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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr. Ohhira's probiotics

wabi-sabi

Senior Member
Messages
1,446
Location
small town midwest
I think most of us are willing to explore those areas, not so much because we think they'll cure us, but in the hopes of ameliorating the symptoms we're dealing with, and often being crushed by.
I totally understand looking for hope anywhere you can find it. I used to do that too, when I was less sick. Now I don't feel able, either physically, emotionally or financially. As I said, nothing I've tried has helped in terms of supplements and herbs, and some have made me worse. I can't deal with being more ill (even while temporarily waiting for a self-treatment to wear off) and I can't deal with hopes raised and crushed anymore either. That's sometimes more painful than the physical outcomes.

Sometimes I wonder if ME/CFS comes in remitting/relapsing versions and progressive versions like MS. If you have a remitting/relapsing version, maybe you can trigger a remission. But I definitely have the progressive version. Hence being firmly planted in the pessamistic patch.

Well, good to have company in my little, often dismal, corner of the world .... hmmmmm ...... was thinking about planting some fool's bane, but dont want to obstruct our back-fence communication lines .... maybe some low-growing mug wort ....

Plant anything and everything! I love gardens and am happy to admire.
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
I totally understand looking for hope anywhere you can find it.
It's not just the looking for the hope thing ..... Ive actually been able to improve my symptoms, except for intermittent flares or spikes, and pull myslef out of a downward spiral that would have inevitably ended in the definitely permanent answer for the hopefully temporary problem. I had one foot already out that door ....
nothing I've tried has helped in terms of supplements and herbs, and some have made me worse
Oh, wabi, I'm sooooo sorry..... I wish I could think of anything that might help, I'll take a look at your profile if that's OK with you and see if my version of ME is enough like your version to make anything that helped me an even marginal candidate for helping you ....
I can't deal with hopes raised and crushed anymore either
I went thru that hellish roller coast ride for about 7 years, constantly getting worse, developing new symptoms, trusting Drs who did more damage than I can describe, or want to, desperately flogging my screaming, throbbing head and 2 functioning brain cells, trying to find my own way out of this indescribable inferno with about 30 min's a day of usable focus.


I truly do know where you are. If I can think of any way to help, anything that might be worth a shot, I'll let you know instanter.

The awful thing .... well one of the many .... about this shitty little bone-crusher of an illness is that it presents differently for all of us, and there's no one-size-fits-all fix. But a little bit from here, a little bit from there, a small increment over yonder, and eventually you realize that you're actually a bit better, and the fight gets easier to carry on ...
That's sometimes more painful than the physical outcomes.
I agree. Which is why I'm such a hopeless gratitude haranguer. Its the only way I can hold on when things go south again, because you always think, "It's over. Whatever I found that helped is over, Im back to square one, oh God, I can;t take anymore, I can;t climb that mountain again, I just can't ....".


I just have to find one little thing, on the very bad days, one little thing I can be grateful for .... and it shifts the axis a bit ....
Sometimes I wonder if ME/CFS comes in remitting/relapsing versions and progressive versions like MS.
Its possible. It felt that way with me for years, getting a little better, then slammed to the mat again with even more symptoms, then a little better, then slammed ..... I got so desperately tired of it, of not being able to trust anything, myself least of all ....


I wish I had something more than words ..... :hug::hug::hug:
 

wabi-sabi

Senior Member
Messages
1,446
Location
small town midwest
I wish I had something more than words ..... :hug::hug::hug:

That's quite alright and your words make me feel a lot better. Thank you.

Actually after two years of avoiding doctors I am getting to the point of maybe being willing to trust again... cautiously. I've had a few moderately positive experiences this year, unrelated to the ME/CFS thing. Maybe that's why they were positive? The eye doctor of all people (!) took me slightly seriously.
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
@wabi-sabi Just took a look at your profile .... salft and fluid loading can play hell with your potassium levels.

One of the second things I added was potassium gluconate in moderate amounts. I do a morning tea, with cinnamon, ginger, stevia for palatability, about 350 mgs of potassium, a tiny amount of sea salt to balance it, and some powdered bamboo, about 3/8ths of a teaspon of Bulk Supplements, for the silica in it. I mix it all up in very warm water, and down the hatch. It's actually pretty tastey, if you like cinnamon and ginger.


Later, because I couldnt take any supplements at all, I was reactive to everything (including my morning coffee fix :nervous::nervous::nervous::nervous: , which almost killed me to give up :bang-head::bang-head::bang-head::bang-head::bang-head::bang-head: ) except my weird little morning drink, including everything that I used to eat, penalty-free (for a long time I lived on mozzarella and swiss cheese with a little gouda from time to time, and water) I added 1 capsule of grass fed, antibiotic and hormone-free New Zealand desiccated liver, later upping it by one cap every week .... it's loaded with B vits, Vit A, iron, protein, minerals, and a whole lotta other stuff ... that pushed me up another little rung on the ladder ....

I'll be back with more as it occurs to me. These are NOT big, sweeping fixes. These are small, incremental, 'Gee, I think I feel a little better today' type of fixes that take a while to show their little faces.

Hang in.
 

wabi-sabi

Senior Member
Messages
1,446
Location
small town midwest
@YippeeKi YOW !!

Oh I feel you on the coffee! I can't drink it anymore either. It's interesting you mention the beef liver. I was a vegetarian for years, but now eat poultry again. Lately I have been wanting red meat so much-which I haven't eaten in years. I wonder if this is a message from my body...

What is the powdered bamboo about?

Thanks for all your help. Hugs.
 

lyran

Senior Member
Messages
183
As I said, nothing I've tried has helped in terms of supplements and herbs, and some have made me worse. I can't deal with being more ill (even while temporarily waiting for a self-treatment to wear off) and I can't deal with hopes raised and crushed anymore either. That's sometimes more painful than the physical outcomes.

There are also treatments you don't need to ingest like REDjuvenator. But I agree, everything is so expensive, at least for us who are on social security or even worse, are forced to work for few hours a day to even pay the most necessities, and to sleep for the rest of the day.

And yes, many of us has been there...a supplement/herbal that doesn't work or loses its effectiveness after using it for a while. That sucks and it happens again and again.
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@lyran I agree with the others on the Dr. Ohhira probiotics - not a good idea.

Lately, I've found a useful tool in the Viome test. It looks at what's growing in your gut and suggests foods to improve your microbiome and ones to avoid as well as gut supplements. Much more helpful than randomly picking probiotics....

You may also want to look into mast cell activation syndrome or other mast cell diseases. Prostaglandin D2 or F2 and chromagranin A are the tests to run. Some doctors will also run histamine and tryptase, but these aren't always high, so you'd case night be missed. Best wishes...
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
@wabi-sabi
As an unsolicited aside to the input on supplements, etc, if you hit the 'Like' button at the bottom right of my posts to you, or anyone elses's for that matter, I'll /they'll get an alert and know that .....1) You've seen and read the post, or that ....2) You may have a question or comment I need to see and respond to....

Otherwise, it'll be like today, when I circled back to check this thread and found your posts ..... I dont know why the 'Like' always generates an alert when other things, including direct quotes, don't always, or why threads that I've ticked the 'Watch' button on don't alert me to new posts, but there it is :xeyes::xeyes::xeyes::xeyes: ....
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
Lately I have been wanting red meat so much-which I haven't eaten in years. I wonder if this is a message from my body...
Oddly, I got the same message, and that's when I started the desiccated liver. Later, I added in red meat, 4 ozs two times a week, and that really helped. They both helped enormously.


Sadly, in view of responsible stewardship of our planet, red meat is a huge and powerful sourced of vitamins, minerals, fully utilizable protein, certain forms of sulphur, and many, many other nutrients ....

With the restaurant closures, the really tasty and affordable already shopped-and-cooked-for-me meat option is shut down for now, but it's already done it's work and I think I can coast for awhile ....

I'm a big believer in listening to your body and what it seems to be demanding ...
What is the powdered bamboo about?
Like I said, it's a powerful source of silica, which helps in building cartilage, collagen, and bones. It also seems to have some beneficial action on absorbing and utilizing minerals ....
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
Oh I feel you on the coffee! I can't drink it anymore either.
I started adding it back in about 4 or 5 months ago, starting with a 70-30 blend of decaf (which I hate using, due to the toxicity of some of th methods used to extract the caffeine from the bean) and regular ..... I gradually reduced the decaf, and am now on a 40-60 blend. So far, it's working, and I'm over the moon !!! Getting into, and thru, the day with no coffee to start it off was just hell ....
 

lyran

Senior Member
Messages
183
Now I have used Dr. Ohhira's probiotics for ~2 weeks (yes I was stubborn and kept taking it). In 11th day I noticed that it doesn't anymore cause the symptoms I mentioned before. My stools are still hard but now I'm regular. I now also notice that ~3 hours after taking it, it lifts my fatigue for some extent and makes my body feel lighter.

@lyran
Lately, I've found a useful tool in the Viome test. It looks at what's growing in your gut and suggests foods to improve your microbiome and ones to avoid as well as gut supplements. Much more helpful than randomly picking probiotics....

Thanks! Both available Viome tests sound interesting. I may have a look at it in the near future but right now I can't afford it.
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
I now also notice that ~3 hours after taking it, it lifts my fatigue for some extent and makes my body feel lighter.
I salute your perseverance, and am tickled that it paid off so well :woot::woot::woot: :thumbsup::thumbsup: !!!!

Nonetheless, I'm still not a fan of Dr Ohirra's probiotic compounds. I think what may have happened is that a few of the positive-for-your-system lacto and bifido bacterial colonies were able to establish themselves long enough to join in the battle against the bad bacteria strains and alleviate some of your symptoms .....

For softer bulk, you might try magnesium oxide. I use it when I can tell it's needed, about 3/8 teaspoon of Bulk Supplements mag oxide (cheap, and a little goes a loooong way) in a cup of warm water with a few drops of stevia for palatability. Works like a charm, doesnt disrupt your native microbiome or compete with it. It saved my life when I was battling thru crippling constipation, so painful that you could hear me screaming and sobbing from several rooms away....
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
A lot of common magnesium oxide supplements have natural arsenic contamination. It's wise to ask for the lab analysis of any magnesium supplement.

Other forms of magnesium will also loosen stools, with additional health benefits.
 
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YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
Other forms of magnesium will also loosen stools, with additional health benefits.
The only two that are extremely effective are oxide and citrate. Oxide has an additional benefit in that it's a larger molecule and goes straight to your colon which reduces the amount that's actually absorbed by the system, pretty much bypassing the stomach, and thereby avoiding possible excess mag if you're also taking another form or forms for other reasons. And most of our systems could benefit from the immediate release of oxygen that mag oxide provides, so there's that ....

Mag citrate is extremely effective as a laxative, but in my experience, much harder to control in terms of dosage effect, often leading to lengthy and unpleasant bouts of diarrhea. It's used extensively in US hospitals as a pre-op complete flush-out, not something you want to deal with in an at-home basis, and is the primary performer in most OTC laxatives for this reason.

And all forms of mag run the danger of arsenic contamination, along with cadmium and lead, so it's important to order from a company you trust, and/or request third party content analysis and certification.

Magnesium can’t be used as a stand-alone molecule, it has to be bound to something else to maintain stability, so the biggest difference in various magnesium products doesn;t come the elemental magnesium itself, but rather from the molecule it’s bound to. The larger the molecule of the substance mag is bound to, the more varied its action in the human system, and the less mag is present by weight.

In my experience, other forms of mag are not as effective, or as predictable and user-controllable in their effects, as mag oxide. For instance, at one point I was taking as much as 2000-2400 mgs of mag glycinate a day, for issues other than constipation, and it did nothing to loosen my bowels. But Mag oxide works effectively, gently, and predictably for me use after use after use, which is why I recommended it ....
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
The only two that are extremely effective are oxide and citrate. Oxide has an additional benefit in that it's a larger molecule and goes straight to your colon which reduces the amount that's actually absorbed by the system, pretty much bypassing the stomach, and thereby avoiding possible excess mag if you're also taking another form or forms for other reasons. And most of our systems could benefit from the immediate release of oxygen that mag oxide provides, so there's that ....

Mag citrate is extremely effective as a laxative, but in my experience, much harder to control in terms of dosage effect, often leading to lengthy and unpleasant bouts of diarrhea. It's used extensively in US hospitals as a pre-op complete flush-out, not something you want to deal with in an at-home basis, and is the primary performer in most OTC laxatives for this reason.

And all forms of mag run the danger of arsenic contamination, along with cadmium and lead, so it's important to order from a company you trust, and/or request third party content analysis and certification.

Magnesium can’t be used as a stand-alone molecule, it has to be bound to something else to maintain stability, so the biggest difference in various magnesium products doesn;t come the elemental magnesium itself, but rather from the molecule it’s bound to. The larger the molecule of the substance mag is bound to, the more varied its action in the human system, and the less mag is present by weight.

In my experience, other forms of mag are not as effective, or as predictable and user-controllable in their effects, as mag oxide. For instance, at one point I was taking as much as 2000-2400 mgs of mag glycinate a day, for issues other than constipation, and it did nothing to loosen my bowels. But Mag oxide works effectively, gently, and predictably for me use after use after use, which is why I recommended it ....
In my experience, magnesium glycinate and malate both happily give me the runs at not to high a dose.;)
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
Magnesium glycinate at 4 caps equaling 480 mgs will give me loose stools. Occasionally 3 caps will do the same.
Do you take those 4 caps all at one time, or separate them into 2, 3, or 4 different doses?

And do you take them on an empty stomach, or with other vits like calcium, zinc, copper, etc, or after or just before a high protein meal?

I be like, totally baffled :xeyes::xeyes::xeyes::xeyes: