I'm wondering if people who have used LDN could offer a summary of their experience in two simple parts:
1) What was your experience with it and would you recommend it to other Lyme sufferers?
2) Do you have any tips for use, i.e., dosage, where to get it compounded, problems you ran into but were able to solve, etc?
Thank you very much.
Posted by rera2528 (Member # 29886) on :
I just started it last night to try to reset my sleeping patterns. We have a local compounding pharmacy that I used, as I have been working with them already and trust them.
I'm on an incredibly low dose. I'll let you know if it seems to work!
Posted by arenele (Member # 29360) on :
For some reason, people who have tried Naltrexone for long time, don't want to brag with the results on this board. Possibly, because the results were not that great.
Posted by dan67 (Member # 20344) on :
I'm wondering if Lyme people get the same results. Maybe not?
Posted by sammy (Member # 13952) on :
For me the results are subtle. I only noticed a difference when I ran out for awhile (>1wk).
I started off taking it at a low dose and quickly worked my way up to the 4.5dose. Only side effects were weird dreams with the dose increases.
My local pharmacy was willing to compound it for me but the cost was way too high. I order mine through Gideon's Pharmacy in NY. I get 3mo filled at a time costing $61 (including shipping). I receive my refills only a couple days after ordering. Their phone number is: (212)575-6868
You can learn more about LDN and find other reliable compounding pharmacies here: http://www.lowdosenaltrexone.org Posted by bcb1200 (Member # 25745) on :
I've been on it for a year since day 1 of treatment. I take 4.5 mg at bedtime. I get it from Gideon's Pharmany in NY.
I believe it helps me greatly. I am 95% most days.
Posted by Neville (Member # 5890) on :
I had a rather bad experience that I have attributed to the LDN. I had begun 3mg LDN along with the antibiotics I had been taking. I did this under LLMD supervision. Suddenly I became very weak and lost a great deal of sensation all over my body but worst in my head, face, neck and extremities. I stopped all treatment for fear of making it worse. Degrees of sensation gradually returned but it took nearly 9 months. My non-Lyme-literate neurologist concluded I had CIDP and would not regain sensation.
I've been away from the board for a long time, wondering if anyone really knows anything about how to best treat this very complicated and certainly poorly understood disease and if I in reality have it, or something else.
Posted by dan67 (Member # 20344) on :
Neville, interesting. Sorry that happened.
I have heard mixed thoughts on taking LDN with antibiotics. Some say not to mix the two, as it can make antibiotic herxes much worse. But maybe that's a good thing? Hmmm...
Posted by Amanda (Member # 14107) on :
1. It made my insomnia much, much worse. It cause my WBC counts to go down even further. Did not help my arthritis or any other symptoms.
2. Started out at 4.5 dose every night. Did fine with it first 3 nights, then began having all kinds of problems. Dropped the dose to 1 mg a night, still had problems. Stopped for 2 weeks, then started again at 0.5 mg every other night. Still had problems.
Most compounding pharmacies can make it for you.
LDN definitively not for me.
Dr. H from NY say that about 50% of their patients got a benefit from it. The rest got nothing or had a hard time on it.
Posted by dan67 (Member # 20344) on :
Thanks Amanda. Interesting. Wonder if the "hard time" is a herx or just side effects?
Posted by raw vegan runner (Member # 30432) on :
I have been on LDN since December 2010. My Dr started me at 1.5mg and slowly increased from there.
I was ready to die before it kicked in. I was so sick, reacting to abx and having to go off them, etc. I had switched to using only herbal protocols by March.
Somewhere around mid March, I started feeling better. That was at 3mg. I continued with my herbal supps. and we upped the LDN to 4mg. Within 2 weeks I felt great. I have ever since.
I went from not being able to walk to the kitchen to feed my kids, back to running 50 miles a week. I am not 100% but I would say I am 75-80% most days.
It does mess with your sleep, and I am willing to deal with that. It also has worked SO well with my immune system that my food 'sensitivities' have turned into full bown allergies, requiring me to be super careful with my diet...which is a small inconvenience when I think how much better I feel.
Do I think I am cured? No. However, I do believe the LDN has made my immune system work in a way it simply could not before. I am still using Lyme herbs, dealing with Candida via garlic, etc, and taking immune boosting supplements. The difference is now I do not have to take them by the fistfiull, but rather a few each day. Normal people doses.
In my research on this, I did read it only helps about 50% of those with Lyme, though I never could find out why. I was willing to take that chance, as was my Dr. I am also lucky that my town pharmacy has a compounding pharmacist, who is very familiar with LDN and its uses.
There are no commonly known side effects to LDN aside from sleep disturbances, which was another bonus for me as I react to everything. The *effects* I noticed beyond my sleep being disrupted were merely my immune system kicking in after years of saying *heck no* and not working.
I have had dental work done, gotten some work on a tattoo done, and dealt with some significant stress AND done a trail race...any of which previously would have knocked me out for weeks. I did them all in a 2 week span of time. I am convinced if it were not for the LDN I would still be suffering.
You could not pry this Rx from my cold dead hand at this point.
I think this is one of those drugs that either works or it doesn't. There is no *sorta* with it. I don't know if the fact I had been focusing on my immune system so much as of late over focusing on the Lyme/CO's per se helped my case...I just know that for me it worked and in the past 5 years of active treatment, it is the only thing that has made me feel THIS much better.
Posted by dan67 (Member # 20344) on :
Vegan runner, thanks for the info. Wow, that's really interesting about your food allergies getting worse. Some have said LDN is only "palliative" meaning it doesn't help kill bacteria, just makes you feel better, but your allergies worsening seems like true immune ramping up, and LDN even helps people with Hepatitis, AIDS, etc., so it seems like it really does boost the immune. I'm going to try it.
Posted by TerryK (Member # 8552) on :
You should search the archives. Quite a few ppl have posted their experience with it.
From a previous post of mine in October 2009 _________________________________________________ I finally had to give up after 3 months due to terrible insomnia. My insomnia got progressively worse. I slept pretty well the first week or two but by the end of the 3 months I was getting about 3 hours sleep a night. Before I took it I was getting about 6-6 1/2. Not great but a lot better than 3.
I've been off LDN for a little over a month and I am not back up to my previous level of sleep. I manage to get about an average of 5 hours a night now. Still far from enough but better than 3.
I did consider daytime dosing but decided it wouldn't have the desirable effect and so just stopped. I really needed to get off ASAP and get some sleep! Can't heal without it.
I got the impression in Dr. S's book that LDN to boost the immune system was only needed temporarily, not forever.
My immune system seemed to take a big hit with IM ceftriaxone and LDN did seem to stop the constant colds and flu that I was getting.
Terry _____________________________________________
My sleep hours were shifted to a later sleep time and I still cannot get them moved back to where they were. A real hassle.
In addition, my female hormones or dopamine or something was really messed up for about a year. I had difficulty similar to impotence in a male but I'm a female. That resolved after about a year.
Terry
Posted by raw vegan runner (Member # 30432) on :
I had insomnia before starting the LDN, it did get worse for a while, and now is pretty much the same as it was before. Some nights I sleep, some nights I don't.
I also have Hashimoto's, and it seems to be affecting that as well. I have had to change my doseage of Armour to reflect that.
I truy feel that for me, I never would have gotten better on abx. alone. The abx themseves were making me SO toxic that despite diligent detox I was simply in a spiral downward that I couldn't stop. I knew my immune system was not functioning and again, for me, that was part of my problem. I could take all the abx in the world but without my own immune system there to pick up the pieces after and do its job...I knew I would never recover.
Since Lyme hits everyone differently, there is no way of knowing if this is the right drug for *you*. You can only try it and see. There is MUCH success with other autoimmune based conditions, which is what lead me to try it in the first pace. I have always had autoimmune *stuff* and whether the Lyme triggered it or the AI made me more succeptable to Lyme/CO's...who knows.
It worked for me and I am so grateful for it. I will say that I firmly believe that you should start at a very low dose and work up to a higher dose over several months.
I also have read that you DO need to be on it indefinitely...that it does the job to promt your immune system to do its job and if it isn't there...you go back your old baseline. I can deal with that. I would rather be on this indefinitely than the hundreds of dollars worth of abx and supplements I was on every month.
Also, my insurance does not cover this. I have BCBS. I pay out of pocket...$35/mo.
Posted by dan67 (Member # 20344) on :
I've read you actually CAN take it in the morning. Would that alleviate the insomnia?
Posted by raw vegan runner (Member # 30432) on :
Here is the info on why to take LDN at night from the *official* LDN website:
"LDN boosts the immune system, activating the body's own natural defenses. Up to the present time, the question of "What controls the immune system?" has not been present in the curricula of medical colleges and the issue has not formed a part of the received wisdom of practicing physicians. Nonetheless, a body of research over the past two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system, and recognition of the facts is growing.
Witness these statements from a review article of medical progress in the November 13, 2003 issue of the prestigious New England Journal of Medicine: "Opioid-Induced Immune Modulation: .... Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected.1,2 Bone marrow progenitor cells, macrophages, natural killer cells, immature thymocytes and T cells, and B cells are all involved. The relatively recent identification of opioid-related receptors on immune cells makes it even more likely that opioids have direct effects on the immune system.3"
The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days." http://www.lowdosenaltrexone.org Posted by raw vegan runner (Member # 30432) on :
The other thing is some people can not and should not go above 3mg per day. This is why it is better to titrate up as opposed to jumping right in at 4.5mg. That way you know when you feel better. I gave each dose a month before I increased to be sure I needed more. 4mg is perfect for *me* but may not be right for others.
Posted by CountryMouse (Member # 32073) on :
There is some controversy between docs/websites as to whether all parts of LDN's action boosts the immune system overall or just regulates it. I myself think of it as a regulator, it ups the immune response if that is what is needed and lowers it if it is overactive. But I am not a doc or researcher other than my own! Either way, I must agree with RVR's post - no one will ever pull it out of my hands EVER. I lived with thyroid and Crohns issues for decades and this stuff put both to bed in 6 weeks. I mix it myself from 50mg tabs and take 4.5ml of the liquid each night. I take it right before bed so it doesn't affect my sleep. I get it from outside the country because none of my current docs will prescribe it.
If a person has an undiagnosed case of thyroid disease, or hypothyroid disease being treated with medicine, be aware that the change in the thyroid can be very quick on LDN. It can cause a hypo thyroid to go "normal" and if you keep taking meds then you will go hyperthyroid and have problems like hair loss and insomnia. So you need to watch that, fyi.
Posted by mookie333 (Member # 26021) on :
I am also on LDN and I have it compounded from a pharmacy out of state and my physican-not LLMD, but environmental/allergy doc prescribed this for me.
It has been about 9months for me on this and I take 4.5mg. It did take a while for me to get on this dose. I do wake up once a night briefly around 3 am. But am able to fall back asleep.
My immune system is so low,,I have done im gamma globulin and tried other therapies...low white count etc. and these counts have not improved at all. But the fact is this, I am not getting sick.
So for that reason, I continue taking LDN and never plan on stopping it. My non-LLMD, allergy doc is well and he takes it every evening as well, he thinks it is one of the most important meds we should take.
It did initially help me decrease my T3 needs. But now all of a sudden, I am increasing my dose...so who knows about that issue.
Mookie
Posted by raw vegan runner (Member # 30432) on :
Mookie, I had to change my thyroid med. dose a few times since I have been on LDN...went up, then down...I figure its just my body sorting things out. I am still doing better than I have been in YEARS and I am 6 months in to taking the LDN...back to running, living my life, and I have almost NO Lyme symptoms whatsoever. This drug is a miracle!
Posted by Bugg (Member # 8095) on :
Can those who say it makes them feel better go into more detail regarding the specific symptoms it seems to help? Also, I think I have an overactive immune system (some sort of post-lyme autoimmune issue) and I'm wondering if LDN could help with that...I seem to feel better on higher doses of Vitamin D which is a well-known immune system regulator....Do any of you who respond well to LDN also feel better on higher doses of Vitamin D? Thanks
Posted by CountryMouse (Member # 32073) on :
Yes on the vitamin D. I take 5000 mcg nearly every day when I can't be in the sun, which unfortunately is all the time right now while on ABs. I definitely feel it (I get down in the dumps) when my D is low.
I also don't get sick on LDN, meaning I don't pick up viruses like I used to. I have more energy due to the regulation of my hypothyroid. I had hair loss with my hypo which has resolved itself (I also take biotin for my hair). I feel more "up" in spirit, I am able to handle stress easier. My Crohns resolved which stopped my 6-8 BMs a day which I consider a complete miracle after being on Imuran, steroids, etc.
Fatigue initially got better but now on ABs for Lyme and I am more tired again, but hard to count that as a negative towards LDN. Oh and with my thyroid my large goiter shrank down to nothing (Hashimoto's thyroid). I also have primary sclerosing cholangitis which is a liver problem, however on LDN my liver enzyme levels are now down to the low side of normal when they told me 2 years ago that there was no cure except for a liver transplant!! So there ya go...again, I'll never be without my miracle in a bottle - LDN!!