Does anyone have a sense of how many cpnhelp members use Cholestyramine/Questran?
If anyone has had a difficult time with it, i.e. a herx reaction, do you by chance have low cholesteroli?
Trying to solve the mystery of why some "herx" (or just plain have a bad reaction?) on it and others don't.
Thanks!
Marysia
CDC Lyme Western Blot positive 02/06, Cpn, HHV6, and EBVi positive 03/08; two years slow up and down improvement on variations of CAPi. Currently halted in treatment after an apparent severe porphyriai attack with lasting damage seven months ago. Trying to understand porphyria in order to resume treatment more safely. Taking most supplementsi recommended on cpnhelp.org and finding them helpful.
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My husband Steve uses it...a
My husband Steve uses it...a double dose in the middle of the night. I use activated charcoal myself, but that could change.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Marysia, My cholesteroli
Marysia, My cholesteroli numbers are excellently low!. I take Chyolestyramine at bedtime 1 - 2 packets when porphoria symptoms arise between, during or after pulsing as needed, but not continuously. I wishi I had known about the option sooner last summer it would have helped my brainfog and fatigue at a much needed time.
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
Maryisa- Look on the upper
Maryisa- Look on the upper left corner of the screen and you'll see a quick poll on your question. Let's see what we get!
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I'm so glad it helps you,
I'm so glad it helps you, Louise! I'm hopeful I'll benefit after a time, too. I'm up to .5 dose (in 2 parts) for today and maybe it won't knock me down as hard as before. The reaction seems to be lessening a bit. Relief from brain fog and fatigue would be so nice.
Marysia
CDC Lyme Western Blot positive 02/06, Cpni, HHV6, and EBVi positive 03/08; two years slow up and down improvement on variations of CAPi. Currently halted in treatment after an apparent severe porphyriai attack with lasting damage seven months ago. Trying to understand porphyria in order to resume treatment more safely. Taking most supplementsi recommended on this site and finding them helpful.
Today, was the second time
Today, was the second time that I tried the chole. once in november and then today. and I must say, it makes me feel YUCKY. both times it bloats me up, makes me feel like i have a brick in my intestines, it makes my intestines feel unsettled, and a burning sensation. burping too. I took it about 12:30pm today. and i still feel bad. I even took an 1 1/2 nap, which I never do..but, i did notice about 1 hour after taking it, that my anxiety was gone. maybe, if i get desperate in the future, I will try 1/2 scoop. i'm drinking extra water to try to get it out of my system.
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Bloated but less anxious,
Bloated but less anxious, what a choice! Sounds like the charcoal is better for you. Have you tried Welchol. Another prescription bile absorbant. Some here have found it useful.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Marysia, what was the
Marysia, what was the outcome of you attempt to use Cholestyramine for proporhia? How are you doing working onto CAPi now?
Louise, CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.