ping: knuckle (LDN)

[dyin_myelin]

I didn't want to hijack the Jason DeSilva thread. I noticed that you are in PA, do you take LDN yourself? I asked my PCP today with study attached and she said to ask my neurologist, she wasn't comfortable scripting off label. I didn't think I would hear back from neuro before holiday weekend but she emailed me back in 1/2 hour: "I do not think this is a valid therapy and I am not comfortable prescribing it." I know that some people take it as an adjuvant therapy to Copaxone, can you also mix with other DMDs, specifically Tecfidera? Thanks.

[knuckle]

Hey Dyin,

I've been on LDN now for about six years and my neuro prescribes it at Neurology Consultants in Paoli. I had to explain it to him and how to prescribe it. That's often the problem. Doctors don't know how to prescribe LDN (which is very simple) because they don't have a pharmaceutical rep telling them how to.

I get very frustrated with this because many doctors and neuros prescribe LDN and the one's that don't seem to be too lazy to learn or more concerned about themselves than you. No problem prescribing Tysabri or chemo however. They're totally fine with that. How many people has Tysabri killed?

I started LDN after 18 infusions of Tysabri, three infusions of Novantrone, two years of Copaxone, and eight of Avonex and Rebif. I've had MS since 1991.

Here's my advice:

Give LDN a try for 6-9 months, especially if you're newly diagnosed, and see how you do. Did you have a relapse/exacerbation? Did you progress at all?

There is a ton of research, science and user experiences supporting the efficacy of LDN for autoimmune diseases, MS, and cancer. 1000s of MS patients have been taking LDN for years but there just hasn't been a big pharma clinical trial because LDN is a cheap generic drug they can't turn into a $50,000 a year treatment.

My opinion...I think Tecfidera (dimethyl fumarate/fumaric acid esters) does the same thing as LDN, regulates Tcell proliferation. Tecfidera does this by correcting a fumaric acid deficiency in the citric acid cycle which restores normal endorphin production in the bloodstream. LDN restores endorphin production by it's mechanism of blockading the Pituitary Gland.

Endorphins, no matter how you get them, sunshine/vitamin D, exercise, spices, sex, are Hormones that regulate immune system function and MS disease progression, male/female, by age, seems correlated to hormonal activity.

It doesn't surprise me that Tecfidera, an "immuno-modulator" has impressive clinical trial efficacy and I think LDN would yield similar results. For this reason, I think taking Tecfidera AND LDN could be redundant, though LDN would better help reduce MS-related fatigue, pain and cognition problems because of it's higher endorphin production. Of course, LDN is less toxic/non-toxic and cheaper than Tecfidera.

dyin myelin, in the final analysis it's your MS and it's ravaging your body, not your neuro's. If you want to try LDN send me an email (in my profile) and I'll get you a doctor referral.

[JerryD]

Hi, dyin myelin. I am from the western suburbs of Philly and I had to 'shop' for a doctor who prescribes LDN. I have been using LDN for about 5 years. You may be able to research this by looking for a local 'compounding' pharmacy. Then, you can talk to the pharmacist and find a doctor who prescribes LDN. That is, if your doctor refuses to work with you. My doctors, except for one doctor, refuse to learn about LDN. But I think it has been working for me. I am not on any other treatment. Good luck

[onlyairfare]

Before lambasting doctors for being lazy and stupid for not prescribing low dose LDN, remember that any drug that is strong enough to work is strong enough to have (potentially) bad side effects. Any drug should be prescribed by a doctor who is familiar with how to use it, how it may interact with other drugs that might be prescribed for the same patient (especially important in MS patients who may be on pain meds that could interact adversely with LDN), and how use of LDN for MS differs from the FDA approved use of naltrexone for other conditions.

Another consideration is that there have recently been some epidemics of serious disease caused by compounding pharmacies that inadvertently produced contaminated product. Since LDN may require a compounding pharmacy (LDN doses for MS are much different that the naltrexone doses used in treating other conditions), you would want to be sure that both your doctor and your dispensing pharmacy are reliable, and familiar with LDN for MS.

Some insurance carriers may not cover a prescription for non-FDA-approved use, meaning you may have to pay cash out of pocket for LDN. Some medical malpractice carriers may not cover a physician prescribing "off label" which means that if you had an adverse reaction as a result, you might have no compensation for your injury.

I think most primary care practitioners will leave prescribing of MS treatments to their neurology colleagues, and some neurologists will be comfortable with "off label use" and some won't. If I were to take LDN, I would want my prescriber to be very familiar with how to use it, and I would call them honest and ethical (not lazy or stupid) if they said "I just don't feel knowledgeable or experienced enough to prescribe this safely for you." Then I would find a doctor who is experienced with prescribing LDN and use a pharmacy s/he recommends.

[Kaitar]

LDN

Just wanted to add a few thoughts.....

Doctor's earn for prescribing/supporting and advertising the DMD's, they do NOT for prescribing LDN (this is a fact, welcome to the good ole USA).

I don't think the doctor's are lazy or stupid. I think they know darn well that no money can be made off of LDN and no insurance company cares to fight with off label practices. This makes them VERY smart, just callous or at best paranoid or selfish.

LDN has been proven to work in every study that has been conducted. There have been ZERO side effects from LDN vs. sugar pill.

LDN at such low doses does NOT interact with any MS DMD's. It may raise your tolerance to pain medication slightly. However since NO doctors bother to offer anything for the pain what does this matter??????

My neurologist doesn't have a problem prescribing it. He did at first, but cared enough to read through all the study information I provided to him and changed his mind. (this is the type of doctor I recommend for everyone to have).

If you want to give it a try order it online, no prescription needed.

I pay for mine out of pocket, it's $26/month.

Good Luck.

[dyin_myelin]

My mother calls all traditional pharmacology "poison." She has spent $300+ to cure my incurable disease with boxes of vitamins and DVDs on a fixed income. When she sent me the LDN link, I was disgusted. Treats HIV, cancer, MS, etc.! The sorts of blanket claims made by charlatans who have no moral compunction about robbing from sick, dying, and desperate people, similar to the claims made for rare earth magnets and radioactive water in the 19th c. Vastly different diseases with different etiologies and mechanisms of attack.

A post on this board caught my eye about LDN causing an unwanted pregnancy, and how LDN is used as a fertility treatment in Europe. I began to research this MScam, since some increased fertility and maybe some very mild opiate action would take the edge off nagging depression at the very least and get mum off my back.

I am an empiricist, an atheist, and also have a degree in psychology. I quote from an article in the British Journal of Neuroscience Nursing: "Inexpensive, well tolerated oral therapy. . .research into this area has been hampered by a lack of interest from the pharmaceutical industry as naltrexone has long since gone off patent and would not be a profitable product." In every randomized, peer-reviewed study I read, the EAE mouse model and human trials, although not as prolific in number as traditional DMDs, have shown efficacious results in "significantly" reducing disease progression, elevating mood, and lowering spasticity. Little to lose, and perhaps lots to gain.

[October22]

My experience w/LDN

When I was first diagnosed, I did TONS of research and stumbled across LDN.
I asked my neuro about it and while she'd heard about it and was willing to let me try it, she didn't know how to prescribe it so it took a few tries to get it right.
I've been on it for a year now. Is it helping? All I know is I get SOLID sleep every night and seem to be holding steady. I'm much more comfortable taking LDN than the toxic chemicals but I'm also afraid not to take the toxic chemicals so I'm also on Copaxone (switching to Aubagio?). Neuro told me you can take LDN with any of the DMTs.
A few notes:
Start with 1.5mg and ramp up to 3 and then 4.5 over a few weeks. (A lot of people stay at 3mgs...) Make sure they write the script as IMMEDIATE RELEASE (ir). Sustained release defeats the purpose. You are supposed to take it between 9pm and Midnight and then be ready to fall asleep because it really is immediate release. I had vivid, weirdo dreams in the beginning but not anymore.
Good luck!

[knuckle]

I've obtained my LDN (4.5mg) now for six years by mail order from Skip's Pharmacy in Boca Raton, FL. I suggest you visit their website.

I pay $66 for 100 capsules, cash.

I also buy 4-ap (4-aminopyridine) instant-release for $125 for 300, 10mg capsules. 4-ap is basically generic Ampyra.

Evidently, Skip's has over 25,000 LDN customers and, I think, they are involved in the large-scale production of LDN for TNI Biotech, a company planning to produce LDN for use in Africa and China.

Google: TNI Biotech, Inc

IR-103 is an active immunotherapy with low dose naltrexone (LDN), an oral medication that works by activating a patient's immune system against HIV/AIDS and tumor cells or by rebalancing the immune system of patients with autoimmune diseases, such Crohn’s disease or multiple sclerosis (MS).

Naltrexone is FDA approved at high dose levels for the treatment of alcohol and opiate addiction because it has been shown that it has the ability to block opioid receptors in the brain and thereby help with these addictions. At a much lower dose, LDN can bind to opioid receptors on immune cells and also stimulate the production of both endogenous met-enkephalin and beta-endorphin, resulting in increased number of T cells and NK cells that destroy infectious organisms and cancer cells. LDN can also rebalance the immune system in patients with autoimmune diseases, leading to decreased tissue inflammation, repair of damaged tissue and decreased symptoms.

LDN is a real drug backed by real science. It's just here in the United States where the for-profit, litigious, health care system has created barriers to it's wider-acceptance.

[Myoak]

Kaitar said, "LDN at such low doses does NOT interact with any MS DMD's."

That statement is supported by a 2014 study published by the NIH: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

A couple quotes from it:

“There are no reports of LDN interactions with other medications… Pharmacologically, there is little to expect in the way of interactions… An obvious exception is LDN co-administered with an opioid…”

“One of the most exciting aspects of LDN is the low reported incidence of adverse side effects..."

Another quote from the study, "LDN has garnered a public reputation that is not commonly seen with pharmaceutical treatments."