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
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lax mom
Frequent Contributor (1K+ posts)
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posted
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?
dbpei
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posted
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: 2386 | From New England | Registered: Aug 2011
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posted
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
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posted
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
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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
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Judie
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posted
"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
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posted
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
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posted
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
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posted
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: 348 | From NJ | Registered: Sep 2011
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dbpei
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posted
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: 2386 | From New England | Registered: Aug 2011
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Ellen101
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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: 1748 | From United States | Registered: Dec 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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: 2386 | From New England | Registered: Aug 2011
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Ellen101
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It is difficult so much of what we do to get well is risky...
Posts: 1748 | From United States | Registered: Dec 2011
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seekhelp
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posted
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
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dbpei
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posted
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: 2386 | From New England | Registered: Aug 2011
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