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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

Elph68

Senior Member
Messages
598
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.
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 .....

My question again ....
 

Elph68

Senior Member
Messages
598
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
Hi JAH,

I chew the gum all day .... I have had a sore throat for over 2 years .... now I can eat chilli again ....

cheers.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@Elph68 @Hip
well that puts antibiotics out for me.re - aminoglycosides - streptomycin etc

I was told by a well informed member on PR that I carry a mutant? gene which means that taking these type of a/biotics can cause in deafness. I've checked out all the links and it is the case. Another good reason to have genetic tests?
 

lansbergen

Senior Member
Messages
2,512
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?'
.....

It won't. The parts that are overstimulated must be calmed down and the parts that fail must be activated.
 

knackers323

Senior Member
Messages
1,625
Hi Antares
No I stopped taking it after a few days because I am looking into other things but I will come back to it.

Sorry to hear it isn't working for you
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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 ...

Where is your evidence that the bugs are in the lymphatic system?
 

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.............

Just want to warn that grapefruit seed extract is reported to interact with some medications, notably warfarin. There's some interesting info about grapefruit seed extract here.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@MeSci
thanks = interesting link, I've avoided citrus since food intolerance testing so I suppose I can only try it and see. maybe even less than half a tablet I think.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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

I use xylitol as a sweetener in tea and coffee. I also sometimes eat chocolate sweetened with xylitol. I haven't noticed any adverse effects, and am using it as part of my low-carb diet. No idea if it helps with my gut flora as the diet and supplements and periodic courses of grapefruit seed extract are hopefully doing that.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
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 ....

Terminology re the Immune System causes easy confusion. In Alternative medicine lymphatic system usually refers to lymph nodes and lymph vessels (or channels) - this are only the circulatory part of the system. In medicine lymphatic system refers to the whole immune system thus causing a lot of confusion. It really is a failure of science that the same terms refers both to the whole immune system and to the lymphatic waste disposal system.

The lymphocytes referred to in that article are white blood cells (or immune cells) but more likely in blood than lymphatic fluid. The cells that line the lymphatic vessels do not seem to be referred to as lymphocytes in order to avoid confusion.

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

Without clearing the system of these bugs full recovery does seem unlikely if for no other reason than they put the system under stress and demand energy that is under short supply. I would caution against arguing that this action alone will produce full recovery with your doctor though. It takes a package of measures to improve long term ME such that the whole system starts to work and failures in one part do not undo the good you are attempting elsewhere.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
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.


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.


The (theoretical) answer to this one is dead easy the immune system is in the first place under-performing as such the infections concerned are at a low level. They are harder to detect because our immune systems seem to fail in a general order and medicine expects them all to be working as normal. Because of this our immune system fight these infections well enough to stop us dying (the common cold killed thousands of South Sea Islanders when first introduced) it keeps them at low levels. However our immune system does not work well enough to (almost) eradicate them as in normal health.

If you have infections (especially any virus) over a certain time you should fever most of us don't. That would be a single example of our immune dysfunctions.

The next thing that needs to be understood is that many symptoms of infection are not directly caused by the infection, but by the immune response (e.g. fever, pain, runny nose, green snot). This means that when you repair immune response that feeling worse for a short while is scientific certainty. Being more healthy may actually make you feel worse until the immune system does it's job. The other idea suggested of a 'die off reaction' may also be part of this issue but I have not seen sufficiently solid proof that (however possible) it's occurring.

My personal opinion is that we all need to deal with the mitochondrial stuff first and doing them systematically. I personally am not fatigued much more than that I am fundamentally short of energy. Improving anything else before improving energy production seems likely to worsen recovery symptoms.

So far everything that has worked for me in any substantial way has produced small improvement followed by a 'recovery crash' followed by more substantial improvement.
 

Hip

Senior Member
Messages
17,824
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 only come across one mechanism for leaky gut: the cellular junction mechanism, where intestinal permeability results from a dysfunction of the tight junctions bonding adjacent epithelial cells together.

Would you have any weblinks that detail this other mechanism of creating leaky gut you mention — the "destruction of epithelial cells" mechanism?
 

Elph68

Senior Member
Messages
598
Where is your evidence that the bugs are in the lymphatic system?

Hi MeSci,

Personally, all my lymphatic nodes in my neck and groin are enlarged and palpable. so they are in my lymphatic system. And this is all part of what I am putting together for you ... as it is what you asked for ... a referenced document as I now have not had any brain fog for 6 weeks :)

Strep Mitis group pathogenic strains produce and extracellular protease which causes an inflammatory response and IgA antibodies (this causes the gluten intolerance) but the immune system can't eradicate the bacteria (I have papers on this). So when you have leaky gut, the bacteria break through the epithelial barrier and have direct access to the lymphatic system. The immune system can't stop them, so they would take up residence, produce these protease and exotoxins (such as LTA lipoteichoic acid), and hydrogen sulphide which would damage the lymphatic system internally ... now I believe NK cells are produced in the lymphatic system?? (I am sure I will be told if I am wrong) .... Therefore this action is an explanation as to why the NK cell count is messed up in ME/CFS sufferers

I am currently researching to see if anybody has ever picked this up scientifically before.
 

Elph68

Senior Member
Messages
598
@Elph68
You need to keep an eye on kidney function whilst on vancomycin.

Thanks maryb .... none of those abx are real good for the kidneys ....

I just had 4 weeks of oral vancomycin to fix my gut, it sure cleared my brain fog .... see what happens from here ...

Cheers.
 

Elph68

Senior Member
Messages
598
I have only come across one mechanism for leaky gut: the cellular junction mechanism, where intestinal permeability results from a dysfunction of the tight junctions bonding adjacent epithelial cells together.

Would you have any weblinks that detail this other mechanism of creating leaky gut you mention — the "destruction of epithelial cells" mechanism?
Hi Hip,

any destruction of epithelial cells causes an inflammation process and can create tears in the bowel lining, resulting in a leaky gut ..... here is a link to hydrogen sulphide ....

http://www.ncbi.nlm.nih.gov/pubmed/20120018

http://mcr.aacrjournals.org/content/4/1/9.long
 

Hip

Senior Member
Messages
17,824
any destruction of epithelial cells causes an inflammation process and can create tears in the bowel lining, resulting in a leaky gut ..... here is a link to hydrogen sulphide ....

http://www.ncbi.nlm.nih.gov/pubmed/20120018

http://mcr.aacrjournals.org/content/4/1/9.long

Those two studies refer to the genotoxic effects of H2S, but don't mention anything about leaky gut.

And you are again stating that destruction of epithelial cells leads to leaky gut, but where did you read this? Because I have not come across any such mechanism.
 

Elph68

Senior Member
Messages
598
Those two studies refer to the genotoxic effects of H2S, but don't mention anything about leaky gut.

And you are again stating that destruction of epithelial cells leads to leaky gut, but where did you read this? Because I have not come across any such mechanism.

That is correct Hip, ...

Once you have punched holes in the bowels epithelial layer, what do you have???
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi MeSci,

Personally, all my lymphatic nodes in my neck and groin are enlarged and palpable. so they are in my lymphatic system. And this is all part of what I am putting together for you ... as it is what you asked for ... a referenced document as I now have not had any brain fog for 6 weeks :)

Strep Mitis group pathogenic strains produce and extracellular protease which causes an inflammatory response and IgA antibodies (this causes the gluten intolerance) but the immune system can't eradicate the bacteria (I have papers on this). So when you have leaky gut, the bacteria break through the epithelial barrier and have direct access to the lymphatic system. The immune system can't stop them, so they would take up residence, produce these protease and exotoxins (such as LTA lipoteichoic acid), and hydrogen sulphide which would damage the lymphatic system internally ... now I believe NK cells are produced in the lymphatic system?? (I am sure I will be told if I am wrong) .... Therefore this action is an explanation as to why the NK cell count is messed up in ME/CFS sufferers

I am currently researching to see if anybody has ever picked this up scientifically before.

Lymphadenopathy (swollen lymph nodes) is a standard symptom of immune activity, e.g. as a response to infection or, in autoimmunity, an autoimmune flare. It is a typical symptom of ME/CFS. It does not mean that any infection is IN the lymphatic system, let alone one that can't be shifted. It might be, but there is no evidence that I know of that says it is. There's quite a good primer on the immune system including the lymphatic system here.

We appear to have sluggish/blocked lymph ducts, which could be one reason why our lymph nodes are swollen so much of the time. Lymph is normally moved along the lymph ducts by skeletal muscle contraction, so that one can see how lymph flow might become sluggish if someone is physically inactive.

That's the basis for manual lymphatic drainage/massage techniques (e.g. the Perrin technique) which some people find symptomatically beneficial - they purportedly move the lymph along the ducts, which could flush out toxins and reduce swelling.
 
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