Systemic Lupus and HSV-2

Nibliss1023 Community Member August 19, 2008
  • 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.

31 Comments
  • curiouschic
    Oct. 31, 2013

    I have had fatigue, joint pain and muscle aches and headaches for years now. 3 years ago my blood work came back positive for lupus then I went to a rheumatoid Dr and tested again negative so he said it might be fibromyalgia having same symptoms. My boyfriend had a bump he was worried about in June after we had sex a week prior. In July I had full STD tests...

    RHMLucky777

    Read More

    I have had fatigue, joint pain and muscle aches and headaches for years now. 3 years ago my blood work came back positive for lupus then I went to a rheumatoid Dr and tested again negative so he said it might be fibromyalgia having same symptoms. My boyfriend had a bump he was worried about in June after we had sex a week prior. In July I had full STD tests and was negative. In Sept he tested positive for HSV 2. I did has a small rash on my b*** cheek with flaky skin looks like shingles but did not see a doctor about it it went away and it came back in the same spot a month later. In Oct I took a home HSV2 test and it was negitive but a week later went to clinic to be sure and my HSV 2 was positive. I have had no outbreak or symptoms so I'm wondering if it's a false positive.Can my unknown immune deficiency have spike this? Alll the doctors tell me I would have had an outbreak and my vaginal culture was negative.

  • Anonymous
    Anonymous
    Dec. 24, 2008

    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...

    RHMLucky777

    Read More

    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.

  • Anonymous
    Skred
    Aug. 28, 2008

    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. ...

    RHMLucky777

    Read More

    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. Laughing

     

    Skred

    • Nibliss1023
      Sep. 01, 2008

      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...

      RHMLucky777

      Read More

      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...Laughing  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

    • Anonymous
      Skred
      Sep. 01, 2008

      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!! Sealed

       

      Ask your doctor about...

      RHMLucky777

      Read More

      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!! Sealed

       

      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

    • Nibliss1023
      Sep. 01, 2008

      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...

      RHMLucky777

      Read More

      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)

    • Medeng97
      Sep. 04, 2008

      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...

      RHMLucky777

      Read More

      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

  • Anonymous
    Melinda
    Aug. 28, 2008

    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. ...

    RHMLucky777

    Read More

    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.

    • Anonymous
      Buggin
      Oct. 12, 2008

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

  • Anonymous
    May
    Aug. 23, 2008

    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...

    RHMLucky777

    Read More

    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

     

    • Medeng97
      Aug. 23, 2008

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

    • Nibliss1023
      Sep. 01, 2008

      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

    • Medeng97
      Sep. 01, 2008

      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. ...

      RHMLucky777

      Read More

      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

    • Nibliss1023
      Sep. 01, 2008

      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.

    • Anonymous
      Butterfly033
      Apr. 01, 2009

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

    • Anonymous
      Anonymous
      Apr. 05, 2009

      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

    • Medeng97
      Sep. 01, 2008

      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

    • Nibliss1023
      Sep. 02, 2008

      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

    • Medeng97
      Sep. 02, 2008

      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. ...

      RHMLucky777

      Read More

      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

    • Nibliss1023
      Sep. 03, 2008

      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

  • Anonymous
    TexasTech
    Aug. 19, 2008

    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...

    RHMLucky777

    Read More

    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!

    • Nibliss1023
      Aug. 20, 2008

      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...

      RHMLucky777

      Read More

      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

    • Anonymous
      Melinda
      Aug. 28, 2008

      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. ...

      RHMLucky777

      Read More

      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   

    • Anonymous
      Texas Tech
      Aug. 28, 2008

      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. ...

      RHMLucky777

      Read More

      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.  :)

    • Anonymous
      Melinda
      Aug. 29, 2008

      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  

    • George2$
      Oct. 22, 2011

      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!

       

    • Anonymous
      Altmed
      Aug. 05, 2012

      It's possible too that you may have been infected via dental work, surgery, any blood transfisions (especially pre-1900, although some blood slipped through the cracks even up to just a few years ago in isolated cases.

       

      The important part is that you know you hae it & if you feel a "tingly" spot, if you can tolerate it, you can work with your doctor...

      RHMLucky777

      Read More

      It's possible too that you may have been infected via dental work, surgery, any blood transfisions (especially pre-1900, although some blood slipped through the cracks even up to just a few years ago in isolated cases.

       

      The important part is that you know you hae it & if you feel a "tingly" spot, if you can tolerate it, you can work with your doctor & treat it. Valcyclovir is a common treatment that works well IF you get on it right away, and even if you missed the clues, it does help keep it from getting worse.

       

      Usinging salts in your bath (both sea salt and balt salts aka Epsom Salts without perfumes or colors) can help as well.

       

      It may help to have your husband checked for HSV as well as both of you, given the contact you had, being checked for other "Sexually transmitted" or blood-bourne diseases, like HCV (hepatitis C) as well. You may never know where you picked it up, although many were getting these from dentists that weren't adequately cleaning their tools, but may have thought they were. It may not have been sexually transmitted at all, but unfortunately still carries that name.

       

      Also be aware of other infections, such as candidiasis, aka candida oe other fungal infections, especially after being given any antibiotics. It may not present with the classic symptoms, but if you find yourself craving sweets & going through mood swings, itching, skin breakouts, hot/cold alterations, sometimes sweating, etc., it's worth a  run with Diflucan (usually start with a 300-400mg dose, then 150-200mg a day for some time, and if that clears it up, then you know you likely had a fungal infection.)

       

      If you are prone to yeast infections, get tested for diabetes & thyroid function, and your doctor may have other suggestins as well. You may have already been through this testing, yet it doesn't hurt to be checked periodically to be sure, especially if you have a family history of diabetes OR if you've had a previously low GTT or glucose tolerance test, or a spot check of you blood sugar that was previously low.

       

      All the best in dealing with this. I'm sure it can't be easy!

    • mdr
      mdr
      Nov. 26, 2010

      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...

      RHMLucky777

      Read More

      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?

    • Teach
      Feb. 12, 2011

      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.

    • Anonymous
      Altmed
      Aug. 05, 2012

      I would check with your rheumatologist & you might want to get a neurologist & pain management doctor involved. Some people do well o drugs like Lyrica, Cymbalta, or older methods like anti-depressants, Calcium channel blockers, etc., others don't tolerate it well & may need to go to other medications.

       

      Either way, it helps too to get to a...

      RHMLucky777

      Read More

      I would check with your rheumatologist & you might want to get a neurologist & pain management doctor involved. Some people do well o drugs like Lyrica, Cymbalta, or older methods like anti-depressants, Calcium channel blockers, etc., others don't tolerate it well & may need to go to other medications.

       

      Either way, it helps too to get to a good doctor that listens & understands the pain you are in, runs tests to try to discover the cause, and at least manages your pain, which can affect your immune system response as well. Out of control pain, without treatment, can create a lot of other problems - physical, emotional & otherwise - especially causing a delayed response of your immune system, tht can be serious if you have an infection, but your doctor doesn't believe it until a week or two later when your white count goes up.

       

      If you live in a rural area, you might be better off going to a university medical system, unless you are lucky enough to have a local doctor that is familiar wih these issues. Doctors that treat chronic pain, Lupus, etc. tend to stay at least in city areas, especially connected to university hospital systems.

       

      Finding a doctor with esperience with your conditions is important to be treated properly.

       

      My experience with rural medicine & many others across the US & other countries has shown that in order to get proper treatment that often, because of the costs, tests required, etc. that all to often, rural doctors may be great to treat the things most people have, and there are some gems out there - if you find one, stick to him or her. If not, get your records & get to a university or well-known research facility, such as Mayo, Cedars Sinai, and so on.

       

      If the facility is doing research of Lupus, it's complecations, etc., you're far likely to find sucess.

       

      I'd stay away from doctors right out of medical school, or connected to a rural, corporate-owned hospital system.

       

      That may mean traveling to see your specialist(s), just be sure all your doctors are aware of what is going on - medications (stay with a single pharmacy too, as pharmacist can catch possible drug interactions) & if possible, keep a journal of reactions to medications, foods, etc. (I'm aware ther are times this seems impossible, or is impossible when you are so sick.) 

       

      Don't be hard on yourself, just do the best you can! Having a compassionate family member helping can be invaluable, yet with chronic illness, can be rare too, especially after many years of illness.

    • herpies and lupus1
      May. 05, 2011

      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