Cpnhelp.org

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.  

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.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

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 immunei 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 CAPi supplementsi, 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.

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.

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
prostatei 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.
• Immunei 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 IBSi.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Well I do take 5000 ncg/B-6 2mg & Folic Acidi 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 CPni 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  

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

 Louise, I don't post as much as many here but your advice has been very helpful to me. My cpni 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 

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.

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

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Timaca et al, 

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

From what I've learned online about cholestyramine and why I think it might be beneficial for some and not others in treating porphyriai as it's being used here off label is it works on binding with cholesteroli 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, IMOi, 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. 

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.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

There has been some speculation in the past that people who react badly to cholestyramine might be doing so because lowering LDL cholesteroli deprives Cpni 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. 

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

Jim~   That is a very interesting point.   My total cholesteroli 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 antibioticsi.......

Timaca

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Jim~   Do you have any articles or papers that discuss LDL cholesteroli and Cpni?   I'd love to read them and share them with my PCP, ID doc and cardiologist.

Thanks, Timaca

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

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 Cpni and it's use of cholesteroli in it's functioning.

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

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 cholesteroli and off label for IBSi.  I didn't even try to explain to him that I wanted it to treat secondary porphyriai! 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

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

I recently had a cholesteroli 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

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

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)."

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

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.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

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 supplementsi 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. 

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

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.

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CFSi 5 years, heavily suspect Lyme at this point. Last 4 years lots of  the usual research. Experience with over 100+ supplementsi. Low Vitamin Di 20 nl/ml. High normal Hemoglobin and Hematocrit always.

When cholestyramine is used to treat secondary porphyriai 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

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

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

Jim,

Thanks, as usual.  Your wisdom abounds.   

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. 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons