I, too, would not exist without l-dopa, but I do think it is not used properly. For one thing, if it does do some damage in the course of doing some good, should we not be taking preventive measures such as antioxidants along with it?

For another, when we start ldopa we are cautioned to avoid protein, amino acids, some B vitamins, etc. These are the very things that the body uses to make its own supply. Since unused capacities tend to atrophy, taking that first tablet is a momentous decision that is not fully explained to us.

I believe that part of the problem comes from an unconscious view within the medical community that PD is an old folks disease and that if one can be kept functioning for 20 years, then some other ailment will solve the problem. That view breaks down quickly when one is a 30-year old looking at a tremorous hand.

We need (and are in the midst of) a complete reexamination of PD and even, as Dr. Langston suggested in his essay, may need to rename the mess and start over with open minds.

"For another, when we start ldopa we are cautioned to avoid protein, amino acids, some B vitamins, "

avoid taking simultaneously. not stop taking. aren't you describing a situation that has to be managed with many drugs, namely a drug to food and drug to drug interaction? like not eating grapefruit within a few hr of taking some meds?

aren't you just referring to disease management?

i'm not absolutely sure but i think the problem that i see for companies developing new pd drugs for YOPD'ers is the FDA won't approve them unless the work much better than the current industry standard. so a new dopamine agonist has to be better than mirapex or requip.
i was in a phase3 trial by PHARMACIA for a new agonist called sumanirole. in the entire county where seattle resides they FOUND 3 VOLUNTEERS. The 1st part you got sumanirole, placebo or requip. that progressed to the open labell trial where everyone got to dose up to an effective dose of sumanirole. my pd was very mild but the sum. worked for me with no side affects, in the 1st part i assumed i got requip because of the side affects. what happened? the trial was cancelled. no explanation. PHARMACIA had been bought out though. it's likely they could not prove a big enough improvement over requip. that's another problem with getting fda approval, the difficulty in measuringpd symptoms. no lab tests, for drugs treating symptoms it's all subjective. thus for small diffferences you need a lot of subjects, very tough to do.
neurologix implied that for their future phase3 gabba gene therapy trial the FDA might require them to go head to head with DBS. it took 3years to get phase2 results, the last of the 44 phase2 subjects was treated 8 months ago. imagine the difficulty of finding DBS candidates along with finding those that will risk brain surgery and gene therapy. quite a challenge even in a perfect research world.

blame the drug companies all you want. i think some blame goes towards the FDA, the fact that it's hard to find candidates for clinical trials because sinemet works so well and it's very difficult to stop taking your current meds to try something that might be better. i'm personally amazed at the amount of pd research going on right now. ldopa patch, azilect, rigotine patch, numerous phase 2 gene therapies, lots of phase1, improved DBS's, spinal cord stim., electromagnets. sure it could be better.

Great, Jak. Welcome to our nerdy group of PD misfits. If you seek a real discussion on our limited choice in pharmaceutical treatments, then you may want to search the archives. We have pretty much exhausted them all. Our latest row was on Mirapex vs. Sinemet in a thread titled "The Agonist of Defeat"

Beyond that I am not sure what your purpose or intent is here. I find it odd that one would keep referring to the same "free" report on the insidious, pernicious levodopa in a forum where most people have had PD for a few years, if not decades. Clearly, most then here are on levodopa therapy. How does continually throwing an alternative treatment that requires one to be l-dopa free have any benefit for most here? There is a Young Onset forum at the National Parkinson Foundation site that might really benefit from your viewpoints. Quite honestly, this all seems mocking in nature to the many good folk here who no longer have the luxury of choosing to avoid levodopa for as long as possible. Most of the neuros in the US do not see their role in advising us on meds like this. Has your neuro had a frank discussion with you regarding when to start levodopa therapy?

Again, if you search the archives, you will see that there are people here who have participated in the recovery plan and they take <gasp> levodopa and mucuna pruriens (plant based levodopa). I really am not sure how anyone would be able to avoid dopamine replacement therapy if one does truly have PD. We may have dormant cells and we definitely have plastic brains, so some level of endogenous dopa production occurs in us, but not enough to keep up or overtake the disease, so if this were possible people would not be traveling to Germany for stem cell treatments or be here defending their need for levodopa to function.

You have stated several times over that levodopa is toxic. Check. We get that. In the spirit of moving along the discussion, what else do you want to say or know about this drug? All drugs are toxic at specific levels.

May I ask in the absence of any medication, what sort of plan you and your neuro have worked out? Silk pajamas to help you turn in bed at night, weighted utensils to help with tremor...is there are a plan or do you plan to wait and see what adaptations are needed?

We have a wealth of info available here.

Laura

I also blame us for not getting our butts into clinical trials. However, there is some sort of obsession in having dopa naive PWP in trials- pharmas only want the mildest of PD manifestation in their trials. They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?

Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?

There are many more potential better treatments than dopa stimulation. One vastly undertargeted area is Acetylcholine antagonists and allosteric modulators. The latter by Addex has huge potential as it controls dyskinesias. If I am not mistaken these might still be tested against agonists because the purpose is to compare efficacy not simply to improve agonists already on the market. Does anyone know if treatments targeting other receptor points are tested differently? Or do they all have to be in the same treatment family?

Laura

How about a registry of treatments that promised miracles and then just disappeared. Not disproven, just never heard from again? Sort of a "What ever became of...?" list.

Methylene blue?

"They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?"


likely for the reasons i mentioned, lack of enough willing subjects needed to prove small statistical improvement to FDA - btw, due to continuous progression very difficult to measure pd "improvement" WHEN patient getting worse from normal pd during trial - not like diabetes, difficult to get fda approval, recruit neuros, elderly may not drive so can't get to trial, have other diseases that may interfere, side affects more severe.
tough to work with elderly on any non-life threatening chronic disease and get also get FDA approval. seems more gene therapy, stem/fetal cell work going on, might be discouraging more drug research - why develop drug with minor affect when 3-4years gene therapy?
that said, what about ldopa/agonist patches, ldopa pump? azilect, extended release mirapex/requip?

Jak, can I just back you up and say I feel exactly the same as you. I've had PD symptoms for 8 years but only just been diagnosed. I believe PD drugs cause people to deteriorate faster. I don't judge anyone for taking them but right now I would be acting against my gut instinct if I took them. I don't understand the hostility directed at people who don't want to take meds. We should all be supporting eachother to do what feels right for ourselves. As you are in Australia have you heard of John Coleman? http://www.parkinsonsrecoveryprogram.com/
I have read his book and it rings true to me.

Welcome and gidday mate

Trixiedee

Maybe because we feel that salt is being rubbed on an open sore? Tough luck SUCKERS???

Laura I work with Doctors all the time. I see pts on steroids for 15 years. I see the disease resulting from the suppressed immune systems of these pts as they keep on representing. One day in the future people will look back like we look back to the early 20 century and shake their heads at current standards. Its not that these Docs are trying to make more bussiness, its that even doing the best they can the results are poor. You can extrapolate that to any field in health.

They dont even know the cause of PD. Maybe dopamine depletion is the result of PD not the other way around.

Jak

Aw, thanks for opening the door a little wider to facilitate discussion. Now that I understand that one of the things we're looking at with meds and levodopa is 50 years of stasis, I can say I am in full alignment with you there on our woeful current standards. Why push to produce better, more sophisticated treatments when we keep our business or research mojo going with the status quo. Monies will continue to pour into pipeline "developments" that never go anywhere, while patients get older, always focused on that ever elusive "cure". We all know that a cure is only in the patient's best interest. It's rather an easy, little status quo cycle to keep going.

Do you find it odd that your neuro would give you a possible PD diagnosis after just examining your MRI and a left hand tremor? I am just comparing to diagnostic standards here which are sorely lacking. I was pegged for six years with Essential Tremor as I didn't have much else going on. I thought that Neurologists usually required the presence of at least two cardinal signs of the disease, if not three these days. Aren't you wanting more evidence that this is indeed PD? In its early stages, PD looks like many other, more benign conditions, so I am really astounded that your neuro would leap to PD with only one symptom.

You must have pretty sophisicated MRI there. I am fascinated because I have never been convinced that my tremor is Parkinsonian as I have a family history of benign familial tremor. My MRI was simply studied to rule out atrophy and MS (no mylenation present). This is the first I have heard of a tremor being identified via MRi presence of infarcation. I do know that researchers do not even know for sure what pathophysiology is involved in PD tremor, so that is great they can tell you with some confidence that they can make some direct correlation.

Finally, what makes you think PD is autoimmune? Is this based on what you see in your work environment?

Just to clear things up.. I did not or do not judge anyone for whatever course of treatment or non-treatment they choose. I only sought some clarity as things seemed to be rather confrontational all the way round. I, for one, would love to have some regular contributors who are med free, i think it will make for some great points of comparison down the road.

Thanks for clarifying, Jak.