[Tom5C]

I have been taking low dose naltrexone and one or the other of two calcium channel blockers for almost two years and have had no symptom progression in that time. Has anyone had a similar experience?

[RLSmi]

Tom5C, can you share your date of diagnosis with us and the nature and severity of your symptoms at that time? Was one of the calcium channel blockers Dynacirc? If so, what was the other?
Robert
ps I just read the answer to all of my questions on your other posting.
R

[jeanb]

Tom5C

I'm on Dynacirc - 2 years now - slowly progressing.

[ashleyk]

Hi Tom,
I have been on 4.5mg of naltrexone for 5years, 4 months. I won't say I have not progressed but my PD meds are still in the low range. I am tremor dominant I guess, no stiffness yet. Actually, I have cut back on Mirapex by half because of ankle swelling. My Sinemet 25/100 remains at 1.5 to 2 tabs a day. Also I have been taking Q10 up to 1200mg/day at the suggestion of my Neuro (she still doesn't know I take LDN). She now wants me to stop Mirapex and start Requip. But will Requip still cause ankle swelling? She also mentioned Azilect. These are two expensive drugs which the jury is still out on from what I've been reading.
As far as LDN is concerned, I base my hopes on it from the work that Dr. Hongs Pharmacology Group has done at the NIH.
http://www.fasebj.org/cgi/content/full/19/6/550
If one scrolls to the very bottom of the paper, they show journals that publish reports on naloxone (LDN), DXM etc. Most of the older pubs are free to read.

[chasmo]

All of you are well within the "symptom progression" window. my last one was 4.5 years in duration. So I do not think that your med protocol has anything to do with it. The placebo effect could be at work.

Of course I could be full of it too!! Its happened before!!

Charlie

[Conductor71]

Originally Posted by chasmo

All of you are well within the "symptom progression" window. my last one was 4.5 years in duration. So I do not think that your med protocol has anything to do with it. The placebo effect could be at work.

Of course I could be full of it too!! Its happened before!!

Charlie

Charlie,

As someone who is fairly newly diagnosed, I wonder what the 'symptom progression' window is? Is this a time fairly early on where it seems things are going slowly before they take a turn for the worse?

Thanks,

Laura

[chasmo]

Originally Posted by Conductor71

Charlie,

As someone who is fairly newly diagnosed, I wonder what the 'symptom progression' window is? Is this a time fairly early on where it seems things are going slowly before they take a turn for the worse?

Thanks,

Laura

Laura;
that time between your symptoms getting worse varies with each PWP. I think LDN and other treatments MIGHT slow down the progression, so if you are taking something, by all means continue. Many times it is so subtle that you don't even notice it til it has already finished. progression happens in steps many of us think.as far as"things taking a turn for the worse" the onset of symptoms to be random in nature. although it does seem that the worst symtoms appear later in the disease though.
hope this helps.

Charlie

[ashleyk]

In response to Charlies comment on the PD progression window. I have no idea if LDN effects the progression of PD or has a placebo effect. There are so few of us taking these opioid type antagonists and there are no easy, reliable clinical tests to measure measure their effect, that it's all a gamble. I do admit that I have doubts about LDN and I'm waiting for the other shoe to drop but I also feel it's worth doing because there's not much to loose and a lot to gain if it does halt or slow progression. I pay a lot for the stuff and it's a pain to get, others have it much easier if they pick up a bottle of cough syrup, dextromethorphan, at CVS. If it wasn't for Dr. Hong at the NIH, I would be very skeptical on these opioids. So is it wrong to Hope?
Ashley

[chasmo]

the following is a response to my inquiry to Jeff Bronstein, Ph.D.-M.D. MDS
He is the head of the Movement DIsorder Clinic at UCLA.

"PD progresses slowly but at different rates in individuals. We do not know all that determines the rate but it almost certainly depends on several factors. For example, patients with low urate blood levels seem to progress faster than those with high levels. This is a hot area of research. It may seem that it occurs in steps because how it effects ones life comes in steps (the straw that breaks the camel's back). Also symptoms can fell worse with another stressor like the flu. You are correct that some problems tend to come late in the disease such as swallowing. These problems are not inevitable but can occur in some. The feeling of shortness of breath can occur but true breathing problems are rare."
if any of you have questions I;d be happy to forward them, no guarantees he will answer though and he doesn't comment on patient specific questions.

[Sasha]

We all do what we can and what we believe has the best chance of holding at bay this awful monster that is taking over our lives. Unless we know something is dangerous, I don't believe that discrediting anyone's chosen treatment is productive.