What kind of fool am I?

Submitted by paron on Thu, 2007-10-18 03:17

Charcoal. It's annoying to schedule the two-hour NPO gap around taking it. The capsules tend to float up and get stuck in my esophagus. If the charcoal hasn't had time to wet down, a small cloud of it comes up if I burp -- and it makes me burp. Good thing I don't smoke!

All this is to say that there are perfectly understandable reasons why I stopped taking it a few months ago. I was pushing way too hard; so hard that I quite literally didn't have the energy to eat enough at mealtimes. I had to eat what I could tolerate, then wait a while until I had enough energy to eat some more. Needless to say, this made scheduling around charcoal nearly impossible.

That's when I discovered that glucose could suppress the porphyria to some extent. I started to depend solely on glucose: tastes better, easier to schedule, and cheaper.

Well, I'm here to say: if you have porphyria, candy is dandy, but charcoal is more effective. (I couldn't get it to rhyme; I'm no Ogden Nash.) I recently resumed my charcoal regimen, and the improvement has been dramatic. It's definitely worth the extra trouble, time, and expense to use charcoal properly if you have a lot of porphyria.

Undecided Sigh.

 

Ron 

Here's my sig!

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Hi Ron,  I would find it ever so motivating if you could talk a bit about the improvements that have been "dramatic" for you. 

Your take on the difficulty in finding time for Charcoal has been expressed by others and myself. 

The middle of the night routine is not so great for me as I take one small dose of Klonopin at HS (hour of sleep) to allow me to sleep a full 6 -7 hours in a row because my wakefulness once I reawaken makes for a short nights sleep. 

So I am left with mid day ingestion and I do this off and on and yes for me it also decreases my appetite and even with a 4 hour window for foods, meds, and supplements I still am concerned about it sucking up all the good stuff too!    

I am very faithful to my supplements and  my Emergen-C several times a day. 

For those in the USA  Walmart has it for $5.00 less that my local health food store Price at walmart is $8.38 for 36 packets/ 1000mg Vit C as Mineral Ascorbaltes with 32 minerals and 8 B Vitimins and tasty too.  I put it in a bottle of water and have a fizzy drink!   Louise 

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 2400 mg. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

 Charcoal Alternative- I've found that Questran (cholestyramine), a prescription substance used to absorb cholesterol from the gut before it's ingested, is much more effective at clearing porphyrins than charcoal. As it's a resin which binds fats chemically rather than mechanically as does charcoal, it does not absorb other things like water soluble vitamins and such. More important, it can be taken with meals. It is still probably not a good idea to take it with medications, but one can take it closer to meal times without so many worries. Like charcoal it does tend to constipate, so you have to  counter that. And unlike charcoal it is more costly, although my get covered on prescription plans. I have found it much better on porphyrins. Anyone else tried it?

Ron- it's good to hear from you. I know that many of us who have done this the longest, especially with CFS, seem to be too busy to update progress posts. That includes me. This may be good news in that we are doing well enough to live more demanding lives. It would really help the newer members if we could update our stories. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Welchol (Colesevelam) is a similar drug. 

I have a bunch of professional samples of it that my doctor gave me before deciding she wanted me on a statin instead.  I couldn't tolerate the statin so now she has me taking nothing.   Although I have asked the question bluntly more than once, my doctor won't tell me why she thinks that if I need a statin but can't tolerate it, doing nothing is preferable to the more modest reductions achieved by using Welchol, but that's why I'm looking for a new doctor and is starting to get off topic.  

I had read in Burrascano, "Advanced Topics in Lyme Disease" that anti-cholesterol drugs that work in the digestive tract are effective in binding bacterial endotoxins.  As I still had the Welchol sitting a drawer and knew that I tolerated it, I figured I had nothning to lose.   I think the prescribed dose of WelChol is 3 pills, twice a day, but because of my limited stock, I have just been taking one at bedtime.  I then chase it with 1,000 mg of charcoal when the nocturia wakes me up around 3:00 a.m.  I've only been doing this for a little while but so far it has worked much better than larger doses of charcoal alone.   

CAP for M.S. since 8/2007. Currently: 200 mg Dox. Waiting to start Zith & Flagyl.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

HDWHIT, Thanks for the information.  Wondering if it is more expensive or less than Questran.  I had a client once that was embroiled with her insurance company regarding her need for it.  She was minus parts of her small intestine due to Crohn's surgery and no longer had the spincter that regulates the bile duct.  What ever they wanted to substitute was not effective for her particular situation.  Does your sample include side effect information and precautions?  Louise

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 2400 mg. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Don't know the price since I was given samples by the doctor.  The Welchol samples did have patient information attached, but they long ago disappeared.  You can get it off the Welchol site (http://www.welchol.com) and it does have information and precautions.   

CAP for M.S. since 8/2007. Currently: 200 mg Dox. Waiting to start Zith & Flagyl.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Jim K, Is your RX for the powder packets?  How many packets are you taking if this is the form that you have been prescribed?  Does it come in a tablet forms? Again how much and how often are you taking it?    Louise 

 

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 2400 mg. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Paron, Last winter I slammed the Charcoal. At certain times it really helped, other times it made my blood sugar level take serious dives. I have not done it in a few months because of the blood sugar blues. kc dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxy 200mg/day azith 250 mwf and NAC only 600mg. No vitamin d now since the combo makes me go beserk. Comi
dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On mino 100mg/day biaxin 1000mg day and NAC 600mg. ldn 2.0mg.

well, so far soo good.  I have been taking the glucose for the endotoxins & it does an ok job.  I had a great laugh about the charcoal dust burps, that has happened to me too.  so have that floating capsule things & I drink lots of water; I just find it  a pain!

It is quite rare that I can fit in the charcoal as I have to take my supplements & eat something & at nite I have a 1.5 hour regimen of sleeping pills before I knod off to sleep.  Even if I wake up I don't get out of bed unless it is absolutely necessary as it affects my ability to return to sleep afterward.

For now, I continue to chomp the glucose even though it plays with my sugar cravings.  Presently, the best of the evil

Image removed.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metro

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

 Louise- Yes it's the packets and I try twice a day during pulses especially, but probably should be taking it more. If the Welchol works as well it sure might be easier to take as pills than the yukky orangish stuff the Questran is. I'll have to take a look at the WelChol and see if it does the same thing.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Louise --  less fatigue, quicker recovery to 'non-pulse' wellness, better sleep, etc. Less sick, in other words. However, it's very hard to quantify.

 

Jim K's post and the other's have some easier-to-implement altenatives that I need to check out. In the mean time, if you have porphyria, do what you can to get that charcoal down, especially the nighttime dose, is my experience.

 

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent