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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.
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Blog entries by CedarHome
I'm at the point where I'd rather fast. The nausea from the sick sweet powder and oil...
diarrhea from the oil... sugar coma headache.
Originally I was aiming for 30 days. I've already mentally adjusted to 3 weeks but even that seems impossible today.
One of my friends told me it's like...
1. Don't buy the full amount of powder that you *think* you will need all at once. I followed the directions on the Integrative Therapeutics website and ordered a whopping TEN pouches. Non-returnable of course. I was committed! I was going to STICK. It. OUT!. Turns out I'm downing way less than...
Downing 1 tsp oil (alternating MCT & olive oil) per scoop of powder.
Much better blood sugar regulation.
We (person in my household who knows how to convert grams to calories and whatnot) sat down & figured out I can go up to 2 tsp oil/scoop to get the fat to something like 40% of total...
Can't tolerate the high sugar content. I tried 3 scoops at once last night- big mistake even though I drank slowly over an hour as recommended.
This morning trying 1 scoop slowly. Not quite as vomitous but still raging sugar headache. This stuff is supposed to be nutritious?!
Here I have...
So quick recap:
1. College year in beautiful country with rudimentary infrastructure, ate around, caught every gastro bug there was.
We took antibiotics like they were aspirin. Kids! :woot:
2. 25 years later! Eating very little processed food, mostly grains beans & veg, kraut etc
3. Total...
SIBO round 1: herbal protocol for 1 month.
Bacterial load doubled, laughing all the way.
SIBO round 2 Rifaximin / vancomycin
Highly effective - went from a methane level of 150 to something like 17 (ppm or whatever the units are)
SIBO round 3- repeat antibiotics- will see results after...
Beginning to peek out from under the extreme fog and sleepiness of last 2 months.
Started artemisin protocol early December. It was merely DISGUSTING for the first couple weeks and then... I slept for 2 weeks straight. Wake up, eat a bit, back to bed. Brain fog, inflammation, everything sore...
After roughly 2 1/2 months of increasing work hours and stamina and endurance...
Yes people on PR know how this story ends...
Spent the last week sleeping all day and night.
Surprise!
I am not complaining - I don't feel badly actually- just zero energy-- it feels like some kind of healing is...
The flare has calmed down and I have a LOT more energy, which is
:balloons::balloons::balloons:very exciting :balloons::balloons::balloons:
I have even had a couple times when I could not stop dancing in the kitchen
(yes this is after 9 months of being nearly couch/ house bound)...
Was doing so well and then - - slam into Wall of Flare
This time it feels very clearly inflammatory- full body
Day 3 of full on sleeping/ crash
I spend any energy reading up on low histamine diets
Although it is quite beyond me how to combine low-histamine eating with SIBO preventative...
As per Dr. Kaufman
"active chronic Lyme" + MCAS + SIBO... Bartonella is possible also.
A mere 9 months after big crash/ acute episode that I am still trying to recover from
I am so grateful to Phoenix Rising and that I found this site early on.
If I were waiting for the local medical...
Protocol: B12 injection 3x / week (10 mg I think) and methylfolate.
Started out 2 mg, then went to 3, now at 4.
Week 1 was great! Well, that's what I remember, but my actual notes say
Dose 1:
Increased light & sound sensitivity, herx like reaction, malaise
Lymph nodes started talking 2...
LDN, LDN, how I love thee, LDN.
Started 1.5 mg 3 days ago. Results so far:
--Better sleep! It really cut down the "wake every 90 minutes" business which was getting OLD.
--Mild illness. Fatigue, need to rest, lack of concentration. This after a period of (relatively) high functionality...
I kept thinking- is this insane? (yes)
But decided that if I only had 6 weeks/months etc to live I would STILL want to see the eclipse if it was at all possible. I've been slowly getting better so decided to risk it.
Of course we didn't make lodging reservations 3 years ago. Backcountry...
23 & Me results courtesy Genetic Genie:
MTHFR C677T +/+ (I understand this is the party bus)
MTR A2756 +/+
MAO-A R297R +/+ (I know, I only have the good ones!)
VDR Taq +/+
VDR Bsm +/+
CBS C699T +/- (not sure if this is meaningful)
So, while waiting for Nutrevel results, I am combing through...
So, last week was my husband's birthday. We haven't been out to eat since I got sick in February.
Against my better judgment I made reservations at his favorite (local family owned Italian) restaurant.
Early at least.... 5:30 pm...- that should help, right?
We were almost the only people in...
Also, CD 57 came in at 71/uL which naturopath thought was low and could be Lyme indicative.
So, since Phoenix Rising is now my community, and since I spend hours here every day learning- wanted to share my update.
4+ months into current "flare" and I'm much better than I was, knock on nearest wood
Mostly housebound
Able to work 2-3 hrs per day from home, several days/week
Praying...