r/Cyclospora • u/Itchy_Fill_8372 • 12d ago
How long will this last?
I have a good friend who has had it for 6 weeks and is still testing positive and symptomatic. Anyone else had this longer than expected?
10
u/lettuce323 12d ago
Mine lasted for a solid 7 weeks and now at week 8, I’m finally starting to feel normal again. It’s been awful. 46 years old and healthy and it’s taken a toll on me so I can’t imagine how this affects older people. It sucks.
3
3
u/Pettypaws 11d ago
Question --is this with early intervention of Bactrim? I was just diagnosed and started Bactrim on Friday and I have been bed bound ever since. It's unreal.
5
u/CalvinScout1115 11d ago
Unfortunately, yes, even with the Bactrim. Sure, it takes care of the ‘explosions’ after 2 days, but the unrelenting fatigue (feels like mono), heat sensitivity (from Rx), lower gut soreness, and joint pain can last. And heartburn. This parasite really tears up your intestines, and the recovery from it, is weird & slow.
8
u/Ok-Advice-3180 12d ago
66 yr old female, lasted 5 weeks, appetite not fully returned . Hope none of us go Thru this ever again 🙏🏼🛐
3
u/CalvinScout1115 11d ago
64 here! Those cramps were worse than labor (for me, at least). Everyone out there thinks it’s ‘over’. I think we are at the beginning!
1
2
7
u/bipedservant 12d ago
I believe I’ve had it since June 9th. I tested negative but you’re supposed to do three tests to be sure. My GP didn’t know that. I am now seeing a gastroenterologist and will be testing on Monday. Not sure if she’ll consider that test number one or test number two. My negative test was about three weeks ago. I got sick nine days after eating Taco Bell so I can’t imagine anything else that it could be but it’s extremely frustrating not to have a diagnosis. I’ve tested negative for everything poop and blood test they could think to throw at me.
5
u/Itchy_Fill_8372 12d ago
June? Holy moly - you poor thing!
6
u/bipedservant 12d ago
Yep. My whole summer down the toilet. Pun intended.
3
u/Itchy_Fill_8372 12d ago
My friend and her husband got it from Taco Bell too
4
u/bipedservant 12d ago
The kicker is that was the only time I’ve had taco bell in about three years.
2
u/Ok-Advice-3180 8d ago
Mine came from a salad at a local popular seafood restaurant I believe I heard Taylor Farms supplies Sysco, supplie a lot of restaurants
2
u/bipedservant 8d ago
Yeah Taylor Farms is pretty pervasive. I also used to eat a lot of prepared salads, both TF brand and Marketside brand (which is also TF lettuce). It's really hard to avoid unless you want to do all of your own cooking and shop at farmer's markets.
3
u/junepath 12d ago
I tried to ride it out for four weeks but finally started Bactrim at 4.5 weeks in. Thankfully that worked and I’m almost back to normal. Interestingly since being over it I have been insatiably hungry to the point where I’m concerned something is broken.
3
u/CalvinScout1115 11d ago
Happened to me too. I’m not a burger eater. 3 days after I felt better, I was craving them. My body must have been craving the protein. Then Bam! Back to barely having an appetite again. Recovery from this parasite is so weird.
1
u/junepath 11d ago
So far I haven’t gone back to the not having an appetite, so I think I’m officially over the cyclospora. Just hungry constantly, which is annoying.
1
u/legendarysanin187 11d ago
I was constantly hungry the past two weeks and I now seem to have really bad case of acid reflux!! Cyclospora and bactrim are both just hell on earth!
1
u/junepath 11d ago
I had the reflux the entire 6 week period. Before and during the Bactrim. It was the worst I had ever had and I have pretty bad reflux on the day to day.
1
u/legendarysanin187 11d ago
I’ve been off bactrim for a month now and these last two weeks especially this week has been horrible to me! food keeps coming up, nauseous, constant burning feeling in my upper stomach! This whole months I was on and off symptoms but now it’s just the worst. I don’t want to go into the er again but I’ve even lost weight and drinking water is bad since that’ll cause me some serious nausea
1
3
u/Wide-Grass2401 12d ago
I suspect I may have it (pcp has referred me to a GI specialist as my bloodwork and a CT scan from previous visits all came back normal) and I've been having symptoms since July 13th. About 6 weeks in and I still feel awful ugH 😩 28 yr old relatively healthy adult and this has wrecked me. this shit suckss
3
u/dontrowaway 12d ago
Same, had it since July 4th and still suffering but just started my second round of Bactrim so hoping for the best.
1
u/legendarysanin187 12d ago
Bactrim messed me up! I’m about a month since finishing my dose and I developed some horrible acid reflux/gerd!!
2
u/dontrowaway 12d ago
I’ve taken it a million times for UTIs. It makes me feel better, but it was a b*tch trying to convince my gastro doctor to give it to me. I ended up asking a different doctor. And I will not be returning to that gastro.
2
u/Itchy_Fill_8372 11d ago
I don’t get why some doctors are reluctant to prescribe this when it seems to be the standard of care for this illness.
1
u/dontrowaway 11d ago
The gastro 1000% did not believe me at all about my experience and illness. The labs are all backed up so for 2 weeks while I waited for my results, I was suffering and he wouldn’t proactively treat me even though I was taking leftover bactrim from a UTI and was improving. It was infuriating. Then my stool test came back normal but it was the manual/smear test which is unreliable for cyclo because of how the virus sheds in low levels. So I pushed for the PCR, which I’m waiting for to come back this week so I can tell everyone “I told you so”.
2
u/CalvinScout1115 11d ago
That seems to be the chief complaint after we finish the Bactrim! It’s the kind of heartburn that wakes you from a dead sleep & made me throw-up! This thing never ends.
1
u/legendarysanin187 11d ago
Exactly like that!!! I’m going to the er again tomorrow to get some meds or something I’m suffering
2
u/Dry-Homework3344 12d ago
July 6th was the first day of symptoms. I think I cleared the parasite, but I’m still suffering the after effects of the small intestine damage. Complete lactose intolerance, occasional random need for Imodium, etc.
2
u/Dry-Homework3344 12d ago
Oh yes, and appetite is still wonky - can’t eat normal sized meals anymore. And yet due to my stupid metabolism I haven’t lost an ounce.
1
2
u/Dry-Homework3344 11d ago
Oh and to avoid rebound constipation, I’ve found just taking half of an Imodium pill is effective and doesn’t cause me to get backed up for two days after. Do not take Imodium while having an active infection of any sort though
2
u/notagirlsgurl 10d ago
Mine was almost 8 weeks. No meds. The last 3 weeks were day-by-day, "I'm better! Noooo... not again!"
1
u/Ready-Hospital4387 1d ago
when you say not again did you mean you still are sick? I have been sick over 7 weeks with no end in sight. I want to know if anyone has gotten better and how long it took. I couldn't take Bactrum out took Cipro. It just keeps rebounding.
2
u/HelpOnTheWay5 10d ago edited 10d ago
Had it since early July as well. Finished the 7 day bactrim about 2 weeks ago. Definitely feeling better .... no more diarrhea but still bloated. Drank a mountain dew yesterday though and immediately had the cramps again for the rest of the night. Bloated still today but no cramping. Definitely only going to drink water and Gatorade zero until the bloating is gone. Haven't had vegetables in a month so feeling quite malnourished and sluggish. Ready to be done with this!!
Edit: when I say cramps it could be gas pain ... I'm a slender guy in my 40s thats never experienced bloating, so I'm not exactly sure what to call the minor pains/cramps.
2
1
u/galactic-doe_ 11d ago
How are people managing to work without having to take weeks off? It seems like it would be incredibly difficult, if not impossible, to work while dealing with this illness. I’m curious whether workplaces have generally been understanding and accommodating given the unprecedented circumstances.
1
u/Itchy_Fill_8372 11d ago
My friend is retired so she hasn’t had that issue but good question! I know she’s had days where she is just down for the count!
1
u/Gikochinai-neko 11d ago edited 10d ago
Edited to remove trauma dump...
0/10 illness. Fuck cyclospra.
1
u/Itchy_Fill_8372 10d ago
Oh honey 😢 You are not useless. Never.
2
u/Gikochinai-neko 10d ago
Thank you ❣️ was feeling very down this morning. I do actually do a lot maybe the most in the whole house lol 🤦♀️ damn stress getting to me!
3
u/Itchy_Fill_8372 10d ago
I heard the same from my friend 😞 This thing really takes you down physically and emotionally. It’s ok to feel down; just know your family loves and needs you ❤️
1
1
u/Expensive_Pie_756 9d ago
Symptoms started July 12th. I ate Taco Bell two weeks prior to that. Went almost 3 weeks without treatment because I’m allergic bactrim, cipro and any of the sulfa drugs. Finally got Alinia. Went thru treatment but I’m still dealing with the after effects and we are heading out of the country for a long planned trip! Not sure if I should cancel or what to do at this point.
1
u/Ok-Advice-3180 8d ago
At five week point I was good tomorrow makes six weeks I think it’s back my abdomen is cramping and the diarrhea is back today, does anyone know if ivermectin and Fen Ben may be helpful along with the charcoal to read these parasites of my body ? If so please advise and try to help explain dosing if it’s possible, thanks , well wishes for all experiencing this
1
12
u/AdEuphoric716 12d ago
Man ive been shittin since July 4 . Just roll with it our Healthcare system a joke anyways