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Joined: Nov 2007
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trudi Offline OP
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some websites I found about LDN...look closely & you'll learn some interesting things you can do to take charge of your own health....

http://www.webspawner.com/users/howtoobtainldn/index.html


LDN: low dose naltrexone

The drug used is naltrexone in a low dose formulation.


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


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hi jay,
brand name of LDN is
1)naltima- INTAS Pharma
2)nodict- Sun Pharma
i have bought naltima and taking it in liquid form. cost around rs.550 for 10 tablets of 50 mg.
side effects last only 7-10 days and include sleep disorder, increase in pain , fatigue etc.
since i have read that you are on remicade you can't take it before remicade is completely out of your body. LDN strengthens the immune system of the body which is opposite of what remicade does.
i will keep all informed about my status.

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one more thing i am not on NSD and i eat what i want to eat. i just avoid curd and buttermilk. wheat and rice are my staple diets. i drink milk also but with turmeriic powder+dry ginger powder.NSD is near impossible for me to follow, i tried it for 2 days but couldn't continue.

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Hi everyone.I have read that ankylosing spondylitis is caused from our immune system being turned on to certain things such as (bacteria,enviroment,hla-b27).The immune system turns it self on to these and attacks the body and doesent turn it self off .If LDn is used wouldn,t this be worse because the immune system is already too active.Ldn would be just making matters worse by strengthing it even more.On the contrary,THFblockers block this responce of the immune and lowers the immune responce which in turn.reduces the attack to our body.

I wonder then how it works if LDN is totally contrary to what Should be done in terms of shutting off the imunity attack on our body.Also i cannot find anything that states it will help AS,just found articles on MS,cancer.

Dont get me wrong,all im saying is i wouldnt want to fool around with a drug that has no known facts as to how it works for Immunity.


Thanks

John

Just a thought.




Happy Trails To You Until We Meet Again




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Fonzy

You have to realize that there are parts of the immune system that also control inflammation. For example Interleukin 10 and IL 27 are cytokines that reduce inflammation and cancel out the effets of the pro-inflammatory cytokines like IL 23 and IL 17. The trick is to stimulate the right part of the immune system that can help and not the part that will make it worse.

Penn State has LDN in a phase 2 placebo controlled trial for crohns and the result look to be very promising. Crohns is an inflammatory disorder related to AS. I have not found a specific trial with LDN for AS either unfortunately.

LDN and PEnn State.

http://live.psu.edu/story/17985

The NIH has given Penn STate $500,000 to continue the research into LDN. They don't give that out if the research is not promising. Those grants are very competitive.

Last edited by drizzit; 04/15/09 09:28 PM.

No families take so little medicine as those of doctors, except those of apothecaries.

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Thanks alot Steve.Its just that this Ldn thing really got my attention ,and i am very excited about it.I am fused in the back,and now i think my neck is.I wonder if LdN just takes the pain away ,or will it also stop the progression.

Thqanks again.

I hope people dont see me as being a negative towards LDN with all my questions.I am just as excited.Cant wait to tell MY Rheumy.




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Hey John, how are you? That's a great question you posed. I asked the same thing too awhile back.
I wish I could find the website/articles that explained how LDN works, but I'm at the wrong computer! I think Bridget has them, and she does a great job of explaining it too.

I am by no means any sort of an expert, but I think LDN is more of an immunomodulator, from what I understand, and there are many clinical trials trying to figure out just exactly why and how it works so well for so many people with autoimmune disorders. So, you're right, no one knows for sure *exactly* how this stuff works, but the results of LDN use are so positively overwhelming, I really don't think the medical community has much of a choice but to figure out the mechanisms of just how it works so well. it's kind of neat that this is so patient-driven in a way - soooo many patients are now requesting this off-label and hugely benefitting, but no companies can really make a buck off it because it's already generic, so we can eliminate the possibility that this is just so-called big pharma getting greedy off it. People just take it because it seems to work, plain and simple.

I think the "immune system" should be renamed "immune systemS", because there are so many individual parts of this complex system, which function all at the same time. If an immune suppressing medication turns down one of the functions, the rest can keep ticking along like they usually do. Take enbrel for example - it can suppress some parts of the immune system, but not all. If it completely turned down all, then we'd be in really big trouble! The newer anti-TNF meds are getting increasingly more specific too, affecting just the minimal parts of the immune system necessary to be effective. It's going to be exciting to see what types of meds will come out in the next 20 years - the more specific, the more effective, and the less side effects they'll have.

Before I forget what I was originally trying to talk about here - One of the main effects of LDN is modulation of the immune system - by increasing endorphins (endorphins are immunomodulators), which increase and decrease different parts of the immune system, and thankfully, LDN seems to increase and decrease the right parts so that it actually benefits. Why exactly, is what alot of research is looking at right now. Also, LDN is very popular because effects are seen at very low doses, with nearly no side effects, and the stuff has been on the market at higher doses for a long time, which is reassuring in a way - we would have heard about it if there were some awful side effects.

Again, I'm no expert, and not a doctor, but this is just what I gather from some very late nights in the med library!

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I agree with you totally Megan.Thanks for the reply.

John




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Me again.I was wondering what to ask my Rheumy about this LDN.I Dont want to look like a fool when i ask her about it.Is it possible for someone to compile a list so that i would have questions for her .

Such as'
How much to take
questions about compounding etc

Just incase she is unaware of this drug for AS.

John




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trudi Offline OP
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www.lowdosenaltrexone.org has all the info you can print out for your doctor.

It has contraindications, pharmacies, dosing, background information, etc.



LDN cannot reverse fusion. I don't think anything can do that but surgery. LDN has been known to stop pain and disease progression. Clinical trials with MS & Chron's have showed a LOT of disease reversals... the website above explains what the initial posted video doesn't explain.

Here's some of the website info:

Quote:

What is low-dose naltrexone and why is it important?

> Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.
>
In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.

Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.

.
In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body's immune system. He found that this low dose, taken at bedtime, was able to enhance a patient's response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]

.
In the mid-1990's, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN.

.
How does LDN work?

> 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. Animal research by I. Zagon, PhD, and his colleagues has shown a marked increase in metenkephalin levels as well. [Note: Additional information for Dr. Zagon can be found at the end of this page.]

.
Bihari says that his patients with HIV/AIDS who regularly took LDN before the availability of HAART were generally spared any deterioration of their important helper T cells (CD4+).

.
In human cancer, research by Zagon over many years has demonstrated inhibition of a number of different human tumors in laboratory studies by using endorphins and low dose naltrexone. It is suggested that the increased endorphin and enkephalin levels, induced by LDN, work directly on the tumors' opioid receptors — and, perhaps, induce cancer cell death (apoptosis). In addition, it is believed that they act to increase natural killer cells and other healthy immune defenses against cancer.

.
In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.


> LDN has demonstrated efficacy in thousands of cases.

.
Cancer. As of mid-2004, Dr. Bihari reported having treated over 300 patients who had a cancer that had failed to respond to standard treatments. Of that group, some 50%, after four to six months treatment with LDN, began to demonstrate a halt in cancer growth and, of those, over one-third have shown objective signs of tumor shrinkage.

.
Autoimmune diseases. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there were some 400 in Dr. Bihari's practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.

.
HIV/AIDS. As of September 2003, Dr. Bihari had been treating 350 AIDS patients using LDN in conjunction with accepted AIDS therapies. Over the prior 7 years over 85% of these patients showed no detectable levels of the HIV virus — a much higher success rate than most current AIDS treatments, and with no significant side effects. It is also worth noting that many HIV/AIDS patients have been living symptom-free for years taking only LDN with no other medications.

.
Central Nervous System disorders. Anecdotal reports continue to be received concerning beneficial effects of LDN on the course of Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS—Lou Gehrig’s disease), and primary lateral sclerosis. Dr. Jaquelyn McCandless has found a very positive effect of LDN, in appropriately reduced dosage and applied as a transdermal cream, in children with autism.

.
> How is it possible that one medication can impact such a wide range of disorders?

.
The disorders listed above all share a particular feature: in all of them, the immune system plays a central role. Low blood levels of endorphins are generally present, contributing to the disease-associated immune deficiencies.

.
Research by others — on neuropeptide receptors expressed by various human tumors — has found opioid receptors in many types of cancer:

* Brain tumors (both astrocytoma and glioblastoma)
* Breast cancer
* Endometrial cancer
* Head and neck squamous cell carcinoma
* Myeloid leukemia
* Lung cancer (both small cell and non-small cell)
* Neuroblastoma and others...

.
These findings suggest the possibility for a beneficial LDN effect in a wide variety of common cancers.




more details on their site


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


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