How Meningitis Nearly Killed Me, Then Changed My Life for the Better
Jun 26, 2014

Andy and his roommate visit Gooseberry Falls just days before he falls ill.

Andy and his roommate visit Gooseberry Falls during spring break of his senior year of college.  This is one of the last pictures he took prior to contracting meningitis.

By Andy Marso

I occasionally look at pictures of myself on a spring break trip in 2004, about a month before I almost died of a meningococcal infection.

I was a senior at the University of Kansas at the time and I brought my Brazilian roommate home to show him what spring break is like in Minnesota. There are pictures of him, with his shoulders hunched against the cold, and me and another friend in front of a frozen Gooseberry Falls, the ice and snow stubbornly refusing to cede the ground it had held for months just because the calendar had turned to March.

They are the last pictures I have been able to find in which I still have four normal limbs.  They are the last pictures of a different Andy Marso, one who was carefree and naïve and didn’t realize how quickly he could lose the life he loved.

Sometimes, when I look at those pictures, there are things I want to tell that Andy.

MarsoBurnUnitArmResizedI want to tell him to turn and run up that frozen waterfall, to leap nimbly from one rock to the next, because some day he won’t be able to.

I want to tell him to flex those fingers poking out the sleeves of his fleece hoodie and marvel at all of the tiny, delicate muscles, nerves and joints that can move in ways that no machine can fully duplicate.

I want to tell him about Neisseria meningitides, the tiny bacterium that will soon invade his bloodstream.

I want to tell him that within weeks he will go to bed thinking he has the flu and by the next night he will be in intensive care, in a medically-induced coma, with his organs failing and his parents praying he will live.

MarsoBurnUnitLegsI want to warn him that when he wakes up from that coma, he will face suffering worse than any he has ever imagined for himself. That for months, medical professionals searching for living, bleeding tissue will slice layer after layer of dead flesh from his arms and legs until his bones and tendons are exposed, but they will be unable to save his toes and most of his fingers.

I want to tell him that in losing that, he will gain new purpose.

That he will live out a dream by publishing a book called “Worth the Pain: How Meningitis Nearly Killed Me: Then Changed My Life for the Better.”

That while still in a wheelchair and with bandaged hands he will hold a news conference calling for Kansas colleges to require the meningitis vaccine and he will feel as if he’s exactly where he is supposed to be, doing exactly what he is supposed to do to make the world a better place.

I want to tell him that within a year the University of Kansas will begin requiring the vaccine for on-campus students and soon all the state’s public schools will follow suit.

I want to tell him that 10 years after he survives meningitis he will sit in front of Missouri legislators and tell them his story and they, too, will pass a bill requiring meningitis vaccination for students who live on campus.

That is where we sit today.

Andy Marso pictured with his friend Matt Bellomo, another meningitis survivor.

Andy Marso pictured with his friend Matt Bellomo, another meningitis survivor.

The bill is on Gov. Jay Nixon’s desk, awaiting his signature.  It would go into effect in the 2015-16 school year.  By then it is likely that the U.S. Food and Drug Administration will have approved a new vaccine for serogroup B meningitis, the type I had. The shot is already in use in Australia, Canada and Great Britain.  It’s the missing piece to a public health puzzle, with the current vaccines effective against the other four main serogroups that cause infections that kill, maim and leave victims with brain damage, hearing loss and vision loss.

Some day soon, if we have the political will and the personal responsibility, we will have the tools to make bacterial meningitis go the way of polio and other diseases that no longer leave grieving parents in their wake.

When I look at those photos of the old Andy Marso, with his 10 fingers and his blithe smile, I would like to tell him that if he soldiers on through all of the pain he’s about to endure, all of the late nights worrying about his future and all of the frustrating days learning to be independent again, that he can play some small role in the big fight against a terrible disease.

I think he would be scared, but I hope he would still be up for the journey.

Andy Marso is an award-winning journalist with the Topeka Capital-Journal. He has a bachelor’s degree in journalism from the University of Kansas, a master’s degree in public affairs journalism from the University of Maryland and has written for the Washington Post and other publications in Kansas and his home state of Minnesota. His memoir, “Worth the Pain: How Meningitis Nearly Killed Me — Then Changed My Life for the Better” was published in 2013.  You can follow Andy on Twitter @andymarso.


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31 responses to “How Meningitis Nearly Killed Me, Then Changed My Life for the Better”

  1. dingo199 says:

    “…changed my life for the better”
    This will be used by antivaxers to claim that meningitis is a good thing to get – very healthy for you.
    (Cia Parker springs to mind)

  2. […] health practices.   On the flip side we also hear stories about people like Andy Marso, a passionate meningitis survivor who has been instrumental in advocating for state legislation that will help protect college students from a devastating disease that almost cost him his life. […]

  3. Delia says:

    Cia often says that the formerly universal childhood diseases are good for healthy, well-nourished children to get (if they’re well-nursed and get no Tylenol etc.). Malevolent diseases like meningitis are a different story, but breastfeeding protects against it and high-dose intravenous vitamin C treats it effectively. Most adults have achieved immunity to several kinds of meningitis by sub-clinical infection.

  4. Lawrence says:

    @Delia – “she” often says a lot of things that blatantly untrue and misleading…..”she” also has been known to change the story of her own particular situation to align with whatever “anti-vax” flavor of the month is.

    How breastfeeding is supposed to help a college-aged person, I have no idea & high-dose Vitamin C does exactly Zilch for this type of disease…..

    So, using someone who lies & has no actual evidence to support her positions…isn’t exactly a good thing.

  5. Delia says:

    I have not read anything she has said that was either untrue or misleading. Breastfeeding would protect babies and toddlers from the kinds of meningitis the Hib and Prevnar vaccines are meant to prevent, but without the risk of the vaccines. High-dose intravenous vitamin C is extremely effective at treating and curing toxin-mediated diseases like tetanus, diphtheria, and pertussis, sepsis, and menigitis as well.

  6. Chris says:

    I understand one thing that college professors have had trouble with are “helicopter parents.” I can’t imagine what they would think of students who were still being breastfed.

  7. Chris says:

    Delia: “Breastfeeding would protect babies and toddlers from the kinds of meningitis the Hib and Prevnar vaccines are meant to prevent, but without the risk of the vaccines.”

    Since my fully breastfed baby caught the viral disease chicken pox when she was six months old, I have doubts about your claim.

    Please provide PubMed indexed studies by reputable qualified researchers showing that breastfeeding babies and toddlers are effective for those bacterial diseases. Please also provide the PubMed indexed studies by reputable qualified researchers showing the risk from either vaccine is greater than those diseases.

    After my second son was born in 1990 I went to a baby/mom group. There was a mother with a pair of infant twins. She said they were a comfort, but she still missed her first child who died from Hib meningitis. Would you and Cia had told her it was her fault if she did not breastfeed? So seriously, you need to come with with verifiable scientific evidence to support your claim.

  8. Delia says:

    Breastfeeding protects against meningitis, that much is just fact. In general it is protective against disease, but not against all diseases in equal measure. It does not protect against pertussis, for example. I don’t think I’ve read anything about its effect on chickenpox.
    I don’t think either Cia or I think it’s appropriate to blame women for the consequences of not breastfeeding. Many women for different reasons don’t or can’t. Full-time work as well as cultural and social pressures affect many women’s decision. I’m glad that you were able to give your children this gift. It is important, though, to do everything possible to educate women on how important breastfeeding is, both for the best possible nutrition and formation of the immune system, and for protection against every disease the mother has been exposed to (more complete protection against some diseases than others). A child who has been breastfed for an extended period has immunity to Hib meningitis for years after breastfeeding stops, for example. i believe that if more women knew how important it was, how many benefits it gave both the child and the mother (reduces cancer risks for mother too), they would find a way to do it and to continue for a long time, preferably until the child self-weaned.

  9. Lawrence says:

    @Delia – since I’m not going to take the “opinion” of a known liar as gospel of anything, perhaps you’d like to provide some actual scientific citations for your position?

    Especially that antibodies passed from the mother to the baby last for “years” given that all we currently know shows that such immunity is actually of very short duration (months).

  10. Lawrence says:

    Opps…..meant to say “antibodies passed from the mother to the baby DON’T last for “years.”

  11. Chris says:

    Delia: “A child who has been breastfed for an extended period has immunity to Hib meningitis for years after breastfeeding stops, for example.”

    Again: provide the PubMed indexed studies by qualified reputable researchers to support this outrageous claim.

  12. Chris says:

    By the way, it has been documented in that Hib hospitalizations dropped dramatically after 1990. Like here and elsewhere. So what is the most logical reason for the decline of hospital visits due to Hib:

    1. more women are breastfeeding

    2. the Hib vaccine

    Remember, we will only trust your answer if you provide PubMed indexed studies by reputable reliable researchers like the two links I posted.

  13. Delia says:

    I recognize that Hib disease rates have fallen since the vaccine, while peanut allergy rates have skyrocketed as another consequence of it. There have been many other cases of severe reactions to the vaccine as well. Mothers who just want to protect their child without taking that risk in many cases have the option to breastfeed for at least two years and keep him out of day care. If they cannot do either, they should carefully consider what to do, and getting the vaccine is one of their options, if they are willing to take the risk.
    Children are protected from meningitis for years after nursing stops. I am not saying it’s because the maternal antibodies continue in their blood. It may be for reasons we do not yet understand, knowing so little about the immune system at this time.

  14. Chris says:

    Delia: “while peanut allergy rates have skyrocketed as another consequence of it.”

    Hello, Ms. Parker. Spreading lies like this and using sock puppets is why you were banned from this blog.

  15. Delia says:

    Please read Heather Fraser’s book The Peanut Allergy Epidemic for statistics showing this in the US and many other countries.

  16. Delia says:

    Journal of Epidemiology, 1997, 26: 443-450. Breastfeeding protects against Hib meningitis for as long as ten years.

  17. Chris says:

    A book is not a PubMed indexed study, the author is not qualified. Please stop the Parker like typing, and stick to the subject which is meningitis is young adults! And Parker style typing includes not using the proper citations, like including the actual titles.

    The actual citation is:

    Int J Epidemiol. 1997 Apr;26(2):443-50.
    Protective effect of breastfeeding on invasive Haemophilus influenzae infection: a case-control study in Swedish preschool children.

    Some quotes:

    Of the 54 cases there were 29 with meningitis, 16 with epiglottitis and nine with other invasive HI infections. The mean age for cases was 21.6 months; 15.5 months for the meningitis cases and 31.5 months for the epiglottitis cases. The mean age for controls when interviewed was 23.6 months. Among the meningitis and the other invasive cases there was an equal distribution of boys and girls but for the epiglottitis cases there was a predominance of boys, 12 out of 16.

    That’s odd, that small group still got Hib, with over half getting meningitis.

    A potential risk for selection bias was inherent in the design of the study, i.e. the matching for CHC assumed that the centres had different breastfeeding policies.

    And another one, this is the one that claimed a ten year protection.:

    Int J Epidemiol. 1999 Feb;28(1):152-6.
    Protective effect of breastfeeding: an ecologic study of Haemophilus influenzae meningitis and breastfeeding in a Swedish population.

    Table 1 shows the percentage of breastfeeding versus Hib incidence. It is essentially worthless as far as correlation goes. There is none. One years with low breastfeeding rates there were also low levels of Hib, and vice versa. The percentage of breastfeeding past six months was never very high.

    Though in reality, there is no argument that breast feeding is best, and does provide some protection. But it is not a substitute for preventing the disease with a safe vaccine. In fact clicking on the lead author’s name brings up this study:

    Scand J Infect Dis. 1996;28(2):165-9.
    The impact of Haemophilus influenzae type b vaccination in Sweden.

    The abstract says:

    The number of patients with meningitis and bacteremia due to Haemophilus influenzae was studied in Sweden over the period 1987-1994. Conjugated H. influenzae type b vaccines were introduced in Sweden in 1992, and all children born after December 31, 1992, were offered vaccination free of charge. A rapid decline of H. influenzae meningitis and bacteraemia was observed in the autumn of 1993, when the expected peak incidence failed to appear. In the prevaccination period 1987-1991, the average annual incidence (cases/100,000) was 34.4 in children aged 0-4 years. In 1994, the annual incidence fell to 3.5. No significant decline was observed in older children or adults. There was a 92% reduction in the number of meningitis cases and an 83% reduction in cases of bacteraemia. A similar decline was noted in 2 regions which followed different strategies for the introduction of the vaccination programme.

    The vaccine works a whole lot better than just relying on breastfeeding. Also the other two articles were done while there was a vaccine program going on, so they should have included a comparison.

    So unless you can give us any PubMed indexed studies from qualified reputable researchers that any meningitis vaccine causes more harm than the actual diseases that cause meningitis, we will assume it is better to vaccinate.

    Especially college age students.

  18. lilady says:

    I thought CIA Parker was banned from Shot of Prevention for her use of dozens of sock puppets.

    So Professor Parker, how about producing some PubMed citations to reliable websites to back up your not-based-in-science statements.

    BTW, the topic of this article is invasive meningococcal diseases, not HiB and not S.pneumoniae diseases.

  19. Chris says:

    Well, Ms. Parker was a very intelligent woman. Not only was she a lawyer she got a PhD in Spanish. So this means that she does have the ability to spoof ISP addresses. The problem is that does not help with her delusional thoughts. For that she needs to seek help from professionals who have specialized training, if not for herself but for her family.

    “BTW, the topic of this article is invasive meningococcal diseases, not HiB and not S.pneumoniae diseases.”

    Especially in young adults who live in close quarters like military recruits and college students! Unfortunately Ms. Parker going on about breast milk gave me freaky weird thoughts of specialized coffee shops in college towns making breast milk lattes. I blame reading the “In the Barn” story by Anthony Piers which was in one of the Dangerous Visions speculative fiction anthologies.

    • lilady says:

      I’ve had enough dealings with Parker on other science blogs, to know that she has serious emotional problems and she is not getting the professional help she needs.

      The unfortunate thing is that her special needs child is the innocent victim of Parker’s untreated emotional disorders.

  20. Chris says:

    Tell me about it. I am related to someone who was offered out patient treatment in two states, but only if she was willing to go and get it. Apparently no one could force her to go, nor prevent her from going to a homeopath instead.

    Now I can walk up out street to visit her grave because their “help” did not work.

    Please, please, please, Ms Parker… get real help!

  21. Lawrence says:

    @chris – the same old lie about there being peanut oil used in the vaccine manufacturing process (sure, a patent application was filed, but it was never actually used) shows Ms. Parker’s true colors……she lies, misrepresents, and presents information as facts, even after having been shown as false, over and over again.

  22. Delia says:

    Not just Adjuvant 65-4 (65% peanut oil) but many others licensed in the US included peanut oil on their patent applications. Adjuvant 65-4 was never licensed in the US, probably because the arlacel in it caused cancer in lab mice, but was licensed in the UK and used in vaccines. Read Fraser’s book for documention and details. No peanut allergies anywhere until the ’40s, when peanut oil was used to adjuvant penicillin injections. The rest is history.

    • lilady says:

      Just go away Parker. You’ve been busted so many times for using sock puppets and for telling porkies about yourself and your child.

      Get some psychiatric help; if not for yourself then do it for your special needs child who is the innocent victim of your refusal to get that help.

  23. Delia says:

    Do you know the length of breastfeeding in the studies you cited?

  24. Chris says:

    Yes, because I read them. If you go to PubMed with the actual titles, you will see that the full articles are free to download. The worst thing is that the second study covers a time period when the vaccine was actually causing meningitis to plummet over 90%. There is no way they could have come to any conclusion with that huge confounding factor.

    It is also telling that those were the last papers written by those three authors, ever. Citing them is just classic, and very stupid, cherry picking, when there are so many more from all over the world showing the Hib vaccine worked in preventing meningitis in young children.

    Please stop derailing with off topic comments. This is about meningitis in college age young adults.

    Also, please stop lying about peanut allergies and vaccines. Since even you admit that peanut oil has never been in American vaccines, it is a really stupid idea to link vaccines with peanut allergies.

    So either stop with the Parker style typing, or get real psychiatric help for your delusions.

  25. Andy Marso says:

    I hesitate to wade into this, but the fact is, I was breastfed as a baby and I still contracted a meningococcal infection that nearly killed me. There’s plenty of documentation of the benefits of breast feeding but I don’t think preventing meningococcal disease is among them. I’ll keep advocating for vaccination and praying that someday science trumps ideology.

  26. Reblogged this on The Polk County Immunization Coalition and commented:
    With many parents taking their teens for back to school shots, don’t forget to ask your health provider for the meningitis vaccine!

  27. I like looking through a post that will make people think.
    Also, thank you for permitting me to comment!

  28. Amazing things here. I am very happy to look your article.
    Thanks so much and I am looking ahead to contact you. Will you please drop me
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  29. Alan says:

    Hi my name is Alan I contracted bacterial menegitis roughly three years ago and feels like yesterday , I’m 53 I was 51 ate the time. I have know idea how I got this virus I’m a pretty healthy guy . Since that awful time Being sick I also lost my hearing and had to get a cochlear implant . I would like to help others out there that has been through this . Let me know how I can help , I think you are so strong and reading your story helped me allot . Thanks .

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