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jonsblond's avatar

What might my doctors be missing? I’ve had a fever for nine days and they still don’t have an answer?

Asked by jonsblond (43940points) 3 weeks ago from iPhone

My symptoms are fever, headache, loss of appetite, diarrhea, muscle aches, nausea, skin rash, tiredness. I’ve now lost ten pounds since this started.

I went to the ER on day 4. The CT and chest X-ray showed no problems and I tested negative for Covid, flu and RSV. This was a Saturday. The doctor told me to call my doctor Monday morning.

My doctor got me in Monday afternoon for bloodwork. She spoke with the other doctors there and they were are leaning towards West Nile virus but she said they’d reach out to infectious disease to see what they might be missing. I was then called back in on Tuesday for more bloodwork. They had to check for measles and some other things. This day I had to enter the building through their back door and they put me in the closest room. A woman wearing gear like Dustin Hoffman in the movie Virus showed up to take my blood. She said some of my blood was going to the Mayo Clinic and Utah, so it might be a while for results.

Results are slowly trickling in each day. I’m continuously checking MyChart for results. I’m beginning to lose my mind. Everything is showing up negative. No Hep A,B, or C, no parasites, no HIV… They are literally testing for everything. At this point I was hoping for a positive West Nile so I could just have an answer. Well, this morning that came back negative. I’m at home in bed waiting for more results.

Some of my bloodwork showed I have inflammation of the liver but the CT didn’t show any signs. What the heck is going on?

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49 Answers

Zaku's avatar

Do you know how your calcium levels are?

KNOWITALL's avatar

Did you ever have Covid? Won ts going around again.

Yikes thats scary. My great auntie had symptoms and they ended up calling in CDC. She died a week later and no cause was ever found.

jonsblond's avatar

@Zaku they are where they should be.

gondwanalon's avatar

Sounds like it would be a good idea to test your feces for Salmonella, Shigella and parasitic ova and protozoan parasites.

chyna's avatar

I have no advice or guesses, but it sounds like everyone is taking you seriously and that’s a plus. A lot of times, doctors blow you off at first.
I hope you find answers soon.

jonsblond's avatar

@gondwanalon No parasites were found.

@chyna I am very grateful for that!

smudges's avatar

@jonsblond My thinking is also a parasite. Parasites can be in the feces but not the blood. Did they specifically check your stool?

canidmajor's avatar

A lot of your symptoms are consistent with Long Covid.

jonsblond's avatar

@KNOWITALL I’ve had Covid twice. I’m currently negative. That was checked at the hospital.

@smudges they have not checked my stool.

jonsblond's avatar

So it looks like Utah tests for infectious diseases and Mayo Clinic tests for cancer?

jonsblond's avatar

My Absolute Lymphocytes, Absolute Neutrophils counts are low. My AST and ALT are very high.

jonsblond's avatar

I appreciate all the brainstorming! Thank you.

smudges's avatar

I typed 9 days of fever, headache, loss of appetite, diarrhea, muscle aches, nausea, skin rash, tiredness into google and got 3 hits of viral gastroenteritis.

Based on your high ast and alt, I found this:
Viral hepatitis, such as hepatitis B, C and D.

Autoimmune disease caused by malfunctions of the immune system, such as autoimmune hepatitis, primary biliary cholangitis and primary sclerosing cholangitis.

Nonalcoholic fatty liver disease. This means there is too much fat stored in the liver cells and can be linked to obesity and diabetes. As the name implies, this disease can be independent of alcohol use.

Genetic causes such as the inherited condition alpha-1 antitrypsin deficiency or hemochromatosis.

https://mcpress.mayoclinic.org/women-health/my-liver-enzymes-are-elevated-now-what/

p.s. I enjoy searching for medical answers – I was a lab tech.

RocketGuy's avatar

@smudges – good search. Here’s an off the wall one – tainted, canned coffee: https://www.yahoo.com/news/urgent-coffee-recall-fda-warns-130824696.html

Dutchess_III's avatar

Oh my God. Oh honey. They’ll figure it out.

You Jellies are in way over my head. But I must contribute because I, too, am a Jelly; take a HPT.

Pandora's avatar

Did they check for lyme disease? Even if you were ever treated for it in the past, it seems to be the disease that can keep giving.

seawulf575's avatar

I’m not a doctor but some other things to look at (though it sounds like your doctors are looking at everything) might be Addison’s Disease, possibly a small perforated bowel, and I believe there are some cancers that can bring on some or all of the symptoms. Obviously not the answer you would hope for.

Was there an order that the symptoms appeared? Where is the rash? What were you doing the day before the first symptoms appeared…what did you eat or do?

Caravanfan's avatar

Poking my toe in and then will bug out. I just want to reassure you that it looks like you are getting good care. Sometimes these things can be hard to find.

flutherother's avatar

Possibly something carried by ticks or mosquitos or a bacterial infection such as Lyme disease which is relatively common in Wisconsin.

Dutchess_III's avatar

Surely they’ve tried antibiotics…

jonsblond's avatar

@flutherother That was their first guess and I was bit by a mosquito a few days before I became ill. My test for west Nile came back negative this morning. Lyme disease also came back negative.

@seawulf575 First symptoms were fever, headache and body aches, then diarrhea, loss of appetite, and finally rash.

There’s still bloodwork out there that we’re waiting for results. I’m assuming those are the one in Utah and at Mayo. My doctor has a follow up with me in the morning since I’m not improving.

jonsblond's avatar

I just remembered another odd thing. My upper eyelids became very puffy Monday morning. The area above my upper lip was slightly swollen as well. My doctor witnessed this. My eyes became blurry because of the swelling. Yesterday and today there’s been a big improvement but now my eyelids are itchy. So weird.

Pandora's avatar

@jonsblond This explains why Lyme disease isn’t always detectable. But looking online it looks like you have most of the symptoms of Lyme disease and it seems more probable than some far-out disease. Unless you have some unusual disease that exists in your family or travel a lot, whatever it turns out to be I hope it’s nothing serious. And you will recover soon. I mean short of cancer, I don’t know of too many diseases that are common enough that can cause these many symptoms but then I’m not a doctor either. There is a wide range of autoimmune issues that can wreck a person but most are inherited and you may know several family members who have them.

snowberry's avatar

I posted this in another thread years ago, but I’ll put it here again. The Lyme disease pathogen lives in the synovial fluid of the joints. It only shows up in the blood when it’s traveling to infect other joints. This explains why it’s so hard for them to find Lyme disease pathogens in the blood. It’s not there! It’s in the joints!

So if you want a sure diagnosis of whether it’s Lyme disease, have them test the synovial fluid of an affected joint. Of course insurance isn’t likely to test synovial fluid or pay for the procedure to take a sample, but that’s insurance for you.

Blackwater_Park's avatar

This really sounds like a tick-vector sickness like bebesiosis or something like it. I hope they’re testing for things like that. It takes doctors a while to figure out from what I have heard.

jonsblond's avatar

Hopefully I’ll have some kind of answer soon. I have a notebook full of questions for my appointment tomorrow thanks to you all.

janbb's avatar

Best of luck, @jonsblond ! Hugs.

MrGrimm888's avatar

I have to jump on the tick/mosquito wagon.
Some of those problems can be very difficult to detect, even with testing.

The ALT/AST values are nothing to be taken lightly.

It does sound like you are in good hands, but maybe you should contact ID (infectious disease,) or see if a Hepatologist could review your case, to make sure your liver is closely monitored.

For what it’s worth, you will be in my thoughts, and you have my unwavering support.

Peace and love.

gorillapaws's avatar

There’s nothing I can add that a team of professional physicians with your medical records and test results couldn’t. All I can do is send you heartfelt best wishes for a quick diagnosis and solution. Hugs.

JLeslie's avatar

Did they test for Dengue? Were you in a warm state or out of the country in the last month?

Tick born illness is more likely in WI.

Also, auto-immune possibility, although I think autoimmune is often actually caused by something not yet identified.

JLeslie's avatar

Dengue is in WI this year, just looked it up, but my guess it is mostly people who have traveled, but maybe mosquitoes up there have it now? Here’s some info. https://www.cdc.gov/dengue/data-research/facts-stats/current-data.html

Kardamom's avatar

I’m so sorry you are going through this.

I am thinking like @JLeslie that it could be dengue fever considering the mosquito bite:

https://www.who.int/news-room/fact-sheets/detail/dengue-and-severe-dengue

Or possibly Long Covid (you would not test positive after a certain amount of time has passed since you’ve had Covid)

https://www.yalemedicine.org/conditions/long-covid-post-covid-conditions-pcc

I hope they figure it out soon, and that you get some relief.

canidmajor's avatar

I hope you feel better soon, @jonsblond. If you are so inclined, please let us know when you are better and what it is.
<<hugs>>

SnipSnip's avatar

I do not think anyone here knows what is going on, especially when you already have a community of medical folks working on it who have yet to come up with a diagnosis. I’m really sorry you are having such a hard time. God bless.

JLeslie's avatar

^^Never a mistake to ask friends when it’s a mystery. You never know where help will come from. Doctors aren’t Gods, and medical science doesn’t know everything, which is partly why doctors can’t be expected to be perfect.

You might want to read How Doctor’s Think. I found an excerpt here if you are interested in reading a chapter. It’s written by a doctor. https://books.google.com/books?id=RjY2iwqIuIwC&pg=PA2&source=kp_read_button&hl=en&newbks=1&newbks_redir=0&gboemv=1#v=onepage&q&f=false

jonsblond's avatar

@SnipSnip I know no one knows but it’s nice to know people care. I’m so lonely right now being stuck in bed and I’m too tired to chat on the phone. Getting well wishes from people like you sure does help because at this point I’m very depressed. (Thank you)

Dutchess_III's avatar

♡♡♡♡

LadyMarissa's avatar

I have been tracking this for a while now & your symptoms fit…especially the rash & fever. It could be Dengue. We catch it from mosquitoes & I seem to remember you speaking of camping a lot. They are suggesting using bug netting if you’re going to be camping out. WI is a little far north for it to have spread, but you just might want to bring it up with your doctor. If any bleeding begins to occur, you definitely want to get to your dr right away even if you saw him yesterday!!!

LifeQuestioner's avatar

Before I finished reading all the responses, I was wondering about Dengue myself, especially with the aforementioned mosquito bite. It’s definitely worth being tested for if they haven’t already.

But I’m thinking of you and hoping that your depression eases up. In the hospital for 11 days and then now I’ve been stuck at home for 6 weeks. I’ve had some people stop by every once in awhile, but really it’s the conversations on sites like these that have kept me going. There’s been a couple times I’ve been feeling very down so I understand. Who knew I wasn’t as much of a homebody as I thought.

JLeslie's avatar

@jonsblond Any news or relief yet? Hoping you are starting to feel better even if you haven’t been able to get a diagnosis.

Are they just calling it idiopathic fever? Seems to me with all of those symptoms it’s not just out of nowhere.

jonsblond's avatar

I had a horrible night last night. My rash was very itchy and I became short of breath. I think I was on the verge of a panic attack but I finally calmed down. This morning my rash looks a little better and I think my fever broke. I thought the same thing yesterday but my fever returned in the afternoon. It’s almost 2pm my time and my temperature is normal without the help of meds.

I have an echocardiogram scheduled for Monday morning. My doctor is concerned about myocarditis. We’re still waiting for several tests to come back.

The doctors are focusing on viruses first. Next would be autoimmune diseases, then cancer.

JLeslie's avatar

@jonsblond Where on your body is the rash?

janbb's avatar

This is just anecdotal, not a diagnosis but I have a friend who had Dengue twice and it was miserable.

Dutchess_III's avatar

Oh @jonsblond…. :(. God I hope they figure it out.
Hell I’m ready to pack you off to the ER.

Pandora's avatar

In the meantime till you know what it is, you would benefit a great deal by lowering your body temperature. Whenever I had fevers, keeping cool towels on my forehead and the inside of your arms and the back of your knees help a great deal. Especially the ones on your head. Putting a cool wet rag over your eyes will also help. Keep a bucket of water with ice near the bed and put face towels in them. Just bringing down the temp in your head will make you feel tons better. Its not a cure but it always has helped me when I would be recovering from something like the flu and felt like total crap. Get plenty of sleep.

LifeQuestioner's avatar

@jonsblond as far as the itching goes, are your kidneys okay? When you talked about how you felt really itchy, I thought about one time when my kidney numbers were really poor. I have kidney disease but in that particular case it was because I had a UTI and didn’t know it. And one of the symptoms of kidney disease can be really itchy skin. But if the rash is only in one spot and that’s the only place your skin is itchy, that’s probably not it.

Dutchess_III's avatar

I. Can. Not. Wait. For. Monday.

jonsblond's avatar

Hi everyone. It’s been a month since this all began and I’m feeling better. I didn’t get my appetite back until a week ago but I’m still not getting enough calories as I should. I guess because my stomach shrunk? I’m hungry but my stomach can only handle a little at a time. I lost 14 lbs in 4 weeks.

My doctor still doesn’t know exactly what was wrong. She’s sticking to something viral. Dengue was tested for and that was negative.

The echocardiogram showed an unrelated issue. I have mild to moderate aortic regurgitation. I had an echo ten years ago and it showed as mild, so that has changed. I’ll now need to get an echo every two to three years.

I had more bloodwork done today and everything that was of concern earlier has improved. My doctor suggested Vitamin D and Zinc to help boost my immune system.

I hate not having an answer but I’m grateful for feeling better. This ordeal was scary.

JLeslie's avatar

@jonsblond Thanks for the update. My mitral valve regurgitation sometimes doesn’t show when my blood pressure is normal. I think my high BP is really taxing my heart. If you have high BP getting it under control might help. Mine isn’t controlled well.

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