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 » Cholestyramine or LDN first????

 - UBBFriend: Email this page to someone!    
Author Topic: Cholestyramine or LDN first????
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has anyone here taken Cholestyramine and LDN (low-dose naltrexone)?

If so, can I hear your experience?

My LLMD wants me to try these. He was non-committal about what to start first, however he doesn't want me to start them together because I'm very sensitive to meds.

Was one of them easier on your body?

I'm taking a break from antibiotics right now because of a bad allergic reaction (trust me, it wasn't a herx) and have a bad sore throat (I think I'm coming down with a cold, it's really red).

The LDN is suppose to help my immune system and the Naltrexone is to bind to stuff to get it out of my body.

Any advice would be appreciated.

Thanks... I'm a little scared. I've had so many allergic reactions to meds.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
I couldn't tolerate cholestyramine but am tolerating LDN very well. I recommend starting very low and slow w/it though like 1.5 mg to start and stay there for awhile and you may not be able to get to 4 or whatever the standard LDN dose is.

I too am incredibly sensitive like you and LDN is working out and has been for the better part of a year. Cholestyramine not so much.

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Glutathione is something to consider for detox in place of cholestyramine. Doesn't work the same but I tolerated Glutathione.
Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835

Icon 1 posted      Profile for Tammy N.     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would guess to start with LDN. I think it is generally well-tolerated, whereas the same cannot be said of cholestyramine.

Suggestion -- with the LDN, start slowly so you don't experience sleep disruptions in the beginning. I opened the capsule and started with 1/3 the dose, then worked up to 1/2, then 2/3, then the full dose. I did that over about a 10 day or 2 week period. Had no issues with sleep.

Best to you.

Posts: 2238 | From East Coast | Registered: Jul 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 
Thank you!

I'll try the LDN first.

Hey Tammy - What are the sleep disturbances? I wasn't told about that.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
faithful777
Moderator
Member # 22872

Icon 1 posted      Profile for faithful777     Send New Private Message       Edit/Delete Post   Reply With Quote 
I used LDN for 6 months and got no improvement from it. Glutathione helps a lot.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

Posts: 2680 | From Colorado | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
The first time I tried LDN I couldn't tolerate but that Dr. started me at too high a dose at 4mg. This time around I started at 1.5 and it has been a much better experience.
Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835

Icon 1 posted      Profile for Tammy N.     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't know much, but I was told from someone here on Lymenet that it can cause sleep disturbances. I asked the pharmacist about it and she said it can happen, but if you open capsule and start slowly there really wouldn't be any issues. Worked for me.
Posts: 2238 | From East Coast | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
If it's prescribed in a small enough dosage per capsule no need to open it. I don't see how you would know exactly how much you're getting that way either.

Sleep disturbances can happen if the dosage is too high for you which happened to me at 4 but starting at 1.5 no issue whatsoever.

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606

Icon 1 posted      Profile for emla999/Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
A word of caution to taking Cholestyramine (CSM).


CSM can lower your thyroid hormone blood levels. So, you may want to have your thyroid hormones such as Free T3 and Free T4 measured prior to taking CSM and then have your thyroid hormone levels checked again while taking CSM..... especially if you are experiencing a worsening of symptoms while taking CSM. And if you already have hypothyroidism then taking CSM may potentially make you feel even worse.


http://www.ncbi.nlm.nih.gov/pubmed/18946743


http://jama.ama-assn.org/content/208/10/1857.abstract


Actually, CSM is so effective at lowering your thyroid hormones it can be used in the treatment of HYPERthyroidism (high blood levels of thyroid hormones)


Low Doses of Cholestyramine in the Treatment of Hyperthyroidism


http://clinicaltrials.gov/show/NCT00677469


.

Posts: 1223 | From U.S.A | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just a guess, since I hated CSM .. I'd be willing to bet that it is harder to take than the LDN.

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

Posts: 95427 | From Texas | Registered: Feb 2001  |  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 
Wow, so much info the doc didn't tell me.

I have no thyroid problems, but I certainly don't want to have that problem. Yikes!

I started at 1mg of the LDN last night. I had very lucid dreams and woke up feeling ungrounded. I'm a very grounded person, so this was an unusual sensation (not crazy about it).

Other than that, nothing too interesting on the LDN.

I'm concerned about the CSM and thyroid now. I'll ask my doc about it. Thanks!

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
beaches
Frequent Contributor (1K+ posts)
Member # 38251

Icon 1 posted      Profile for beaches     Send New Private Message       Edit/Delete Post   Reply With Quote 
Low and slow is the way to go with the LDN. We learned that the hard way, unfortunately!

My advice would be to take 1mg LDN for a month or two, then begin the 2mg and stay on that for a month or two before moving up to the 3mg dose, which I've been told is the optimal dose.

IMO, LDN is an awesome, life-changing medication. But it took many, many months for us to notice even a slight difference in immune function.

FYI everyone, the LDN is dispensed via certain compounded pharmacies. Visit the LDN site for more specific info.

And another thing to be aware of--since LDN is a compounded medication, the dosing can be customized. Usually, that means beginning at 1mg daily.

And also FYI, people often notice their thyroid antibodies returning to normal/below normal ranges after taking LDN for awhile.

So, it's advisable to get thyroid labs drawn on a regular basis when a person is taking LDN.

Posts: 1885 | From here | Registered: Jul 2012  |  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 
"My advice would be to take 1mg LDN for a month or two, then begin the 2mg and stay on that for a month or two before moving up to the 3mg dose, which I've been told is the optimal dose."

Thank you! This is really helpful. I was thinking of ramping up in a couple weeks, but this sounds waaaaaay safer and better for me in the long run.

Posts: 2839 | From California | Registered: Jul 2012  |  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 
"My advice would be to take 1mg LDN for a month or two, then begin the 2mg and stay on that for a month or two before moving up to the 3mg dose, which I've been told is the optimal dose."

Thank you! This is really helpful. I was thinking of ramping up in a couple weeks, but this sounds waaaaaay safer and better for me in the long run.

I'll probably phase in the CSM in a few weeks very slowly and with a low dose.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
beaches
Frequent Contributor (1K+ posts)
Member # 38251

Icon 1 posted      Profile for beaches     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Judie,

As far as I'm concerned, slow and steady wins the race re: LDN.

IDK why more docs don't recommend this approach, but IMO based on what I know/read, it's the optimal way/approach.

FYI, effects of LDN are oftentimes not noticed for a very, very long time vis a vis immune system blood tests such as WBC for example. Let me know if you'd like more info.

I don't know much about the Cholestyramine aspect of this, but my initial impression is that it isn't contraindicated for any other tx.

Good luck with everything! Please let the rest of us know how you make out.

Posts: 1885 | From here | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
I second what beaches says. Don't ramp up for at least a couple mos. and agree there's no reason to go above 3mg. And yes, it is compounded and can be compounded for the eact dosage so no need to open capsules. It is also inexpensive which is a nice change from all the other stuff we've all taken for Lyme.

If you're sick of bombarding your system with drugs that cause all kinds of horrible side effects I'd definitely do LDN before trying cholestyramine if ever. I don't think I'll ever revisit CSM.

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606

Icon 1 posted      Profile for emla999/Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Judie,


I have never personally met a doctor that knew that CSM could lower thyroid hormones. So, your doctor may not be aware of this. And thus you may have to print out those articles and show them to your doctor.


CSM can also lower other hormones and nutrients from the body besides thyroid hormones.


And often you will hear that CSM can cause a "cytokine storm" reaction but in my opinion the negative reaction that some people get from taking CSM may be due to the fact that CSM can lower blood levels of thyroid hormones, other hormones and lower levels of certain nutrients within the body.


CSM can be both helpful and harmful. But you shouldn't be afraid to use it as long as you know the possible effects and how to lessen and monitor those possible side effects.


.

Posts: 1223 | From U.S.A | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Healing in Santa Cruz
LymeNet Contributor
Member # 7798

Icon 1 posted      Profile for Healing in Santa Cruz     Send New Private Message       Edit/Delete Post   Reply With Quote 
My LLMD has me on Chlostepure instead of Cholestamine less side affects. Glutathione also helps me a lot.

My doc gives me Meyers Cocktail Glut pushes and I also take a great pill form of Glutathione.

Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005  |  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 
This is getting way too confusing for me.

As I said before I don't have any thyroid problems, so all this talk about the thyroid is going completely over my head.

I don't have it in me to learn all the details about something with a low probability of happening to me. Too much on my plate already.

Can you please simplify this in terms of these meds?

Will both of these make me hyperthyroid and/or hypothyroid? Yes or no?

Is this a sure thing?

Thanks.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
CD57
Frequent Contributor (1K+ posts)
Member # 11749

Icon 1 posted      Profile for CD57     Send New Private Message       Edit/Delete Post   Reply With Quote 
BEaches did you only (eventually) find that LDN was working because it altered immune function, or because of how you felt? Also, it took a long time?
Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bottom line is overall I believe LDN is much better tolerated than Cholestyramine. Best of luck to you!
Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
beaches
Frequent Contributor (1K+ posts)
Member # 38251

Icon 1 posted      Profile for beaches     Send New Private Message       Edit/Delete Post   Reply With Quote 
Judie, LDN helps regulate your immune system. From what I have read/understand I do not believe it can make you hypo/hyper thyroid. So if this isnt a problem for you to begin with, no worries.

On the other hand, if you are hypo/hyper thyroid, LDN could very well put your thyroid hormones into normal ranges.

Check out- http://www.lowdosenaltrexone.org/ for more info.

CD57- We ramped up the LDN slowly-it took a few months to get to the optimal dose of 3mg. It took several more months before we saw improvement in her labwork and symptoms.

Posts: 1885 | From here | Registered: Jul 2012  |  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 
Thank you so much Beaches. This is really what I needed to hear. [Smile]

I just don't have it in me to worry about any more, there's just so much going on already.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
beaches
Frequent Contributor (1K+ posts)
Member # 38251

Icon 1 posted      Profile for beaches     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yep, I know what that's like! There's only so much you can deal with at any given moment.
Posts: 1885 | From here | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
WendyK
LymeNet Contributor
Member # 18918

Icon 1 posted      Profile for WendyK     Send New Private Message       Edit/Delete Post   Reply With Quote 
Could someone elaborate on what it was about cholestyramine that they couldn't tolerate? I'm supposed to have started taking this by now, but I'd like some more information. Thanks!

--------------------
Wendy

Posts: 253 | From Near Albany, NY | Registered: Jan 2009  |  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 
Some people have GI problems after taking CSM (cholestyramine). It can also make you more fatigued and uncomfortable. I started taking CSM about 2 weeks ago to help with my poor detoxing.

Initially, I thought it was helping me as my tinnitus and other auditory symptoms quieted down after I took. But after a week or so, I noticed that I felt more fatigued and all of a sudden, my symptoms flared. I then learned that CSM contains aspartame, which is a trigger for tinnitus and NOT good for anyone.

This could also mean that it was actually helping me and I was herxing. But after reading on this thread that it can mess with your thyroid, I opted to try a different binder. I am using activated charcoal now, but can't report much as I just started it yesterday.

Posts: 2360 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Caused severe constipation for me along w/other digestive issues. It can also cause cytokine storm. It made me feel worse all the way around. Doctor said we could try again at some point and start w/baby doses and very slowly work up but I'm all set w/it.
Posts: 2541 | From Northeast | Registered: Jan 2008  |  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 then learned that CSM contains aspartame"

I haven't tried it yet, but my doc had me get it from the compounding pharmacy so it doesn't have all the additives.

From what I recall, Neil Nathan at the ILADS conference said to only use the compounded version so it doesn't contain sweeteners.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
SusanH
Member
Member # 40582

Icon 1 posted      Profile for SusanH     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started taking CSM this past week. I get major headaches and fatigue for the first time in my 8 months of lyme treatment.

I've cut back the dose for now.

No other issues from it, though, as far as reflux or bowel movements.

Posts: 83 | From Sarasota, Fla | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is alcohol the same thing? My doc wants me on it three pills twice a day. He said to watch for extreme constipation.

I reminded him I have diverticulitis but he said it shouldn't be a problem

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  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 
It has been several months since I last posted on this thread. I got the compounded CSM from Hopkinton Pharmacy and it has not caused any problems for me.

It can make you constipated, but if you drink enough water and have enough fiber, you should be okay. I find that food grade diatomaceous earth really helps to prevent the constipation as well. (good for you in many other ways too) I take 1 T per day in water.

I take my CSM 1/2 hour before lunch and try to have my afternoon supplements/herbs at least 3 hours later. When you only take 1 T per day, you have to stay on it a long time for it to help you detox.

Randibear, I don't know what you mean by your question about the alcohol.

Posts: 2360 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
Rats...so sorry.. computer again...

I meant welchol.......I hate this thing.....

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  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 
[lol] Now I get it! I think Welchol is used like CSM, but is not as strong. Maybe some others can chime in that use it.
Posts: 2360 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
I swear yall are going to have to be mind readers until I figure this computer out. It comes up on my screen as ok but then it appears as something else entirely...

Dang it.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  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

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.