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hi .. I wasn't diagnosed with anything at that age. By reading

everyone's posts and history's looking back at my history everything makes a lot

more

sense to me now.. I have always had the rash, and fevers off and on. When I

was 18 I had to have my appendix taken out, due to high WBC and abdominal pain,

which when they took it out it was rather healthy.. lol..least I don't have

to worry about that now.. lol.. Then in 2000 same problems, I also have

endometriosis, and have had 4 laperoscopies for that. They ended up taking out

my

right ovary due to pain, where I couldn't stand up, well needless to say that

when they went in there, it wasn't the endometriosis, but I had told them to

take it anyways so they did.. I still get the right side abdominal pain, now I

just kinda live with it as I have nothing left on the right side. Looking back,

I had small flares with joint pain in my legs, but nothing like this latest

flare.. My CBC has never been as bad as it has been in the last 3yrs and now it

just won't go away.. So I am getting used to everything, just glad to have a

diagnosis now.. I have been to 25 different drs in the last 2 1/2 yrs and been

diagnosed with everything.. lol. RockyMtn spotted Tick, Lyme Disease, Cat

Scratch Fever, Parvo.. lol. Even had two bone marrow biopsies as they thought at

one point I had cancer.. thankfully I don't have that one.. Never want to go

through that again though.. This is a strange disease and has so many different

factors to it.. Now it just messes with my joints and lungs.. Take care and

I hope you are pain free, or somewhat.. Love and Hugs

Kelley in Colorado

Kelleyak31@...

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We have been through a lot of the same stuff.....sort of. At 24, I had

abdominal pain. Docs found nothing wrong....until an old country doc realized I

needed an appendectomy. It had been burst for quite a while and had a cyst

around

it. I had peritonitis.

I have had laparoscopies. The doc *saw* endometriosis and broke up adhesions

for half an hour. The lab report from biopsies showed no endometriosis.

I was in the ER last week for left sided pelvic pain. They can't figure it

out. It's hurting like crazy as I type.

I had a test for Lyme disease. It was negative. The doc decided I had it

anyway and put me on high dose antibiotics for months. All it did was make me

sicker.

I have severe anemia. My RBC's are too small and a bunch of other

abnormalities. I had a bone marrow biopsy. The doc said I have extremely thick,

heavy

bones. No wonder I weigh so much ;-) There was NO iron in my marrow. They keep

thinking I have leukemia. I get tested regularly. I had 5 blood transfusions

last year. I am deathly allergic to supplemental iron.

My guts and lungs have always been my weakest points. My joints range from

swollen to red, crunchy, bumpy, hot, stuck....and sometimes sort of OK.

Sometimes I feel like I would offer all the gold in the world just to have a

nice, neat *understandable* disease!! ;-)

(wsm311@...)

Peace and Carrots Farm

Vermont

http://www.homestead.com/peaceandcarrots/

http://www.sHikingHiatus.com/

> hi .. I wasn't diagnosed with anything at that age. By reading

> everyone's posts and history's looking back at my history everything makes a

> lot more

> sense to me now.. I have always had the rash, and fevers off and on. When I

>

> was 18 I had to have my appendix taken out, due to high WBC and abdominal

> pain,

> which when they took it out it was rather healthy.. lol..least I don't have

> to worry about that now.. lol.. Then in 2000 same problems, I also have

> endometriosis, and have had 4 laperoscopies for that. They ended up taking

> out my

> right ovary due to pain, where I couldn't stand up, well needless to say

> that

> when they went in there, it wasn't the endometriosis, but I had told them to

>

> take it anyways so they did.. I still get the right side abdominal pain, now

> I

> just kinda live with it as I have nothing left on the right side. Looking

> back,

> I had small flares with joint pain in my legs, but nothing like this latest

> flare.. My CBC has never been as bad as it has been in the last 3yrs and now

> it

> just won't go away.. So I am getting used to everything, just glad to have a

>

> diagnosis now.. I have been to 25 different drs in the last 2 1/2 yrs and

> been

> diagnosed with everything.. lol. RockyMtn spotted Tick, Lyme Disease, Cat

> Scratch Fever, Parvo.. lol. Even had two bone marrow biopsies as they

> thought at

> one point I had cancer.. thankfully I don't have that one.. Never want to go

>

> through that again though.. This is a strange disease and has so many

> different

> factors to it.. Now it just messes with my joints and lungs.. Take care and

>

> I hope you are pain free, or somewhat.. Love and Hugs

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Guest guest

Just to maybe turn this around a little on you lol.Ive been healthy all my life

except up till time Dragon got hold me acually be bout 10 months ago.Think alot

of us were also in the group were hit the same way HARD & FAST,i was acually out

golfing paid for 18 only made 9 and i could hardly walk Needless to say i was

confused.Soo even all of our onsets are different doesnt anything with this

disease act normal. d.Canada PS i did hav few symtoms weeks before nasty

chest pain right in middle doctord found nothin also right knee locked up

occationally.

Re: age of onset

We have been through a lot of the same stuff.....sort of. At 24, I had

abdominal pain. Docs found nothing wrong....until an old country doc realized

I

needed an appendectomy. It had been burst for quite a while and had a cyst

around

it. I had peritonitis.

I have had laparoscopies. The doc *saw* endometriosis and broke up adhesions

for half an hour. The lab report from biopsies showed no endometriosis.

I was in the ER last week for left sided pelvic pain. They can't figure it

out. It's hurting like crazy as I type.

I had a test for Lyme disease. It was negative. The doc decided I had it

anyway and put me on high dose antibiotics for months. All it did was make me

sicker.

I have severe anemia. My RBC's are too small and a bunch of other

abnormalities. I had a bone marrow biopsy. The doc said I have extremely

thick, heavy

bones. No wonder I weigh so much ;-) There was NO iron in my marrow. They keep

thinking I have leukemia. I get tested regularly. I had 5 blood transfusions

last year. I am deathly allergic to supplemental iron.

My guts and lungs have always been my weakest points. My joints range from

swollen to red, crunchy, bumpy, hot, stuck....and sometimes sort of OK.

Sometimes I feel like I would offer all the gold in the world just to have a

nice, neat *understandable* disease!! ;-)

(wsm311@...)

Peace and Carrots Farm

Vermont

http://www.homestead.com/peaceandcarrots/

http://www.sHikingHiatus.com/

> hi .. I wasn't diagnosed with anything at that age. By reading

> everyone's posts and history's looking back at my history everything makes a

> lot more

> sense to me now.. I have always had the rash, and fevers off and on. When I

>

> was 18 I had to have my appendix taken out, due to high WBC and abdominal

> pain,

> which when they took it out it was rather healthy.. lol..least I don't have

> to worry about that now.. lol.. Then in 2000 same problems, I also have

> endometriosis, and have had 4 laperoscopies for that. They ended up taking

> out my

> right ovary due to pain, where I couldn't stand up, well needless to say

> that

> when they went in there, it wasn't the endometriosis, but I had told them to

>

> take it anyways so they did.. I still get the right side abdominal pain, now

> I

> just kinda live with it as I have nothing left on the right side. Looking

> back,

> I had small flares with joint pain in my legs, but nothing like this latest

> flare.. My CBC has never been as bad as it has been in the last 3yrs and now

> it

> just won't go away.. So I am getting used to everything, just glad to have a

>

> diagnosis now.. I have been to 25 different drs in the last 2 1/2 yrs and

> been

> diagnosed with everything.. lol. RockyMtn spotted Tick, Lyme Disease, Cat

> Scratch Fever, Parvo.. lol. Even had two bone marrow biopsies as they

> thought at

> one point I had cancer.. thankfully I don't have that one.. Never want to go

>

> through that again though.. This is a strange disease and has so many

> different

> factors to it.. Now it just messes with my joints and lungs.. Take care and

>

> I hope you are pain free, or somewhat.. Love and Hugs

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Guest guest

Just to maybe turn this around a little on you lol.Ive been healthy all my life

except up till time Dragon got hold me acually be bout 10 months ago.Think alot

of us were also in the group were hit the same way HARD & FAST,i was acually out

golfing paid for 18 only made 9 and i could hardly walk Needless to say i was

confused.Soo even all of our onsets are different doesnt anything with this

disease act normal. d.Canada PS i did hav few symtoms weeks before nasty

chest pain right in middle doctord found nothin also right knee locked up

occationally.

Re: age of onset

We have been through a lot of the same stuff.....sort of. At 24, I had

abdominal pain. Docs found nothing wrong....until an old country doc realized

I

needed an appendectomy. It had been burst for quite a while and had a cyst

around

it. I had peritonitis.

I have had laparoscopies. The doc *saw* endometriosis and broke up adhesions

for half an hour. The lab report from biopsies showed no endometriosis.

I was in the ER last week for left sided pelvic pain. They can't figure it

out. It's hurting like crazy as I type.

I had a test for Lyme disease. It was negative. The doc decided I had it

anyway and put me on high dose antibiotics for months. All it did was make me

sicker.

I have severe anemia. My RBC's are too small and a bunch of other

abnormalities. I had a bone marrow biopsy. The doc said I have extremely

thick, heavy

bones. No wonder I weigh so much ;-) There was NO iron in my marrow. They keep

thinking I have leukemia. I get tested regularly. I had 5 blood transfusions

last year. I am deathly allergic to supplemental iron.

My guts and lungs have always been my weakest points. My joints range from

swollen to red, crunchy, bumpy, hot, stuck....and sometimes sort of OK.

Sometimes I feel like I would offer all the gold in the world just to have a

nice, neat *understandable* disease!! ;-)

(wsm311@...)

Peace and Carrots Farm

Vermont

http://www.homestead.com/peaceandcarrots/

http://www.sHikingHiatus.com/

> hi .. I wasn't diagnosed with anything at that age. By reading

> everyone's posts and history's looking back at my history everything makes a

> lot more

> sense to me now.. I have always had the rash, and fevers off and on. When I

>

> was 18 I had to have my appendix taken out, due to high WBC and abdominal

> pain,

> which when they took it out it was rather healthy.. lol..least I don't have

> to worry about that now.. lol.. Then in 2000 same problems, I also have

> endometriosis, and have had 4 laperoscopies for that. They ended up taking

> out my

> right ovary due to pain, where I couldn't stand up, well needless to say

> that

> when they went in there, it wasn't the endometriosis, but I had told them to

>

> take it anyways so they did.. I still get the right side abdominal pain, now

> I

> just kinda live with it as I have nothing left on the right side. Looking

> back,

> I had small flares with joint pain in my legs, but nothing like this latest

> flare.. My CBC has never been as bad as it has been in the last 3yrs and now

> it

> just won't go away.. So I am getting used to everything, just glad to have a

>

> diagnosis now.. I have been to 25 different drs in the last 2 1/2 yrs and

> been

> diagnosed with everything.. lol. RockyMtn spotted Tick, Lyme Disease, Cat

> Scratch Fever, Parvo.. lol. Even had two bone marrow biopsies as they

> thought at

> one point I had cancer.. thankfully I don't have that one.. Never want to go

>

> through that again though.. This is a strange disease and has so many

> different

> factors to it.. Now it just messes with my joints and lungs.. Take care and

>

> I hope you are pain free, or somewhat.. Love and Hugs

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  • 4 years later...
Guest guest

My son has been having fevers for a year now he is nearly 10 years old.

It appears that most kids with are younger when it starts. Ash's

fevers all began with 2 nasty bouts of tonsillitis and has now become a

life changing illness with loss of weight and missing so much school.

We have begun tagamet but it is too soon to tell if its working.

I would like to know if others have been diagnosed with as late

as my son.

Jeanette

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  • 2 weeks later...
Guest guest

Not sure if you would consider this " older " , but my son , Nicky, started

having symptoms at age 6 & 1/2 and the summer after he turned 7 we had a

diagnosis.

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Guest guest

Not sure if you would consider this " older " , but my son , Nicky, started

having symptoms at age 6 & 1/2 and the summer after he turned 7 we had a

diagnosis.

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