our experience
 

my husband don was diagnosed with idiopathic PD 4 1/2 years ago. he has been able thru alternative therapies to avoid PD meds until about a year ago when he went on sinemet (1 3x daily - see below).
here are some of the things we have tried and a brief opinion about each:
1. glutathione i.v. made an initial difference and took it 2x weekly for several years. hard to say if it continues to work. we recently stopped all iv's to see why don's reaction had become shaky following them and didn't seem to notice any downside to not taking the glutathione. the original iv's were glutathione, then glutathione/magnesium/methylcobalamin/vit.C. for several years, he 'needed' this combination every third day. no one was ever able to figure why the high dose of c (50g) seemed to help but it obviously did. my own thought was that it acted as some sort of glucose and recently as he began to have the shakes following, it turned out to be the c...the very thing which had helped him for so long. doc's opinion is that his tissues are finally saturated and he doesn't need these large doses any longer.
2. hyperbaric oxygen - a real winner. the changes in the beginning were dramatic and lasted about 2 months. gradually, the effect was less and less noticeable and because it is so expensive and because don is the type who wants to hear the plane's engines and won't fly in a whisper jet because there isn't enough noise, he chose to stop it. i think it would be good to have it occasionally but we can't buy everything.
3. supplements galore. i can't begin to list them here but will send a copy of his list if anyone wants it. our son is a pharmacist so i get hundreds of those little bottles with easy open lids from him and organize a month at a time, labeling the lids with nos 1-6 so he knows what to take when. it is a pain in the neck (more like the back) but worth it. i am sure he may take more of some stuff than he needs but since there is no way to know, better to err on the safe side. the one thing i know that he will regress without is high dose vitamin e. we use one from purecaps and he takes 3000 units a day. less, and he is like the everready bunny winding down within a few days.
4. l-theanine to counteract depression. a wonderful little amino acid with no side effects, just a mood elevator.
5. we use the lab tests from Life Extension to learn what we want and then take the results to our doctor, who is both an allopathic internist and an alternative doc. he checks the lipids, adrenal function, thyroid and metals from his office.
6. low dose naltrexone....a wonderful thing. don has now been able to weather this economic storm, tolerate our children's indescretions, my driving and extensive travel etc. - all without zoloft. you can google LDN.
7. for more than a year before he went on sinemet, he took Zandopa, the standardized, FDA approved but not marketed here yet, extract of mucuna pruriens. it comes in powder form and tastes like dirt so like a good wife, i put it into capsules while watching t.v. zandopa can be used a long time without negative side effects and it has worked very well for don. now,he takes 1/2 dose of zandopa with 1 (instead of 2) sinemet and that seems to work well for him.
8. he has had umbilical cord stem cells. this was a very confusing scene since they theoretically should not have worked for several months. he immediately had 1/2-1/3 remission in 19 symptoms but they eventually, over the weeks, returned. a medical mystery unless the 'live' cells they injected did the deed. no one can fathom why this happened or how to get it to happen again. the stem cells were give in a solution of dmso and mannitol, both of which are super anti-inflammatories and anti-oxidants. all i know is that he changed dramatically and got an appetite which wouldn't stop for a couple of weeks. go figure. well, one good thing was that two months later, he began to look so rosy and healthy in the face that people would stop him and ask if he had 'had a little work done'! i suspect the cells helped generally, but not specifically for PD.
9. he has had treatment by jack garvey in st. augustine,who not only believes that all illness comes from bacteria, viruses or chemicals, he also has a machine which will kill the bacteria and viruses. it takes months to get an appointment and i believe it is efficacious. the remarkable thing was that as don's little demons were being executed, he stopped needing his meds. this lasted a day or so after treatment and i don't think we followed the aftercare directions perfectly. i think don would have done well to have returned for a follow up since he was so loaded with bacteria and viruses but it's the old whisper jet thing again. i was treated and i went for follow up and i think it was quite successful.

10. he has had EECP and that has given him more energy, improved his circulation considerably (his hands and feet were cold when he began but are now normal). thank god...something which was covered by insurance!

11. he is now using an alpha-stim machine for anxiety and insomnia. it almost takes a 2x4 to keep him asleep, even with tryphtophan, melatonin, niacin and valerian. i thing the alpha-stim has helped in both areas.

don is not typical in that he cannot exercise the slightest bit too much without paying a severe price. for two years, this was critical (he could hardly bring in a bag of groceries without having to lie down for a rest) but he has slowly improved. still, when he does the slightest bit too much, he stiffens up and even the dopa doesn't seem to help much. i suspect that he has some sort of metabolic deficiency.

it does appear that don is able to go longer without his meds and that his depression is under control. i think this has to do with the LDN and the alpha-stim.

we are currently considering the permanent acupuncture guy in spain. since that will be a big ticket, we are awaiting some personal testimonies.
hopefully, we will hear good things.

i think this has covered our experiences. since many people can't just go all over to get help and are often timid about trying new things and because so many things we have done are not covered by insurance, i thought some of you might be interested to hear from someone who has been there, done that. i hope that some of what we have done will answer some questions for you.

Excellent report!
 

Thanks very much. It is a great help to know where others have been. For myself (Symptoms 1992, Dx 2000), the biggest things I have found are alpha lipoic acid, acetyl-L-carnitine, red panax ginseng, and, most recently, potassium. Probably the most encouraging self-experiment conducted in the group is Ron Hutton's experience with curcumin. Ron has dealt with PD for years but gets along well with 100 to 200 mg of sinemet as of this morning. I don't know the numbers, but he was considerably higher in times past. There's a lot of good research behind it, too.

Your account pointed out something that seems common - new things work at first but then fade. That is a strange pattern to observe across so many individuals and so many substances. It is as though we shove a giant pendulum aside only to have it swing smoothly back into its path. That makes me think that there is a endocrine component at work. There is a concept called "homeostasis" which I translate as "balance" or "stability" and that is the constant goal of a living system. Just where that state falls is determined by "set points" which allows you to adjust to, for example, being born into a war zone. LIfe events can change those set points as well. Unfortunately for us, our set points are set wrong and we try something new in the way of symptomatic relief and get good results. But the underlying process gently pulls us back toward the set point. If we can move it....

thank you dear one,
 

my question to you is - what does he eat?
does he eat salmon? - etc, do you keep track of his pH balance?
you are a great spouse...wow!

DBS-STN in 2002. 3-4 25/100's per month, multiple vitamin. 60 mgs Celexa daily. 10 mgs Coumandin/daily for clotting disorder.

Charlie

Questions
 

Hi Scrumptious,
Thanks again for a great post.
Could you give us more information on Jack Garvey and his work. I did a search but could not find a single publiaction mentioning him.
Also, how old is your husband, and what was/is his occupation?

Ron

Sinemet - the inevitable
 

Your husband and I were diagnosed at approximately the same time ... this month it's been 5 years since I was dx at the age of 43.

It sounds as if your husband was able to hold off on drugs until some of the symptoms couldn't be controlled any longer by alternative medicines, etc. Because I don't have to work, I've been able to work with different meds, too, to see what works and what doesn't. This is a luxury some can't afford which I try not to take for granted.

In other words, Michael J. Fox felt he HAD to hide his symptoms because he was an actor and made a living that required he not shake, freeze up, etc. And so, from the beginning, he went on high powered drugs, including Sinemet, to totally mask his symptoms.

Now I'll be the first one to admit that I'm fairly ignorant when it comes to drugs and their side effects, but I can't help but wonder if someone holds off on Sinemet, does it prolong the inevitable?

As for me, personally, I'm scared to death to begin on Sinemet and have been usiing Mirapex, Artane, Baclofen, and Wellbutrin with great success. When the time comes, I'll take Sinemet.

My question to you is if your husband has tried different drugs like I take and/or why did he go right to Sinemet?

Thoughts encouraged from one and all!

Jack Garvey
 

[QUOTE=Ronhuttona great post.
Could you give us more information on Jack Garvey and his work. I did a search but could not find a single publiaction mentioning him.
Also, how old is your husband, and what was/is his occupation?

Ron[/QUOTE]

Ron, I saw Jack Garvey when he was in NC - before he moved to Fl. I went to clear up any residue following my bout w/ Hepatitis A. I did what he said, got zapped, ate right, etc. Upon return a month or so later he pronounced me 1 in 100 in terms of response, fit as could be. This was about a year or 2 prior to PD symptoms. Among other things I must conclude that PD is neither viral nor bacterial. SOrry I have no contact info for him...but I think he was in St. Augustine, FLa. Ibby