@legallyred - I'm so sorry; that's awful! I'm glad you ended up finding your answers though, and I hope you're doing well now.

Hmm, where to start? At the end of May I went hiking in the woods in Missouri, sans bug spray (idiotic move, I know), and developed a rash on my chest several days later (it initially looked/I initially thought I had been scraped by a tree branch or something, but then the area around it developed into a slowly expanding red circle). Not itchy, not painful -- I just ignored it. Near the end of the week, I developed a really sore throat, nasal drainage, a headache, chills, extreme fatigue, a slight cough and decreased appetite. Went to the doctor, figuring I had strep again (had a recurrent or chronic case I couldn't kick for the first half of last year) or a sinus infection (which I've struggled with all my life), and thought I'd asked about the rash while I was there too. Strep test was negative, and the doctor actually seemed more concerned about the rash then the sinus stuff. Her office note officially diagnoses pharyngitis, cellulitis and rhinorrhea, and she started me on Sulfamethoxazole-Trimethoprim. Cool, whatever, I head off into the sunset and take my first dose. About an hour later, I develop INSANE urinary frequency, being barely able to hold it for 10-15 minutes before I have to go. After about an hour of this, I called both the doctor's office and the pharmacy (I couldn't even hold it while I was on hold for the pharmacist -- I had to put it on mute and pee, which I've never done before) and asked if this could be a side effect; they said no, and told me to "keep pushing fluids". A miserable night ensues; in addition to everything already mentioned, I get these like crazy swings between hot/cold and when I eventually take my temperature it's 100.8. I take a Tylenol and suffer agonizingly until the Urgent Care opens the next morning (a Saturday) at 8am. The on-call doctor I phone again reiterates this isn't a reaction to the Sulfa and tells me to visit Urgent Care, so I begin to think maybe it's another kidney stone (I've had two prior). The doctor at Urgent Care says "it's an allergic reaction to Sulfa" and my rash is poison ivy and sends me on my way. The on-call doctor is skeptical of this and puts me on Doxycycline to replace the Sulfa for the rash. The peeing does improve somewhat by that evening (can maybe last 45-an hour between pees). Meanwhile, my rash has been expanding (the doctor had told me to draw a circle around it in permanent marker and call if the redness expanded beyond the marker after 48 hours on the antibiotic) so I return on Monday and they draw blood work (High WBCs, Neutro # and slightly high CRP). That Friday I'm still complaining of urinary frequency (every 1-2 hours when awake, 3-4 when trying to sleep), fatigue, chills and now nausea too. Doctor does a pelvic exam, says there's a lot of discharge, and puts me on an antifungal for an acute vaginal or yeast infection (this later comes back negative).

So, I just realized my "brief summary" is not going to be all that brief lol. To make it simple, I suppose since then everything's stayed pretty much the same -- I have alternating periods of low-grade fever (peaks at 99.7-100.8, not even considered officially a fever by some), extreme fatigue, nausea/lack of appetite, odd bowel stuff (some mucous during flatulence, some constipation, some unusual chunks of red or white colors), hot flashes where I get super hot all over and flushed, still the vaginal discharge/redness and some discomfort, and a variety of other random but mostly temporary things like a swollen tongue, bloating, skin sensitivity, etc. I've been on two months of Doxycycline for potential Lyme (initial Western Blot was reactive to one band, most recent Western Blot increased to three -- neither of which are the five the CDC requires for official diagnosis); several courses for anti-fungals because everyone who does a pelvic exam thinks I have a yeast infection (though the test has only come back with "slight growth" once); several meds for overactive bladder; multiple supplements and a week and a half of Tetracycline that I'm not even sure what it was supposed to be for, just that the test eventually came back negative so they stopped it. The urinary frequency is a matter of debate -- I've been trying to hold it longer, and I can last 2-3 hours now, which the urologist said cool, that's normal, you're all good, but what bothers me is A) this holding it is painful where my bladder feels uncomfortably full, and then when I do go it's hard to start and burns slightly -- which worries me that it's not healthy; and B) I find the idea that I could have a camel bladder one day (I literally would go all day at work without using the bathroom -- I know, I know, but I just get really into my work), and then suddenly can barely hold it to make it every 2-3 hours? Even if it was an aging thing, usually it would come on gradually, not just one day you can hold it all day and the next you can barely hold it an hour. So, it's up to you whether you agree with the urologist and consider it an improvement or "normal".

Lab work wise, nothing is insanely abnormal. My CRP has been elevated the whole time, peaking at 2.8 (max in reference is 0.9) near the end of June and alternating between 2.2 and 1.5 in measurements since (could be something as innocuous as gingivitis, my primary care said). ESR is elevated, peaking at 33 mid-July (max in reference 20) and apparently on a downward trend since (last measurement at 22 mid-August. MCH consistently but only slightly low; RDW has been increasing and was flagged high at last measure on 8/24 at 19.3% (max reference is 14.5%).

Endocrinology: Low Luteinizing Hormone (

@legallyred, Thank you for posting and welcome to Mayo Clinic Connect. I'm so very sorry that you and your husband went home without the help you expected from Mayo upon arrival. Stories like this are hard to hear and I'm disheartened that your experience wasn't a good one but very glad to hear you found someone that is advocating on your behalf. That's wonderful to hear.
On the flip side, I just spoke with a patient who has had 14 surgeries at multiple facilities by qualified surgeons all ending with the same outcome- the patients issues were not resolved. They called to tell someone about their "life changing experience" that they had at Mayo- the surgeon they consulted with here at Mayo Clinic found something that the other 14 didn't. At the end of the day, I agree with your advice about taking the time to find a doctor that believes in you and wants to help you find a solution. Advocating for your own healthcare should be top priority for everyone. Keep looking for a doctor that fits your needs- you will find them, it just might be after the 3rd, 4th or 8th interview.

Also, to be safe, I edited your post to remove your personal email per community guidelines. Please, by all means, feel free to use the private messaging function on connect to communicate with other members.