• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cholestyramine (CSM) Treatment - Elimination of Toxins

Aerose91

Senior Member
Messages
1,400
Sorry, I have not been on here in a few days!

Yes it is quite expensive to do the PK protocol. I'm actually on a break from most of it, but still taking the balance oils. I was taking 6 caps of Phosphatidylcholine a day which would average out to $3.60 a day for that. The VSL 3 is quite expensive as well (i'm still doing that) and I take 6 caps of that a day.

Without going into extreme detail and giving wrong figures, I'd put the average (depending on everything you do) at about $200-300 a month. IV work will be much more expensive, but will get the job done quicker. One of my doctors (I use about 3 right now) uses the PK protocol for her husband (Parkinsons) and she said the cost is $125 per IV which is the direct cost because she is a doctor and primary provider.

But currently I'm doing Hyperbaric Oxygen Therapy. Tests finally came back positive for Lyme disease (long suspected it).

I wish you luck with PK protocol, if you're really toxic the detoxification can be quite nasty (reason I stopped) and uncomfortable.

Are you changing your approach at all in lieu of lyme?

I started some IVs but had to stop due to money. I can't even afford the BodyBio PC anymore so I'm taking very high doses of jarrow. better than nothing. I'm also still doing all the oils and diet.

If I may ask, what is VSL? I apologize if you already told me-?brain isn't too sharp
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Are you changing your approach at all in lieu of lyme?

I started some IVs but had to stop due to money. I can't even afford the BodyBio PC anymore so I'm taking very high doses of jarrow. better than nothing. I'm also still doing all the oils and diet.

If I may ask, what is VSL? I apologize if you already told me-?brain isn't too sharp


I guess this post was almost a year ago. I misinterpreted Lyme, but I do not have it. The bands that were reacting point to something else, but I don't remember exactly.

I also haven't taken the BodyBio PC in a while mainly because I'm allergic to soy. It didn't affect me at first, but after a while I just felt so crappy and didn't really understand why. Turns out i'm allergic to soy. I do take oils still but they're not derived from soy.

The VSL 3 which I haven't taken for a few months, but plan to order when my other probiotic runs out is a highly potent probiotic. From what I have seen, the amount of strands in VSL3 is a lot more than what I can find at the local supermarket. Meaning I can take less of VSL3 and get the same thing as the supermarket. So although appearing cheaper the stuff at the supermarket is actually more expensive.
 

Aerose91

Senior Member
Messages
1,400
I guess this post was almost a year ago. I misinterpreted Lyme, but I do not have it. The bands that were reacting point to something else, but I don't remember exactly.

I also haven't taken the BodyBio PC in a while mainly because I'm allergic to soy. It didn't affect me at first, but after a while I just felt so crappy and didn't really understand why. Turns out i'm allergic to soy. I do take oils still but they're not derived from soy.

The VSL 3 which I haven't taken for a few months, but plan to order when my other probiotic runs out is a highly potent probiotic. From what I have seen, the amount of strands in VSL3 is a lot more than what I can find at the local supermarket. Meaning I can take less of VSL3 and get the same thing as the supermarket. So although appearing cheaper the stuff at the supermarket is actually more expensive.

Wow that sucks that you were so sensitive that you even reacted to soy lecithin. Have you found anything that has helped you? And may I ask which Lyme bands you had positive?
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
Wow that sucks that you were so sensitive that you even reacted to soy lecithin. Have you found anything that has helped you? And may I ask which Lyme bands you had positive?


Biggest help to me has been diet changes and getting out of mold (which was no easy feat). I don't have my medical records because they were on paper and had to be thrown away with the other items in the house. My doc has them, but I can't remember what bands they were.
 

Aerose91

Senior Member
Messages
1,400
Biggest help to me has been diet changes and getting out of mold (which was no easy feat). I don't have my medical records because they were on paper and had to be thrown away with the other items in the house. My doc has them, but I can't remember what bands they were.

No worries. I'm preparing to go to the desert myself so I scanned all my records into the computer since I had to get rid of them as well
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Soundthealarm21 -are you still seeing PK? Patricia Kane? I used to see her and her office was not far from me. I was super sick from PC also. Allergic to soy. All of her pills, IV's, etc made me quite worse.
 

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
@Soundthealarm21 -are you still seeing PK? Patricia Kane? I used to see her and her office was not far from me. I was super sick from PC also. Allergic to soy. All of her pills, IV's, etc made me quite worse.

I was never seeing PK, but my old doctor had me on her protocol. I couldn't handle the stuff. Everything just made me feel so much worse, but everything returned to baseline after I stopped taking it all.
 

ebethc

Senior Member
Messages
1,901
Shoemaker talks about csm in Mold Warriors.

Supposedly it has a special structure that is capable of attaching itself to mold toxins. Other detoxifiers do not do that.

The main problem that people have with csm is that it detoxifies too fast. Especially if people are living in a bad place, they can get really sick on it. This includes all kinds of symptoms, including vomiting.

I couldn't take csm when I was in a bad place. It had an extremely intense effect on me in a good place, removing a lot of toxins.

I feel certain that I would not have gotten much better at all if I hadn't used this, in a good place.

CSM was originally used for high cholesterol. Apparently people concerned with that don't have sugar or nutrasweet on their "no-no" list.

I just went ahead and used the kind with sugar in it. My candida problems went away in a good place anyway.

Like every tool that we have, this one needs to be used in the right way at the right time.

There's no magic bullet, as far as I have been able to find.

(Except Lightning Process, of course.)

Best, Lisa

@slayadragon - do you think that going on a very low dose of CSM could help detox w/o making you sick?

I did a Nystatin round a few years ago and got really sick.... which would have been okay if I felt better afterwards, but I felt the same.

Have you found that zeolite helps detox mold? Have you tried infrared saunas tx, and did it help?

thanks.
 

ebethc

Senior Member
Messages
1,901
Does zeolite cause detox symptoms? I took it last week (13 drops as directed on bottle, 1x per day, 3 days last week)... This weekend I'm sick. I took some charcoal and magnesium last night and I've been drinking lots of water.. Hoping it is detox so that I can feel better afterwards (ie less moldy)
 

ebethc

Senior Member
Messages
1,901
The main problem that people have with csm is that it detoxifies too fast. Especially if people are living in a bad place, they can get really sick on it. This includes all kinds of symptoms, including vomiting.

I couldn't take csm when I was in a bad place. It had an extremely intense effect on me in a good place, removing a lot of toxins.

I feel certain that I would not have gotten much better at all if I hadn't used this, in a good place.

Hi @slayadragon
did you ever try Nystatin? Did you find CSM to work better?

I got very sick from Nystatin, and did not feel any better afterwards... All pain, no gain... I will take CSM and go through the side effects if I feel better afterwards.

also, how long does a round of CSM usually last? a few weeks to a few months? that's what I gather from reading on PR, but there isn't a lot re timing.. thanks.
 
Messages
236
Location
Medford NJ
I'll tell ya when I get there. ;) I got rid of my stuff, bought some new things and am going to stay in a tent out there. Total mold and chemical avoidance and that's where I'll do heavy methylation and detoxing. I refuse to live like this for the rest of my life and will try everything humanly possible.

I feel the exact same way.

I have a great husband who is supportive and two sons . He will get mold remediation done when I am gone. We have some mold in the basement ( nothing drAmatic no one else sick, but my oldest has add/ depression so if this works I may try to get him " clear".
I will miss my family but I am only about 30-50% " there".

I plan on going into the desert myself. I am not that bad now but every winter is hell. I am sleeping with the windows open and sleeping on the porch.
I leave all the windows open and do not use the ac . I feel like sweating a lot is a good thing.

I am on cholestyramine ( about 2 packs a day) this seems to be helping .
Good luck with your mold avoidance please keep us posted on your progress.
 

jason30

Senior Member
Messages
513
Location
Europe
Shoemaker talks about csm in Mold Warriors.

Supposedly it has a special structure that is capable of attaching itself to mold toxins. Other detoxifiers do not do that.

The main problem that people have with csm is that it detoxifies too fast. Especially if people are living in a bad place, they can get really sick on it. This includes all kinds of symptoms, including vomiting.

Best, Lisa

HI Lisa,

I wonder if the binder Activated Charcoal also takes the mold toxins with it?

Are there any other options for people which needs to detox but live in a bad place and where it's not possible to move. Is it possible to detox with smaller amounts then?
 

mrmichaelfreedmen

Senior Member
Messages
156
Location
Australia
HI Lisa,

I wonder if the binder Activated Charcoal also takes the mold toxins with it?

Are there any other options for people which needs to detox but live in a bad place and where it's not possible to move. Is it possible to detox with smaller amounts then?

Dr Shoemaker hasn't found clays charcoal etc effective when testing them. I found DE Bentonite modifilan useless. But CSM is hard to tolerate, one full serving today and can't sleep as it seems to have absorbed my sleep meds.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Dr Shoemaker hasn't found clays charcoal etc effective when testing them. I found DE Bentonite modifilan useless. But CSM is hard to tolerate, one full serving today and can't sleep as it seems to have absorbed my sleep meds.

@mrmichaelfreedmen

Yeah, you didn't know it absorbs/ binds meds?

You should take it 3 hours after meds/supplements, or 1 hour before taking them :)

GG