In April, Avril Lavigne revealed her battle with Lyme disease. She had previously alluded to mysterious health issues, although no one realized the severity of her illness. For five months, Avril was bedridden and could barely manage to shower once per week. At the time, Avril believed she was 80% better but still had to be careful. How terrifying to simply lose half a year of life to this disease.
Avril Lavigne visited GMA yesterday to talk about her ongoing recovery. She revealed that it took doctors forever to figure out what was wrong. They kept telling her it was all in her head.” It took Avril two months of her own research to figure out she might have Lyme disease, so she found a specialist. Avril wants to spread the word about how frustrating it is to deal with a misdiagnosed illness:
Her doctor’s attitudes: “I was in Los Angeles, and it was literally the worst time of my life. I was seeing every specialist, and literally like the top doctors … It was so stupid. They would pull up their computer and be like, ‘Chronic fatigue syndrome’ or ‘Why don’t you try to get out of bed, Avril, and just go play the piano?’ or ‘Are you depressed?’ This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them … ‘You’re crazy.'”
Her progress: “I’m doing a lot better; seeing a lot of progress. I’m just really grateful to know that I will make a 100 percent recovery.”
[From GMA
Avril’s still only halfway finished with her course of treatment, which includes antibiotics and lots of rest. The really unfortunate part about her case is that doctors couldn’t figure out what was wrong, so a simple course of antibiotics wasn’t enough. If Lyme is caught early enough, treatment can be much quicker. But Avril’s case was prolonged by incompetent doctors. This sounds like what Ashley Olsen is dealing with in her rumored battle with Lyme.
In addition to spreading Lyme disease awareness, Avril is also promoting her new single, “Fly.” The song will benefit the Special Olympics.
Photos courtesy of Fame/Flynet & WENN
I’m not a fan of Avril’s music but DAMN, I applaud her for being open about the soul-sucking hellhole that is Lyme Disease. Much love from a fellow LD sufferer who’s been on the receiving end from arrogant doctors too.
I agree. I think people in general just don’t get Lyme disease – that you might feel ok one day and the next day you are bed-ridden. People, I’m talking non-doctors here, just assume its all in your head or you are making it up to get attention. I applaud Avril and any other person in the limelight who talks about their ordeal publicly because maybe then the public will get some clue as to how awful this disease can be.
BTW – I can now safely say that I have developed a tick phobia!
I bet a lot of us have similar stories to share and wonder if mis- and under-diagnosis happen more to women. Doctors are too quick to think we need a checkup from the neck up.
Wishing Avril a complete recovery.
I agree. The medical system, treatments, medication etc. are more targeted at men. For example a heart attack will have different symptoms depending whether you are a man or a woman. Often women suffer from pain in the stomach/belly area, and only a third suffer from the “typical” pain in the breast area/left shoulder and arm. So the symtoms are not recongnized correctly and lead to a higher mortality rate among women. 🙁 Luckily this now getting more attention – at least in my country (Austria).
Yup. I myself had a specialized anxiety disorder that was so serious that I describe the end days of the disorder as akin to the bottoming out experience of an addict. I’ve lost jobs because of it, and found enjoying relationships, people, and life impossible because of it. I was once asked by a therapist if I heard voices while in the midst of trying to explain what my life was like. Of course they know all about the glamour diseases that afflict minute percentages of the population, but almost nothing about relatively common disorders. It was honestly one of the most depressing and horrifying moments of my life. They either know their stuff or they don’t. Frequently, they just don’t.
I totally agree.
I had a psychologist who asked me two visits in a row hows my drinking. I just stared at her like an idiot until I realized that she had me mixed up with another patient. I wanted to say to her “lady, I have enough problems written down in that file of mine but alcoholism isn’t one of them.” Second time she did it she got mad at me for correcting her. How hard is it to just skim my file before you grace me with your 20 minutes of insight?
To be honest, it is a very common question that psychiatrist ask. I hear it every time I go in for a med eval (also anxiety disorder sufferer). I don’t take it personally – they just want to make sure I am getting the treatment I need.
I hope you are doing well now. It IS an indescribable hell to be where we have been.
Well, that’s an interesting bit of information. My basic point however was that until very, very recently, mental health folks were trained to understand very rare forms of mental illness such as schizophrenia, while having no training whatsoever for OCD, OCPD, body dysmorphic disorder, etc. I still believe that they focus in on the more serious disorders because they’re completely incompetent when it comes to the more likely causes of suffering. I bet hand over fist that the younger, better trained people start with normative questions pertaining to anxiety symptoms and work their way up the ladder if need be. That’s how it’s supposed to be done.
With Neuro Lyme I did need a check up from the neck up. (NO JOKE) LOL. Many different types of testing of my brain.
The scariest part of any illness is when no one knows what you are suffering from and try to convince you’re crazy. And this is a woman with great means Imagine when you don’t have such medical access.
I second that opinion. Here’s a young woman with means and dismissed as crazy. The rest of us have little hope.
Amen. My son was sick for years – the ‘experts’ kept misdiagnosing him, and when he (surprise) didn’t get better, suddenly it was all in his head. Right, because my formerly fun-loving, active 8 year old loves pretending to be sick…?
I was able to piece together what was wrong with him (thanks interwebs!) and find him the right doctors. He will probably never be 100% healthy, but finally knowing what’s wrong and being treated correctly (and with respect) by the right doctors has made a huge difference in our lives.
Pediatric lyme patients are the most heartbreaking, in some ways~some adults can’t even tell the medical folks what is wrong!! A sudden change of personality~usually “overnight” is used to describe it~towards anger when a child had been formerly happy~is a hallmark sign for Pediatric Lyme. They are sometimes symptomatic for so long they don’t even know anything is “wrong”, that is just how life is for them.
Regarding the “bullseye rash”: while it is in fact diagnostic of Lyme Disease (no other pathogen causes that distinctive pattern), unfortunately fewer than 50% of people infected actually get the rash (aka erythra migrans). They will either get a plain rash, or sometimes no rash at all.
Edit: Oops this was meant to be it’s own comment not a reply!
I remember hearing about the case of a Winnipeg woman for whom it took six years for doctors to figure out she had Lyme Disease. I think misdiagnosis is quite common.
A friend of mine became mysteriously ill while we were in University and desperately tried to find out what was wrong with her. She couldn’t get any answers from her Doctor, despite having all kinds of tests and when she herself brought up the possibility of Lyme disease, was completely dismissed. He told her it was impossible for it to be Lyme because of where she lived. Eventually, her Doctor told her that he was referring her to a psychiatrist because her problems were obviously in her head. She was crushed. She did eventually find a physician who took her seriously and was properly diagnosed, but she went through hell and has some permanent health issues to this day. She lost an entire year of school and was made to feel like she was somehow mentally unstable and making up her symptoms. It was awful to watch her suffer, I can’t stand Avril Lavigne, but the more awareness that can be raised about Lyme disease, the better, so good for her for talking about her experiences.
A dear friend of mine was misdiagnosed with depression after she got Lyme for the second time. (It’s easy to misdiagnose because the blood test has to be done when the levels are high and they fluctuate). She was so sick and discouraged that she couldn’t advocate for herself but luckily had her sister with her. “You are aware that her husband is an attorney?” Boom – antibiotics, treatment, recovery, back to work.
So sad. The same thing happened to Kathleen Hanna if Bikini Kill. She discusses it in the doc The Punk Singer.
I don’t think, unfortunately it’s due to incompetence though… It’s more to do with ego and over specialization. Doctors spend 10 years in school to study the big toe or the human nostril and if something is happening an inch to the left then they are blind to it.
GPs and family doctors also miss it, but it’s true about specialists who see only twigs, not even branches or trees, let alone the forest.
Uhhh no. It has more to do with the fact that doctors in certain regions aren’t used to seeing Lyme disease. I live in Connecticut and have had multiple family friends get Lyme disease, and infectious disease specialists have always caught it. Lyme is very common here and as the medical community learns more about it, it is caught earlier.
Doctors aren’t magical wizards. They’re imperfect people who can miss diagnoses. I’m sure some are arrogant, but I think most truly want to find the correct diagnosis.
I actually disagree. Doctors ARE egotistical and tunnel-visioned, to a frightening degree considering their patients can present the same illnesses with varying symptoms and degrees of severity. And there is NO reason for them not to know about Lyme disease as an infectious disease regardless.
I got mono two years ago, for the first time in my life, at the age of 40. My regular doctor was out of town and I was seen by the head of the practice, and this is at a major institution. I TOLD her I had been exposed to someone with mono, and she said “that’s something young people get.” Did not even care when I told her that I was exposed by a 53-year-old who was sick. She diagnosed me with sleep apnea.
It took five weeks and an immunologist to properly diagnose me. And because in that five weeks, I kept getting told nothing was wrong, I pushed myself to the limit to function as normally as possible. My recovery took more than six months. If the first doctor had done a simple spot test, I would have been on bed rest and going through a proper recovery period. Delayed diagnosis can completely derail things even worse than they already are.
Kudos to Avril for speaking out. Her story isn’t just about Lyme disease. It’s a cautionary tale: if your doctor refuses to listen to you and you’re not getting better, find a better doctor.
I agree.
Bah, this sh*t is just the same anywhere, mytbean. I kinda agree with you, though we can’t rule lack of specific knowledge out. I had a nasty nail condition a while back, and no dermatologist friggin’ knew how to handle it, I was so desperate. Where I come from, they are trained to handle mainly vanity-related issues. There is truly nothing wrong with that, but when we do have something serious they are baffled 🙁
I still don’t understand what Lyme disease is. Can someone explain the symptoms to me? Poor Avril tho.
A bacterial disease carried by infected deer ticks. DR GOOGLE can tell you more because the list is long. Try sites like NIH or Mayo Clinic.
I´ve had it years ago, and it´s AWFUL!
I Went through the same things as Avril,
until a FEMALE polish doctor ran a lyme
blood check on me and came up with the correct
diagnosis. After antibiotics I got a full recovery.
But it did take a lot of time and PAIN.
Anyway, it´s good to know there is a happy
ending to this!
I, too, have an autoimmune disease and it completely sucks. It took 5 years of me begging (my female Dr.) for testing which I finally had to switch doctors to get. My Dr. now is a rock star – I’m 15 months into treatment and probably 75% better. At my lowest I was just like Avril – barely able to make it out of bed, back in bed for the night at 4:00. It was awful. I’m so glad she’s gotten diagnosed and is spreading the word. So many people suffer in silence!!!
And, frequently, the onset is so gradual you don’t even realize there’s something wrong until all the sudden you can barely carry the groceries or stay awake for more than an hour. Then you think, “How did this happen? How did I get here?”
Lyme disease is a bacterial infection, not an autoimmune disease. But I certainly feel your pain and frustration and am glad you are in recovery!
Yes, I know that – my daughter, thankfully, was treated for Lyme when she presented with a bullseye rash.
Lyme symptoms mimic that of autoimmune disorders, however. I know the treatment is different, but the symptoms are the same.
The actual Lyme spirochete is in fact a bacteria, but the different co-infections vary from virus to parasites to mold toxins. There has been a lot of discussion between Lyme literate MD’s about it being an underlying factor in MANY autoimmune disorders~since it hides in cells, burrows into tissues where serum samples aren’t diagnostic, and “mimics” so many other diseases it is EXTREMELY difficult to diagnose accurately and timely. While it isn’t an autoimmune disorder per se it CREATES autoimmune conditions since when the body CAN see the disease, it attacks it where it is~in the cells and connective tissues. Any time someone wanders around from diagnosis to diagnosis, you better check for LD AND the co-infections as soon as possible.
Add me to the list of other commenters with Lyme. I was lucky that I live in a wooded area where Lyme is common and was diagnosed quickly. But that month before I was treated was horrible. I was horribly moody and depressed to the point where my dad asked me if I needed to see a therapist. I was always in pain, exhausted, and sullen. It wasn’t until I started blacking out for no reason that I am and parents realized I was legitimately sick and took me to the doctor. I also ended up with Bells Palsy for a month which was not fun to deal with as a 16 year old girl going through lifeguard training. I feel for everyone who has to deal with Lyme.
I’ve talked about my husband’s struggle before, and I felt for you when you wrote about how awful you felt. My husband said it hurt to smile, so he never did. This is a man who broke his arm out sailing by himself and got himself home and docked, which took three hours and was laughing about it. His first three doctors told him he was crazy. It was a hellish time, and I’m there with you – I feel so much for anyone going through this. I’ve said it before, but don’t mess around. Time is critical. If your doctor implies that you are being dramatic or overreacting, he or she doesn’t know what they are talking about. Please go to an infectious disease specialist right away.
I feel you, really.
I have a thyroid condition (Hello Hashimoto!) and before the right diagnosis I was a mess.
I’ve spent the worst year of my life feeling depressed, always tired, with the doctors telling me I was just “exshausted”, or I was hypocondriac, while I was telling them that there was something wrong with me, but I got the “it’s all in your head”… it turned out my head was perfectly fine. But it was a nightmare, seriously.
This is what I have! (See above comment) It can be such a nightmare to have these “invisible” diseases!
Had a neighbor who was bounced from head doctor to head doctor and given psychiatric meds when all the time it was her thyroid. They removed it, gave her synthetic hormone, and all was well. But that period of time bouncing around? Truly unpleasant, unfair and unwarranted.
I know its not the same thing, but i had mono towards the end of my sophomore year of college but didnt show symptoms until i was home for the summer and my parents and doctors accused me of just being lazy. My dad told me I needed just more manual work to ” get my bones going” and it was literally the most soul sucking experience of my life because i had no energy, terrible headaches and could not mentally focus on anything for the entire summer…I literally felt like my brain was mush.. It was only when my college roommate received a mono diagnosis that i decided to look into it .
Lyme sounds terrible and while Avril grates on me most of the time, i really feel for her on this.
What a shame. When someone is that age and especially in a shared living situation, any doctor should know to look for mono/Epstein-Barr as a possible diagnosis. This is not rocket science and it’s just a simple blood test, what’s the problem looking?
I’m a type one diabetic. Diagnosed at age 1. I so sick and my parents kept taking me to Dr’s only to be told I had the flu since it was flu season. It took me passing out, going into a coma, being life flighted to Pittsburgh, and my Dad getting accused of beating me before they figured out I was a diabetic!
Keep in mind, y’all, that there is a vaccine for Lyme. There is a canine version that goes to dogs, but anti-vaxxers pushed the human version to be banned. You don’t get to be healthy because of uneducated morons.
It wasn’t a good vaccine. And, at least in my practice, adults think vaccines are only for children. Adults are notoriously poor at getting boosters, making this vaccine useless.
I know I’m going to get a lot of hate for this but I seriously don’t understand how someone can get Lyme disease and not have any idea. A tick has to have its head embedded in you for over 24 hours, have a blood meal and be engorged to get Lyme disease. An engorged tick is about the size of a small grape and the blood meal can take 36-48 hours. How in this span of time does a person not realize they have a tick on them, that’s that big and for that long?? I just don’t get it…
A LOT of people get Lyme disease and don’t know. And they could have possibly brushed the tick off and not noticed, or they could have known that it was a tick but not thought about Lyme disease.
I asked myself the very same question: How could I not discover the tick?
But you see, they come in different stages, the ones infecting you aren´t
in the stage you described. They are much, much smaller. The size of a
pin head, actually. And if you have a lot of marks and stuff on your skin, like me,
you don´t notice. Besides they like to crawl up and hide in the most peculiar
places. Even after their meal, they aren´t SO much bigger, So they are easily
overlooked!
No hate, Lala, just a request that you not spread misinformation. While it is true that Lyme Disease usually requires the long attachment period, that isn’t an absolute. Also, most humans get the disease by being bitten by immature, or nymph, ticks–which are TINY!
And even an adult, engorged tick I would never describe as the size of a grape. In any case, people looking for facts should try the CDC. It points out the tick species that we humans catch Lyme from, and has excellent advice for prevention. Also, don’t assume the West Coast is safe. Less frequently occurring, yes, but that just means that doctors here are less likely to recognize the disease when it presents.
http://www.cdc.gov/lyme/transmission/
I agree and yet I did. I never found a tick and never had the tell-tale bullseye rash. But I lived in a wooded area and spent all my free time as a kid playing outside. It’s very possible that I got a tick, never noticed (not washing enough or thoroughly) and it went undetected. They love to burrow into warm and hairy areas so I could have been bitten on my scalp and never found it. I wasn’t exactly the type to brush my hair and care about how I looked at the age. Ticks are nasty, nasty things.
Lala, that unfortunately is one of THE biggest and most dangerous pieces of medical misinformation about LD there is~a tick can infect/transmit multiple diseases AS SOON AS IT BITES. The saliva itself contains the organisms that cause diseases, and those are transmittable IMMEDIATELY.
Please get educated the information in your question is even incorrect
My daughter had a tick bite on the back of her neck, no tick when we discovered it, but many ticks on her clothes. She hadn’t felt it.
Not trying to be rude here, but how can Avril say she’s going to be 100% recovered? Given the time period she’s talking about, she missed the initial treatment window and should have permanent damage done.
She is young, and her immune system can be rebuilt. Unfortunately, you can get it multiple times, since there is no resistance built up to it by your body. Depending on what her co-infections are, and how quickly and thoroughly THOSE are being addressed, will make a HUGE difference in her outcome. Since ticks are nature’s dirty needles, multiple infections~bacterial, viral, parasitical~can be transmitted AS SOON AS THE TICK BITES.
Yes youth is on her side. Her immune system can also turn on her own body depending on many factors. I hope she gets an immune system back that functions and has a full recovery.
You are not rude. Her saying she will have 100% recovery is maybe her way of coping.
Lyme sucks. I have not had it myself, but have seen one good friend basically lose several years of her life to it and then pretty much disappear off the radar–I don’t know if she’s managed to recover or not because she moved out of state and eventually stopped answering all phone calls, email, etc. (to multiple friends, not just me).
I one time had something that looked like it might be a bullseye and went to the doctor. First doctor looked at it and dismissed it as a spider bite, even though I told him I had been out in the woods regularly in an area where ticks were a possibility. Fortunately the rash developed into a definite bullseye over the weekend, so I went in again on Monday and was immediately given a course of antibiotics. For whatever reason, there seemed (at the time) to be a lot of reluctance to acknowledge that Lyme might have come to our area. I had outdoors locally but also up north within the past month or so, and so the doctor said I must have picked it up out of state. BUT, our family dog had gotten Lyme several years earlier and she hadn’t even been out of the neighborhood, let alone the state! I live on the west coast now, where Lyme is pretty much a non-issue, and whenever I think about moving back east, I’ll admit the possibility of getting Lyme is something that gives me serious pause. I enjoy being able to go for a hike without a bunch of tucked-layers, bug spray, and permethrin treated everything, you know?
Lyme has been found in EVERY state, city, metropolitan area, and county in the USA. It is epidemic not just here, but also found in EVERY country~even all the Island nations have it~in the entire world. I have a patient who was bitten~found the tick and everything~right here in the Houston Galleria area.
Lyme has been found in Canada, including an infestation in Eastern Ontario. Climate change is also allowing certain diseases and carriers to spread into new areas.
I think Debbie Gibson also talked about having Lyme disease.
One of the most important symptoms of Lyme Disease~the neuropsychiatric impacts~make it very difficult to distinguish from other mental disorders. Yes, many chronic LD patients ARE crazy~as a result of the impacts of the disease. In addition to the sudden anger and depression that are mental symptoms of the disease, there is the unacknowledged issue of fighting for a diagnosis that 99% of the medical community is in absolute ignorance of. The CDC guidelines for LD are criminally WRONG regarding the actual disease~they are going from information gleaned from a study that has been repeatedly debunked scientifically, and was pushed through anyway by the Infectious Diseases Society of America. Understandably, when the “experts” have it so wrong of course that will mean that the people that get their information from that agency also get it wrong. ILADS.org is one source of accurate information~the MD’s and other medical pros almost to a professional either HAVE the disease themselves, or have a family member that has it, and since they haven’t found any good answers in the current treatment paradigms are doing the research and coming up with treatment options to combat it. It is an insidious, multi systemic, painful, long term/chronic series of illnesses from which to recover.
Daryl Hall has given good interviews about Lyme because he is educated.
I loved Avril before and now I love her even more for being so open and so real about what was going on with her. You can tell by her emotional interview that this has been hell for her. Poor thing. I’m glad that she is getting the treatment and getting better!
That being said, what’s up with her and that husband of hers? Are they split? Anyone know? I’m just curious why he has not been mentioned in any of the articles or anything I’ve read. You’d think she would make reference to him being by her side or whatever…
Folks who are fighting this: check out the Claritin study, and also the Salt/Vitamin C protocol. I have several patients I am monitoring during this time~LD is one of my specialties. I am a Licensed Acupuncturist living in Houston, TX. There are only 3 truly Lyme literate MD’s here in Houston, and as far as I know I am the only Lyme literate Acupuncturist in the Houston area.
It took awhile for my sister to figure out she had Celiac’s. She was already lactose intolerant but her stomach started killing her again in college. Our pediatrician dismissed it as effects of her dairy allergy. She went to see a gastroenterologist and got tested for Celiac’s and her results were off the charts positive but it took awhile while she researched her symptoms to figure it out.
And Lyme is common all over the world. My dog ended up getting it in our backyard since he kept wandering into the woods where all the deer ticks were.
I Think this says it all, and they didn’t diagnosis it. I miss Dr. House or one like him.
Perhaps the most well-known symptom of Lyme disease is a rash that looks like a bullseye. Scientifically named erythema migrans, this type of rash occurs in 70-80 percent of people infected by a tick bite. The area directly around the tick bite may be red and raised and look like a normal bug bite. The rash often spreads in a circular pattern that’s lighter in the center and darker on the outer ring. However, not everyone who gets Lyme disease gets the target-shaped rash.
Muscle aches, headache, fatigue, and fever are classic signs of early Lyme disease. Symptoms can start at any time between three and 30 days after infection. The incubation period can also lead to confusion about your symptoms. If you don’t remember being bitten, you may think you have the flu and won’t necessarily connect the tick bite and your symptoms.