Exciting News From My Healthcare Provider
It feels like something is suddenly going right again?
This morning, I had a follow-up appointment with my Family Nurse Practitioner (FNP-C)/Primary Care Provider (PCP). This is the guy I saw a month ago to first establish care, and I was very hopeful about working with him since he actually appeared to know more about the basics about lipedema.
For instance, when I mentioned how I have lipedema that progressed into lipo-lymphedema, he actually commented that 1.) lipedema generally does not respond to traditional efforts to lose weight through diet and exercise, and 2.) he wanted to take any recommendations into account from my lipedema surgeon/specialist in California.
Those two remarks, plus his overall bedside manner as a medical professional left me very hopeful about today's appointment. He seemed to listen well, did not rush me out, and came across much more like a true partner in my healthcare, if that makes sense.
This morning, we chatted about getting back onto my ADHD med, after we sorted out why my blood pressure often runs high at the doctor's office. Vyvanse is an expensive medication, however, so I'll have to wait on the approval for my insurance company.
He asked what other questions I had, so, I talked to him about my frustrations with my joint pain and stiffness. I explained how limiting that is in my daily life, and how I'm unhappy with the “wait and see” approach taken by my rheumatologist and orthopedic. They're not doing enough to help me manage my growing symptoms.
My orthopedic is treating me like I only have wear and tear (osteo) arthritis, and my rheumatologist keeps waiting for my antibodies to get worse even though I already have so many autoimmune symptoms already.
I explained how it especially bothered me since I felt so much better on doxycycline, the antibiotic a dermatologist prescribed for my umbilical infection. As strange as it sounds, the doxycycline seemed to give me far more energy and relief from joint pain and stiffness.
One thing that I feel has been lost in translation with most of my doctors is that it's not ONLY knee pain holding me back. It's all of my joint pain, stiffness, and flare-ups that make my daily life so difficult. Almost two years ago when my right knee first became so painful, I told EVERYONE how I couldn't imagine spending another year with that sort of pain. Yet none of the anti-inflammatory medications did enough, and the knee injections don't last forever, nor can they help with my overall fatigue and small joint pain.
I don't think I said all of that, of course, but I tried to say as much as I could concisely explain about my frustration and curiosity regarding the pain relief I felt on that antibiotic, and my other physicians’ unwillingness to look further at my autoimmune symptoms. I've tested positive for anti-nuclear antibodies for a few years now, but I only have anti-RNP antibodies. My rheumatologist said that while they're out of the normal range, they're still not a high enough titre for him to do anything beyond testing my blood again next year.
I honestly wasn't expecting to get anywhere, and when my FNP-C said he felt good on a related antibiotic, I expected him to shut down the entire conversation.
Instead, he said he wasn't surprised at all because he knew exactly what I was talking about! Then he told me about his his former supervising physiciann, who had rheumatoid arthritis. That doctor didn't want to take the usual biologics or steroids, so, he did a “deep dive” and began focusing on his gut health instead.
I almost couldn't believe what I was hearing.
My FNP-C said they have used the same protocol for other patients at the clinic with rheumatoid arthritis because it works to reduce their pain and inflammation, and that he'd be fine to put me on same the protocol too!
The rheumatoid arthritis protocol works like a gut reset. He prescribes two antibiotics plus an antifungal and an OTC probiotic), and I follow some basic dietary advice to avoid inflammatory foods like added sugar, red meat, pork, dairy, and alcohol. Unsurprisingly, he recommended lots of fruits and veggies, fish, olive oil. A Mediterranean pattern of eating.
Usually, the RA protocol lasts for about 7 to 9 months, depending upon how each patient is feeling. After 7 months or so, if I'm feeling good and mobile, we'll take a break. If my symptoms return, I'll get back on the meds again.
Occasionally, one of the prescriptions might darken a patient's skin, like bruises, but he says we'll cross that bridge if we get to it. Some patients don't care because they feel so great, and others decide to try something else.
Rheumatoid arthritis runs in my family, but my rheumatologist never seems to think my symptoms are noteworthy enough to do anything and I never thought to press for an RA diagnosis because I didn't know if all of my symptoms counted. Or if they were bad enough.
Obviously, I'm nervous whenever I begin a new therapy, and I worry about getting my hopes up too high, but in this case, I am pretty excited.
Tomorrow, I plan to pick up the prescriptions from the pharmacy, and so far, it looks like everything, aside from the probiotic, will be free(!) and covered under my insurance. I feel so grateful to have found this guy! He is the first Tennessee healthcare provider I've ever found to be so helpful and understanding.
I suppose it's also possibly a good thing that I've got this hernia issue that led to the infection—otherwise I might never have learned about the option of treating joint disease with antibiotics!
Isn't that amazing?
Between this protocol and physical therapy, I am feeling very hopeful about finally seeing better results.
Next month, I'll check in to let him know how the RA protocol is going, and then we'll talk about trying Zepbound injections, which the FNP-C finds to be more effective than Wegovy, and from my reading, it appears to be helping other patients with lipedema and lymphedema experience less inflammation and swelling.
It all feels like pretty good news so far.
Wonderful news!
So excited for you!