IS treatment this easy?

Thanks for sharing, Bro!

Wow - that’s very interesting.
Easy enough to try it!

“ Out of 11 patients 8 was cured and 4 considerably better..

somehow it doesnt seem to add up...🤠 “

🤣

MooseSafari said...

somehow it doesnt seem to add up...🤠

When the researcher starts taking the pills too but has to report for them. 🤣

I think in the study it said 1 had to drop out because he had another medical condition after the trial and couldn't be evaluated

I have followed this fluconazole treatment protocol. (200mg daily, 25 days)

It was useful, tolerable, but not curative for me.

I do believe it should be in a treatment rotation.

It cleared up a chronic nasal infection I had (many years), my sinus cavity opened.

It also cleared up some long term tooth discomfort, probably related to the nasal infection.

I subsequently started nasalcrom daily (I herxed with the nasalcrom), my sinus has remained clear.

I tried fluconazole, didn't notice much herxing from it, but it did mess with my sodium/potassium, probably due to Cytochrome P450 enzymes. So I discontinued it.

Really curious to hear others experience.

Sometimes the reason drugs work is not what you'd think.

I've had doctors assume that I had babesia and tell me to take mepron. PCR test was negative, and I didn't have clear symptoms of babesia (liver function was normal). But when I took mepron I found that it enhanced the effect of clarithromycin (probably by acting as an efflux pump inhibitor). Moreover it had an antiviral effect, particularly against coronaviruses. So it turned out that mepron was very helpful, but for completely different reasons than what is commonly assumed.

So if for some reason fluconazole works, it's probably not due to a direct effect on borrelia. For me, fluconazole didn't work.

Quin said...
Lymie24: The reason for the long QT is probably that it messes with sodium and potassium. This is not due to a Herxheimer reaction, but due to affecting cytochrome P450 enzymes and messing with adrenal hormones (aldosterone).

I see. Is this a common problem? Is Diflucan considered a relatively safe drug? Is there a way to mitigate the potential long QT issues?

Thanks

Lymie24 said...
I see. Is this a common problem?

There are 2 types of Long QT syndrome: congenital and acquired. The acquired type is usually drug induced. Which is also known as Drug-Induced Long QT Syndrome.

To answer your first question (if it's common), there are over 100 medications that can cause this. According to the FDA there are a total "over 20,000 prescription drug products approved for marketing".

So in terms of it being common, this means that according to that data 100 ÷ 20000 = 0.005 = 0.5% of all marketed drugs can cause it.

However this is still 2 steps away from a bad situation:

1) 0.5% of all marketed drugs can cause it but not always do.
2) In the event that it does happen, it doesn't always end in death.

And finally, most drug induced long QT syndromes are reversible when you stop the drug.

The issue however is that in the absolute worst case scenario the result can be death and that can happen while taking the drug.

Lymie24 said...
Is there a way to mitigate the potential long QT issues?

It's rather pricey, but you could do several ECG's from time to time. Sure you can try taking supplements but there is absolutely no way of knowing if it's helping. Keep in mind this is the heart so it's not something to takes medical guesses with.

Hope this helps a bit! 🙂

Oh and sorry I just realized you asked Quin. 😳

Bro: Nope, I have not been prescribed diflucan at this point. The only time I have ever taken diflucan was, I think, for 7 days before my first treatment with my original LLMD. Do you know the purpose of them prescribing you difulcan? Are they prescribing you nystatin as well?

Rainy: Haha, no I was quoting Quin, but I was just asking in general. Thanks for the information. I was specifically wondering how common long QT was for diflucan. I have taken other drugs with this potential issue (plaquenil, clarithomycin) and never noticed any issues. I had lots of heart symptoms last year with 2 ER visits and cardiology tests. Lots of EKGs done on me last year with no significant abnormalities found. Still, as many can probably relate, I've had tons of heart symptoms through the years. Palpitations, chest pain (which my original LLMD thought was costochondritis, and a racing heart at times. I've taken a fairly fatalistic view of these symptoms. They are too common for me to run to the ER every time.

Deep_sleep: It's an uncomfortable truth for us with this illness to have to admit that the science in this field sucks and the treatments do as well. Even when observational studies are carried out, with subjective results, the success rate is not high. These are the best studies we have! For example, Liegner's Disufliram patients, his remission rate was in the 30s%. I believe Horowitz's aggressive Dapsone therapy remission rate was also in the 30s%. I agree that good choices make a difference, andI can only speak from my own experience, but good lifestyle choices do not lead me towards reduced illness. Only effective treatment can reduce my symptoms. Every time I hop off of treatment my symptoms explode. We need better treatments.

Post Edited (Lymie24) : 5/18/2022 9:01:44 AM (GMT-6)

Garzie said...

Lymie24 said...
These are the best studies we have! For example, Liegner's Disufliram patients, his remission rate was in the 30s%. I believe Horowitz's aggressive Dapsone therapy remission rate was also in the 30s%.

its not necessarily as grim as that overall

for example - in Horowitz's study - his remission rate for his high dose pulsed dapsone combination protocol was 30% - but that was of Lyme disease patients who had failed all other antibiotic combination therapies including double dapsone - so that is a small subset of the subset of all patients that end up with Dr H - often the sickest people who have failed other LLMD's

his study on double dapsone therapy had a remission rate of around 50%

so it might be fairer to say double dapsone, or where needed high dose pulsed dapsone, was together able to get 50% then 30% of the remainder, so 65% overall of the toughest Lyme disease cases to remission.
(at least according to Dr H's criteria and follow up time). that's actually pretty impressive.

i also wonder how many patients go in with the paradigm that they can more or less continue with their pre-lyme attitudes to food, sleep, stress, lifestyle, mental health etc and that antibiotics will somehow do all the heavy lifting and make them well again. that's a big ask.

everything i have read and witnessed here and in speaking to people in the Lyme community leads to me believe that this is false and these factors have a major impact on our prognosis.
in my personal experience i also made very little progress until i made major adjustments to optimise these areas.

there will always be mixed compliance with any patient group and i expect some will be just too freaked out or ideologically opposed to make changes - or address things that need to be addressed - eg mental health issues - so i think there will always be a significant portion of failures with such a difficult to treat disease.

but at the same time i see this as a message of hope - that there is a lot we can do to help ourselves

Good points Garzie. Thanks for digging down deeper and making me think harder about my comments. I agree with your assessments.

I agree with you on the pre-lyme behavior and leaning on the antibiotics. That is exactly what I did initially. It took awhile for me to accept the fact that I wouldn't be able to sustain the, undoubtedly unhealthy, lifestyle I had before Lyme. I agree that the sickest and most chronic most likely won't get well without those lifestyle changes. However, from my own experience, it doesn't matter how I eat, how I sleep, how much I perform stress-reduction techniques, how much I smartly exercise, and all those other lifestyle modifications; if I'm not getting adequate treatment I am regressing quickly. It takes both for me.

bro123 said...
Lymie24, they prescribed me it for yeast, but im hoping it has some affect on lyme and Coinfections.

Gotcha. Have they put you on Nystatin as well?