Early RA or Infectious disease or something else?

Should I get tested too? Extreme neck and joint pain.
Sibling has chronic Bartonella most likely from childhood flea exposure, how can I get my doctor to test me?

My sister is 25F and I am a 27F, both in our late twenties. She just got her diagnosis yesterday.

I’ve been dealing with chronic joint pain (worst in my neck), enlarged lymph nodes, heart palpitations, fatigue, mood swings, positive ANA, positive RF antibodies (IgA, IgG, IgM), normal CCP, horrible anxiety and panic attacks, GI issues, and extreme food and medicine allergies (hives, rashes, swelling). My neck xray showed mild joint degeneration. My sister has been going through similar issues but more extreme and was finally diagnosed with Mast Cell Activation Syndrome and Bartonella. I’m concerned I have the same or another infectious disease. I work in entomology and have been bit by ticks and fleas, as well as my sister and I grew up around many animals that had fleas. Importantly, we got sick around the same time.

How would you recommend I pose this to my doctor? He is aware I’be having these symptoms as I’ve seen him 10+ times, the ER twice, a cardiologist, and a rheumatologist now with no diagnosis. I don’t know how to approach this. Thank you!

I hope you can see a rheumatologist who is not dismissive.

Have you been tested for Lyme, Bartonella etc?

With neck issues, I also saw a neurologist. And an orthopedist who does not do surgery (both of whom do lidocaine injections but I had reactions to them).

PT manual therapy and ultrasound can help. I have found Tai Chi to help the neck and sensory/pain issues over time. Sorry you are going through this!

Is your sister close by? If so, could you see her doc?best of luck to you both.

Yes, please do get a 2nd opinion. Praying for you.

Yes please see someone’s else. So sorry this is happening .

Definitely a new rheumatologist. I'm 69 and had Reiter's Syndrome in 1989-90 (similar to RA, and can go dormant after treatment). After getting H1N1 and high stress in 2009, I was hit by arthritis symptoms (enlarged lymph nodes, fatigue, sore heated joints, rash, bloating and other inflammation). The first rheumatologist just said we'll start the same routine, ending in methotrexate; he retired a week later. So, I researched anything that can help the symptoms, and went gluten free (GF). Turns out the H1N1 triggered celiac in me, and the symptoms went away in several months from GF. I've kept a food log and I am sensitive to a few things. Doctors have almost no training in food/symptoms or gut biomes. You might consider an elimination or FODMAP diet, to see if any of your symptoms subside, and a celiac panel blood test to rule that out. https://pubmed.ncbi.nlm.nih.gov/26190704/ . Exercise and controlling stress are also important to managing inflammation.

Thanks so much! I will definitely pursue PT and try Tai Chi- thanks for the recommendation!
I have not been tested for Lyme or Bartonella. I’m hoping my Primary Care Physican will order that test or send me to someone who can.

ps I don't eat gluten, dairy, nuts, citrus, avocado, salmon, chocolate. A dietician can do an elimination diet but you may not be able to get back on some foods- that is what happened to me! It did help inflammation.

Sadly, I haven’t been able to eat any of those for around 4 months. My hives and heart symptoms were really bad and so I have only eaten around 20 foods since then. I’m really hoping my PCP can send me to an immunologist so we can figure something out. Thank you!

@Nemaladyel a functional or integrative medicine doctor have been more helpful for me to be honest, with these dietary issues. But since you get hives, maybe a more mainstream allergist or immunologist will be very helpful for you.

Three doctors have mentioned eosinophilic esophagitis, another thing to think about.

My diet has been limited for 20 years and I don't have any problems 🙂 Hope you get help!