Treatments that have helped patients go into remission or improve #MECFS #LongCovid - thanks to HIP!

If you have any experience with any of these interventions please comment and add your experience. This could become a REALLY valuable thread.

Full thread copied to X in images.
1/xforums.phoenixrising.me/threads/list-o… 2/x

Leaky gut and Berberine?

This figure is amazing. Let me explain. Its so obvious when you know what you are looking at.
ZO=Zonulin, Occludin, and Claudin are proteins that are involved in barrier function in the gut. Here they are stained with immunofluorescence. The regular spacing represents intact barrier function.

First line: The control is for 'healthy epithelium'.
Second line: When they add berberine to controls it gets a bit more disorganized.
Third line: When they add pro-inflammatory cytokines IFN-g and tnf-a the barrier function becomes totally disorganized.
Fourth line: When they add berberine to the pro-inflammatory condition it normalizes somewhat.

Berberine is notorious for being not an easy supplement to use, not very bioavailable and can cause side-effects.
Liposomal forms may help to counteract these issues:

When you look at MECFS management protocols (even ones that have been around for ages like Dr. Sarah Myhill's) one of the first set of recommendations is to address nutrient deficiency and mineral deficiency and heavy metals.

WHY?

Because nutrients and minerals are the co-factors that make our biochemical pathways work properly. Heavy metals are blocks to proper biochemical function. You simply cannot properly treat chronic illness without first repleting minerals and providing the body with the building blocks it needs for biochemical function.

I finally got my first set of Oligoscan results this week. I have been doing parts of the Born Free protocol (@joshual_tm) for a few months now but have been unable to get the CMA or mineral testing so was not able to personalize what I was doing. As of 2 weeks ago I am now doing ~95% of it and am committing to it for at least the next few months. I have also been detoxing mold and heavy metals and was interested to see if my detox pathways were blocked.

I am including the full Oligoscan results below. As 'non-optimal' as they are - I was actually quite pleased with the results and I think they suggest the work I have done the last few months has not been in vain (I was expecting them to be a LOT worse).

I am pretty stoked now to optimize my mineral intake based on actual data and also to be able to do monthly testing. A recent OAT and @biomesight is on the way and a CMA is also in the works.

The one big problem area was LOW ZINC and lowish COPPER. Zinc is probably THE most important mineral across the board for most issues and it is likely driving a lot of the blocks and pathway dysfunctions. Low copper is also an issue and will need to be repleted together. I will be tweaking my nutrient supplements (more D, C, Bs, E, A) and also adding Chromium, Zinc, Mitosynergy transdermal Copper, and more Silica and Molybdenum than I was using before. The mineral deficiency score is driven in part by the low zinc which affects a LOT of the body's biochemical function.

What does the scientific literature say about the risk of neuropsychiatric side-effects and Montelukast?

I am incredibly angry after a google scholar search. The consensus (even with the black box warning) is that it is a SAFE drug and common side effects are related to allergy (see pic below).

BUT!!!!

The X-poll suggests that of ~1/3 of respondents that took the drug had "awful side effects" and from reading the responses we can clearly see these were not your run of the mill mild adverse side effects.

Suicidality and psychosis as a big deal.

So, what is it about the #MECFS #LongCovid population that raises the risk of neuropsychiatric side-effects so sharply?

Because like with most safety issues to do with Pharma - adverse events have been buried as deeply as possible so unravelling this is nearly impossible as no one has done adequate studies.

Even more insidious, one of the studies I read suggested that allergic rhinitis itself drove neuropsychiatric effects - thus placing the blame on the allergy response itself.

Hmm...

So, despite the black box warning - the literature mostly suggests the pattern is NULL - invalid, weak, non-existent.

Once again patients experience gets thrown out the window.

My take on this is that pre-existing neuroinflammation likely increases RISK. This could be due to pathogens and it could also be due to mast cell dysfunction itself. There is obviously something going on here - something probably covered up and thus unravelling this from public data hard to impossible.

At least we can warn each other about risks. I am not giving medical advice about whether to take or not, however safer options for MCAS at least DO EXIST. In my mind Montelukast is not a first line medication for MCAS due to this issue. Ugh...even worse.
link.springer.com/article/10.100…

Minimally invasive vagus nerve stimulation modulates mast cell degranulation via the microbiota-gut-brain axis to ameliorate blood-brain barrier and intestinal barrier damage following ischemic stroke

sciencedirect.com/science/articl…

Where do you start? Are you reacting to everything?

Three steps are essential when starting treatment for #MECFS #LongCovid.

1. Deal with mast cell reactivity
2. Deal with GI issues

Wait, you ask, didnt you say three?

Well yes. The last, which applies to both mast cell (MCAS) and GI issues is DIET changes.

Diet for most of us is what IS driving the new food sensitivities. The only option is to cut them out. These are not allergies, these are autoimmune/mast cell reactions - you cannot keep eating this stuff and expect to recover.

Start by removing dairy, gluten, corn, soy and following the AIP Autoimmune Paleo diet or the PK diet. Add fiber.

For 1. mast cell issues - it takes a multi-layered approach. Try combinations of H1/H2 antihistamines such as certrizine/famotidine, nasalcrom, fibroprotek (supplement by algonot), luteolin, quercetin, ketotifen (and DIET)

For 2. GI issues - it takes a multi-layered approach but a combination of BPC-157, zinc-carnosine, L-glutamine, butyrate, d-lactate free probiotic mix, are a good place to start (and DIET).

Once a bit of stability has been achieved work on minerals, nutrients, neuroinflammation and the gut-brain axis will begin to normalize.

You are re-building health. The foundation needs to be built before the house.

Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI

sciencedirect.com/science/articl…

Can a colonic double your HRV overnight?

Does constipation affect the autonomic nervous system?

Could your vagus nerve stimulation not be working as well as it could due to colon dysfunction?

Yes. Yes. Yes.

*~80% of the serotonin in your body is made in the colon.
*The vagus nerve is attached to the colon and what affects the colon affects the vagus and vice versa.
*the research on this subject is scant due to organized medical misinformation but studies suggests pounds and pounds of feces gets stuck and build up over time.
*biofilms and pathogens secrete chemical environments that are inflammatory.

My research focus has taken a left turn this month as I have dived into colon health and why and how colonic irrigation might be a key intervention for those with #MECFS and #LongCovid.

I have been focused on GI pathogen load as well as pathogen load on the skin, head, nose, mouth, vagina. Targeted techniques to REMOVE this pathogen load and probiotics to re-normalize and re-constitute a protective microbiome. spend some time looking at these pictures and you start to get a sense of why the colon may be the target part of the GI for interventions and probiotics
vaga-de-emprego1.blogspot.com/2020/01/vagus-…

The brain communicates with the immune system.

It sounds obvious right? But only in last few decades has this bidirectional communication been directly studied.

The name for it is neuroimmunology. It is also known as "mind-body" - but this is not woo woo - this is hard reductionist science - brain regions associated with emotions can be studied to learn how behavioural manifestations affect immunity.

How we went so long thinking otherwise is more than a mystery to me. I mean, of course the brain sends signals to the immune system.

Chemical messengers - cytokines and neurotransmitters are released by the immune cells of the brain.

"Neuroimmunology is one of the fastest-growing fields in the life sciences, and for good reason; it fills the gap between two principal systems of the organism, the nervous system and the immune system."

This is the field that will figure out how and why vagal stimulation can be such as important treatment.

I have been exploring splenic ultrasound for almost a year now and it is one of the most exciting low-hanging fruit areas of intervention for post-viral illness. Cheap ($100-200) and takes only a few minutes a day.

See my videos and posts on splenic ultrasound and vagal stimulation.

Search string @chydorina splenic


and follow @SterlingCooley - who is a thought leader in this area as well as researchers and Asya Rolls

"Neuronal regulation of immunity: why, how and where?"
twitter.com/search?q=%40ch…
twitter.com/KevinJTraceyMD
nature.com/articles/s4157…

https://twitter.com/ChristophBurch/status/1438186882534461441

Polyphenols can play an important role in managing neuroinflammation.

But how to decide? Resveratrol, curcumin, quercetin, baicalen, luteolin, oleuoropein, rosmarinic acid etc.

This is a great paper and Table showing experimental data on use of polyphenols in neurological disorders.


Personally, I am a big fan of "Algonot" products, formulated by mast cell expert Dr. Theo Theoharidies. They cover a LOT of the bases and are one of the best (maybe the best) brands out there for those with allergies and mast cell issues.

Also check out the new curcumin formulation by @ProdromeScienceijbs.com/v20p1332.pdf

Metformin ....keeps popping up as a potential treatment for #LongCovid from so many different angles.

Not a 'you will get better for sure' treatment - that does not exist, but a 'you may be better off with this than without it and not decline as much'.

Unfortunately that IS the goal right now.

Do not decline. Don't let the dysfunctions pile up. It will take work. Dont do nothing.

Manage neuroinflammation, cellular membrane health (lipid and plasmalogen replacement), gut-brain axis and leaky gut. Stay as healthy as possible. Its a waiting game. search string for previous posts on plasmalogens:
twitter.com/search?q=%40ch…

Please be cautious: #MCAS and H2 blockers may increase the risk of hypersensitivity reactions to Amoxicillin-Clavulanate (Augmentin)

We learn by doing research. We learn by watching. The 'biggest fail' that academics can make is getting so attached to their pet theories that they are no longer objective. They literally cannot see the truth even when it is staring them in the face.

I recently tweeted that i no longer believe that Augmentin (Amoxicillin-Clavulanate) is safe enough to use in the #MECFS #LongCovid patient population without extensive medical oversight and personal health histories. I have always maintained that MCAS must be incredibly well-controlled but just how crucial this was has only recently been expanded upon.

This past week a crucial clinical study was found by @arta_semita that calls its use into question even further - especially in patients with MCAS.

In this clinical hospital based study they looked at hypersensitivity reactions to Augmentin.

It is well known beta-lactam antibiotics (Augmentin is most commonly used) are the drugs that most frequently induce systemic drug allergy (of all drugs, not just antibiotics).

BUT they found 3 additional risk factors that directly affect many people with #MECFS #LongCovid

1. That pre-existing MCAS made the chance of a hypersensitivity reaction 36% higher

2. That those taking H2 blockers had more severe reactions

3. Those taking PPIs also had increased risk

Given that a large majority of us have MCAS (even if we dont know it) this is incredibly worrisome. Given that most of us take anti-histamines this is even more worrisome.

This is one study out of dozens that have led me to the conclusion that Amoxicillin-Clavulanate is not safe enough to be taken without extensive medical oversight and emergency preparation for anaphylaxis.

This treatment was the cornerstone of the remissionbiome acute phase. I no longer believe that people should do the 'acute phase' - without extensive medical oversight including complete medical history, liver and kidney function tests. I no longer believe it is safe enough for moderate or severe patients even with medical supervision due to symptom cycling related to beta-lactams activating NF-kB via Akt - which likely causes the cycling and could result in either declines or improvements depending on where in the cycle people end treatment (@arta_semita figured out this potential mechanism for symptom cycling).

I did not know this when I started out. I started seeing MCAS reactions in many (if not most) people. This worried me. As we continued to dig into the research the picture became clearer. This was simply not as safe as I had hoped or thought it was.

Please be safe out there!

Anti-Amoxicillin Immunoglobulin E, Histamine-2 Receptor Antagonist Therapy and Mast Cell Activation Syndrome Are Risk Factors for Amoxicillin Anaphylaxis (link to paper in replies) LINK to full paper:
researchgate.net/profile/Donate…

Antimicrobials are a well-known trigger of immune reactions, autoimmune reactions, immune function changes and hypersensitivity.

Widespread under-reporting is likely to be very common especially in chronically illness #MECFS #LongCovid

Textbook: Immunotoxicology

1/nndl.ethernet.edu.et/bitstream/1234… 2/n Antimicrobials

Its dysbiosis and SIBO week at @remissionbiome!
25 Key slides for understanding gut dysbiosis, SIBO, causes, and treatment 1/n 2/n

The only person in my life (from my previous 'healthy' life) who does not treat me like something is WRONG with me is my sister.

Even when I was severe and bedridden 24/7 she managed to help me feel like me.

She was my primary caretaker and saw the worst of the worst. 1/n My parents have trouble even LOOKING at me. Even now when I have regained considerable function and look pretty good most of the time. They still see sickness and suffering. 2/n

How do you know if biofilms are an issue for you?
Without diagnostic testing we need additional clues.

If you have #MECFS #LongCovid and pathogens, viral reactivations, candida, mold issues, urinary tract or other gut infections assume some biofilm presence. 1/n How much of an issue it will be for you is harder to determine. The longer you have been sick the more of an issue it might be.

First line: diet - traditional spices/herb
Second line/third line (keep adding more): herbals, chlorella/spirulina, biofilm breakers, binders.
2/n

Why is research on #MECFS not funded?

Why does it get a fraction of the research money that rarer conditions like MS and Parkinson's get?

There is no doubt amongst the experts that #MECFS and #pwME have been the victims of a massive coordinated misinformation campaign.

1/n #MECFS is one of the most severe, life-changing, debilitating, and extreme medical conditions known but it became a 'joke' to doctors and the general public.

This was no an accident. This was coordinated and planned. But why?

2/n

The place #MECFS and #LongCovid patients find themselves in "up the creek without a paddle" is not a unfortunate accident.

The insurance companies knew that they needed to 'create doubt' at all levels, including GPs.

This is not conspiracy theory. 1/n

https://twitter.com/itmePZ/status/1713938876501536894

Pandemics are planned for by governments and extensive contigency planning is done. They game this stuff out (its a formal thing called 'war games') and this is used to create planning documents for dealing with various events. 2/n

Please read: Leaking Gut, Leaking Blood Vessels, Leaking Blood Brain Barrier
#MECFS #LongCovid


fightaging.org/archives/2023/…
dovepress.com/treating-leaky…

If you are going to watch ONE lecture this weekend, this is the ONE

Mitochondrial function and relevance for #MECFS and #LongCovid @remissonbiome

https://twitter.com/remissionbiome/status/1703105686144422100

Slide presentation: "Is #MECFS CURABLE?"
- Dr. Ron Davis
"The bottom line is that I believe it is"


Slide 1

https://twitter.com/OpenMedF/status/1701237262132846845

Slide 2