[doydie]

Hi, I am a long time member of the MS forum. My husband had his annual physical yesterday, has been having some tremors in his hand and was told it is Parkinson. Needless to say I am scared to death. What are we to do, get matching mobility scooters?? LOL So what is available for meds other than Senemet which didn't look like a drug I would like

[soccertese]

your husband can decide what/when he wants to take, the current drugs treat the symptoms,they don't slow down the disease. there is a possibility that azilect might slow progression but the FDA refused to allow the mfg to claim that after a large clinical trial.
more pd'ers take sinemet than any other drug and eventually everyone takes it if they can tolerate it. it's a combination of carbidopa and levodopa (l-dopa) and has been prescribed since 1970's so hard to believe such a "terrible" drug could be in use for so long by so many pd'ers. l-dopa is a naturally occurring amino acid which gets converted to dopamine in your brain. you probably get 100x more amino acid precursors to l-dopa in 1 egg than is in 1 sinemet tablet yet does eating an egg have side affects? no. if you give a sinemet tablet to someone without pd they might get a little naseus, might lower blood pressure but they don't exhibit the involuntary movements that advanced pd'ers get, like michael j fox, so the side affects are a result of having pd and taking sinemet, not just sinemet.

if you read the side affects of aspirin you wouldn't take it, mfg's are required to report every known problem for a drug on the drug insert.

as far as i know, noone has died from taking sinemet, i've read cases where people have taken 100x the normal dose and lived.

it has been a god send medicine, prior to it life was bleak, you died at an earlier age and were institutiionalized.

there are l-dopa analogs called dopamine agonists which were created as an alternative, they don't treat symptoms as well as sinemet but in early stages work well but might have more side affects such as obsessive compulsive behavior, drowsiness and edema. the advantage is they are longer lasting, you can get them in 1/day formulations and a patch.

i write all this because sinemet works for me after 7 years of taking it and it irks me when someone comes on the board and attacks a drug that works very well for the majority of pd'ers. keep in mind that people that are doing well don't post on these boards, you may not be getting a representative sample.

everyone is different with pd, it's an interesting disease because the patient has to tell the doctor how they are doing, there are no lab tests that can measure a chemical in your blood that tells the doctor how a drug is working. if an agonist works great, then you just take the agonist. if it doesn't work well enough, then you play with doseages, timing. that can take months. if that doesn't work, you can try another agonist. if that doesn't work, you can try sinemet after dosing down from the agonist. or vice versa. if neither an agonist or sinemet works well enough, than you can try both. if that isn't good enough, you can add other drugs. my point is it can be a quick process to find the right drug or months of trying different drug regimes. it's a process and may be a tradeoff of how much your husband wants to deal with taking more than 1 drug, times/day, side affects, cost and how much he wants to reduce his pd symptoms, he might be able to find the drugs that get rid of all his symptoms but it might be just too much work .

there are 2 drugs that i haven't tried but in reading seem to work very well, one is name brand requip extended release, not the generic, and the neupro patch. they are expensive even with medicare. but you never know, 100mg sinemet 3-4 times a day might work great for years. tremor doesn't always respond to drugs.


i suggest you buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK for a detailed description of how to figure out which meds work best and The Peripatetic Pursuit of Parkinson Disease
http://psychcentral.com/blog/archive...ever-heard-of/

fwiw i was diagnosed in 2001 at the age of 48. i'm still alive after taking sinemet.

[doydie]

Thanks for responding. When I wrote the comment about the Senemet, I hadn't read any comments at all on the board. I was just basing my thoughts on reading some articles. Yes, I will be getting some books. I think I need to go to a place like Barnes and Nobles that let you sit and look at a book before you decide you want it. When I found out I had MS, I bought tons of books and only a few were helpful. So i will sit in one of their easy chairs and browse through some before buying. But we need to see the doctor first.

[reverett123]

The usual statements about "nothing offers protection" needs to be qualified a bit. It should be said that "nothing has been shown to protect". Since it might take decades to show the latter to the satisfication of the powers that be, don't hold your breath.

IMHO one should look at the processes involved and tackle them. Oxidation. Neuroinflammation. Mitochondrial problems and so on. Make choices and take actions with this kind of info to guide you.

There is one drug in particular that the MS community has been testing and that you may be aware of - Low Dose Naltrexone (LDN) seems very promising. Our own RLSmith has been taking it for ten years or more and seems to be doing very well.

Originally Posted by doydie

Hi, I am a long time member of the MS forum. My husband had his annual physical yesterday, has been having some tremors in his hand and was told it is Parkinson. Needless to say I am scared to death. What are we to do, get matching mobility scooters?? LOL So what is available for meds other than Senemet which didn't look like a drug I would like

[reverett123]

Oh! I agree with soccertese about levo/carbo. Considering how much of it that I eat it is remarkably kind. And it leaves room for experimenting if you do your homework and avoid MAOIs and agonists, etc.

Originally Posted by reverett123

The usual statements about "nothing offers protection" needs to be qualified a bit. It should be said that "nothing has been shown to protect". Since it might take decades to show the latter to the satisfication of the powers that be, don't hold your breath.

IMHO one should look at the processes involved and tackle them. Oxidation. Neuroinflammation. Mitochondrial problems and so on. Make choices and take actions with this kind of info to guide you.

There is one drug in particular that the MS community has been testing and that you may be aware of - Low Dose Naltrexone (LDN) seems very promising. Our own RLSmith has been taking it for ten years or more and seems to be doing very well.

[soccertese]

Originally Posted by doydie

Thanks for responding. When I wrote the comment about the Senemet, I hadn't read any comments at all on the board. I was just basing my thoughts on reading some articles. Yes, I will be getting some books. I think I need to go to a place like Barnes and Nobles that let you sit and look at a book before you decide you want it. When I found out I had MS, I bought tons of books and only a few were helpful. So i will sit in one of their easy chairs and browse through some before buying. But we need to see the doctor first.

ok, do what you want.
i have also looked at tons of books and picked those 2. haven't been to a barnes and noble in a long time but i doubt they have many pd books. the first book is cheap enough used that i wouldn't hesitate to buy it.
if you are looking at alternative treatments, let me say that the internet is loaded with claims that this and that supplement/food helps, that getting l-dopa from natural sources is better, i'm sure the same is true for MS. When i was first diagnosed i scanned the internet daily for some magic bullet and tried a lot of things, chelation therapy, IV glutathione, 1200mg co-q10 and i still progressed. The one thing that i think might have slowed progression was vigorous exercise.
not everyone can do that but i have just seen too many people with pd benefitting from the social(mental) and health benefits of exercise and recommend it as part of your basic therapy. a friend of mine sees a neuro who says he recommends a drug regime that enable you to exercise and socialize, the benefits will far outweigh the side affects. that said, i suggest you also look for pd support groups and exercise programs, tai chai is highly recommended but so is dance, spinning, treadmill, weights. it's easy for a pd'er to recede into a shell cuz your're not your old self.

check out "pedaling for parkinson's"

[RLSmi]

Originally Posted by reverett123

The usual statements about "nothing offers protection" needs to be qualified a bit. It should be said that "nothing has been shown to protect". Since it might take decades to show the latter to the satisfication of the powers that be, don't hold your breath.

IMHO one should look at the processes involved and tackle them. Oxidation. Neuroinflammation. Mitochondrial problems and so on. Make choices and take actions with this kind of info to guide you.

There is one drug in particular that the MS community has been testing and that you may be aware of - Low Dose Naltrexone (LDN) seems very promising. Our own RLSmith has been taking it for ten years or more and seems to be doing very well.

Hi Doydie!
Yep, it's RLSmi. Rev said that I have been on LDN, but i've actually been taking low-dose dextromethorphan (LDDM) Both drugs are in a class called morphinans. I got the idea of using dextromethorphan from reading the research work out of J.S.Hong's lab group when he was at the National Institute of Environmental Health in Research Triangle, NC. All of his work was preclinical, animal studies, but he demonstrated that several morphinans, as well as at least one endorphin have powerful anti-infllammatory activity in mouse brain tissue studies at extremely low (femto-molar) concentrations. This group also conducted experiments using animal models of Parkinson's Disease demonstrating protection by DM from development of Parkinson's-like symptoms and loss of dopamine-producing cells in these animals.
Hong has since published numerous studies describing the powerful anti-inflammatory effects in the critical brain areas known to be damaged by inflammation by certain cells called glial cells.
Rather than continuing this technical rant, I will just say that my major motive for using DM instead of naltrexone was to avoid having to get a prescription, since DM is available over-the-counter in cough syrup. If you want more details regarding the history of my use of DM as a possible progression-slowing drug, I suggest doing a search of my postings on this forum going back the last ten years.
Robert

[reverett123]

I have done a little more experimenting and I am not certain that I am going further with it or not. Frankly, it is a little scary with othing to go on. But I will add what I have to the heap.

If you remember, I was following a hunch related to the extremely low concentrations reported in the earlier work. I set up a rather crude eperiment as follows:
a) I placed a single drop of DXM into a beaker and added 10 oz of water. I called this "Solution One";

b) I then placed one drop of Solution One into a beaker and added 10 of water to create "Solution Two";

c) Placed one drop of Solution Two into beaker and added 10 oz ofwater to create "Solution Three";

d) I repeated the procedure until I had created "Solution Six".

e) My first test had been of Sol One by taking a single drop on my tongue at bedtime. The result was stronger than expected and a little frightening. A general depressing of the CNS particularly respiratory function. It was alarming enough that I slept upright in bed that night lest I aspirate any vomit.

f) I tried again with Sol Four and still was uncomfortable.

g) It was only with Sol Six that I felt within a workable range.

So there you have it. May well be the most important thing in Western Medicine since moldy bread and we are the only ones who know.

It has parallels to Bruce Ames's work with methylene blue I think, the LDN, reported "step" effects of turmeric, and maybe others.

To the rest of you, unless you are really experienced with this kind of thing , I would suggest extreme caution. At a minimum start with a level of "Solution Ten" and have someone to keep an eye on you. Sit upright the first time too. Aspirating vomitus is a particularly undignified way to go.

[reverett123]

I put this in a different thread than I planned and will move it. Let's not hijack this one. I will fix it all up.

Originally Posted by reverett123

I have done a little more experimenting and I am not certain that I am going further with it or not. Frankly, it is a little scary with othing to go on. But I will add what I have to the heap.

If you remember, I was following a hunch related to the extremely low concentrations reported in the earlier work. I set up a rather crude eperiment as follows:
a) I placed a single drop of DXM into a beaker and added 10 oz of water. I called this "Solution One";

b) I then placed one drop of Solution One into a beaker and added 10 of water to create "Solution Two";

c) Placed one drop of Solution Two into beaker and added 10 oz ofwater to create "Solution Three";

d) I repeated the procedure until I had created "Solution Six".

e) My first test had been of Sol One by taking a single drop on my tongue at bedtime. The result was stronger than expected and a little frightening. A general depressing of the CNS particularly respiratory function. It was alarming enough that I slept upright in bed that night lest I aspirate any vomit.

f) I tried again with Sol Four and still was uncomfortable.

g) It was only with Sol Six that I felt within a workable range.

So there you have it. May well be the most important thing in Western Medicine since moldy bread and we are the only ones who know.

It has parallels to Bruce Ames's work with methylene blue I think, the LDN, reported "step" effects of turmeric, and maybe others.

To the rest of you, unless you are really experienced with this kind of thing , I would suggest extreme caution. At a minimum start with a level of "Solution Ten" and have someone to keep an eye on you. Sit upright the first time too. Aspirating vomitus is a particularly undignified way to go.