Ashley Olsen Chronic Lyme Disease Diagnosis (Olsen twins)

[heapsreal]

With the french open tennis coming up, i read and article about the only guy to beat rafa nadal in 10years was robin soderling, but was foreced to retire in 2009 because of mono.

Why is it easy to believe sports stars have ongoing mono but the general public are told by their drs that after a few months u should be right and its probably depression if u still have symptoms.

I think its just not socially exceptable to have yuppy flu, as that what would get mentioned in any type of article if it was written on cfs/me. One of the worst things that has been written about cfs/me is by the tool who wrote yuppy flu.

 

[duncan]

I remember Soderling. I can picture him. I recall, too, when the diagnosis was made public.

One of the many handicaps with ME/CFS, is that even if a celebrity is diagnosed with it, and that is made public, it seems to me that treatments, or lack thereof, are seldom if ever delved into. Or how the celebrity is fairing over time. The battle for effective ME/CFS treatments doesn't garner much-needed air time.

Venus Williams struggle with Sjogrens may be a related small exception, but I follow tennis, and I can't recall ever a discussion regarding her treatments.

With Lyme, the failure of treatments does frequently factor in. That may be attributable to that, like sharks in the ocean, ticks evoke a kind of primal revulsion, and most people either live or visit locations with ticks. So maybe TV channels know this and are more willing to play to it; it almost provides its own twisted appeal.

 

[heapsreal]

@duncan
federer also had mono that knocked him around for awhile . Often wonder if his drs put him on antivirals just in case.

if i was like soderling i would be doing my own research too which im sure he has. Maybe he has done treatment to get him to a level he can manage family and realized that he wouldn't survive the tennis circuit. I think he was destined to be in the top group of guys like nadal fed djokovic murray .

 

[duncan]

He had those two big grand slams where he took it to the limit. He had attitude, too, as I recall, and was unintimidated by those guys.

In the US, we have something called The Tennis Channel. It would be great if they ran an update about him and his ME/CFS struggles, but I won't hold my breath.

 

[Helen]

if i was like soderling i would be doing my own research too which im sure he has. Maybe he has done treatment to get him to a level he can manage family and realized that he wouldn't survive the tennis circuit. I think he was destined to be in the top group of guys like nadal fed djokovic murray .

I can´t see from articles in Swedish newspapers if he got any antiviral treatment. I doubt. He is working (organizing Stockholm Open) and having a family. He is exercising, tennis and also golf, and still dreaming of a comeback although he suffers from exhaustion after exercising and some PEM. I think it would be possible for any of you to get in contact with him. PM me and I´ll see what I can find out.

Edit: He is on FB and Twitter. He might appreciate some good advice from you.

 

[halcyon]

I think late-stage Lyme disease and ME/CFS are rare kinds of conditions where even having half a billion dollars won't get you very far treatment wise. I often ask myself what I would be doing differently if I won the lottery and the answer I come up with is nothing, except I would hire people to clean and cook for me.

I think the only thing they do that we don't is waste their time and money travelling to South America or Asia to have things like stem cell therapy or plasmapheresis.

 

[SOC]

@duncan ..but you would think the rich celebs would see the best private lyme docs out there, at the outset..?

Money doesn't help if you don't know who to see. Celebs may have even less time than we do to research the issues of these misunderstood illness. They probably trust their high-priced PCPs who tell them the usual crap and send them for CBT and GET.

 

[duncan]

Helen, that is very nice to offer.

I apologize for the thread detour, but I love tennis and used to play a lot. One of my closest friends was a line judge and used to do the US Open. He called matches with McEnroe and was even yelled at by him. My wife and I belonged to a tennis club where Navratilova played Chris Evert, and my wife got changed with them. How silly and shallow of me to even reference that. But I miss it terribly and I cannot even begin to feel what Soderling must have felt or still be feeling.

 

[heapsreal]

Helen, that is very nice to offer.

I apologize for the thread detour, but I love tennis and used to play a lot. One of my closest friends was a line judge and used to do the US Open. He called matches with McEnroe and was even yelled at by him. My wife and I belonged to a tennis club where Navratilova played Chris Evert, and my wife got changed with them. How silly and shallow of me to even reference that. But I miss it terribly and I cannot even begin to feel what Soderling must have felt or still be feeling.

Same, but i follow whats going on at the ATP tennis site and follow the young aussies coming through. Isner is looking promising this year for u guys?

Helen just message robin to google his name on PR. He sounds like he would be a good candidate to see Dr Lerner. The money the top players can make it would be worth them getting ampligen too? One good tournament would easily pay for a years worth of ampligen.

I myself could afford ampligen but i wouldnt be able to eat for a year haha

 

[duncan]

Isner is improving, but the knock against him is he has the feel of a tall Andy Roddick.lol. The US is in desperate need of some young talent, at least on the male side.

Ok, I'm done. I will not talk another word of tennis - unless I can tie it into this thread.

Or any other...

 

[Daffodil]

re: money and lyme treatment, i have to disagree. most patients would know at the outset that something is wrong and it isnt depression. most know that exercise is not what they need.

granted, if they read the CDC websites, they could get sidetracked, but the olsen twin has been dealing with this for years apparently. wouldn't she have people to research this for her? there are so many lyme websites about what to do, one could find the info pretty quickly, i would think.

...and with money, she could just google "top lyme doctors" and go to one!

i don't know..maybe after 22 years of collecting info, i don't realize how the general public deals with this stuff.

 

[Daffodil]

there are also plenty of things someone with money can do if they have CFS. Cher seems to be able to tour with the disease. i think she goes to Germany for adaptive immune treatment, but i am not sure. she has commented on how expensive her treatments in Germany are.

 

[Vitalic]

Just shows how powerful mistaken illness beliefs can be, even celebrities are not immune to it! Hopefully someone will contact the family and let them know she just need a few weeks of cognitive behavior therapy and she should be back to normal.

 

[duncan]

Daffodil, why would either of the Olsens suspect Lyme unless they know someone with it? If anything, they are more insulated from that sort of thing, I would imagine. Also, here in the US, most PSAs - if I can call them that - are made by IDSA types like Wormser who are publicly dismissive of Lyme as a meaningful disease - or at least no more consequential than a nasty bout with the flu.

So if they developed symptoms, they would have to have had a doctor that was capable of sifting through the controlled spin of many years of prominent reports downplaying the threat from Lyme. One that would have thought to test for Lyme in the first place. And one that knew how to then interpret the results, results that perhaps were outside of IDSA protocol.

Even then, if they got directed to a good Lyme literate MD, there are no guarantees treatment would be successful or swift. Yes, they have more money to experiment with, but, no proposed or promoted cure that I am aware of is a sure thing yet in the Lyme world. No amount of riches can change that.

That is even more true, obviously, for ME/CFS.

 

[Daffodil]

maybe ashley olsen is just herxing. you can herx for a very long time, too

i read that yolanda foster helped avril lavigne by giving her a lot of info so maybe lavigne will end up at KDM's like foster did.

 

[5150]

Daffodil, why would either of the Olsens suspect Lyme unless they know someone with it? If anything, they are more insulated from that sort of thing, I would imagine. Also, here in the US, most PSAs - if I can call them that - are made by IDSA types like Wormser who are publicly dismissive of Lyme as a meaningful disease - or at least no more consequential than a nasty bout with the flu.

So if they developed symptoms, they would have to have had a doctor that was capable of sifting through the controlled spin of many years of prominent reports downplaying the threat from Lyme. One that would have thought to test for Lyme in the first place. And one that knew how to then interpret the results, results that perhaps were outside of IDSA protocol.

Even then, if they got directed to a good Lyme literate MD, there are no guarantees treatment would be successful or swift. Yes, they have more money to experiment with, but, no proposed or promoted cure that I am aware of is a sure thing yet in the Lyme world. No amount of riches can change that.

That is even more true, obviously, for ME/CFS.

"why would either of the Olsens suspect Lyme unless they know someone with it?"

This subject is making me nuts. Is Lyme contagious other than the "maybe sexually" placed on it by the CDC?
This seems extremely important to know, yet the pace is slow toward anything certain.
If only via sexual contact, why are clusters prevalent , including with Family Members? doesn't add up.

 

[5150]

I think the only thing they do that we don't is waste their time and money travelling to South America or Asia to have things like stem cell therapy or plasmapheresis.

I read about Steve Jobs' efforts vs pancreatic cancer. Now there's a guy whose "money" should have saved him... if ever it were possible. He said to the effect, that he regretted not going against it with Western medicine for so long. He tried the alternative approach(es) too long, without success. Then he was too far behind it all to come back.

I certainly feel restrained as to what's possible to achieve without enough money to try it. No Doubt.

 

[Daffodil]

cancer is a little different, though. money cannot save you from cancer once it is past a certain point

 

[Daffodil]

Daffodil, why would either of the Olsens suspect Lyme unless they know someone with it? If anything, they are more insulated from that sort of thing, I would imagine. Also, here in the US, most PSAs - if I can call them that - are made by IDSA types like Wormser who are publicly dismissive of Lyme as a meaningful disease - or at least no more consequential than a nasty bout with the flu.

So if they developed symptoms, they would have to have had a doctor that was capable of sifting through the controlled spin of many years of prominent reports downplaying the threat from Lyme. One that would have thought to test for Lyme in the first place. And one that knew how to then interpret the results, results that perhaps were outside of IDSA protocol.

Even then, if they got directed to a good Lyme literate MD, there are no guarantees treatment would be successful or swift. Yes, they have more money to experiment with, but, no proposed or promoted cure that I am aware of is a sure thing yet in the Lyme world. No amount of riches can change that.

That is even more true, obviously, for ME/CFS.

maybe the olsen twin didnt suspect lyme at first, but the article says she was diagnosed with it years ago.

anyway, who knows where these journalist bloggers get their info. most of it is usually wrong.

 

[Valentijn]

Money doesn't help if you don't know who to see. Celebs may have even less time than we do to research the issues of these misunderstood illness. They probably trust their high-priced PCPs who tell them the usual crap and send them for CBT and GET.

Yeah, I think the doctors of celebrities have even more pressure on them to always have the answers. Which can have really bad results in any situation.