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[quote=Anonymous][quote=Anonymous][quote=Anonymous]I’m following this.  My 19 year old has had fever (100-101) since September 15th.  We have seen infectious disease, pulmonology, and oncologist.  No one can figure it out.  It’s so frustrating 🙁[/quote]

OP here.  So sorry to hear this.

I'll throw out a long shot, but I guess you are in long shot territory already.  There is an uncommon syndrome associated with Familial Mediterranean Fever called protracted febrile myalgia syndrome.  It is a vasculitic complication of FMF characterized by persistent fever over weeks, typically accompanied by joint or muscle aches and pains.

Typically, FMF already is established in someone who gets protracted febrile myalgia syndrome, but there is literature out there where is it the first manifestation.  For example: https://pubmed.ncbi.nlm.nih.gov/32232210/  (I spend a lot of time reading Turkish medical literature; Turkey leads in all the research for this.)

I think it is worth investigating in your case--do not be put off if all the nonfever symptoms listed in articles don't line up with your 19 year old or if the length of fever is longer.  FMF symptoms and duration can be all over the map.

There is also TRAPS, formerly called Familial Hibernian Fever, another periodic fever syndrome in which typical fevers can last months.  While much rarer than FMF, it seems to fit your situation better. Genetic testing for periodic fever syndromes will cover this as well.

Getting genetic testing can be very expensive, and insurance companies balk and spin out agreeing to paying for it for months.  Everyone on the Facebook group I have joined does self-pay through Invitae.  Each panel is just $250, and I believe you can have one of their doctors order it by telehealth for $125.  (We had difficulties getting a doctor to agree to go through the steps to order it through the company, but a sympathetic ENT finally agreed.)

This is the best panel to ask for--it covers primary immunodeficiencies, as well all the periodic fever syndromes.
https://www.invitae.com/en/physician/tests/08100/#info-panel-disorders_tested

Would be interested in hearing how exploring this goes for you.[/quote]

Thank you!!!  He has another follow up next week.  I’ll ask him to mention it to the doctor.  Another possibility is COVID long haulers.  But then, what’s the treatment?

They are looking at auto-immune disorders again next week.  It’s really frustrating because he feels crappy.  [/quote]

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