Herpes Expert?

[OutOfWit]

If it looks like a duck, walks like a duck it's a duck right?

 

This is a direct quote from my gynecologist when I was given my first visual diagnosis. That was the closest I have ever come to having a doctor take me seriously.

 

Just got off the phone with Terri Warren the herpes expert and she has indeed served me another round of dissapointment. I explained my situation to her and she told me "well if you had cold sores as a child it's not genital Hsv1. I thought even the majority of web md, mayo clinic websites have gotten the memo that yes indeed it is possible to have hsv1 both places. She also told me that it is impossible to have daily herpes outbreaks. I don't understand why doctors and nurses alike can't think outside the box. It's a virus- a living thing, of course it can be unpredictable. Just because most cases present a certain way does not mean every case will. She did agree to send me pcr swabs in the mail. As much as I would love to have some mysterious disease... I would like the satisfaction of finally getting the diagnosis of herpes so that I can be treated accordingly.

[2Legit2Quit]

It is possible to get it in both places and I'm shocked she told you that, especially w how highly they speak of her on here. Yes it lowers the risk, but it's still possible. The risk of spreading it a year is low, yet I had sex one time and got it... A risk is a risk.. Period.. No matter how minor and shouldn't be dismissed.

[OutOfWit]

It's so outrageous! When I questioned her she followed up her statement by saying well you could but it's less than one percent.

[whitedaisies]

All these experts and Dr work on probabilities and likelihoods and whether your body responds to meds to help them formalize an opinion. It's what they do. Absence of a positive swab it is what it is.

 

It sucks when we are in the small minority bc we feel we are not heard or getting the right treatment. I know the feeling of frustration.

 

At times I think it prevents experts or Dr from getting a whole approach about the virus...maybe skewing their ideas of probability.

 

Best you can do is advocate for yourself. You can't convince someone who doesn't want to be convinced. And just be persistent and move forward.

 

Good luck

 

Higs

[2Legit2Quit]

@girlnamedhope , whitedaisies is the one I told you about in the same situation as you. You might want to talk to her on it.

[WCSDancer2010]

That's disappointing ... Terri Warren is one of the best in the business ... but she's a human and unfortunately our "advanced human brain" is actually really good at getting stuck in boxes and making assumptions.

 

So remind me, how were you diagnosed? Did you get a positive H1 swab down there?

[OutOfWit]

@WCSDancer2010 no just visual. The two swabs I have had done were not caught in time. I have every single symptom. Tingling nerve pain itching burning... Blisters on vagina thighs buttocks. Can't wait to get these swabs back positive so someone will take me seriously. I have a new spot every single day.

[WCSDancer2010]

Well, then, I'd talk to @whitedaisies as she's having the same problems and we are getting her to go to a Rheumatologist as there are autoimmune things that can cause genital lesions ... we are looking at possibly Behcets or Lupus right now ... I'd start looking for other causes for the lesions if you can't get a positive swab because it IS possible that it's something else all together ...

[OutOfWit]

I really think it is genital hsv1. I just need to find out why I am having daily outbreaks

[whitedaisies]

It could be both for you too like it is for me. Autoimmune and hsv1.

 

These bumps and lesions could be h and could also be an overreaction from the actual virus. It will be really hard to tell.

 

I would strongly suggest a rhumatologist I know you think its hsv1 BUT there is a reason why your body can't control it and it could be autoimmune. I didn't think I had one either til I started putting things together after a while.

 

Anyway Hang in. Take steps to help you prove and disprove to help you figure it out.

 

 

[OutOfWit]

I absolutely agree! I'm just so tired of living with these symptoms the prodromes are constant and I'm so tired of waking up to them everyday. I just want a positive swab and then go from there

[whitedaisies]

That's what I also said. Haven't got one yet $2000 later

[ihaveittoo]

Way back when I first got herpes I had three different outbreaks swabbed and they all came back as negative. The last of those was swabbed when the outbreak was less than 24 hours old. It was after that last swab that I finally got to talk to a doctor.( I was in the military at the time. Before talking to this doctor all I ever dealt with were corpsmen.) The doctor examined the outbreak visually then proceeded to ask many, many questions about my outbreaks. He finally told me that he believed from what he saw and the answers I gave to his questions that I had herpes. He said 30% of herpes cases will not test positive. I can only assume he meant by the swab test. The military would not do a blood test for herpes. It was not until this past October that I had an IgG test done. It showed I was positive for HSV2.

 

I'm not sure how accurate that 30% figure is. That was over 25 years ago now, he may have just been blowing smoke up my ass. If it is an accurate figure that could explain the negative results if in fact it is herpes your dealing with.

[WCSDancer2010]

Just as a FYI ...these are the symptoms of Behcets.... and this isn't the only thing that might mimic Herpes lesions ... you could have all or only a few of the symptoms:

 

Mouth. Painful mouth sores, that look similar to canker sores, are the most common sign of Behcet's disease. Sores begin as raised, round lesions in the mouth that quickly turn into painful ulcers. The sores heal usually in about one to three weeks, though they do recur.

 

Skin. Skin lesions may occur in people with Behcet's disease. Skin problems can vary. Some people may develop acne-like sores on their bodies. Others may develop red, raised and tender nodules on their skin, especially on the lower legs.

 

Genitals. People with Behcet's disease may develop sores on their genitals. The sores commonly occur on the scrotum or the vulva. Sores appear as red, ulcerated lesions. The genital sores are usually painful and may leave scars.

 

Eyes. Behcet's disease may cause inflammation in the eye — a condition called uveitis (u-vee-I-tis). In people with Behcet's disease, uveitis causes redness, pain and blurred vision in one or both eyes and may come and go. Inflammation that occurs in the blood vessels of the retina is a serious complication of the disorder.

 

Joints. Joint swelling and pain often affect the knees in people with Behcet's disease. The ankles, elbows or wrists also may be involved. Signs and symptoms may last one to three weeks and go away on their own.

 

Vascular system. Inflammation in veins and large arteries may occur in Behcet's disease, causing redness, pain and swelling in the arms or legs when a blood clot results. In fact, many of the signs and symptoms of Behcet's are believed to be caused by inflammation of the blood vessels (vasculitis). Inflammation in the large arteries can lead to complications, such as aneurysms and narrowing or blockage of the vessel.

 

Digestive system. Behcet's disease may cause a variety of signs and symptoms that affect the digestive system, including abdominal pain, diarrhea or bleeding.