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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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Huge improvement in two hours

maryb

iherb code TAK122
Messages
3,602
Location
UK
@MeSci
what would you consider a short course of grapefruit seed extract? and how much a day? I have 100mg tablets.
Given my intolerances I could try half a tablet.............
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci
what would you consider a short course of grapefruit seed extract? and how much a day? I have 100mg tablets.
Given my intolerances I could try half a tablet.............

I wouldn't want to make any recommendations as I only know what has helped me. I use Viridian 400mg capsules, and take one or two a day for one or two weeks. It usually sorts my bowels out, but not always, so there is presumably something else going on - something inappropriate in my diet, over-exertion or goodness-knows-what!

If only I could get an indwelling device that measures and reports all abnormalities on a continuous basis (ideally accompanied by advice on what to do about them) I would be recovered in no time! :lol:
 

Lou

Senior Member
Messages
582
Location
southeast US
Hi Hip,

How much information do you need ... I have uploaded some information from the Melbourne University.

There are 2 methods of causing leaky gut by gram positive bacteria. The first being gut fermentation, gram positive bacteria ferment sugars/starches etc. and produce lactic acid and hydrogen sulphide. Hydrogen Sulphide (a poison) causes epithelial cells to break their bonds, resulting in leaky gut, acidosis causes brain fog etc. The second method (and this is the killer) once you have fixed acidosis from the fermenting gut they change their method of metabolism, to oxidative and produce hydrogen peroxide which causes oxidative stress on the colon walls which breaks down DNA at the cellular level, and completely lysis the cells .... you still have leaky gut, but what is worse, this process causes colonic polyps which leads to cancer ........









This is some cheery news, especially since I just ordered the supplement. Not that I take all your pronouncements (as some of them come across) written in stone. Your persistent (undetectable thread and now popping up on this one) alluding to me/cfs as a fatal disease has begun to grate on me as well. I've live with it for thirty years, now, and some here for even longer. Try and place yourself in the shoes of a twenty year old, newly diagnosed, coming here and being greeted with some of your posts. Perhaps it should be colonic polyps may lead to cancer, I'm sure autopsies exist of cardiac victims full of polyps and yet without a trace of cancer.

My point, obscure as it may appear, is that something is going to kill us all. Some of us, maybe even many of us, will outlive our healthy friends. The will to live and hope for a better future has on occasion trumped even worse plights than this illness.

Cheers to you, Mate
 
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Elph68

Senior Member
Messages
598
So if as they say in @Elph68 link

'If indicated, erythromycin may assist in the suppression of the faecal Streptococcus spp.
Ampicillin/amoxycillin may be a suitable alternative if patient is reported to have adverse reactions to the
macrolids'

what happens after we take these a/biotics - how do we stop the bacteria from getting hold again?.
Hi maryb,

basically they say follow the 'caveman' or paleo diet ... Personally I follow Atkins .... but low carbs, no sugar, no bread, no fruit etc. keeps them supressed .....

Cheers
 

Hip

Senior Member
Messages
17,824
Hi Hip,

How much information do you need ... I have uploaded some information from the Melbourne University.

There are 2 methods of causing leaky gut by gram positive bacteria. The first being gut fermentation, gram positive bacteria ferment sugars/starches etc. and produce lactic acid and hydrogen sulphide. Hydrogen Sulphide (a poison) causes epithelial cells to break their bonds, resulting in leaky gut, acidosis causes brain fog etc. The second method (and this is the killer) once you have fixed acidosis from the fermenting gut they change their method of metabolism, to oxidative and produce hydrogen peroxide which causes oxidative stress on the colon walls which breaks down DNA at the cellular level, and completely lysis the cells .... you still have leaky gut, but what is worse, this process causes colonic polyps which leads to cancer.

Hi Elph68

Please can you provide some references for the above statements that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.

I was unable to find any studies or literature indicating that hydrogen sulphide or hydrogen peroxide from bacteria can increase intestinal permeability.

Though I did find this study which found that hydrogen peroxide increase the permeability of the blood-brain barrier. Note however that some probiotic bacteria such as Lactobacillus produce hydrogen peroxide, and probiotics are not known to cause leaky gut (in fact, rather the opposite).

I also could not find any literature on gut acidosis leading to more hydrogen peroxide production from bacteria. Could you provide a reference for this please.

I did however find this study that mentions hydrogen peroxide from Enterococcus faecalis might (but this is not proven) lead to colonic polyps; but I found no details of any general link between hydrogen peroxide from bacteria and colonic polyps or colon cancer.
 

Elph68

Senior Member
Messages
598
That is only one theory. There are others, and this paper provides a good (if technical) explanation of an apparently-popular one. It uses the autoimmune examples of coeliac disease and diabetes, but I see no reason why it should not apply to other autoimmune diseases. It says:



Thus they, along with others such as Maes, believe that just fixing leaky gut may be enough to turn off autoimmune activity. It could take months or years, depending on a range of factors.

Hi MeSci,

I invite you to look at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC404567/ it talks about antibodies and peptides ... I have a lot more, I am sorting through them .... I am just trying to get across that once these bugs are in the lymphatic system, they do long term and sustained damage .... even after the gut is fixed ....

So clearing them out of the lymphatic system = chance of full recovery ...
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Elph68
so how do you get them out of the lymph system? Can you explain it briefly, not really up to reading many papers.
 

Elph68

Senior Member
Messages
598
Hi Elph68

Please can you provide some references for the above statements that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.

I was unable to find any studies or literature indicating that hydrogen sulphide or hydrogen peroxide from bacteria can increase intestinal permeability.

Though I did find this study which found that hydrogen peroxide increase the permeability of the blood-brain barrier. Note however that some probiotic bacteria such as Lactobacillus produce hydrogen peroxide, and probiotics are not known to cause leaky gut (in fact, rather the opposite).

I also could not find any literature on gut acidosis leading to more hydrogen peroxide production from bacteria. Could you provide a reference for this please.

I did however find this study that mentions hydrogen peroxide from Enterococcus faecalis might (but this is not proven) lead to colonic polyps; but I found no details of any general link between hydrogen peroxide from bacteria and colonic polyps or colon cancer.
Hi Hip,

Let me get these together for you .... I have over 200 papers across 2 computers and I am not very organized.

You are right, H2O2 is produced by lactobacillus, that is how the female vagina fends off pathogens .... it becomes a problem though when they join forces with biofilm forming bacteria such as strep/enterococcus in the gut .....

I keep coming back to the bacterial strains .... and the undetectability of the infection ... Not all bacteria are equal even though the medico's consider them 'normal' ......

Cancer causing properties

http://iai.asm.org/content/80/10/3545.full

http://cancerres.aacrjournals.org/content/68/23/9909.short

http://iai.asm.org/content/early/2012/07/24/IAI.00479-12.full.pdf

http://lup.lub.lu.se/luur/download?func=downloadFile&recordOId=3931227&fileOId=4145674

And this one shows you how all lactobacillus aren't equal ....

http://jpp.krakow.pl/journal/archive/12_09_s6/pdf/55_12_09_s6_article.pdf
 
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Antares in NYC

Senior Member
Messages
582
Location
USA
Ok... Day three taking rhamnosus lysate capsules, and I actually feel worse. Not good at all.

Things that have markedly worsened today:
- Brain fog (as bad as it gets)
- Fatigue and shortness of breath
- Headaches and visual noise (light sensitivity, floaters)
- Sleep (slept quite poorly last night, worse than the night before; feeling wrecked today)
- Stomach cramps, IBS symptoms

I would appreciate it if anyone could let me know what this means.

Again, I keep my reservations that maybe the exposure to the frigid cold over the last few days may have messed me up too, and may be developing a major cold. Not sure, but can't discard it.

For the record, I did experience an uptick in alertness and thinking on the first day taking this supplement (as listed in this post). Then half way through the second day things started to go downhill.

Note that several the cytokines Del-Immune V stimulates (the ones I put in bold) are the Th1 cytokines, which of course are desirable for ME/CFS, as ME/CFS patients need to boost their Th1 cytokines in order to get better.
Hip, I'm not as versed as many of you guys in these medical terms. I have been told in the past about the relationship of cytokines and CFS symptoms, but most of it escapes my understanding.

If rhamnosus lysate estimulates Th1 cytokines, but I feel worse taking it, what does it mean? What should I look into? What tests should I ask my doctor to take in regards to my gut flora?

This morning I have woken up still feeling better than I normally would. I have had similar, yet nowhere near as strong a reaction with probiotics before but it did not last.
Hi Knackers323: are you still taking the supplement? Have you noticed any changes, any improvement or worsening of symptoms and general condition?


PS: brain-fog so bad today that it took me many passes to actually type and edit this note.
 
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Elph68

Senior Member
Messages
598
@Elph68
so how do you get them out of the lymph system? Can you explain it briefly, not really up to reading many papers.

Hi maryb,

the only way in mainstream medicine is with very powerful IV/injectable antibiotics ... Gentamycin, streptamycin, vancomycin, daptomycin .....

Good luck getting someone to prescribe them .....

Cheers.
Ok... Day three taking rhamnosus lysate capsules, and I actually feel worse. Not good at all.

Things that have markedly worsened today:
- Brain fog (as bad as it gets)
- Fatigue and shortness of breath
- Headaches and visual noise (light sensitivity, floaters)
- Sleep (slept quite poorly last night, worse than the night before; feeling wrecked today)
- Stomach cramps, IBS symptoms

I would appreciate it if anyone could let me know what this means.

Again, I keep my reservations that maybe the exposure to the frigid cold over the last few days may have messed me up too, and may be developing a major cold. Not sure, but can't discard it.

For the record, I did experience an uptick in alertness and thinking on the first day taking this supplement (as listed in this post). Then half way through the second day things started to go downhill.


Hip, I'm not as versed as many of you guys in these medical terms. I have been told in the past about the relationship of cytokines and CFS symptoms, but most of it escapes my understanding.

If rhamnosus lysate estimulates Th1 cytokines, but I feel worse taking it, what does it mean? What should I look into? What tests should I ask my doctor to take in regards to my gut flora?


Hi Knackers323: are you still taking the supplement? Have you noticed any changes, any improvement or worsening of symptoms and general condition?


PS: brain-fog so bad today that it took me many passes to actually type and edit this note.

I am just being devils advocate here .....

If the immune system is burnt out because of a continuous infection and overstimulation (as a result of an undetectable infection), then how is trying to stimulate it more going to make things better??

When the dog is dead, you can kick it all you like but it ain't going to get up and start barking again......

As I said, devils advocate ... wouldn't it be better to remove all stimulation (kill the infection) and then repair the immune system??

Cheers.
 

lansbergen

Senior Member
Messages
2,512
As I said, devils advocate ... wouldn't it be better to remove all stimulation (kill the infection) and then repair the immune system??

You need a good working immune system to eliminate an infection.

You can not remove all stimuly and if you could you would dy.
 

Elph68

Senior Member
Messages
598
You need a good working immune system to eliminate an infection.

You can not remove all stimuly and if you could you would dy.

Hi Iansbergen,

It still comes back to my question 'if the immune system has been overstimulated from an infection that is impossible to clear, how is stimulating it more going to make it better?'

A dead dog won't get up and bark no matter how much you kick it .....
 

Hip

Senior Member
Messages
17,824
@Elph68
I don't see any evidence in those studies you cited that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.
 

Elph68

Senior Member
Messages
598
@Elph68
I don't see any evidence in those studies you cited that hydrogen sulphide or hydrogen peroxide from bacteria can cause leaky gut.
Hi Hip,

I haven't got to the rest of them yet ... A leaky gut is either a relaxing of the cellular junctions OR the destruction of epithelial cells, which allows transfer of small and large molecules .... Those papers show that hydrogen peroxide creates holes in the epithelial layer = leaky gut ...

I am presenting that leaky gut comes in more than 1 form .....

I have to go through my home pc to drag out the rest with regards to Hydrogen Sulphide ....
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Lord, I'm feeling like my brain is being submerged in battery acid. I need to call my doctor tomorrow. I'm definitely falling into a major CFS crash, and fast.

Not sure which ME/CFS subgroup I belong to, but I'm thinking this supplement is not for me.

Edit: I just remembered that in the past I got similar reactions from certain supplements. Last year I got a similar reaction (although not as awful as today's) when I tried astragalus to boost immune function. I can sense a pattern.
 
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JAH

Senior Member
Messages
497
Location
Northern California
xylitol is one product .... it is poisonous to strep and breaks down biofilms .... won't completely rid them though ....

Tea tree oil ..... not sure if you should drink it though ....

Antibiotics ..... really strong ones .... moxifloxican, azithromycin, vancomycin

If you have had this a long time .... you are going to need IV abx to cure it ..... Gentamycin is probably the trick for getting the bugs out of the lymphatic system ....

Cheers.

Is there a xylitol product that you can recommend? Have you tried it, is there anyone who has tried it and can share their experience?

Thanks