Hubby has been taking rhodiola now for a month, 1 per day for 2 weeks then 2 per day. He is doing very well this winter considering usually winter is when he falls to pieces. He is better than he has been for 5 winters! He is laughing, proactively doing things, and is interested in things.
The rhodiola experiment is being run at the same time as the cinnamon x 2 tsp per day and ambroxol 60mg x 2 per day.
Also currently Hardys daily essential nutrients with added vitamers, Red light helmet, apolloneuro stress device, bright light therapy, fish oil, ubiquinol, krill oil , hemp seed oil, pantethine, biotin, citrus bioflavonoids, vitamin c liposomal, lithium orotate low dose, glutathione, citicoline, uridine, inositol, b2, b3, melatonin, mucuna,mannitol, and restore gold. Digestive enzymes. Bottled water with high Silica.
A few months ago he got off the last minute trace of the sertraline and mirtazapine which has taken a couple of years tapering very slowly.
He is taking 3 x 62.5 madopar and 1/4 Kemadrin x 2 per day. These are the only pharmaceuticals he is on now.
Main problem now is his shoulder stiffness and lack of dexterity in his right hand and arms not swinging.
He almost never complains of feeling fluey any more.
Face is smiling again
PD odour fixed
Urine frequency fixed
No constipation
Greatly improved anxiety but a little tremor eg watching exciting sport
Rosacea, acne gone
Energy levels much improved
Sleeping easily, no day sleeps now.
Ps for anxiety he now uses gaba gummies on the rare occasion he needs it. He has previously had clonazapam and was using 1/4 if needed but has been able to do without that for a few months now.
Please note if you intend to take rhodiola rosea it may interact and exacerbate side effects of antidepressants so talk to doctor first.
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LAJ12345
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Rhodiola Rosea looks like a good neuroprotective agent, and another good complement to leverage Ambroxol therapy, thanks! plan to try it ... very impressive list of supplements, you are doing extremely well for him, well done!
I have added the new things after looking at Ari Whittens supplement energenesis. It is too expensive to ship here and hubby is taking most of the ingredients already so I just added a couple more that were in it.
He goes through each ingredient and justifies it and rhodiola looked promising
Hi this winter the new things have been Red hat, 4 months ago
Apollo 7 months ago
So before winter started
Hardys daily essential nutrients new one with extra vitamers for people with mthfr defect 2 months ago
In the last month
Ambroxol
Cinnamon
Rhodiola
Fish oil changed to one with higher EPA: DHA ratio 1290/300
Bioflavonoids
Vitamin c
Krill oil
Hemp seed oil
Antidepressants all removed finally (slowly over years)
Improvements have been gradual since last November with no sudden change noticeable but thought I would mention it as winter he always crashes mid May, like clockwork.
He also did a course of 3 months toxaprevent for the mycotoxins he had early in the year,
We have an air purifier in his bedroom for about a year now
We have not had a fire this year and instead have used an electric heater as I was worried about air purity due to his high mycotoxin results (and my even higher ones!)
A while back you had discussed at length how your husband had had significant improvements in his condition after starting on the Hardy's supplements, but months later followed by a worsening of symptoms which you did not understand the reason for. Did you ever figure out what was the cause of that worsened state? If so, what did you incorporate to get him out of that state?
He currently sounds like he is doing very well, but you mentioned about 25 things that he is using to get to his current improved state. Is there any possibility that you could narrow that list to the things that you have observed to be the most effective of the bunch? Thank you!
Hardys did make a very big improvement initially. He deteriorated when he started on the sinemet generic Kinson. The nurse convinced him to take it as she said it would improve his stiffness. It made the stiffness worse and brought in unmanageable anxiety again much the same as the sertraline did when he started on that.
As I have changed quite a few things due to desperation because he became suicidal with the anxiety it is impossible to know which worked but I suspect a combination.
I know he has a defect in the gene that processes dopamine and seratonin so believe medications with these in them are a problem for him.
He also has a defect in the mthfr so b vitamins are a problem, and he also can’t process vitamin d well.
So my strategy has been removing as many toxins as possible (some of these have been over 3 years ie diet)
Gut- berberine and allimed 3 years ago has sorted out gut bacteria. Proof odour and rosacea improved
Toxaprevent to get rid of any other toxins especially mycotoxins
Air filter to get rid of mould and any smoke particulates from fires over winter
Foods remove all additives, gluten and sugar
Get rid of antidepressant medications which cause agitation.
Feed adequate nutrients
Hardys. The new one I think has made a difference again. It is specially formulated with vitamins in a form especially for people with mthfr variant.
Food vegetables , less meat and eat mainly grass fed NZ lamb. I have a feeling chicken and pork especially make him feel worse. (Maybe there is a reason pork is banned in some religions?)
Extra vitamins recommended by his genetic report
B5 for fatty metabolism
B3
B2
All highly necessary based on his report.
Lithium orotate
Inositol for anxiety - on and off
Oils hemp, high EPA fish oil, krill has astaxathin and high EPA to balance the ratio of fatty acids .
Thiamine
Vitamin c
Digestion aids to make sure any food is digesting to release optimum nutrition:
Enzymes
Mannitol to support gut bacteria(?)
Fermented foods yoghurt, kimchi, sauerkraut.
Brain boosting
Flavonoids, rhodiola in Ari Whittens supplements ultrabrain and energenesis. His supplements have many other things hubby is already taking so thought I would try.
Restore gold and Hardys have many of the same ingredients as his supplements.
Citicoline, mucuna , cinnamon, uridine,
Horny goat weed seemed to work very well for a while for apathy but I was worried it might interact with levodopa so stopped it. Plus it was needed on empty stomach and he was running out of empty stomach opportunities.
Light wavelengths
Bright light in the morning for melatonin / seratonin cycle
Red light therapy I think this may be key
Other wavelengths
Apolloneuro for heart rate variability improvement has I believe gradually improved his anxiety
Pharmaceutical
Ambroxol thins mucus to aid glymphatic system drainage to get rid of brain waste
Kemadrin small amount to offset side effects of levodopa
Madopar top up levodopa
Sleep: allows brain to clean out waste
Melatonin
Exercise :
Walking 1 hour most days with the dog.
Would like him to do more stretching and strength work . Apathy has been a problem caused by not feeling well, lack of energy and mirtazapine I believe. Apathy is slowly improving (proof he is arranging and buying things, suggesting outings, libido) so I hope to be able to get him to start working on shoulder mobility which might help his hands. I still have the other device that has TENS and attachment gloves to stimulate circulation in hands but he was too agitated and apathetic previously to be able to cope with it.
Social:
I have encouraged him to go to the bridge club as much as possible for interaction with people.
Part 2I think different people will find different things will help depending on where their problem is. They can identify that by looking at which symptoms are the worst for them and if they have a genetic report it helps to back up reasoning why something is happening for them.
That is a lot to take in and all I can say is that I hope he knows how lucky he is to have you!!! You are amazing and truly dedicated to his health. Judging by that list and what you have said in previous posts, you will go to whatever lengths are necessary to improve his health!!! You are A-M-A-Z-I-N-G!!!!!
Oh gosh that praise will go to my head🤣I am naturally interested in this field and nutrition and I guess it was a bit of a wake up call for me too when he was diagnosed so part of it is self interest wanting to know how to prevent the same happening to me or the kids.
And a slow dawning on me at how messed up this world is with the way people eat so much un-food. And how normal diet isn’t really normal at all
Ok, I asked him what he thinks helped the most bearing in mind I don’t tell him when he starts new things to avoid placebo effects and he thinks it was getting off the antidepressants. However that may just be a coincidence. He actually didn’t know when I took him off them initially as I kept giving him a sugar capsule for 6 weeks after the last dose so he wasn’t influenced by thinking he had suddenly stopped them.
Yup DIY single blind placebo trial with n=1. Not sure it passes strict statistical tests but it’s all I got🤣. Plus all you good people doing your own trials.
I’m extremely impressed with the regimen you’ve put together. My question is does he take all 12 Restore Gold capsules or a reduced amount? Given the sheer number of supplements taken it can be hard as you well know to ingest so many capsules.
Yes he takes the full number and 12 Hardys as well. But each one has many different components so it is easier than taking all the individual components. Remember that food has millions of different components (well it should do if you are on a healthy diet) and you eat kg of that!
Wow.... I thought I took a lot of Supplements- But I must say this is really great to see a focus on alternative medicine/therapy - I'm sure you have done your research . It is true that there is evidence they can help the body and mind.. and if we nourish the system with natural evidence based compounds along with medication, lots of exercise, sleep, pure water/air etc.... I believe we can benefit from them.. I've been taking Rhodiola for years and it's always helped against anxiety. I especially take this now along with L-Theanine on an empty stomach first thing in the morning.
I also take Lion's Mane , Resveratrol, Krill, Omega 3, MCT Oil, Magnesium, Kotu Kola, B2, Gingko, B12. I drink Wheatgrass daily from an organic farm. I also cut out most carbs now and have lots of veggies and fruit, chicken and fish- all Organic-
I strongly feel these have improved my memory, taken away anxiety, relieved brain fog to name a few.
On top of this I exercise by either cycling or power walking and weight lifting. I've had pd for 5 years now and the main issues are a shaky left hand , urge to urinate, and can feel sleepy-bit weak in the legs... but this comes and goes...
The only thing I worry about is can all these supplements cause negative interactions with each other?? but so far I'm continuing to experiment!
Each time he starts a new one I look it up to check what side effects might be and interactions with pharmaceuticals. I had been holding off on the rhodiola for a while as he hadn’t quite got off the antidepressants and there could be interactions but now he is off those 100% there are a couple of things I had been avoiding which may be ok now.
Many of those things are with from food plants or are essential nutrients so less likely to cause problems but “unnatural” molecules or herbal remedies that aren’t food I am always more cautious with. Remember how many different compounds there are in food!
In my opinion pharmaceuticals are way more likely to cause reactions, at least they have with my husband. They are often foreign molecules to the body and his body often rejects them. Even things that originally derived from plants are tweaked by changing parts of the molecules to make them in some time 1000s of times more active. (I used to work in a chemistry lab as a technician and my job was modifying plant compounds to find more bio active compounds that might be useful for treating cancer or other diseases).
Need to urinate- hubby found it was the thiamine was causing that and I have adjusted so that urge has now gone. His dose is now alternating days of 500mg, 500mg x2 as I am sick of splitting capsules!
Ps I have some lions mane but I bought it as a bulk supplement so I’m not sure how to take it. And he has so many other capsules as you say. How do you take it?
This is a great post I'm glad your husband is doing better. I would like to help my mom with her anxiety but how did you get the urinary situation fixed?
Any information you have please provide thank you.
For us the urinary problem appears to be related to the dose of thiamine he was taking . When it is is starting to be more than he needs he needs to pee often. Then when he reduces it ,it comes right. The dose of thiamine started around 3g per day but he now finds 500 alternating with 2x500 per day (average 750mg ) seems just right for him . It seems his requirement for it seems to be slowly reducing over about 2 1/2 years.
What is your mum taking? Supplements and medications?
She's going a lot because of the water intake. No UTI. Complains because we push her to drink more water. I think that her bladder reacts a little bit more than it should and she feels like she needs to go more.
Mmm, I’m not sure. My husbands seemed to be caused by the vitamins being flushed out. How much is she drinking of water and other drinks per day? Is she elderly? I think as you get older your bladder control just gets weaker so she might be scared of having an accident so preemptively going just in case. if it’s that pelvic floor exercise might help but not sure she will agree to that.Have you looked up side effects of any medications she is on? One of them might be doing it.
She is 74. She drinks around 48 to 52 oz on a good day. I don't think there's any side effects of the drugs but who knows.It's only taking C/L, Versicare and Gabapentin.
I think it might be the gabapentin see below. (But you can’t suddenly stop it). The Vesicare seems to be to treat the urinary frequency. Was the Vasicare given after the gabapentin? Is the gabapentin new? Is it for Parkinson’s or something else? Does she have any swelling in her legs?
Frequency not reported: Breast hypertrophy, gynecomastia, sexual dysfunction (including changes in libido, ejaculation disorders, and anorgasmia)[Ref]”
Gabapentin is not new . Needed for Neuropathy. Versicare came into the picture around the same time C/L was started. I am going to read the rest of your post.
Not taking B12 outside of the methylated multivitamin. I believe the blood test given or the type that most people get. She has not gotten a special test for folate B12 that I think a few places have.
She was having urinary problems before she started taking C/L. Parkinsonism dx was about 15 years but she never really followed through with taking medications on a regular basis until a year ago.
One thing that's pretty shocking is that she used to get pain in her hands and we could not figure out what caused it. This was about 3 to 5 years ago.
It was advised to give her the Gabapentin in relating to the dystonia but the issues with is with her cramped toes.
Gabapentin is not helping with her cramped toes. But it seems like when we take her off the Gabapentin, she becomes more sensitive to pain in her feet and her hands so I'm not sure what to do.
Started the Botox treatment in June 2021 and the results are not whslat my mom expected. (Cramped toes)
Has her second appointment in late August.
Supposedly for each treatment it can get better.
She's not diabetic and does not have high blood sugar.
I’m not trained in anything medical and can only make suggestions based on what I’ve found helps my husband and what I have read.
It sounds like she has circulation problems? Does she do much exercise? My husband has problems with dexterity in his right hand so I bought this with a glove attachment to help circulation but unfortunately he found it too stressful to get the glove on as even the large size was quite small so he won’t use it. He did enjoy it under his feet. It might help. You have to buy the glove separately. If her hands are smaller they might fit her better.
It sounds like she should be getting enough b12 if it’s in the supplement. Does it have the adenosyl and methyl cobalamin in it? Apparently different people need different forms. If you can get a b12 test it would at least rule that out. I’m surprised with neuropathy her doctor didn’t get one.
The supplements she is taking seem to be useful. I know I keep going on about Hardys daily essential nutrients in various posts but my husband found they really made him feel much better. He gets the ones with extra vitamers now. They have some of the things she takes already so it would replace those if you wanted to try them. I find it handy to have them all in one product. It has other vitamins and minerals and trace elements too. Maybe she is deficient in something else so you could try these at a low dose and slowly increase. The clinical dose is 12 per day but 4 per day as a general multivitamin. It has both the b12 forms in it.
I had my husband on the individual vitamins before he started on Hardys but he didn’t find they helped the same.
PS I have found that the drugs the doctors have given him have made him feel worse eg antidepressants and even c/l so not everything suits everyone. If something doesn’t seem to help and causes side effects I tend to slowly get him off it. He doesn’t seem to be able to be helped with things that help other people.
Does the Hardys have Vitamin A in it? I wanted to encourage you in your role of caregiver. It is just as Art said above, you are doing an amazing job!!!! God bless you!
Hi there!! how did you get on with the rhodiola?? di your husband stay on it long term? I've read cycling on and off might be best. I've been thinking about suggesting it for my dad although I'm a bit nervous to do so.... I actually used it before when stressed and found it really effective for that.
I didn’t in the end give it to him. He took Ultrabrain from energyblueprint for a while and that had it in it. That was very expensive and didn’t seem to make a difference so he stopped again.
I think I was a bit worried about interactions . Actually k can’t remember why I didn’t give it to him in the end.
I have been giving it to my 20 years old son along with Hardys daily essential nutrients. He had dropped out of school, was lethargic and depressed and couldn’t focus on school work.
He had been taking the Hardys and cycling the rhodiola and is like an energy bunny now. He has just passed a year of uni getting mostly A grades when previously he couldn’t seem to finish anything. So it definitely works together with Hardys for energy for someone with adhd symptoms
Actually I think I decided for hubby it might make him over agitated as he is very sensitive to anything that affects dopamine or seratonin.
thankyou for the reply! glad your son Is getting getting on ok with it. It sounds like such a potentially helpful herb Im find it hard to understand why its not discussed and considered more. It's been picked up by some health and fitness youtubers/ Drs lately , most notably Andrew Huberman who says he takes it before tough workouts for recovery. So maybe it will start to get a bit more investigation. Interestingly It contains tyrosol (among other things) thats in olive oil which might have so neuroprotective qualities.
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