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View Full Version : LDN and Parkinson?-Low-Dose Naltrexone: Medical Revolution Or Pseudoscience?


Endurance
November 12th, 2011, 04:39 PM
Hello Everybody,
I have noticed some interest in LDN (Low Dose Naltrexone) mainly used for treating MS (multiple sclerosis), HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders. Parkinson's belongs to the central nervous system diseases category. As such, let's see what can we expect. Please be advised that apparently this website >http://www.lowdosenaltrexone.org/-->embellishes the preliminary research and presents LDN as an effective treatment for a ridiculously long list of diseases, as I mentioned in a previous post.
Here’s what WIKKIPEDIA has to say about it--> http://en.wikipedia.org/wiki/Low_dose_naltrexone
“Low Dose Naltrexone (LDN) describes the "off-label" use of the medication naltrexone, at low doses and for other diseases such as multiple sclerosis. Naltrexone is typically prescribed for opioid dependence or alcohol dependence as it is a strong opioid antogonist. Preliminary research suggests low dose naltrexone may be useful in preventing opioid tolerance and dependence when combined with an opioid, reduce the severity of opioid withdrawal, or improve fibromyalgia symptoms, though much more research needs to be done before it can be recommended for clinical use.There have also been pseudoscientific claims about its efficacy in treating a wide range of diseases such as cancer and HIV, which are not generally supported by scientific evidence. The treatment has been widely promoted through websites run by organizations advocating its use.”
In addition, please read a more realistic, scientific approach on LDN @--> http://getbetterhealth.com/low-dose-naltrexone-medical-revolution-or-pseudoscience/2010.05.13 (THEY DO NOT SELL ANYTHING, instead, they present honest opinions and facts. YOU DECIDE WHAT’s credible or not):
"...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 autoimmune, and therefore an immunosuppresant could theoretically be applied to many autoimmune diseases. But many of the diseases on the list are not autoimmune. 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."
I know that hope is all we've got but we have to exercise caution in getting our expectations too high to prevent disappointment that will hurt and will throw us into deeper depression.

ludiemae
November 12th, 2011, 05:49 PM
If everyone were afraid to try things outside the box for which they were designed we may never know everything that they will help with. There are numerous sites , medical research sites with information about LDN. They are TESTING it for all sorts of diseases. There are PWP's on other forums that have seen amazing results with LDN. They all agree it does not work forever so far two three years is the longest. One of the ladies on the forum is an MD she was very hesitant to try it until her pain was so great she decided she had nothing to lose. She has had great results also. Some have had nothing from it. But no one, saw things that weren't there, from it, jerked involuntarily from it, or any of the many other things some of the PD meds can cause. It has been around in a much higher dose for 25 years. Without lawsuits ect. I intend to raise my expectations as high as they will go for anything that someone with this disease has done or tried and had positive results! I refuse to sit here and cry over what my husbands illness has cost us in lost vacations or whatever! They are not lost unless I stop raising my expectations. All of us are not in a deep depression and take disappointment as the next step to something better. Sometimes things work for reasons, and we don't know why. Just like we have illnesses and we don't know why. I don't care why! I just care that it has helped PWPs and that it can do no harm. Ludie

lanab
November 12th, 2011, 06:00 PM
Ludie, don't hold back girl tell us how you really feel! LMBO. :eek:

ludiemae
November 12th, 2011, 06:06 PM
lanab, I love you!!! It wasn't me, it was the girls, I swear!:p Ludie

lanab
November 12th, 2011, 06:09 PM
Ludie, You know it is not nice to swear! :D HEHEHE;)

ludiemae
November 12th, 2011, 06:12 PM
yes, mam!!:(

Endurance
November 12th, 2011, 08:35 PM
Venting out ones frustrations and worries privately is healthy; publicly I am not so sure. My sole reason of posting info about LDN and Parkinson's is a sincere effort to prevent Parkinson’s patients and care givers alike from rushing into using it. Please believe that I am not here for any popularity contest. I care. Having said that, I really hope you and your spouse feel better now and I wish you good luck in trying LDN. Before I go, Ladies and Gentlemen please read the brief list below with LDN possible side effects. Speaking about adverse effects of low dose naltrexone in patients Dr Ploesser J, Weinstock and Dr Thomas E, International Journal of Pharmaceutical in March 2010 explain:
“Naltrexone is a water soluble compound which crosses the blood brain barrier, and this increases the potential for neurologic side effects. Reported adverse effects of standard dose naltrexone include anxiety, nervousness, confusion, drowsiness, hallucinations, skin crawling, blurred vision, muscle or joint pain, vomiting, diarrhea, stomach pain, liver disease, and skin rash, mood change, headache, trouble concentrating, vivid dreams, nausea, abdominal pain, diarrhea, anorexia, weight gain.
No one knows yet how Parkinson conventional drugs react with LDN. But that's another story. Or is it? Will you have your spouse continue taking his Parkinson medication while taking LDN? Well, I sincerely wish you success. Do keep us posted with his improvement.

ludiemae
November 13th, 2011, 05:51 AM
I assure you that I do not Rush into anything concerning my husbands health. As far as popularity, where does that even come into this? There is more updated research to consider than that from 2010. If you just read back through some of the previous posts about LDN on this forum you will see some of this information.There are sites that DRs and researchers have provided for no other reason than that they feel strongly that this medication could help. because they have watched the difference in their patients! As far as venting ones frustrations and worries in public... I invite you to read back through your own posts from the beginning! Also, there is a huge difference in the Naltrexone and the LDN. The dosage is so much lower than the 50 mg that you cannot compare the two. I Will Not get into a battle with you about this. That is not what this forum is for. And it is not for one to tell others what they should or should not do. We try to provide information so one can make up their own mind. One's personal health care is ones own personal choice. You do not seem to be reading the current information on this drug. My husband saw snakes on Mirapex! One of the most commonly prescribed PD meds! I am very aware of side effects. I cried the first time I had to give him Mirapex, because I was so scared. I take none of this lightly! Ludie

Edun
November 13th, 2011, 04:36 PM
Ludie is absolutely RIGHT about the LDN.
Many Parkinson’s disease patients have had great success with ”Low Dose Naltrexone” LDN. We sometimes need to have an open mind and do our own research, and make our own decisions ….. From what I’ve read, LDN is not a “cure”, but much like our meds, it helps control symptoms.

http://parkinsonsfocustoday.blogspot.com/2009/05/ldn-parkinsons-disease-treatment-or.html

http://www.blogtalkradio.com/parkinsons-recovery/2011/10/05/low-dose-naltrexone

Thanks Ludie for having an open mind and trying to help others...you are the BEST.

Edun
November 13th, 2011, 05:50 PM
There are pages and pages of discussion about LDN on the "Patients Like Me" forum at http://www.patientslikeme.com/home
If anyone would like to read what others have to say about LDN, then join this forum as a Parkinson's Disease patient. I've read it all, and found it very interesting indeed.

Here is just one post from someone on the forum.....


"For those of us with PD who are not so patiently waiting for "the cure" to come, I wanted to share with you some of my own reasons for hope, based on my own relentless research. While I still work full-time, my PD research has become my "official" part-time job. I hope what I have to say will be of help to others with PD, which is why I am so eager to share with you what I have learned and my experiences thus far. While I am certainly not an expert and have no background in medicine or science, I have been blessed (??) with a highly inquisitive nature and an obsession for research - especially now. I understand that PD is expressed in different ways for everyone and my heart goes out to those of you who have been suffering with this disease for so many more years than I have. I do pray everyday for a cure for all of us. First my disclaimer: Please know that the information I am sharing is from my own personal experiences. It is not meant to be viewed as imposing or offensive to any one else with differing views.

My story: I am 61 years old and have always been healthy and active and people tell me I look much younger than my age....so how in the world could I ever have been diagnosed with such a devastating disease?? I am certain that everyone on this site has asked themselves the same question. The reality of my diagnosis 2 years ago hit me hard when it was confirmed by 3 MDS's. One MDS was from The Mayo Clinic in Scottsdale, AZ, the other is my current MDS, who is board certified in Neurology, Clinical Neurophysiology and the Medical Director of the Movement Disorder Program at a prominent Neuroscience Institute in my area (the first MDS I conferred with is not worth mentioning due to his negative attitude and indifferent demeanor).

One of the things that I have found most difficult to accept is that, according to our doctors, there is not much more that we can do for PD, other than exercise, eat healthy, have a positive attitude, do relaxation techniques (all of which are very important!) and....take the dopamine meds that are prescribed for us. I am so thankful for the prescription meds that I do take now - Requip, Sinemet and Azilect, for they allow me to function on a daily basis and also allow me to continue to work full-time. My frustration lies in the fact that where is the hope in all of this? The current PD meds that we take are nothing more than temporary, but necessary "band-aids"....while our disease continues to progress.

My question for those of us who have this disease, especially for those of us who have been most recently diagnosed....with all of the information available about PD, doesn't it make sense that we look at all of our options?? While I am fortunate to be living quite "comfortably" with PD right now because of my more recent diagnosis and the meds I am taking, my daily exercise and my attempts at stress reduction...my symptoms are under control for the most part...but what does the future hold?? I, myself, cannot live in the now without looking at the future.

Most of us by now have realized that our own medical doctors do not have the ALL of the answers to this disease, regardless of the credentials they may have. In this area I do have some first hand knowledge, as my father was an MD and a Psychiatrist, and my husband's father was an MD. I had a great deal of respect for my father, who was quite well-known and very well-respected in our community. I worked in his office for many years and he was the personal physician to several other medical doctors, who also referred some of their most chronically ill patients to him because of his expertise. My point is this...my father told me something that I never forgot when he said that medical doctors try to do their best with the information they know, but each and every one of them is still just "practicing" medicine, which is why they refer to doctors in a medical practice as "practicing medicine". I have never fogotten his words. That comment was so disturbing to me when I was young because doctors, including my own father, were like "gods" and if they didn't have all of the answers - who did???

For this reason, as I have matured, I have learned to always be pro-active when it comes to my medical care. We have always been told that we must be our biggest advocate for the care we receive. So...picture this...a doctor's worst nightmare...I arrive at my MDS appointments with a notebook filled with different things I have researched and my many questions. I am sure my MDS must dread each appointment she has with me. She is an excellent doctor in her field and I respect her knowledge and seek her consent and hopefully her blessing on the different things that I ask her about.

To my delight, my unrelenting persistence helped me to finally "convince" my doctor to do some of her own research on my most persistent question - she called it my "obsession" - to take Low Dose Naltrexone for my PD. Initially she said "no" there was not enough scientific evidence to prove that it worked for PD and that I absolutely could not take it with my Azilect (an MAO Inhibitor), which she insisted I continue to take because of the new studies in the Sept. 24, 2009 issue of The New England Journal of Medicine confirming the neuroprotection benefits of Azilect. http://content.nejm.org/cgi/content/short/361/13/1268

Much to my amazement, she called me the next day and said that she would write me a prescription for LDN - 3mg and that I could take it along with my Azilect (she actually called the Azilect research dept. and asked them if LDN could be taken with Azilect and they assured her that I could take both!) She asked me to call her right away if I had any unusual side effects., which I have not.

I have been taking the LDN for 4 weeks now and my results have been nothing short of miraculous, as I had mentioned in another post.

My MDS was a keynote speaker at the big HOPE Conference for PD in Seattle last weekend with 700 plus people in attendance. I saw her afterwards and she looked at me and smiled and immediately asked how I was doing on the LDN and also me asked if I had celebrated after receiving her call. I told her YES!! I was having fantastic results!! I can't wait to see her on my next appt. on Dec. 22 and for the first time, she may actually be looking forward to see me too! What a breakthrough this has been for me!

My results with LDN so far after 4 weeks:

1) I have lowered my PD meds from 6mg of Requip XL to 2 mg. of generic requip, lowered my Sinemet from the prescribed 1/2 tab of 25/100 - 3 times daily - to 1/2 tab - twice daily and continue to take my Azilect 1 mg and 1,200 mgs. of COQ10. This med reduction must only be done with your doctor's approval.

2) My severe anxiety, that has plagued me for my entire adult life is gone - I am no longer taking Xanax for anxiety - I haven't taken any since the first day I started on LDN. This is the most welcome effect I have had with LDN - it is hard to believe I can feel so relaxed.

3) Chronic insomnia has been a major problem for me and I have been on Lunesta 3 mg - every night for several years. I am now taking a much lower dose of generic Ambien - 1/2 a tab....and one night I didn't take it at all and I slept!! I will continue to attempt to sleep without the Ambien - huge progress!!

3) I feel "calm and relaxed" rather than the "speedy" running on adrenaline feeling which has been my normal state for so many years. I didn't even recall how it felt to be relaxed. I now have "good energy" that lasts throughout the day, but yet I am calm and relaxed at the same time...amazing!

4) My PD symptoms in relation to balance, slowness of movement, dizziness are non-existent - that is most likely because I am still taking a very low dose of Sinemet. I do continue to have right hand, right foot and right leg tremors, which I understand the LDN does not help with.

There was a breaking news alert this week from the Michael J Fox Foundation regarding a clinical study they will be starting using Naltrexone for compulsions related to dopamine agonists - they mentioned that Naltrexone is already FDA approved and it is safe for people with Parkinson's to take."

http://www.michaeljfox.org/newsEvents_mjffInTheNews_pressReleases_article.cfm ?ID=378

There is HOPE!! LDN could be our miracle before the cure... Love from Lexie

The Low Dose Naltrexone Homepage
"Low Dose Naltrexone (LDN) may well be the most important therapeutic breakthrough in over fifty years. It provides a new, safe and inexpensive method of ...