@loriskt My goodness, gurl!! You are in a world of hurt right now. I’m glad that you came here to share what’s going on. First, having a UTI and possible diverticulitis can just completely wipe out any last bit of energy you have…on top of fibromyalgia and long Covid? Yikes. No wonder you feel like you’ve gone through a wringer!
Yesterday must have been harrowing for you! But now that you’re being treated with antibiotics I think you’ll start feeling some relief in a couple of days to some of the issues going on.
If I may though, as someone who was on antibiotics for 2.5 years, let me help keep your guts healthy. I’d suggest getting a couple tubs of non-fat, plain Greek Yogurt. You can sweeten it a little with jam, honey, fruit, etc. But don’t buy the sweetened yogurt. Just too much sugar.
Eat 1/4 cup or more, three or four times per day. Do this at least 2 hours after and 2 hours before you have your antibiotics. If you take it too closely to the meds, the antibiotics will kill off the probiotics of the yogurt. This will take planning on your part but it’s worth it to avoid diarrhea issues! Even when you’re done with the prescription, keep up the yogurt another couple of weeks past that! And drink lots of room temp water to keep things flushed…
I’m not sure if the CLL is the culprit for all of the symptoms right now. Though many are common with CLL like night sweats, fatigue, chills. But usually not to the extent that you’re experiencing right now. It may also be from your gut issues and the UTI. While you’re waiting for other members to comment on that, I have another thought.
Since you’re having so many systemic issues happening with long covid, fibromyalgia & CLL I’m going to toss out the idea of visiting a Functional Medical practitioner. Functional Medicine is a science-based, root-cause approach that looks at how your body’s systems—nutrition, sleep, stress, hormones, inflammation, gut health, metabolism—interact. Rather than treating symptoms singularly, this approach evaluates how the whole system functions together.
For some people it can really provide answers to their health issues. I’ve had my own experience with this type of practice and it was so helpful along with my stellar conventional medical teams.
Not sure where you live but here is a guide in finding a clinic near you.
https://www.ifm.org/find-a-practitioner
Has your CLL doctor mentioned a stage for your disease? Have there been any signs of progression with changing blood numbers since your diagnosis?
@loribmt
Thank you for all the tips and the link for a functional medicine practioner! I'm on my second full day of antibiotics, no relief yet but I'm hopeful.
I just got an e-mail from myleukemiateam.com that said "The U.S. Food and Drug Administration (FDA) has approved the first all-oral, fixed-duration combination therapy for adults newly diagnosed with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). “All-oral” means the medications are taken by mouth — no infusions or injections are needed. “Fixed-duration” means the treatment is given for a set amount of time, not indefinitely.".
It's the first I have heard of therapy for newly diagnosed adults. I'm going to ask my oncologist about it.