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 [7]).  CAPi [3] since August 06, Cpni [8], Mpn, B. burgdorferi, systemic candidiasis, EBVi [2], CMV & other herpes family viral infectionsi [9], elevated heavy metals, gluten+casein sensitivity. 

___________________________________________________________

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [7]).  CAPi [3] since August 06, Cpni [8], Mpn, B. burgdorferi, systemic candidiasis, EBVi [2], CMV & other herpes family viral infectionsi [9], elevated heavy metals, gluten+casein sensitivity. 

Marysia, My cholesteroli [1] 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 [10]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [11], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

___________________________________________________________

Louise  CFSi [10],CPNi [8]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [4] +fattyEndotoxins HS PRN, Wheldon CAPi [3] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

 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 [3] for Cpni [8] 11/04. Dx: 25yrs CFSi [10] & FMSi [12]. Protocol: 200mg Doxyi [11], 250mg MWF Azith, Tinii [13] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

___________________________________________________________

CAPi [3] for Cpni [8] 11/04. Dx: 25yrs CFSi [10] & FMSi [12]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [13] 1000mg/day pulses; Vit D2000 units, T4 & T3

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 [8], HHV6, and EBVi [2] positive 03/08; two years slow up and down improvement on variations of CAPi [3]. Currently halted in treatment after an apparent severe porphyriai [4] attack with lasting damage seven months ago. Trying to understand porphyria in order to resume treatment more safely. Taking most supplementsi [5] recommended on this site [6] and finding them helpful.

 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 [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [8], myco, EBVi [2], CMV. NACi [14] 4000mg, doxyi [11] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [15], tinii [13]<

___________________________________________________________

Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [8], myco, EBVi [2], CMV. Capi [3] began in 6/07. NACi [14] 2400mg, doxyi [11] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [15] pulses

 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 [3] for Cpni [8] 11/04. Dx: 25yrs CFSi [10] & FMSi [12]. Protocol: 200mg Doxyi [11], 250mg MWF Azith, Tinii [13] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

___________________________________________________________

CAPi [3] for Cpni [8] 11/04. Dx: 25yrs CFSi [10] & FMSi [12]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [13] 1000mg/day pulses; Vit D2000 units, T4 & T3

Marysia, what was the outcome of you attempt to use Cholestyramine for proporhia?  How are you doing working onto CAPi [3] now?

Louise, CFSi [10]. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi [14],Doxyi [11], Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini [16] Die-OffExperiences.

___________________________________________________________

Louise  CFSi [10],CPNi [8]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [4] +fattyEndotoxins HS PRN, Wheldon CAPi [3] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM