I have a question for others on here ... I was diagnosis that I have lupus almost 2 yrs ago . Has anyone else here been told they have other conditions . I have had a flair up of this Lupus condition and came to find the rash .. well in my private area and thought omg ... I went to dr and had a swab done only to be told that I have herpes 2 .. Has anyone else been told a misdiagnosis like this ?? Of course a blood test will determine the truth. My husband and I have been together almost 10 yrs and have had two children and my husband swears up and down that he has been faithful and I believe him .. The dr I have been seeing really doesn't know much about Lupus .. I'm really thinking I need a second opinion on this issue.. If anyone has similar to this please let me know....
Omg. The amount of misdiagnosis I’ve had… It’s crazy. Lupus is the great imitator. Get a second opinion when in doubt always. Lupus also comes with other autoimmune disease most often. I also have degos and sjogrens. Ciliac. And a few other minor things as I call them. It’s a spectrum. I’m sorry about your recent diagnosis. This place is a great source of knowledge. I hope you find more answers.
A friend of mine has becet’s disease which causes sores like that. It’s also an autoimmune disease.
I don't know anyone with lupus who does NOT have multiple other problems. Lupus attacks organs, muscles, arteries and veins, and causes other conditions. If you ever get a syphilis blood test that comes back positive, that's a sure sign of lupus. They used to use that in the old days when there wasn't much else too diagnose people with. Herpes 2, you might want to Google it. Its possible that it's not a sexually transmitted disease. Cold sores I think are herpes 2, and they aren't sexually transmitted. Chicken pox are some type of herpes, also nothing to do with sex. Shingles ls is a type of herpes.
Its been a trying time here .. I'm not sure about anything anymore. I get depressed very easy now and when things like this happen I try to explain it away , but times I just don't understand why I have to go through this crap . It puts a stress on my relationship and days like these I just want to shut down completely . Its hard and it sucks .
Lupus is not a singular disease…I dare say anyone dx with it also has a host of other hidden viruses or bacteria, etc… At least I do.
This is exactly what happened to me. However, the culture came back negative. Despite the negative culture results my PCP still says it "could be herpes." I know it's not because I have been celibate for the last 10 years. I have had this rash before but never had it tested, but this time I thought maybe I should because I had just been getting over shingles and thought maybe this rash was related because it was very painful and because shingles is a relative of herpes. In any case, I suggest you get a second opinion from your rheumatologist. It is likely he/she will be more familiar with the fact that Lupus rashes can and do occur ANYWHERE!!!!! Did you actually see the test results for yourself, or did your doctor just tell you that it was positive? I would ask to see the actual paper result from the lab to be sure he read it correctly. I'm not suggesting dishonesty, but I would still want to be sure. Please know I feel your pain. The whole thing was so stressful to me that I went into a flare that lasted a week.
Not all types of herpes are sexually related. Only one is.
heymj said:
This is exactly what happened to me. However, the culture came back negative. Despite the negative culture results my PCP still says it "could be herpes." I know it's not because I have been celibate for the last 10 years.
Hi Sheila yes I know there’s only one that is sexually transmitted and that is the one that he tested me for that came back negative. Actually he tested me for both and neither one of them was positive. Thanks for asking for the clarification.
I feel you will find many of us living with lupus have a myriad of other disorders, diseases, and sometimes incorrect diagnosis. I recently counted my separate ones over my life time, and it was over 40 of them when I stopped looking at notes, shaking my head in disbelief. Everything from hormonal issues, blood issues, joint muscle and nerve challenges, and degenerative conditions way before my time.
I would definitely get a second opinion. and in case you don't know, herpes simplex, the virus that causes "cold sores" can be on parts of your body besides around your mouth and on your face if exposed to it. Viruses do screwy things! They now have anti viral meds, have for some time, that are very helpful. Zovirax is one used for all forms of herpes, with great success for many people. My son got herpes 1, it went systemic on him, and since a long course of treatment with that drug, has been outbreak free for 15 years. There is hope!
Look up Behcet’s Disease - it’s like Lupus but causes vaginal ulcers. Hope this helps!
I have several other conditions and was diagnosed with most of them first.
I will have to look back in my notes tomorrow but there areare instances of false positives herpes virus tests. Did he do a blood test? Also you may have a maylar rash which does not have to be the better known butterfly rash on the face. It can also show up in the groin area. I will get back to you tomorrow with more concrete info
~Maré
As far as other conditions …buckle your seat belt. I have too many to count…which is not unusual when it hits comes to autoimmune diseases. Don’t be surprised of you are diagnosed with others down the road.Lupus is a complex disorder. I would recommend finding a rheumatologist who treats autoimmune/lupus.
Healing hugs…
~maré
I have many other diseases, in fact lupus was one of the later diagnoses. I think that’s how you spell the plural of diagnosis…lol. I started with Sjogren’s syndrome, then added vasculitis, then fibromyalgia, pleurisy and so on. Herpes typically causes blisters and can be spread through oral contact. If your hubby or any other previous partner had a cold sore that can spread it. Sorry. I doubt it’s herpes though, sounds more like a doctor looking for a simple solution. Maybe your husband can be checked for it? Herpes can lie dormant for many years.
There's an old saying that doctors used to say, it if it is a horse, why look for zebras? In this case, if you have an autoimmune disease, why not start there instead of pretending like it's not a autoimmune and it's herpes instead. I agree with Annemarie, it's much more likely to be autoimmune but with most autoimmune it seems like they have to rule out everything else before they will even consider the obvious. Geeez.....
Wow!hi!, sorry that this is happening, yes get a second, third, fourth, quickly??? Back in school many years ago, there was a schoolmate that had this, but she really was a virgin,but her genes produced this viruse and she was a cheerleader , very heartful, pretty girl, but when the football games started she would always break out with that rash, she would have to wear the leggings , while everyone else wore the skirts, but she always was going to the doctors, get as my doctors as it takes , before you jump to Crazie thinking…but make sure, get your husband to take a test also…Beverly L.
Thank you everyone for the advise .. I will be taking a blood test and my husband will also be doing the same thing. I don't want to think the worse. My dr's look at me and cant explain a lot of my elements because they don't act the same as Lupus proto.. I have 3 herniated disc all internal not normal for someone who hasn't been in an accident , one torn internally after C-section and a cyntrex in my spinal cord in which in the beginning was a tarlov cyst at s1 as they thought but has moved up to a cyntrex in my spinal cord , who knows what else they will find. Diagnosis with fibromyalgia , pleurisy , 3 herniated disc's , one torn , S1 so many to put out there .. Just totally frustrated with the whole thing .. And all started after have a C-section 4 yrs ago..