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DDS
Member

Reged: 09/08/06
Posts: 13
Loc: Bucks County Pennsylvania
Got my numbers =again- with one tiny mistake
      #208143 - 09/22/06 07:12 PM

So I called my HIV doc again today because I haven't heard from in a week. He's still trying to reach these other universtiy doctors for 6-7 days now!!
So in speaking with him he gives the results of my 1st (and only) blood work- Turns out my CD4s are 535, not 500, but my VL isn't 100,000, its 630,000!!!!!!! Over six times what he originally told me!!!

He wants to do another blood draw Monday because he "believes" my VL will drop percipitously because I'm in the acute stage and because my symptoms are going away and I basically feel fine. So, that means, next Friday til I get those results and the following Tuesday I see the university doc in person, myself. So, I'm just going to have to hang in there till then, becasue this guy doesn't really know what to do with me (he's and ID doc too) because he's never seen and acute case of HIV infection before.

I'll probably end up on a clinical trial at the university.

Hope this doesn't sound like ranting, but its so frustrating to sit here and wait for all this stuff.

Dan

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Bear60
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Reged: 12/21/05
Posts: 1390
Re: Got my numbers =again- with one tiny mistake new
      #208186 - 09/23/06 12:55 AM

Where are you going for medical care???? I mean our area has had lots of experience with HIV... and I refer to the Philadelphia area...... and there are great Infectious Disease doctors around. I know it may be too soon to tell but do you feel that your doctor is the right one for you?

--------------------
6 ft tall poz bear in Philadelphia

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DDS
Member

Reged: 09/08/06
Posts: 13
Loc: Bucks County Pennsylvania
Re: Got my numbers =again- with one tiny mistake new
      #208246 - 09/23/06 06:04 PM

Bear,
No I don't really have that much confidence in him now. I'm seeing Dr Frank at U of Penn on 10/3 and I think I'm just going to go under his care, if he'll take my case.

Who is your doctor?

Dan

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alivehoping
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Reged: 04/05/06
Posts: 655
Re: Got my numbers =again- with one tiny mistake new
      #208266 - 09/24/06 12:36 AM

i would like to think your getting some knowledge here and the first one i can agree with is getting a doc whos knowledgeable in the feild.its important to be able to beleive in the doc who has your life in his hands,get another doc for a comparison if need be.look up the aso in your area and find a doc who your comfotable with and listens to you and not just hear you.its important to know and be stress free at least in this major life dission,the bear knows what hes saying to you,its real and he doesnt mince words for your sake or anyones for that matter.it strange territory if your doc isnt into the latest knowledge base out in the world today.good luck to you.take care

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Got my numbers =again- with one tiny mistake new
      #208299 - 09/24/06 09:56 AM

DDS please let us know what study you may be looking at.... There are quite a few of us who have done this research and are on studies ourselves... Please be sure your terminology is corrrect when you say Trial vs a study... Very very different!!! One is risky, one is not...

I am not overly happy with your docs communications with the University, but this is NOT uncommon...

Love

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DDS
Member

Reged: 09/08/06
Posts: 13
Loc: Bucks County Pennsylvania
Re: Got my numbers =again- with one tiny mistake new
      #208332 - 09/24/06 02:33 PM

Trial vs Study? I thought they were the same thing.
What's the difference between a trial and a study?



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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Got my numbers =again- with one tiny mistake new
      #208337 - 09/24/06 04:11 PM

Trials usually refer to meds and or combo's that have not been tried and proven over time.. You are the guinea pig.. High Risk.

Studies are usually tried and proven regimens that might be running to test meds head to head that are already been around for a good long time... Not risky.

Still, be very cautious about what you choose... You must have a great deal of faith in your ID Doc and he had better be an ID Doc that is not working on theories or hypothosis. There are to many first line regimens out there that do not require you to place your health in any kind of jeopardy.

Understand?



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DDS
Member

Reged: 09/08/06
Posts: 13
Loc: Bucks County Pennsylvania
Re: Got my numbers =again- with one tiny mistake new
      #208376 - 09/24/06 09:43 PM

Yes, I get it now. I'll be careful and won't jump into anything right away. I'll check with you guys first too and do my research.

Thank you so much


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Got my numbers =again- with one tiny mistake new
      #208385 - 09/24/06 11:10 PM

Last point - Drop your potential trial/study off with the MEDS team in ASK THE EXPERTS. They know pretty much every single trial and study out there thats viable...

Cheers,

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