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» LymeNet Flash » Questions and Discussion » Medical Questions » Venus Williams - Sjogren's diagnosis, or is it Lyme?

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Author Topic: Venus Williams - Sjogren's diagnosis, or is it Lyme?
hopeful4
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Heres another diagnosis that sounds suspiciously like Lyme Disease. Venus Williams has been diagnosed with Sjogrens Syndrome, an autoimmune disease, and is experiencing extreme fatigue and joint pain.

Venus out of U.S. Open with autoimmune disease

Published August 31, 2011
By Julian Linden

NEW YORK (Reuters) - Former U.S. Open champion Venus Williams withdrew from the last grand slam of the year on Wednesday, revealing she is suffering from an autoimmune disease.

The former world number one quit the tournament before her second-round match against Germany's Sabine Lisicki then released a statement explaining the extent of her health problems.
"I'm really disappointed to have to withdraw from this year's U.S. Open," she said in the statement.


"I have recently been diagnosed with Sjogren's Syndrome, an autoimmune disease which is an ongoing medical condition that affects my energy level and causes fatigue and joint pain."
Williams has been battling health problems for the past year. She retired from her third-round match at the Australian Open with a hip problem and did not play again until June.


The 31-year-old played only a handful of matches since making her comeback and had not played since Wimbledon, pulling out of recent tournaments in Toronto and Cincinnati. She only resumed practising last week because of what she said was an "energy-sucking" mystery illness
She told reporters she had been diagnosed with an illness but did not say what it was until Wednesday.


"I enjoyed playing my first match here and wish I could continue but right now I am unable to," said Williams. "I am thankful I finally have a diagnosis and am now focused on getting better and returning to the court soon."


Williams is one of the most accomplished players of her generation, winning Wimbledon five times and the U.S. Open twice and playing in the final at the Australian and French Opens.


Speculation about her future has intensified over the past few months but earlier this week she confirmed she had no intention of retiring.
"I think she's a tough girl," Lisicki said. "I think she'll come back."


Nine out of 10 patients are women and most experience extreme fatigue and joint pain.


http://www.foxnews.com/sports/2011/08/31/venus-out-us-open-with-autoimmune-disease/

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lymeladyinNY
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Hmm, I guess we'd need more info. I certainly hope she'll be ok, whatever the cause of her illness.

--------------------
I want to be free

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erikjh1972
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dont jump to conclusions. look up the disease and see what you think.

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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seekhelp
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Of course it's Lyme! Everything is here. lol.
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glm1111
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She is on Good Morning America now and some of the symptoms she describes are:

Air Hunger

Joint Pain,

Fatigue

Dry Mouth, Dry Eyes.

VERY suspicious for Lyme. Sjogrens is just a name for this disease, and of course they don't know the cause.

If the medical community was awake, they would at least test for Lyme disease that is known to mimic many diseases. Instead, they say the body is attacking itself, which I always found to be ridiculous.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Lymetoo
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I would say she could have both. I have Sjogren's and I blame the Lyme for it.
(or should I blame babesia for it?)

Sounds like she could have babesia too.

--------------------
--Lymetutu--
Opinions, not medical advice!

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hopeful4
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Here is a link to her ABC News interview:

http://tinyurl.com/3kjq564

I do, of course, wish Venus the best of health and well-being.

I hope that she can, at least, get information about the possibility that her illness may be Lyme and Cos related, and find an LLMD who can help. (Maybe even view Under Our Skin.)

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tick battler
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Yes, I would bet lyme is involved. I agree with what Gael said.

tickbattler

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Lymeorsomething
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Yeah, for sure. Let's hope the hammerhead docs she's seeing have at least run some tests for lyme.

--------------------
"Whatever can go wrong will go wrong."

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Haley
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That was one of the many things I was diagnosed with before finding out I had Lyme.
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Cockapoo1996
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In hopeful4's link it says

While a combination of genetic and environmental factors can lead to Sjogren's, the condition is often triggered by an infection.

I hope Venus knows that the infection could still be active and could be a tick born one.

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phyl6648
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Doesn't Lyme cause autoimmune diseases? I have Sjogren's and think it is lyme related. Was dx with sjogren's yrs before finally getting a lyme dx.
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ladyjenie
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I have Sjogren's, too. I am experiencing extremely dry eyes and dry mouth.

My rheumy scripted Exovac and it does help with mouth dryness. Don't take it at night, you'll drool all night long. I've used the Biotene products but haven't noticed much improvement in symptoms.

Using regular toothpaste caused burning and blistering in my mouth. I changed to sea salt/baking soda and I don't have problems there anymore and my mouth feels really clean.

I am on CPAP and I wake up every morning with my tongue stuck to the roof of my mouth even though my unit is new and has the heated water reservoir. I wish I knew how to avoid this, not a good feeling and can't be good for my teeth.

I've had the Sjogren's over 10 years and have flares 2-3 times a month. I've always thought it was the Lyme because of the back-of-the-neck headaches but don't know which it is because the symptoms overlap.

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Rumigirl
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I have it, too. I was diagnosed with it at least 15 years before Lyme (had the symptoms of Sjogren's, etc. for many decades), but I've clearly had Lyme & co all or most of my life. I know it's from the Lyme and co's.

My teeth have fallen apart recently from it, too, costing me thousands of dollars and a lot of pain to fix. It was suggested that I get all my teeth crowned to avoid continued damage. And my diet and daily hygiene are impeccable!

I doubt any of Venus's drs will consider infections. The Rheumy that dx'd me with it, plus RA and Raynaud's, when I came back with a CDC + WB, she said, "you never had Lyme"!!! What exactly did she think was the cause of all the horrible symptoms that she couldn't help me with?? Crazy. she said "false positive." Crazy making.

My LL neuro told me that IVIG can get rid of the Sjogren's. I'd like to believe that, but after 36 years of it, I'm not holding my breath. After a year of IVIG, although it has helped, my Peripheral Neuropathy is worse by the punch skin biopsy!!

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BleedGreen
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I had joint pain, fatigue, dry eyes/mouth, and all the rest. I would wake up soaked in my sweat with my mouth so dry my tounge felt like I slept with sand in my mouth.

All of that was relieved with a couple of months of abx.

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Lymetoo
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I have Raynaud's too. Thanks, Lyme.

--------------------
--Lymetutu--
Opinions, not medical advice!

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sutherngrl
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All autoimmune illnesses are suspecious to me. I believe that something triggers the body to attack itself. Probably an infection, bacterial or viral.
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Haley
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This is a terrible thought but...... if it turned out to be Lyme, think of all the attention that Lyme would get. I wouldn't wish Lyme on my worst enemy but if it turns out to be that she can help us.
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cleo
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It could be anything, doesn't have to be lyme. Whatever it is bart, myco, cpn, lyme, or babs or some unknown bacteria. It is infection based. It is so sad after all the years of hard work she is too sick to play. I seriously doubt that by doing standard therapy that she will be able to return to playing like she thinks. I hope she looks elsewhere for answers. She certainly has the income to do so.
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mooseboy
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--This is a terrible thought but...... if it turned out to be Lyme, think of all the attention that Lyme would get. I wouldn't wish Lyme on my worst enemy but if it turns out to be that she can help us.--

I wish I could say the same, but if GWB, a multitude of Congressmen & Senators (including Chuck Schumer & Joe Wilson), Ben Stiller, Parker Posey, and many other well-known celebrities, athletes, & politicians have had it, and it hasn't raised awareness, I don't see that Williams having Lyme will push it over the edge.

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erikjh1972
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George Bush had it when he was president. Nothings gonna change.

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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James1979
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quote:
Originally posted by mooseboy:

I wish I could say the same, but if GWB, a multitude of Congressmen & Senators (including Chuck Schumer & Joe Wilson), Ben Stiller, Parker Posey, and many other well-known celebrities, athletes, & politicians have had it, and it hasn't raised awareness, I don't see that Williams having Lyme will push it over the edge.

I think it's highly dependent on the activism of the Lyme victim.

Maybe most people (especially celebrities) don't want to risk "dirtying" their names on account of a controversial illness (and certainly their PR people probably recommend that they keep silent), but even just 1 or 2 active individuals can make a huge difference.

Look at Pam Weintraub - she was "just" a science journalist (not even a celebrity), but was very active and was able to enlighten thousands about Lyme disease. (She is the author of "Cure Unknown").

Same for the director of "Under Our Skin" - also not a big celebrity, but has caused a huge change in the balance of the controversy. And the beneficial effects of that documentary are still adding up today.

I think we just have to get "lucky" and have the right people become active and speak up. Sometimes it only takes a few individuals to make a huge change.

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lpkayak
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Symptoms vary from person to person but may include:

a dry, gritty or burning sensation in the eyes
dry mouth
difficulty talking, chewing or swallowing
a sore or cracked tongue
dry or burning throat
dry or peeling lips
a change in taste or smell
increased dental decay
joint pain
vaginal and skin dryness
digestive problems
dry nose
fatigue


ok i dont have:
sore or cracked tongue
dry or peeling lips

and some of the others are not bad..they come and go

but no doc has ever dx me with it

my worst are extremely dry eyes, dry mouth and joint pain, digestive problems and periferal neuropathy...isnt that one? why isnt it on the list???

is there a test for it or is it just a bunch of sx

i know i dont have what ever it is that makes you have cold hands and feet

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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It's like Lyme. You don't have to have every symptom on the list.

--------------------
--Lymetutu--
Opinions, not medical advice!

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MichaelTampa
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quote:
Originally posted by lpkayak:
is there a test for it or is it just a bunch of sx

According to wiki, they test antibodies for autoimmunity, test ultrasound for dry saliva glands, and test tear production. Like everything named "syndrome", it is a collection of symptoms.
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mom2kids
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How sick were these "celebrities" and GWB? I would think that if they were very sick and not "cured" in the IDSA, 2-4 week period they would become spokespeople for Lyme. So I am thinking they were all better in a short time period and therefore didn't feel the need to take up the cause.

--------------------
Down on her knees, she wept on the floor.
This hopeless life, she wanted no more.
Dead in the mind and cold to the bone,
She opened her eyes and saw she was alone. ~Seether

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erikjh1972
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mom2kids, that or they havent relapsed yet.

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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hammond
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I never new GWB had Lyme! Yes and if they (the celebes with Lyme) do relapse they might be more vocal, not that I wish relapse on anybody.

My thought about Venus is that if you are generally young and healthy, than you almost never end up in situations where you experience directly an incompetent M.D. And so you may drift along in your complete confidence in any American M.D. as long as symptoms are managed. It may take a while to understand that the emperor has no cloths when it comes to chronic disease in the U.S. Trauma and other areas of medicine, sure western medicine is amazing. But chronic diseases, well WE all know there is soooo much room for improvement. But that knowledge is hard won. I hope she gets well.

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ktkdommer
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Crazy as it is, I just emailed Venus at venuswilliams.com. I let her know my story with an autoimmune disease before my Lyme disease diagnosis.

Before Lyme, I never would have done that.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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Razzle
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Vitamin A deficiency can mimic the dry-eye of Sjogrens.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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erikjh1972
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quote:
Originally posted by ktkdommer:
Crazy as it is, I just emailed Venus at venuswilliams.com. I let her know my story with an autoimmune disease before my Lyme disease diagnosis.

Before Lyme, I never would have done that.

i sent her a message on twitter. will it do any good? who knows?

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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galehane
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I was suspected for having sjgrens.
I have bartonella.
Somebody that writes proper english should write to her and recommend a test at Galaxy for bartonella.
Gale

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lpkayak
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thankd michael

there was stuff written about bush

and his mom and dad

some was published and then buried

i remember somehow believing he got really good aggressive llmd tx...and then they said he was cured

i think it showed up at a annual ckup...they didnt tell anyone...they txed him and the next yr they said he WAS pos...got tx and now is fine

there was a lot about how he used to be areall good speaker...then he was awful...then he was some better

if you search some of those alt sites you might find this info

also a common lyme newsletter had him on the cover...

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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Pres. Bush was treated by an LLMD .. or at least the LLMD consulted with Bush's doctor.

--------------------
--Lymetutu--
Opinions, not medical advice!

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erikjh1972
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quote:
Originally posted by galehane:
I was suspected for having sjgrens.
I have bartonella.
Somebody that writes proper english should write to her and recommend a test at Galaxy for bartonella.
Gale

Do you honestly believe she's going to take any advice that doesn't come from her inner circle?? i doubt it, atheletes and people in the lime light(no pun intended) dont tend to take anything that comes from people they dont know too seriously. i cant say that i would blame them either.

--------------------
3 months Doxy
8 months of Tetra
7 months of Biaxin/Plaq.
4 months Doxy/Biaxin/Plaq.
5 months Biaxin/Plaq.
Back on Doxy/Biax/Plaq
On the road to recovery.
Trying to make people Lyme Aware.......

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