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Need help for viral meningitis (looks like)

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Posted 8/22/2014 3:22 AM (GMT 0)
My new ND says, "yes," most likely meningitis.

I absolutely DO NOT want to do another lumbar puncture, as this would be my fourth, and I've had two spinal headaches. Plus, the last doctor who did a blood patch hit a nerve in my back.

So I can't get a definitive dx.

Can anyone give me suggestions? I was late today, and she didn't have a lot of time, but I'm seeing her again Sept. 2nd.

I'm also going to do a phone consult with my LLMD, not scheduled yet.

I'm not bedridden or anything, though I'm kind of clueless sometimes about knowing whether or not I should be.

I'm still having good days and bad days, and I walked the dogs yesterday, and it seemed fine.

Today is bad, though not so much pain wise.

I'm so sick of the doctor merry-go-round. I know what's going to happen. My LLMD will tell me to see a neurologist; the neurologist will tell me to see the LLMD, and so on. Since I had just gotten over a sinus infection, my LLMD thought it might be my sinuses, so he sent me to the ENT, who then told me that if I wanted to, I could go to the ER to get a lumbar puncture (he sort of casually mentioned this as he was leaving the room).

Anyone ever decided just to stop going to the doctor?

Margaret
Posted 8/22/2014 4:56 AM (GMT 0)
"Anyone ever decided just to stop going to the doctor?"

Yes, I have a chronic illness not related to lyme disease that I don't really want to get into. It took me years to get a drug that has an unearned bad reputation. And no, it's not medical marijuana. lol

It took months of tests and specialists. I basically couldn't swallow without aspirating. Not fun.

I finally just kept at my GP at the time, politely, yet persistently. And he finally gave in and gave me a long-term script for a drug meant for short-term use. I can eat pie now. PIE!! With ice cream!! I was on a liquid diet for 5 years. And between you and me, cheese pizza has always been one of my main reasons for living.

I could write a book here, but I won't. The bottom line was I got off the merry-go-round of GI Doctors, ENTs, speech language pathologists, and kept politely pestering my GP, until he suggested a drug I never even thought of. It worked really well, and the pharmacists can give me judgmental looks all they want. They're not in my shoes.

That's why I don't want to get involved with doctors right now if I can help it. There is no manual on how to navigate them so that the system benefits the patient!

Focus on what you have. Focus on your intuition. Deep down, you know what you need to get by and to get better for now.

I can tell by your post, you're very astute. I would guess well educated, as well. You've said what you want. You're not up to a lumbar puncture. You've had three! I don't know what that is, frankly, but it doesn't sound pleasant. Give yourself a break, if you can. Just a little one? :-)
Posted 8/22/2014 12:10 PM (GMT 0)
Even a lumbar puncture may not show the problem. Why do you think viral? Because Lyme definitely does this, and I'm positive I had it. The ER asked me to touch my chin to my chest. I couldn't lift my head at all without horrible pain in my upper neck. They gave me a migraine cocktail and a pregnancy test. Unbelievable! I didn't have any diagnosis then.

But evidently Lyme meningitis isn't terribly dangerous and mine did go away when I started treatment. My neck is still stiff and I have a decreased range of motion, but only mild pain.
Posted 8/22/2014 7:42 PM (GMT 0)
Taylor, I like the idea of going with your intuition.

AML94, I'm not a doctor, so I don't know for certain if it's viral or not, but it seemed to respond to supplements and also to Acyclovir. You can get viral meningitis from Herpes Simplex (I don't have the kind that's umm in the private parts).

I've also had some strange, long, lingering viruses with fevers and chest colds.

The ND told me that I had (or had had) the symptoms of meningitis.

Margaret
Posted 8/22/2014 11:20 PM (GMT 0)
I sure hope that you don't have viral meningitis!!
Just remember that Lyme causes meningitis symptoms too. Is your ND Lyme literate? Or just Lyme friendly?
Posted 8/23/2014 12:23 AM (GMT 0)
Well, according to the ND, she thinks it's very likely. However, I have been making progress by taking supplements and Acyclovir (yes, I think it is working), and I have called my LLMD to schedule a phone appointment. They haven't called back yet, but I didn't call his emergency line, bc at this point, I don't think it's an emergency. It was probably more of an emergency a few weeks ago.

Thanks, hon.; that's a nice thought, anyway. :) :)

Margaret
Posted 8/23/2014 2:43 AM (GMT 0)
Teragram, last October I got very ill with symptoms of meningitis. I had am MRI done and the doctors did all sorts of blood tests and found nothing. It was very depressing because I could not function from the neck pain and the horrible headaches. The headaches shot up from the base of the neck and at times I also had sharp electrical shocks inside my brain. I also had blurred vision and eye nerve pain. It was so bad that I had to take a leave-of-absence from work. The day I left work I took all of my possessions because I was sure that I was not coming back.

A week or two before the above I had gone to see my LLMD and he had prescribed Rifampin. I was so afraid to take it because of what it can do to the body and the herxes that I had heard people experience with it.

Well, I felt so sick that I started to take Rifampin. I don't even know why I started to take it since I didn't know it worked on headaches. I kid you not, within a few days, the meningitis symptoms disappeared. I could not believe that just a few days back I thought my life was over and suddenly I felt so much better. I was able to return to work two weeks later.

Since being on Rifampin the headaches and neck pain have been under control (gone away). There are times when I will stop all antibiotics for a few days to give my body a break and sure enough, the headaches and the meningitis symptoms begin to come back. I hate to be so dependent on Rifampin but at this point neither my doctor or I know of another solution. He cannot explain why Rifampin works so well for the meningitis symptoms but he says that if it works for me to then keep taking it.

My only bad side effect with Rifampin so far has been gastric issues and a slightly fatty liver. my doctor is unsure about the fatty liver though, since he says that an infection such as Lyme can cause that too.

One other thing...the MRI did show that my nasal cavities were inflamed and for months I had to clean my nose every few hours. I didn't have a running nose but always felt stuffy. Rifampin also cleared my nasal cavities.

I hope that this gives you an option to consider.

Post Edited (Healing98) : 8/22/2014 8:46:17 PM (GMT-6)

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