mother of 33 yr old son with for 20 yrs

[Guest guest]

Thank you Inga. I need to explain that to . His wife went

with him. ( this is a good thing ) and I am getting info second hand.

Thanks to this web site , I am learning more. I can't believe I have

someone to share with. WOW , this is great!

[Guest guest]

I am a 49 year old with . I take the antibiotic OXYTETRACYCLINE

250mg every day and have done for over 25 years. I stops me getting

fever attacks!

Children cant take oxytetracycline until they are fully grown as it

affects growing teeth and bones.

Both my children have . My son now 18 seems to have grown out of

it and hasn't had an attack for 5 years.

My daughter now 20 still suffers with recurring fever attacks. She

started taking oxytetracycline aged 15. She took it for 18 months. It

slowed down her attacks but didnt stop them completely. So she

stopped taking it.

However over the past winter she had several attacks in quick

sucession and got into trouble at work for taking too much sick time.

She has since restarted oxytetracycline treatment, and so far hasnt

had an attack for 4 months.

I hope this helps.

below is my previous post. Hope this helps....

I am a 48 year old man in England. I have suffered with periodic

fever all my life.

When I was an infant I used to get the fevers, lasting around 5 days,

every 6 weeks or so. 104 temperatures. Swollen neck glands, sore

throat, vomiting. But no rash and no joint pains.

This was in the 60s. My tonsils were removed when I was 7, and that

did slow the frequency down to once or twice a year. Up until I

started going to work age 17. The fevers then increased in frequency

to every 7 weeks like clockwork.

I then started seeing doctors, this was late 70s early 80s, and

stayed in hospital 3 times during attacks for extensive tests. No

doctor had any idea what caused it. The fevers continued like this

for about 5 years. Then around 1982, I was given 6 months supply of

the general antibiotic oxytetracycline, prescribed originally for

acne.

To my amazement I wasnt Ill during that time. Once i stopped taking

it, the fevers returned. The doctors told me that as it stopped the

fevers, there was no reason I couldnt take them for the rest of my

life. So to this day I do. For 25 years I have been virtually fever

free. Ive tried stopping the tablets on a couple of occasions and the

fever returns.

I did have a fever at the beginning of this year, while ive been

taking the tablets. However I do think this was a virus this time

which everyone seemed to be getting. My symptoms though were the

typical fever. Every bout of Illness Ive ever had has been a fever,

Ive never had anything else. I havent developed arthritis (yet), or

diabetes or chronic fatigue. I am very fit, work out at the gym with

weights 3 times a weeks, which I have done for 25 years. And Im out

salsa dancing at least 4 nights a week.

I have a daughter, now 19, and a son Darren 17. Both of them

have periodic fever, with exactly the same symptoms as me. We

attended the 'world famous' Great Ormond street childrens hospital in

England

for 10 years. Originally the doctors knew nothing about our recurring

fevers up until around 1998 when we were told we had .

Our doctor assured me that my children would grow out of it,

something I found hard to believe as this wasn't my own experience.

In the meantime we tried prednisolone and had the same experience as

everyone else on here, It stopped the fever immediately but reocurred

2 weeks later. So I stopped the prednisolone. Although their tonsils

seemed to be infected with white 'cotton wool' like growths during an

attack, it was decided not to remove their tonsils as it didnt stop

my own fevers.

The frequency of the fever attacks did slow down as my children got

older, sometimes going 4 months between attacks. Darren now seems to

have grown out of it, and hasnt had a fever attack for about 4 years.

, who has it more frequently and more severe than Darren, took

oxytetracyline for around 18 months, starting age 15. The fevers

became less severe but didnt stop completely. So she stopped

oxytetracycline. She now goes for up to year fever free and when she

does get an attack, it is fairly mild, she can take general

painkillers throughout the day and can still manage to go to work.

So from our experience the long term outlook is good and none of us

have developed anything more sinister. In fact we were told that due

to the unusually large amount of 'killer cells' we had in our bodies,

we wouldnt die if we had meningitis and we shouldnt get cancer!

I hope this helps

best regards

Lee Wells 48

father to 19 and Darren17

Southend on Sea, England.

>

> Hello. My name is , and I am desperate to know if there are

any

> other adults with this syndrome. It has been a long 20 yrs. Case

> history. had many EENT infections as an infant. Finally

at

> age 7 , he enjoyed a healthy life. At age 13, we moved from PA to

FL

> and after 3 months got mono and started with the symptoms. Three

> years went by trying to diagnose.. A doctor found an article from

> Vanderbilt Hospital with .. I wrote to Dr. ( I

think

> that was her name) I was told that was too old . Five more

> years went by, missed half of 10th grade 11th grade and

almost

> all of 12th grade. We moved to St. sburg and went one night

to

> the ER at All Childrens Hospital where Dr. Good diagnosed

matter

> of factly. It had a name. Dr. Good had now passed on and

had

> a short break from symptoms. After several years they started

again

> but not as often. Trying to get a family doctor or anyone that

knows

> about PFAPF is rediculous. PS.........Keep a record of every visit

and

> test taken) All Childrens is now going to see him again even at

his

> age. Are there any adults out there with this. By the way,

predisone

> has lasting effects. It is better than 106 fever but it shows up

> later. thank you

>

[Guest guest]

I am a 49 year old with . I take the antibiotic OXYTETRACYCLINE

250mg every day and have done for over 25 years. I stops me getting

fever attacks!

Children cant take oxytetracycline until they are fully grown as it

affects growing teeth and bones.

Both my children have . My son now 18 seems to have grown out of

it and hasn't had an attack for 5 years.

My daughter now 20 still suffers with recurring fever attacks. She

started taking oxytetracycline aged 15. She took it for 18 months. It

slowed down her attacks but didnt stop them completely. So she

stopped taking it.

However over the past winter she had several attacks in quick

sucession and got into trouble at work for taking too much sick time.

She has since restarted oxytetracycline treatment, and so far hasnt

had an attack for 4 months.

I hope this helps.

below is my previous post. Hope this helps....

I am a 48 year old man in England. I have suffered with periodic

fever all my life.

When I was an infant I used to get the fevers, lasting around 5 days,

every 6 weeks or so. 104 temperatures. Swollen neck glands, sore

throat, vomiting. But no rash and no joint pains.

This was in the 60s. My tonsils were removed when I was 7, and that

did slow the frequency down to once or twice a year. Up until I

started going to work age 17. The fevers then increased in frequency

to every 7 weeks like clockwork.

I then started seeing doctors, this was late 70s early 80s, and

stayed in hospital 3 times during attacks for extensive tests. No

doctor had any idea what caused it. The fevers continued like this

for about 5 years. Then around 1982, I was given 6 months supply of

the general antibiotic oxytetracycline, prescribed originally for

acne.

To my amazement I wasnt Ill during that time. Once i stopped taking

it, the fevers returned. The doctors told me that as it stopped the

fevers, there was no reason I couldnt take them for the rest of my

life. So to this day I do. For 25 years I have been virtually fever

free. Ive tried stopping the tablets on a couple of occasions and the

fever returns.

I did have a fever at the beginning of this year, while ive been

taking the tablets. However I do think this was a virus this time

which everyone seemed to be getting. My symptoms though were the

typical fever. Every bout of Illness Ive ever had has been a fever,

Ive never had anything else. I havent developed arthritis (yet), or

diabetes or chronic fatigue. I am very fit, work out at the gym with

weights 3 times a weeks, which I have done for 25 years. And Im out

salsa dancing at least 4 nights a week.

I have a daughter, now 19, and a son Darren 17. Both of them

have periodic fever, with exactly the same symptoms as me. We

attended the 'world famous' Great Ormond street childrens hospital in

England

for 10 years. Originally the doctors knew nothing about our recurring

fevers up until around 1998 when we were told we had .

Our doctor assured me that my children would grow out of it,

something I found hard to believe as this wasn't my own experience.

In the meantime we tried prednisolone and had the same experience as

everyone else on here, It stopped the fever immediately but reocurred

2 weeks later. So I stopped the prednisolone. Although their tonsils

seemed to be infected with white 'cotton wool' like growths during an

attack, it was decided not to remove their tonsils as it didnt stop

my own fevers.

The frequency of the fever attacks did slow down as my children got

older, sometimes going 4 months between attacks. Darren now seems to

have grown out of it, and hasnt had a fever attack for about 4 years.

, who has it more frequently and more severe than Darren, took

oxytetracyline for around 18 months, starting age 15. The fevers

became less severe but didnt stop completely. So she stopped

oxytetracycline. She now goes for up to year fever free and when she

does get an attack, it is fairly mild, she can take general

painkillers throughout the day and can still manage to go to work.

So from our experience the long term outlook is good and none of us

have developed anything more sinister. In fact we were told that due

to the unusually large amount of 'killer cells' we had in our bodies,

we wouldnt die if we had meningitis and we shouldnt get cancer!

I hope this helps

best regards

Lee Wells 48

father to 19 and Darren17

Southend on Sea, England.

>

> Hello. My name is , and I am desperate to know if there are

any

> other adults with this syndrome. It has been a long 20 yrs. Case

> history. had many EENT infections as an infant. Finally

at

> age 7 , he enjoyed a healthy life. At age 13, we moved from PA to

FL

> and after 3 months got mono and started with the symptoms. Three

> years went by trying to diagnose.. A doctor found an article from

> Vanderbilt Hospital with .. I wrote to Dr. ( I

think

> that was her name) I was told that was too old . Five more

> years went by, missed half of 10th grade 11th grade and

almost

> all of 12th grade. We moved to St. sburg and went one night

to

> the ER at All Childrens Hospital where Dr. Good diagnosed

matter

> of factly. It had a name. Dr. Good had now passed on and

had

> a short break from symptoms. After several years they started

again

> but not as often. Trying to get a family doctor or anyone that

knows

> about PFAPF is rediculous. PS.........Keep a record of every visit

and

> test taken) All Childrens is now going to see him again even at

his

> age. Are there any adults out there with this. By the way,

predisone

> has lasting effects. It is better than 106 fever but it shows up

> later. thank you

>

[Guest guest]

Thank you , I will ask about the oxytetracycline!!!!!

[Guest guest]

Thank you , I will ask about the oxytetracycline!!!!!