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A Bizarre Change in Condition

Polymyalgia Rheumatica (PMR) | Last Active: Jul 8 5:17pm | Replies (35)

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@glinda47

I agree with you, Patti, about func medicine. I have not looked as far into it as I want to. I live in the Washington, DC metro area and have checked many times for a functional doc. It's amazing how few there are and what bad reivews they get. It's discouraging. I am also interested in Ayurveda medicine and I am grateful that you brought it up. I don't think I have enough years left to do all I need to do.
I did see one doc who is an internist with interest in functional medicine and she was the best to date. Unfortunatley for me, she's in NYC, so we did a telehealth visit. She is treating my daughter for long covid and has her on LDN which has helped greatly. I very much trust this woman as she was the only one interested in putting pieces together. She had me do a lot of labs, none of which any rheums or internists would even entertain, including:
LYME DISEASE AB WEST BLOT
ANA,IGG W RFX TO AB PANEL
RHEUMATOID FACTOR
HISTAMINE, BLOOD
CERULOPLASMIN
TRYPTASE
CYTOKINE PANEL
IMMUNOGLOBULINS QUANT
The only one that concerned her were 2 cytokine measurements, IL6 and 10. I wasn't surprised. " The immune system is definitely overactive. This can be seen with postviral illness, autoimmunity, or in other areas. " She did think LDN would be helpful.
When I asked about "other areas," she said she'd really have to be in-person to address some scans or other tests to follow. I understood that. I really don't want a full body scan to rule out cancer, etc. But haven't totally slammed the book on it. Just not sure.

When I showed these results to my "new rheum," he threw them at me and said "We don't deal with cytokines and other xxxxxxxxxxxxxxxxxxxxxxx." x=words and a sorry explanation I couldn't hear or understand as so caught off-guard by his behavior and also because he wasn't making sense. Well, you understand where I'm going here.

I have read a lot about gut health and long before whatever this plague hit me.
Again, thanks for sparking my interest once again.

Believe me, when I saw what was living in those caruncles, I read for days and days. It doesn't look like Dacryoadenitis. I found one or two photos, one on Reddit actually, of all places and another in an article from NIH in Bethesda, MD. I wrote the author about it but didn't hear back.

Thanks for all the wonderful info and for reminding me there is another way. I do so very much need to find a functional, alternative, integrative doc or program. I believe for me it is going to be the only way. And I agree about the NPs. The ones I've seen in the past have been great. At this time, it may even be tough to get an appt with an NP.

Is Ireland your home? Such a beautiful place. I have not been but my husband is part Irish and many of his *11* brothers and sisters have been there seeking relatives, history, beauty, pubs (lol). My brother and sister-in-law went on an 8 day jaunt recently and had just a fabulous time.
Best to you, lovely Patti and thank you so much for caring. I hope you are faring well from all your efforts and from making the decision to take a functional path.

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Replies to "I agree with you, Patti, about func medicine. I have not looked as far into it..."

Glinda,
Thank you for sharing your story. I can only imagine your frustration. My Rheumatologist is brilliant. She in fact did all those tests when I was admitted to hospital back in October. It’s a long story but my diagnosis came about while I was there. I had scans, X-rays and you name it. Initially, not knowing what was going on (and I’m happy to share at some point) with me, they literally turned me inside out, including antibiotics. Once PMR diagnosis had been made, the antibiotics stopped and I was started on prednisone. The odd thing, I did not experience any aches/pains until 2 or 3 days into my hospitalization. But many other things were ruled out including Lymes, ME and other illnesses which are all autoimmune. PMR still not understood re: causation but felt to be viral and probable autoimmune. Given what covid has done to the immune system this all seems likely. I contracted covid in July a year ago and continued to feel poorly over the next few months. My Rheum doc did absolutely everything. I’m relapsing on prednisone at 5 mg and she’d like to put me on Methotrexate. Although I trust her, I am researching risk/benefit. A PET scan is ordered. She is amazingly thorough!
Yes, Ireland is my home although I hail originally from the Boston area. I moved here about 20 years ago.
It’s on the cooler side here but I’m not complaining given what I am seeing in the USA re: places so oppressively hot. I hope you are well otherwise. I’m so glad to have found this forum. Folks are amazing. Stronger together. I believe that! So nice to meet you and share your story re; your husband’s Irish connections. You’d love it here.
I wish you good health.
Patti