Treatment

[drifterd83]

What is available besides carbidopa levadopa to treat Parkinson's? Any natural paths to treat Parkinson's?

[enjoysalud]

On Search Bar write in MUCUNA, lots postings will come up. On search Bar write in Thiamin HCL, postings on that option will come up.

I do NOT have PD. Mom of son who was at first DX with PD.

[Shakinginnc]

I had an appointment today with my Neurologist and asked the same question, she sent a prescription for RYTARY and wow my husband went to see how much it would cost ? The pharmacist told him that it is $600.00 for 100 pills and I would be taking 2x3times a day!! So I ask are our physicians trying to help us or just cashing in on the big Pharmaceutical bull crap? Ugh!!!!

[danfitz in reply to Shakinginnc]

I don’t know the address but there is a website where you can see how much payola your doc gets from big pharma.

[ParlePark in reply to danfitz]

Don’t know if I’d call it payola but here it is.

projects.propublica.org/doc...

[ddmagee1 in reply to ParlePark]

Thanks! This is what I suspected. Food for thought, and I'll leave it at that.

[park_bear in reply to Shakinginnc]

Rytary is just time-release C/L, very similar to Sinemet CR, which is available cheaply as a generic.

[VirginiaKey in reply to park_bear]

What, if any, are the side affects?

[park_bear in reply to VirginiaKey]

Too much will cause dyskinesia.

[Rosabellazita in reply to park_bear]

What happens if you take too little I have a bad hand tremors and shakes my whole arm

[park_bear in reply to Rosabellazita]

Too little will be ineffective in one way or another, resulting in more "off" times than necessary.

[MBAnderson in reply to park_bear]

what is name of the generic?

[park_bear in reply to MBAnderson]

Unclear, but here is a list of manufacturers:

drugs.com/availability/gene...

[PDGal4 in reply to Shakinginnc]

I take Rytary. My doctor gave me a form to fill out, which he signed and submitted to the drug company, and my co-pay is $20. I also found information online for Neupro, also reducing my co-pay from $60 to $20. (I just checked my doc out at the link below, and he's not on it.)

Rytary is time-released C/L, but lasts longer and has a smoother release. Regular C/L was wearing off after 2 hours for me.

[Shakinginnc in reply to PDGal4]

Thank you I will take a look at that website. My doc is in private practice and deals with a lot of wealthy clients (how I ended up going there? My GP sent me!!)

[Hidden in reply to Shakinginnc]

I guess you are not in the U.K.!!

[Don_oregon_duck in reply to Shakinginnc]

I am taking Rytary. Because it is an extended release CD/LD it really helped level out my day. But it is very expensive. To address that the company that makes Rytary has a program to make your costs much more affordable. I recieved a flyer about that at the doctor's office.

They were helping me reduce the cost when I leanrned that I had Agent Orange exposure while in the service, about the time that I was going on Rytary and the US Veterans Administration picked up the responsibility of paying for my meds. The major cost of health care seems to be the medications. I believe the drug companies are not interested in a cure but only a crutch to live with Parkinson's.

[Shakinginnc in reply to Don_oregon_duck]

I am so sorry that you were exposed to agent orange . I have watched a documentary on it and it’s just so sad what’s our servicemen and women had to deal with! And I agree with you about big Pharma I can not afford teven the the lesser amount of 257.00 a month for for the RYTARY!!

[MBAnderson in reply to Shakinginnc]

GoodRx $246 for 90 capsules

[Hidden]

On search Bar write in Thiamin HCL, click

[SFLR in reply to Hidden]

Hi Roy I know you've covered this before but do you take anything other than B1? I've just started magnesium as well as I've been pretty off since İ had flu. Hope all well with you.

Sian

[Hidden in reply to SFLR]

Yesterday I had exam by my neurologist. Both he and nurse surprised at how well I walked. I take only c/L and thiamin hcl

[Hidden in reply to Hidden]

RoyProp,

Did you tell them you were taking thiamine and feel it is the reason for your improvement? If so, what did they have to say about it?

Art

[Hidden in reply to Hidden]

My next appointment is in March. I will see what I may say at that time.

[dadcor in reply to Hidden]

Would you pls share what your current c/L dose is?

[Hidden in reply to dadcor]

3 x day C/L 50-200 ER : morning, 11 am, 5 pm. Because it is ER, I take with or w/o food.

[Rosabellazita in reply to Hidden]

How long have you been taking c/l and did you get dykensia from it? ER is ? Release?

[Hidden in reply to Rosabellazita]

Three years. No dyskenisia. Extended release.

[delboy381 in reply to Hidden]

Hi, Roy how long do you take c/l and do you have some side effects?

[Hidden in reply to delboy381]

Three years. No side effects.

[Rosabellazita in reply to Hidden]

Do you have a tremor and if so does c/l help it?

[Hidden in reply to Rosabellazita]

Tremor, yes. Helped with high dose thiamin hcl or c/l. I prefer credit to B1.

[Jumex2017 in reply to Hidden]

what does cl stand for?

[Hidden in reply to Jumex2017]

Carbidopa/levadopa

[Jumex2017 in reply to Jumex2017]

so sorry, i did find out but because my husband does not take it.

[Hidden]

The following link will give you all of the information you need for thiamine / Vitamin B-1 which is Dr. Costantini's protocol that many have found very helpful for their PD. Also very affordable!

healthunlocked.com/parkinso...

Art

[Hidden]

Pull Test

Roys Pull Test 08/14/2018

First result is typical when one has Parkinson's. Second pull after foot is positioned for better recovery and balance. I was first diagnosed with Parkinson's in the year 2012. I credit my good condition to Doc. Costantini's high dose thiamine hcl advice.

(continue)

B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to IM injection B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

youtu.be/nt1wcjQhj24(Not working as expected?)

[Glennee]

Facebook natural remedies Parkinson’s

Good stuff there

[MBAnderson in reply to Glennee]

I clicked on a few links and got a "security check" warning, which is always an attempt to hack your computer. While most of the links went to different URLs, I think it's all the same operation. They used the words "secret" and "reverse" and "breakthrough" and "ONLY" in the same sentence as Parkinson's. Plus, they can't spell Mucuna. If it is not an outright scam, which I think it is, it's a collection of quackery.

[condor39]

To get back to your question, I am puzzled why you would want to give up on tested and tried effective medication, with known side effects, prescribed by a health professional, to go to untried , untested “natural” substances with unknown effects and unknown side effects, promoted by health amateurs?

[Farooqji]

L-DOPA Drug Holidays

(Source: Life Extension website)

Regular, chronic use of L-DOPA causes dopamine receptors within the brain to become less sensitive, leading to the eventual need for increased dosages of L-DOPA. Research suggests that taking a "drug holiday" from L-DOPA may resensitize dopaminergic receptors and lower the patients L-DOPA requirements, or at least prevent the need for increasing L-DOPA in the near future. In a three-year study, 15 Parkinson's patients were submitted to a seven-day L-DOPA drug holiday. Within the first six-months following the drug holiday, symptoms improved dramatically, and all of the study subjects were able to maintain a L-DOPA dose regimen of 50 – 70% of their pre-holiday dose for the entire three-year period (Corona 1995).

Despite these promising results, there are serious risks associated with stopping L-DOPA therapy, one of which is neuroleptic malignant syndrome, a potentially life-threatening situation. Therefore, a drug holiday should only be initiated under the close supervision of a physician. However, at least one study suggests that use of amantadine, another drug used to alleviate Parkinson's symptoms, during an L-DOPA drug holiday may limit the severity of side effects associated with stopping L-DOPA therapy. In this study, 12 Parkinson's patients were submitted to a three-day L-DOPA drug holiday, and during that time they were given I.V. infusions of amantadine. The subjects were then started back on the pre-holiday L-DOPA dose and symptomatic improvements lasting up to four months were noted (Koziorowski 2007).

[Juliegrace in reply to Farooqji]

One of my neurologists- I think it was one of the research docs - told me that back in the day (70s & 80s) before healthcare became so outrageous, they would hospitalize PD patients for a two week "drug holiday" for exactly what is described in your post.