i want to investigate lupus, can someone gave me a link to a lupus board.
Posted by sixgoofykids (Member # 11141) on :
Try Google.
Lupus is one of those diseases with an unknown cause.
Posted by Keebler (Member # 12673) on :
- Many diagnosed with lupus have been found to have lyme. Treating the lyme often changes the "lupus" diagnosis.
Still, you can easily find what you need through your own search at Google for a "Lupus" board or the main organization for education for that.
Sometimes, a person can have either lyme &/or lupus. There is the autoimmune condition of "lupus" for sure. It's just so often used as an umbrella diagnosis and underlying chronic stealth infection are frequently not even considered.
Past threads here are plentiful on this topic. You can search here for "lupus" in the subject line:
For me, my bloodwork ruled out lupus as a cause of my illness. So that was that.
If you end up with a positive ANA though, just keep in mind that Lyme can cause that to show positive. But I think the bloodwork for lupus involves more than just the ANA. For me they did a "lupus panel" which tested a lot of markers.
My ANA did end up being negative, but like I said, that's not always the case in Lyme.
Posted by Keebler (Member # 12673) on :
- You have only to wait until Monday to see your LLMD.
From Melanie Reber -
Posted by Parisa (Member # 10526) on :
Street,
Check out www.roadback.org website for the treatment of autoimmune disease with antibiotics. I believe the Lupus patients have a harder time metabolizing certain drugs so it's important to figure that out before taking drugs.
Posted by canefan17 (Member # 22149) on :
There's no such thing as Lupus.
It's as made up as every other syndrome in this country.
Slap a prescription med on it and laugh all the way to the bank.
Diseases with no known cause = not a disease at all
Posted by seekhelp (Member # 15067) on :
Do we really believe all these other diseases are fake? Is it realistic to think a cause can always be pinpointed?
Posted by sixgoofykids (Member # 11141) on :
It's not that they are fake, it's that there has to be a cause. No, they can't always pinpoint it. If I had a disease with no known cause, which I did (fibromyalgia and chronic fatigue syndrome), I'd keep looking for that cause until I found it.
Posted by lymewreck36 (Member # 4395) on :
There is such a thing as lupus.
It is a separate entity from lyme and associated infections, with symptoms clusters of its own, and blood work of its own.
I have had lupus triggered by my anti-malarials. When it happens, it is horrible, and there is no mistaking it.
What I have have had is "drug induced lupus."
Googe the Lupus Foundation of America. I think that is where I went for information. It was very helpful. But be careful.
Sometimes the body does attack itself. Sometimes we don't know why it is doing it....infection, a drug, or some "unknown" thing....
But it does happen. Lupus does happen.
Good luck with that, Mary
Posted by sutherngrl (Member # 16270) on :
I do believe the body can attack itself, but there has to be a reason.
My nephew has MS, got it when he was 20. Hard to believe a very healthy young man just woke up one morning and his body decided to start attacking itself.
There has to be a bacteria or viral infection that triggers the attack. Now whether or not the bacteria or virus stays or clears and then the body can't stop attacking......I just don't know. I think its attacking because there is something foreign there to attack. That makes the most sense to me anyway.
I do know that drugs can also cause this reaction (autoimmune reaction), but once the drug is removed then the attack should end. Same with bacteria or virus.
Posted by msalilea (Member # 17459) on :
If you go to the Lupus Foundation of America (LFA) website you can find a lupus forum.
It's hard to say what is real & not real... As far as lupus goes they say it's autoimmune, we carry a gene & if life throws us the right triggers the diseases is activated. You can google search lupus triggers. There is a newer book called the Autoimmune Epidemic showing research connecting chemicals to autoimmune activity.
There are a handful of tests for lupus, but no one exact test. There are only 3 drugs approved by the FDA for lupus & non designed specifically for lupus...they are asprin, Hydroxychloroquine & prednisone. There may be one more that just got approved but it may still be in the testing stages...it had been 50 years since a new drug had been FDA approved for treating lupus. Funny thing...the new drug will be released soon & now there is actually lupus awareness advertising. Interesting. Anyways I have SLE Lupus, but may have lyme (instead/as well???) I do not know, that's why I am here...to learn Posted by Pinelady (Member # 18524) on :
I had a lung specialist test me for Lupus when I
showed her my hot red toes, it was neg. I was
there for lung nodules she said was histo. Both
went away. Next came the abdominal pains.
Posted by sapphire101 (Member # 6638) on :
My daughter was dx'd with lupus or should I say misdiagnosed. She has lyme.
Posted by lightparfait (Member # 22022) on :
I have lupus still, but am constantly working on the root cause. I get retested twice a year to see if I am getting better numbers.
I did have lyme, and co-infections that are now gone! I was hoping as was my llmd that with lyme and all co-s gone, my lupus would have resolved already. This happens for most of her lyme/lupus patients...but has not yet for me.
Even saying this, all my lupus symptoms are now not showing. But still have the high ANA. So do I still have it or not? What is the true test that says it is lupus? Is it ANA or is it symptoms or do you need both? I get different MD's telling me different things!
I believe that the root cause of my particular lupus...was not lyme. But I do believe the lyme and co's brought out more symptoms with the immune response. By clearing my body over the past two years, my immune system is finally able to work properly, has helped my lupus symptoms resolve. But I may always have the residual disease from waiting too long for proper treatments.
I never took the lupus meds...I wanted to do this in a symtematic way and see what I was left with after lyme was gone.
As I now have no imflamation...I am not recommended to take the lupus meds any longer by my md and llmd...so that is good. I will stay as natural as possible unless my life is threatened.
I am working on clearing my body of other allergies and conditions to see if I eventually get a normal ANA reading. I am feeling fantastic, but still know I am not perfect. May never be...but I have regained my life!
For me, the jury is still out on if lupus is just a syndrome or a true disease. I think it can become a lifelong disease...or if treated early, can be eradicated! I think it is developed over time.
Like lyme, no one can say exactly why some go into remissin or have it totally gone...and others not. Each is so individual, so it proves to me that it is much more than lupus and lyme...it is a deeper dysregulation happening.
My heart says that lupus and other things like MS, ALS, etc...are caused by some things that could have been avoided...leading to these diseases developing by our immune system being overloaded.
Would love more research linking this seperate diseases...to get to the root of why these are occuring. I think being miopic with research and funding for only lyme, or only ms or only lupus will never help get to the root and prevention of these chronic conditions. We will be more entrenched with living the labels/diagnosis put on us!
We all see a link...but have different manifestations or personal experiences. Our LLMD's see the link as well.
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