Re: Anyone else here have Mononucleosis as a child too?

February 14, 2009

Hi ...

I've had mono twice, at 16 and 31. I don't know what is wrong with my

emails. Grrrr.

Heidi in Mass.

_

In a message dated 2/14/2009 4:23:56 P.M. Eastern Standard Time,

jhoorm01@... writes:

Yes I had mono, chickenpox and rheumatic fever...

Joy

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_danielskathy@danielskathdan_ (mailto:danielskathy@...) _ " <_

(http://www.brainyquote.com/quotes/quotes/b/barackobam409128.html)

_danielskathy@danielskathdan_ (mailto:danielskathy@...) _> wrote:

Just reading some interesting information on Lupus at the Hopkins

site.

KD

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February 14, 2009

Yes I had mono, chickenpox and rheumatic fever...

Joy

" danielskathy@... " <danielskathy@...> wrote:

Just reading some interesting information on Lupus at the Hopkins

site.

KD

------------------------------------

February 14, 2009

Yes I had mono - here we call it glandular fever - it only got picked

up because I was still on regular bloods to check for my Rheumatic

Fever at the time. See my post below for anyone else that might have

had RF also...

> Just reading some interesting information on Lupus at the

Hopkins

> site.

>

> KD

>

February 14, 2009

when i was 6

--- On Sat, 2/14/09, danielskathy@... <danielskathy@...>

wrote:

From: danielskathy@... <danielskathy@...>

Subject: [ ] Anyone else here have Mononucleosis as a child too?

Date: Saturday, February 14, 2009, 12:53 PM

Just reading some interesting information on Lupus at the Hopkins

site.

KD

February 14, 2009

I had mono when I was 13 and boy was that fun, LOL!

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

February 14, 2009

I had chorea (it was also called St. Vitas Dance back then, although there was

no dancing involved, LOL) when I was 10. My youngest also got a very mild case

of it at 12, he also has the markers for auto immune inner ear disease.

in PA

[ ] Anyone else here have Mononucleosis as a child too?

Date: Saturday, February 14, 2009, 12:53 PM

Just reading some interesting information on Lupus at the Hopkins

site.

KD

February 15, 2009

I had Glandular fever in '95, when I was 17. It persisted for longer

than usual & I had my tonsils removed late '96 because they were

croniclly infected. I had to pull out of Uni twice, once fulltime

study & the other externally.

I was born with a congentital heart defect, a minor hole in my heart

that appears to have mended itself (they did a full work up before I

went into surgery & couldn't find it, but they gave my intravenious

anti-biotics after surgery anyway).

I remember having very bad joint pain when i was about 9, i could

barely walk & my friends would help me, one under each arm. It was

put down as " growing pains " & I think most people thought I was

making it up. I can still remember the pain vividly, not unlike RA

pain but a bit sharper. No swelling.

I had all the other childhood stuff too; chicken pox, mumps & german

measles.

Sharon of Oz

>

> From: danielskathy@... <danielskathy@...>

> Subject: [ ] Anyone else here have Mononucleosis as a

child too?

>

> Date: Saturday, February 14, 2009, 12:53 PM

>

> Just reading some interesting information on Lupus at the

Hopkins

> site.

>

> KD

>

February 15, 2009

HI KD,

I had tonsil infections many times as a child and had to have them removed

at age 5. At age 17 I had a very severe case of Mono. I was home for several

months. The doctor had to even come to the house.I never felt quite right

after that. Even today if I get over tired my glands will swell up some. When I

was in my 20's I found out I had mitral valve prolapse after having an echo.

However a year ago my internist my internist had me have an echo and this

time he told me my Mitral Valve Prolapse was actually Mitral Stenosis and asked

me if I ever had Rheumatic fever as a child..........

On Sat, Feb 14, 2009 at 2:53 PM, _danielskathy@danielskathdan_

(mailto:danielskathy@...)

<_danielskathy@danielskathdan_ (mailto:danielskathy@...) > wrote:

> Just reading some interesting information on Lupus at the Hopkins

> site.

>

> KD

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February 15, 2009

KD,

I had a horrible case of mono when I was a senior in high school.

Not an MD

On Sat, Feb 14, 2009 at 2:53 PM, danielskathy@...

<danielskathy@...> wrote:

> Just reading some interesting information on Lupus at the Hopkins

> site.

>

> KD

February 15, 2009

I had mono at age 12. I ended up with Hashimoto's hypothyroidism at age 26.

Then I developed RA, Lupus, and Sjogren's Syndrome at age 30. 8 years

later, I'm wondering about the origin of things. Do you have links to

articles linking mono to autoimmune disease? Incidentally, I just had my

second case of mono this past month. Ugh!

Thanks,

Sherri

February 15, 2009

Hi Sherri,

Heres the article I was reading. I did so much surfing yesterday

since was fevery and fatigued....

Here is the particular paragraph, then I copied the whole article

below it.

What about infection? We all believe infections have something to do

with getting lupus. Our strongest proof is the data on monoEpstein

Barr virus. In children who develop lupus, the association with

Epstein Barr virus is astronomically high. In fact, we're at the point

where we say a child will not get lupus unless the child has been

exposed to Epstein Barr virus. But even in adults, there is still a

strong association between having lupus and having been exposed to

Epstein Barr virus. Should there be a vaccine for Epstein Barr that we

could just use to vaccinate all of our children? We need to be

careful. If an immune response to a virus can precipitate lupus, so

might an immune response against an Epstein Barr virus vaccine.

Lupus Information

by Petri, M.D., M.P.H.

* What are the Symptoms of Lupus?

* Is Lupus an Autoimmune Disease?

* What do we Know About Lupus?

* How is Lupus Managed and Treated?

The following is a transcript of a talk Dr. Petri gave at the British

Columbia Lupus Society Symposium in November, 2002.

What are the Symptoms of Lupus?

First off, lupus is not rare. But we definitely need a spokesperson.

We need someone famous to take on lupus as their cause.

The problem with lupus is, people can't tell how sick you really are.

That's one of the reasons lupus doesn't get the respect it deserves.

When my patients apply for disability, often they are turned down. One

of the major things that happens in lupus is chronic fatigue, and

there is no way to measure that.

Looking at the malar rash in lupus, how does a doctor know it isn't

the worst acne? Because it spares the areas around the nose and under

the nose that are shaded from ultraviolet light.

How do you know if it's lupus or another form of arthritis? Well,

hopefully with diagnostic tests. In addition, the arthritis of lupus

is not deforming. The ligaments and tendons around the joints loosen,

but there is not permanent destruction of the bones.

Memory problems bother patients on a day-to-day basis. This is a huge

problem, and we don't know why. In lupus patients, we are often

overlooking fibromyalgia. Thirty percent of my patients have

fibromyalgia. You are tired, you hurt, and nothing your doctor does

helps. Fibromyalgia is not inflammatory. It is a resetting of the pain

thermostat in the brain. I suspect it has more of an impact on your

day-to-day life than your lupus, if your lupus is not flaring.

Another symptom is hair loss, called alopecia. In the discoid form of

lupus, hair loss will be permanent. I have patients, 15 or 16, who

will have to wear wigs the rest of their lives because their diagnosis

was delayed and they already had permanent hair loss.

Did you know that one out of five women have a positive anti-nuclear

antibody test? Having anti-nuclear antibody is very common, but the

great majority of people will never get sick. This is why the

diagnosis of lupus is not just based on the positive ANA test.

Something else has to happen to prove the person really has lupus,

like the skin rashes, the joint inflammation, the kidney disease, and

the low blood counts.

(top of page)

Is Lupus an Autoimmune Disease?

It turns out there are a lot of people who have an autoimmune disease

that just affects one organ. A common example of this is autoimmune

thyroid disease. I know that one out of every ten lupus patients has

low thyroid. But most people who have thyroid disease have nothing

else happen.

Did you know that doctors have just discovered that some very common

chronic illnesses are autoimmune? Diabetes, for example, especially

the juvenile form, is autoimmune.

Did you know that hardening of the arteries is autoimmune? Cholesterol

lowering drugs called Statins, work not just because they lower

cholesterol, but perhaps because they have an anti-inflammatory

action. They prevent the plaque from rupturing and blocking the

coronary arteries. So, it's fascinating how important autoimmune

disease really is in many kinds of diseases.

Rheumatologists get involved when more than one organ is involvedwhat

we call " systemic " illness. There is a kind of systemic illness called

undifferentiated connective tissue disease. It's obvious to the

physician that the person has an autoimmune problem, but they don't

meet the definition for lupus or scleroderma or rheumatoid arthritis.

For example, it could be a young woman who has a positive ANA and

Raynauds. Or, it could be anyone who has a positive ANA or arthralgia,

but we don't see swelling of the joints.

During the silicone breast implant controversy, it was thought that

silicone might be causing illnesses like lupus and scleroderma. Then

it was discovered that even women who had never had a silicone breast

implant could get these mild forms of autoimmunity. In fact, five out

of 100 women in the United States have these mild forms of systemic

autoimmunity. Autoimmune diseases are not rare. If five percent of

women have an autoimmune disease, that should be considered common. If

we could just understand autoimmunity, it would have such a huge

impact on the health of every country in the world. In the United

States, there are 300,000 people with lupus. Worldwide, there are

three million.

There are famous people with autoimmune disease. Barbara Bush and her

husband, the ex-president Bush, both had autoimmune thyroid

disease. One of their sons had colitis. But the member of their family

that got lupus was their dog, Millie. Dogs can get lupus. Vets can

diagnose it because dogs can get the same malar rash that human beings do.

Now, Millie wrote a book about her life with lupus. It's a great

story, because Millie had a successful pregnancy. So, I think it's a

nice story to tell patients with lupus. Millie has since died of old

age. The current dog in the White House, Spot, is Millie's grandson.

But because Spot is male, he's unlikely to get lupus. We think the

autoimmune story has ended!

(top of page)

What do we Know About Lupus?

There are thousands of researchers worldwide trying to figure out

lupus. The reason it's so complicated is because so many things

contribute to getting lupusgenetics, drugs, infection, ultraviolet

light, and hormones. Then we have the immune system. We don't really

know what's going on in the immune system when people get lupus. There

seem to be abnormalities in every single part of the immune system.

So, what doctors measure is what comes out the other end.

When you develop lupus, you make antibodies against self. Your immune

system goes doubly wrong when you have lupus because not only are you

making antibodies against yourself, but your immune system doesn't

work as well against infection. It's very unfair! But that's what

lupus is all aboutantibodies against self. Now, your doctor measures

those antibodies when making a diagnosis, but we also measure

complementC3, C4 and total complement, because the complement proteins

are used up in the blood when you have immune complexes. So, when your

antibodies against yourself bind to your cell proteins, they form the

" immune complex " , and that complex activates complement. As complement

is used up, the complement levels become low. Then, of course, we

measure inflammation. Inflammation can be present without pain or

other abnormal feeling. This is why ongoing surveillance is so

essential when you have lupus. When I was chosen to serve on a

committee of the American College of Rheumatology to give guidelines

to physicians, we recommended that if you have lupus, you should be

seen about every three months, even if you're feeling well.

Ten percent of lupus patients are male. The composition of lupus

patients changes depending on what area you are in. It is more common

in African-Americans and Asian-Americans in the United States. That

probably represents genetic issues that are not yet understood.

Our average patient in the U.S. is diagnosed in their 20's and 30's. I

suspect in Canada the age of onset might be a little bit later. In

Sweden, for example, the age of onset for lupus is late 30's, early

40's. Now, if we could only understand those genetic influences!

I'm sure you ask yourself, What can I change in my lifestyle that can

make my lupus go away? Studies of diet have not suggested any benefit

at all. Another diet study was done on Omega 3 fatty acids. The study

showed there was no benefit whatsoever.

Role of Estrogen

Don't you wonder why lupus is more common in women than men? Well, it

turns out estrogen is very important in the development of lupus. In

mice, things are so simple, that if you get rid of estrogen or give

male hormone, you can stop lupus. Estrogen can actually activate the

immune system in many different ways.

In the 1980's, it was discovered that women who have lupus are " super

women. " Their estrogen is metabolized using pathways, so the

metabolites are still active. Not only is their estrogen working on

their immune system, but the metabolized estrogen is as well. This was

also true in their healthy, female family members. This may be one of

the genetic predispositions to lupus. The metabolized estrogen still

works on the immune system. Now, Doctor Lahita has suggested it may be

possible to reverse these pathways. One way to potentially reverse

these estrogen pathways is through diet changes. It was suggested that

vegetables like broccoli and cauliflower might affect estrogen

metabolism. This was finally tested in Boston. Half the lupus patients

had the active ingredient in broccoli in pill form, while the other

half took a placebo. It is possible to reverse these estrogen

metabolism pathways. However, it made no difference on the activity of

the lupus. We need further research in this area.

Many postmenopausal women with lupus wonder if they should take

estrogen. Now, we're concerned for two reasons. One, if a woman is

more likely to make clots because she has the antiphospholipid

antibody, we don't want her to take estrogen because it further

increases the risk of having a clot. We've also been concerned that

estrogen in pill form might increase the risk of lupus flare-ups.

A study in the United States, called the " Safety of Estrogen Study, "

is currently underway and should be completed within a year. We will

know if taking estrogen in pill form increases the risk of having a

flare. Our impressionwithout the datais that the answer is probably

no. This has been suggested in several studies, including one from

Toronto. So, the use of HRT is probably not so bad if you don't have

an antiphospholipid antibody.

The Women's Health Initiative study found that taking estrogen in pill

form after menopause might increase heart disease. Since everyone with

lupus is already at greater risk of heart disease, most lupus doctors

are no longer giving hormone replacement therapy.

Genetic Risk

When you were first diagnosed, you may have wondered if your children

would get lupus. The good news is that only two out of 100 children

whose mother has lupus will get lupus. The genetic risk is small. It

is not strictly a genetic disease.

In mice studies, over 100 different genes predispose to lupus. Some

very important research reveals that once you have lupus, several

hundred genes participate when you have a lupus flare up. So you can

understand how daunting the task is, not just to identify the lupus

genes, but to identify the genes that are activated when the lupus

flares up. Those genes that are activated when lupus flares up are the

genes that we have to control to keep lupus quiet. We have a lot of

work ahead of us!

We do know that the same genes that are important in

transplantationthe immune response genesplay a role in getting lupus.

These are called the HLA genes. Did you know that doctors can almost

predict which antibodies against self you will make, based on your

immune response genes? If you were wondering why patient A with lupus

makes antibodies to DNA and patient B makes antibodies to phospholipid

and patient C makes antibodies to Ro, that's probably determined

genetically.

The most important thing discovered about the genetic predisposition

to lupus started out in mice. This is called " programmed cell death, "

or apoptosis. In all of us, billions of our cells die every day. We

are supposed to be able to chew those cells up and dispose of them

without our immune system knowing that anything has happened. We don't

want our immune system recognizing our cells as they die. We want our

immune system to be ignorant. It was discovered in a mouse model of

lupus that one genetic mutation affecting programmed cell death was

enough to cause lupus. It doesn't hold true in humans, though. But we

know that programmed cell death is important in lupus because those

proteins recognized as foreign by the lupus person's immune system are

all exposed during cell death. In some way, programmed cell death is

key in the onset of lupus.

We also know that it's very important when you have lupus to be able

to get rid of those immune complexes. It turns out that some people

genetically are going to be slower in getting rid of immune complexes.

If you inherit one of these reasons to be slow in getting rid of

immune complexes, you are much more likely to get lupus kidney disease.

Eventually, genetic research is going to be so helpful in determining

not only what lies ahead, but what causes the disease. If we could

understand the cause, we would be a lot smarter in developing new

therapies.

Did you know we can prevent lupus in mice? This is one of the most

important research studies ever done. In mice who are genetically

predisposed to lupus, we can prevent lupus from starting by getting

rid of the debris from the cells that have died before the immune

system recognizes that debris as being foreign and starts the lupus

antibody responses. We can do it in mice with a drug already available

for human beings. That drug is called DNase. DNase helps children who

have cystic fibrosis. Now, if we knew which of your children were

genetically predisposed to get lupus, it might make sense to do a

prevention trial with DNase. We are not there yet. Remember, we have

to identify those 100 genes first. But we may already have a way to

prevent lupus in the next generation. It worked in mice.

Enviromental Triggers

Genes aren't everything. Remember, only two percent of children get

lupus if their mom had lupus. We know there are environmental

triggers, the most common being ultraviolet light. Many people don't

get lupus until they've had a bad sunburn. For most of you who have

the lupus rashes, those are brought out by ultraviolet light. If you

wear a hat with a brim and sunscreen, you are much less likely to get

those rashes.

There are other triggers, including drugs. Be very careful about sulfa

antibiotics. Why? Some people don't have lupus until they take these

sulfa antibiotics. For people who are already diagnosed with lupus,

about 25-per cent will have their disease get more active if they take

a sulfa antibiotic. If you need antibiotics, make sure you ask your

doctor to prescribe something other than a sulfa antibiotic.

There's also a problem with so-called " alternative medications. " Why?

Because they are not tested for either safety or efficacy. So, it's

the lack of knowledge that is the problem. Surveys show 90-per cent of

people take alternative medications. You take them because you hope

that by experimenting you're going to find something that helps your

lupus. It is an experiment, and it can go wrong.

Some of my patients, when admitted to hospital for a lupus flare,

advised me that they had taken Echinacea. At first, I didn't think

this could have caused a lupus flare, but after the second or third

case, I said I'm going to do some research. It turns out, it has been

known in Germany for many years that Echinacea can cause flares of

autoimmune disease. If you live in Europe, it says right on the

Echinacea label not to take it if you have autoimmune disease. So,

after hospitalizing some of my patients with terrible kidney flare-ups

who had taken Echinacea on a daily basis, I have now forbidden all my

lupus patients from taking it. Maybe it would be okay for a few days

to prevent a cold, but my patients were taking it everyday to try to

prevent the next cold. Please be careful when taking alternative

medications.

Now, if you smoke, you are more likely to get the worst kind of skin

lupusdiscoid lupus. Also, plaquenil doesn't work very well. So, don't

smoke. It's bad for your lupus. Set a day and quit!

Stressis that good for lupus? Of course not! Stress is not good for

anything! But we know we're under more stress than ever before. Stress

affects the neuroendocrine system that's supposed to keep autoimmunity

quiet. What I ask my patients to do is to take a little vacation from

stress one or two times a week. Go out for dinner, go to a movie, go

shopping for shoeswhatever it is that relieves your stress. Just shut

the door on your everyday life for a few hours a week.

Now, surgery is an example of a physical stress in a lupus patient. I

sometimes get calls from surgeons of my patients saying the surgery

went really well but, after the procedure, my lupus patient developed

a fever. When the fever continued, they thought maybe it was the

lupus. Nearly all of the time this is a lupus flare. So, whether it's

mental or physical stress, it's not good for your lupus.