Infection of the Cribiform Plate – very VERY ill. 30 year history.

[EastCoastChronic]

Hi Terri:
I fear I might be one of the sickest patients to ever reach out to you.

I became abruptly disabled 30 years ago at 27 years of age with explosive severe bilateral buttock pain, have used a wheelchair ever since. I had been an athlete and graduate student at the time. I underwent extensive diagnostics for many years and was misdiagnosed or dismissed by major medical centers. One doctor, a physiatrist in NYC, who finally led me to the dx of the AVM, has stuck by me (via correspondence) for the last 20+ years, , and I just see my PCP for routine problems as he threw his hands up in the air years ago.

I have undergone several difficult surgeries ( bilateral SIJ fusion, sciatic neurolysis in which a “tortuous AVM” was removed from within my sciatic nerve, etc), and have a plethora of systemic issues, including Bells Palsy, severe neuropathic pain, severe autonomic issues, flu-like symptoms, 25 years of night sweats, swings in Blood Pressure, hoarseness, chronic UTI’s, BV, yeast, cognitive difficulties, etc.. My history is long and involved, which I could send to you under separate cover.

Now, at age 57, I never had a career, children or fulfilled any of my dreams. I was dx’d w/ various “syndromes” and issues. After the first 15 years, and mutilative surgeries, I gave up on seeking medical resolution and swam on days I could. I was homebound a lot, but also pushed myself to get out when I could. I suffered headaches for the last 10 or so years, mostly ignoring them until about 4 years ago when left sided facial numbness accompanied them and the HA’s became recalcitrant and severe. Local neuro had me on all kinds of meds and keeping charts to no avail. NEVER once asking me if I was HSV positive. Late this past fall I became acutely ill, with abrupt onset of Small Fiber Neuropathy symptoms, severe autonomic symptoms, episodes of profuse sweating, inability to regulate my body temperature or blood pressure, night sweats with extreme drops in BP (70’s / low 40’s or high 30’s). I have been mostly homebound since last Fall and am very, very scared.

Mid-winter I had a huge outbreak of HSV2 on the bridge of my nose. I had had this several times previously, but was treated with Abx, and it was never swabbed until then. I was given a course of valcyclovir and now take 500 daily. I am very, VERY ill, and very scared. My family and friends are extremely concerned. early march I was finally referred to seen the top Neuro at a nearby Medical Center, who did testing for SFN ( normal IFND, some rare axonal swellings), and then dismissed me – For a while this winter I wondered if I had a toxic neuropathy from so much Macrobid and Cipro over the years. Since I am SO sick, at the expense and generosity of a friend I I have also recently seen a “Lyme Literate Doctor”. Nearly every single day I am in 10+ neuro pain along with autonomic issues. I have wanted to go to the ER nearly every night in the past several months either due to pain or due to just feeling unwell.

Apparently most of my positive bands are also cross-reactive with Viruses. This got me wondering. I started reading the sparse information and papers on Neuro complications of HSV…. I think I have been suffering a festering encephalitis for YEARS.

I am wondering if ALL of this… ALL these years, was due to HSV2. In my mid-30’s I could never ever get rid of infections of yeast, BV, UTI’s, etc. I never recall ahveing a genital outbreak, but I have a tiny, small chronic vulval fissure that was dx’d HSV2 after many years several years ago. I was given prophylactic Valcyclovir at that time – which I never took b/c I never had “outbreaks” and did not want to get sicker from side effects of a drug I didn’t think I needed. Post menopause, it has been chronic UTI’s..

anyhow, my entire history is better presented in a writeup and list of symptoms I recently prepared for the Lyme doc.
Today I found the Sasadeysz and Sacks paper, and the quote “Infectin of the cribriform plate and overlying olfactory bulb may lead t a less common, potentially lethal form of ….”. Also in that paper the information about esophagus involvement rang true.

I am tough and it is COMPLETELY out of character for me to not spend my summers sitting lakeside and being in the water. All of our summer holidays ( Memorial, July 4th and Labor Day) were spectacular weather and I was in bed. All my friends were on the lake. For the last year either I am homebound from severe neuropathic pain or severe flu-like symptoms, chills and or sweating.

I live in the middle of nowhere, funds are limited and travel is difficult. Please excuse the lack of well organized writing; my cognitive abilities, memory, etc have declined dramatically.

Thank you for your insights..
I am feeling VERY VERY hopeless about the prospects of ever enjoying even simple pleasures again. I cannot even successfully go to dinner without episodes of sweating and sounds getting muffled, confusion, etc

• This topic was modified 7 years, 6 months ago by EastCoastChronic.

[Terri Warren]

It is very sad to read your post. I’m so sorry you’ve had such a miserable time. I’m going to stick to the herpes part because I really know nothing about all the rest of the things that you discuss.

You mentioned having a huge outbreak of HSV 2 on your nose? How do you know that is HSV 2? Was it swab tested? Having HSV 2 on the nose would be really rare though not impossible for sure. I have the same question about your genital HSV 2? Diagnosis, method, date?

If you are asking me if I think all of this awfulness could be herpes related I would say very very likely not.

Terri

[EastCoastChronic]

Hi Terri:
Yes, as I said in my first post

“Mid-winter I had a huge outbreak of HSV2 on the bridge of my nose. I had had this several times previously, but was treated with Abx, and it was never swabbed until then. I was given a course of valcyclovir and now take 500 daily.”.

I have had these outbreaks on the bridge of my nose and forehead for years, misdiagnosed and given antibiotics.
Swabbed this past winter, HSV2

Genital: never remember having an outbreak, but have had a fissure that never really goes away. Finally swab tested in ’09 and HSV2. I was given Valcyclovir, but never took it – hd NO idea of the neuro complications of HSV and I was dealing with failed surgeries ( Sacral fusion) etc.

The paper I referred to has nearly all of the symptoms I have been dealing with all these years, Including severe disabling sacral nerve pain, Bells Palsy, esophagus issues, neuropathy and now autonomic issues. I have no doubt i had infection of the cribriform plate. I have barely been out of the house since this falls onset and the huge OB mid winter. I repeat, I am VERY sick.

Your wealth of knowledge and insights would be appreciated. Also, could you provide some names of anyone in the NE/Midatlantic who might be able to help? Or is there no treatment at this point?

Thanks f=or this service….

[Terri Warren]

I sorry but I don’t know of anyone in your area that could help you.
I am assuming since you take 500 mg of Valtrex daily for your nose outbreaks that you have not resolved your medical issues with this medicine, so I’m not thinking it is going to at a higher dose but you could try it. When people have concerns that a particular symptoms is related to herpes, we encourage the use of antiviral therapy to see if we can reduce that symptom with herpes treatment. That isn’t working for you so I’m not clear at all that these problems are being caused by herpes but you could certainly speak with your physician about trying other herpes medication to see if this might help.

By the way, we don’t feel that Bell’s Palsey is necessarily related to herpes any more. If you are reading an article by Steve Sacks, it must be very old as he has been dead for probably 15 years now.

Please share your thoughts about all of this with the physician taking care of you now.

Terri

[EastCoastChronic]

Thanks:

My PCP and I both think this may be severe disseminated HSV.
I cannot believe you do not know any ID/HSV specialist in the east for referral.

[Terri Warren]

Well, good, I’m so glad you’ve come to an answer for your medical situation!
There was a herpes specialist in New York, but he retired. I’m not on the east coast so I don’t have much occasion to meet physicians there. I do know an ID/HSV doc in Houston and one in Birmingham, AL but to be very honest, herpes specialists are few and far between.

Best of luck to you!

Trri

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