The False Labels of Naegleria

Yesterday, I almost had to pull over while driving because I couldn’t stop the tears.  Another life is gone.  Another child will never grow up, graduate, fall in love or celebrate life again.  Another set of parents is heart-broken and for a while, simply broken.  Another fresh round of grief and sadness.  Sleepless nights.  Dreams eerily twisting together a fictional comfort of life-complete again and the agonizing reliving of a child’s last days.  Another family will spend mornings waking up wondering for a fraction of a second if it was all a bad dream, before the horror of reality grips the stomach like a vice and the onslaught of tears begins anew.

It has been five years since Marissa died.  Five years.  That’s a long time to carry on life without your child; or in our case, my daughter’s best friend.  So many people have died from Naegleria fowleri since Marissa died, that it is finally hitting major news.  Naegleria, the actual organism, and the ensuing PAM (primary amoebic meningoencephalitis,) the disease it causes in the body, are both becoming better known.  More people have heard of it.  More doctors have at least heard of it and possibly read a few case studies about it.  Despite this, many people are still dying each summer.  This summer, all the reported cases have been children.  But it doesn’t have to be.

 

Along with every new death, there are some labels thrown around that I, personally, would like to eliminate. 

Label 1:  Extremely Rare

With every news report, there is at least one quoted government official or a clip from the CDC website about how “rare” Naegleria fowleri is.  This is a misnomer.  Naegleria fowleri is considered rare because many cases are misdiagnosed.  It is rarely heard of, but that does not make it rare.  In fact, the organism is present in nearly all bodies of fresh water.  It lives in soil worldwide, even the dirt in your front yard or the soil around the old, leaky pipes leading into your house.  Naegleria is only deadly when this fresh water is somehow inhaled.  This can be from playing in the water, choking on the water and having it come up your nose, inhaling bath water, or using tap water in a Neti Pot for nasal irrigation.  Naegleria is very common.  Awareness of it is what is very rare.

Label 2: It Is Only In Stagnant Water

Even after five years of learning about this, talking to others to make them aware, and writing articles about it, my own brother was mistaken on this point.  We got together this summer to take our combined families on a camping trip in the awesome state parks of Arkansas.  We brought kayaks and fishing equipment to use the park’s lake but we reminded him ahead of time that none of us, including his family, would be swimming in the lake.  He understood and completely agreed, but when we found a creek to play in to escape the summer heat, he said, “It’s okay for the kids to swim in moving water like rivers and creeks, right?” 

Wrong!  Again, Naegleria fowleri lives in soil everywhere and is in almost all fresh water sources.  If the water temperature is near 80 degrees, which is very common in the intense summer heat, the amoeba is alive and looking for a host to kill.  There are several documented cases of people contracting Naegleria from streams or rivers.  During cooler times of the year, Naegleria is often alive in warm water coming out of hot springs or power plants located on lakes and rivers.  Tap water as well, should not be considered 100% safe.  It is not stagnant water, but in two documented cases last year, Neti pot users died from the amoeba living in their tap water. 

Label 3:  Just Don’t Put Your Head Under Water

While this one can be true in some cases, I would not gamble my child’s life on this notion.  The only sure way to avoid Naegleria is to avoid playing in fresh water that is 80 degrees or above.  Nose clips and masks can be faulty.  Clips can slip off in the middle of an underwater somersault.  A mask can slowly leek water that eventually settles right in the nose piece.  If anyone is insistent about fresh water play during the summer time though, I beg of you, choose one of these options.  Using something is much better than ignoring warnings altogether.  Most likely your efforts will be rewarded with fun and safe summer play.  If you can do like us though and find other ways to enjoy fresh water with your kids, then by all means, dig out the fishing poles or rent a kayak for a day.  It is better to catch dinner than to catch a deadly amoeba.

Label 4: It Won’t Happen to Us

For whatever reason, this is the most common reason that many people ignore our warnings.  I have some theories as to why this is the case.  For starters, many parents are so afraid to even consider the possibility that their child might die, that they simply avoid thinking about it altogether.  PAM is not like the concepts of Stranger Danger, or Drugs are Bad, or Stop, Drop, and Roll that we were all taught as kids.  Naegleria is a new threat and in this day and age of thrill seekers and endless societal threats, it is often easier to stick with the list of familiar threats to try to combat. 

Another possible reason is that many adults have this preconceived notion that children don’t die; they are somehow immortaly blessed until they become teenagers or adults.  This may not be a conscious thought, but is more of a subconscious feeling that many parents cling to out of fear.  Unfortunately, we know firsthand that this is not the case.

Also, because Naegleria is touted by health officials as being so rare, many people choose not to worry about it simply because the government tells them not to.  If doctors are not pushing vaccines and officials are not warning people to stay out of all bodies of fresh water, much of the general public will go along in a blissfully ignorant state.  I believe that people should choose to educate themselves instead.  It is not the government’s job to raise our children and keep them safe; it is our job.  Now take your job seriously.

 

Unfortunately, PAM cares about none of these labels or excuses and Naegleria shows no mercy.  If you have the option of using fresh water sources when the temperatures are 80 degrees, make the right choice.  Do your job.  Save your family the agony and keep your children safe.

For more information or to support a great awareness campaign, check out Kyle Cares at http://www.kylelewisamoebaawareness.org/ or https://www.facebook.com/KyleCares.Awareness

Help Kyle’s parents, and the rest of us, spread awareness.  Help us all save the lives of children to come.

Comments

I was wondering if I should worry about kids swimming pools. Would you consider them a threat, we change the water every week but where we live the temperatures are 112* right now.

It is one I have faced every summer for five years now.  It completely depends on the situation for us.  We still allow our girls to swim in pools that are well-chlorinated.  If I can smell the chlorine, we can swim.  (I know chlorine isn't the best thing to absorb through your skin either, but it is a much better alternative than Naegleria, in my opinion.) 

Even still, we swim with masks or nose clips just to be doubly safe.  Knowing the water is chlorinated and also using nose protection, allows us to swim, have fun and not live paranoid at every little headache over the next two weeks. 

Swim parks are the same way for us, since there are several known cases where the people contracted Naegleria while playing in what they thought were chlorinated water parks.  Doubling up on protection is always worth the life of a child.

Our granddaughter Liza Hollingsworth was kayacking at a birthday party with 20 other children in a "lake" in a lovely subdivision when she contracted PAM. The girls decided to jump into the water to cool off. None of us knew about PAM until the day she passed away  July 6, 2010 and it was found in her spinal fluid. Apparently her doctors didn't even know.

ALL doctors and health professionals need more education on this disease. They should know to ask the parents of the child who has symtoms of meningitis if that child has been exposed to fresh water. It is amazing to me that we have to put the responsibily on extremely upset parents to let the doctors know that their very sick child has been exposed.

The young boy Dalton Coounts who died  from PAM this week  was swimming in the Red River in OK not a stagnant pond.

Thank you for getting this information clarified.

I'm so sorry for your loss and I know you are here and reading because, just like me, you feel the same despair and the desire to change the outcome for some other child in a positive way.  Thank you for pointing out that while kayaking can be a fun and safe alternative to swimming, it is vital to stay in the kayak and not jump in the water even to cool off.  I will even go so far as to say that while kayaking in fresh water, a nose clip is a minimal item to wear in case the kayak flips.  Every bit helps.

And thank you for the information about where Dalton was swimming.  I didn't know he was in a river.  It just goes to show that Naegleria is literally everywhere and the rarity is simply awareness of it.  Thank goodness some of these upset parents (especially Kyle's parents) are chanelling their feelings into such a helpful cause.  I love them and their efforts!

This is so well written, I will be sharing it with everyone. It says perfectly what we try to say continually. Our daughter Hailee died in 2008 of this deadly amoeba. While we had to wait two years to be told by our Health Department that is what the cause likely was, we are comitted to raising the awareness and stand with all of those we have met.

I am in contact with a mother from northern Minnestoa (we are from south central MN) that lost her daugther in July to a "brain infection" of unknown origin. So far, her daughter's samples have not revealed the amoeba (neither did our daughter's), but the case history is exact to all of the other cases. Swam on a Saturday, Dead by Tuesday. If it looks like a duck and walks like a duck....... it's probably a duck.

We believe there are many more cases like our daughter's. "Unconfirmed". It is such an ugly word because it sends a false sense of security to others that may think, "oh, well it wasn't confirmed so therefore it wasn't NF". It keeps people living in the fantasy world that nothing will happen to their child.

I thank you for your writings, it touches my heart. God Bless you and your family and your Angel Marissa. Can I ask how old was Marissa?

 

Heidi LaMeyer

Heidi, my heart breaks for you and your sweet Hailee.  I've read her story and it pained me all over again to read about your loss.  I agree that all these seemingly unrelated cases sound too similarly scary to not be the same thing.  I think so often the disease progresses the same in outward appearances, but how it presents itself in the clinical sense still throws off doctors who might even be checking for it. 

I'm so glad you have found comfort in joining together with other families to help spread awareness.  Kyle Cares is one of the good things to come from all this tragedy and loss.  I believe, truly believe, that even though there have been cases of PAM this summer, numbers would have been higher, had Julie not taken her grief and harnessed it for this cause.  I also think that more cases are being diagnosed these days, due in large part to Kyle Cares making doctors more aware too.

I'm glad I could touch your heart with my writing.  Usually my blog is about being married to a fireman and raising our girls as homeschooled urban homesteaders, but Naegleria is something I write about regularly.  It is a deep passion of mine and I pray every summer that we could make it to the fall without any cases.  This is yet to happen, but I'll keep writing about it until it does. 

Marissa was 7 years old when she passed away in 2007.  The week before she died (the weekend she went swimming) she had been making plans with Storm (my daughter) to have a sleepover for her 8th birthday.  It was going to be the first sleepover we let Storm go to.  She was so sad she never got to have that time with her best friend.  Marissa would be turning 13 in a couple months.  If you want to read some of the other stuff I've written about her, just type "Marissa" into the search bar on my site and it will pull up more stuff with more background info.

I'm so glad you took the time to write, Heidi.  If you ever need to, or want to, use the contact form on the site to get in touch with me. 

~Cynthia

this is so sad and very new to me. i called ccd and asked a simple question. i wanted to know if random tests were conducted in near by lakes for this amoeba. they told.me no that water tests were done on a local level. I live in Texas and would like test results posted before I take my family to the lakes.

Dan,

I know that water can be tested for Naegleria because I have searched for this online.  The testing I have read about though has been done either as small sampling within a college class or in a specific water park or lake after someone has died from NF.  I need to research more about testing options so I can have more knowledge of the subject.  When I know more, I'll be glad to post more.

For now, read through the next comment left by an infectious disease doctor who also lost her son to Naegleria.  She refers to tests, with some good insight about them.

I base my family's safety precautions on the knowledge that Naegleria exists in soil and waters all over the world.  Since this is a fact, we always plan water activities in ocean water, chlorinated pools, or double up on safety protection for kayaking on lakes; we still can't stomach the thought of lake swimming though.

Your insights are spot on. "Rare" or not, this is a parasite that kills rapidly and horrifically, usually children, before anyone even thinks about the risk. How can there be a risk if it's "rare" and there are hundreds of other people in the water? There are usually no signs, no warnings, and heavy advertisement for water sports to cool off in the ever-worsening heat.  How rare is it, really, when most don't think to look for it, the tests for it require expertise or days for a send-out test to come back with *possible* results, and even then, only an autopsy may be diagnostic--IF it is performed at all. I am an infectious disease subspecialist and my husband a hospital pediatrician. Of all people, we should have been able to do something. But we were lulled into complacency by family and friends who blew off the risk and went wakeboarding all the time.  Even when he got sick, by the time Naegleria was considered, our son was too far gone--within 24 hours of first headache--for tests or treatment; worse, what treatment there is is 99% ineffective and potentially toxic itself. Our son was diagnosed at autopsy.

This is not a disease one should be "prepared for", it's one that has to be PREVENTED BY AWARENESS. I hope that rapid tests are developed and used widely, yes, because it will allow us to capture all we're missing. Armed with numbers, we can push for effective treatment. But that's in the future, and this is NOW, and there is NO TIME to lose. One more child is too many. 

We must find it & prevent it NOW, diagnose it & cure it someday.

 

Philip Thomas Gompf

August 5, 1999-August 17, 2009

 

 

Sandra,

Above all else, my heart goes out to you and your husband for the loss of your baby boy.  I've read his story on Kyle Cares.  He and Marissa and my Storm would have all been right about the same age and they probably would have all had a blast together too, judging from their interests.  I'm so glad you were able to donate his organs and take comfort in the lives saved.  Marissa's parents chose the same path and every year we have a huge group of friends and relatives that travel together to our state's annual donor memorial service to honor those who saved others.

I also want to say, "Thank you.  Thank you.  Thank you," for your openness about Philip's story.  Given your professions, I have a feeling you were very hard on yourselves for not knowing, preventing, or being able to do anything to help Philip.  Being as uninformed and unaware as the rest of us though, I don't think any of us could have fully understood the risks associated with supposedly safe water activities. 

I completely agree that now is the time to change things.  Now is the time to make others aware.  In this, I will play any part I can.  I don't want any more children to die from this, ever.  As awareness spreads, I hope that research into testing and treatments will drastically improve.  But the first step is definitely to arm people with knowledge before they get into the water.

If you would be willing to get in touch, please send me an email through the contact form on this site.  I have some questions I'd like to ask, if it's okay. 

I think the best way to save the lives of children to come, is for all of us to band together and keep getting this message out there.  We are just a few, but I am a strong believer in the power of a few passionate people. 

So a lake just was closed and my daughter went swimming in it. I don't know what to do, if i should take her in or just wait out another 7 days? Is there really nothing they can do for her? 

I'm assuming you are from Minnesota and are hearing about the most recent boy who died from Naegleria fowleri.  I completely understand your panic and I sympathize.  I've been in this position before too. 

I am not a medical doctor and can not give medical advice.  But I will tell you what I would do if I were in this position again now.  For starters, I would contact my child's doctor and make sure he/she is aware of Naegleria and is educated about it.  I would let my child's pediatrician know that she was swimming in the same lake recently and that I am VERY concerned about NF.  The pediatrician may choose to see her or just say to bring her in if she starts feeling sick. 

Then I would go online, research Naegleria Fowleri, and learn all the signs and symptoms to look for.  Some of the first signs are a headache and unusual changes in the way things smell or taste. 

Educate yourself for the best protection and prevention.  Please write back and let us know how your daughter (and you) are doing.  My prayers are with you both.

 

Here are some useful pages to check out to make yourself and others more aware:

http://www.cdc.gov/parasites/naegleria/faqs.html#fatalityrate

http://www.kylelewisamoebaawareness.org/AmoebaAwareness.html

http://www.gompfsidpearls.net/?page_id=56

http://www.medicinenet.com/naegleria_infection/page3.htm#what_are_symptoms_and_signs_of_a_naegleria_fowleri_infection

The middle two links are set up by mothers who have lost children to NF.

Thank you to all the parents who share the lives of their children with us. It is making a difference. As a father of a 2 and 3 year olds, I was looking forward to taking the kids to the local lakes to swim in the beached swimming areas. I recently heard about a 14 year old young man who succumed to NF (didn't know exactly what that was until I found KYLECARES - the news outlets are not specific and do not seem interested to give follow up warnings). I had taken the kids once already this summer where they played in the shallow muddy water and our girl pulled up mud from the bottom to play with. Our little ones are hesitant to get their heads in the water but now I realize it could have just taken a slip on the bottom of the lake or even a splash in the face. I'm sure the water temp was up that day. Needless to say we will be taking precautions and I will not be letting them in that situation. Also thanks for the warnings about kiddie pools getting heated as we use them also. I cannot imagine losing my precious ones and my heart goes out to all these parents. Just know your efforts are not in vain and like someone said, until there are no more deaths there is more to do. I will do my part to spread information about this site and KYLECARES with my family and friends. Thank you very much and God Bless.

Roger, thanks for your feedback and kind thoughts.  It is great to hear from parents who are listening to the awareness and heeding the warnings.  Everyone who learns about Naegleria fowleri and works to prevent it, is one more person who can help spread the word.  Thank you for being willing to be that person.  Not only have your efforts just saved the lives of your own precious babies, but those efforts will likely help save someone else's loved one too because you are willing to talk about it.  Thank you so much for your help!

~Cynthia

Hello all,

 

I would like to say first that I commend all of those who have posted for bringing such an important subject to the fore.

I was hoping that someone might be able to answer whether or not bath water is a potential risk if inhaled?  There is brief mention of this, but it seems to be that most evidence points to freshwater "outdoor" sources. In terms of the likelihood of infection from a hot water bath in a home/apartment water supply (in this case in Japan), does anyone have a speculation regarding the chances of the bacteria entering the body?

 

Thank you,

 

Jared

 

 

 

 

Hi there Jared,

 

To answer your question about the bathwater, it is definitely possible that someone can get infected from bathwater entering the nose.  Location, such as Japan or the United States or Europe, is less of a factor than simply the temperature of the water and whether or not the water is inhaled. 

There have been some documented cases where a child who was bathing and playing in the water, and one where an infant being bathed, got water up the nose and died from Naegleria as a result.  Also, the use of Neti Pots is proof that water can survive inside plumbing systems and still come alive in heated tap water.  A couple summers ago, there were at least two documented and highly publicized cases here in the United States where Neti Pot users used tap water rather than distilled water and both died from Naegleri.

Naegleria fowleri is known to exist in soil all over the world, so residents everywhere should be aware of the potential risk, both indoors and out. 

 

Thanks for your question Jared and if you have any others, please ask any time.

 

~Cynthia

Cynthia,

 

Thank you for your reply to my post, and for the information.  I think your site is an extremely useful and necessary one to educate  everyone who is unfamiliar with this terrible bacteria.

I know that both with adults and the young alike, there are always opportunities for Naegleria to invade from bathing, particularly in a country like Japan, where bathing and hot spring bathing are everyday events. 

As someone with young children, and who has been dunked more than once in both fresh and bath water, have you seen any sites that explain why it is the young who appear to be so much more succeptible to Naegleri?  There must be equal opportunity for both groups of individuals to become infected, but the overwhelming numbers point at younger victim populations, not adults.  Are adults bodies less prone to infection than infants and young children?

Thank you, 

 

Jared

 

 

 

I'm very glad that you find my site both informative and helpful when it comes to questions about Naegleria fowleri.  It is very important for more people to learn about it and be aware so they can make informed decisions about themselves and their loved ones.

As for your question about children being more susceptible than adults, there is no definitive answer I have found to that question.  I can give my educated guess, or opinion, as to why children are more often infected, but I have found no scientific studies or data studies yet to support my theories.

Here they are anyways:

1) Children tend to be more rambunctious than adults when it comes to water activities, so therefore, more likely to do the things that would cause them to inhale water.  Remember, being dunked in water does not cause Naegleria.  The organism can even be swallowed and cause no harm.  It is only when the water is inhaled, whether in a sniffing, snorting, choking or forced manner (as with impacting the water during water skiing,) that really causes Naegleria fowleri to take hold and grow.

2) Adults have usually spent years learning to breath out through their noses during water activities.  Children are often still learning this skill.  When adults do go under water, it is usually second-nature to start breathing out through the nose, even before our heads touch the water.  For children who do know how to do this, it is often more of an afterthought once they are submerged and start to feel water creeping up the nose. 

 

I'll say again that these are just my theories from my observations.  While it is not at all impossible for adults to contract Naegleria, I believe that children are just more likely to contract it due to their playful nature.

Thanks for writing back and if you have any other questions, please ask.  I am compiling a list of Naegleria fowleri FAQ and Answers, and your questions are exactly the type of thing I want to cover.  So if you have more, please let me know. 

Thank you for all this information. I am simply a scholar/student curious to learn about other cases of N. Fowleri and how to prevent being infected. It is amazing to me how such a small organism can wreak such havoc on the human brain. What also fascinates me is that these amoebas are quite common in most fresh water bodies and eat other bacteria, yet when they end up in humans, they go for the brain to feed on neurons so they become unintentional parasites to humans  =( I have a roommate that is starting medical school and will be focusing on neurosurgery. I told her about the amoeba and she was not quite familiar with its mechanism but that she will learn more about it as a result of me mentioning it. She did mention that a professor at USF is doing research on this and other microorganism. Hopefully the more researchers make doctors aware of this amoeba, the more awareness and possibly medication breakthroughs will come up to prevent but also treat the disease caused by N. Fowleri. Hope that you and other families find peace and comfort through these hard times and keep up the great work. 

It's great to know that you are searching this topic just because.  So often, it feels like the only people out there who are reading or listening are other families who have been affected by NF.  I hate this nasty little amoeba because of what it did (and continues to do to others,) but I am also fascinated by its crazy ability to survive.

I'm glad you also brought NF to the attention of your roommate.  More people in the medical community, including those just joining the ranks, need to be aware.  Your roommate is correct about the professor at USF, too.  Her name is Sandra Gompf.  She does some amazing research and even though I have no medical background, her blog and information fascinate me, too.  I keep up with her research and think it's great that your roommate knows about her.  Unfortunately, I know Sandra because she too has lost someone to NF.  Her beloved, beautiful son, Philip.  Here is a link to her page about Philip and from there, you can click on the tabs up top to see her other work.  http://www.gompfsidpearls.net/?page_id=56

Thanks for your comments and if you have any questions or want to add anything, please write back!

Is there a chance of infection from shower in a big city house, and especially from washing hair where water goes in your nose? Must the water be inhaled deep? Or can this small ammount of water wich gets in your nose infect you? If that's tha case then no one is safe nowhere in the world!!!???

There is no way to say for sure that no one can catch Naegleria fowleri from their home water pipes.  If the amoeba exists either in the water supply, or in the pipes, or in the water heating system, it is possible to contract it.  It is not very likely that you will contract it though. 

Naegleria fowleri is brought to life within your body by inhaling water containing the amoeba or the cysts up into your nose.  As far as all the research I've done, I have not seen any evidence that would make me concerned about normal showering and washing one's hair.  Water particles in the air will be caught and filtered by your nose hairs.  The problem is when water is forced up your nose, or you choke and sputter the warm water and it travels up your nose by this method.  The only time I've heard of someone contracting NF from their home water supply was either by using a neti pot, or playing underwater kid-bath games in heated bathtub water.

I hope this answers your question and quiets your concerns.  While I am a huge, huge advocate of being cautious and educated about Naegleria fowleri, I do not think you need to worry every time you step into the shower.

My family just bought a house with a swimming pool in West Virginia. The pool was clean but had a few leaves in it. The pool had not been treated with chlorine for about two months however. We swam in the pool and a few days later my four year old started running a fever and complaining of a headache. We took her to the ER immediately concerned about Naegleria fowleri. The dr assured me that she had no other signs of meningitis or encephalitis and just to watch her but thought it was a virus. Later that day her fever spiked to 104 so we rushed back to ER but with Motrin and Tylenol her temp returned to normal and again dr assured us no other signs of concern were present. Then yesterday with Tylenol every 6 hrs her fever remain in the 99.1 degree area and she only occasionally complained of headache but ate and played normally otherwise. Then around 7pm last night she started crying that her forehead hurt really badly and became sensitive to the light but no other new symptoms. Her fever did return to 102 during the night as well. She tossed and cried a few times in her sleep until around 2 when she went into a restful sleep. This morning she says her head still really hurts but is able to also act normal otherwise. I am just really freaking out. So my question is do you know if the symptoms of naegleria ever seem to improve before they get worse and how quickly do the stiff neck disorientation and other meningitis symptoms develop?  Do I still need to be afraid or does this sound more like a virus and I will just have to ride it out?  I know you are not a medical professional but you probably have more experience with it than the drs she has seen. Please let me know as soon as possible what u think. Thank you so much. I'm a very concerned parent. 

Abby, first let me calm your fears.  You are doing exactly the right thing, being concerned about NF and the timing.  In this situation, rushing her to the ER could make all the difference if it were NF. 

As you said, I'm no medical expert, so please don't take my advice as such.  I will tell you as another concerned parent though, after 3 days of questioning the symptoms, I tend to agree with your doctor's assessment.  The cases I have seen or read about, the person with NF never gets any better; the symptoms just keep worsening with no relief.  The symptoms also progress quite rapidly, which would put her well beyond a headache by day 3 of symptoms.  The headache is usually the first sign and is maybe slightly relieved by OTC pain meds, but the nausea, vomiting, funny smells (according to the NF patient,) uncontrollable fever, stiff neck, seizures, etc. will usually arrive or run their course within just a couple days.

Again,this is strictly how I would feel (or have felt in the same situation!) with my own children. 

It is up to you to follow your gut instint though and if she is complaining of worsening symptoms or additional symptoms later and you're still worried, take her back again.  You can never be too cautious when it's your child's life on the line, in my opinion.  And when you go, if you are truly concerned about NF, make sure the medical staff helping you knows about NF, knows the signs, symptoms, tests, etc.  If they don't know about it, then a diagnosis of it would be impossible. 

Think of it this way: if you make them know about it even though your daughter does just have a virus (per your doctor) maybe you'll save the life of someone else's child someday because your doctor will have the knowledge to identify and seek treatment for NF in the future. 

Prayers for you and your daughter, Abby! 

If you would keep me updated, I would appreciate it.  And please, clean out and treat the pool properly before anyone swims again. 

I'm 14 and yesterday, and today I was wakeboarding/wakesurfing on lake anna VA, I am a competitive swimmer so I don't get water up my nose easily but last night I was fishing and I had a very large headache, when I woke up today I did not have one but then I got another one when we went out into the sun again, I do have sunburn on my face so I could have sun poisoning and I aam partially dehydrated along with a electrolyte deficiancy, I have talked to my parents and they say it's sun poisoning but I'm still very worried and kinda having panic attacks

I was offline most of the week and I'm just now checking the comments.  I apologize for not getting back to you sooner.  My only advice would be to tell you to go to the hospital, tell them your concerns (mention Naegleria fowleri directly and if they don't know what you're talking about, then educate them a little so they can know what to look for) and let them check you out. 

I'm sure, by now, you are feeling just fine again.  But the best part of all of this is that you know about the dangers of NF, how to prevent it, and what to look for.  I applaud you for taking a proactive approach to your health at your age, but please, please be careful when participating in all of the fun summer water sports.  I never want to hear your name as one of the NF statistics. 

Stay safe, Jack.

Should people have their well water tested? And who would you contact to do that, your local health department?

Sam,

There are simply some things I don't know the answers to.  I will tell you a couple other facts that may help you make your decision though.  Naegleria fowleri is an organism that is present in soils all over the world.  It lies dormant until woken with warm water.  We can breathe it in through dust particles even, but the hair of our noses should do their proper job of filtering such dust particles and junk out of our respiratory system.  One way people can still get it, without submerging their heads in contaminated water, is to use something that will flush the dust particles up into the sinus cavity, such as a neti pot.

This is the way most people who have NF and have not been swimming recently, have caught it.  It is either in the soil particles already in their nostrils, or it is in their water supply and they have not taken the proper precautions with using the neti pot (like using distilled water only, distilling your own water, preparing the proper salt solution for the neti pot since salt water can NOT contain NF, etc.)

Naegleria fowleri is not harmful if it is in your water system, except by inhaling or choking and sputtering on the water.  You can drink it all day long and have it not affect you in the least.  If you are concerned about children during bath time, then make it a rule that they have to keep their heads above water.  We do.  My girls can only practice their swim-breath techniques in well-chlorinated swimming pools.  We are on city water supply, but in case their water supply were to have it, or in case our old water heater in our house were to harbor NF, we just choose not to take that chance.  We choose to assume our tap water has it, so therefore we avoid the things that would cause us to catch it. 

If you choose to have your well water tested, I'm not sure where you would start.  I would probably do, as you suggested, and call the health department to ask.  Remember though, NF is getting more media coverage, but it isn't exactly mainstream yet.  Our little health department here had never heard of it when my daughter's friend died from it.  Because of this, they never reported her death to the CDC as a NF death.  You might have to educate your own health department on NF before they even know what you're talking about. 

 

Good luck though, Sam!  I love your proactive approach and willingness to learn more. 

Thank you so much for sharing a lot of information about NF.  My 2 year old daughter snorted water while taking a bath using lukewarm water, now I am getting paranoid.  Is there some early signs and how soon do they  come out?  Again thank you and may you be blessed.

I completely understand this fear and paranoia.  My husband and I have been through it many times even in our own household, even after all that we know and all that we do to prevent NF.  If you've read this, you've probably read a ton of other information about NF too, so you probably know all the signs to look for.  First, if she acts like her head hurts at all, that is usually the first sign.  From there, I would check the stiff neck.  If either one or both of these things seems to be present and is a large concern for you, definitely take her to her doctor, explain to them all about NF and why you are legitimately concerned (in case they don't know about it, because believe it or not, we still meet doctors who have no idea what it is or how the symptoms present) and ask them where to go from here. 

My heart is with you and your little girl, Josie.

Can you get it from inhaling dust I'm very scared I accidently inhaled dust while I was dusting am I at risk?

Claire, I remember asking myself this same thing when I first worked to learn more about NF.  After I thought about it, I realized that our bodies already have prevention mechanisms in place to keep us from inhaling toxins from the environment.  The tiny hairs inside your nose, line it in order to catch all sorts of loose particles of dust and other things that float through the atmosphere and tickle your nose on a daily basis.  Inhaling NF in dust will not cause NF to take root in your body.  It is when NF is forced high up into the nasal cavity by the action of inhaling or snorting water that a person can catch NF.  So sleep well tonight and dust without worry.  I hope this helps alleviate some of your concern.

I understand it takes up to a week for symptoms to develop, but do you know if the child feels perfectly fine (lots of energy, no aches, pains, etc.) up until the first symptom appears? My kids may have been exposed while swimming in a river and my son threw up the day after on our car ride home. Probably just caused by motion sickness, but it got me thinking about NF and now I can't seem to stop. He says he feels completely fine, but I don't know if I'll feel comfortable until we get past that one week mark. Do the symptoms just appear out of the blue at some point? I can't stop worrying.

With my daughter's best friend, she felt just fine and played at our house the day after she contracted it; attended school for the week; called my daughter on the phone the night before her headache started to answer some math problems my daughter had; was overall perfectly healthy all week after contracting NF.  The first symptom was the headache that just wouldn't go away on Friday morning when she woke up.  From there, it progressed rapidly.  By the end of the school day she was throwing up in the school bathroom, still had a headache, and spiked a fever and stiff neck soon after.  Medication, such as Tylenol or Motrin, had little to no effect. 

If your children exhibit any of these symptoms, obviously take them to a doctor, and make sure the doctor understands your valid concern about exposure to NF. 

Hopefully your children will be just fine and you can breathe easy soon.  I understand that worry-and-wait period all too well, as I've been through that with my girls several times too. 

I am worried about my 5 year old. Kid were playing in the sprinkler today and he sprayed water on his face many times. We have city water, but live in Texas where its hot. What should I look for? I am worried sick.

hi im phil im 23 and I only heard about this amebia from the animal channel. would I be affected by this amebia or would my immune system stop the virus?

Hi Phil,

I'm not a medical expert, by any means.  But in all the research I've done on NF and all that I've come to learn about it, anyone can catch NF.  There is no particular group who is solely affected.  Anyone who participates in activities where warm water will be inhaled or forced up their nostrils is at risk. 

Hi,im 15 year old from croatia and im wondering if i can get it in croatia.I live in Korcula,It is an island,Can i get it here.And also can i get it from the dust or sea water

Pleas answer

 

The simple answer is yes, NF is possibly in the soil in Croatia too because soil all over the world can contain Naegleria fowleri.  But this does not mean you can get it easily.  Conditions have to be just right for NF to be alive and infect someone.  NF prefers warm water, so cold water is not likely to contain the living amoeba.  NF does not survive salt water so ocean water is safe to swim in as far as NF.  Dust can certainly contain NF, but people typically don't catch it from breathing in dust because the hairs inside our noses catch and filter it out before it can get high up into our sinuses. 

I hope this helps answer your questions and eases your mind some.

I was brushing my teeath and little. Drops.got into my nose but I blownd. My nose. Becuse I was scaredwscaredscared can I get it

Luka,

 

There is no need to worry about the little droplets that land inside your nose while brushing your teeth.  If you have a little water inside your nose, you are fine.  Water has to be snorted high up inside your nose, all the way into your sinus cavity to be able to catch Naeglarie fowleri.

Thank you for this site! I have a toddler and naegleria fowleri scares me. We follow all precautions with him. 

 

I do have a question though. I have read conflicting information regarding the cysts. Can they cause infection if they get into the sinus cavity or are they harmless? CDC shows that only the trophozoid state as being infectious whereas I've seen other sites that state that cysts can cause infection as well. Since you have so much knowledge I thought perhaps you may know which is accurate. Thank you in advance and I am truly sorry to read about your daughters friend. I wish there was rapid testing and good treatment available already. 

I'm just glad it helps some people hear about NF and understand the dangers.  It means a lot to know that others are listening.

 

As for your question, I honestly couldn't comment as to which one is more accurate.  I, also, have read both versions.  But as far as the clinical diagnosis papers I have read, I have not read of one where someone inhaled cold water with the NF in cyst form, and actually caught NF.  I have only read about people coming down with NF after having inhaled warm water where the NF was already alive and active.  This doesn't mean it is not possible though.  It is an interesting question.  I will keep seeking an answer too, because now you've really struck my curiosity.

 

Thank you for the question.  I wish I had the answer already.

Hi I have read a lot about NF from the time I saw the story about it in the news last year. We live in Florida so no more swiming in the lake for my kids. I do worry about the pool but my husbend thinks I m nuts. I know NF can't live in salty water but my question is this: I just used saline spray. I know the amoeba does not leave in the salty water, however the bottle I used did not have a cover so i am sure some of indorse dust was on it. Can the amoeba enter the nose from the dust when used with a spray? 

Hi there.  I completely understand your hesitation about pools.  We always worry about the chlorine or salt levels when swimming in public pools too.  I suppose it is possible to contract NF from the dust on the saline spray container, but probably not very likely.  I do not have any definite answers about this though because in all the research I've done, I've never seen anything one way or another about it.  I'm sorry I can't answer your question more completely.

Hey I'm 19 living in Windermere Florida and I was biking from the sidewalk over a mini creek off shoot from a sprinkler and there was some splashing near my eye but I don't know if it went up my nose any thoughts on this?

Hi there,

 

Water splashing on your face is not likely to give you NF.  Water with NF in it has to be inhaled high up the nasal passage in order to implant the amoeba where it needs to be to take over the body's system.  If it is just splashed on the face or even up the nose, there is not much of a threat unless you breathed in and sucked it way up inside your nose.  19 and spending springtime biking in Florida?  Go have fun and enjoy your peace of mind!

If you can get infected through the eyes, I've never heard of it.  Water with NF has to be inhaled high up the nasal passages where it then lodges in the sinus cavities and takes over.  I don't see how this is possible through the eyes.  Thank you for the question though!

hi I live in the UK and well I was showering this morning and a bit of water got into my nose, now i'm worried that i'll get it 

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