IDSA Panel has been selected

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sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/29/2009 1:57 AM (GMT -6)   
http://www.idsociety.org/Content.aspx?id=13310 - to review the candidates.

http://www.lymedisease.org/news/lyme_blog_2/index.1.html - in laymen's terms.

It's pretty self-explanatory. We will have to stay tuned as events unfold. There are many who are watching out for the Lyme community.

If you know of any ethical concerns regarding the list of chosen panelists for the new IDSA guidelines for Lyme treatment, please use the link at the lyme disease blog above to communicate that information. Stay true to the facts, please.

It is a long journey home; but it will come... Keep faith.

Blessings,
Sojourner

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/29/2009 1:06 PM (GMT -6)   
bumpity bump

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/29/2009 1:28 PM (GMT -6)   
Thanks for posting sojourner!!!

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/29/2009 6:09 PM (GMT -6)   
Thanks for the post sojourner, I will pray for a good outcome for us all!!
 
 


Joanne A
Regular Member


Date Joined Jul 2006
Total Posts : 451
   Posted 1/29/2009 7:54 PM (GMT -6)   
Let's get to the reality of this thing!

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/3/2009 12:50 AM (GMT -6)   
I know you are each suffering in different ways and it is difficult to absorb more and more; but, please stay current to the unfolding events of the IDSA re-convene for the Lyme guidelines. This affects you personally and there may be ways throughout that you can be involved and have a voice!

http://www.lymedisease.org/news/lyme_di ... ss/39.html

http://www.lymedisease.org/news/lymepolicywonk/40.html - Atty Johnson will be maintaining a blog through the IDSA panel process.

Blessings,
Sojourner

_________________
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior

www.stylebyheatherrose.com

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/3/2009 10:57 PM (GMT -6)   
try this, Gracie's Mom,

www.lymedisease.org/
Once there, click CALDA News Blogs on right.
Then, click Blog - Lyme Policy Wonk

For those who are not familiar w/the term wonk = policy expert: an expert in matters of policy, especially in government, the economy, or diplomacy ( informal )

I love u, y'know! More than you'll ever know.
Blessings,
Sojourner

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/4/2009 12:08 PM (GMT -6)   
Ah you two stop it...I am getting jelouse...:>)
I am going to go to the link now...it is going to make me angry??? lol
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/4/2009 7:10 PM (GMT -6)   
Then you can just come back here Miss Martha for some more love! HA!

sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/5/2009 9:23 AM (GMT -6)   
I agree with you Frango.

Not one Lyme literate physician is on the new panel. At 10,000/year threshold for determining eligibility, this bumped even those who would perhaps treat on a much lesser ratio of Lyme patient.

I can appreciated that there is a concern for long term abx and their long term effect; but, what confuses me is why there is not an emergent R&D much needed plan in place by the very ones who are 'concerned' to ensure the development of a protocol for both diagnostics and curable treatment.

So much of one side of the table's 'investment' if you will, seems to be related to the denial of and the defense of a position; but how are patients to be confident that those who do understand the deadly consequences of no or late diagnosis (and this is acknowledged by both standards of care represented).

Those who serve in these positions of authority and decision making regarding the very protocols that are needed to provide care offer no answers nor even a plan. No funding for research allocated.

No matter what label is given for the symptoms (ie: post Lyme, Lyme syndrome, Lyme arthritis, chronic Lyme) we have a concern that when the very doctors who have this authority and seemingly express concern for the patient by taking a strong position on extreme narrow treatment parameter are not communicating any level of hope for future resolution to the disease. No allocation of funds; no direction. Just simply, it does not exist on one hand and then, describing symptoms that suggest it does on the other; but a supposed 'fear' (regarding drug treatment) for treating it in longer courses.

This makes no sense and creates the appearance of a wolf in sheep's clothing to me.

I am not a proponent of long term high doses of antibiotics. No one is. No one wants to be in the position that patients find themselves. However, doctors are being forced to use outdated drugs. They are being forced to use combination abx in order to achieve a blood level worthy of killing the unfolding nature of these pathogens that supposedly does not exist; even though we have more and more credible science to prove it does.

We have not had a new antibiotic to address they types of infectious diseases for over 20 years. And there are no bridges in place to provide for this even though emerging science and statistics clearly indicate the pandemic nature of this disease being on the rise. No one is holding the 'gatekeepers' who have been given the prestigious role of publishing such guidelines, accountable.

I think the place to start is a phone call to CT AG office to ask them the ?? you have. And to request a POC for the umbudsman for patient input. What would they recommend? Your questions are valid.

Blessings,
Sojourner

Post Edited (sojourner) : 2/5/2009 8:32:18 AM (GMT-7)


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/5/2009 9:38 AM (GMT -6)   
Frango - In answer to ur ? "Also, what is with the patient input period? "

http://www.lymedisease.org/news/lymepolicywonk/index.1.html

"The Review Panel is initiating a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.

The 60-day public input period is now open. Interested individuals and organizations may submit information as follows:

Submissions* must be received by 5:00 PM Eastern, April 3, 2009 and must include.."
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