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@Anon61152358473 The 1st advice I give anyone new to zebra conditions is, the sooner you start a diy approach and stop expecting docs to help, the likelier you are to heal. Not to mention, the gift of avoiding so much medical trauma.

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@Anon61152358473 And friends and loved ones will discount your disability bc they believe modern medicine can help all conditions.

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@saffronandsky So so painful. My family has traveled without me for many years. I appear in zero of their adventures, photos. They have no memories of early childhood when I traveled with them.

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@hannahlehigh @MidwesternDoc We’ve tried and it hasn’t. I’m considering careful addition of dmso to pull the topical medication deep into the pores. The cystic acne is very deep. Any advice appreciated!

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@MidwesternDoc For mecfs? I improve with mitochondrial supports but gains don’t last. So frustrated.

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@tylerblack32 This age group is not relevant to actual cervical cancer risks.

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@MattZirwas @joannamoncrieff Follow Drs W Walsh, J Greenblatt, G Ede, C Palmer, J Rucklidge, S Hazan, U Naidoo, M Bernstein. Bernstein left conventional psychiatry when his kids contracted pandas / pans. These approaches work and hard science shows correlation w psych sxs. Functional / metabolic psych

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@MattZirwas @joannamoncrieff Agree. Same standards should apply to other med types. Suppressing symptoms creates new problems. Spend a lot of time w your symptoms + pubmed + nutrients / vitamins (+ biome + mitochondria). The correlations are clear. Healing can happen when deficiencies are addressed.

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@ABrokenBattery @TheOldLostRoad I’m so confused when others can write while so sick, when dying cancer patients write a book while undergoing horrific treatments.

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@ABrokenBattery @TheOldLostRoad So variable. At my near-worst I could leave the house with caution but barely speak a coherent sentence, much less write one. Years of lost mental fx w severely impaired language and thought.

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@nico_nobody @Sunny_Rae1 @hannahspierMD @dysclinic The guidance that helped me came not from mecfs groups but as I mentioned, b12 or b1 or ferritin specific groups whose expertise is far beyond. And following that guidance I have a chance to improve. A lot.

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@nico_nobody @Sunny_Rae1 @hannahspierMD @dysclinic My testing & trmt are diy. B12 discussed, but not well informed. B1 +2 rarely discussed or tested. We may need ⬆️ doses, even w normal labs. My labs were not “low”. Most groups are notwell informed on nutrients / tests beyond avg clinical recs. If I follow that, I live in a bed.

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@nico_nobody @Sunny_Rae1 @hannahspierMD @dysclinic I don’t find good guidance in the mecfs groups. I never bought the label (only used in last few yrs). My 100% approach has been nutrients & still took > 13 yrs to turn the corner. Best guides from science based patient forums with narrow focus on a single nutrient + cofactors.

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@DafoeWhitney @christina4hope I once wrote a celebration poem honoring a day in which I had three ideas.

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@tylerblack32 Most symptoms psych but a clear physiological source, a clear viral trigger. What other label is appropriate?

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@tylerblack32 Your complaint is of semantics, you dislike the label but don’t deny existence of neuroinflammation triggered by infection? My kid had confirmed strep w new onset neuro / psych symptoms that overlap w pandas dx. No prior history of neuro / psych issues. Abx did not help.

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@labs_vanguard @MelRoBuilds NaPro helped us 19 years ago after 4 soul crushing failed IVF attempts. 2 mths of NaPro charts accurately dx’d our “unexplained” infertility and we had a natural conception just two months into their very affordable, humane, treatment.

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@JeremyWingert79 Flora and Ulysses. And the Phantom Tollbooth. Both so fun, funny and smart.