• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

The Naviaux Protocol (Remove the Trigger / Refill the Tank / Flip the Switch)

Well spill the beans then. How are you specifically going to cure yourself from this easy to fix disease. We are all waiting patiently to hear. My physcology is fine....i have an organic energy issue. I have high lactate....pem....muscle fatigue...what physcology i need to fix that.
Lactate? I'm pretty sure that has to do with 'bad' gut bacteria converting food into toxins. (I'll have to double check that though) or do you mean lactic acid?

Did KDM in brussels mention any of the things i have especially regarding the whole pacing thing? If not then that is a little concerning.
 
Well spill the beans then. How are you specifically going to cure yourself from this easy to fix disease. We are all waiting patiently to hear. My physcology is fine....i have an organic energy issue. I have high lactate....pem....muscle fatigue...what physcology i need to fix that.
What % of recovery are you at?
 
Well spill the beans then. How are you specifically going to cure yourself from this easy to fix disease. We are all waiting patiently to hear. My physcology is fine....i have an organic energy issue. I have high lactate....pem....muscle fatigue...what physcology i need to fix that.
Also if you're on UK time and as a regular habit you are sat on forums or anything apart from asleep at 11pm , then that is pretty pure Circadian Rhythm habits. bed at 9pm latest is optimal. If people arent being optimal in every single aspect of their life then i dont think its wise to expect optimal results, regardless whether you're bed bound at 5% of recovery or feeling pretty decent at 90% of recovery.. dedication and commitment to doing all these little things until the end is essential. And keeping them up when recovered is def important. One hour of sleep before 12 is equivalent to two after 12. This is huge and be glad there is room for improvement there! Meditation is 4-5 times MORE rejuvenative and resotrative than sleep is. There is science showing that. So plenty of Meditation and deep breathing stuff the better. (I do roughly 2-4hours every single day)
 
Last edited by a moderator:

JES

Senior Member
Messages
1,320
If you're getting PEM you are constantly asking more of your Mitochondria than what they can manage. (This is basic pacing people) A quick note on pacing- if you regularly crash/get PEM/lactic acid you are askint TOO MUCH of your body and you are preventing your body from repairing. (Im not saying doing this one thing alone will repair you to 100%) I've ony been researching for 7months and one of the first things i learned was regarding PEM and pacing, thats simply part of a basic foundation.

Pacing is what more or less everyone on this forum that have PEM are already doing from my understanding, it has been known since forever that it's the best strategy to cope with PEM symptoms.
 

fireflymd

Senior Member
Messages
110
Dr Robert Naviaux has suggested a three phased model for reversing the cell danger response (CDR), and recovering ME/CFS patients from a dauer hypometabolic state. I haven't seen it discussed on a dedicated thread, and I thought it was worth delving into.

Note: This is based on Dr Naviaux's 5/25/17 call with the CDC, his 2016 Hypometabolic study, and his theoretical model for future treatment. He is not a practicing clinician, and it's not an approach he's currently recommending.


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

The Naviaux Protocol
  1. Remove the trigger. This would presumably mean treating any underlying pathogen (antivirals, antibiotics), treating autoimmunity or autoinflammation (immunosuppressants), unbinding toxins (metals, mold), or avoiding certain environments (mold, chemicals, etc).

  2. Refill the metabolic tank. Naviaux specifically implicates NAD+, NADPH, Glycerol, and Citrulline as key metabolites that rise when nematodes (C. elegans) exit hypo-metabolism (See slide below). On the CDC call he also mentioned that there are hundreds of others that his research data is identifying.

  3. Flip the switch. Naviaux mentioned that he's raising funds for a low dose trail of a drug called suramin in ME/CFS patients (antipuringeric therapy). Suramin is an IV pharmaceutical used in African sleeping sickness that was shown by Naviaux to reverse autism in mice (1a) and more recently in human children (1b).

    I've seen no mention anywhere online of any ME/CFS patient ever trying suramin. Note that it has quite a nasty side effect profile, which is presumably why Naviaux plans to test in low doses.

    Interestingly suramin has also been looked at for treating RNA viruses (2) and cancer (3).

Ironically, when I first started to develop brief periods of severe fatigue, and did not know this was the beginning of the entity ME/CFS, I would refer to these episodes half-jokingly as a bout of "African Sleeping Sickness".
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
So I'm around 4 months into my Famvir trial, and suddenly have the same dang sore throat I get every Spring that precedes a flare (presumably of EBV since that's the only virus we've found in me that looks active). Last year, my flare happened exactly a year ago.

Since I've been sick, I flare every year around this same time and stay sick into summer. Is it possible that my body IS flipping the switch this time of year, and that the reduced resources spent on immunity result in a viral flare?

Something happens between Jan. and Feb. with my immunity, I just don't know what it is.
 

Tally

Senior Member
Messages
367
Is it possible that my body IS flipping the switch this time of year, and that the reduced resources spent on immunity result in a viral flare?

Something happens between Jan. and Feb. with my immunity, I just don't know what it is.

Same for me. Dec., Jan., Feb.

Are you in the Northern Hemisphere? It could be a million things: Viruses and bacteria are the most active this part of the year (thus the flu season among others), less vitamin D from the Sun, more mold, colder temperatures, gut changes caused by seasonal diet variations, less phytoncides (which supposedly affect NK Cells).....
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
I am in the northern hemi.

I don't ever get sick in Dec. or early Jan. It's always in the last week of Jan. or the first week of Feb.

I hardly ever get flu or colds. Well, only one in recent memory *just* after I started anti-virals, I had a normal cold in Oct. but seem to have returned to super immunity as I've not caught anything since. This in spite of my husband being sick a few times over winter.

I am in an area where there's not alot of mold (desert SW) and my house doesn't have known mold issues. Last year I tanned all winter and my D level was quite high when I got sick Feb. 2 (I remember because I had a sudden onset last year). This year I didn't bother with tanning as it seemed to not have benefits for me, but I take plenty of D3.

As well, I am outdoors quite a bit daily as I live on a small farm & get as much sun as I can. This year I have been outdoors alot because of the warmer temps and dry climate.

I am just not finding anything in particular that explains the trend. And especially nothing to explain why it's happening again when I am on AV's. I am hoping the AV's will limit the flare, and perhaps I can avoid being sick all summer again.
 

Tally

Senior Member
Messages
367
I didn't necessarily mean that we get a flu or cold but that increased microbe activity might make our ME/CFS flare up. My sore throats look more auto-immune than anything. I've been getting them in combo with severe fatigue even before I came down with ME/CFS every single year.

I'm sorry I can't be of more help, I just wanted to make a point that there are many changes throughout the year, and all those changes affect our bodies, from our immune system to our gut. I've been trying to figure it out for 20 years now.
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
I'm actually quite confused as to what parts make me look like a fraud out of them. I personally dont really care whether anyone listens. It isnt a secret. Ari explains his program in his pre-registration video... and yes the things he explains to do are way more than anyone could even imagine, never mind actually go and do..people really need to find their info and get better- i spent half a year researching and im
Pretty grateful i have 95-99% if not all of the info i need to recover.

I'll be posting my story on YouTube when I'm better and helping others as im far too passionate about health, CFS recovery and i want others to see the light, and actually walk the walk! (I'm only at 10-20% of recovery so its early days for me) if you have any questions at all feel free to ask and i'll answer them (because its nice for someone to recognise the positives- that doesnt always happen when sharing ideas)

Hi Michael,

Are you still following Ari Whitten's program? Just wondering how it's going and if it's worth buying.