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Was I Misdiagnosed?


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Hi, there. New to the community, and so glad I found it.

About a month and a half to two months ago, I was diagnosed with HSV. I went to a Planned Parenthood location for the test, and they tested for others as well, including Syphilis and Chlamydia.

I have an open sore inside my vagina, close to the opening (pardon the TMI), and it has been that way for months. Like, seriously, since July of 2010. So I figured I should have it checked out.

The Nurse Practitioner took a swab to culture. When she got back to me, she said the test was positive, but that they were unable to type the HSV. This struck me as odd right off, but I went with it.

So I was prescribed Acyclovir, to take three times a day for ten days to get rid of the sore. I did so, and abstained from sex, but there was literally no change in the sore's appearance. So I took the medication for another five days as suggested. Nothing.

Here I am, weeks later, and there's still no change. I haven't taken the medication anymore because it wasn't helping. I do have sex occasionally, and my partner is very aware of the situation, but the thing is... he hasn't had any outbreaks period.

If it is herpes, I know who it came from. It wasn't this fellow, but one I'd been intimate with in an interim time when my relationship with him wasn't working out.

But then at the same time, if it is herpes, wouldn't he have, most likely, had symptoms or an outbreak by now? Wouldn't this SINGLE SORE have healed and gone away in a few weeks' time? Wouldn't they be able to type the virus easily from an open wound?

I'm just so confused and frustrated because I dumped so much money out of pocket into this diagnosis and treatment, but nothing is working. I'm still in pain and I have to deal with this unpleasant and uncomfortable presence every day.

I called PP back to tell them that nothing worked, and the best they could do was tell me that they don't know what's wrong and that I should contact a dermatologist. Since nothing they've done for me has worked, should I take that route, or see an OBGYN?

I'm uninsured, a part-time worker and student. I want to get this taken care of, but I don't have the money to keep going to places to have them tell me they don't know what's wrong and don't have the means to figure it out.

Any advice?

Thank you so much to anyone who even reads this. I know it's a novel.

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I personally would go see a gynecologist or go to the ER. I went to the ER when I was first dx because (1) it was on a weekend (2) I would have to set an appointment and wait even longer. I however, have insurance so I know it would be difficult for you to take that route since you don't have insurance. However, some ER's have a payment plan and are willing to work with you financially to make payments. I would trust and ER or gynecologist more in my opinion. Also if the sore hasn't went away it doesn't sound like herpes to me. Herpes usually can take 4-6 weeks to completely go away maybe a little longer if you don't take the suppressive meds. I took the acyclovir 5 x a day for 10 days but it took from the time it started until I got on the meds from the ER a total of 6 weeks before I felt normal again. I also got my period during that time shortly after the outbreak started so that could also play a factor in getting healed completely. I hope you can get some answers soon! Also if your boyfriend hasn't gotten a sore yet I would think he would be safe but the only way to know for sure is to get a blood test. You could also do that yourself to get a blood test done than you would know for sure. Good Luck!

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Did they take a swab that didnt show HSV? Because there has to be a certain amount of the active virus present for a swab to even show a positive. You dont mention if you've had an Igg blood test. That would be the next step, since symptoms have been present since July, it should be accurate. In addition, yes, seeing a specialist is a good idea....if you're concerned about funds you could check out medhelp, they have specialists answer questions for $20, and theres a lot of good info in the non specialist section as well.

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Thanks for your input, Denise07. I'm looking into getting an appointment with a gyno at the beginning of February.

Visionblue, they took a swab of the open sore, sent it to culture, and it came back positive, but they were unable to type it. So I don't know if I have HSV-1 or 2. Well, I know I have HSV-1, as I've had cold sores since I was a little girl, but they're very infrequent, happening every two years, if that.

I have not had a blood test and did not have one recommended to me. I suppose when I go to see the gyno, I'll ask about it, but I don't want to get another positive reading and have them keep suggesting treatments for this sore as herpes if that's not what it really is.

If I'm going to spend any money, I'd rather just see someone I'm confident in for a small fortune than continue to dish out the menial funds that just keep building up into no answers. I have a feeling my condition is one of those things they'll have to continually test to rule out what ISN'T happening for the sake of figuring out what is.

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    • WilsoInAus
      Hi there @ScubaSteeve and welcome to the website. If you have had genital HSV for 10 years there is a chance the testing did not distinguish type. The answers to the following questions will help a bit: - where are your outbreaks specifically and what frequency? - have you had any IgG antibody testing for HSV?
    • CHT
      Hi LLS.... I'm very sorry you are having so much discomfort from this outbreak.... the first outbreaks are always the most troublesome but  they will get less aggressive as time passes.  I personally find that valacyclovir is much more effective than just acyclovir so you may want to ask your doctor about switching and seeing if that helps.  Ask your doctor on Saturday if you really need to take a higher dose.... and as WilsoInAus suggested, I would ask for a 1,000 mg tablets with at least a 90 day supply to start.  As for pain, you may want to ask your doctor for a Rx of Zovirax ointment.... it contains acyclovir and the ointment form calms the sores down and reduces friction.... it should lessen the pain down there. As for diet, many people, myself included, learn what foods often act as triggers for outbreaks.  I can tell you from experience that the following are big outbreak triggers for me:   1. Too much caffeine (I've basically stopped coffee and have learned to enjoy a variety of decaf teas) 2. Any kind of nuts - including corn and even popcorn 3. Chocolate 4. Too much alcohol - particularly red wines  5. If possible, avoid any kind of steroids/immunosuppressants like prednisone in high doses.... anything that suppresses your immune system will give the virus free rein to run amuck - I learned this the hard way! 6, Stress.... although easier said than done, it will help with your overall health.  Studies show that stress is a common HSV outbreak trigger.... try to find a way to lower your stress levels. 7. lack of sleep.... personally, if I get less than 6  hours of sleep this often leads to an outbreak within a day or two.... work at getting a good 7-8 hours of solid sleep each night (I often use melatonin to help here). Some people find certain vitamins that boost the immune system, like zinc, help with overall healing and can lessen the severity of outbreaks and possibly prevent some outbreaks.  I personally take a number of antiviral/anti-inflammatory/anti-oxidant herbs/vitamins not so much for my HSV2 but for overall health (I don't have the healthiest of diets so, I feel I need to supplement to offset my lousy diet).  A google search of supplements that help with herpes will provide you with a long list of vitamins/herbs that may be of benefit but, try not to get carried away - many/most won't make much, if any, difference.... but, you can always experiment. As WilsoInAus also mentioned, a healthy diet is likely your best option. I should also mention that while some find vitamin C to be helpful, I found it to have the opposite effect.... the more I took the more it seemed to provoke outbreaks.   Things are always the toughest after initial infection.... it's going to get better, trust me.  Stick with the antiviral meds daily, try not to obsess on the fact you've contracted this virus, and try to avoid some of those triggers relating to outbreaks.  With time the number of outbreaks starts to decline and when you do have an outbreak, they will become less virulent. As WilsoInAus mentioned, a lot of your achiness, pain and overall flu-like symptoms are related to the fact your immune system is adjusting to this virus.... these lousy symptoms are just your immune system in action working to do its best to fight this virus... with time these symptoms will also lessen and disappear.   I hope this helps in some way.... please let us know if you have more questions.... and remember, go easy on yourself right now.... turn to those things in your life that calm you and also distract you from obsessing over the virus situation.  You are going to be just fine.... just give yourself some time to get past this initial unpleasant phase.... it will get better, I promise.    
    • Justme88
    • ScubaSteeve
      I was diagnosed with HPV2 ten years ago, which I contracted from an ex-girlfriend who was unaware she had it. Since then, I've lived a reserved life, not really opening up to others. There was only one person I felt interested in enough to share this with, but it didn't work out. There have been a few instances where I've let my guard down, had a night out, and ended up sleeping with someone. I know I should feel guilty about not discussing it beforehand, but I found it challenging because they know my family, and it felt overwhelming at the time, and I had alot of pent up desires from not ever being with someone for a long time.  After finally opening up to someone and realizing it wasn't the end of the world, I now understand that finding the right partner might be a matter of numbers. I desire to have more intimate relationships but need to find better ways to approach this topic and ensure I never spread it.  Thank you all for providing a space where I can be myself.
    • i82much2young
      My swab results won’t be ready for another 5 days. Is there any harm is continuing the Valacyclovir? I was prescribed 1gm tablets for 10 days.
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