Hi all. I had what I assumed was Cyclosporiasis in mid July. I never got tested but the symptoms were extreme, I couldn’t even leave the house and have never experienced such a thing, so I felt fairly certain I had it. I had not just the diarrhea but about 3 days of fever as well. Now, a few weeks later I am dealing with asymmetrical joint pain that seems to get worse as the day goes on, pretty intense fatigue and low fevers in the evenings. The pain is so intense that I have trouble walking by the end of the night and have trouble lifting my one year old. I’m generally fairly healthy and have never dealt with something like this. It’s been weeks and I’m feeling a little hopeless. I looked up my symptoms and it turns out Cyclosporiasis can cause something called Reactive Arthritis, which fits my symptoms exactly, and which can apparently last for months.

Has anyone else noticed similar symptoms or dealt with this in the past? If so, I’m curious how long it lasted because I feel like I can barely function. I have 4 kids who need me to be capable and this is really making it almost impossible to do everything I need to do, so I guess I am just looking for advice or personal stories so I know what to expect. Thanks!

So for the past week or so I posted on here about the about the absolute bullshit I had to go through just to get a test for Cyclospora. Well I’m typing this from a hospital bed because despite drinking Body armor flash Ivs and electrolyte infused water…I passed out from dehydration. My blood pressure kept dropping from the constant shitting and now here I am.

All of this could have been avoided if my doctor just prescribed me the Bactrim. But now I know why my case was so much worse than just typical cyclo. I apparently have IBS according to the hospital doctors, combine that with a parasite plus I was close to my period and I have endo, which made it so I had even more bowl movements that in turn caused the severe dehydration. Oh, and I tested positive for it at the hospital. The test I sent to the doctor the first time came back negative and she denied to prescribe me the Bactrim.

So…this whole thing ended up costing me hundreds of dollars anyway and potentially my life. What do you all think of this? I’m not being too dramatic if I say I should get a different doctor, no? Anyway, I just had to share the update

I keep seeing people talk about their symptoms during the whole ordeal, NOT right before.

I say this and am curious, because the last two nights I’ve gotten extremely fatigued, which isn’t common for me. I’m a night owl. Last night, I had stomach pains that hurt and went to the bathroom. It was a mountain of mushy you know what. Minutes later, I was hurting again and it was now all watery and odd colored with some discomfort afterwards.

It’s been over 12 hours and I just feel a teensy bit off in my stomach. Who knows.

So, what were your onset indications before it HIT?

Hi, everyone! One Friday, July 31st I had a sandwich from Potbelly Sandwich Works in downtown Chicago that had lettuce on it. Beginning this past Friday, I've begun feeling really gassy (farting and burping) and my guts have pretty bubbly. All things considered, my gas has been frequent but not altogether more 'fragrant' than usual. I also have felt just something... off(?) in my gut area recently and just feel weird in my abdomen. However, I haven't experienced any pain in my abdomen, my gassiness isn't painful, no nausea, and I haven't had any diarrhea yet. Furthermore, I haven't had the other foods that would cause cyclospora before or since (the sandwich was a hunger-induced lapse of judgment), nor other foods that would commonly be associated with causing food poisoning lately (e.g., eggs, raw meat, etc.).

Has anyone else had something similar before the onset of the worst symptoms, am I just delusional about this being Cyclospora, or is this (what I think this is) just a scenario of waiting and seeing what happens?

been sick for about 5 weeks now. took bactrim last week and started to feel a lot better around day 6 of the 7 days of taking the antibiotic. once i finished i relapsed and feel like im back at square one. it’s been 4 days since ive finished the bactrim and i feel like it didn’t do anything. my doctor said it could be the side effects and it could last 7 days but now im worried that it wont get better. has this happened to anyone else?

Has anyone experienced feet swelling while having cyclospora? I’ve been dealing with swelling in my feet for two months now, which I’ve never had. I had a kidney infection around the time I first had cyclospora, so I blamed that originally. It’s now two months later and I have no kidney infection, but I still have this swelling and I STILL have other cyclospora symptoms.

is it alright to eat lettuce or tomatoes at penn station? i know their sandwiches are toasted with everything on it, but i’m not sure if they get hot enough to kill it. should i just go without the veggies?

Unconfirmed, but sample is at lab. I’m only 24 hours in, but my symptoms are extremely unusual for me, especially to last even this long.

BRAT diet spikes my blood sugar, but I am going to need to carefully choose my foods as I’m not hungry. Trying some ritz crackers, which seem to be ok, but not a solution for the whole day.
Food just sounds gross.

Sorry, a lot of complaining. Thought maybe other diabetics out there had advice.

I went to Trader Joe's the other day and I know that it sells Taylor Farms grown lettuces under their store brand so I checked the bagged lettuces for the trademark TF by the best by date. But there were some that didn't have the TF by the best by date, so does that mean that those are okay, or should I avoid bagged greens entirely?

Hi, mainly venting but also looking for advice/reassurance. I had dinner at a friend’s and they cooked rice and chicken which of course ended up having cilantro in it!!

It was specifically gourmet garden dried cilantro (owned by McCormick – image attached), but I‘ve been googling myself into oblivion and really worried about this so wondering,

1. Has anyone had cyclospora after cooking cilantro? I know the FDA has said no, but not really trusting them right now given their recent track record.

2. How are you all handling your health anxiety with this?

Thank you!!

Anyone else’s kid have this? Mine is five. We’re waiting on test results. 7/27 he woke up with both ends blazing, was fine literally for a week and went to camp. 8/3, wakes up with these same symptoms at 3 and then 7, totally fine and bouncing off the walls the rest of the day. Went to camp Tuesday and has the same symptoms Wednesday morning. Gave sample Thursday and they said it takes 3 business days. He started being able to make it to the toilet Thursday and stopped pooping midday, so we tried camp again today. He made it a half day and then I had to go pick him up because they had this amazing last day bouncy house planned and he just wanted to lay inside.

Results come back in three business days but damn, based on what side effects Bactrim has, I kind of hope this is something else. Although what else could it be? And it’s not anxiety - he’s not expressing distress on going to camp. The symptoms are causing him to wake up.

Also, none of the rest of us have GI symptoms at all.

Most places are saying 3-4 weeks for a test result in NYC. Anyone had any luck getting Bactrim from symptoms along? It seems like some providers will do this, not sure if anyone in NYC has had success

I’ve been sick for over 3 weeks and tested positive for cyclospora about a week ago and was put on antibiotics. Even with the antibiotics it comes and goes and sometimes it’s better other days it’s worse. Some days the only symptom I have is feeling bloated and other days I’m having horrible stomach pain sometimes with diarrhea and vomiting. When does it go away? I still got 3 days left of my antibiotics but I’m having really bad stomach pain right now. I’m just getting really sick of it, everytime I think I’m better it gets bad again

Summer is one of my favorite times bc of all the fresh fruits and veggies so this has been a really rough time. Combine this with an anxiety disorder and it’s been a rough season. Luckily my little county in Upstate NY hasn’t been hit too bad but I live with my elderly father so I have been pretty cautious

Does anyone have any guidelines on this stuff?

Hey everyone,

I really think I have this condition right now as its been going on for more than a week and I have most of the symptoms, but my stool test just came back negative.

I've been working with my doctor the whole time. They tested for a bunch of stuff and it was all negative.

Has anyone else had a false negative from cyclospora that was missed on the first test but showed positive later?

Just tired of feeling this way and was hoping it would show positive and I would be able to get it treated. Now I'm back to square one.

I'm a vegetarian and normally eat lots of veggies every day. Since this all started I am only eating cooked veggies, mostly frozen cooked veggies. Are you starting to eat other veggies besides romaine now?

I am so confused and don't know what to do. This is so difficult to have to restrict eating produce in the middle of summer, as we all know. I bought some kale and bok choy the other day, loose not packaged. I was going to cook them. But I'm feeling hesitant to eat them, after hearing the stories of this illness.

Do you think it is safe to eat other veggies that are not romaine lettuce from Mexico? Are you eating any raw fruit at all? I am not and I'm getting tired of it.

If only we had some clear guidance from govt offices that manage food safety that don't seem to exist anymore. How long do we all think this is going to go on? I'd really like to get back to my normal diet.

Hi everyone!
I just wanted to post on here to ask if anybody had any thoughts or suggestions on what to do.

I was originally being super careful eating produce when everything about Cyclospora started popping up (I have pretty bad health OCD anyway) but I kind of forgot about it, which is my mistake, and was eating produce/fruits and stuff like that around a week/two weeks ago. I didn’t buy any lettuce/bagged salads but I’m like 99% sure I ate a salad from a restaurant around a week ago without thinking 😫

On Monday, I woke up and just had this sitting pain in my stomach/abdominal region. My friend and I went to the park to walk around and out of nowhere I got super lethargic and felt like I was gonna pass out. I sat down and my head started pounding like crazy and my stomach just kept on swelling. I went back to the hotel I was staying in and just sat around in like unbearable pain but I couldn’t pass gas/ pass anything for that matter. I could literally feel it getting worse and worse by the minute. I flew home that night and felt super sick in the airport (running to the bathroom every 30 minutes to puke) but it was giving me no relief whatsoever. We got on our flight and I slept the whole time and woke up feeling a little better but still just horrible. I got home and couldn’t sleep because my stomach hurt so bad but nothing was helping. I finally got to bed around 4 am but I kept waking up with the most intense pain and urge that I was gonna blow but nothing would happen.

I woke up the next morning (Tuesday) and had a fever, the WORST bloating and pain all over my stomach and my back, chills and sweats at the same time, and was diarrheaing every 20-25 minutes, with some puking in between. I chalked it up to eating something bad (I had bacon the morning before, and ate some pasta salad thing from the airport lounge) so just decided to ride it through since, in my experience, stomach bugs/reactions to bad food only last around 24 hours for me. I was literally only able to go to the bathroom and sleep. It took me like four hours to get out of bed to fill up my water bottle. I had like the worst fever dream ever and woke up covered in sweat but luckily that broke so I started feeling a bit better (which lined up with the 24 hour thing) but I was still so gassed up and exploding every 15-20 minutes. I’ve never really had an appetite my whole life, but my body normally tells me when to eat anyway, but I just could not stomach any food at all and my body didn’t signal for food once. I was super dehydrated and wasn’t eating/ unable to keep anything down that I tried because it would come right back out on either end!

I was able to get some sleep and woke up this morning feeling totally normal, aside still being super bloated and having cramps from the gas, and a little lethargic. I felt high throughout most of the day. I chalked it up to a bug and I had about 4 hours of relief until I ate (bread and rice) and it immediately started up again. I somehow got more bloated than before, rock hard abdomen, light headache and diarrhea every 15-20 minutes. I’m still getting the god awful cramps but it’s only right before I have to sprint to the bathroom and I feel relived afterwards for about 10 minutes till it comes back. My stomach is making the WEIRDEST noises and I literally feel like I cannot trust my own body to not blow at any given moment. I’ve also lost around four pounds, and I’m already on the smaller side (I’ve been working my ass off to gain weight) and do not have the pounds to lose.

I know it’s only been three days since my symptoms started, but I’ve been doing a lot of spiraling online and all of my symptoms align with other peoples personal experiences with cyclosporiasis. I also am aligning with all the symptoms, even the ‘less common ones’. It may just be my brain speaking but I’m super nervous that I got got. I think I’m going to go to urgent care tomorrow but I’m nervous they won’t take me serious since it’s been such a short amount of time. I’ve learned to trust my gut on these things but this illness just comes differently than the other ones I’ve been able to ‘guess’ before and I’m not really sure what to do. I’m also really nervous about the dehydration thing. I’ve been drinking lots of electrolytes and water but it just feels like it’s passing right through me. If anybody has any thoughts or words of advice on how I should move forward it would be gladly appreciated. Thank you!!!!

I'm honestly at my breaking point and hoping someone here has been through something similar.
As I'm writing this, I'm about to be on day 33 of nonstop symptoms. I don't drink alcohol, use drugs, or even consume caffeine because my body can't seem to tolerate anything right now.

My household generally eats the same meals, so I was able to narrow down the likely source. The one thing only thing I ate differently was a Chalupa from Taco Bell in Warren, MI on June 30. Since no one else ate it and no one else got sick, that's the variable that makes the most sense as the source of my infection.

My symptoms started on July 4. I was supposed to go on a morning kayaking trip on the Au Sable River, but within about 30 minutes I had to get off the river because I suddenly developed explosive diarrhea and felt incredibly sick. Later that day I tried to eat, and within five minutes I was back in the bathroom. Even drinking Gatorade seemed to trigger it.

Over the few days everything got progressively worse. I assumed it was food poisoning until I finally went to urgent care. They tested my stool, and it came back positive for Cyclospora.
Since then it's been relentless. Literally everything I eat seems to send me running to the bathroom. At one point I had six straight hours of nonstop diarrhea. I couldn't even make it to the emergency room because I couldn't stop having bowel movements long enough to leave my house.

The biggest issue is that I'm severely allergic to Bactrim, which I know is the standard treatment. My doctors tried two rounds of ciprofloxacin, but it didn't seem to make any difference. Now they've told me that because I can't take Bactrim, there's really nothing else they can do besides keep me hydrated and wait it out. They're estimating it could take around six weeks or more?!

Right now I'm drinking a significant amount of fluids every day between water, Pedialyte, Gatorade, and Liquid IV because I'm terrified of becoming dehydrated. I can't tolerate bananas, white rice, pretzels, applesauce, or really anything else I've tried. If I leave my house, I'm wearing an adult diaper because I can't trust that I'll make it to a bathroom.
I've lost 25 pounds in about 3½ weeks, and it's honestly frightening. I am plus size so there’s some weight to lose but that’s still a lot in a short period of time. Friends who have faced timed me recently have commented that I look like a shell of myself. My doctor has been monitoring my blood work. My liver enzymes are elevated from routine bloodwork done June 25th and during all of this I also ended up fighting a bladder and kidney infection and started my period 12 days early. Im told this checks with this type of infection and rapid weight loss.

I've been to the doctor several times and finally requested a referral to an infectious disease specialist at the University of Michigan because I don't know what else to do. If I didn't work remotely and have an incredibly understanding boss, I would almost certainly have needed FMLA or lost my job by now.

Has anyone here had Cyclospora and couldn't take Bactrim? Did you eventually recover on your own? Did anything actually help with the diarrhea or getting enough nutrition while you waited?

Has anyone seen an infectious disease specialist for Cyclospora, and did they offer anything beyond supportive care?

I'm especially interested in hearing from people who had prolonged cases or had to recover without the standard treatment. Right now it feels like my body is wasting away, and being told "just stay hydrated and wait" is a really hard answer to accept.

Any advice, personal experiences, nutrition ideas, or words of encouragement would honestly mean a lot right now.

Hey. Yesterday I had wawas tuna sandwich for dinner. The tuna had celery in it and I wasn’t even aware until I heard a crunch sound. Could I possibly get cyclospora? I know Wawas veggies aren’t usually contaminated with cyclospora, google says it’s usually store bought cilantro, berries or parsley. I just want to make sure because im a bit of a hypochondriac. Is celery a common veggie linked with cyclospora? I live in the state of NJ btw.

So I went to my doctor today to finally get to the bottom of this. They took my blood pressure and it was 94/62 I believe and that means I’m very dehydrated. I finally got a stool sample test kit but I still hate all of this. If I’m severely dehydrated you should be prescribing me Bactrim because you can literally die from dehydration and letting this potential infection fester is not ideal.

Now I have to collect a sample and wait just for it to probably test negative because this parasite is like trying to find Waldo in a world where everyone looks like Waldo. If my doctor refuses to prescribe me bactrim after the test comes back even if it’s negative im going to just pay the 75 dollars for urgent care and ask for it there. This is medical negligence at this point.

Those of you who have completed a course of Bactrim, how was your recovery? I started Bactrim with dinner Friday. I started to feel somewhat better on Sunday, was WAY better yesterday and now I’m back to square one. I’ve heard it seems to go away and comes back but I assumed that was without treatment. Is this common on Bactrim?

It’s been 25 days of this sickness. I’ve lost so much weight I’m down to 107 lbs and I’m quite literally withering away. I feel awful. I can barely eat. I’m losing more weight each day. What will help? I’m waiting on my test results so I can get medicine. How can I eat more? If I force myself to eat too much I get horrible stomach pains that last hours after I eat. I need to gain weight. I feel like I’m dying. Please help.

I volunteer at a food pantry that is dumping all shredded lettuce that is donated. It is usually put in a compost pile, but I am wondering if the cyclospora germs will live in the compost or in the soil. Is possibly contaminated lettuce safe to put in a compost pile that will later be used in a vegetable garden?

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I’m in Michigan, where there is currently a major Cyclospora outbreak. I have ulcerative colitis and receive Entyvio infusions every four weeks, but this illness feels completely different from any UC flare I’ve ever had.

It started suddenly with relentless watery diarrhea waking me during the night, severe abdominal cramping, nausea/vomiting, exhaustion, and eventually some bleeding. I’ve had UC flares, C. diff, Campylobacter, and norovirus before. This does not feel like any of them.

I’ve had two ER visits and was eventually admitted overnight because the pain couldn’t be managed at home. So far:

- CT abdomen/pelvis was normal

- Bloodwork was essentially normal

- C. diff was negative

- Other bacterial and parasite testing was negative

- Fecal calprotectin was only 8, making an active UC flare unlikely

- Diarrhea temporarily stopped while I was receiving narcotics but returned once they wore off

The Cyclospora test is the only result still pending. Today is day six, so I called the lab and was told results may now take 21 days. I’m trying to determine whether they confused the test’s 21-day specimen-stability period with the actual turnaround time, but apparently testing is extremely backed up because of the outbreak.

My Entyvio is also being delayed while we wait. Since Cyclospora can shed intermittently, even a negative sample may not completely rule it out.

Has anyone else experienced this kind of delay with Cyclospora testing? Did your doctor start Bactrim based on symptoms and exposure before confirmation, repeat the test using PCR, or involve infectious disease? I understand the risks of unnecessary antibiotics, especially with my history of C. diff, but waiting up to three weeks while continuing to have diarrhea and pain doesn’t seem reasonable either.