I am truly convinced that I have herpes and I will explain why....
I had been inactive for a couple of months then got a new partner almost 2 years ago. Within approximately 2 months I started having these crazy flare-ups and intense symptoms. First time; 3 months of intense pelvic pain, back aches, constant itching burning tingling in genitals, shooting pain down buttocks, legs with neuralgia type symptoms - sunburn and icy hot feeling in the skin.
Not sure how long after the symptoms subsided I ended up with a massive genital ulcer. Anyhow over the course of these long almost drawn out 2 years I have had constant flare-ups sometimes its just itchy genitals, sometimes just burning, sometimes it feels like shooting pain in my lymph nodes.
I waited over 13 months to take a blood test and I have taken 2 over the span of the last month or so. All the testing from blood work to swabs have come back negative, all done within the last 3 months. Doctors are convinced it is not herpes. Well then what on earth could it be?
Due to these forums about autoimmune diseases I started looking at my medical history;
- 15 years ago I had a kidney disease that was caught due to high amounts of protein in my urine, I dealt with that for a few years and it magically went away
- joint pain and most specifically knee pain that has lasted years on and off but got worse in the last 3 years, it sometimes swells really bad
- for the last 3 years I have had constant and unexplained pelvic pain ( suspected endometriosis but no evidence)
- 4 years ago I had a weird episode of neuralgia, it lasted approximately 4 months - pins and needles all over my body, icy hot sensations on my skin with itching that drove me insane from scalp to toes. I was told it was anxiety and stress.
- I often have ulcers inside my cheeks, never thought anything of it
- also sometime 4 years ago maybe 5 I had an intense pain in my left eye for a couple of months, with horrible dryness and itching, I had to take drops and wash my eyes with some type of solution for months and could not wear contacts the discomfort was so bad
- between the last 6 years I have had 4 periods of chronic gastritis, had to have endoscopy done twice, all they found was severe inflammation of oesophagus and stomach lining, intense burning sensation
- between those same 6 years I have had several flare ups of chronic diarrhea as well, unexplained no diagnosis. Literally I have had weeks where everything I put in my mouth ends up giving me diarhhea, sometimes its just been random over a few months then suddenly went away
for the last 3 months, its been constant genital itch, pins and needles, sometimes raw burning sensation, lower back pain, cramping, hot/cold sensations down my spine sometimes my upper body extremeties but mostly my buttocks and legs. I have had days where the whole body wont stop itching and burning. Constant feeling of tingling and burning in my lips, tongue and mouth as if I am about to have cold sores but nothing. Sometimes I have painful ulcers but they only last a few days. I have had ulcers that covered my entire clitorus, painful! I have had those same sensations on my face, tingling burning skin, hot sensations, itchy, bright red spots and bumps that appear.... I figured its an outbreak too. On my buttocks I have discovered those same looking things, bright red spots, sometimes it looks like a rash back there ...every once in a while itchy bumps that appear on my thighs and inner thighs....
My whole body hurts and I have nerve pain in my shoulders, lymph nodes armpit and groin is what it seems like. Chronic headaches.
I have talked to plenty people with herpes on forums and such and none of them seem to think this is herpes. However, I looked up pudendal neuralgia and it is often connected to the herpes virus attacking the nerves. Also, I keep hearing about false negatives so how on earth do I know for sure that these tests are accurate.
Also my mother has MS and psoriasis .....
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BElgium8
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Herpes tests are accurate. Ulcers and herpes look nothing alike. Herpes comes in groups of four. That is the virus' nature. Four bumps filled with clear fluid. I too have had ulcers swabbed and one genital ulcer cut out and it came back negative for herpes (I was relieved and knew it the whole time). With this whole new partner business, you could literally be reacting to him. Your immune system sounds so shot, that burning and itching and bumps and tingling you feel sounds like yeast/ thrush over load. At least how you described it, is how my mouth and parts of my body felt. I was on fluconazole for months. Dietary changes, specifically coconut and probiotics got my body in check.
Seek a second opinion. Maybe colcrys is not the best option for you right now because you are hard up in a flare.
Have your partner get tested for herpes. The antibodies will be there six months after infection.
Sounds like you are desperate for a solid answer but unfortunately, it all sounds like behcets and sjogrens.
Go completely sugar free. Start starving the yeast. With the gastritis and colon inflammation- this all sounds like yeast and poor gut flora.
also to put out- I still am completely sugar free. if I eat even a bite ful of something that has sugar in it, I will have diarrhea for hours upon bloating and horrible feelings. one. bite. I don't think you realize how much sugar is in everything and how inflammatory it is. I never feel awful anymore unless I accidentally consumed it, which is rare.
Give this a try- meats. fats. veggies. watch the potatoes and carrots.
I'm going to cut out sugar starting today and see how I feel ... that's necessary regardless I'm sure. Thanks for the advice ... I'll let yall know what I find out next
i felt a huge difference within days. read the labels! no processed foods- make it simple. You may feel worse very initially depending on how your diet was and yeast die off. give it at least 2 weeks!
I'm gonna get probiotics I used to b a clean eater and completely fell off now that I think about my diet it dies coincide with when things got worse ... I also was stressed not sleeping not eating right and enough .... I'm craving sugar all the time now so yeast thrush is definitely a part of the problem. have u been diagnosed with behcets and anything else?
So u can relate to my symptoms too then? ... yeah I'm reading up on thrush now. I have been craving nothing but sugar lately that's an indication too isn't it. I did see a few other posts about people with constant thrush infections who also had behcets and other autoimmune diseases. I'm ordering those probiotics... how did you figure out it was thrush?
The burning and tingling feels like neuralgia though but could be some type of fungus indeed. Yeah its been well over 6 months just wondering coz I've seen so many posts about false negatives. I'm gonna be seen again by someone else then get a referral ... yes joint pain as well... can very well be BD and an other autoimmune disease. I'm sending my partner to get tested as well ... last resort there ...
if you were tested for herpes during an "active break out" and it came back negative, the chances are truly slim with a blood test. you had mentioned a culture was taken, both if both are negative multiple times weeks and months again...
Article that breaks down false positives and negatives really well. Blood tests is where its at. Regardless if virus is dormant, a person will have antibodies.
I'm just seeing this comment ... yes so my symptoms have been active for well over a year. The swab was done on open ulcer a fresh one within 24 hours. Both blood tests also taken while symptomatic. The last clue as far as that is concerned would be to get him tested and yes both of my blood tests were type specific igg. Good reads thanks.
where on earth did you get the idea that herpes comes in groups of four bumps ? that is ridiculous and completely wrong. herpes usually come in groups but it could be any number
I agree that it sounds like a terrible yeast infection. That can often happen with a new partner. But you would think that he would also be having some symptoms if it is yeast. Anyway, I agree cutting out sugar and doing probiotics would help. But you need to get a prescription, also. There is a pill you can take that will act quickly if it is yeast. It actually doesn't sound like Behcet's to me, but of course there are so many variations of Behcet's that who knows? I don't envy you because this sounds like the beginning of a long medical journey.
im replying here- i cant stand how little the little box gets.
Yes- very similar symptoms. I wonder if what i thought was hypersensitivity to pain is what youre calling neuralgia pain... but I always had meningitis with flares.
Yes i craved sweets during thrush... my mouth was itchy and burny at the same time. My tongue was a constant thick white... think like drinking milk and then it stays on the tongue?
My thrush got so bad that one time I ate a sausage sandwhich (spicy) and my mouth started to just ooze blood from the cheeks. It was so irritated. FLuconazole helped, but I think I was just so sick and immunocompromised that until I changed my diet and did probiotics- I just didnt stand a chance.
i would swish with coconut oil, eat coconut oil foods. Gentian Violet cleared it up for me, but gave me esophageal ulcers in the process.... win some lose some.
Hydrogen peroxide and whitening agents are a HUGE source of thrush for me. Use whitening strips or whatever once, BOOM, white mouth that is itchy.
That sounds awful ... I haven't started crying from pain yet lol maybe frustration though. My mouth does the same thing but on and off tongue is rather white ulcers and white spots come and go, itching and burning too. But nothing is constant just seems to go from one body part to the next and so forth.
I did try coconut oil down there I can't really tell a difference yet.
I suspect Behcet's Syndrome/Disease. Behcet's can be a true nightmare if you are unaware of all that 'can' occur to your body. Specifically I worry about your eyes. Please see a eye specialist right away!
I saw another individual in a previous post give you a link that is extremely informative about Behcet's, and I encourage you to stay strong and do all the research you can. It is not a well known disease in my country, so between my mother and I, we are trying our best to aid my gp & rheumatologist in dealing with ongoing symptoms.
I hope you feel up to the challenge that comes alongside of being diagnosed with a rare disease. Rest as much as you can and try to be as calm as possible, as Behcet's is aggravated by stress. Meaning, big flares occur when under any type of stress.
My thoughts are with you, and I hope you have an excellent gp to help you through this process.
What symptoms were u having? These sores on my butt and legs now new ones appear daily I go from a bunch here and there to a new bunch. That's really why I'm thinking herpes on top of the vaginal issues and ulcers.
Everyone's are different. Mine were vaginal and mouth ulcers some had pus and the doctors at first thought herpes. Were very sore and itchy. I could not eat or pee. I have so many tests and all were negative. My GP was useless and was going to send me for a painful procedure. I was saved by the Bechets society who diagnosed me over the phone and then gave details of specialists to see.
Yeah my gp is extremely useless too. I am ordering the western blot blood test for herpes and then going from there. If that comes back negative too I'll definitely get a referral to a rheumy. I'm glad u got answers though.
Behcet's is autoimmune,l so is psoriasis. You may have inherited the tendency to autoimmune idorders. Stay with a good ophthalmologist and rheumatologist and rest when you are even remotely tired:
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Possible new diagnosis, thoughts?
Nervous and unsure.
Confused...? 
Burning skin: ?Peripheral neuropathy?
