Well... very interesting post.
A few more thoughts:Cholestyramine
First, Questran IS a GI binder but it's a manufactured version of cholestyramine like Welchol and likely has fillers and maybe even sugar but certainly not much of the cholestyramine. It is cheap, though.
I'd skip it and try the OTC stuff first. If you're going to take cholestyramine for true GI binding, you need more than you're going to get in the mfr version. I take PURE cholestyramine and it's made a huge difference in my tx but it's also VERY expensive. All binders require 2 hr buffers
Regardless of which binders you use, you'll still need the time buffers before and after it - very important so that you don't bind the stuff you want to stay in your GI and prevent it from being absorbed - and so you don't use up the binder on stuff you don't want to absorb.
I do agree w/ your LLMD that a binder is probably most beneficial so you might want to revisit that. I have been on a protocol that included doses of something every half hour from 7am until bedtime so I know how very difficult the 2 hr buffers can be. But the impact of a binder on neurotoxing can be undervalued by many LLMDs. So I suggest trying to coordinate the binder as the last thing you take before bed so that you're only trying to fit in the 2 hr buffer before the binder.Antifungals
So - now that you mention the Nystatin experience, there is another possibility for what is going on:
With the reactions to Nystatin and Fluconazole you're describing, you could be herxing from EITHER die off or from overgrowth--it's difficult to tell. Unfortunately, as I was describing in the previous post - the yeast/fungal overgrowth can cause the same sx as the die off of the overgrowth. In other words:
- a possible scenario could be that the abx + Nystatin created herxing from die off sx, producing the migraines from the neurotoxins. And then when you stopped taking the Nystatin, the die off also stopped as well as the herxing. And in this scenario, the diflucan isn't as effective as the Nystatin.
- another scenario is as you suggested - the diflucan is more impactful against the y/f strain(s) you're dealing with so they are creating the migraines from die off. But I'm not sure about
this - you'd need to be on one or the other antifungal a lot longer than it seems you have unless I'm wrong about
To complicate matters, if you develop yeast/fungal overgrowth from the abx, you're generally going to need to stay on antifungals as long as you're on abx. Also, if you've already developed a y/f overgrowth, it's very difficult to knock it down with natural antifungals, which are generally more effective with prevention and maintenance once the overgrowth has been rebalanced.
Generally, as long as you have sx you still have overgrowth. And many of these sx overlap with Lyme & Co, which makes this even more difficult to navigate. Sequence
One thing that I have started suggesting to people who cannot seem to rebalance the overgrowth while on abx is to take a break from the abx, give the body and the antifungals a chance to get things under control, and then stay on the antiungals while restarting abx.
- One reason is to give the antifungal a chance to work before abx stirs the pot.
- But also, unmitigated y/f overgrowth often creates GI problems including damage to the GI's mucosal lining, where 70% of the immune system is. So this is a threat to successful treatment.
- Additionally, damage to the mucosal lining can greatly interfere with treatment (which is quite expensive) when we're not absorbing meds, supplements or nutrients well.
- And another benefit to addressing the y/f first is that you also reduce and simplify the sx, which makes it much easier to navigate the Lyme & Co tx.Yeast/fungal overgrowth
Here is a lot more info on y/f overgrowth if you're interested:
Y/FO post in the "New to Lyme?" thread:www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275Stool test
Another thing you can try is to take a Doctor's Data stool test that also includes a list of pharmaceutical and natural antifungals that the y/f that is found is susceptible to. In that case, you might have more success with a specific natural antifungal that you KNOW is going to work against the strain(s) you have. But generally, the natural antifungals also need to be rotated so you'll need to find two.Next steps
In your case, I think you might have success with pausing abx, get the antifungal figured out and then resume abx. It would help if you could identify other possible y/f sx you might be experiencing but don't know it - there is a lot more info in the link to help you identify other possible sx.
Once you figure out which antifungal is actually reducing y/f overgrowth, the GI binder will help reduce those sx.
Hope that's helpful -
LYME FORUM MODERATOR
Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine