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Sharp

At Home PCR Swab Tests!

55 posts in this topic

Hello,

I just got off the phone with the Westover Heights Clinic. I have been talking with another forum member about this, and I called to get more information. The tests are $50 per week (plus the cost of overnight shipping back and freezer packs). I suppose that would make it closer to $80 or so. The test includes 7 swabs and a vial. You swab yourself daily, then send the vial back at the end of the week. They do the testing, and inform you how many were positive for the herpes virus. This could be extremely helpful if you are trying to determine where the virus is located (oral vs. genital) like me, or if you want to do it pre-treatment and post-treatment and see how the shedding rates have decreased!

Anyway, call the Westover Heights Clinic if you want to order them. You may have to speak with a nurse first, which costs $5 per minute. I spoke with them for 10 minutes today for a cost of $50.

Hope this helps someone.

Sharp

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Thanks for posting this. Please keep us updated and if there is anyone else out there with experience with tihs please share. I'm going to inquire about it.

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Hi generic & sharp --

I'm currently doing at home PCR swabbing through Westover Heights. After negative IGG testing and a negative WB, I still don't feel convinced that herpes is not what's going on here (especially since I get cold sores and KNOW I have HSV-1, which is still coming up negative).

I have a little over a week left in my first month. Message me if you have any questions -- would love to talk to others with atypical symptoms/negative results who decided to go this route.

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thanks for following up. i have a phone consultation set up with them next week. do you know anything about the accuracy of the swabs versus the blood tests? Is one more reliable than the other?

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A positive swab is 100% diagnostic, and the PCR swabs are at least 3-4x more accurate than viral culture. It can pick up even small pieces of the virus DNA.

I ended up sending mine in last night after three full weeks of swabbing. I'll be sure to post my results either way.

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So are the viral cultures not very reliable? I've had one, not suprisingly negative. I worry that the PCR swabs are easy to screw up somehow and I'll mess something up that won't get me the accurate result. Was it pretty straight forward?

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Yes, viral cultures are not reliable. If they come back negative, it could be because herpes is not the cause, or it could just be that there wasn't enough virus present, the sample was mishandled, etc. It requires a lot of precision to get the virus to grow out on culture.

The swabbing process was pretty straightforward. The kit comes with instructions about how, where, and when to swab, then you just store the vials in your fridge (though according to Terri, temperature isn't really important) over the course of four weeks. Freeze them the night before you ship, then send them overnight to Westover Heights.

Mine arrived there yesterday, so I should have results next week.

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Thanks, keep us posted. I have a consultation with her in a few days.

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Any update on this Ehbeedub? I just ordered mine from a very reluctant Ms Warren based on my neg WB. She expressed her frustration at me sighting she would only provide one month and then no more. I didn't really know what to say. Now I'm scared that ill get nothing in a month and be totally SOL. I mean seriously. I don't get it, I'm paying for the service, it's my health, I have UNDENIABLE symptoms that numerous docs have NO explanation for other than to say "not hsv" and I'm in absolute fn misery. I would like to be certain of what type HSV I am dealing with here and this stick the head in the sand isn't working for me. Sorry for the rant.

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Strange that she only consented to give you one month's worth. She told me that she likes to have people swab for at least two months if they start.

I sort of understand her position. From where she stands, we are crazy people who have tested negative repeatedly and never seen any "traditional" symptoms. She doesn't want to enable our obsession by giving us the tools to prolong it. But at the same time, I totally get your stance -- I'm paying for it, I want to know, it's no skin off your back. I suppose they consider it part of the "do no harm" thing to deny us when they feel that we've gone off the deep end.

I wish you luck, Onemistake. I just sent in weeks 6&7 worth of swabs, and should have results on those next Wednesday or so. (The first 5 weeks worth were all negative for both types.)

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Personally, if your paying for something, and it's your health, then there shouldn't be a problem. Clinicians of all people must realise going by past experience that they're not always right.

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seriously. I am so damn lost and depressed about this I just dont know what to do. I feel like the chances of me getting a pos swab in a month is probably unlikely since, whatever I have had has been less than obvious this far. Im so done with herpes. Idk where to go or what to do. Its taken over my whole life. I cannot even imagine what to do after this. I mean my family thinks I am crazy a well as the friends I have told. I want the negative blood tests to be true too but the symptoms aren't leaving. Im racking up huge bills with all the other testing to "rule out" everything else. They say I am ridiculous for believing it is herpes but then say I need to look into MS and believe that MS is more likely and that it just so happened to start up after having sex with a new partner one time. But I am crazy.

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Hey dude. I feel your frustration I truely do. Are you in constant pain, every day? How long had this been going on for?

I guess I'm coming around to accepting I have one form of hsv1 and I'm going to have to take whatever life is going to throw at me. Otherwise it will finish me, and I refuse to let this damn virus which gives me the odd poxy cold sore on my lip which I've had for over 20 years wreck my life. I'll keep pressuring other avenues, but maybe you should also stay to think along the lines of grey I got this, and start to accept it, tho not 100% but it may help to think that way? Then if you discover eventually you don't have it then it's a bonus!

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I just got my results, negative. But I'm worried I screwed it up somehow, or I didn't keep the vials cool enough when I shipped, etc. I'm guessing its really hard to pick anything up with those. I was doing it myself and I have no idea what I'm doing. I just rubbed the swabs around a bit. Not usre if was even picking anything up. She only gave me about 3 weeks worth. I used two and sent them in. Kept one week incase I have an outbreak on a weekend or something. I didn't have much faith in it to begin with s I'm not surprised I didn't learn anything new.

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Ya I am in constant pain. I literally feel like I have a disease, not a "skin condition" as so many affectionately dismiss it as. I feel it every time I breathe. I'm someone who loves life and is literally weighing whether or not life this way is actually worth it. I have no family of my own, only parents and siblings who would of course be devastated. But it has me questioning absolutely everything I'm sad to say.

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Ok three things spring to mind...

1) has your Dr prescribed you any tablets for nerve pain? Such as amitriptyline?

2) have you seen a neurologist?

3) you mentioned a while back about a PT finding your pelvic floor to be tense, it may be worth following this up more. A lot of the symptoms we suffer can be attributable to pelvic floor dysfunction. One way to know would be to try laying in a hot bath for a while and trying to relax as much as you can.... The pain should ease off temporarily if it is pelvic floor related....

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1) I have been taking 25mg of amytriptiline and was recently on 900mg of neurontin. The neurontin seemed to work at first. But I began feeling very dense and I'm supposed to be a damn engineer. And eventually the tingles came back. was then additionally prescribed Zoloft because the shrink thought I needed to be further drugged at which point I began hallucinating for two days. I've stopped everything now except Xanax at night. The amount of sleeping aid I have been taking is also crazy. I take zquil and Benadryl at night plus Xanax just to get to bed. It was no surprise with all the drugs I began tripping out and now I can't stop shaking.

2) I am working closely with the neurologist she prescribed the neurontin and wants a brain MRI which ill do but it will show nothing. I already know what I am dealing with and it isn't MS. I'd bet my soul on it, well almost.

3) I take baths and try to relax as much as I can. Xanax is the only thing that seems to bring me down. I'm a mess.

Before all this I would maybe need a Xanax like once a month or even every couple months. Now it's 1mg almost every day.

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Wow, that's some serious pain killers going on there.

Not being medically qualified obviously I'm just speculating here, but, I know herpes can be painful, and symptoms linger, but yours sound really extreme, almost like nerve entrapment.

There is something called Quercetin you could try - its a natural product and people with chronic pelvic pain swear by it. Its a natural and very powerful anti inflammatory. It has no side effects. Its found in tea, red wine etc. You can buy it in tablet form and take 500mg tablets 3-4 times a day.

For some people its effects can be felt in a week or two, for others it may take up to 3 months, it may be worth a try. Just i'm wondering if there is an inflamed nerve somewhere, this may help calm it down. Worth a try?

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I guess it wouldn't hurt to try. Ya I am not having any fun in life right now.

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One mistake - I'm really sorry for what you're going through, and the lack of a definitive diagnosis. I'm going to sound like a quack now but it does sound like this is a situation where it's a vicious circle where the unknown breeds anxiety and stress.

My suggestions are (take them or leave them) to look at your stress levels. Try relaxation, meditation, and have a regular aromatherapy massage (I'm a practitioner myself and swear by them!). Decreasing anxiety levels and not just by meds will help any condition. As a bonus, I expect you're lacking touch and this will provide that too.

Hope that helps. I'm in no way minimising your symptoms though.

X

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Ya, it sucks feeling like a leper and having no one touch you. I'm a good lookin guy who's lost all confidence in this mess. Very lame. Just had a momentary lapse of reason after a divorce and now I'm stuck forever I guess. Never evenn had a chance to be permiscuous. I already struggled with panic disorder since I was 15 years old, this just really put me in overdrive. I literally can't relax without some kind of medicine now. Maybe ill pay someone to touch me as you suggest. Better than none!

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Don't adopt those feelings. Most of my adult life I've abstained from sex. I think I've been active a total of about 5 years out of 24 total years of possible sexual activity. There are quite a few people with H out there and I know quite a few more who don't seem to even understand or care what it is.

BTW: % say 1 in 5 are +, that's nearly 20% for you to fall in love with

You'll find someone! Patience! Cope! best you can is all I can say

P.S. Stay away from Escorts and Hookers! Or easy sex, there are worse infections than H. I hear of cases of Chlamydia that never clear, over many years. Rip through the scrotum, inner workings, etc... STDs are no joke and H is a SKIN condition solely, fortunately for you and for me

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It isn't just a skin condition for me. It's wreaked havoc on my entire system.

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They certainly know how to take advantage of people with a medical disease. $5.00 a minute? That's crazy. Terri should be ashamed of herself.

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Can someone give me a bit more information about this PCR test kit? Where to order, etc.? I have unresolved symptoms and sores that erupt daily, but they are rapid-cycling, and by the time I get a dermatologist appointment to be swabbed, it's usually 72+ hours later. I would love to try this testing kit to see if it helps clear things up.Onemistake- I truly believe that individual biology dictates how bad the herpes symptoms are. I consider myself a biologically sensitive person. I tend to get neurological side effects for many illnesses. Panic and the mind are, at their root, just an extension of the nervous system, so I completely sympathize with what you're going through, and how the virus has effects all over your body. I've found, not to sound hokey, but that aside from just psychologically, relieving mental stress the best you can does help some of the symptoms in regard to lessening severity, but they don't go away. I honestly think there may be some strains that cause people to have autoimmune reactions that mimic symptoms, or some people may need more meds to suppress or clear the herpes, or a different variety (maybe a non-acyclovir derivative), but people are reluctant to try them on us because it is "statistically" rare. I'm having a similar problem right now. Hang in there!

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