West Nile/Lyme from book: Lab 257 Re: Son POSTIVE for CHRONIC WEST NILE VIRUS

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http://books.google.com/books?id=aLyWOYcC3zAC & pg=PA31 & lpg=PA31 & dq=Lab+257+west+n\

ile & source=bl & ots=YqBzQkO8M5 & sig=YLNy1IOXTiNhbHaHADLZeq3fetc & hl=en & ei=UpXrSsidFI\

fuMeuunIQM & sa=X & oi=book_result & ct=result & resnum=10 & ved=0CB8Q6AEwCQ#v=onepage & q=L\

ab%20257%20west%20nile & f=false

I've not made my way through this whole book as of yet but working on it slowly.

Thought perhaps some might be interested in these pages regarding West Nile.

It's all too sinister to wrap one's brain around.

Suzan

>

> Dear Listmates:

>

> I just received my son's test results from CLONGEN LAB in land and my son

is POSTIIVE for West Nile Virus.

>

> He was so glaringly red hot positive that his result was TEN times the

control. The lab said he WAS the control.

>

> I have the book The Polio Paradox. I collect books having to do with

infectious diseases, vaccination, etc. and this one caught my eye. I'd only ever

had time to skim it but I came upon a page describing a Post West Nile Syndrome

about a year or so ago. The notion of a CHRONIC form of West Nile was new to me

and over the past year and a half I've wondered if this might be a part of my

son's disease picture. I'd mentioned it to several of his physicians over the

years and of course they rolled their eyes at me. Why wouldn't they? They are

always rolling their eyes at me.

>

>

http://books.google.com/books?id=t8i4e_q3Gj0C & pg=PA301 & lpg=PA301 & dq=Dr.+Bruno+ch\

ronic+west+nile+virus & source=bl & ots=i24k6ynk-I & sig=p8b3D-18SMUxn5ZRvNyKzS6g9W0 & h\

l=en & ei=baPkStqrNofstgOF7sH6CA & sa=X & oi=book_result & ct=result & resnum=2 & ved=0CA8Q6\

AEwAQ#v=onepage & q= & f=false

>

>

> http://www.prohealth.com/me-cfs/library/showarticle.cfm?id=3938 & t=CFIDS_FM#

>

> When I saw West Nile Virus on the menu at Clongen Labs and that it would be

run via REAL TIME PCR, I jumped at the chance to explore this further. My son's

doctor signed the req. without blinking and yet when the lab received the

samples they truly felt the West Nile test was not warranted explaining that it

was a self limiting disease and that testing for it would not provide useful

information. I didn't want to challenge them and so reluctantly agreed to remove

it from the requisition. That night I could not sleep. I was obsessing over the

WNV test and I knew then that I HAD to insist it be run. I sent the lab the

following links and they admitted it was an intersting possibility. I asserted

that I wanted the test put back into the requisition and they ran it yesterday.

>

> The entire lab was blown away by the results. They ran the assay four times

via Real Time PCR to ensure the results were correct. Each time, a red hot

positive resulted. Then they ran it again via regular PCR and again, got a very

strong positive.

>

> On our farm in Florida, Aedes Aegypti mosquitoes abound. Their long

thigh-high, black and white stockings are their trademarks. Whenever my son

sustains a bite it is followed by an enormous 3 " to 4 " red, raised welt which

takes DAYS to resolve. We have all been exposed to West Nile. All of my horses

showed antibodies to West Nile but were never vaccinated for the disease.

>

> This is uncharted territory. The CDC does not recognize CHRONIC West Nile. If

my son's physician were to report it as it IS a reportable disease...what

exactly do we report? Hi, I'd like to report a case of chronic West Nile Virus.

They would laugh her off the phone. There is no ICD-9 for this either.

>

> And what experience, if any, do any of the lyme literate docs have with

treating both Lyme AND active West Nile Virus in the same patient. And how many

other Mothers and Children might be suffering from this in the way my son is

suffering and yet their doctors assume there is no such thing or even a remote

possibility of ACTIVE West Nile Infection....assuming it a scientific

impossibility. The lab thought this was the case.

>

> My son is also positive for EBV and HHV-7 but not 6.

>

> So viruses are obviously playing a HUGE role in his overall disease picture.

>

> Please pursue this with your physicians. After seeing this in my son I regret

that I did not push to get this done earlier as it had been on my mind for a

very long time. I even asked my neighbor in Florida if there was such a thing as

Chronic West Nile so it's been ping ponging around in my head for such a long

time.

>

> I shudder to think of the months and years that would have passed without this

ever being detected as NO doctor would have ordered this for my son. Not in a

million years.

>

> I feel almost paralyzed with fear. It seems impossible that my small child of

12 years old can have all of these microbes actively infecting his precious

body. It seems surreal like a terrible nightmare. Lyme, Mold, EBV, HHV-7, West

Nile Virus, possible Babesia and Bartonella. It is too horrible to imagine or

wrap my brain around. Not to mention my son's genetic weaknesses.

>

> But just like the day I received his CDC positive Lyme test from

IgeneX......as devasted as you are, there is a wave of relief which washes over

you, that you have received yet another crucial piece of the puzzle.

>

> A friend mentioned the possibility of using LDM-100 and I did find one

reference/blurb about a Dr. kson in Gaineville, Florida who has used LDM-100

in the treatment of West Nile in a teenager. Oddly enough this was my doctor for

a brief period while we were in Florida.

>

> I want to stress that we left Florida in late October 2007. The last exposure

my son ever had to Aedes Aegypti was in the summer of 2007. Since that time he

has not been bitten again by these mosquitoes. So there is absolutely NO

possibility that this is a recent or acute infection. This is a years long,

progressive and chronic infection.

>

> We have tested for CMV, Herpes 6 and 7, EBV and West Nile Virus. My son is

positive for EBV, HHV-7 and WNV.

>

> Are there any other viruses I should test in addition to those above. A friend

mentioned coronavirus, parvovirus, etc. Help.

>

> A friend mentioned the possibility of getting a study organized to further

explore the possibility of West Nile Infection in more families/children. I

think this is critical.

>

> And so the lesson here is: Mothers/Parents PERSIST! Follow our God given

Mother/Parent Instinct! Regardless of what the professionals and mainstream

scientists/doctors tell us....persist! If they say it's not possible. Persist!

>

> Suzan

>