PA people

[wdoml]

Just wanted to throw out a post to see if anyone in PA has successfully ordered the western blot or bio kit? Even maybe NJ or DE.  I need to find a doctor that is a bit familiar with this or even open to it.  It would be so helpful!  Thanks!

[wdoml]

Thanks for your input Grace, I am going to go for a second test prob sometime in July and see what happens..feels like this is never ending!! :(   I will also look into the home swabbing thing if I can't get any clear results... I'll get in contact with Terri.  

I am losing hope on this!!

[gracefromHHP]

I'd certainly repeat the WB. they'll compare the 2 side by side and often you get more accurate answers that way.

Another option is to make arrangements through Terri Warren's clinic to do home swabbing daily for a month or two to see if herpes is detected.

best of luck!

[wdoml]

Also, I feel it prob doesn't matter when I re-test. The Western Blot I think says 10 weeks after ( I could be wrong)  but I have been testing low positives since last year... so I don't think the length of time of when I get tested really matters.. I have not been with anybody new.

[wdoml]

Okay...sorry its been a while, but it took a little long for everything to get together..

Doctor called me today and said my results came back intermediate. Uhhh! He said basically it is pretty much the same as my herpeselect test prob, just at the borderline.  He said he thinks its leaning more toward that its prob positive, but he read me exactly what it said on there and said he will gladly help me get a second test done, he just doesn't want me spending so much money. Im getting a second test in July.

Now What?!? I mean I got 3 low positives from herpeselect

March of '10    1.15
April of '10        1.2
Feb  '11           1.16

Western Blot   -  intermediate    


What am I suppose to think??? Do I just drop it and get on with my life and just accept that it is most likely a positive?  



PS: Rsem I tried responding back to your messages! But for some reason i dont think they ever went through!  

[rsem]

Hi yes I called the University of Washington and they said you did not need the prescription but the Virology report has to be filled out (they send the results back to the physician on the form authorizing the test).  I added the RX w/the form but you dont need it just the form.  I think I got the RX b/c I had the blood drawn at a clinic and showed them that and the report (remember quest was giving me trouble w/a standard request).  

[wdoml]

Rsem prob knows more than I do but...your doctor needs to fill out the virology report that comes with the test, that shows his upin#, his address ( where the test results will get mailed to),my doctor also signed the bottom ( there is no signature on the paper) however he signed anyway... he also needs to fill out a request for you to get your blood drawn.

I am assuming that if your doctor fills out the virology report with all of his info, and also has the box " Herpes Group - HSV1 & HSV2 antibody by Western Blot, and wrote out a request for you to get your blood drawn ..that would be kind of the authorization and approval from him.. that is what I would think..

[wdoml]

Wow..thanks..you didnt have to call!! I appreciate that a ton!!  I also read in literature somewhere that you needed a RX included ..and i remember you writing it also, so I thought it was a must, but if not that will make things a little easier for me.  All I need to do now is call my doctors and get that quest order he wrote...for some reason I left without it.  How the heck did you find that upin website?!? You are pro at this. Or I am just really bad at this process! Ill try and use that, when i call my doctors office ill double check his upin#.

OK i feel like im somewhat getting somewhere with this....

Ill keep you posted with things.. thanks so so so so much for all your help and info..really its been such a huge help!

[rsem]

Hi..I called the University of Washington (just now) and they said you don't need a written RX just the Clinical Lab report.  You do need that upni number on there.  I found a website that you can look up upni numbers and my doctors came up lol.  Also the receptionists at most doctors offices or nurses there know the doctors upni number and can input it there as well on the report.  Here is the website where I found my doctors just now:  http://upin.ecare.com/  

I can't remember why I added the RX w/the report I don't remember if I read it some where or I was just being extra cautious b/c a RX pad has the doctors address, fax and phone number on it too (remember I am a bit OCD).  

I am so glad your doctor was so glad to help you my primary was the same way.   When you go to quest bring just his orders keep the virology report on hand w/you maybe in a bag if they need further explanation.  After they give you ur sample fill out that part where it says date and time collected.  After you get ur sample put the check and the virology report together in the ziploc on top of the Styrofoam box and ship w/fed ex.

[wdoml]

Just got back from my doctors appointment and it went really good!! I was pretty nervous, but asked if I could get the Western Blot done, and then started explaining the info.  He said it seemed like i did my homework on it, and  didn't know how to go about getting the test, but would certainly look into it for me.  However, I told him i already ordered and called University of Washington for more info on it and had everything for him.  He basically said "Wow" and how impressed he was with the research i did  and was very interested in seeing the outcome of it. We were talking about it for a bit, he seemed almost as eager as I am. He said if I wanted I could try and use their lab and go down to ask them if they would, and if not to just go with my original plan of using Quest. ( I didn't have much time to go to their lab, so I will try with Quest)
Have to say that made me pretty happy that he was willing and interested

So basically he fulled out the Virology sheet for me, however I noticed on the way back he didn't fill in the UPIN#.

Also, he didn't fill out a "RX' for me,  he did fill out a sheet for quest diagnostics for me to get blood, but he actually has it, so can I just bring the virology sheet to the lab? and then send that with my blood work?

[wdoml]

Thanks so much! That is BEYOND helpful.. thanks for doing that. I have it all printed and highlighted...im really hoping after that he will agree.. uh nerve racking.  


I will let you know how things go tom!


Thanks so much!!!!!!!

[rsem]

Yeah I found something for you it is in PDF format.  It is from Focus Technologies (the group that made the herpselect test for quest).  They not only compare their test to the WESTERN BLOT but talk about false positives on pages 3 and 4 of the 7 pages.  Here is the link:  http://www.focusdx.com/focus/packageInsert/EL0920G.pdf.  Here is what I would highlight from page 3:Report results as index values relative to the Cut-off Calibrator. To calculate index values, divide specimen optical density (OD) values by the mean of the Cutoff
Calibrator absorbance values.
1. The High Positive Control index value should be greater than 3.5.
2. The Low Positive Control index value should be between 1.5 and 3.5.
3. The Negative Control index value should be less than 0.8.
If the Calibrator or controls are not within these parameters, patient

Here is what I would highlight from page 4:  5. As with other serological tests, false positive results may occur. Repeat testing or testing with a different device may be indicated in some settings, e.g.,
patients with a low likelihood of HSV infection.

If the manufacture of the test is using the western blot to use as a guide to test their own accuracy rates obviously the western blot is the "gold standard".  The whole reason I pursued testing was because I had absolutely no symptoms.  My doctor told me that sometimes patients have no symptoms...ok but I still wanted the test regardless of what she said..it is my Body and my health and that is what a doctor is supposed to do be your advocate in keeping you healthy.  That should be reason enough.  Print that PDF out and highlight that stuff.  Print out all the stuff I told you about the University of Washington and how they conduct their tests.  Good Luck tomorrow :)

[wdoml]

So I go in tomorrow for my doctors appt...and im so nervous :/   Any last pointers I can say to him to help convince him I need to get this test done so he doesnt think im just reading stuff online and have no clue what im talking about. I tried looking up the CDC herpes testing outlines and for some reason I can't find where they talk about confirming with Western Blot.

ahh this is nerve racking, i hope he understands!

[rsem]

Let me know how things go.  I am so glad we all found this forum and are able to help each other.  Good luck and best wishes.  Any questions feel free to inbox me.

[wdoml]

Goodluck! Let us know how things go!

[rsem]

Hi..I actually just reprinted the Virology report to remember what I filled out.  When I went to my doctor I filled out the following:  Ordering physician/phone (I put her name and number there), She filled out the UPIN number on the form.  I filled out my name, dob, checked female.  I checked serum for specimen type and the day I had the blood drawn and spun is when i filled out Date and time collected.  ICD I left blank I think but I guess that where you would put HSV 2.  I filled out the send report to which was my doctors address(her name address and phone number) and my address under patient address( telephone number and SS#).  I checked the box in the lower right under herpes group hsv1 and 2 antibody by western blot and highlighted it.  So the only thing my Doctor did was write on her blue RX note pad Check for HSV 2 by Western Blot and her upin number.  

After I did all that I went to a walk in clinic a few days later w/the report, the instructions on how to draw the blood.  In my car b/c I knew I was going to FedEx later that day I had a cooler w/the ice pack in it on top of other ice packs (I am a bit OCD lol).  I had the kit the box in a bag w/me when i went to the clinic w/the specimen bag and tube.  So when they came to draw my blood i gave them the little tube (the printed a label w/my dob and name on it and time collected) and handed it back.  I put it in the specimen bag, then the Styrofoam box w/the ice pack on top, then in the box.  I taped the box shut and put the stickers and my address and their address on it.  I then drove to FedEx and they put it in another box w/bubble wrap around it and my shipping slip w/the lab address and my address went on top.

The day I had my blood drawn I had the ice pack in a cooler w/other ice packs.  I had like 4 other ice packs w/that ice pack in a mini cooler b/c I had to wait at a clinic for about an hour.  

I hope everything goes smoothly for you.  If your doctor is a pain about it I would look into that John Hopkins program.   Hell..I would call to make an appointment just in case and if your doctor gives you a problem at all w/getting the test you have a back up option in place.  Let me know how it goes.

[wdoml]

Okay so my doctors appt is on thurs... ah im getting nervous.. but I just want to make sure I have things figured out correct.

Okay so assuming ( and hoping ) my doctor agrees to let me get this test done I need to do these following steps:


1. Doctor fills out the clinical lab virology request that came with the actual Western Blot test in the mail
        - he needs to write his name ( Ordering physician), phone #, upin #.  It also says sender  specimen #    - I am not sure what that means.

        - Date and time collected ( im assuming quest fills that part out when they draw the blood)
  
        - ICO9/Diagnosis    - not quite sure what that means either


The Virology sheet goes on to say:

Send Report To:  

My doctor or I fill out his office address

Fill out my name address and info


Subscriber name - I wont be using my insurance so I guess I can just leave that blank. Ill be sending a check instead.


Finally he needs to check the HERPES GROUP  HSV 1 & 2 Antibody by Western Blot

So does he only need to fill that out and be done with it? He needs to fill me out a script or RX as well right?


Next is when I go to get my actual blood drawn.

Im going to try and make an appointment with quest for this weekend. My main concern right now is getting the permission from my doc so i can go - then i can setup an appointment at quest.

I am trying to get the link you mentioned earlier on the exact instruction of drawing the blood for Western Blot, its not working on my comp for some reason- ill keep trying!

I need them to write my name and dob on tube

Write out my check to university of washington , put in a zip lock bag along with my virology report

Place ice pack on top of tube in the styrofoam box, place box in shipping box, put all the stickers recieved on outer box.

Bring to fed ex- over night it

Question:  Is it best to leave my ice pack at home so it stays frozen, and come back after my blood is drawn to pick it up real quick? Or should I just bring it along? Don't know if it really matters- just figured if i left it at home while doing the blood work it would stay frozen.


So so so sorry this is so long, I just want to make sure I have it all correct. However, getting my doctor to write out this report is what im scared about. Im going to print out that link to focus you had in your other post that states how low positives should be retested by another test.  Also, im going to let him know that John Hopkins Hospital in Baltimore Marylan ( not too far ) is currently one of the hospitals doing a study on false positives with herpeselect and retesting with Western Blot, they are recruiting people now to do just this!  ( Heck im better off just going up there and getting it done so i dont need to explain myself!)


whew- ok sorry that was so long :(

[gracefromHHP]

it's not worth a 3-5 hour drive each way for a biokit!!!!


grace

[Mistakeguy789]

William if you are needing help why don't you start your own thread and we can help you.  No need to hijack other threads.  

[william28]

nope... did u ?

[wdoml]

Thanks for your response...if things dont work out with the Western Blot and im not able to get the blood drawn, I will consider Ohio.  


So youve had symptoms but yet still have negative results?  Have you ever got swab tested when you had a symptom??

[wdoml]

Thanks so much rsem, I appreciate your words of kindness! Ill try my best to think good thoughts throughout this.  Whatever the outcome may be, I have to move on with my life. I  have a bf that is accepting of all this, and has been for the past year when I first got diagnosed. I feel forturnate that he never judged or never started to look at me different in any way, things never changed between us, which is something I value so much.  

Anyway, your going to feel so good walking in her office with those test results :) I can't help but not smile because I think that is so great


Will keep you posted!

[william28]

I have symptom many times but with negative blood test... its crazy and very tricky virus.

[rsem]

Think good thoughts.  I never had one symptom at all and that is what drove me to get the Western Blot.  If I didn't find this site and someone like Grace I would have been taking medication I did not need and I already have prescriptions for other health conditions.  Like I said think good thoughts and relax.  I know it is hard to say that but I have been there!  I am going to see my ob/gyn on Friday at 930 to bring her my western blot results..that should be interesting to say the least!!  I will keep my fingers crossed for you. If you need any other help let me know.

[william28]

U can find a biokit clinic in OHIO it close to PA ...