No doctor can seem to figure out what's wrong with me--maybe someone here has been in this situation? I've been feeling awful for about the past 6 months...I'm always tired (even though I'm on Adderall!), and I've been having cognitive problems (trouble remembering, concentrating, even speaking well) to the point where it's affecting my work. I've had various tests done--the ANA, which is positive for lupus but all confirmation tests are negative, and Epstein-Barr (my levels are always quite high, but apparently that's not unusual?). I've also been diagnosed with Raynaud's and erythromelalgia, which is kind of like a reverse Raynaud's (your knees, hands and feet can get really red and hot.) Also, strange: I had shingles at a pretty young age (I was 30 then, I'm 34 now.)
An infectious disease specialist I saw thought I might have CFS but he blew me off because "you already take antidepressants and that's all we give people with CFS." (Yeah, he was a jerk.) He basically told me to go back to my shrink. But too much suspicious stuff is going on for me to think this is related to my depression. It seems like something isn't right with my immune system. For those of you with CFS, is there another type of doctor I should see? (beyond a rheumatologist and an infectious disease specialist.)
I'm sorry you are having so many problems lately. It's never fun to not know what is going on in your body.
First of all, the ANA can be positive one day and negative another. It can be affected by different drugs such as Plaquenil -making it neg, or if you were in the sun before one of the tests it could be positive. Also, a positive ANA doesn't always mean Lupus. You can have this with some other autoimmune diseases such as RA.
One question: did the depression start before you became ill in the past 6 months or has it been a issue in the past?
Do you have any joint or muscle aches and pains? How about inflammation? Have you had a SED Rate or CRP done? Vitamin D?
Take care! If it makes you feel better, I'm in the same boat. The docs have bounced around from RA, Lupus, Lyme disease to MS. I've been sick for a year and 2 months and can not work. At least you had a positive ANA at one point. That should make them open thier eyes a bit more. And sadly enough, some doctors out there just suck! I went to a neurologist and he was convinced from the first consultation that I had MS. So we did an MRI, EMG tests and when everything was neg, he shrugged his shoulders and said, I'm sorry, I dont know what you have! Great answer huh?! Just keep trying and never give up! There are lots of us out there with strange symptoms and no diagnosis.
I tried yoga, just real basic stuff, and drinking lots of antioxident juices, eating yogart, and fresh fruit/veggies, and unprocessed meat. Taking lots of vitamins and taking walks, and it really improved the way I felt. Helping me from falling into depression. The important thing is to stay busy, eat good and be your own advocate!!
Keep us posted!
Thank you so much for responding; I'm sorry to hear that you're experiencing the same frustration. I've had chronic depression for over a decade, which makes it all too easy for doctors to blame my symptoms on that. I was really surprised when I got that first positive ANA because I haven't had any joint pain and I thought that everyone with lupus had it. So I wasn't all that surprised when the rheumatologist's confirmation tests said I didn't have lupus (sed rate, C3, C4 all fine.) However, I do have several other lupus symptoms (the fatigue, brain fog, Raynauds and erythromelagia); also, I've read that people with lupus are at increased risk of developing shingles. That's what's made it hard for me to totally dismiss the ANA--especially after I read that ANA may become positive before signs and symptoms of an autoimmune disease develop.
Have you ever had your Epstein-Barr levels checked? That's the other thing that's making this situation even more confusing. I also consistently test positive for one of the antigens that's supposed to disappear 3 to 6 weeks after the initial infection. No one seems to have an explanation for that one either!
I know how that can be. I moved in November, got married and then had a miscarriage in December, I then got sick in April, so they tried blaming mine on the stress from all the change. Dont let them blame it on that!!
I'm not sure that everyone with Lupus has joint pain in the begining. But Raynauds can cause a positive ANA sometimes. But you are right, the ANA is not very consistant on when it shows up in connection to your symptoms. Whatever you do, DO NOT let them dismiss anything you feel strongly about. A lot of doctors dont like you to look stuff up on the internet, or talk to people with similar symptoms bc they dont want people to get "panicy" But it is very important to find a doctor who will listen to you and what your have researched, this has helped me out a tremendious amount.
I have read about Epstein Barr false positives with Lyme disease patients. It can also cause the antibody irregularities that you have. I have not heard this with lupus patients tho.
I can relate to being passed off and around in the medical world. I went through quite an extensive round of tests before I finally convinced my Dr that I was really sick with something? Not sure what... but it was something and it wasn't all in my head!
I've recently started taking Savella along with Pristiq and have begun to feel better, but I am not going to stop with the idea of taking prescriptions... I would encourage you to look into taking supplements...ie...herbs/vitamins in an effort to combat your symptoms.
The more reading and researching I've been doing, the more testimonials I've found from people who may not have 'cured' their Fibro/CFS but they are able to lead normal functioning lives. At this point, I'm barely functioning... so anything that can get me close to normal, is definitely something I'm interested in learning more about.
Currently, I'm cranking up my daily vitamin intake and adding various things like Olive Leaf Extract and whatever else I can find that seems to rid my body of all sorts of toxins that could be causing my symptoms. I'm also working on my diet. I don't know if I'll ever get this excess of 40 pounds off of my body, but I've stopped drinking carbinated drinks, caffeine, and now I'm drinking between 60-80 ozs of water each day. My goal is to get to 100 ozs of water each day, I'll get there... just very slowly. I'm also trying to avoid any foods that have processed sugar and foods that have a high carb content.
Basically, I'm trying a lot of different things to see if I can find any relief at all that doesn't come in the form of prescribed narcotics! Ya' know?
Good luck to you, I wish you the best and hope that you can find some answers to what makes you feel better.
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