Tiffany's Battle... From Hopeless to Hopeful
Hi my name’s Tiffany G, I've written about my battle with Chronic Lyme Disease. I'm an open book and proudly educate others - so they don't end up in the terrible place like I did.
Back in 2004, I had been bitten by a tick. I was told by my doctor’s nurse that I had nothing to worry about because the tick hadn't been attached to me "long enough" to do any harm. (Protocol is usually 24hrs, if it's in you for less time, they THINK you won’t have a problem). I saved the tick, she told me not to, and to flush it. I said I heard it should be tested, she said no need to because there's no such thing as Lyme in Illinois. So I went on with life. I didn't have insurance, but said I was willing to come in IF I NEEDED to. She told me to keep an eye out for a "bulls eye rash" & if so, to call them immediately. She didn't seem concerned, I never got the rash, so I didn't worry…
Not too long after the bite, I began to get horrible headaches. Then came the abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue – and over time, neurologic & cognitive issues became out of control. Things got much worse after a bad roll over car accident I had in 2006, compromising my immune system & jolting my health out of control.
In the 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. My throat would feel like it was closed up & I'd choke for NO reason. 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 closing 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 & 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 elderly person and my ankles don't bend. Honestly, 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 one doctor give me injections in my wrists, low back, and hips. They were so excruciating and I’d cry the while driving 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 12 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 took. My test results were ALWAYS in perfect range. Eventually they tested me for Lupus, Arthritis, & Lyme Disease, but the test came back negative for Lyme (NOW I know that 70% of the time Lyme Tests Results show FALSE negatives *See why, link on bottom of page*). 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 Tiffany, I'm prescribing you 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 alone can lead you into a depression. Eventually I one of my doctors listened to my concerns, pains, and acknowledged the muscular pain. He diagnosed me with “Fibromyalgia” & “Chronic Fatigue”. FINALLY!!!... something more than the “There’s nothing wrong with you” diagnosis.
Back in 2004, I had been bitten by a tick. I was told by my doctor’s nurse that I had nothing to worry about because the tick hadn't been attached to me "long enough" to do any harm. (Protocol is usually 24hrs, if it's in you for less time, they THINK you won’t have a problem). I saved the tick, she told me not to, and to flush it. I said I heard it should be tested, she said no need to because there's no such thing as Lyme in Illinois. So I went on with life. I didn't have insurance, but said I was willing to come in IF I NEEDED to. She told me to keep an eye out for a "bulls eye rash" & if so, to call them immediately. She didn't seem concerned, I never got the rash, so I didn't worry…
Not too long after the bite, I began to get horrible headaches. Then came the abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue – and over time, neurologic & cognitive issues became out of control. Things got much worse after a bad roll over car accident I had in 2006, compromising my immune system & jolting my health out of control.
In the 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. My throat would feel like it was closed up & I'd choke for NO reason. 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 closing 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 & 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 elderly person and my ankles don't bend. Honestly, 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 one doctor give me injections in my wrists, low back, and hips. They were so excruciating and I’d cry the while driving 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 12 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 took. My test results were ALWAYS in perfect range. Eventually they tested me for Lupus, Arthritis, & Lyme Disease, but the test came back negative for Lyme (NOW I know that 70% of the time Lyme Tests Results show FALSE negatives *See why, link on bottom of page*). 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 Tiffany, I'm prescribing you 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 alone can lead you into a depression. Eventually I one of my doctors listened to my concerns, pains, 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 “the great imposter” is usually misdiagnosed as Parkinson’s, Arthritis, MS, Lupus, Fibromyalgia, Gout, ADD, Epstein - Barr virus, Lou Gehrig’s Disease, Chronic Fatigue, & many others. I knew there was something more to just having Fibro, 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 had to fire my personal trainer & could ONLY walk on the treadmill... But then THAT became too difficult for my joints. My diet was great & I was on a good track... so then WHY was I getting worse physically?
June 2009…
While in the midst of my worst symptoms, I was watching the news Ch 7 News & never change it. For some weird reason, I didn't like their "Special Segment" and flipped to channel 5. Must’ve been a God thing, because, something caught my attention, I 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 SO MANY people were misdiagnosed for years with various diseases or syndromes, but eventually found out they actually 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 prayed and asked God if this was just me thinking that was my issue, or was I finally ready for the diagnosis? 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 a Lyme 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 someone within a 1/2 hour!! WOW! Turned out she was in the news segment & her family has Lyme Disease; she lived right here in the suburbs. She directed me where I could go for the much more ACCURATE blood test called a Western Blot by IgeneX Lab.
So I went for my Western Blot test and waited A MONTH for the results. 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 (October ’09), I went to the Lyme Support Group to see if I could sell some "Awareness" jewelry & get tidbits on pain management. The head of the group and asked to see my Western Blot results. We went through them together and her face went BLANK... she 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". I literally started to shake, had a minor panic attack. I ran out of the room. (The support group is in the same office as the dr that 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 hysterical 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 another bad dream or was this REALLY happening? I MUST to say, I hold absolutely NO ill-will to this doctor. It was a mistake, the results are difficult to read, and although I was angry for a moment at what was happening, I forgave her right away.
The news segment was about this documentary movie called Under Our Skin. They were saying how SO MANY people were misdiagnosed for years with various diseases or syndromes, but eventually found out they actually 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 prayed and asked God if this was just me thinking that was my issue, or was I finally ready for the diagnosis? 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 a Lyme 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 someone within a 1/2 hour!! WOW! Turned out she was in the news segment & her family has Lyme Disease; she lived right here in the suburbs. She directed me where I could go for the much more ACCURATE blood test called a Western Blot by IgeneX Lab.
So I went for my Western Blot test and waited A MONTH for the results. 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 (October ’09), I went to the Lyme Support Group to see if I could sell some "Awareness" jewelry & get tidbits on pain management. The head of the group and asked to see my Western Blot results. We went through them together and her face went BLANK... she 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". I literally started to shake, had a minor panic attack. I ran out of the room. (The support group is in the same office as the dr that 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 hysterical 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 another bad dream or was this REALLY happening? I MUST to say, I hold absolutely NO ill-will to this doctor. It was a mistake, the results are difficult to read, and although I was angry for a moment at what was happening, I forgave her right away.
Volunteering for a lyme awareness event in 2010
So, the results were positive....
So, the results were positive for Lyme! 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 understood my situation & 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? I feared 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.
My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment TWO weeks later with his PA. It was amazing that I even got in that YEAR! My doctor had a 400 New Patient Waiting List - that's right 400. I was VERY lucky! I started treatment in October 2009 and by 2010 I was on my 4TH round of 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.
*So… WHAT IS LYME???*
Lyme disease is an infection caused by Borellia Burgdorferi, which is a type of bacterium called spirochete carried by TICKS, FLEAS, DEERFLIES, HORSEFLIES, & MISQUITOES (any BITING insect with a gut). 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 Lyme ‘hides’, most people take YEARS to get the proper diagnosis and it ends up being TOO MUCH, TOO LATE. Mine took SIX YEARS.
My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment TWO weeks later with his PA. It was amazing that I even got in that YEAR! My doctor had a 400 New Patient Waiting List - that's right 400. I was VERY lucky! I started treatment in October 2009 and by 2010 I was on my 4TH round of 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.
*So… WHAT IS LYME???*
Lyme disease is an infection caused by Borellia Burgdorferi, which is a type of bacterium called spirochete carried by TICKS, FLEAS, DEERFLIES, HORSEFLIES, & MISQUITOES (any BITING insect with a gut). 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 Lyme ‘hides’, most people take YEARS to get the proper diagnosis and it ends up being TOO MUCH, TOO LATE. Mine took SIX YEARS.
Sigh...
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 parasite infections as well. 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 (hypo-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 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 last lyme doctor is already thousands of dollars and growing. That is all out of pocket PLUS medications & supplements that insurance WON’T cover, or cover partial. Just one of my medications, Mepron, had cost me $230 (it’s a $1,000 med). I try to sell my jewelry to help pay for the medical costs, but even that's hard, because my hands hurt and cramp too much to make more jewelry... it's a “Catch-22”.
As you can imagine, it’s a tough disease, and 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 last lyme doctor is already thousands of dollars and growing. That is all out of pocket PLUS medications & supplements that insurance WON’T cover, or cover partial. Just one of my medications, Mepron, had cost me $230 (it’s a $1,000 med). I try to sell my jewelry to help pay for the medical costs, but even that's hard, because my hands hurt and cramp too much to make more jewelry... it's a “Catch-22”.
The closest LLMD “Lyme Literate Medical Doctor” was in Wisconsin. I would drive 3 hours each way to see him. I was diagnosed in October ‘09 and had been told I have at LEAST another year+ of treatment. I'm still sick. When I wrote out my story in 2010 I was still taking about 45+ different medications, supplements, liquid meds, & 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. Please pray that we get more doctors on board with the Lyme epidemic & proper treatment.
I have hope… I have strength… & although it may not seem like it at times… I know I WILL make it through...
Update June 2011: Well, since I last updated this, I have had a lot of turns in my health and life events. In November of 2010 I lost my full time job due to complications involving my disease. This was also the last of any medical insurance I had. I have not seen a Lyme Literate doctor since Fall of 2010 & have been unable to treat my disease. The few medications I had were covered by insurance before, but no longer are since my medical expired. I have been pushing through and trying to hang in there. I'm not going to lie. It's been extremely difficult to keep the faith & keep up hope. Living with this ever changing disease is hard enough without the added stress of not being able to afford medications or treatments.
I want to thank those who have been of great moral support to me. Any purchases made here to help cover one of my medications. Thank you SO much for taking a look & purchasing. Making jewelry can be hard on my hands & fingers, but it keeps me distracted & keeps me going.
Love Always,
Tiffany G
*Read my story & "share" on Facebook
Tiffany's Facebook - "My Lyme Story"
*Reasons For FALSE Negative Lyme Tests
www.lymefight.info/files/FalseTest.pdf
*Check out the award winning DOCUMENTARY movie “Under Our Skin” www.underourskin.com
*Click below to make a donation to Tiffany:
I have hope… I have strength… & although it may not seem like it at times… I know I WILL make it through...
Update June 2011: Well, since I last updated this, I have had a lot of turns in my health and life events. In November of 2010 I lost my full time job due to complications involving my disease. This was also the last of any medical insurance I had. I have not seen a Lyme Literate doctor since Fall of 2010 & have been unable to treat my disease. The few medications I had were covered by insurance before, but no longer are since my medical expired. I have been pushing through and trying to hang in there. I'm not going to lie. It's been extremely difficult to keep the faith & keep up hope. Living with this ever changing disease is hard enough without the added stress of not being able to afford medications or treatments.
I want to thank those who have been of great moral support to me. Any purchases made here to help cover one of my medications. Thank you SO much for taking a look & purchasing. Making jewelry can be hard on my hands & fingers, but it keeps me distracted & keeps me going.
Love Always,
Tiffany G
*Read my story & "share" on Facebook
Tiffany's Facebook - "My Lyme Story"
*Reasons For FALSE Negative Lyme Tests
www.lymefight.info/files/FalseTest.pdf
*Check out the award winning DOCUMENTARY movie “Under Our Skin” www.underourskin.com
*Click below to make a donation to Tiffany:
Organza Awareness Ribbons - Fundraiser for Tiff
Hey all, I'm trying to raise funds to re-start medical treatment. I'm making these Lyme Awareness ribbons out of Organza, with a crystal in the middle & a pin in the back. They are approx 3" & I'm selling them for $2 each OR 3 for $5. You can order them by making a donation here at the bottom of my page. Order many and pass them out at your next awareness walk or to family!
*Include your Name, Address, & amount of pins you'd like. I'd REALLY REALLY appreciate it. These would be great to wear year round.
I can take the crystal off for men's pins if you'd like too & make them in other "awareness" colors.
*Include your Name, Address, & amount of pins you'd like. I'd REALLY REALLY appreciate it. These would be great to wear year round.
I can take the crystal off for men's pins if you'd like too & make them in other "awareness" colors.
