this story is long, I apologize,but I must be detailed :)

[JustATadConfused]

So, I actually posted my story in 2009 about my whole experience and I got some feedback but i can't find the post or remember what my username was PLUS NOW I'm kinda back to square ONE. Hopefully someone can tell me what to do or think lol. not sure it's question....more like an angry rant lol.

SO I am 21 yrs old(female) and sometime in late 2003 or early 2004, I started getting these somewhat painful sores in my genital area. I had not been sexually active at all. I was about 14 and my parents would have killed me lol. So anyway I got scared about it because everything I read said I had an STD and I couldn't figure out HOW that was possible so I thought at the time whatever it was would go away. Fast Forward to 2007. I still hadn't been to a doctor. It so happened that year that I got braces the ceramic kind and they would cut me so bad and then all of a sudden my entire mouth would be inflamed. But I didn't tell my orthodontist. I just refrained from going when I was in a really bad state. Then one day I had this really awful experience with genital sores and it was so bad I had to go to the doctor or else  I would go nuts.She examined me and said, 'these look like herpes.' And she sent me to do a herpes test. It was an IgM. I don't have the results with me so I can't tell you the particulars. But I was sure it would be negative. BUT it came back positive. At the time she told me I was positive for HSV2 and it was a recent infection. Now at the time I thought, this makes ZERO sense.I had had these sores for FOUR YEARS by that time. She asked me if I'd had sex, I said NO. At the time she had not seen what was going on in my mouth and I didn't think they were connected because they only started when I got the braces and it wasn't really sores it was more like mucus and inflammation. Fast Forward a year to 2008, I'd accepted I had herpes, but the situation in my mouth was getting worse.It went from just getting cut and inflamed to having sores on my tongue, lips, and in recent times I get a sore in my throat. I started skipping my orthododntis appointments until one day I had to go in. She said go see your doctor immediately, there's something wrong with you internally. She said I should go do a blood test for deficiencies. I went to my doctor and she said you look anemic, which I'm sure I was because I wasn't eating, I had lost about 30 lbs, and I was losing a lot of blood. For some reason it came back NORMAL. And I knew it couldn't be right, but I accepted it because deep down I just didn't want there to be another problem. She told me that what was going on in my mouth was HSV1 (all of a sudden I have that too!) and she insisted she had told me that previously (which I know is a lie because then I wasn't having any problems with my mouth and she asked me if I had had sex, which really doesn't matter in cases of having oral herpes! Why didn't she just say I had HSV2 in both places?) The FIRST time I saw her she was almost insisting that I must have had sex or had someone perform oral sex on me, because it was the only way for me to have gotten it. The SECOND time she says I must have reinfected myself (from mouth to genitalia) which I don;t think makes sense because I had the genital symptoms for FOUR years by that time. And even if that were so how does that mean I have HSV1 and 2? why not one type in both places. It all just seemed to far out for someone with NO sexual activity. I am pretty confused as to how she arrived to this conclusion when IgM tests from what I've read are not type specific. Hmmmmm.

On top of that I developed ACID REFLUX and got checked into the hospital because I had a painful allergic dystonic reaction to prescription acid reflux medication. I tried to tell the doctors I was allergic but they said it wasn't possible and I should keep taking it. It's a good thing I didn't because I could have neurologically damaged myself. GRANTED....it is a rare allergy BUT HELLO!!! GOOGLE IT!!! That's what I did! ANYWAY....By that time I didn't want to SEE anymore doctors. Then came the worst episode I had in my mouth ever. My tongue got swollen/inflamed, I was biting them til raw on the sides (just something I've done my entire life), i had a sore in my throat, sores on my cheeks, sores on my tongue and my lips were just bloody and swollen and Idk how to really explain it. My stomach was bloated for about a week. I saw my orthodontist who removed the braces because she couldn't bear to see me suffer anymore.She said I don't care what your doctor said to you 'this is not herpes, I see it everyday, even if you have herpes THIS is not because of it.' And I trust her because she allowed me to get out of our 3 year contract even though she would be losing money. I was leaving the country to go abroad to study (North America) and she said 'find a good doctor and figure it out. something is REALLY REALLY wrong.'

So i took her advice, I found a renowned doctor (lucky me), in Montreal, a dermatologist, to help me. Told him the story. We did a blood test. Found out I was anemic. I had iron deficiency anemia AND vit B12 anemia. My iron was  7. However I still did not feel this was necessarily the main problem. He did  a culture, it came back negative. Now you have to understand that I am very doubtful of either positive or negative results. I was living my life for 2 years thinking herpes was my issue and now I have ppl telling me it isn't. It is difficult to let go of after taking that long to accept it. I simply do not know what to think anymore. I asked him to do a blood test. He refused. He didn't think it was necessary. He said my doctor shouldn't have done the IgM and it was probably a false positive.But I am not totally convinced he had taken a proper culture 'sample' or whatever for the culture in the first place. So I plan to do another one. He did a biopsy, before I moved elsewhere and couldn't see him anymore and I didn't get the result until February of this year when I had my files sent over to my school's doctor and she referred me to another dermatologist close by. The biopsy came back not showing anything, but I know the sample he took for that were not of my regular symptoms. It might have just been a regular canker sore I had in my mouth.

Anyway I spent about a half-hour arguing with this new dermatologist about false positives, which she would'nt admit could happen until i mentioned it.  I told her I don't give **** what you know (well i didn't say it like that but she got the point lol). I said I KNOW the IgM is a faulty test and I want another one preferrably an IgG and I want it type specific. If other doctors are doubting then I am doubting too.  I told her I respect you but quite frankly I had one doctor say, I may have herpes but that's not THE problem, one said I've never heard of a herpes blood test (imagine that! then what the hell did I do? smh), one said that I don't have herpes at all, and now you're telling me I for sure have herpes if I took an IgM and it was positive when I know different! If ten different doctors say ten different things then most of you must be talking out your ***** or maybe you JUST DO NOT CARE about me. To make a long story short, 3weeks later I got a call from her office....it was NEGATIVE.....the funny thing is the entire time I kept thinking, I'll be relieved if it comes back negative, but in reality, I'm just MORE confused. Also I am not sure if she requested an IgM or an IgG. I think it was an IgG though. I'll be calling tomorrow to find out the specifics.

[gracefromHHP]

you don't have herpes. you started with all these issues prior to being sexually active and it's impossible that you contracted herpes both orally and genitally without sexual contact.

bechets makes a lot of sense as does gluten allergies too.  continuing to follow up with the dermatologist at this point is the best course of action.  

grace

[JustATadConfused]

Now, I have had TWO doctors mention BEHCET's......which is what I've been thinking is really my problem since I was diagnosed with herpes. There is supposed to be some kind of correlation between the two, I think. I've developed nosebleeds, which would go on for about 3/4 of the year. I've had sores UNDER my feet. And just this month I had two sores on the palm of my hand. I think it makes sense why I am so prone to being anemic, why I have stomach pains and have to leave my classes or rush through my exams and also my acid reflux. And it would explain the mouth and genital sores. I also have muscle pains when I'm lying down and my skin in certain parts of my body is numb sometimes. It would also explain why my sores resemble herpes. I am only 21 and I know behcet's tends to develop around 20-30.I'm just worried that if it is Behcet's I'm going to have to wait until something really bad happens before a doctor REALLY considers it.
I know that if I want to get a diagnosis I need to see one doctor consistently, but the Canadian healthcare system is not exactly working in my favoutos but photographs are not that helpful I feel.  And when I tried to book a follow-up I found out she's on maternity leave. Now I don't know what to do. I am going back to my home country for May-August and I cannot rely on those doctors to help me. I am going to try to get an appointment before I go back home, but it's probably unlikely. Even if I get one, I'm dreading it because I feel like I'm going to end up butting heads with another doctor, re-explaining myself, probably re-testing. Then I'll be back to square one either with positive herpes test that doesn't make sense or explain anything else OR a negative one that leaves my diagnosis a mystery. Then I'll go home for 4 months. Come back for another school year where I'm sick and it disrupts my school attendance, performance and social life. And because I have no diagnosis it's a struggle to even get a doctor's note to excuse me from an exam or for the number of classes I miss. r. I waited 2 months to get to see this dermatologist and when I arrived I had no symptoms to show. I've been taking pho
I hope I don't sound hateful toward doctors. I've met a few who who have been super patient and understanding and WANT to find the truth, like my first dermatologist and the GP who organized the referral  for me and NOT AMAZINGLY i never once mentioned Behcet's to them but THEY brought it up. They LISTENED to my concerns. But the majority of doctors I meet annoy me because they won't admit when something does not make sense, or that they may not know about rare allergic reactions,  or think you are lying, or they withhold information such as false positives because in a reality, they really just don't care about you or the truth. It's so much easier for them to just say HERE u have herpes, get over it. And I know this because the first doctor who diagnosed me when she heard about my mission to find the truth (whether it be herpes or something else) said to my father, that i should 'just accept it cuz it's not that big a deal. lot's of ppl have herpes.' Well I think that that is a pathetic reason to accept a diagnosis wrong OR right, especially when you could have a potentially fatal illness lurking beneath. You should only accept a diagnosis because it makes sense and is beyond doubt, right....not because 'well it doesn't matter either way, it's not that bad if i do have it.' If you do not do your own research and quickly develop a persistent, no-******** attitude, they will feed you a whole bunch of medical jargon and you will accept it because well......it's science so it's must be fool-proof. yeah right.