Parkinson's Disease Support Group

For over two years I have taken vitamin B6,B12,Siberian ginseng 500mg, L=Tyrosine 1000mg and Selegiline 10mg.My Doctor now recommends L=Dopa 100mg.My Father and Uncle did ok on this for awhile and then developed tremors.So what should I do? I have tried to research this and have difficulty with just treating the symptoms of PD.

I object with the MPTP research model of PD,I think a lot of time has been wasted with this poor facsimile of PD. At the end of the day,all the treatment doctors offer,just deal with symptoms and not the cause of PD.

I asked my doctor if the treatment of the symptoms is so important,will it prevent the possibility of predation? Would some predatory animal not stalk me because my symptoms are under control? My doctor smiled,but I'M serious,In the animal world some parasite is more likely to aid in your demise then man made toxins.

To be brief would it not be sensible to treat for micro organisms? I would like to know if anyone has taken Amantadine and Monocyline in together, for Treatment? HIV has been treated with multi drug combinations with some success.

I would like to know if anyone who had chemo for cancer in their forties or fifties, has later gone on to suffer PD. I would like an answer, e mail cjmarshall!3@gmail.com

Post edited by: clarence, at: 07/04/2012 06:17 PM

I'd like to welcome you to our family. I'm happy you found us.

My first concern is that you are taking so many vitamins, etc.

I have a lot of data that I developed for myself that shows a clear conflict between many vitamins and the Levodopa that I take for my PD. I highly recommend that you eliminate everything you can before you start slowly adding them back one at a time when you are absolutely convinced that they are doing you no harm. Taking so many medications just invites interactions and conflicts.

I really don't give a darn what the health wackos say. You are inviting disaster if you take the wrong medications together.

Second, there are some parasites that can give you symptoms similar to PD (i.e. Lyme Disease. Our own Bettyg is the pro on that topic). However, right now there is little or no data to support that PD is caused by a parasite.

I highly recommend that you read Rachael Carson's book "Silent Spring". To me it is probably the most important book ever written. Thanks to her work DDT and many other pesticides were banned before they did much more damage to life on this planet. Please read it. I sincerely feel that you would be remiss in not reading that book.

Here's her fan page:

http://www.rachelcarson.org/

Steve

Post edited by: songfellow, at: 06/29/2012 09:04 AM

Welcome! So sorry your symptoms are showing so early and before your father and uncles symptoms did. Since you have other family members that have PD. Then most likely you have a dominate gene of PD.

The gene factor can show up as many neurological diseases. My husbands family didnt just have PD, they also had MS. Both are neuro diesease that affect how the transmissions from the mind to the body.

My spouse didnt know his father had PD. He had 2 surgeries and took normal pain medication afterwards and those pain medications were the kind, PD patients are not suppose to have. It flairs up the disease and in his case, accelerated his symptoms.

With previous history, a parasite is less likely to be the cause or a reason to treat one. It could also flair you more. Its insults to the body that make our bodies react and dormaint gene emerge.

I agree with Steve, too much of a good thing can also be bad. Have you told your doctor you are taking all the vitamins? The doctor needs to know all that you take. Some vitamins and the times you take them can interfere with the absorbtion of the PD drug.

A drug rep explained this example to me.. Our absorbtion is like a limited space parking lot. There are only so many spaces for the medication to absorb. If that spot is filled by another vehicle/drug/vitamin. Then the drug ya wanted to get the benefits from doesnt have that parking space to connect to be of useful. So the vitamins could be parked in the PD drug spot and then the PD meds is of no good, has no where to park and travels out of the body. Wasted medication.

You can also check with your pharmacy to ask about drug/vitamin interactions with PD meds.

It would be nice if PD had one list of drugs, taken a certain way, acted the same with everyone and all went well. That is so not the case with PD. Not every PD person is the same, acts the same, has the same symptoms and gets it at the same time. That is partly why each case is different or special in its own way. Its sorta a specialized disease per person. Not including ones own body issues prior to the diagnois of the disease.

That is also why it is hard to diagnois for some and not for others. If the L-dopa is improving your symptoms. The it is working. If not so much, the a higher strength may be needed. Keep your doctor informed of your symptoms and improvements as much as possible.

Get involved in PD testing/trials. Steve has done serveral to promote what does and doesnt work for others. My spouse too is involved in a PD study.

Getting PD earlier on is a bummer. My spouse just turned 50. We still have children at home. Life is not easy for any of us. Get involved in a support group both you and your family/caretakers. You will learn so much, what's working whats' not. Exercise is so important and drinking water.

Good luck to you..

Hugs and Prayers,

Alana

Pls stay with us & ask yr questions, u never know how many u help.

Thank You Songfellow ,Craftcordmom,( Do you have a craft hobby?) Priyeni and Bettyg (20536 posts wow!) for your replies. I had my 58 birthday on the 2nd (July), I was diagnosed with PD near my 52 birthday.

I think I was spotted early because my wife is a nurse and I was sent to the neurologist. I think I may have not gone until now. Over The past few years my Neurologist says I have had "slow progression".

Songfellow mentioned that I am on too many vitamins and Drugs. I joined this group to compare notes . Selegiline 5mg twice a day is standard PD therapy and so far the only prescription I take, the doctor now suggests Levocarb 100mg daily because of movement and fatigue.

L-Tyrosine is a precursor to dopamine, I will drop it if I take Levocarb. The two B vitamins are associated with brain health. I take Siberian Ginseng,a mild anti depressant.I do not take anything on the weekend, I read some where that the fluctuation is helpful.

When I first was diagnosed I resented all the recommendations for vitamins and drugs.( and still do) You have to research this stuff and decide if it is useful.

I had hoped someone had some experience with Amantadine and Monocyline.

When I figure out this site I will give some Happy face hugs. Clarence.

I found a reference to it in the book Healing Lyme, I wish I had the authors name,

Please do not think that this is a "here try this" sort of comment. I am trying to sort out drugs for my own consumption.I never thought the day would come that I would have any interest in them.

About the inquiry about amantadine I was asking, I know that it has side affects,but before I progress With PD symptoms,

I was wondering about using it short term high dose.

It is used long term low dose for PD and my uncle has the same experience as your husband. However it was first as an anti virus drug.

Hope you get some relief from the heat, today it is 20 celsius in Nova Scotia, Thanks Clarence