The Infectious Diseases SA, Lyme Guidelines review Further discussion.

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veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/8/2009 9:22 AM (GMT -7)   
So I have been watching the clips over and here and there. I forget the lady who was the director of occasions and she was nice and all but was worrieing me. she kept saying she wanted a map from the CDC of disease. A map that showed distribution of disease now, And she wanted it now. I thought wouldnt it be innacurate if it were done now. It needs to have about 6 months of ticks being tested and testing of every person in the world (Hahaa i wish) by igenex western blot at least, to have anything near accurate.

How about the tone of some of the speakers against changing the guidelines. Did you hear how they were speaking as if they were saying ("and ive told you a thousand times before, this is the way it is and dont ask me again, it is a waste of my time. People have unexplained medical symptoms that cant possibly be persistent antibiotic resistant lyme. I have no evedence of this but i told you before that this is the way it is quit talking about it")
Do you know what I mean it was like they were so annoyed.

Do you guys thing the panelists get it? Im scared.

I hated when the panelists asked a meaningful question and i felt like the speaker didnt answer well in any way. They asked Steven Philips why patients become seronegative and still have Lyme, I felt i wanted more to be said about why. i got scared when questions were asked and an answer wasnt a bullet good answer.

Although he was the best speaker. And some of the speakers for us i thought why did they even pick this person to speak for us. The one who had white spit built up in the side of his mouth by the end. He was not to good.

what do you guys feel about all the details of the day.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Post Edited (veromia333) : 8/8/2009 4:27:43 PM (GMT-6)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/8/2009 11:32 AM (GMT -7)   
I thought Steven Phillips was amazing. I thought his presentation was so strong the panelists would have a hard time disagreeing with his evidence. I thought his answers to the questions were very well thought out. Maybe I am alone in this one, but I thought he represented us better than any of them. Even Dr. Burrascano said we should be yelling his name from the top of the highest mountain. Thank you Dr.P.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/8/2009 3:22 PM (GMT -7)   
Believe me i thought he was the best also. Maybe i just wish they had all the time in the world to say everything i wanted to hear the panelists hear. You know what I mean.
He was the best. I do agree. I am just scared . I hope everything comes out in our favor.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/8/2009 3:32 PM (GMT -7)   
Let's keep our fingers crossed!

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/8/2009 3:40 PM (GMT -7)   
Oh and about the question they asked him about reasons patients were seronegative I think he was right on the mark by saying as time goes on, the spirochetes change into cyst form. (and other forms,too)Therefore they don't release the antibodies. So the test is negative. Still active infection. That was the theme throughout his entire presentation.

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/8/2009 5:16 PM (GMT -7)   
Your right Lovey I am just nervous. My Daughter just testing positive and i dont know how i wail pay for treatment. Without some favorable outcomes the currents situations we face. And the fear of not being able to treat her because she is so young. Thanks for clarifieing . I also am in a bad mental state. M<y brain is wonderful i love it when it is healthy. But right now i cannot even see through my fatigue and fog to understand alot.

Please Lord let this doay of July 30th 2009 be enough.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/8/2009 7:30 PM (GMT -7)   
Regarding LoveLabs, who said, 'they asked him about reasons patients were seronegative I think he was right on the mark by saying as time goes on, the spirochetes change into cyst form. (and other forms,too)'

I have been meaning to get around to more research on syphillis and spirochetes in general, but it's tough covering everything, ya know....

Does anyone know -- Does this statement apply to syphillis also? And does anyone know what the IDSA has to say about syphillis -- and it's ability to remain dormant for as long as 50 years?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/8/2009 7:41 PM (GMT -7)   
Ide like to know everyones opinions and observations.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/8/2009 7:42 PM (GMT -7)   
You know with me I went 9 months before I had any treatment(2wks of doxy at that point), then another 5 months before my LLMD put me on real treatment. I tested neg through quest and igenex only a few bands pos and a couple "ind" on igenex. I never herxed until I was put on mepron. Cyst buster. Herxed again very badly on plaquenil, cyst buster. Obviously to me that is what happened. Bacteria changed form. How else would you explain that. Interesting,huh?

I don't get the whole syphillis thing. Wonder what those do that have it. Heard tests stink for that, too.

And V-hope you feel better soon. And so sorry to hear about your little girl. I really feel that something has to change. Hoping they just include ILADS guidelines so doctors will have a choice. Hang in there!

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/8/2009 9:08 PM (GMT -7)   
Thank you for your responses you hang in too.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

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