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  1. @Faith8 I'm about 8 months out and I have never tested positive for HSV2, yet still have strange aches, pains and nerve issues....mostly all on my right side. My right jaw (near my ear) is sometimes incredibly painful. The swelling makes my teeth misalign. My right wrist is also very sore and swollen. My right pinky swole up like I broke it and has never returned to normal and I'm 2 months out. The nerve twitching continues to persist in my legs. All this comes and goes....each ailment usually last a few days to a few weeks, subsides and then comes back again. Very unpredictable. I wish I had better news for you.
  2. @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.
  3. @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."
  4. @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.
  5. @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
  6. @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.
  7. @tomorrow I didn't even bother to read up on her credentials, but that makes sense. And yes, a "real" physician is an MD.
  8. 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.
  9. @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.
  10. @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.
  11. @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.
  12. 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.
  13. @UnluckyMan I didn't take it in the beginning strictly for that reason. I've never read anything that supported that idea but it sounds logical enough.
  14. I'm posting an update so that there is some sort of "ending" to this thread. I am now about 3 months post exposure. Last week I tested negative again. The only stereotypical "lesion" I had appeared on the top of my thigh and it was small. It went away and scabbed over and then another, smaller one popped up next to it but was so small it didn't scab over. I figured that was my sign to get tested again as I thought that would trigger a positive. It didn't. The lesion appeared on a Friday and was gone by Monday and I didn't want to go to the Dr on a weekend....again. I probably should have. I went to the Dr. not long after that to get Valtrex since my ears continued to ache. I've been on Valtrex for 2-3 weeks now and I'm about 95% normal. My twitching has gone away and the tingling is mostly gone. My right ear still pops and "gurgles" like I'm recovering from a sinus infection. Now that the twitching is gone I can sleep some and no longer rely on sleep meds that often cause side effects. So, after 3 months, my body is starting to return to normal. There is hope for those of you out there that suffer serious twitching episodes.....sometimes it can go away.
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