Hey everyone, check out this great article on our fellow Lyme-Fighter Wendy Schryver. Many of you may know her from Facebook, and how involved she is in the Lyme community. A great article for a fellow Lymie fighting the good fight!
Archive for Lyme Stories
The Lymenaide YouTube channel is already filling up with amazing stories of those with Lyme disease as well as the first round of internet PSA.
Here\’s the link to the Lymenaide YouTube channel where you can also see a few of the interviews Kacie and I did at some support groups here and in Connecticut. It’s only the first and already such great info on there! We’ll be adding as the month progresses, but it’s so exciting to see it all coming together.
Ashley had a great post on Lymenaide about the PSA filming taking place this week in California, Read it here.
Keep up the great work everyone, facebook was a flurry of lime green today, with so much great info on Lyme disease being shared with all our friends. It’s just the beginning.
Do you have Lyme or have a Lyme story you want to tell? There’s still time, the whole month of May is ahead of us. Contact us at LymeBitesDotCom@yahoo.com for more info.
Also this Monday morning I will be doing a radio interview at 7:30am (ugh) at a local station in Kingston (NY) on 920AM, WGHQ. Click here to listen to the interview Monday May 3rd at 7:30am. I’m thrilled at the opportunity to tell my story as well as promote Lyme disease awareness month (even if it is at 7:30!)
This is so important…we can keep others from having to endure what I’ve been through this past year by just spreading the word. Lyme disease is real with hundreds of thousands of new cases expected this year alone. Don’t be one of them. Don’t let someone you love be one of them. It’s time to let the world know what Lyme disease does.
Lymenaide has an amazing post today from Candice Accola, from the hit TV series “Vampire Diaries” as she helps to Paint May Lyme Green. Please check it out:
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…..it 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!
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.