Viral meningitis

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constantd
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Viral meningitis

Post by constantd »

Whelp, unfortunately you read that correctly. I was admitted to the hospital this past Sunday because of a terrible headache, neck ache, fever, vomiting, etc. I told them I was worried about meningitis, and of course they told me that "oh no, the likelihood of you having meningitis is really low." Hm..... mmmkay.

Once they got me back there and started IV fluids, ondansetron, etc., they still said it was unlikely to be meningitis and that they wanted to run a flu culture. They stuck that culture swab so far up my nose I'm pretty sure it went into my brain. A few hours later they returned to tell me that was negative and that we should proceed with a spinal tap. Luckily the spinal tap really wasn't that bad (birthing a child is way worse, as are gallbladder attacks.) An hour later the ER doc came in and said "By golly, you do have viral meningitis." Well duh. That's what I said when I came in here. It was funny because as soon as I had the diagnosis of viral meningitis the ER staff actually started to pay attention to me. Everyone was wearing masks all the sudden and I got wheeled into my own special isolation room. They only kept me for 24 hours since it was viral and really once I could hold down oral fluid I got sent home. It's now day 5 and I'm feeling better BUT I still have a headache and exhaustion, and am in bed 90% of the time.

I have of course done some light "googling" (haha) and unfortunately it seems like a lot of viral meningitis survivors had long term after effects like exhaustion, constant headache, memory issues, cognitive decline, etc. Has anybody else on this forum had viral meningitis?

The interesting thing is they base viral meningitis diagnosis on the fact that the CSF has higher levels of lymphocytes. This makes me wonder if somehow my body is trying to turn this inflammation of my meninges into some sort of autoimmune response. And if so, this means I probably will be left with chronic headaches, etc. Just great. I'm trying not to be a downer, but it's really hard. Considering I have lymphocytic colitis as well as lymphocytic thyroiditis, my odds aren't looking great.

Oh, and I'm pretty sure I caught the virus from my 1 year old daughter. She had horrible diarrhea last week and now a runny nose. I'm the one that changes her poopy diapers, so.... that would be my best guess. Because her immune system is better than mine she didn't end up getting viral meningitis and I did.

And of course to top things off, my diarrhea has been HORRIBLE. I stopped taking LDN about 2 or 3 weeks ago (was on it since March), and the diarrhea got worse once stopping. So maybe stopping the LDN was a bad idea? And Last week I was EXTREMELY STRESSED out over multiple things (including the election results), so I'm wondering if stress contributed to my immune system going wacko. I'm just so fed up with all of this. Any input appreciated. Hope everyone is doing well.

Katie
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Post by Lilja »

My sympathies, and hopefully you will recover quickly. I had to google "viral meningitus" and apparently the same virus can give children vomiting, diarrhea etc. It should pass after 7-10 days, it says. How frightening!

Best wishes for a quick recovery, Katie :smile:

Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
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Post by tex »

Hi Katie,

I'm sorry that you're having to deal with yet another issue. Motherhood is a tough gig, at times.

Yes, serious stress can trigger an MC flare, and it can perpetuate symptoms when a reaction is already underway. Stress also lowers our resistance to disease by weakening the immune system. Learning to control/minimize stress is a primary requirement for achieving and maintaining remission with IBDs. For many of us, it may be just as important as diet, or even more important.

Stress resulting from election results is a perfect example of out-of-control emotions, because despite all the damage caused by such stress, there is no way that the stress (or anything associated with it) is going to change the election outcome. As MC patients, we simply can't afford to worry about things that are beyond our control. The cost to our health is far too high.

If your case of viral meningitis originated from an enterovirus, remember that in addition to the diagnostic markers in the CSF, the lymphocyte levels in the mucosa of your intestines will also surely be elevated. That's the definition of lymphocytic colitis. I don't recall if you mentioned your vitamin D level in earlier posts, but be sure your vitamin D level is up where it needs to be to help prevent such things from happening in the future.

I hope you fully recover, and soon.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
constantd
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Post by constantd »

Thank you for your replies Tex and Lilja.

Well, the viral meningitis seems to be cleared up for the most part. I am just left exhausted and run down. And all the hard work I put into the last few months with weight gain is GONE. However, my watery explosive diarrhea has returned with a vengeance! Probably the worst it has been since.... well.... since the last time I had the norovirus. I am assuming this is because it was some sort of enterovirus that left my guts severely inflamed and over-reactive. I've been doing lots of soups, bone broth, bananas, etc. (all my safe foods). And taking lots of immodium and started cholestyramine again, and yet the watery D continues. I put a call into my GI doc today and left a message. I wonder if they are going to recommend another course of Budesonide. I would really rather NOT have to go that route. Does anybody else get this? When they get a stomach bug their MC flares excessively?? I swear I get a bug almost every year and it really sets me back in the GI department - sometimes for months. Sigh. I need to get this thing controlled so that I stop losing so much weight, and have energy to take care of my kid. I swear everything I eat just flies right through me.

And a few weeks ago I ended up having the long-awaited (6 months) appointment with the GI referral Doc at OHSU here in Portland. HA! What a joke. I show up for the appointment and it was a Physician's Assistant (which is fine but they told me I would be seeing a Dr.), and basically she told me I must have IBS along with my Microscopic Colitis. And that I should try immodium. I was literally laughing because this is what I waited 6 months for! Such a joke. So.... here I am asking you guys for any input.

I take my Vitamin D (5,000 IU), ReMag, Glutamine powder, Zinc carnosine, CHolestyramine (just started this up again too) levothyroxine, and LDN (started my LDN up again). And my Vitamin D was checked a few months ago and was 60. I am gluten free, dairy free, soy free, corn free, alcohol free, caffeine free, and lots of others. I'm just so sick of being sick and tired and needing to have a bathroom nearby at all times. Any other tips/tricks anybody can think of to get this gut back on track?
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Post by LauraAnn »

The first thing that came to my mind was to take a deep breath. You are going through some really serious issues. I have no advise to the physical aspects because I'm not qualified ( I still think of myself as a "newbee") but I got stressed out reading your story, so I know you must be too. You will receive some very wise advice here. Trust that it will guide you in the right direction. You are in the right place for help.
Laura Turner
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"There is a crack in everything. That's how the light gets in". - Leonard Cohen. 1934-2016
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Post by brandy »

Hi,

I recently kicked out of a 4 month flare but I had to eliminate all of the following in order to get back into remission:
Vitamin D (5,000 IU), ReMag, Glutamine powder, Zinc carnosine,
Suggest eliminate it all at once. Your vitamin D should be ok for 3 or 4 weeks as your levels are good. Eliminate ReMag and switch to either spray mag or epsom salt baths. ReMag is an oral mag that can cause D. I took both glutamine powder and zinc during my flare. I did better once I eliminated them and still have not resumed.

When you get solid stool I'd probably add the vitamin D back first. Then several weeks later if you want an oral mag try mag glycinate or retest the remag. I'm not adding the glutamine or zinc back.

I think you should see good results ditching the supplements (particularly the ReMag, zinc and glutamine) and adding the cholestyramine, keeping your thyroid med and adding the LDN as it helped you before.

For me it took ditching supplements and going to a mostly protein diet to kick out of 4 month flare.

Regards, Brandy
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Post by Vanessa »

Hi Katie,

I'm so sorry you are having all these troubles. I just wanted to chime in about the ReMag. It is a form of magnesium that does NOT rely on the gut for absorption. It's particle size is such that it is absorbed into your blood stream before it even reaches the gut. It is not known for causing diarrhea. Of course we are all different and respond differently to supplements.

It could be that you are completely saturated with magnesium so the body is getting rid of excess, although I don't think this is the case with you because of stress and recent illness. It could be what happened with Brandy, so lowering dose would have been correct option. Its one of those catch 22's. You are losing tons of mag through D, and want to keep up good quality readily absorbed version. Topical is a great option and like Brandy suggests, its always a good idea to take another look at supps. Were you ok poop wise on your dose of ReMag before your illness?

Keep us updated, I feel your fear and frustration. It seems we are walking a tight rope a lot of the time. I hope I haven't confused the issue.
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Post by brandy »

Hi Katie,

I think there is no one solution and sometimes you just have to keep trying things to get out of a flare.

I know that a lot of forum members swear by the remag but Dr. Dean suggests it can be problematic for those with gut issues.

http://drcarolyndean.com/2012/10/when-m ... -me-worse/

Scroll down to #11 from Dr. Dean's website. For the full discussion see #11. I am not familiar with the product but it sounds like ReMag might be contraindicated for someone with gut issues.

Per Dr. Dean

ReMag goes directly into the cells and will cause the muscles to relax and that can cause diarrhea. Also ReMag will detox the chemicals and heavy metals from cells and can cause diarrhea.
My experience was with Mag Glycinate not ReMag. Mag Glycinate is also not supposed to cause D. I had taken it with no problem for years (and also Mag Citrate when constipated.) I was very reluctant to give it up as it really helps me sleep.
I had already stopped all other supplements. I was really getting burnt out with the WD day after day after day. One day I did not take Mag Glycinate--did epsom foot soak instead--ate protein only that day (per Jean's regimen early on) and voila next day solid stool.

I am now able to tolerate Mag Glycinate again.

My experience is eliminate all possible supplements in flare and adopt few food regimen. Keep it pure and simple. Add things back very slowly after you are healing.
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Post by constantd »

Thank you Brandy and Vanessa for your input. Even though you seem to be contradicting one another, any information is helpful!! Brandy I do think you have a point. I'm sure that some people still react to the ReMag, especially when they are having a horrible flare like I am. And a few weeks leading up to getting sick with viral meningitis my stools were progressively getting more watery, so perhaps the ReMag played a role in this. Today I will go pick up epsom salts for foot baths I guess?? Do you just put it in a bucket and stick your feet in? But I do think going a few days with no ReMag is certainly worth a try. Heck, at this point I will try anything! I have a history of trying just about anything to get my watery explosive D to stop! I also think sticking to mainly protein is helpful as well... I have been TRYING to do this, but I end up just feeling starved and probably not getting enough calories.

This is all so frustrating. I feel like every time I start to feel a little better energy wise and begin to put weight on ( and my stools begin to firm up) I am just hit with another huge setback. Such a disheartening and frustrating disease. This disease has changed me. I used to be an energetic outgoing positive person who loved their career and was able to interact with people and be social. Now... since having a child I have been unable to go back to work because of how severe my colitis has gotten and my need to always be near a bathroom. But I always try and tell myself that it could be worse, right? And then I start to feel a little better.

Thanks,
Katie
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Post by brandy »

Hi Katie,

I think a regular bucket would work fine and be the most economical. I ended up getting this from smile amazon. https://www.amazon.com/Inomata-Foot-Det ... B002TCMCE4.
I think I put 1 cup of epsom salts in bucket, put water in pot on stove, but bucket by chair by tv, when stove water was hot I poured it into the bucket my chair by tv and waited for it to cool until I could put my feet in.

There are some motorized foot massage soaking machines but they seem to have bad reviews and several said they could not be used with epsom salts. It seemed like there would be storage/lifting issues also with the motorized spas.

The foot soaks seemed more manageable than taking the time for a bath. When I did a bath I put 2 cups in the bath.

If you have to eat some rice/potatoes do what you need to do to keep up calories. That is important too. Still and all, I consistently do better protein only for a day or two when I am struggling.

I thought I would clarify my experience with the zinc and glutamate. There are a ton of scholarly studies showing zinc helpful for IBD's-D, baby D, etc. I was taking neither before flare. I added both in during flare. Took both for about 12 weeks maybe a little longer. I could see no difference despite all of the positive glowing scholarly studies on the internet. I suspect in my situation the oral zinc and L Glutamine probably just irritated my gut some more. As I was having WD I wasn't absorbing them anyway.
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Post by Gabes-Apg »

Virus activity is the immune system struggling to cope - as per the info in the warts post of DebE13 this week

the immune system needs Zinc, Vit C to fight virus activity
I found this article that lists menangitis and provides some great natural ideas to help the immune system clear the virus
http://www.naturecures.co.uk/virus.htm

hopefully there are some good MC safe option in the list for you...

iherb have great liquid zinc ionised drops that absorbed really well (bit like the ReMag)
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Post by brandy »

Hi Katie,

As you know it is a holiday week in the US and I think the forum is slow due to the upcoming holiday. You have really great support from Lilja, Tex, Laura Ann, Vanessa, and Gabes. We've all walked in your shoes. I'm one of the ones that can't tolerate vitamin C as a supplement. Some folks can. I believe there is one version that is gentler on the gut but I can't remember the version.

The cholestyramine should kick in in a couple of days. I think Polly says to make sure to give it a 4 week trial.
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Post by Gabes-Apg »

Vit C wise - vegetables are a great resource of good usable Vit C

cauliflower, Kale, broccoli, sweet potato,
Gabes Ryan

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constantd
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Post by constantd »

Thanks for all the encouragement Gabes and Brandy -

Gabes I do agree that I probably need some zinc and vitamin C for recovery from this virus. Vitamin C, however, definitely gives me diarrhea even when I am feeling good, so I'm definitely going to avoid that one for awhile. The good news is that the virus seems to have passed almost completely, just leaving me with really ticked off intestines in its' wake. I'm really hoping starting the Cholestyramine up again (had good luck with it earlier this summer) will be the thing that kicks it to the curb. Granted, when I was using the Cholestyramine earlier this summer it did take almost 3 weeks of use before I noticed improvement. But the reason I stopped is because I have very low cholesterol to begin with and I was worried about it affecting my levels. However, at this point I don't really care - I just want the watery D to stop.

Hope you all have a great week, and for those of you in the US, Happy Thanksgiving! I will be attending dinner at my Aunt's house where I am sure I will only be able to eat 1 or 2 safe foods there. Should be interesting!
constantd
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Post by constantd »

Good news: my stools have changed to semi formed and only 2 a day in the last couple of days!!! Not sure what helped but I will take anything I can get! Let's hope this continues. I've never been so excited about my stools before. Happy Thanksgiving everyone.
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