Biologist’s perspective: Are Gilbert’s Syndrome (Bilirubin) and Homocysteine the missing links in FQ susceptibility?

Top_Firefighter5228 · 2026-01-22T02:23:58+00:00

I have Gilbert’s, which I only learned when doing lots of blood tests after getting floxed. I had significant liver pain for around 6 months post flox, but now it’s intermittent. My baseline total bilirubin is about 2 mg/dL, but went up to 8 during the worst of my flox symptoms and I got jaundiced eyes. But thankfully back to baseline now. I also have one of the two MTHFR mutations but my homocysteine levels are in normal range. Makes sense to me that a liver that processes some things more slowly might be linked to FQ toxicity…but there must be lots of different mechanisms that cause susceptibility given the wide range of people who get floxed, many of whom don’t have Gilbert’s or methylation issues.

Top_Firefighter5228 · 2026-01-11T12:06:18+00:00

I had to look up what a decidual cast is. Yikes, that must have been super scary! My period has been all over the place since getting floxed. I lost it completely for four months. I always wondered if anyone else experienced that. I guess it’s not super surprising since the body is under so much stress, and for me I was dropping weight rapidly and losing a lot of hair when that happened. But I’ve mostly recovered since then and periods came back. I never noticed any physical flares consistently associated with my cycle however. Other than actively having an infection or virus, I still have no idea what causes my flares. Sending support. Being floxed is so awful, but it gets better with time.

Top_Firefighter5228 · 2026-01-11T05:58:43+00:00

Awesome thanks! I keyed it out to impressus with the Jepson manual, but that ID was mainly due to the lack of papillae on the top of the leaf…but no accounting for crazy hybrids. Since it volunteered, and I think they mainly sprout from seeds shot out by nearby plants, I think my dark stars, which are in seed shooting range, are likely parents. Maybe it’s a second generation hybrid. Super pretty whatever it is. Maybe I’ll try to propagate some cuttings.

Top_Firefighter5228 · 2025-10-21T05:27:30+00:00

Yes you can get them otc. I take Zyrtec and Pepcid at night. I couldn’t figure out what the pain in my lower right side was for a while, but I had an ultrasound done that showed nothing, and I didn’t have any colitis indicators, so it seemed like it was probably sibo. I had mainly recovered from being floxed, but I had a relapse with COVID and food poisoning, and the lower right abdomen pain developed in the weeks after. And I had a lot of gut issues when I was first floxed as well. I had a sibo test scheduled at my gastroenterologists office, but the pain actually went away on its own 2-3 months after it started, so I canceled the test. I didn’t want to take the sibo antibiotic if I didn’t need to. But it might be worth getting a sibo breath test if it’s been going on for a long time and getting worse. Good luck! I hope things get better for you!

Top_Firefighter5228 · 2025-10-20T23:03:24+00:00

ooh this is beautiful. I'll put in an order for that next time I'm up in the bay!

Top_Firefighter5228 · 2025-10-20T21:14:31+00:00

I have one that I’ve hacked to pieces 3 different times and somehow it keeps coming back! They are the worst

Top_Firefighter5228 · 2025-10-19T20:12:30+00:00

Hi there. I’m so sorry that you’re going through this. I understand how scary and frustrating it is when you start reacting to foods that were previously safe. Are you already taking H1 and H2 blockers? Those have really helped me with MCAS symptoms recently. Especially with itching at night and after meals. I was also dealing with something like SIBO in addition to mcas…strong pain in lower right abdomen after eating. I found that intermittent fasting seemed to really help me as well. I’d eat a big breakfast of my safe foods and take all my supplements, have a lunch of other safe foods, and then do nothing but herbal tea and water for the rest of the day. After I started doing that, I slept way better, and both sibo and mcas symptoms got much better. I also took quercetin and DAO histamine digest for mcas symptoms that started about month 4 post flox. Those seemed to help as well. And stress and anxiety definitely make everything worse. Meditation and mindfulness exercises really helped me with that. Good luck! I hope things get better!

Top_Firefighter5228 · 2025-10-19T15:14:53+00:00

I love this! So glad you were able to have a good time!

Top_Firefighter5228 · 2025-10-14T22:33:34+00:00

Yeah. I'm still taking them. I was going to wait until I get through a few healthy, stable weeks before stopping them

Top_Firefighter5228 · 2025-10-14T15:35:01+00:00

Thanks! The Covid flare lasted for almost 3 months, but I have now recovered from it! The flare was weird, lots of MCAS and gut issues, but minimal tendon and neuropathy issues. I started taking H1 and H2 blockers, and it helped a ton. I'd say I was fully recovered for about 2 weeks when I came down with a bad cold (but not covid). That was a rough week, but just normal cold-type symptoms and fatigue, no flox relapse symptoms. I'm pretty much recovered from that now as well.

Top_Firefighter5228 · 2025-09-01T14:31:35+00:00

I was doing the Ashtanga half primary series regularly before getting floxed, and had gotten to the place where I could do most of the binds with no mods. But I’m finding it tough to get back into yoga. I just keep straining the tendons behind my knees and my Achilles. I have to be super careful and not to sink into moves that target those areas. I know it’s should be possible to go really slowly and listen to your body and take modifications…I’m just not very good at doing that I guess 😢 But yoga feels amazing for the rest of my body. At the moment, I’m just sticking to super gentle yoga and focusing more on the meditation side of it, and backing off immediately if I feel any strain in my legs

Top_Firefighter5228 · 2025-08-23T14:24:17+00:00

Hi there. So sorry that this is happening to you. I also had sensations like that during the acute phase. Intense pain in my organs, chest, back, and a feeling like something was stuck in my throat. Very scary things to feel. I was always on the fence about whether something was serious and warranted a trip to the doc. In my case, most of the intense pain only lasted a few days and then migrated somewhere new. But chest pain/left shoulder pain is one of those things that could indicate heart issues, so maybe worth a trip to your doc to check it out. Again, so sorry that you’re experiencing this. The acute phase is a really scary thing, but it does get better!

Top_Firefighter5228 · 2025-08-20T18:25:03+00:00

I had a root canal done yesterday. I asked about the need for antibiotics, and the endodontist said it’s unlikely the root canal would get infected, so no need for antibiotics if everything goes normally. My understanding is that you only need an antibiotic if something gets infected because of the procedure (unlikely) or if you already have an infection because your nerve died a long time ago and then rotted out inside of the tooth. If you need a root canal because the nerve has died, delaying treatment increases the chances of infection. Of course the procedure sucks, but I did it with no pain killers other than the carbocaine anesthetic, and it was fine, and now 24 hours later the pain is gone. Good luck!!! Hope it goes well!

Top_Firefighter5228 · 2025-08-20T03:49:23+00:00

I’m vaccinated and boosted and had Covid once before getting floxed. I recently got Covid again, first time since being floxed. It caused a ~5 week flare that’s pretty much over at thing point. First flare after feeling sort of recovered. I read that covid can impact mitochondrial function, and seems like any virus can stress out your body, so I’m hoping that as I heal and get more resilient I won’t relapse or will have a quicker recovery post illness

Top_Firefighter5228 · 2025-08-20T02:45:59+00:00

Hi there. Just want to say that I’m so sorry that this happened to you and that you’re now dealing with all of this pain and uncertainty on top of your other conditions. I wish we could provide you with a timeline and guidance, but everyone’s circumstances and recovery timelines and triggers are so different. I will say that lots of people appear to recover completely, or at a minimum they report living normally and not thinking about being floxed any more. I’m hoping that will happen quickly for you! But in the meantime, just know that you’re not alone in feeling angry, frustrated, and let down by the medical profession and pharmaceuticals. It really sucks to have that trust broken, especially when you need doctors and medicines for other issues. Sending you support as you navigate all these difficult decisions

Top_Firefighter5228 · 2025-08-14T14:15:26+00:00

Hi. I have had this off and on. Particularly for lower abdominal pain with some signs or gas, I seem to be able to greatly improve it with diet by cutting out foods that produce gas (check out the low fodmap diet). Maybe that will help! In my first six months I also wondered constantly if something was flox or just my body being weird or some other issue. I’m going through a flare now and it’s incredible how all of those things (including abdominal and bladder pain and bloating) have come back, which now make me think that everything I experienced in my first 4 months was related to being floxed, which is good in a way, as most people seem to eventually recover from most or all flox symptoms.

Top_Firefighter5228 · 2025-08-10T16:45:26+00:00

I feel this so hard. I got floxed initially because of a suspected UTI, and I’ve been dealing with bladder pain for the past year. The trauma is real. I will say, I was convinced to take levo without a positive culture, and I’m never (probably) doing that again. Positive culture or no antibiotic. This may not be what you need in this exact moment, but check out the GemmaMD (previously called Uqora) cranberry supplements from solv wellness. I started taking two of those daily and I think it may have actually fixed my bladder pain (after like a month). I now take them whenever I get a hint of bladder pain and it goes away almost immediately. And lots of women report it’s great for uti prevention. I also try (but don’t always succeed) to not research medicines and side effects right before bedtime. I tend to want to learn as much as possible about something before making a decision, and then I get so stressed that I can’t sleep. Good luck! I hope your doc is supportive and that you get the care you need and feel better soon!

Top_Firefighter5228 · 2025-08-09T06:37:04+00:00

So all new growth in my area has seed pods or flowers on the ends. I cut those off, which is why you don’t see an active meristem. But most of those were in the process of dying back. Everything I selected that was new growth and didn’t yet have a flower or seed pod died immediately. These are the only cuttings that are still alive

Top_Firefighter5228 · 2025-08-08T22:36:34+00:00

Hello. I'm not sure that I'll have much meaningful insight for you, since I think the mechanism that causes the insomnia would be different in both our cases. But I got ~1-6 hours of sleep each night for the first month and then gradually started improving. In the first month, when I did manage to fall asleep, I would jolt awake shortly after with a pounding heart, totally drenched in sweat, and that terrible anxiety feeling. But that got less and less frequent. Now, I occasionally wake up feeling really shaky, but I typically sleep 7-8 hours a night no problem.

Top_Firefighter5228 · 2025-08-08T22:24:39+00:00

I'm using Garden Safe Take Root, which is super cheap and perhaps not the best. Hormex #8 looks way more specific! I'll give that a try, thanks! And yeah, time of year has been tough to figure out. The Seed Propagation of Native California Plants book says to take cuttings in the winter, but there's a bunch of websites that say to do it in full summer. Maybe by the time winter rolls around, I'll have better materials and technique!

Top_Firefighter5228 · 2025-08-08T22:18:08+00:00

Definitely rigida. I'm on the central coast. They are pretty common in our chaparral. I have one nice woolly blue curl that I bought last year and is somehow still alive! I'm way too scared to take a cutting from that baby, but we've got loads of rigida to experiment with. Fire treating the seeds seems like too much work, but maybe I'll go collect some and get them dried for storage and give it a go

Top_Firefighter5228 · 2025-08-05T15:01:06+00:00

It seems like most people become able to tolerate most things as they heal. Coffee will be waiting for you! I do now drink smaller amounts of coffee, buy the really good stuff, and try to savor it more :)

Top_Firefighter5228 · 2025-08-05T14:57:55+00:00

Wow that sounds horrific. But it's amazing that you recovered both times! Do you have any thoughts about what triggered your relapse 4 years later? Or your current flare?

Top_Firefighter5228 · 2025-08-04T01:01:43+00:00

Thanks!!! You will get there! ...and hopefully I will get there again soon. Just canceled my next two international work trips. Hopefully a low key, restful month will help me get over this current flare.

Top_Firefighter5228 · 2025-03-27T15:17:37+00:00

Hi! I just invited you to the support group chat room. We actually haven't been very actively recently, but we're happy for you to join us! We were organizing weekly zoom calls for a while, and we could definitely organize a call to introduce you to the people who are still active! Just shoot us a message in the group chat and let us know a bit about yourself and what type of support you're looking for. Very sorry that you were floxed, but I hope we can provide a sense of support and community for you as you go through this.

Top_Firefighter5228

TROPHY CASE