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marilynb

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 #16 
Hi runningmom, I have lupus, colitis, and sjogren's. I started taking ldn 3/9/2017, I had sores all over my back for 3 yrs. Bad muscle fatigue from very little exercise, and overall fatigue. I also felt lousy after being in sun and/or heat and humidity. After taking ldn for this short time, I wake up refreshed, the sores on my back are almost gone, and I can walk 30 minutes without the BAD muscle fatigue I had before!!! I strongly urge you to go to ldn homepage and read about this miracle for our damaged immune systems. I haven't felt this good in 30 years!!! You don't need a doctor to get this med., both my doctors refused(totally ticked me off). I got the full strength naltrexone from Canada without prescription, mix 1- 50 mg pill with 50 mg filtered water, or distilled water. Then I take 4 mgs of the solution right before bedtime. I've posted about this miracle on this board before, for some reason people are afraid or skeptical and won't or don't try it. There are absolutly zero side effects!!! Please get this all of you and help your hurting bodies, I would never take plaquenil, hearing the awful stories on this board about rheumitologists  drugs.. Get back to me on this, I can tell all of you where to get this drug extremely cheap, and it can only help all of you---before it's to late! Waiting to hear frome everyone on this chat board. Thank you all, HUGS to you all!!!
Baker1

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 #17 
When I was first dx'd with lupus seven years ago, I personally considered it to be mild because I had very little lupus activity. However, lupus is lupus, no matter how much disease activity there is. I realized that just because I didn't feel bad that when my rheumy switched me from Imuran to Methotrexate things were worse than I believed. Things did get worse (joint & muscle pain, rashes, brain fog).
I switched to Cellcept in February and upped the dosage in March. I saw my rheumy this week and she said that I seem to be doing better. We'll see what the labs say. I hope this will continue so can at least get off of the prednisone.
Lupus is lupus no matter how much disease activity you have.

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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
marilynb

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 #18 
Baker will you please try ldn, it is seriously helping me, I haven't felt this good in 30 years.  It is not a farce, it REALLY helps. Read my post on runningmom(not sure of name), it explains how it's helping me, and how to get it. PLEASE don't dismiss this drug, it will be big in the future, but why wait, start healing your body now while you still have a chance!!! ldn homepage on your computer to read about it. PLEASE get this help for your body!!!!! No side effects, you can get it on your own, don't need doctor's permission, PLEASE help your ravished body!!! Get back to me, and start to enjoy your life again!!!!
Lovealways

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 #19 
why did your doctors refuse marilynb
marilynb

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 #20 
Don't know why they refused, they both said' "I know nothing about it and I won't prescribe it for you". I was seeing my rheumatologist when I asked her, we argued quite a bit about it, I told her it helps  the immune system, she said I'm not treating your immune system. We went back and forth quite a bit, I ended up telling her if she won't order that for me, I'm not taking her blood tests.  That's the stupidity of not being opened minded of some doctors, I don't need that nonsense, it's my body, let me try something that is being researched and showing very promising results. Do your body and mind a favor and go to ldn homepage and check into it yourself. It is helping me a lot.
Running Momma

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 #21 
There is an ldn Facebook group that is very active that I was referred to by someone else. That's great news, marilynb, that it's working for you! Has anyone read The Lupus Recovery Diet by Jill Harrington?
Has anyone tried diet for managing symptoms?
Thank you for all of your input and stories. I live in a small town and can't find a support group.
Baker1

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 #22 
If this treatment is being studied, you really should try to find a clinical trial to participate in. This way they can monitor your lupus activty. Just because you feel better doesn't always mean anything.
I'm also not sure how you can say that there are no side effects. It's great that you aren't suffering from any, but the next person might.
If this treatment is only in the trial stage in the US, I will stick with the FDA approved treatments. Mind you I have participated in clinical trials that my rheumy thought I would benefit from.

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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
upstater

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 #23 
I read the reviews of that book and it sounds like it is simply a vegan diet with no "white foods". 


Robinj

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 #24 
Looks like another thread about this has been removed. Again, please understand that LDN claims to boost the immune system. Something that is counterproductive to AI diseases. 

In addition to proposed uses for low-dose naltrexone that have been studied in clinical research, low-dose naltrexone advocates make unproven claims of its efficacy in treating other conditions, including: various types of cancer, Alzheimer's diseaseHIV/AIDSrheumatoid arthritis, and others. Steven Novella of the Yale University School of Medicine disputed these claims as unsupported by rigorous clinical research, calling many applications pseudoscientific. He further argues that the claim that low-dose naltrexone as an effective treatment for both immune dysfunction and autoimmune diseases is contradictory and that improving the immune system could make the autoimmune disease worse.

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Baker1

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 #25 
I was talking about the LDN, not the diet. Also, after reading Robin's post I will never try the LDN.
As for the diet, I've already changed my diet because of other health problems and that I take Warfarin. But I will never become vegan because there are many vegetables that I can't eat because of the Warfarin.

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Diane M
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upstater

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 #26 
No...I know, Baker. I was just commenting on her question about the book.
Baker1

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 #27 
Sorry, for the misunderstanding.
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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
marilynb

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 #28 
Robin, don't know where that person got that info from, ldn doesn't boost the immune system, it RESETS the immune system. I take that to mean the immune system works the way it's supposed to, instead of attacking our bodies. So far it's working in my body, I also noticed my joints don't hurt all the time like they did before ldn, maybe because my immune system isn't attacking them anymore???  Baker, are you in WI? I can't remember if it was you or cakelady--know it was someone with a sweet name, LOL. Baker, ldn is low dose naltrexone, naltrexone is an FDA approved drug given to addicts in 50 mg doses to help with addiction. Probably there aren't side effects because we only take 4 mgs for immune system disorders, I am VERY sensitive to prescription drugs, I have had very bad reactions from several FDA approved drugs. Also if you are in WI, there is a rheumatologist in Fondulac that prescribes ldn, maybe you could talk to someone there. There are MANY doctors that prescribe ldn to their patients, I also don't think it's in EARLY clinical trials. I believe it's been around for some time, but the big drug companies don't want to make it, look at all the money they'll lose from loss of sales of their other crud drugs that hurt us. All I can say is ldn is helping me, and it will help all of you too if you just give it a try.
Robinj

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 #29 

The website, lowdosenaltrexone.org, embellishes the preliminary research and presents LDN as an effective treatment. They list that it is effective for:

Cancers:

* Bladder Cancer
* Breast Cancer
* Carcinoid
* Colon & Rectal Cancer
* Glioblastoma
* Liver Cancer
* Lung Cancer (Non-Small Cell)
* Lymphocytic Leukemia (chronic)
* Lymphoma (Hodgkin’s and Non-Hodgkin’s)
* Malignant Melanoma
* Multiple Myeloma
* Neuroblastoma
* Ovarian Cancer
* Pancreatic Cancer
* Prostate Cancer (untreated)
* Renal Cell Carcinoma
* Throat Cancer
* Uterine Cancer

Other Diseases:

* ALS (Lou Gehrig’s Disease)
* Alzheimer’s Disease
* Ankylosing Spondylitis
* Autism Spectrum Disorders
* Behcet’s Disease
* Celiac Disease
* Chronic Fatigue Syndrome
* CREST syndrome
* Crohn’s Disease
* Emphysema (COPD)
* Endometriosis
* Fibromyalgia
* HIV/AIDS
* Irritable Bowel Syndrome (IBS)
* Multiple Sclerosis (MS)
* Parkinson’s Disease
* Pemphigoid
* Primary Lateral Sclerosis (PLS)
* Psoriasis
* Rheumatoid Arthritis
* Sarcoidosis
* Scleroderma
* Stiff Person Syndrome (SPS)
* Systemic Lupus (SLE)
* Transverse Myelitis
* Ulcerative Colitis
* Wegener’s Granulomatosis

Right there we have a huge red flag – a treatment that works for a long list of diseases with different etiologies. Many of the diseases on the list are auto-immune, and therefore an immunosuppresant could theoretically be applied to many auto-immune diseases. But many of the diseases on the list are not auto-immune.

Treating a long list of cancers is another red flag, as well as HIV/AIDS. The justification for this is that LDS “boosts the immune system,” this phrase alone also being another indication of a dubious treatment. Scientists do not talk of “boosting” the immune system because this concept is too vague to be of any use. The immune system in healthy individuals is probably already operating within optimal parameters, especially since immune activity is a trade off between fighting off invaders while not causing too much damage to the host. Increasing immune activity, therefore, does not always equal improving immune function. In individuals who have a weakened immune system because of chronic disease, poor nutrition, or toxicity their immune systems can be restored to more normal function with treatment – but these are often specific treatments that address an underlying cause.

Further, there is an inherent contradiction in simultaneously treating diseases that are auto-immune (the immune system attacking the host), and immunodeficiency diseases (like AIDS) and claiming to treat cancer by “boosting” immune activity. Increasing immune activity actually worsens auto-immune diseases, and suppressing the immune system would worsen AIDS. This is a difficult contradiction to resolve.

The end result is just another bogus treatment with claims that are literally too good to be true, based upon pre-clinical or preliminary evidence only. Proponents have turned into proselytizers – saying on their website:”

If you or someone you know has connections in the media, the medical community, or to those in developing countries involved in AIDS policy or treatment, please let them know about LDN.

Truly promising and science-based treatments do not need an organization to promote them. The science will speak for itself.

https://sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/


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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
marilynb

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 #30 
All I can tell you is that ldn IS HELPING MY BODY!!!  Why always trying to prove things bad even though it is helping people??? Why not try it yourself, you will be surprised Robin. I know a gal with MS, she takes ldn and it is helping her too. Her doctor prescribed it for her.
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