Friday, April 29, 2011

Patient #26--Cynthia Ruchti

Doctor Number Seven in the series rolled his vinyl-covered chrome stool so his back rested against the opposite wall of the small exam room. He sighed, slapped his clipboard (they used clipboards in those days) onto his lap and said, “Tell me about your life.”

My life? He’d only heard a smattering of the symptoms that had crept over me—a new one each month for the past year. Heart palpitations that took my breath away. Muscle aches that medicines and massage couldn’t touch. Incessant joint pain. Muscle spasms that flitted from one body part to another with lightning speed. A headache that lasted five months without letting up for even five minutes. Brown-outs (like a black-out, but not fully developed). Vision problems. Low-grade fever. Facial numbness that migrated to my chest and arms and eventually to the soles of my feet.

“My life?”

“Yes. How’s life?”

Did he, like others, assume my wide array of seemingly unrelated symptoms meant I put the hypo- in hypochondriac? Did he assume my real problem was depression? Or a plea for attention? Or a reaction to stress?

Tuesday, April 26, 2011

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.
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, April 19, 2011

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.

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 lying 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 - 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 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 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

Friday, April 15, 2011

Waltz of the Regiments--Lindsay Culburt

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.
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

Monday, April 11, 2011

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.
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, April 8, 2011

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.

Tuesday, April 5, 2011

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.

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, April 1, 2011

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.