Stuck on what to try next

[outdamnspot]

I'm sorry to post again, but I'm feeling a little indecisive on where to proceed next with my gut. My original stool test from Oct showed a strep overgrowth, with a severe undergrowth of lacto and bifido species. Subsequent to that, I did a 2-week of of Flagyl and Ampicillin prescribed by a gastro with an interest in dysbiosis/FMT (hence, my belief he knew what he was doing). However, a CFS doctor I saw last week claims the Flagyl most likely nuked my gut and has a) invalidated the old test results, b) probably worsened my dysbiosis. He wants me to redo the test but I can't afford to at the moment.

I have been on a general downward slide anyway, so it's hard to know what has hurt or helped. The most distressing symptom for me is 'adrenal fatigue', whereby I just feel extremely weak and like my body is pumping out adrenaline to compensate (which is rather unpleasant); I feel weak, confused, have to eat every hour or so, waking up frequently etc.

What gave me hope was the fact that I tried a herb recently, as recommended by Ken from CFSremission, called Haritaki. It supposedly kills dysbiotic overgrowths. However, I felt a drastic reduction in inflammatory symptoms, had more energy, stress tone improved etc. It did worsen some symptoms -- such as 'blank mind' and parasthesia -- and supposedly can kill (good) E. Coli, so I wonder if that may be why. It's a pity, because otherwise I would try to remain on it indefinitely.

Since stopping it 2 days ago (after a 4 week course) I'm back to feeling near-death again, with adrenaline attacks etc.

Here's what I've tried to date, which had some beneficial effects (though outweighed by negative):

1. Miyarisan and S. Boulardii -- both improved sleep a lot, improved anxiety, almost immediately calmed down adrenaline .. however, both also make me profoundly apathetic (to the point of worsening depression).

2. Symbioflor 2 -- robust improvement in physical/'adrenal' health, but did a total number on my mood: I had crying fits, spaciness/derealization, cognitive impairment etc. that didn't abate after 2 weeks on it.

The other probiotics I've tried had no beneficial effects.

So here are my options at the moment:

1. Try another herb like Neem (one of Ken's recommendations) .. and hope for a physical improvement, as per the Haritaki. If there are any other herbs worth looking into, let me know.

2. Try Mutaflor, based on my partially-positive reaction to Symbioflor 2.

3. Start one of the three probiotics I currently have at home: Align, Culturelle and Reuteri Pearls, though I wasn't sure which might be the best to begin with.

Sorry for the long post, and thanks!

 

[outdamnspot]

One other thing I've wondered is whether herbal antibiotics kill beneficial strains. For example, if I do try a probiotic and feel okay on it, is it counterproductive to then add in herbs (or to cycle off the probiotic onto a herb etc.)?

 

[Mary]

@outdamnspot - I can't answer all your questions but here is what has helped me with my adrenals and my gut.

For my adrenals, adrenal glandulars like Drenamin PMG or Drenatrophin by Standard Process have been very helpful. I've taken them for years and adjust my dose as needed. I also take pantothenic acid (in addition to a B complex and other Bs), which is crucial for adrenal health.

Re my gut: low stomach acid can cause or contribute to gut dysbiosis as stomach acid helps prevent overgrowth of certain bacteria; my stomach acid is low and taking betaine HCL with pepsin with meals helps. Also, kefir (Trader Joe's brand, also something comparable in my grocery store) has been very helpful. It helped stop diarrhea I had for 6 months, within a week. I now only have to drink it 2 to 3 times a week. I had tried several different probiotics for this, from cheap to expensive, and nothing helped until I started the kefir. I haven't been retested for dysbiosis, but going by my symptoms, am much improved.

 

[Basilico]

Since stopping it 2 days ago (after a 4 week course) I'm back to feeling near-death again, with adrenaline attacks etc.

Here's what I've tried to date, which had some beneficial effects (though outweighed by negative):

1. Miyarisan and S. Boulardii -- both improved sleep a lot, improved anxiety, almost immediately calmed down adrenaline .. however, both also make me profoundly apathetic (to the point of worsening depression).

2. Symbioflor 2 -- robust improvement in physical/'adrenal' health, but did a total number on my mood: I had crying fits, spaciness/derealization, cognitive impairment etc. that didn't abate after 2 weeks on it.

2. Try Mutaflor, based on my partially-positive reaction to Symbioflor 2.

3. Start one of the three probiotics I currently have at home: Align, Culturelle and Reuteri Pearls, though I wasn't sure which might be the best to begin with.

My vote would be to start with Reuteri Pearls and then try Mutaflor.

My husband has CFS and a very long history of IBS-D and general super messed up digestion and GI distress.
After a particularly stressful move, he started getting really intense panic attacks, often in the middle of the night (they would often be triggered by him getting out of bed to use the bathroom, and we realized that it was somehow linked to blood pressure and POTS issue).

He even ended up going to the emergency room because during one of these attacks he couldn't breathe and was afraid that he was going to asphyxiate. He had every test under the sun run to figure out what was happening, and we even tried acupuncture. We eventually understood that due to his POTS, every time his blood pressure dropped, his overactive vagal nerve was triggering a panic attack and releasing a massive amount of adrenaline.

It wasn't until he started Mutaflor that not only did his GI problems get much better (to the point where he can almost eat and drink anything now) but those weird vagal nerve panic attacks just stopped.

We were surprised that something like Mutaflor could have an effective on this issue, but the more I read about how there are seratonin (and other) receptors are in the GI system and so much of the brain is actually controlled by the gut, it started to make sense.

I don't know how long it takes for Mutaflor to work it's magic. My husband took 4 pills per day for close to a year (toward the end he tapered down to every other day or sometimes 2 per day) because he wanted to make sure he gave it a really good chance to colonize. Now, he just takes it once in a while, mainly as a 'booster' just to make sure. I think the directions on the box are to take 4 pills for 2 months.

A little while ago, I ate some fermented sauerkraut that was't quite right, and I think something negative colonized in my gut, because I started having quite a bit of GI distress for a few days. I had Reuteri Pearls on hand and took them since I didn't have Mutaflor on hand, and my GI system normalized pretty quickly. I was impressed because I didn't think it would have such a noticeable effect. I'm now doing a round of Mutaflor, myself, and it's having a pretty positive effect on my constipation issues.

We both used Symbioflor 1 & 2. Symbioflor 2 (which is E. Coli Nissile 1917) is supposed to be the same strain as what's in Mutaflor, but it didn't seem to work for either of us like Mutaflor does. I think it would be worth trying Mutaflor, as I'm convinced something about it is different from Symbioflor 2.

I don't know if it matters which you start with; since you have the Reuteri on hand, why not start with that?

You mentioned that you had emotional/mental reactions to several probiotics. Since probiotics play an important role in neurotransmitter production, this isn't that weird. Are you taking anything else that can have an effect on your brain chemistry like 5HTP or St. John's Wort or SAMe or anything like that? If you are, you might want to consider suspending them while on the probiotics.

 

[Pendergast]

2. Symbioflor 2 -- robust improvement in physical/'adrenal' health, but did a total number on my mood: I had crying fits, spaciness/derealization, cognitive impairment etc. that didn't abate after 2 weeks on it.

The other probiotics I've tried had no beneficial effects.

Hi @outdamnspot ! Could I ask you how many drops of Symbioflor 2 did you take?. I'm now taking 40 drops/day but I'm feeling nothing on it, maybe it isn't enough dose?

Also, I tried VSL3, that is which Kenny De Meirleir usually prescribes but again it did nothing for me and it's expensive. Did you try it?.

Like you, I'm thinking of giving the Neem a shot and I have some Artemisa herb to make infusions. I tried it some years ago and gave me fever (38.5°C) which I hadn't had since 2009. So I want to give it a new try soon and see what happens... I think the Artemisa's active ingredient ( Artemisinin) has some evidence as an antibugs stuff.

These own decisions about what to experiment with, is making me more stressed. All this stuff is frustrating but If we don't try something and feel that we are doing nothing, that's worse...

Good luck and please keep us updated!

 

[outdamnspot]

@Basilico Thanks for your help. My concern with the Reuteri pearls are that they contain Acidophilus (it would be nice if I could just find a straight-up L. Reuteri product -- I tried one by Biogaia, but I believe it produces D-Lactate [Ken said either human or animal strains do so; I can't recall which, exactly]). Anyway, I took it before bed last night and feel more depressed today, but I'll give it a few days, since I'm still waiting for the herbs and Mutaflor to arrive.

I'm not taking anything else that effects neurotransmitters.

One concern I do have though re: Mutaflor is the fact Haritaki (which I did find beneficial) supposedly kills E.Coli. So it seems wasteful to try Mutaflor, then cycle back onto it.

That's why I'm considering maybe trying Neem next, then doing another cycle of Haritaki, then giving the Mutaflor a shot.

 

[outdamnspot]

@Pendergast I was taking 10-15 drops of Symbioflor 2. I'm not sure why it affected me so strongly. I haven't tried VLS3; it's too expensive for me.

I know what you mean -- I get tremendously anxious about trying to make the 'right' next decision, but usually once I make the leap, I feel better, because even if I feel worse, it's something I can cross off the list.

 

[Basilico]

@Basilico
One concern I do have though re: Mutaflor is the fact Haritaki (which I did find beneficial) supposedly kills E.Coli. So it seems wasteful to try Mutaflor, then cycle back onto it.

That's why I'm considering maybe trying Neem next, then doing another cycle of Haritaki, then giving the Mutaflor a shot.

This makes sense - to take Mutaflor after you've completed taking something that is likely to kill of your good E. Coli (assuminng that you definitely have decided on taking Haritaki).

This is a tough one, when taking something that you likely need causes extra problems. Have you by any chance tried taking inositol? I'm not sure that it would help, but was used by Goldstein and there is research that shows at 16g/day to be as effective as antidepressants. Maybe that could help to right whatever imbalance happens when you take probiotics? Might be interesting to see if it does anything for you.

https://www.ncbi.nlm.nih.gov/pubmed/7726322

 

[Timaca]

outdamnspot~
I can relate to you on several levels....having several probiotics in the refrigerator that are untried. Being afraid to try something because of the possible negative consequences (which I seem to get a lot of) and having GI issues.

Most probiotics have not worked for me. Maybe initially, but not long term. Currently what I'm taking which has at least helped with the GI pain and bloating is Manuka Honey. There are various brands and various arguments as to what honey is authentic etc, but the two I've used (which taste vastly different) are Manuka Doctor and Manuka Health. It is expensive, $20-$50 a jar (8 ounces) depending on the *strength*. I started with a very small amount....like 1/8 teaspoon and now take between 1/2 and 1 teaspoon a day dissolved in room temperature water. It has helped me more than any probiotic. You can read reviews on Amazon. I still battle heartburn however....

Best,

 

[outdamnspot]

I tried Reuteri Pearls before bed two nights ago; last night, I took the Reuteri Pearls together with Culturelle.

I slept really well and had improved dream recall, but have felt 'hungover' and depressed all day -- it's a kind of low-grade, apathetic, low-self-worth depression, as opposed to my usual revved-up state. I also have an awful taste in my mouth.

I'm becoming less and less patient with supplements and am not sure if I would give this a week (or more) to settle, though it is nice to be able to sleep for a change. My arms are extremely weak (to the point where typing is difficult) and I'm wondering if that relates to D-Lactate?

 

[outdamnspot]

Would Oil of Oregano be okay to try (possibly in place of Neem), or can it worsen dysbiosis?