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Topic Viral meningitis? Go to previous topic Go to next topic Go to higher level

By mylove On 2010.06.04 01:31
Has anyone had experience with viral meningitis? Shakydog was diagnosed with a case of it at the end of April. It was a rough week or so getting through that, plus the misdiagnoses and the side effects from the lumbar puncture (spinal tap). That's a whole other story, but I'm not getting into the failures of the local medical facilities here.

What I would like to know is if anyone has ever experienced it with their PWP. Six weeks later he is still suffering from daily headaches that won't go away, severe tinnitus, plugged ears, and fatigue. Tonight he said that he took his meds today and it was as if he hadn't taken them at all. More upsetting is the 'new' symptom of forgetfulness. He went to take some ibuprofen for the headache, and couldn't remember if he'd taken them or not. He also couldn't remember taking his nightly meds. He is alert and oriented, but this is more like a fogginess, and it's a new symptom along with the rest of the constellation.

In researching online, I see that these are symptoms that can be lingering for viral meningitis, but that in most people, they reach full recovery fairly quickly. Usually the long-lasting syndrome happens mostly for people who have had the far more serious bacterial meningitis (which can be fatal). What I wonder is this: is he falling into that 'long term side effect' group despite the fact that he had a fairly mild (by the bloodwork) case of viral meningitis because he was already compromised by the Parky? Or a similar scenario - he's having it linger so long because the symptoms of the meningitis are adding on top of his normal neurological symptoms? Just the luck of the draw? Or should we be looking for zebras - maybe it isn't related to the VM at all, but rather a coincidence.

Whatever it is, he is absolutely miserable and can't get in to his neuro for a *month*. I say we should push to get a sooner opening, and in the meantime go see the Ear, Nose and Throat guy for the tinnitus. Or if it gets too bad, go out of town to a better facility where they can tell us what's going on. Any thoughts? Any insights? Has anyone had this, and if so, how did it turn out for you?

By lurkingforacure On 2010.06.04 17:44
Oh, mylove, I feel so bad for you. What a nightmare and so scary for you both.

We have never dealt with this but here is my two cents...

Menningitis is as you know an infection and in PWP any infection with its concomitant inflammation wreaks havoc on symtoms. If you google "neuroinflammation" you will find a rapidly developing field of research over the last decade or so such that more and more researchers are believing it to be a/the cause of PD. Basically an over-active immune system in the brain that goes amock for some currently unknown reason and cannot shut itself down. The University of Nebraska is actually developing a vaccine for PD that targets the brain's immune system and they say in their newsletter that is "reverses" PD. I don't know what that means in medical terms but it sure sounds good to my husband and me.

But back to your problem. Our experience (and research) has taught me that any additional inflammation from wherever in the body makes PD horrifically worse and meds ineffective. Ramping up the meds does nothing, and that is very scary. If you go on neurotalk (another PD forum not caregiver based) and search the PD forum on "infection" you will find several anecdotes from PWP who have literally been bed-ridden from an infected tooth, etc., for days to weeks. It takes a LONG time to get over it and the residual effects from whatever meds he has been given for the menningitis. Those meds may even be in conflict with his PD meds although one would hope the docs would not have scripted anything that would do that.

If it were me I'd try to make him as comfortable as possible, I know you have already been doing that, and give lots of plain old anti-inflammatories like aspirin (although some prefer NSAIDs). I'd probably also crank up the vitamin C pretty high to help him get over the final step, I don't know what the max dose for vitamin C is but sometimes my husband will take 3000-4000mg a day for a couple of days to either get over a cold or keep from getting the current crud from our youngest. Lots of fluids including green tea with lemon juice, cold or hot, however he wants it, turn on his favorite music, and no stress no stress no stress. Turn the phone off, put the dogs in the garage, whatever he wants, needs, or feels will help.

What might take you or I a few weeks to get over can take a Parkie months. Any menningitis is serious, I don't care what blood tests say. Good luck and I hope you both are doing better very soon.

By Emma On 2010.06.04 18:51
I know nothing about infections, especially something like menningitis, but I wanted to tell you that I am so sorry that you and shakydog are going through this. It sounds like lurkingforacure gave you some good ideas and advice. I will be thinking of you and hoping for a quick recovery.

By mylove On 2010.06.04 20:31
Thanks, guys. I knew that infections would upset the 'status quo' and balance that we'd achieved with his meds, but I guess I should have expected how drastically a brain infection would mess with things, in retrospect. It's hard to read things like "viral meningitis is a mild illness that you treat at home with fluids, ibuprofen and bed rest, and passes in 7 to 14 days" and then see him suffering with these up-and-down lingering issues nearly six weeks later. I know it's frustrating to him, and worrisome to us both.

Today's new symptom is "cotton wool spots" in one of his eyes. Nobody knows how it got there, not sure whether it's related to the illness or what, but again - could take weeks and weeks to pass.

It's graduation week for our daughter next week, and we have a ton of company coming, so it's been particularly bad timing, plus work for the both of us lately is just insane. I feel so bad for him, and I can't do a thing to relieve his pain. Evidently there's not a whole lot to be done but treat the symptoms. We will try the C - can't hurt!

He's just at the end of his rope, and I hope it passes soon. I am too. I went to the doc today myself for chest pain and persistent stomach pain that I know are due to all of the cumulative stress we've had in the last six months. He told me I should be 'taking 45 minutes a night to go for a long leisurely walk by myself". I laughed at him. :)

On another note, I read somewhere in my travels that viral meningitis, triggered as it is by another virus that somehow makes its way into the meninges or spinal fluid, has a higher incidence in individuals that have greater permeability of the blood-brain barrier, for one reason or another. Immunocompromised people, heavy drinkers, and people on certain medications can be more at risk. It makes us wonder if the meds were the carriers for the virus, since they're designed to pass easily through the blood-brain barrier in order to work. Interesting thought. His VM seemed to be triggered by a little old stomach bug (enterococcal virus), one of the most common viruses to travel that way (herpes and influenza are a couple others). Another good reason to be sure to follow all those good handwashing techniques!

By mylove On 2010.06.06 10:23
One more thing...

Lurking, thanks for pointing me towards Neurotalk for this one. I just finally got the time to surf through there to see what was there. And I found this gem on the blood brain barrier (BBB):

So, now it all seems pretty clear to me. If the mechanism of transmission of a disease like viral meningitis is that you have the basic virus (whatever it is) and also have the permeability and enlarged pores of the BBB that PD gives you, then you are at greater risk for those viruses to pass through to the meninges of the brain and the spinal fluid. Not meaning to frighten anyone, but that's some important stuff, right there. How many of us get garden variety viruses and don't think much of them? Maybe we should be told to be very careful around our PWP because those garden variety viruses could have other complications for our loved ones. It seems very like being immunocompromised, and maybe we should start looking at it that way, given the relative ease of things to pass through the BBB and into places we don't want.

By lurkingforacure On 2010.06.06 11:37
Yes, at our house we do everything we can to make sure daddy doesn't get sick. It doesn't always work, but we do our best.

And mylove is right...most of us with health get all kinds of bugs, colds, bacteria, but never know it because our immune system takes care of it before we even have a clue. It's only when our immune system is overwhelmed, and cannot get rid of the offender right away, that we begin to see symptoms like tiredness (our body's clue to STOP AND REST), achyness (again, our body telling us to stop and rest), fever, etc.

There is a book I read called "When the Body Says No" and it's all about how the body will send signals to us and when we ignore them things get worse. When we listen and take care of ourselves, they go away. This is a huge generalization of course and doesn't apply to everything (obviously, and if only) but it makes a lot of sense when one is dealing with a cold, flu, stress, infection.

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