I have had pd since 1995. I have tried every new and traditional treatment a s they became available. DBS, Apokyn, agonists, etc. I recently (4 months ago) started chelation of heavy metals from my body(brain too) and infusion of glutathione twice weekly. The results have so far been remarkable. I would like anyone with experience as a patient with this treatment to offer their experiences or questions to me.

Hi Stuart, welcome. How have you done the chelation, through blood replacement - or I guess it's a kind of cleansing....I wanted to do this but my doctor was afraid of my having renal failure because of some possible undetected and underlying systemic weakness from either the drugs or the years with this condition (whatever its origin..)?
thanks,
Fiona

Stuart-
I would like to hear more, if possible. I assume you are doing an IV approach like Dr. Perlmutter. Seems to be a lot of positive anecdotes backing him.

There is some evidence for N-acetyl-cysteine as an oral route, but I haven't tried it yet.

As for the chelation, is it the EDTA (?) approach?

Thanks.

somebody enters this forum and touts the miraculous properties of intravenous glutathione. Judging from the fact that nothing has become of it, in terms of proof of principle by the medical community at large , i will bet my bonnet that it's really just placebo or a complete (maybe even dangerous, crab). And if you think chelation is "good for you" you will just lose trace metals that ARE NECESSARY for good health. Only rarely is chelation therapy a necessary medical procedure to remove toxic amounts of dangerous and /or unnecessary trace elements such as in cases of mercury poisoning or a condition whereby too much copper or iron is sequestered in tissue. WE NEED our trace metals for proper enzymatic functions.
The whole "Antioxidants and their roles related to PD" and other disease conditions is currently undergoing a closer look. Preliminary findings lend credence to the idea that many antioxidants are not involved in prevention of any disease conditions and indeed many antioxidant molecules are not absorbed by cells or are inactive in acting as antioxidants (or anything but molecular junk for that matter) in-vivo.
REmember- when we achieve something that actually works in cutting out PD symptoms to a great extent, and is repeatable by researchers , giving the same results in different labs all over the world, then such "eureka" claims can be taken seriously. My tack on IV- Glutathione; YOU-REEK-A

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Can we agree that the question is open?

1: Biomed Pharmacother. 2008 Apr-May;62(4):236-49. Epub 2008 Mar 14.

Glutathione and Parkinson's disease: Is this the elephant in the room?

Zeevalk GD, Razmpour R, Bernard LP.

University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical
School, Department of Neurology, Building UBHC, Room 405, 675 Hoes Lane,
Piscataway, NJ 08854, USA.

At least 2 decades have past since the demonstration of a 40-50% deficit in total
glutathione (GSH) levels in the substantia nigra in patients with Parkinson's
disease (PD). The similar loss of GSH in the nigra in Incidental Lewy body
disease, thought to be an early form of PD, indicates that this is one of the
earliest derangements to occur in the pre-symptomatic stages of PD. Oxidative
damage to lipids, protein and DNA in the nigra of PD patients is consistent with
the loss of the antioxidant functions contributed by GSH. Past clinical trials
that have used an antioxidant approach to treatment have used antioxidants that
might substitute for GSH but these have shown modest to little benefit. More
recent studies of the functions served by GSH in cells include in addition to its
well-known participation in H(2)O(2) and toxin removal, such roles as modulation
of protein function via thiolation which may control physiological and
pathophysiological pathways to include DNA synthesis and repair, protein
synthesis, amino acid transport, modulation of glutamate receptors and
neurohormonal signaling. These multifunctional aspects to the workings of GSH in
the cell would suggest that its loss perturbs many different processes and that
replenishment and maintenance of GSH per se may be the best approach for
preventing progressive damage from occurring. Despite this, few studies have been
directed at specifically restoring GSH, although, as discussed herein, its
unsanctioned use in PD is growing in popularity. This review will focus on
glutathione in PD; the various functions carried out by glutathione and possible
consequences of its depletion, as well as measures to elevate GSH in the CNS and
its use in humans. Consideration of how the CNS generates and handles the
substrates for GSH synthesis is also addressed with the view in mind that this
may provide insights into control and maintenance of intracellular glutathione.


PMID: 18400456 [PubMed - in process]

Ok, ol' cs, I follow you on the trace minerals thing. But I'm no chemist quite obviously, but isn't it that possible some of the pesticides and all those plastics that we thought were inert are having neurological impact, or just stressing us to the point or accumulating in our tissues to the point where they're having neurological impact?

Gee, my tv tells me, if you wear these pads on your feet at night you're all clean in two weeks! Are these the same people in charge of cures? That's a scary thought!

Along the same line - is it always me? lol have you had a colonoscopy lately?


paula

I'mfar from being some kind of biochemical genius, but it doesn't take much to be sckeptical about PD therapy theses days.
Those feet things. Everybody has dirty feet, try them on your stomach and see if they get dirty the first time.
You guys must think of me as the "spoiler", the greatest curmudgeon on this site, and you would be corrrect. When i first started to study cancer (albeit modestly) some 30 years ago, I could quote glowingly optimistic reports of "findings sure to become relevant soon" (in world renowned journals) that were sheepishly never heard from again.
I WANt to get better. I want to heal, i want YOU ALL to get rid of this curse, but I'm not seeing it happen. Cancer is different from PD because it can occur in nearly ANY part of the body, and thus has many possible etiologies; and some great work has occurred over 30 years in cancer therapy (for certain types of cancer, that are well understood and respond to discovered small molecules.
PD occurs in a very small area of the brain. It has been a refractory disease to all but dopa and a few agonists, and DBS. What gives? All that I know for sure is the front is stagnant (and not for trying); but I will maintain till the day i pass that PD needs cell replacement for a "cure" and "mechanistic understanding" for a "prevention". Simple as that. The one thing about PD is that we have two "parts" to the SN, which like kidney or eye or other bilateral organ disease, should be amenable to greater "play" in research. We only have one heart, and we have managed to do so much to prevent disease and to treat disease in this one organ.
My mantra has always been "cell replacement", why we still refuse to go there (despite known setbacks) is way beyond my understanding (and hopes).

We've read that in the cell replacement studies, they have found that the new implanted cells developed PD in post mortem analysis. This was recently, and disappointing. Some of the subjects' did not have this, but many of the subjects' were. They had no explanation for why one subject was affected and another not, other than to speculate that the subjects whose implanted cells appeared to develop PD had the implants in longer (I think 14 years compared to 9).

Our neuro who is the top PD guy in our town believes the cure will not lie in cell replacement, because, as he puts it: "something is making those cells die/stress out, and if you put in more cells, without addressing what is wrong in their environment to begin with, those implanted cells will just suffer the same fate", which was borne out in large part by the recent study discussed above. He personally believes the "cure", if you want to call it that, will be some a protein-related treatment, since the amyloid protein is mis-folded in PD patients.

In the meantime, the cell replacement therapy could buy time and form a treatment bridge until something better and more permanent comes along, and everything we learn about PD, positive or disappointing, can only help move closer towards a real cure where everyone who suffers can be helped.

i took iv glutathione twice weekly for about 14 months, ending this past january. i started taking it not long after my dx so my experience with pd symptoms and progression were limited. i am akinesia dominant without a resting tremor. since my iv glut perscription ran out my symptoms have definitely worsened, and i started on carbidopa/levedopa. this has helped but


i had traveled all the way to so florida and i was told ild have to make the trip again to renew my perscription. i have not yet found a qualified doc locally that will take the risk of perscribing the iv glut. i'm on the fence about it. i guess if i knew a doc locally i would start again right away. dr perlmutter is areal believer, taking it himself as well as giving it to his wife and children.

i am also frustrated with the absenceof news from the study being done there in florida that should have published by now.