Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
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.
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tickled1
Frequent Contributor (1K+ posts)
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posted
Glutathione is something to consider for detox in place of cholestyramine. Doesn't work the same but I tolerated Glutathione.
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Tammy N.
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Member # 26835
posted
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.
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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
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posted
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: 2682 | From Colorado | Registered: Oct 2009
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
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.
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Tammy N.
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posted
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.
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tickled1
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posted
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.
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
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.
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
posted
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: 96222 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
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Judie
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posted
"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
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"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
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
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tickled1
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posted
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
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emla999/Lyme
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Member # 12606
posted
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.
posted
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.
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Judie
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Member # 38323
posted
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.
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CD57
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Member # 11749
posted
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?
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tickled1
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Member # 14257
posted
Bottom line is overall I believe LDN is much better tolerated than Cholestyramine. Best of luck to you!
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beaches
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posted
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 isn�t 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.
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.
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Judie
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posted
Thank you so much Beaches. This is really what I needed to hear.
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
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beaches
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posted
Yep, I know what that's like! There's only so much you can deal with at any given moment.
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posted
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
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dbpei
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Member # 33574
posted
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.
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tickled1
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posted
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.
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Judie
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Member # 38323
posted
"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
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posted
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
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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
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dbpei
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Member # 33574
posted
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: 2386 | From New England | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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: 2386 | From New England | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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
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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.
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