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beckham

Useful Info on Obtaining a Western Blot

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So, I've been reading about the Western Blot for a while and I've decided it's time to get one.  I've learned a lot and wanted to pass along some info.  First of all, avoid Terri Warren.  She seems to be very focused on generating revenue for herself and less focused on your well being.  Do not go through her....she will just charge you for things that the University of Washington can provide for free.  And Terri is not an expert in HSV.  Call this number to speak with the UW staff who are very helpful:  202-685-6066

You can also visit their website:  http://depts.washington.edu/herpes/

In short, they can send you an information packet and a kit that you can take to your local lab.  They simply need someone to draw the blood for you.  You can ship yourself or the lab may ship for you....just bring a prepaid shipping label.  I've yet to contact my lab so I'll update this post after I learn how willing they are to draw the blood.  The price quoted by UW was somewhere around $220.  They quote a 3 week turnaround time but generally you'll have your results before then.  

I'll update when I know more.

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@New2GH  Great question.....yes, you do....but your general practitioner can do that.  I plan on using the portal that my doctor uses for the request so I don't have to pay for a visit.  In fact, I'll do that now.

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Thank you, I have received a lot myself. My normal Kaiser physician said they could not order outside tests so I have an appointment with Planned Parenthood tomorrow to see if they can order it. Unfortunately, I will need to pay an additional $150 for the exam first before they will order anything but it's worth it to know if I have H for sure. 

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I'm reminded that persistence, really is a strength of mine. After three clinics would not order the Western Blot test for me, I just started calling every clinic within 50 miles until I finally got someone who would order it for me. If you are having trouble getting someone to order the test, I suggest you call as many clinics as you need until you find someone who will do it. 

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@UnluckyMan In regard to Terri.....let's just say that I don't get a good feeling about her.  She seems to come across as abrupt and conceited about her knowledge.  I've been on her forum and I've read her responses to people with symptoms.  I've read her stance on nerve issues multiple times.  She flat out denies that nerve issues / twitching is a symptom of herpes.  This woman is sitting on a gold mine of an opportunity to advance the knowledge and treatment of this awful virus and she's worried about making money off forum posts.  Having a medical degree is great, but that doesn't mean you stop learning.  When multitudes of people are coming forward with the same symptoms maybe that's something you should be researching instead of flatly dismissing.  But that would require interrupting revenue generation.  Furthermore, when a doctor tells a patient they don't have something, the patient goes forward into the world and continues to infect others because of bad advice.  Somehow or another she's obtained the label of expert.  Just because you have a website and forum on herpes doesn't make you an expert.  My general physician showed more knowledge and insight than Terri did.  Just putting it out there so others don't take bad advice.

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@Strength123  I'm sure you know already but for those that don't, UW sends a kit to your home.  That kit contains in depth lab information that you can take to a lab.  What I learned is that when I called labs and asked for the WB they said they didn't conduct that test.  Well, true.....only UW does.  What they need to know is that you just need them to draw your blood and then you ship it to UW.  My thought is, some local labs will do that.  You just need to walk in and discuss with them in person and hand them the information.  I think walking in would be better than the receptionist on the phone who will probably dismiss you b/c it doesn't fit into one of the boxes in their system.  I'll be heading down to the lab once I get the info....probably Monday.  I'll update after.

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Update:  Received doctor's sign off for blood test.  Took the UofW info down to my local lab and they were able to draw my blood and centrifuge it and pack the box for me.  Took it to FedEx for overnight shipping.  UofW is open on weekends so you can ship on weekends if you need to.  The charge from UofW is $226.  I had to pay FedEx $100 for overnight shipping....plus $25 for the lab fee.  Altogether about $350.  Results should be received in about 2 weeks.

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I didn’t feel really good after reading her forum either. I was wondering if she is a doctor? I saw their introduction says she is “nurse practitioner” with a “master of science degree as a nurse practitioner”? Isn’t doctor supposing to be M.D or D.O?  Anyone can help to explain so I can learn? Thanks! 🙂

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My neurologist says it’s safe to say that the muscle spasms are a reaction of hsv2... I hope other specialists continue to acknowledge this as a symptom.

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@beckham

I'm so glad you posted this info, and that you agree with how I feel about Terri. She basically dismissed me as a a liar when I asked her about lab results and fluctuations in the antibody numbers. She was not compassionate at all. I paid $20 and was dismissed and did nor get an ounce of helpful advice. All she wants to do is sell her book and western blot test, while touting that hsv 2 in incurable. She also has stated that Valtrex has no effect on labwork, only to state on other posts that it does. She very much contradicts herself. I was very disappointed with her service. Maybe she us just burned out, if that's the case. Stop having people pay when all she does is talk about the western blot. That's her standard response to everything 

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What affect does valtrex have on bloodwork? Also what does the western blot test do? And how long after being diagnosed should u wait to take it? 

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@Jane M Thanks for sharing your experience, Jane.  It's unfortunate that you and others have to experience that.  She pushes the Western Blot b/c she profits off of it.  She is charging for things that anyone can do on their own with no markup.  I'll admit the Western Blot is a good place to start but the more I'm learning about this virus the more I understand that even a negative result doesn't necessarily mean you aren't carrying some strain of a herpes virus that is not being detected.....which goes back to the research that needs to be ongoing and updated.  

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@Jenn88  Hi Jenn.  I can't expound much on the Valtrex / bloodwork stuff...you may just heave to read up on the research yourself.  scholar.google.com will give you access to research articles.  In regard to the Western Blot, they suggest waiting up to 16 weeks for the test, though when I called they said 12 weeks should be sufficient.  Speaking of, if you want to speak with someone very helpful, you can always call the University of Washing Virology Lab...they're open 7 days a week and the people answering the phone actually work there and are friendly, helpful and obviously knowledgeable.  I don't know the specific details about the Western Blot, I just know that it's more comprehensive in its approach and tends to be more reliable.  The results can be up for debate as you're looking at reactive bands much like DNA bands you've probably seen.  They have 3 scientists look it over and come up with Positive, Negative or Inconclusive.  You can read more about it here:  

https://en.wikipedia.org/wiki/Western_blot

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@UnluckyMan  Yes, just got them back.  It came back negative.  So, it seems I may be one of the few that falls into no man's land.  Symptoms still persist but slowly getting back to normal.  I'll continue to update with new developments.  

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45 minutes ago, beckham said:

@UnluckyMan  Yes, just got them back.  It came back negative.  So, it seems I may be one of the few that falls into no man's land.  Symptoms still persist but slowly getting back to normal.  I'll continue to update with new developments.  

Is this for ppl that didn’t get PcR test? 

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What m confused my IgG was positive, my IgM was negative  a month later I took Pcr and it came back negative 

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@Jenn88  It means I have something that does not register as HSV2, even though my exposure to HSV2 is the only thing that could explain my symptoms.  In all the reading I've done on the subject there are some people out there that never test positive....or test positive a year later.  

@Michgirl73  There is some debate out there about which is better, PCR or Western Blot.  Here's a good summary I recently read:

"While PCR test are highly sensitive, meaning they can find even the smallest amount of the virus, they can also come back with false-positives and are not as specific (able to detect a true negative) as the Western Blot. In the case of a confirmatory test, we are looking for specificity not sensitivity.

In my opinion, the Western Blot remains the way to go when it comes to confirmatory testing."

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16 minutes ago, beckham said:

@Jenn88  It means I have something that does not register as HSV2, even though my exposure to HSV2 is the only thing that could explain my symptoms.  In all the reading I've done on the subject there are some people out there that never test positive....or test positive a year later.  

@Michgirl73  There is some debate out there about which is better, PCR or Western Blot.  Here's a good summary I recently read:

"While PCR test are highly sensitive, meaning they can find even the smallest amount of the virus, they can also come back with false-positives and are not as specific (able to detect a true negative) as the Western Blot. In the case of a confirmatory test, we are looking for specificity not sensitivity.

In my opinion, the Western Blot remains the way to go when it comes to confirmatory testing."

Interesting.. my PCR came back as detected is all it said for hsv1. 

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On 10/26/2018 at 9:12 AM, beckham said:

@UnluckyMan  Yes, just got them back.  It came back negative.  So, it seems I may be one of the few that falls into no man's land.  Symptoms still persist but slowly getting back to normal.  I'll continue to update with new developments.  

When you had your initial testing done, did they do IGG testing? If so, what were your numbers? When I called UW, the woman I spoke with said that they have seen the HerpeSelect test having as high as 54% false positive readings for HSV2. That's insane!

I'm considering getting the Western Blot done as well, to see if I fall into the pile of those false positives or not.

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@100918  Yes, my initial tests were IGG tests.....only testing positive for HSV1 in the 30-40 range every time.  HSV2 was always below the threshold so it never registered a number.  If you want to speak with someone at UW give them a call....I found them to be very helpful and friendly.  They can detail the steps they take and then you can decide if it's a good fit for you.  Their number is on the UW Virology Lab website.  

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