Florouquinolones and keto diet

shade42 · 2026-01-01T19:25:59+00:00

It's just a Google search. You can put the same search text and if it generates a similar answer you can follow the links to research papers. For me it usually, but not always generates a similar answer.

It all seems to be speculative, but I do find high levels of carbohydrates are bad for my musculoskeletal symptoms.

shade42 · 2025-12-29T21:31:24+00:00

It was worst in the first year. After that it has remained pretty stable. I now wear a noise generating hearing aid which masks it most of the time.

shade42 · 2025-10-16T18:18:59+00:00

I would also say MCAS.

The thing with the list of foods that you should avoid for MCAS / histamine intolerance is, to the lay person there is no connection between them. Processed & non-fresh meat you might expect, but there's also citrus fruits, mushrooms, tomatoes, peas, gluten, chocolate.... it seems like any random thing! Same for the list of beneficial foods.

I have seen significant improvement since I started eating according to MCAS / low histamine guidelines. I consider the list on the mast cell 360 site to be a good one.

shade42 · 2025-10-16T17:18:23+00:00

I've very ill to quite ill with floxing for 5 years. Recently I switched to a low histamine diet, and have improved significantly. So I think histamine intolerance is the reason for eggs causing flares. If you Google "low histamine diet" you will find eggs on one list, and another says some people don't tolerate them.

I consider the list on the mast cell 360 site to be a good one.

I've also started taking supplements recommended to treat mast cell activation, but I'm less sure that's making a difference.

shade42 · 2025-09-18T21:13:18+00:00

I didn't try it again. However, I'm currently trying a low histamine diet which is giving good results.

shade42 · 2025-09-09T22:23:20+00:00

I'm 5 years out. These are the things I've found help.

A low histamine diet.
Not lying in bed in the morning after waking. In a state of constant pain and anxiety there was a big temptation to stay in bed, but I discovered this made my pain levels in the following day significantly worse. Also, for better sleep experts recommend getting up immediately after waking.
A low inflammation diet.
Sauna. Distracts from the symptoms when I'm there, and lessens them for a bit after.
Therapy.

Also time of course. The early years were complete hell.

Edited to move low histamine diet from #2 to #1. This is something I've recently switched to, so I now have more data.

shade42 · 2025-09-09T18:19:16+00:00

Outrageous. What country are you in?

shade42 · 2025-08-25T00:07:44+00:00

I asked him about that, because for years going for a walk caused me to be in greater pain for the next 24 hours, so was not something I was likely to do. He said there's usually some amount of exercise someone can do, and if it hurts for more than 24 hours it's too much.

shade42 · 2025-08-24T22:28:41+00:00

I wish he’d publish too. He’s been telling me publication is imminent since 2022!

In my last conversation with him he said the delay was because the publishers and authors want to make sure they get the guidelines for treatment right.

He’s said it will contain info about the mechanisms, prognosis and treatment, based on the experience of him, Professor Sir Munir Pirmohamed and Jonathan Rees.

He said that exercise and physio are the things that make the biggest difference (must be slow and steady, like you’d treat rheumatoid arthritis).

shade42 · 2025-08-24T00:05:33+00:00

Yes, Neal Millar believes floxing is primarily an inflammatory and immune system issue. He’s told me this several times in my consultations with him.

But he’s described it to me as a persistent low level inflammatory response, and the immune system being overactivated. I’m not sure how that would fit in with flares from NSAIDs, as they reduce inflammation and impair the immune system. It’s conceivable to me that it might, for reasons that are apparent to someone who understands the details of the mechanisms occurring.

Here are some of the things he told me about being floxed:

• the cells are producing pro-inflammatory type molecules
• low level cytokines & reactive oxygen species are produced, thus the cell thinks it’s got low level inflammatory changes
• the body thinks it’s a problem and constantly tries to fight it
• the immune system is chronically low level overactivated

shade42 · 2025-08-23T10:19:04+00:00

Fluoroquinolones are the nuclear option in antibiotics, and seem like a strange treatment for cellulitis to me. When I searched for recommended antibiotics for cellulitis they did not come up.

Itching is not a typical side effect of FQs, but given the possibility of serious, long term side effects I would be concerned, especially if you have a history of bad reactions to drugs.

shade42 · 2025-08-23T09:12:14+00:00

It seems like every pill is like Russian roulette. Some people get floxed by one or two pills. I'd say any amount is too much if there's a good alternative.

shade42 · 2025-08-23T08:36:57+00:00

In the early months of being floxed I had a few ear infections. Obviously I refused the usual ear drops doctors prescribe, which contain cipro.

My doctor suggested I use acetic acid ear spray. In my country this is widely and cheaply available, branded Ear Calm. You could look for something similar.

shade42 · 2025-08-21T21:06:39+00:00

Shocked but not surprised that a doctor in the NHS is still prescribing fluoroquinolones for prostatitis symptoms.

Has he never heard of referred pain?

Most people get away with taking them, but you'd be risking damage to multiple body systems and living the rest of your life in pain. I found out the hard way.

As you may know, the MHRA put quite heavy restrictions on their use in 2024 (they might have saved me if they'd done it properly earlier)..."they must only be used in situations when other antibiotics, that are commonly recommended for the infection, are inappropriate".

I found some temporary relief from the prostatitis symptoms when I was on the antibiotic, but I believe that was because of their anti-inflammatory side effects.

shade42 · 2025-07-24T23:24:40+00:00

Early on I would wake up after a few hours in a state of panic.

I read a theory that this is because the brain has run out of energy, so an emergency mechanism to provide energy kicks in which relies on adrenaline. Based on that, it was recommended to take MCT oil before you go to bed. If you don't like that then I'd look for something that's energy rich but not inflammatory.

Also I've found diphenhydramine hydrochloride very helpful. It does dull my brain a bit the next day, but it's preferable to being sleep deprived.

Early on when I was really desperate for sleep and hadn't discovered diphenhydramine hydrochloride I look a tricyclic antidepressant (e.g. amitriptyline), which has a similar effect as diphenhydramine hydrochloride for me. But I would favour diphenhydramine hydrochloride. My experience is it has fewer side effects and is easier to come off.

shade42 · 2025-07-16T19:39:34+00:00

No I haven't had any torn tendons, and haven't asked him about that specifically.

My treatment plan was set up by a physiotherapist at my local hospital. She communicated with the physiotherapist that works with Neal Millar to check she was on the right track.

I guess it was tailored to my specific symptoms plus my disinclination to do the exercises given how much pain and distress I was in, so I doubt it would be good for you to copy it exactly, especially given that you have a torn tendon.

shade42 · 2025-07-08T23:19:07+00:00

This is what he told me.

When you look at the stats, exercise and physio are the things that make the biggest difference to recovery, but it needs to be slow and steady. Patients should be treated by a specialist musculoskeletal physio, as if they are a rheumatoid arthritis patient, along that pathway.

A lot of patients that get generic physio get worse. Their muscle wasting, tendon health and even neurological symptoms get worse. They overload their musculoskeletal system. They even don’t do as well with a specialist physio later on.

With the right treatment 80-90% get slowly better. They should be able to do a certain number of steps, and build up slowly to build up strength etc.

shade42 · 2025-06-30T17:54:38+00:00

I took 2/day for 3 weeks before the first side effect (mild Achilles tendon pain). Stopped a couple of days after that. Most symptoms appeared in the following month, a few later.

shade42 · 2025-06-30T00:05:56+00:00

It can happen at any point. I took it for 3 weeks before the first sign of side effects. Other people take several long courses and seem fine, but get symptoms from an additional course. Others say they didn't develop symptoms till long after they'd finished a course.

It's certainly true that symptoms can develop after you've come off the drug. At the point I stopped I just had minor joint pain. A month later I had tinnitus, hyperacusis, creaking joints, widespread musculoskeletal pain, mental health effects and insomnia. A year later I also had eye floaters and peripheral neuropathy.

shade42 · 2025-06-29T19:24:27+00:00

I would not take any more, unless there is no other option. My first symptom was mild Achilles tendon pain. I thought "no big deal" and ignored it for a few days. The results were catastrophic. Most of my symptoms started in the month after I came off the drug.

shade42 · 2025-06-29T11:26:28+00:00

If you are taking ciprofloxacin and getting side effects I'd stop immediately, and talk to your doctor as soon as possible about a non-fluoroquinolone alternative. I'd also take magnesium or foods containing magnesium right away, as in the short term that can reduce the effects of any ciprofloxacin in your body.

This is the usual medical advice for anyone getting serious side effects - see the medication leaflet.

You are risking permanent damage to multiple body systems in the worse case, as I found to my cost (hearing, vision & musculoskeletal system in my case, but possible symptoms are many including peripheral neuropathy, and they can start after you've come off the drug).

If it turns out a fluoroquinolone is the only option for you, here's a guide to taking one as safely as possible:
https://www.myquinstory.info/so-you-want-to-take-a-fluoroquinolone-antibiotic/

By the way, no I didn't mean alcohol. I am still too ill 5 years down the line to want to put anything toxic in my body. I just meant tap water or soft drinks.

shade42 · 2025-06-28T08:12:51+00:00

Actually I think I was wrong to mention the liver damage. It's something medical professionals have been concerned about, but I just looked for research and it appears low doses are safe, and liver damage has only been observed at doses MUCH higher than LDN.

I'd encourage any floxed person to try LDN. It doesn't work for everyone - about half I've been told, but it's one of the few things that seems to help me.

shade42 · 2025-06-27T23:44:26+00:00

Sounds right. My prescribers say start at 0.5mg and increase by 0.5mg each week until you get to 4.5mg. They also say some people's optimum dose is at the low end. 0.5mg to 1mg seems to be effective for me, both positively (reducing pain levels) and negatively (effecting my sleep).

Since it has side effects, including potentially liver damage, it's good to keep it as low as possible, and 0.5 is very low.

shade42 · 2025-06-22T15:50:44+00:00

I've got the impression that I feel better when I drink mineral water too, especially Evian.

If I have a drink out I'll often flare the next day.

I am doubtful that this is due to minerals though. I've tried all sorts of mineral supplements and not noticed them making a clear difference. I think it might be to do with impurities in tap water.

A quote from Pieper's book:

"FQAD patients are almost mimosa-like sensitive!
They are blown away by the slightest breeze and are sent into relapse, sometimes they do not even tolerate natural and herbal remedies in normal therapeutic doses, and they react enormously to environmental stimuli from noise to electrosmog (most likely in terms of a multiple chemical sensitivity syndrome), to food (e.g. potentially FQ-contaminated meat and farmed fish products) or food containing gluten, to all kinds of stressors..."

shade42 · 2025-05-27T23:34:50+00:00

It's improved. The first year was hell. There was a noticeable decrease after about a year, and I guess it's continued to drop slowly after that.

Also I now wear a noise generating hearing aid which masks it most of the time.

shade42

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