An update on my LDN therapy: A Miracle? An unequivocal YES!

[wmonique2]

Tex,



Except that it's a serious commitment and this girl just wanna have fun right now....



Love,

Monique

[tex]

Can't argue with that.

Enjoy.

Love,

Tex

[Pebbledash]

Update for those seeking inspiration.

I have been on LDN, 4.5 mg, for three months now. I take one budesonide each morning (kind of scared to come off of it) and I use cholestyramine once a day straight after my main meal. I take the cholestyramine as needed--between 0-2 doses, depending on how I sense I am feeling and how hard or soft my stools were the day before. BMs are between 0-2 per day, usually for the last few weeks 1 per day. Mainly solid.

Oh, I forgot to take my LDN yesterday and I was fine today, but will top up later.

In short, the LDN in combo with cholestyramine (timing is everything) has been amazing!

Paul

[tex]

Thanks for the update, and I hope that everything continues to go your way.

Tex

[Pebbledash]

Hi Tex,

Without this forum I would never have discovered:

a) cholestyramine
b) to move the dose of cholestyramine to after eating, which made ALL the difference in terms of its efficacy
c) LDN
d) that budesonide is often needed for longer periods.

These factors have (thus far, at least), been instrumental in my apparent remission. I am fortunate, too, that my GI has been hugely supportive. But the ideas came from this forum alone. I honestly don't know what I would have done as I would have not have come across the remedies that seem to work for me, and they were not on my GI's radar until I brought them up. Fortunately, she has been receptive and willing to let me try out alternative regimes.

You are a absolute hero for the work you do, for your unrelenting dedication, and tireless compassion.

THANK YOU.

Sincerely,
Paul

[tex]

Thanks Paul, I appreciate your kind remarks. Congratulations on your success —you've had a tough journey. But you've shown the kind of persistent dedication required for those who have symptoms that refuse to yield to most common treatments.

Somewhere out there, there's a solution for each of us, if we can only find it. For some, it's relatively easy. For others, it's the most difficult project we've ever attempted. Kudos to you for having the faith to continue searching for a solution until you found it.

All my best,

Tex

[tlras]

Hi Monique! It's been a long time. Perusing over the forum about Covid and saw your post on LDN. do you still take it? I take Amitriptyline 25 mgs for 23 years and I want off it. But afraid the Big D will hit. I've been in remission since 2013. for anyone taking this medication (Ami) it's VERY hard to get off of. It's giving me heart palps and interacting with my bioidentical hormone replacement therapy. I also had a few bouts of QT Prolongation. All due to this medication. I'm afraid I'm stuck on it tho. LDN sounds so promising. Please let me know how you are doing on it if you still take it. I found out my C-Reactive Protein is at 20!!! I have 3 auto-immune diseases. GYN is upping my Testosterone as it's very anti-inflammatory but I need to address my diet as I'm a sugar addict. I'm hoping that will help but with having MC who knows! I'm still gluten and dairy free. I'm without a gall bladder so things are tricky with me. I get constipated more than anything due to lack of bile. I take Ox Bile a lot. It helps get things moving.

give me an update when you can!

Terri

[KDarby]

Terri, I was on amitriptyline for a long time for sleep. It helped a lot but I decided to ween myself off bc it is a very strong medicine with lots of side effects and I wanted to go a more natural route. Plus the QT prolongation you mentioned scared me, it also causes urinary retention..I just wanted out and more natural solutions. To come off, I started taking a Benadryl (marketed diphenhydramine for sleep not actual Benadryl allergy tablets) 50mg plus melatonin at night to help with that. I haven’t been on it in years now. I started LDN yesterday and I’m excited and hopeful. There’s so much research on its efficacy. I found a compounding pharmacy near me to make me 60 pills, came out to $61. Starting low then building up to 4.5mg. If you care to Read up on it , here is a website https://ldnresearchtrust.org/. I also have weened myself off strong antidepressants which I believe were causing my MC. If I can do it, you can too! I’m here for you. Prayers this LDN is the missing link to help slow down some of this inflammation for me.
Hugs,
Kate

[tlras]

KDarby...thanks so much for sharing that with me. I'm happy to hear you got off it and it's nice to know what helped you. I belong to withdrawal groups so I would be tapering down really slow. I take oral Progesterone which helps me sleep. So maybe that could help me. idk. But I believe the Ami helps my TMJ pain so I'm not sure what to do. I was on it for the first time back in 1992...had nausea, headaches, dizziness when weaning but jumped when I found out I was pregnant and had no issues. But was only on it for 5 years. Yes, I'm having some urinary retention, blurry vision, tachycardia, lightheadedness at times cause I believe my Armour thyroid, Estradiol and Verapamil (for blood pressure issues) seems to increase the meds in my system. What were your symptoms while tapering? I've known some who couldn't get off it. It's so sad. Evil meds. I mean it blocks acetylcholine so how can that be good?!

I will check out the link...thanks so much! I worry so much about being without my Ami and getting diarrhea again..it's been a long time since I've had it. I have PTSD from that time in my life. I pray the LDN works for you. I may brave it at some point. Congrats on getting off those awful meds. You are a warrior. I'm also on a benzo and it would kill me to get off that. I'd need the help of another med to do it.

Keep me updated on how you do on the LDN. Hugs back to ya!

[KDarby]

Terri, you are a warrior yourself! So I was on Prozac and Ami for a long long time (other SSRIs before that chronically) and I was starting to wake up with night sweats, like soaking wet and having to shower and wash my sheets in the am bad…so that coupled with the fact I kept hearing SSRIs could be making my condition worse I said to hell with these drugs. I did taper down in each and every case, the Ami and the Prozac the ami I was even halving pils into fourths. I did have some insomnia and it took a good 3-4 months to feel normal. But I was constantly experiencing D even while on that. I do know now that I haven’t had night sweats again like that. I believe I was having a mild form of serotonin syndrome…at least too much for my system. If you are comfortable with those doses and not having D, maybe you could eventually try LDN and wean down some of the meds. Stopping may not be the answer right now for you. I have read many cases of the LDN allowing people to significantly cut down on dosing of other meds. Always worth a try. It’s pretty safe. Then again, you are doing a lot of changes right now so doing too much at once isn’t best either I’m sure. I don’t believe it blocks benzo receptors so you should be good there. Although it may decrease its efficacy, I’m not 100% sure. LDN is also used for pain control. I was diagnosed with TMJ also from a car wreck where I broke my jaw and I’m hoping that it helps with that, although I don’t have pain from that much anymore. I will
Keep you updated! I’m only on day 2 but I’ve noticed increased energy and while my BM isn’t fully solid, I only had 1 BM yesterday. That to me is major progress. Im taking only 2mg now and will progress up by 1mg each week until I have solid BM. This disease has caused me to never get too excited about progress but I’m staying hopeful. <3