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ANA & anti-dsDNA positive then negative?

OK everyone I am here like a lot of you... I am scared, frustrated, and angry. Here is my story. I have been sick for 4 years and really sick the past 2 years... joint pain so severe I can't get out of bed, abdominal pain, fever, unnatural fatigue, feel like I have the flu all the time amongst other things. So, for the past two years I had been in my doctor's office at least twice a month. He would do blood work it always came back normal and he would dismiss my symptoms... he even told me it was all in my head and referred me to a psychiatrist. So, I quit going to the doctor. I moved in with my boyfriend and he couldn't stand seeing me in pain and he made me go to the doctor. I did... they did blood work. I expected everything to be normal as usual well this time it wasn't. I had the blood work done on 10/06/2016 it came back positive ANA and anti-dsDNA plus inflammation markers were high. Finally I had an answer... autoimmune... not an answer I wanted but an answer. I got referred to a rhuematologist and my appointment was a couple months out 12/29/2016. Do I begged my doctor to help give me something for my symptoms she prescribe prednisone for a 3 week period but no longer because it may affect my blood work for the rhuematologist... so that was in November I felt great no pain it was amazing besides the 12 pounds I gained lol. So, I see the rhuematologist on 12/29 and he talks to me for a few minutes and orders blood work. It all came back negative. I have been bawling my eyes out ever since it came back normal. Don't get me wrong I DON'T want to be sick... but I AM!!! I feel like my answer has been stolen from me... I just know he is going to release me from his care and I go back to not knowing or rather knowing and no one believes me. Has this happened to others? Am I crazy? Help me!! How do I get him to believe me and not release me from his care?
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1530171 tn?1448129593
Hi Heather.
I feel bad for you.
Don't get discouraged because of the negative findings.
There a few possibilities, which would explain the discrepancy.
Your positive anti-DsDNA does not guarantee a diagnosis of lupus and it actually can fluctuate from positive to negative.
The numbers in ANA titres may sound high, if you're not familiar with what they represent.
The ANA testing starts at dilutions of 1:40 and get doubled each successive time to 1:80, 1:160 and so on until no antibodies can be detected any longer.
The last titre were they were detected is the one used by the lab as your ANA titre.
Rheumatologists will not consider them as positive unless they are 1:160 or higher for their diagnostic purposes. They are many healthy individuals who have  ANA titres in the lower numbers, but as the titres go up, the number of healthy subjects goes down drastically.
If you want you can post the results with lab ranges and units of measure and I can look further into them.
Your undiagnosed condition comes in 4 different versions.
1st is how you perceive it, physically, mentally and emotionally.
2nd is how your doctor evaluates it.
3rd is how other people see it
4th is how it is REALLY affecting you physically, emotionally and mentally.
The last one is the most important!!!
My suggestions below deal with the 4th version.

I suggest you get hypothyroidism type 1 and 2 totally ruled out by getting Free T3, Free T4 and Reverse T3
thyroid tests.
Often low thyroid function is an underlying factor in A/I and other chronic conditions.
You  should also rule out thyroid- related deficiencies, specially iron, ferritin, B12 methylocobalamin & methylfolate (MMA test is required for these 2), vitamin D, iodine, zinc, magnesium (tissue levels), selenium, etc.

Another test I would try to get is an Adrenal stress Profile with 4x cortisol testing and 2 averaged DHEA (saliva)

A holistic type of doctor would be best-suited to help you with these. Look for a reputable Functional Medicine or Naturopathic Doctor in your area.
Let me know if you need any further details, but please
post also your lab results.
Best wishes,
Niko

Helpful - 0
434278 tn?1324706225
Heather, your story sounds like everyone else'.  It takes years to get a diagnosis.  Chances are your rheumatologist will not dismiss you because of your symptoms and the fact your immune markers are positive. What was your ANA and antidsDNA?
Helpful - 0
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