YANMD but..help me and my MD figure out this fever
September 14, 2021 9:11 AM   Subscribe

My doctor is officially at loose ends with this as is my immunologist. I have their blessing to Ask The Internets. Why might a person have a fever or elevated temperature for 2+ years? Especially when paired with extreme fatigue but normal blood work. Has this happened to you or someone you know? What further tests or avenues might I investigate? What on earth is going on here and how can I make it better?

Here are lots of details as I'm not sure which might be useful.

Roughly two years ago, I developed a fever or elevated temperature along with extreme fatigue and lack of appetite. Through the investigation of the fever, I was diagnosed with Common Variable Immune Deficiency and now do weekly plasma infusions which have made me less prone to infection, but haven't addressed the fever and fatigue.

I have had a complete infectious disease work up as well as a rheumatological work up. My blood work is always normal. If you looked only at my labs I would seems totally healthy.

For the last two years my temperature has been between 99.5 and 100.7. It never goes higher than that. Prior to getting sick it was 98.7 unless I had an active illness.

Prior to my immunological illness being diagnosed, I spent a year with one virus after another including mono. My doctors wonder if I have chronic fatigue but my inflammation levels are so low that they repeated the tests thinking there had been an error.

I am always exhausted-- I've cut back to part time work. I've lost 20+ pounds. I have very little appetite. It's hard for me to fully participate in my family life with my partner and kids.

I have good health insurance and am followed by both my family doc and an immunologist but everyone is pretty much out of ideas at this point and I am feeling something very close to despair about feeling this way forever.

Any ideas, theories, suggestions, or anecdata would be wonderful.
posted by jeszac to Health & Fitness (16 answers total) 5 users marked this as a favorite
Bone marrow sample to check for blood cancers?
posted by praemunire at 9:30 AM on September 14, 2021 [3 favorites]

Best answer: Is the elevated temperature persistent, or episodic? Have you worn a temperature tracking device to plot its continuous course for any period during those 2+ years?
posted by late afternoon dreaming hotel at 9:31 AM on September 14, 2021 [2 favorites]

Parasites? They can cause fatigue and weight loss.
posted by jpeacock at 9:33 AM on September 14, 2021

Fever of unknown origin (FUO) comes to mind as a helpful search term. I imagine you've already explored that, but my mind also goes to the possibility of persistent exposure to pyrogens (in the form of, for example, a medical device that has been implanted sometime prior to those 2+ years). If the fever is continuous rather than punctuated I would look more into the latter, or other ways in which you may be being exposed to fever-causing substances.
posted by late afternoon dreaming hotel at 9:37 AM on September 14, 2021 [1 favorite]

IANAD. You say you've had a lot of tests -- have they looked at your thyroid in detail? As in, not just comparing it to normal benchmarks, which occasionally miss diagnosis as unhealthy levels can be different between individuals? Some people go long time before being diagnosed with things like hyperthyroidism because they appear "healthy" in their bloodwork. Has your thyroid been scanned or have you had a radioiodine uptake exam to check its activity?

Are you taking regular meds for any of the conditions you've dealt with that could possibly be causing this as a side effect?

If you're AFAB I would also ask for tests to check your reproductive system which might be throwing your hormones out of whack.

On preview, seconding the bone marrow test, just in case.
posted by fight or flight at 9:39 AM on September 14, 2021 [4 favorites]

Gut flora might be something to look at too. Work on making your gut happy in addition to all of the above. It couldn't hurt & at least maybe you could get your appetite back.
posted by bleep at 9:44 AM on September 14, 2021

Another thought: have you been tested for Lyme disease?
posted by fight or flight at 9:46 AM on September 14, 2021 [1 favorite]

Best answer: I'm alarmed that your team is writing off ME/CFS simply because of low inflammation markers. There are no diagnostic tests for ME/CFS, the link between it and inflammation are at this point still pretty hypothetical (and in those hypotheses, it is unclear which comes first anyway). Low inflammation excludes some autoimmune stuff and suggests that methotrexate or monoclonal antibody treatment probably wouldn't help, but I'd push back very hard on the assumption that you can't possibly have post-viral syndrome/MECFS just because of that.

Obviously that only helps so much because there's not a lot of treatment options for it but I just think it's a red flag that they're excluding it.
posted by Lyn Never at 10:16 AM on September 14, 2021 [7 favorites]

Best answer: My understanding is that CFS/ME is now being viewed increasingly as a central sensitization disorder rather than an autoimmune disorder, so the lack of inflammation should not rule it out. I don't have good sources for this, but the rheumatologist who diagnosed me with fibromyalgia (another CSD) explained it very well to me. You may want to see a rheumatologist who is familiar with fibro and CFS/ME.

I'm sorry you're dealing with this. Unfortunately, most of the people I know with long-term fatigue have had similar issues finding out the cause and getting effective treatment. You may also want to seek out some of the COVID long-hauler groups. Your timeline means this is most likely not COVID-related, but there is a whole online community out there of people dealing with post-viral fatigue.
posted by lunasol at 11:53 AM on September 14, 2021 [1 favorite]

Best answer: I notice that the onset of this coincides roughly with the birth of a child.

Recently a lot of work has been done associating maternal autoimmune problems with the persistence of fetal cells (microchimerism) in the mother after birth, including thyroid problems, scleroderma, rheumatoid arthritis, and a range of other autoimmune issues.

And FWIW, here's a study suggesting an association between microchimerism and post-natal depression.
posted by jamjam at 12:08 PM on September 14, 2021 [3 favorites]

Response by poster: This is so helpful everyone. I will follow up on my many of these ideas. Please keep them coming. And yes, the fever is always present. And @jamjam it did, indeed, began following a very severe and unexpected postpartum depression following the birth of second child.
posted by jeszac at 12:46 PM on September 14, 2021

My first thought is that thyroid problems (specifically, hyperthyroidism / Graves’ disease) need to be ruled out. Definitely ask specifically about getting your thyroid levels tested.
posted by aecorwin at 2:50 PM on September 14, 2021

Best answer: For CVID the advice is a bit more specialized (a partner has a similar PID that affects antibody production).

Agree that you should be getting a very thorough infectious disease workup, including for things like fungi and parasites and more quiet diseases like endocarditis. And get a dental check. You'll be particularly prone to low-lying persistent infections with CVID. See if your doctor will okay a broad-spectrum antibiotic to see if it helps you kick something permanently. (Thinking an atypical sinus infection or something similar.) And get chest x-rays and lung function tests.

(You know that the rules for antibiotic use are different for you; you should be open to using them to help your immune system kick things -- don't be shy about asking for a course of antibiotics if you're having symptoms of infection, which you are.)

Plasma (what kind?) and similar treatments for immune deficiencies can often cause mild immune symptoms like this. You can fiddle with the timing and dose of infusions to get your quality of life as good as you can.

Generally -- get a second opinion from another immunologist. There are a lot of things you can do with treatments for CVID that can affect quality of life; the plasma treatment may not be right for you. Some people do better on higher volume infusions, smaller infusions twice a week, etc. You should probably be considering an antibiotic assist at this point. Etc. You might benefit from an immunologist who is more proactive with quality of life issues.
posted by Rock 'em Sock 'em at 5:39 PM on September 14, 2021

Best answer: Second and third opinions. Not all doctors are created equal, and even if they were, helpful to have another set of eyes and perspective on the issue.
posted by masters2010 at 6:13 PM on September 14, 2021

Best answer: This sounds like textbook ME/CFS to me and to my knowledge there is not any existing guideline for diagnosing it by looking at inflammation markers, so it's possible you could still have it without testing higher for inflammation. I would get another opinion or two if you can, and consider getting connected with advocacy groups for ME/CFS or fibro. Those patients may have some useful advice for you.
posted by zdravo at 11:09 AM on September 15, 2021

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