Has anyone used low dose naltrexone?

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Has anyone used low dose naltrexone?

Postby ellie6 » Tue Jun 04, 2013 8:45 pm

My doctor has prescribed low dose naltrexone for me to try for my back pain. I'm a little leary after everything I have read. Does anyone have any experience with it?
Onset of bilateral bursitis 11/10 following tick bite , began Lyme treatment January 2011-Jan 2012, with various antibiotics, zithromax, bactrim, bicillin,'doxy, rifampin, augmentin. Diagnosed with ankylosing spondylitis , or psoriatic arthritis 2013. Not currently on any meds
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Re: Has anyone used low dose naltrexone?

Postby Maz » Tue Jun 04, 2013 10:28 pm

ellie6 wrote:My doctor has prescribed low dose naltrexone for me to try for my back pain. I'm a little leary after everything I have read. Does anyone have any experience with it?


Hi Ellie,

A few folks here have or are using LDN as an adjunct to their antibiotic therapy. There's some info on the LDN ProBoards about candida and LDN you might be interested to read:

http://ldn.proboards.com/index.cgi?boar ... thread=303

The following video presentation, by Dr. Burt Berkson is pretty interesting in light of the fact that the RA patient he describes is on LDN, but also is put on minocycline 100mg QD (later switched to the macrolide abx, clarithromycin) and IV ALA.

http://www.youtube.com/watch?v=nttilGKpJvU

I tried LDN a few years ago and stayed on it for about 8 months, gradually working up my dose from 2mg a day. I saw some improvement in symptoms, but ultimately had to stop due to night tremors. Upon talking with my new LLMD, it seems that this can occur as a side-effect for some Lyme patients. I haven't ruled it out as a future option to re-try (probably at a lower dose than the 4.5mg I worked up to, which was clearly too much for me), but for now don't seem to need anything else.

I think the folks that may be able to provide more expert lay insight on LDN would be found at the LDN ProBoards, or other similar LDN support sites, but hopefully others here will chime in and share their experiences. Some folks have really good results with it, but mostly folks here are using it in addition to their AP, as a supportive adjunct (as per video above).
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Re: Has anyone used low dose naltrexone?

Postby cavalier » Fri Jun 07, 2013 12:43 am

I've been on 4.5 mg's for a year now - it helps but it isn't enough by itself to put me into remission although it did lower my #'s which consistently were higher before that. It is a good immune modulator one to consider in the arsenal that has good history of usage. It has added some relief & this I do credit to putting my raynauds at bay completely so it did help reverse & slow some things - but I am also aware of my Scleroderma continuing as well but it has continued with AP & other adjuncts too but of I also feel strongly of course that I would be worse off without LDN as I have run out once over a weekend & by the time I got the LDN again it was late on Tues - I really noticed a nose dive for being even more tired & hurting and I get sick a lot less than I was pre LDN as well.

I did take 9.0 mg's with no issues as well for a time but I then felt I no longer needed quite that much so why waste it? I still get it filled for two a day it was 4.5 at bedtime & then during the day - as the cost is the same.
And it's nice if I ever feel I have the need to go back up - which I should consider when I am in a flare doing as I type this as it did seem to keep that from happening for me more or it just was a time when I didn't get the flares who knows another trial would tell me that.

Point is EVERY one of us is different in how we handle med's & the affects. For me I got a Lupus marker appear when I was on Mino & my feet went black after about 5 months on it. Where many other patients do just fine on mino - go figure.

I believe LDN helps in some cases for others it could do more others cant take it - some real herxing occurred for me & not all but some may feel true side affects & others maybe getting a herx & not realize it.
I do know I am worse without LDN as I have tried once on purpose to stop & once cause I ran out - I didn't expect to feel any differences but I did.
I know of no serious side affects although some maybe uncomfortable.
I also have Lyme but I have SD & not RA or something else. Again where we each are at in our disease process & our body makes us each unique like snowflakes. :D

Oh most folks titrate up slowly - I was in bad shape with my SD & already on AP so I took a jump to 4.5 right away - my doc also felt it was worth not waiting other than herxing which is good I tolerated it just fine I was awake more for the 1st couple of nites but I would go right back to sleep - but off & on but immed. go back - I was also aware of the circulation being increased to my feet which is why I woke up mostly but I felt better more well & that feeling felt good. I did have some dreams I remembered when I woke up - I felt I slept deeper better which I really needed as I was in pain & lacking sleep for some time.
Best - Jill SD Lyme CPn & Candida poss. Bartonella
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Re: Has anyone used low dose naltrexone?

Postby vera » Sat Jun 08, 2013 9:21 pm

Hi Ellie,

I have been on LDN since 2009. Have experimented going off for a few days and got very sick, so I know it helps boost my immune system. Everyone is different, but this is my experience on LDN. I noticed an improvement in mood, pain and energy after the first dose. With AS, my symptoms are greatly improved. There is some disagreement whether a person on a biologic will receive any benefit from LDN, but as one who is on Enbrel, it definitely helps me. In fact, that's one of the reasons I want to continue on LDN so that my immune system stays as strong as possible while on the biologic.

LDN is an extremely important part of my regime. Unfortunately, the LDN alone is not enough for me with PsA and AS. LDN along with the minocycline, dietary changes, supplements, some meds, have all worked together to give me back more mobility. I have been able to gradually reduce the Enbrel from every 7 days to every 9 days - and I hope to get off of it completely one day.

Best to you,
Lori
Psoriatic Arthritis/Fibromyalgia 10 years
LDN (2/2009)
Minocin 200 mg/every other day (7/2010)
Serrapeptase/fish oil/various supplements
Enbrel
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Re: Has anyone used low dose naltrexone?

Postby ellie6 » Mon Jun 10, 2013 5:27 pm

Thanks for the replies. I'm wondering..it says no narcotic type of meds can be used while on LDN and if you nneded surgery/anesthesia there is a waiting period. What happens in the case of an emergency? What if you were unconscious say and unable to tell anyone you are on this med??
Onset of bilateral bursitis 11/10 following tick bite , began Lyme treatment January 2011-Jan 2012, with various antibiotics, zithromax, bactrim, bicillin,'doxy, rifampin, augmentin. Diagnosed with ankylosing spondylitis , or psoriatic arthritis 2013. Not currently on any meds
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Re: Has anyone used low dose naltrexone?

Postby lynnie_sydney » Mon Jun 10, 2013 5:54 pm

Ellie - if you go to the LDN site, there is alot of information there
http://www.lowdosenaltrexone.org
Also, if you look at the list of compounding pharmacies, Skip's Pharmacy is listed. You can email a question to the pharamacist (Skip) and he will respond.
Be well! Lynnie

Palindromic RA 25 yrs (Chronic Lyme, CPn,)
Mino 2003-2007 100mg MWF
Now: diet to heal gut - no gluten, dairy, sulphites, low salicylates
new abx regime from Sept 2014 : MWF a.m. 1/2 Augmentin Duo (Amoxycillin + Pot. Clavulanate), Cefaclor (1/4 375mg) + Fungilin 5mg (amphotecerin)
p.m. 250mg Klacid
supps: 600mg N-AC BID, CoQ10, B-Complex, B-12 sub-lingual, probiotic, 3mg Melatonin + 5-HTP to promote sleep, Krill Oil + Lithium Orotate (natural mineral)
2007 testimonial: http://www.roadback.org/index.cfm/fusea ... d/490.html
personal progress:
viewtopic.php?f=3&t=371
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Re: Has anyone used low dose naltrexone?

Postby cavalier » Mon Jun 10, 2013 6:36 pm

I have a SS dog ID tag with my medical info on it - contacts & medications I take including LDN & my blood type for this reason the info is engraved on both sides. It isn't just for LDN that this is important for those precious minutes for blood type etc can matter. I also have listed on there I have Lyme & systemic Scleroderma. It cost me less than 8 bucks with the chain with a lifetime warranty from a maker who makes dog tags - they do a great job. I found them on-line if you do a search you will find them by plugging in medical ID dog tags.
BY the way you can take some pain meds with LDN but I feel this is best answered by a pharmacist for you.
Some will only render the LDN useless it just depends on which med & their interaction.
Skip will know!

Jill SD Lyme CPn Candida & Poss. Bart.
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Re: Has anyone used low dose naltrexone?

Postby cavalier » Mon Jun 10, 2013 11:15 pm

This following article better explains why I take LDN, as I previously said my #'s for SD lowered after I started taking LDN & I was actually in remission according to my blood tests for a while & I felt better too during this time, but later my SD #'s changed to being back but still I feel there is definite help with immune modulation and slowing fibrosis important for me with SD. If all LDN does is these things which it does do for me - then it is well worthwhile. Other articles suggest this is also antifibrotic as is also reported, Niacin & Taurine.

http://www.elaine-moore.com/Articles/Lo ... fault.aspx
LDN Dosage
LDN is generally used in doses ranging from 3-10 mg daily depending on body weight, the patient’s condition, and individual response. For instance, patients with multiple sclerosis (MS) and muscle spasticity generally do better on a 3 mg dose than the standard 4.5 mg dose recommended for neurodegenerative disorders.
The most common side effects of LDN are sleep disturbances and vivid dreams. These effects can be avoided by taking LDN in the morning. Although early reports suggested that LDN needed to be taken at night, studies have shown that LDN can be taken at any time. It is not necessary to take it at night.
The Effects of LDN
The Pennsylvania State University researcher, Dr. Ian Zagon, Ph.D. has been studying LDN for 25 years and reports that LDN’s most important effect is its ability to increase production of met-5-enkephalin, which he named opioid growth factor (OGF) for its functional properties.

The endogenous opiates are neurotransmitters as well as cytokines, influencing the activities of immune system cells and having distinct biochemical effects (e.g. growth factors, neurotrophic factors, antiviral activity, anti-tumor activity, anti-inflammatory and pro-inflammatory effects).

OGF forms a complex or system when it reacts with the OGF receptor, a receptor found on immune system cells and cancer cells. This system inhibits inflammation and cancer cell growth. This system also restores homeostasis, a natural process in which the body’s cells and systems work together to maintain health. Thus, LDN helps the body heal itself. In certain cancers, OGF is used in place of LDN.

Dr. Jau-Shyong (John) Hong of the National Institute of Environmental Health Sciences (NIEHS) discovered that LDN also prevents microglial activation, the main cause of chronic brain inflammation. In addition, LDN has antioxidant properties that reduce the effects of free radicals throughout the body, thereby reducing chronic inflammation.
LDN also causes changes that reduce neuronal degeneration. As a consequence, LDN offers protection against neurodegenerative diseases, such as Parkinson’s disease and MS. Chronic inflammation contributes to the persistence of autoimmune disorders and is an underlying cause of many conditions, including Crohn’s disease.

By increasing endorphins, which are immunomodulators, LDN improves immune function. Immunomodulators stimulate antibody production in patients [b]with immunodeficiency (HIV infection) and [b]reduce antibody production in patients with excessive antibody production (autoimmune disorders,[/b] herpes, [b]Lyme disease[/b]).

The Common Link

Doctors Zagon and Hong and other experts in the field reported that diseases which respond favorably to LDN are diseases that benefit from effects on cell proliferation (cancer inhibition) or from a reduction in inflammation (neurodegenerative and autoimmune disorders, fibromyalgia) or that benefit from the restoration of homeostasis and immunomodulation (virtually all disorders, including infectious diseases).
Clinical Trials

To date, LDN has been studied or is undergoing clinical trials for pancreatic and head and neck cancers, Crohn’s disease, HIV/AIDS, neuroblastoma, melanoma, autism, Parkinson’s disease, lymphoma, multiple sclerosis and fibro
myalgia. There are also many anecdotal reports that suggest LDN offers benefits in a wide range of other autoimmune and neurodegenerative diseases and malignancies. Clinical trials are needed to confirm the anecdotal reports

I list LDN as a very strong adjunct one that is a important part of the arsenal - I would not fight SD/Lyme with only one thing but instead a handful of weapons & this is one of them. I feel this is true of RA & most Rheumatic diseases.
Jill SD Lyme CPn Candida & poss Bart.
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Re: Has anyone used low dose naltrexone?

Postby vera » Tue Jun 11, 2013 7:33 am

Cavalier,

Thank you for posting this most interesting and informative article. I researched LDN in 2009 when I started taking it, but learned much from this information that I didn't know before. Thank you! :D

Lori
Psoriatic Arthritis/Fibromyalgia 10 years
LDN (2/2009)
Minocin 200 mg/every other day (7/2010)
Serrapeptase/fish oil/various supplements
Enbrel
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Re: Has anyone used low dose naltrexone?

Postby cavalier » Tue Jun 11, 2013 3:25 pm

You are welcome Lori - I just felt LDN's help is often not fully appreciated. While my immune system is horribly under attack with both Lyme & Scleroderma causing disarray - LDN has a role & a big part in being supportive.

Jill SD Lyme CPn Candida & poss. Bart.
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