Follow up appt with another GP

[JennaShi]

Hey all it’s been a while since I last posted.

My original GP suggested retesting this month and in order to do that I needed to schedule an appointment. She is out of town so I scheduled with a different GP and had the appointment this past Friday.

He basically acknowledged there is something going on autoimmune/ systemically but since its mild there is nothing more they can do for me until or unless it gets worse (they dont want to do more testing either).

Also looked at my hands and the x-rays and said it could be autoimmune or anatomical (I think he thinks it’s more anatomical and I more see his point as to why).

He Also knew who the Rheumatologist was that i was referred to and said that since I am 30yrs old and have a mild case of something / everything is technically negative on my ANA, he brushed me and many others off.

So I guess there’s no need to worry anout these things as nothing has clearly shown up yet. So my question is: is there a possibility it all just could go away from eating healthy and correcting deficiencies? Has anyone done this or found your symptoms/ disease calm down? I’m only at 1:160 Homogenous so its not terrible, and I think we have figured out the the EBV is what is causing my platelets to drop by graphing it (platelets) and Lymphocytes together on Excel Microsoft program.

[AimeeA]

Sometimes you can feel like a chemistry experiment when you get diagnosed with lupus because so much focus can go onto the lab results.

But the ultimate test of whether you need to be concerned or not is based on your symptoms and how you feel. Some people get diagnosed with a flare and never have another one. Some have repeated flares interspersed with periods of doing fine.

I think what is important is to try to figure out what causes your own flares and symptoms and take steps to change your life to reduce them. For me, sun was a big factor in causing flares/problems, so I avoid the sun like the plague. I think allergies can ramp up the immune system, so I do things to keep my allergies under control. And stress really impacts me, so I made changes in my life to reduce stress levels (less stressful job).

So start focusing on the things that make you well and more healthy as much as lab tests, and do more of the things that make you feel better/less symptomatic, and less of the things that seem to trigger symptoms and make you feel less well. Let your body be your guide and don't obsess about lab numbers. Let your doctor decide if your labs indicate you need to take meds or change treatments.

Also note that some of the medications they use for autoimmune disorders can have quite serious side effects and cause other worse or as bad problems, so they don't want to hand those out like candy unless there is a really strong need for them to prevent serious issues.

So if your issues are mild, try managing them with lifestyle changes. I had some big problems and took meds for a couple years, but also made serious lifestyle changes in diet and looking for lupus triggers like sun, stress, and diet and avoiding them, and after doing that, didn't need the medications to keep everything under control. My labs are not perfect, but they don't need to be as long as my symptoms are mild and I take good care of myself.