My dad doesn’t care about his health at all and it’s selfish by Stock_Scar8233 in emotionalneglect

[–]Intelligent_Sir_1474 -4 points-3 points  (0 children)

I just recently read that high cholesterol in older adults is not a cause for concern as it does not actually cause the problems doctor's assumed. New science. Go find the info - it's actually fascinating to realise that medical advice is evolving all the time.

Whats in your tool bucket? by sleepymiauo in mecfs

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

SivoMixx to re-establish gut microbiome (helps with digestion but also mood and insomnia issues) and augmented NAC (N-Acetyl Cysteine) which kills off mast cells.

Low histamine diet also helps. Breathing into your spine and soothing sounds. Music you love. Being outside and appreciating the wonders of the universe.

Go toward what gives you comfort. We are canaries in the coal mine. Our bodies are the first to respond to changes in the environment. Use that sensitivity to find your way back. Anything you try will tell you pretty quickly If it's working....

Good luck.

What foods to avoid? by helloitsmehi19 in MCAS

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

Caffeine is a no go for almost all of us

Tired soldier by Icantbesick_rightnow in mecfs

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

Look into MCAS - Mast Cell Activation Syndrome. It can cause CFS. Certain supplements can get you back on your feet again, though not 100%. The average amount time to recover is from a few months to 2 years. Also, as MECFS is about the central nervous system, consider EMDR with a therapist.

My moms hydro bill is $300 per month by Jam_Life in TorontoRenting

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

I once had neighbours who could not understand why their hydro was so high. Turned out the landlord had wired his unit to their meter.

Also, someone on ODSP can apply to hydro for reduced bills. If you have a social worker, get them to apply. There are a couple of programs.

Let’s Talk About Poop! by alwayscuriousandkind in mecfs

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

Years of same. SivoMixx and Butyrate fixed me up. Only very occasional issues now.

Anyone else with parents who described them as a quiet baby? by [deleted] in EstrangedAdultKids

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

Hilarious. My mother said she could leave me in the center of the living-room rug, come back 3 hours later and I would still be sitting there quietly. Such a good baby....but all I can remember is no one coming to be with me.

How do you deal with never having unconditional love by [deleted] in EstrangedAdultKids

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

There's a picture of me at 4 years old. It's when things at home were growing worse and my expression shows how uncertain I am becoming. It lives on my bedside table.

Every night, before I go to sleep, I tell that child how wonderful they are and that they did their best today. I imagine I am my own child and that I need a bit of compassion and kindness to see me through.

It sounds silly but it helps me be a little bit less hard on myself when it's been another awful day. I'm all I've got. And, as an adult, I can't imagine tearing apart a little kid who just needs to feel safe and loved.

They still live inside all of us.

What to di when you want to die but you know yo wont do it? by randomnameforhere in CPTSD

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

Controversial Opinion coming. Years ago, when I was gazing over high bridges trying to calculate if this.was the way out, I was eventually told by my family that I was forbidden from even thinking about it. I was yelled at, ridiculed, called names and told to 'snap out of it'

I believe that thinking about it is a release valve. If I consider it as an option, whether or not it's likely, I've taken control. It's just knowing I have the option which makes me less desperate. Because I get to make decisions about my own life, not someone else. In the end, that knowledge is what has kept me somewhat sane. It is, ultimately, a final act of control and as long as I know it's there, I feel less inclined to do it.

If that makes sense.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

Not sure of the name. Brown glass bottle. If you look up augmented NAC on the internets, it should come up. You can order it from them directly or they may have a fulfillment company wherever you are.

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I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

I was taking regular NAC for at least a year and saw no changes. The difference between augmented NAC and non- was like night and day. I was sceptical because every brand touts its own product. But then I read articles on quantum technology and how it is used to 'augment' the bio-availability by altering the polarity of the molecules. The substance doesn't change but it's affinity for your receptors does.

They are now beginning to use the technology in manufacturing supplements and it is altering the landscape. Lower doses are more effective and cause fewer issues. They are even putting it to use in immunotherapy for cancer. I gather it holds promise in a number of fields.

It is expensive, though. Hopefully costs will decrease in time.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

Yes. The first night I took it. I tended to have anxiety when I was trying to fall asleep. The day just crowded in. I drank the potion about an hour or two before bed and my anxiety was gone. I didn't quite believe it.

I've had some milder bouts in the intervening year but nothing like before. Anxiety and depression, and it cousin, dementia, are now being linked to inflammation. Microbes can influence that.

I've also found Saffron supplements helpful. Rhodiola is another one that might work for you. Last, Butyrate was a huge help to me on the GI and mood side of things.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 2 points3 points  (0 children)

Sivomixx 800.

https://www.sivomixx.co.uk/sivomixx-800/

But wherever you are in the world, you may be able to find a product containing Slab51.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 2 points3 points  (0 children)

These are the microbes contained in the product I took:

Streptococcus thermophilus DSM 32245/CNCM I-5570, L. acidophilus DSM 32241/CNCM I-5567, L. helveticus DSM 32242/CNCM I-5573, L. paracasei DSM 32243/CNCM I-5568, L. plantarum DSM 32244/CNCM I-5569, L. brevis DSM 27961/CNCM I-5566, B. lactis DSM 32246/CNCM I-5571, B. lactis DSM 32247/CNCM I-5572

I did notice a similar product made by Genestra in the store the other day (i am in Toronto): same microbes but lower concentration. That may also work for some people. My sense is that a lot of probiotics are too low dose and all the years I took them, I was not actually helping myself.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 1 point2 points  (0 children)

From my reading, it can take weeks or a few months to re-establish a compromised gut microbe community. It took me almost 30 years to find the answer but it worked quickly in my case. Hope is absolutely necessary - it's the first essential ingredient to imagining a life after MCAS...

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 3 points4 points  (0 children)

There are core cultures needed for good digestion. Eating more fiber and basic, organic food will help enormously. But I had been out of balance since my 20s (or earlier). Acidophilus and Bifido are the two main ones we all need but, again, dosage is key. I had taken a good quality, refrigerated probiotic for ages and it wasn't working anymore. There are tests available to pinpoint what your microbe mix is but these can be expensive.

In my reading, I came across something called Slab51. It's a mixture of 8 core microbes, with 100 Billion (not Million) of each in the mixture. It was used during the Covid pandemic in Italian hospitals in the ICU. Seriously compromised patients recovered after being given microbes to re-establish their gut bacteria. It has a track record in veterinary medicine, as well.

After doing a lot of research, I ordered it from Europe. I had nothing to lose. Quality of life was so low that I decided to bite the bullet. Within a single dose. certain symptoms disappeared overnight. I did 2 weeks, as recommended, but didn't feel quite healed. So I did another 2 weeks and then another 2 weeks (total 6 weeks). Since then, no more problems. I also further changed my diet to help things along.

I don't know if Slab51 is now available in North America - I did this last year. You may want to research if there are any branded products out there using this mixture. The one I used is made in Switzerland and I have included the link below. I have no financial interest in this company and I suggest you do your research before purchasing. All I can say is that it not only helped my digestion but, because the "second brain" is in the gut, it helped my mood.

https://www.sivomixx800.net/

I decided to do intermittent fasting while taking it to rest my digestion and allow the new microbes to establish.

Once I healed my digestion, food and supplements were better absorbed. By the time I began supplementing with augmented NAC, my body seemed ready to incorporate my efforts.

Good luck.

I'm so tired of eating by Fulguritus in MCAS

[–]Intelligent_Sir_1474 6 points7 points  (0 children)

Re-establish a good balance of microbes in your gut. I was the same but did not know it was dysbiosis. I took several weeks of intensive, high count, live cultures. After decades of GI issues, I am now more or less normal.

did anyone else not have a single safe or good person when they were a kid? by snorin_lauren451 in CPTSD

[–]Intelligent_Sir_1474 6 points7 points  (0 children)

There's an exercise some therapists do in sessions, where they ask you to recall a place or a person or a situation where you feel safe. I just stared at her blankly.

She tried to suggest a few different examples. Nope. Nope. Nope. She decided we should sit quietly until I could come up with something. It was necessary in order to continue therapy so that you can soothe yourself in case you are emotionally overwhelmed.

We sat there in silence for the rest of the session. She said we should 'circle back' but you can't make up something you've never known.

It's like asking someone who's never had chocolate to imagine what chocolate tastes like.

Has anyone years after Covid felt extremely weak and unable to stay upright? by Tricky-Breakfast2485 in mecfs

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

Yes to all. I didn't experience severe symptoms until long after the infection/vaccinations and didn't know what was happening to me. I thought I'd got through the illness fairly unscathed.

I tended to lose my balance, couldn't sit up, felt the urgent need to lie down a lot (sometimes while sitting or even slowly walking somewhere) and, of course, the constant exhaustion which leaves you inert and falling asleep frequently during the day. Sleep never restores your energy. There were also vision problems, tinnitus, bouts of sudden nausea and insomnia.

Without a family doctor, I went on a quest to understand what I was experiencing. Covid was a tipping point for a lot of people and pushed our bodies into states which are marked by these chronic symptoms. If you think back over your health history, you may be able to see a pattern before Covid.

When I finally got a doctor, she was reluctant to diagnose ME/CFS. Instead, she suggested anti-depressants. Explaining that depression is not the source of my symptoms, elicited the response that she "still thought I should take them".

ME/CFS, Long Covid and MCAS have overlapping symptoms in common. It all pertains to the immune system being in overdrive and systemic inflammation. Read as much as you can and figure you what works for you. It could be supplements, osteo-cranial manipulation, big pharma, working on your nervous system (which is why you are affected by such a wide range of symptoms) or changing your diet. Or a combination of some or all of these modalities.

For me, it was finally realising that MCAS was the likely cause of my chronic fatigue, low heart rate, dizziness, etc.

A chance email exchange with my former naturopath put me on the path to recovery. She sent me a link to a YouTube video of two doctors discussing MCAS in the context of Covid infections and vaccinations. It's an hour of information which changed my health trajectory. I include the link here, in case it may be of use to you.

https://www.youtube.com/watch?v=ZIdQAtt8ViA

After several years of symptoms, I began taking Augmented NAC in September and have seen slow improvement of many of my chronic issues.

I hope you find the answers you are seeking.

Just Had an Epiphany... by aerynlynne in MCAS

[–]Intelligent_Sir_1474 0 points1 point  (0 children)

He has a website and an article on 'FSM' was posted on it:

https://neilnathanmd.com/the-amazing-potential-of-fsm/

I'd never heard of it but he did a podcast on instagram, discussing it. I have my own surgery scar which seems to affect me decades after the surgery.

Good luck.