27 Apr 2018
Author
Timaca
Title

cholestyramine

Body

This thread is started to answer Louise's question to me about cholestyramine....and allow for others to discuss this medication if desired without hijacking Reenie's "Coming back to life" thread.... Wink I was originally prescribed the cholestyramine (CSM) to help me clear C. difficile (I battled that for 11 long months).    I took a VERY small amount (less than a teaspoon) once a day.

Comments

Hi Timaca,

And thanks for not hijacking my blog, although it really would be alright but it's easier for finding info later this way, I think.   Image removed.

Have you ever tried Chlorella?  I've been using it but just recently am bumping up my intake.  I recently read this when I was referred to a site that uses homeopathics and other agents for detoxing and getting well on this site:

So what is Beta-sitosterol? Beta-sitosterol has been shown to perform well in the role of breaking down the Lyme toxins. Dr. Klinghardt, at the 2003 Lyme conference, along with other medical doctors reported that it is the best nutrients they had found for helping the body eliminate the specific Lyme toxins. (For those of you familiar with the prescription Cholestyramine®, which has been used as an anti-neurotoxin, beta-sitosterol and chlorella are reported as being as effective without any of the problems common with Cholestyramine®.)

So what is Chlorella? Chlorella was reported at the 2003 Lyme Disease Conference, presented by the Academy of Neural Therapy, as a preeminent anti-toxin for Lyme toxins. It also enjoys a great reputation as an excellent detoxifier of heavy metals, such as mercury and lead. Chlorella is said to bind more toxic metals than any other natural substance. Components of chlorella actually help repair the body’s detoxification systems, dramatically increase reduced-glutathione production, kill viruses, and even bind environmental toxins such as dioxin and benzene.

BTW, I believe I read somewhere that Chlorella works the opposite of the binding effects of charcoal and of your complaint from probiotics.  I wouldn't know though as I don't have that issue.  

I don't know what  Beta-sitosterol is but maybe this would be another good detoxing agent for us to try.  I guess you can buy their combination remedy from the site link above.  

Also, I recently watched a vid clip on Dr Mercola's site where he explains how Chlorella works to bind toxic metals but leaves the good nutrients available in the body for absorption.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

I suffered severe Porphyria symptoms for the first 5 months of treatment, from June thru Nov. 2007 as well as the part of my presenting presentation of symptoms from which I received my diagnosis of Chronic Persistent Chlamydiae Pneumoniae, Chronic Fatigue Syndrome and Fibromyalgia May/June 2007.   

And although Cholestyramine may not be for everyone, I personally would not have been able to seek it out for my treatment plan without absorbing the information which was casually mentioned in member posts on this website here and there, from an occasional older forum topic post that I took the time to explore and read.

 In my personal experience, I have found that the consistent use of Cholestyramine, once daily, away from meds and major meals, with a small amount of fat in a snack (something like a rice cake and butter, or a small piece of full fat cheese or even a small handful of potato chips) to case the stimulation of bile release from the Gall Bladder as the key in reducing my personal Porphyria symptoms list.  This information shared at by individuals at this website is not a one size fits all approach and we all come with different forms of distressing symptoms, life challenges, disease presentations and in sharing the different points of view we have of the opportunity to share in ways that are truly inspiring and quite remarkable. 

Below is included the discussion that preceeded the start of this useful Forum Topic and, which I feel is relevant to the topic which was transfered here and then rreinitiated by Tamaca.    Tamaca thanks for continuing the conversation.

 

Wed, 2008-09-17 08:04 — Louise I have taken Cholestyramine with all my tini pulses starting on days 3 to day 5, except once this past summer.  It was unplanned but I just did not start and the longer past pulse day 5 the worse my fatigue etc got, finally I woke up and took my Cholestyramine,  2 packets for several nights in a row then backed it off to 1 packet it took a full week to feel that I was improving and several weeks to feel free of all brain fog. with energy again.     I personally need the support of cholestyramine to prevent reabsorption of the fatty by- products which result from the pulse.  Between pulses, I now realize when I feel a little porhy (yes, my term and I take a nightly dose  to keep up with it.)   Also the methylation supplements simple protocol I have found have been most helpful.  I attended a High School reunion and danced and danced.  When people asked what I was "doing" I talked about treatment for CFS and long term abx, folks looked like their jaws were dropping.  (Like she doesn't look sick to me!)   In my opinion, once a day cholestyramine is not nutritionally disruptive taken in that fashion, and as long as you keep your Bowel movements regular with stool softeners if necessary and watch for this potential side effect of cholestyramine, it is worth trialing to see if your brainfog, fatigue, headaches and other symptoms that have been attributable to porphyria can be ameliorated by it’s intermittent and minimal use. I know I write this over and over but I guess that since this made such a dramatic shift in my ability to maintain somewhat consistent energy and come back to life on CAP I keep saying it once again.   In response to the results from the small number of respondent to the Cholestrymine questionnaire, many of the folks that made comments about it not working very seldom post with any regularity about their experiences of CAP treatment protocol usage in general from my observations.  A number were quick to suggest that it does not work, yet when I looked at the posters notes many are not in the general and regular converstations here.Best Healing to you.  Louise ________________________________________________ CFSi/ME. CPni posititve, Bb positive. Started CAPi 6/07 Doxyi & NACi, 11/3/07 Roxi 150mgBID added to Doxy100mgBID/NAC600mgBID, 11/22/07 #2 Tinii Full pulse 500mg BID, 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses _______________________________________________________________________  Wed, 2008-09-17 10:52 — Timaca Cholestyramine made me very ill.  In some people (especially if lyme is a problem) taking cholestyramine can make you "sick as H***" to quote Dr. Richie Shoemaker.    I tried it several times, and it made me quite ill each time (CNS problems).  This does not happen to everyone.  But, it did to me.     I guess it was binding enough toxins to create an imbalance of some kind...that is all the doctors could figure out.  At any rate, I don't take it.  Plus the probiotics cause enough constipation issues without adding that into the mix!   Best, Timaca ____________________________________________________ Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBV, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibiotics for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxy bid for Cpn and acyclovir for viruses.    Wed, 2008-09-17 12:52 — Louise Timaca how many times a day did you take it and how much with each dose?  Did you take it with meals?  I only take mine once a day away from major meals with a little cheese to get the bile flowing.  I have had not problems.  I am Bb positive.  I am sure glad that it is able to clear my thinking and allow me to come up to speed some with energy.  Sorry you didn't get good results from your way of taking it. Louise ________________________________________________________ CFSi/ME. CPn posititve, Bb positive. Started CAPi 6/07 Doxy & NACi, 11/3/07 Roxi 150mgBID added to Doxy100mgBID/NAC600mgBID, 11/22/07 #2 Tinii Full pulse 500mg BID, 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.
  • 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

Timaca, I just found out why cholestyramine and other drugs we are taking/have taken may be making us "sick as hell." It's because they are depleting B-12, lowering immune system function:  LINK  Received an e-mail from my LLMD, that my B-12 levels tested extremely high. That I have pernicious anemia because my body isn't able to utilize the B-12. Add this to the drugs that are depleting B-12, and no wonder that I am so sick!

 

Then, in his second e-mail, he told me that he just received my lab results back from the pathogen specialty lab, too. That my "HHV6 levels are off the chart high." I had been tested numerous times for HHV-6 before, and never tested positive in the least. A latent viral infection that has now become re-activated, probably due to the B-12 issue. Along with others, HHV-6 is listed as one of Dr. Wheldon's henchman viruses.

 

Anyway, my point to posting this is to raise awareness that cholestyramine is one of the more notorious drugs that depletes B-12. While B-12 is part of CAP supplements, anyone taking CSM, really needs to know this. Maybe even be taking even higher doses of B-12 in the form of subliguals or injections.

 

Thank you for starting this thread and for sharing your CSM experience with others who may not be able to tolerate it, either.

 

 

RRMS, diagnosed 2/04. NAC 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephin 3/08. IV Clindamycin 5/08. USA

 

 

 

 

 

There you go, more great info from Reenie, backing up the chlorella that Sarah Longlands/Wheldon swears by! I'll bet it doesn't deplete B-12, either.

p.s. to Reenie...I think you're wise in not starting Valcyte. I just had to give up the Valtrex because it was making me so nauseated, again.

 

 

RRMS, diagnosed 2/04. NAC 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephin 3/08. IV Clindamycin 5/08. USA

Minai,

I was just reading another link about Chlorella, (they mention cholestyramine too) highlights in red, but you can find info all over the place:

 The Klinghardt Neurotoxin Elimination Protocol

3. Chlorella:
Both C.pyreneidosa (better absorption of toxins, but harder to digest) and
C.vulgaris (higher CGF content – see below, easier to digest, less metal
absorbing capability) are available. A peer-review literature list is available from
BioPure. Be aware that there are huge differences in quality. We only
recommend BioPure chlorella.
Chlorella has multiple published health inducing effects:
Antiviral (especially effective against the cytomegaly virus from the herpes
family)
• Toxin binding (mucopolysaccharide membrane) all known toxic metals,
environmental toxins such as dioxin and others
• Repairs and activates the body’s detoxification functions:
• Dramatically increases intra-cellular reduced glutathion,
• Sporopollein is as effective as cholestyramine in binding neurotoxins and
more effective in binding toxic metals then any other natural substance
found.
• Various peptides restore coeruloplasmin and metallothioneine,
• Lipids (12.4 %) alpha-and gamma-linoleic acid help to balance the increased
intake of fish oil during our detox program and are necessary for a multitude
of functions, including formation of there peroxisomes.
• Methyl-coblolamine is food for the nervous system, restores damaged
neurons and has its own detoxifying effect.
• Chlorella growth factor helps the body detoxify itself in a yet not understood
profound way. It appears that over millions of years chlorella has developed
specific detoxifying proteins and peptides for every existing toxic metal.
• The porphyrins in chlorophyll have their own strong metal binding effect.
Chlorophyll also activates the PPAR-receptor on the nucleus of the cell
which is responsible for the transcription of DNA and coding the formation
of the peroxisomes (see fish oil), opening of the cell wall (unknown
mechanism) which is necessary for all detox procedures, normalizes insulin
resistance and much more. Medical drugs that activate the PPAR receptor
(such as pioglitazone) have been effective in the treatment of breast and
prostate cancer.
• Super nutrient: 50-60% amino acid content, ideal nutrient for vegetarians,
methylcobolamin - the most easily absorbed and utilized form of B12, B6,
minerals, chlorophyll, beta carotene etc.
• Immune system strengthening
• Restores bowel flora
• Digestive aid (bulking agent)
• Alkalinizing agent (important for patients with malignancies)

Timaca, 

I also read somewhere awhile back that cholestyramine is used to treat symptoms of IBS.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Well I do take 5000 ncg/B-6 2mg & Folic Acid 800 mcg Methylcobalamine, No Shot sublingual Brand Superior source daily as my B-12 for the protocol, so that seems to be enough for me to experience the benefits of Cholestyramine, which have been huge benefits for me.  Took away all of my brainfog and improved my available energy to be able to dance the night away.

I do have documented CPn and Lyme and I take 1 - 2 packets will all of my pulses except one this summer which took me under with brainfog and emense fatigue.  Those who have gastro-intestinal decreased motility should be using a gentle laxative and stool softener during its use at another time of the day should they try this.

One other thing to check with the brand or form of cholestyramine is that anything labeled "light" has aspartame as a sweetener and this is known to cause many folks odd symptoms itself.

For me it is the right choice and at 15 months into this program I have been on it off and on as needed for 11 months.  Chorella did not clear my porphoria, charcoal is good for gas absorption andnot as good for absorptions of liquids and solids it did not work for me. 

It gets tedious to be in the postion to write time consuming posts to refute the refutations of my suggestions which are brought up without details and well written specifics.   Perhaps my suggestions are seen as less valid than the "old timers".  I kind of thought that I was beginning to be an improved "old timer".   I was a incapacitated newbie 15 months ago.  I am getting a life and feel that my suggestions have something to offer and being countered with every comment is most discouraging considering the amount of individual feedback I have contributed. 

Anyone who wants to have a conversation with me about the specifics of avoiding the pitfalls of cholestyramine is invited to pmessage me.   For now I am done trying to directly attempt to point any one in any of the directions that have helped me.  Clearly there are opinions here that are respected and those that are not.  

It is easy to say something does not work, MD's say that about CAP all the time don't they now? 

Wishing you clear minds and abundant energy for movement in life.  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

 Louise, I don't post as much as many here but your advice has been very helpful to me. My cpn load has shown to be at monster levels and I have cholestyramine. Your opinons on what has been helpful to you do indeed offer much hope for me. I can't tell you how many times I wanted to throw in the towel because as we all know this is tough to battle. 

My problem is I don't write well do to brain fog and I tend to sit back and read all the diffrent posts. All the "old timers" are my light at the tunnel of darknesss.  One thing that I've learned is some things work diffrent for others,but we should take in the advice and see what may be helpful to us. 

 Bonnnie 

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Reenie~   Thanks for the info on chollera.   It looks interesting.  I have not tried it.

Minai~  Thanks for the link.   I will read it later today.   Interesting that your HHV-6 level has now become elevated.   Certainly keep an eye on that!

Louise~  Everyone's input is valid.  What works for some may or may not work for others, but it is very important for others to know that CSM has been beneficial for you.  (I'm jealous that you can dance the night away!  I wish I could!)    It's also important for people to know that some have had a problem with it.  Hence why these discussion forums are of value.  We all can share our experiences.

I appreciate everyones feedback!!   

Best,    Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Timaca et al, 

I'm a newbie here but I've done alot of online research and it's my nature to do so.  Image removed.

From what I've learned online about cholestyramine and why I think it might be beneficial for some and not others in treating porphyria as it's being used here off label is it works on binding with cholesterol and its on label use is for lowering cholesterol, by binding with the LDLs (bad cholesterol) but not the HDLs. (good cholesterol)  Hence, when you take it, you are getting rid of some of the "bad cholesterol" along with the fat soluble toxins causing porphyria.  

So, since my cholesterol is high I did a little research on it.  But, I have extremely high HDL, not LDL.  In fact, my Dr's office called yesterday to discuss my latest cholesterol test.  It's considered FINE because of how much HDL (the good cholesterol) I have.  My ratio is thrown off by my extremely high HDL, but HDL works similarly to what you're doing with cholestyramine, (this is my own analogy as a non med pro) in that it binds the LDLs and clears them out along with the other fatty toxins such as porphyrins.  

I feel if I were to use cholestyramine it would rob my body of too much of something I don't have too much of and could create other problems, for me.   

So, maybe, IMO, it would be wise to know your total cholesterol numbers and then also your specific LDL/HDL numbers before using this prescription med.  Then, maybe one would know if taking cholestyramine would be beneficial for them by the nature that it works.  

Just sharing my thoughts.  Image removed.

BTW, I recently read that taking chlorella a half hr before eating gets it where you want it and that it's supposed to work better that way than how I was taking it, with meals.  I'm going to try that now to see if it gives more benefit.  

Thanks for starting this thread.  I think it's helpful.  

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

There has been some speculation in the past that people who react badly to cholestyramine might be doing so because lowering LDL cholesterol deprives Cpn from using it to maintain cell inclusions. Cpn needs cholesterol to survive and maintain it's integrity inside the host cell. Cholesterol deprivation can cause die-off. If your LDL is already low, you might be starving Cpn of needed materials. 

Two other possibilities I can think of for the sensitivity are some kind of allergic reaction to the components, or some kind of gut permeability problem that allows absorbtion of the substance, which otherwise should remain in the intestines and passed through.

At any rate, charcoal taken in enough quantity does the trick as well, just more difficult to find the timing. There are sources for powdered charcoal that can be mixed in water and taken in larger "slugs" at once than you can in capsules. 

Jim~   That is a very interesting point.   My total cholesterol has always been around 200.   I am quite thin, and used to be a serious recreational athlete (prior to getting ill).   My HDL was always high, my LDL low, and my ratio fine, so the cardiologist didn't worry about my total  cholesterol.

I'll be getting a cholesterol panel done next week.   It will be interesting to see what all the levels are.   I still eat very well, but sadly haven't been able to exercise much at all.

Interesting thought that my use of CSM might have actually been causing a die-off.   It certainly was a herx like reaction....very similar to when I take antivirals or antibiotics.......

Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Look up US Patent Application number 20060241174
Mueller; Anne ;   et al.
October 26, 2006
Vitamin E tocotrienols inhibition of intracellularly obligate pathogen Chlamydia and methods of use

This patent describes and refers to the relationship between Cpn and it's use of cholesterol in it's functioning.

Timaca et al,

I have decided to ask for an rx for cholestyramine and to do a little experiment with it to see if it helps more so than charcoal and chlorella or not.  So far, as I've posted in my blog here, I'm still not feeling good enough to begin my next pulse and I'm waiting for another week or so before pulsing to see if raising my thyroid meds will do the trick, fingers (and toes) crossed.    

Then, I will begin cholestyramine once I get the mail order rx filled.  My Dr was fine with ordering it because it's used for lowering cholesterol and off label for IBS.  I didn't even try to explain to him that I wanted it to treat secondary porphyria! 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Yes, Reenie, trying to explain some things to some doctors is really not worth the effort.  

I recently had a cholesterol panel run, so it will be interesting to see where my LDL level is (with regard to Jim's theory on why my reactions are severe to CSM.)

Best of luck with the CSM.      Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Cholestyramine, apparently, will drop your thyroid levels quickly. God knows what else that rides the enterohepatic highway that  Cholestyramine, Charcoal, Chlorella, etc. will carjack.

"Cholestyramine, an ionic exchange resin sequesters T4 in the intestine and increases its fecal excretion. These phenomena were proven in hamsters in mid 1960s (7). Experimentally, it has been shown that 50 mg of cholestyramine can bind approximately 3000 μg of T4 (8) and therefore can enhance the clearance of thyroid hormones. Because of the increased enterohepatic circulation of thyroid hormones during hyperthyroidism, attempts have been made to sequester these hormones in the intestine using ionic exchange resins (9-13)."

Doxy 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFS since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Bio,

I think the timing of taking meds is crucial when one is using absorbing agents such as cholestyramine and charcoal. The drug interactions are listed HERE and I think it would be prudent to take it as far apart from dosing anything that it might interfere with.  

 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Bio- two critical issues in the quote you cite are "Experimentally" because this indicates binding in a test tube, not the intestines, and "during hyperthyroidism" because excess T4 is dumped by the body through the intestines. This has little to say in hypothryrodism as less of it is recirculated by this pathway as it is used by the body. 

We have a lot of folks here who have their thyroid hormones monitored regularly as part of their treatment and none of them have reported any reduction in hormone levels related to either charcoal or cholestyramine. 

The information you've found is useful for anyone trying to figure out why these supplements are problematic for them, but I would not want anyone discouraged from taking them by needless worry: the neurotoxicity of porphyrins their reactive oxygen species create real damage in the body and cause significant distress. 

Jim,

Atcually the test did mention they found increased T4 clearance in hamsters.

 >We have a lot of folks here who have their thyroid hormones monitored regularly as part of their treatment and none of them have reported any reduction in hormone levels related to either charcoal or cholestyramine. 

I wasn't aware of that. I wanted to point this is out for people are having a side effect they could not explain.

 >but I would not want anyone discouraged from taking them by needless worry: the neurotoxicity of porphyrins their reactive oxygen species create real damage in the body and cause significant distress.

I agree.

Doxy 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFS since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

When cholestyramine is used to treat secondary porphyria symptoms is it taken with or without food?

Does it matter?  I thought I'd experiment before doing a pulse to see how this stuff works.  

TIA Image removed.

 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Reenie- Concensus has been to take cholestyramine with at least some fat (potato chips have been a favorite). I've taken it with meals, as it is prescribed for in cholesterol problems, as well as between meals. Both have seemed as effective to me.

Jim,

Thanks, as usual.  Your wisdom abounds.  Image removed. 

I just chugged down my first packet along with a protein shake for lunch but this sounds like a good excuse for adding potato chips to my diet.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

This is an interesting thread.  If i understand correctly, these medications/supplements are used to help clear the body of undesirable lipids.  It's interesting that EBV causes lipids to lodge in heart muscle, perhaps this is the way it infects the heart.  See Dr. Martin Lerner's web site:

http://cfsviraltreatment.com/personal_statement/index.html

Also, his 2008 video presentation touches on the above.  

I reviewed a history of my cholesterol tests, and sure enough, a few years after becoming seriously ill my LDL/HDL ratio flipped - i used to have very low LDL and a ratio of .93.   This is good material for my next CpN physican appointment.

Thank you all.  

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

I thought this was a good place to include what Dr Teitelbaum says about using cholestyramine (Questran) in his SHINE protocol for neurotoxins: 

___ 164. Questran (Rx) - 1 packet or scoop 4 times a day mixed with water or apple juice. Take ½ hour before eating meal containing fat. Binds other treatments so take them at least 1 hour before or 4 hours after Questran if possible. Can cause severe and dangerous constipation. Take #180-186 as needed to have at least 1 bowel movement a day. If Questran flares your symptoms, stop it and take Actos (Rx) 45 mg a day for 5 days first and for 8 more days after resuming Questran and then retry Questran (and consider adding antibiotics). See the Neurotoxin information sheet for detailed instructions - also do the Vitamin C Flush and, if needed, the "Alkaline Way" Diet with it. Information sheets available on www.Vitality101.com.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

   

I suffered severe Porphyria symptoms for the first 5 months of treatment, from June thru Nov. 2007 as well as being  part of my presenting presentation of symptoms from which I received my diagnosis of Chronic Persistent Chlamydiae Pneumoniae, Chronic Fatigue Syndrome  and Fibromyalgia  May/June 2007.   

And although Cholestyramine may not be for everyone, I personally would not have been able to seek it out for my treatment plan without absorbing the information which was casually mentioned in member posts on this website here and there, from an occasional older forum topic post that I took the time to explore and read.

 In my personal experience, I have found that the consistent use of Cholestyramine, once daily, away from meds and major meals, with a small amount of fat in a snack (something like a rice cake and butter, or a small piece of full fat cheese or even a small handful of potato chips) to case the stimulation of bile release from the Gall Bladder as the key in reducing my personal Porphyria symptoms list.  This information shared at by individuals at this website is not a one size fits all approach and we all come with different forms of distressing symptoms, life challenges, disease presentations and in sharing the different points of view we have of the opportunity to share in ways that are truly inspiring and quite remarkable. 

Below is included the discussion that preceeded the start of this useful Forum Topic and, which I feel is relevant to the topic which was transfered here and then rreinitiated by Tamaca.    Tamaca thanks for continuing the conversation.

 

Wed, 2008-09-17 08:04 — Louise I have taken Cholestyramine with all my tini pulses starting on days 3 to day 5, except once this past summer.  It was unplanned but I just did not start and the longer past pulse day 5 the worse my fatigue etc got, finally I woke up and took my Cholestyramine,  2 packets for several nights in a row then backed it off to 1 packet it took a full week to feel that I was improving and several weeks to feel free of all brain fog. with energy again.     I personally need the support of cholestyramine to prevent reabsorption of the fatty by- products which result from the pulse.  Between pulses, I now realize when I feel a little porhy (yes, my term and I take a nightly dose  to keep up with it.)   Also the methylation supplements simple protocol I have found have been most helpful.  I attended a High School reunion and danced and danced.  When people asked what I was "doing" I talked about treatment for CFS and long term abx, folks looked like their jaws were dropping.  (Like she doesn't look sick to me!)   In my opinion, once a day cholestyramine is not nutritionally disruptive taken in that fashion, and as long as you keep your Bowel movements regular with stool softeners if necessary and watch for this potential side effect of cholestyramine, it is worth trialing to see if your brainfog, fatigue, headaches and other symptoms that have been attributable to porphyria can be ameliorated by it’s intermittent and minimal use. I know I write this over and over but I guess that since this made such a dramatic shift in my ability to maintain somewhat consistent energy and come back to life on CAP I keep saying it once again.   In response to the results from the small number of respondent to the Cholestrymine questionnaire, many of the folks that made comments about it not working very seldom post with any regularity about their experiences of CAP treatment protocol usage in general from my observations.  A number were quick to suggest that it does not work, yet when I looked at the posters notes many are not in the general and regular converstations here.Best Healing to you.  Louise ________________________________________________ CFS/ME. CPni positiive, Bb positive. Started CAP 6/07 Doxyi & NACi, 11/3/07 Roxi 150mgBID added to Doxy100mgBID/NAC600mgBID, 11/22/07 #2 Tini Full pulse 500mg BID, 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxinsxs x 1 week after pulses _______________________________________________________________________  Wed, 2008-09-17 10:52 — Timaca Cholestyramine made me very ill.  In some people (especially if lyme is a problem) taking cholestyramine can make you "sick as H***" to quote Dr. Richie Shoemaker.    I tried it several times, and it made me quite ill each time (CNS problems).  This does not happen to everyone.  But, it did to me.     I guess it was binding enough toxins to create an imbalance of some kind...that is all the doctors could figure out.  At any rate, I don't take it.  Plus the probiotics cause enough constipation issues without adding that into the mix!   Best, Timaca ____________________________________________________ Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBV, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibiotics for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxy bid for Cpn and acyclovir for viruses.   Wed, 2008-09-17 12:52 — Louise Timaca how many times a day did you take it and how much with each dose?  Did you take it with meals?  I only take mine once a day away from major meals with a little cheese to get the bile flowing.  I have had not problems.  I am Bb positive.  I am sure glad that it is able to clear my thinking and allow me to come up to speed some with energy.  Sorry you didn't get good results from your way of taking it. Louise ________________________________________________________ CFS/ME. CPn posititve, Bb positive. Started CAP 6/07 Doxy & NAC, 11/3/07 Roxi 150mgBID added to Doxy100mgBID/NAC600mgBID, 11/22/07 #2 Tini Full pulse 500mg BID, 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

___________________________________________________________

CFS/ME. CPn posititve, Bb positive. Started CAP 6/07 Doxy & NAC, 11/3/07 Roxi 150mgBID added to Doxy100mgBID/NAC600mgBID, 11/22/07 #2 Tini Full pulse 500mg BID, 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

 

  • 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

Cholestyramine, generic   as available at www.drugstore.com website

Entire Monograph

 

Adult DosingDosage forms:  

4 g/scoop pwdr; 4 g pwdr pkt

 

Special Note

formulation clarification

Info: 1 scoop/pkt regular formulation = 9 g powder = 4 g cholestyramine; 1 scoop/pkt sugar-free formulation = 5 g powder = 4 g cholestyramine; dosing presented in g cholestyramine

 

Hypercholesterolemia

4-8 g PO bid

Start: 4 g PO qd-bid, may incr. dose by 4 g/day q4wk; Max: 24 g/day; Info: give before meals; may dose 1-6x/day

 *pruritus

4-8 g PO bid

Start: 4 g PO qd-bid, may incr. dose by 4 g/day q4wk; Max: 16 g/day; Info: give before meals; may dose 1-6x/day; for pruritus assoc. w/ cholestasis, uremia, polycythemia vera

 

*pseudomembranous colitis, adjunct tx

2-4 g PO bid-qid Max: 16 g/day; Info: give before meals; may dose 1-6x/day; not for severe diarrhea

 

renal dosing

no adjustment

HD/CAPD: no supplement

 

hepatic dosing

not defined

Peds Dosing

Dosage forms:  4 g/scoop pwdr; 4 g pwdr pkt

Special Note

formulation clarification

Info: 1 scoop/pkt regular formulation = 9 g powder = 4 g cholestyramine; 1 scoop/pkt sugar-free formulation = 5 g powder = 4 g cholestyramine; dosing presented in g cholestyramine

*hypercholesterolemia

6-12 yo

Dose: 80 mg/kg PO tid; Alt: 2-4 g PO bid; Max: 8 g/day; Info: give before meals; may dose 1-6x/day

adolescents

Dose: 4 g PO bid; Alt: 80 mg/kg PO tid; Max: 8 g/day; Info: give before meals; may dose 1-6x/day

 

renal dosing

see Adult Dosing

renal impairment: dose adjustment may be required although specific pediatric dosing adjustments not defined; see adult renal dosing for guidance

 

hepatic dosing

not defined

 

Contraindications/Cautions

  • hypersens. to drug/class/compon.
  • biliary obstruction
  • caution if constipation
  • caution if CAD
  • caution if renal dysfxn
  • caution if volume depletion
  • caution if >60 yo
  • caution if PKU (sugar-free forms)

 

Drug Interactions

Avoid/Use Alternative

Monitor/Modify Tx

Caution Advised

 

Adverse Reactions

 

Serious Reactions

  • fecal impaction
  • intestinal obstruction
  • metabolic acidosis
  • fat-soluble vitamin deficiency
  • folate levels decreased
  • osteoporosis (long-term use)

Common Reactions

  • constipation
  • abdominal pain
  • flatulence
  • nausea
  • vomiting
  • dyspepsia
  • eructation
  • anorexia
  • steatorrhea
  • bleeding
  • rash
  • urticaria
  • fatigue
  • fecal impaction

 

Safety Monitoring

Pregnancy: C

Lactation: Safe

Monitoring Parameters
no routine tests recommended

 

Look/Sound-Alike Drug Names
[from www.usp.org]
cholestyramine confused with: chlorpheniramine

 

Pharmacology

Metabolism: none;

CYP450: none;

Info: no systemic absorption

Excretion: feces; Half-life: unknown

Class: Cholesterol Lowering

 

Mechanism of Action
binds intestinal bile acids

 

Manufacturer/Pricing

Manufacturer: generic

 DEA/FDA: Rx 

Approximate Retail Price

from  www.drugstore.com 

powder:

  • 4 gm/dose (1 can, 378 gm): $37.00

powder:

  • 4 gm/dose (1 can, 210 gm): $50.00

Patient Education - English

Show Spanish

  • Generic Name: cholestyramine
  • Pronounced: koe le STYE ra meen
  • Brand Names: Cholestyramine Light, Locholest, Locholest Light, Prevalite, Questran, Questran Light

What is the most important information I should know about cholestyramine?

  • You should not take this medication if you are allergic to cholestyramine, or if you have a blockage in your stomach or intestines.
  • Before taking cholestyramine, tell your doctor if you have a thyroid disorder, diabetes, kidney or liver disease, or chronic constipation.
  • Avoid taking other medications at the same time you take cholestyramine. Wait at least 4 to 6 hours after taking cholestyramine before you take any other medications.
  •  

What is cholestyramine?

  • Cholestyramine helps reduce cholesterol (fatty acids) in the blood. High cholesterol is associated with an increased risk of heart disease and atherosclerosis (clogged arteries).
  • Cholestyramine is used to lower high levels of cholesterol in the blood, especially low-density lipoprotein (LDL) ("bad" cholesterol).
  • Cholestyramine powder is also used to treat itching caused by a blockage in the bile ducts of the gallbladder.
  • Cholestyramine may also be used for other purposes not listed in this medication guide.

  

What should I discuss with my healthcare provider before taking cholestyramine?

 

  • You should not take this medication if you are allergic to cholestyramine, or if you have a blockage in your stomach or intestines.
  • Before taking this medication, tell your doctor if you are allergic to any drugs, or if you have:
    • a thyroid disorder;
    • diabetes,kidney disease,
    • liver disease, or
    • chronic constipation.

 

If you have any of these conditions, you may need a dose adjustment or special tests to safely take cholestyramine.

 

FDA pregnancy category C. This medication may be harmful to an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant during treatment.

 

Taking cholestyramine can make it harder for your body to absorb certain vitamins your body needs while you are nursing a baby. Do not take cholestyramine without telling your doctor if you are breast-feeding.

This medication may contain phenylalanine. Talk to your doctor before using cholestyramine if you have phenylketonuria (PKU)

.

How should I take cholestyramine?

Take this medication exactly as it was prescribed for you. Do not take the medication in larger amounts or for longer than recommended by your doctor. Follow the directions on your prescription label.

Cholestyramine is sometimes taken up to 6 times per day. Follow your doctor's instructions.

 

Take cholestyramine with meals unless your doctor tells you otherwise.

Mix the cholestyramine powder with 2 to 6 ounces of water or other non-carbonated beverage. You may also mix the powder with a brothy soup, crushed pineapple, or applesauce. Measure the powder using the scoop provided with your medication. Do not use any other scoop or measuring cup to measure your cholestyramine dose.

 

Drink extra fluids to prevent constipation while you are taking cholestyramine.

It is important to take cholestyramine regularly to get the most benefit.

Cholestyramine is only part of a complete program of treatment that may also include diet, exercise, and weight control. Follow your diet, medication, and exercise routines very closely.

To be sure this medication is helping your condition, your blood may need to be tested on a regular basis. Do not miss any scheduled appointments.

Store cholestyramine at room temperature away from moisture and heat.

 

What happens if I miss a dose?

Take the missed dose as soon as you remember. If it is almost time for your next dose, wait until then to take the medicine and skip the missed dose. Do not take extra medicine to make up the missed dose.

 

What happens if I overdose?

Seek emergency medical attention if you think you have used too much of this medicine.

Overdose symptoms may include severe stomach pain or constipation.

 

What should I avoid while taking cholestyramine?

 

Avoid taking other medications at the same time you take cholestyramine. Wait at least 4 to 6 hours after taking cholestyramine before you take any other medications.

 

What are the possible side effects of cholestyramine?

 

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

 

Call your doctor at once if you have a serious side effect such as:

  • blood in your urine;
  • severe stomach pain;
  • ongoing constipation;
  • feeling short of breath;
  • black, bloody, or tarry stools; or
  • easy bruising or bleeding.

Less serious side effects may include:

  • mild constipation, diarrhea;
  • stomach pain, nausea, loss of appetite, weight changes;
  • bloating or gas;
  • hiccups or a sour taste in your mouth;
  • skin rash or itching;
  • irritation of your tongue;
  • itching or irritation around your rectal area;
  • muscle or joint pain; or
  • dizziness, spinning sensation; ringing in your ears.

This is not a complete list of side effects and others may occur. Tell your doctor about any unusual or bothersome side effect.

 

What other drugs will affect cholestyramine?

 

Cholestyramine can make it harder for your body to absorb other medications, such as:

  • a blood thinner such as warfarin (Coumadin);
  • digoxin (digitalis, Lanoxin);
  • propranolol (Inderal);
  • a diuretic (water pill);
  • thyroid hormones such as levothyroxine (Synthroid, Levoxyl, Levothroid);
  • birth control pills or hormone replacement;
  • seizure medicines such as phenytoin (Dilantin) and phenobarbital (Luminal, Solfoton); or
  • an antibiotic such as amoxicillin (Amoxil, Trimox, others), doxycycline (Adoxa, Doryx, Oracea, Vibramycin), minocycline (Dynacin, Minocin, Solodyn, Vectrin), penicillin (BeePen-VK, Pen-Vee K, Veetids, others), tetracycline (Brodspec, Panmycin, Sumycin, Tetracap).

This list is not complete and there may be other drugs that can interact with cholestyramine. Tell your doctor about all your prescription and over-the-counter medications, vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start a new medication without telling your doctor.

 

Where can I get more information?

Your pharmacist can provide more information about cholestyramine.

 

Remember, keep this and all other medicines out of the reach of children, never share your medicines with others, and use this medication only for the indication prescribed.

Every effort has been made to ensure that the information provided by Cerner Multum, Inc. ('Multum') is accurate, up-to-date, and complete, but no guarantee is made to that effect. Drug information contained herein may be time sensitive. Multum information has been compiled for use by healthcare practitioners and consumers in the United States and therefore Multum does not warrant that uses outside of the United States are appropriate, unless specifically indicated otherwise.

Multum's drug information does not endorse drugs, diagnose patients or recommend therapy. Multum's drug information is an informational resource designed to assist licensed healthcare practitioners in caring for their patients and/or to serve consumers viewing this service as a supplement to, and not a substitute for, the expertise, skill, knowledge and judgment of healthcare practitioners. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. Multum does not assume any responsibility for any aspect of healthcare administered with the aid of information Multum provides.

The information contained herein is not intended to cover all possible uses, directions, precautions, warnings, drug interactions, allergic reactions, or adverse effects. If you have questions about the drugs you are taking, check with your doctor, nurse or pharmacist.

CONDITIONS OF USE: The information in this database is intended to supplement, not substitute for, the expertise and judgment of your healthcare professional. The information is not intended to cover all possible uses, directions, precautions, drug interactions or adverse effects, nor should it be construed to indicate that use of a particular drug is safe, appropriate or effective for you. You should consult your healthcare professional before taking any drug, changing your diet or commencing or discontinuing any course of treatment.

  • 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