Do any of you have Lupus (SLE)? I was wondering if anyone could help me out with dealing with Herpes and an auto-immune disease.
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Systemic Lupus and HSV-2
8/23/08 7:53pm
I have SLE and herpes. I did a series of new age ozone treatments a few years ago which seems to have rendered the herpes dormant. It didn't seem to affect the lupus, which I currently take cellcept for. The ozone treatment is like an enema and you can get it at some natropathic doctors. I think I had it 2 or 3 times a week for a couple months. Also, keeping a low sugar diet helps both conditions.
much love and good luck
9/ 1/08 3:15pm
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
9/ 1/08 6:56pm
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
9/ 1/08 7:08pm
9/ 1/08 11:49pm
9/ 2/08 9:31pm
9/ 2/08 10:23pm
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
9/ 3/08 11:49pm
4/ 1/09 4:37pm
4/ 5/09 2:18am
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
8/28/08 3:18pm
I have Lupus and Herpes. The test for Lupus is an ANA. The test for Herpes is a Titer to measure your Igg and Igm response for Herpes 1, 2. There is also a Herpes 6. The Igg and the Igm will tell your Dr. whether you have Herpes and whether you have an active case and if you have a long term history of it. It is just a blood draw. They can also culture the blisters in the active stage. I do not know your symptoms or if you have skin lesions from Lupus, but traditionally Herpes shows up as Herpes 2 below the belt and Herpes 1 above the belt. Unfortunately as a result of a prolific loving society, we now see both in both directions and Herpes can be systemic. Herpes is a virus that is incurrable, however, it can be put into remission with antivirals made specifically for Herpes. MANY people have been misdiagnosed with many neurological disorders like MS, Lupus, ALS, etc. and it has really been Systemic Herpes. Even an MRI can show lesions that are assumed to be MS, when upon autopsy have been found to be active Herpetic lesions. Again, this can be controlled with proper treatment with any of the antivirals made for Herpes. An infectious disease specialist can give you the best info about Herpes, but a Primary Care Physician, an Internist or an OBGYN can order the tests and treat as well. Systemic Herpes requires large doses of the antivirals. Whereas a history of just a couple cold sores every few years or so would not require as much, but treatment should still be initiated. Symptoms vary from mild flu like to radical neurological events. I am not a Dr., but I am a Medical Consultant/Medical Investigator/Research Specialist and I have personal experience with both including years of research. If I can help you further, I would be happy to do so. You can reach me at 520-883-7600 Mountain Time 10-6 Tues - Thurs.
8/28/08 5:32pm
Hi Nibliss,
My wife has had lupus since 1955 and herpes in several of it's eight forms during that time. Now 62, she is in good health and one of the longest lived survivors of the disease doctors said would kill her by age 14.
She is generally symptom free from herpes unless she is mentally or physically stressed for some reason. It presents buy itching and then breaking out. We keep a ready supply of Acyclovir on hand in cream and pill form to combat breakouts. She usually gets it on her hand.
HSV-8, AKA cytomegalovirus, almost killed her a couple of years ago after her kidney transplant. 80% of us have CMV and are not affected buy it, but she didn't and spent a long time in intensive care.
Living with herpes and lupus requires paying attention to your condition and calling your doctor ASAP when you don't feel good. You may be limited in some of your physical activities, but she has two sons and 12 grandchildren - so you can live a pretty normal life.
Pay attention to your kidney health. In addition to damaging the skin and connective tissue, lupus can attack any organ. It destroyed her kidneys. Modern medicine can do wonderful things, but you are in charge of your health. Lupus takes some of that away, but so will a traffic accident.
Make sure you wear sunscreen and cover your skin. Lupus is named after the wolf-like markings on the face caused by exposure to the sun. Unsightly but harmless and easily concealed by makeup.
No one will know unless you tell them. Be sure you tell your significant other so they know they will be caring for you from time to time. Other than that, enjoy a long, productive life. 
Skred
9/ 1/08 3:04pm
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
9/ 1/08 7:12pm
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
9/ 1/08 11:56pm
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)
9/ 4/08 1:01am
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
12/24/08 12:51pm
Was reading the posts here just wanted to clarify a little on the diffrence between HSV1 & HSV2 there may be a little confusion for one of yas just helping w/a better understanding please don't be offended. Iam HSV2 positive Had it about 20 years so therefore my outbreaks are very far inbetween only had it twice this year & with only one little blister each time, Stress also plays a big factor in activating the virus bringing on a outbreak. Menstrauation as well does this due to our immune systems are low at that time for the ladies this is. HSV1 are cold sores/feverblisters etc... that appear on the upper part of the body mouth, eyes, face etc.. HSV2 are genital or anal area blisters. Its has nothing to do with how many blisters appear. yes you can get oral HSV2 if you been performing oral sex on an infected person. There are times the virus may be active & you have no blisters present. The virus lives dorment in you nerve cells sometimes near the skin but mostly near the spine when triggured the virus travel back down the nerve path back to the area where it was first contracted. the same way chicken pox lays dorment forever in you but may be reactivated later in life and appears as shingles(also herpe family) a very painful condition that runs a nerve line as well. I am of a medical profession if you would like to confirm this please just ask you ob/gyne or pcp or a medical web site. Im sure they'd would explain, more so an ob/gyne. Usually outbreaks become less & less as time goes on, unless compromised immune system or very active stressfull life style.
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I just found out that I have contracted HSV2 yesterday from my husband. I too have Lupus and have been diagnosed with it for approx. 12 years. I am currently not having problems with Lupus, but now I'm really concerned about what will happen with it now that I have this new disease. This is just another set of worries since I still haven't confronted my husband about this.
I'm sure all of this stress and worry will do wonders for both diseases...
I hope someone responds to your inquiry with some help...advise...etc.
THANKS!
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
I was diagnosed with SLE earlier this year and had a very severe flare. Then just three weeks ago experienced my first ever outbreak of gen. herpes. I have not been sexually active in over two years. I am currently taking Cellcept, Plaquenil, and Prednisone (low dose now) to control my lupus. So far the tests have all been inconclusive as to whether I truly have herpes or not. The culture from an active sore was negative, a biopsy indicated it was consistent with herpes, and the bloodwork was negative for antibodies for HSV1 and HSV2. I am going back to be retested in three weeks. I took a 10-day dose of valtrex which seemed to be helping to make the red lesions subside but now that it has run its course they have reversed course and are back to looking how they originally did. I don't understand any of this and am looking for advice as well. How long do outbreaks usually last for someone with SLE?
I am dealing with the same situation. I was just wondering if you ever found any treatment that worked. I am in severe pain and my gyno doesn't have any answers or helpful treatment. I would love to hear from you. Thank you.
I ,just found out that i have lupus and i went to the doctor and wanted to know why i kept on breaking out in the same place the doctor looked and said you have herpies i got worried all over again i told my husband
If you hve a negative test 2 times for HPV2 could the genital herpes be coming from the Lupus?? Especially if the partner, you know it has to come from, has a negative blood test for the Herpes?? Help!