The 3 times my ME/CFS almost completely vanished...

[Little Bluestem]

We can learn a lot from babies who are still intutuive and primitive beings.
Research into breastfeeding patterns shows that those living in the most natural communities (hunter gatherers etc in Papau New Guinea and the Amazon) hold their babies all day (in a sling) and that when held like this they feed on average for a few minutes approx every 10 - 15 minutes) Whilst in so called developed world we think its unreasonable if a baby wants nrusing every couple of hours.

But society is not set up for this way of living. Sorry to go off at a tangent.

Justy.

To go even farther off on a tangent -
When I was a child my parents took in a starved and dehydrated mare with an hours old foal. The mare did not have any udder development and we were concerned she was not producing milk. Once fed and watered, she did produce milk. The foal nursed and thrived, but the mare never developed udders. The foal was consuming the milk about as fast as she was producing it. The foal’s growth and development were quite normal, so she was producing adequate milk.

 

[anne_likes_red]

Even further off the original topic (sorry!), but justy's post reminded me of something I listened to yesterday - a recent talk at AHS13 by Kevin Boyd, a pediatric dentist from Chicago who has a special interest in evolutionary medicine.

His presentation is titled "Sleep Apnea, Attention Deficit Disorder and Small Jaws: Not Likely Things of the Past."
He explains how he believes optimal jaw development, which helps allow the proper oxygenation of the brain during sleep, really depends on extended breastfeeding...something like 3 or 4 years! (Society's not set up well for that way of living either.)
The link is not to the full presentation, just the audio - a bootleg version.

 

[justy]

Anne - thanks for the video link, will have a look later. Breastfeeding is indeed considered extremely important for proper developemnt of the jaw and teeth, as breastfeeding is an active process, whereas being fed by bottle is passive - the baby does not have to work to get the milk out of the teet, with minimal pressure it just flows.

So far off topic now!

 

[cigana]

... but unfortunately it didn't. It always came back.

Has anyone experienced a sudden improvement, albeit short, to the point that it felt like you were "normal" again? I'm asking because I recall three unique instances when my ME/CFS symptoms seemed to completely disappear... only to come back again a few days later.

1. Fall 2009, Italy/Spain: During a trip to southern Europe (Italy and Spain), I experienced another moment of sudden improvement: I was rested, slept soundly and the brain fog lifted to the point that I had a working short-term memory! The remarkable thing about this event is that it lasted almost 2 full weeks. This sudden improvement happened about 3 days into the trip, and lasted for the duration of the trip. The itinerary included both large cities (Madrid, Rome) and the countryside, different environments, different types of weather.
   
   Not only did my short-term memory improve, but my long term memory was back. I was recalling events from years past, and was doing it clearly, and at a rapid speed. I was absolutely thrilled. It gave me hopes that my memories were not lost; they were all in there, but my ME/CFS prevented me from accessing them.
   
   I felt extremely active and even creative. Truly joyous albeit fleeting moment, since all the ME/CFS symptoms came back within two days of arriving home. Imagine my disappointment after experiencing two weeks outside of the CFS nightmare... only to have everything come back again, with a vengeance.
   
   Note: I have traveled to many countries and regions, and never experienced anything quite like this. What's even more puzzling is that I went to southern Europe again last year, but did not benefit from such improvement. I once felt a bit of similar improvement in Albuquerque, NM, but not nearly as dramatic. Color me puzzled!

Why would this happen? Are these symptoms worsened by the environment? Are we exposed to toxins or bio-toxins that are stronger in certain regions? Mold toxins specific to the NorthEast? Was it the Mediterranean food? Was it the drier Southern European weather? Was it the restricted hospital diet? Was it the pristine environmental control in the hospital (clean air, etc)? :thumbdown:

For the record, in the last 15 years I have lived in 3 different apartments, and 2 different states, so I wasn't always going back to the same apartment of location.

I'm completely confused by those three fleeting moments when I felt I was free. I can't figure it out, and wish I could recreate whatever conditions that led me there.

Has anyone else had moments like these? Can you recall what made a difference? I want to be there again!

Hi Antares, thanks for posting this. Yes, you can count me as a person who has had very similar experiences to you.

I'm surprised no one has mentioned this, as it's fairly well known with MECFS and called either the Location Effect or Mold Avoidance. The theory is that something in the environment (most likely mold) is causing inflammation.

I have also miraculously felt better while being abroad, most notably Japan.

The reason why you probably don't feel better in all locations is that it is only in a small number of locations where the mold is not present.

Many people with MECFS have recovered for example by spending large times in the desert and then moving to a mold-free environment. See the posts in the biotoxin section.

I think that for some reason, the thing that is causing your MECFS (let's say a retrovirus or Lyme bacteria purely for arguments sake) is also causing you to be highly sensitive to the mold, to such an extent that actually the majority of your symptoms are due to the mold (rather than the underlying cause, which in and of itself produces less overt symptoms).

 

[gregh286]

@Antares in NYC
I have noticed this trend whereby a disruption to my circadian rhythm has hugely positive CFS effects. Over Christmas I had 2 overnight Dubai flights where i felt "tired" or jetlagged the next day but not the whole CFS feeling of doom with a few hours airline sleep both ways.
I also have the issue of waking up feeling "dead" or worse with greater amount of sleep, legs really heavy, all that stuff.
I have broke my sleep pattern into 3-4 hour blocks as a trial and huge improvement, but not really sustainable to most people to work like that,
Something is going wrong at the metabolic level at night/sleep cycle. Not mold in my case, 3 weeks in brutal mexican and dubai heat didnt fix it, no its in the human body clock.

The only sliver of medical biomarker i have after a huge number of tests to work on is very high saliva cortisol readings, lending me to the idea of a totally overworked adrenal and thyroid during sleep cycle.
I have started phosphatidylserine this week in an attempt to calm it. As a person I am not mentally stressed, but obviously my body is physically stressed to something or other.
By disrupting my circadian rhythm I am confusing my body cortisol production, with positive energy outcome.

Keep you posted,

 

[MeSci]

I've felt well once or twice in 21 years of illness. On one occasion it lasted a few hours, and was after several years.

 

[knackers323]

I've felt well once or twice in 21 years of illness. On one occasion it lasted a few hours, and was after several years.

Any idea what caused these effects?

 

[Sandman00747]

I, just like MeSci have had a few short remissions in 21 years of suffering. Last spring I had a 3 1/2 day remission back to perfect health! It was so incredibly nice to feel the old me again. Joints and head stopped hurting, energy soared, and I even started recalling memories long since forgotten. Brain fog was totally lifted.

I mean this thing completely left me or so I thought. After 3 1/2 days I awoke and it was back again. As cigana said assume it's something quite nasty like Lyme or a retrovirus. How in the world can a body feel so bad for so many years and then suddenly have the ability to completely suppress this demon for a few days? And I did not even change locations, nor did I change anything about my lifestyle during those days!

I am at a complete loss except to tell everyone I felt so good during those days of remission that I sincerely believe we can be fixed with little or no permanent damage even after 20 years. The big unknown is how do we do it? I simply have no idea how or why this miracle remission occurred! Just more questions with no answers!

 

[MeSci]

Any idea what caused these effects?

I can't remember I'm afraid.

But a quick look in my blog found the following:

"As my symptoms have improved, I have noticed that not only does PEM become much milder - at one point almost indetectable - the delay before symptoms appear increases. So when I have been at my best, the PEM was hard to detect, and seemed to be coming about a week after exertion. For most of my illness the delay has been a regular 2 days.

What could this mean? Presumably as my gut is behaving better, fewer pathogenic bacteria and/or their endotoxins are entering my bloodstream thanks to reduced gut wall permeability. Perhaps my immune system is also less active. Perhaps it was previously attacking 'good' gut flora as well as the baddies, exacerbating the gut dysbiosis?

But nothing in biology is simple...

There also seems to be variation according to the season. However well I have paced and eaten, PEM delays start shortening with the days, with symptoms getting slightly worse. As the days are lengthening again, my PEM delay seems to be up to 3 days, and it is getting milder again.

I don't think that this is due to Vitamin D levels, as I use a UVB lamp during the darker times of year.

Scientists are coming to the view that the benefits of sunshine go beyond Vitamin D.

So my prescription is: go and live in the opposite hemisphere when the days are too short in yours!

(and don't forget the pacing and leaky-gut diet)"

Unfortunately this didn't last.

I've been feeling pretty lousy since March now, and almost praying for some level of recovery.

 

[knackers323]

what the hell is this illness. is there any other illness that behaves like this? things help and then stop working etc? it doesn't follow any known and as yet understood logic.

any wonder people think we are crazy or making it up. to me it seems like the nervous system is being attacked/altered in some way. I hate this thing