Re: Herpes, GI, & Seizures - Connection?

[Guest guest]

In a message dated 1/23/2006 7:07:54 PM Eastern Standard Time,

binstock@... writes:

> You might consider getting

> the article online or via interlibrary loan, and then giving it to the

> doc *ahead* of your visit.

>

>

>

, you must be one of 's angels -- thanks so much for the

information. I'll see what I can do. I should've known you'd find something to

hit

the proverbial nail on the head. Thanks again!!!!

Nina :-)

Ps -- thanks for the advice about when to share the information with the

doctor. It now makes sense not to blindside him but rather give him food for

thought. He's really a great guy, too, so I'm hopeful he'll approach this with

an

open mind.

[Guest guest]

Nina,

During a time when you're not changing therapies and the seizures have

continued, trying Valtrex might be worthwhile. Trying Valtrex is far

easier than obtaining a brain biopsy or a PCR of CSF, but a doc who

hides in safety may not dare try Valtrex. You might consider getting

the article online or via interlibrary loan, and then giving it to the

doc *ahead* of your visit.

1: Neurology. 1997 Feb;48(2):425-30. Related Articles, Links

Adult-onset temporal lobe epilepsy associated with smoldering herpes

simplex 2 infection.

Cornford ME, McCormick GF.

Department of Pathology, Harbor UCLA Medical Center, Torrance 90509,

USA.

A 40-year-old man with chronic genital herpes simplex infection

developed partial complex temporal lobe seizures of insidious onset,

with EEG and MRI evidence of a unilateral temporal lobe destructive,

atrophic process. Extensive workup did not reveal an infectious

etiology. Three years of escalating number and severity of daily

seizures with memory loss led to temporal lobectomy. Histologic study

revealed active, low-level viral infection in the resected hippocampus

and temporal lobe cortex, with immunohistochemical evidence for

infection by herpes simplex 2, principally in neurons. In situ

hybridization confirmed the presence of herpes simplex virus in neurons.

Anticonvulsant-resistant seizure episodes began to recur several times

daily soon after surgery, but the addition of acyclovir to the treatment

regimen resulted in a substantial reduction in seizure occurrence,

maintained for the subsequent 2.5 years.

Publication Types:

* Case Reports

PMID: 9040733

Chnhdh@... wrote:

>I was doing some quick research on our son's first outbreak of sores inside

>his mouth (which the ER doctor explained was a latent viral infection

>outbreak), and I ran across information indicating that herpes virus HSV-1 can

be

>connected to Bells Palsy and other neurological disorders and that HHV-6 &

HHV-7

>can trigger autoimmune disorders.

>

>Question: Given that our son is being treated with depakote for seizures and

>6MP for colitis, might I have run across an underlying cause for the seizures

> & colitis that can be addressed medically? Before I " chase my tail " doing

>all sorts of research, I thought I should consult the experts (y'all). :-) I

>mean, is this a " duhhh " moment, or can somebody point me to some research &

>treatment options that I can share with my son's mainstream medical

professionals

>in an effort to persuade them to address the underlying causes rather than the

>symptoms of his medical diagnoses.

>

>I was looking into Valtrex, etc., but there's NO WAY I'll be able to persuade

>these doctors to prescribe any of those without some research to back it up,

>especially since he's already on some pretty serious med's that can cause

>kidney & liver stress, not to mention the immunosuppressant qualities of the

6MP.

>

>Heck, I can't even talk them out of an LDN prescription.

>

>This is so hard....

>

>Any suggestions and insight shared will be greatly appreciated.

>

>Sincerely,

>'s Mama

>(Nina) :-)

>

>

[Guest guest]

Char,

This is sort of long...sorry...

You and your son are way ahead of me and mine on this road. He's only been

on 6MP for a little over 2 months (long enough for it to take effect and kill

our son's immune system).

Looking back at my son's journal, the 6MP was first given on 11/16/05 and the

24 hour EEG took place on 11/22/05. Certainly those six days of 6MP didn't

cause the abnormalities that showed up on the EEG??? Oh well, I guess that's

another question for the GI guy tomorrow ! :-) Our son's EEG was VERY

abnormal -- not just the typical " spikes " they look for. He was seizing (is

that a

word?) pretty much the entire time he was asleep and many times throughout

the day.

I've got to tell you, my chances of talking these guys out of Valtrex are

slim to none, but I have some good questions to ask them at least. Thanks for

the information on CMV you gave below. I ran across it while researching last

night, but now that you've put an arrow over it, I'll be sure to do some more

research in that area.

Regarding the viral titers (herpes and CMV), we haven't had those

checked....YET ! I'll be sure to put that on my list for tomorrow too. Thanks

so much

for the " heads up " on this as well, Char.

I'm sorry that you were more help to me than I was to you. If I am able to

pull a rabbit out of my hat & get that Valtrex and/or a switch from the 6MP,

I'll be sure to post to let you know how the conversation went & the research I

used to back up my position. Maybe if I'm successful and share my story,

you'll have the same luck with the rabbit in your hat.

Thanks again for the info,

's Mama

(Nina)

In a message dated 1/24/2006 2:19:06 AM Eastern Standard Time,

imbidhappy@... writes:

> Hi!

>

> Just interested in your post because my son is also on 6-MP and has

> developed seizures in the past year. If you try this would you let me

> know if it helps his seizures. My DAN doctor is very conservative in

> trying anything beyond the CSB basics (like Valtrex).

>

> My son's viral was high for HHV-6 but he has not had cankar sores, but

> they are common in my family which has the multitude of Auto-immune

> related problems...

>

> I have also wondered about CMV since my son's titers are high for it

> too and once posted some information related to 6-MP and this

> virus getting out of control...if I remember right. Does your son have

> high CMV too?

>

> Char

>