Re: Seizures,worsening behaviors

December 7, 2004

Theresa,

Your letter saddens me. Docs know (or should know) that many and

probably most cases of inflamed tonsils are related to EBV (eg, 1-3).

Most but not all strains of EBV are responsive to Valtrex. My experience

at TCH in Denver has led me to conclude that ENT departments make more

money from surgeries (eg, tonsillectomies, myringotomies) than would be

made from healing the subgroups of kids whose symptoms would be

responsive to Valtrex. In this climate, a physician is far less likely

to dare to venture forth and say, Let's try Valtrex for a week or two,

and if we don't see improvement, we'll try different approaches.

Furthermore, epileptiform activity and autism-like traits are associated

with EBV (eg, 4-5).

puresleep wrote:

>Hello Listmates,

>Thank you for all your advice and input,I am learning so much here and you all

help me so much by posting and sharing in laymans terms.I went to see the new

ped today,armed with many studies(Thank you!)and a videotape of my dd having her

" tics'and laughing and conversing with herself.To this peds credit she didnot

look at me like I had a third eye and listened but wants to consult w/the

geneticist before making any more referals.She did feel that

>the tics were absense?seizures and wants me to see a nuero after the

geneticist.She gave me a steroid nose spray because dd has enlarged tonsills and

adnoids.Has anyone used anything like this?

>She would not write any scripts for nystatin,or viral meds.

>I think if I could consult with another doc who understood these things,this

new ped would follow their lead.

>We live in Va,any recommendations for a doc to take dd to

>who would advise my ped so that insurance would hopefully cover some of this?

>sorry for the long post,I had suspected seizures but was not ready to hear it

and I am clueless about what to do about it

>could I please bother you for recommendations for an antiviral that might be

helpful ?and not complicate or worsen seizure activity

>And can Flinstones vits really help w/this defiency?

>thanks again

>Theresa

>

1: J Virol. 2004 Nov;78(22):12613-24.

Epstein-Barr virus infection in ex vivo tonsil epithelial cell cultures of

asymptomatic carriers.

Pegtel DM, Middeldorp J, Thorley-Lawson DA.

Department of Pathology, Tufts University School of Medicine, Jaharis Bldg., 150

on Avenue, Boston, MA 02111, USA.

Epstein-Barr virus (EBV) is found frequently in certain epithelial pathologies,

such as nasopharyngeal carcinoma and oral hairy leukoplakia, indicating that the

virus can infect epithelial cells in vivo. Recent studies of cell lines imply

that epithelial cells may also play a role in persistent EBV infection in vivo.

In this report, we show the establishment and characterization of an ex vivo

culture model of tonsil epithelial cells, a likely site for EBV infection in

vivo. Primary epithelial-cell cultures, generated from tonsil explants,

contained a heterogeneous mixture of cells with an ongoing process of

differentiation. Keratin expression profiles were consistent with the presence

of cells from both surface and crypt epithelia. A small subset of cells could be

latently infected by coculture with EBV-releasing cell lines, but not with

cell-free virus. We also detected viral-DNA, -mRNA, and -protein expression in

cultures from EBV-positive tonsil donors prior to in vitro infection. We

conclude that these cells were either already infected at the time of

explantation or soon after through cell-to-cell contact with B cells replicating

EBV in the explant. Taken together, these findings suggest that the tonsil

epithelium of asymptomatic virus carriers is able to sustain EBV infection in

vivo. This provides an explanation for the presence of EBV in naso- and

oropharyngeal pathologies and is consistent with epithelial cells playing a role

in the egress of EBV during persistent infection.

PMID: 15507648 [PubMed - in process]

2: Int J Pediatr Otorhinolaryngol. 2003 Oct;67(10):1075-82.

Noticeable differences in bacterial defence on tonsillar surfaces between

bacteria-induced and virus-induced acute tonsillitis.

Stenfors LE, Bye HM, Raisanen S.

Department of Otolaryngology, Institute of Clinical Medicine, University of

Tromso, N-9037 Tromso, Norway. larseric@...

OBJECTIVE: Oral and pharyngeal cavities harbor a commensal bacterial flora which

is kept in check by several innate and acquired agents. In this study, we

focused on the proportions in which some antibacterial moderators (lysozyme,

lactoferrin, IgG and S-IgA) coat the tonsillar surface bacteria in healthy

individuals, in patients with acute tonsillitisculture-positive for

Streptococcus pyogenes, and in patients with infectious mononucleosis (IM)

caused by Epstein-Barr virus (EBV). METHODS: Bacterial samples were collected

for aerobic culturing and immunocytochemical evaluation from the tonsillar

surfaces of eight healthy individuals (four males, four females; age range 16-22

years), eight patients with current AT (two males, six females; age range 16-29

years) and seven patients with IM (four males, three females; age range 15-21

years). The immunocytochemical assay was based on gold-labeled antiserum to

human lysozyme, lactoferrin, IgG and S-IgA followed by gold particle tracing in

the transmission electron microscope. RESULTS: During AT, a significant increase

in lysozyme coating (P<0.05) and lactoferrin coating (P<0.0005) of the bacteria

was noted, whereas the S-IgA coating was significantly reduced (P<0.0005).

During IM infection, a significant increase in lactoferrin coating was noted

(P<0.0005) whereas immunoglobulin coating was significantly reduced (IgG

P<0.025; S-IgA P<0.0005) compared with healthy controls. During IM, all

antibacterial moderators evaluated were significantly reduced compared with the

situation during AT. CONCLUSIONS: Noticeable changes in the local innate and

acquired bacterial defence system were observed during tonsillar infections,

particularly during IM.

PMID: 14550961 [PubMed - indexed for MEDLINE]

3: Int J Pediatr Otorhinolaryngol. 2002 Dec 2;66(3):223-6.

Detection of Epstein-Barr virus and subsets of lymphoid cells in adenoid tissue

of children under 2 years of age.

Endo LH, Vassallo J, Sakano E, Brousset P.

Department of Otorrhinolaryngology, State University of Campinas, Rua Guilherme

da Silva 281, apto 111 Cambui, Campinas 13025-070, Sao o, Brazil.

luiza_endo@...

Epstein-Barr virus (EBV) has been closely associated with undifferentiated

nasopharyngeal carcinoma (NPC) and T/NK nasal non Hodgkin lymphoma.

Nevertheless, the presence of EBV in non neoplastic lymphoid tissue of the

nasopharynx has been rarely investigated. In a previous study by our group,

using in situ hybridization to detect EBV in adenoids of children (2-13 years

old) resected because of nasal obstruction due to hypertrophy, we found EBV

genome in 72% of the cases. It was now intended to study the frequency of EBV

expression in adenoids from children that underwent surgical removal, belonging

to a lower age group (1-2 years old). It was also intended to establish which

lymphoid subsets are involved in this infection. Adenoidal paraffin sections

from 21 patients aged 1-2 years old (mean 1.6 years), 15 males and six females

were submitted to double labeling: in situ hybridization with EBER 1/2 probes to

detect EBV and immunohistochemistry to determine the lymphocyte typing of

EBV-positive cells (CD20 for B-lymphocytes, CD3 for T-lymphocytes and CD56 and

CD57 for NK-cells). Among 21 patients, seven showed positive lymphoid cells for

EBV (33%). In almost all cases, EBV-positive cells were also CD20-positive. Some

EBV-positive cells showed no labeling with any of the lymphoid markers, but in

no instance they were positive for CD3, CD56 or CD57. This study confirms the

preferential infection of B-lymphocytes by EBV, which in some instances can down

regulate the expression of CD20.

PMID: 12443810 [PubMed - indexed for MEDLINE]

4: Brain Dev. 2003 Jan;25(1):9-13.

Virological and immunological aspects of seizure disorders.

Eeg-Olofsson O.

Department of Women's and Children's Health, Section for Pediatrics, Uppsala

University, S-751 85 Uppsala, Sweden.

The brain is a symptom-producing organ, and one of the symptoms due to a basic

brain dysfunction is epilepsy. The pathophysiologic background is in most

epilepsies multifactorial, as different pre-, peri-, and postnatal triggers or

environmental conditions influence one or several genetic factors, where also

gender is of importance. One of the genetic factors is immunodysfunction, and

the trigger mechanism may be a virus infection. Viruses are the most common

agents to which the human being is exposed throughout life. The herpes virus

group is of special interest with respect to complications of the central

nervous system. Herpes viruses, especially herpes simplex virus type 1 (HSV-1),

human herpes virus type 6 (HHV-6), cytomegalovirus (CMV) and Epstein-Barr virus

(EBV), are capable of establishing latent infection and reactivating under a

variety of stimuli. In this review especially HHV-6 will be emphasized, as well

as CMV in relation to Rasmussen's syndrome. The immunological aspects will focus

on immunoglobulins, antibodies, especially the glutamate receptors, human

leukocyte antigens, T- and B-lymphocytes, and their respective interaction with

the antigen presenting cell. This course of events concerns the 'immunological

synapse'. Finally, reports on herpes virus genomes in the human brain are

discussed. A study on herpes viral DNA in brain tissue from patients operated

for focal epilepsy is briefly mentioned.

Publication Types:

Review

Review, Tutorial

PMID: 12536027 [PubMed - indexed for MEDLINE]

5: J Child Neurol. 2000 Dec;15(12):791-6.

Persistent preceding focal neurologic deficits in children with chronic

Epstein-Barr virus encephalitis.

Caruso JM, Tung GA, Gascon GG, Rogg J, L, Brown WD.

Department of Pediatric Neurology, Children's National Medical Center,

Washington, DC 20010, USA. jcaruso@...

Epstein-Barr virus encephalitis is a self-limiting disease with few sequelae.

Persistence of neurologic deficits prior to and after the acute illness has yet

to be described in children. We describe five children with persistent cognitive

and focal neurologic deficits due to chronic Epstein-Barr virus encephalitis

with various T2-weighted magnetic resonance imaging abnormalities. Clinical

features were a 9-year-old boy with aphasia and apraxia, an 11-year-old girl

with impulsivity and inappropriate behavior, a 17-year-old boy with

deterioration of cognitive skills and judgment, a 5-year-old boy with

complex-partial seizures, and a 6-year-old girl with obsessive-compulsive

behavior. All patients had elevated serum Epstein-Barr virus titers for acute

infection, with cerebrospinal fluid polymerase chain reaction positive for

Epstein-Barr virus in four patients. Three children were treated with

methylprednisolone with minimal improvement without changes on magnetic

resonance imaging. Epstein-Barr virus encephalitis can present with chronic and

insidious neurologic symptoms and should be considered in the differential

diagnosis of children with acute or chronic neurologic illness of unknown

etiology.

Publication Types:

Case Reports

PMID: 11198493 [PubMed - indexed for MEDLINE]

December 7, 2004

FWIW I'm convinced my tonsil issues (age 5 or 6 until I had them out at age 21)

resulted from mercury amalgam exposure. Interestingly, we went to the dentist

every 6 months (and I remember only one appt without any fillings) and voilá, I

had inflamed tonsils every 6 months...

S