Experience with Lupus?

[jryoung]

Some good advice here so far, auto-immune issues are tough, especially lupus. Something to consider to start is an elemental diet, unfortunately they are not fun, but they can really work to calm a gnarly AI flare.

Physicians' Elemental Diet™ Dextrose Free | Integrative Therapeutics®

Physicians' Elemental Diet™ Dextrose Free is a medical food formulated to provide dietary management for patients who have limited or impaired capacity to digest, absorb, or metabolize ordinary foods or certain nutrients. Physicians' Elemental Diet Dextrose Free is a strictly hypoallergenic...

integrativepro.com

Elemental Diet: What it Is & How it Works

The elemental diet is a medical protocol prescribed for certain gastrointestinal conditions. The diet offers complete nutrition in a “pre-digested” form.

my.clevelandclinic.org

Ozone therapy can be incredibly beneficial as well, and we use it in most of our auto-immune patients. You can google "ozone therapy NIH" for some studies.

Oxygen-Ozone Therapy for Reducing Pro-Inflammatory Cytokines Serum Levels in Musculoskeletal and Temporomandibular Disorders: A Comprehensive Review - PMC

To date, the application of oxygen-ozone (O2O3) therapy has significantly increased in the common clinical practice in several pathological conditions. However, beyond the favorable clinical effects, the biochemical effects of O2O3 are still far ...

pmc.ncbi.nlm.nih.gov

 

[GHOXP]

I will mention wrist pain. That’s one of the first things I had too, along with the Raynauds and skin oddities. Finally woke up one day from a long night shift and couldn’t move at all.

 

[Bullshot]

We had her rheumatologist appointment today at a great pediatric hospital/specialty care facility (I can’t believe it takes weeks to get in, and that was “fast”). Not unexpectedly, the doctor wants to do a bunch more tests. In fact she wants to re-do all the same tests and then order a slate of new ones too. She said she is a little confounded to her how my daughter’s initial antibody screening came in so high but some of the later autoimmune / antibody / proteins (lupus- related tests) though still positive, are not as extreme on the charts as that 1st round screening test was and thus don’t seem to fully explain it. She evaluated my daughter’s strength, coordination, balance, skin, pains, descriptions of other symptoms very carefully, particularly the severe headache issues, fatigue, and Reynouds syndrome in her hands. She is having us go see a nueurologist for daughters ongoing migranes (still twice weekly-ish) but also wondered aloud if there may have been separate involvement with a viral meningitis or similar acute infectious illness as the headaches and neck pain had been chronic for several weeks prior to the 1st bloodwork. Those everyday debilitating headaches are not currently present so there has been a big change for the good with that.

But clouding the issue, daughter had caught a bad cold recently and was tested for flu/covid and although negative for those, she tested positive for a coronavirus of some other type. So the dr wants to wait a few more weeks for the next round of blood tests to allow any lingering immune response to that virus to subside. Finally, she is adding an infectious disease panel including tick-borne illnesses, just because “it won’t hurt to rule some other things out at the same time.”

So right now, we are remaining optimistic that any autoimmune issues including the Reynouds may be on the milder side if her symtom status stays where it is, or best case, maybe that the issues were partly related to another undiagnosed illness that may have since resolved or that can be treated in parallel. So although the doctor brought up it is possible it is lupus, she said that my daughter’s symptoms and tests are a bit too inconsistent for her to say that is “probable” at this time. I’ll definitely take that ray of sunshine.

So now my daughter seems happy and far less anxious now that she knows she is not in immediate high risk. And we had a nice lunch at Panera after the appointment before heading home. Thanks again to those who are following this. Your prayers are clearly helping!

 

[Wildabeest]