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What type of doctor?

WhO TauGHt U 2 DaNCe

By WhO TauGHt U 2 DaNCe
in Herpes Treatment Zone

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WhO TauGHt U 2 DaNCe Honeycomb Member

WhO TauGHt U 2 DaNCe

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Hello everyone. I'm thinking of seeing a doctor for pain and weak feelings in my legs and loss of energy. I tested positive for HSV1 less then a year ago. When I first started feeling symptoms, I got sharp pains in my penis, weak legs, diarrhea and nausea. Maybe 4-5 months afterward the area @ my leg and my penis/testicles (somewhat near the joint) started hurting really bad. A type of pinching feeling, it spread down my right leg... it was really painful, was hard to sleep. It slowly went away, but my legs are still weak and i still feel nausea all the time. My right leg is constantly feeling warm and inflamed and feels sore all the time.

So pretty much I'm wondering what type of doctor to see. Of course I've got to see a physician to get a referral, but I'm nervous that I'm going to be prescribed Valtrex or some other basic herpes medication and pushed out the door. I asked a nurse/practician (unsure) when getting my blood test if herpes was just a skin virus. I was expecting her to say no, it also effects your immune system and resides in the nerves so it can effect more than... blah blah blah. She said YES, its just a skin virus. So I'm pretty much nervous that I'm going to get an uneducated or uncaring doctor that doesn't want to help me....

I live in Rhode Island and want to find a doctor who knows more about herpes than what he/she has read in books. Everyone posts that there are tons other symptoms than just breakouts online. Its OBVIOUSLY not just a skin disease. If anyone could provide me a good doctor's name that I can see in Rhode Island or advise on what to tell the doctor to voice my concerns, please let me know.

PS: Does anyone know if there are medications that can stop the SOURCE of the leg pain caused by herpes? Or nerve malfunctions/inflammation? I don't just want to null the pain, i want to treat it.

Please and thank you!! ^_^

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Tiny Established Member

Tiny

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I have had it 9 years and have dealt with a lot of Drs and only just found somebody who actually took me seriously (he had a cold sore on his lip--so clearly had some sympathy). He was just a specialist GP through the local sexual health clinic. Most doctors have been extremely dismissive and have given worse advice than the internet! The first dr I saw told it was cold sores and if I took valtrex and avoided sex when having an outbreak I couldn't transmit it. The attitude from the medical profession can be worse than useless!

The nurse I was first dealing with here when I got conflicting test results told me "oh, it must be HSV 2 because it is impossible to get recurrent HSV 1 on you genitals" which is ignorant really...and caused me months of anxiety. It turns out she was choosing to back the less reliable test in making that diagnosis. When I got frustrated and said are you sure your test is right I want to be retested it become apparent she hadn't bothered to listen to my history when I told her I got it from somebody with a cold sore. She then started making up all sorts of scenarios blaming my boyfriend for infecting me recently, telling me people could have HSV 2 on their lips, that this person who gave it to me probably had both...all sorts of nonsense to avoid retesting. I so understand your frustration.

I think in the US there is a specialised herpes clinic that I have seen mentioned quite a lot called Westover heights. It probably won't help you because its in Portland! But perhaps they may have information about good STD doctors in the rest of the US.

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Amalia Acknowledged Support Member

Amalia

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There is a clinic in Portland with a lady by the name of Terri Warren. I believe she will do phone consults that can be set up through the clinic. Google her name and you can read more about her clinc and her books on herpes.

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WhO TauGHt U 2 DaNCe Honeycomb Member

WhO TauGHt U 2 DaNCe

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I have had it 9 years and have dealt with a lot of Drs and only just found somebody who actually took me seriously (he had a cold sore on his lip--so clearly had some sympathy). He was just a specialist GP through the local sexual health clinic. Most doctors have been extremely dismissive and have given worse advice than the internet! The first dr I saw told it was cold sores and if I took valtrex and avoided sex when having an outbreak I couldn't transmit it. The attitude from the medical profession can be worse than useless!

The nurse I was first dealing with here when I got conflicting test results told me "oh, it must be HSV 2 because it is impossible to get recurrent HSV 1 on you genitals" which is ignorant really...and caused me months of anxiety. It turns out she was choosing to back the less reliable test in making that diagnosis. When I got frustrated and said are you sure your test is right I want to be retested it become apparent she hadn't bothered to listen to my history when I told her I got it from somebody with a cold sore. She then started making up all sorts of scenarios blaming my boyfriend for infecting me recently, telling me people could have HSV 2 on their lips, that this person who gave it to me probably had both...all sorts of nonsense to avoid retesting. I so understand your frustration.

I think in the US there is a specialised herpes clinic that I have seen mentioned quite a lot called Westover heights. It probably won't help you because its in Portland! But perhaps they may have information about good STD doctors in the rest of the US.

Thanks for the story. I can relate. I'm a very picky person, but it's with reason and this type of thing can't be given any less thought you know? I've been cutting myself out of professional help, but i work in a coorporate setting and a lot of "higher ups" don't really care, they just follow "protocol" even if it won't help the people we are getting paid to help. Its just in-human.

WestOver Heights huh?... Its kind of far, but i'll look into it. Thanks so much :)

There is a clinic in Portland with a lady by the name of Terri Warren. I believe she will do phone consults that can be set up through the clinic. Google her name and you can read more about her clinic and her books on herpes.

Hm... as mentioned in VTiny's post... I wish i were in Oregon lol. I'll research it and update later on in this thread. Again, THANK YOU BOTH :)

***UPDATE: I checked it out via Google. Their website is so warm and welcoming, almost brought me to tears. The closest clinic listed on their site doesn't look very promising. Seems to be just a place to get tested, so I'm going to call the clinic phone# provided on the Westover Heights main page and see if I can get some direction from there. Very helpful information, I really appreciate it.

<3

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    • sgt98
      What is the usual order of events in initial infection for GHSV?

      By sgt98 · Posted

      Hey @WilsoInAus ok thank you, I will do my best to move on and stop trawling forums haha. 
    • WilsoInAus
      What is the usual order of events in initial infection for GHSV?

      By WilsoInAus · Posted

      Hey @sgt98 but there is no feasible infection or outbreak to suppress and antivirals do not suppress an initial outbreak in any event 
    • sgt98
      What is the usual order of events in initial infection for GHSV?

      By sgt98 · Posted

      Thanks @WilsoInAus I understand apologies for this but the only other thing I am worried about is that I did take a course of Famvir on day 1 as I felt like I was having an outbreak of cold sores and am worried that has suppressed the initial outbreak genitally 
    • WilsoInAus
      What is the usual order of events in initial infection for GHSV?

      By WilsoInAus · Posted

      Hi @sgt98 it is not feasible to obtain a HSV-2 infection from receiving oral sex - only HSV-1 is feasible but you've already got that and immunity from any further infection with HSV-1. You do not need any further tests for HSV. You're feeling regret, try to forgive yourself and calm down, let the rational take over. You know the answer here and it won't be long until you believe it too.
    • WilsoInAus
      Looking for some insight on an atypical experience.

      By WilsoInAus · Posted

      Hi @NerdP423 and welcome to the website. You raise a lot of points and I think the best way to address your concerns is add some comments at each key point. I've copied your note again below and added these comments in square brackets. I appreciate any insight (even speculation) as to what has been going on with me. I'm a 37y/o M. I last was intimate with a new partner on 2/11/2022, and a few days later started having a huge amount of discomfort in my face. [The first thing that happens though is that herpes causes lesions or at least some skin based disruption. Other symptoms are then related to the actions of the immune system responding to the virus. Without lesions, it is highly questionable that the ailment is related to herpes, yet testing is useful if you have concerns as you have done so.] About a month after that [herpes causes issues within days, if the first 'symptoms' are a month later - its extremely unlikely they are related to herpes], significant discomfort downstairs, however every test I have ever taken for HSV 1 and 2 has been negative. Here are the details: Face: Previously, some significant tingling and itching on the right side of my mouth, lips and chin (still there, but milder) [herpes does not cause general tingling and itching, it can cause a reasonably concentrated feeling of itch/throb from which a herpes lesion appears within hours]. Occasional hot flashes near my right eye, cheek and ear [herpes does not do this, it may be a immune response to something, or stress]. Sometimes it will feel like the skin is crawling on the right side of my face [herpes does not cause a general crawling sensation]. Never seen anything that looked like a traditional cold sore [that's extremely telling, even people with associated atypical symptoms will have experienced herpes lesions]. Occasionally, the left side of my face will have a momentary feeling of skin crawling, but it's so mild that I am not really worried about it. Downstairs: Thankfully, most of these are now milder than they were before. Occasional momentary pinch of pain at the base of my genitals. [herpes does not cause a general pinch feeling.] Aching pain in my boxer area (groin, leg folds) [nor this] Occasional feeling of cold in my boxer area, butt, or lower back. ( also in my shins and occasionally even my arms) [nor this] On 4/30/2022, I had been in discomfort for almost two months. I scratched an itch, noticed it hurt, and then checked - I did have an open ulcer down there. Took myself to the ER to get swabbed, came back negative. [If this was a PCR then this will be very conclusive.] Practitioner said it may come back negative because it was already open. However the lab report noted that it definitely didn't look like what you'd expect a typical first herpes outbreak to look like [how would the lab know??]. All blood tests negative so far. I had two western blots, the second one was nine months after exposure. [Two negative Westernblots!!! Many that's real convincing]. All other swabs also negative. I went to urgent care, because I know the timeliness of when the Swab is taken matters. One time, a swab was not done, because practitioner said it was folliculitis and wouldn't swab it (It was at my belt line). [Belt line is highly unlikely to relate to herpes.]   A blood test revealed I had low-ish B12 (technically in range, but at the very low end, especially for a man of my size). I had a series of B12 injections, and I am taking a B12 supplement. I am not taking any lysine or arginine at the moment. I was taking the Arganine to see if I could induce an outbreak. [This is irrelevant, there is no known linkage between herpes outbreaks and arginine/lysine intake - its a myth - and B12 infers nothing.] I think what I am asking is - has anyone here ever repeatedly tested negative over and over again over long period of time, before getting a definitive answer, be a positive test, or something else? [The answer to this is: Extremely few people with a HSV-1 infection and even more rarely HSV-2 test repeatedly negative on Westernblot and actually carry the virus. Of the cases that I know of that had delayed detection by a swab and negative blood tests in the meantime (and that's only 3-4 cases), they had some form of lesions within days of infection but did not obtain a swab for various reasons and then obtained a positive swab of a subsequent lesion with the record being 11 months later. A couple of the cases did have some 'background' symptoms they thought might be related to herpes but that isn't ascertained and some did not have any unusual symptoms at all apart from the lesions. Hence as you did not have lesions around your mouth or lips within days of the last sexual encounter as is exceptionally common for a primary oral HSV-1 infection, that pretty much rules out herpes orally as it is. The fact that you had no genital symptoms for a month also rules out genital herpes. I am not aware of anyone at all who has genuinely gone on to test positive by swab or blood in your specific circumstances. There are hundreds if not more than a thousand experiences on this website alone that are similar to yours that are truly negative for herpes I'm one of them!]  
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