Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I've tried it twice now and the pain just becomes too incapacitating. I am on a very low dose only 1.5, but can't seem to tolerate it. Very disappointing as when I first took it I got significant relief over night but then severe pain a few days later.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Um, sorry for this question... I'm sure it's a dumb one, but what is LDN? And it helps with pain?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
No such thing as a dumb question. I had no idea what LDN was either until my LLNP recommended it. Low dose naltrexone
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Ellen,
Sorry to hear this.
We started nearly the same day, a couple weeks ago. I did make it up to the 3.0 mg second tier and was due to increase to full load in a couple days.
I had some pretty harsh symptoms overnight but, after re-reading the book, it seems I may have increased too soon. Some need to stick to a very dose at just every 3 days for awhile.
I was ready to toss in the towel but will talk to my ND about it, first. The successes with this look so good. I'll just back it down now and see. If I find out anything specific that may help, I'll let you know.
Still, you might now want to look at MEDICAL MUSHROOMS for their action of immune support. -
[ 07-04-2013, 06:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some LLMDs who incorporate LDN in treatment for those with lyme, et.al., say that about half who exlore this find benefit from it. From my previous readings of posts, I know that those taking this have a broad range of reports.
Anyone looking to study this: There have been many threads here at LymeNet on this topic. Search archives.
2012 Integrative Healthcare Symposium - February 9 to 11, 2012
Treating the Pain of Lyme Disease and Adopting Lifestyle Change as Therapy
Excerpt:
. . . As for integrative pain therapies, Dr. H. said that low-dose naltrexone (ReVia, Duramed) has proved effective in Crohn�s disease, multiple sclerosis, and fibromyalgia.
In his open-label study of 500 patients with Lyme disease and MCIDS, approximately 75% of patients experienced less fatigue, myalgia, and arthralgia when the naltrexone dose was titrated to 4.5 mg at bedtime. . . .
Many more threads, here, in the Lyme Net Archives. Search "LDN" in the subject line of medical. Then search in "General" formum and on web links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LDN (low-dose naltrexone) is designed for immune modulation. If that does not work for some, explore the immune support of MUSHROOMS. A LL ND (naturopathic doctor) is best to advise.
MEDICINAL MUSHROOMS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I'm sorry it increased your pain. It is actually supposed to provide pain relief because of the massive endorphins it stimulates.
The first few times I tried it, I had to quit too. I had frequent urination so horrible it was driving me nuts. I got up every hour all night.
Then I found out I have protomyxzoa and apparently the LDN was causing a herx. PR does cause urinary discomfort, among many other symptoms.
I started treatment for PR and then tried the LDN again about a month later. I was fine with it but I worked up slowly beginning with 0.5 mg. I stayed at 3 mg for a year and recently raised it to 4 mg.
PR also causes pain in the joints, muscles and bones. It could be the LDN is stimulating your immune system to attack an infection, such as PR (but it could be something else) and that is the reason you get pain.
In fact that is the most logical explanation as there is nothing about it that causes pain.
-------------------- 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 |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am bumping this thread because I started LDN last night. I didn't realize that 3mg was a high dose to start with. I went to sleep around 10 pm and awoke at 12:30 a.m. and was up for several hours with HORRIBLE tinnitus and electrical buzzing sensations in my head .
I also had some pretty intense Ondamed treatment yesterday. I probably should have waited to try the LDN. I just got so excited when it came in the mail and couldn't wait to try it after what I had read about how great it can be.
Now I am afraid to start again - as I can't afford to have nights like this. I depend on my sleep to rejuvenate me. I will get the book and read the links. It is discouraging though... as I hoped this might be the answer for me.
If the capsules are 3 mg size, would it make sense to take only every 3 nights? Or to divide up and try to take half of that amount? Also, the information I have read says it will not work unless taken at night. Does the book say otherwise?
Thanks for your help!
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
That is very high to start with. I started with half the dose and was told to remain there for several weeks before going up.
Do you know what filler was used?
Also I was told if it interrupted sleep I could try taking it in the morning.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
It is from Skip's Compounding Pharmacy. I am not sure what they use for fillers but my LLMD told me this is the best source. Thanks for the site. I will look at it.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Yes, Skips only uses avicel. That is where mine was from as well. Look at the site Iposted, they have a ton of helpful info.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
posted
Exactly my reaction too Ellen.. was such a disappointment for me. Not only did my pain go up, even at the tiniest dose I felt so so sedated even the following day that continuing it for more than a day or two was incapacitating.
Posts: 394 | From Southeast | Registered: Oct 2012
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
It is SO good for me! Makes a big difference with not catching colds and my myriad of skin rashes.
I started at 3mg also right off the bat.
Don't be dissapointed with it-maybe the dose is too much for you currently.
If it were me, I would "eyeball" half a capsule into an empty gelatin capsule. (unless you have a very good scale..)
Try 1.5 mg?
It took about two weeks for me to notice benefits.
Now it is my favorite favorite med. I will happily take it for the rest of my life if needed.
Also, do you take it with anything at the same time? Perhaps the release of it, or the interaction is causing this?
Maybe try 1.5mg by itself?
Also, I did get vivid dreaming from it. They went away after a month. Some folks with lyme take LDN in the morning to avoid the dreams.
Good luck Hugs
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
That is wonderful that LDN has helped you so much Greta!! I was so excited when I read about all the incredible things it can do for some people. It sounds like it has helped to turn the corner for you.
I did not take anything else with or near it, but I spoke to the person who does my Ondamed treatments and she said it could have been a 'healing crisis' from my session. We were very focused on that part of my body - especially the ears, jaw and skull. She said we will go slower next time.
Now, I will know better than trying anything new on the same day as a treatment also. Perhaps I will try LDN at half the dose next week after I am feeling a little better. Last night was really bad. Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I started exactly as the titration doses indicated. Very, very low the first week, a little more the second, increased by still just a touch on the 3rd and finally reached full dose by end of week 3. And it was sheer torture.
I also could not tolerate it, at all. For 3 weeks, I carefully worked up to the correct low dose but it was 3 weeks of torture and it took weeks to come back to my baseline.
now, for me, this issue might have been that it was dissolved in almond oil and I did drops. the cost of the capsules in the starting different doses was too high. I had to do drops. But it made my usual mouth blisters explode.
Pain in body was worse than in years. Vertigo, etc. was also so much worse as was the bone level fatigue.
I don't think it was just that the drops were so different -- they might have affected my mouth ulcers more than a capsule would have but the other effects had to have been due to the LDN itself. Almond oil was the only other thing in it. And I'm fine with almonds.
I was very disappointed but it's just not for me. I tried for 3 weeks and, by now, I've learned that I don't need to redo that experience. It's very clear - for me. For my body.
Now, for those doing well, that's great. Many do.
But, for those who don't, I suggest not pushing beyond a reasonable uncomfortable adjustment. This seems to be really good for some, a rough (but manageable) start for others and then better
to just not going to work at all for some.
You Gotta Know When to Fold 'Em -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Yes Keebler I agree. I asked my LLNP just this week if perhaps I should try it again and she said definitely not.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ellen,
Hope you are feeling better.
Just wanted to add that the drops I did were from the compounding pharmacy. I did not try to mix and match stuff in my kitchen meth lab (that is a joke, I hope it comes across as a very funny visual joke if you know just how "organic" I am & what my kitchen looks like with glass jars of beans and rice of all colors).
I called them a couple times about this but they said they've never had anyone react as I did.
My (regular) ND also said she's never heard of that reaction but needed to know.
Sure, not a lot of people are doing LDN, but they've had several and it is rather disheartening to hear "no, never heard of those kinds of reactions . . . most do better."
I know it's also likely very disappointing as those who do better do SO much better, it seems. Just know that there is a percentage that goes the other way.
I sometimes wonder, "okay, then, just WHAT exactly went wrong in my case? For others? Why can't some do it while others shine?" And I just had to let go of that question with a "just 'cause." Were I do have the luxury of a LL doctor, they might know so do ask your LLNP.
Even revisiting this, I become very sad, remembering how very full of hope and positivity I was about this. I had the book, I did the homework and I was ready to rock and roll. Instead, I rolled off a blipping cliff with no stairway back up.
Now, it may take a little while to get back to your baseline so just take it easy.
As for the absolutely requirement for hope when one method's launch fails, just know that there are approaches.
I do find that Berberine is very helpful to lessen pain. It helps in other ways, too, although certainly not going to be the winning ticket, I think it's just not enough.
For me (with no LL doctor, few options), rife seems my best hope now - just gotta really settle down and do it (not so easy for me, though).
Just know that there are other doors, other avenues. You'll get there. -
[ 06-30-2014, 04:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I couldn't tolerate LDN either. It made me feel high as a kite (not in a good way) and I couldn't feel grounded. My decision making was effected and I started hallucinating. Not good.
I started very low with LDN from a compounding pharmacy.
I had to stop it because I felt like a danger to myself.
It was NOT the miracle I hoped for.
I have to say it made me not care if I had pain, I was so high.
Long-term antibiotics eventually got the pain to go down.
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic