Monday, December 30, 2013

Reversing the Symptoms of Parkinson's Disease LDN

Those of you familiar with my blog style are saying .. There's a heck of a lot of text there and hey...where's the picture that is usually here???
There is no picture to portray what this blog relates...LDN

Many of   you know I have PD (Parkinson's Disease).  I developed end stage early on set PD 30 years ago at age 29,
I was stiff, shaky and incontinent, had difficulty breathing, in a wheel chair and needing help with almost everything.  As well, I was allergic to the dye used in the suite of drugs used for the problem  so medicine was not  a viable option.(My story can be read at: click here.)  That site also has many helpful ways for coping with chronic illness  and the impossible.

I turned to energy healing and crystals out of curiosity and desperation.  In this world, I progressed from my wheelchair to a scooter to a Segway to my own feet and complete independence -with obvious difficulty but although shaky and frail, could do things for myself when necessary.

Over the years, well meaning friends sent me the latest news on treatment for PD - everything from deep brain surgery to herbal concoctions, mystical chants, holy waters and more.
None of them resonated with me and I left them alone.

Web surfing, I discovered a small page of PDers searching for LDN,  It piqued my interest  and my interest grew as I followed the thread backwards.

People with PD and other chronic disease were having remarkable success with this substance. Why hadn't I heard about it?

The home page is here.

In short, Naltrexone is a drug used in  50 mg dosages to treat opium addiction but used in small (low) doses of 1.5, 3,0, or 4.5mg has remarkable effects on the auto-immune and central  nervous systems,  Hence the "off label" use is called LDN (low dose naltrexone).  Used in this low dosage, the only side effects are insomnia (take the pill at breakfast instead of bed time) and lucid dreams (only for a short time while adjusting to the drug). 

So what's the big deal? Why the Blog?  Just pop down to WalGreens and pick up a bottle over the counter.  Or get a Rx from your friendly GP or neurologist.

In USA or Canada, LDN is not available without a Rx.  As well, there are only a handful of doctors nationwide willing to write a Rx for it and they don't advertise.

In Ohio, I was told it was impossible.  My GP refused saying it was the realm of my specialist.   OSU Center of Excellence for Movement Disorders refused saying there wasn't enough evidence it worked.  My pharmacist said even if I could get a Rx for it, she couldn't fill it (or recommend anyone who could) as it wasn't even on the books in Ohio.

Dead end - right?  Merely a bump (all be it a large one) in the road.

Scouring, and rescouring threads and sub-threads on the net, hubby and I discovered that while LDN was technically available and we  could find compounders (pharmacists) who could make  it from scratch, if we could only  get the elusive Rx. The only few  doctors listed anywhere were retired or no longer dealt with LDN.

Another bump (all be it a large one) in the road.

Further digging showed that while naltrexone in the low dosage was impossible to obtain, the larger dose 50mg powdered capsule was readily available without a Rx from Europe  and India.  It was unregulated  and could cost as much as $500/ month supply.

Those lucky enough to be able to afford it in North America, were breaking the 50mg capsule open, dropping the contents into 10 ml of distilled water, shaking well and then taking 1 ml of the resulting solution at bedtime.

Apart from the prohibitive price, I was leery of the source and pureness of the naltrexone.  As well, I  doubted my ability to mix it and dose it accurately.

Another bump (all be it a large one) in the road.

Sheer perseverance on the part of my hubby yielded GOLD...
a doctor in New York willing to work via phone consult ($175) and a pharmacist in Florida willing to make LDN and send it out to me ($60 for THREE month supply - shipping included).

I have been using the 1.5 mg strength for a week now.   I had very colourful - but not scary- dreams the first night only.  No other untoward symptoms noted.

I (as well as my family) am astounded by the immediate and tangible wellbeing from this small capsule.  I have had to cut out TWO entire doses of sinemet, have balance, fine motor control, a softness to my muscles and breathing unknown for decades.

My next blog on LDN  will detail my daily ups and downs as I adjust to my new freedom(s).

In the interim, I am willing to share my sources.  Contact me at  my email  - put LDN in subject line.

I write this blog with the aim of raising the visibility and availablity of LDN.

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