are probiotics bad for people with CFS?

[el_squared]

Hi guys,

So I have Celiac, IBS, fibro and CFS and a neurological movement disorder. Today I saw a new GI doc at Stanford who is a "neuro" GI and highly in demand. I was referred to her by the CFS clinic at Stanford.

I had a bunch of things to ask her about iand at the very end I asked her what her opinion was on probiotics. I thought she would recommend them or say she had no opinion. As someone who has IBS, auto immunity, and has taken a lot of antibiotics over the years, I take a lot of probiotics. In fact, I have spent a lot of money taking VSL#3 year round for the past several years.

The doctor -- Dr. Linda Nguyen -- said: "People with Chronic Fatigue Syndrome should not take probiotics."

I didn't get a chance to follow up and ask her why she had this opinion.

Has anyone else heard this and can you explain? I'm glad to stop taking them -- they have cost me a ton of money over the years.

Laura

 

[Sushi]

The doctor -- Dr. Linda Nguyen -- said: "People with Chronic Fatigue Syndrome should not take probiotics."

I have never heard that generalization from an ME/CFS specialist. Some people probably shouldn't take them, it is best to match them with your gut bacteria balance, but as a blanket statement--never heard that. My ME/CFS specialist prescribes probiotics for me.

 

[brenda]

You shouldn't take them if you have SIBO and IBS is often an indication of this and perhaps the thinking is that ME is an indication too. I would not be surprised.

 

[halcyon]

The doctor -- Dr. Linda Nguyen -- said: "People with Chronic Fatigue Syndrome should not take probiotics."

Dr. Nguyen is the gastro that Montoya brought on to the CFS Initiative Universal Pathogen Discovery study last year, so perhaps they know something we don't yet.

 

[JPV]

It could also be that there is so little known about probiotics, especially in regards to ME/CFS, that many doctors prefer to avoid prescribing them until more research becomes available.

Many of us are so desperate to get better that we're not that opposed to using ourselves as guinea pigs, especially considering how much our condition has been maligned and disregarded by the medial community in general.

The most symptom relief I've gotten, after 20 years of constant searching, has been from taking Miyarisan (Clostridium butricum). Bear in mind that this probiotic has proven to be disastrous for some but a few of us have benefited greatly from it. So I don't really care what any doctor says. I know what works for me.

Experimenting on yourself can certainly be a harrowing path to take but I don't care to wait another 20-30 years before any of this gets properly sorted out.

 

[Gingergrrl]

@el_squared Don't know if this pertains to you but many probiotics can also worsen MCAS reactions. I used to take them for several years and now I do not take any b/c of this. They may be okay for me but am too afraid to risk it.

 

[rwac]

The doctor -- Dr. Linda Nguyen -- said: "People with Chronic Fatigue Syndrome should not take probiotics."

Lactic acid (and especially bacterial D Lactic acid) is connected to the fatigue in CFS.
If you have a weak immune system, then any bacteria can lead to overgrowth.

 

[ruben]

Hi there, I have in the last 3 days had Miyarisan (CB) arrive through the post. Started taking them and now feel considerably worse. Very bloated, nauseous and appetite down. Does anyone think it is worth carrying on a bit or should I just stop.?

 

[Timaca]

When I've asked doctors about probiotics, the ones that don't recommend them basically say that "we don't know what they do in the body."

Most probiotics don't work for me as they seem to increase my histamine issues (sleeplessness, joint pain, headaches, etc). One that I recently tried seem to make my heartburn worse. I'm currently taking Align, and while it is helping with some GI issues that I'm having, it may be making my CFS worse. Time will tell, if I choose to keep taking it......

Best,

 

[JES]

Hi there, I have in the last 3 days had Miyarisan (CB) arrive through the post. Started taking them and now feel considerably worse. Very bloated, nauseous and appetite down. Does anyone think it is worth carrying on a bit or should I just stop.?

Yeah you should probably stop, there is a long thread about CB here where the constipation/gastroparesis effect is discussed. It happened to me and so many others that it can't have been a pure coincidence.

 

[JPV]

Hi there, I have in the last 3 days had Miyarisan (CB) arrive through the post. Started taking them and now feel considerably worse. Very bloated, nauseous and appetite down. Does anyone think it is worth carrying on a bit or should I just stop.?

How many tabs are you taking per day? I started with one and slowly worked my way up to 5 over a period of several months.

I never really had any of the constipation/gastroparesis problems that others experienced. This seems to be very hit-and-miss for various sub-groups. This just may not be the right probiotic for you to take.