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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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CedarHome

CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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)...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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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...
CedarHome
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Also, CD 57 came in at 71/uL which naturopath thought was low and could be Lyme indicative.
CedarHome
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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...

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CedarHome
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