Recently Diagnosed : Hi! I found this forum... - Cure Parkinson's

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Recently Diagnosed

MomoP profile image

Hi! I found this forum while searching for information on PD. I have been reading for a few months but never posted. Forgive me, this will be long. I am a 60 year old female in the US, recently diagnosed a few months ago. I was initially hesitant to try medication but recently changed my mind to improve my motor symptoms. As scary as this is, I am trying to be grateful it is only affecting my non dominant side the most and I have no tremors. I recently saw a highly recommended neurologist . Diagnosis Prodromal Parkinson’s. ( I think it was a good day for me, so I think in reality, I am slightly worse than the assessment showed) Due to my hesitation for side effects and nervous about starting medication , I was started on Rasagiline but it only made me tired and dizzy, no change in motor symptoms. The Dr said she didn’t think it was necessary to pull out “ the big guns yet” A month ago, I changed to Selegiline once a day, then twice a day after 2 weeks. I feel good on it, no side effects, but again, no change in motor symptoms. I have read and researched so much my head is spinning and I am more confused about what to do than ever. I started taking various supplements and bought many others but haven’t taken them. I am nervous I will harm myself taking so many different things. But I don’t want to miss out on potential benefits especially if there is a chance to slow the progression? This is my present self made protocol

Benfotiamine 250mg ( 2x a day)

Curcumin Elite 500 mg ( 2x a day)

Glutathione 500 mg ( with Milk Thistle and ALA) (1 in the morning)

L-Tyrosine ( 1 in the morning) ( not sure I should take this being on Selegiline?)

Butyrex ( 2 a day)

Probiotic pill ( 1 in evening)

CoQ10 ( 2 a day)

Resveratrol (1200mg ) ( 2 in evening)

Serrapeptase 250,000 iu (2 in evening)

Nattokinase 2000 FUs ( 1 in evening with Serrapeptase)

D3 + K2 (5000 iu/100mcg) (4 in the evening)

Bought but haven’t used

Mucuna tincture

TRU/ NAD

Mannitol Powder

Tri-butyrin

EDTA

Astragalus ( I have since read people with autoimmune issues shouldn’t take this, I have Hashimotos hypothyroidism)

CDP Choline

B-2 Riboflavin

Berberine

Any help/ advice would be gladly appreciated. I apologize for the long post. I know it’s a lot to ask from a newbie. I have learned so much already from this forum. Thank you so much!

123 Replies

I would discuss this supplement list with your neurologist/Movement Disorder Specialist. Supplements are not regulated and differences in doses can cause issues. Some may even cause interactions.

For more information on PD, go to Parkinson.org. The Parkinson's Foundation offers many educational booklets which are free. You can also search for a support group near you. Meeting others and interacting with them is beneficial, You can discuss what they have tried and know that you are not alone. My prayers are with you. Knowledge is power.

Keep a log of your symptoms as well as all meds and supplements you take and when you take them. Take it to every appointment. This will help your doctor see trends and be able to help you better. Also, writing it down means you won't forget to ask about symptoms, side effects, etc. It helps to be prepared when you enter the exam room so that all your questions and concerns are addressed.

Levod profile image
Levod in reply to wifeofparky

wifeofparky, Very good advice!

MomoP, It's highly unlikely that any of these supplements will do anything good for you (let alone slow the progression of PD), and they may cause you harm, and I guess that there are not many doctors who would endorse such a list.

MomoP profile image
MomoP in reply to Levod

Thank you for taking the time to reply! I am trying to help myself in any way I can, as I guess we all are. Somedays I still can’t believe this is happening to me. No, I think you’re right. I don’t think many dr would approve.

Despe profile image
Despe in reply to Levod

No true! Husband's MDS accepts the supplements he takes, even MP!

You are not a doctor.

Levod profile image
Levod in reply to Despe

Hi Despe: I am confused. I never said a doctor wouldn't accept the supplements your husband takes. I don't know what supplements your husband takes. But if he takes a list of supplements like MomoP plans on taking, and your doctor endorses this list, I would strongly recommend you find a new doctor...

pdpatient profile image
pdpatient in reply to Levod

Hi Levod. The doctor in "question" is a Carolina doctor from Duke University, no less I believe. Some elite institutions such as they, practice medicine differently.

RKM

Levod profile image
Levod in reply to pdpatient

I am curious, what is the name of this doctor. It sounds like malpractice to me!

Despe profile image
Despe in reply to Levod

At Vanderbilt, no one malpractices! It is a major university hospital. Hubby's MDS there has just transitioned to RESEARCH! I know it's unusual for MDs to endorse/accept alternative medicine.

PS. Although I shouldn't have responded to your asking me names, here he is:

Dr. Isaacs. Do the rest. . . And yes. . .husband takes a similar list of supplements and vitamins, including MP. Right after diagnosis almost 4 years ago, we made an appointment with Cleveland Clinic Alternative Medicine Clinic (Dr. Hyman is the chairperson). He had various tests done, and the MD (!) there gave us a list of vitamins/supplements my husband was told to start!! Do you see malpractice anywhere??

Smittybear7 profile image
Smittybear7 in reply to Despe

Naturopaths are well read on supplements. Google nutritional frontiers. Com. They have a protocol that they use for Parkinson's.

MomoP profile image
MomoP in reply to Smittybear7

Awesome! Thanks for the info Smitty! I will check it out!

Smittybear7 profile image
Smittybear7 in reply to MomoP

Let me know how you make out!

Smittybear7 profile image
Smittybear7 in reply to Despe

Great information. Do you have to have a referral to go there. Are you on any meds. Where do you live? I am interested in looking into this. Has it been successful so far. Let me know how you make out. Good luck!

Despe profile image
Despe in reply to Smittybear7

Thank you! No, husband (PwP) didn't need a referral. We contacted them on line, gave them diagnosis and they gave us an appointment (back in April 2018). To this date, husband is still taking supplements they recommended. He is doing pretty good so far.

It was a long ride as we live in the South.

PS. About a month ago hubby started Ambroxol and that is really has made a huge difference!

Levod profile image
Levod in reply to Despe

Hi Despe,

If you don't mind me asking, when was you husband diagnosed? How long before he was diagnosed did your husband have Parkinson's symptom? How is he doing currently? What are his worst symptoms? Is he currently taking any prescription meds? How has Ambroxol made a "huge difference"?

Despe profile image
Despe in reply to Levod

I would, if you would be willing to share your personal health (PD) history with the the forum just like everyone else.

My intuition. . .are you a medical doctor?

Levod profile image
Levod in reply to Despe

My history is in my profile. I am not a medical doctor.

Despe profile image
Despe in reply to Levod

I read your history in your profile.

My husband was diagnosed early 2018 but symptoms started at least 10 years before diagnosis that I now recall. His tremors are intermittent, mild, and don't last but a few seconds, and occur mostly at night. No balance issues, at least so far. His posture is a little scooped but he goes to PT a couple of times a week and hopefully he will improve even more. We both have been exercising all of our lives and that probably delayed the diagnosis. :)

AMBROXOL: a game changer, I believe. He has been on it only a month and a half, but his mental clarity (brain fog) is almost back to normal. MDS at Vanderbilt was aware of the trial and he said that he can continue it, it won't hurt him.

He is on two and a half t Sinemet a day and takes it with MP. Since he started Ambroxol, he feels that he doesn't need as much Sinemet!

Levod profile image
Levod in reply to Despe

Hi Despe,

Thanks for sharing the names.

I did some research into Dr. Hyman.

A serious red flag for me is that he sells supplements (store.drhyman.com/).

Also, I found this damning critique of Dr. Hyman:

acsh.org/news/2020/10/14/ma...

Note, this article ends with the statement: "Don't ever listen to Mark Hyman.".

And I find it hard to believe that your Vanderbilt neurologist would endorse a 20+ supplements list from Dr. Hyman for your husband...

Despe profile image
Despe in reply to Levod

You are of the "meds" school, most of us here are of the integrative/functional school. :) Let's agree that we disagree.

Levod profile image
Levod in reply to Despe

Ok

Hikoi profile image
Hikoi in reply to Levod

Hi Levod, I think many doctors will accept patients wanting to takee supplements and dont comment really. They are not endorsing but they know that the patient is likely to excrete most making for very expensive urine.!

pdpatient profile image
pdpatient in reply to Hikoi

Absolutely spot on, Hikoi. But without the "expensive urine making stuff," as you put it, where is the multi-billion dollar supplement industry and those naturopaths going to go. Millions of jobs are at stake and BTW, not everything gets excreted, especially the fat soluble ones.

After all, think about it. Who needs brokers, real estate agents and car dealers? They are all headed the way of the travel agent, but they provide valuable jobs 😎👍

RKM

Despe profile image
Despe in reply to Levod

Actually, Cleveland Clinic FUNCTIONAL MEDICINE, I wrote ALTERNATIVE erroneously.

MomoP profile image
MomoP in reply to wifeofparky

Thank you for your reply and prayers! I started a journal 2 months ago and keep track of those things to see if I saw a pattern too. Especially if I felt really good I wanted to be able to see if I did anything different. I have had good days or hours but I can’t see any special reason why. I don’t know that many doctors would approve? I haven’t taken any the last few days ( getting nervous and questioning if they’re helping or hurting) Thank you for the resources, I will check them out.

Hikoi profile image
Hikoi in reply to MomoP

Whether on supplements or not our condition changes by the hour and we usually dont know why. The placebo effect is very strong in PD too. Its a very confusing disease which behaves best when it doesnt get too much attention.

Great advice!

"Parkinson's disease" Vitamin B1 use instructions : Join my Facebook group Parkinson’s thiamine hcl m.facebook.com/groups/23226...

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic.

Thirty years experience…

MomoP profile image
MomoP in reply to RoyProp

Hi Roy, thank you for your reply! I am 3/4 of the way through this book. It is leaning me towards trying levodopa? I’d like to walk normal and feel better. It is very informative and an easy read

ddmagee1 profile image
ddmagee1 in reply to MomoP

I agree with you and Roy, MomoP! My neurologist starting me on levodopa, helped me to walk much better, and to feel better!

Godiv profile image
Godiv in reply to RoyProp

I bought that book on Kindle, Roy. It’s really good and helpful like you said.

I agree with wifeofparky!

Art

MomoP,

You'll notice there are 2 groupings on this forum - those that are dismissive of supplements and recommend you only do what your neurologist or GP approves and those of us who believe more in functional medicine or that you can optimize your health by optimizing what you ingest ala Dr. Laurie Mischley. Problem with aligning yourself with the first group is that precious few neurologist have studied and/or been trained in the value of diet & nutrition of which supplements are a part.

The story of BI's impact on PWP community is a good one of many examples. It is undeniable that many PWP benefit from it, yet there is not good data supporting it's efficacy and precious few doctors have any idea how much benefit it provides.

I'm impressed with your list. It's a good one for newbie. I take many of the items on your list,

although I cannot say with certain any of them are a benefit. I take them because they are pretty benign and because I believe most of them contribute to optimal health.

MomoP profile image
MomoP in reply to MBAnderson

MB, Thank you for your reply! I truly appreciate it! I have been trying to research any and all avenues to help me along this journey. I have come across many studies suggesting many of the items listed. I am intrigued with Serrapeptase and Nattokinase. I have been taking them both regularly with no side effects hoping they reduce any misfolded proteins? I knew I had read other posts regarding various supplements. Thank you for reaching out! 😊

MBAnderson profile image
MBAnderson in reply to MomoP

Those are the 2 on your list I am unfamiliar with.

GaiaMia profile image
GaiaMia in reply to MomoP

Bacillus Subtilis - read the study.

MomoP profile image
MomoP in reply to GaiaMia

Thank you for the recommendation. I will check it out!

ladya2020 profile image
ladya2020 in reply to GaiaMia

Where do you get the bacillus subtilis?

GaiaMia profile image
GaiaMia in reply to ladya2020

Bio-KultMind

Probiotic Supplement

Bolt_Upright profile image
Bolt_Upright in reply to MomoP

Serrapeptase and Nattokinase. Interesting!

kevowpd profile image
kevowpd in reply to MBAnderson

I dont agree that there are two distinct groups, and i think potraying the forum as such promotes an us v them mentality that isnt helpful.

But: If you have arrived at the conclusion that, for example, the things in OP's list have the potential to have a non-zero impact on progression, how do you conclude that they won't accelerate the progression? Do we know enough about the pathogenisis of PD in every different possible subtype (or every individual, if we conclude that it is truly a snowflake condition) to say that they only have a chance of providing a positive benefit or no benefit?

MBAnderson profile image
MBAnderson in reply to kevowpd

There are 2 distinct schools of thought on this forum. One shares your belief that everyone should run everything by the doctor and only do what the doctor approves and the others, such as myself, don't share that belief.

There are PWP (on this forum) who believe they are progressing slowly and some say they feel better now than before they were diagnosed. Some even say they have become virtually symptom-free. Some of those people take prescription drugs and pursue alternative and complementary therapies, some follow a nondrug regimen only, but none follow a drug therapy only.

In other words, if your doctor is dismissive of nutrition and supplements and alternative and complementary therapies and you only do what they say, you have no possibility of slowing the progression. You would be turning responsibility over to someone who cannot improve your health and no one cares as much about your health as you do.

kevowpd profile image
kevowpd in reply to MBAnderson

Sorry, but you didnt answer my question, and you have mischaracterised my beliefs. Everyone is different here, and yes some people are disinterested in doing anything supplemental or adjunctive, and some people have serious cases of levodopa phobia, but most are somewhere in the middle.

You seem to be extrapolating condor's views to an entire 'group'.

Back to my question: how do you get comfortable that any individual supplement or combination of supplements won't accelerate the progression rather than slow it? Or that indivudially or in aggregate they wont cause other health issues?

MBAnderson profile image
MBAnderson in reply to kevowpd

Levod,

To answer your question, everyone is responsible for what they do/take, i.e., I don't take stuff I haven't checked out and don't have a high degree of confidence in.

kevowpd profile image
kevowpd in reply to MBAnderson

And how do you develop that high degree of confidence?

In Mischley's 2017 paper (the same one in which there is a progression chart that people frequently post), intranasal glutiathone, NAC and melatonin (amongst others) were all associated with faster PD progression.

MBAnderson profile image
MBAnderson in reply to kevowpd

kevowpd,

Would I be correct in guessing you are a doctor?

kevowpd profile image
kevowpd in reply to MBAnderson

Uh, no? Based on what? I havent even said anything about doctors. I am trying to get you to explain how you get comfortable with ingesting anything when the disease process is so poorly understood.

How do you know that something is benign in a PWP? Or more particularly, how do you know it is benign in you and your PD?

MBAnderson profile image
MBAnderson in reply to kevowpd

I don't know with absolute certainty, but if I thought knowing with absolute certainty was a viable criteria, I would subscribe to your school of thought - which is to do nothing but address symptoms a few hours at a time.

B1 would be the best example, because as I have repeatedly acknowledged, there is not good data on supplements and never will be, so those of us who are trying a number of things to slow the progression go by anecdotal evidence and the probability something is anti-inflammatory or anti-oxidative (or whatever, which account for nearly all the supplements I take.)

I could turn the same question back to you. The doctors who prescribe these pharmaceuticals have little idea what the effects will be on any one individual. They know what the studies say, i.e., what the odds are, but in reality they have no way of knowing a drug's effect will be on a particular individual. They send the person home with a prescription and hope for the best.

kevowpd profile image
kevowpd in reply to MBAnderson

"They know what the studies say, i.e., what the odds are, but in reality they have no way of knowing a drug's effect will be on a particular individual. They send the person home with a prescription and hope for the best"

Except that in the case of pharmateuticals for PD, the (appropriately blinded) studies actually exist, having been through 3 phases of testing, and measuring the symptomatic impact of PD drugs (for the individual) is a lot easier than guaging the progression altering impact of a drug or a supplement, and most of us are only using pharmateucical symtomatic treatments becuase we need them to function. So we accept some level of long term risk associated with their use becuase we need them today.

The same cant be said for supplements, or combinations of supplements that are only being used on a punt that they may impact progression in a desirable way.

You keep posting as if i am in the "doctor prescribed only" camp. I am not in that camp. If there was a pharmacutical being prescribed for progression slowing purposes that was as poorly understood as some of the supplements are, i would have the same reservations about that.

GioCas profile image
GioCas in reply to kevowpd

in your style… “ and most of us are only using pharmateucical symtomatic treatments becuase we need them to function. So we accept some level of long term risk associated with their use becuase we need them today.

so when these drugs no longer work what should we do?

By the way what medications do you use ? haven't you ever said that?

kevowpd profile image
kevowpd in reply to GioCas

I think your repeated obvious trolling of me is distasteful and disrespectful to the people attempting to have a meaningful discussion.

GioCas profile image
GioCas in reply to kevowpd

I'm sorry you think, but it doesn't seem so obvious to me. My point is valid and that is what happens when after 5 years the levodopa no longer works and causes dyskinesias? What can a doctor do? nothing.

If you don't want any objections to your posts just let me know, but this is the devastating ending to this disease that you don't seem personally worried about.

I asked you what drugs you use because in three months you have written hundreds of replies, but not a line about your case, not a line about your personal experience with the PD or with a PwP, you are very mysterious.

Sure you can write what you want and stay as mysterious as you can, but this mystery you keep about yourself responds more to the definition of troll you attribute to me and this, in my opinion, disrespectful towards the members here.

I do not think you are here to troll, but I think that a presentation on your part is a must to this community where you have been writing so much for three months, especially to new people.

kevowpd profile image
kevowpd in reply to GioCas

"If you don't want any objections to your posts just let me know."

That would be good, thanks. Unless of course you are commenting on the thread topic, and not just demanding personal information from me/otherwise trolling me.

MBAnderson profile image
MBAnderson in reply to kevowpd

kevowpd, I didn't read Gio's post as trolling you. I think you're being unnecessarily harsh and unfair. Asking what meds you take is asked several times/day of others. Hardly trolling. Far as I can tell, everyone answers that question - openly.

"... and not just demanding personal information from me/otherwise trolling me." Have you considered that sounds paranoid?

GioCas profile image
GioCas in reply to kevowpd

I want to help you, reread the definition of trolling here and tell me who the troll is:"Trolling is a game about identity deception, albeit one that is played without the consent of most of the players. The troll attempts to pass as a legitimate participant, sharing the group's common interests and concerns; the newsgroup's or forum's members, if they are cognizant of trolls and other identity deceptions, attempt to both distinguish real from trolling postings, and upon judging a poster a troll, make the offending poster leave the group. Their success at the former depends on how well they – and the troll – understand identity cues; their success at the latter depends on whether the troll's enjoyment is sufficiently diminished or outweighed by the costs imposed by the group."

en.wikipedia.org/wiki/Inter...

Despe profile image
Despe in reply to GioCas

Well said, Gio!

March 1, 2021

Country United Kingdom

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Hikoi profile image
Hikoi in reply to GioCas

GioCas,

“after 5 years the levodopa no longer works and causes dyskinesias? What can a doctor do? nothing.“

That is absolute rubbish and shows a very superficial understanding of drug treatment.

You continue writing this fallacy. Quite honestly I dont know anyone for whom drugs stopped working. They may not be as effective or need timing adjustment but they still work.

GioCas profile image
GioCas in reply to Hikoi

🌻🌺🌷😊

GioCas profile image
GioCas in reply to Hikoi

Hikoy, maybe we're talking about different diseases.

In addition, further quote on non-motor symptoms: "Inevitably, the development of treatments that can slow or prevent the progression of Parkinson's disease and its multicentric neurodegeneration provides the best hope of curing non-motor symptoms."

Right context
Hikoi profile image
Hikoi in reply to GioCas

What are the two attachments there for? They have nothing to do with levadopa effectiveness after 5 years. I really dont understand your post.

GioCas profile image
GioCas in reply to Hikoi

In the advanced stages of the disease, drugs progressively cease to work on motor symptoms by definition. On non-motor symptoms see above, i.e. they do not work from the beginning.

This is the context in which we operate, doctors and patients.

Hikoi profile image
Hikoi in reply to GioCas

You couldn't be more wrong. Clearly you only have a very superficial understanding of PD medications.

GioCas profile image
GioCas in reply to Hikoi

Things aren't more complicated than that. And yours is just an attempt not to answer on the merits.

Bolt_Upright profile image
Bolt_Upright in reply to kevowpd

NAC and Melatonin are associated with faster progression? Hmm, I take those. I need to find that chart.

kevowpd profile image
kevowpd in reply to Bolt_Upright

hindawi.com/journals/omcl/2...

You should read the whole article. Keep ib mind that the scores were self-reported by the PWP.

To be clear, i didnt post it becuase i am endorsing her conclusions. I mentioned it because it demonstrates to me that the PD waters are still very murky, and that it seems to me that certain things probably arent as free of risk as they are often made out to be.

Bolt_Upright profile image
Bolt_Upright in reply to kevowpd

Yes, I think you make a good point that if supplements can help, then they can also hurt.

Desperate times make people act in desperate ways. That's why snake oil still sells out.

But I am in the market for snake oil when the other options are nil. Who knows, I might scratch off a winner.

kevowpd profile image
kevowpd in reply to Bolt_Upright

"Yes, I think you make a good point that if supplements can help, then they can also hurt."

This was a much more concise way of making my point 😂. Thank you.

Bolt_Upright profile image
Bolt_Upright in reply to kevowpd

Now you really got me thinking. I have not been diagnosed with PK. I have REM Sleep Behavior Disorder which usually leads to PK or LBD. Before my diagnosis April 2nd I felt as good as I had ever felt. 192 lbs (15 lbs overweight) and enjoying an active life (for me. Played with computers and took care of my yard).

Since April 2nd I went keto, got down to 167 lbs, started a bunch of supplements, stopped and restarted my Prozac, and now see occasional tremors in both hands.

It's hard to put the genie back in the bottle, but cutting down my supplements and having a slice of pizza once in a while might be a good thing to do (but I'm not giving up y niacin).

parkie13 profile image
parkie13 in reply to kevowpd

Now, doctor Mischley is for melatonin.

Hikoi profile image
Hikoi in reply to MBAnderson

MBA, I think you assume too much. I dont recognize myself in either of those groups but I presume you would say I only do what my doctor approves of. How would you know that. Besides being very simplistic it is not true. I have always been in control of my medication regime. I am in my 14th year of PD and have taken levadopa for 13 years. I would like to hear from people on supplements only after 13 years. Do you know of anyone on the forum who fits that description?

MBAnderson profile image
MBAnderson in reply to Hikoi

Hikoi,

You assume too much when you say, 1) " ... but I presume you would say I only do what my doctor approves of. " and when you say, 2) "I would like to hear from people on supplements only after 13 years. Do you know of anyone on the forum who fits that description?" It feels like you have assumed my position is 'people should not take and do no need pharmaceuticals.' when I have consistently said, "The vast majority of people with Parkinson’s (PWP) a few years after diagnosis take prescribed Parkinson’s pharmaceuticals, consider them essential and are well served by them. While I am supportive of other’s decision to take prescriptions..." as is stated on the 1st page of my profile.

I read all your post and believe you research every thing your doctor says.

My symptoms showed up in '09, so I'm 12 years in. One short of your magic number of 13 and for all intents and purposes, I don't take PD drugs as is the case with everyone else who is largely unresponsive to PD drugs. So, yes, I recall many on this forum who fit that bill.

I am concerned, tho, that you think I advocate against taking PD drugs. I don't. My position is, as stated above, regards a PWP's relationship with their doctor, "... if your doctor is dismissive of nutrition and supplements and alternative and complementary therapies and you only do what they say, you have no possibility of slowing the progression. "

Marc

Hikoi profile image
Hikoi in reply to MBAnderson

“You'll notice there are 2 groupings on this forum - those that are dismissive of supplements and recommend you only do what your neurologist or GP approves and those of us who believe more in functional medicine or that you can optimize your health by optimizing what you ingest ala Dr. Laurie Mischley. “

Ah yes I see i misinterpreted you, you say there are those who only believe doctors and those who believe in functional medicine like you do. What is the purpose of such an arbitrary division. Is it helpful? Which category am I?

You go on to say “Problem with aligning yourself with the first group is that precious few neurologist have studied and/or been trained in the value of diet & nutrition of which supplements are a part.” That is true but the difference is I dont expect my doctors to be trained in this. Nor do I expect that I will agree with everything the dr suggests or says.

Interestingly I can remember my first very noticeable symptom in 2000 when i sought medical support. With a bit of research I could date symptoms earlier I know, but 21 years will do.

As to slowing progression with a barrage of supplements, i still believe alot will be flushed down the toilet. And you think alot on the forum have 13 yrs (or 21) just on supplements.? We read postings differently I think.

MBAnderson profile image
MBAnderson in reply to Hikoi

Hi Hikoi,

I trust you would agree that poor diet (& lifestyle (read; lack of exercise)) choices have caused an epidemic (at least in this country ) of obesity, diabetes, and a myriad of other chronic health issues, so I find it difficult to imagine that with diet having such a calamitous impact on the population, that it does not affect PWP at least as much.

Perhaps our difference (and I doubt if there is any at all, may semantic) is explained by my considering supplements to be a part of or the same as diet.

As you well understand, there are millions of delicately balanced, complex molecular interactions and processes taking place continuously throughout our body that are necessary for optimal health and many of the molecules involved cannot be synthesized internally and can only obtained by ingestion. Therefore, the functionality and efficiency of every single process in our body and brain is determined and limited by what compounds and foods are available for those molecular processes to interact with, that is, which molecules come down the gullet.

Supplements can be transporters, inhibitors, co-factors, precursors, substrates, chaperones, inducers, amino acids, proteins, enzymes, hormones, metabolites, etc. of these molecular interactions.

Of course there are gradients between those two cohorts. You, by your own words, are not of the first, which you'll notice is very narrowly defined.

I do think it constructive that people put some thought into the fact that since PD drugs provide symptom relief only and therefore, "... if your doctor is dismissive of nutrition and supplements and alternative and complementary therapies and you only do what they say, you have no possibility of slowing the progression."

Marc

ryzlot profile image
ryzlot in reply to kevowpd

There ARE 2 groups of people in the world... those who think there are 2 groups and those who don't

JR

MBAnderson profile image
MBAnderson in reply to ryzlot

You are wise comrade Putin.

Levod profile image
Levod in reply to MBAnderson

Hi Marc,

I think that that someone taking 20+ supplements/vitamins is at greater risk of doing harm than good. Where do all of these supplements/vitamins come from? How is their quality ensured (in their manufacture)? Do you say they are all safe? And then there is the broader topic of possible interactions. Do you say all of the possible interactions are benign too? I don't think you can say these thing...

MBAnderson profile image
MBAnderson in reply to Levod

levod,

We will continue to disagree re supplements.

I think the people on this forum are for the most part careful researchers and are careful about what they ingest.

I have concerns too about quality and purity and accurate labeling. That's why I invest in Consumer lab, Examine.com, Consumer Reports (and others) and check out most of what I buy.

Of course interactions are possible , but I assume everyone takes full responsibility for what we ingest.

I wish people did as much research on their doctor recommendations as they do on their own regimes.

I think an important difference is that I am not dismissive of C/L, as all the doctors I deal with are of my supplements.

Marc

Godiv profile image
Godiv in reply to Levod

I don’t know if this helps, but my doctor is an integrated physician. Granted she is not the one who treats me for Parkinson’s, but she is cognizant of the illness and she’ll check supplements for me regarding interactions with medications and my particular case. So there is that and it’s very helpful. Well it’s true there’s possibly an issue with quality control of supplements, at least there is this particular way of doing it.

pdpatient profile image
pdpatient in reply to Godiv

You mean your doctor is an osteopathic doctor right?

RKM

Godiv profile image
Godiv in reply to pdpatient

She has a regular degree not the DO. And then she added on to that and practices functional medicine. I’m not sure why I said integrative sorry.

Resano profile image
Resano in reply to Levod

Interactions between supplements themselves but also the risk of being compelled to drink the water of entire rivers each day, leading to overhydration and its ominous consequences: electrolytes imbalance, hyponatremia, Addison's disease, etc.

I’d narrow it down to B1 ( not for me but helps a lot of people) and mannitol which seems to clearly improve sense of smell and brain clarity. I’d also take the meds - as low a dose as possible to have a normal life while you can.

Your list is similar to the one an integrative GP gave me when I saw her when initially diagnosed. So many things…..

MomoP profile image
MomoP in reply to Astra7

Astra, thank you for your reply! That gives me confidence I’m on the right track!

Some people buy into the propaganda that prescription drugs can do no harm and supplements can do no good, but it is not true. Now, on to the particulars of what you have posted:

The MAO-B inhibitors do not do very much for most people, and that apparently includes you and me both. Taking tyrosine should be okay. You are probably thinking of tyramine (it is related to tyrosine but different), which should not be consumed with some MAO inhibitors.

High-dose thiamine protocol specifies thiamine HCL rather than Benfotiamine. The details of that protocol is set forth here highdosethiamine.org/

High-dose thiamine has been very helpful for me and may be responsible for my stable condition - non-progression - over the last several years.

There are a number of animal studies that indicate curcumin is beneficial for Parkinson's. It has excellent safety, and has many beneficial effects.

CoQ10 is also beneficial. It deteriorates easily and is best kept refrigerated.

The 5000 IU of D3 is the total dose and not x4 = 20,000, yes? Generally speaking, 5000 IU is a good dose. However, the individual response to vitamin D is highly variable - best to have your level checked at your next routine bloodwork.

Some recent research seems to indicate that it is vitamin K1 rather than K2 that is the essential form of vitamin K. I take a combo supplement that has got both.

Astragalus is a component of some traditional Chinese medicine combinations that did improve Parkinson's. In my case it caused dystonia (muscle tightness) so it did not work for me.

If you decide to try the mannitol, several small doses over the course of the day is best to avoid excess gas.

That is not everything but the does cover quite a few of your supplements. There are some other supplements that are beneficial but this will do for now.

MomoP profile image
MomoP in reply to park_bear

ParkBear, Thank you SO much for your response! I have read some of your other posts over the last few months and you are extremely knowledgeable so I appreciate your opinion! Yes, it’s 20,000, but I will cut that back. I am disappointed the Selegiline isn’t helping since I feel good, no side effects , not tired or dizzy but my motor symptoms are no better ☹️ I am nervous about dopamine agonists (?). I don’t want tiredness, dizziness or compulsiveness. I’d still like to drive and be independent. Again thank you for your reply! 😊

park_bear profile image
park_bear in reply to MomoP

You are quite right to resist dopamine agonists - too much risk of severe adverse effects in my opinion. Nothing wrong with a timed release version of levodopa, Sinemet CR or the generic carbidopa levodopa ER.

MomoP profile image
MomoP in reply to park_bear

Thank you for the insight

ion_ion profile image
ion_ion in reply to MomoP

20000IU a day of D? that's a lot and is dangerous if taken for many weeks. I took 5000IU a day for a while and I ended with calcium deposits on my palms; I stopped it and resumed later 1000IU a day and the calcium bumps disappeared.

I apologize for starting this fiery discussion. I appreciate everyone’s advice and input. Thank you all. And I appreciate your taking an interest in a newbie. Thank you for the welcome!

MBAnderson profile image
MBAnderson in reply to MomoP

Nothing to apologize for, MomoP. If Levod and I didn't want to disagree with each other, we wouldn't. We don't do "fiery" on this forum. Notice that Levod has been polite?

That is an impressive list. You got me interested in Astragalus now. I have Hashimoto's too, but half the sites I found say it is fine for me and half say it is poison for me :)

I agree with park_bear's advice, but I have to add Niacin. I just started Niacin Wednesday. It looks promising: lifespan.io/news/niacin-tes...

MomoP profile image
MomoP in reply to Bolt_Upright

Hi Bolt, No, I read people with autoimmune issues should NOT take it, so I won’t now.

At the end of the day,in my opinion you can read everything and anything you want and what people on here take for their PD,prescribed meds or supplements or both..But as the saying goes “ONE MANS MEAT IS ANOTHER MANS POISON” This awful disease is unfortunately so different for many people and each person reacts differently to meds/Supplements also there are so many sites and forums on the internet advising people to take these drugs or these supplements and some contradict each other and eventually it becomes a mine field of information to much to take in and can be very costly if you try everything what other people use ( I have spent a small fortune on supplements without much success) .. In the end each individual has to try and find out what works for them and their PD symptoms which unfortunately is easier said than done..My advice is to be careful of what you try both prescribed and supplements and only try one thing at a time as some could make your symptoms worse..Good luck in your journey with this Godforsaken disease

Be open to trying those things that appear to be helping others with limited side effects one at a time . Pre-check the possibility of interaction between supplements and other meds. and check on possible side effects, but do not treat your body like some experiment . Do all things with some moderation . If you are taking 10 supplements look at what 5 you can safely drop. The line between "supplements" and prescribed meds is very hazzy . Supplements are not " just natural harmless things and prescribed medicines are not unnatural nasty things to be avoided at your cost. Walk the middle road. If something is found that actually works you will hear about it very quickly from a million people so take outrageous claims with an open but skeptic mind. Agonists can be taken by some people with out problems but the problems may develop in time. I suggest that you hold that card until it is the last one in the deck and then use it. I swore I would never take them, then tried everything I could to stop and now they are my life line. I would be done without them. It is a very long road, try to be happy and start thinking less about medications and a lot more about exercise.

Welcome to the forum.

I would not be too worried about the number of supplements being a problem as if you listed all the compounds in real food it would be considerably longer! I look at them split into various groups. Vitamins and minerals. These are nutrition and might be necessary if you aren’t digesting or getting enough of them in your diet.

Enzymes - help digestion

Herbals like berberine can be antibiotic or anti fungal to kill off bad bacteria or fungi

Milk thistle for detoxing, ALA for chelating heavy metals.

Probiotics are to top up good bacteria although that can be disputed.

Other herbals like astragalus are adaptogen and are said to help immune system

CoQ10 is to help cell energy… etc.

Ie they are all doing different jobs. I suggest you categorise them into these types of groups and look at why you ordered them and what problem you are trying to solve. I like having that in a spreadsheet in an organised fashion with start date, amount , brand, where it’s ordered from, effects, but you could just have a large chart on paper. Some might do the same job so you might not need to take both. Look up interactions with each supplement and the drugs you are on to check they aren’t a bad combo. And make sure you are taking them with or without food as required and at the right time of day eg b vitamins in the morning as they can keep you awake and melatonin at night as it makes you sleepy.

It’s probably best to start each new thing one at a time and give it a couple of weeks before adding another new thing. Also make a note if you are feeling good or bad each day, and any trigger events that make you worse. Some triggers might not affect you for a day or 2 eg a stressful event might make you feel sick 2 days after. And a job you don’t want to do might make you feel sick the day before! This might be nothing to do with what you are ingesting.

I made a dairy every day initially and wrote all food, supplements, what we di and he rated mood and whether he felt well or sick out of 10 each day for about 6 months until we could get an idea of what was causing symptoms. Mainly it was stressful events rather than food or supplements.

Doctors are very reluctant to approve using any supplement unless it is pretty mainstream with many clinical trials as they don’t want to be liable if they don’t work out. But pharmaceuticals have the drug companies taking liability and are approved by government body so it’s not their fault if they cause harm. Also drugs are often funded so they don’t like prescribing things that aren’t funded. Some are interested to see results if you are self prescribing and others are very opposed to anything but the drugs.

I think some supplements and drugs may work better for some than others depending on what your main issue is and on your individual genetic defects.

If you can find a functional doctor they might be able to help you through getting genetic tests that show you where your issues might be. For example although turmeric is supposed to be good for people my husband has it as a “do not take” in his genetic report due to his specific genes. He was told to take b2, b3, b5, vitamin d, berberine, allicin, and various other things.

Also you might want to get heavy metal testing, organic acid urine test which can give you more information on what the problem is.

What ever else you do modifying your diet to eliminate any fake food, sugar, possibly gluten and dairy, eating less meat, more veges , whole grains etc and doing daily exercise including aerobic and stretching and strength work is the best first step.

Personally if you can use minimal drugs at first I think it’s better as lots seem to introduce new symptoms. If you haven’t been taking much for long I would concentrate on the lifestyle changes and be very strict on the diet and exercise and see how much improvement you can make there first.

Try these exercises.healthunlocked.com/cure-par...

MomoP profile image
MomoP in reply to LAJ12345

Hi LAJ, Thank you for your thoughtful reply and great advice!

Goodness what a list of supplements.It is good to hear you have some effectiveness when on Selegeline.When are you starting Levodopa ? I would be cautious about using so many supplements certainly at the same time.We all know that their is no cure for PD,and all the well tested drugs( available on prescription) which will help all increase dopamine to the brain.I would certainly ask when and why I am on not on Levodopa.Selegeline is a good drug,tried and tested.

No one is harassing you -- least of all Gio.

The wiser folks will respond regarding the supplements, but I wanted to congratulate you on being proactive. And welcome you to the club that we all don’t like LOL. You have to advocate for yourself which you are doing, which is great.

MomoP profile image
MomoP in reply to Godiv

Hi Godiv, Thank you! Yes, I am trying to be my own best advocate. I knew there was something wrong last Fall. My PCP didn’t think there was but offered to send me to a neurologist. The neurologist wasn’t sure what was wrong and wanted to wait 6 months to see if more symptoms arose. She did do a brain MRI looking for signs of a stroke since my motor issues were limited to my left side. I initially agreed to wait but decided 6 months was too long to wait. After that, my pcp said he’d refer me to wherever I wanted to go. I pushed to get into a great teaching hospital in my area. ( and was able to get in) At first I called John Hopkins in Maryland but they were not accepting new Parkinson’s patients. I was extremely happy with the thorough examination, and so far very happy with my Dr. Thank you for your words of encouragement! Yes, I am a reluctant member of this new club ☹️

Godiv profile image
Godiv in reply to MomoP

Good for you. I agree. Six months does seem like a long time to wait. And actually a lot of us had symptoms for years really. So it seems like you know just adding more time wouldn’t help. I’m glad you got a very thorough doctor. You’ll learn a lot on this forum and everyone is really nice about helping everybody else. They’re very knowledgeable. Yes this is definitely the club we don’t want to be in LOL, but at least we have each other. 🙂

Smittybear7 profile image
Smittybear7 in reply to Godiv

I agree.

Godiv profile image
Godiv in reply to Smittybear7

👍👍

Hi MomoP

In my brief experience of the condition, the thing that has made the most difference is regular and intense exercise, supported by use of redlight. The benefits are well documented, albeit only recently.

This may also depend on the type of Parkinsons presenting however.

Swallowing something is probably easier though.

It is a often bit hard to know with many supplements, there are clearly a broad range of opinions on this aspect.

regards

MomoP profile image
MomoP in reply to MN1066

Hi MN, I recently acquired a recumbent bike and I plan to start using it every day, starting off slowly. I will look into the red light therapy!

Smittybear7 profile image
Smittybear7 in reply to MN1066

Where do you get red light therapy? I am in Pittsburgh PA.

Is that the same as photobiomodulation?

Yes, photobiomodulation (PBM) is the most current term used, although red light therapy (RLT) remains a popular term. PBM is a broader term encompassing RLT and invisible near infrared (NIR) light. Maybe others, too.

I've never been to a light therapy "clinic" but instead opted for a portable at-home unit--a book-shaped one with 60 LED lights, half red, half NIR. Very convenient. About $170 from Hooga Health.

hoogahealth.com/collections...

MN1066 profile image
MN1066 in reply to Smittybear7

details are at the website wellred.com.authat is the device that I use

in comparison with other devices, appears to be a reasonably priced option

gginto profile image
gginto in reply to MN1066

Agreed- Exercise........THE most important thing of all to delay, ease, the symptoms of PD (and any other condition for that matter)

Ok k TV

L

Oki

I was diagnosed with Parkinsonism in based on weakness on my dominant side, tremors and dragging my dominant foot. I did acupuncture and glutathione IVS and supplements No meds. Physical therapy and occupational therapy, chiropractor and muscle therapy. Definitely helped me. I am currently working with a nutritionist/pharmacist who knows drug interactions. I'm taking some of the same supplements that you are taking. I have heard people have had success with restore gold.

The addition of b1 has helped many.

Dr Martin Gallagher is a medical dr, chiropractor, acupuncturist, nutritionist just to name a few qualifications. He has a call in radio talk show on Saturday mornings. 9-11 on 620am.412-825-62622 contact medical wellness center 800-834-4321

Dr Sass is a nutritionist/pharmacist .He has a radio talk show on Wednesday at 12 pm. It's a call in program also 620am *(radio station)

His website is drmartingallagher.com

Both have patients from all over the world and might be able to help you.Good luck to you. I think you are doing the right thing .Both those drs are in Pittsburgh PA

I don't have a website for dr sass ..

MomoP profile image
MomoP in reply to Smittybear7

Thank you Smitty! Are you in Pittsburgh?

PD is like snowflakes... no two cases are exactly the same. But for newbies (i.e., those just diagnosed), I say four things:

1) First of all, the world did not end. If you are past 60, you probably have had it for years and, even without meds, it may be a very slow progressing case. My diagnosis with Parkinson's Disease in September 2013 at age 70 gave my life a new focus and challenge. Finding ways to meet this challenge helped make the last few years some of the best year of my life.

So don’t assume the worse.

2) GP doctors are for the most part clueless. If, you haven’t, get yourself to a neurologist who really knows PD and try whatever they recommend until together you find what works for you.

3) EXERCISE IS BY FAR THE BEST MEDICINE so get up and start walking, use hand weights, shadow boxing is great. Do what you can this week and next week do more. I am in better shape and look better, so I have been told, than I was before I was diagnosed. Don’t lie around with the dogs unless you’ve just taken a run (trot... up paced walk) with them and they’re tired. Bottom line: GET MOVING!

4) Lastly newbies.... you need to understand that there are meds that treat the symptoms and there are others that may slow progression. I take Carbidopa-Levodopa four times a day works to reduce my symptoms.

But I also take Azilect because my neurologist (god bless him) believed there was evidence that it substantially slows progression in some patients PARTICULARLY IF YOU GET ON IT EARLY. Recent studies have supported that, but it varies by snowflake. BUT it apparently has worked well for me. I have seen blogs where PD’ers have stopped taking it because it didn’t help their symptoms only to find their symptoms got worse.

My recommendation if you are recently diagnosed and are early stage is get on Azilect (generic Rasagiline) ASAP! It is not terrific at treating symptoms, but it very well may significantly slow your progression.

DON'T WAIT ON THIS BIG GUN!

Perhaps I am just one of the more fortunate PD’ers. I am only stage 1.5 and, more significantly, I have remained there for eight years. I am 77... I still work... I walk everywhere. A couple years ago, I ocean kayaked in the Sea of Cortez... something I would not have done at age 72 before I was diagnosed.

pdpatient profile image
pdpatient in reply to 4000Nights

Inspiring personal story indeed and impressive indeed at the age of 77. I think your story illustrates the importance of attitude and grit. I see no hint at self-pity or woe-is-me in your post. Very nice and commendable.

Thank you for your insights. All YOPD patients can learn a thing or two from you.

RKM

MomoP profile image
MomoP in reply to 4000Nights

Thank you 4000 for the great advice! I will take it to heart! I was started on Rasagiline as my first medication ( and only Rasagiline). It didn’t touch my symptoms and made me dizzy and tired all the time. I was taken off and started on Selegiline. Same class of drugs, and that too hasn’t changed my symptoms. Two years ago I started having restless leg. I wonder if that was a sign of things to come? I was devastated when I was diagnosed in March. But now, I am trying to stay positive. I am grateful it has so far only affected my left, non dominant/ non driving side. No tremors so far. My walk is awkward and my left foot tends to drag behind. Thank you for reaching out and sharing your thoughts!

alaynedellow profile image
alaynedellow in reply to MomoP

I find ragasilene makes me unwell but Azilect is fine and have taken since dx. You may be reacting to the coating (?) on ragasilene- its a form of azilect which is the brand name

Seems like there are 2 groups on Supplements - 1) Group that thinks it's all hogwash and you are throwing money down the drain ie: "supplements will end up in your urine", and 2) Group that have done some research and are optimistic to try something (most likely along with drugs) that may help give relief, and improve the symptoms.To simply disregard supplements in general and laugh at someone who wants to give them a try- I believe is wrong- Oftentimes these individuals haven't done the slightest investigation themselves on the topic.

If one digs deeper into researching supplements, you will see there IS legitimate research and trials done on anything from wheatgrass juice to B1, grape seed extract, magnesium, curcumin, acai berries, Omega 3....etc.

Personally, I exercise daily, stretch, meditate, try to get plenty of rest, cut out carbs and junk food from my diet, eats lots of organic fruit and veggies, eat wild fish, drink purified water...to name a few, AND yes add supplements to my diet that I have done extensive evidence-based research on.

For one, I recommend the Healthline website. This site really scrutinizes what they are investigating- they also back up all info with evidence or no evidence of benefits.

We need to take responsibility and read as much as we can on PD ... drugs are very important to ease the symptoms, but there are many other things we can do to help ourselves,,, Good Luck!

Happy to...

I take Carbidopa-Levodopa four times a day works to reduce my symptoms with no side effects.

I am not a doctor... but I would recommend you get back on Azilect and hope your body adapts to it, then introduce low dosage Carbidopa-Levodopa.

Hi MomoP, I was diagnosed at 47 and now I am 55. When I was diagnosed my doctor prefered not to give me levodopa, until I told him I was about to making my decision to quitting my job because I was so tired. I remembered another doctor telling me: you don´t have to be petty with the levodopa; when the patient needs it you must give it to him. I don´t think that any of that supplements will make the change you need in your motor syptoms. And I also agree that supplements interact with medication, and it is not an easy puzzle. What you don´t mention is if you are exercising, how much, because it is the real key to slow progression. And besides, one of the more important thing to do is to keep stress away; as I use to say: Stress is for Parkinson´s the same that Kriptonite is for Superman. I found in journaling my best therapeutic tool, and after 5 years of writing inside my shell, I decided to publish them. The book´s name is Rebirth at 50: in the end, it was not The End. I am sure it will be good to you to read it. Find your path!

MomoP profile image
MomoP in reply to fcerruti

Hi fcerruti! Thank you for your reply and insight. I have come to the realization that I am only confusing myself with the potential to hurt myself. I’ve had 2 bad days this past week, bad enough to go to bed for a few hours during the day. And I don’t know why. I suspect increasing B1. I am off the supplements and only using Mannitol. I believe it is making a difference. I am walking better, not normal but better. And yesterday I did some household chores. I will continue with the Mannitol and follow up with the Dr if I feel I need Levodopa. Weird thing is, my RLS has been gone for a few months. The last two days my motor symptoms have been improving, the RLS has come back? Take care and thanks again for taking the time

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