Medications of Parkinson’s Disease or Once Upon A Pill:

[beehive23]

Medications of Parkinson’s Disease or Once Upon A Pill:

Patient Experiences With Dopamine-enhancing Drugs and Supplements

Dr. Janice Hadlock, DAOM, LAc

Raja Books

published 2003, 639 pages

This book is an in-depth look at Parkinson’s disease medications and the brain chemistry of Parkinson’s.

Parkinson’s patients using L-dopa, dopamine agonists, MAO inhibitors and other dopamine- enhancing drugs and supplements were closely studied as they participated in a four-year research project sponsored by the non-profit Parkinson’s Recovery Project. The unexpected findings of this project have led to an entirely new hypothesis of how these poorly-understood drugs actually work.

happy reading. hang tough.

[WinnieThePoo]

That would appear to be an entirely new understanding 17 years ago. Quite a lot happens in the PD world in that time

[LAJ12345 in reply to WinnieThePoo]

Having said that I feel it ties in exactly to what I feel is happening with my husband having just started on levodopa. What seems like not enough probably is actually too much. She says initially too much gives you dyskinesia, then even more makes you freeze, and that seems to be what happens to him. Each dose during the day drops back over it’s half life to a rising baseline until at the end of the day it is too high, then the baseline back drops over night and resets. So we thought it was too little and he was getting worse! But She says it is actually a side effect of being over medicated. You have the drug effect and the actual disease. But most people think the side effects of the drugs are the disease.

And it ties in with what the product specialists at Hardys say happens coming off antidepressants after starting a multi nutrient. It is also similar with what seems to happen with the people thiamine helps. They take it a while, they repair, then it becomes too much and they feel worse but the worse feeling is the drug or supplement over medication not the symptoms getting worse. When you think about it it makes perfect sense.

She thinks once you start on a dopamine drug the baseline is reset lower so even if you are healing the original cause of the PD it is difficult to get off the last of the levodopa. It takes 10 weeks to reach equilibrium so the temptation is to take too much when starting as it doesn’t appear to be working at first but this can build up to too much over time.

[Andrac in reply to LAJ12345]

That’s precisely what I saw in my wife and when they upped her dosage to 2 pills 4 times daily the real problems started.

That’s when we stopped it cold turkey, she said that if it killed her at least she would be free!!

[ElliotGreen in reply to Andrac]

Just a warning to other people: IT CAN BE A VERY BAD IDEA TO QUIT LEVODOPA COLD TURKEY. It can lead to bad side effects or death. Janice Walton-Hadlock and conventional scientists agree upon this point. If you want to come off of it or reduce your dosage, the advice is to taper it slowly.

[beehive23 in reply to ElliotGreen]

Totally correct IMO....i use the PDR to titrate offf on anything. (physicians desk reference. cheers!

[Tonia1952 in reply to Andrac]

How is your wife now?

[beehive23 in reply to Tonia1952]

i have not seen or spoken to my wife or daughter for almost 3 yrs now......i do get emails from debt collectors for her so i know she is in debt thats it.

[Andrac in reply to Tonia1952]

She is much better on her feet, not shuffling around and no falls since July.

the Cognitive Impairment still screams ahead at Flank Speed and really depresses her. The Memantine and Aircept so far have proven to be 4 additional tablets she takes per day.

She is now talking of going back to her workout regime 3 days per week providing there won’t be any setbacks.

We have made many trips through the local area and country side and so far so good.

Thanks for your asking.

Bill her mate of 49 years and Care Partner

[Godiv in reply to LAJ12345]

I really agree with this. I’ve seen it in my own life taking levodopa and I wish in some ways I’ve never started it although I needed something. The person you mentioned in your post: is that a doctor? I would love to find a doctor that would be a little more open to this suspicion of mine, even if I have to do it via Tele health. I was just wondering if this was a doctor you were seeing or research you were reading and I’m sorry you may have said and I missed it. Thanks!

[ElliotGreen in reply to Godiv]

Janice Walton-Hadlock is a doctor of Chinese medicine. She has worked with people with Parkinson's disease for over 25 years. Whereas neurologists might see their patients every few months or so, she and her team were looking more closely at patients' responses to levodopa medication dosage changes. I really admire her for bringing together Chinese medicine with Western science. I don't think her observations can be readily dismissed.

[Godiv in reply to ElliotGreen]

Thank you Elliot. I appreciate the information; it’s very helpful.

[Godiv in reply to LAJ12345]

Sorry, I see who you’re talking about now my apologies. Please ignore my other post. I had been on her website before but I got a little depressed because she said it was too late sort of if you started the carbidopa levodopa already. So I didn’t read further but I should maybe I can still learn some thing.

[LAJ12345 in reply to Godiv]

Yes me too but if you read the book she does talk about people coming off it but it’s sounds like months of agony. It seems you will forever have a baseline requirement higher than if you hadn’t started it, but it does sound like you can very slowly reduce down to about 300mg per day. And you also have to do her healing method at the same time which I’d say you would have to believe in before it could work. So if you are a skeptic I imagine it wouldn’t.

[Godiv in reply to LAJ12345]

Oh boy. But that’s some hope. I have to check it out thank you. I know it’s it’s hard to get over the feeling that nothing will help. Which is not a good feeling and not helpful at all LOL

[beehive23 in reply to Godiv]

play on words.....nice hahahaha.........i lost hope 2 years ago.

[Godiv in reply to beehive23]

I hear you.

[Godiv in reply to LAJ12345]

I doctor said I could cut back a half a pill per day and it would take about a week. Kind of not sure I believe that because when I’ve tried it’s been incredibly uncomfortable.

[beehive23 in reply to Godiv]

yes and its crucial BP monitoring and tiny amounts in titrating down i used a razor blade to shave off tiny tiny at a time ..ended uup going back on ...mucuna dosing is tough....mixing powder etc all day .......cheers

[Godiv in reply to beehive23]

Okay, thanks, Beehive. So you ended up going back to it? It's hard, because the drugs do have standard dosing going for them and it's difficult with supplements.

[beehive23 in reply to Godiv]

your very welcome...yes i had to quit the mucuna fiasco, mixing, high doses as it has no carbidopa to protect it in the stomach, balancing the metabolic path with doses of amino acids, heart palps etc.

[Godiv in reply to beehive23]

Oh I’m sorry. I can understand how it would be very difficult without the carbidopa element. I kind of had wondered about that myself. It’s good to try though and really there’s nothing wrong with a medication either. We all want to go “natural, “but it’s not always feasible and at least with medications you know what you’re getting.

[LAJ12345 in reply to Godiv]

With the madopar it’s a capsule so I can’t cut it. At least it says not to open it. I do still have some kinson which is a tablet but carbidopa instead of benserazide hydrochloride with the levopdopa. I suppose I could adjust dose by topping up with a small sliver of the kinson if I decrease by a whole capsule but I wonder if the carbidopa and benserazide hydrochloride are ok together.

Just looked it up. benserazide hydrochloride Has a short half life and is excreted in 1.5 hours but carbidopa May decrease the rate it is excreted which can result in higher serum levels. I wonder if that means you could take less madopar and a little mucuna and there would be excess benserazide hydrochloride to stop it degrading? Also noticed benserazide hydrochloride has a huge list of interactions one of which is mannitol which could increase the serum level. It looks like if you take madopar you need to check the interactions with any supplements as the list is long. Also salbutamol which is an asthma drug, and tocopherol, and selenium!

[Godiv in reply to LAJ12345]

Oh, wow, thank you! Lots to think about it.

[beehive23 in reply to LAJ12345]

i did for 2 yrs after 6 yrs on.............

[beehive23 in reply to beehive23]

quitting sinemet when you have a PD need for dopamine is like quitting water..................imo

[LAJ12345 in reply to beehive23]

Yes she says once on it that is the case as you body has a new lower natural amount after taking it so it seems you’ll always need a bit extra. I think the approach seems to be take as little as possible so you feel it is not quite enough as any more becomes addictive so will require increases. A bit like morphine balancing pain, if you take more than just enough it becomes addictive.

[Godiv in reply to LAJ12345]

Hmmm, that makes sense. I noticed I needed C/L much more after I increased it. The increase was more than I needed (and I sit here with twitchy toes) if that makes sense. I wish there were more dosages available of the regular, non-extended C/L.

[Godiv in reply to beehive23]

There is that; we do need dopamine for sure.

[LAJ12345 in reply to Godiv]

What brand to you use? If it is in a tablet you can adjust it but capsules are difficult.

My husband also has mirtazapine. (. Remeron). He had weaned off that down to a small amount which I weighed on a jeweler's scale. When he needed to go lower I had capsules made by a compounding pharmacist that were about 10% of the original 30mg. He now takes about 1/6 of one of those which I weigh out into an empty gel cap. It has taken a year to decrease to this level. It is enough to help him sleep but doesn't cause all the side effects he had before. For him it is enough. He tried going off that final 1/60 of the original amount but had horrible reaction. So again it seems impossible to lose the last fraction.

The GP thinks it isn't possible for that little to do anything. I don't think they have any idea how they work.

[Godiv in reply to LAJ12345]

I use just the generic carbidopa levodopa. They are scored pills which helps. Of course the doctor doesn’t think it would affect your husband! Because he’s not the one having the effects. Argh

[Andrac in reply to LAJ12345]

One of the medications my wife’s doc started her on is Mirtazapine two weeks ago at 5mg. What is your husbands issues with it?

[LAJ12345 in reply to Andrac]

I blame mirtazapine for starting his Parkinson’s symptoms. It mad him apathetic and he would not get out of bed or do any exercise and that’s when his face and arms stopped working. They gave him 30 mg though! Is she really on 5 mg? I didn’t know it cam in such small pills. I had his compounded to 3.25, then slowly reduced it by weighing out the powder. Now he takes 1mg which is enough to help him sleep without totally zonking him out.

Also when he started Mirtazapine he was weaning off the fluoxetine which had made him suicidal and he went through a very compulsive period of gambling, speeding in the car and wouldn’t stop eating and put on about 10kg. Not sure if that was caused by the mirtazapine or coming off fluoxetine or the combination effect.

[Redginger in reply to LAJ12345]

We are reading her works and I remember that she says you DON'T have to believe it, you simply have to do it, or at least believe it enough to want to do it.

[beehive23 in reply to WinnieThePoo]

we still have sinemet and NMS risks which has not changed.. cheers.

[LAJ12345]

Scary stuff. She describes what I feel is happening but worrying she says don’t bother trying to recover after starting the drugs.

[beehive23 in reply to LAJ12345]

the withdrawal can cause nueroleptic malignant syndrome. baaad stuff.........hang tough.

[Andrac in reply to beehive23]

I have not seen any thing but positive results now for seven weeks since my wife went cold turkey on a dosage of 2 pills of 25/100 CL 4 times daily.

No slips, trips, or falls, no freezing no hunched over, no learning to port. However she does have dementia which presents a more compelling challenge, coupled with inoperable lumbar spine damage, and autoimmune disease.

[beehive23 in reply to Andrac]

thats great....i came off before as well it was hell.........cheers.

[marnegro in reply to Andrac]

Hi Andrac, how long was your wife taking L/C before quit?

[Andrac in reply to marnegro]

1 year to the day!!

She is now taking short steps versus the shuffling and wobbling she was used to. No freezing when going from one color tiles or stepping on and off of rugs.

While she still has many of the Parkinson’s characteristics the falling was the worst and each new day is one day farther away from the last fall. Is this false hope, no I am a realist and know that some of the typical issues of PWP will resurrect with a vengeance.

[Andrac in reply to marnegro]

Almost a year.

[LAJ12345 in reply to Andrac]

Mmm just watch out round the 10 week mark as It appears there can be sudden withdrawal symptoms even though you cope well for a while it can suddenly hit. She says if you then go back at the same dose it can cause problems and addiction so if she does, start at a very tiny amount . She says it takes 10 weeks to reach equilibrium.

(This is just from the book not medical advice so I don’t know if it is true)

[Andrac in reply to LAJ12345]

Thanks will read up on what symptoms might appear and be even more vigilant in my daily routine.

[LAJ12345 in reply to Andrac]

I think part of my husbands current state is due to sertraline (Zoloft) which was for anxiety. It was behaving in the same way making him anxious and jittery. He has taken a year to come off it and was off it a few of months and then he had a big deterioration. Possibly due to withdrawal of the sertraline, or maybe not, but it seems like all of the symptoms she is listing. I think once on these things some people can’t get off easily. It’s the last wee amount that is the problem. I think some stays in the system much longer than they think. Well the half life is the time to use up half so there is still some left in the system for ages. I think the problem starts when the last few molecules are gone And the brain is unsupported. Having said that if you have to keep taking a tiny amount forever I guess so long as you don’t get the drug side effects it’s fine. My husband has always been an over reactor to all medication and always gets all the side effect. He doesn’t read up on the them so it’s not imaginary! I had his DNA analysed and it says he is a slow metaboliser of lots of pharmaceuticals. Which is dead right! So what I have found is he really only needs a fraction of what the doctors prescribe of anything. The drug reactions are a sign the dose is too high. Unfortunately the madopar comes in capsules so they can’t be cut up. And I think his dose has been too high.

The aha moment is when I read you can have the “enough” dose, then over that is the dystonia dose, and any more you start to freeze up and have other bad reactions. And of course the nurse says it’s a sign he’s progressing and it isn’t enough! The opposite is true. Hopefully as he has only been taking it for a short while he can come down a bit. The Kinson C/L he tried first was stronger . No wonder it made him so sick each time he took it.

[Andrac in reply to LAJ12345]

My wife was on Zoloft for years and they weaned her from that and started Queitapane and the side effects of that monster drug were miserable.

[LAJ12345 in reply to Andrac]

Why did they wean her off Zoloft? Did it make her agitated?

[Andrac in reply to LAJ12345]

She had taken it for so long it’s potency had run flat.

[beehive23 in reply to Andrac]

i live by quetiapine fumarate! it spells sleep..heheheh

[Andrac in reply to beehive23]

I know several Vets that take it for PTSD, thankfully that’s not one of my mefs after I saw what my wife went through. If this were an aircraft or engine with a good trouble shooting section it would be solvable.

[beehive23 in reply to Andrac]

USN boomer sub boat...............nuc.......Groton Conneticut. way back when. Boomers..SSBN......i hear you ..but nothing fits the diagrams in the real world unfrtunately ...hang tough. cheers

[Andrac in reply to LAJ12345]

LAJ12345 I forgot to include Vraylar as one medication they prescribed and if you look at the side effects of this drug she had half of them!!

Dangerous drug should carry the black box warning or maybe a coffin warning.

[LAJ12345 in reply to Andrac]

Good grief were they trying to cure her or make her sicker??

Well it does say on the Zoloft if you get these symptoms notify your doctor immediately which we did and he just said it’s not enough and doubled it!

[Grumpy77 in reply to Andrac]

Is the dementia and lumbar spine damage as a result of her stopping c/l or that developed independently

[Andrac in reply to Grumpy77]

The spine is a result of the “ Birthday Candles Syndrome” however the Dementia is the puzzler?

Parkinson’s and Mild Cognitive Impairment we’re diagnosed about same time.

They ( the Neurologist and Geriatric Psychiatrist) initially assessed it as Alzheimer’s disease due to her MCAT scores.

Over time they have revealed that it’s not

AD and it may be four or five years before they can truly identify the specific type Dementia.

In reality only an autopsy will identify the type.

[Rosenmu in reply to Andrac]

There is help for dementia, takes effort and you really have to regulate your blood sugar levels. It's a good idea to get a handle on the autoimmune, very damaging to the brain. Exercise, blood sugar, stress, diet, healthy fats, supplements, detox, exercises for the brain like crosswords, etc, good for the brain and autoimmune. I use mucuna and frankincense oils for tremors, etc in my PD. Many other things you can do as well.

[Redginger in reply to Rosenmu]

How and how much and how often do you use frankincense for the tremors?

[Andrac]

Will definitely read this soon as I get it in my hands!!

[beehive23 in reply to Andrac]

pdrecovery.org/once-upon-a-...

download is further down the page under "publications".....cheers

[Andrac in reply to beehive23]

I just down loaded to my PC and will start this afternoon. Here in south Texas it’s still triple digits in the afternoon🥵🥵

[beehive23 in reply to Andrac]

ohhhh thats brutal west colorado same plus smoke and ash.................cheers!

[beehive23 in reply to Andrac]

you ok post hurricane?

[Andrac in reply to beehive23]

Oh yeah, lots of family over in Lake Charles area that are dreading going back to see what they don’t have anymore.

[beehive23]

the whole thing is on the web.....downloadable free...i like real books i can hold .....but this was easy enough. cheers

[Somic67]

I read it 5 years ago and found everythink in it to be true. levodopa (at the amount fund in std meds - ie L/C) is an highly addictive drug and this is suspected since 2003 (at least).

Clin Neuropharmacol. 1989 Aug;12(4):271-84.

Levodopa consumption reduces dopaminergic receptor responsiveness in Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/280...

Rev Neurol (Paris). 1990;146(3):215-8.

[Neuroleptic malignant-like syndrome following levodopa withdrawal].

ncbi.nlm.nih.gov/pubmed/218...

Levodopa May Be Addictive - 2003

Popular Parkinson's Disease Treatment May Lead to Addiction - By Jennifer Warner

webmd.com/parkinsons-diseas...

Tapering of Parkinson's Drug May Lead to Severe Withdrawal Symptoms

Neurology Reviews. 2010 February;18(2):1b, 23

mdedge.com/neurology/articl...

Neurochem Res. 2008 Mar;33(3):401-11. Epub 2007 Aug 24.

The role of 3-O-methyldopa in the side effects of L-dopa.

ncbi.nlm.nih.gov/pubmed/177...

[beehive23 in reply to Somic67]

Bingo! nice links!.

[Andrac in reply to Somic67]

Somic, I am a voracious reader and appreciate these links to review, my Degrees are in Aerospace where there are no Shades of Gray.

I am rapidly realizing that Parkinsons and associated Dementias are all shades of Gray.

[Somic67 in reply to Andrac]

Hello Andrac.

Happy to please you. I've more of them if you like but you can easily find them by yourself

My Degrees too are in Aeronautical and Aerospace Engineering, Address Aerspace systems.

I'm not familiar with the espression Shades of Gray but I can immagine the meaning.

My opinion in that Parkinson is a movemet disorder (slow movements, tremor and rigidity) caused by an "electrical disarray" in the brain. This is a stratedy use by the body to save resource due to lack of Thirosine caused by a gut dysbiosis due to unhealty food and lifestile, stress and mental attitude.

These are the 3 and only real symptoms (as documented by Doctor Parkinson himself originally). All the others (motor and not motor) are caused and accelerated by meds. Current dosage of levodopa in the meds (mg = milli grams) and the addition of Carbidopa to overcome the body defenses (nausea and vomit to avoid overload of toxic levodopa) and increase concentration in the brain to get an immediate therapeutic effect, are 100 if not 1000 times more than the real need of the brain (ngr = nano grams). This causes many all the long terms damages and problems. I would have much more t say but I don't want to bother you and will write only if you are interested.

I tell you this last thing: 5 years ago I've voraciously read all the books of Janice Hadlock (1.000+ pages in total) available free of charge in the pdrecovery.org site. Sadly too late. It was eyes opening experience that gave me asnwers to many unresolved questions and has brought me to a totally different opinion of the disease and change my strategy (sadly too late to avoid many meds induced problems including the terrible addiction)

Let me know if you have any questions and/or couriosity. It will be a special pleasure for me to reply to a colleague.

Pls only apologise me and be patient if replies are not immediate.

Speed is not my best characteristic in the last years.

Best Regarsds,

[Boscoejean]

if a person needs to taper off dopa mucuna how can it be done safely? Are there any sites that give directions on how to do this?

[beehive23 in reply to Boscoejean]

mucuna pruriens? if its the natural stuff i can only say i reduced it slowly while replacing it with Rx carb/levo. hang tough.