LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Can Cholestyramine (CSM) make you herx right away?

 - UBBFriend: Email this page to someone!    
Author Topic: Can Cholestyramine (CSM) make you herx right away?
luvema
LymeNet Contributor
Member # 26650

Icon 1 posted      Profile for luvema     Send New Private Message       Edit/Delete Post   Reply With Quote 
I took CSM and I took a big scoop of it.

Right away I felt my heart racing and my eyes hurt. Also my neck started to hurt. I am not sure if I just got a reaction to the medication because I took a big scoop or maybe it's just my lyme symptoms.

But my question is, is it possible to get a herx reaction right away after taking something. I finished the cup and right away my heart started racing.

--------------------
Ema

Posts: 394 | From Southern California | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
I couldn't tolerate it. I will never try it again.

You are in such a fragile state neurologically, does your LLMD really think it's a good idea to take CSM right now?

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
luvema
LymeNet Contributor
Member # 26650

Icon 1 posted      Profile for luvema     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well she told me that I needed to take it.

She did this gene test where she said it's hard for me to detox mold toxins. And I am sure there is mold around me somewhere.

--------------------
Ema

Posts: 394 | From Southern California | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251

Icon 1 posted      Profile for BoxerMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, you can herx on CSM. You need to start very slowly.

If you get the same reaction from a small dose, call your LLMD. There are binders that are much more gentle.

Drink lots of water with electrolytes while on CSM. It binds minerals.

--------------------
 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
luvema
LymeNet Contributor
Member # 26650

Icon 1 posted      Profile for luvema     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you boxer mom.

You're amazing!

--------------------
Ema

Posts: 394 | From Southern California | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251

Icon 1 posted      Profile for BoxerMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have the bad mold detox gene too. It is a bummer.

--------------------
 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
luvema, go very slowly like Boxermom says. And make sure you take it 1 hour before or 3 hours after any of your supplements and meds.

I had better luck with a compounding pharmacy making it because the one that the regular pharmacies sell is made with aspartame. This did a number on my tinnitus and nerves. I am in the northeast, but I am sure there must be some compounding pharmacies out in your area that will make this.

Posts: 2331 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
girl
LymeNet Contributor
Member # 18022

Icon 1 posted      Profile for girl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Back when I took CSM they used to prescribe 10 days of Actos first (or Shoemaker did) to prevent MAJOR HERX. He said it was very important to do this if you have Lyme. Not sure if they're still doing that but I remember that the Actos turned off "TNF" which causes inflammation, so yes, if I didn't have the Actos I would have had to go very slow. In his book, Desperation Medicine, he said CSM put one woman in a wheelchair (that didn't have Actos.)

Rather than taking one huge scoop though, I'd be more inclined to take 1/4 a scoop or less 4 x day. you gotta "catch" those toxins while they're in the gut!

Also, it can cause constipation and since those toxins need to get out, I needed to address that, too.

Posts: 631 | From the south | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
treeinatree
LymeNet Contributor
Member # 38613

Icon 1 posted      Profile for treeinatree     Send New Private Message       Edit/Delete Post   Reply With Quote 
Because you have to wait 4-5 hours before taking any other meds, it would be very hard to take CSM 4 x per day.

The "Shoemaker for Dummies" presentation at 2013 iLADS emphasized starting slow - 1/16 of a scoop - and ramping up.

Does anyone know HOW CSM could cause a herx? If it's only binding and removing toxins, how could it do that?

Tree

Posts: 146 | From South | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
whitmore
LymeNet Contributor
Member # 28721

Icon 1 posted      Profile for whitmore     Send New Private Message       Edit/Delete Post   Reply With Quote 
I believe Shoemaker now suggests fish oil to prevent or reduce the Cholestyramine herx. Not sure of the dose though. Perhaps others can chime in on that.
Posts: 226 | From Princeton | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
luvema
LymeNet Contributor
Member # 26650

Icon 1 posted      Profile for luvema     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yeah,

I don't understand exactly how it causes a herx. It stays in the digestive tract and doesn't go to the bloodstream.

--------------------
Ema

Posts: 394 | From Southern California | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
"I took a big scoop or maybe it's just my lyme symptoms. "

CSM is very hard on the body (not necessarily a herx, just powerful stuff). You probably started with too much.

Start with a 1/4 teaspoon, once a day to start (I'm serious, you don't want to overdue and power through big doses at first or you'll feel horribly ill). Even with that dose, I felt like there was a brick passing through my stomach.

Good luck.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
girl
LymeNet Contributor
Member # 18022

Icon 1 posted      Profile for girl     Send New Private Message       Edit/Delete Post   Reply With Quote 
It causes a herx via inflammation, it turns on TNF (Tumor Necrosis Factor), something like that.
And I believe toxins get pulled from their storage sites.
Good to know about the fish oil which makes sense if it reduces inflammation. It's probably a high dose.

Posts: 631 | From the south | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Annthenurse
Member
Member # 5118

Icon 1 posted      Profile for Annthenurse     Send New Private Message       Edit/Delete Post   Reply With Quote 
The first dose I gave my husband was a full scoop. He Herxed terrible. After a week I started him on 1/4 teaspoon. Today I increased it to 3/8 teaspoon. However, I have been giving him it with his morning and evening meds. Have to stop that.

--------------------
Ann

Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
girl
LymeNet Contributor
Member # 18022

Icon 1 posted      Profile for girl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, don't ever give it with meds.
Posts: 631 | From the south | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Bitten in Bergen
LymeNet Contributor
Member # 34067

Icon 1 posted      Profile for Bitten in Bergen     Send New Private Message       Edit/Delete Post   Reply With Quote 
Now I'm concerned - DD (age 11) is supposed to start CSM tomorrow (1/2 packet) after being on charcoal & pectin for months.

Dr. has not prescribed actos or fish oil.

Guess I'll give a fish oil chaser, just in case?

Posts: 346 | From NJ | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Each person is different when it comes to CSM. I was scared to death before taking it. I had also taken other binders like charcoal and PectaSolC before trying CSM. I have been taking it for several months and I am doing fine with it.

I only take it once a day, so it is harder to notice big changes with it. After 4 months on CSM, I did finally pass the Visual Contrast test that I had failed twice before.

I think you have to either take it more frequently or take it for longer duration to see noticeable benefits and feel that you are ridding your body of toxins. But it does work even at one dose a day. You just have to be patient with it.

The important thing to remember is to take the CSM away from all other meds. The instructions for people trying to get rid of neuro-toxins is to wait at least 3 hours after taking CSM before you take any other meds or supplements. You can take your meds/supplements up to 1 hour before the CSM, though.

There is another important rule... CSM works best if you have something to eat (a healthy fat is best) 20 - 30 minutes after you take the CSM.

Some people get terrible cramping, bloating and discomfort from constipation when taking CSM. I have been taking a T of (FOOD GRADE!!) diatomaceous earth mixed in a cup of water each day to keep regular. The DE has many health benefits and makes me feel better as well.

I often end up doing this at night before bed if I can't find a place to squeeze it in during the day. You need to keep that away from meds and supplements by an hour or so...

For a child, you might want to mix the DE (a smaller amount such as 1/2 tsp to start) with juice to make it taste better. Just make sure you purchase the 'food grade' DE and that he/she has plenty of fluids and fiber in diet as well. You might want to start this before the CSM... Good luck!

Posts: 2331 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432

Icon 1 posted      Profile for Ellen101     Send New Private Message       Edit/Delete Post   Reply With Quote 
I asked the LLNP I was seeing about using CSM and she just shook her head and said absolutely not..we didn't get into a big discussion as to why, she just stated she felt it could cause a lot of problems and does not use it. For a child I would proceed cautiously.
Posts: 1747 | From United States | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
I wonder what she was referring to. The only problem I know of is that it can cause terrible constipation. Perhaps it is the people who take it 3 or 4 x day that it can cause major problems.

Some people are really helped by CSM with getting rid of toxins. You need a script for this, so it cannot be taken without a doctor overseeing... It did not seem to cause problems for me, but perhaps it is because I am taking the DE and the dosage is only once a day. Even with the small dosage, it is still helping me.

Bottom line is I think you need to weigh the benefits v. the risks (same as all Lyme treatment)for yourself and discuss thoroughly with your LLMD.

Posts: 2331 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432

Icon 1 posted      Profile for Ellen101     Send New Private Message       Edit/Delete Post   Reply With Quote 
I really am not sure as once she said she prefers not to use it I did not question why...I know some feel there can be long term unknowns as well. http://partnerspublishingllc.blogspot.com/#!/2013/04/cholestyramineto-use-or-not-to-use.html

It is difficult so much of what we do to get well is risky...

Posts: 1747 | From United States | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
I took one dose in 2008. I seriously thought I was going to die 10-15 minutes later. My head felt like it was going to explode and almost felt numb. Scared the crap out of me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
That was an interesting blog, Ellen. I had not heard about this book on mold and other toxins. I have been reading so much by Dr. S because he is supposed to be the guru on treating mold and related illness. He is a huge advocate of CSM.

I just wish I knew what the Billings' natural remedies would be for treating mold and other neurotoxins. I will likely order their book and read for myself.

seekhelp, that is awful. I would definitely not continue to take anything that made me feel that badly.

I wish I had the answers. After reading about CSM causing tumors in rats, it makes me rethink its use. I am surprised that it is prescribed long term for people with high cholesterol - but then again, look at the dangers of Lipitor and how half of our adult population is taking it.

MMS is quite scary to me. Charcoal is not to be taken long term. It will be interesting to learn what other options are out there. The more natural the better, as far as I am concerned. I just want whatever has gotten me sick out of my system.

Posts: 2331 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.