Here’s what I’ve learned so far .

[YippeeKi YOW !!]

Seems that he doesn't want to give us his insides anymore

Possibly a narrow escape for us, yes?

Anyway, I have enough trouble dealing with my own insides, wasn't really looking forward to having to deal with someone else's ... ....

He does seem to have vanished. Maybe he's just taking a breather ....

Are you doing OK? I know that you were hoping for useful input from @Muddy, and he may be back, still !!! All of us need a break from time to time ....

 

[Boba]

He was replying in another thread:

https://forums.phoenixrising.me/thr...ti-nmda-antibodies.47413/page-20#post-2346302

 

[Martin aka paused||M.E.]

He was replying in another thread:

https://forums.phoenixrising.me/thr...ti-nmda-antibodies.47413/page-20#post-2346302

Very helpful inside, especially because many take antihistamines for their MCAS... Without bringing latent to lytic states

 

[Martin aka paused||M.E.]

Possibly a narrow escape for us, yes?

Anyway, I have enough trouble dealing with my own insides, wasn't really looking forward to having to deal with someone else's ... ....

He does seem to have vanished. Maybe he's just taking a breather ....

Are you doing OK? I know that you were hoping for useful input from @Muddy, and he may be back, still !!! All of us need a break from time to time ....

Honestly, I asked because of amusement
I'm doing ok. Bedridden, tube fed, can't speak, don't know what to treat first. ME/CFS as it's best

 

[Boba]

Very helpful inside, especially because many take antihistamines for their MCAS... Without bringing latent to lytic states

I dunno man. Didn’t read his text.

 

[lint7]

When my liver and gallbladder started working again I started getting sick with cold and flu symptoms which I hadn’t had in like a decade and at the sand time I could feel love again .

How did you get your liver and gallbladder working again?

I agree that many of us have problems with the liver, gallbladder and pancreas (and bile ducts).

 

[Muddy]

Ok , so we’ve got latent viral infection in liver , gallbladder , pancreas , brain.

When histamine is low you’ll feel irritable and angry . My skin starts turning yellowish when this happens .

low histamine = low libodo

raise histamine and you’ll start becoming fearful , anxious , nervous . Viral load will pick up in nervous system and cause sensory issues . Nervous system becomes overdriven and suppressive inflammation will release on organs. This helps body detoxify .

high histamine = high libido

sex and masturbation cause a large change in hormone levels which results in a change in immune function . you’ll see a change in symptoms following sexual activity .

im tired I’ll add some more stuff tomorrow

 

[Muddy]

How did you get your liver and gallbladder working again?

I agree that many of us have problems with the liver, gallbladder and pancreas (and bile ducts).

Best way to describe it was it felt like my body and brain forgot how to handle stress and I had to manually relearn it . Just doing things the old fashioned way is what worked .

everytime I would start exercising it would increase inflammation and I would crash and my hormones would get all out of wack it was take me a while to get back to my baseline level of illness .

Getting a job at a pizza restaurant and working in the kictchen and delivering pizzas was literally the biggest thing that helped me . In the kitchen it gets hot as hell , the heat is cleansing . that’s what I mean by exercise , I don’t mean hitting the gym or running at the park . Light , low stress job to get the body moving and the mind focused , amazing for immune function . Exercise balances everything out in the body.

The initial year or 2 is very challenging , bouncing back from the breakdowns of fatigue and a serious worsening of my neurological issues was tough . There came a point where I was getting worse and worse with symptoms getting extremely scary (having the fear of ALS in your mind is something you don’t wish on anyone ) , but than things started getting better and the crashes shorter in duration and symptoms started disappearing 1 by 1 .

After a while there came a point where the crashes following exercise stopped completely and I remember jogging thru the parking lot at work and than I started coughing up all this brown mucus and I felt calm and warm and energetic for the first time in like a 6 years . My nervous system calmed , my hormones balanced , and I felt amazing. No anxiety or depression whatsoever . I had forgotten how good it felt to feel good again . I felt love and warmth running thru my veins again . All of my food and environmental allergies stopped completely .

but than I got sick for the first time in a long time and all my neurological issues went acute . I started getting very weak in my arms …

I’ll write out a detailed write up of everything I know tomorrow . Hope this helps some people

 

[lint7]

When histamine is low you’ll feel irritable and angry . My skin starts turning yellowish when this happens .

Interesting. I had fairly obvious yellow skin for the first six months or so of my illness (with no sign of elevated bilirubin). I now have a general yellow pigment to my skin seven years later.

I also had bouts of extreme anxiety and panic attacks early on which seems to be consistent with what you are describing.

Have you suffered from fat loss in your face (i.e., sunken cheeks) and extremities?

 

[Reading_Steiner]

Can relate to what you said about going out and doing stuff, very similar to my experience in 2017 through to 2019. If all ME was caused by structural brain problem ( undiagnosed CCI ), these activities would make us worse. You got anything about diet ? I'm looking into that at the moment.

 

[xploit316]

Best way to describe it was it felt like my body and brain forgot how to handle stress and I had to manually relearn it . Just doing things the old fashioned way is what worked .

everytime I would start exercising it would increase inflammation and I would crash and my hormones would get all out of wack it was take me a while to get back to my baseline level of illness .

Getting a job at a pizza restaurant and working in the kictchen and delivering pizzas was literally the biggest thing that helped me . In the kitchen it gets hot as hell , the heat is cleansing . that’s what I mean by exercise , I don’t mean hitting the gym or running at the park . Light , low stress job to get the body moving and the mind focused , amazing for immune function . Exercise balances everything out in the body.

The initial year or 2 is very challenging , bouncing back from the breakdowns of fatigue and a serious worsening of my neurological issues was tough . There came a point where I was getting worse and worse with symptoms getting extremely scary (having the fear of ALS in your mind is something you don’t wish on anyone ) , but than things started getting better and the crashes shorter in duration and symptoms started disappearing 1 by 1 .

After a while there came a point where the crashes following exercise stopped completely and I remember jogging thru the parking lot at work and than I started coughing up all this brown mucus and I felt calm and warm and energetic for the first time in like a 6 years . My nervous system calmed , my hormones balanced , and I felt amazing. No anxiety or depression whatsoever . I had forgotten how good it felt to feel good again . I felt love and warmth running thru my veins again . All of my food and environmental allergies stopped completely .

but than I got sick for the first time in a long time and all my neurological issues went acute . I started getting very weak in my arms …

I’ll write out a detailed write up of everything I know tomorrow . Hope this helps some people

Any updates @Muddy since your last post?

 

[Muddy]

I was doing great, not in complete remission but quality of life was good and I’m holding down full time job and have a girlfriend and stuff.

recently I started mixing oatmeal and Greek yogurt together and eating them, huge mistake.

My body has become extremely acidic and my joints are all creeking and I’m getting motion sickness from sensory stimuli etc

don’t eat any fermented foods or take any yogurt etc.

Control Psychological stress, hormone fluctuations, and dial in your diet and stay physically active with light exercise and everything will balance itself out .

 

[YippeeKi YOW !!]

Control Psychological stress, hormone fluctuations, and dial in your diet and stay physically active with light exercise and everything will balance itself out .

That's generally not the case for an awful lot of us (see GET and its many failings), but the important thing is that it works for you !!!

 

[xploit316]

recently I started mixing oatmeal and Greek yogurt together and eating them, huge mistake.

My body has become extremely acidic and my joints are all creeking and I’m getting motion sickness from sensory stimuli etc

don’t eat any fermented foods or take any yogurt etc.

Control Psychological stress, hormone fluctuations, and dial in your diet and stay physically active with light exercise and everything will balance itself out .

Thanks @Muddy. What is your current diet and exercise regimen like? Still high carb/moderate protein/low fat and goal oriented light exercises?

One trigger that I feel absolutely wrecks my hormones is masturbating. I masturbate once a month but everytime I do, i get depression, anxiety and irritability that lasts for 2-3 days. Heat, loud noises or being in crowded places does the same but to a lesser extent. Potatoes is a food trigger that I keep away from too.

I had Jaundice as a kid, and I remember my Doctor then saying that jaundice is usually caused when liver is infected and it cant detox stuff and thus can create issues later on in life which I feel Im now suffering from, even though I dont eat junk food, smoke or consume any alcohol.

 

[hapl808]

One trigger that I feel absolutely wrecks my hormones is masturbating. I masturbate once a month but everytime I do, i get depression, anxiety and irritability that lasts for 2-3 days. Heat, loud noises or being in crowded places does the same but to a lesser extent. Potatoes is a food trigger that I keep away from too.

I think this is likely just a more intense form of mental exertion triggering PEM. For people who don't have CFS, it's mostly called POIS and seems poorly understood to say the least. I don't know if it wrecks my hormones, but it causes a pretty unbearable PEM crash for several days for me - like any other form of mentally triggered PEM but just magnified.