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Yolanda foster

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Posted 4/19/2014 9:29 PM (GMT 0)
Look. We need someone with money to make a difference. Lyme gets less than 200 thousand a year in reaserch funding. Yolanda is doing ZERO for LYME. Go to her websight. You can't contact her, she set it up so you can only BUY things on her site. Lyme funding is the key and she could easily raise money with all her rich friends. I have Lyme. I came from a wealthy family that isn't wealthy anymore, but I know how stuff works. She could easily give a million towards this and write it off tax wise. The fact is we need MONEY for RESEARCH otherwise doctors won't take this seriously- more importantly insurance companys! If I was wealthy I would take responsibility for those that cannot. Join me in the fight. try and contact yolanda any way you can. I have a sinking feeling that she was able to get better by paying out of pocket for expensive treatments that most of us can't afford and then moved on with her life.
Posted 4/19/2014 10:22 PM (GMT 0)
She did pay for expensive treatments. She was treated at Sponaugle for 6 weeks. She also spoke at a Gala event that raised over $1 million for Lyme research.
Posted 4/20/2014 12:19 AM (GMT 0)
I'm going to have to disagree politely with you on that one. The biggest issue with lyme disease is changing the perception of the mainstream medical community. Money won't fix that, but awareness will.

Yolanda has made a huge difference in regards to being in multiple articles in high-volume publications speaking about her difficulties with lyme. She is using her celebrity status to raise awareness.

I'm for one, grateful for her contributions.

~beth
Posted 4/20/2014 2:19 AM (GMT 0)
How does "awareness" do anything when the diagnosis is controversal? If we have better tests (which will require research) then there won't be any controversy. Right now chronic lyme isn't recognized by mainstream doctors or the CDC. The CDC endorsed a document as recent as 2007 that claims chronic lyme is an autoimmune response to borrellia bacteria. Guess what! No one is even researching their claims!Im seeing a doctor that won't claim it's Lyme she's treating to the insurance company because she would get her liscense pulled. What kind of system is that? WE NEED MONEY FOR RESEARCH. I can't believe you people are disagreeing with that Im seriously asking you.
Posted 4/20/2014 2:41 AM (GMT 0)
I'm not sure where you are getting your information from pants but it is inaccurate. Yolanda is still being treated for lyme disease. She just spoke about it less then a week ago...

Most on this forum are fighting to get well, so contacting a celebrity to try to get them to fund research is probably low on their list.

Even if we have a better test there is no guarantee that mainstream doctors will jump on board, we are getting more options and better test methods. Two were released within the past year, one being ispot and I'll have to google the other one. And I don't see any Infectious disease doctors going, 'ah yes, now I can believe lyme is real.'

Awareness has done a lot of things. Just talking to people about your experience with lyme would help. Make a difference any way you can with what you have. I have little doubt that many users on here, were they millionaires would be putting a nice chunk to lyme disease research but that would be their choice. I don't have millions to give and I wouldn't ask someone else to do it because they have it.
Posted 4/20/2014 2:54 AM (GMT 0)
We could throw all the money in the world at this issue, researching, working our tails off to get to the bottom, the truth. The real issue, as I see it, is not that we lack anything, it's that the ones making the rules, the ones that have the control over the testing criteria, what the medical field is allowed, and the 'factual' info that isn't provided although readily known and available, this is where the issues start and stop.

There is better testing available and even being used...it's not okayed by the CDC for reasons of their own.

There is real, facts available, but again, not in mainstream as this isn't what the ones holding all the cards want to happen at this time.

It's all a numnbers game, numbers in meaning the money. It's always, follow the money. Who is to gain for things to be the way they are now, and who has the most to gain and how? These are the questions to be asked. It's all out there to read and understand. It's all about money, and thus control of info and options. It doesn't matter who loses. That's never the issue for those who are holding the cards.

Where does that leave us? That's the billion dollar question. I say, do what you are able, find what treatment you are able to find and afford, and hope for the best. Also, talk, write, express your situation, and keep trying whatever that means to you.

I know what it feels like to want to get the attention of those who have the means to DO SOMETHING!!! That doesn't work for me, now, as my energy must go towards helping me. Maybe one day I'll have the energy to be more of an advocate. Right now, it's all about me. Tough as that reality is for me to embrace, it's my reality today. If I don't do for me, I won't have anything for anyone, as I won't have a tomorrow.

I hope you find the help you need. It's so hard to deal with the illness and then all the crap trying to get the help we so need. Hang in there.

I agree we need this to be researched and addressed today. Until those that hold the cards decide to change things, I'm not sure what else we could be doing except make a lot of noise. I wish I knew.
Posted 4/20/2014 3:02 AM (GMT 0)
Ok. Lets take Yolanda out of this. Yolanda aside, money is needed for Lyme research. If you don't agree with me you are not encouraging change/cure. I cannot believe you said doctors would not "jump on board" if there was better tests. My MD said that was exactly the issue, and that the medical community needed to agree through more research that isn't currently being done. Im NOT misinformed, I have made it my full time job to be informed since I got sick. I am suprised at your lack of support for raising money to stop something being controversal. I think in 20 years it won't be because of research. We need to support that. I suggest you and others read Cure Unknown by pamela weintraub. This is too serious a subject to be sensetive about. We should scream from the rooftops. It needs as much attention as cancer. I know it has crippled me for years.
Posted 4/20/2014 3:08 AM (GMT 0)
In a coon now. You said "it's not OKeyed by the CDC for reasons of their own" That is my ENTIRE point. We need to change CDC standards. How do you do that? Through money/research. Period. Hep c wasn't taken seriously for years neither was fibromyalgia. You have to prove to the government that this is real, otherwise we pay out of pocket when we shouldn't.
Posted 4/20/2014 2:14 PM (GMT 0)
I have to agree with Opugirl and In-A-Cocoon. It is first about awareness, media attention, political attention, then about money. I think it is not right to reproach Yolanda that she is not donating. First of all, she has been donating, and secondly, she is still fighting this infection, I think we all know the amount of energy this is taking from us.

I'm at the other side of the world. It works the same way over here.
Belgian Lymies have almost started a stampede on the media, there are a few politicians that took the matter into hands, and next week, there will be a round table at the Belgian Senate about Lyme Disease, with Dr Horowitz as a speaker.

The costs of research on a high scale are so high, that a few donations coming from private persons can't cover that (see costs research on HIV/AIDS), I think that it can only get done with government involvement. Therefore: awareness, media attention, political attention.

MarieLS
Posted 4/20/2014 3:53 PM (GMT 0)
The problem with throwing money at the problem is that finding a cure will stop the flow of the funding. Big Pharma isn't going to do it if they can sell Billion$ worth of maintenance drugs that only minimalize the symptoms.

A better solution would be to create a Special Nobel Prize for a Lyme Cure with the $Million dollar, no-strings-attached bonus attached to it.

Then you would get results!

There is no Nobel Prize for Biology because Dr. Nobel's wife ran off with a Biologist or so the legend goes!

It would be relatively simple to create a vaccine specific to Borrelia's Outer Surface Proteins (antigens) it uses to attach itself to the smooth muscle tissues of the the circulatory system and the heart and collagen.

The original vaccine only addressed the antigen or antigen's found in the Borrelia straight out of the tick's gut, not the ones expressed after the spirochetes dispersed into the mammalian tissues.
Posted 4/20/2014 6:52 PM (GMT 0)
First, your assuming it would be maintenance drugs. That might not be the case with some big bucks and a few years. They might come up with a cure, which would be worth billions. But I agree that it would be better to have funding coming from a non bias group. This is where certain individuals with money would be helpful. My mom is friends with a couple that just gave 10 million to a florida university for alzheimers studies. Thats the direction I hope Lyme will go. I think we can all agree that it's understudied.
Posted 4/20/2014 8:28 PM (GMT 0)
lol - Yes to pants. Lyme is understudied, please don't take my comment that I don't think money and research would help- it definitely would! I just wouldn't approach a wealthy person soley or expect them to donate a significant amount of money-more power to them if they do!

You are right about focusing on yourself, to heal, before other activities. Something we must all do to heal!
Posted 4/20/2014 8:55 PM (GMT 0)
Happypants, welcome to the forum! The Alz studies wouldn't bring Lyme disease into the picture, even though Lyme can put a person in that state of health. They probably also wouldn't bring drug side effects into the study, which can also contribute to it. They just tend to look for a new drug to make more money off too much of the time. There can be so many things that contribute to neurological diseases.
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