My Lyme Story – Tiffany Gonzalez
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.
UPDATED APRIL 6, 2010
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.
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.
*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, 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.
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.
- P.S. MAY IS LYME AWARENESS MONTH – PLEASE SHOW SUPPORT BY HANGING UP A LIME GREEN RIBBION AROUND YOUR TREE OR PET ECT. <3
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,
****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.