I just saw my local LLMD. I asked her about this and she said she thought it would be a good idea.
Wanted to gather some input.
Thanks! Tammy
[ 04-26-2012, 08:40 PM: Message edited by: Tammy N. ]
Posted by Tammy N. (Member # 26835) on :
up
Posted by Dekrator48 (Member # 18239) on :
I recently tried LDN for 4 months.
I did not notice any real benefit.
When I started it, I actually slept longer than usual, then that wore off.
Posted by nefferdun (Member # 20157) on :
I had to quit using it because I was having urinary problems. I could not figure out why but believe it was activating an infection that was dormant. I felt so much calmer on it and I could sleep better. I needed less thyroid medication.
I give it to my dog for cancer. After about five weeks on LDN (3 weeks full strength), the vet did a second ultrasound which showed the tumor had shrunk slightly and there was less fluid around it. He told us the dog does not need to come back again for six months. The dog is 15 years old.
My husband takes it mainly for prevention but it has helped pain he had in his shoulder. When a virus swept through the family he was the only one who did not get sick.
My son takes it for type one diabetes to preserve his beta cell function. So far so good but only time will tell. I don't want to give up on it for myself.. It is an amazing drug.
Posted by baileypup (Member # 22824) on :
It's not magic, and it takes a while before you feel any result, but I feel it definitely boosts and regulates the immune system.
I've been on it going on two years, and now that my pathogen load is down, my immune system has really kicked in. I have tested as high as 227 on my CD57.
Posted by jwall (Member # 22999) on :
if it boosts the immune system, could this possibly cause an overactive immune system?
I am supposed to start this drug, but I have been hesitant because I feel like my body is already attacking itself and if I add an immune boosting drug, couldn't that cause it to do more harm than good?
My local LLMD prescribed it for me and my 5 yr old son. I worry about giving my 5 yr old a drug that alters the brain. My LLMD that is out of state said no for me and he is one of the top Lyme docs. I never asked why at the time. I had only heard great things, but his answer was a simple "no."
Maybe I am confused on how the drug actually works.
Posted by seibertneurolyme (Member # 6416) on :
I would defintiely suggest starting at a low dose if you try this med.
A LLMD neuro wanted hubby to take the standard dose of 4.5 mg We started at half that dose. Still not sure if it was that med or something else that caused hubby to crash back around Christmas 2010 and end up in the hospital. This was before he started his aggressive babs treatment. Was still on IV rocephin and IV zithromax and tindamax I think.
Anyway the first 2 weeks at half dose he felt weird -- trouble sleeping and mostly head symptoms I think.
Tried increasing the dose and within a week he crashed.
Recently tried this med again at 2.5 mg He was off all meds for a month before adding the LDN. Could not see any improvements in WBC and started having trouble sleeping again. Tickborne symptoms especially babs symptoms were already starting to come back before adding this med. Then after about 2 weeks on the LDN when hubby did the antibiotic/antimalarial challenge and started running fevers again I stopped the LDN.
His LLMD agrees that at least for now he should not go back on this med.
We may eventually try it again at some point in the future, but for now I am going to try again to find a herbal adaptogen that will help hubby's immune function. He has tried rhodiola, ashwagandha and Siberian ginseng (eleuthero) in the past. Has also tried transfer factor. May try beta glucans again first.
I think it depends a lot on what mix of infections a person has as to whether this med will help or not.
Bea Seibert
Posted by baileypup (Member # 22824) on :
Just to add - I didn't feel fabulous when first on LDN. In fact, at the beginning I almost didn't stick with it because of the initial insomnia. I just felt like I was doing something good for my body, even though the results were not there.
LDN should be titrated. My doc started me on 1 mg. for the first month, 2.5 mg. for the second and then up to 4 mg. Some go as high as 4.5 mg.
Posted by triathlongal (Member # 31684) on :
I heard/read that it can cause yeast issues. I do not remember the source of that info. but you might want to look into that.
Posted by nefferdun (Member # 20157) on :
It is true you should start low and work your way up to avoid the problems you might have with sleep. You can open your capsules and mix it with the appropriate amount of water to dilute the dose. According to the most current research, 3 mg is the best dose.
It can cause yeast and herpes infections to flair but then they should resolve and get better. I believe it can cause dormant lyme infections to flair too. It is like the immune system finally sees it. That was what was so uncomfortable for me. Even at just 0.5 mg, I had the uncomfortable feeling of needing to urinate all the time. Lyme and bart love the bladder.
It will not cause your body to attack itself. It is used to treat auto immune diseases with tremendous success. It used to be thought that auto immune disease was caused by an overactive immune system.
Now they are realizing auto immune disease is caused by an UNREGULATED immune system. The killer cells are out of control because there are no regulatory cells to direct them to shut off. It is like an army with no top brass so they are attacking everything including themselves. The "intelligence" is missing. LDN boost regulatory cells 300%.
LDN does not have negative impact on the brain - just the opposite. It is used with autistic children to calm them. It helps prevent self harming behaviors. It is even used to help with some brain injuries. It helps stop dementia.
LDN works by boosting endorphins so once you get adjusted to it, it brings a sense of calm and tranquility. The endorphins boost the immune system. When we are under stress our adrenal glands are producing huge amount of cortisol which weakens the immune system. Dopamine levels fall. We feel worse and worse. LDN helps to stop the downward spiral.
Posted by jlcd1 (Member # 18138) on :
it helped me a lot with energy and sleep, but my symptoms did get worse for the first month.
Posted by Tammy N. (Member # 26835) on :
Some really great input here. Thanks so much.
Neff - did your urinary stuff hang around stubbornly or leave? As a child I had a lot of bladder/kidney issues and have often wondered if something is still quietly lingering there.
With anything new, I get a little cautious in my approach. I am going to run this by my Seattle docs also. Although they won't be able to test me for it, I'm curious to know their general thoughts on it.
Are there any downsides anyone is aware of?
Posted by marypart (Member # 27012) on :
Did anyone find that it helped with arthritis?
Posted by nefferdun (Member # 20157) on :
I just started LDN again yesterday. I realized my crazy thyroid decided to switch from underactive to overactive. It has done this before - called silent thyroiditis and is auto immune.
I had a low grade fever for months and was sleeping less and less. Finally I was eating from sun up to sun down and losing weight. Not sleeping hardly at all and ready to collapse.
Yesterday I took a small dose. Maybe just a coincidence but my fever broke for the first time in months. I am eating normally and I slept last night. I am going to stay on LDN this time because I would rather have the bladder discomfort than not be able to sleep at all.
It is very good for arthritis, that is RA. If the arthritis is caused from structural damage, it cannot address that. My husband takes it and the pain in his shoulder that was there for years, is gone.
I think LDN is a miraculous discovery Here is a book about it: The Promise Of Low Dose Naltrexone Therapy: Potential Benefits in Cancer, Autoimmune, Neurological and Infectious Disorders (McFarland Health Topics)
I also read Up the Creed With A Paddle by Boyle. This is a love story about an Irish woman who's husband is diagnosed and suffering with MS. Finally she stumbles upon LDN and convinces her very reluctant husband to try it.
She expresses how doctors are so unwilling to think outside the box and how patients are afraid to have hope, to try something not mainstream. This woman has spent her life trying to spread the word about LDN. Many people are better because of her efforts but there are many who would not listen to her. She said all she can do is give them the information.
I can't tell you how hard it was for me to get my adult son to give LDN a try for his type one diabetes. You would think I was suggesting poison! His girlfriend is as rigid in her thinking as a nun with color crayons - "in the lines"! Yet, it is just fine to go to a party for a night of binge drinking. Crazy.
Posted by Kudzuslipper (Member # 31915) on :
I'm very intrigued by LDN. I just read that book nefferdun.
The one thing that has stopped me asking my llmd about it, is that tramadol is the only thing that helps me at all with pain. And I know you can't take them both.
I would be intrigued if anyone has stopped tramadol or other pain killers before starting LDN, and how bad that was. And how long before the LDN kicks in and helps the pain.