Modification of Immunological Parameters, Oxidative Stress Markers, Mood Symptoms, and Well-Being Status ... Venturini et al., 2019

[Numidian]

Hi all,

Hopefully I am not messing up this post - apologies in advance if I am violating the one or other of this forum's posting conventions. In any case, the authors have treated ME patients with several commercially available blends of probiotics, each of which is thought to be related to ME pathways or symptomology. My background not being medical, I usually understand only half of what is being said but the conclusion suggests widespread benefits to all but one subject (who suffered an exacerbation). I don't think I'm allowed to post the articles here but, for those of you with access to a school library, below is the reference:
Oxidative Medicine and Cellular Longevity, Volume 2019, Article ID 1684198, 10 pages, https://doi.org/10.1155/2019/1684198

If anyone wants me to post the actual protocol used, please let me know and I'll post it here.

 

[Judee]

You might also be interested in this site. https://cfsremission.com/

He talks a lot about probiotics and changing the microbiome.

 

[Numidian]

What a great website! Thanks so much for sharing it.

 

[Wishful]

I'm not surprised that they found some beneficial effects, since any reduction in immune activation in the body's most immune-challenged organ might help. However, since most of those symptoms can't be measured qualitatively, the actual improvement is questionable. Replication in larger studies is needed.

I'm less enthusiastic about probiotics as a treatment because I've tried various probiotics, prebiotics, and dietary changes, with no clear improvements. My guess is that if everyone here on PR tried their blend of probiotics, there would be some people who felt that it was worth continuing, some people who had adverse effects, and most who noticed no improvement.

 

[Numidian]

You are probably right. My main reasons for feeling enthusiastic was that a lot of the medical research that shows some positive effect uses ingredients that are difficult or impossible to procure outside of a research lab. With this study, I can copy it exactly. The second reason is that it showed improvement in all but one subjects which is rare. Lastly, I like the idea of probiotics and finding a way for my body to heal in cooperation with other organisms. But I realise this last one is not a particularly compelling reason to do anything.

Anyway, I have ordered the exact blends used and will report back after I have followed the protocol. But like you, I don't have high hopes and you are absolutely correct that a much larger study is needed to see if the results are replicated. On an almost completely unrelated note, I have just read a case study from Japan that reports successfully treating a teenage girl using "tokishakuyakusan" - a traditional Japanese medicine which I am now trying to get my hands on. Like most people here, I have tried dozens of treatments (diets, supplements, hyperbaric chamber etc.) with no luck so far and I am willing to try just about anything that appears not to involve magic. This latest article, for the optimists among us, is: Takehiro et al. (2020), Successful Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with Chronic Febricula Using the Traditional Japanese Medicine Shosaikoto. The Japanese Society of Internal Medicine 59, pp. 297-300. doi: 10.2169/internalmedicine.3218-19

 

[hapl808]

Successful Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with Chronic Febricula Using the Traditional Japanese Medicine Shosaikoto

I think I tried shosaikoto (or at least a similar kampo medicine) a couple years ago. As I recall I didn't do a very large amount, but I didn't see much effect. Can't remember why I stopped or how long I tried it - I think that was right before I started keeping a spreadsheet for my daily supplements, so I'd only have general notes. Kampo is relatively easy to take, though, so might be worth trying and seeing if you get benefits.

 

[Wishful]

Like most people here, I have tried dozens of treatments (diets, supplements, hyperbaric chamber etc.) with no luck so far and I am willing to try just about anything that appears not to involve magic.

Don't limit yourself to treatments that have been theorized or claimed to work for one or more PWME. Two of my most effective treatments were accidental discoveries, which haven't worked well for anyone else, and I still don't have a good theory for why they worked. You might try 100 different treatments listed somewhere as being helpful for ME, and have none work, yet chewing on some weed in your backyard might work well for you (and maybe no one else). I think it's important to pay attention to any positive change in your ME, which might mean that something you consumed or did recently was responsible, and maybe repeatable.

I recently ate a bunch of fireweed blossoms, and the seeds of some local umbelliferous wildflower (unpleasant aftertaste). No beneficial effects, but at least I tried.

I still like the idea that someone might find an effective treatment from some weird flavour of jellybean (unique chemicals for flavour or colour).

 

[Numidian]

I do like your approach, I admit. I've had similar results with fibromyalgia having virtually no pain nodes left and my meditation worked for no one else. So, your point is well taken and shall keep an open mind.

 

[Numidian]

You might also be interested in this site. https://cfsremission.com/

He talks a lot about probiotics and changing the microbiome.

Hi Judee, just a quick note that I went through some of the website you recommended. The most promising and easily applicable seemed to be looking for a probiotic mix that includes Lactobacillus fermentum which I did. And with all of the usual caveats, after a little less than a week, I am feeling not just significantly less pain and more energy but also a change in my emotional substrate with significantly fewer feelings of insecurity or anxiety. For what it's worth for now: thank you very much.

 

[Judee]

And with all of the usual caveats, after a little less than a week, I am feeling not just significantly less pain and more energy but also a change in my emotional substrate with significantly fewer feelings of insecurity or anxiety.

I'm so glad. Thank you for letting me know. You really made my day. I hope and pray it keeps helping you to improve.

 

[Rufous McKinney]

I'm less enthusiastic about probiotics as a treatment because I've tried various probiotics, prebiotics, and dietary changes, with no clear improvements.

I found this one brand of probiotic helpful (Mood Probiotics), see a thread around here in PR.

Months ago, I was gaining energy. I was noticeably improving a tad and those probiotics were helping cortisol cycle and HPA axis.

But I'm losing energy these days, and so the gut and digestion suffer alot, and blaming the food often is misguided.

 

[Numidian]

Oh that is so sad that you are losing energy again. I’ll look for the thread you mentioned. Long before I was diagnosed with ME I was trying all sorts of things for the mysterious and difficul-to-connect symptoms. Cutting out gluten seemed to provide relief for a few weeks before everything went back to normal.

I have not found any specific dietary change to be effective. But that could be because, if diet affects our gut microbiome, which then affects symptoms, the time between dietary change and symptom relief could be just too long. Or once certain strains of bacteria have been lost, the gut ecosystems could have been permanently altered.

Anyway, now I’m just wasting everyone’s time with my pointless musings. Sorry.

 

[Wishful]

I have not found any specific dietary change to be effective. But that could be because, if diet affects our gut microbiome, which then affects symptoms, the time between dietary change and symptom relief could be just too long.

My experience is that results from dietary change occur quickly. When I stop eating a problem food, the symptoms generally go away in possibly less than a day. A large amount of dietary fibre might take several days for the symptoms to pass. For all the treatments for my symptoms, one (prednisone) took 5 days to see results, the fibre took 3 days for symptoms to pass, and as best as I can remember, the rest had effect in less than 24 hrs.

The food poisoning (accidental) treatment permanently ended 2.5 years of type IV food sensitivity overnight. I assume that was from microbiome alteration.

I know there are some people who have had results only after weeks or months of a treatment. I generally don't bother with such long-duration experiments, because I don't consider the probability of positive results to be high enough to be worth the cost or effort. I don't know 100% for sure that green bell peppers (which I consider absolutely vile!) isn't a potential treatment for me if taken 5x/day for 5 years ... but the probability is vanishingly small. To endure bell peppers for that long, I'd need a very high likelihood of success.

Also, thinking that "maybe if I continued just one more day" for every possible potential treatment seems like a road straight to insanity.

 

[Tsukareta]

I seem to have had a significant improvement in average function recently after being stung by a wasp on my hand 12 days ago, at first it seemed to cause what felt like a 'sudden remission', not immediately there was a delay, and not the first time I've had that but usually there's no obvious cause when it does happen, and its brief.

After this feeling of 'remission' I noticed changes to my function particularly brain related stuff and then I started to experience the return of severe-like CFS symptoms, particularly after I went down to the park and back ( quite a bit energy expenditure for me lately that I consider risky ), so I had to be very careful for a few days and daily activities were giving me neurological kickback, but after this period ended my energy has been relatively good and I retained some of the changes I initially experienced.

The only other thing that I remember changing a few days before this 'remission' was starting to take probiotics again after a break of around a month where I was trying to assess whether I had SIBO, but prior to that I was taking a lot of those same exact probiotics, which is one of the most common brands, nothing special.

 

[Wishful]

Stings would trigger a certain immune response, and with ME's immune system dysfunction, it's possible that the right sort of immune activation might push things closer to normal function. It certainly won't work for everyone, since we're all different. A bumblebee sting (I was rescuing her from drowning!) didn't noticeably affect my ME.

 

[Numidian]

I have found that when I touch stinging nettles or place them on the affected area, the perceived pain (both fibro and ME) decreases significantly but returns again a few hours later. I have not noticed a change in available energy, though. I imagine it could also be related to the immune response.

 

[Rufous McKinney]

I know there are some people who have had results only after weeks or months of a treatment. I generally don't bother with such long-duration experiments, because I don't consider the probability of positive results to be high enough to be worth the cost or effort.

ten months...on chinese herbal teas (about 37 herbs in there)....I had given up but since the tea made me feel a bit better, I continued with it. Figured the rash wasn't going away. (covering 1/3 of my body, monstrous looking)

But it took ten months and then suddenly the horrible rash vanished and never returned.

 

[Tsukareta]

This was probably the first time i've been stung in the 7 years of having the CFS, so I don't have much data for comparison, my situation this year has been quite unlike normal CFS in a way that I can't explain, I have had food chemical and mold sensitivities on a high level I never experienced before, what seems like leaky gut, histamine intolerance / release and also sore weak muscles, almost no exercise tolerance or willingness to do anything but conserve energy, but very few of the normal CFS related sensations and patterns that were a daily event up to this year, as if this is another mode of CFS, or another disease process that masks it or supercedes it somehow, I think thats why the wasp sting has had an effect, it somehow re-activated my moderate CFS pattern which is how I normally feel.

Now when I trigger PEM I feel sleepy right after I stop the activity which is a good sign, whereas a few weeks ago there would often be a delay of 4 hours or more where I would not feel much difference, then it would suddenly hit me. I also seem to tolerate the air in my house better than before, I don't immediately get a headache after a few breaths in a particular room that i've been trying to clean up ( my house has high levels of mold in the air and dust, I did an ERMI test, but the sources are unknown, possibly just the sum total of many places and objects ).

I wont describe the details but something that I do that reliably triggers a certain type of heavily debilitating PEM well I was only doing that once a week or less in the past few months and my brain would feel burned out for days after and i'd have no interest, that suddenly changed now and it seems I can do the activity 2 or 3 times more than usual as well as leaving the house which is something I previously minimized for fear of aggravating my leaky gut / food allergy reactions. I don't think probiotics or diet would have had such an overnight effect, although I have been eating way more carbs and sugar for 4 weeks after I did candida elimination in June and wasn't convinced of the benefits. I still avoid gluten though, its special foods I've been eating that are high protein, low sugar, vegan etc.

 

[Rufous McKinney]

This was probably the first time i've been stung in the 7 years of having the CFS, so I don't have much data for comparison,

I get a type of gastroperesis, which might be a reactivation....and when it occurs, my digestion improves for about ten days. It all starts to reverts back after about ten. Something gets starved out, or not fed during the post gastropersis event.

 

[Tsukareta]

I get a type of gastroperesis, which might be a reactivation....and when it occurs, my digestion improves for about ten days. It all starts to reverts back after about ten. Something gets starved out, or not fed during the post gastropersis event.

Would that feel like bloating ? when my exercise tolerance and sore sensitive muscles got really bad in march I rapidly developed a very slow transit of material though my system and I was only going to the toilet once a week which was bizarre. Its improved back to normal since then and I have no idea why, taking all the herbs and stuff that are meant to treat Candida seemed to make all the difference in getting it back all the way to normal, but I have no idea why, if candida was my main issue then all the sugar i've eaten lately should have made my health worse. There are a lot of acids in those protocols e.g. Betaine HCL so that could be a factor.

Do you or have you ever known anyone with CFS to have random periods of high stomach gas production, in my case hydrogen ? its not everyday and it doesn't reliably correlate with specific foods, I suspect its related to energy levels. I tried checking for SIBO and found no convincing evidence, I think if I have SIBO its only occasionally. With the AIRE 2 device i've been able to measure my levels finally and the patterns are definitely odd, sometimes low all day sometimes high all day, on the same sort of diet. Sometimes when i'm feeling really 'fried' and tired out I will check and see that my gas levels are higher than I realized.