadn’t had in a while. I could feel my sinuses and ears hurting. I told my friend I was sure I’d wake up with a sinus infection the next morning. I also said that something just didn’t feel right in my body.

As predicted the next morning I woke up with a real monster of a sinus infection. I called my doctor’s office (this was the first in a series of communication breakdowns with the doctor’s office staff and my doctor) and was told to go to Urgent Care because there were no openings. I made my way there and was diagnosed with my second or third sinus infection of the allergy season, which had only just begun. I spent the next two days in bed, crawling out on the third day for my birthday celebration at the city’s annual Tulip Fest. I was very weak, and had to sit through most of it, but it was nice to be out and with friends. I ended up throwing up before we left. I figured it was the antibiotics, and so much physical exertion after being sick.

On Monday I went back to work, and slowly recovered from the sinus infection while finishing my antibiotics. They had given me a z-pack for the infection. What I didn’t know was that starting the antibiotic was probably creating a herx reaction, long before I would ever find out what a herx reaction was. Zithromax is one of the antibiotics used to fight Lyme disease, so the medicine probably began to kill the Lyme bacteria. (When the bacteria die, they release toxins into the body, causing symptoms to worsen.) At the end of the five days, I didn’t feel all that great, but figured with time I would.
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I woke up Friday morning, three days after finishing the antibiotic for the sinus infection, groggy and trying to force myself out of bed. It was eight days since my birthday. I put on my glasses as I always do as soon as I wake up. I’m almost legally blind without glasses or contacts, so until I put them on I can’t even tell what time it is. Shortly after putting my glasses on I thought one of the lenses must have fallen out because I couldn’t see anything out of my right eye. Everything was blurry. I took my glasses off and saw the lens was in there. It was my eye that wasn’t working.

I got ready and headed to work. As the morning progressed, my vision slowly got a little better. As it did, I started getting really bad headaches around my eye and pulsing pain in the side of my head. My co-workers talked me into calling my doctor. I was told there were no appointments, but to go to Urgent Care, and they would have any imaging equipment they’d need to check me out. Off to Urgent Care I went, again. I was thoroughly examined, and nothing was found to be wrong. They didn’t take any x-rays, or do an MRI though, just a physical exam. They said it must be something with the eye, and set up an appointment for me to see an eye surgeon an hour later.

I spent a couple hours with the eye surgeon, having all kinds of tests done. He called me in and said that my vision had improved to 20/40 since the blurriness I woke up with, but he could find nothing wrong with the eye. Everything was healthy. He asked about dizziness, numbness or tingling sensations I may have experienced. I told him I often felt a vibrating in my right leg, but I always thought it was because of my cell phone usually being in the side pocket. He said he didn’t want to worry me, but the symptoms seemed a lot like MS, and that I should follow up with my doctor first thing Monday morning.

Home I went, to think over the weekend about the possibility of MS. On Monday morning I called my doctor’s office, and was told there were no available appointments until the next day. I was annoyed, but they said they checked with my doctor, and she said to come in on Tuesday. (This was the next breakdown in communication with the office.) I went in for my appointment and the doctor had gotten all the reports from Urgent Care. Other than not having any balance, she couldn’t find anything wrong. She scheduled a full physical exam for the next week, and referred me to a neurosurgeon. (Weeks later she would question why I went to a neurosurgeon instead of a neurologist at first. She didn’t think she would have said that.)

Luckily I got an appointment for two days later with the PA for one of the neurosurgeons. When I explained the eye thing, and some of the other symptoms she said “Why, it sounds like Lyme disease.” She scheduled a bunch of tests, MRI’s and MRA’s of the brain and neck, x-rays etc., but she never ordered a Lyme test. She was under the impression that if what I had was caused by Lyme disease, it would be apparent with the brain scan, much like lesions for MS. I waited two weeks for insurance approval to have the tests done. At this point it had been three weeks since I had lost vision in my right eye, and I was getting very frustrated with the medical and insurance systems while I also seemed to be experiencing a worsening of my symptoms, as well as more and more neurological type problems.

I finally got the approval and was scheduled for my tests and given a follow up appointment another week later. The neurosurgeon called me in, and spent less than two minutes with me. She said there was nothing wrong, other than some possible disk problems in the neck, so the only pain I should feel would be occasional in my upper arms. She scheduled me for physical therapy and steroid injections into my neck. I had spent the last year receiving five steroid injections into my back, each time getting sicker and sicker after the infection. I made the appointment, but didn’t feel comfortable with her diagnosis or with having more steroid injections. I asked her why my legs hurt so much, and she put her hand up to my face and said, “I will not discuss anything below your neck, because there is nothing wrong with you,” and she left the room. I was in shock. I had waited a month for some kind of answer, expecting something horrible like MS, but hoping it would be something easy like Lyme. We were even taking bets on Facebook the night before about whether it would be MS or Lyme.

I went to my car and called my Mom. I said, “Maybe I am crazy, and it’s all in my head.” At that point I was beginning to doubt myself, because I had never come across a circumstance with the medical system where they could not, or would not help me. I called my primary doctor back, almost in tears, and told her the results. She said to me, “You’re not a complainer, you don’t come in unless something is really wrong, but I just don’t know what it is,” and scheduled me an appointment to come back in on Monday. She asked me if I wanted her to do a Lyme test, since the PA at neurosurgery had originally said that, and I said sure. She told me she was going on vacation, but if anything came back someone would call me. Four days later, on June 11th, she called, ecstatic with the news that I had tested positive for Lyme disease; the test came back with bands on the western blot test indicating what she interpreted as an acute Lyme infection. She prescribed doxycycline, told me to take it for three weeks and I’d start to feel better in a couple of days.

I was thrilled. Finally, an answer. This is an excerpt of what I wrote that day in my personal blog after receiving the diagnosis, so glad to have an answer and to know I’d be back to normal very soon.

“So Lyme Disease it is…three weeks and six days after waking up with a problem I finally have an answer. I can’t tell you what a relief it is. I had such a burst of adrenaline when the Dr. called. Before that I had been lying in bed so exhausted and in so much pain I couldn’t move, yet unable to sleep. I was thinking how can I possibly function today. An answer was wonderful. My Dr. said she’s never been so excited to tell someone they’re sick and her co-workers couldn’t believe how happy she was to tell me I had Lyme disease.

Yesterday I went to the Center for Natural Healing in Kingston…Afterwards I fell asleep twice while doing something at my Mom’s. I finally slept for about an hour. It took another hour to clear the fog in my head to drive home. I couldn’t move, I couldn’t make any decisions. I had plans for doing some shopping and enjoying my pass day, but all I could think about was getting home to bed. I cried on the Thruway on the way home, feeling so overwhelmed with frustration at the past three weeks of not getting any answers. I was angry at the doctors who told me there was nothing wrong. Even angrier at the doctors who didn’t do their job to even try to figure out what was wrong. Angry at the misdiagnoses and the time wasted in bureaucratic BS.

I was afraid I was going to have to go out on leave at work, unable to do work when I was there, and it being harder and harder to get to work. Angry at the almost $1000 I’ve spent already to find answers.

But this morning all of that was taken off my shoulders as the Dr. said “you should start to feel better in a few days.” As the day progressed all the things I worried I wouldn’t be able to do this summer suddenly became reality and it thrilled me. No more lying in bed on beautiful days, listening to people enjoying the sunshine outside, while I sat inside in pain. Hope started to return. The idea of feeling normal again filled me with adrenaline. To not have to put so much effort into just cooking dinner, cleaning the dishes, let alone do laundry or keep my apartment at least semi clean. I worried I was going to have to ask for help to do the simplest of things. I felt bad when friends with full time jobs and kids were offering to do my grocery shopping for me. How could I possibly be that sick? And how could I continue to feel sicker and sicker each day? And then today I knew an end was in sight, and there is hope that Eric will be Eric again. And life will begin to return to normal again…”

I cringe now when I read those words, so many months later. I really had no idea what my body was in for, or what I was about to face. If I had any clue at all I never would have been so relieved with a diagnosis of Lyme disease.

This is how it all began, my journey with Lyme disease. The actual journey began many years before that, but the knowledge of the journey was not known to me until this all transpired. It is just the tip of the iceberg in a story full of sickness, anger, hope and understanding that has brought me to this point today, where I am sharing my story with others in hopes their awareness may help another person avoid the effects of this horrible disease.

--Eric Rutulante, New York

Friday, October 15, 2010

Waltz of the Regiments--Lindsay Culbert

Thirty-four bottles in all line the top shelf of the desk where I am typing right now. Omnicef, Levaquin, Septra, Minocine, Flagyl, Rifabutin, Adderall, Paxil, Neurontin. Orange relics of my disease, plastered with red and yellow warning labels. Do not crush. Do not take on an empty stomach. Take with a glass of water. May cause dizziness. It is an endless, regimented waltz of pills, like those dance marathons in the 1930s where contestants were competing for a decent meal and some cash to live on but instead had to be carried off on stretchers from exhaustion.

My case of chronic Lyme Disease is not really as serious compared to other people's. I at least have some hope of relief from the monthly cycles of poison ingested into my body, others are not so fortunate.
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The next question that usually follows when people find out I have Lyme: “Well how long have you been sick?”

I force a smile and answer politely, but sighing inwardly I know the series of questions which will follow, simply because no one knows about Lyme Disease. I have had Lyme for thirteen years, but I started treatment three years ago. I am twenty-three this year.

My body was going downhill so quickly, chances are I would not have lived to see my 30th birthday. Why didn’t I realize my steady demise? Because Lyme patients start thinking that the current state of misery is normal. Most of the time, the change is so gradual. Pain becomes a routine, and the fatigue as steady as five o’clock traffic.

Inevitably to follow are the two questions I hate the most: “What exactly is Lyme Disease?” And the loathsome “What are the symptoms?”

Even now I am staring at the screen, my fingers gently brushing my keys, hoping maybe the word processor will make words appear on its own, so I don’t have to come up with a response. Don’t get me wrong, I am not offended by people asking, I only hate these questions because the answers aren’t simple, and they usually only generate more questions.

BUT people need to know.

Living with Lyme Disease is like driving in the densest fog imaginable. Fog so thick that it might as well be nighttime because the headlights aren’t even penetrating the mist. Oh, by the way, you feel like you are wearing lead bracelets on your wrists all the way up your arms with matching lead ankle-weights to the thigh and one of those fancy lead vests that dental hygienists put on you before x-raying your mouth. Those might be bearable if you weren’t wearing a lead skull cap that’s causing the nerves in your shoulders and neck to pinch.

Let’s just concentrate on the driving in this thick fog. Gosh, you’ve driven this road a hundred times, but you still can’t remember how to get to… “Wait where am I going again? Was I going to the store? Or did I just come back from the store? Wait, where are the groceries?”

Living in this type of fog all the time is so frustrating. All the energy you can muster is devoted to surviving because in real life, this fog is in the house, it’s in the cubicle at work and in the frozen food section of the grocery store. It can never be escaped because it is a state of reality. Forget writing or thinking philosophically, getting out of the bed is your new creativity.

Doctors have it partly right when they tell Lyme patients it is all in our heads… HA! I just want to reply with, “You’re darn tootin’ it’s in my head… NOW GET IT OUT!”

I don’t have very many memories of my adolescent years because I was so sick (maybe that’s a blessing). Don’t misunderstand, I do have memories, but they are vague and I don’t remember specifics of the situations. It’s great for bad memories— but it really sucks that I can’t remember anything about being Anne in my community theatre’s production of Anne of Green Gables or of my surprise sixteenth birthday party. I have snapshots in my head, that’s it though.

My emotional state through my teen and early college years bounced around between complete numbness, pins and needles depression, and volatile fury (affectionately known in the Lyme community as “Lyme rage”). Lyme caused me to gain 35 pounds in 6 months when I was in seventh grade, which put me further into depression. I played three sports a year—basketball, soccer, swimming—I was incredibly involved in the theatre, took voice lessons, was a lifeguard, was active in my church: most girls my age would be thin and fit.

The truth is I’m still insecure about my size, but I also realize that I’m not the only woman that struggles. I look back now at all of my “fat” pictures and think “Oh my gosh, I look sick in these pictures.”

Lyme gets into your brain and causes an unreal emotional sensitivity. I was a raw nerve that experienced every negative word without a buffer, like sandpaper on a burn.

I don’t even want to begin to describe the rage because I have done so many things in rage that I regret, I mostly just hate who rage makes me become.

Say you’re driving that car again, but this time it’s on fire. You don’t care though—You floor it. Lyme rage is reckless, barbaric, and has no mercy for the damage that it causes. I have said words to my mother and my brother that I can’t take back, words that I literally would give a pound of flesh to be able hit the delete button.

This sad story has taken a turn for the better, though I could continue on for a number of pages on the terrible things that have happened to me. I got to a point where I couldn’t read. My school had to order a special program for me to get my textbooks on audio, like they do for blind and dyslexic people. Not being able to read is a death sentence for a writer. But here I am weaving this story of hope by the grace of my Creator (the most ingenious author of all), the wisdom of a brilliant doctor, and disgusting poisons that kill the disease in me.

Wednesday morning two weeks ago, in front of the entire student body, one of my teachers, Dr. DeCiantis, called me up on stage to receive an award for achievement in editorial excellence. She was my advisor for our school’s literary magazine, which I was the editor-in-chief of last year. In front of everyone, she listed nearly ten major achievements I had accomplished, including starting a writer’s conference at our school and developing a training program for the future editors of the magazine. I was the first editor to ever receive this award. My professor placed a wooden plaque with a red engraved face into my hands. I actually jumped up and down and squealed in front of a thousand set of eyes. A laugh bubbled up from the crowd, but then a thousand sets of hands clamored. They could not possibly know the entire magnitude of my accomplishment.

When I read this story to my roommates, one of them asked me, “Do you wish you didn’t have Lyme? Like, do you see other people and think, they have it so much better because they aren’t sick?”

I replied with, “No, because my Lyme disease doesn’t define me.”

The more I write, the more I realize with great conflict comes great resolution. The more pain and heartache, the more blissful the reward. I wouldn’t trade being sick for anything. I have had the opportunity to empathize with those who are truly afflicted. Being able to say “I know” and really understand is a gift, and being able to say “There is hope for you” is a blessed responsibility.

Through this sickness, I have become part of the Lyme community, where our common struggle has woven a deep since of sympathy and an unbreakable cherishing of life. No, I wouldn’t trade that for anything.

-- Lindsay Culbert, South Carolina

Tuesday, October 12, 2010

Imagine Being Sick for Years and Years--Donna Falcone

Imagine being sick for years and years, like having the flu … almost but not quite. Imagine having widespread muscle pain, and pain that moves from joint to joint. Imagine routinely forgetting your own phone number, and having to look at an envelope you received every time someone asked you to verify your address. Imagine sudden explosive fits of rage and uncontrollable bouts of crying, neither of which are typical for your temperament. Imagine that you cannot remember your wedding or your best friend from college or whether or not a relative you loved has died or not. Then imagine that your doctor tells you that you there is nothing wrong. You must be depressed. You must not be getting enough sleep. After a few years things change in him. Your doctor says you have fibromyalgia, and you are happy to finally have a reason for all of your suffering… but you soon realize that from that moment on everything that goes awry is attributed to the mysterious fibromyalgia.

Now imagine that you finally accept this diagnosis called fibromyalgia. They convince you that it won’t progress… that it is a cluster of symptoms caused by over active nerves. But you do get worse… you lose your hearing, you lose your career, your pain increases and decreases randomly. Imagine crushing fatigue, stabbing nerve pain, and the feeling of glass stuck in the soles of your feet. Imagine your forearm shaking uncontrollably. You think you must be crazy. You think you must be dying. You think you just need more sleep. You do everything you can… you eat right, you exercise, you avoid chemicals and over use of medications. But you keep feeling worse. Doctors test you for thyroid, RA, and a host of other diseases, but your labs are always normal. It must be the fibromyalgia. Knuckles swell and hurt and they say you have osteoarthritis, but suddenly the swelling and pain goes away from your hands… seems to move from knee to knee, elbow to elbow, without reason… seems to invade your hip on the right but by the time you get to the doctor it is now on the left, or in your foot. You cannot bear to be touched or tickled, and some days you avoid hugs. Everything hurts. Imagine you are talking with someone who is looking at you cockeyed, as if they were waiting for something, and you realize that YOU must have been talking because it’s now your turn again. Imagine wondering if you are officially insane. It must be the fibromyalgia.
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Then one day you finally land in a therapist’s office because your life has spun out of control and she says “I think you have Lyme Disease” and you say “my doctor ruled that out” but she is so certain, because she also has Lyme Disease so she can see it in others. You study and you ask questions and you go to lectures and for the first time, in your entire adult life, you hear someone describe you. You are not sure if you have Lyme, but you are convinced it is worthy of investigation. But, in your search to learn about the disease you also learn that there is a big fight going on in the medical world. One side treats Lyme patients with long term antibiotics and cures them, or at least gets them into remission. Their patients leave wheelchairs behind as pain diminishes. Their patients regain their careers as energy and cognitive abilities return. Their patients are found to leave their psychiatric diagnoses in the past as they undergo healing treatment. The OTHER side insists that this is not a disease at all, and if after 28 days of Doxycycline the patient is not well then it is too late and the patient has Post Lyme Syndrome. What would YOU do?

If you are like me you would have gone to your doctor and asked him to consider Lyme Disease even though he has already tested your blood for it, and you would suggest that the blood test is unreliable, and you would ask him to help you. But instead of helping you he puts you through 2 hours of hell trying to convince you this is wrong, and in which you must defend your NEED to know what is wrong with you, but he actually says “patients who pursue this diagnosis only want an explanation for what is wrong with them." Yes, really. You can’t believe your ears to hear him say that. His feet are firmly planted on the "OTHER" side. You can’t believe your ears when you hear your own voice explaining to the doctor that "of course you want to know what’s wrong, and when the body hurts it is trying to tell us something… so of course I want to know what it is trying to tell me." You wonder “shouldn’t a doctor KNOW that?” Finally, he gives you a referral so that you will leave.

After months of trying you finally find a doctor who will send your blood to a lab that specializes in Lyme Disease, even though the blood tests are still not very reliable. But you know this is the best chance of getting anyone to believe you are sick. Then, one day you meet this new doctor in his office for the long awaited lab results and there, in black and white, is a CDC positive result for Lyme. He gives you a prescription for 28 days of Doxy and tells you only to return if you’re still sick and you know, right then and there, that this doctor does not understand Lyme. You know you have 28 days to find a doctor who does.

That is what happened to me. I found out that I have these things called spirochetes living inside of my muscles, my brain stem, my organs, my nerve sheath, my brain:
They had been growing in number for 30 years inside of me at the time of my diagnosis. From the moment of the appearance of bulls eye rashes on my abdomen and other outbreaks on my foot and ankle, strange fatigue and crawling skin, these tiny single-celled organisms called spirochetes have been burrowing into every square inch of me. They rested for a while in remission, and were then reactivated by another tick bite in 1998, and have been actively damaging my body and mind ever since.

Why am I telling you this story? Because there is a huge disregarded population of people just like me, and we need tools to help us cope with the images of these THINGS inside of us (along with whatever other diseases – called coinfections- hitched a ride into our bloodstreams), and with the images of knowing we have these coinfections that came from the mouse or squirrel in the field that the tick bit before he bit a deer and before he bit us. We need help coping with the constant self doubt of our diagnosis, and the constant fluctuation of symptoms. We need help coping with the incongruity that we are faced with when the treatment makes us much sicker if it’s working, so we learn to embrace the Herxheimer reaction as the only proof that we are on the right path. We need help coping with the swirling controversy that keeps us from finding doctors who will treat us and insurance companies who will pay for long term antibiotics. We have lost organ functions, careers, and have spent countless amounts of money and driven/flown thousands of miles seeking treatment. We have been told we have lost our minds, and many of us have worsened because of misdiagnosis which kept us from the treatment we really needed: Fibromyalgia, MS, ALS, Lupus, RA, ADD, ADHD, OCD, to name a few. This disease is called the great imitator because it looks like so many other things. Misdiagnosis is a very dangerous thing. Many of us have died.

I travel 260 miles round trip every 4 weeks to see a doctor in another state because he is the closest one to me who will treat my illness. I have made a lot of progress, but I have recently had a setback due to an allergy. After 10 days off of my treatment I was filled with returning nerve and joint pain, mental confusion, and despair. I have become reacquainted with my cane, and I try to not need anything upstairs at home until it’s time to go to bed. Stairs only make everything worse. Although I am not happy with the setback, I am back on treatment now and hoping to get back to where I was. The thing is, this was a good experience for me and for my doctors because it validated the path we are on with my treatment. There isn’t a blood test that tells us really. All we have is how I feel. It isn’t only the disease process that is exhausting and draining our energy. It is the stress and tension created by the fight between two sides. It is the desperate search for a doctor who will treat and then finding the money to pay for it (most Lyme doctors don’t accept insurance). It is the countless miles traveled to doctors who will help us. It is the willingness to try unheard of remedies out of desperation and then worrying about whether or not we should have. It is the worrying about our children, and wondering if they, too, have Lyme because we didn’t know we had Lyme when we had them. THEN, on top of that, it is all of the other challenges of chronic illness that relate to family, finances, and quality of life.

I have used several guided imagery and affirmation CDs with great results, and every time I do I think “wouldn’t it be great if there was a guided imagery to help Lymies visualize the die off and elimination of spirochetes, and to build inner strength for the fight of our lives… and create a sense of protection and safety amid the political firestorm that swirls around our heads?” Something to help us remember who we are… that we are not merely a walking, talking transport for teeny tiny buglike germs (this is a particularly difficult image to shake… the image of corkscrew-shaped invaders inside). Something to help us feel confident in our body’s ability to heal itself. Something to help ease the layer of pain that comes from holding so much tension in the body. Something to help us sleep, as many of us don’t sleep very well.

I wish there was a CD with guided imagery and affirmations especially for people with Lyme Disease. I feel certain it would be well received by the Lyme community. Yes, there IS a Lyme community. All we have is each other in this struggle because we have had the misfortune of contracting a disease that the typical doctor does not see because their governing board says it doesn’t exist. You will never meet a group of people more supportive and willing to help each other with this perplexing and devastating illness. Because Lyme is "the great imitator" we are like many, but unique in that those who we are like are unlike us. If we tried to listen to every guided imagery CD that touched on an aspect of our illness we wouldn't have time for anything else.

We, along with our Lyme doctors, are the pioneers. We really need some help here. Something to help us remember that we are "held in the hands of God, and we are perfectly, utterly safe" (Belleruth Naparstek).

-- Donna Falcone, New York

Friday, October 8, 2010

Fighting With Insurance--Dana Rolander

I started to have additional unusual problems about 2.5 years ago, neurological problems, fingers and wrists twitching. My joints (hips) also started to ache more, but for me that was nothing that raised an eyebrow. I have dealt with chronic pain since I was 16 years old. I developed osteoarthritis at a very young age, and have since had several hip replacements as well as revision surgeries, so my hips always hurt. But this was different.

I went to my primary care doctor about the twitching, and he sent me to a reputable Neuro doctor. I met with the neuro guy and went over all my symptoms, particularly the wrist and finger twitching. I spent a lot of time at work back spacing because my fingers would fire as I was typing and I was hitting the wrong key all day. I also described terrible memory problems, headaches in the morning, as well as severe migraines on and off. I also told him the terrible fatigue was unbearable. I literally had to drag myself out of bed every day.

The Neuro doctor wanted me to have a sleep study as soon as possible. I had that done, and it revealed obstructive sleep apnea (OSA). I went for a consultation and was told that the memory issues, twitching and fatigue, and everything else were related to OSA, and I would be as good as new once I started CPAP. So I was off to be fitted for a mask, and would be back for a follow up in three months.

I complied with the CPAP therapy 100% and when I went to my follow up, I was pretty agitated with the Neuro doctor because I didn’t feel better, at all! Not even a little bit more energy. I guess I intimidated him, because he also wanted to put me on Prozac to help with my rage. I explained that if I felt a tad better, I wouldn’t be raging out right now, reminding him that he assured me that I would be feeling much better in the three month period. He sent me back for another sleep study to make sure of what? I didn’t have a clue; they adjusted my pressure 2 degrees and sent me on my way. I was completely devastated with the way I was just shrugged off, and was asked to make a follow up in another three months.

I did some through research on the internet trying to locate a doctor that specialized in Chronic Fatigue and Fibromyalgia because I was told by previous doctors that I had both. The Neuro guy that I had just seen laughed at the Fibromyalgia diagnosis, telling me that doctors will call it Fibro when they can’t find anything wrong with a patient. I located a very good doctor and waited the three and half months to see him with great anticipation. My time finally arrived and after discussing my symptoms and history for about two hours, the doctor brought me into his office and explained that he thought I had Lyme disease. I can remember to this day, my response was “what kind of a pill do I take for that?” Boy was I wrong. The doctor wanted to send blood work to a special lab in California called Igenex. I agreed. The results came back and revealed a positive on bands 31kda and 41. Band 31 is so specific for chronic long term Lyme that it was the band that was originally used for the failed Lyme vaccine.

Things went down hill from this point on, because I was so naive about what was involved in treating Lyme. I was also positive for the co-infection Babesiosis, which required a completely different group of antibiotics. I immediately started an oral antibiotic protocol along with numerous other supplements. My system was completely out of whack, there wasn’t one day that I ever woke up from sleep feeling refreshed, and I felt like a zombie that never slept. I was getting adequate hours of sleep, with none of the restorative benefit. My LLMD (lyme-literate medical doctor) prescribed numerous sleep promoting agents to try and achieve a restorative sleep. This process continued for over a year. One med. would leave me hung over feeling more tired and drugged; another would work for about two hours, and then I would be up the rest of the night. Some of the sleep agents that I took were the following: Risperdol, Klonopin, Melatonin, Lunesta, Flexeril, Zanaflex, Neurontin, Lyrica, Ambien, Seroquel, Trazodone, and I’m sure more that I can’t remember.

This period of time was my darkest days; just imagine waking up day in and day out without feeling like you’ve slept. I was going crazy, I don’t say this lightly, but the only thing that kept me in this world was the thought of my wonderful wife and five great supportive children! About six weeks after trying my last sleep med. with no noticeable benefit, I had an appointment with my LLMD. I think he realized that this appointment was different, that it was critical, that it was my last attempt to ask for anything that would help me feel restored, refreshed and a little like a human being. I had also been on Provigil for about two years. Provigil promotes wakefulness. Provigil worked great for about five months, then it lost its effectiveness to a certain degree, but I still continued to take it. It was better than nothing. I also took several prescription grade supplements to produce some energy to try and make it through my day. Often I would leave work wondering if I was going to stay awake long enough to drive the 32 miles home.

My LLMD took me into his office and told me that he was prescribing a powerful medication that he thought would definitely provide some benefit. The drug was called Xyrem. There was only one pharmacy in the country that was allowed to distribute it. Xyrem is also known as Sodium Oxybate. This is one of the popular date rape drugs of previous years. The patient takes it twice a night about 3 – 4 hours apart. I was initially very worried about something so strong, but was determined to try something to feel better, plus I had total confidence in my LLMD, so I went through the authorization process for approval.

This medication proved to be the answer to my prayers, as well as the prayers of everyone that knew me! I was literally brought back from the dead. It improved the quality of my life like nothing else had. I had less hip pain, I had more energy, and I was feeling more like myself than I had in 2.5 years. It appeared that I was on my way back!

My improved quality of life would be short lived; it seems that I caught the eye of the ever powerful insurance company. They stopped covering this prescription after five months, sighting the fact that the FDA has only approved this medication for Narcolepsy, and EDS caused by Narcolepsy. I was not diagnosed with Narcolepsy, but I did have several verifiable sleep disorders including EDS, non-restorative sleep disorder, Fibromyalgia and Chronic Fatigue, as well as OSA. It seems that it didn’t matter if I fell asleep driving killing myself or others because of EDS, but if I were diagnosed with Narcolepsy, I would be allowed to get the medication that had helped me so much.

It is interesting to point out that Xyrem is in its final approval stages with the FDA for patients with Fibromyalgia, but that didn’t help me now. Then there is the argument about allowing a medication for off label use. This happens every single day, it’s just that my off label medication costs the insurance company about $ 1.800.00 per month. I went through two different appeal processes, one with the insurance company, which surprisingly enough, I lost, as well as one more with the Maryland State Ins. Administration. I was very hopeful about this appeal, because my LLMD had provided years worth of my treatment records, as well as the LLMD’s records and notes regarding the indisputable benefit of me using this medication. I was wrong again; the bottom line has nothing to do with the patient, and has everything to do with the people in the position of power, black and white decisions. I do not have Narcolepsy, so I do not get the one medication that has helped me in my fight against Lyme disease, end of story.

I am eternally grateful to my extended family for rallying to my side and splitting the cost of this expensive medication so that I can continue to benefit from this miraculous drug. I hope and pray that the FDA recognizes the benefit of this medication and approves it for the treatment of Fibromyalgia, Chronic Fatigue as well as for people with Chronic sleep disorders brought on by Lyme disease.

I have been back on Xyrem for more than a month now, and I am able to function at work better, and feel more empowered to fight this horrible disease. I am continuing with my antibiotic supplement protocol, and pray that at some point in my life, I will beat this disease! When someone asks me, what is Lyme disease, I kindly reply, how much time do you have?

-- Dana Rolander, Virginia

Tuesday, October 5, 2010

I Don't See My Friends Anymore--Caitlin Tiszai

In our last post we heard from Jennifer Tiszai. Today we hear her 12-year-old daughter's Lyme story.
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One and a half years ago I got Lyme disease without even knowing it. I was a very nice, and energetic 5th grader who was new at school. I’ve moved 9 times in my life and have never been to the same school for two years until I moved to Plymouth, Indiana.

I was so happy… until December. I started feeling so weak and tired all the time I had to go to the doctor almost every other week. Finally I got so sick I had to drop out of the fifth grade and had to be home-schooled for the rest of the year. The doctor thought I had mono and that’s when I got my first blood draw. I went to the doctor more and more times because I still wasn’t feeling better, it even felt like I was feeling worse. But more doctor visits also equaled having more blood drawn. One time I had so much blood drawn I almost fainted which has never happened in my entire life (I am not a fainter) and on top of that I almost threw up. Yuck!

Finally a test came back that said I was positive for Lyme disease. I was on so many medications and it felt like I didn’t help, but when the next school year came around I thought that I would give school another try. It felt like I was cured when I started the sixth grade. I even tried out for volley ball and got in and I loved it. But as I started it got tiring and hard, but I tried my best to stay in there.

But eventually we found out that my mother had Lyme disease too. It was even harder and we got so sick that we had to go out to California and stay with my grandparents for 4 months from November to February. But at least it was always warm and we went swimming every week.

I can barely go outside anymore. I don’t see my friends anymore. We’ve had to move and that’s been hard. It affects my activities and what I can eat. I had to quit my first job picking strawberries because I was too weak to keep working. It scares me thinking about the future and wondering how long I’m going to be sick. With my mom being sick too, sometimes I feel like I’m on my own.

I still have to take my medication and I am being home-schooled again, but at least it is for the best. And that is my story for Lyme disease. I know sometimes it feels like no one knows how you feel but no matter what God will always be with you because he loves you and created you for a purpose in life. It will be a challenge to get through this but nothing is impossible when you have God at your side.

-- Caitlyn E. Tiszai, Michigan

Friday, October 1, 2010

Rabbits Can Carry Lyme-Infected Ticks--Jennifer Tiszai

[My hearty thanks to Jennifer for her volunteer work to create a custom template for Lyme-Over The Edge. -- Brandilyn]

Lyme is my constant companion. It never leaves me. It’s closer than any family member. It permeates my every waking moment and disturbs my sleep. Every decision I make, every plan has to factor in Lyme. There are days I think it’s going to kill me; there are days I wish it would.

I started having severe migraines in May of 2009. I have a history of migraines so this wasn’t too unusual, but they had been under control. I started feeling exhausted, like I had the flu I couldn’t shake. Then I started having heart palpitations and passing out if I stood too quickly. Finally in July I saw my doctor. “Something just isn’t right,” I told her.

She ran CT scans and an echocardiogram. Nothing particularly strange showed up. I had some blood work from a life insurance application that showed elevated levels indicating I was fighting some sort of an infection but nothing else stood out like a flashing red light. We were at a standstill.

I was working part time at our church as the web and communications person. I started missing work due to the debilitating migraines then tried to make up the work at home. I was sleeping up to 20 hours a day some days. I passed out twice at work. My boss wasn’t happy with me and was making noise to let me know.

At the same time my daughter had been seeing the doctor for over a year for undiagnosed lethargy and pain. She had dropped out of school in February and I was homeschooling her. We saw the same family doctor who finally decided to run every test in the book on her. She came back positive for Lyme. I told her to run the test on me. I was also positive for Lyme.

We had discussed Lyme in the past for my daughter because her symptoms fit, but we lived in town, didn’t go camping, and weren’t in an area known for being high in Lyme. So it seemed a long shot and we dismissed it. After we got diagnosed I did some research and discovered that our area in Indiana was having a spike in Lyme-infected ticks, and that the animals most likely to carry these infected ticks were actually rabbits, not deer. A case actually made the news of a boy who got Lyme, was given antibiotics, and now was cured.

We had a colony of baby rabbits under our back porch. Right where our black Lab liked to lay to get out of the sun. We had treated our dogs with anti-tick and flea medicine, but clearly they’d brought in an infected tick.

The doctor started us on Doxycycline, the standard treatment, saying that a month for my daughter and two weeks for me should be sufficient to wipe it out. She pulled out her CDC treatment book and showed me.

Needless to say it didn’t. My daughter had probably been infected for over a year. Me, at least six months if not longer. We don’t remember my daughter being bitten and neither of us developed the legendary bull’s eye rash. I had been bitten by a tick two years previously. The head had gotten stuck in my foot, and I had gone to the doctor to have it removed. She cleaned it and said it looked fine. No antibiotics. Was that the tick that gave me Lyme? Had it lain dormant for a year and a half? Or was it another tick?

I got a Herx reaction so bad I couldn’t get out of bed and was fired from my job. The funny thing about Lyme is that as you fight it, it fights back. You know a treatment is working when you get sicker. How’s that for irony?

The kids and I put everything in storage and went to California to stay with my parents for the winter. I was over 40 with no job, living with my folks, and so sick I couldn’t get out of bed most days of the week.

The Lyme was in my brain. I had the terrible pain at the back of my neck and swelling in my brain. I couldn’t concentrate or remember anything. It felt like my brain was composed of potholes. I could remember parts of things but then there would be this hole where I couldn’t remember anything. I wondered if this is what it felt like when someone started getting Alzheimer’s.

At one point the migraines became so intense that I kept my head packed in ice. Then I started vomiting uncontrollably for two days. I could keep nothing down and got severely dehydrated. I passed out in the bathroom. I couldn’t walk, so my father half-carried, half-dragged me to his truck and to the emergency room.

At the ER I tried to explain that I had Lyme and I needed to be rehydrated and given some pain medicine. Preferably not a narcotic which would make me vomit more. I got the run around. “Well you’ve been on Doxy so you can’t have Lyme. You must be having a stroke.” Because of the Lyme and my weakness from having nothing to eat, I had poor control of my arms and legs, and couldn’t see or talk well. I didn’t know what day or date it was. I had a CT scan and they wanted to do a lumbar puncture. I’d had one before and I refused this one. I wasn’t going through all that pain just for them to dismiss me. Eight hours later I was rehydrated and the pain in my head dulled. Of course I had no insurance so I also left with a $6,000 bill.

After a couple of weeks I tried to figure out what my future was going to look like. I was living with my folks, me and two kids in one small bedroom. But my mom was retired and my dad had been out of work for over a year. California is an expensive place to live so I knew I couldn’t make it there on my own and I didn’t know how much longer my folks could support us. I couldn’t read, it hurt too much. I had made a living as a graphic and web designer, and a writer. Now I couldn’t do any of those things. And I didn’t know if I’d ever be able to again. There is nothing so terrifying as not being able to take care of your own children.

Fortunately I found a clinic in California that only charged $60 for a doctor’s visit for uninsured patients and they had a doctor on staff who knew something about Lyme and put me on a three-month course of Doxycycline. After the Herx reaction again, I started improving to about 60%. I also started reading Cure Unknown by Pamela Weintraub and realized what a battle I had on my hands for me and my daughter. And I had no resources to fight it.

As I started reading Cure Unknown (recommended reading for anyone involved in the Lyme wars) I got so angry at Big Pharma and the insurance companies playing with people’s lives because of money. Of essentially tying the hands of doctors who want to do good medicine but can’t because they don’t have the proper information and because insurance companies won’t cover doctors who don’t play by their rules.

I started researching natural and homeopathic solutions to Lyme. I knew I couldn’t afford the IV antibiotics I needed to fight the Lyme in my brain. My daughter started taking grapefruit seed extract. The pediatrician at the low-cost clinic didn’t know anything about Lyme and didn’t want to do anything about it. I didn’t have the resources to go doctor shopping. So we started with the grapefruit seed extract. She got a Herx reaction, which I was actually happy about because it meant the grapefruit seed extract was fighting the Lyme. And the Lyme was fighting back. We also started taking the supplements Lyme expert Dr. Burrascano mentioned on his website, a few at a time.

As I got more strength I was able to be on the computer a little at a time, trying to find information about how to treat Lyme. Unfortunately there’s a lot of mixed information out there. How did I know that a touted treatment really worked or was it just someone’s way to make a fast buck? I looked for recurring recommendations by people who didn’t have anything to sell, and for things that seemed like they wouldn’t be toxic. I prayed for wisdom. We also decided to eat organic as much as possible, particularly with meats and dairy products. My thinking was that my body was so taxed with the toxins produced by the Lyme it didn’t need any extra chemicals.

At this point I have more good days than bad days, which I am thankful for. But I can’t work full time. I still spend 1-2 days a week confined to my bed. I still have a daughter sick with Lyme. I still have debilitating migraines. I can’t believe how physically weak I am. I used to be a runner and work out with weights. Now I can barely do stairs. But I am extremely grateful for my good days. Yesterday was my last day on Doxy. I’m terrified of what will happen. The few times I’ve tried I’ve regressed badly. But I don’t know if the doctor will give me another scrip. I hate feeling like my future is in the hands of someone who might not believe my disease is real.

Every day is a battle and the battlefield is our bodies. The thing about Lyme is that you have to be your own advocate at the time you least are able to. You have to fight the disease and the medical establishment. You have to remember to take multiple pills at different times during the day when you can barely remember your own name. You have to fight depression and people who wonder why you’re not well yet since you’ve been on antibiotics forever. You have to deal with the loss of friends who are tired of seeing you sick and wonder why you’re well one day and sick the next. They get tired of helping you and drop out of your life. You get tired of asking for help from people who don’t want to give it. You become isolated and alone which reinforces the depression.

It’s hard not to dwell on the “what ifs.” What if I’d insisted on a Lyme test when my daughter was first sick? What if I knew rabbits carried Lyme-infected ticks? What if I’d been more diligent about checking for ticks? What if I’d gotten antibiotics with that very first tick bite? Those are the times I rely on my faith and my trust in God’s plan for my life. I don’t understand any of it so I have to trust that He does. I don’t know how people fight Lyme without faith.

As I speak to people about Lyme I am amazed how many people, even living in the Midwest, are cavalier about ticks and tick bites. And how many know very little about Lyme, or think that it’s easily treated. I’ve recommended many times that people get a Lyme test for unusual symptoms that don’t go away. That they get antibiotics every time they think they’ve been bitten. Because I don’t want anyone to go through what my daughter and I have if it can be prevented.

Jennifer Tiszai, Michigan

[In Tuesday's post we'll hear from Jennifer's daughter, Caitlan, about her own fight with Lyme.]