I am about to start this, and would like to hear what you guys have had for experiences with it. Thanks!
Posted by Keebler (Member # 12673) on :
- Be sure there are no additives at all in this, especially artificial sweeteners.
Stevia (from plants) would be okay, though. You can add stevia, carob powder or vanilla extract to help the taste but nothing really helps much.
Just shoot it on down, and chase it with a big glass of room temperature water, or warm water. Not too cold as that can be a shock to your system.
DRINK LOTS & LOTS OF WATER, all day long. Otherwise, a colon blockage can occur.
FIBER, FIBER, FIBER is also really important to keep bowels working well. Flax seed meal is one good one. Psyllium, too, but be sure it's free of ANY additive. Just plain.
Be sure when you will take your nutrients so that CSM (Cholestyramine) will not just take all those right back out before they can be absorbed and utilized. -
Posted by Dogsandcats (Member # 28544) on :
There are many posts on this subject. Put the word in the search box and you will get many discussions.
It ate up my tummy, but other people had great success.
Let us know if you have problems finding the answers you are looking for.
Posted by Keebler (Member # 12673) on :
- Some people can do this. Some have good results.
Some can't do this.
Some REALLY can't do this. (I'm one of those).
Start with a low dose and do not increase for a few days, until you are used to that. Increase slowly, over several days, etc.
If there is any agitation, sensory startles, irritation from stimuli, or the like, you may need more magnesium - taken away from the CSM.
An herb such as HOLY BASIL (TULSI) is good to have on hand as that can calm down this kind of reaction if it occurs.
Oh, and be sure to move. Yoga moves, stretching out your belly is a good thing. Walking, Gentle massage, too. PILATES would help, too.
You want to have flexibility deep into your belly, and throughout.
[And that is one sentence I never thought I'd write. Not sure you know what I mean but it's the only way I can't think to say that.] -
Posted by aperture (Member # 34822) on :
Like Keebler, I REALLY can't do Cholestyramine. Even seeing the word makes me startle now Posted by Keebler (Member # 12673) on :
- I usually do not like to post too many cautions but since we are here, IF you experience seizures, be extra careful.
For me, with seizures before taking CSM, it just made all that so much worse for me. The sensory startles intensified, etc.
Those things I mention as supports might help for those with similar reactions but - if not - remember there are other ways to achieve the same things.
If this works, fantastic. Yippee!
If not, do not push it beyond reason - or despair. I did both.
There will be another bicycle you can hop on just around the corner, so to speak.
I found: Smilax; carob root powder; Stinging Nettle; Gotu Kola; Rhubarb; Flax seed meal, etc. -
Posted by RC1 (Member # 31923) on :
Keebler, you're funny...another bicycle. Lol. So here's the thing I've contacted Dr. S's office, the one who wrote "Surviving Mold". I'm planning on going to see him if he'll take me.
My LLMD is a ND and he can't prescribe the things that Dr. S will to fix my immune system. I keep relapsing and I am so sick of living like this.
My ND is setting me up to be ready to see him. Tested me for MarCons and it's positive, so I'm starting the abx nose spray, and of course the CSM. I'm planning on taking it with high dose fish oil instead of Actos. Dr. S isn't using Actos anymore anyway (it's supposed to prevent an inflammation response)
I will keep you guys posted as to how things go down there, I have a gut feeling that this is the right thing for me to do. I'm am a little worried about the CSM though because I've read some bad stuff.
Posted by Keebler (Member # 12673) on :
- Stinging Nettle may work in the place of Actos, to lower the cytokine flare.
Your ND can tell you more.
A ND is usually FAR better suited to attend to matters of immune modulation. I don't think any one, MD or ND, though can "fix" the immune system.
Unless infections are directly and consistently addressed, the immune function will always be off kilter.
But, we must have immune support along the way.
I saw Dr. S many years ago. I recall, supplements are not part of his plan. As with many doctors of all kinds, it may take several to see the full picture.
Dr. S's work on mold is very important but it is likely not the only aspect for everyone (there are so many things to address). Still, if mold is an issue, it's the most important thing to first address according to:
Identifying Environmental Illness and Mold Exposure in Patients with Persistent Lyme Disease.
Lisa L. Nagy, MD Video $15.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
Her Web Site -
Posted by Keebler (Member # 12673) on :
- You say: " . . . I'm am a little worried about the CSM though because I've read some bad stuff." (end quote)
Just have all the measures in place and start with about 1/4 of tsp. in a 1/2 glass of water. Chased by more water.
You could even start with just 1/8 of a tsp. for a few days and give your body some time to register that before increasing. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by RC1: So here's the thing I've contacted Dr. S's office, the one who wrote "Surviving Mold". I'm planning on going to see him if he'll take me.
- see him for what??
CSM is worthless in my book and "awful" on top of it.
Posted by Keebler (Member # 12673) on :
- TuTu raises an important point:
"see him for what??"
Be sure to research the breadth of his work, know exactly what he will and won't address, will or won't treat, etc.
Talk to the lyme support groups near Pocomoke, MD.
He's very good as what he does. But no doctor is the full-menu expert. Just be sure to research the focus of any doctor you consider.
Expectations must be explored. -
Posted by aperture (Member # 34822) on :
I was damaged by Cholestyramine...my labs prove it. Labs that were always normal, and were normal the month prior, these same labs were terrible just 6 days afterward (ANA, TSH, Free T3 and Sed rate).
Cholestyramine sounds harmless.. a little medication that the body doesn't even absorb. However, if you are going to use it, wait til you get to the expert (if that's the route you choose)...don't let a novice make you his/her guinea pig.
Posted by RC1 (Member # 31923) on :
Kebbler, thanks for the links. I have been treating infections for a year and a half. Dr. B style.
I am succeptable to mold and Lyme, did the HLA DR. We have done an ERMI on the house and had plenty of mold. We are in the process of a big renovation (it needed to be done anyway)
Well anyway, the process that Dr. S uses is being used by a lot of LLMDs now. I've had all of his tests and over half are abnormal. They are all markers of neurotoxin illness. Mold, Lyme they do the same things to your body.
I have read that some LLMDs are having great success with treating the infections and implementing these other treatments. This is why I want to go to him.
He knows how to fix the abnormal markers and once those are fixed basically the immune function is restored. It makes a lot of sense to me. I've read some papers by some LLMDs stating that their patients are on abx less time and they aren't relapsing.
My ND agrees that I should go see him.
Posted by aperture (Member # 34822) on :
My current LLMD who is highly recommended, does not do Dr S' protocol. He stated that all Lyme patients have neurotoxins.
I have the HLA genotype 4-3-53, postive VCS tests and MTHFR problems. I was grasping onto the hope that Dr S' protocol would give me my life back, but it made everything worse...not saying that will happen to you.
My experience was so bad, I fired my LLMD and ran for the hills.
Posted by Lymetoo (Member # 743) on :
True that all Lyme patients have neurotoxins. Very true.
Do not rely on Dr S for lyme treatment. He does not do that.
Posted by RC1 (Member # 31923) on :
Aperture- did you take Actos or high dose fish oil to combat the inflammation response? I'm sorry that happened to you, that's terrible. I am going to start it slow.
When I started doing high dose activated charcoal I had a huge inflammation response. I've been doing that for about a year now and it has helped me quite a bit.
Lymetutu- he does treat Lyme, just in a different way, and it's not the way I would want to treat it. I am still going to be seeing my LLMD.
Dr S. fixes (with off label drugs) the MMP-9, TGF-b1, VEGF, etc. I kind of see this as a necessary step for me because I keep relapsing confections.
Posted by aperture (Member # 34822) on :
RC1: I've been on 4000 IU of fish oil/day every day for a long time...no to the Actos. My LLMD emailed me "when you get back from NY, we can talk about adding Actos" after the damage was already done. She was treating me with Dr S' protocol before she knew what she was doing...and it was dangerous in my case.
(Now she has listed on her website that she treats Biotoxin Illness...and this all happened last month)
Posted by RC1 (Member # 31923) on :
Aperture, that is awful. I'm glad that you are sharing your story, perhaps you will prevent that happening to someone else.. like me! Did you start with the full dose?
Posted by aperture (Member # 34822) on :
RC1,
No. I started with one packet a day. I was ok the first few days. By Day 5, I felt like I was dying.
Posted by lost11 (Member # 34607) on :
Can't say I've done this but read some stuff about this treatment. Seems to get mixed reviews. If you are looking for someone to fix you're immune system I don't think that's possible. Probably best for you to think deeply about exactly just what you are looking to accomplish. Could be a waste of time and money. No one doctor has the miracle cure. You mention you've been in treatment for over a year. Orals only or IV?
Posted by nonna05 (Member # 33557) on :
are you saying this CMS <cholestyramine> sp/
the script packet of orange stuff that is supposed to help die off out of body ,causes these problems?/
Are you talking about the same thing??
I had that ordered at start and now I've had a hard time finding space for it with everything else.
But try one a day/supposed to be two//
Did I save myself a lot of trouble//or am I not detoxing enough?
I also do burbur/parsley/lemon water/nystatin/ some herbs.
I don't understand how it;s harming you//what does it do// I might be feeling effects from it and not know it,,,
Every time I think I'm making headway of some kind,,I just get kicked back.
I don't even make sense to me right now with this...
On a post in General Support there's a post/link to a report/film a husband did of wife's illness.
She looks a bit like Mandy,OUS
;I watched it last night. She did all kinds of treatments ..etc went through H--l..
Then at the very end they said a doctor finally came up with what seemed to be a miracle to get her out of terrible die off,
They showed a packet of orange powder added to water ..
So I got up drank one/ and went to sleep,thinking it was a missing piece.
Then I read this.. Nonna
Sorry, am confused, sweating, pain in jaw and cheeks. all these are back after being gone for at least 8 plus days'..
The jaw and teeth hadn't hurt for a month..
Now the blurred vision is back ,was better at least two weeks
What did this stuff do to you? Bad response, but what?
Posted by RC1 (Member # 31923) on :
Lost11, I hear you...I have been thinking deeply about this. I have done some more research on what Dr. S does and it seems he gets most of his results from the CSM and treating MARcONS (nasal staph) which I am doing both now.
I think I may have been getting in the way of my own recovery, I have been taking Tylenol PMs for the last 12 years and it turns out that acetaminophen wipes out an entire days supply of Glutithione sp?.
I have also stopped Nasonex, I think I might have been having such congestion from the nasal staph and not allergies.
I am still on abx, and I am making these changes. Started CSM yesterday 1/4 of a scoop, I'm going to work my way up. I started the nasal abx spray last week.
I'm going to see where I'm at when all the dust settles and go from there.
Nonna, If you start CSM too fast it can induce an inflammatory response (herx) so from what I understand you need to start it slowly.
Thanks everyone Posted by lost11 (Member # 34607) on :
RC, That is good you are thinking about it. Tylenol has very bad affects on the liver too. Good you don't take those anymore. Have you thought about IV? I need to post an update. I did orals for a bit and made the choice to do 7 weeks of IV Rochef. Guess what? It worked. Started in Jan and have been symptom free from Lyme and babs for almost 2 months. Something to consider anyway. Sounds like you have made progress but are at a halt. Best of luck.
Posted by lost11 (Member # 34607) on :
RC, That is good you are thinking about it. Tylenol has very bad affects on the liver too. Good you don't take those anymore. Have you thought about IV? I need to post an update. I did orals for a bit and made the choice to do 7 weeks of IV Rochef. Guess what? It worked. Started in Jan and have been symptom free from Lyme and babs for almost 2 months. Something to consider anyway. Sounds like you have made progress but are at a halt. Best of luck.
Posted by sickofsick (Member # 29258) on :
My daughter is taking it. She hates the taste, but is tolerating it okay. Our doctor doesn't think mold is a problem but she uses this to remove neurotoxins. Also prescribes the VIP Dr. S uses, she must think it is helpful. I have read most of Surviving Mold, lots of it sounds familiar. Daughter was already having inflammatory response (very very high TGFb1)
Nonna,I also watched the youtube referred to. Made me hopeful. She has FL1953 too. Do you? Do you think your tooth/jaw pain is herx? Since it is one month cycle?
Posted by RC1 (Member # 31923) on :
Lost11, I got to the point where I was at about 85% I then relapsed Babs, treated that, then relapsed Bart...treating that now. I have gotten a lot better now the Bart herxing has stopped. But now I feel like the Babs is coming back again WT*?
For me it seems more about confections, I don't know if Lyme is a player, I don't think it is cycling. IV is mostly for Lyme right? I'm just stuck in this relapse cycle. This is why I'm trying to think outside of the box. I'm exercising, eating GF sugar free and clean. Got rid of the mold in my house.
I did Bicillin for Lyme for 6 months, with Doxy and Tindamax. I felt pretty good after that. It helped me a ton.
Posted by lost11 (Member # 34607) on :
You said in an earlier post your suspetible to mold and Lyme. That made me think Lyme was more of a problem for you. It very well might be. Hard to tell I'm sure. All I know is the IV worked for me. Tindamax drove out the babs. Have never felt better. Sorry you've had a rough road. Hopefully something will work.
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Nonna![[Smile]](smile.gif)