My Struggles Worsen Despite Natural Treatment Experimentation

My Struggles Worsen Despite Natural Treatment Experimentation

My body does not feel right. What am I going to do about it?

What has happened to me?

My quality of life was deteriorating due to my neurological issues. Along with poor fine motor skills on my left side and slowness of movement, I was constantly fatigued. This was a fatigue that no amount of quality sleep could ever satisfy. Additionally, I had internal tremors (not visible to the naked eye, but I always felt so weak and shaky). I thought for sure there must be some kind of “natural” solution to help cure what ailed me — one that did not involve prescription drugs.

My initial approach was to go to physical and occupational therapy and to continue my exercise regimen (weights, yoga, cycling, walking). This plan did not seem to slow disease progression or alleviate my symptoms. My depression and lack of motivation (other Parkinson’s disease symptoms) were also hindering me.

I can’t fight this alone, so drugs are an option

In March 2016, I finally agreed to try Azilect (rasagiline), a prescription medication. Two weeks later, my symptoms had not improved and I felt worse (dizzy and nauseous). So, off that medication and on to the next one, ropinirole. This time, it only took a few hours on the medication for me to become extremely sick with vomiting and a pounding headache. I immediately discontinued that medication.

Both my neurologist and primary care physician thought I should focus on treating my depression symptoms with a prescription medication. In August 2016, I tried Viibyrd (vilazodone HCI), an antidepressant. Within a few weeks, I was suffering from intense, gory nightmares every night with no improvement in my symptoms. At this point, I decided my PD symptoms may not be such a bad thing, and I refused to try any more medications.

I can’t fight this alone, but drugs are not an option

In October 2016, I attended a week-long workshop that focused on a plant-based diet. My diet needed a serious overhaul. The time was right to see if changing my eating habits would make a difference in the quality of my life. I was already a vegetarian, but I still loved my dairy products. I also loved sugar, pasta, and bread. These food items are known to potentially cause inflammatory responses in the body. Also, I have read that the neurodegeneration observed in PD is accompanied by inflammatory processes. If I added these two theories together, I believed a change to a gluten-free, no-sugar-added, vegan diet might help my PD symptoms.

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A holistic doctor at the plant-based diet workshop I attended suggested I look into the Hinz Protocol for treating my PD. Dr. Marty Hinz developed an amino acid therapy that utilized natural dopamine powder from the Mucuna pruriens (velvet bean) plant in conjunction with other amino acids. I found a neurologist in New York City who endorsed this approach. After I returned home from the workshop, I maintained the strict diet and struggled with the Hinz Protocol. I say “struggle” because I suffered a lot of nausea. The doctor had to repeatedly adjust the dosages for the amino acid capsules and Mucuna pruriens powder to attempt to eliminate nausea and get symptom relief. Also, the cost of this protocol was hundreds of dollars per month and was not covered by insurance. I could handle the cost if my stomach had relief and my PD symptoms improved. However, that was not to be. After six months, I discontinued the Hinz Protocol.

The losses and the adjustments

I was starting to get very good at making adjustments when a PD symptom would impair me in some way. As an example, I find it difficult to put my coat on with my left sleeve first, so now I put my coat on with my right sleeve first. Or, since I can no longer feel where to put in my pierced earrings, I just make sure I have a mirror handy to see what I am doing. While waiting on a cashier’s line to check out, I make sure I have my money ready so I am not fumbling around in my purse and holding up the line. Wearing satin pajamas makes it easier to move around in bed at night. Being mindful of all my movements is critical so I do not trip, walk into things, or let things fall through my hands.

If my PD does not progress any further, I feel I can deal with the losses it has thrust upon me thus far. However, at times when I wake up in the morning, I think to myself, “What simple task will elude me today?” PD is a disease of loss, the loss of some of the most, mundane things in life many of us (including myself) take for granted. These include:

  • Holding a purse or newspaper firmly under the arm
  • Folding laundry
  • Tying shoes
  • Buttoning a shirt
  • Putting on a seat belt
  • Zipping a jacket
  • Opening a package
  • Cutting a salad

These are mindless tasks everyone does almost every day. Many of us with PD can no longer perform these daily rituals without assistance. If PD has not totally disabled us, some of us may still complete the task unassisted, but it requires intense concentration and focus on our part. It is almost as if we have reverted to being a child again.

Still struggling

It is now mid-2017. I continue to struggle with my worsening PD symptoms, and I am still not on any prescription medications.

All the “snake oil” solutions online make it even more difficult to find relief from my symptoms. On more than one of my PD-related blog posts, some unscrupulous individuals have responded with comments about the great herbal or vitamin supplement that has “cured” their PD. There are so many scammers out there, people and companies that prey on those who are so desperate for relief. I think I can speak for many of us with PD when I say we want to believe there is one thing that can help our symptoms or cure our disease, however, it is so difficult to separate what works and what doesn’t work.

Although I continue to exercise, meditate, and maintain my vegan diet, I fully realize I need more help.

Stop the roller coaster — I want to get off!

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

56 comments

  1. Tom Casey says:

    Treatments with young blood plasma (18 – 25 year old volunteer donors – the NuPlasma blood bank in San Marcos, Texas), now available via prescription from physicians throughout Texas. Stanford University’s first PD patient, Dr. Nan Little, has been virtually symptom free for more than a year after receiving two-liters of young plasma infusions (administered via a simple IV). Very safe, 10,000 units are administered every day, but using exclusively young plasma is new science.

  2. Jose Antonio Mata says:

    Yo padesco desde hace 10 años de EP , me e aislado, vivo en la playa en mi casa solo. Los medicamentos me funcionan a la perfeccion pero mi deseo no estar solo me desespera. tengo 67 años, los sintomas casi no se me notan. Pero eso no es mi consuelo. Yo creo que si encontrara pareja me sentiria mejor.
    Tengo anciedad y tomo 1/4 de tableta al dia, pero solo la tomo cuendo me siento con anciedad.

    • jean mellano says:

      here is translation: “have been a PA for 10 years, I am isolated, I live on the beach at home alone. The drugs work perfectly but my desire not to be alone makes me despair. I am 67 years old, the symptoms almost do not show. But that is not my consolation. I believe that if I found a partner I would feel better.
      I have anxiety and I take 1/4 tablet a day, but I only take it when I feel anxious.”
      I am so sorry you feel isolated and alone. Please don’t despair. Perhaps you can do some volunteer work to help others. I know that helps me take focus off myself and I see that others are much worse off than me. A good friend of mine told me if we all put our problems into a basket, we would all pull out our own. I believe she is so right.

  3. anne bradshaw says:

    Jean, I was sorry to read about your experience with the Parkinsons drugs. I have finally retired from work following Deep Brain Stimulation surgery for Parkinsons symptoms and am finding it very different having worked all my adult life.

    You are right it is a disease of loss and totally unpredictable from one day to the next no matter what drugs you take. It is the little things you can’t do that make me jealous like dancing, getting out of a chair or the bath, turning over in bed,putting on
    shoes and trousers quickly. I feel the only thing I have gained is weight and joint pain!!

    I hope you persevere with different medications because if you can find the right one for you they do work – have you tried co-bendelopa?

    • Jean Mellano says:

      Hi anne. Thank youfor your comment. As you will read in my next column, I will further elaborate on my PD journey which does include prescription meds. Yes, it is the simplest of tasks that frustrate me so much and how do you explain to someone without PD that you cannot tie your shoes or fold clothing . Forget about putting on a sports bra! I have not heard of co-bendelopa but will mention to my neuro next time I see him.

  4. Jean, I too wrote about the “snake oil” salesman, and received the same emails from these unscrupulous people touting their “cures”. It is appalling how they prey on those of us seeking relief. Keep on doing what you are doing – the exercise is most important. But consider going on to Sinimet or another dopamine drug, even if the others made you sick. Give your body a chance to adjust to the drug – it may take a couple of weeks. You don’t have to be miserable. And know that there are many of us out there who have gone through the same thing and will there for you.

  5. Fran Lo says:

    Hi, Jean,
    I, too, struggle with some symptoms that get better with exercise, but some that don’t (the big one for me is balance which I can only improve somewhat). I’ve systematically tried different supplements and diets to see which help – I can tell which didn’t work for sure. Very frustrating – I feel like I’m doing everything right, but it’s still not enough. Don’t get me started on the snake oil scum. Hope you find a combination of exercise/diet/medications that works for you.

    • Jean Mellano says:

      Hi Fran. Thank you for sharing. What did NOT work for you? That is one of the more frustrating aspects of the disease, how one solution may work wonders for some, only to fail miserably for others

      • Fran Lo says:

        Hi, Jean, I had a disastrous experiment in trying a ketogenic diet. I tried Bulletproof coffee to put me into ketosis – ended up with days of diarrhea, but much worse, it made my balance much worse and I’m still struggling to be back where I was. Tried CoQ10 but it made no difference at all, and it’s pricey, so I stopped. Tried Vitamin C megadose – 1/2 gram 4x a day to reduce dystonia in my foot – that helps! Yay! I do feel like a guinea pig, though.

        • Jean Mellano says:

          Thank you Fran for sharing this info. I am sorry to hear of your struggles. For all of us, sad to say, it is trial an error. I am on c0q10 1200 mg per day for several months. Ubiquinol is supposed to be better as it considered a ‘purer’ form of c0q10. When my c0q10 runs out, I will do the ubiquinol. I hadn’t heard about mega vitamin c.

        • David says:

          2gms of Vit C doesn’t seem to be in the Mega category! Pauling’s basic intake, that required getting used to, was 19gms. In illness via IV this goes up exponentially into hundreds of gms e.g. HIV.

  6. Marc Anderson says:

    Ms. Mellano,

    I am 72, my symptoms 1st appeared in 2009, to date I am not taking any Parkinson’s pharmaceuticals, and I empathize with everything you are saying.

    This may or may not be of help to you, but it’s worth an hour reading.

    Please check out the Parkinson’s forum on HealthUnlocked. Put thiamine HCL in the search window. There are many people on that forum who are reporting good results from this. As you know what works for one person, does not necessarily mean it’ll work for others but there are so many PWP reporting good results it’s worth reading about.

    Many of them are in touch with a Dr. Constantine he in Italy, who you might want to look up as well. He is been consulting with them for free. No one on this website is selling anything.

    Perhaps my profile will give you some more information.

    (Marty Hinz has been discredited. You can find out more information on a website called QuackWatch. He admits to not having seen the patient since 2002 and it gets worse.)

    If you have any questions, you’re welcome to email me.

    I enjoy your blog. Best to you

    Marc

    • Jean Mellano says:

      Hi Marc

      Thanks for this information. I had heard about dr. Hinz and saw the quackwatch entry about him. It is so hard to separate truth from fiction on the web. I would not be surprised if quackwatch is run but rhe pharmaceuticals LoL. I have heard some good things about thiamine IV. And will look into what you have posted.

      • Marc Anderson says:

        QuackWatch is definitely pro pharmaceuticals and anti-supplements. That’s pretty much the purpose of that website. I recently had an hour long talk with the doctor who wrote that article and as I expected, he was dismissive of supplements. I, too, think they are somewhat overrated, but I take a dozen.

        Anyway, the anecdotes about thiamine are very robust. Dr. Costantini is following 2,500 patients on 4 g per day of thiamine. There are no placebo-controlled, double-blind, peer-reviewed studies, but the positive anecdotes are too many to ignore.

  7. JOHN HOLMES says:

    Hi…. wondering if you ever looked into stem cell treatments. There’s a place Seattle saying they have a 60 some % of success in treating PD. It would be nice to know this is true before a person was to spend thousands of dollars… think positive there’s a cure coming…. John

    • Jean Mellano says:

      Hi John. No, I have not tried stem cell therapy. I would like to think there will be a cure for PD in my lifetime, but because the disease affects everyone so differently and no one can seem to say what causes it, I am not so sure anything is on the horizon. Besides I don’t think it is in big pharma’s best interest to find a cure since they would lose there revenue stream from PD meds. 🙁

        • Jean Mellano says:

          Lou, I believe if that was the case, it would be a one shot influx of cash to pharma if it was a true cure. Pharma would lose the monthly revenue stream of all the prescription drugs that PD patients take on a daily basis for the rest of their lives to alleviate their symptoms. And these meds are not cheap!

  8. William K. Kruesi says:

    Most of the research on Parkinson’s Disease has 3 faults common to the symptomatic treatment of chronic degenerative conditions: 1) the investigations focus on changes in the brain, at the molecular level (faulty genes/gene expression/proteins/cell products/CNS inflammation) when the primary cause is most likely at a distant site. 2) The studies begin at the end-point of a lengthy disease process, far downstream from the initiating insult, and 3) the desired outcome is a therapy that can be manufactured, marketed, and sold. Since 2008 and ongoing research on the human microbiome, Functional Medicine practitioners now have diagnostic tools, clinical studies, and individualized treatment plans for many autoimmune and chronic degenerative diseases, including PD. Briefly, the problem is in the gut. Individuals with certain HLA (Human Leucocyte Antigen) types, and pathogens in the digestive tract, can suffer systemic inflammation of a specific tissue through a phenomenon of ‘molecular mimicry’. The immune system targets a pathogen, antigens, or a motif of these, that share some amino acid sequence of the patient’s tissue, and both get recognized by white blood cells as targets for destruction. The result is systemic inflammation of specific tissues or organs, as well as the initial local inflammation in the gut. A complex mix of food antigens, pathogens, weaknesses of digestion or local immunity, unfavorable dietary factors (food allergens, insufficient fiber, sugars, et al.), emotional stress, adverse effects of medications, etc. become permissive for gut dysfunction that eventually can be manifest as systemic illness and unmanageable disease syndromes. Many patients instinctively know there is something about their diet, lifestyle, or medication that needs to change, but do not have a physician that understands or appreciates how to promote self-repair. Gut rehabilitation is similar to reclaiming abused crop or strip-mined land. One has to follow the proper sequence for repair, from step one– eliminate the “weed” species (pathogens, parasites, bacterial overgrowth) that are impediments to recovery, to step five– promote repair of the gut barrier function. Once this 3-month process is complete, the patient is back to a state of self-maintenance, without being dependent on drugs, doctors, or surgery, and formerly intractable disease processes can be reversed. I know, I fully recovered from a debilitating case of reactive arthritis, without drugs, and devoted 20 years to doing the same for cats and dogs (veterinary practice). I hope this provides a new perspective for you and others struggling with PD. For starters, see the free course at: https://www.ifm.org/learning-center/introduction-functional-medicine/ (1.5 Hrs CME).

    • Jean Mellano says:

      Hi William. Thank you for your in depth comment. I strongly believe many of the illness we suffer from are directly related to our lifestyles(diet and exercise). As such, I will continue down that path. I only wish there were more functional medicine practionioners to help those of us who suffer

      • David says:

        So difficult for a MD/DO/ND to become high profile. They risk being ostracized, losing their license, even their life. There are powerful and wealthy forces as you suggest reinforcing the status quo which is very rewarding. Laurie Mischley ND is bravely treading on new ground, looking at positive deviants i.e. people who stay afloat in the midst of the Titanic that is PD when they should be sinking, fast.

        • Jean Mellano says:

          David I had an integrative oncologist (md) who was very holistic. Sad to say, it was reported he took his own life in 2016 or 2017, however, conspiracy theories abound. Kudos to Laurie Mischley for forging her path.

  9. Donna says:

    Hi Jean,

    Please try different combinations of vitamins/supplements. I have had a lot of luck taking Milk Thistle & Vitamin B super complex in the morning, and N-acetylene in the evening. I take no PD meds at all.

    There is also a book out about how combinations of supplements works for PD & Hutchinson (the book author recommends a combination of Q10, Vitamin C and E, and some others. The key is taking a group of vitamins /supplements, not single ones. Good luck!

    • Jean Mellano says:

      Hi Donna. Thank you for sharing your experiences.i will continue to take supplements, however, for me, that in conjunction with exercise and diet does not appear to be enough.

  10. Val says:

    The drugs helped me eventually, unfortunately it took a long time to get them right, it took a long time to not feel ill. To start with I vomited every time I took them, then I changed neurologists, and he told me I was been given too much, (this was sinemet) so take a different tablet (madopar) and another one for nausea. It took about 8 months or so to stop feeling so ill, I could only lie down when I took the drugs until I felt a little better. However now, my third neurologist has me on a dose that gives me the best feeling of not struggling all the time. I was even given a slow release one to take overnight, helps me sleep better without so much pain. Of course to be honest there is another adjustment I needed to make also, and that is what I can do, and what I can’t do. I had to learn to “adjust” and to not expect to be physically where I was before the onset of Parkinson’s . It is what it is. Once you get your head to that level things will be easy. I exercise daily, eat properly, get adequate sleep, and with my new drug regime, I am the best I have felt for years, but I took a lot of suffering to get here.

    • Jean Mellano says:

      Thank you for sharing your PD experience. I believe you are right on target with attitude. As a former athlete I was crushed that I could no longer do things that I used to do. the energy it takes to fight my new reality is all consuming.

  11. Hi Jean, yes living with PD is a struggle. I’m very adventurous in trying new treatments. I take several supplements daily, including Restore Gold which does help minimize my symptoms. I take 6 mg of Ropinerole once daily and 10 tablets of Carbadopa/levadopa 25/100 daily (2 every 3 hours). If I wait too long between doses, I start to freeze. I’ve had 2 treatments of Stem cells in San Diego at Stemgenex. I was skeptical at first but after a few months my symptoms improved and people started telling me that I looked and sounded better. I had my first treatment in January 2016 and the second one year later Jan 2017. I decided not to go again this year as it is expensive and hopefully the treatment will last a while. in the meantime, i stay active running a business, playing golf and hoping for a real cure to surface. Best wishes! Marty Bevilacqua

  12. Lou Hevly says:

    I don’t see Sinemet(Carbidopa-Levodopa) mentioned anywhere on this page. I’ve been taking it for a year and it seems to be having a positive effect.

    • Jean Mellano says:

      Hi Lou. I started my monthly column in April and it chronicles my PD journey since my diagnosis in 2015. In the next 1 or 2 posts I will get current in my quest for PD symptom relief and sinemet is a part of that, but not without trepidation.

    • Lou Thomas says:

      I had exactly the same reaction – where is the mention of carbidopa-levodopa, the most important, “gold standard” for Parkinson’s symptom relief? If your doctors did not suggest this, then you have been getting very bad advice.

      • Jean Mellano says:

        Thank you Lou for your comment. My column is about my PD journey starting from my diagnosis in 2015. My latest post brings me to about mid 2017 in my journey. I will talk about sinemet in a future post. My intent for starting my column with my PD journey is to show the frustrations PWP deal with. My hope is that caregivers and those without PD can get an appreciation for the challenges we face. I also want people that have PD to know they are not alone in what they are dealing with. I have two other earlier posts that show my earlier experiences after diagnosis

  13. Peter says:

    I found intense exercise in the form of pickleball to be extremely helpful lessening my symptoms as I couldn’t tolerate sinemet. I also take Mucuna, acetyl-l-carnitine, magnesium, ubiquinol,pantethine, nicotinamide riboside, vitamin C and experimenting with a few others. I am doing better than a year ago.

    • Jean Mellano says:

      Hi peter. Thanks for sharing your story. It never ceases to amaze me how differently all are in how we react to various treatment portions. In my next column or two I will continue telling of my journey and what I feel has helped me. Exercise is key!

  14. Carol Rothfeld says:

    Thank you Jean. I can easily relate to your experiences. I am a breeder of American Shorthair Pedigreed cats. Cats of my breeding as well as their offspring are in catteries in many parts of the world. Due to my limitations caused by Parkinson’s I have had to curtail my involvement in my beloved hobby that I have been in for 35 years. The most difficult part of the disease is being able to accept my limitations. I have tried a number of different medications with limited improvement. I am now taking Sinemet Slow Release. I am also taking a number of vitamins and other supplements. I have started PT and OT. I am looking into DBS. Have you considered this?

    • Jean Mellano says:

      Hi Carol, I thought I responded to your post… hate it when that happens! I relate very well to not being able to do something you love like you used, but no longer can because of PD. Acceptance is key.. I am not ready to think about DBS, although I know someone with early onset PD who did DBS and she says it was life changing.

  15. Hi Jean, My husband is suffering from young onset parkinsons he is 47 diagnosed 3 years ago. he will not take any meds whatsoever he knows they make you feel worse with all the terrble side effects. He struggles every minute of the day the extreme stiffness, fatigue, depression anxiety etc. The only thing he does take a a Mucuna Prureins levadopa supplement that I purchase for him online. Its in a powder form .It helps him be able to shower shave and workout as he can move for 3 hours when he takes it. But once it starts wearing off, he feels worse than ever. Its terrible and cruel and we have to keep our faith that a cure will come asap. We believe alot of it has to do with your emotional state and obviously the more worried and afraid you get the worse your symptoms will debilitate you. Try to keep the faith. ♥

  16. Ricardo R says:

    I have developed a combination of intervention for my father’s PD early stage. Some suggestions: Find out a 2004 publication of life extension magazine on PD (there is a good table in it); read “the end of alzheimer’s “dale bredesen (similar table to PD, not the same, but they share similar insights); read on laser light therapy (you can buy 100mw 650nm and 808nm (they have complementary roles) on ebay for 20 dolars each (a 5 mm optic fiber can be used to insert in the nostril – it is better to polish the tips… buy an optic fiber polishing kit on ebay for 12 dollars) or you can buy a device called EC Therapy (sold in Brazil – it is extremely cheap compared to other similar devices i have found and it comes with a tube…) (either of them can be used to do ILIB on the arm artery shining the laser from outside – there are plenty of studies too) (i also suggest ingesting some supplements like ALA, clorophyle (to regenerate CoQ10), gelatin, creatine, a bit of glutamine, etc);

    silver bullets: Coimbra protocol (check youtube channel “vitamina d medicina e saude”) (it ispretty safe and exceptionally effective if coupled with a gluten free diet); red meat free diet (fish and eggs allowed) combined with a strong B2 (and B complex) supplementation – both protocols were developed by a University professor called cicero galli coimbra.

    sorry to say,but being vegetarian is also dangerous. you lack collagen what increases leaky gut risks , lacks glycine, increases brain shrinkage (lacking omega 3 and b complex) and other issues (fish and eggs are much safer than red meat and poultry in general)

    i could write a lot more, but there is enough there to make a difference in your life.

    • Jean Mellano says:

      Ricardo, thank you so much for all of your suggestions. It seems as though you have done a lot of research. There is a lot to digest. I am a vegetarian for moral reasons mainly, but I do eat eggs from “happy” chickens (chickens I have met that are free roaming LOL) Your father is lucky to have you in his life. May he continue to improve..

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