It's Been 8 months after TB meningitis...And still there are so many issues...Please Help...

[aujjaju]

Hello There,

Greetings for the day.

I am writing this for my fiancee, she's 22 years old now. She had TB meningitis in July 2013. And since then she's on her road to recovery. She had so many issues earlier but some of them has gone now. But the issues she's still having is making me really worried about our future. I want to be with her for life and so I need your support to help her recover good.

She's often very silent and calm and hardly speak out on her own. She responds to questions sometimes but other times she just respond using yes or no sounds with her mouth. It feels that she don't want to talk much. She used to be very talkative. She gets tired very fast. Bowel & Bladder incontinence is still an issue. Balance is another major issue. She has weakness in her right arm and left leg which is making walking difficult and painful as she has spasm in them.

Her recent MRI report says Chronic Lacunar Infarcts in right thalamus and left basal ganglia and dilated lateral and third ventricles due to Hydrocephalus. It's already been 8 months. She's on TB medicines and some pain relievers.

Please help me with your experiences so that i can help her to recover to a good level so that we can continue our life. As she is too young to be that ill...I love her very much...

[cveks]

Hello,

I am recovering too from viral meningoencephalitis which I got at July 2012. I took me moe than 1.5 year to recover and I cant still tell that I am fully recovered. I generally feel well now, I skied like 25 days this winter , but I still some have after effects like post viral syndrome which makes you feel weakness in arms or legs from time to time, and I also have painful lymph nodes from time to time. What is most important for recovery is not to rush things. That means you need to create new schedule of daily activities with much more rest than earlier. You need to sleep a lot, 7-8 hours at night and 1-2 hours during the day. You need to walk a lot, in country or on Mountain to get fresh air and you need , what is most important to enhance your diet. My diet consists of drinking lot of teas like green tea, astragalus and cranberry teas, and taking supplements like garlic, st. john's wort, echinacea, MSM. MSM helps a lot with creating balance in body to fight chronic fatigue and weakness in arms and legs which is neurological disorder. Also she should drink lot of lemonade on daily basis and have diet based on fresh fruits and vegetables.

That will speed up recovery, but it is important to know that recovery from this kind of diseases sometimes takes years, and that you need to be patient and take your time. If you look on this from positive side, which I do , because I am still alive, you will recover slowly from month to month. Lot of people who survived this kind of problem have problem with depression because sickness change your life radically . You need to embrace your problem, to adapt and to fight for recover . And remember always look at bright side ....

[aujjaju in reply to cveks]

Thanks for your kind reply. Did you also faced similar issues like bowel and bladder incontinence, lack of talking behaviour. ..etc.

[cveks]

No I did not have that after effects . Each case is unique and after effects depends which zone of your central nervous system virus or bacteria affects. I had lot of headaches , and I was having flu-like symptoms for more than year because source of my illness was probably West-Nile Virus or some other mosquito borne disease because I got ill after I have been bitten by mosquitoes on my vacation in Greece . But all that passes after time. It just goes very slow, and that's people depresses most. But as I said , we need to look it from the bright side - we are still alive, and we survived very serious illness which kills many people.

[stagehand5]

Every person is different and how meningitis has affected them is going to take time. How much do you love them is the big question. I caught bacterial meningitis in 2011. I will never be the same. Balancing yes I have that problem but I pushed myself to walk,destroying two walkers when I took tumbles but I get around with a cane now. Hearing I lost that but due to modern medicine I can now hear on my left side due to having a ear implant I call it my bionic ear. Other issues yes. You are her support team so you have to step up. Its not easy,takes time.

[Loftus]

Hello. I'm sorry I know little about TB Men however this is a serious and on going illness. I don't know what help you are receiving but it sounds like you need much more. She needs nursing care and medical care specifically for her. You sound very brave and loving which is so important for long term recovery of your friend but perhaps at present she's too poorly for you both to be struggling on your own. Can you phone the Meningitis Now help line ? They maybe able to advise you on the help you can get in your area, if not,there maybe other charities that can source the help you need. x

[iluvdogs]

hello

i am so sorry to hear about your girlfriend, but by writing this letter, you must love her a lot. i have never heard of tm before, but before i got viral meningits, i never thought about. its a terrible thing to go through, and after 6 months i am still having problems with walking. thankfully i have a patient husband who helps me and jumps for me. just keep caring for her and try to get more answers from the doctors. i would suggest you find out how she contacted this terrible disease. take care and if you would like you can write me back. i wish you all the best....barb

[aujjaju in reply to iluvdogs]

Thanks for your kind reply. Dud you face any of the above issues. What helped you to recover? Please guide me so that I can help her better...I love her so much. ..I want her back in my life....

[denyang]

hi Anuj, keep the faith, I know your fiancee will recover. Just keep on talking to her and always let her feel that she is loved whatever it takes. Bless you!

[Prayerss]

Hey Nantha ,

How are you doing now? My dad got diagnosed with TbM. Just worried about his recovery. Please give some guidance from your experience.

Thanks

[nanthakumarrr in reply to Prayerss]

I'm fine for me doctors performed an operation in head and placed vp shunt.For your dad from my experience i advice you give him tb medicines at times doctor prescribed without any fail.Taking tb medicines irregularly can cause multi drug resistance tb it's dangerous.Give him good protein foods as he might lost much body weight and to regain muscular strength do exercises.Spend time with him.Make his mind occupied with good things whatever he likes.I'll pray for your Dad's recovery

[Prayerss]

Thanks for responding Nantha. How long did it take for you for the dr to say that you will be fine. For my dad it’s been a month on meds, he is in hospital and will stay for another month. He is stable, talk to us but at times gets confused and his memory is still little fuzzy. Dr’s says it’s still early to say anything. How long did it take for you to start showing signs of improvement? And did you encounter things gotten worse again after everything came back on track.

[Janakiramang in reply to Prayerss]

Hi My son went through TBM and is fine and back to near Normal ( 2 years). Be ready for a year of recovery in minimum. He will recover for sure. Keep the TB meds and healthy food ( high proteins), family support on. TBM is different from VM and BM. It has all that M causes that you would have known from this forum - plus adds up a lot more from side effects of TB medicines. Important to keep watch for is - stroke. It can happen and did happen in my sons case. Usually they have a steroid in the early days and when tapering off them, side effects like light sensitivity, sound sensitivity, loss of hearing, vertigo happens - some times memory is jumbled. It all gets back to normal - trust me. Support him with good care. MEdicines without fail, watch for his liver function every 15 days ( TB meds cause liver upset) consult doctor who has seen TBM. Best of luck for his recovery. TB med course is dependant on patients and can go for up to 12 - 18 months.

[Prayerss in reply to Janakiramang]

Thanks for responding Janaki. When did the stroke happen for your son after 2 months of t/t or before that. Just want to know when and how long to watch for stroke.

[Janakiramang in reply to Prayerss]

Stroke happened in about one and half months after. Watch for weakness in limbs, double vision, extreme sleepy nature and alert doctors and ask if its a early stroke symptoms. discuss possibility of stroke with doctor when they withdraw / taper off steroid. ( Dexamathasone). If you are in Europe, they follow protocol, if it is Asia or India, they have much better experience and continue steroid and taper it very slowly. Steroid is used for TBM treatment as the immune system does not let the TB meds cure Tuber out of brain - i believe. Dont be scared. For us prayers and friends were a great source of support. Of course this forum helped us to be better prepared for a long haul. You will find very less of TBM and more of VM and BM here though suffering is common.

[jo310]

In

[menchild]

Hi, I had bacterial meningitis almost 5 years ago. I have made a good recovery but I will never be the same again. I can relate to the not wanting to talk. It hurt my brain 🧠 to talk too much. I got very tired and needed to sleep a lot and had to pace my life. I did not have all the issues your fiance has. Time does heal but she may have ongoing issues. This is an acquired brain injury. You need to find good medical care to manage her disabilities. She may need some counselling too. I wish you both the best and hope she recovers better functioning in time. Rest Rest Rest Rest is the best medicine.