Started Tini & ? Choles

Submitted by Miying Meng on Wed, 2009-03-11 13:37

Feb. 21 - Mar. 11, 2009

The last week of Feb. I received my order for Cholestryamine. I was eager to try a packet to see what it would do for me. I ate two saltine crackers with butter both before and after I drank it. I mixed it with 10 oz of grape juice and followed it with a 10 oz water chaser. I took one packet before bed for three consecutive nights. The first night I did not use my usual charcoal dose at 2-3 AM. The next day my head was clearer as a result of the Cholestryamine but my body aches were worse. The second & third night I also used my charcoal and my body aches were much better. Too soon to know for sure but it also seems like the Choles has helped resolve some of my left foot numbness which began in Nov 08 when I started using Azithro. Therefore, am guessing it is possibly linked to neurotoxins?

March 2, 2009 I took my first tablet of Tinidazole 500 mg. Mon & Tues. Resulting in increased porphyria with body aches and pains along with my brain, sinuses & eyes increased pressure, numbness and irritation. However by Wed & Thurs I felt better than I normally do, in waves, which gave me much hope that the Tini would eventually do wonders for me down the road someday. Fri & Sat had whispers of a headache, sinus and eye irritation began mounting. Sat night I woke up feeling very sick indeed with much neurotoxin type porphyria evident. It occurred to me recalling something Louise had mentioned in a post. When she reaches day 5 of a pulse she begins taking Choles, etc. So then on Sun night I used a packet which made a world of difference for me. I proceeded to use it Mon & Tues nights.

(Please note: To avoid overwhelming reactions I am on a self imposed "take it slow & easy program". I am in process of working my way up to the recommended doses of meds)

Last night I had a terrible reaction. I went to bed after I took Choles but woke up a couple hours later. My brain felt numbish (numbskull) ;) and I had pressure behind my eyes. It seemed my iris functioning was on slow mo as changing light blinded me at times. But the worst feeling was my stomach was burning badly. I drank 16 oz of water to help put the fire out. Finally at 3 AM I took my 12 charcoal capsules and found relief overall. This morning when I woke up I still do have residual numbskull and eye irritation plus my ears are ringing. From lack of sleep & the porphyria I am in a worse brain fogged state today.

I am seeking some help to fine tune my program. Has anyone had stomach problems with Choles? How did they resolve it? Any tips you can share with me? Thanks.

Hi Miying...  don't worry about the "slow and easy progam"! I"m heading into year 2 and am not doing a full pulse yet.... I just physically have not been able to so it's slow and easy for me too!

I have a lot of porphyria issues.  I am actually battling right now and I am about 21 days post pulse  (plus I did a mini-pulse of 500 mg 1 day, a week ago today).

I have tried cholestrymine  2-3 times.... the first time.. no problem, the second and third time I had extreme pain in my gallbladder area.  I also ate fat before taking it and followed the instructions posted on this site to the letter.     I am apprehensive to try it again... but will.  I have resorted back to charcoal before bedtime and I take tagamet  in the AM and PM.  I also use the Yaemella chorella for my stomach/gut.  I have chitosan, but haven't tried it...... there are a few who use that as well, but I don't believe it's really documented or "proven" to really do anything for porphrins, per se.

There are quite a few here who take cholestrymine and have no problems... in searching the site there have been a few who can't, or don't like, to take it.  

I guess we each have to experiment to see what works with our bodies.... I'll give the cholestrymine another try but I may not be able to tolerate it....same may happen with you.  When I do get like this, though, a Vitamin C flush has usually worked to pull me back up as it get's to toxins out immediately and there is no discomfort whatsoever.

Isn't this fun.... NOT!  :)




JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Miying Meng, What number day of the pulse did this episode start?   You said that you started on March 2, so in my way of counting this happened on day 8 of this pulse cycle.  My strongest reactions to Tini generally have started about day 9 to 12 after the start of the pulse.  This is happening in that time frame.  I too have had headaches during pulses particularly early in pulsing as well as some light sensitivity, something like migraine-like headaches that I had so regularly earlier in my life which was often acompanied by nausea and rarely vomitting as well as pain behind the eye and in the temple area, sometimes pain that seemed to be in the middle of my head. 

Since you were able to take the cholestyramine two times without any occurance it is curious that you had such difficulty with indigestion or what might be decribed as dyspepsia with the burning pain that you describe.    I'm sorry to hear that you had a difficult night.   I have never had any indigestion in relation to taking cholestyramine. 

I wonder if adding a little low fat milk maybe 10 - 15 minutes after you take the cholestyramine would coat your stomach and give you protein to digest if it for some reason stimulates gastric secretions, just a small half glass might be helpful to try. 

Let us know how tonight goes for you and what you decided to do.



  • 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

Miying... yes... please keep us posted... don't discount what your body is telling you.... some of us are more sensitive than others. What works for one (or even several) doesn't always work for all.  There are "those few" who are hypersensitive to adjuncts others aren't.

Below are some of the side affects that were listed in the information that came with my packets (I ordered from across the sea):

Additionally, this is posted in one of the long explanations of Cholestrymine here on the site:

The most common is constipation, which is usually mild and can be controlled, if necessary by means of laxatives.
Less frequent are other intestinal disorders such as anorexia, flatulence or diarrhoea, nausea or epigastric burning.

I hope it works for you but if it doesn't  you haven't failed Image removed.  Keep those charcoal capsules in stock!



JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Miying, Another potential alternative might be ChitosanHD, High Density chitosan, LipoSan Ultrabrand available online through

page link  scroll down below the order box for a continuation of the information along with references.

I hope that you can find a way to work with the chlolestyramine if possible as I have found it far superior to the charcoal as an absorbifactant and decreasing porphyins. 

I have not used the ChtosanHD for an intensive porphyria reduction situation so I cannot really compare it to cholestyramine from that perspective.  I am using it occasionally now more as a preventative for potential buildup.    The ChitosanHD is easier because it comes in capsule form,the package instruction is that you take 4 capsules or as instructed by a healthcare professional so it looks like there maybe some that take more,  I take it away from meals with a fat stimulating snack the same way as cholestyramine and it is less expensive and more easily available.  It should not be take if you have shell fish sensitivities, it is a shellfish product.  The cautions are listed at the website read the full page.

Doxy does the same type of instense pain situation for me with gastric burning, nausea, and occasionally vomitting.  I knew it was the best and least expensive way to go and I learned to work with it.  I know many who simply say that they cannot take it.  As in all things we make our own decisions ultimately.

I wonder if you skipped the cholestyramine  last night?  That certainly would give you a break and I might have waited another day or two before trying it again.  I am hoping to hear back from you here or a pmessage reply.

Those of us with CFS are certainly some of the ones that have the hardest time with  CAP protocol in many ways it seems to me.  

I do see why Dr P has changed the way he leads people into the protocol, first starting with other ways of supporting their physiology before actually beginning Abx for CFSers.    My early days were horrendous on CAP,  I knew it was the only way for me with any hope of improvement for my unrelenting fatigue and if I didn't tolerate it, well then I would go down with the ship.   Certainly not what many people would choose.   For me I had been sick for so many years that avoiding the treatment was not an option.   Guess I am made of tough headed stuff, I suppose that could be considered incautious or foolhardy, it was my personal choice for myself.  What I have now is tremendous improvement in comparison to where I was when I start CAP, and yet for me CAP has not been easy.   I believe that I had strong porphyria as part of my CFS symptoms and CPn chronic infection.

Miying, I hope you had a decent nights sleep and are feeling steady at the moment.  I will be away starting Friday morning thru Sunday evening and am not taking a computer to my program so please know if I do not respond to you that I am going out of town.   Louise

  • 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

First off ... huge thanks to both of you. Image removed.Image removed. Your experiences have been rough and I really appreciate the knowledge you now share from it. It has been very wonderful for me receiving your encouragement and support during this time. I read your first posts & also your PM last night Louise. I was so wiped out & my eyes were so sensitive & burning I could not respond at the time so wanted to do it first thing this AM. I was delighted to receive additional information from you both today. It really helps me to figure out things I must say.

Well, I did take the Choles. again last night. I ate a wedge of jack cheese first and then repeated my usual process with the buttered crackers, C. in the 10 oz grape juice followed by a 16 oz water chaser. I wanted to find out if a small change in fat content would keep my stomach from burning. But it did not work so last night was a repeat of the night before. Except now my stomach is much more sensitive this morning with some burning even now. I had to eat crackers with the Doxy which rarely I have needed to do. I believe it must be the "epigastric burning" side effect stated in your post Jenneroz. Thanks for bringing it to my attention.

I really like the way C. clears my neurotoxins and seems to give me a bit more energy ... or is that from the Tini? Something good is happening. I put in a lot of hours yesterday physically. Baking and cleaning since my head is fogged in from lack of sleep and my eyes burn I avoided the PC monitor which makes me worse. I even had energy to walk my dogs which I haven't had for a long while. My DH was so pleased to see be outdoors walking. My left foot flares up from it so have avoided it and now today it feels like walking on a wad again but so far the pain isn't coming back. Yay! So you see I don't want to give up C. completely but will give it a rest for now for my stomachs sake.

A bit about my history. I have had to take Betaine HC w/pepsin for all my years of illness because my stomach does not make enough acid. A naturopath told me that my practice of taking Tums for years before was counter productive, etc. Also when I was a young teen I remember I sucked on milk of magnesia tablets out of a little tin I carried in my purse everyday cause my stomach burned. So am thinking maybe it is all related the way things often are in our history. I am prone to getting a queasy tummy from meds & severe headaches but it does not progress to nausea or vomitting. Prior to my illness becoming for me a disabililty in 2002, most of my adult life I was prone to "migraines" with occasional vomitting. I would stay alone in a dark room for about 48 hours of silence to get through it. I took Sudafed to alleviate the pain. Eventually inside my head made crackling sounds as pressure decreased & my sinuses would always drain and then I would get better again. This was most often a monthly thing for me so I thought it had to do with hormones from PMS. Perhaps a Cpn cycle was involved? Stress set it off eventually too. 2001 experienced a small mild shingles type rash on right shoulder which left me with chronic fatigue and constant pain in my right temple, sinus, front tooth and eye. This then always flared up from any toxins in foods or environment, etc. Now I know it was porphyria increasing until 2002 the big crash. So you can see a steady progress to my downfall.

I keep a stockpile of supplements on hand so will keep using charcoal for now. I believe I have a bottle of Yaemella chorella I tried before so may try it again too. So hard to fit everything in cause I take Bolouke (lumbrokinase) for my hypercoagulation 3 times a day (postive D-dimer with high result) and need 30 min. before meal for it. Things get complicated for scheduling in everything I need to take and remembering what not to take together, etc. I think that is why I gave up Y. chorella is cause it was hard to fit it in during the day and it wasn't critical at the time.

So tell me ... how does one know when to take the next pulse? Jeanneroz you said you are 21 days post pulse and still feeling it. It is gratifying to know work is being done so to speak, but frusterating no doubt when it goes on & on. Like you said, "Fun - NOT!" I don't know how I could cope without all of you. Nobody else really understands (or wants to) what we must go through to get well. Having said that, I must say I am thankful for a very supportive husband. He is a gem! But he can't help me with this.

So thanks again Louise and Jeanneroz for all your help. It is quite remarkable how caring you both are. I really appreciate it more than I can say. With much gratitude in my heart for you ... Miying




2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Another thought Miying, should you try the cholestyramine again it might be a good idea to remain upright for about half an hour so that there is a chance that it makes it way out of the stomach and into the small intestine.   And then, take a small protein snack, 2 - 4 oz of low fat milk, maybe try a half or a stick of mozzarella string cheese and another cracker, something so that if you actually stimulate gastric juices to flow there will be food there.   Another thought, have you ever been evaluated for H.Pylori the bacteria responsible for gastric ulcers?   What make me wonder about that is the long history of stomach problems in general which you described. 

You also might consider taking your doxy with food for a time, so that you don't get into the same pattern that I have with that wonderful antibiotic.   For myself I made a dramatic shift in progress when I started pulsing and at the same time added Cholestyramine to deal with my porphyria during the pulse.

When your eyes are back to normal take a look at the write up about the chitosanHD there are some good references at the end of the write-up about it.

This protocol is not easy for us some of us that is for sure, but in my opinion it definitely is worth doing!   Louise 

  • 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

Hi MM,

I thought I'd add to the comments here since I too use cholestyramine.  

I found it works best for me if I take it in the afternoon, not at bedtime.  I take it after my midday meal which is usually around 1 or 2.  I seldom eat lunch at noon anymore but sometimes have a small snack at that time.  Then, I take the choles while I have a meal in my stomach which is how it's typically rx'd to use when using it "on label."  

From 2 to 6 I have no worries of supplements since I don't take any until my evening meal.  Sometimes my morning supplements end up at my noon snack but I don't take any during the midday time so all is good.  If I need to eat a little more, it's not a problem with the choles.  

I take two packets in a glass of cold water.  I can't stand it if the water's too warm.  Then, I chase it with another glass of water.  

I take my evening cal/mag/D combo well away from the evening supplements and abx and then take 12 charcoal caps 2 hrs after or if I'm too tired to stay up for those 2 hrs I take the charcoal when I awake at night.  

I take the charcoal every night but only take the choles from start of my tini pulse until a few days after or longer if I feel I need to.  I have on occasion taken choles while I've been on Valcyte, w/o pulsing, just because I felt I was becoming too toxic.  

I think taking the choles while I'm upright works much better for me than at nighttime and I think charcoal helps at night which I don't want to give up.  I switched for awhile from charcoal to choles but feel now this works best for me.

I hope that helps.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

Tini really does seem to stir up the hornet's nest! My historical right eye, right temple area, right sinus pain & pressure that I assumed was cured is returning after a long absence. I think that means that my immune system must be striking at the cryptic form of Cpn hidden away in those areas if I understand things properly. So I am feeling smug after my nap to say the least. Nap was actually an attempt at the futile. My body enjoyed it but my mind spun out of control with random non stop thoughts. I have been living on 5 hours of sleep for days now. At first the Tini helped me sleep though which was divine. I will return to my bedtime melatonin now that I am not doing Cholestryamine before bed.

Great thoughts Louise and Reenie. I will try to incorporate them in my own plans to the extent I think it will help me. Sure do love your input. Thanks so much.

No Louise. I have not been checked out for H. Pylori because the Betaine HCI w/pepsin seemed to be the answer for me due to not enough stomach acid. I have not had any other issues or advancing symptoms with my stomach so never gave it a second thought.

By the way Louise, I forgot to answer your other question about pulse day. Mar. 2nd early AM I took my first Tini so I consider Monday day 1. So Sat when porphyria started hitting hard would be day 6 by my account. My eyes had been bothering me that day so I should have suspected it coming. I am learning! At any rate when I woke up with my brain feeling like it had been soaked in a bucket of water all day I knew I was in trouble. LOL <slosh, slosh> Image removed.  I get a similar affect from drinking a small amount of alcohol so for the past several years avoid drinking even a small glass of wine with dinner to my regret. Porphyria really sucks with or without antibiotics!

Much gratitude again Louise & Reenie. Your thoughts help my poor brain get going. Thanks. Will try to rework my dosing schedule.  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic.