Lupus in men & newly diagnosed hsv --herpes simplex 2

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Moki- 116
New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/2/2013 2:29 PM (GMT -6)   
I'm new to this forum, a man very dear to me has just contracted herpes and currently has lupus - can anyone point me to a reliable medical resource so I can become more educated as to what awful things he can expect in the next few weeks, months.
I know he's consulting his doctors but refuses to share any information with me. Any direction to helpful info would be greatly appreciated or if anyone in the community suffers from this double condition, pls post . Thx

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/2/2013 3:04 PM (GMT -6)   
There is lots of information available at Lupus does not have a predictable timeline of symptoms, it varies greatly from person to person. Check out the list of the "4 of 11" symptoms needed for diagnosis. Some people get better (Lupus gets "quiet", rheumotologists don't use the word "remission"), some people stay the same, some people get worse. "Awful things" aren't necessarily coming up in the future.

I can't speak to genital herpes (Herpes Simplex 2), but I've had oral herpes for over 40 years. It doesn't seem to be affected in any way by the 11 years I've had Lupus. I would think that any normal website with genital herpes information would apply.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 8/2/2013 9:29 PM (GMT -6)   
As Lynnwood said, lupus is highly variable.  It presents, progresses and responds to treatment differently in each case.  The good news is that most cases are treatable (not curable) and many are able to lead normal lives.  Others are not so fortunate and can have a variety of symptoms and problems. 
I had a severe attack but have been in full remission for 7+ years.  If anyone, including a doctor, tells you what is going to happen in an individual case, that is not possible.
Lupus is not the end of the world and most eventually get it under control or make adjustments by defining a new normal and carry on with life.

New Member

Date Joined Sep 2013
Total Posts : 1
   Posted 9/8/2013 12:00 PM (GMT -6)   
Hey Bill, Apologes this possibly isn't then right place to contact you however i'm at my whitts end and feel like ive just had my heart torn out. I have just been diagnosed with Lupus to say i'm petrified is an understatement - Im not eating or sleeping and feel worse with every passing day.
I have read rightly or wrongly that Lupus patients need to be carefull what they eatincase they provoke a flare however after looking online i can't actually find a list of approved foods all i can find are foods to avoid !
Can i also ask you what you eat and what supplements if any you take, also if you still work ? apologies once again for the multiple questions i have so much to learn.
I know you shouldn't read into too much on the internet and hey guess what i have and also frightened myself half to death - i have no idea what the future holds for me but am frightened not only for myself but my family.
Take care you're an inspiration to use men - I am 45 although i feel i've possibly had symptoms for the past 3 years

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 9/8/2013 12:12 PM (GMT -6)   
Diet can be a factor for some but many have found it has no effect.  One of my early doctors was a well known clinical researcher for lupus and said that having a good, balanced diet was beneficial to anyone.  He also said that some patients benefitted from an anti inflammatory diet like the one that Dr Andrew Weil and others advocated.  There are also some foods that lupers should avoid.  Nothing has been proven conclusively about diet and lupus except for a few foods that should be avoided.
Many follow a gluten free diet which is really only recommended as a treatment for celiac disease or intolerance.  There is probably a placebo effect for some when going on it but again, nothing has been proven by medical researchers. 
My personal experience is that  diet did hot help or hurt in my case.  I did modify my diet slightly to make it a little better but nothing draconian and 8 years into lupus I pretty much eat what I did before getting sick and am in full remission.
You also have to take into account what meds you take.  For instance, if you take prednisone, reduce carbs in general and avoid simple carbs if you least any additional refined sugars.  Of course, that is good advice for anyone and I have been doing that for the last 50 years anyway.
You are a little younger than my kids but I can tell you that after a life threatening and crippling cases of lupus and polymyositis (lost 40 lbs of muscle in a week which left me quad with a feeding tube) I lead an active life even in my 70s with some restrictions.  Even with those I am more active than most my age.
Assume you will be OK, live in the present, manage your healthcare aggressively, and remain optimistic about your prognosis.  If I would have listened to all the BS and even professional forecasts I would not have made it let alone be able to live the life I do.
PS - you find more negativity on the internet and many of the successful people stop posting as they get better.  That is why I continue to give people advice and hope.  Won't happen for everybody but it can happen for some, like me, even for those with extreme cases.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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