Meds, Supplements and Vitamins . . . Yay or Nay

[aridin1966]

My husband, who is 53, was diagnosed 5 years ago with Parkinson's. He is a Stage 4 colon cancer survivor of 15 years. He was a soybean, rice and crawfish farmer until 2 years ago. Now he stays super busy, from sun-up to sundown, with the cattle and horses. He's in constant pain in his lower back . . . all the way down his right leg. 3 years ago he had neck surgery which didn't seem to do much of anything for him. He's had 2 epidurals - the 1st one helped and the 2nd did absolutely nothing. We life in South Louisiana, United States. The doctor's around here seem to be "cookie-cutter" We go once every 6 months. He makes hub walk and squeeze his middle finger and thumb together, says yay or nay on the meds and sends him on our way. SOOOOO FRUSTRATING.

I stumbled on this awesome community last week. I 1st read about Ubiquinol 2 years ago and he's been on it ever since then. Of course, NONE of the Doctors around here know anything about this supplement. I/we feel helpless. I started reading about the different supplements and vitamins and I've compiled a list of what we're thinking about adding to his regular meds.

AM: 1-Mirapex 1 mg, 2- Rytary ER 36.25 mg - 145 mg, 1-Vitacost Synergy Ubiquinol CoQH with Kaneka QH 100 mg, 1-Vitacost Selenium 200 mcg,1-Dr's Best Vitamin D3 5000 IU, 3- BIOSchwartz Premium Ultra Pure Turmeric Curcumin with Bioperine 1500 mg

NOON: 1-Amazon B Complex, 1-Vitacost B1 500 mg, -21st Century B-12 1000 mcg and 1-Vitacost Magnesium 400 mg, 1-Bronson Resveratrol 500 complex

PM: 1-Azilect 1 mg, 1-Mirapex 1 mg, 2- Rytary ER 36.25 mg - 145 mg, 1-Lyrica 100 mg, 1- Plavix 75 mg, 1-Uloric (prone to gout) 40 mg, 1-Himalaya Mucuna (stem) 350 mg/(Mucuna pruriens 6% L-dopa, 15mg) 250 mg, 1-Nutricost L-Theanine 200 mg, 1-Natrol Melatonin 10 mg

The weather around here is in the 40's one day and 90's the next. Sunny/rainy, cold/hot, muggy/dry at any given hour of the day . . . all this just to say, he hurts all the time. Dr's can't seem to find what's causing the pain. I've suggested it's the Parkinson's and they look at me as if I fell from the sky. I'm not sure if any of you can understand my babbling but if you do, PLEASE offer suggestions. If anyone is in Louisiana or nearby states, please drop me a line. I've read so much within the past week, my brain is mush. Thank you all in advance.

[park_bear]

Excellent that you have listed his medications! So many come here without doing so.

Doctors are propagandized to believe supplements can do no good and prescription meds can do no harm, so don't expect help from them on that.

Consider yoga for his back.

[aridin1966 in reply to park_bear]

With all of the supplements and vitamins I listed, I'm afraid one clashes with the other. He's still very active but I've noticed his off times are becoming more frequent . . . right hand tremors and right leg drags. Of course, he's been doing more around the place getting ready for the Christmas crew.

[park_bear in reply to aridin1966]

I should mention that I was suffering from chronic lower back stiffness until I realized it was because I was leaning forward when I walked. It takes a consistent and deliberate conscious effort for Parkinson's patients to stand up straight when walking. I have undertaken to do my best to do this and this helps my lower back considerably.

[condor39 in reply to park_bear]

Your anti-doctor bias is showing. All doctors need is evidence, and this does not mean anecdotes .

If any supplement worked , we would all be using it - but floundering about using one or more of the hundreds of supplements mentioned on the website - does not archieve anything, unless you like false hope.

[park_bear in reply to condor39]

I am not anti-Doctor, but doctors are often ill-informed and don't know it. Here is my reporting on cheating in pharmaceutical trials that results in serious adverse effects of prescription meds being concealed from both the public and physicians:

When Good Doctors Prescribe Bad Medicine

tinyurl.com/zvgcu79

Here is my story of how a particular herbal combination was shown in a randomized controlled double-blind trial to be as effective as prednisone for asthma relief, yet without the adverse effects of prednisone. To my knowledge no western doctor has ever prescribed it:

Alternative Medicine - Relief from Severe Asthma

tinyurl.com/y8so37j8

In addition, both myself plus a couple of thousand other Parkinson's patients are benefiting from high-dose thiamine, while the proponents are going begging for funding for a proper trial. If this were a for-profit prescription med that trial would have been funded long ago and it would now be in all the headlines as a miracle drug.

[faridaro in reply to condor39]

Condor, you are absolutely right about doctors needing evidence, however the problem is that most supplements don't undergo expensive clinical trials as there no profit on marketing them later. And even looking at the clinical trial evidence, if you learn that the trial was performed by the drug manufacturer (which tells you that there is a conflict of interest) and look into details of the trial you may find out that there is a lot of cover up. This week I was prescribed Apixaban as a blood thinner and looking into its clinical trial data (which was done in China) I found out the following:

" An analysis of publicly available documents describe FDA inspections of clinical sites in which significant evidence of objectionable practices reported seven official-action-indicated (OAI) events for Apixaban trial. OAI events represent the most severe classification of FDA inspections. In this case, events included falsification of data and inaccurate adverse event reporting."

Even though it was eventually approved by FDA with 9 months delay, some data is very questionable. As a result I am going to ask for a different anticoagulant.

[condor39 in reply to faridaro]

There must be over 100 suggested supplements mentioned on this site alone. To get approval requires studies in at least five different locations, and costs I am told , $300,000,000. As only one drug in three gets approved, the cost is $900,000,000.

Therefore it can be understood why companies will only chose to investigate drugs which are likely to succeed .

Some contributors to this site seemed surprised and shocked to find that pharmaceutical companies (and doctors!) are not perfect. But they are responsible for many life saving medications.

[park_bear in reply to condor39]

Companies will only chose to investigate drugs which are likely to succeed AND BE SUFFICIENTLY PROFITABLE.

[condor39 in reply to park_bear]

I thought that was too obvious to say.

[park_bear in reply to condor39]

Very well, point taken.

That said, the expense of trials and necessity for profits results in promising unpatentable treatments going untested and cheating for compounds that do get tested. Cheating includes the now common practice of a pretrial "washout period" where patients who cannot tolerate the treatment are excluded from the trial and not counted as experiencing adverse effects. So, for example, the reported adverse effect rates for statins are minuscule whereas in reality such numbers are quite substantial.

[Hidden]

I had screaming pain down my leg. One epidural worked. I say don't use inversion table. One week and I ended with hernia.

[aridin1966 in reply to Hidden]

One thing leads to another . . .

[Astra7]

I think azilect is most effective taken first thing in the morning.

Also has he seen a chiropractor?

[aridin1966 in reply to Astra7]

We've talked about a chiropractor but he's afraid because of the work done on his back.

[Astra7 in reply to aridin1966]

I can see his point. You’d need someone you could really trust.

[Hidden]

It is difficult to try and make suggestions without a diagnosis of what is causing the pain. You mention lower back and right leg pain which can be caused by many things. The fact that he is doing very physical work is going to make the healing process long and slow.

Here are a few suggestions for things I have used for back issues in the past and you should run these by his doctor to make sure they will be safe for your husband to try.

First try topical magnesium chloride oil in a spray bottle(mag oil). Apply to the entire back, neck, butt, stomach and legs. If the feel of it on the skin is not comfortable, apply a small amount of body lotion on top of the mag oil. The mag oil can do several useful things. One, it is anti-inflammatory, two, it helps relax the muscles which can relieve pressure on the spine and nerves and three, it can relieve some nerve pain in some people. Fourth, magnesium has other benefits to the body, especially the heart and brain and can help to relieve muscle cramps related to PD. With body wide application of this type, it can also have a mild laxative effect if constipation is also an issue as is often typical in PWPs. I have never noticed a difference from one brand to another so the cheapest is likely to be similar to the most expensive. Here is a link for a fairly inexpensive one :

amazon.com/Life-Flo-Magnesi...

This less than $10 bottle will be enough to find out if mag oil will offer your husband significant relief. If it does, you can then make your own mag oil much less expensively as I have outlined in the following link. I should mention that even though oral magnesium is very good, it can not do what topical mag oil can do in terms of pain relief. I have written about mag oil here for more information:

healthunlocked.com/parkinso...

Another effective topical pain reliever you can try is to take an ibuprofen softgel and puncture it with something pointed like a toothpick. Squeeze the contents into about an 1/8th ounce of body lotion in a small container like a shot glass. Use the leftover toothpick to mix the lotion and ibuprofen together. Apply the mix to any painful areas. I have outlined this in the following post :

healthunlocked.com/parkinso...

Another consideration if you and your husband ever decide to test HDT is that some users have gotten pain relief from using HDT along with the other benefits associated with its use in PWPs! I have written about HDT here for further explanation on its many benefits in some PWPs:

healthunlocked.com/parkinso...

More recently I have been experimenting with a couple of homeopathic remedies which are also quite helpful, but a bit more expensive, so the first two options may be a little easier on the pocketbook and the magnesium is good for the body and PD overall so if it is effective for your husband, that would be easiest and sufficient until he gets a proper diagnosis! Remember to get his doctor's approval before using any of these and good luck! Please keep us posted on his results because "pain" is a very common symptom in PWPs and your feedback could potentially help others who are in pain!

Art

[aridin1966 in reply to Hidden]

Thank you Art. I've read several of the links you posted. I'd like to try doubling his B1, to start, but I'm concerned as to what it would do. We just rec'd 600 capsules of the Vitamin B1 as thiamin HCI 500 mg.

Amanda

[Hidden in reply to aridin1966]

One I didn't mention because I don't know if it is legal where you are, is medical marijuana. They have a newer CBD / THC blend that is 30 CBD : 1 THC that I will be trying in an upcoming experiment that I will post about later. I have tried a 1 CBD : 3 THC blend previously and it is helpful, but this 30 : 1 blend is supposed to be even more useful for pain relief. The downside is that it is not legal everywhere and it is expensive as I just paid well over a hundred dollars for a one ounce tincture!

Art

[aridin1966 in reply to Hidden]

We're in Louisiana. $100 an ounce will be out of our reach.

[Nitro53 in reply to Hidden]

I use 20 cbd to 1 thc. Didn’t know you could get. 30 to 1

[Hidden in reply to Nitro53]

They told me the 30 cbd : 1 thc is a relatively new blend, at least for this dispensary.

Art

[Hidden in reply to aridin1966]

On the B-1, I always recommend you contact Dr. Costantini direct because he is down with responding to email patients and will help you zero in on the optimum dose the quickest because of his years of experience with HDT in combination with standard PD meds since he is first, a neurologist. The problem with not using him is that if the symptoms worsen to a new high, which is possible, it is too easy for fear to take over your decision making process and just assume that it doesn't work for you and then stop taking it altogether, when all that is probably needed is a dosage adjustment in the right direction. Dr C. is a great and compassionate doctor and works very hard to help all of his patients. If your husband happens to be a responder to HDT, the extra effort in contacting Dr. C, will likely be worth every second you spend doing so!

Keep us posted!

Art

[aridin1966 in reply to Hidden]

Thank you and I believe I WILL drop him a line. We've nothing to lose at this point. We can't just sit here and watch "it" progress!

[2donkeys in reply to Hidden]

Thanks so much for this Art. I purchased magnesium oil for my husband but I think I'll try it for my neck and shoulders! I've gleaned so much information from your posts, thanks for all your research and sharing!!

Jennifer

[aridin1966 in reply to 2donkeys]

I agree. Art is a PWP's encyclopedia

[Hidden in reply to 2donkeys]

Please let us know how the mag oil works for your neck and shoulders and also for whatever your husband is using it for. Knowledge is our power base and feedback gives us more knowledge!

Art

[Hikoi]

Aridin, i go down the conventional track and looking at his meds I think they could be adjusted to give him better quality of life. His pain could be sciatica.

Can I ask why he is on retry and does he like it. did he try any other levadopa formulas?. It seems to be quite difficult to get the right balance with it. He takes no meds mid day so he has a long time without levadopa, it doesnt last very long in the body so I doubt he is well medicated for someone 5 yrs on. You could get a second opinion, I would ifyou feel your current neuros dont know enough.

Except for VitB i have little faith in other lternative meds being strong enough to treat PD. I also suggest it is worth checking what stage /yr post diagnosis a person is when they give you advice. What works for year 2 may not for someone yr5 for instance. And I would keepp thesurgeon away! Stiff necks are extremely common in pd as are sore stiff shoulders and lower back pain!

[aridin1966 in reply to Hikoi]

Thanks Hikoi. When would you suggest I give him the B1? AM, NOON, PM.

[park_bear in reply to aridin1966]

I take my high-dose vitamin B-1 first thing upon awakening, and a second dose sometime in the afternoon.

[aridin1966 in reply to park_bear]

I'm sure you've answered this question at least 100 times or so BUT are you on Azilect, Mirapex and/or Rytary?

[park_bear in reply to aridin1966]

I take a little bit of generic Sinemet CR. None of the others mentioned.

[Hikoi in reply to aridin1966]

I dont know. I only take meds because they work, I have no confidence in other hopeful alternatives. Vit B isthe only thing I consider worth trying and Constanti also uses conventional meds. But I havent yet tried it.

[MBAnderson in reply to Hikoi]

Hikoi, would you share more of your thinking as to why you have little confidence in alternative meds, i.e., supplements?

[Hikoi in reply to MBAnderson]

It is late, a quick respose:

Show me people who have reversed or stablised their PD with alternative medicine. I haent met any. This article says it all far better than I can. Fear and hope, the motivators.

psychologytoday.com/us/blog...

[MBAnderson in reply to Hikoi]

Hikio, Thank you.

But, what about all the PWP on this forum who report diminished symptoms and/or feeling better now than they did before they were diagnosed? I read such posts every day.

[Hikoi in reply to MBAnderson]

That does nothing to convince me. I have commented before on this subject on another thread. I dont think people on here are telling untruths but nobody on here has convinced me that they have reversed pd from what i have read.

Anyway all the posts are without real context so for instance you can no longer use a mouse because of tremor, right? But you may also write how well you are. My idea of wellness and yours may be very different but without an external measuring device how do I know that what you write is what i read? Does your idea of wellness mirror mine ?

Fear and hope can drive people to believe with very little evidence. Thats what I am more inclined to notiice than peoples claims.

The only alternative i have noticed with interest is thiamine, there may be one or two other sustances that may be proven to make a difference but none stand out and there are so many now I get bambozzled.

The desire for something to be true is powerful and i notice it often in both writer and responder. It doesnt make it true. A poster once told me she would rather unrealistic hope than no hope. But I dont think that is the choice on offer. Accepting that this condition is degenerative and progressive is not pessimistic it is realistic. Its how I respond to that knowledge that is important.

[MBAnderson in reply to Hikoi]

The comparison that matters is not between 2 people, you and I, but one person comparing themselves now to how they were before. I think PWP as a cohort, are in pretty close touch with how we feel. Both can be true that I don't use mouse and also that I am doing better than I have previously.

That you agree that some supplements may be of some benefit to you is what I was getting at. You just don't think as many are as beneficial as many on the forum believe or hope. In other words, what we ingest matters.

[Hikoi in reply to MBAnderson]

But comparing myself to how i was before isnt as straight forward as you imply.

I dont think suppements are worthwhile on the whole especially when used as treatment instead of conventional meds.

I really do think this is largely ( but not exclusively) a north American issue. The miracle workers get alot of US air time and credence it seems.

So where are all these people.....

[MBAnderson in reply to Hikoi]

I agree, measuring how we feel is tricky. I won't name people because I don't want to put them on the spot, but someone said just yesterday they're feeling better now than they were at diagnosis and attributed to supplements. I feel safe in saying I've read a dozen posts of people reporting they feel better now than they did before.

[MBAnderson in reply to MBAnderson]

PS. I agree, the gurus are offputting. I pay little attention to them.

[Hikoi in reply to MBAnderson]

I feel better because of supplements!?

So how does one know it is not just the passing of time that makes one feel better or

Placebo effect

Psychological acceptance

Taking some action such as taking vitamins

Exercise

How could I accept that simple statement without contextual information.

Of the posts I have read are they all taking the same supplements to feel better? If not what does that tell you?

Tell me what your wife thinks?

[MBAnderson in reply to Hikoi]

Hikoi,

You're not totally dismissive of supplements, so we don't disagree that some supplements are beneficial to some people and what we ingest matters, which are the only points I want to make.

Yes, a lot of the people are taking many of the same supplements, but to the degree to which they are not only shows that some supplements may be beneficial to some and not others.

My wife is not certain I've gotten better, but she is certain I have not gotten worse over the past year. Because neither the progression, nor any improvement is ever linear, I'm often ambivalent.

I resumed using a mouse, but I'm not going to bother trying to type. (I'll update my profile.)

I adjust for a placebo effect and believe that the people who say they feel better and/or have reduced some of their symptoms, have done so and are convincing. Their descriptions our detailed and nuanced and credible enough for doctors to act on. Who am I to say they're wrong.

I believe that some combination of all the supplements and compounds I'm taking are slowing my progression, in part because they're intervening in some of the other maladies triggered by PD, but there's no way to know that because there is nothing to compare it to, i.e., without supplements, I might've progressed more.

If money were not the consideration, there'd be little reason not take a couple dozen things.

[jimcaster in reply to Hikoi]

Here is one notable person.

fight-parkinsons.org

[Hikoi in reply to jimcaster]

I looked at his fb videos. From 2014 to now His videos to me show a man who is declining in physical health. He is looking older, husky voiced, bradikenesia, marked disability right side, tremor. Some may be convinced he has reversed symptoms but I am not. Im not sure he says which symptoms he has improved either.

I have a friend 9 years post diagnosis on no meds. I know it can be done especially if you have a partner to smooth the way.

[MBAnderson in reply to jimcaster]

Sarah King does a good interview of Colin Potter.

[Hidden in reply to aridin1966]

What some folks have found is that taking a HDT dose too late in the day can cause sleep issues (insomnia), but others have no problem whatsoever taking a dose later in the day. Dr. C obviously is going to recommend the earlier dosing to avoid having to deal with that problem at all! In fact, for those on a relatively low dose of 1500 mg/day or less, Dr C has been known to suggest taking it all in a single first thing in the morning dose which makes it a much simpler protocol for those who are lucky enough for that method to be effective!

All of this aside, it still appears that the ones who follow Dr. C's guidance and suggestions, on average, do the best and get the quickest finding of their optimal dose!!!

Look at questions and answers #13, #20 and # 34 at the following link for Dr. C's opinions on this subject :

healthunlocked.com/parkinso...

Art

[LindaP50]

Acupuncture can be very effective with pain and helping body relax. We go to a place where its community -meaning several people in one very quiet room, all sitting in a recliner with a blanket over body (if you want), soft music. Acupuncturist asks you before applying the "pins" what are your ailments then places pins appropriately. Payment is $20 or $30 depending for up to an hour. Works wonders. We went once a week for several weeks now go once a month. Would go more but with supplements and doctors bills we try to keep costs down.

My husband has Lyme Disease and Parkinson's Disease which both affected his movement. Cannot walk long distances and has a hard time getting up from a seated position. His voice is very very low - I pray daily he doesn't loose his voice completely. He can talk a bit louder but needs to be reminded so I say "loud" and then he goes up maybe if I'm lucky at least an octave!!!

He takes turmeric, cinnamon and magnesium. Our primary doctor said these are good to take. The neurologist (for Parkinson's Disease) doesn't even want to know what supplements he takes.

Husband takes 2 carbidopa/levodopa 3x daily.

[Hidden in reply to LindaP50]

In my area of the country, you have to add a 1 in front of that $20 or 30 to get in to see a popular acupuncturist!

Art

[jackedmonston]

You've gotten plenty of advice. I just want to add my own story of back pain in case it may be useful.

I live in an area with leading edge medicine (Boston area), yet I spent two months of sciatica (pain shooting down my leg) working with Chiro and PCP with no change before a nurse friend sent me to a neurosurgeon, who did an MRI. The MRI showed that the wall on one of my disks had blown and the material inside (gristle, he called it) had flowed out and was sitting on my sciatic nerve, which was visibly swollen. The doc said he could simply remove the gristle and the problem should be solved. And that is exactly what happened. Complete relief in 24 hours.

Not all sciatica cases are alike. Sometimes the wall is just bulging, not blown, and it can return to more normal size all by itself. (There is a painless back stretching machine that may speed its return.) Sometimes the problem is stenosis (narrowing of spinal canal) and there are other treatments for that (like radio frequency ablation). Sometimes they have to fuse bone to get relief. But I would start with a neurosurgeon and an MRI.

As for Louisiana being behind the times, I was in the Army, stationed at Fort Polk (Louisiana) in 1965. You couldn't easily go off post with a black soldier in your group as at least that part of the state (Texarkana area) was still fully segregated.

[aridin1966 in reply to jackedmonston]

Lord, don't EVEN get me started on the state of this State! I am currently searching for a MOVEMENT SPECIALIST within a few hundred miles of home.

[MBAnderson in reply to jackedmonston]

I was in Fort Polk in 1965.

[aridin1966 in reply to MBAnderson]

Thank you for your service. We're in the heart of Cajun Country. Most of us have never met a stranger Our motto in this family is, you're welcome at our table, have a bite to eat, a hot cup of coffee or even a high-ball or two BUT, you get slippery with us, don't come down this driveway again!!

I'm very thankful for all the input from everyone. I actually look forward to reading everyone's posts and comments.

Thanks for the convo

[MBAnderson in reply to aridin1966]

Thank you. Same for you. Ironical to be at Fort Polk at the same time and meet up again on a PD forum 53 years later. Is your PD service-connected?

[MBAnderson in reply to MBAnderson]

Good motto.

[jackedmonston in reply to MBAnderson]

Thanks for speaking up. It’s good to hear from a fellow grunt. Fortunately my unit never got called up for Nam, so my PD is not related to my service. Do you think yours is?

[MBAnderson in reply to jackedmonston]

Yes, we used to watch the planes fly over spraying the stuff and it would drift down on us. It seems to me, anything that would defoliate a rain force in 4 or 5 days had to be toxic to people and everybody knew it. I don't have fond memories of Fort Polk.

[jackedmonston in reply to MBAnderson]

I think you were right about neurotoxins in defoliants. Seems so obvious now.

[SilentEchoes]

I was struck by your comment that your husband is dragging his leg. Shuffling comes with with PD, but dragging (foot drop) could be something else. A second opinion on his diagnosis is reasonable, and given your frustration with his doctors you intuitively know he is not getting the care he needs.

[park_bear in reply to SilentEchoes]

No. Foot dragging on the affected side is classic PD.

[SilentEchoes in reply to park_bear]

The foot drop can be caused by something other than PD and there can be comorbidities and even a misdiagnosis. If it were me, I'd get another opinion.

[park_bear in reply to SilentEchoes]

It is true that foot drop can be caused by all manner of maladies. However, only one of those maladies is responsive to levodopa. If levodopa medication does not alleviate the foot drop then it would be cause to seek another diagnosis.

[Jumex2017]

I was told that Azilect should be taken when he wakes up in the morning and no food should be given till at least 3/4 hr after for it to be most effective.Also my husband tried fast walking for 10 minutes first thing in the morning (John pepper's advice) and he says he feels very good subsequently. He also takes B1 and the change in him was that he is able to walk much more.Though with the wrong dosage it can be worse.So Please write to Dr C and follow it through. He starts you a dosage according to your weight.

[alexask]

As Hikoi has indicated his pain sounds like Sciatica - I had a bit of this and found some of these exercises helped get rid of it:

youtube.com/watch?v=6HOvGr6...(Not working as expected?)