Activity of Cholestyramine, Activated Charcoal, and Super Activated Charcoal Compared

One of the discussions over the years has been the use of binding agents to soak up fat-soluble porphyrins dumped into the digestive tract by the liver, and keep them from getting re-absorbed on their way through the digestive tract. This not only lowers the immediate porphyriai reactions, but helps over time to lower the total body load of fat-stored porphyrins. Some people with Cpni don't appear to be bothered much by porphyria and find binding agents not at all helpful, others find it life saving as porphyria is a big component of their distress from Cpn. Since some tissues like the liver and bone marrow are bigger producers of hemei, it stands to reason that Cpn infectionsi in these tissues would probably create the worst secondary porphyriai. If your primary infection site is in tissues not productive of heme you will likely not have as much porphyria.

Anyway, anecdotal reports on www.cpnhelp.org< are that some people find prescription cholestyramine (Questran) to be more effective than the cheaper OTC activated charcoal, while others find the charcoal to be just the ticket. There is even a pricey but flavored choco-mint powdered form of activated charcoal! < I have likened this to taking choco-mint flavored  xerox toner, but it is a way to get a bigger dose of charcoal without capsules.

Then I read that there is a "Super charcoal" which has double to triple the absorbtive capacity of the regular stuff, meaning that less is needed for the same effect. In trying to find out more, I came upon a page< that listed a bunch of medline comparisons between cholestyramine and activated charcoal. I've copied these below and highlighted the conclusions. There may be some newer studies to add as this has not been updated in a while. It is my impression that some of these studies were done to test a specific brand of super charcoal, and so keep that in mind. The general conclusion is that the activated charcoals are as effective as cholestyramine in lowering cholesteroli, and binding with Fats, and (this should generalize to porphyrins as well). It does appear that the superactivated versions are more effective at binding some of the porphyrins than regular AC's.

 

TI: Sorbent therapy of the porphyrias. IV. Adsorption of porphyrins by sorbents in vitro.
AU: Tishler-PV; Winston-SH
SO: Methods-Find-Exp-Clin-Pharmacol. 1985 Sep; 7(9): 485-91
ISSN: 0379-0355
PY: 1985
LA: ENGLISH
CP: SPAIN
AB: The adsorption capacities (Qm's) of the ion exchange resin cholestyramine and 8 activated charcoals for uroporphyrin, protoporphyrin and coproporphyrin, porphyrins that accumulate within tissues or vasculature in certain porphyrias, have been determined. Qm's (mg porphyrin/gm dry sorbent) were derived from Langmuir isotherms, which were constructed from experiments that assessed the amount of porphyrin adsorbed after the addition of varying amounts of porphyrin in solution to a constant amount of sorbent. These experiments were carried out at pH 8.2 in 0.5% desoxycholate, to simulate conditions of the small intestine. For uroporphyrin I, the Qm for Amoco Supersorb PX-21 highly activated charcoal was greater than that for cholestyramine (mean +/- SD of 26.5 +/- 12.7 vs. 17.0 +/- 2.6; t'32 = 2.46, P less than 0.025) and highly significantly greater than those of the other charcoals. For protoporphyrin IX, cholestyramine and Amoco Supersorb PX-21 charcoal had the highest Qm's (32.4 +/- 8.6 and 30.9 +/- 9.2), but these were not significantly greater than the Qm's of 5 other charcoals. Little difference was found among sorbents in the rate of adsorption of either porphyrin. For coproporphyrin III, the Qm's of cholestyramine and Amoco Supersorb PX-21 charcoal were not significantly different (39.2 +/- 13.7 vs. 35.1 +/- 4.0) but they were greater than that of Norit USP XX (20.0). Virtually no desorption of porphyrin from either cholestyramine or Amoco Supersorb PX-21 charcoal was detected. Both cholestyramine and Amoco Supersorb PX-21 charcoal appear to be highly avid sorbents for porphyrins of varied states of carboxylation.(ABSTRACT TRUNCATED AT 250 WORDS)
MESH: Adsorption-; Human-; In-Vitro; Liver-Diseasesi-etiology; Liver-Diseases-therapy; Porphyria-complications; Porphyrins-; Support,-U.S.-Gov't,-Non-P.H.S.
MESH: *Charcoal-therapeutic-use; *Cholestyramine-therapeutic-use; *Porphyria-therapy; *Skin-Diseases-therapy
RN: 11041-12-6; 16291-96-6
NM: Cholestyramine; Charcoal
AN: 86090956
UD: 8604

TI TITLE: Sorbent therapy of the porphyrias. V. Adsorption of the porphyrin precursors delta-aminolevulinic acid and porphobilinogen by sorbents in vitro. AU AUTHOR(S): Winston-SH; Tishler-PV SO SOURCE (BIBLIOGRAPHIC CITATION): Methods-Find-Exp-Clin-Pharmacol. 1986 Apr; 8(4): 233-7 PY PUBLICATION YEAR: 1986 LA LANGUAGE OF
ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: SPAIN
AB ABSTRACT: The acute attacks of the acute hepatic porphyrias may be precipitated by the excessive intracellulari accumulation of the porphyrin precursors delta-aminolevulinic acid (ALA) or porphobilinogen (PBG). Sorbents that bind porphyrin precursors in the gastrointestinal tract may interrupt their enterohepatic circulation, thus reducing the body burden of these materials and minimizing the frequency or severity of acute attacks. We have determined the adsorption capacities (Qm's) of several activated charcoals and the ion exchange resin cholestyramine for ALA and PBG. Qm's (mg ALA or PBG adsorbed/gm dry sorbent) were determined from Langmuir isotherms, which were derived from studies of the amount of porphyrin precursor adsorbed after the addition of a constant amount of ALA or PBG to varying amounts of sorbent. These experiments were carried out pH 8.2 in 0.1% desoxycholate, to simulate conditions of the small intestine. Extremely high Qm's were obtained for all charcoals and both porphyrin precursors; those for cholestyramine were one or several orders of magnitude lower. For ALA, the Qm of Gulf Bio-Systems Super Char charcoal (110 +/- 35 [SD]) was not significantly greater than that of Med-Corp Acta-Char charcoal (95 +/- 20), but it did exceed those of all other charcoals by a statistically significant amount. For PBG, the Qm of Super Char (68 +/- 14) was marginally greater than that of Mallinckrodt USP charcoal (42 +/- 21, t8 = 2.18, p approximately equal to 0.06), but it was significantly greater than that of Acta-Char charcoal (27 +/- 12). All sorbents adsorbed ALA or PBG at comparable rates, and the complex of sorbent and porphyrin precursor appeared to be undissociable.(ABSTRACT TRUNCATED AT 250 WORDS) MESH MEDICAL SUBJECT HEADINGS: Adsorption-; Kinetics-; Support,-U.S.-Gov't,-Non-P.H.S. MESH MEDICAL SUBJECT
HEADINGS: *Aminolevulinic-Acid; *Charcoal-; *Cholestyramine-; *Levulinic-Acids; *Porphobilinogen- RN CAS REGISTRY NUMBER OR EC
NUMBER: 106-60-5; 11041-12-6; 16291-96-6; 487-90-1
NM NAME OF SUBSTANCE: Aminolevulinic-Acid; Cholestyramine; Charcoal; Porphobilinogen ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0379-0355 AN MEDLINE ACCESSION NUMBER: 86255821 UD UPDATE CODE: 8610

TI TITLE: Correlative studies of the hypocholesterolemic effect of a highly activated charcoal. AU AUTHOR(S): Tishler-PV; Winston-SH; Bell-SM AD ADDRESS OF AUTHOR: Brockton/West Roxbury Veterans Administration Medical Center, MA. SO SOURCE (BIBLIOGRAPHIC
CITATION): Methods-Find-Exp-Clin-Pharmacol. 1987 Dec; 9(12): 799-806 PY PUBLICATION YEAR: 1987 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: SPAIN AB ABSTRACT: We have carried out in vitro and animal studies to determine the cholesterol lowering efficacy of activated charcoals vs. cholestyramine. In the in vitro studies, we determined the adsorption capacity (Qm) of cholestyramine and activated charcoals for cholesterol in glacial acetic acid. Mean (+/- SD) Qm's (mg cholesterol adsorbed/gm dry sorbent) decreased in the order Super Char highly activated charcoal (277 +/- 121), Norit USP XX charcoal (33 +/- 10), Acta-Char charcoal (26 +/- 4), Mallinckrodt USP charcoal (26 +/- 10), Norit A charcoal (22 +/- 4) and cholestyramine (0). For the bile salt sodium desoxycholate in ammonia: sodium bicarbonate, pH 8.2, the Qm with cholestyramine was 4641 +/- 2669 and with Super Char was 2814 +/- 667 (p = 0.11). We then contrasted the effect of cholestyramine (1%, added to the diet) and Super Char (1% or 2%) on plasma cholesterol concentrations in rabbits made hypercholesterolemic with a diet containing casein. The percent reductions were 61 in one rabbit fed chole styramine, 61 and 67 in two rabbits fed 1% Super Char, and 90 in one rabbit fed 2% Super Char. In WHHL homozygous rabbits, reductions in plasma cholesterol from pre-treatment and post-treatment levels, respectively, averaged 52% and 38% with 2% cholestyramine (2 animals), 70% and 43% with 2% Super Char (2 animals), and 70% and 63% with 4% Super Char (3 animals). The effectiveness of cholestyramine in animals that lack functional cellular receptors for low density lipoprotein was unexpected. Super Char charcoal appears to be an effective hypocholesterolemic agent, warranting study in man. MESH MEDICAL SUBJECT HEADINGS: Animal-; Cholestyramine-therapeutic-use; Comparative-Study; Deoxycholic-Acid-pharmacology; In-Vitro; Rabbits-; Support,-U.S.-Gov't,-Non-P.H.S. MESH MEDICAL SUBJECT HEADINGS: *Anticholesteremic-Agents-therapeutic-use;
*Charcoal-therapeutic-use; *Hypercholesterolemia-drug-therapy
RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 83-44-3 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Deoxycholic-Acid ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0379-0355 AN MEDLINE ACCESSION NUMBER: 88156426 UD UPDATE CODE: 8806

TI TITLE: Superactivated charcoal versus cholestyramine for cholesterol lowering: a randomized cross-over trial. AUTHOR(S): Park-GD; Spector-R; Kitt-TM AD ADDRESS OF AUTHOR: Department of Internal Medicine, College of Medicine, University of Iowa, Iowa City. SO SOURCE (BIBLIOGRAPHIC CITATION): J-Clin-Pharmacol. 1988 May; 28(5): 416-9 ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0091-2700 PY PUBLICATION YEAR: 1988 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF PUBLICATION: UNITED-STATES AB ABSTRACT: To evaluate the relative abilities of superactivated charcoal (20 g twice daily) and cholestyramine (8 g twice daily) to lower plasma cholesterol concentrations acutely, six hypercholesterolemic patients were studied using a randomized cross-over design. After a 1-week dietary control period, each subject received 3 weeks of each treatment regimen on separate occasions. Superactivated charcoal and cholestyramine reduced total plasma cholesterol by 21.8 +/- 3.8% and 16.2 +/- 2.4%, respectively. Side effects were mild and similar for both treatments. At the dosage regimens studied, superactivated charcoal and cholestyramine have comparable ability to lower plasma cholesterol concentrations. MESH MEDICAL SUBJECT HEADINGS: Adult-; Charcoal-adverse-effects; Cholestyramine-adverse-effects; Clinical-Trials; Diet-; Female-; Human-; Male-; Middle-Age; Random-Allocation; Support,-Non-U.S.-Gov't; Support,-U.S.-Gov't,-P.H.S.; Time-Factors; Triglycerides-blood MESH MEDICAL SUBJECT HEADINGS: *Anticholesteremic-Agents; *Charcoal-pharmacology; *Cholesterol-blood; *Cholestyramine-pharmacology PT PUBLICATION TYPE: CLINICAL-TRIAL CN CONTRACT OR GRANT NUMBERS: RR59 RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 57-88-5 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Cholesterol AN MEDLINE ACCESSION NUMBER:88273727 UD UPDATE CODE: 8810

TI TITLE: Activated charcoal in the treatment of hypercholesterolaemia: dose-response relationships and comparison with cholestyramine. AU AUTHOR(S): Neuvonen-PJ; Kuusisto-P; Vapaatalo-H; Manninen-V AD ADDRESS OF AUTHOR: Department of Clinical Pharmacology, University of Helsinki, Finland. SO SOURCE (BIBLIOGRAPHIC CITATION): Eur-J-Clin-Pharmacol. 1989; 37(3): 225-30 ISSN INTERNATIONAL STANDARD SERIAL NUMBER: 0031-6970 PY PUBLICATION YEAR: 1989 LA LANGUAGE OF ARTICLE: ENGLISH CP COUNTRY OF
PUBLICATION: GERMANY-WEST
AB ABSTRACT: The dose-response relationship of activated charcoal in reducing serum cholesterol was determined and the effects of charcoal and cholestyramine were compared in patients with hypercholesterolaemia. In a cross-over study 7 patients ingested charcoal 4, 8, 16 or 32 g/day, and finally bran, each phase lasting for 3 weeks. Serum total and LDL-cholesterol were decreased (maximum 29% and 41%, respectively) and the ratio of HDL/LDL-cholesterol was increased (maximum 121%) by charcoal in a dose dependent manner. Ten further patients with severe hypercholesterolaemia ingested daily for 3 weeks, in random order, activated charcoal 16 g, cholestyramine 16 g, activated charcoal 8 g + cholestyramine 8 g, or bran. The concentrations of total and LDL-cholesterol were reduced by charcoal (23% and 29%, respectively), cholestyramine (31% and 39%) and their combination (30% and 38%). The ratio of HDL/LDL-cholesterol was increased from 0.13 to 0.23 by charcoal, to 0.29 by cholestyramine, and to 0.25 by their combination. Serum triglycerides were increased by cholestyramine but not by charcoal. Other parameters, including the serum concentrations of vitamin A, E and 25(OH)D3 remained unaffected. The changes in lipids only partly subsided during the 3-week bran phase. In general, the acceptability by the patients and the efficacy of activated charcoal, cholestyramine and their combination were about equal, but there were individual preferences for particular treatments. MESH MEDICAL SUBJECT HEADINGS: Adult-; Cholesterol-blood; Comparative-Study; Dose-Response-Relationship,-Drug; Drug-Therapy,-Combination; Female-; Human-; Hypercholesterolemia,-Familial-blood;
Lipoproteins,-HDL-Cholesterol-blood;
Lipoproteins,-LDL-Cholesterol-blood; Male-; Middle-Age; Support,-Non-U.S.-Gov't; Triglycerides-blood MESH MEDICAL SUBJECT
HEADINGS: *Charcoal-therapeutic-use; *Cholestyramine-therapeutic-use; *Hypercholesterolemia,-Familial-drug-therapy
RN CAS REGISTRY NUMBER OR EC NUMBER: 11041-12-6; 16291-96-6; 57-88-5 NM NAME OF SUBSTANCE: Cholestyramine; Charcoal; Cholesterol AN MEDLINE ACCESSION NUMBER:


So far, the only super charcoal sources I've seen are for fish tank filters and for soaking up household or chemical spills. If anyone finds pharmaceutical grade versions, please post. I'll enable comments on this even though it's a handbook page.

Comments

So far, the only super charcoal source OTC I've found:

http://www.drugstore.com/qxp158389_333181_sespider/little_remedies/first...<

 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Activated Charcoal link in full.  However it looks like it may be a one time use set up.  No mention of # of capsules or pills that I can find in the website.

http://www.drugstore.com/qxp158389_333181_sespider/little_remedies/first_aid_poison_treatment.htm<   

Louise CFSi/ME.CPnPositive.BbPositive.

Started6/24/07WheldonCAP.OnDoxy, Roxi, Tinii, NACi<

2/3/08TiniPulse#4 Cholestyramine 2 packetsBedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApoptosis.

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  • <
One thing about cholestyramine and activated charcoal that's started to puzzle me is the instructions regarding food. The mechanism of action is basically the same in both cases: adsorption (as distinct from absorption; with the 'd' in the word, the meaning is the sticking of molecules to the surface of the stuff, whereas the word with a 'b' means the drawing of molecules into the interior of the stuff). Yet the instructions on this website (I haven't looked much elsewhere) have been that cholestyramine is supposed to be taken with food (in particular, with a fatty meal), while charcoal is supposed to be taken without food. Now certainly foods will have some compounds that compete for the binding sites that porphyrins stick to, whether those binding sites are on charcoal or on cholestyramine. And it's conceivable that the binding sites on charcoal are somehow more subject to competition from food than are the binding sites on cholestyramine. But are the instructions here based on any actual difference in this specificity of binding sites, or is it just a matter of the two sets of recommendations having been garnered from different sources? I'm tempted to think that the instructions for cholestyramine probably had more research put into them (due to it being a recent, patented, drug innovation, whereas activated charcoal has been around for ages), and thus are the ones to follow for both substances.

Thanks for asking that so well, Norman.  I've had the same question in mind for months. 

Marysia

NACi 2400mg/dy, Doryx 200mg/dy, ramping up on CAPi for both Cpni and Lyme. CDC+ Lyme FMSi 02/06; Cpn, HHV6, and EBVi+ 03/08. 2 yrs slow improvement on variations of long-term antibioticsi for Lyme. Now slowly resuming treatment after severe porphyriai attack Diflucan 09/07.

Hi Norman, My understanding is that Cholestyramine was developed as a cholesteroli lowering agent.  Therefore it is usually taken with food and it will absorb fat from that meal and not allow its absorption.  The drug companies prefer the statins these days.   Now the use for it here in CPni treatment management is a bit different.  It is being used off label so to speak, to absorb the porphorins that are naturally passed into the bile and then on into the small intestine ultimately to be reabsorbed with the breakdown of the fats from meals.   

My thinking in the use of it for prophoria management, is that it is taken with a small amount of fat to stimulate the gall bladder to release bile and then the cholestyramine absorbs yes some of the dietary fat, but also picks up porphorins and liposacaride end,otoxins just because they are there in the bile and there is an excess of the cholestyramine.   these days I just take it at bedtime generally without any gall bladder tiggering fat, maybe a small piece of cheese before would serve the purpose.

I am cautious not to use it continuously for myself, as my cholesterol level is AOK and I am only using it once a day during the post pulse period for me (up to 10 days or so at most) this is enough to keep my porphria in check.   I have not had any emotional lability and that is one of my tip offs personally, along with brainfog, and fatigue and some anxiety. 

I know you are detail oriented and this may be to simplified for a discussion but it is a simply kitty litter type solution and if not taken too frequently should be tolerable and of little disturbance in my humble opinion.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
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  • <

 Norman- you may actually be able to tell more from the chemistry if you can find the molecule somewhere, but my understanding is that charcoal is essentially a mechanical absorbant rather than chemical binder. It binds everything pretty much, and that includes vitaminsi, other meds, etc. Cholestyramine is specific to fats, and bile acids (fatty acids) by design. I understood it as a chemical binder, i.e. specific to fatty molecules. One of the reasons it is prescribed to be taken with food is to bind the cholesteroli in food as well, I suppose, as well as the cholesterol and other fats in bile stimulated by digestion.

You may find out this is all hogwash, but that's the story I have currently, and I'm sticking to it! 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

At the molecular level, there isn't much difference between "mechanical" and "chemical" modes of action. For either charcoal or cholestyramine, what happens is that molecules stick to them because of electrostatic attractions between points at which they touch. If some molecule finds a place on the surface of the activated charcoal which it fits into, and which has negative charges where it has positive ones and vice versa, then it'll stick there.

It's certainly true that charcoal binds just about everything; I've even run across accounts of it being used to bind noble gases. And it's certainly true that cholestyramine was designed to bind one specific thing (bile acids -- not even cholesteroli per se; binding bile acids means that more cholesterol gets made into bile acids, which lowers cholesterol levels). But how selective it is in practice is another question. Its use against porphyrins is 'off-label', for one thing. So is its use (generally accepted) to soak up C. difficile toxin. It even comes with a warning to "try to take any other medications at least 1 hour before or 4 hours after you take cholestyramine because cholestyramine can interfere with their absorption". (That quote is from this web page<.) Wikipedia has a list of drugs which it has been noted to interfere with -- and since many of the drugs on that list are very sensitive to dosages, it's probable that that list only represents the drugs for which cholestyramine's absorption has been a serious practical problem, and that really the interference extends much further.

None of this means that it is as universal a binder as charcoal; indeed, it's almost certainly not. Charcoal has a very random structure, while cholestyramine is much more regular. But when it comes to considering the question of whether or not to take it with food, we only care about the sites on the surface of the charcoal which bind porphyrins. What the rest of the sites do is not particularly important; if taken with food, they may bind to some of the food, but food is eaten in such large quantities that the lossage is not important. (The exception to this is that there could be a problem with the charcoal subtracting micronutrients from the food; but unless one takes charcoal with every meal of the day, it's probably not a big problem.)

From the abstracts posted above, it seems that, weight for weight, charcoal starts off with about as many sites which bind porphyrins as cholestyramine has. The question is: is there anything about charcoal that makes those sites -- the ones that bind porphyrins -- more vulnerable to competition than the corresponding sites on cholestyramine? It's certainly conceivable -- that two sites bind the same porphyrin doesn't mean that they have to be shaped the same; they could even be completely different, and glom on to opposite sides of the porphyrin molecule. But is there any evidence that the charcoal's sites are more vulnerable? There is one thing that can be said: the charcoal's sites are probably more variegated. But whether this is a strength (a collection of sites that are more variegated being more likely to include some sites for which porphyrins have no competition within the food) or a weakness (a collection of sites which are less variegated being more likely to overwhelm the competition with numbers) is unclear.

I note also that the third of the above-quoted abstracts, in comparing charcoal to cholestyramine, describes both as being added to animal feed in given percentages -- and obtained similar results with both types of substances. That study was on cholesterol, not on porphyrins, so it doesn't apply directly; but it's a hint.

Norman, I find Charcoal in these extremely large volumes of capsules, on top of the 40 plus supplement capsules and tablets then added to the Rx abxi capsules and tablets puts me off.  I would much rather drink a large glass of Cholestyramine, through a straw, chased with clear water at bedtime.  I t sets better for me and most of all works faster for me if only because I can actually make myself do it.  

Some folks have adversions and I may adverse to all that charcoal, which taken in those quantities is not really inexpensive either. 

Always good to have options and the cholestyramine option works for me.

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <
no post

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. 

Norman- just to note, that the charcoal they are comparing in a couple of the studies is the "super" stuff. Still, it's good to be reminded that they appear similar by weight in the animal studies.

I don't know if the differences some of us feel with the cholestyramine has to do with the substance itself, or with getting the needed dose-response amount in. I can't translate the amounts used in the animal study into human terms to compare them, as I don't know if they compare by weight, i.e. charcoal is a lighter substance by volume perhaps, so that 12 caps may not equal the cholestyramine dose? On the other hand, I took a powdered form of charcoal for a time in much higher doses than one would take in capsules, and I would still say that the cholestyramine, which I admittedly I didn't try until later in my treatment, was more effective for me even compared to the higher dose charcoal. Curious.

CAP for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

I don't know what size your capsules are, but the ones I have on hand are 260 mg, so twelve of them would be around three grams. Cholestyramine packets are four grams. In any case, superior results from cholestyramine may be due to taking the cholestyramine with food, when it provokes a release of bile (and porphyrins). Part of the idea of my post was that if the charcoal that was being compared against was taken without food, then it may have adsorbed fewer porphyrins due to there being fewer porphyrins in the gut, for lack of a bile dump.

At what point would one start taking the charcoal? Are we looking for specific porphyrian effects or is it a proactive measure? I bought some and don't know if I should be taking it. When in the days routine does one take it, I can't seem to find specifics, just anecdotal type refererences..  

SPMSi< Supplementsi & NACi, Doxyi 100 mg, Azith 250 mg 3X/wk

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

I bought charcoal recently to use specifically for porphyriai, if I get it. I have no intention of taking it before that happens as I can't think of anything worse than swallowing drawing tools. Yuk. I believe you take it last thing at night.

As a preventative measure I take Yaeyama Chlorella evey day.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

Well Andesine, if you don't ever take them you could dig out the sketching pad and try it out.

SPMSi< Supplementsi & NACi, Doxyi 100 mg, Azith 250 mg 3X/wk

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

Thanks for the info peeps

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

I've found that porphyriai is disturbing enough, mentally, that it's worth fighting even when I hardly notice it, in terms of explicit symptoms. When it's strong, it manifests itself (in me) as anxiety and a mild belly ache (which I sometimes have confused with hunger -- but then it gets worse when I eat, instead of getting better). But it's worth taking charcoal for even when it's too mild to call it anxiety -- when it's just a vague, formless, mental disturbance.

Norman- I agree on taking absorbants of some kind preventatively, because the fat solubles build up and as Dr. Stratton has said, are the devil to get rid of. In other words it takes longer to bring down the build up which has been stored in fat tissue than to keep up with the dump as it goes. Now, I never followed this when the porphyriai was a significant issue for me, as back then I didn't really "get" how significant the porphyria was as a treatment issue. So do what I say, not what I did! Sealed  Even a once a day use of charcoal or cholestyramine can help you keep up, even if you are not getting obvious symptoms of porphyria. Personally, I've never found the chlorella to do anything noticeable for me and I have doubts that it is significantly antiporphyrin.

I also think you may have an important difference there, Norman. That one takes cholestyramine with food, or at least with a bile stimulator like oily potato chip, may make the difference. If you take charcoal with food you risk filling up the absorbant/binding sites with the food itself. The same doesn't go for the cholestyramine. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Charcoal capsules are very light-weight and about as easy to swallow as any of the other things we swallow.  I can swallow 4 at once with a swig of water. 

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

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. 

DMSA lowers porphyrins in study with austistic children.  Interesting. - One question is does DMSA lower porphryins directly or is it because the DMSA chelates heavy metals (and metals cause excess porphyrins) ?

  (Also to be noted, since this study was done testing urine samples and not all porphryia types can be tested by urine, if a patient has one of the types needing testing with blood or stool, then DMSA may lower porphryins other than ones tested by urine, too - one might assume but that would be a question.)

From PubMed

http://tinyurl.com/2u6nq4

 

Toxicol Appl Pharmacol.< 2006 Jul 15;214(2):99-108. Epub 2006 Jun 16.

Porphyrinuria in childhood autistic disorder: implications for environmental toxicity.

Nataf R<, Skorupka C<, Amet L<, Lam A<, Springbett A<, Lathe R<.

Laboratoire Philippe Auguste, Paris, France.

 

To address a possible environmental contribution to autism, we carried out a retrospective study on urinary porphyrin levels, a biomarker of environmental toxicity, in 269 children with neurodevelopmental and related disorders referred to a Paris clinic (2002-2004), including 106 with autistic disorder.

Urinary porphyrin levels determined by high-performance liquid chromatography were compared between diagnostic groups including internal and external control groups. Coproporphyrin levels were elevated in children with autistic disorder relative to control groups.

Elevation was maintained on normalization for age or to a control hemei pathway metabolite (uroporphyrin) in the same samples. The elevation was significant (P < 0.001). Porphyrin levels were unchanged in Asperger's disorder, distinguishing it from autistic disorder.

The atypical molecule precoproporphyrin, a specific indicator of heavy metal toxicity, was also elevated in autistic disorder (P < 0.001) but not significantly in Asperger's.

A subgroup with autistic disorder was treated with oral dimercaptosuccinic acid (DMSA) with a view to heavy metal removal.

Following DMSA there was a significant (P = 0.002) drop in urinary porphyrin excretion. These data implicate environmental toxicity in childhood autistic disorder.

PMID: 16782144 [PubMed - indexed for MEDLINE]

--- I try to fix this type and it seems to grow again, as if on steroids. So, if it sprouts again, sorry.  I cut and paste from abstracts I've put into word and they type goes bonkers.  I'd appreciate easy suggestions. 

 

Anyone taking DMSA or other metal chelators like DMPS or EDTA?  I'm looking into this and would love to hear other's experiences, especially if it has the dual benefit of reducing porphyrins.

Cheers,

Marysia 

 

NACi 2400mg/dy, Doryx 200mg/dy, Zithro 500mg/day, ramping up on CAPi for both Cpni and Lyme. CDC+ Lyme FMSi 02/06; Cpn, HHV6, and EBVi+ 03/08. 2 yrs slow improvement on variations of long-term antibioticsi for Lyme. Now slowly resuming treatment after severe porphyriai attack on Diflucan 09/07.

 

DMSA; EDTA (as Detoxamin). - While I have had three tests showing elevated mercury/nickel, etc., these were done by a ND so there has been no treatment available through regular health channels (it's pretty much ignored unless off the charts).

I have taken both DMSA and a suppository of EDTA (Detoxamin).   I really like the DMSA from www.vrp.com< but the Detoxamin was a disaster for me several times.   

 With DMSA, as with any metal chelator, it can also remove vital helpful nutrients (i.e. magnesium) so be aware of that and alternate.  Going slow is good.

 Detoxamin EDTA (750 mg. Calcium Disodium EDTA in time release from, cocoa butter and methocel E4M premium USP).  I have an unopened package that is several years old, so their formula may have changed.  

As for my experience with this, the first few days I used it I could think more clearly.  However, then the slightest sound would trigger seizures.  Now, that is typical for me, but this intensified it by a billion times.

I stopped but, over a year or two, tried it again and again, as the doctor who suggested it said it was the only thing that would work for me.  He did not sell it, so his opinion was not based on any profit on his part.  

Anyway, some oral products contain it and I've never tried those and probably won't.

 DMSA has been the best chelator for me with the least side effects.  

generally I'm not wired or weirded out - but still feel more sensitive on it, so use it sparingly loading up on magnesium and calcium on my days off the DMSA.   For myself, magnesium is my best friend.  It is amazingly calming.  I know it is a great detoxifier, but I've not investigated if it helps pull heavy metals out.   

I also use various green powders.  

Glutathione an Glutathione precursors may be of help here. Fish oils, too.

----------

Treatment choices are being considered at this time. -- (Mono -with months' long cough- in college in '71CFSi< dxi '90; proto and variagate chronic porphryias dx '95;  lyme, babesia, + ehrlichia dx '97 but no treatment available - sought alternative treatments but they did not adequately address the infectionsi  - years later I got 2 months of doxyi and I continue some herbs; elevated mercury, nickel; May '08: dx with Cpni< (chronic, persistent according to ND; past according to MD). Cpn labs: IgG 1:1024 (ref: 1:16); IgM was fine; IgA 1:256 (ref. 1:16).   -- Most isolating sxi<: severe hyperacusis w/ seizures from the slightest sound or vibration; vertigo; brain fog; pain; near paralytic exhaustion and exercise intolerance (sigh!). Hope: to be active, productive and be able to sit with others for a meal.)

 

Keebler  My husband Steve and I both have elevated heavy metal levels, and we have both had courses of oral chelation (Chelex by Xymogen) per our CAPi doctor.  We both enjoyed lowering of heavy metals from the chelation therapy, but we both still need more.  We will both put off any further chelation until after our CAP is done. 

In both our cases, but especially for Steve (since he has Lyme), the delay is due to the increased vulnerability to Candida overgrowth that comes with chelation.  He already had a longstanding yeast problem; adding the CAP and chelation concurrently helped to push him into a bad Candida crisis last year.  His mercury is still high, so at least he recently had all his remaining metal amalgams removed. 

In my case, since I am already past menopause and osteopenic, and both chelation and the CAP are osteopenic processes, it's best to delay.  My formerly high mercury level fell off the chart after chelation, but my lead and arsenic levels are still too high---no more hair dying.  Doing both at the same time just made my bone loss worse.  We both have very high antimony levels, so no more drinking water out of those plastic bottles.  We will just do what we can do until we beat the bugs, by avoidance of toxicants and by dependence on our supplementsi like NACi, ALA, and selenium, and Steve has his transdermal glutathione cream.

At one time I was a proponent of doing both the CAP and chelation concurrently, but not anymore.  And it's a shame too, because Steve especially needs any and all agents at his disposal to combat porphyriai...right now.  Your information is very appreciated; it will be a good "trick up the sleeve" if he is still struggling with porphyria at the end of his bug killing.

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

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. 

Todybear, The Vandy protocol suggests taking charcoal at 10am, 3pm and 8pm to allow for proper absorption of meals, abxi, and supps. ..that is if you have breakfast at 7, lunch at noon, and dinner at around 5. -kk2

 

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

I know this post is older, but I thought I'd tack this on... I just bought a big container (3 pounds I think?) of activated charcoal (powder) from www.buyactivatedcharcoal.com.

 It was around $50 with shipping but I think since I'll be taking it so frequently that it was better to buy it in 'bulk' and save some dough. I'm always hesitant to use up a supplement when it's in a tiny bottle.

 Happy porphorin adsorbing :D

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