posted
Is there any clinical trial for Lyme disease at NIH. IF so does anybody vlounteered for the treatment.Please let me know how did it go. Do you recommend volunteering for the trials.
Posts: 46 | From Maryland | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey healthy...
Welcome to LymeNet!
I checked and don't see any new trials for Lyme disease right now at the NIH.
If I did see any, I would advise NOT to enter them. I'd have to say RUN, don't just walk away from the NIH.... RUN and RUN fast.
The results so far from their 2 trials have been "spun" to be used against patients needing treatment. They are constantly being used (cited) by the IDiots to deny people treatment and also by the IDSA's new best friend.... the insurance industry.
I've NEVER, in 25 plus years, heard from anyone who has had anything good to say about them regarding Lyme and most of the patients and health care professionals I know feel their research/conclusions suck... due, in part, to conflicts of interest.
Therefore, in my opinion, the NIH has not been helpful to Lyme patients over the years and they have a LONG history of some really incredibly bad goings-on.
For example- One of their Lyme program employees was sued, demoted, sanctioned, etc for harassing a Lyme organization and doing other bad deeds and continues to be a pain to many chronically sick people.
Once busted for being a bad boy and stomping on Lyme patients, he whined to Congress- to the one known to help whistle blowers- complaining he was being paid big bucks for doing nothing at the NIH. Boo hoo hoo.
Another, who just retired from NIH after handing out Lyme research grants, went directly to working with the ones he gave the grants to... the ALDF.
The ALDF is an infamous group known throughout the Lyme community as being promotors of everything that went wrong concerning Lyme disease and especially, their "no such thing as chronic Lyme disease" theory.
Basically, in my opinion, they are nothing more than a bunch of toads.
ALDF consists of members who have been busted by Attorney General Blumenthal when he did an investigation into fraud, anti-trust, monopolization and exclusionary conduct related to the Infectious Diseases Society of America (IDSA) Lyme Disease Treatment Guidelines.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey healthy...
Welcome to LymeNet!
I checked and don't see any new trials for Lyme disease right now at the NIH.
If I did see any, I would advise NOT to enter them. I'd have to say RUN, don't just walk away from the NIH.... RUN and RUN fast.
The results so far from their 2 trials have been "spun" to be used against patients needing treatment. They are constantly being used (cited) by the IDiots to deny people treatment and also by the IDSA's new best friend.... the insurance industry.
I've NEVER, in 25 plus years, heard from anyone who has had anything good to say about them regarding Lyme and most of the patients and health care professionals I know feel their research/conclusions suck... due, in part, to conflicts of interest.
Therefore, in my opinion, the NIH has not been helpful to Lyme patients over the years and they have a LONG history of some really incredibly bad goings-on.
For example- One of their Lyme program employees was sued, demoted, sanctioned, etc for harassing a Lyme organization and doing other bad deeds and continues to be a pain to many chronically sick people.
Once busted for being a bad boy and stomping on Lyme patients, he whined to Congress- to the one known to help whistle blowers- complaining he was being paid big bucks for doing nothing at the NIH. Boo hoo hoo.
Another, who just retired from NIH after handing out Lyme research grants, went directly to working with the ones he gave the grants to... the ALDF.
The ALDF is an infamous group known throughout the Lyme community as being promotors of everything that went wrong concerning Lyme disease and especially, their "no such thing as chronic Lyme disease" theory.
Basically, in my opinion, they are nothing more than a bunch of toads.
ALDF consists of members who have been busted by Attorney General Blumenthal when he did an investigation into fraud, anti-trust, monopolization and exclusionary conduct related to the Infectious Diseases Society of America (IDSA) Lyme Disease Treatment Guidelines.
posted
Thank you verymuch Tincup. Yesterday I called an LLMD and came to know that I may have to wait until October in order to get the appointment. Then this clinical trial caught my eyes.If the trails are no good for the people then I don't think going there is the good decision. But I think there are other clinical trials as well. If you know the information could you please let me know. As I am new to this I need some advise and guidance.
Thank you very much for holding me.
Posts: 46 | From Maryland | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OUCH ON THAT! October?
I'm sorry to hear you have to wait so long!
You are very welcome for the info, btw.
I don't like to see patients walk into a devil's den because they don't know what to watch out for... and often assert my opinions in order to protect folks... especially our children who suffer.
Anyhow...
The ducks... quack quack.... are on the rampage to prove none of us are sick, we are just nuts.
Example- Here is a report, just sent to me today, using some big ducks from a big duck hospital. Funded by the NIH.
I don't know where you are in MD, but if you send me an email... use your screen name so I can figure out who you are... I will give you some info.. IF you'd like.
posted
Thank goodness I came to know about this website. I was completely dumb about this Lyme disease, I don't even know what it is when I was diagnosed. My naturopath just told me that I will be tested for Lyme, I don't know what it is. I just did my blood work. The result was positive in the conventional lab test itself. Then I started googling the lyme then visited this site and registered. I think I did a good job by sticking to this website.
Since Jan 09 I have all the symptoms. I have blurred vision, eyes itchiness, pink eye. Then my GP said to go for a eye test. Like this I have many symptoms but the doctors said to check for the particular symptom. I am not responding to my thyroid medication and after listening to all of my symptoms my naturopath suspected that I may have Lyme. Today here I am.
Once again THANK YOU Tincup
Posts: 46 | From Maryland | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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