• 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, 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.

Ok science geeks — what does this tell you about my physiology??

Hoosierfans

Hoosierfans

Senior Member
Messages
400
About a year and a half ago, I went on a strict keto diet and I felt AMAZING for two weeks. I went from bedridden to going to church, my kids activities, cleaning my house...all within a matter of days of starting it.

But then it all faded and I was back to baseline...even though I was sticking with the diet.

Ive had this experience in the past...anything that makes my body feel better (and it’s few and far between), will make me feel great for a day or two and then stop working. But keto lasted the longest.

Any idea why this is? (I should note that I have yet to address any viruses that may be at the root of my illness)
 
Bansaw

Bansaw

Senior Member
Messages
521
The body habituates. Acetyl-L-Carinitine worked well for me, then stopped.
I was on Keto for 7 mnths, just come off it. With Keto you have to really supplement wisely, otherwise your body will suffer from lack of, for example, magnesium, potassium etc. It may have been that gradually on Keto you were missing some important vitamins/minerals.
 
Hoosierfans

Hoosierfans

Senior Member
Messages
400
Bansaw said:
The body habituates. Acetyl-L-Carinitine worked well for me, then stopped.
I was on Keto for 7 mnths, just come off it. With Keto you have to really supplement wisely, otherwise your body will suffer from lack of, for example, magnesium, potassium etc. It may have been that gradually on Keto you were missing some important vitamins/minerals.
Click to expand...
Hmmm, interesting. Yeah I was supplementing wisely b/c I was under the guidance of a super smart nutritionist / Ben Lynch trained / Bredesen trained doc. We did start a yeast killing protocol and that’s when it started to go downhill, but even after we stopped that I couldn’t get back the gains I had when I started keto.

So how do we heal if the body keeps habituating?
 
helen1

helen1

Senior Member
Messages
1,033
Location
Canada
It may not be habituation, it may be that you’re adding stress to your adrenals with ketosis. There is debate about this but from my readings so far, I think if you have weak adrenals, keto will make it worse. It’s also the experience of many on an Adrenal group I belong to.
 
Hip

Hip

Senior Member
Messages
17,852
Hoosierfans said:
But then it all faded and I was back to baseline...even though I was sticking with the diet.

Ive had this experience in the past...anything that makes my body feel better (and it’s few and far between), will make me feel great for a day or two and then stop working. But keto lasted the longest.
Click to expand...

I've joked that ME/CFS is an intelligent disease: it knows when you are trying to tackle it, and so each time you make gains, the disease just intelligently adapts to maintain the upper hand!

I've had a few instances when I thought I was almost cured for few weeks after starting a new medication, only to find the positive effects of the med vanished after a short while, even though I continued to take the med.


However, there are also times when a supplement or medication which helps continues to do so long term. So don't give up looking for solutions.
 
Hipsman

Hipsman

Senior Member
Messages
542
Location
Ukraine
I had similar experiences of something working for on first day and then stopping completely after a few days. For me, the solution was to apply the treatment more directly on to the problem, but the way to do that is very specific to each problem. One immunostimulanting/immunomodulating drug was effective in that it improved my response to a treatment that I linked above, but it's very hard to know what exactly it did that helped.
 
valentinelynx

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Yes, ME/CFS appears to have it's own homeostasis. There are countless stories of people feeling better with any number of treatment approaches only to relapse after more or less time. For me, I had a virtual 100% recovery for one week after a ketamine infusion by Jay Goldstein, MD around 1996. Then the symptoms came back gradually. I also had a remission about a year later to about 80% function that lasted for about 12 years. I was trying many things before the remission. I wasn't able to reproduce their benefit after the relapse. The temporary nature of recovery has led some to believe that ME/CFS is a protective state. This is the idea behind the Dauer concept.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,354
valentinelynx said:
The temporary nature of recovery has led some to believe that ME/CFS is a protective state. This is the idea behind the Dauer concept.
Click to expand...

I found this very detailed review article on Placebo effects...to be...interesting..and likely involved in our experiencing of a treatment helping, or not helping, or helping for a while then not.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6013051/

Summary of key points:...
Key points

  • Placebo effects are effects of the context surrounding medical treatment. They can have meaningfully large impacts on clinical, physiological and brain outcomes.
  • Effects of placebo treatments are consistent across studies from different laboratories. These effects include reduced activity in brain areas associated with pain and negative emotion, and increased activity in the lateral and medial prefrontal cortex, ventral striatum and brainstem.
  • Placebo effects in pain, Parkinson disease, depression and emotion are enabled by engagement of common prefrontal–subcortical motivational systems, but the similarity across domains in the way these systems are engaged has not been directly tested.
  • Meaningfully large placebo effects are likely to require a mixture of both conceptual belief in the placebo and prior experiences of treatment benefit, which engage brain learning processes.
  • In some cases, placebo effects are self-reinforcing, suggesting that they change symptoms in a way that precludes extinction. The mechanisms that drive these effects remain to be uncovered, but doing so could have profound translational implications.
 
Rufous McKinney

Rufous McKinney

Senior Member
Messages
13,354
R

renski

Senior Member
Messages
338
Location
Honolulu
Hoosierfans said:
Hmmm, interesting. Yeah I was supplementing wisely b/c I was under the guidance of a super smart nutritionist / Ben Lynch trained / Bredesen trained doc. We did start a yeast killing protocol and that’s when it started to go downhill, but even after we stopped that I couldn’t get back the gains I had when I started keto.

So how do we heal if the body keeps habituating?
Click to expand...

Dunno why doctors continue to think killing yeast is the answer :/

www.youtube.com / watch?v=fjbdGc1p6LM
https://www.ei-resource.org/article...gal-infections-why-most-treatments-dont-work/
 
Last edited:
WantedAlive

WantedAlive

Senior Member
Messages
158
Hoosierfans said:
About a year and a half ago, I went on a strict keto diet and I felt AMAZING for two weeks. I went from bedridden to going to church, my kids activities, cleaning my house...all within a matter of days of starting it.

But then it all faded and I was back to baseline...even though I was sticking with the diet.
Click to expand...

@Hoosierfans Your experience with Keto is similar to mine. I experienced a transformative improvement from moderate ME to 'cured' (at least what it felt like) over the 2-3 day transition into ketosis. My whole posture changed, I could hold myself upright with ease, I could march around the supermarket aisles at pace, compared to only two days before stooped and dragging my unwilling carcass beyond 100m as rigor-mortis was setting in.

I still had boundless energy as I exited the supermarket, I hadn't experienced that since getting ill years before. So elated by this, I proceeded to test myself and walked at pace across the carpark. For 200m it was shear joy, but then quite swiftly it all began to unravel, I felt deathly ill, the energy dissipated and I stumbled to the nearest bench seat. I was terrified I was about to suffer a heart attack. I had to slowly walk back to the vehicle, got home, and collapsed on the couch. My legs were in burning pain. What the heck just happened?

Since that day I had regressed to worse than before Keto, and continued to deteriorate since, on any diet. Like you I have since tried to understand what failed that day. I described this to Doctors but they don't really believe me or relate to the magnitude and suddenness of what happened. I would love to know, as I guess this is at the core of ME. It's easy to hypothesize how Keto might be helping ME and there are many theories, but why Keto would suddenly fail under moderate exertion like I experienced and never recover is one massive mystery. I can't help answer your question sorry, but know you're not alone with your experience.
 
blacksunwolves

blacksunwolves

Messages
20
Location
Staffordshire, UK
WantedAlive said:
@HoosierfansMy whole posture changed, I could hold myself upright with ease
Click to expand...
@WantedAlive I have recently become aware of a link with carbohydrates and poor posture/no core inner strength. I can now sit and have a meal and feel the centre of my body pulling inward as I'm eating the carbohydrates, I am discovering a link with posture and carb intolerance and currently wondering what came first, the chicken or the egg?
A friend of mine recently found out her work colleagues daughter made an almost full recovery from chiropractic treatments although they have not worked for me, I do have a visible spine issue in the centre of my back which correlates with the tightness in the stomach area, it feels like I'm onto something and appreciate you all sharing your experience with posture too, thank you.
 
blacksunwolves

blacksunwolves

Messages
20
Location
Staffordshire, UK
valentinelynx said:
The temporary nature of recovery has led some to believe that ME/CFS is a protective state. This is the idea behind the Dauer concept.
Click to expand...
@valentinelynx I find this really interesting in terms of posture and perhaps some kind of subconscious response in the body/mind to our perceived stresses and traumas and the fight/flight mode button being constantly switched on while we are braced in a kind of foetal position, ready for protection. Hadn't come across this before, thank you.
 
You must log in or register to reply here.