Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
"Johnson could still see from genetic data that viral particles were being freshly made and expelled for more than a year — many times longer than a typical two-week Covid infection." 😲
@Dakota_150 "Scientists are exploring the possibility that some of the most infectious versions of the coronavirus...came from chronically infected individuals whose immune systems were weakened by disease, drugs or both." /1
Mar 1, 2022 • 22 tweets • 6 min read
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:
1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2
@sfcem_mexico It may help for those experiencing co-morbidities of ME/CFS to find specialists who may be able to help some symptoms:
1) Cardiologist to test for POTS w/NASA Lean Test or Tilt Table; sometimes treatment for POTS helps (sometimes it doesn't); /1@sfcem_mexico 2) Neurologist who can diagnose Small Fiber Neuropathy w/skin biopsy; ideal if they understand Autoimmune Autonomic Dysfunction;
3) Rheumatologist to investigate autoimmunity, particularly Sjogren's; sometimes treatment helps (sometimes it doesn't); /2
Feb 5, 2022 • 15 tweets • 6 min read
#Endometriosis is now considered a systemic disease rather than a disease predominantly affecting the pelvis. Endometriosis affects metabolism in liver & adipose tissue, leads to systemic inflammation, & alters gene expression in the brain..."
sciencedirect.com/science/articl…#Endometriosis affects 5–10% of women of reproductive age...Despite this high prevalence, disease recognition is inadequate & diagnosis time ranges
from 4 to 11 years, with 65% of women being initially
misdiagnosed." 65%!! /2