• 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.

Damn it I had improved a ton. Now I’m back, and everything makes me worse.

Messages
35
Several months ago, I ate out (I react badly to the preservatives and stuff in most food joints) and drank things I shouldn’t have (sugary alcoholic drinks) on one of my friends’ birthday. That night, I experienced an immensely painful sensation in my left abdominal area, which I was able to get through with meditation - it lasted about 10 seconds or so and it felt like something had squeezed and popped.


I experienced the following new symptoms for weeks: yawning all day (air hunger), acid reflux, hoarse voice (likely reflux affecting vocal cords), muscle twitching, bloating, low energy, poor concentration, weakness, irritability, lots of burping, palpitations, and difficulty breathing - partly because I could not belly-breathe like I used to, due to the bloating


And I tried throwing everything at it from my toolkit: antimicrobial herbs, liver detoxifying herbs, clay variants, diatomaceous earth, apple cider vinegar, acupuncture. (note: through extensive testing I know I don’t do well on anything that isn’t whole-food based)

These are medicines I've grown fond of over the years that have always helped maintain a healthy body. Depending on what I was dealing with, the right tool for the job would make my body right. At worse, they would leave me feeling the same, and I'd have to try another tool.

What was weird is that these things now not only didn't help, they actively made me worse.

Here’s where I am now: Colostrum (which didn't help me in past years...weird) improves my energy, mood, and cognition beyond anything I’ve ever experienced. I also don't burp or get heartburn while on it.

So my current plan is to keep on taking it for weeks, months, and hope that it accelerates a natural healing process that fixes my remaining issues: bloating, inability to belly-breathe (because bloating), and intolerance to my usual natural medicines.

Things get even more complicated: for the last couple of days I tried upping the dose of colostrum (to 1 tbsp 3x/day) to see if I could speed up the process. It backfired powerfully: I felt a profound loss in energy, and experienced a wave of depression. To figure out what happened, I reduced the dose (to 1 tsp twice a day), and I’m feeling great again. I also experienced a seriously runny nose, which culminated with my seasonal allergies disappearing. But I also have a new issue: burning type of nerve pain in one spot on my right palm when I extend it completely. (a transient neuropathy issue?)

So this has been a bit of a rollercoaster with ups and downs, but with a potential for a redemptive narrative that has allowed me to discover a new ally for my medicine cabinet.

My hope is that after several months of this protocol (clean diet, colostrum, acupuncture), I will see a gradual restoration of my gut lining & digestive capacity, which will fix my bloating issues, which will fix my breathing issues. And I will once again be able to benefit from my natural medicine cabinet.

Does anybody have any advice to offer, directions I should consider exploring, or words of reassurance?

BTW this incident has made me seriously reconsider eating out and drinking. It’s made my mentality a little more careful because sometimes one night of fun isn’t worth it and can create consequences that in the long-term are negative returns on investment.

Anybody else completely stop eating & drinking out? What are some social scripts you use to get around it?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
and drank things I shouldn’t have (sugary alcoholic drinks)

Anybody else completely stop eating & drinking out? What are some social scripts you use to get around it?

Alcohol can be like taking poison to many who have got ME/CFS. They even thought about putting alcohol intollerence into the ME/CFS diagnostic criteria as negative affects from this are so common in us. I do think most foods wouldnt be having one still at a lower level of things months later (eating bad usually is a temporary bad impact thing after it) so I think it may of been that alcohol which has done that longer term damage to you.

You may not need to stop eating out, just possibly maybe avoiding the alcohol could be enough. You could just tell your friends your body is not handling that and that should be fairly easy to avoid having if out.

You should just be able to say no to alcohol and just "prefer" to drink something else instead. "I'd just prefer just a coke please" (or whatever you usually drink).. you shouldnt even have to make a deal about not having alcohol. (if someone fills up a glass with alcohol for you, just leave it there so they wont do it again and go get another drink).
 

Wishful

Senior Member
Messages
5,655
Location
Alberta
Anybody else completely stop eating & drinking out? What are some social scripts you use to get around it?

No social scripts needed, because I just gave up on socializing. After getting PEM every time I socialized, I learned to not do that. Also, living in the middle of nowhere makes it easy. I expect it would be more difficult for urban dwellers.

I haven't even gotten take-out food in many years, because it's just too easy to get a bad reaction from something I don't know all the ingredients of. *sigh* I do miss restaurant food. Just not enough to risk bad reactions.