Advice on my mystery probiotic issue

Hi I haven't had this experience but I do remember some posts back about a year or so ago when probiotics made them very ill.


Hopefully others with more knowledge about this will respond soon, this will at least bump your post up for more views.

Take care and I wish you the best of healing, Jo

Hi Misalilly -

Wow. I hope you are feeling better. I think you should stop and stay off the probiotics. People can react to the ingredients just like anyone can react to herbs or foods.

- They could be creating an imbalance in your GI if your bacteria levels are just fine - I can't tell if you've already taken abx or not.

- Your body might do better with probiotic foods (only - w/out probiotics).

- And you could have an undiagnosed yeast/fungal overgrowth - the probiotics could trigger massive die off, which is tough for your body to manage. Two offgasses from yeast/fungal die off are ethanol and ecetaldehyde - a little bit is one thing. Too much and you create serious toxicity.

Here is more info on yeast/fungal overgrowth, in case this might be an issue for you:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

That link suggests what you might do in response if you also have a y/f issue.

There ARE Lyme-friendly gastroenterologists but they are few and far between. Mine is in San Diego - not sure if that is close to you - and he does not accept insurance.

Regarding Lyme & Co treatment moving forward -
Has your LLMD talked with you about herbal treatment? Most of us are doing a hybrid approach - abx & herbals - but there are quite a few people doing herbals only.

Both IV abx and herbals also affect the GI microbiome but on a lesser scale.

Although I'm almost done, I've been on IV abx for 3 yrs as well as herbals. I have had serious GI issues for the past 10 years but made good progress to heal as much as possible before I started herbal tx a few yrs ago. I started low but worked up to HUNDREDS of billions of probiotics. I just didn't feel that they were helping much and after I stopped taking them my GI seemed to calm down.

For the past year, I've not used any probiotics. Instead, I have used antifungals intermittently and have used a good GI binder on a regular basis--the binder seems to be doing more than detoxifying my GI. It really seems to be helping to prevent overgrowth and imbalance in the GI. So that is something else to consider.

Hope this is helpful - if not just keep asking questions -

-p

Well, your plate is full - I know the feeling. And solutions will come incrementally and you might even need a little luck. But we can help try to work through them. Here are a few more suggestions:

Take one thing at a time.

Antifungal
I'd first get on an antifungal (Nystatin is good - PURE Nystatin is so much better - that thread explains why) and you can take it long-term if you take it the right way. This will help reduce some of the imbalance, some of your sx.

I was born with low good bacteria and have had it my entire life. After 4 yrs of tx and a lifetime of y/f overgrowth issues, and a LOT of GI problems this past decade, I finally came to the realization that I'm not going to "fix" the good bacteria levels with any kind of supplemental or food intervention (although I think the food is better than the products and don't forget that you could be reacting to probiotic foods for another reason - they're sometimes high in histamines, for example).

Testing
My Doctor's Data tests rarely showed anything significant, yet my GI problems were severe. You had a lot more beneficial bacteria than I ever did so that's a plus. DD is a good test in some ways and very limited in others and the other y/f testing isn't any better - particularly the blood tests. It's most productive to go by your symptoms. Also, do your DD results indicate the susceptibility of the yeast/fungus it found to antifungals? This might help guide you for what to take in response. But remember - that test does not look for all the strains - not even close. It's a good starting point, though.

Long-term
I'm literally biding my time until I'm done w/ abx and can do a fecal transplant. There really is no other way to replenish or create a more populated microbiome. It ain't pretty but it IS available and is solving MANY GI diseases. At this point in time, most gastros won't do it unless you have c-diff but eventually, this will change or there will be ways to work around it.

So - all that to say, I think that you have limited options to rebalance the good bacteria right now, but it's likely that the probiotic products are gonna make the situation worse.

It's awesome you passed some parasites.

Binding
OK - not all is lost - there is something else you can try. When I suggested a GI binder - I meant a strong binder. Chlorella is not a good GI binder - I mean, it does bind but it's best used with a strong chelator to help usher hvy mtls out of the GI (which is something we Lymees probably shouldn't be doing while we're also treating Lyme & CO). But it's probably not going to be your best bet for what I'm suggesting for you. Others also suggest that it is also capable of redistributing hvy mtls - I really don't think it's the best choice for general GI detox binding.

For you, I'm suggesting a strong binder that grabs what it can and actually keeps things moving through the GI, and can actually prevent y/f overgrowth. It might be your best substitute for a probiotic right now until you can get off the abx. I found that the cholestyramine I'm taking basically allowed me to get off the antifungals. It's PURE and expensive and I'm taking high doses and that's not something everyone can do - but others have suggested that modified citrus pectin is as effective.

Other good binders include activated charcoal, bentonite clay and I'd avoid roughage-type binders like psyllium husk until you get the yeast/fungal overgrowth under control. Y/f can cause damage to the mucosal lining of the GI and roughage can aggravate this damage.

Over time you can double-up. It does take awhile to work up to high doses - you should treat it like any other detox component, start slowly and work up to optimal doses. And as you probably know, binders need SOLID 1.5-2 hr time buffers before and after taking them between anything else you ingest. And LOTS of water before, during and after taking them.

Myco
I have just entered the myco vortex myself so I'll share how I treat when I start... I hope we can figure this out too.

Supplements
I was taking SO MANY and at first I did prioritize taking most of them on an empty stomach - that I ended up with a schedule where I was taking or doing something every 30 minutes from 7am until 11pm with a few hours break in the afternoon. As I made headway, I started combining more, many dropped off.

I'm sure I was taking stuff that wasn't effective, but I had so many sx going on it was impossible to really know. Over time, I was able to understand and notice so many more things about what was going on in my body and clarity just evolved over time.

That's probably not all that helpful but just know that it will get better, simpler, easier as you get further along with tx.

-p

Thanks Evan for those suggestions but neither of those are D-lactate free, honestly I don’t know if that’s my problem I’m only going what my LLND said. And that was my plan that I had in my head when I started trying this stuff this past June, just my body wasn’t on board. I started one capsule on 9-22 and just finished yesterday, it’s Align (bifdobactterium infantis). It’s d-lactate free and one strain... simple. May try sauerkraut or some other food source

Wanted to add in Saccharomyces boulardi but I’m apprehensive on that one.

Piro, I don’t see anywhere on my test results about suspectablty to fungals/yeast, that would a very good guide as I don’t think she will give the Nystatin till the abx really begin to get to me.

I was doing ok on chlorella but I was only taking 3g once a day. Not enough to really do anything but give me a little pep

I’ve looked into Cholestyramine, from reading your info and it is expensive. I have not looked into the modified citrus pectin, but I will
Thank you for the suggestion I started back on Bentonite clay w/o husks. If the MCP looks better I’ll substitute it for the clay

There are so many to take on an empty stomach, have to really prioritize. When I was diagnosed with MS I took a lot of stuff, was always on a schedule, but I knew a lot about MS prior. Lyme is like sci-if to me, feel like an infant learning this, but I’ll get there.

And yes please do share when you begin Myco