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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone feel worse on CSM/Welchol?

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Author Topic: Anyone feel worse on CSM/Welchol?
tryingtogetwell
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I have been sick for 3 years now, and all my symptoms started after a miscarriage. Fast forward to last year and I finally found a doctor I thought could help me. After testing he concluded he thinks mold is my major problem and still isn't certain about lyme.

The first step we took was testing my house. I was living with my parents and their mold score was outrageous. My doctor and I discussed how I really needed to get away from mold before I could really begin healing.

I have finally found alternative housing which involved me moving across the country to live with a friend who had a complete remediation done and whose levels of mold in her house are almost non existent.

I figured this would be a great place to start and to heal, and I began taking my welchol after arriving this week. I took welchol instead of csm as I have gallstones and my doctor wanted something a little more mild for my stomach.

Day 1 I took and felt a little odd but it subsided after an hour. I took it again yesterday and felt really odd. I get really bad tight sensations by the temples, I feel like I am wobbling when I walk and like I feel like a drunk person who cant walk straight nor hold balance. About 3 hours after taking I literally felt like I was burning up, and this was on and off for the whole day, but when I tested my temperate was normal, and my friend even said I felt warm, but my temperature is normal.

I get random stabbing pains, tingling, and all sorts of weird sensations all over. My by far worst symptom from the start has been brain fog and constantly feeling spaced out. I feel it 24/7, and this welchol makes me feel even more toxic. I don't know if this is a good thing or it is working. I only feel this major head pressure/ plugged ear feeling when I am on certain antibiotics (same thing happened on minocycline), and now welchol.

Has anyone experienced something similar? I have emailed my doctor but don't want to keep taking something that could be dangerous for me. I don't think it is a side effect because what I am feeling is not a listed side effect of this med. The head pressure gets really bad.

Posts: 28 | From Virginia | Registered: Jan 2017  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I could not take either drug successfully. I took CSM for several months but it was like torture for me.

I don't know what to tell you other than that because this was a long time ago and I don't remember my exact symptoms while on it.

Mostly it was problems with my gut.

Do give your doctor a call tomorrow.

--------------------
--Lymetutu--
Opinions, not medical advice!

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TF
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Welcome to LymeNet! Based on what I have learned about cholestyramine and Welchol, I would say that what is happening to you is a herxheimer reaction.

This is what is supposed to happen when you take Welchol or cholestyramine. I base this statement on a talk on mold that I heard at a lyme conference a few years ago.

See the post below to see the notes I took and especially to see this sentence:

[Talking about cholestyramine and Welchol] "The treatment mobilizes the toxins. Therefore, it produces a herx reaction."

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/121800?#000000

If you are not familiar with a herxheimer reaction, it means getting worse symptoms because of the treatment you are taking.

To lessen the herxheimer reaction, you have to detoxify yourself in any and all ways possible. Some ways are: FIR sauna, hot or warm Epsom salts bath, drinking lots and lots of lemon water, taking Alka Seltzer Gold with a squeeze of lemon up to 4 times per day, taking glutathione.

So, first read my notes and be sure you are not starting out too fast with the Welchol. Then, begin flushing out all of the mold toxins from your body.

Be sure to take lots of laxatives so that the Welchol does not constipate you. Generally, you will feel better shortly after the Alka Seltzer Gold.

Also, many people swear by coffee enemas. So, give them a try for sure.

By drinking water with fresh lemons squeezed into it all day long, you will be flushing out your body all day. Lemons are a natural cleanser.

You can get the toxins out through sweating also, so be sure to try that.

You really need to get to a doctor who can tell you if you have lyme or not. But, attacking mold first is a very good start.

If you need to take a break from the Welchol to flush out the toxins, do that for a day or 2. I really do not believe the Welchol is harming you in any way.

It is uncomfortable to get out toxins. The lemon water, Alka Seltzer Gold, and coffee enemas really work. And, if you can get some glutathione, that works for people also. The IV glut works the best, and next best is suppositories. Both of these require a prescription.

Many people have a hard time detoxifying. In fact, about 25% have a hard time. So, if you are one of those, you will have to do more than other people to get the toxins out.

Be sure you drink lots and lots of water to flush yourself out.

I wish you the very best! You have taken some very good first steps.

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TF
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Here is another set of notes on mold and what happens once you get out of the moldy environment:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/112279?#000000

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tryingtogetwell
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This is what I am wondering. Some kind of detox. It makes no sense to me my body would react this way to a med if I didn't have something it was trying to treat.

Does anyone know what else welchol treats?

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TF
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The doc gave it to my husband to lower his cholesterol.

Welchol is a binder. So, it will bind to anything--the fat you eat, the medicine you take, etc, and take it out of your body in your stool.

Here is a description of Welchol:

https://www.drugs.com/cdi/welchol.html

Here is what the famous lyme disease pioneer, Dr. Joseph Burrascano says about Welchol for lyme:

"It has been said that the longer one is ill with Lyme, the more neurotoxin is present in the body. It probably is stored in fatty tissues, and once present, persists for a very long time. This may be because of enterohepatic circulation, where the toxin is excreted via the bile into the intestinal tract, but then is reabsorbed from the intestinal tract back into the blood stream. This forms the basis for treatment.

Two prescription medications that can bind these toxins include cholestyramine resin and Welchol pills. When take orally in generous amounts, the neurotoxin present in the intestinal tract binds to the resin, is trapped, and then excreted. Thus, over several weeks, the level of neurotoxin is depleted and clinical improvement can be seen. Current experience is that improvement is first seen in three weeks, and treatment can continue for a month or more. Retreatment is always possible.

These medications may bind not only toxins but also many drugs and vitamin supplements. Therefore no other oral medications or supplements should be taken from a half hour before, to two hours after a dose of one of these fiber agents.

Cholestyramine should be taken two to four times daily, and Welchol is prescribed at three pills twice daily.

While the latter is obviously much simpler to use, it is less effective than cholestyramine.

The main side effects are bloating and constipation, best handled with increased fluid intake and gentle laxatives."

http://www.lymenet.org/BurrGuide200810.pdf

Be sure you take laxatives from the start. If you don't, look out for severe constipation! One person had to go to the hospital. So, don't wait for it to happen.

My husband can't stand to be constipated, so he stopped the pills after the first day. He said, "Never again." I ended up giving them to a lyme patient to detox lyme neurotoxins.

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WPinVA
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There are some good mold groups on Facebook where you mind get some good info - Mold Avoiders, Toxic Mold Support, etc.

Charcoal is another binder that some take for mold... have you ever tried that?

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tryingtogetwell
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I did but my doctor put me back on welchol. He said charcoal really isn't strong enough to do much and wanted me to work up welchol.
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bcb1200
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You should read Dr. Neil Nathan's book re Mold called "Mold & Mycotoxins: Current Evaluation and Treatment 2016". On Amazon.

A good, fast read. He discusses how many patients get worse when starting binders because they pull too many toxins out at once and the body can't rid them fast enough.

This should go away if you lower the dose. Some patients require a VERY low dose at first and slowly ramp up over time. Good luck.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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onebeed
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I was also going to suggest Dr Nathan's book. I agree to lower the dose way, way down and start SLOWLY. People with mold problems can't detox very well and have to be careful starting out.
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Keebler
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-
In addition to others' replies, [and I've not seen Nathan's work, so do check that out] . . .

There are OTHER ways. CSM just about killed me, literally. I tried several times, and nothing was added (as is to some forms of this, so do check that to be sure no artificial sweeteners).

Stevia would be okay, though.

Still, it nearly killed me and, I suspect, it's because it can seriously deplete minerals / nutrients - especially magnesium.

Each time I tried, seizures increased in number and severity. And I felt so awful in so many ways.

I will never use this again. There may be some for whom CSM works well. But if you are not one of those, listen to your body.

Perhaps you started too high or did not add good nutrients at a time CSM wouldn't just eat them all up? The nutrients that CSM grabs MUST be replaced, somehow.

There are many other ways and I find PLANT BASED methods best. Plant based metal-binders, toxin-binders do not deplete the body of nutrients, but give the body nutrients while also helping capture the bad stuff.

Foods, too, are vital. You must eat enough good food for the body to be able to move out toxins.

A good LL ND (naturopathic physician) would be best to determine for your body, your load, your body make-up what would be best.

Some to consider: chlorella; spirulina; guggul; olive leaf extract (has some lead chelation properties), etc.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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For those considering complementary support methods / or other avenues entirely:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Herbal Safety considerations & reference books; etc.

BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees . . .
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
CILANTRO is also a consideration. Garlic, Rhubarb & Olive Leaf Extract, too, have support for detox functions.

CAROB ROOT POWDER can be very helpful, too. Just be sure to drink a good amount of water as it can be binding in the gut if not enough liquid from water / tea or foods.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036235;p=0

CHLORELLA & SPIRULINA - Information Links


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=034408;p=0

RHUBARB - for colon support
-

[ 01-30-2017, 08:29 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://ciin.org/mcs.html

About MCS (Multiple Chemical Sensitivities)

. . . Disorders of Porphyrinopathy . . . [there is Porphyria detail in the Liver Links]


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://ciin.org/

CIIN - Chemical Injury Information Network


http://www.ei-resource.org/columns/multiple-chemical-sensitivity/

Environmental Illness Resource


http://www.ehcd.com/

The Environmental Health Center - Dallas, Texas


http://lisanagy.com

Lisa Nagy, MD -

(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 2011 & 2012 annual ILADS conferences.)

TF has posted (2016) regarding MOLD suggestions:

Here are 2 sets of notes that I took from lyme conferences. The 2 speakers are mold experts. Perhaps they will give you some leads. I hope so.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/112279?#000000

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/121800#000000
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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