Topic: Will I always have to drive 2 hours or more to get treated for Lyme?
tailz
Unregistered
posted
Supposedly they are reviewing the Lyme guidelines, but my question is 'when'? When am I going to be able to see a local doctor for treatment for my Lyme and co's?
I really think I need IV Rocephin again.
Also, I'm wondering if IV Mepron would be covered under my medical, instead of my prescription?
Malarone is not covered at all under my prescription plan, and Mepron is covered, only I can't afford the outrageous copay.
I see Dr. B tomorrow, and I'm just tired of this routine. Just tired of everything.
I want to be able to see a doctor that is within reasonable driving distance from my home - not have to drive 2 or 3 hours each way, sitting their starving for 4, 6, 12 hours, waiting to be seen. It's not like I can go sit at Burger King with my food allergies.
What is the word on this though? Have they chosen the panel members yet at least? Or is that process going to take a decade to accomplish, and then another decade yet for their new 'verdict'?
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Tailz,
See Adams post today about Mepron....Someone replied that Glaxo-Smith Kline re-imburses co-pay.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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We just have to pray the right people are chosen Posts: 371 | From CT | Registered: Jun 2008
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ByronSBell 2007
Unregistered
posted
Man, I wish I only had to drive 2 hours to see my LLMD....
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i drive an hour in heavy traffic. don't think i could do more tho...
i know some who drive all the way to louisiana and it's 5-6 hours for some and they have to spend the night in a hotel.
i wonder, too, when pcp's or other doctors will recgnize lyme. i don' think they ever will....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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tailz
Unregistered
posted
So what was the point of calling for this review when nothing substantial is going to come from it?
Why did Blumenthal drop the anti-trust investigation? Could he have continued with it?
I need Rocephin again, and there is no way I can drive this distance daily - if I could, I'd be working. I can't even drive this distance weekly with how I respond to cell phone tower radiation.
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posted
I wish we only has two hours to drive. We drive 9 hours each way to get to our LLMD.
We probably could have cut a cuple of hours off, but we found one who accepts our insurance.
THat is a bid deal when me, my wife and daughter all need to be treated.
Georgia is pretty much hopeless when it comes to doctors unless you want an ID doctor.
I hope someday this changes
Posts: 65 | From Georgia | Registered: Oct 2007
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Angelica
Unregistered
posted
I feel for the Canadians who have to fly down here for treatment. I have not been on an airplane since I was diagnosed. With the price of airline tickets going up and hotel prices I don't know how they or the Europeans coming here do it. At least the dollar being down helps the Europeans out but not us.
The furthest I drive these days is to see my LLMD and it is under an hour and 40 minutes from here if traffic is good. I use to drive all over the place before I got sick and think nothing of it.
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my mentality says i will NOT SEE THIS IN MY LIFETIME happen!!
it's either 15-18 states including iowa that have NO FULL-TIME CHRONIC LYME DRS!!!
how lucky many of you folks are.......
right now, let's give this new committee to BE SELECTED THE BENEFIT OF A DOUBT that they will find things wrong! let's look at the glass is HALF FULL....not empty.
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tailz
Unregistered
posted
I'm hoping Betty is right here. I really don't think I can continue these 2 hour drives each way.
I feel bad for those who have to drive even further though, but my electrosensitivities can make a 20 minute drive to the grocery store unbearable, not to mention unsafe.
I'm going to hope for the best, but I don't know - it's not looking very promising. I honestly don't know how the original Lymies got through the last couple decades.
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IDSA Seeks Panel Members to Review Lyme Practice Guidelines
The Infectious Diseases Society of America (IDSA)is seeking physicians and scientists to volunteer to serve on a review panel to determine whether the Society's 2006 practice guidelines on Lyme disease should be revised or updated.
IDSA has entered into an agreement with the Attorney General of Connecticut ending his antitrust investigation of the Society's Lyme disease guidelines.
Under the agreement, the guidelines remain in effect; but IDSA is agreeing to an extra step: a one-time special review of the literature to determine whether the 2006 Lyme disease guidelines should be revised or updated.
The timing of this review is consistent with the usual practice of reviewing published IDSA guidelines for changes every few years, but is distinctive, in that the review will be conducted by an independent panel.
To that end, a panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease.
The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration.
At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated.
Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel.
Medical ethicist Howard Brody, MD, PhD, of the University of Texas Medical Branch, Institute for the Medical Humanities has been jointly selected by the Office of the Attorney General and IDSA and will serve as an ombudsman who will screen applicants for potential conflicts of interest.
Also, of interest are the selection criteria of of this independent panel and it's chair.
The time committment of panel members is described as:
"It is estimated that the review process will take eight - 12 months.
Over this period, members of the review panel will be expected to participate in several one- to two-hour conference calls and attend at least one, two-day, in-person meeting that will include the public hearing.
Panel members will be required to critically review the literature on Lyme disease.
It is estimated that this and any necessary e-mail exchanges will take 10-15 hours per month or two-four hours per week." ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So it looks like it will be Oct '09 before they even begin to be through. =/
Posts: 155 | From Texas | Registered: Oct 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Taliz,
They are choosing panel members right now, they have chosen one at this point (and he looks to be against medicine - I don't know about this guy) But even then, first it is only to "vote" whether or not the guidelines really need to be re-written.
The process will take up to a year.
If they are rewritten...that won't mean every mainstream Md will understand Lyme and treat it, you will still need to see an LLMD.
2 hours isn't bad really, I have to drive the same distance. Pack some food and bring it with you.
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