Jump to content
World's Largest Herpes Support Group
Sign in to follow this  
jimmyDS

Wrong diagnosis for ~6 years

Recommended Posts

jimmyDS

I contracted this virus quite young, a few weeks before I turned 17. I had only had sex once, but then a few months later I was messing around with a girl that I didn't know at all (didn't have sex, just playing around, mouth to genitals and genitals to genitals, no penetration though), and I ended up contracting this from her.

My first OB had a big fluid filled lesion on the underside of my penis, and a few others (one on the tip of my penis), but they went away fairly quickly and I just said to myself great, now I have a STD... I was a senior in HS and didn't really have the means to go to the doctor without breaking the news to my parents, so I avoided it. It sucked being a senior in HS carrying this around, but what else was I to do?

Later, come spring time, I had my second outbreak, and this one was more like the typical first outbreaks you hear about. I was sick, my genitals were very sore, it was so noticeable I ended up going to the ER under the guise of a possible testicular torsion as to not tip my family off. Well low and behold, they diagnose me with genital warts (I have absolutely no idea why), and I naturally believe it. I never actually got tested for anything, just a visual diagnosis. I've been treating this like HPV for a long time, I even was using Aldara that I had previously for some warts on my foot. I think it was just aggravating the situation even worse =b

I usually get sores on my thighs, but they never burst. They are always like pimples that will end up being painful to the touch for a day or two, then they slowly go away and don't hurt anymore. Then occasionally will get them in the pubic hair area, again like pimples, but these ones usually go away faster than the ones on my thighs. My penis also has some wrinkles on it when flaccid that weren't as noticeable before. I hardly see herpes looking like this on online pictures, the stuff you find online is outright frightening, so why should I doubt the HPV diagnosis?

A few weeks ago I got a flat sore on the shaft of my penis, and I thought, this looks and sounds exactly like HSV. And you know what, genital wart diagnosis never made any sense to begin with, and the treatments never helped at all! All of a sudden everything started to make sense, and in fact I was not living with the oddest cast of HPV, rather a very typical case of HSV.

So what's so nice about this? I finally have a clear path of treatment (going natural, for now...), and I now have a clear understanding of what I'm dealing with. No longer am I stuck thinking I have one thing yet the literature is bringing me absolutely no closure on my condition. Best part, these forums and this website have rapidly started to build my self confidence back up, and I'm already starting to look at women again and say "hey, maybe I shouldn't just avoid women as a practice, maybe she'll understand down the road and there is a possibility I don't have to live my life alone anymore"

I haven't gotten an official test from a doc yet, I'm sure I'll do that soon enough. Maybe when my next OB is fresh I'll head up to the local clinic and finally get a proper diagnosis. For now though, I'm back in college and working on my degree, another thing I never thought I'd do :twisted:

Share this post


Link to post
Share on other sites
gotitsowhat

Glad to know you are coping well

and that you've pulled it together enough to continue your education.

However, you should get a blood test so that you can get an official diagnosis, know what type you have and to clarify things in general. Most colleges have student health clinics and people in them who understand a lot about herpes and are sympathetic. A blood test will help you know which type you have which may impact possible treatment and prognosis.

You should know that you are certainly not alone in a delayed or wrong diagnosis; doctors absolutely HATE to diagnose herpes and will go to great lengths to avoid it. I had to see SIX different doctors to confirm my own personal diagnosis. The doctor who finally did the test (the others refused, saying I did not need the test since it was clear it was not herpes) said he had been told my his colleagues at Kaiser that doctors won't diagnose people with herpes if they can help it because they know what it does to the patient's self-image, confidence and life. And also because they can get involved in law suits over it. So they avoid the diagnosis as much as they can. Since it is not a fatal virus, they assume it really doesn't matter much if you know about it or not. I think they are wrong but that's my own take on it. I think that it only causes more confusion and worry and, as in your case, works out much better when the truth is known.

Share this post


Link to post
Share on other sites
NeedToKnow

Don't be afraid to go to the health center at your college. You should get tested for other STDs also since some of them don't have symptoms. They usually will test for HIV and the bacterial STDs for free and the herpes blood test may cost a few bucks. It was about $25 for me at a school health center. Just go in informed and insist on a type specific IgG blood test for Herpes. Say you want to be tested for both type 1 and type 2. The brand name of the usual test is Herpeselect.

Share this post


Link to post
Share on other sites
jimmyDS

I looked into it, my college doesn't offer anything, but they do link to the county's testing facilities. I gave em a call but they are closed until Monday, I'm planning on calling when they open on Monday and hopefully going there as well to get tested.

Herpeselect is the gold standard for type specific? I'll ask if they have it when I give them a call.

Share this post


Link to post
Share on other sites
NeedToKnow
Herpeselect is the gold standard for type specific? I'll ask if they have it when I give them a call.

Western Blot is the gold standard but that is usually not used because it takes a long time to get the results and it's expensive. HerpeSelect is almost as good but is a lot cheaper. Here is a link to a quick reference guide for some herpes tests. You can print it and take it with you and ask the doctor about it.

http://www.ashastd.org/pdfs/blood_test.pdf

Share this post


Link to post
Share on other sites
jimmyDS

Thanks for that link NeedToKnow, it helped lots.

I called the clinic today and they wanted $25 for the STD tests and another $74 for the herpes test. However, they said the blood test basically means nothing, and the only test that means anything is the swab test. I asked them if they had any of the type specific blood tests and the nurse said no, blood tests are worthless for herpes and cant differentiate what type one has. I told her they should look into the HerpeSelect test, and it could tell the difference, then she said "I believe you", and that was the end of that conversation.

I ended up using tSTD.org , bought the herpes test and got my blood drawn within 90 minutes of ordering from their website. The actual time I was in the lab office was about 5 minutes. Sooo much easier than a doc's office, and costs about exactly the same too, except I get the proper tests done. I wasn't looking forward to a day at the doc's but this is sooo much easier I'm amazed.

Now I get to wait, the tSTD lady said it should be in by Wednesday, if not Friday or Saturday (because of xmas holiday). Not that I'll be shocked when it comes in positive, but it'll be nice to finally have this all officially confirmed and behind me.

Share this post


Link to post
Share on other sites
NeedToKnow

Thanks for the link to tSTD.org. It may be cheaper to go to a regular doctor, but it seems like it's worth it to not have to go through the hassle of trying to explain why you want the test and getting talked out of it.

And I guess the reason they say the blood test is not entirely useful is because people can get false negatives because they haven't produced enough antibodies yet (recent infection), or if you have HSV-1 already, then a new HSV-2 infection may give a false negative. And also it doesn't tell the area where you are infected, and it's not entirely clear how infectious you are even if you are positive.

But if you are positive, then at least you can tell any partner all the facts and let them decide.

Best wishes

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

Advertisement

Try a Lysine supplement for cold sores

  • The Hive is Thriving!

    • Total Topics
      68,808
    • Total Posts
      460,112
  • Posts

    • cowpoke02
      looking at it wrong /  god creator is life philosophy ..  for free people and society community ..  remember the pharaohs .  more escaping freedom and never becoming a slave.  holy spirit is man speaking the truth . warning of history of slavery  and teaching the truth and permanent laws of life . legal book and right and wrong .   any way  universe is god / creators .  not supposed to have a image of god as well or this anti christ ..  people speaking for god is anti christ ..   read philosophy you under stand your self and others .  main ones are good start .  roman empire ones .  on sex food  life // bible opens up after that ..  bibles also has holy spirrit from lying man phsyco people in it . haha.  man corrupts everything ..  god says take action , take care f your self .   forgive your self /// health depends on it . forgive the enemy or people hurting you . they mental ill bad people or stupid or ignorant or accindet .  forgive for you ..  people make mistakes ..        religon is natural law really .zodioack .. i like to mix natural regions with bible . bible is great for many things and courts and freedom . most is life rules for success to live jn heaven not in hell .  shit happens .. your born free and equal with god given rights is what i take from religion ..  fallow god cause you wont end up abused used or a slave to a man . mans law is temporary and slavery for a few to profit ..  god can be you ..  when die your still around .  you can watch family and friends . parents re god and earth sun and universe ..  fathers land or mothers is the earth .  indians philosophy you can't own your creator .  modern law before corrupted . people created government  . government can't own the people . today they do . get disease and torture . lol. bad drugs by doctors .  any way idea of staying safe . em commandment s don't hurt people.  court rules ..   so take charge . god helps them who help themselves . lol.   your still a good girl . got more morals than most people.   smile .  commonsense first . the philosophy and religion .. then you indoor stndit more ..  everything corrupt by people . even church and religion . some people are born manipulators , they have brain defects . cause trouble  and want to be pharaohs .. religious tyrants to government .   i chosen to serve my creator now . join world lords army of al regions to live in peace to end government ...  serve god or serve a man .  i'll serve god before a flag controlled by a man .  symbols images become god . then government and man becomes god . not good ..  free people ..  take care . you can be religious but remember man is a bastard ..  power .  think for you self  like god / creator intended .  false profits man  all every where .     
    • raregem
      Well my post never inferred what you just suggested. I said I would respond to all enquiries as best as I can right here for those who cannot send emails yet or better yet, they can email and I would get back to them as soon as I can
    • WilsoInAus
      @MikeIke you won’t be normal until you believe you will be.
    • MikeIke
      Having second thoughts on letting it go. Daily it has been : Mouth : redness around lips, lots of breakouts around lips, white skin crusting around lips Penile : Meatitis, redness, urethritis, glans sensitivity, dysuria, shooting pain from urethra, white peeling skin sometimes New: fatigue, random skin depigmentation, pain spreading into butt as nerve pain Girl i was with mentioned "the hsv blood tests are so inaccurate" - - how would she know this? Planning on asking once I know she won't lie.  Next step is meeting with a new urologist. Retesting igg today 14 weeks.  11 week igg and hiv was neg. 12 week igm was neg but may have waited too long.  I just want to be normal again. 
    • cowpoke02
      forgive heals your self .  plus crazy people love you to suffer and not be happy . being happy ruins them not you . the goal is to make you go to hell .  happy you shall be .. keep you healthy and less out breaks .  stress kills immune system and feed the disease and diseases ..   ptsd and insanity is fed by stress. cure is to forgive yourself for getting used or played and enemy . both in a bad spot or they mentally ill with no empathy feeding off hurting people.  so stay happy ... life traps people play you or whole life even parents siblings .. first one to kill ya rob in end is family . you get other ones inheritance .. many people have no empathy and driven to hurt people . mind defects .. you get beat down your nervous system goes to hell you end up with insanity and psychosis ..  delt with it .  learned a lot but now nervous system is gone . damaged for life . never trust people. i have to move away to get better . sell everything off and get robbed .  so don't get trapped stay healthy . forgive the idiot . maybe he got it out in society as well.  maybe he knew or messed around .. forgive for your self .. not for the idiot .  maybe both victims .    enough rambling . trust your gut even if its wrong its right . lol .  true the other cheek is a good rule and get evidence and keep watch . bad people who would kill you in right chance they set you up and play you from the beginning  . they be friends with every one else and undermine your life ..  so smile and get out and secret vice things and security ..  you flip out they say our crazy with straight face . you hang your self basically . many times media does it too they hang you out to community then they may beat you as well.  why be happy turn cheek . plus they can be your helper on inside .  good to not even let em know your stressed they feed off it.  any way that covers the whole spectrum of why you forgive and forget and in the end it points at the bad guy ..  they smart they break you down over time with mind games and emotional damage .  one day figure it out and yu snap . you become the bad guy they look clean .  you muddy up the picture and more facts against you than them . in court they can have people against you witness than for you .  evil set up / they trick you into evidence against you while they covertly did stuff to you maybe for years .. had siblings recently lie in your face and in front of people and act normal . then see em go bye net day smirking and grinning.  they know mommy is retarded and loves all kids even  if they rib and play her ..  evil people.  disturbed me deeply .  they can pass lie detectors lie to alll .  bring up when you snapped after lifetime of abuse vandalism threats ..  evil as hell . good luck ..  thats why forgive forget gather evidence . don't buy the farm till you find out not moving into crime ring or mad man neighbor . lol. i still can't believe it . half alive at this point ..  nervous system goes your in torture and financial distress and lose entire life .  they drive buy make sure you know they watching you .  make sure see hear them . to keep destabilizing you ..  this can be family special if they have narc dna like mine.  i am not a narc so they all got me at bottom and play me for fun .. once i leave they have to bet on each other ..  they all ready one .. evilest crazy people on earth protected by the law and usually have connections and other crazy people .  be good have fun be safe .  
×

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.