50 years dealing with

[Guest guest]

I suffered with this in the 1960s when I had fever attacks every few

weeks. Then age 7 I had my tonsils removed. The frequency slowed to

once or twice a year.

Then when I started going to work age 17 in the late70s/early 80s,

the fevers increased to every 7 weeks.

I attended hospitals for 7 years. The doctors had never seen anything

like this before. I was an 'In Patient' in hosptial 3 times for a

week each time for extensive investigation. I used to see a professor

who was always surrounded with his students.

I had Muscle cut out of my shoulder for biopsy. I had bone marrow

and liver biopsies. I had allergy tests. I had things stuck up my

nose, down my throat and other places! I had barium meal xray. Loads

of blood tests. etc. I had a weird test where they injected something

into my forearm, then cut it out 6 weeks later. All proved nothing.

The doctors told me they just didnt know what was wrong with me!

Then I was given the general antibiotic, oxytetracyline to take for 6

months as a cure for skin acne. It did nothing for my skin, but to my

astonishment, I didnt have a fever attack during that time!!

The skin doctor changed my antibiotic to erythromycin. It cleared my

skin up lovely. But I started getting fevers again. So I changed back

to oxytetracycline. Once again the fevers stopped.

Months went on. Still no fever. I couldnt believe it! I stopped going

to hospital and just kept getting repeat prescriptions from my local

general practice doctor.

This went on for a couple of years. Then my doctor told me I couldnt

have anymore prescritions because I would get immune to the

antibiotics. 5 weeks later, a fever attack! Then 5 weeks after

that.... Then another.

I went back to the hospital 'specialists'. They told me they didnt

know why oxytetracycline worked, but as it did, there was no reason

not to take it for the rest of my life!

So now I have been taking 250mg every day for 25 years, and I am

fever free.

Then I had my daughter. 9 months old. A fever! I knew exactlty what

it was straight away. But the doctors just tell you 'all kids get

fevers'

A couple of years went by. Regular fever episodes. Doctors still took

no notice. My son was born. He started having fevers too! I took them

to my general practice. And saw one of the doctors, not the doctor

that issues my prescriptions but a colleague. I thought that as she

had access to my medical records they would do something.

But no! The doctor wasnt interested in looking at my records, she

didnt seem to believe I had taken antibiotics all these years. And

told me If I was her patient, she wouldnt let me!! And said that 'all

young kids get fevers'!!! It was like banging my head against the

wall!

I went away. bought a thermometer and took my kids temperature

morning and evening every day for 4 months. The fever episodes were

recorded. I also managed to get some of my own hosptial notes from 10

years previous. I wrote a letter explaing everything and setting out

what I wanted. Then I took it, and handed it all to my own personal

doctor. At least he should do something as hes been writing me

prescriptions for recurring fever all these years right?!!

Finally we were sent to the pediatric doctor at our local hospital.

She had the letter, my records, the temperature charts. I explained

everything to her. She should at least realise we had something

unusual right??!

She took their blood. Told me there was nothing showing up wrong. Was

I happy now??? WHAT??!! more head banging!!

She said she had never seen anything like this before. And referred

us to the 'world famous' Great Ormond Street childrens hospital in

London.

Finally in 1995, Dr Nigel Klein. Paid attention. He recognised we had

something wrong. He initially told us that we seemed to be the only

people in the whole world with this condition.

We attended his clinic for 10 years. During that time. He told us

that we did have cells different to other people. Lots of technical

jargon. 300% more than average of this cell, 300% more of that cell

etc. he told us that he now had around 40 patients with recurring

fever problems. Then the paper was published. Finally we had a

recognised condition and it had a name!!!!

He must have been doing his reasearch. FMF was discussed, and other

conditions. Everytime something new came up we were tested for it.

but still no cure. He did once sate that he as goinmg to find the

gene that caused this and cure it! A very bold statement indeed.

His main hope seemed to be they would one day 'grow out of it'. He

knew that wasnt the case for me, and didnt really look into why

oxytetracycline works for me. Just told us that children cant take it

untill they are fully grown.

We tried various medications. Nothing worked. Except prednisolone,

which stopped the fevers immediately, but soon noticed it would just

come back 2 weeks later. So stopped that.

The years went by. My daughter always had more frequent and more

severe fever episodes than my son. I definitely noticed sometimes

they could go up to 6 months fever free during the summer months. But

they would come back autumn/winter months. Any stress or excitement

could bring on an attack. Christmas, birthdays, vacations, first day

of school etc. It was decided not to have T & A because it hadnt

totally worked for me.

Dr Klein started having 'fever clinics' in which about 10 other

doctors from around the county, all interested in fever would attend.

We would go along with my charts and my diary and just go through

what had happened to us since the last time we were there. Still no

cure though.

At age 15 my daughter started taking oxytetracycline. I thought that

this was going to be it. The cure! but to my surprise, it didnt seem

to work. The episodes seemed to be less frequent and less severe, but

didnt stop completely.

However my sons episodes slowed right down, and stopped. Hes now 18

and hasnt had a fever for about 5 years. He does indeed seem to

have 'grown out of it'!

After 10 years of Great Ormond street hospital. My daughter then 17,

getting too old for a childrens hospital. fevers less severe, less

regular, more manageable. Son grown out of it. No cure. There was not

much else to do. We were discharged from hospital.

My daughter now 20, tried stopping oxytetracycline. Nothing got

worse. The fevers still 'manageable'. However over the last year her

fever attacks have got worse. She now taken oxytetracyline again for

6 months. But its definitely not working. Shes had 3 attacks in 3

months. This is as bad as ever.

We are going to try T & A now. As were not under any hosptial at the

moment, we might have to go through the endless referral to different

doctor process, and explaining to each one, once again, before we can

get to the T & A.

Long term. Myself and my children are all intelligent and healthy and

developed normally. these frequent fevers, and 25 years taking

antibiotics have had no lasting damage. In fact at nearly 50 years

old, most people think Im 10 years younger. Sick time off work is

going to be a problem for my daughter.

My best wishes for everyone.

Lee 50

father to 20

and Darren 18

England