Potentially harmful effects of probiotics?

[JES]

LDN could help with both sleep and pain if you manage to get a prescription. Certain antidepressants like Duloxetine will likely help too, with some risk of side effects.

Have you considered trying a different probiotic? I personally respond very differently depending on the probiotic strain I take. I have a hard time imagining that a probiotic itself would cause nerve damage, but some probiotic bacteria may affect the immune system in different ways, which could increase inflammation. "Ultra Flora Balance" contains Lactobacillus acidophilus, which CFS patient Ken Lassesen (blog link) does not recommend for CFS/ME.

 

[Timaca]

Perhaps you can buy a couple of sleep CDs to help you drift off. Sounds of ocean waves, rain falling or another sleep CD may be of help. Amazon has lots to choose from!

As far as probiotics, the Jarrow Ideal Bowel Support with L. plantarum 299v and their Baby Probiotic formula I seem to be able to tolerate CFS wise. Most probiotics don't work for me. The 299v probiotic has helped some GI pain I was having. I am still dealing with some heartburn (not overweight)...... sigh.

Best,

 

[TigerLilea]

Maybe the probiotic couldn't cause the movement disorder, but perhaps being on the wrong probiotic for years has not helped either.

I've read that you shouldn't take just one type of probiotic long term as you can upset the balance of your gut bacteria by doing so. You should be mixing them up and taking several different types and strains (ie yeast, lacto/bifido, soil based, etc).

 

[Justin30]

What about sleep meds that are used for both pain and sleep.

Like Rameron, Gabapentin, there are others but its best to ask your Dr.

 

[JaimeS]

Are you hypochloridic by any chance,@Womble ? Maybe some betaine HCl if so. Do you feel better or worse with acidic foods?

 

[JaimeS]

Also strongly agree with @Timaca regarding the fx of probiotics. I like Reg'Active Liver Support (temporary, it all dies in a week but I feel great while I'm on it) and Dr. Ohira's Probiotics Blend (longer-term). Neither make me ill.

Full disclosure, if you purchase off of the second link, I get credits at iHerb.

-J

 

[Womble]

I googled LPN, I assume you mean Low Dose Naltrexone?

Sleep CD's a good idea, but the type of pain I'm in without some kind of medication is too intense for just that.

Trying other probiotic formulas is an idea, but I don't seem to do well on a wide variety of probiotics that I have tried, and my condition is gradually worsening, so maybe just time to ditch them entirely as a possible solution to CFS and pain.

Pain meds, yes, I probably will consider that.

JaimeS, what is hypochloridic? I have a wide variety of food allergies, and strong pain reaction to certain foods, so I probably do have that.

Thanks for these suggestions, I'll talk to my neurologist about different options, although they currently want to put me on steroids so I may try that first.

 

[Timaca]

A steroid shot to my knee is what started my whole CFS problem 13 years ago!! We suspect that the steroid shot suppressed the immune function and a latent pathogen (eg bacteria--lyme or Cpn or something) reactivated because of how sick I got. Then the viruses reactivated. I won't ever do any kind of steroids ever, ever again. Even skin creams.

Now, of course, that may not be your problem, but I wanted to let you know what happened to me........

Best of luck,

 

[JaimeS]

JaimeS, what is hypochloridic? I have a wide variety of food allergies, and strong pain reaction to certain foods, so I probably do have that.

Hypochloridic means you don't make enough hydrochloric acid in your stomach to properly digest your food. In that case, a bit of hydrochloric acid in the form of betaine HCl might be helpful. Candida apparently likes a basic env't, so that may come into play as well.

A steroid shot to my knee is what started my whole CFS problem 13 years ago!! We suspect that the steroid shot suppressed the immune function and a latent pathogen (eg bacteria--lyme or Cpn or something) reactivated because of how sick I got.

Corticosteroids make me very ill, @Timaca , but some swear by them. I'm guessing the same: that there's a bit of immunosuppression going on.

-J

 

[Womble]

I am afraid to try steroids, but if suppression of the immune system is the problem, then what should I do instead?

This would imply that some treatment that helps the immune system would be beneficial to CFS patients, but I don't hear anyone getting better from something like that.

 

[Womble]

About Hypochloridic...

So right now, the things that are helping my pain are probiotics, and ENO fruit salts:

Would that support the hypothesis that I'm hypochloridic?

I take also Prilosec, but that doesn't help the pain, just helps with reflux.

 

[Womble]

UPDATE: Doctor recommending Lyrica.

 

[JaimeS]

I, too, wondered if increased symptoms were due to increased lactic acidosis... but when I bought probiotics that supposedly would not increase lactic acid, the result was the same.

The conclusion I came to personally was that we're overreacting to an increase in something very, very general -- maybe even something as general as bacterial LPS. It may cause problems no matter what bacteria you're ingesting.

That is my own personal conclusion, and I don't have any evidence to support it, save that no matter what bacteria I ingest, the result is the same, and nearly all antibiotic regimens make me feel better. It's a thought, not a certainty.

-J

For purposes of the future (lol!) I did eventually find probiotics that made me feel better, not worse. These are Dr. Ohira's brand, but it's probably more a measure of my own, individual system than that these particular probiotics are better or worse than others. I get real neuroinflammation from some strains, but not from others.

-J

 

[roller]

A steroid shot to my knee is what started my whole CFS problem 13 years ago!! We suspect that the steroid shot suppressed the immune function and a latent pathogen (eg bacteria--lyme or Cpn or something) reactivated because of how sick I got. Then the viruses reactivated. I won't ever do any kind of steroids ever, ever again. Even skin creams.

Now, of course, that may not be your problem, but I wanted to let you know what happened to me........

Best of luck,

i just read that they found an amoeba hyperinfection in a guy with rheumatoid arthritis being long-time on stereoids.
...in his autopsy...

 

[kangaSue]

I cannot see any likelihood that events in children with short bowel syndrome are relevant to people with ME.

No, not short bowel syndrome per se but intestinal permeability can result in elevated levels of D-lactate which is highly relevant.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980675/
[Translocation of bacteria and their products
Breakdown of the mucosal barrier potentially leads to translocation of microbiota or their toxic products. Two promising plasma markers, reflecting translocation of bacteria or their products, are D-lactate and endotoxin lipopolysaccharide (LPS), which are metabolic products or components of the commensal bacteria of the gastrointestinal tract. D-lactate is only produced by bacteria as a product of bacterial fermentation[10]. Baseline levels of D-lactate in healthy subjects are very low. Increased levels of D-lactate have been correlated with conditions in which the number of bacteria elevates rapidly, including in patients with bacterial overgrowth due to infection, short bowel syndrome, and mesenteric ischaemia[11]. LPS, the major constituent of the outer membrane of Gram-negative bacteria, is released by Gram-negative bacteria when replicating or dying. Increased circulating LPS levels have been related to an impaired mucosal barrier. The presence of LPS can be measured directly in blood, e.g. by the Limulus Amoebocyte Lysate assay[12]. In addition, anti-LPS antibodies can be measured by endotoxin-core antibody (EndoCAb), an indirect measurement of LPS leakage into the circulation[13]. A drop in levels of circulating anti-LPS antibodies is considered to indicate consumption of antibodies to LPS by exposure to LPS[14].]

 

[Womble]

No, not short bowel syndrome per se but intestinal permeability can result in elevated levels of D-lactate which is highly relevant.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980675/
[Translocation of bacteria and their products
Breakdown of the mucosal barrier potentially leads to translocation of microbiota or their toxic products. Two promising plasma markers, reflecting translocation of bacteria or their products, are D-lactate and endotoxin lipopolysaccharide (LPS), which are metabolic products or components of the commensal bacteria of the gastrointestinal tract. D-lactate is only produced by bacteria as a product of bacterial fermentation[10]. Baseline levels of D-lactate in healthy subjects are very low. Increased levels of D-lactate have been correlated with conditions in which the number of bacteria elevates rapidly, including in patients with bacterial overgrowth due to infection, short bowel syndrome, and mesenteric ischaemia[11]. LPS, the major constituent of the outer membrane of Gram-negative bacteria, is released by Gram-negative bacteria when replicating or dying. Increased circulating LPS levels have been related to an impaired mucosal barrier. The presence of LPS can be measured directly in blood, e.g. by the Limulus Amoebocyte Lysate assay[12]. In addition, anti-LPS antibodies can be measured by endotoxin-core antibody (EndoCAb), an indirect measurement of LPS leakage into the circulation[13]. A drop in levels of circulating anti-LPS antibodies is considered to indicate consumption of antibodies to LPS by exposure to LPS[14].]

Wish I understood what this means.

 

[kangaSue]

Wish I understood what this means.

A leaky gut can result in elevated D-lactate in blood pathology, elevated D-lactate can result in neurological promblems. The takeaway is to get the D-lactate levels measured if that has not been done.

I've asked before, but any ideas of things I can take instead?

What about trying a probiotic like Del Immune (lactobacillus rhamnosus cell lysate), all the benefit of the live strain from dead cell fragments which has been shown to help in leaky gut. I gather it's similar acting to l-rhamnosus supernatant as per this paper http://www.ncbi.nlm.nih.gov/pubmed/24480321

It was discussed a while back http://forums.phoenixrising.me/index.php?threads/huge-improvement-in-two-hours.27221/#post-415076