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» LymeNet Flash » Questions and Discussion » Medical Questions » FDA to rule on new drug for chronic Lyme

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Author Topic: FDA to rule on new drug for chronic Lyme
paulieinct
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FDA to rule on clinical trials for new drug to treat chronic Lyme:

http://www.prweb.com/releases/prweb2012/4/prweb9353599.htm

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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lymeboy
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Really?
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koo
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I do love irony. Both these institutions are in Texas, you know, the state with no Lyme.
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Razzle
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More info:

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/3546482-new-chronic-lyme-drug-candidate-vgvl

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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migs
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I am tired maybe but this is good news for some.

Basically it is for symptoms caused by inflammation that are completely post infection? After you are cured of the Lyme infection and antibiotics have no effect on your symptoms, this will?

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tricia386
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How will this work?

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Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Lymetoo
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Call me the skeptic.

--

"leading Lyme clinician at one of the nation's top medical centers"

--and who the heck is THIS referring to?

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--Lymetutu--
Opinions, not medical advice!

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paulieinct
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quote:
Originally posted by Lymetoo:
Call me the skeptic.

--

"leading Lyme clinician at one of the nation's top medical centers"

--and who the heck is THIS referring to?

I'm assuming it will be one of the good guys, possibly Dr. F, Columbia Univ. Lyme Research Unit.

He was previously a recipient of funding by the same group that is funding these trials.

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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paulieinct
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quote:
Originally posted by tricia386:
How will this work?

From what I understand, the drug will remove or replace "self-peptides" with "targeted peptides". The theory is that many of the symptoms we feel are the body's over-reaction to small amounts of infection.

So I'm guessing that this drug will allow the body to kill spirochetes without attacking tissues in joints, nerves, etc.

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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paulieinct
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Here's a link to an excellent video that talks about the new treatment:

http://youtu.be/NE8TsU9S5sw

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Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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tricia386
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Is it dangerous? What are the side effects??

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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lymeboy
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The video is extremely low on details. I am having a hard time feeling good about this.
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aiden424
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Well I really hope it works!

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You never know how strong you are until being strong is the only choice you have.

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jarjar
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I will be very interested in following this. The inflammation blockade is a big part of this disease.
I had positive results from the Marshall Protocol and Medsonix both of which go after inflammation.

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'Kete-tracker
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So how can the FDA consider a drug for "the treatment of chronic Lyme" if the IDSA sasy the condition doesn't exist??
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aiden424
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I was kind of wondering that myself!!

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You never know how strong you are until being strong is the only choice you have.

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annxyzz
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I am not too hopeful. I have very little inflammation and have felt fluish since 1996 .

I think they are not facing the fact that lyme is a bacteria unlike others - novel .

Almost insulting to think that we do not still have an ongoing infection, since there are thousands of us saying the same damn thing OVER and OVER and OVER .

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annxyzz

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aiden424
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I have HUGE problems with inflammation!!

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You never know how strong you are until being strong is the only choice you have.

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jer69
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I am not clear about the top IBM exec that they are saying is funding this research. Indeed some have told me that he actually have taken this experimental drug therapy himself- about this I can't seem to get any real information.

If he did get a lot better from this treatment that would certainly mean something. j

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jeremy

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shazdancer
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KT said, "So how can the FDA consider a drug for "the treatment of chronic Lyme" if the IDSA sasy the condition doesn't exist??"

Ssh, don't tell 'em, and then if it works we can say, "Told ya so!"

I have it from a LLMD that this is one of the good guys working on this, with funding through Time for Lyme. Cross your fingers.

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paulieinct
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quote:
Originally posted by annxyzz:
I am not too hopeful. I have very little inflammation and have felt fluish since 1996 .

I think they are not facing the fact that lyme is a bacteria unlike others - novel .

Almost insulting to think that we do not still have an ongoing infection, since there are thousands of us saying the same damn thing OVER and OVER and OVER .

I don't believe they are denying that there is chronic infection. They talk about targeted-peptides being able to go after borrelia.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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