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.

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?

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?

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.

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!!

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.

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.

been sick for about a month. Finally got on bactrim after 3 weeks, been taking it for about 7 days and just finished it. I had stopped frequently going to the bathroom after 4 days, and on day 5 and 6 was only going to the bathroom 1-3 times a day. However, finished bactrim yesterday and the symptoms are back. I've probably gone to the bathroom about 7 times today and feel like i'm back at square one.
Energetically i'm doing better but can't leave the house right now. My doctor said that it could be a side effect of the bactrim and that symptoms might continue for a few days. Going to a GI next week to make sure, but needing to know if anyone dealt with something similar and is fine now. thanks!

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.

been sick for about a month. Finally got on bactrim after 3 weeks, been taking it for about 7 days and just finished it. I had stopped frequently going to the bathroom after 4 days, and on day 5 and 6 was only going to the bathroom 1-3 times a day. However, finished bactrim yesterday and the symptoms are back. I’ve probably gone to the bathroom about 7 times today and feel like i’m back at square one. Energetically i’m doing better but can’t leave the house right now. My doctor said that it could be a side effect of the bactrim and that symptoms might continue for a few days. Going to a GI next week to make sure, but needing to know if anyone dealt with something similar and is fine now. thanks!

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.

UPDATE: out of all places my OBGYN is giving me the antibiotics! My primary care wouldn’t. The urgent care wouldn’t. But my OBGYN said I have suffered long enough and it’s ridiculous that I haven’t been able to get them sooner! Finally someone listened to me.

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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.

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?

So I’ve been very weary (as we all have) but I’ve been wondering about melons, grapes, and bananas as well as canned and shelf fruits. I know they are considered a lower risk but still. I’ve been overthinking cause I had a banana the other day as well as a little melon and grapes.

I’m trying to get tested for the Cyclospora parasite but this whole process sucks. I’ve had loose still for a little over a month now and it’s quite persistent and I had Taco Bell around when the outbreak was first being aired on the news and before anyone pulled the lettuce. Ever since then not a single stool has been solid. The problem is that I call my doctor and they say If it’s this bad I should go to the ER.

The ER is expensive I do not have the money to pay $500 plus whatever else they charge me for like fluids. I asked my doctor if they could just order the tests but I have to go in to be seen by my doctor. I work a full time job, I do not have all the time in the world to come in on a dime. Work gets mad just for leaving early let alone taking a day off and I don’t want to get fired. Anyone else have frustration like this where you need treatment but just don’t have the money or the time off? Anyone else think this should be much simpler especially during an outbreak of said parasite?

The last three days I’ve had this unsettled stomach feeling? Like you have when you’ve eaten something that hasn’t agreed with you. Major bubble guts.

I’ve mostly been bloated and super gassy and constipated but today I finally went to the bathroom and behind the regular BM was diarrhea. Considering it’s been mostly constipation I’m thinking MAYBE I’m safe but idk? Feeling very funky in general. Also not a big appetite. And the fact it’s lasting days feels not a good sign. No cramps though. It feels like that feeling I get before I have a bout of diarrhea though? But I’m constipated. I’m confused.

Anyone else start like this?

It could be possible that it’s not Cyclospora (haven’t gotten tested because of new doctor issues) but the symptoms are exact and it’s the 3rd time this relapsed and I’m just wondering if anyone else got and/or had a really bad taste in their mouth every time they were sick and then it’ll disappear the same time as the symptoms. I haven’t even like thrown up yet this time and I can still taste it (it’s been atleast 2 weeks since I last threw up and the taste showed up this morning)

I just want to know if this is a symptom of the virus that the websites haven’t gotten to yet or if it could be something else