PD drugs accelerate disease progression

quotes

- "All along PD progression brain produces less and less dopamine. Since l-dopa inhibits dopamine production it accelerates deficiency and patient becomes addicted to l-dopa. At this stage brain will never produce dopamine again."

- "Since PD is not understood, its treatment actually accelerates disease progression. And like any so called degeneration, PD is caused by the usual suspects: e.g., gene mutation, autoimmunity or plaques. PD is a dynamic process . I maintain that it is caused by a virus.

Virus lacks genes for its propagation. It enters nerve cells, hijacks their genomes, which start producing viruses, and finally die (lysis). PD manifestations are a response to virus induced nerve cell death. Virus destroys nerve cells which produce dopamine. PD is a dopamine deficiency. Its manifestations are attempts by the organism to live with this deficiency. PD symptoms like tremor and rigidity are attempts of the organism to maintain life in a state of deficiency. PD is an interaction between organism and virus with three goals:

1. End virus propagation (Immune system).

2. Damage repair.

3. Homeostasis adjustment.

Since virus propagation cannot be stopped, PD is a chronic incurable disease.

There are to ways to interpret PD symptoms

Medicine: Symptoms are the essence of PD and have to be corrected.

Alternative: Symptoms are attempts by the organism to live (survive) in a state of dopamine deficiency. PD is a new life. PD drugs accelerate disease progression. All end in dyskinesia which is worse than PD itself. The vital treatment goal is a compromise between organism’s solution and patient’s requirement for a normal life. Since l-dopa is toxic and promotes dyskinesia, use it as a last resort.

I shall now explain the dynamics of the PD process. All along PD progression brain produces less and less dopamine. Since l-dopa inhibits dopamine production it accelerates deficiency and patient becomes addicted to l-dopa. At this stage brain will never produce dopamine again.

Rule: Withhold l-dopa as long as possible. If needed use it sparingly.

Chi-Kong is the superior way to treat PD.

It combines:

Meditation which optimizes dopamine utilization,

Exercise which boosts dopamine production"

youtube.com/watch?v=D524DVn...(Not working as expected?)

[Enidah]

If only! When I think back on how much pain I was in and how I couldn't walk any distance at all before starting the meds and now I can take 8 Mile hikes, well, I say hip hip hooray for the PD meds!!

[6780]

i just began ldopa. my 3rd pd doctor believes in it. my 2 previous pd doctors did not.

question: what symptoms are ldopa supposed to improve? i don't know if meds work or not since i don't know what they are supposed to make go away. thanks i am water exercisng in pool. that i know works i can feel it. c

[Hidden in reply to 6780]

Go to my profile and search my post regarding Mayo clinic

mayoclinicproceedings.org/a...

Doc. Stanley Fahn

World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.

video

healthunlocked.com/parkinso...

youtu.be/utVZaOLUiDo(Not working as expected?)

37:20

Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”

a.Each person should be treated individually and each may require a different dosage of Sinemet to get a response.

b.Some physicians fail to push the dose after it reaches 300 or 600 mg/day.

c.My “limit” is 2,000 mg/day.

[6780 in reply to Hidden]

i was a patient of Dr. Stanley Fahn (1 visit) last year. he took PD videos of me,

i have been taking 25/100 3x for 2 weeks. 1/2 dose first 2 weeks. how do i know if i am a non-responder?

what symptoms are supposed to be relieved? thanks.

I have seen 5 PD doctors and been treated by 3, two of which have gone into research. quite frankly i have been very impressed by the intelligence of all of them. they don't concur on treatment. PD seems more an art than a science with no cure yet. c

[lempa_nik in reply to 6780]

Hi, 6780,

You ask "what symptoms are supposed to be relieved?"

I can only speak for myself. But with each dose of L-Dopa (from Mucuna, hence without the carbidopa) all my symptoms (tremor, lack of arm swing, mask-like face) go away, or are greatly reduced; after the meds kick in, this relief lasts about 2 hours if I have eaten a meal, and about 3.5 hours if I took the meds while fasting (or well apart from food).

[6780 in reply to lempa_nik]

the reason i ask is i have 3 chronic illnesses that cause similar symptoms. osteoarthriis, with spine, knee and nerve degeneration. i have have high chloresterol and take lipitor generic and of course P.D. The osteo disease has pain, fatigue, balance and difficulty walking with both knees requiring total knee replacementr as symptoms. And, it seems the lipitor maybe causing a lot of mobility symptoms. who knew?

i just began carbidopa/levadopa. my concern of course is dystonia occurring.

i think i do feel better mobility wise but began water aquatics 4 weeks ago 4x a week and the first day of class in the pool i was like a 20 yr. old. we have PD members say exercise and no meds is best and others credit their meds for best practices.

nothing i have gets cured so i wish each symptom would color code itself on a scan so i could know which symptom is caused by which disease and also color coded scan while in pool if this without pd meds relieved symptoms.

[bassofspades]

Okaaaaaay...

[stepan13]

Thank you for sharing. There are so many simplifications and questionable statements in this presentation. But I agree: Chi-Kong is good for everybody and for everything.

[GymBag]

YOU said

"Since PD is not understood, its treatment actually accelerates disease progression."

I think that is a bit of a jump Roy. Do you have any supporting data. and please do not refer me to Dr. Fahn's unsubstantiated opinions .

[Bailey_Texas]

This is just bull shit. He believes PD is caused by a virus. "All end in dyskinesia" that is just a lie.

He is old school. Delaying the use of levadopa has no effect on how long it works or how well it works. Waste of time.

[lempa_nik]

Dr Zajicek's hypothesis of Virus infection as the primary cause does not ostensibly fit with the increased risk of PD from brain trauma or toxins, or simply from genetic variables (causing, e.g., above-average production of alpha-synuclein). But perhaps a virus is the initial trigger in some fraction of PD cases.

The doctor also makes some good points:

a) external provision of L-Dopa probably does cause the body to downregulate its production of Dopamine; and

b) his recommendation of meditation or Chi-Kong, and exercise is completely mainstream, and non-controversial.

[6780 in reply to lempa_nik]

is there a test to determine dopamine levels?

[lempa_nik in reply to 6780]

You can do a DAT scan. But what this can reveal, low dopamine in the substantia nigra, is consistent with several diseases besides Parkinson's. So you'll still need to go through a clinical assessment to nail it down.

"It is also important to be aware of the limitations of DAT scans. Any disease process that causes loss of the presynaptic dopamine neurons will result in an abnormal scan. DaTscan is not able to differentiate between Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy and other neurodegenerative diseases affecting the dopamine neurons in the brain."

Source: movementdisorderscenter.org...

[GymBag in reply to lempa_nik]

DaTscan is not able to differentiate between Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy and other neurodegenerative diseases affecting the dopamine neurons in the brain."

Doctors are not able to either

[Tribselyov]

"And the gods laugh in their sleeve, whom to watch... whom to believe.."

"Priming non nocere"

[jujulini]

i know my pd was caused by mercury, not a virus. and what would i have been without c/l for the past 12 yrs? not walking, unable to tie my shoes, cook, eat, laugh, interact with people, etc, etc, etc. ill take my chances with the c/l. at least i can have a life thats closer to normal. its a quality of life issue.

[beauxreflets]

What should not be overlooked is the 'movement or motor element' of all muscle tissues that occur throughout the body.

For example, even the very fine movements within nasal passages and airways that help to prevent congestion require dopamine (synapse in nerve function) just as the larger bodily movements of limbs etc., require it.

So for Prof. Zajicek to boldly say you do not need L-dopa (medication) during sleep "Do not take l-dopa before going to sleep. It's a waste" is rather a strange thing for any doctor to state!

[6780 in reply to beauxreflets]

i am new to carbi/levadopa. after each dose i sleep 1-2 hrs. my night sleep prior to med was very sleep deprived mybe 3 hrs a night. now that i added 3 naps after each carbidopa/levadopa dose i am less sleep deprived and feel better but normal life is challenging.

anyone need sleep after this med 3x a day?

[beauxreflets in reply to 6780]

I sometimes yawn as the meds start kicking in, the lull before the wave so to speak..

[Nitro53]

RoyProp What fantasy world are you living in?

[Hidden in reply to Nitro53]

I am not the author

[Nitro53]

Sorry Roy but this type of info in my opinion is bad and misleading. Enough said, have a good day

[Springfield78]

I liked these thoughts as we all know exercising and mediating are benefical for us. As to a virus...something to ponder and think back as to when symptoms began. Take what might be and let the rest go. Thanks, Roy for stirring the pot! We need to use our minds and your article accomplished it.

[JohnPepper]

I don't share your view, but do agree that Levodopa should be the LAST RESORT MEDICATION. I feel sure that Pd is NOT caused by a virus, but it does not matter. I am sure that the misfolding of Alpha Synuclein is the problem and that GDNF has been proven to reverse that problem, so why are we not looking for ways to get the brain to PRODUCE MORE GDNF?

[6780 in reply to JohnPepper]

what is GDNF please?

[lempa_nik in reply to 6780]

GDNF = Glial Cell Derived Neurotrophic Factor

[JohnPepper in reply to 6780]

GDNF (Glial Derived Neurotrophic Factor). Glial cells produce a natural protein in the area of the brain called the Substantia Nigra. These cells are the policemen in that area and they control the dopamine producing cells.

In a study carried out in 2003 in the Frenchay Hospital in Bristol, Dr Gill infused artificial GDNF into the brains of 6 stage 4 Pd patients over a lengthy period, I think 9 months. After that period all of those patients got appreciably better. I have met 2 of those patients, one of whom you would never know he still has Pd.

Having done this study, why did they not do another study to see how to get the brain to naturally produce a lot more GDNF? I believe that I have found a way to produce more GDNF in my brain by doing FAST WALKING. I have been medication-free since 2002 and nobody other than a neurologist would know that I still have Pd.

Scientists went on to do two more studies on infusing artificial GDNF into the brain but both of those studies failed. Surprise, Surprise. Why would they want a natural substance to reduce the symptoms of Pd? That would not be good for the drugs industry would it?

[lempa_nik in reply to JohnPepper]

John, I always wondered why you focus only on GDNF, and do not also mention BDNF, Brain-Derived Neurotrophic Factor. Well, this article helps justify your choice:

ncbi.nlm.nih.gov/pmc/articl...

In the abstract, we find these sentences:

"Both glial cell line-derived neurotrophic factor (GDNF) and brain-derived neurotrophic factor (BDNF) can protect nigrostriatal dopaminergic neurons from neurotoxins in rodent and monkey models of Parkinson’s disease (PD). . . . These results suggest that GDNF is more effective than BDNF for correcting the rat model of PD, and that there are no detectable benefits from expressing both of these neurotrophic factors."

[JohnPepper in reply to lempa_nik]

Very interesting indeed. I refer elsewhere to the study carried out on 6 stage 4 Pd pateints at the Frenchay hospital in Bristol, which was highly successful.

I am not a fool, and am aware that we cannot get the drugs industry to fund studies to find out how to get the brain to produce more GDNF, because it would no be in their interests. They are n business to make money and if we ca get the brain to produce more GDNF, they would sell less medication.

The name GDNF tells us that the Glial cells produce this GDNF (Glial Derived) so WHY DON'T WE PD PATIENTS RAISE MONEY TO DO SIMPLE TRIALS ON VARIOUS FORMS OF EXERCISE THAT CAN ENCOURAGE THE GLIAL CELLS TO PRODUCE MORE GDNF?

I feel quite sure that my FAST WALKING does exactly that, but there could be other forms of exercise that could be as good or even better. Many people either don't want to do fast walking or are unable to d so, but would willingly try other forms of exercise.

Dr Beth Fisher's studies showed that swimming had no influence on improving Pd symptoms, but that was not a study on GDNF production.

Instead of spending vast fortunes on drug studies, none of which are intended to slow down the progression of Pd, to the best of my knowledge, let us spend our money on finding ways to naturally produce more GDNF.

What support do I have for this?

[beauxreflets in reply to JohnPepper]

What food types will or do promote GDFN?

For then we will have an ability to really impact upon the progression of PD John.

[JohnPepper in reply to beauxreflets]

I cannot think that any food has the ability to make the glial cells produce more GDNF. The production of all growth factors in the body has to be caused by something happening.

I think that walking fast is not natural. If we are in a hurry we would normally start to run. Maybe walking fast tells the brain there is something wrong and the 'Fight or Flight' reaction takes place and the glial cells produce the GDNF to protect themselves from injury.

Please don't be tempted to believe that there is an easy solution to dealing with Pd. We have t put something in before we can expect to get something out.

[beauxreflets in reply to JohnPepper]

I agree fast walking is not natural but if producing GDNF is a game changer, then digging around this factor to find a diet that promotes and sustains GDNF is quite a natural response. Nothing ventured nothing gained

Running the body on Adrenalin may just mask the underlying PD symptoms?

So what actually creates GDNF? Is it a repetitive reaction in the lower region of the spine, produced by pelvic muscles that then generate it in the Central nerve?

[lempa_nik in reply to JohnPepper]

ROADBLOCKS TO GDNF EFFECTIVENESS

John, The prospects for GDNF may be less rosey than you think. You may be interested in an excellent review summarizing the progress on GDNF-stimulating therapies (via gene insertion). Jeffrey Kordower, Ph.D., a leader in this kind of research, was interviewed in late 2016. Of course, injection into the brain is much different from the exercise-induced GDNF you are talking about, but it may still have a lot to teach us about the possible effectiveness of GDNF for treating PD, regardless of what the source may be. As it turns out, there are two big obstacles in the way of success: a) (for a newly diagnosed patient, typically 5 years into the disease) there are too few surviving dopaminergic neurons to benefit from the GDNF, and b) alpha synuclein "gums up" the receptors where the GDNF needs to dock.

Morale of the story: contrary to your premise, John, fresh GDNF may not be at all the reason why exercise is so beneficial for PD. Benefits seen in one early trial were traced to the placebo effect.

"06 Stopping Disease Progression: Growth factors"

To listen to this half-hour interview, please scroll down almost to the bottom of this page:

soundcloud.com/world-parkin...

[JohnPepper in reply to lempa_nik]

It is not in the interests of the drugs industry, and any of the people working in the Parkinson's Support Organisations to find a cure for Pd. If it happens they will soon be out of work.

Th second and third studies done in the USA failed. They failed because they did not do them in the same way as the first study, they did not use the same catheter and they did not place in exactly the same position in the brain. Their final conclusion was that GDNF did not give a better result than the placebo effect and it was found to be TOXIC in the brain. WHAT A LOAD OF CODSWALLOP!

Why has nobody in the science or medical world come to me to find out why I have been able to overcome many of the effects of my Pd? The reason is that they don't want Pd patients to get better. IT IS BAD FOR BUSINESS!

[beauxreflets in reply to JohnPepper]

John,

The drugs industry: They will not lose out, as there is and always will be an interim period between diagnosis, treatment and repair / cure, and the numbers getting PD are rapidly increasing; as more toxins are continually being dumped into the Bacteria world and bacteria continue to mutate!

Accordingly, Parkinson's Support Organisations will also always be required; not forgetting that many they employ in research etc., will honour the Hippocratic Oath.

GDNF is as I understand it, 'A repair mechanism which has to be continually; Overly activated'. A bit like putting a new repair patch over every new puncture as it occurs in worn out car tyres, and more than this, the glue has to be able to hold!

Also as you mentioned Fast walking is not Natural, and for many it is not an option that is available to them.

And finally, I think that the science and medical world has already come to you! Exercise and its role, is given a far greater emphasis following your hard work and you should be very proud of that fact. I for one am very grateful for all your effort in sharing such wisdom, Thank you.

[JohnPepper in reply to beauxreflets]

I suspect that the drugs industry squash many remedies that could damage their interests.

If GDNF has no lasting affects then I would not be writing this response.

[beauxreflets in reply to JohnPepper]

A pain killer may take away a headache for good long periods in time, even though they may actually overrule Full healing; as pain is the body's way of indicating there may be a problem here or there.

PD is progressive; and the 'in-natural' Fast walking appears to have to be a constant regime in process to facilitate the apparent generation in sufficient GDNF to make any headway in the tough battle. Which also highlights the problem in how to achieve the likely correct dose implications on a daily basis for GDNF injections or tablets.

I am not rubbishing the GDNF possibilities - but drug manufacturers and prescribers of medicine do become legally liable, so I guess there is still a long way to go. At least fast walking is self administered.

Added to which the damage through PD , which apparently has its roots in the body, Peripheral nervous system is still occurring.

Surely any potential Cure has to eliminate the instigating initial aggression. Which in my opinion is, the repairing of the defense system to help eliminate rogue folded proteins building up and crossing the blood brain barrier into the CNS.

[JohnPepper in reply to beauxreflets]

All I have to do is walk for one hour three times a week. Is that too much? As a result of doing that, I have lived, without any Pd medication for the past 16 years. I am 83 years old and am fitter and more healthy than most other people who don't have Pd.

I don't care if they never find a cure for Pd, because I live a 'normal' life as long as I keep walking.

I have other health problems, but as far as the Pd is concerned I have no worries.

[GymBag in reply to JohnPepper]

is that to much

YES John it is . you don't have PD and you never have. You have no idea what we are going through . You no more understand PD than any body else who does not have it including doctors who have study and certificates and diplomas. Your arrogance and ignorance is no longer acceptable. I walk about 50 feet before my toes curl under and I can not stand up any longer. How fast should I do this ?

Go enjoy your walk .

[JohnPepper in reply to GymBag]

How can you tell me, or anybody else, that I do not have Pd, and never have?

Your symptoms are different to mine as are everybody else's. If you would like to share with everybody else your symptoms I will do the same.

[6780]

is there a way test GDNF in our brains so we can tell what works?

[Nitro53]

C/L doesn't inhibit dopamine it produces it which the brain is losing which is why it helps relieve symptoms

[999---666]

it's the same thing we saw with insulin when it first came on scene, before it was purified.

do we know if it's brought on by virises? no.

i think, it must be a whole other system, that we don't even suspect exists. there's immune system at the forefront, there's neuroprotecters, and there's protection and repair of genome. there's neuroplasticity for minimal repair of brain cells that keep us alive, if at all possible. huumm

let me review it. this am i read; tyrosine is precursor of dopamine, but it can't get to where it's meant , because of enzyme. i don't have whole pic.