I first emailed my doctor at the beginning of May about symptoms of illness. I had flu-like symptoms along with flares of joint pain. I have a rare genetic disorder called Familial Mediterranean Fever. However, I have had seemingly unrelated pain flares (atypical of symptoms) along with a worsening chronic pain for ten years that have left me on disability and unable to work. My emails were complicated. They included mentioning I had a flu that later turned to ‘itchy’ lungs and joint pain. Then I described symptoms of being freezing cold despite 80-degree weather, itchy lungs, an enlarged lymph node behind my right ear, and low-grade fevers. Then I had inflammation in my lungs and needed to have cough syrup to calm the itching and pain. I emailed my primary care doctor and my rheumatologist. When I saw my primary care doctor at the end of May, she did no tests but gave me allergy medication and nasal spray.
Mid-June, I had a week where the joint pain was too debilitating to sleep, running from the base of my right thumb to the right side at the base of my neck, to vertabrae mid-back connecting through my lower ribs. When I started having left-side lung inflammation while breathing in, I went to urgent care and a rheumatologist made me wait for a long time before telling me to try “swimming” and “massage” due to a Fibromyalgia diagnosis. My doctors are all through one big health system and they are able to access each other’s notes. He ended up prescribing Methylprednisolone last minute due a past prescription of Prednisone. It quickly worked to bring the pain down and stop the lung inflammation. The Methylprednisolone was the most effective medication I have ever tried and even helped the chronic pain far more than currently prescribed medications of weak Meloxicam, Colchicine (for the FMF) and Gabapentin.
I visited the Emergency Department once my pain improved because I realized I had also been shivering cold with the lung symptoms since May. My heart was normal and my left lung, where I had the pain, had multiple tiny subsolid nodules. My rapid strep test was negative but the follow-up culture was positive for a small amount of Beta Strep Group C. I was negative for HIV or TB, didn’t have a fever, had a normal white blood count and inflammatory markers were normal.
My primary care doctor referred me to someone to look at the nodules in my lungs to make sure they have cleared. She said that it was normal for “anyone to have Strep C” and that it didn’t require antibiotics and a nurse said “She probably thinks it’s part of your natural flora”. I pointed out that all my symptoms started on the same timeline at the beginning of May through mid-June, including 12 pounds of weight loss that had gone unnoticed by doctors, and that the only result so far was the strep. I printed out the email of detailed descriptions of illness and flares and the timeline they were on. I included past rheumatology labs or imaging tests that were positive before becoming a patient there and even made a little summary of history that included recurrent strep and strep before developing my joint flares ten years before.
I am switching to another rheumatologist in the same department soon and messaged that it was urgent for me due to the severity of my last flare-up and the hope that the Methylprednisolone had provided a path toward diagnosis and treatment that will prevent and treat pain. I at least never want to experience such debilitating symptoms again. The appointment was canceled and postponed a week. I tried to point out that my flare was acute pain and not something that was normal for me – I could not rotate to the right on the toilet, sleep for four days, use my right hand, or walk sometimes. The cold causes pain in my hands and feet and it affects my tendons, causing plantar fasciitis to act up. It felt as if most of the right-side joints were affected, along with the base of my big toes and thumbs, and that there was a tightness of connective tissue. My rheumatologist has been dismissive of symptoms for over a year, only stating that the inflammatory markers are normal and that I am fine on current medications. At our consultation, I told her that my cousin on my mom’s side has Ankylosing Spondylitis but she put in her notes “mother has lupus” and would not change it when I brought it up. She responded to one email to say I did not have rheumatoid arthritis or Raynaud’s disease but I have never suggested that I have any specific disorder – I have only described my symptoms and emailed during acute flares. I don’t know why tests are negative for inflammation but it seems like it should be enough that a powerful steroid was effective. A few days into the pack of Methylprednisolone, my joints all started popping like pressure was being released.
I am actually questioning whether I should switch to an entirely new health system based off these experiences. I could swear that there is something that comes up in my chart that is making doctors so lazy, rude, and dismissive. My interpersonal style is a little different due to inattentive ADHD, being autism spectrum. I am also trans and I don’t know who has access to this information but receptionists have also become very rude recently.
But my questions are : Is it normal to not be prescribed an antibiotic for a small amount of recovered Strep Group C? Especially with the symptoms like “itchy” throat and yellow mucus in the back of my throat that required cough medicine? Am I crazy in thinking I could have had an infection that went untreated? Could the nodules in my lungs be from an untreated infection? Is Strep C really “part of my natural flora”? Could I have an undiagnosed autoimmune disorder that might be connected with the strep? Could my symptoms be cancer since I have had rapid weight loss and the nodules on the lung or is it illness? Could I really just have a severe allergy? I have been referred to a specialist for it.
Is there a better place in the U.S. to find the answers I need?
Someone please help.