RE: Mack

[Guest guest]

Joe:

Can you say more about the RSV immunization

[Guest guest]

Joe and ,

My son's fevers started at 15 months directly after the MMR vaccine.

HOWEVER, my son is now almost 7 years old and he was cured with an adenoidectomy

and

tonsillectomy when he was 2. It took one year after the tonsillectomy to

completely get rid of every symptom. The fever was the first to go. Then he got

stomach aches (which he had never had before) along with the joint pain. It

seems over the course of that year he still had the cycles but there was NO

fever and it seems that he had to endure " every " textbook symptom of in

order to have it finally get over with. Almost a full year after the surgery he

had his temp to " drop " one day while sitting on the couch. His face turned

blue all around his mouth and his teeth were chattering. I called 911 but as I

spoke with them his temp leveled back out. He started crying and said

" nappy " . I put him down to sleep and sat beside of him for almost four hours

while

he slept. When he woke up.......we've seen nothing since. Now that is to say

that I still worry every time that he gets a temperature that it is starting

again! I think it is gone......whatever it was. I would give anything to know

why we had to endure it and if I could have changed something in our lives

to have avoided it. I have lived through it and am at the other side with a

perfectly healthy motorcycle riding, t-ball playing, soccer loving boy. I have

NO idea why he had it. I do know that the T & A cured him. I have NO doubt

about that.

I'm telling you this because I do believe there is a " trigger " that causes

this. However, I think it is different for every one of these children. I think

it is an environmental trigger. Meaning perhaps there is a dormant gene of

some sort in their bodies that when triggered by an environmental overload

(whether vaccines, fire ants, severe pneumonia, etc) makes that child more

prone

to immune issues. Sounds strange, but if you really read the archives you

will find that a whole bunch of us has an " environmental stimuli " if you will

that triggered our child's fevers. I would love to tell you it was easy as

immunizations, but I've walked this path for too long. Each story is different,

yet the outcome is the same: .

The very sad part is that I have NO answers. I still have a lot of

unanswered questions. However, I can promise you that it will end at some point.

I

just don't know why. The kids really do survive it and come out completely

healthy. I think I'm the only one still scarred from the experience because 4

years later, I'm still searching for answers. I just want to know why.

Carol Kurtz

Charlotte, NC

Coby - FREE

Diagnosed at UNC Chapel Hill

[Guest guest]

Please let the group know if this treatment abates further cycles.

I am on the fence with regard to giving my 2-year old the Prednisone.

Moreover, I have not been satisfied with the thought of Prednisone,

Cimetidine nor a Tonsillectomy as a treatment. NOTE: I also believe

is a product of the RSV immunization.

Regards.

Joe

________________________________

From: [mailto: ] On Behalf Of

cooljef3@...

Sent: Monday, May 23, 2005 4:21 PM

Cc: michellefowler@...

Subject: Mack

Hello All:

I recently sent an email to the group and didn't get a response. Since

that

time, we administered 1mg/kg of Prednisone to MackenZie. On the 2nd day

of a

cycle that typicall lasted 5 days. Within 2 hours, her fever was gone

and they

did not recurr.

The original message was as follows:

Greetings:

My daughter just turned 2 years old. She has all the symptoms of .

We

have been frustrated with the lack of diagnosis outside of a " virus " .

She gets

the high fevers every month almost to the day and is absolutely perfect

between cycles. We just began keeping clear documentation of the

cycles. They have

been occuring approximately 3-4 weeks apart. She just began a cycle

today

with a 103 fever, but we expect it to get higher as it does

historically reach

105 and above. We have been able to control fevers alternating tylenol

and

motrin. There were 25 days between the onset of the last cycle and

today. It

has been 20 days since her last fever resolved. The fevers usually last

4-5

days.

She has a twin sister that never gets sick. This is certainly a perfect

" control " for diagnosis. (They have never been tested to determine

identical

status, however, they look alike and there was a single placenta)We

have

secured prednizone in order to evaluate its effectiveness and as another

confirmation of diagnosis. Mackenzie has been experiencing these

symptomsfor

approximately 10 months. As a result, she has a lower body weight than

her sister as

once per month she loses her appetite and vomits.

We do not want to see her continually suffer from this disorder. We

took several articles to the doc a few weeks ago, and they agreed that

she certainly fit the profile. Our physician spoke to an ENT doc who

specializes in perdiatrics who also thinks that she fits the profile.

Without even seeing her, he recommended a toncilectomy. He says he has

seen

the syndrome before, and that his experience is that this course of

treatment

is the best.

We are going to see him soon, and are anxiously awaiting Mack's

response to the steroids tonight. She has tested negative

to all of her bloodwork, and had a red throat / toncils last time we

took her during one of her cycles. We have found a few articles about

the success of toncilectomy (referencing 43 cases with a 90 % success

rate), but are interested to hear if there are more documented

cases...or if someone knows of anyone who is paying special attention

to this disorder and course of treatment.

We do not want to administer steroids monthly(doesn't seem good for her

and

worried about increasing frequency of cycles), nor do we want to rush

into surgery unless there is clear evidence to the benefits. On the

other hand, we do not want to see Mack suffer from this " discomfort "

any longer. If tonscillectomy cures or eliminates the symptoms of this

condition in 90%+ of the cases, what are the drawbacks.

I look forward to hearing from anyone who may have information,

referral, or knowledge of additional clinical studies addressing the

effectiveness of tonscillectomy for . Thank you.

Sincerely,

Fowler

561-758-9132

[Guest guest]

Sure. 24 hours after my son received the RSV immunization the symptoms

of began and have continued for 10-months. Though not a doctor, I

have research Respiratory syncytial virus (RSV) and the immunization

because it made my son very " sick " . I can tell you the following:

Respiratory syncytial virus (RSV) is the most important cause of viral

lower respiratory tract illness (LRI) in infants and children worldwide

and causes significant LRI in the elderly and in immunocompromised

patients. The goal of RSV vaccination is to prevent serious

RSV-associated LRI. There have been several obstacles to the development

of successful RSV vaccines, including the need to immunize very young

infants, who may respond inadequately to vaccination; the existence of

two antigenically distinct RSV groups, A and B; and the history of

disease enhancement following administration of a formalin-inactivated

vaccine.

By 2 years of age, almost all children will have been infected with RSV

and approximately 50% will have been infected twice. Reinfection can

occur throughout life and is usually symptomatic; however, RSV infection

does not generally cause LRI in immunocompetent young adults and healthy

older children

Virus-specific immune responses are largely responsible for protection

against RSV-associated LRI and recovery from RSV infection. Immunity to

RSV is mediated via humoral and cellular effectors, including serum

antibody (acquired as a result of infection or maternally derived in

young infants), secretory antibody, and major histocompatibility complex

class I-restricted cytotoxic T lymphocytes Natural immunity to RSV is

incomplete, and reinfection occurs throughout life, as demonstrated by

epidemiologic studies and challenge studies in healthy young adults.

Healthy older children and young adults, however, are usually protected

against RSV-associated LRI. In general, humoral immune responses

involving secretory antibodies and serum antibodies appear to protect

against infection of the upper and lower respiratory tract,

respectively, while cell-mediated responses directed against internal

proteins appear to terminate infection.

Hope this helps. Follow-up with your Pediatrician.

________________________________

From: [mailto: ] On Behalf Of

cooljef3@...

Sent: Monday, May 23, 2005 5:06 PM

Subject: Re: Mack

Joe:

Can you say more about the RSV immunization

[Guest guest]

Hi,

I live in Asheboro NC. Both of my daughters have been diagnosed with .

They have been seen at NC Baptist hospital in Winston-Salem. My oldest was

pretty much cured with a T & A. My youngest is still in the process of being

diagnosed. She has been through a lot of tests. She has to see one more

specialist, a rhemotologists in June.

Holly White

Re: Mack

Joe and ,

My son's fevers started at 15 months directly after the MMR vaccine.

HOWEVER, my son is now almost 7 years old and he was cured with an

adenoidectomy and

tonsillectomy when he was 2. It took one year after the tonsillectomy to

completely get rid of every symptom. The fever was the first to go. Then he

got

stomach aches (which he had never had before) along with the joint pain. It

seems over the course of that year he still had the cycles but there was NO

fever and it seems that he had to endure " every " textbook symptom of in

order to have it finally get over with. Almost a full year after the surgery

he

had his temp to " drop " one day while sitting on the couch. His face turned

blue all around his mouth and his teeth were chattering. I called 911 but as

I

spoke with them his temp leveled back out. He started crying and said

" nappy " . I put him down to sleep and sat beside of him for almost four hours

while

he slept. When he woke up.......we've seen nothing since. Now that is to say

that I still worry every time that he gets a temperature that it is starting

again! I think it is gone......whatever it was. I would give anything to know

why we had to endure it and if I could have changed something in our lives

to have avoided it. I have lived through it and am at the other side with a

perfectly healthy motorcycle riding, t-ball playing, soccer loving boy. I

have

NO idea why he had it. I do know that the T & A cured him. I have NO doubt

about that.

I'm telling you this because I do believe there is a " trigger " that causes

this. However, I think it is different for every one of these children. I

think

it is an environmental trigger. Meaning perhaps there is a dormant gene of

some sort in their bodies that when triggered by an environmental overload

(whether vaccines, fire ants, severe pneumonia, etc) makes that child more

prone

to immune issues. Sounds strange, but if you really read the archives you

will find that a whole bunch of us has an " environmental stimuli " if you will

that triggered our child's fevers. I would love to tell you it was easy as

immunizations, but I've walked this path for too long. Each story is

different,

yet the outcome is the same: .

The very sad part is that I have NO answers. I still have a lot of

unanswered questions. However, I can promise you that it will end at some

point. I

just don't know why. The kids really do survive it and come out completely

healthy. I think I'm the only one still scarred from the experience because 4

years later, I'm still searching for answers. I just want to know why.

Carol Kurtz

Charlotte, NC

Coby - FREE

Diagnosed at UNC Chapel Hill

[Guest guest]

Carol.

I love your response!!

Fran

Re: Mack

Joe and ,

My son's fevers started at 15 months directly after the MMR vaccine.

HOWEVER, my son is now almost 7 years old and he was cured with an

adenoidectomy and

tonsillectomy when he was 2. It took one year after the tonsillectomy to

completely get rid of every symptom. The fever was the first to go. Then

he got

stomach aches (which he had never had before) along with the joint pain.

It

seems over the course of that year he still had the cycles but there was

NO

fever and it seems that he had to endure " every " textbook symptom of

in

order to have it finally get over with. Almost a full year after the

surgery he

had his temp to " drop " one day while sitting on the couch. His face turned

blue all around his mouth and his teeth were chattering. I called 911 but

as I

spoke with them his temp leveled back out. He started crying and said

" nappy " . I put him down to sleep and sat beside of him for almost four

hours while

he slept. When he woke up.......we've seen nothing since. Now that is to

say

that I still worry every time that he gets a temperature that it is

starting

again! I think it is gone......whatever it was. I would give anything to

know

why we had to endure it and if I could have changed something in our

lives

to have avoided it. I have lived through it and am at the other side with

a

perfectly healthy motorcycle riding, t-ball playing, soccer loving boy. I

have

NO idea why he had it. I do know that the T & A cured him. I have NO doubt

about that.

I'm telling you this because I do believe there is a " trigger " that causes

this. However, I think it is different for every one of these children. I

think

it is an environmental trigger. Meaning perhaps there is a dormant gene of

some sort in their bodies that when triggered by an environmental

overload

(whether vaccines, fire ants, severe pneumonia, etc) makes that child

more prone

to immune issues. Sounds strange, but if you really read the archives you

will find that a whole bunch of us has an " environmental stimuli " if you

will

that triggered our child's fevers. I would love to tell you it was easy

as

immunizations, but I've walked this path for too long. Each story is

different,

yet the outcome is the same: .

The very sad part is that I have NO answers. I still have a lot of

unanswered questions. However, I can promise you that it will end at some

point. I

just don't know why. The kids really do survive it and come out completely

healthy. I think I'm the only one still scarred from the experience

because 4

years later, I'm still searching for answers. I just want to know why.

Carol Kurtz

Charlotte, NC

Coby - FREE

Diagnosed at UNC Chapel Hill