Is my neurologist right?

[Vt11]

I saw a neurologist yesterday for the first time since being diagnosed with PD five years ago. My symptoms started five years prior to that, so I am in my 10th year. I am 71 years old.

I have not taken any conventional PD drugs as of yet. Been managing symptoms primarily through exercise, diet and supplements. I don’t have any significant shaking/tremoring. My main symptoms are balance issues, drooling, stiffness, and slowness of movement. I have tried many different approaches to healing, including red light therapy, high dose B1, heavy metals detoxification, many dietary changes, treatment for Lyme disease, numerous attempts at using mucuna (which never did anything for me ), daily exercise, and more. Despite all of this, the PD continues to accelerate in intensity.

I saw the neurologist primarily to talk about starting levodopa. Some of what he said was in contrast to some of what I have heard online through this group. Here are the significant points. Please comment as you see fit. I greatly respect the feedback from this group.

He said:

I should start taking Sinemet 25/100, gradually building up to three tablets per day after 15 days. The only side effect I might experience would be nausea.

I can try this for 2-3 weeks, then stop if I feel to, then restart the levodopa at any time.

This treatment should not be expected to have any positive impact on my balance issues or drooling.

Since I have not been taking drugs as of yet, my daily experience of PD should be reflective of what I would experience during the off period when I start taking levodopa. In other words, my off period will feel no worse than what I am feeling now.

Does all of this sound about right? Thanks for your feedback.

[docjleonard55]

Every person with PD responds in their own unique way to supplements, exercise, diet etc. Same with meds. Your non response with mucuna might indicate that you will not respond to c/l. However, it is worth a try, and if you don't respond, then stop. I stopped my c/l for six months, and wound up in crisis (whole body tremors, anxiety, fell out of bed twice in a week[RBD], and general feeling of blah. Got back on and felt better. Progression is going to happen no matter what. Just keep doing what you've been doing. Sounds reasonable.

[Vt11 in reply to docjleonard55]

Thanks for the feedback.

[Esperanto]

Overall, it seems your neurologist's advice aligns with common practices in managing PD. The proposed dosage is a good start, although the advice from your first neurologist five years ago seems wiser, suggesting three halves of 25/100. If that proves to be insufficient, you can always consider adding a quarter. Fine-tuning with 25/100 dosages can be difficult. You can always stop or reduce the dosage, as you have managed without C/L until now.

[Vt11 in reply to Esperanto]

Thank you

[Cagey84]

Go for it- 3 x 25/100 is still a very low dose

[Psalmody]

sounds about right U have done well to go 10yrs no meds.

I’d give mucuna another try.

There r various brands and strengths. I started on dosage u have been recommended but after a couple of years I changed to mucuna 350mg & half 25/100 c/l.

This has worked much better for me. I find the mucana kicks in much quicker & off time is not as long.

[Vt11 in reply to Psalmody]

What brand of mucuna do you use?

[Vynnla in reply to Vt11]

NatureBell 1500mg (with ashwagandga). I heat up 1/2c of water or apple cider, add 1/16 tsp matcha green tea extract (a powder), empty the contents of 1 mucuna capsule into that, and whisk it up. 1 capsule contains 30% l-d, or 150mg. Been doing this for years. Make sure you use a good quality matcha green tea powder. 1/16 tsp of my green tea extract is 125mg. Found this combo to be very effective, especially first thing in the morning.

[Sushibruno in reply to Psalmody]

Half 25/100 c/l per day? 350mgs mucuna once a day? Should the doctor be informed or no?

[MarionP]

Sounds nearly parallel to my own diagnostic history, experience and time frames, as well as age. I'd say very similar to a typical "prodromal" phase. They will of course be individual differences as time goes by. The recommendations also sound just fine, maybe initially starting your typical CL, or halvesies. Or wait further. Meanwhile perhaps trying different brands and doses of mucuna. I would watch the RBD as that can cause trouble and need to be managed separately as its own diagnosis with maybe micro doses of things they give for that. Other than that, but this is really just a matter of "keep on keeping on." The longer you can get this phase to continue, the better... Overall it's not a bad place to be.

[Vt11 in reply to MarionP]

What is RBD? Can you recommend a specific brand of Mucuna? Thanks for your comment.

[MarionP in reply to Vt11]

I don't use mucuna yet so I can't recommend anything, somebody else certainly can, many use it. RBD (sometimes RSBD) stands for "REM-sleep behavior disorder. " You can look it up, common enough in PD to have separate terms and treatments for it.

[LAJ12345]

try 1/2 that for a few weeks to see how you feel. If that seems enough to feel a bit better you don’t have to increase. Plenty of people on here can’t handle larger doses. My husband still takes the 50/12.5 after 6 years.

[Vt11 in reply to LAJ12345]

I will try this dosage to start. Thanks for the suggestion.

[Sushibruno in reply to LAJ12345]

How many times per day should half be taken? That’s great this has worked for your husband.

[LAJ12345 in reply to Sushibruno]

My husband finds he burns through the meds very fast so he overdose at about 1 hours then runs out at 2 1/2 hours if taken at a normal schedule rate.

His pills are only half strength (50/ 12.5) so he now takes 1 at 8,11,2,5,8 and an extra 1/2 (ie 1/4 dose) at around 6am when he wakes, then 9.30 and 3.30.

If he takes anything more at once he gets severe spasms and tightening around his throat which is scary.

The best thing for you to try is 1/2 tablets taken 3 hourly. See if you run out of oomph before next is due. Ie you slow down or become unable to move. You can then try to increase to 3/4 each dose and see if it’s better or worse. If worse try putting the extra 1/4 between the earlier doses in the day.

You might find you need less in the evening as each dose produces a tail (ie some stays in your system until it tapers off). and subsequent doses are on top of all the previous tails of the day, so by the end of the day you might have the tails of 3-5 doses on top of each other so another dose migh push the next dose peak over the top.

You'll know if this is the case if after about 60-90 minutes you start feeling agitated, muscles tighten, anxiety increases and you feel worse. If you don’t have enough in your system you might become very slow or unable to move.

For everyone it’s trial and error until you have found the right spacing of pills and the right strength of the dose. My husband uses the white madopar tablets not capsules as they are easy to break to any size. And because I don’t like him eating all that blue colouring.

[Vt11 in reply to LAJ12345]

Thanks

[Eryl]

Sad that he only has suggestions for managing the symptoms and no advice on how to slow or stop the progression of the disease which should be to avoid damaging oxidative foods from your diet and trying to avoid environmental toxins.

[drumhead]

Some people get nausea with it so probably best to take with food, especially at first and most recommend a low protein meal when taking C/L due to protein potentially making it less effective. I take 25/100 full pill in morning then a half mid day and a half after dinner. Also consider taking rasagiline aka Azilect for mild symptoms as it can help keep your C/L dose low and avoid potential dyskinesias later on.

[dsalucci]

My late husband was diagnosed with PD in his 70s and got really busy with boxing and other exercise, diet, supplements, etc. He made it to 91 without taking a single PD med, so, while he had to deal with the gradual progression (that would have happened anyway with the meds), he never got depression, dementia or any of the typical side effects. He did get physical therapy (with a speech therapist) for the difficulty with swallowing/drooling and it helped a lot. He began to "step down" a bit during the pandemic because he couldn't go to the gym and what he could do at home was not adequate. Yes, he became weaker and had more balance issues, but we got as much help as we could with setting up the house to help him. Eventually (and only in the last few months of life), he began to develop aspirational pneumonia, which was treated a couple times with IV antibiotics, but he was weakened by it. He eventually decided to bring in hospice care, which does still allow for oral antibiotics and other meds, but when the time came he chose not to treat the final pneumonia and was kept comfortable in hospice care and died peacefully with no regrets. He was alert with positive energy until the last few days and was so glad he did it "his way." Blessings on your journey.

[gginto]

3 tablets a day after 10 years of managing the condition is very minimal so I wouldn't be concerned much about side effects.. When I started taking Levodopa 5 years ago I started with 3 Half tabs per day and gradually build up to 3 tabs a day- I was SO concerned and worried about side effects because I never took drugs- even for a headache .. I felt if I started this thing with drugs I'd be riddled with side effects, injesting poison, and riddled with dyskinesia. For me this didn't ever happen- I did get bouts of sleepiness and feeling "spaced out".

I'm up to 2 tabs 3 times a day and still don't have too many side effects- no real dyskinesia other than a bit of bobbing while I eat breakfast.. I was never certain that the Levodopa even did much- however, when I get close to the wearing off time I start to tremor more and get anxious.. but I take supplements that seem to help with this such as L-Tyrosine and others.

I fast walk almost 10kms a day and take lots of supplements as well as acupuncture, reflexology and Shiatsu to name a few.. I also try to cut out most carbs and eliminated the "white death"- SUGAR- from my diet.. Basically I do a lot of natural medicine which seems to have worked through the years.. but I also have more shakes and stiffness nowadays. It always gets worse if I skip too many days of working out. Also, stay away from Stress.

With this condition I try and live moment to moment- continually reading up about what natural, evidence based approaches help with this condition. I'm trying to avoid more drugs as long as possible!

I would say definitely start with the Levodopa as I think it might help somewhat with your situation. You may find it deminishes your symptoms-

One of these days I'm going to try and decrease the Levodopa back to 3/tabs a day- but I'm going to have to increase my workouts and fine tune my regimen..

Good Luck!

[Vt11 in reply to gginto]

Thank you for your comment

[kaypeeoh in reply to Vt11]

I vaguely remember titrating the dose but thought I did that for other medications. I was officially diagnosed four years ago but had been on Sinemet for three years prior. So that's 7 years now with no change.

[Sushibruno in reply to gginto]

Can you please share the supplements you take? My husband takes b1, b2 , coq10, and IP6&inositol

[gginto in reply to Sushibruno]

Sure, here are some of them:

Lions Mane

Magnesium L-Threonate- magnesium for the brain

L-Tyrosine

Curcumin/Turmeric- helps with inflammation

Omega 3 fish oil- from small fish

Ginkgo Biloba

NAC

Taurine

Grape Seed Extract

Resveratrol

B Complex

B12

Probiotics

B1 Thiamine

Acai tabs, and juice

Magnesium Citrate-For constipation

I also take wheat grass from an organic farmer ..

Vigorous Exercise daily - Nothing beats it.

[Sushibruno in reply to gginto]

I appreciate it thanks

[bigl62]

Hi vt11I went down the same road trying any and everything before taking C.L.

I tried B1, red light, various diet, boxing, walking, HIIT, hyperbaric

dives, detox lead and I could go on.

CL only made me sick and sleepy. Tried it off and on for 3 years..no symptomatic improvements..

I got tested for H-pylori and got treated..then I tried CL again. I got 85% of my lifeback. Balance returned,getting out and in the car,

The list goes on. I can take CL and experience ON periods for 4hours.

[Vt11 in reply to bigl62]

Thanks for your comment

[beckenham in reply to Vt11]

Lots of people talking about C/L, but what is it?

[barrie1757]

I would encourage you to try mucuna again. You probably used one that didn’t have enough l-dopa. I use a 99% l-dopa mucuna pruriens powder and take with 500 mg soluble vitamin C to help it cross the BBB. I started with 1/16 teaspoon each dosage and worked up to 1/4 teaspoon over 2 weeks. I backed down to 3/16 teaspoon after adding vitamin C. I take this with a low protein snack to prevent nausea and mix in a glass of water. I usually take 3 x. a day. British Supplements has two types of 99% capsules that I have used successfully also. I am trying to avoid common side effects of dyskinesias caused by C/L with continued use. I also take supplements to support my detoxification pathways and support my nervous system and brain health.

[barrie1757]

Check out FB group Mucuna Pruriens Parkinson.

The Files has good info on dosing( Calculations pdf).

[SuuSuu]

Hi! I'm 66 and 11 years from diagnosis with a similar story: "I have not taken any conventional PD drugs as of yet. Been managing symptoms primarily through exercise, diet and supplements. I don’t have any significant shaking/tremoring. My main symptoms are balance issues, drooling, stiffness, and slowness of movement." Haven't seen too many like us on here (non-tremor, no drugs), I'd be interested in what you decide and the outcomes. Keep us updated please!

[posthinking01 in reply to SuuSuu]

Hi there well done on managing symptoms - same thing with my partner - just diagnosed - exactly the same symptoms but no tremor no drugs - balance was an issue and I did some research and gave him Vitamin D which amongst other things is implicated in balance issues. It has really helped - I buy Natures Best D3 - 1,000 ui's only -

then I gave him Magnesium L - threonate (very expense) but a new kid on the block to get through the blood brain barrier - only magnesium product to do that. I get mine from Cytoplan. -

then Vitamin B1 which is being implicated as being deficient in PD patients - and this has helped considerably.

then B12 1,000 ug - (Natures Best) which cannot become toxic as it is flushed out of the body naturally via the urine.

Then a B complex product - also from Natures Best then on the list I give him on occasions Vitamin B6 50 mg (Natures Best) he takes all these after breakfast but leaves the B1 and D until lunch time in case of overload. Hope this helps - not sure if you are on any medication at all for other medical issues - if you are then this would need to checked out if OK with your medication. Which I would be able to do for you if you give me the information.

Hope this helps.

-

[SuuSuu in reply to posthinking01]

I started B1 high dose and quit to add B complex and Magnesium and B12 for a baseline. Plan to restart in April... and I should be adding D.... Thanks for the info. (FYI - Not on any prescribed meds)