Systemic Lupus and HSV-2

I am so sorry to hear about your HSV-2. I understand that it is pretty easy for Lupus patients to pick up viruses like this due to our immune systems being pretty wacky. I got HSV-2 before they found my Lupus. I have had it for about 4 years and have just been diagnosed with Lupus this May. I have had a horrible time with my Lupus they can't seem to get it into remission. When my "cooties" break out it takes a long time for them to clear up due to my lupus. I wish you the best of luck and keep in touch!!

Neely

Herpes 1 is a one blister event and Herpes 2 is more than one blister event.  It is possible that you have had Herpes latent for many years and it may have just 'erupted'.  If you have NEVER EVER ever had a cold sore anywhere and you have never ever had sex with anyone but your husband, then indeed, it could have probably come from him.  However, Herpes being Herpes, can erupt as an early kindergarten cold sore, never show up for years and years, and then present as Herpes 2 later somewhere else.  We now know they can morph into other strains on their own.  If you are having problems in your marriage, this could be an easy excuse to divorce.  However, look deeply inside yourself for some answers, forgiveness of yourself and him, before you start throwing the book at him.  St. Exupery said, "Love is not looking at each other, but in looking outward in the same direction."  Love does not stop or start at the end of the finger being pointed.  My best to you and yours.  Melinda   

Thank you so much for your reply!  After sharing the news with my husband, he swore that he hadn't been with anyone else. However, several years ago, we went through a semi-party stage (we are in our early 30's).  I'm embarrassed now to say that this involved hanging out with a group of people in their early 20's and going out every weekend.  Through 'drunken' experimentations, we were involved in oral sex (a couple of times) as a couple with 2 different females (at different times).  I never would have dreamed, in a million years, that I could contract it from that!  Please note that we do not do this anymore - we have been married for 15 years and have only been with eachother through intercourse.  Through my research, I have found that HSV2 can also be spread from oral sex and this started to make more sense.  I seriously could have contracted this from one of the encounters.  I also discovered that he could have passed it to me, without contracting it himself (since, with my compromised immune system, I would most definitely get it).  He will be getting tested very soon.  HOW IRONIC WOULD THAT BE????  Anyway, I have come to terms with this, somewhat, and have realized that my mistakes from the past will live with me forever.  I feel pretty lucky that I have not had any breakouts from it and neither has my husband.  Strange.  A part of me is hoping that it was a false-positive or that the doctor misread the results.  But, I know that the blood test is very accurate.  Luckily, right now, my Lupus seems to be in remission; however, I am currently still taking CellCept and Plaquenil for the time being. Please let me know if you run across any additional information...I will keep you updated on my husband's results...I'm dying to know myself!  Thanks for all of your good advice.  :)

Not a problem.  If I can help you further, I can be reached at 520-883-7600 Tues-Thus 10 a.m -6 p.m. Mountain time.  Many blessings to you both.  Melinda  

If anyone wants to get in touch My username is actually 'Medeng97', not 'May'.

Was that really expensive? If it would make my herpes dormant it would really be worth the money. I am having a hard enough time with my Lupus to keep breaking out with herpes on top of it!!! Thanks so much for your reply!

I am on Imuran and Plaquenil for my Lupus. Do you know if I am even able to take Valtrex with my Lupus drugs?

Neely

I was on a low dose of prednizone and about 40 mg of plaquenil during the time I took valtrex. I never took imuran, so I'm not sure how that interacts with valtrex. Is imuran a chemotherapy? 

The ozone cost about $75 per treatment at the place I went to.  I can't imagine how much money I saved on valtrex all these years, though.  Note that there are two ways to receive ozone, the enema type and the iv.  Herpes resides in the spine, so the more effective method is the enema.  Also, the iv can be dangerous.  I did one iv treatment and started feeling a tightness in my chest. 

My lupus was stable at the time of treatment. I don't know whether you can do the treatment while your lupus is active.  You should ask your natropathic doctor about that.

Good luck,

May

Thanks so much!! Yes, Imuran is a chemo. I have been in a terrible lupus flair for about 4 months now so I would definately need to talk to someone about the ozone thing. I just hate having outbreaks along with these lupus flairs. They take longer to heal.

Can you please tell me where you went to get the ozone therapy.  I can't find anyone who does it.  

I had the treatment done in Hawaii by Dr. Ryan Ferchoff, info@drferchoff.com, 808-988-0800.  If you contact him he may be able to refer you to a Natropathic doctor in your area.

Good Luck!

May

Also, a good anti-viral you can add to your diet to aid with the treatment are dandelion leaves.  It's bitter so I just put a few pieces in my salad each night.  Since it is a dark green vegetable it also aids in blood production if your lupus gives you problems with anemia.

~May

Thanks so much for the dandelion leaves info. I can sure choke them down if it keeps me from breaking out so frequently. Thanks for all of your info and I will def see what I can find out about the ozone treatments as well!!

Neely

You're very welcome Neely.  I broke out practically every month before I found out about the ozone treatment, so I know how frustrating and depressing it is, and the stress of it all is such a set up for a lupus flare. 

If you are good about diet then you may be able to get the herpes under control without spending all that money on ozone treatments.  One healer recommended the whole approach (candida) diet.  It's a diffcult diet, a lot of restrictions.  Dieting this way creates an environment in your body that makes it difficult for candida to thrive, and herpes as well.  It seemed to also help with water retention from the predisone.  Personally I couldn't keep up with it though, being in college and all.  You can probably google it online and find the charts if you're interested.  Let me know if you need help finding it.

May

That is Awesome I will look it up and see if I can stick to it!! Thanks so much for all of your help!!

Neely

melinda if it is possible I would also like 2 contact you. Please lmk

Thanks so much! I am glad that your wife is doing better now. I am having a problem knowing the difference of a herpes outbreak or a Lupus flare. I get so sick and run fevers. I slept 16 hours yesterday and ran low grade fevers all day and today I just feel like I have a hang-over. I also had a bout with Shingles about a year ago before I was diagnosed with Lupus. I am just a nervous wreck most of the time and sleeping the other times...  I am trying to stay real positive while I am still being tested for some other muscular problems. Thanks so much for your time!!!

Neely

Neely,

That's a cute name.

You have a long life ahead of you, but you need a coping mechanism.  This is something to ask your doctor about.

My wife sleeps  lot, but, she has a schedule and it helps her out a lot.  She's been a teacher for 30 years, but on Saturday, don't bother her before noon!!

Ask your doctor about a referral to someone who specializes in coping with long-term, chronic illness.  You need a coping strategy.  I know you are young, an very pretty, but you have to learn to slow down.  Also ask your doctor for specific guidelines about when to call and when to just rest. Lupus will wear you out if you're not paying attention.

How was your weekend?

Skred

I definately need to get on a schedule. Since I have been out on disability I have done whatever my body (and my two year old) feels like doing. Some days mommy can only read books and watch movies with her and other days mom can play with her in the pool (after the sun sets...lol) and then some days my mom and dad have to come over to keep her because I can't get out of bed. Thanks so much for your advise!!

Neely (I was named after my grandmother's madien name)

Hi Neely,

Skred is so right about scheduling.  Stress is an activator for all kinds of illness, but its consequences are quicker and generally more pronounced for lupus, as your doctor's have probably discussed with you.  A good rule of thumb is to always take on somewhat less than what you feel like you can do.  It is difficult sometimes, but vital for the protection of your organs and your life. 

I felt healthy and strong at the beginning of winter 07, so I went to school 3/4 time and took on 2 part-time jobs.  By early 2007 I was suffering severe lupus exacerbation and ended up with acute renal failure.  I should have known better since I've had lupus for 13 years, but at the time I just felt like I could do more.  I also made the mistake of letting it get to me when people always asked what I did with all my "free" time when they found out that I only attended school part-time each term.  It didn't make much sense to be upset, because the counselor told me that none of the lupus patients at the school attended full-time.  But I was being human and stubborn. 

You are lucky to have found a support group early on.  I hope that all our comments are helping you to adjust and get everything under control.

~May