Trixidee,
The DXM preparation I use is a pediatric cough syrup. It does contain some sweetener, but no colorants or dyes. It is important that the product contains only dextromethorphan HBr, with no added antihistamines, polystyril (for slow release) or guafinesin.
The "Pediacare Cough" and "Triaminic Long Acting Cough" with the DXM at 7.5mg/tsp concentration, available in the USA, is what I have used. The 3.5 to 4 mg doses are easier to measure than if it is at 15mg/tsp, as in the preperations intended for adults.
Robert

Would this be the right stuff?
http://www.vicks.com/products/nature...cough-remedy/#

Active Ingredients (in each 30 mL dose cup)

Dextromethorphan HBr 30 mg (Cough suppressant)

Inactive Ingredients

Citric acid, flavor, glycerin, high fructose corn syrup, honey, polyethylene glycol, propylene glycol, purified water, sodium citrate

It does have high fructose corn syrup which isn't very good for you though.

Trixiedee

and polyethylene glycol and propylene glycol are nasty too!

I would dilute it 7 to 1 or 8 to 1 with distilled or purified water and take 1 of the 30 ml dose measuring cups for a 3.5 to 4.0 mg dose. The diluted DXM should be stable in the fridge for at least a week.

In my opinion the other ingredients you described are inconsequential at the levels remaining in the diluted solution.
Robert

It's been awhile since I posted here on LDN. I believe I was one of the first advocates of LDN, maybe about 8 years ago. I feel I should mention that I am not Ashley and that I do not have PD although my father did for about 16 years. My name is John and I've been posting for my wife, Wendy, who has had tremor dominant PD for about 8 years. For several reasons, I thought it would be easier to post under another name (her neuro did not want her to take LDN back then so we thought her name should not be mentioned. Wendy did not like spending time on this subject as well. I found the idea of LDN to be fascinating and had hope in it protecting the brain from inflammation.
To come up to date, Wendy, stopped taking LDN about a year ago because she didn't think it was doing much. I believe it has slowed her progression but there is no way to know. She has progressed especially this year and has had a number of serious falls. Her first fall resulted in a fractured femur and surgery (long rod fixation to femur). She was recovering from that injury but fell again a few moths ago with several fractures to her pelvis. No surgery required but she is in a lot of pain and uses a walker or crutches to get around. I believe her first fall was due to too much Mirapex 1.875 mg (and maybe a few glasses of wine). The Mirapex appears to have caused ankle/leg swelling, low BP, some irrational thinking etc. She will be seeing a new PCP and neuro (the ones she had dropped the ball on her) so I hope she will be cut back on the Mirapex and she can get back to where she was before her falls.
On LDN, I am with Robert, the research on opioids done at the NIH by Dr. Hongs group is compelling but I see nothing being done by the drug companies to build on his work. LDN can be expensive and hard to get. I would go with Roberts DXM and avoid the LDN hassle.
I an sorry to mislead the Group on our identity. But Wendy just didn't want be reminded of her PD.
Regards, John

Ashleyk aka John, Thank you very much for starting the original thread back in 2006:

"Dextromethorphan used for PD Protection"

This looks like a very important topic and I have just joined this forum because of it. I have a relative (late 70s) who was diagnosed with parkinsons around July 2010. Although still at an early stage, there is noticable deterioration since then and we would be very interested in anything that might slow or stop it. To be more precise she was perscribed Madopar (this in UK)
12.5/50 twice a day at diagnosis. This helped her walking a lot but after about 14 months it has deteriorated to the point where dose has been raised to 12.5/50 three times a day.

I was quite excited by this thread, because as people were taking LDN and DM back in 2006, then by now, over 5 years later, enough time has passed to get hopefully some feeling for whether there is a neuro-protective effect.

QUOTE=ashleyk;827517]
To come up to date, Wendy, stopped taking LDN about a year ago because she didn't think it was doing much. I believe it has slowed her progression but there is no way to know. She has progressed especially this year and has had a number of serious falls. [/QUOTE]

Sorry to hear about Wendy's progression. Do you think though, as you wrote "especially this year", that progression has become more rapid after stopping the LDN?

I don't want to be intrusive but I think it would be really helpful if you could post a rough description of her condition (including drug doses needed) when she started taking LDN and how long that was after diagnosis, how long she took LDN for, and a rough description of her condition when she stopped taking it.

If enough people who have been taking DM and LDN could do this we could perhaps begin to get a picture of how their progression compares with the typical progression of someone not taking these.

Of course anecdotal evidence will never be as good as a double-blinded placebo-controlled trial but, in the absence of any such trial, this is all we have. It seems to me to be valuable. And it's valuable even if it shows that these things do not work. At least we would know.

Anyway thank you everyone who has shared knowledge on these topics

David

I thought I should expand some on what has been going on with my wife for the past year. Wendy stopped LDN about a year ago thinking it was too expensive and a pain to get. She couldn't tell if it helped or not. I believe it can slow progression but who knows. Wendy has had PD for maybe 9 years. It was tremor dominant. She was doing ok up until the fall of 2010. Her PD meds were Sinemet 100/25 variable and Mirapex 1.875mg. I blame the Mirapex for a lot of unexplained stuff including the fall. She had been increasing Sinemet dosage over time.
Over the past year, Wendy has not done well. She fell in Jan. causing an unDx stress fracture to her upper femur causing increasing pain for many weeks until she fell and fractured the same femur in May. I regret not dragging her to her PCP in Feb. A long rod was placed in her femur and she had a difficult rehab. She fell twice again in Sep and Oct. causing more stress fractures to her pelvis. A small bump Nov. caused a displaced fracture in her pelvic pubic ramus which is very painful. She fell yet again a week ago but x-rays appear to show no breaks.
Wendy has finally found another PCP, she does not like going to docs (we also felt the other health group is partly responsible for this). A series of tests has shown she has Osteoporosis, Anemia and mild Hyperthyroidisim, TSH 0.47. I am now trying to understand how this happened to her.
So, if anyone has a thoughts, they would be appreciated. Wendy, I feel, has not done a lot to keep healthy. She has a poor diet and drinks a lot of diet coke and does not exercise much.

Some ideas:
1. L-dopa, it has been reported, lowers Vitamin B12. Low B12 causes anemia and bone loss. I asked the doc if was checked, she got upset. To be continued. Wendy had low B12 6 years ago and was given B12. Don't know if it's been checked since. She has just started methyl B12 5mg and also Vitamin K2 with Vitamin D. Her docs don't know this yet.

2. I've read that carbonated cola drinks cause bone loss. True?
and, Aspartane is not good for you. As in PD?

3. Has anyone had a bad experience with Mirapex?

This is a start and it's all new and discouraging.
Any Comments would be appreciated.
Regards, John

John, please do not be discouraged! There is a lot to learn here and so many have contributed so much that I really believe your wife can feel better than she might feel now.

Firstly, there are a great couple of threads here about B12 AND folic acid, which is B9 if I'm not mistaken, one within the past week. Here is my take on those:

1. levodopa and B6 interact with each other not in good way. If you supplement with a B complex, which we do, you have to time it around meds, like at night.

2. low folic acid levels mess with the thyroid, glutathione levels (this is a very strong detoxifyer in the body), cause brain fog, allow higher homocysteine levels which increase chance of heart issues, and more, there are a few recent threads about folic acid or folate, however you want to call it

3. gotta take B12, again, read past threads. Methylcobalamin is the most bioavailable, and taken best on an empty stomach, don't take folic acid if you don't also take B12, see MrsD's posts.

4. There are reams of articles about aspartame and how horrible it is. If you wife craves sweets, you can use agave nectar, stevia (now available is so many forms, liquid, bulk, packages, etc), there are many substitutes for aspartame. I've read claims that it is linked to ALS and all kinds of cancers, makes you gain weight, it's awful stuff IMHO. We have never had anything that has aspartame in it in our house, and you have to really read those labels, they sneak it in everywhere.

5. Falls: would your wife go to yoga or pilates that would help her strengthen her core and help with balance? If not, maybe you could buy the Wii Fit balance board-it has balance exercises on it and trust me, they are not easy! Good for everyone in the family, regardless of PD. If your wife's balance is such that she needs help, by all means get a walker or tripod cane or something so that she doesn't keep falling, if at all possible.

6. Exercise: crucial. This is THE only thing to have been proven to actually help symptoms and possibly slow progression. You can google the biking program created by the Cleveland Clinic which has also been discussed here. But whether you can bike or not, the important thing it to keep moving, every day, dance, bike, walk, swim, whatever you can do. Google exercise and PD and you'll see the research and data on this.

I don't mean to preach. Read the posts here and you will see how so many are doing so much to maintain their health status quo. Stress is a huge factor and usually one most of us do not have control over, so try to limit that as much as possible, for us, it makes PD symptoms go through the roof. Doubling your dose will make not difference, it's scary how strongly it can affect the body.

I'm sure you will get lots of responses to your post and I hope you find some tips on ways to help and cope. There is a world of wisdom here in this forum, thank goodness!