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 Post subject: EDS/CFS
PostPosted: Wed Oct 01, 2014 11:30 
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Last edited by niiskuneiti on Fri Jul 03, 2015 11:18, edited 2 times in total.

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 Post subject: Re: EDS/CFS/MCS ollako kaikki tosiaan...
PostPosted: Thu Oct 02, 2014 12:47 
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Location: Amsterdam, Hollanti
Valitettavasti tuo on aika yleinen "kokoelma" ja useinhan siihen tulee vielä lisääkin, esim. hormonaalisia puutoksia (toivottavasti ne on sinulla suljettu pois?). Ikäviä sairauksiahan nuo ovat kaikki. EDS nyt varsinkin, kun sitä ei voi parantaa, CFS:n ja MCS:n kohdalla paranemisesta on sentään pieni mahdollisuus ja ainakin parempaan kuntoon voi tulla.

Saitko Pololta LDN-reseptin, kehotuksen juoda suolavettä tai muuta hoitoa? Mahdollisten hoitojen tehohan riippuu paljon siitä, että mikä on pääsyy uupumukseen jne. Jos se on EDS, sille ei voi tehdä niin paljoa. Jos CFS,
sille taas voi. MCS:äänkin on hoitoja, muitakin siis kuin kemikaalien välttely, esim. nystatiini, nimodipiini, magnesium ja B12-vitamiini.

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: EDS/CFS
PostPosted: Thu Oct 02, 2014 08:42 
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Last edited by niiskuneiti on Fri Jul 03, 2015 11:16, edited 1 time in total.

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 Post subject: Re: EDS/CFS/MCS ollako kaikki tosiaan...
PostPosted: Thu Oct 02, 2014 09:28 
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Location: Amsterdam, Hollanti
Auttoiko kilpirauhaslääkitys? Jos ei auttanut, voi olla että annos oli liian pieni tai lääkitys muuten väärä, mutta jos jonkun lääkärin mielestä sinulla on vajaatoiminta, hän oli varmaan oikeassa.

Saattaisit hyötyä oikeasta progesteronista (siis aineesta jonka nimi on "progesteroni", se on ihan sarjaa kuin e-pillereiden jne progesteronit. Progesteroni tekee paljon muutakin kuin vaikuttaa kohtuun. Sääli, että sitä on niin vaikea saada, "vaihtoehtolääkäritkin" sitä Suomessa hyvin harvoin jos koskaan määräävät.

EDS voi tosiaan aiheuttaa pahaa lihasheikkoutta (ja muita lihasoireita kuten särkyjä) ja myös uupumusta. Sitä en osaa sanoa, miten EDS-uupumus eroaa CFS-uupumuksesta, kun minulla ei ole EDS:ää, mutta tällä foorumilla on lukuisia EDS-ihmisiä, ehkä joku osaa kertoa. Sehän vaikuttaa käytännössä kaikkiin kudoksiin. Joidenkin mukaan EDS:ään tehoaisi metyylifolaatti (reseptivapaa aktiivinen muoto foolihaposta) ja moni tältä foorumilta onkin saanut siitä apua, ei tosin vain EDS-ihmisiä).

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: EDS/CFS/MCS ollako kaikki tosiaan...
PostPosted: Fri Oct 03, 2014 02:17 
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Last edited by niiskuneiti on Fri Jul 03, 2015 11:17, edited 1 time in total.

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 Post subject: Re: EDS/CFS/MCS ollako kaikki tosiaan...
PostPosted: Fri Oct 03, 2014 07:07 
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Location: Amsterdam, Hollanti
Mikä B12-arvo oli 80? TC-B12? Normaalissa B12-kokeessa tuo olisi jo todella pahasti alle viiterajojen, niin tuskin se. B12:sta on tosi monella puutetta ja toisaalta liikaa sitä ei voi mitenkään saada.

Tyroksiinin tehon hiipuminen voi johtua siitäkin, että kilpirauhasen vajaatoiminta usein ajan myötä pahenee.

Suosittelen tutustumaan Suomen EDS-yhdistyksen toimintaan! Itsekin olen aika paljon perehtynyt EDS:ään, minulla on useita sitä sairastavia ystäviä ja täällä on paljon lisää (olen jopa kirjoittanut siitä romaanin), mutta en tosiaan sairasta sitä itse ja heillä on niin käytännön kuin muutakin tietoa aiheesta.

CFS:llä voi harvoissa tapauksissa onnistua saamaan sairausetuuksia, yleensä kyllä ei onnistu. Monikemikaaliherkkyyttä ei Suomessa eikä oikein maailmallakaan taideta tunnistaa sairaudeksi ollenkaan, vaikka yksittäiset lääkärit hyvin tietävätkin, että se on oikea sairaus. Molemmissa on osittain takana taloudelliset intressit: CFS on invalidisoiva ja potilaita on hyvin paljon, joten kannattaa leimata se höpösairaudeksi. MCS taas pelottaa kemianteollisuutta jne. On parempi antaa ihmisten uskoa käsitykseen, että kaikki markkinoille hyväksytyt kemikaalit ovat turvallisia ja niistä vouhkaavat ovat vain luulosairaita viherpiiperoita.

Olet siinä mielessä "onnekas", että vaikka EDS onkin inhottava ja huonosti tunnettu sairaus, sitä ei kuitenkaan kukaan kiistä tai pidä luulosairautena. Diagnoosin saaminen on se vaikein osuus ja siinä olet jo onnistunut. Sillä saa tarvittaessa sairasetuuksia sun muita, aika moni CFS-potilas on sairaseläkkeellä EDS-diagnoosilla, vaikka todellisuudessa työkyvyttömyyden syy on CFS. Vaikka kyllä EDS itsessäänkin voi aiheuttaa työkyvyttömyyttä.

_________________
CFS 8/2000, LDN 3/2007, panhypopit 11/2011, hypoglykemia, gastropareesi. Pirasetaami, nimodipiini, Medrol, T3/T4, EST/PROG, staph vax, koukkumadot, Q10, ALA, bromelaiini, I3C, GTF, D/E/K2, Mg, Zn, M-B12, MTHF... Blogi


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 Post subject: Re: EDS/CFS/MCS ollako kaikki tosiaan...
PostPosted: Fri Oct 03, 2014 10:04 
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 Post subject: Re: EDS/CFS
PostPosted: Mon Sep 10, 2018 10:26 
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