MY HUBBY WAS DIAGNOSED WITH VIRAL MENINGITIS 2 WEEKS AGO

Hi everyone,

I am writing this post because I have many concerns.... This is not an easy time for me at all and I suspect that my dearest hubby is not going to find what lies ahead very easy to deal with either after I have been reading many posts regarding the same situation of VM.

I AM SEEKING ADVISE as i need to deal with matters and being married for 34 years I suddenly seem to have a different husband.

I do not even know where to start as this seems to have been ongoing for a while before he ended up in ICU.

For approx 5 to 6 weeks he complained a little (he never complains) about bad sinus, common cold and just feeling miserable all the time....

For the record - Kenny and I are married 34 years and for the past 34 years Kenny has never been seriously ill or in hospital due to an illness - This means he does not have a medical record of sorts so to speak - he never visits the doctor and has not been in hospital for anything apart from a knee op.

I noticed Kenny getting very tired and wanting to take an afternoon nap which he never did before.|

He constantly had headaches (which he never really told me about) however he did say he has sinus and feel sickish all the time. I never thought anything of it as this 2016 winter in South Africa it has been common for people to be ill for as long as 7 weeks non stop before they feel better and the symptoms disappear.

2 weeks ago Sunday morning we wake up for church, Kenny's alarm goes off and he gets up for the loo. He looses balance and ignores the alarm after regaining his balance, flops back onto the bed- this was totally strange and i get up to give him his phone to switch off the alarm.

I immediately notice he is strange - he cannot focus, he had no clue as to where or how to put off the alarm. I speak to him but he cannot speak to me - he tries but all comes out gibberish.... OMW i almost freak.

He gets up again and goes to the loo - his off balance, he tries to flush the toilet but he cannot and does not know how - I am now frantic and suspect a stroke.

I let him sit on the bed, he must look at me but he cannot focus. I ask him stick out his tongue which he does and there is no sign of a limp tongue - but yet he cannot speak at all - all words comes out in total gibberish.

He want to fall over all the time and sleep. He coughs but holds his head as if in pain. I got him dressed and rushed him off to ER - this was a mission on it's own.

Fun and games at this stage - in the meantime he is vomiting as well -

Gosh i was frantic.

Brain CT scan - Negative - shows nothing

Blood tests - negative - only a very slight elevation of blood being to thick

LP - cannot be done - he is fighting it and does not allow the Doc to do the LP

They actually begin to suspect "drug abuse" - i suspected something with all the questions but found out later after all results was negative and showing he is squeaky clean !!!

Off to ICU

By this time he got some speech back however not knowing where he is or why he is there - he rips off all the drips, the oxygin and gives ICU such a hard time they had to tie him down - he was beyond himself and almost broke down the whole ICU - they refuse to totally sedate him and telling me this influences the bloods tests - me unsuspecting of what they are testing..... and why they make him suffer like that and i am beyond myself as he is screaming like a lunatic for being tied down and to the bed. His reactions are not uncommon they tell me.... goodness knows uncommon from what as they cannot tell me....

Following morning Monday

He is calmed and not tied to the bed anymore. He has little recollection of what happened in ER however he remembers that he could not speak at home before ER and he remembers being tied to the bed and is angry at me for leaving him without clothes and why should he be naked. He dislikes the catheter and does not understand why he must have it in.... It certainly took some explaining.

Off to have MRI the afternoon - he is still not himself and being rather difficult (he is the most calm and placid man i know... he is not a fighter and not someone who likes conflict)

He does not lie still and images has to be re-done every so often - eventually it's done. They find nothing - very little and extremely slight ischeamic changes but i am told that is nothing and there is no problem in the brain as he is 55 and it all looks good.

Tuesday transferred to High care Ward and no longer in ICU

He complains about severe headache and the sister calls his doctor a Physician Specialist who in turn gets a neurosurgeon to do the LP.

LP Shows severe pressure of fluid build up in the brain of 26 and should not be more than 14 measured in pressure. He taps the fluid to reduce the pressure which in turn reduces the headache as well.

Within hours the results of the fluid comes back - VIRAL MENINGITIS and possible ENCEPHALITIS

Oh goodness this was unexpected but a relief of being able to identify the condition. Little did I know what lies ahead.

Thursday goes well and by 5pm the doc discharges him.

We get home. Straight to bed.

He does not get up early on Friday morning and prefers to sleep in a little which is fine as i want him to rest. (he is on early pension so he can rest it's fine)

Friday goes well, Saturday and onward he shows many changes -

1. Short term memory loss from time to time

2. Child like actions and behavior

3. Irrational behavior

4. Not wanting to listen when i tell him to rest

5. One moment placid and the next a little aggravated-

6. Conversations are limited and at times he does not react when spoken to

7. Loss of concentration

8. Sometimes almost a Blasé type of reaction and other times the opposite and things must be done with urgency.

He refuses to listen when i tell him to stop and rest.

We bought a piece of ground approximately 100km from where we live and we got tenants to rent our house and Kenny wants to begin a small scale specialized chicken farming on the small holding meaning we need to move within the next month.

I try to convince him to re-organize and lets take it slow - he is stubborn and refuses to listen and tells me he is fine and the move will take place. Yesterday 2 weeks after him being admitted to ICU we drive to our other property and taking friends along with us.

On our way back home later in the early evening Kenny drives but drives off the road - we all get a major fright - eventually after a persuasion session he stops the vehicle. He gets out and loses balance - immediately i knew something was very wrong - he lost feeling in his left arm/hand, leg and foot- suddenly his speech was impaired as well - needless to say our friend takes over and we rush off to get Kenny back to ER.

45 minutes later he is back to normal and ER cannot find anything wrong.

Once again he is admitted to ICU and he is still there - doctors are baffled and have no clue as to why would that happen. His left arm was moving involuntary the other direction when he wanted it to move in another direction- his speech was not impaired all the time only for moments at a time. His hand had pins and needles -

he felt tired and was very very quiet - did not feel like talking at all.

The new search begins - Angiogram, EEG and many more blood tests. Doctor does reckon there must be some sort of inflammation but where they have no idea - it might be a minor/slight stroke which does not leave any visible damage however we doubt it.

IS THERE A POSSIBILITY OF THE VM CAUSING THIS?

20 Replies

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  • Hi there I'm sorry to hear you troubles. I've have virual meningitis and baterial and my symptoms where very different to your husbands. But I'm not an expert.

    I suggest you as for a second opinion and ask to speak to the consultant not the doctor(ie speak to the head of the department).

    I had bm first and the doctors where useless they discharged me from hospital early and I became sick again and had to go back. It was only when the consultant took the time and effort to look at my case did they find the answers.

    I hope that helps and speedy recovery for your husband

  • Thank you John, i am not sure about the consultant part though as i have never heard about such position before in South Africa in the medical field.

    I must admit i am shocked to learn about the after effects and that it is such a severe illness and people take long to recover.

    I am also sad because the doctors does not warn a the patient of the after effects or the families about what to expect - this journey is not an easy one and one can only pray and believe.

    Blessings to you John.

  • I'm so sorry to hear this about your husband as I have suffered from Mollarets Viral Meningitis for the last 15 yrs. I am 44 years old. I have recently started researching Organic Brain Syndrome as was mentioned to me from a Psychiatrist. My personality has totally shifted and I am not the same person I was even a year ago. I do not believe that I have this but some of the symptoms you are mentioning do come up. Organic Brain Syndrome can be caused from both Meningitis and encephalitis. Hope this helps. I am so sorry. My poor husband had been my biggest cheerleader thank goodness. Just be patient. Maybe see am infectious disease dr.

  • Thank you for your response on my post KGBarker - I will certainly look into the Organic Brain Syndrome.

    Currently the tests will include a 24 hour EEG and he is being placed under a Neurologist.

    What concerns me is the fact that my hubby showed signs much earlier of short term memory loss and behavioral changes from time to time - the Meningitis is just worsening this though.

    Blessings to you.

  • Please keep me posted. Will keep you in my prayers. I know your concerns. The info I did read about that said that an EEG Was one of the test that would determine this. I'm sure that the Neurologist hopefully will help you find the answers that you need.

  • I will certainly keep you posted. He is much better now again today and full of witty remarks.... i am also now convinced bed rest is the ultimate part of recovery.

    thank you for prayers, we cannot survive without it and i do believe my hubby will be just fine in the end.

  • If he was only diagnosed 2 week ago, he is definitely still in recovery mode. He should not be driving at this point. He should still be under Doctor's care. His recovery should take weeks to months or longer. He should have a follow up lumbar puncture to make sure the numbers are back to normal and that the fluid is clear. I suspect the virus is still very much present in his body. Chances are that he should still be hospitalized. He should not have been discharged without follow-up instructions and doctor appointments scheduled for blood work. Something is definitely still going on.

  • @SD Johnson - thank you for your feedback -

    OMW- the doctor discharged him without any to no instruction of follow a up LP let alone a doctors visit and i was under impression he would be just fine with some bed rest seeing there was nothing said about further treatments etc.

    In South Africa it seems as if the medical is totally not with it in the regard of meningitis at all - i am seriously shocked to learn about the after effects and how long this takes as well as the permanent damage it can cause. Everyone is afraid of BM but the VM is not regarded as serious....

    Firstly i suggest there should be a support group in every town/city Globally to support and inform patients of what lies ahead as this horrible illness can cause major relationship problems going forward when unaware of such changes in a persons character.

    I for one already had a huge problem trying to figure out why my hubby is different - thank goodness I found this support group and i am grateful for all of you who share your stories unselfishly.

    I am honest if I mention that this was freaking me out completely - Kenny is almost at times like a child - not entirely childish but reacts like a naughty child.... this was freaking me out - and at times as if he loses a little inhibition - i do not take that well...

    Thank you to each one of making awareness and helping one understand.

    I think i should make it my mission to create a support group where people can actually get together as a group and help each other understand what they are going trough.... I get this ice cold feeling to think of how many people have actually a ruined life due to no understanding of this condition....

    Please if anyone can give me their opinion of the validity of such a group....

    Blessings to all!!

  • lancet.co.za/wp-content/upl...–-THE-BASICS-MARCH2015.pdf

    Please read the attached article advising of antibiotic therapy for someone with viral meningitis for 1 to 21 days following diagnosis. This article was written by a group in South Africa, so there is a protocol in your country. It sounds like your husband still has brain and/or spinal cord swelling caused by the virus. Please take this seriously. The fact that his mental state is altered signifies that his brain has swelling still going on.

  • Thank you for the link ...for now all I can reply is; antibiotics was developed ONLY for Bacterial infections and has no benefit for a viral infection.

  • I am still recovering from VM. I was diagnosed in May. I cannot return back to work yet. When I was sick half my body was paralyzed and they also thought I had a stroke. Now I suffer in the leg that was paralyzed horrible nerve pain and muscle spasm that they can't figure out why. I keep a Cane handy because somedays my legs just won't function properly. I go see a orthopedic surgeon this week hopefully to get some answers. I've started seeing a neurologist because of my headaches and there are times I will just walk into a room and feel completely displaced. Why did I walk in here and what was I doing. My children have been very helpful and I hope it goes away because they just laugh at me. I carry a notepad around with me. I need to write things down or I WILL forget. Memory loss has been a big thing for me. If your husband is only a few weeks out from VM I'm sure anything could be associated from it. He should be in bed resting. I stayed in bed for almost a month after my diagnoses. Before I even got up to do normal house chores. If he doesnt's rest recovery will take even longer. I wish him and you the best.

  • BS NEED, thank you for giving me your info. Gosh I will also keep you with each error en else in prayers for recovery.

    I u der stand now the recovery period while bed resting is very important. He is son stubborn and drs here are ignorant as to the after effects. Nobody warned us.

    I will have to speak to KennyKenny seriously about resting and being quiet for at least a month.

    A speedy recovery and Blessings to you.

  • Drs are very ignorant to the after effects. The Drs in my home town have no clue I have to travel 2 hours to Chicago Illinois to see specialist that have more answers. But I'd rather do that than be mistreated and not get answers. I wish you the best...Your husband must rest!! He can make decisions and do things he might regret. Especially financial decisions I'd beg him to wait until he gets better! I'll be praying for you!

  • BSneed, thank you so much, yes he has already made decisions which is not beneficial at all - reversing these decisions is impossible.

    We all need all the prayers we can get.

    Your scenario as well, so sorry about your situation and having to travel - here I thought it's just in South Africa where Drs are ignorant and nonchalant about certain treatments and giving little to no support. I pray for your full recovery as well.

    I am seriously contemplating a support group in our area or even in the whole of SA - where people can call a support team, when going through this ordeal and suffering due to this infectious disease because that is what it i basically is - it infects ones whole life and becomes a disease.... not a nice thought however when someone is informed and prepared for what is to come after the patient is discharged then at least one can cope with what lies ahead.

    I found it very difficult to understand what was happening in this very short period before seeing the need to search for answers.

    Thank goodness I came across this group - this helped me understand a huge amount of things and to look further.

    My objective would be is to prepare the close family members of such patient of the possibilities and what changes to possibly expect and how to treat this illness with respect and take special care. And to give support to the patient as well, have moral support and let the patient understand about this condition.

    We were told zip and that was what i find wrong with our medical care and info directly from our Drs.

    Be blessed.

  • Trust me Drs here in the United States are just as ignorant when it comes to VM they dont take it serious at all.. I was sent home after 4 days , no information, no instructions ...Ive had to educate myself.

  • Currently on my phone and the auto changes is such a pain... excuse thiso please .

  • I am so sorry your husband is going through this...it is a vicious thing and I know it is hard on you too as I know my sickness and behavior must be driving my boyfriend crazy. I know how your husband is feeling...Everything you have explained , I have just been through the same. I was hospitalized for 4 days 1 month ago with Viral meningitis. I did not realize I would have a long road of recovery until I became obsessed and learned more of this vicious thing via internet and support groups. I have good days and some bad but definitely improving even with the new symptoms of the numb tingly arms and legs . There is no treatment for this Viral Meningitis. All I can suggest is research natural remedies. I have been taking black seed oil for just over a week now and even though I have my bad days ,they are not that bad its the most improvement and the best I have felt since being sick. black seed oil is an anti infammatory, anti oxident, strengthens immune system and much more...I encourage this and most important...lots and lots of water! Best of luck to your husband and hope things get better soon

  • Thank you Becca for your sweet reply.... yes i do realize now how much empathy one must have towards the patient suffering this vicious disease and it was not easy when i did not know what was going on with him.... at times i thought he was just on purpose and wanted to irritate me....

    He is still stubborn and he does not want to accept the fact that we cannot make the move to our other property now, it is a massive change and not just a small move... to pack up our huge house now and move will certainly put him back perhaps even worsen the problem...

    I will have to see if we can get Black seed oil in South Africa however i am now giving him Xango regarded as one of the most potent anti-oxidant, anti-inflammatory and anti-bacterial which supports a healthy immune system and can renew cells natural drink on the market. I am sure this will do the trick and should help.

    Yesterday we spoke to his specialist and he reckons they must begin treatment for TB-Meningitis. Currently an LP cannot be done to determine the type of virus.

    Get well soon and be blessed!!

  • Hello everyone, I just want to report and update again regarding my hubby now 3 weeks post VM and a week after his last hospitalization.

    This is an unexpected journey with a disease that can turn ones life around 360 degrees - I am certainly grateful that Kenny my hubby is not left paralyzed, deaf, blind or severe brain damaged yet it is not an easy journey thus far.....

    Kenny began making decisions a while before he actually became ill and ended up in ICU - a few bad decisions which put us in a position of near dispear at the current moment and taking me a while to comprehend and to manage it -

    Looking back i am thinking that this VM had a slow start and could possibly have already made some changes around ones logical thinking and decision making abilities.

    Kenny has experienced numbness / paralyzing symptoms twice now on his left side of his body and now this time on his right side of his body -

    Short term memory is not up to scratch -

    Kenny has become very quiet - definitely not the same person as before

    His sense of humor is certainly not 100% the same

    He ignores people from time to time - or so it seems

    He is much slower in action -

    Worse of all is his logical thinking that is not the same -

    He communicates a little differently -

    This disease is seriously vicious - the doctors do not have a clue how to prepare patients or the family of the patient for what lies ahead and they certainly do not have all the answers -

    VM is debilitating and not for the faint hearted family members having to cope with the patient... unless everyone knows what this is about it can be very difficult to deal with... I am certainly finding it much easier now after being part of this group then before being part of this group - by understanding what happened makes it much easier to cope -

    Sorry for putting it bluntly however i feel people should know what the possible effects can be and be taught how to cope with this -

  • Greetings to you, Vivien (and to your dear husband too, of course😍)! I'm so deeply sorry to hear of everything you two have been through of late; it sounds like a truly terrible and terrifying ordeal, and I'm heartsick that you've had to endure such a nightmare😢. Please know that you are both in my thoughts and prayers, and that I'd be delighted to share my experiences/advice if it would be of any comfort or assistance to you😋

    I'm new to this site and only just came upon your question, so it's possible that this thread has already closed; however, if you happen to get this message, do let me know if it's OK to send you some information, and I'll do so ASAP😍(?)

    Meanwhile, best wishes for ever-increasing health, strength, peace, and contentment; may the both of you enjoy steady progress onwards and upwards, with as much ease and comfort as possible😍❤️😍❤️😍❤️😍❤️😍❤️😍❤️

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