Infectious disease Doctor

[Day7]

Had a follow up with my primary Doctor and he is sending me to a infectious Doctor to follow up. Has anyone else been sent to a doctor like that? I'm 7 weeks post VM and my doctor has been great but I'm not to sure if he really understands how I still feel now and wonder if he's sending me there because he feels like I need more care? I've been feeling better I must say then I felt the first 3 weeks of my illness which i must say was so horrible I felt like I was never going to recover but I still suffer from the headaches now and again low grade fever anxiety and fatigue. Not to add my hearing was damaged and now wear hearing aids but i hope and have faith that one day with the lords healing I will regain partial of my hearing back or it all 🙏 Just wondering what to expect at this Doctors visit? Thank you and hope you all are having a pain free day 🙌

[sdjohnson231]

I saw an infectious disease Doctor within 24 hours of being admitted to the hospital. He diagnosed my bacterial meningitis and most likely saved my life. I learned more from him about meningitis than any other Doctor I've seen before or since. They are specialists in diagnosing the specific strains that caused your vm. I suspect your primary physician wants to make sure nothing was missed. Go to the appointment and learn all you can. Mine found new swelling on my brain 3 months after the initial diagnosis after he listened to my complaint about my continued and increasing headaches, so insisted on another MRI, and put me back on an iv antibiotic regimen for an additional 8 weeks. Best of luck to you.

[sonnerkay]

I also was sent for further testing by infection specialist, radiaology lumbar puncture , procedure easier than manual lumbar puncture at emergency room. Specialist did complete testing for all strains of virus, bacteria, polio,cancer of the brain, body, tumors, fungus, any reason causing VM , as the ER did not do complete testing of lumbar puncture. Results : nothing showed ! Was relieved because the treatment for fungus VM sounded nasty, but was going to do any treatment needed to prevent VM from returning. Good luck, glad to hear your feeling better, stay positive as you sound it really helps. Take care

[1proudmom22 in reply to sonnerkay]

Hi! could yo tell me who your doctor is and where you went?

[sonnerkay in reply to 1proudmom22]

Hello,

I’m in Oregon, Corvallis hospital had a infection specialist was referred by neurologist. I wouldn’t repeat the procedure as it didn’t answer any questions about what caused the VM, the treatment for cause sounded worse than VM. The lumbar puncture set me back 3 weeks. I guess a person just adapts to the new you. Good luck

Take care

Sonnerkay

[sonnerkay in reply to 1proudmom22]

Hi again,

Just wanted to say, I keep a daily journal after 3 years post VM, researching everything, I concluded that a Left sided sinus infection lasting only 3 days , led to continuing headaches for 5 months, without explanation, ER visit With CT scans showed VM. It’s been a long journey clawing back to as close to normal as I can be, good days mixed with bad days, hours, always changing. The fear of VM returning is gone, thank goodness! Take care

Sonnerkay

[1proudmom22 in reply to sonnerkay]

This doesn’t help me much but I hope you find your miricle as I know how bad I have felt and would give up everything I have too feel better. Hugs and good luck to you.

[bekele]

I went to my GP after severe headaches and fever and he sent me home with antibiotics and pain killers.The very next day,I said to myself,this is terrible and I went to the emergency room. They immediately covered me in ice blankets and gave me fluids,acyclovir and rocefrin intravenously for 7 days.They diagnosed it as some form of Viral Meningitis and didn't rule out Bacterial Meningitis. My white blood cell count in my spinal tap was 600,it should be 4. They sent me home and put me on intravenous antibiotics for 2 months which I administered to myself through a Pic line they installed in my chest.I was eventually getting better but after 4 years I have hearing loss and a annoying buzzing in my ears,some memory loss and doctors now say it's chronic Meningitis that I will have to live with.Everytime I push myself,my body and brain remind me that I have over done it. Headaches are still severe at times and I want you to know that the doctors don't have all the answers but the staff at my Emergency room was right on point.I had several specialists such as Infectious disease Doctors,Nuerologists,ENT's.They did what they could.They did tell me,when I have pain that is so severe,skip the GP and get to the ER immediately.They told me if I waited one more day,they might of lost me.Listen to your body and don't be afraid to see your Specialists !!

[1proudmom22 in reply to bekele]

Hi did you get anymore answers? Could it be toxoplasmosis or Lyme disease?

[Day7]

Thank you I am eager to see him but couldn't help to be a bit concerned when my GP told me he was referring me. Was like why can't you help me understand all this. I still have concerns where I got this VM or maybe one day I will never know. I also do have fibromyalgia and take lyrica 150mg and read a study on some people who been taking it developed VM. Can't say that's how I got it but my mind just keeps going on how where when. Not sure if you all experience that at times.

[Schmooschmoo in reply to Day7]

Hi day 7,

GP's know a tiny bit about everything but not a great deal about any specific issue. Given you have a history with VM that your GP does not seem to understand, I would find another GP. Of course referring you to an infectious diseases specialist is the right course of action, however doesn't sound like your GP has been helpful in explaining things to you. I find GP's quite useless and Thabks to many GP's the workd over, they have misdiagnosed meningitis and sent patients home to their deaths.

[N1090Z1993]

I have just had my 4 th meningitis attack in February . I have had 4 attacks over the last six years. I have been hospitalised for up to 15 days each time . I have been under infectious disease at the royal Liverpool hospital and they are amazing . I also see a neurologist . I have ME due to my immune system being so low after so many attacks . My viral meningitis is caused by the herpes virus and I Am on valiciclovir .

The infectious disease doctors are experts and will answer ant questions you have and will be able to provide you with the best help and advice .

Good luck .

[Lheisel13]

I was diagnosed with VM in the ER following a lumbar puncture. The ER admitted me and I was seen by an infectious disease specialist, who explained that they were testing me for a variety of viruses and bacterial infections. When it was determined not to be bacterial, the masks and gowns came off, but they were never able to figure out which virus it was. I was given acyclovir in the hospital, but after a day, the infectious disease doc said he had nothing else to see me for.

After i got home, I called his office to talk to him again, and he didn't have much information for me. Just that it could be weeks or months until I felt better. I have gotten more information from the folks on this forum than from any doctor I've seen.

I have headaches and fatigue daily and a whooshing sound in my ears. I am seeing a neurologist today. Not sure what he will tell me , but I'm hopeful things will get better.

[Ashcakes]

I had bm, i seen infectious disease Dr's. They r actually the ones who figured out what was wrong. I had brain surgery to remove a tumor and they inserted a device that somehow between openings tje package and placing it, it was contaminate and thats how i got bm. They r who u want to see with what u have. Better understand your issues cuz they better understand the problem