How do i trust?

[MeSci]

Hi MeSci

i believe the Ecoli probiotic they are reffering too is Mutaflor, which is a preperation Dr Myhill and KDM both use, i actually found quite a lot of help with it - it is a well researched strain that helps produce tyrosine, tryptophan and dopamine which is probably why i benefit on such a restricted diet. It is a very specific strain of Ecoli, but with any probiotic, they are all very unique and individual so while some may benefit, some may get lots worse, with me i cannot tollerate many of the acidophilus probiotics, but do well with certain strains of bifidus, and one strain of lactobaccilus rhamnosus. They all have various different immune modulating functions, some affect histames, some affect lactate levels, so i think for those of us with dysbiosis issues, it is a very individualised painstaking process to find the right ones

I think the main problem with breakspear is they are very allergy focused, and probably diagnose many of their patients with allergies and give them allergy shots which are very expensive and alot of people probably don't need them, this was reccomended to me but i didnt go down the route, because id done lots of researching prior, however I did start taking a mast cell stabalizer (nalcrom) because they suspected i had a mast cell disorder, paradoxically this actually made me much worse, and actually made me develop a stronger reaction to histamiese than before i took it. They also got me on a huge amount of supplements which i belive made my dysbiosis much worse. The positive i took from it was a long term prescription of powdered nystatin which has helped get some of my brain fog issues under control

Thanks for these clarifications, @trickthefox. I guess the E. coli problem is with the website description then - it makes it look as though E. coli (any strain) is a probiotic, which could lead to serious misunderstandings and potential harm to people trying to self-medicate.

 

[AndyPandy]

But i'd like to state again that what I was really looking for from my message wasn't a debate on a certain therapy or particular medicine - it was some insight on a human level on how to keep going, and how people keep the strength to push through, and wanted to know how you do that when you stop trusting the medical community - which includes top biomedical researchers and alternative practitioners alike. I just want to get better... but i feel hopeless

You might like to read "How to be sick" by Toni Bernhard, a lawyer who has had severe ME for many years. It's a Buddhist inspired guide to how to live with chronic illness.

Best wishes, Andy

 

[Marky90]

Hey @trickthefox I just wanted to say im sorry to hear youre going trough such a rough patch. Its extremely frustrating for us, that no matter how hard we research treatment possibilities, a lot wont work. Thats the inevitable consequence, when the underlying disease pathology, is not yet understood.

I just wanted to spread some hope.. Although you have probably heard of it already here on PR. The research on Rituximab for ME/CFS is extremely promising. Just hang in there, and you will be performing your music again. I would love to do a collab! Coming from a similar situation and all.

Best,
Viccie X

 

[JaimeS]

No - grapefruit seed extract comes in either capsules or liquid. I take both. You just need to check the full name of the product when searching and buying! I've never had a 'Herx' reaction from it, but then maybe I didn't have the specific pathogens that can cause that during die-off.

They do seem to have helped my gut a lot in the past, but less so recently, presumably because my gut microbiome is different now and/or I am making different mistakes with diet and/or supplements!

Huh! I've only ever seen the antimicrobial one as a VERY concentrated liquid. (My own, limited experience, but I kept searching for it this one time, and every time grapeseed was a cap, and grapefruit seed was the concentrated liquid).

[Edit: I should add that my Herx experience was personal - I had severe abdominal pain and went off sugar and on GSE. Let's say that it worked!]

-J

 

[Hip]

Have you looked into vitamin B12 injections / sublinguals, or the methylation protocol, @trickthefox? Some info here:

The methylation protocol involves taking the following supplements daily: vitamin B12 hydroxocobalamin 2000 mcg sublingual, L-5-MTHF 200 mcg, folinic acid 200 mcg, lecithin 1200 mg, and a multivitamin/multimineral tablet. Full details here: Revised Simplified Methylation Protocol (this is the last revision Rich made to his protocol before his untimely death in 2012).

Rich's study on 30 ME/CFS patients found that 27% of them achieved major improvements from methylation after three months.1 Patients found it took an average of 5 to 6 weeks before the protocol started to work. Some patients find this protocol does not work until they switch to the methylcobalamin form of vitamin B12 rather than using the hydroxocobalamin form.

Have you read about the potent antiviral Valcyte? Lots of ME/CFS patients do well on that, but it requires doctor supervision, and is expensive.


I wonder if undigested food might be due to low stomach acid secretion, which is sometimes found in ME/CFS. You can take betaine HCl supplements with meals to augment your stomach stomach acid.


This document might help guide your to other ME/CFS treatments:
Roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments

 

[trickthefox]

Methylation is actually one area i haven't explored yet, i remember doing an organic acid urine test two years ago which suggested i wasn't having methylation issues but i don't know how accurate that would be, also i am suffering extreme dysbiosis issues, which i believe is definitely a contributing factor to poor methylation (gut bacteria is hugely responsible for synthesising folate and methylcolobamin. Does anyone know if you can dose sublinguals and bypass the gut? I cannot tolerate many B vitamins or Multivitamins so i wouldn't be able to do the full methylation protocol

 

[MeSci]

Huh! I've only ever seen the antimicrobial one as a VERY concentrated liquid. (My own, limited experience, but I kept searching for it this one time, and every time grapeseed was a cap, and grapefruit seed was the concentrated liquid).

Maybe one of those US vs UK things. Here are some grapefruit seed extract products in the UK. It's even available in tablet form.

 

[JaimeS]

Might be, @MeSci! I just got my scrips from KDM, and my pharmacist spent an hour puzzling over them...

-J

 

[Hip]

Does anyone know if you can dose sublinguals and bypass the gut? I cannot tolerate many B vitamins or Multivitamins so i wouldn't be able to do the full methylation protocol

What I have done in the past is taken vitamins and other supplements transdermally. To do this, you just crush a vitamin tablet down to fine powder, and then rub the powder on a large area of skin, such as your thighs. Add a few drops of water to help the power penetrate.

High doses of magnesium are often applied transdermally in this way (but usually applied to the entire body). High dose magnesium is a beneficial supplement for ME/CFS (you cannot take high doses orally, as anything above around 500 mg of ME/CFS will cause diarrhea and flushing from the bowels).

In what way are you unable to tolerate B vitamins and multivitamins?



By the way, ME/CFS patients who cannot take probiotics do very well on a Japanese probiotic called Clostridium butyricum (brand name Miyarisan available on eBay). Unlike regular probiotics which produce lactate, Clostridium butyricum instead absorbs lactate from the gut and secretes butyrate. I found Clostridium butyricum very helpful for my IBS-D.

See this thread: Clostridium Butyricum - A Game Changer?

 

[JaimeS]

By the way, ME/CFS patients who cannot take probiotics do very well on a Japanese probiotic called Clostridium butyricum (brand name Miyarisan available on eBay). Unlike regular probiotics which produce lactate, Clostridium butyricum instead absorbs lactate from the gut and secretes butyrate. I found Clostridium butyricum very helpful for my IBS-D.

See this thread: Clostridium Butyricum - A Game Changer?

Thanks, Hip. I just got prescribed a probiotic by KDM and it's full of Lactobacillus, which I don't tolerate well. I'll have to take a look at that.

I like your idea of transdermal application, too.

-J

 

[JaimeS]

See this thread: Clostridium Butyricum - A Game Changer?

That thread intimidated me at one point with its size, and I thought, "I'll check back later, when I have more time..."

4...1.... pages....



But also it's so impressive!

Was there anyone following it from the start who can offer up some kind of summary?

-J

 

[Hip]

That thread intimidated me at one point with its size, and I thought, "I'll check back later, when I have more time..."

Yeah, that thread was started in order to summarize the info about Clostridium butyricum that was scattered throughout this even longer thread. But instead of summarizing it, the Clostridium butyricum thread itself grew out of all proportion.

For some reason, these threads where people discuss prebiotics and probiotics just become enormously long.

 

[JaimeS]

For some reason, these threads on where people discuss prebiotics and probiotics just become enormously long.

Well, I just read the first page, and to summarize:

1) Clostridium is a probiotic and it's awesome.
2) It increases butyrate while reducing lactate.
3) It's available on Amazon here, under the brand Miyarisan (Miss Clever Girl? ADORABLE.)
4) Start low and go slow (que surprise!) Some digestive rumblings are normal at the start, and whenever you up it.
5) For some who have NEVER had betterment of their symptoms, this is the one thing that has helped.

<3

-J

 

[MeSci]

High dose magnesium is a beneficial supplement for ME/CFS (you cannot take high doses orally, as anything above around 500 mg of ME/CFS will cause diarrhea and flushing from the bowels).

It depends partly on the form in which you take it. Bisglycinate and citrate are relatively well tolerated. See this page. (As usual, I would ignore animal data - they are particularly unreliable when it comes to nutrition, but they are pretty-well always unreliable - they agree with human data about as often as they disagree, so have the average predictive value of a coin-toss, i.e. zero.)

Apologies to @trickthefox for our rambling somewhat off-topic.

 

[Hip]

@MeSci
I haven't tried magnesium diglycinate. Interestingly, it says in the page you cited that magnesium diglycinate is absorbed in different areas of the gut than traditional magnesium supplementation.

Magnesium citrate always gives me a stomach ache for some reason, so I cannot use it.

I usually use plain old Epsom salts (magnesium sulphate) in a transdermal application, making up a saturated solution of Epsom salts, and then applying this liquid to my skin from head to toe (my method is explained in this post). You can also use "magnesium oil" on your skin (which is just magnesium chloride in water), but Epsom salts are cheaper and readily available in most chemists.

I suspect that the benefits of high-dose magnesium for ME/CFS arise not so much from the nutritional value of this mineral, but rather because magnesium is a potent NMDA receptor blocker, which thus reduces neural activation in the brain. So high-dose magnesium has a noticeable relaxing, anti-anxiety effect.

I was never able to achieve the same relaxing, anti-anxiety effect from oral magnesium, even from amino acid chelated magnesium supplements, because you just can't get a high enough dose orally (then again, I do have IBS-D, meaning my bowel tolerance to magnesium is probably a little lower than most people's). Only transdermal magnesium applied from head to toe noticeably reduces my anxiety and makes me feel more relaxed.

 

[MeSci]

@MeSci
I haven't tried magnesium diglycinate. Interestingly, it says in the page you cited that magnesium diglycinate is absorbed in different areas of the gut than traditional magnesium supplementation.

Magnesium citrate always gives me a stomach ache for some reason, so I cannot use it.

I usually use plain old Epsom salts (magnesium sulphate) in a transdermal application, making up a saturated solution of Epsom salts, and then applying this liquid to my skin from head to toe (my method is explained in this post). You can also use "magnesium oil" on your skin (which is just magnesium chloride in water), but Epsom salts are cheaper and readily available in most chemists.

I suspect that the benefits of high-dose magnesium for ME/CFS arise not so much from the nutritional value of this mineral, but rather because magnesium is a potent NMDA receptor blocker, which thus reduces neural activation in the brain. So high-dose magnesium has a noticeable relaxing, anti-anxiety effect.

I was never able to achieve the same relaxing, anti-anxiety effect from oral magnesium, even from amino acid chelated magnesium supplements, because you just can't get a high enough dose orally (then again, I do have IBS-D, meaning my bowel tolerance to magnesium is probably a little lower than most people's). Only transdermal magnesium applied from head to toe noticeably reduces my anxiety and makes me feel more relaxed.

I had - and intermittently still have - IBS-D, but I seem OK with 500 mg oral magnesium bisglycinate a day. My diet and supplement regime largely abolished anxiety and bowel looseness, but the latter returned after Vitamin D3 supplementation, which I think caused hypercalcaemia, and I'm still not back to consistent bowel health but I think I'm getting there.

Sorry, @trickthefox - still rambling off-topic and this may not be relevant or useful to you!

 

[butterfly7]

Hi trickthe fox are you sure you dont have salicylate and amine intolerance if so olive oil will upset you i can only tolerate ricebran i too only eat 10 foods but am very thankful for them ,As Louise Hay dosent have a specific affirmation for cfs, chronic diseases is ,I AM WILLING TO CHANGE AND GROW. I NOW CREATE A SAFE,NEW FUTURE..........nice t meet you butterfly7

 

[Beyond]

Wish I could offer some help but after roughly 5 years sick and 3 actively trying stuff and seeing professional after professional I find myself in the EXACT SAME psychological situation than you, @trickthefox.

It is funny, but from all the things I tried, aphrodisiacs were the things that had the most pronounced effect on me, apart from maybe vegetable juicing, which seems to help energy and brainfog. I recovered some libido, thats all, but is still something, given that almost everything seems to be a placebo, and my libido is amazingly diminished. Again, I recovered it only while on them...

Some stuff fixed digestion (as long as I stayed on it) , but that did not give me energy or better sleep, so these supps and diet cannot count as complete successes either. I stay on them though, at least the urticaria and eczema are almost gone now.

Just recently my mother forced me to take Prozac and Aprazolam per the suggestion of a psych she knows for a short while. That was scary, depressing and stupid, taking a benzo and a SSRI. But when nothing works, you can end in the hands of "the doctors", or "the people that knows best". Man, I pity all that suffer that destiny. And yet, I pity myself too, for I have been robbed of 5 years of my life, and counting.

---------------------------------------------------------------------------------------------------------------------------

Strange occurrence I had about having a chronic, mystery illness:

This is a game where your HP (healh points) are identified with Money, Time and Hope. This game is not played by the doctors or acupuncturists you pay, and sometimes not even by your close family, it is a solitary game, you play alone, facing death, and things worse than death. The most crucial factor is Hope, because when you lose all Hope, the game is over. When nothing works, hope is the last barrier... I find that mine is almost absent now.

 

[Lyratic]

Hello . I'm not exactly a veteran (four years this September), but I'd say I've experienced the full scope of this disease.
There’s this quote that probably everybody knows.
“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
It never meant a thing to me until recently. Until I learned to stop fighting the bad days when they came, and to seize the good ones when they showed up. Because that’s the thing: there will be good days. Days when you feel like your real self, days when you want to live for all the missed years in a few short hours. Sometimes they take a while to happen, but they always do. I live for those days. They feel like miracles.
I hope you get some miracles soon, it sounds like you need them.

 

[butterfly7]

Acceptance is paramount ,I am 46 and led a very active life ,I pray one day to be able to swim in the ocean again, walk in the woods ,the thing about this thing is that it really slows you down and you start to notice life for what it is, truly miraculous and the opportunity to create love and positivity,and as said above attitude and what you say and think are so important they can make a bad day copeable, smile and give thanks for small blessings........