I would agree with the B12 thing. It is often missed in ordinary routine testing, so is worth getting done anyway. There seems to be a potential for low levels if you are on ldopa long term. The more I find out about it the more relevant it seems, so supplementation may be useful for you. What is exceptionally interesting is that there is no 'normal' level, there is instead a range with a big variation, open to interpretation by individual doctors, and different guidelines in different countries. You can test within the low normal, and (on people whose spinal and brain levels have been tested) the levels can be very low in CSF and brain fluid. They are only just finding out about B12........

This is a good site to find out more: http://b12d.org/

This is an old but good video, don't worry about the controversy, this guy is now regarded as a world expert.

http://www.youtube.com/watch?v=lXx7u...eature=related


I think you are unlikely to find a neurologist who goes back a real long way with PD, prior to ldopa many people with PD were treated in psychiatric units rather than neurology, in the US and in Europe.

I've been taking 1mg of liquid sublingual methylcobalamine for about a month now. I stopped taking it for 10 days because I was having a blood test for various things including B12. I haven't had the results yet but the doc said everything was normal - I know their concept of normal is more generous than a nutritionists. I'm also taking curcumin, green tea extract, vitamin D, B-complex, Osato Immun'age fermented papaya (the stuff the pope supposedly took) and fish oil (when I remember). I've started juicing wheatgrass, ginger, kale, spinach, carrot, celery and apple which makes me feel pretty good.

Do you think I should up the methylcobalamine to 5mg a day?

Thanks for all your comments...

Trixiedee

Trixiedee,

I am not on meds any longer, but i have a problem with b12 absorption from food. My lowest b12 was about 146 and that put me in a terrible state. I can get my levels up to about 900-1,200 by taking 5mg sublingual methylcobalamin. I need to stay at the higher end of the spectrum or i feel lousy. My kids have the same trouble.

My B12 levels from my blood test was 749pg/ml which seems pretty high to me. I stopped taking it 10 days before the test, would some of it still be stored from before that?

Trixiedee

Trixiedee,

I would think your test results reflect the supplementation. I don't think your levels are too high at all, especially for any of us here with neurological issues. Besides, I respect the levels that the Japanese consider optimal, rather than the european norms which i consider dangerously low. MrsD may have expert advice on the ranges here?

I have been taking pramipexole for 9 years now. It has side effects but these are compensated for by the benefits for me. Dop ags are less likely to cause dyskinesia than ldopa so its not all negative.

Neil.

I happened to run across this amazing little site "What's Driving Parkinson's?" It is a King's College affiliated PD "think tank" but unique in sense they believe and can offer convincing evidence that PD results as chronic, untreated bacterial infection in the gut. They do look at the disease and claim to treat the whole person. Even better, one our NT regular posters, Ron Hutton has been treated there with improvement as result. I bet if you PM him here, he'll likely be able to give you more information about their treatment approach.

This is a link to Ron's testimonial; from there you can explore and see if you may want to get involved.

Hope this leads you to more hollstiic care; I figure even if nothing materializes treatment-wise it will at least be refreshing to talk with scientist who see this as systemic and who have gone way beyond dopamine in their thinking.

Laura

Hi Trix,

Your doctor "insists" that you add an agonist and (despite his undoubtedly extensive 24/7 parenting with PD experience) thinks you're "mad" not to? Oh, no, no, no. If he thinks this is an easy decision, the man is a fool. If he thinks it is his decision, he's an idiot. Your body, your life. You're the CEO; he's the paid consultant. His recommendations are for you to consider, adopt and discard as you wish. You don't need to worry about him. He'll cash the check either way.

He sounds arrogant, condescending and emotionally tone-deaf. Worse, he sounds like the most he has read lately on agonists came from the manufacturers' marketing departments. So, if you decide to keep him, just keep in mind my mother's response when friends would compliment her on how great a husband my dad was. She said, "Well, they don't come out of the box that way!" In other words, some assembly may be required. I think of it more as house training.

There is no evidence that agonists prevent dyskinesia. Your doctor has no way of knowing whether you will get dyskinesia, severe or otherwise, nor when. He has no way of knowing whether an agonist will help you at all.

So, if you are feeling adventuresome and want to give it a whirl, go for it. Titrate slowly. Memorize all the possible side-effects and share the list with your best friend or husband so you can both be vigilant. Get some coverage for the kids during the first few days. Don't drive until you are sure about what affect the drug is having on you.

From my experience on Requip XL, many of the initial side-effects may subside fairly quickly. Some may not. If you find yourself developing any impulse control issues, as I did, tell your doctor and titrate off the drug, the sooner the better.

If you're not up for pharmaceutical roulette at the moment, don't let your neurologist push you into it. There is no rush. You can always tweak the levodopa dosing schedule and consider switching to Stalevo to smooth out the on/off stuff. If you're still moving, the levodopa honeymoon is not over.

Don't think about 40 years from now. How many 85 year olds have you met who were diagnosed in their 40s? We're going to be buying Mike Fox a beer at St. Peter's Pub laughing about all the stupid **** doctors actually said us on earth. If we do make it into our 80s, treatment options will be completely different. Maybe even a cure!

Good luck!
Rose

And to Rose's wise, wise words can I just add the following. I was six months on Mirapexin when it triggered a full blown psychosis. I know people who were on it years when some of the typical 'side' effects showed up. So I would urge extreme caution. Personally I think nobody should be on agonists, they are just a filthy drug and there's no predicting who is going to run into serious trouble on them.

I am sorry for sufferers of PD who cannot tolerate agonists or who suffer from obsessive behaviours, but I feel somebody should inject a positive spin into the conversation.

I was diagnosed a year ago. My right hand had a mind of its own and occasionally the "tremor" was a violent shaking. My doctor put me on amantadine (max dose) with no negative or positive effects so he added 2mg of mirapex (.5mg 4 times a day to go with the amantadine). The result was immediate. Within 48 hours my tremor settled down. It still appears every so often, especially when I am under even minor stress, but at least it no longer bothers me.

Had I read about the horrors of DA's before being prescribed mirapex, I might have declined them. My doctor did warn me that obessive behaviour could result but I took a chance. Thank goodness I did. I have not had any side effects whatsoever (with the possible exception of tiredness, but I take a 15 minute nap and wake up refreshed).

Who knows what the future holds for me? Maybe the mirapex will lose its effect. Maybe side effects will occur but I, and my wife, will be on the alert for them.

So for some of us, a DA is the answer, for now.