In late 2004 I got my last flu shot. I say my last, because I will NEVER get another after what happened next.

Shortly after getting the shot, my family and I went on vacation in Florida. I was sick with flu like symptoms the whole time. You know, fever, achiness, etc. I also had some tingling in the palms of my hands, which I was attributing to a fall on my bike. It really wasn’t the best vacation, and when we got home, it was practically Christmas. I was so tired, and felt so weak.

After the first of the year, I attended my karate school’s first class of the year. Now, I’d been going to the same school for over 3 years, I should have known better than to go to the first class of the year. It’s ALWAYS a killer. The next day, I was so sore I could barely walk upright. I held off on karate classes for a couple of days, and then went back for more (torture, that is). This class was different. I felt like I was moving in molasses. I couldn’t jump, I couldn’t run (as hard as I tried). It was awful. I was supposed to be the most senior person in that class, people were supposed to look up to me, but I was fumbling around like I weighed 500 lbs.

I let it go, and continued to go to class. But it only got worse. 3 weeks later, I was visibly limping. I figured it was time to visit the doctor. I saw my GP. She wasn’t overly concerned about the weakness and tingling, but more about the frequent migraines and she ordered an MRI. It came back normal. (I have a history of epilepsy and migraines, so normal is a huge relief.) She also recommended that if the tingling and numbness didn’t improve I see a neurologist. There were none in her group, so I was left on my own to find one. My first thought was to find the guy who treated me for seizures in my teens. I found that he had retired. The next step was to find a list of candidates in Austin. I started with a fairly large clinic in Austin, and chose the guy based on his photograph.

When I saw him, he immediately told me it was some sort of polyneuropathy, but he would have to do tests to find out which one, and how to treat it. His first course of action was to order a DNA analysis to determine if it was one of the hereditary neuropathies. It took 3 weeks to get the blood drawn and another six before the analysis was done. When he received the results, he called to tell me I had none of the *known* markers for hereditary neuropathies.

Ok, think about that for a minute. Known markers? If it’s not known, how do you know there are others?

Despite my confusion over this, he told me there was nothing he could do, and that it would probably progress slowly. At this I jumped. I was already limping and dropping my feet regularly. I was falling often. I could no longer run, jump, kick, or jog, and now walking was starting to look iffy. I was even having trouble opening jars and lifting my (then) 2 year old. I told him this. He was very audibly alarmed and told me to come in immediately.

When I got there the motor tests that he did showed I was MUCH weaker. I couldn’t even walk on my tiptoes. I couldn’t even STAND on my tiptoes.

He changed his diagnosis. He asked me if I’d been sick, or had a flu shot before these symptoms appeared. I confirmed both. He came back with “Guillian-Barre“. Now, I knew all about this syndrome, I’d been reading for weeks about nerve damage and neuropathies and possible causes. I nodded. He told me the course of action was to give me a weeks worth of IVIg. This involves sitting in a chair hooked to an IV for 8-10 hours per day.

After the first day of treatment, I was visibly better. My limp was better. I felt better. Over the next few weeks I got better, and then worse. I had to have a second round of IVIg. Six weeks after that, I was bad again. I switched doctors. The new doctor told me that he didn’t think it was your typical Guillian-Barre, that it came on too slowly, and was lasting too long. But he thought it was a related condition called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). This is basically the same as Guillian-Barre, but in a more mild form, and chronic instead of acute. More than likely, I would be having battles with it for the rest of my life.

Both Guillian-Barre and CIDP are auto-immune disorders. They both cause a person’s immune system to attack the peripheral nerves (nerves other than spine and brain) and remove the myelin sheath surrounding and protecting the nerve. Think of it this way, if your nerves are like electrical wires, and the myelin is the plastic coating around them. If you run electricity through a wire that has been stripped of it’s coating, a portion of the electricity is lost to the air. Some of the noise makes it through, but it’s not full strength. This is exactly what happens to the signals your brain sends to demyelinated nerves. Part of it is lost to the surrounding tissues because the protective, insulation is gone.

The difference is, that Guillian-Barre often progresses extremely quickly (like in 4-5 days) and that it often causes respiratory complications that lead to breathing tubes and many many months of rehabilitation.

So, getting the flu shot in late 2004 not only gave me the flu (despite what the CDC says about that being impossible) it gave me the wonderful gift of lifelong nerve damage. Granted, if the first doctor hadn’t farted around for 8+ weeks, I might not have had permanent damage, but still, thanks for the warning!

The CDC does mention on thier website that Guillian-Barre is a possible side effect. But they down play the severity of the disease. On the other hand the CDC also says on their website that the flu shot should be had by people who are at high risk for complications from the flu. Those people are infants, the elderly, and those with compromised immune systems. Um, let’s see, that’s not your average 30 year old joe on the street.

It enrages me to hear commercials telling people that they MUST get a flu shot. Bullshit. It pisses me off that employers post signs around the office about Flu Shot 101, and I’m sure they didn’t mention the possibility of Guillian-Barre or other (more long term) auto-immune diseases. (I’ll have to find someone who went and see what they actually said).

I’ll also tell you that I’ve not had a flu shot since 2004, and I haven’t had the flu since then. My husband, who is mandated to get a flu shot by the military, gets the flu every year. In fact, he’s getting over it as I write this.

Bottom line, do your research. Make an informed decision about that immunization before you get it.

Oh and PS — seems that the new HPV vaccination, Guardasil, is causing Guillian-Barre symptoms as well. There have already been 8 deaths in the US related to the injection. Just something to think about.

Comments

29 Responses to “The flu ep(idem)ic”

  1. Marissa (aka mLee) on November 6th, 2007 8:55 am

    I’m sorry this happened to you and I hope your symptoms are easing.

    Every year my grandmother asks me if I am getting the flu shot and every year I say no. If getting the flu isn’t something that is a serious risk to you life like it can be for the elderly I don’t see the point.

    My daughter won’t be getting the Chicken Pox vaccine for sure. And HPV, glad we have a long time to see how that plays out. The current girls getting it are total guinea pigs, very sad.

  2. Annette on November 6th, 2007 9:11 am

    Wow, sure hope you get better soon.
    I had a phnemonia shot that went into my vein and caused a bacteria infection. After tons of an antibiotic I developed the shingles. Need I go on! Oh by the way…I have MS! The shot I take weekly gives me flu like symptons for 24-48 hours. Sucks to be me.

  3. shoofly on November 6th, 2007 9:38 am

    Oh my, I’m so sorry this happened to you, and so glad you’ve written about it. Everyone raves on and on about flu shots, I had no idea how dangerous they really are.

  4. megan (muttsywonder) on November 6th, 2007 9:49 am

    What a horrible thing! I’m so sorry this happened to you, and I am also shocked that they don’t mention those possible risks– awful!

  5. W. J. St. Christopher on November 6th, 2007 11:19 am

    The flu shot has always seemed “iffy” to me. I NEVER have one, and I haven’t had the flu since the late ’70s.

    Being chronically and severely asthmatic, I’m on the “must take” list and my doctors have always pressed me to do so. I’ve refused — mostly on the “if it ain’t broke, don’t fix it” theory.

    I would never tell anyone else they shouldn’t take a flu shot, but my medical history validates my personal choice on the matter. I do worry about catching flu — I’ve known asthmatics who’ve died from it — but, if I haven’t had it in nearly 30 years …

    I’m so sorry you’ve had to suffer through all this.

  6. Kate Black on November 6th, 2007 5:03 pm

    Wow. That’s horrific. I’m so sorry that you were mislead about the potential side effects of the flu shot and that you’ve suffered this.

    Thank you for sharing your story. I’ll definitely refer others here.

  7. Claire on November 6th, 2007 5:36 pm

    Geez. Thank you for sharing your experience with us! These things are pushed on all of us, and I’m glad to see there’s a basis for my suspicion of them. They just don’t seem right.

  8. drew on November 8th, 2007 10:45 am

    Never had the flu, never had a flu shot. It’s a way for the Pharmecutical companies to make money, nothing more, nothing less. Most healthy people and adults do not need a flu shot ever. Most people I know who get a flu shot get the flu. Most of the strands used in a flu shot were from the previous year or years, with the strands currently in season being different and not affected by the flu shot they giving out. The body is the best defense against the flu and colds, eat healthy, avoid touching areas where others touch, etc, you can stay healthy without having to get these schemes to think people need these shots so the corporations producing them make millions off of you.

  9. Karen on November 13th, 2007 3:04 pm

    This year I had flu that turned into Pnuemonia, my lung collapsed, it was very serious. I’m only young (in my late twenties), I’m having the flu shot this year.

  10. Dan Walsh on November 20th, 2007 8:34 pm

    I’m a law student, so reading your situation makes me think of something you might want to do about it. There’s a claim of action, accepted in most jurisdictions, called “loss of chance” – when a doc lowers your chances of recovery through negligent acts, even if you might not have recovered anyhow, you can sue for the percentage of that chance to recover that you ‘lost’. Damages are limited to what percentage chance you lost, but it would probably still be in your best interest to consult someone. Also, if you had a better than 50% chance of recovery before his screw-up, you can sue for plain old malpractice instead. Anyway, just a thought, sorry about your situation.

  11. mrp on November 20th, 2007 8:40 pm

    I gave up on flu shots around 1997 because I noticed every couple years when I would get the shot, I would catch the flu. I think it’s just a huge scam.

  12. Kevin on November 20th, 2007 9:52 pm

    Firstly , I’m very sorry that this has happened to you. But I also need to say that your statements will/are dissuading the wide majority of people who are on the fence or whom regularly get the flu and who could actually see benefit from getting vacinated.

    If the flu vaccine was overwhelmingly dangerous for the majority of people it would not be in use , instead it is like many other drugs on the market that do carry side effects for a small percentage of society ( while I’m not a pharmacist, I would think around 1%) but for everyone else it does make a difference in bettering the lives of others.

    Myself personally am experiencing a nasty bout of the flu and wish that I had taken the chance of having the flu shot , and will be getting one next year. And I know with any medication I take ( or basically everything I do in life!) there is some level of risk with it, and unless there is hard statistical evidence that there is more risk than reward in doing so this article won’t change my mind.

  13. Jeannette on November 21st, 2007 6:28 am

    I didn’t mean it to dissuade EVERYONE. But merely look at who you are and if you are in a high risk category. There have often been shortages of the flu vaccine and perhaps instead of everyone clamoring for one, the healthy young people should save the shots for those who are at MORE risk from complications from the flu.

  14. Brian on November 21st, 2007 10:35 pm

    Your story struck home and reminded me of the same year. I got the 2004 flu shot. Not long after I developed trigeminal neuralgia, aka the suicide disease. It kept me delibitated for 4-6 weeks. The doctors had no idea what happened or why. Then, slowly, it faded. No more flu shots for me.

  15. Flu Flack : I’m not a geek, but I play one in real life on November 24th, 2007 5:19 pm

    [...] been getting a lot of negative responses to my flu post. According to these readers, I’m pushing people who are on the fence about getting the shot [...]

  16. dmiessler.com | Why You Probably Shouldn’t Get a Flu Shot on November 26th, 2007 10:32 am

    [...] that’s not enough for you, here’s a story of what happened to a perfectly healthy woman who got the shot. Not [...]

  17. The Flu Vaccine and Guillian-Barre » PixelRN on November 28th, 2007 2:02 pm

    [...] sick. This week I am asking if the flu shot can give you Guillian-Barre syndrome (GBS). Here is a scary story about someone who suspects she got Guillian-Barre from a flu [...]

  18. Ria on November 28th, 2007 2:49 pm

    Thank you for commenting on my post regarding the flu shot and sharing your story. I agree with you… people need to know and make informed decisions.

    I’m sure that your story will drive home this point.

  19. kirsten on November 28th, 2007 9:22 pm

    I’m so sorry this happened to you. My father had the same experience as you in 1998. He is now in his sixties, and after the treatment he didn’t experience any more degeneration. He still has some difficulty on the tennis court.

    Interestingly when I give my history to my childs allergist for her food allergies they point to his history of autoimmune disease. (triggered by the flu shot does not figure into the equation, nor does my childs immunizations – which I think were in some way related to the timing of her vaccinations…..that’s a whole different story.)

    I hope you are in remission – completely!

    I am going to send your post to him – I know at the time he did an experimental treatment. It might just be mainstream now (gamma globulin ring a bell – is that IvIg?)

  20. Sarah on December 10th, 2007 8:27 pm

    I received the flu shot,I am at high risk (emphazima), I am 55. Received the shot on Thursday or Friday and on Saturday morning woke up with the worst headache that lasted a week and one trip to urgent care. They gave me arthritis pain meds and a week later headache was gone. But!!! Then came the pain in my face. That was November 10th and another trip to Urgent care. Now they say it is Trigeminal Nuralgia. Have just done an MRI and will get the results tomorrow. I also think this started with the flu shot. I have gotten one each year with the doctors advice to get it. I usually am healthy all year long. If this is the result from the shot I will not be getting any more of them. This is the worst pain in the world. Having children is easier than this pain. I can see why they call it the suicide pain. It has been in the lower face area and now I am feeling it in the other side of my face. I hope and pray it is short lived. I cannot go through much more of this. They now have me on Nurontin and Vicadin and I am not a believer in medications. I do have to take thryoid medications. I almost died from that before they found out mine had quit. I do feel for you. I think the doctors know more than they will tell the general public. They do make a lot of money for the drugs they give to the public.
    Maybe the old women that use to use natural healing was always better.
    May you recover and prayers be with you.

  21. Rachael on December 11th, 2007 8:05 pm

    The day after i got my flu shot 6 days ago i started feeling sick after about a day, i have a really bad headache that feels like a migraine and and i feel very tired and could not walk around for about for about 3 days because i felt like i would fall over and i feel a slight weakness on the left side of my body. Im feeling a little better now, i dont feel as dizzy and weak as i did but i think its just because i started taking some medicine for the chills and muscle pain that i had.
    I hope i dont have Guillian-Barre. I got a ct scan yesterday because of my headaches, but i dont know the results until 3 days from now.
    Did you have these kind of symptoms too?

    Im not sure if i’ll be on this site again so if you have the time you could email me rachaelanne15@hotmail.com thanks:)

  22. Mickey on December 13th, 2007 1:33 pm

    Hi. My name is Mickey.I am currently in highschool and is doing a report on guillian-barre. My oldest cousin got guillian barre. I just wanted to say I’m very sorry about what happened to you. I’m glad you made it through that. I am terribly sorry to ask but if you have any more information about guillian-barre I would to have it. I wish you the best.

  23. The 'Knoll on December 15th, 2007 8:23 pm

    That’s a great post, I’m sorry for what you went through. I did quite a bit of research on flu shots before I would consent to give one to my toddler . After what I found, she never did and probably never will get one.
    I blogged about my findings
    here

  24. Writer’s block : I’m not a geek, but I play one in real life on January 23rd, 2008 1:54 pm

    [...] photos. And there is yet another topic. The tremor and the other permanent side effects of having Guillian-Barre. And how about the depression that arises from those [...]

  25. Carla Colemn on March 2nd, 2008 5:29 pm

    I just read your scary story about your battle with Guillian-Barre syndrome. I have chronic migraines which I’ve read involves major systems of the body, especially the nervous system. The doctors label migraines as a disease. Do you think that because you had chronic migraines that this might have been a major contributing factor in contracting Guillian-Barrs Syndome?

    Carla Coleman

  26. Lisa Mazzuca on March 12th, 2008 11:40 am

    The issue of childhood vaccinations is important to the both of us.

    I’ve just launched a new site http://njvaccinationchoice.org for the New Jersey Coalition for Vaccination Choice. We are working to repeal 4 new vaccine mandates for Sept. 2008 and to pass a NJ law for Conscientious Exemption from Mandatory Vaccinations.

    Please consider adding a link to this site to the home page of your blog – this would really help to spread the word about this cause by increasing our search engine rankings as well as showing other people interested in this issue where to go to learn more and make a difference.

    Just add link to http://njvaccinationchoice.org or get link code or graphics from http://njvaccinationchoice.org/linktous.html

    Thank you so much! If you have any questions contact me, Lisa Mazzuca at webmaster@njvaccinationchoice.org

  27. Wendy Lee on April 2nd, 2008 10:30 am

    Hi,

    The first and last time I got a flu shot was when I was working at MUSC in Charleston in 1990. I remember it vividly. My husband and I were just a few days away from moving from SC to Ohio, and my new daughter was just a few months old. I got a flu shot at work because a co-worker encouraged me to and they were free. Two days after I got the flu shot, I ended up in the ER because I had a seizure. I had never before had a history of seizures and in the following years every time I had a case of the flu, I would have seizure. I sought help from a neurologist and mentioned the flu shot/flu connection but he dismissed that as a possibility.

    I have had migraines all my life, and when I finally couldn’t deal with the constant pain any more (in my early thirties), and found a neurologist that actually cared about the seizures. She immediately put me on an anti-seizure medication that was also shown to be effective in helping prevent the occurrence of migraines. Since then, I have not had another seizure, and the daily incidences of migraines have been decreased, but I am now on daily medications for the rest of my life, and at the mercy of insurance companies for supplies of medications to deal with breakthrough migraines. Plus there are other side effects.

    I’ve known about thimerosal since my college days (preceding my working at MUSC) since I’ve worn contact lenses since I was in grade school and I’ve had reaction to the solutions containing thimerosal. I was appalled to find out that the solutions used to store and clean a lens that was to go in my eye contained a mercury solution. And now I’m finding out that the vaccinations and the flu shot that changed my life contains/contained it.

    I think I may have found the cause of all my health problems.

    I think my new slogan is going to be “Just Say No to Flu Shots.”

  28. K SPILLMAN on August 27th, 2009 10:29 am

    FOR YEARS (10+), I’VE ALWAYS RECEIVED THE FLU SHOT BECAUSE I WORK IN THE HEALTHCARE FIELD AND CAN OBTAIN IT FOR NO CHARGE. TODAY I GOT THE FLU SHOT AND FOR THE FIRST TIME, I’VE HAD AN ALLERGIC REACTION.
    I AM USUALLY WEARY OF IMMUNIZATIONS/SHOTS BECAUSE I’VE ALWAYS FELT THAT THERE WAS SOMETHING NOT QUITE RIGHT ABOUT THEM BUT BECAUSE I WORK IN THE HEALTHCARE FIELD (NOT TO MENTION IT WAS A FREE IMM/SHOT DUE TO MY EMPLOYER PAYING FOR IT) AND AM AROUND SICK PEOPLE CONSTANTLY, I’D TAKE ADVANTAGE OF IT.
    I AM A HEALTH EDUCATOR AND FOUND THINGS OUT TODAY THAT I NEVER KNEW BEFORE AND WISH THAT I WOULD HAVE KNOWN. SHOULD I HAVE KNOWN, I WOULD HAVE STOPPED MANY, MANY, MANY YEARS AGO.
    I AM GOING TO PRINT MUCH OF THIS INFO OUT AND KEEP TRACK OF MY SYMPTOMS AND THE WAY I FEEL FOR THE NEXT MONTH OR MORE.
    I FEEL WE ARE HUMAN GUINEA PIGS.

  29. Colin on September 19th, 2009 5:37 pm

    I got a flu shot Wednesday 3PM, and now it’s Saturday 7:30PM and I still have basically a mild common cold. Started with a sore throat, fatigue, sniffles, etc. I rarely get sick and I even remember using the hospital-grade hand sanitizer on my way out of the office. I don’t think it’s a coincidence, and they probably won’t do studies to prove the flu shot actually does cause the flu and it’s bullshit. I’m never getting one again. Actually I’m going to get the H1N1 vaccine to see if it happens again, then if it does, tear my doctor a new asshole.

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