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 » Poll re LDN.....please share your experience

 - UBBFriend: Email this page to someone!    
Author Topic: Poll re LDN.....please share your experience
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm interested in starting Low Dose Naltrexone......would like to gather info from those who have experience with it.

Please answer the following questions:

1. What dose of LDN did you start with?

2. Based on your experience what dose would you advise one to start with? Is dose based on body weight etc?

3. How long did it take you to titrate up to the optimal dose?

4. What side effects did you experience after short and/or long term use?

5. What benefits did you experience after short and /or long term use?

6. Were you on abx while taking LDN?

7. Is it better to be on abx while taking LDN?

8. How long did you use or have been using LDN?



Thank you all for your support!
JJ

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
anyone?
Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
SickLYme
LymeNet Contributor
Member # 34104

Icon 1 posted      Profile for SickLYme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have the same questions....very much considering it...
Hopefully you'll get some answers

Posts: 148 | From AZ | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
jackie81
LymeNet Contributor
Member # 27031

Icon 1 posted      Profile for jackie81     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been on it for just over a month. I started at 1.5 mg and just upped it to 3 mg about 2 days ago.

i didnt have any side effects. I was wondering about insomnia but it didnt happen to me.

i have noticed that I actually sleep better now and i have way more energy now .

other than that Im not sure if Ive noticed any other big changes but hopefully when this dose builds up I will have some news to report

Posts: 573 | From Out there somewhere | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
baileypup
LymeNet Contributor
Member # 22824

Icon 1 posted      Profile for baileypup     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've Been on LDN for two years at 4 mg.

Titrated monthly; started at 1 mg. then 2.5 mg, then up to 4 mg.

Had some minor insomnia the first week or two, then it abated.

I've been on abx the whole time.

I've increased my CD57 from 60 to as high as 217.

It doesn't work immediately, but eventually will assist your immune system in kicking in.

I can't recommend it highly enough.

I take it with 300-600 mg. Metabolic Maintenance Alpha Lipoic Acid.

Posts: 964 | From san diego | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great responses guys.......hopefully we will hear from others.
Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
LLMD has prescribed a 2mg dose of LDN to start ......I'm thinking that a lower dose may be better.

Have any of you divided the contents of the LDN capsule in order to start with a lower dose.....how did you divide it?

Thank you!

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
jlcd1
LymeNet Contributor
Member # 18138

Icon 1 posted      Profile for jlcd1     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started with 3mg for a month and then went up to 3.5mg and have been on that for almost a yr.

My mustle's hurt a lot more for the 1st month and then I just felt like I had a little more energy. I do take abx at the same time. I believe it is helping.

Posts: 908 | From Albany | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239

Icon 1 posted      Profile for Dekrator48     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started with 1.5 mg x 1 week, then 3 mg x 1 week, then 4.5 mg. I used sublingual drops from a compounding pharmacy.

I was on it for 4 months I think.

At first I slept longer...a couple hrs longer each night and then that wore off.

I did not notice any benefits as far as pain relief, so I tapered off of it.

I was on antibiotics at the same time.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
skies
LymeNet Contributor
Member # 28064

Icon 1 posted      Profile for skies     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just started LDN myself on Sunday. I'm taking 2 mg.

I don't have any advice on dose vs. weight, but I'm really petite and sensitive to lots of meds, so I'm sure that's why my doc started me there.

I haven't raised the dose yet, probably won't for a little while.

I've noticed a bit of an increase in my insomnia (unfortunately I have an issue there to begin with). I also woke up once during the night with strange "pains" in my legs (almost like what one would describe as "growing pains.")..I went back to sleep after a little while and didn't notice it again. I find that interesting b/c my lyme symptoms are mostly neuro with minimal pain, and never in the legs.

I just started back on some abx after a while off of them (treating w/herbs, giving body a break). I just started bicillin LA over the weekend.

--------------------
"The simple things can get you through the hardest times."  -

Posts: 628 | From Connecticut | Registered: Sep 2010  |  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 took LDN before I knew I had Lyme. No abx while on it. Started on 4.5 mg right away and stayed on it for 6 months. Only benefit was some better sleep. I just got off after realizing it wasn't really doing anything for me.

--------------------
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
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for your responses.

jlcd1...in what way is LDN helping you?

dekrator and faithful.....I'm sorry you did not notice any benefits.....if the main purpose of this med is to modulate the immune system I'm not sure that the effect would be noticeable.

Skies....I'm also petite and my llmd prescribed 2mg...... I thought it might be a little high to start with but now that I hear your llmd started you at the same dose I guess I'll try it and see what happens.

Any other experiences?

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Have you tried to run a search on LDN yet? There have been many other posts on this topic before. It is always good to search because you will find answers from everyone and not just the people that are here right now.

My doc had me start at 1.5 or 2mg, I don't remember exactly. I titrated up quickly within the month. It was very easy to tolerate. Made my dreams more intense at first but that was it.

I take it to help support the immune system and help with inflammation. I don't really feel anything right now. I think it helped reduce pain initially. You'd have to look back at my earlier posts to help me remember!!!

Even though it has not helped me drastically I continue to take it. My mom has MS and I have severe neurological symptoms that would land me an MS diagnosis if I had not been diagnosed with Lyme. So, I would like to prevent any autoimmune problems if possible. This is a simple, not harmful way of trying to help the body.

I take 4.5mg, the max dose. Dose is not based on weight.

Good luck!

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
jwall
LymeNet Contributor
Member # 22999

Icon 1 posted      Profile for jwall     Send New Private Message       Edit/Delete Post   Reply With Quote 
My LLMD just started me on it as well. started me on 1 mg and building up to 4 mg over the course of the month - so add 1 mg per week until I reach 4 mg.

I am petite and am very sensitive to meds. The first night I took it, I had insomnia, tossed and turned. I was really discouraged, but decided to keep taking it.

I have been fine ever since. I think I want to sleep an extra hour or so in the morning whereas before I would be wide awake ready to jump out of bed.

I also notice very vivid dreams. That's about it for now. I think it is helping my pain.

I'm going to stay on it because my LLMD says it boosts the immune system. He also has my 5 year old on it who has Lyme, yeast issues - 1 mg for him.

He said our immune systems are so suppressed based on lab work and LDN will help bring our numbers up - CD57, etc.

Posts: 618 | From NC | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks sammy & jwall.....very helpful info.....I will also try to research previous posts about LDN.
Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
SickLYme
LymeNet Contributor
Member # 34104

Icon 1 posted      Profile for SickLYme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow these posts are very helpful. What happens when you stop taking it? Can you maintain the CD57 or should you be able too? Is this a lifelong medicine for lymies?
Posts: 148 | From AZ | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
BuffyFan
LymeNet Contributor
Member # 34679

Icon 1 posted      Profile for BuffyFan     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's a site to get more info

www.lowdosenaltrexone.org

Posts: 287 | From somewhere | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
The first time I tried it was last fall and no matter how low the dose, I had trouble with needing to urinate all the time.

Then my thyroid went bonkers and someone suggested I might have hasimoto's disease which I searched and realized that is probably what I have been suffering from for twenty years. I was told I have antibodies against my thyroid which of course is auto immune, and I have had nodules for many years, both of which indicated hashimoto's.

As the hyperthyroid symptoms I was having were unbearable, I felt I needed to try LDN again. This time I ordered it in 50mg tablets which I crushed and mixed myself in bottled water so I don't get any fillers. I began with 1 mg and worked up. I have had no problem at all.

After a couple of weeks, I raised it to 2 mg. I am at 3 mg now and this is as much as I will take. I quit the armour thyroid I was taking when my thyroid went hyper and I have not re-started it. I don't think I need it. I feel fine.

I am not taking drugs for lyme except protomyxzoa. I just started stromectol. I am also treating methyl cycle mutations.

My son is taking LDN to halt the progress of beta cell destruction in type one diabetes. I hope it keeps him from becoming insulin dependent. My husband takes it for prevention.

The dog is getting it for cancer. The vet did an ultrasound on the dog and said he had liver cancer. A month after starting LDN, another ultrasound showed the tumor had shrunk slightly and there was less fluid. The dog is 15 and doing well for his age.

I will stay on it for the rest of my life. It is miraculous.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536

Icon 1 posted      Profile for lightfoot     Send New Private Message       Edit/Delete Post   Reply With Quote 
1. What dose of LDN did you start with?

.......I started with 1.5 mg x 1 week, then 3 mg x 1 week, then 4.5 mg compounded by Park-Irmat.

2. Based on your experience what dose would you advise one to start with? Is dose based on body weight etc?

.......I would do as recommended....seems easy to tolerate.

3. How long did it take you to titrate up to the optimal dose?

.......Three weeks and then been holding steady.

4. What side effects did you experience after short and/or long term use?

.......I experienced urgency to urinate during the night....I quit it for a month, however I noticed I lost the benefits. I no longer take it before bed but around 5 to 8 PM. This has eliminated the urgency to urinate. I've read that now they are finding it needn't be taken at bedtime....I don't have the reference.

5. What benefits did you experience after short and /or long term use?

.......More energy and brighter mood....It hasn't helped my sleep but then that is a problem area for me anyway.

6. Were you on abx while taking LDN?

.......Part of the time, yes

7. Is it better to be on abx while taking LDN?

.......Can't answer that question

8. How long did you use or have been using LDN?

.......About a year now.

I hope it is benefiting the immune system.

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6951 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow these posts great......hope others will to add to this very helpful thread!

Buffyfan thank you for the link re LDN.

Nefferdun, thank you so much for posting your experience......I'm so glad that you're not having problems with LDN on your 2nd try with it.

It's also really exciting to hear that LDN may be regulating your thyroid to the point where thyroid meds are not needed!

I have hypothyroid issues and I want to try LDN first before I decide to go on Armour......I hope LDN will make thyroid meds unnecessary......but I'm concerned about starting with 2mg as my LLMD has prescribed.....I want to start more slowly.

Quote: "As the hyperthyroid symptoms I was having were unbearable, I felt I needed to try LDN again. This time I ordered it in 50mg tablets which I crushed and mixed myself in bottled water so I don't get any fillers. I began with 1 mg and worked up. I have had no problem at all."

Nefferden, based on what you stated above:

How did you get the 50mg tablets......did you have a script from your MD or can one get this without a script?

Can you please explain further how you eliminated fillers and how you started with 1mg by mixing it in water (sorry for my ignorance)?

Lightfoot, thank you so much for taking the time to answer each of my questions.....your info is very helpful!

It's interesting to hear that you eliminated the urgency to urinate by taking it between 5-8pm.....this is really good to know.

Do you think that the compounded LDN is better than the pills? What is the cost difference between the two, if you don't mind sharing this info?

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536

Icon 1 posted      Profile for lightfoot     Send New Private Message       Edit/Delete Post   Reply With Quote 
from JJ29
Do you think that the compounded LDN is better than the pills?........

I don't know. I used one of the main pharmacies at the main website.....they are all compounding pharmacies, I believe.

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6951 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
This is the pharmacy where I ordered it in 50mg tabs. I got 60 for about $160 which is enough to last the dog and I about 20 months.

https://www.riverpharmacy.ca/

I found this site on an LDN forum and was told it is one of the safest places to order. You don't need a script.

I bought a 10 millimeter measuring syringe from KMart for about 3-4 dollars. I crush the tables in a small bowl and add 5 of the 10 millimeter syringes (so it comes to 50 ml) of bottled water (distilled is best). That way each ml contain 1 mg of LDN. I stir it until it is dissolved and then pour into a small bottle. A leftover tincture bottle works great. I use a dropper that is marked for one ml. So one dropper or 1 ml is equal to 1 MG.

If you want 2 mg per dropper, just add 25 ml instead of 50. Shake it well each time before you use it and it must be refrigerated. Some people have trouble with the fillers used.
This is extremely cheap, easy to make and easy to dose. You can work your way up slowly.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lightfoot, thank you.

Nefferdun,,,,,thank you so much for this info......I will order the 50mg tablets next time from the pharmacy you posted.

In the meantime I have received my order of LDN 2mg capsules that my LLMD ordered......i guess these have fillers in them, unfortunately......do you think I can dissolve the contents in water and start with a lower dose? Any suggestions as to the best way to do this?

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
cocowyo
LymeNet Contributor
Member # 36286

Icon 1 posted      Profile for cocowyo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I can't remember the dose I started on, but I had to stop after a few weeks because it made my depression worse.

--------------------
Clinical dx/muscle tests
+ CBS upregulation, parasites, babs
- bart, KPU, yeast, mold

Blood tests
MCTD (autoimmune): +RNP
MTHFR - homozygous C677T
CD57 - 192

Diet - modified paleo

Posts: 125 | From Rocky Mountains, USA | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
cocowyo, LDN is usually good for depression because it increased endorphins. That is strange you got more depressed. I think with lyme, it triggers the immune system to go after the critters hiding in the woodwork so we feel worse and even get old symptoms back.

cocowyo, if you have CBS, the meat in the paleo diet will cause you to make too much ammonia. The molecules needed to get rid of the excess ammonia will be all used up. These molecules (BH4) are needed to generate dopamine and serotonin, Of course that will make you feel depressed. You need to get on a vegan diet and detox the ammonia out with yucca and charcoal ( at night).

JJ29 it is very easy to dilute your capsules. Just open them up and pour them into a small cup or dish. Then mix with a certain amount of water. For instance if you have 3 mg capsules, put 3 of them into a bowl and add 9 droppers full of water. Mix it well. Each dropper will be 1 mg.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nefferdun, thank you so much for your patience and explanation...... unfortunately, my lyme brain is still confused about this.

If I have 2mg capsules and want to dilute one capsule in water (distilled) so I can start using 1mg dose of LDN, can I use the ratio 1 caps to 2 parts (i.e 2oz) water and just drink one oz of the mixture without using the 1ml dropper etc?

cocowyo, so sorry to hear that LDN did not work for you......I think nefferdun's explanation about what could have happened is very interesting.......I did read somewhere that people who are on a gluten/ sugar free/ and mostly vegan diet do better with LDN.

Also, could you have been reacting to the fillers in your LDN? I read that results/side effects with LDN could vary depending on the fillers used by the pharmacy filling your LDN prescription.....this is probably why they have a list of recommended pharmacies on the LDN site.

Posts: 574 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sure, that sounds like it would work. You just want to be sure it is well mixed.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536

Icon 1 posted      Profile for lightfoot     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow, nefferdun ! Thanks for that info....no rx AND a reasonable price. The answer to a strained budget!!

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6951 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536

Icon 1 posted      Profile for lightfoot     Send New Private Message       Edit/Delete Post   Reply With Quote 
Whoops....double post! Have a great day!

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6951 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
JJ29
LymeNet Contributor
Member # 5288

Icon 1 posted      Profile for JJ29     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nefferdun thanks so much for your help!
Posts: 574 | From New Jersey | Registered: Feb 2004  |  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.