VM - 30 spinal taps- 17 hospitalizations later

Years of dealing with multiple positive spinal taps with high white counts, up to 900 WBC's, protein, and PCR's indicating viral herpes zoster, countless head aches, nausea, photophobia, and memory loss, confusion, and tingling and bilateral numbness on ny face, arm, leg, along with fatigue, back- neck pain, and doctors looking at you as if surely you are exacerbating the symptoms ------- does any one else know this feeling?

I cannot fake the WBC's, anymore than I am faking the pain

13 Replies

  • Hi sopie.

    Gosh that is a phenomenal amount of times to be unwell with VM and to have had to have so many lumber punctures and hospital admissions! Have the Doctors considered reasons why you are contracting VM such an extreme number of times? I know for some on here who have had repeated Episodes of VM that 'Mollarets' has been diagnosed and it has sometimes meant that continuous anti virals have been prescribed to prevent against further episodes occurring. I am wondering what country you are living in as I note you refer to spinal taps whereas here in the UK most refer to them as lumber punctures? If you are from the UK I would suggest that you contact the Meningitis Trust helpline because the may be able to provide you with some advice as to why you are getting it so frequently and what perhaps needs to be checked out. How long has this been happening for and when did it all start?

    Best wishes

  • I went through immunoglobulin infusions once weekly for 3 months about 5 years ago and have not been hospitalized since. The infusions cost over 3000 dollars just for the medicine, for each weekly infusion. I took Vivagoblin, which is now illegal in the US. I take acyclovir daily now. I do believe the infusions did help. My immune system was low and antibodies were very low and continue to be so. I was told the disease has caused my immune system to become fatigued and my body cannot catch up. However, I still deal with days of headaches, and being incapacitated often, but have learn to treat myself at home. Yes, it has been called Mollarets meningitis, but the doctors here in the US have very little understanding. I actually found the literature on Mollarets Meningitis, and gave it to the doctors. I have found, after being treated by neurologist, infectious disease doctors, and internal medicine doctors, this seems to be little understood. I take the literature with me, but I always hear, I have never treated this before. One doctor had told me I qualify for disability due to this, but have never pursued this venue. I am a RN and find, since many doctors don't understand it, they seem to underplay the significance. This web site has help encourage me to understand I not crazy and I am not imagining this, and that it is real, as others too have had some of the same symptoms.

  • Gosh you have been through such a lot and I am now realizing it all started a fair few years ago. I think it is pretty much the same here in the UK with very little knowledge of Mollarets and the diagnosis not being forth coming for those who have it and like you some I think have had to research why they were getting so many bouts of VM and produced there own info to inform the doctor. Here with any type of meningitis it is still hit and miss as to whether it is recognized and whether the long term effects are accepted. Organisations like Meningitis Now do so much to educate and inform and for us in the UK provide brilliant support too. Thnak goodness you found this website and it has been able to reassure you that what you are going through is valid.

    Best wishes

  • Thank you so much for talking with me! I have never had anyone to understand before. I was in ICU 5 times and felt like people --even my own healthcare colleagues -- seem to hint that I was making this up somehow-- others rejected me as if it contagious and they were going to get it so at times I felt abandoned-- I learned not to tell anyone or talk about this to anyone!

  • Yes similarly I am met with lack of understanding from professionals but also friends etc. Friends have disappeared from my life, and because I don't have a physical disability, the frontal lobe brain injury I have been left with is invisable and therefore to most - doesn't exist! Likewise I am made to feel I must be making things up!

  • I don't know you and you don't know me, but I KNOW what your feeling, and please know I understand!,,, -- I take it back we do know each other perhaps better than many in our daily lives!!!

  • Thank you. This forum has been very understanding and supportive because we are all living with the impact of meningitis. It's good to meet another person who's experiences give us an understanding of each other that those who have known us for years in our actual lives don't have.

  • It's been 8 years for me and I've been sick and confused ever since. Can't find doctor who can help me. They underplay everything. I often think I'm crazy or I'm imagining things.

  • U are not crazy. I understand. Have u read my post? They explain what I have been through. Would like to hear from you, if you have had like experiences.

  • Yes I'm sort of technologically impaired. And this confusion seems to create difficultly navigating the web. At times. I will get back to you when I've found your post. Again thanks for your replies. I'm so relieved to make this connection with you and the others.

  • Hi sopie, and thanks for replying to my other post.

    Wow, that must be a world record of spinal taps and hospitalizations, though I'm sure it's a record you don't want to hold. I, along with a few others on this forum (5 of us I think so far, but I figure that's not the true representation), have been diagnosed with Mollaret's and as you know, there is SO little out there on it, one can feel just as much at sea after the diagnosis as before. In fact and like you, without this forum, I'd possibly have lost my mind and been convinced that I'd been diagnosed with a made-up condition as my medic pool and complementary-support network (God bless many of them I should say) looked at me blankly when I first gave name to what I was suffering from.

    I know it helps little but yes (as in our other post) to virtually all the symptoms you describe though the shock waves as you walk, drive, etc are a new one for me. I've been living with the diagnosis less than a year so am a relative newbie to handling the condition. I opened a post a few months back on Mollaret's which may be helpful in some ways (which I really do need to update) though I have taken much strength and counsel from Jonathan's (Jonad724) postings of how one can deal with Mollaret's and what the future may hold. They are really worth a read, and thanks to Jonathan for flying that flag. As StrawberryCream says too (and putting aside the legal definition of diability for a spell), it can be hard to evidence how this can affect your everyday life to others, but I trust you can take some solace than you're not alone and more of us than we'd like are finding ways to live with post-meningitis effects, and for some of us, that's the blinking thing coming back again (and again...).

    I do however, believe that others' experiences can give us hope till we can progress through to a position of emotional, physical and cerebral acceptance. There is a new normal out there to be had, and a lesser frequency/severity of recurrence I'm sure of it, and we can help each other find it. We'd love to learn from you too! You said that you've had to find ways to treat yourself and are probably one of our experts now! We're here for each other and can be an ear for (non-medical) advice and counsel. Please share back any learnings :-)

    But you're not alone, and if I had a $ for each time someone looked at me like I was exacerbating the symptoms, I'd not need to work again! Sadly the judgments are not followed by cash, mores the pity. X

  • Thank you for your post and sharing, I wish there was some way we could help enlighten the medical community into this disease, and hopefully get some attention as to the best way to manage this condition. I have learned more reading these post than I have been taught or informed by the numerous doctors I have seen over the years. So much money spent in care, and so much of that care was wrong.

  • Thanks, I know so well what you just said.

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