This topic contains 46 replies, has 8 voices, and was last updated by  Jean Mellano 2 weeks ago.

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  • #11599
     Jean Mellano 
    Keymaster

    There is so much information online about different vitamin supplements and how they may help PD.  I take Vitamin D, B-complex, Ubiquinol, Magnesium.

    Are you taking any vitamins?   Do you feel they help your symptoms?

  • #15807
     Andrew L. 
    Participant

    Lion’s Mane mushroom supplement looks interesting. Claim is that it stimulate neurogenesis. Obviously a very long shot, no FDA approval etc. but seems pertinent if claims are even remotely true. Supposedly no side effects, can’t personally vouch for safety or efficacy and this is not a recommendation though I am taking it myself.

    https://koplayers.info/show/OUUwUjE4dFJWN2c.html

    • #15813
       Jean Mellano 
      Keymaster

      andrew

      i have seen that video before but never followed up on it… I am getting burned out by all these options. Thank you for sharing.  if you do try it, please let us knows your results.

  • #15814
     Andrew L. 
    Participant

    Hi Jean: Have been on it for about a month. Without concrete scientific testing , there is really no objective way to know if it is helping me or not. Am throwing the kitchen sink at PD so no way to know what helps and what doesn’t .

    • #15815
       Jean Mellano 
      Keymaster

      I struggle with the same dilemma.  I have also tried throwing everything at pd .   It takes so long to see if something is effective or not, then u have to worry about interactions between drugs and supplements. Then u worry if your disease is progressing.   What a mess.

  • #15823
     Andrew L. 
    Participant

    A mess indeed. We just need the strength to stay positive one day and sometimes one moment at a time. After thinking about it , there really is no other choice.

    • #15829
       Jean Mellano 
      Keymaster

      Andrew, agreed ; one moment at a time and positivity is what we need to focus on.

  • #15824
     George Kapetanakis 
    Participant

    Hang in there, guys. There is so much more hope now than even three or four years ago.

    • #15827
       Jean Mellano 
      Keymaster

      George.

      From your lips to God’s ears…

  • #15828
     Andrew L. 
    Participant

    Seconded!

  • #15834
     Michael R. Scott 
    Participant

    Found an article on Goggle several days ago about a fellow who had been taking 2Gms of B-1 (Thiamin) in morning and 2 Gms B-1 in evening for about five years. Claims his tremors and other symptoms of Parkinson’s (14years) are now gone. Claims his Italian Doctor made a presentation at Mayo Clinic in April to fund a double blind test. Anybody else heard of this approach?

    • #15835
       Jean Mellano 
      Keymaster

      yes, i believe it was dr. Constantini(?)  i did try taking the b1, but they were horse pills and i couldnt swallow them.   so many treatments with supplements, work for some, but not others.  i am all for alternative therapies, i hate taking drugs, but a neuro said to me when you start overloading on some of these unproven supplements, you could be upsetting  a balance in your system as well as possible impacting the efficacy of any meds you may be taking. I also believe it is not in big pharma’s best interest if there was a “natural”  cure, symptom relief..

  • #15842
     Michael R. Scott 
    Participant

    I understand your fatigue. Now, after 5 years I find that the heat affects me more when I am working outside in the Summer… 🙁 I think walking or biking is the best along with Core exercises. I now find weight training the hardest. 🙁

    I’ve spent my life overcoming obstacles from poverty, military, college, etc. Therefore, staying positive with PD has been not been so hard. My gut is that we will find a cure within 5-10 years or sooner..

    • #15843
       Jean Mellano 
      Keymaster

      Michael, any temperature extremes or sudden drops in barometric pressure adversely impact my symptoms.

       

      Interesting, I find it easier to get through my weight workouts vs. cardio.  Even though I am still doing about the same weights I have done prior to pd, I do feel as though I am getting weaker.  Go figure

      • #15867
         Andrew L. 
        Participant

        “I’ve spent my life overcoming obstacles from poverty, military, college, etc. Therefore, staying positive with PD has been not been so hard. ”

         

        Thank you for that Michael, it resonated with me. Told people at boxing today about it!

  • #15844
     Andrew L. 
    Participant

    I am guessing I had PD at least 2 years before actual diagnosis (maybe longer). I had all but given up on lifting weights as I was literally crippled after lifting 30% of what I did when younger. Pain and stiffness after made it unbearable. When I started the carb/levo I found that I could lift weights again, as long as I stretch afterward. Obviously not where I was in my youth, but significantly better with this now. Jean, I am wondering if you have discussed selegiline with your neuro? My neuro calls it an “enervating” drug , and I believe it counteracts fatigue…but that just may be my body, I don’t know….

    • This reply was modified 3 weeks, 5 days ago by  Andrew L..
    • #15850
       Jean Mellano 
      Keymaster

      andrew,

      thanks for sharing your experiences.  selegiline is on  my list. I still trying to find the right ‘cocktail’ of treatments to alleviate my symptoms.  i went for a sleep study this week to rule out apnea or an REM disoder.

  • #15857
     Michael R. Scott 
    Participant

    Andrew, how old are you?

  • #15837
     Michael R. Scott 
    Participant

    Yes, that is the one…. 🙂 As there are no warnings in this area of dosage, I got some 500mg Thaimine HCL capsules (4 capsules, no probem swallowing with water). Have taken this dosage 8AM and 5PM for two weeks now. Suprisingly, my constipation problem since PD has stopped happening. Also the tremors have reduced along with time time I need to take my Levadopa/Carbidopa (25/100)…. From 4 hours to 5 hours. Might be psychosomatic (sp?) but time will tell…. A good site for my other Supplements as been Vitamin Because.com. They also had the best price for the 500 mg B-1 (Thiamine HCL) at 200 caps per bottle.

    For the record, I am a 74 y/o male. With a history of Concussions and Chemical Exposures. 10 years US Army Special Forces (Thank God, no Agent Orange, that I know  of…..), 29 years Paramedic/Firefighter Captain and 26 years Ski Patrol….. Also have maintained a three times a week gym routine of 15 min. Core, 30 min. Weight Training and 15 min Cardiovascular for over 58 years….

    • #15839
       Jean Mellano 
      Keymaster

      michael, thank you for sharing your experiences.  I bet your exercise  routine is key to what you are doing to stave off progression and getting symptom relief.  One of these days I am going to find something to help me with my symptoms.  i still exercise, but my fatigue is so debilitating, i is difficult for me to get any solid workouts in 🙁

    • #15866
       Andrew L. 
      Participant

      I am 62

  • #15925
     Philippe Joly 
    Participant

    Besides vitamins as such I use for taking care        of my intestine :

    – L glutamine  ( widely mentionned for leaky gut)

    – digestives enzymes (if you feel heavy after meals)

    – probiotics (still a rather new field but this can help restoring your microbiome)

    I also take curcuma, q10 and omega3 from time to time.

    For vitamines I would like to point out vitamin B3, which is the natural precursor to melatonine and occasionnally helps me sleep without all the issues linked with sleep drugs. And there have ben a couple of publications as to its positive role on parkinson’s.

    All of the above help me feel more dynamic and clear headed within a few days of beginning to take them.  But it is hard to claim anything beyond that with any degree of certainty. And after a while it gets tedious to absorb so many pills!

  • #15927
     Michael R. Scott 
    Participant

    Jean,
    Did you get the piece I wrote to Andrew about Bio-Identical Testosterone replacement?
    Mike

    • #15928
       Andrew L. 
      Participant

      Hi Mike: I never saw the piece.  Can you resent or post here?

      Thanks, Andrew

    • #15931
       Jean Mellano 
      Keymaster

      Michael, not sure what u r talking about.

      • #15945
         Michael R. Scott 
        Participant

        Lou,

        I’m at a loss as to how that piece got lost… 🙁 What I was recommending to you, was that you look into Bio-Identical Testosterone Replacement. Here is a shorter version. At about 18 our tesosterone readings are around 750 and from there it is down hill. I found about 65 (nine years ago) that I was “pulling and straining” muscles while using the same  weights and exercises that I had been using since getting strong enough to get into Special Forces.  One top of that I looked smaller, so I went back to my old measuremments from about 18 and found that I was indeed smaller. A study fiund out about falling testoserone levels and lost muscle mass. I found a source through the Urology Dept of  our University Medical Center. At 65, my levels where 60. Over the next year they ordered bio-identical testoserone cream which I apply every morning after my shower. Slowly my levels returned to about 650 and with those readings,  my muscle mass and strength returned. Should you consider it, I would highly recommend a university hospital setting where they treat many men with bio-identicals. You also have to have a healthy prostate. They tested me about every two months, then every six months once my current levels where reached. I also sleeep better and my skin is stronger and softer also. Questions? Ask away!… 🙂

        Mike

      • #15954
         Jean Mellano 
        Keymaster

        thank you michael for reposting.  i dont recall seeing it before…must be in the black hole called the internet LOL

      • #15987
         Andrew L. 
        Participant

        Mike: Thanks for sharing thoughts on T replacement. Interesting , they used to think it was a no go for men with high risk of prostate cancer, newest studies (in last 2 years) now show no increased risk. Will see what my uro thinks. Since have family history of pr cancer, never got t levels checked, now will do it, tho think that is not an issue for me (but sleep certainly is)  .

  • #15856
     Russ Hudson 
    Participant

    I take butyric acid supplements. They have cured my Parkinson’s. Here’s a link with more information.

    The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s Disease

    • #15864
       Jean Mellano 
      Keymaster

      Russ, I will approve this post since it seems the link you provided is not selling anything.   I am glad you have found some success taking this supplement and thank you for sharing.

  • #15936
     Philippe Joly 
    Participant

    On top of butyric acid, the above interesting article posted by Russ refers frequently also to the role of niacin- this is in fact Vitamin B3. The article considers that niacin is depleted when you have PD, resulting in inflammation, and one of the benefits of butyric acid would be to compensate for that lack of B3.

    So perhaps another pill to take. Regarding swallowing problems, Jean, I was told by the hospital staff to use a straw, and it did help a lot when I had trouble to swallow. Perhaps you are already well aware of that little trick. Now, I don’t really need it anymore at this stage, since I had DBS surgery one year ago.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    • #15942
       Jean Mellano 
      Keymaster

      thank you Philppe.  i have used a straw for my smoothies. I will try it with water when i take my pills..

  • #15990
     Michael R. Scott 
    Participant

    Andrew,

    Have you tried Melatonin for sleep and if so at what dose?

    At bedtime I take a timed release Libo/Carbo CR 50/200. That lets me sleep about 7 hours.

    Mike

    • #15991
       Andrew L. 
      Participant

      Hi Mike: Timed release C/L seems like a good idea for the night.  Have been taking a 2 am dose every nite (wake up spontaneously) My neuro didn’t like it for some reason, will ask him again. Have yet to try melatonin. Took it years ago and it worked for a few months and then was like a placebo. Am open to trying again…good questions for me to ask at next doc visit. Thanks.

  • #15951
     Michael R. Scott 
    Participant

    Andrew,
    Sorry I called you Lou..😣 I was in a rush this AM. Sorry also for the spelling errors.. Rule #1 is don’t write anything unless you have the time to proof it.., r

    • #15955
       Jean Mellano 
      Keymaster

      michael  have been called worse LOL

    • #16003
       Andrew L. 
      Participant

      No worries Mike.  Am sure have done the same thing, prob in my last post.  More important to get your point/info across imo. Glad we are networking 🙂

    • #16013
       Michael R. Scott 
      Participant

      Andrew,

      I used to sleep like a baby, until Parkinson’s. Once I began to have tremor beakouts during the night, I found that I could not get back to sleep for hours….. That is when my doctor ordered the 50/200 C/L, CR timed release (Sinamet) at bedtime. She also had me begin taking one Melatonin 300mcg tablet just before I went to bed. In the past I had taken a larger dose, but she said that the 300mcg would work better and it has.

      Now I am getting roughly a 7-8 hour sleep, which is much closer to the sleep time I have needed most of my life…. Also, she instructed me to turn off the TV before bed. If I wasn’t ready to sleep, she recommended that I bring a book to bed and that has done the trick as I’m off to sleep within 5-10 minutes!… 🙂

      Mike

      • #16014
         Andrew L. 
        Participant

        That is super helpful Mike, thanks

      • #16015
         Andrew L. 
        Participant

        Mike: I had been taking 1/2 tab  carb/levo 25/125 at bedtime (around 1130) and 1/2 at a 2 am (when I wake up like clockwork) + 10 mg CBD sublingual. Problem is 2am dose, don’t go back to sleep for hours, though CBD does relax me. Think I am going to try upping the bedtime dose to 1 tab  and will add in some melatonin (3mcg sounds good). Will keep the 2am does (if needed) at 1/2 tab. If that doesn’t work will contact doc about time release tabs, which would be the equivalent of 2 tabs at night. My big concern here is how much sinemet is too much, raising the risk of dyskinesia?  Taking the time released dose at night is essentially taking 2 tabs. How much do you take during the day? Has your doc given you a guideline about how much is too much?  Thanks, Andrew

  • #15956
     Nadine Eidman 
    Participant

    Hello everyone. I/we are new to all of this. My husband (66) was diagnosed with early stage PD 2 months ago. Have been meeting with neurologists, naturopath, reading and researching. A couple of supplements that seem to come up a lot are: probiotics, calcium, magnesium, D3, K2, DHEA, A, B complex and GLUTATHIONE (pill form). Certainly, quality products are vital. The last one appears in recent literature. https://www.michaeljfox.org/news/ask-md-glutathione-and-parkinsons To my knowledge, none of these have any negative side effects. Has anyone tried these, especially the glutathione or is on a trial? Thank you so much.

    • #15962
       Jean Mellano 
      Keymaster

      hi nadine, thnks for your post.  pd is such a complicated disease, we all have different symptoms and all react differently to various treatments (vitamins, supplements, meds, etc)  i think you are on the right track.  most of the things u mentioned, dr. mischley (naturopathic dr. well versed in pd) is a proponent of.  i went to her week long seminar in august and i summarized it here:  https://parkinsonsnewstoday.com/2019/09/03/top-six-parkinsons-summer-school/

      i do believe we have to be careful on what brands/dosages we choose.  as an example, too much b6 can interfere with c/l absorption.  https://www.ncbi.nlm.nih.gov/pubmed/29311446

       

  • #16017
     Michael R. Scott 
    Participant

    Andrew,
    That’s 300 mcg pill of Melatonin at bedtime. The timed release lasts about 8 hours. It seems to be a harder compacted pill that dissolves more slowly, therefore keeping you tremor free longer. Sometimes if I miss my 50/250 time, I will also take a 25/125 as it dissolves more quickly and stops the tremors more quickly.
    Mike

  • #16034
     Deborah 
    Participant

    For several years I have been taking the supplement Niagen, which is nicotinamide riboside, a substance purported to aid in the work and health of our mitochondria, cleaning out old and harmful substances. It’s supposed to increase our energy. My  son-in-law is convinced it helps him, but who knows? I have never felt a definite surge but I am thankful  for the slow progression of my PD and continue to take two tabs daily proactively. Has anyone heard of it or used it?

  • #16043
     Jean Mellano 
    Keymaster

    hi deborah, I have not heard of this.  you may want to start a separate post on this topic to see if anyone responds.  i am glad it seems to be working for you…

  • #15935
     John H Lambert 
    Participant

    Yes… I do take supplements with my meds. Here they are, dosage and reasoning…

    1) Vitamin Super B-Complex 350Mg 4 times a day. Made up of B1,B2,B6,B12

    B1 or Thiamine  is an excellent neuro-protector. This is well documented at PubMed

    B2 or Riboflavin helps the Serotonin another brain chemical that helps with the amount of rest the

    Parkinson’s patient gets, also helps lower extremity swelling (which most of the drugs for the Parkinson’s

              patient do)

    B6 or Pyridoxine is required for neuro-regeneration (putting back some of what we’re missing) plus growing

    nerve tissues

    B12 or Cobalamin helps to sustain red blood cells, and aids developing nerve tissues

    2) Rotate on and off Nature Made Magnesium 250 Mg 4 times a day for constipation (I do get tired of hearing my

    stomach rumble)

    3) Potassium Nature Made 100Mg 3 times daily/ most inexpensive blood pressure meds that contain HTCZ leach the

    Potassium from our bones, eventually causing muscle cramps. Potassium tablets are a good remedy for this. If the

    body needs Potassium it’ll warn us. I remember this from my PCP, “if you feel your muscles cramping due to the B/P

    meds, the lack of Potassium has already affected the heart.

    4) Vitamin D3 Nature Made 5000 IU’s daily.

    5) Mucuna Pruriens / Zandopa 1 tablespoon (1 Tbsp measuring scoop provided with product) full in a 20 Oz shake container of Chocolate Silk daily. Good source of powered L-Dopa. This brand I get from Amazon @ 200 grams per container, 2 containers every month. There’s 15.64 tablespoons in each container. Two containers will cover about a month. Starting at about 7AM I’ll make a container then sip on that all day long, returning it periodically to the fridge. Remember Silk isn’t milk, so you can use this to take your other meds with. I do this because as the Parkinson’s advances I need slightly thicker drinks to consume at meal times. At meal time I’ll drink the Almond Silk which is very tasty. Sense the Zandopa contains a small amount Stevia and therefore has a sweetness to it, the Chocolate Silk makes an excellent quick breakfast item for me.

     

    • #15943
       Jean Mellano 
      Keymaster

      john

      thank you for all this useful info. most of what you say is what Dr. Laurie Mischley recommends… to add to it..

      1.  Kiwi fruit and salt substitutes are also good options for potassium

      2.  As I understand it, too much b6 is not good..as it may affect the efficacy of levodopa medication. https://www.ncbi.nlm.nih.gov/pubmed/29311446

       

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