Hello everyone,

I feel a little guilty, as I'm one of those forum lurkers, never posting until today, but reading and monitoring posts for a couple of years now. I don't have PD (at least, not yet, our neurologist says if we all lived long enough, we'd all get it) but my husband was diagnosed with young onset two years ago this month. I hope I am not intruding into an exclusive community by posting here, and if I am, let me know. I just wanted to share that my husband is going to see the doctor mentioned in another post (Izor) who is doing something similar to this at the end of March. Hopefully he will let us try the electrical acupunture that his practice has just started experimenting with for PD. I will let everyone know how that goes. We are all for any sympomatic relief that does not require prescription drugs as those have, as yet, given us as bad a side effects as the various disease symptoms itself.

We have been interested in mucuna for a long time since we knew sinemet was inevitable, but like most wanted to minimize how much we had to take to be functional. My husband still works every day, and the sinemet was a huge disappointment to us. We had read so much about that "honeymoon" but never got it. My husband found that if he ate ANYTHING at all, the sinemet was barely effective (of course, the side effects were still 100%! Odd how that works, you get greatly reduced sympomatic relief, but with all the cons of the med...). And not eating all day wreaks havoc with your blood sugar, which the brain needs to function properly, it's a horrible cycle. He could only go a few days without eating all day until dinnertime, and was miserable. So we went cold turkey (not a wise move, I have since learned) and got off sinemet, mirapex, and azilect on a saturday day, switching over the mucuna.

The first day my husband felt great, the second day, good but not as great, and the third, not good. We think he might have been on his "off med" honeymoon. By Tuesday, he was in pretty bad shape, and had one of the worst nights of his life (he also has RLS, we have learned). So on Wednesday he switched back to the sinemet out of desperation (he takes 100/25 three times a day). My husband found the following benefits to mucuna, in the short trial he did:

-faster onset
-smoother onset
-helped with his tremors more than sinemet (he is tremor dominant)

The disadvantages were these:

-impossible to be taking at work where he has told no one of his situation
-variable effect since there is no carbidopa to maximize the benefit and even the most benign of liquids seemed to minimize the effect of the mucuna
-messy-powder spilling all over when those hands are shaking!
-Rick is right-that stuff STAINS like you wouldn't believe, so you really have to be careful mixing it up

We are going to ask our neuro for an Rx for lodosyn which I understand is plain carbidopa, together with the dosage to combine it with the mucuna. Then we'll experiment with that combo, if our doc will prescribe it for us, and see how it goes. I am also going to try to find mucuna tablets or capsules, to see if they are as good or better than that powder-I agree with other posters, it just is not practical to be trying to mix those elixirs throughout the day, especially under your desk! I don't know why the Zandopa folks don't package their mucuna in a capsule, it would be so much easier for everyone. We would actually be willing to pay a little extra if they would! Maybe they're forum lurkers too and will read this and change their packaging.....

I'm very grateful for all the posts we have gotten the benefit of the last few years, you are a great group of people and this forum a wonderful community.
I am very optimistic about the future for those afflicted with this horrible disease, and their families, as we all suffer, just in different ways.

Every day is a gift, may yours be a great one!

You might try mixing it in a cup of yogurt and taking it for lunch. And if there is a compounding pharmacist nearby you might get them to cap it for you. But that is a lot of caps to swallow.

Welcome lurkingforacure..Im glad you decided to join us!

I'm not sure, if this will help or not. I found in my my experimentation with mucuna and sinemet, is that you can't dramatically change your meds (whatever it might be) from one day to the next. You really have to make changes gradually (weeks not days). These are all powerfull drugs, his body needs time to adjust.
I know of couple PD'ers taking Lodosyn & mucuna together with great results. I live in Canada, and Lodosyn is not available here, otherwise I would use it instead of sinemet.
Have him keep a detailed record of what, how much and when he takes these meds. Also when it kicks in, how long it lasts. I find, for me, mucuna works best on an empty stomach.
I was diagnosed with pd 7 years ago, been taking mucuna and a little bit of sinemet for 15 months now with terrific results.

Take care and good luck. Max

Thanks for the input...strange, I understood that lodosyn WAS available in Canada, and easier to get than here in the US, it was just very expensive. I can't wait for him to try the mucuna again...our neuro today actually told my husband to get back on the azilect and mirapex (he had gotten off of both when he got off the sinemet to try the mucuna, then came back to only the sinimet...the agonists have lousy side effects for him and little therapeutic benefit, so we decided to ditch them, but our neuro disagreed, and we have to sort this one out...) Apparently our doc's theory is that it is better to keep a stable level of drugs in the body than to take a mirapex "now and then" as my husband put it, when he needed it. Anyone have any thoughts on taking mirapex on an "as needed" basis? We are reluctant to take more drugs than really necessary, our doc seemed to think the low level of mirapex he was recommending (.25mg 3 times a day) would be enough in the system to allow for an "as needed" 1mg pill if my husband needed it to get to sleep or to help his tremors during particularly stressful times. Anyone else do this?

Thanks everyone for the nice welcome. The folks on this forum are so informed and up to date, two neurologists we have now been to had never heard of naltrexone until we told them about it! My husband takes this every night, not sure if it's helping because he has definitely progressed in the 24 months since diagnosis, and we began taking it pretty much right away.

I forgot to mention that my husband uses a 14mg nicotine patch every morning, it works wonders. We laugh because he has never smoked a day in his life, yet here he is now, taking in the equivalent of heaven knows how many cigarettes a day! There's a bit of nauseau and dizziness at first, but it really helps his mood and tends to smooth his day out. Be careful if you do this too, though, since if you skip a day you can have nasty withdrawal (just like a smoker). We got the idea from the study done on mice at the Parkinson's Institute, as well as the fella in Vermont who has done lots of work with nicotine and PD. I am surprised that I have yet to read on any forum that any PWP is using the patch, it sure helps my hubby.

We are also sticking with the ginseng. Rick, my husband was wondering what are the brands and dosages of the supplements you take, listed at the bottom of your posts? If you don't mind sharing, we are intrigued at your improvements and are wondering if we could duplicate them by taking the same supplements as you. Thanks, white rat!

I am still learning how to navigate through the forum, it's one thing to lurk behind the keyboard, and quite another to actually follow rules so that you can post! I hope soon that I will have figured it all out, and can add those cute icons and pretty pictures that the more sophisticated posters use!

Have a great evening!

how many? I was figuring one teaspoon is about 7.5mg, and you need two of those, roughly, for each sinemet 100/25...so two teaspoons put into capsules-how many would (gulp, COULD, that be?) I guess it translates into how big a capsule they use, but when you capped it yourself, how many capsules did you need or use for one teaspoon of mucuna? There ARE too many pills, and so little time! Thanks.

1) One 00 capsule holds one gram.

2) My favored brand is Jarrow - best quality available with NOW brand second.

3) Your neuro is right about drug levels. The concern is that the roller coaster effect keeps things unstable and increases damage. The daily goal is to get above the level when you turn on and stay just above that line. That doesn't mean you take a bunch of drugs, but that those you do take need to be managed that way. Fairly simple if just taking one drug, hard if two, three you are guessing.

BTW, let me insert a commercial here- there needs to be a software solution to determine the optimum dose pattern for multiple meds. And there is, My French friend has one that she developed afew years ago and it works great. But she has no way to move it forward and is quite ill herself. if anyone knows anyone, please let me know.

4) As to duplicating my regimen, I don't know if that's a good idea or not. You have to make that decision. And be aware that I do have problems so no magic bullet. Yet.

What I will tell you is not so much what I take but more WHY I take it. That will put you in a better position to make decisions. But it is late and bed beckons, so I will do it tomorrow. But the main areas are stress, inflammation, oxidation, and mitochondrial function.

Or at least awake. So to continue-

This may get a little wordy but I will try to contain myself. Like I said, it is better to think of the areas that must be dealt with rather than what I'm taking because you might run across something better for that particular niche. Also, there is a top level over all that includes preventing it from getting worse, improving function at whatever level you are at, and getting better. I swear that nothing is simple about this darned disorder. But to begin-

Stress- This and inflammation tie for Number One. It causes it, makes it progress, interferes with function, and stands in the way of getting better. And there are two kinds of stress - acute and chronic. Acute will mess up function but chronic fills the other three slots. It is impossible to overplay the role of stress in modern society or in PD. Lifestyle change is the obvious need, but we are like a bunch of lemmings trapped in our jobs and so on. There are things that can help, but removing as much of the causes as possible is even more important.

My choices here are ginkgo and ginseng. The research supports the first for acute stress and the second for chronic.

Inflammation- This is also Number One. Stress causes inflammation and inflammation causes stress. In addition, our immune systems are messed up in a way that causes constant low-level inflammation. The chemicals involved fill all four slots as well.

Ginkgo and ginseng both help here, as does green tea extract. The essential fatty acids also help. Also, it is best to avoid corn syrup (which is in everything) because it fosters inflammation to.

Oxidation is always a factor. Alpha lipoic acid is my choice here for half a dozen reasons. It seems to synergize with acetyl-L-carnitine for even more action. And the L-carnosine seems to add in as well. In addition to oxidation, they seem to address the problems of mitochondrial failure. The mitochondria are the tiny generators in each cell. Everything depends on them. There is also evidence of some chelating or removal of heavy metals.

Finally, there is the area of repair or neurogenesis. Even this comes in a couple of "flavors". There is the idea of growing new neurons from stem cells. That seems to be tough. But there is also the tactic of persuading the remaining neurons to grow new branches or dendrites. This seems much more achievable, especially if the other four factors are addressed.

I suspect that the ginseng has done some of that. There are others as well, but I am not ready to talk about them because I don't know enough yet.

There is at least one other that I am not taking at present but that I will return too later, and that is turmeric/curcumin. It does wondrous things in all the categories. But I ran into a problem due to my own infection with the ulcer causing bug H. pylori. Turmeric kills it very well, but the dead bacteria are poisonous to many of PWP. Very poisonous. Could put you in a wheelchair. So it has to be approached carefully. And if you get a nasty infection of some other sort and take antibiotics for that, it can cause the same problem with no one knowing why. So, if your husband starts a course of antibiotics and his PD starts getting worse, take note. There is a breath test available, btw, that will tell you if HP is present ahead of time. If so and you get rid of it your meds work better, too. There is research showing rhubarb root to be very effective at removing HP, but do a search on this forum for HP before you get into this. These really are dangerous waters so do your homework on this one.

Hi, and welcome to NT. I know your husband is greatful that you take such an active role in his illness. It is always so amazing to me when the spouse takes such a big interest and proactive role in investigating new things, etc.

Good Luck