Posts Tagged ‘Faces of Lyme’

I Know Why the Caged Bird Sings…

// July 12th, 2010 // 2 Comments » // Family of Lyme, Fundraising for Lymies, Guest Authors

Shared with us by, Helen Raser.
Written by, Katie Johnston

Meet my beautiful friend Birdie…
One day soon we’ll take on the world again. Keep your head up, sister.

“I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
I know why the caged bird sings.”

(Please stay with me here and read this all the way through)

As you all know, I’m currently planning an event called “F U Lyme” at The Other Bar this Thursday, to help raise money for a lady by the name of Elizabeth Chalker. I had the privilege of hearing Elizabeth Chalker’s story from my dear friend and advisor, Helen Raser. What you need to know about Elizabeth is this: She’s 39 years old, was once an accomplished (PhD) Forensic and Sports Psychologist and athlete. Her passion was helping at risk youth and their families, often without payment. Currently, Elizabeth is dying from Late Stage Lyme Disease & Co-Infecions, as well as Lyme-induced Endometriosis, which have virtually taken over her body. Multiple organs and systems are shutting down. Due to medical ignorance surrounding Lyme disease, she has been suffering for over 20 years, debilitated the last 7 years. Without appropriate treatment she will die an agonizing death.

Elizabeth’s body is wracked with pain 24 hours a day – uncontrollable muscle twitches – daily migraines – seizures – convulsions – constant nausea and dizziness – extreme light and sound sensitivity – excruciating bone and organ pain – inability to sleep more than ½ hour at a time – inability to stand long without blacking out – And with virtually no family to help, she lives alone in a cold, dark apartment, in constant agony. Elizabeth’s only chance for the life saving treatment she desperately needs is in Washington State . But treatment will take years and hundreds of thousands of dollars.

In spite of this indescribable torture, Elizabeth has the most amazingly strong spirit and huge heart. She will help anyone who reaches out to her, though no one can help her. Her dream is to be able to dedicate her life to helping others and make a difference in the world. Helping Elizabeth would be like helping thousands. The world needs Elizabeth Chalker.

Although we’re throwing this bash in an attempt to raise money for Elizabeth, it’s also about raising awareness of Lyme. What you really need to know about it, is this: Lyme disease affects MILLIONS around the world, in every state, and on every continent. It is the fastest growing infectious disease, growing at a rate of over 39%, and is 10 times more prevalent than HIV / AIDS. It mimics, causes or contributes to more than 300 other disease and conditions and is frequently misdiagnosed as MS, Lupus, Parkinsons, ALS, Alzeimers, Arthritis, Rheumatoid Arthrits, Fibromyalgia, Chronic Fatigue Syndrome, Psychiatric Disorders, even Cancer, and much more. It can affect every single organ and system in the body, thus causing neurological, cardiac, gastrointestinal, vision, hearing, psychiatric, and many other issues. Yet people are misdiagnosed every day and left to suffer mercilessly and even die.

The State Attorney General of Connecticut launched an investigation of the IDSA Lyme Panel and determined that their guidelines for diagnosing and treating lyme are FLAWED and that panel members had conflicts of interest (IE: ties to insurance companies, pharmaceutical companies, patents, etc). They were ordered to form a new panel and to re-do the guidelines. In the meantime, doctors are operating under those flawed guidelines, denying that Chronic or Late Stage Lyme even exist and that Lyme Disease is rare and easy to treat. And doctors who are willing to become educated and administer proper treatment risk losing their licenses and other penalties. Because of politics, greed and egos, millions of lives are being destroyed. One extremely important life in particular is being destroyed…

Now, onto why this event is so personal for me and back to the caged bird reference… Seven years ago, I met a boy that would change my life, as do most significant people one comes across in this great journey. John became my best friend and soon after, much more than that. He introduced me to a world I never knew existed, whilst also introducing me to one of the most incredible friends I’ll ever have. Life only affords you so many people in life who will actually reciprocate your love for them. Through John, I found an entire family willing to do just that, but more than that, I found my Birdie, the inspiration to all of this madness, to F U Lyme, to the reasons sometimes I find it hard to be empathetic to small problems, to the reasons I only allow myself to be down for only a bit, to the reasons I see the world sometimes with TWO sets of eyes, and to the reason I feel things with TWO hearts… because even though you’re not always able to be with me, Terd, I assure you that you are with me more than you’ll ever know. And while your physical body has not allowed you to experience the world like a 23 year old should, you’ve been with me in spirit on so many occasions.

Cue music, world. Meet Teri Danielle Raser. She’s the most beautiful friend I’ve ever had; has the voice of an angel, or of the Jenny Lewises in the world; the innocent laughter of a kid’s first reaction to the tea cup ride at Disney; a heart the size of Texas, scratch that, more like that of the size of all of Africa; dance moves better than Ashlee Simpson (inside joke); and a wit about her that even Rainn Wilson couldn’t contest on his Twitter page. Aside from all of these amazing attributes, the greatest thing about Teri is that she is exactly that friend every friend wants in life, the one who treats you like you want to be treated, the one that makes you a better person just by being in her presence. This is who she’s always been to me… ever since I met her on that sweet summer day 5 years ago.

Since then, Bird & I have shared clothes, gossip, deepest-darkest secrets, belly-aching laughter, beds, concerts – live & in the car, a room for a summer, and the best of times… but most recently, we’ve shared some of the worst. In February of 2007, Teri was struck with something we spent day in and day out chasing, trying to figure out, to understand, only to be misdiagnosed for months on end until finally determining that she, my very best friend, was suffering from Lyme Disease which has since proven to be the biggest battle she, her family, and her friends have had to fight yet. (Read more of her story from her brother’s eyes here: &

For the last 3.5 years, Bird has endured treatments after treatment, IV therapy, medication post medication post medication, and days and nights on end spent lying in bed, unable some days to even walk down the stairs for family dinner. Her symptoms match closely to those of Elizabeth’s listed above. Too physically sick to stay on her own, Teri was forced to leave Miami mid-sophomore year, at the height of her college career, dominating UM’s best blog, working for a couture fashion designer, all the while owning the Miami social scene. And now her life consists of TV shows on DVR, a very cute and large mini-Shetland look-alike pup Ziggy & his big but smaller brother Hurley, adorable cousins Liv & Iz to brighten the day, occasional phone calls or texts from friends, daily visits from Eva/Chris/John/her parents,.. and finally Grandpa Joe sessions with me when time & her health allows.

The point of all of this story-telling is simply this: if you’re in the area, I’m asking you ever so kindly to show your face at this F U Lyme event this Thursday, July 15th from 7-10 PM at The Other Bar, to bring your $5 and if you have more to spare, please do so. (

If you don’t live in the area, I’m asking you to donate. Contact me about how. Contact John. Contact Mrs. Helen. If you’re in the area and can’t make it OR if you’re not in the area and can’t donate, fine, fair enough. I understand. Just let this all soak in.

For 5 minutes, think about how fragile life is; how drastically it can change in the blink of an eye or in a matter of a night in Teri’s case; how no matter how bad you might think you have it, someone else probably has it worse; how the Government needs to recognize that Lyme Disease is an epidemic… that this isn’t just a story you heard and need to prove true through This is real life. And for me, it’s personal. Really personal. So take your 5 minutes, and help me raise awareness, for Elizabeth Chalker, for Teri Raser, for all Lyme victims in the world… and for all of those people in their lives affected by it.

Bird, you once told me I was never allowed to leave your life. I promise you, on everything, I’m not going anywhere. Not now, not ever. I’ll be here every day, every single day… until you can face the sunshine again. And I promise you the sun will shine again. Although I don’t understand why this happened nor do I like whatever purpose this all serves, if ever I believed someone had the strength to turn it all around, I would place bets on you. High bets, at that. And until then, I will happily grandpa joe it right beside you, making bucket lists the world will be envious of, crying when you feel compelled to do so, and laughing obnoxiously loud just when you need it.

Although your body might make you a caged bird, I hear your song and I know why you sing, and one day soon, you will find freedom again. Please know that but most of all, believe it. Believe it with all your heart, because I believe it with all of mine.

Alyssa’s Lyme Story

// April 7th, 2010 // No Comments » // Lyme Stories, Paint May Lyme Green

I have sat down and started typing this many times  but usually end up deleting after the first few sentences. I have a hard time opening up and sharing my story…so, please, be kind if I make a few mistakes.  I am 35 and I have Lyme.

I always have known something was a bit off. Through my twenties I struggled with many emotional difficulties..meaning my emotions were a bit all over the place. I figured I was just young and had always been told I was over-emotional and too sensitive. I drank too much at times because I couldn’t keep my head clear…I did things that never settled well with me-seemed out of character-but I couldn’t remember who I was exactly. I slowly was losing touch with me.  In my late twenties the migraines began. These blinding, pulsating migraines…so I started taking pills to help with the pain. The allergy problems started to creep in….so they gave me more pills for that. There was a bad bought of knee pain…so I was sent to the orthopedist. They couldn’t find anything so gave me some steriods and suggested explaratory surgery. I declined… finally went away. My knees would grind when I walked up the stairs, I would get tired after putting in too many work hours. I figured I was getting older…I just was slowing down…at 29.

At 31, things started happening fast. There were days I would cry…for no reason what-so-ever. I called the doctor and asked if my tear ducts could be broken….she laughed and said I was suffering from depression. After repeated attempts to explain I was not depressed, that something was wrong, she handed me a script for an anti-depressent. I didn’t take that. I went on a date and thought to myself, “I am all tingly and dizzy….I must really like this guy”.  We went out a few more times….One night after a drink I was walking down the path and my legs crumpled beneath me. I shrugged it off thinking maybe I had just tripped on something.  The allergies were getting worse. The doctor visits more frequent.  I was coming apart at the seams and my doctor wouldn’t listen. My mother knew something was wrong.

Then the petite seizures started. I didn’t fall to the floor and shake….no….that would have been recognizable. I would get this strange sensation through my body and the world would start going gray. My hands would tremble and I wouldn’t be able to speak. I could hear people calling my name but I couldn’t respond. I would come out of it and gasp for air and heave giant sobs begging my mother to help me. She went with me to the doctors….again…are you depressed? Pregnant perhaps? Mom stepped in and they refered me to a neurologist. In the mean time….I was losing my strength. I needed my mother to help me walk to the car, my right leg was dragging, my hands were curled in fists that I couldn’t open. My vision was declining daily, I was hunched and unable to sit up, I had sharp electrical pains shooting down my legs. The simplest tasks of washing my hair or pouring a drink were unmanageable. I had difficulty chewing and swallowing my food-to the point that sometimes I would have to take the food back out of my mouth so I wouldn’t choke. My body was shutting down.

My neurologist order an MRI and a spinal tap-ASAP! Someone finally was taking this seriously. He recoginzed that my slurred speech , gray skin tone, and extreme musle weekness was a problem. I slowly and painfully got through the test. The nerves along my spine had swelled out around my spinal column…making my Spinal Tap dangerous and painful. He called within 2 hours of the Tap…I needed to come back to his office right away. The MRI was in too. The MRI showed multiple white spots on  my brain and my Cerebral Spinal Fluid had a very high white cell count. The next day my life was changed forever….I was diagnosed with Late Stage Central Nervous System Lyme with Brain Infection (Meningits/Encephalytis). I was relieved to have an answer and my doctor was afraid for my life. There was nothing humorous when I said I feel my body dying….it was.

I was then refered to an Infectious Disease doctor…I was told he was very good, “Head of the hospital”. H e saw me right away, took one look at me am

nd replied “There is no way Lyme can make you this sick. We need to test for HIV and various other diseases.”  The blood was drawn, my IV was started, round the clock care was decided upon. Keep me home and comfortable with my family. The blood tests came back….and wouldn’t you know. Clean as a whistle. The good doctor shrugged, said one month of IV antibiotics will cure me and that I would just be sick for a few years. There was nothing they could do.

We found my LLMD days later. I spent 2 ½ years being treated for Lyme, Bartonell, Babesia, and Ehrichliosis.  It has been a long, torturous journy….and I do believe that hell lives right here on earth with us. 

Today, I have been antibiotic free for 6 months. I still get sick. I still have some funky days. I have my life though….and I have found new friends to replace the ones that walked away from me. I have my family, my sense of humor…I can walk, talk and work from home. I still have to pace myself but I am working on that. I go to Physical Therapy for full body reconditioning…and I am getting stronger. I talk to a therapist who gently guides me away from my fear of death and illness. Who helps me understand that  I will not be forever broken…that I will get to live and maybe even love again.  I am learning to forgive myself and my body.

 Special Thanks to my dream team: Mom, Wynn, Dr. Bock, my IV nurses, my massage therapist, Toni,     Dr. Ng, my girl Cindy….and a bunch of others who helped make a miracle happen!

My Lyme Story – Tiffany Gonzalez

// April 6th, 2010 // 2 Comments » // Lyme Stories, Paint May Lyme Green

Hi my name’s Tiffany, I wrote my story about my battle with Chronic Lyme Disease. I’m an open book and am proud to educate others – so they don’t end up in a bad place like I did.


Six years ago, I had been bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn’t been in me “long enough” to do any harm. They told me to keep an eye out for the classic “bulls eye rash” & if I got that, to call them immediately. I never got the rash, so I didn’t worry.

Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue – neurologic & cognitive issues became out of control. Things got worse after a bad roll over car accident I had in 2006, jolting my health system out of control.

Last summer (2009), I started forgetting what I was saying in the middle of EVERY conversation. I started to make myself talk really-REALLY fast, just so I wouldn’t forget WHAT I was talking about. I began dropping things too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would also make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel most of the time. My thighs trembled all the time & my knees would give out. I had been at my job for 4 years at this point, and knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia also became more common for me. I had anxiety often and over the smallest things. My fatigue was so bad I would sleep in my car at lunch, or go home and take a 1/2 nap. I couldn’t (still can’t) wake up in the mornings, and when I do, it takes my body forever to “loosen up”. I tend to walk like an old grandma and my ankles don’t bend. Really, I thought I was losing my mind… I started to cry often at the loss of myself… and not being able to do a THING about it. Treatment-wise, I went as far as letting my doctor give me injections in my low back and hips. They were so excruciating and I’d cry the entire drive home. Was this really my life? I eventually stopped the treatment when they wanted to do injections in my neck. NO WAY ! Onto the next doctor please…

Over 6 years I had been to over 10 doctors TRYING to find answers. Most of them told me nothing was wrong with me. I had so much blood work – I’m surprised I’m not anemic from all the blood they too. My test results were ALWAYS in perfect range. Eventually they tested me for Lyme Disease but the test came back negative (I NOW know that most of the time they do. And 50% of the time show FALSE negatives). So I was sent to see a sleep doctor, neurologist, gynecologist, psychiatrist, someone for my stomach, ect., to address each of the issues. For the longest time they all kept saying nothing was wrong. One said I was just depressed from the car accident I had, and they told me my aches and pains were a result of the depression. “HERE, take this Cymbalta it’ll make you better!” Ick – that didn’t work and I left my doctor wondering if I was really going crazy. How can I be wrong about what I felt and was going through?? I trusted the medical community, but I was SO confused -that in itself can lead you into a depression. Eventually I one of my doctors listened a bit and acknowledged the muscular pain. He diagnosed me with “Fibromyalgia” & “Chronic Fatigue”. FINALLY something more than the “There’s nothing wrong with you” diagnosis.

Lyme is usually misdiagnosed as Parkinson’s, Arthritis, MS, Lupus, Fibromyalgia, Gout, ADD, Epstein – Barr virus, Lou Gehrig’s Disease, Chronic Fatigue, & many others. Fibromyalgia is a syndrome; Doctors call something a syndrome when there is no medical reason they can find for a particular health issue. I knew there was something more to it, but how could I prove it? How could I prove what I had was REAL? How could I make others understand that I wasn’t just “being lazy” and that my fatigue was beyond my control? By the way, I had been working out with a trainer, lost weight, and was on what I thought was a healthy path. During that time, I broke down at the health club because I got to a point where I could do less and less and eventually could ONLY walk on the treadmill… But then that became too difficult for my joints. THIS IS NOT A WEIGHT ISSUE. I know it’s hard for SOME to believe. My diet was great I was on a good track… so then WHY was I getting worse? Anyway…

Last summer, while in the midst of my worst symptoms, I was watching the news. Those who really know me know I love Ch 7 News. I never change it. For SOME bizarre reason, I didn’t like their “Special Segment” and changed the channel to 5. Must’ve been a God thing, because, I was just flipping through but heard the words “Fibromyalgia, Chronic Fatigue, Parkinson’s etc” I immediately turned up the volume and what I saw/heard next changed the rest of my life…

The news segment was about this documentary movie called Under Our Skin. They were saying how ALL these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I COULDN’T believe my ears! While watching, I felt this INSTANT connection with these people they were showing. They sounded like ME & our stories were so similar. I felt like that may as well have been me on the TV… but wait… I had tested NEGATIVE in the past.

Next day, I couldn’t get the news segment out of my mind. I was ridiculously giddy. (My naive self feels stupid about my excitement now. If only I knew what I was in for) I did online searches for this movie and looked up Lyme Disease in Chicago . I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn’t really expect a call back. I mean, no one believed me before right? Why would someone call me back? Well, I got a call back from Lauren within a 1/2 hour!! WOW! Turned out she was in the news segment. Her whole family has Lyme disease & she lived right here in the suburbs. She directed me where I could go for the much more ACCURATE test called a Western Blot Blood Test.

That day, I sent out an FB message and email to my friends, inviting them to come see this Under Our Skin movie with me. NO ONE really responded. And who can blame them? They didn’t know anything about this “Lyme” thing and it didn’t affect them so why should they care? I get that. I do. But at least my lil sister Adriana came with me (thank you). She’s been a huge support this year, along with mom and dad. We saw the movie and I think I sobbed through most of it. I just felt like these people on the screen were telling MY story – without even knowing me. It was a crazy experience.

So I went for my Western Blot test and waited A MONTH for the results (that’s how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had ALL the symptoms right? Well, my doctor read (mis-read) the results and told me they were negative. I cried. I cried so much. I was glad I didn’t have this horrible disease, but then WHAT WAS WRONG WITH ME?!?!?!? I left with my bittersweet answer and never felt more defeated. NOW I was depressed.

About 3 months later, I went to the Lyme Support group to see if I could sell some “Awareness” jewelry. Lauren heads the group and asked to see my Western Blot results. We went through them together and her face went BLANK… she just looked at me with this face of “uh-oh”, turned to me and said, “We need to talk to Dr. ***** right now and you need to see a Lyme Literate doctor right away”. I literally started to shake, had a minor panic attack and walked out of the room… (FYI- The support group is in the same office as the doctor who ran my Western Blot)

After re-reading my results, Dr. ***** pulled me in a room, sat me down, and told me she was SO SORRY, She had read the results wrong and I was in fact POSITIVE for Lyme. I was balling at this point and just wanted to collapse. I could hardly breathe & for a moment, really wanted to die. She was crying too & was very apologetic. It was so surreal, sad, and stressful. Was this really happening? Or was this another bad dream? I have to say, I hold absolutely NO ill-will to this doctor. It was a mistake and although I was angry for a moment at what was just happening, I forgave her right away. I love her! She has been a blessing in my life.

So, they were positive for Lyme!! So now, I had to come BACK to terms with the results being positive. But this time, I had A HUGE amount of support around me. I had new Friends who would be there to help walk me through it. I was on solid ground (even though it felt like quicksand). This really was a bittersweet diagnosis, because as much as you want an answer, THIS answer told me I’d be screwed for a very long time – possible forever? The “Old Tiffany” probably wasn’t going to come back; at least not for a long time. I was going to be the “Always Tired, Always Hurting, Always Home, Boring, Tiffany” for an indefinite amount of time.

I will be THIS energetic girl again!!

My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment TWO weeks later with his PA. Do you have any idea how amazing that is??? My doctor has a 400 New Patient Waiting List – that’s right 400. I was VERY lucky… and I’ve been in treatment since October 2009. I’m already on my 3rd protocol for treatment.

Although I PROBABLY got the Lyme from the tick bite, I could’ve also gotten it from a horsefly bite or other insect (see below). I used to go up north to Land ‘O Lakes, WI where I had been bit many times by many little punks.

Lyme disease is an infection caused by Borellia Burgdorferi, which is a type of bacterium called Spirochete carried by ticks, fleas, deerflies, horseflies, and mosquitoes. Lyme disease has three stages and at any stage Lyme disease is very dangerous to somebody’s health. Stage One is known as the early stage, Stage Two is called early disseminated, and Stage Three is called chronic Lyme. Because it ‘hides’ most people take YEARS to get the proper diagnosis and it ends up being TOO MUCH, TOO LATE. Mine took SIX YEARS.

Along with Lyme come a lot of “co-infections”. The co-infections are what make most of us lymies really sick. They are called Ehrlichia, Babesia, Bartonella & some others. There are parasites as well, which I also just tested positive for. Lyme & its punk friends may be caused by a little itty bitty insect, but causes SO many big problems. It’s lead me to Hashimoto’s Disease (thyroid disease), Endometriosis, Ovarian Cysts, Reynaud’s, Daily Migraines, GERD, Anxiety, and a ton of other common Lyme issues.

As you can imagine, it’s a tough disease, and insanely hard to treat… thus making you feel like you’re going insane! It’s hard, it’s REALLY hard. There is no known cure, and no ONE way to treat. Most of my “Lymie” friends are on months of antibiotics, most get them by IV. Unfortunately, Infectious Disease Guidelines say there is no such thing as Chronic Lyme Disease and believe it can be cured with 2 weeks of Doxycycline antibiotic. It’s very frustrating and can lead many of us lymies feeling hopeless. I go back and forth with those feelings; Depends what day it is. Because of the ISDA’s ridiculous guidelines, our treatments are NOT covered by insurance. My bill with my doctor is already over $1,400 and growing. That is all out of pocket PLUS my medications & supplements that insurance WON’T cover… or cover partial… Just one of my medications, Mepron, cost me $230.

SOME of my daily medications

I try to sell my jewelry to help pay for the medical costs.( http://www.tiffanygjewelry .com ) But even that’s hard, because my hands hurt and cramp too much to make more jewelry… it’s a catch-22.

One of the closest “Lyme Literate MD’s” is in Fond du Lac , WI . I drive 3 hours each way to see him. I just got diagnosed in October and have been told I have at LEAST another year+ of treatment. Right now I take about 25+ different medications and supplements, & shots… in hopes that ONE DAY I will be at least a LITTLE bit better. For now, I mostly stay home and live life vicariously through online friends – wishing I could do what they’re doing. Wishing that I could go out for at least ONE night of fun with friends or family, and not be laid up in bed the next day for over 17 hours. I have hope… I have strength… even though it may not seem like it at times… I will make it through.

I have a lot of video posts on my page you should watch. Not for me, but for YOUR own education.

*You DON’T need feel sorry for me, but you DO need to please educate yourself and others – so this never ever ever happens to someone you love!
Also DON’T stop inviting me out – I still want to feel a part of your lives.
And DON’T be afraid to talk to me about it, I don’t mind at all. But, If you’d rather not talk about it, that’s fine too.

Here’s a great video ch?v=LNdG6Ks4Ddo
Check out -they have release a GREAT documentary on Lyme stories


Some tips:
Lyme is alive in IL… you CAN get Lyme out here –no matter what your doctor says.
When spending time outside or in the woods, etc, always check for ticks!!!!!!!! They can be SO tiny and they like to hide in spots like underarms, behind knees, belly buttons. MINE however was in my low back.

Remove it immediately, check online for instructions. And call your doctor and DEMAND to be prescribed Doxycycline!

Thank you for your time,
Tiffany G

****Below is a post I found from a fellow Lymie and is VERY informational*****

“The Great Imposter,” more commonly known as Lyme disease is taking over our world and people don’t even realize it. Lyme disease is killing hundreds of people every minute and most people who have it never know until it is too late. Lyme disease may never be fully recorded because our population doesn’t believe it exists. Only by understanding the origins of this disease, how it is transmitted, the symptoms, and the treatment can we hope to prevent more suffering.

Lyme is most commonly heard of being transmitted through a tick bite; although this isn’t untrue; there are many other ways Lyme Disease can be transmitted. If someone with Lyme is an organ donor and dies, the person receiving the organ has a high possibility of retaining this disease. A women who gets bit before or during her pregnancy, she can pass Lyme Disease through her bloodstream to the poor,

innocent child. The same applies to a mother breastfeeding a child, the disease is likely to be passed through the breast milk. The most common way for Lyme Disease to be transmitted is through a tick bite. A tick is any of numerous small bloodsucking insects.

In stage one of Lyme Disease, the symptoms are chills, fever, headache, and muscle pain. It is commonly said that the main symptom of stage one Lyme is the bull’s eye rash but only thirty to forty percent or people show that symptom.

Stage two Lyme Disease’s symptoms are blurred vision, fainting, fatigue, discomfort, headache, light-headedness, joint inflammation, muscle pains, and stiff neck. Stage two is where things start to get a little bit more noticeable that you have a problem but most people don’t catch the disease until it reaches stage three.

Chronic Lyme is the worse to have. Stage three can kill you if you do not get the proper treatment. The symptoms are chronic arthritis, fatigue, headaches, memory loss, mood changes, sleep disorders, abnormal sensitivity to light, confusion, and numbness. Other common symptoms may include nausea, vomiting, facial paralysis, swollen lymph glands, enlarged spleen, irregular heartbeat, seizures, and skin disorders.

There are many various ways to treat Lyme Disease but the most common is oral antibiotics. The types of antibiotics are doxycycline, minocycline, amoxicillin, cefotaxime, azithromycin, and clanthromycin, but those are just a few. The cure for Lyme Disease is still unknown, unfortunately, but the medicines do take the edge off the symptoms. You have to find a doctor that doesn’t believe Lyme can be cured with four weeks of antibiotics. For chronic Lyme, the common treatment is intravenous antibiotics which is an IV and can be very expensive. The best way for anyone to get through Lyme Disease and its dreadful symptoms is to keep your sense of humor and modify your lifestyle to practice good nutritional habits because being obese does not solve anything.

Most doctors do not treat Lyme patients so people have to go on a hunt to find a Lyme specialist, which there aren’t many of. If the Lyme Specialist is far away, people must also find a health care provider locally to help with their symptoms; Lyme patients receive a bunch of medicine, the best thing to do is establish a good relationship with a pharmacist since she will be the one you see a lot to get your medicine.

Prevention is the key term! If everyone prevents themselves from getting bit by a tick, they will not have to worry about Lyme Disease. When someone is outside, it is best to avoid tick areas like woods and trees, but if someone must go into a tick area, wear light clothing so the ticks can be seen.

“If it weren’t for AIDS, Lyme would be the number one infectious disease in the United States and Western Europe . Lyme is grossly unreported. In the United States we probably have 200,000 cases per year,” quoted by Nick Harris. By understanding the origins of this disease, how it is transmitted, the symptoms, and the treatment can we hope to prevent more suffering in the future. “The Great Imposter,” Lyme Disease, is killing away our population and it is only going to be stopped if we inform ourselves and other people about its dangers.

My Lyme Disease Plight – Chris Nimphius

// April 6th, 2010 // No Comments » // Lyme Stories, Paint May Lyme Green

Nearly 2 years ago I was on spring break having the time of my life. Was partying quite hard as most college young adults do. I remember very vividly when my first symptoms started to manifest. It was the last night of our stay and we had just started out on our adventure towards debauchery. We finally had made it to the club. One of my buddy’s was lagging behind so I told the rest of the people I was with to go ahead, that I would catch up with them while waited for my friend. After some time, I was informed that he wouldn’t be joining us so I went ahead with my plans. I attempted to recover the group of friends that had gone ahead without me. Mind you the club was tremendous in size and could fit an excess of over 10 thousand people. Well while frantically looking for my friends I became suddenly extremely lightheaded, light/noise sensitive and thought I was going to collapse at any moment. I was now even more panic stricken and needed to find my friends. I tried to elicit all the energy left in my mind and body to find my friends. Finally I had located one of my friends and implored him to leave with me. This way if I was going to faint in this strange environment, I at least wouldn’t be alone. We then left the club and decided it was best to stop at a cafe to get me water. Maybe I was just extremely dehydrated? Well much to my dismay this didn’t help in the slightest degree. We finally made it back to the hotel, which seemed like an eternity to get to. At least this was a refuge and a safe haven from the all impurities outside. I tried to sleep before we had to catch a flight back home in the morning but I had no such luck. Then the notorious preamble to lyme started. Suddenly I had flu like symptoms where I was freezing yet sweating profusely all at the same time.

Morning came as I stumbled my cinderblocks I now had for legs through the airport while trying to maintain mental vigor and not fall. I finally made it back to my college and went right to the doctors. They tested me and nothing serious came back. They gave me some antibiotics and sent me on my way. For the next week I had a really arduous bout with insomnia and felt as though I was emitting out a gallon of sweat from my body each night. My sheets were completely drenched. I managed to muster up enough energy to get to class but was totally in cloud 9 and disconnected. A week went by and the night sweats started to subside but I still couldn’t sleep and was extremely fatigued. I was reiterating to my mother what I had been experiencing. She had talked to a doctor who insisted that I go for walks in order to get vital energy from the sun. After a few weeks this started to work and the lightheaded sensations sleep deprivation and fatigue started to diminish. I finally thought I had weathered the storm whatever it had been.

I guess I spoke to soon and was fine for 3 months, never felt any residual effects from that incident. I had taken a job down in Maryland where I was very over worked; working 6 sometimes 7 days a week with a minimum of 75 hours a week. It was rigorous and my body was starting to send indications that I was starting to get worn down. I didn’t want to listen at first being bull headed as I am and tried to get acclimated to this lifestyle the best I could. After a while I realized I just couldn’t endure anymore. So I quit and tried to live a mundane life for the next 2 weeks. I decided that I needed to move back to NY to be closer to my family. The last night before I returned home to NY I started to become real lightheaded again and that night my bed was drenched in sweat yet again. I thought, great here we go again!

I finally made it home and didn’t have any more night sweats but I was beyond lightheaded on a daily basis now. Didn’t know what the hell was going on to say the least. I simply just tried to ignore these signs and thought it was sinus pressure induced or something. Well this went on for about a month and the worst part was I had just started a really promising job. It was a chef at a highly distinguished catering company. From there sh*t hit the fan and took a turn for the worst. It was Halloween 2008 and I was working over one of the big tilt skillets at work, when I suddenly lost my legs and had to sit down for a minute. I managed to regain composure and make it to the bathroom, trying to be inconspicuous the whole time. I had too much pride to let anyone know what has going on. I tried putting water on my face, taking deep breaths and drinking lots of water. I had managed to convince myself that I would get through this. So I continued doing my job while leaning my body up against every table or object I could; in order to keep stable. Somehow by the grace of God I made it through the day without suspicion from anyone. I drove home that night and almost went right off the road. The light from oncoming traffic was too agonizing and I couldn’t stay in my lane. The sensible thing to do should have been to pull over and call someone to get me, but at the point I was compelled just to make it home as soon as possible. I finally made it home and hugged my mom harder than I ever had before. I told her what had just transpired then proceeded to break down in tears. My courage was totally reduced to pieces and I had no clue what was going on. Now if things couldn’t get any worse I felt all the symptoms daily now coupled with massive head pressure and migraines. People started to become aware that things were not right. I became sluggish and normal tasks looked very problematic for me. Luckily the catering season was about to come to an end for a yearly 2 month winter hiatus. I managed to escape the season relatively unharmed other than a thumb cut. My insurance finally had kicked in and now I could devote the proper time to find a prognosis while on break..or so I thought!

A month into the break all my symptoms seemed to exacerbate and I could barely walk. I went through the whole convoluted process of seeing doctor after doctor, specialist after specialist who each had their own words of wisdom and take on the matter. I convinced one of them to treat me for lyme even though my test had come back negative. I took the 3 weeks of doxy and it did nothing but make things worse. I even tried acupuncture to see if any of this was stress induced. Big no no for us with lyme!!..Your veins are highly sensitive to have a myriad of needles stuck in you.

Anyhow, last January on my 23rd birthday I checked into the hospital suggested by my neurologist to run a battery of tests on me. I had MRI’s, CAT scans, Spinal tap, HIV, AIDS test and saw an infectious disease specialist. Everything came back stellar except for an elevated white blood cell count. They released me from the hospital told me I had migraine issues and prescribed me meds for them. They suggested I see a balance specialist next. So there I went where I had a balance test done. It came back with slight damage in my left ear but was at the marginal level to have any impact. The specialists said I had a vestibular problem and would need balance therapy. So I went along with it and went for balance therapy 3 times a week. Each time I went my vertigo would just increase gradually and the therapist was very perplexed that I hadn’t shown any improvements. I decided to go seek a second opinion at the Eye and Ear Infirmary in NYC; one of the best. I took another vestibular test and various others. This time nothing came back at all. I went to the head of the department who was well renowned for making “miracles” happen with his patients. He treated me for a solid 4 months and once again no substantial gains. He a very confident man now was also baffled and told me he was deeply sorry that he could do nothing for me.

Now I was near the end of rope, didn’t know where to turn to and deteriorating rapidly. I had now completely abandoned the life I once loved and cherished so dearly. I couldn’t move out of bed and trying to maintain simple dialog with someone now seemed next to impossible. I began to take on a very tumultuous demeanor and found my emotional threshold was on a very short line. This is when all the neurological factors began to come into play. The brain fog, poor concentration, poor memory, shaking, light sensitivity, anxiety, head tremor, blurred vision, heart palpitations, dyslexic indications and total problems with sensory integration.

Mid September 2009 is where I finally stumbled upon the serendipity I had been looking for. A friend of the family got wind of someone who has been in remission from Lyme disease for nearly 8 years. She was informed about what symptoms entailed and urgently told me that I should go see her LLMD that her case sounded and awful lot like mine. So I booked my first appointment with an LLMD in Mount kisco, NY. I went into the office wrote down my symptoms and took blood. The doctor immediately put me on Amoxicillin and was convinced I had lyme. My blood work returned and I received an equivocal negative result once again. The doctor this time was not discouraged by this and stated that this frequently happens to about 50% of patients due to inaccurate tests and such. He said it’s often referred to as a false negative. The only concrete evidence was that my white blood cell count was elevated substantially and he calls these lyme marker indicators. So as of now he is basing my case on the literature and not the tenuous tests and knowledge that surrounds this dreadful disease.

The oral prescriptions I was on for 2 months did virtually nothing for me so now I am on the big dog “Rocephin IV” coupled with Zithromax. The first 2 months I was starting to make some head way. Suppressions in fatigue, dizziness, migraines, heart palps, brain fog, concentration, blurred vision and so on. Then I started to herx real badly around week 10. Now all these symptoms returned full fledged if not worsened and now new symptoms began to emerge. Now companioned with the already horrendous symptoms, I started to feel excruciating pains throughout my body and became intermittently numb throughout the course of the day. The doctor says this is a telltale sign of good things to come and I trust him implicitly. He has done wonders for many and I confide in him immensely. This is now my 14th week of treatment and am still in the abyss of a herx.

I am now 9 months in on this merciless battle and have just switched LLMD’s and am now on a very compressive protocol. I re-took my lab work and this time sent it through Igenex Labs. I finally after nearly 2 years of searching for some peace of mind received a strong positive Western Blot Lyme test which is CDC positive through the State of NY. My blood work also showed that I have secondary infections which are accompanied by a tick bite as well. I am positive for Epstein Bar Virus, Mycoplasma and HHV-6. I also have low levels of exposure to Q-Fever but my doctor believes the levels are so slow that it isn’t something to be concerned with just yet. I am still tentative as to where and when I had contracted Lyme Disease. There are 4 different scenarios that could have been the case. The longest would go back about 6 years and the least amount of time being 2 years. It is also very common for the disease to stay in a quiescent stage for a long time. This could explain why it took so long for my symptoms to manifest in the first place.

So yes my plight continues as I desperately try to make sense of this all. However I have seen some progress made. I was bed bound for months and could barely pull myself together to get to the bathroom or hold myself up long enough to take a shower. These days I am still facing a good amount of ailments that still make me incapacitated and home bound. But now I am able to do small tasks as long as they are limited and can never be sequential. Living a life with a chronic illness really puts things into perspective for you. It makes you appreciate the things you once took for granted and of course your health being of paramount importance. The compulsory confinement is not something easy to come to terms with for anyone, none the less being a young adult. I never in a million years would have conceived a simple task like walking your dog to your front yard would be so grueling, or holding a conversation with your best friends who you have known for years would be something you would dread doing, or simply running an errand into a store would be something I no longer could bear because my brain doesn’t have the capacity to deal with environmental stimuli. This disease is one of the most misunderstood and distorted disease and is becoming a pandemic. It really strips you have your identity and personal sense of self. The journey back to health is a long haul, costly, filled with affliction, adversity and is one of the toughest uphill battles one will probably ever encounter.
I know this is going to be a massive hurdle and is going to be a trial by fire in all essence of the phrase. But I have to have credence I will see the dawn of a new day and regain control of my life. The sense of solidarity in the lyme community has lifted my spirits when I am in total despair. So as a testament to myself, family, and supporters I will put forth a valiant effort and make sure when I see this through that those who are still suffering or have just started their journey towards health find the courage and support they so long for. Although difficult to deal with all the slander, scrutiny, and lack of credibility surrounding this disease we all have a purpose here. And that is we will set the stage as we are the pioneers for this disease. Because of our integral part, there subsequently will be a voice for those in the future and hopefully a diagnosis before it becomes incorrigible. Stay strong everyone and carry on!