I’m feeling quite sad and desperate and I’m looking for answers my doctors refuse to give me. I’ve been diagnosed with Behcets according to all my doctors except for one, who’s sure I have herpes. I have almost all the symptoms of Behçets, I’ve been taking herpes medication without relief (but prednisone does the trick within a few days), I’ve been tested negative for herpes in my blood and ulcers twice and my boyfriend of two years has no symptoms. This “herpes doctor” now did both a blood test and a swab test of the ulcers again and both came back positive with herpes. To me, there is no possibility of me ever getting herpes.
I’ve read about the HSV virus being prevalent in Behçets ulcers and blood without it being herpes. Does anyone know more about this? I appreciate any help I can get.
Thanks,
Stina.
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Stin4
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I too have a herpes diagnosis. I've had Behçet's since I was a child. And have been told I had herpes off and on since I was young (too young to be sexually active). Just last month the herpes diagnosis is back. I've been my husband for 13 years. He has zero symptoms. The medications that treat herpes don't work at all. I've explained to my primary dr that this is common in patients with Behcets. He's clueless. Its frustrating. My rheumatologist isn't worried and is aware that the herpes virus shows up in blood work without having it. Don't stress too much. It's all so overwhelming however you have this wonderful community of people who know the struggle. We all are just as frustrated with the doctors who lack knowledge and the lack of effort to educate themselves about Behcets. I wish u the best. Keep us updated!
There is HSV1 and 2. Most people may have come into contact with HSV1 as it is a common virus causing cold sores. Even if you have never had cold sores you can still have the virus. HSV2 is genital herpes which is sexually transmitted. It may also be possible to transfer HSV1 to your genitals?
I know the centre of excellence ran a whole batch of tests for viruses and anti bodies, herpes is one of them. If you try colchicine and your ulcers disappear, then it’s a good indicator as with the steroid it’s more likely to be Behcets. Try calling any of the 3 centres for help, or Behcets UK, Liverpool we’re very good by phone and email. Good luck.
Hi, yes, either Behcets UK or direct with the centre. They answered some emails from me before I was a patient there and other centres answered too. Best wishes
I have had a similar mystery going on for a long time. My genital manifestations does not look or behave like classic herpes, but are of a more chronic granuloma-like lesions that leaves small scares theat only can be treated with steroid injections.
One of the leading dermatologists in Denmark ruled out HSV for a very long time and maintained the Behcets diagnosis, but then we tried high dose acyclovir which seem to have effect.
That leads me to be unsure whether my Behcets diagnosis is correct or if I should be looking more into AS instead ( I have the HLA b27 gene).
I am curious: Does your genital manifestations look like herpes, or like Behcwt's or is it behaving different?
Even if you don’t know what’s going on exactly, remember that you still know your body better than any doctor ever will. Every time I get genital ulcers (from Behçets), I immediately get tested for herpes just in case. Always negative. Except one time, just like you.
Another commenter mentioned the different types of HSV and how common 1 is. But something else I learned from this and other bloodwork is that the positive number matters too. The number can indicate if it’s an active or passive positive. For example, if I recall correctly, my “positive” result was HSV 1 at 0.9. Essentially my doc said even if it was oral that got transferred, there’s no way it had anything to do with my current genital ulcers. A number that low indicated an infection from a long time ago. I’d need it to be an 8.0 or above or something for her to have said the two are related.
Most lab work gives you the range of what’s considered positive along with the result. See where yours lies, then maybe bring it up with one of the doctors who believes you about your body. It may not be possible, but also consider stopping visits with the doctor who won’t give you a Behçets diagnosis -not because you don’t like his diagnosis, but because it sounds like he doesn’t listen to or trust you about something you actually know more about than he does (your own body).
I know I know lol. I hope this helps. My 27 yr old son is a behcets patient. He tested negative for herpes even herpes one (which almost e everyone has). That was weird but behects is weird. He was on acyclovir for ever but changed over to famcyclovir. It made a big difference immediately
The acyclovir wasnt helping or wasnt helping enough. I think infectious disease dr changed him over. I think it was the rhumey (who we love) that didnt know why it made a difference but wrote the script because it worked since it was the same family of meds. Ask the dr if he can change it to famcyclovire
Hello there... I really understand how frustrating this can be. For years I had doctors insist on the same thing, but when they’d run tests they were negative. Many doctors just didn’t know what to make of the oral ulcers and of course herpes being so common, they assume it’s that. I, too, never passed it to my partner, so I was always confused to how that could be a possibility.
Interestingly, Epstein Barr Virus is in the herpes family, along with chicken pox and shingles. EBV has been shown to trigger autoimmune disorders(including Behcets), but most doctors don’t test for it. Apparently many of them don’t even test properly when they do. My naturopath doctor ran a test and it showed high EBV antibodies. 90% of the population has been exposed to EBV and it typically lays dormant in the body. If immunity is lowered it can come out of hiding and wreak havoc. There is a lot of research suggesting EBV plays a major role in triggering diseases like MS, lupus, Hashimotos, etc. So, if you ever get flu like symptoms- low grade fever, swollen glands, body aches, extreme fatigue- during or before a flare it may be worth a shot to test for EBV antibodies.
Do your best to get informed on as many aspects of your health as possible. I’ve found that Behcets management requires a multi-faceted approach. Most importantly, eliminate as much stress as possible!
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