My Struggles Worsen Despite Natural Treatment Experimentation

Jean Mellano avatar

by Jean Mellano |

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struggles

(Courtesy of Jean Mellano)

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.

Join our Parkinson’s News Today forums to discuss living with PD.

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.

Comments

Tom Casey avatar

Tom Casey

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.

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Jean Mellano avatar

Jean Mellano

Thank you Tom for your comments...so many options

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Tom Casey avatar

Tom Casey

Thank you, but respectfully, no options appear remotely equivalent. My mother died from PD and I personally witnessed her relentless decline. I am attaching links from Stanford University's clinical and a blog from Dr. Little, who is their first patient. Plasma is FDA legal(in wide use since 1918, but never before available exclusively from 18 - 25 year old donors). AGPatelMD.com in Dallas (convenient for Parkinson's News to interview) has achieved similar results as Nan in their first patient - a cessation of tremors and systemic recovery. Since April, now performing infusions to all interested patients, including for Alzheimer's, which has also shown previously unprecedented recovery.
http://www.nanlittle.com/parkinson-s-plasma-study-patient--.html
https://clinicaltrials.gov/ct2/show/NCT02968433
http://time.com/5010030/young-blood-treating-alzheimers/

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Jean Mellano avatar

Jean Mellano

Tom, thank you for your informative comment. I am so sorry for the loss of your mom and the struggles she had. I need some time to digest all you have posted. Thank you again.

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Tom Casey avatar

Tom Casey

Dr. AG Patel in Dallas has infused a Parkinson's patient with NuPlasma. Same location as your publisher. Might want to interview him. Dr. Derek Lou in Houston as well.

Jean Mellano avatar

Jean Mellano

Hi Tom, thank you for the suggestion. I have passed this info on to the publisher.

Isaura Santos avatar

Isaura Santos

Dear Tom! Please consider joining the Parkinson's Forums. Your experience would be much appreciated :) https://parkinsonsnewstoday.com/forums/

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Elliot Gove avatar

Elliot Gove

Nan's gives her thoughts and experiences after the trial here:
http://www.nanlittle.com/parsing-parkinson-s.html
She suggests that young blood plasma plus exercise may be the way to go.
Tom was wrong on one important point though!! He said Nan was nearly symptom free for a year after the infusions. Not true. First, some symptoms got better but others appeared. Second, TWO MONTHS after her last infusion, she wrote that she was "still doing quite well," but that
"the symptoms I got rid of slowly are sneaking back into the matrix.

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LINDA avatar

LINDA

Sorry to hear about your failed trials and tribulations. I am new to PD and have hand tremors. I take some of the usual deterrents such as fish oil, magnesium, Astaxanthin and CoQ10 than my naturalist MD
prescribes. I have found since adding the
CoQ10 my tremors stop by bedtime. Just wanted to share! Thanks.

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Jean Mellano avatar

Jean Mellano

Linda, thank you for sharing. I tried coQ10 for about 6 months and it didn't seem to help me. As it is with PD, what works for some does not work for others :-(

Sharon avatar

Sharon

I'm currently pursuing my undergraduate degree in Traditional Chinese Medicine and a license to practise after my graduation. In clinical practice with my teacher mentor, we see positive results for our patients with Parkinson's Disease. It does not reverse the condition, however it slows down its progression. My teacher has a 60+ year old patient who has been seeing him a few times a week for the past 6 years. So far, her western medications have been maintained at the same dose on the day she was diagnosed. She goes to see him by herself every time. The only symptom she has (which is the same as 6 years ago) is the involuntary movement of her right hand. I think this is a good sign that acupuncture can help. I can't remember if herbal medicine was prescribed, but the result from acupuncture made an impression for me. Hope this helps.

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Jean Mellano avatar

Jean Mellano

Hi Sharon
Thank you for sharing. I did try acupuncture for 6 months and it didn’t seem to help me. :-(. However, as it is with PD, some remedies work for some while not for others.

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Silo avatar

Silo

Hi Tom thanks for the information about the young plasma infusion in Texas I saw news clip on fox 26 station in Houston Texas 2 months ago I am really interested can anybody get it how do I go about it I really appreciate it if you can put a phone number with it my name is silo Yonkers ny

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Silo avatar

Silo

Hi Tom thanks for the information about the young plasma in Texas

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Jose Antonio Mata avatar

Jose Antonio Mata

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.

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Jean Mellano avatar

Jean Mellano

Jose. Thank you for your comment. When I get back to my computer in a week or so, I will translate what u have written.

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jean mellano avatar

jean mellano

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.

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anne bradshaw avatar

anne bradshaw

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?

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Jean Mellano avatar

Jean Mellano

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.

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Isaura Santos avatar

Isaura Santos

Hello Anne! Please consider joining the Parkinson's Forums. Your participation would be much appreciated :) https://parkinsonsnewstoday.com/forums/

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Sharon L Krischer avatar

Sharon L Krischer

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.

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Jean Mellano avatar

Jean Mellano

Thank you sharon for your encouragement. As you will read in my next column, my PD journey continues and I do try prescription meds again

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Isaura Santos avatar

Isaura Santos

Hello Sharon! Please consider joining the Parkinson's Forums. Your experience would be much appreciated :) https://parkinsonsnewstoday.com/forums/

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Lillian Latham avatar

Lillian Latham

Dr Constantini is currently unavailable because of ill health. I am working on now the 500mg tablets and they are large. I tried breaking them in half but they still made me choke My solution is to crunch them and swallow them with water. The taste is bad but not too bad. I would like to encourage everybody to read the various comments and forum sections on HCL. PwP give honest opinions on HealthUnlocked.

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Jean Mellano avatar

Jean Mellano

hi lillian, i am sorry to hear about Dr. C. I have registered on Health Unlocked and will check it out. One of the things that frustrates me so much with this disease is that some remedies work for some and not for others. My track record has not been good. Other than exercise and attitude, not much else seems to help me :-(

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Jay avatar

Jay

Use the 500 mg capsules. Easy to swallow

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Fran Lo avatar

Fran Lo

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.

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Jean Mellano avatar

Jean Mellano

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

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Fran Lo avatar

Fran Lo

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.

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Jean Mellano avatar

Jean Mellano

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.

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David avatar

David

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.

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Denise Crouse avatar

Denise Crouse

Hi Fran, I’m curious about your disastrous experience with the keto diet. My son & daughter in law desperately wants me to try it. I’ve had PD for 20 years now, currently I’m 51, have been on numerous prescription medications (azilect, selegaline, requip, rytary, neupro, etc) and most have worked for their intended purpose and some have resulted in unpleasant side effects (hallucinations, compulsive shopping, dyskinesia) so those were eventually replaced with others. I’ve had DBS on both sides(1st one done in 2015 & second in 2019. DBS has been very helpful to me & well worth the inconvenience. Haha! I just started a 12 week plan with the help of a close friend who has been trained in numerous natural treatments (aromatherapy, foot reflexology, reiki, sound bowls, muscle testing, & a slew of research/study on healthy eating, gut health, benefits of water, exercise & sleep, and supplements) & though it’s going to take a lot of will power ( I LOVE chocolate & sweets, oh & breads/pastas!) and outside motivation as I have many days with no motivation to even get out of bed. Thank you for your reply! 😀

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Jean Mellano avatar

Jean Mellano

Denise. Thanks for sharing your experiences. Several of my friends with PD have said meditation has helped them. I need to keep trying it, since I usually fall asleep I get so relaxed 😎

Isaura Santos avatar

Isaura Santos

Hi Fran! Please consider joining the Parkinson's Forums. Your participation would be much appreciated :) https://parkinsonsnewstoday.com/forums/

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Marc Anderson avatar

Marc Anderson

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

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Jean Mellano avatar

Jean Mellano

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.

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Marc Anderson avatar

Marc Anderson

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.

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Jean Mellano avatar

Jean Mellano

Dr. Barrett, thank you for your insight. You are so right, there are way too many boasts of PD 'cures' I find it so disheartening sometimes.

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Isaura Santos avatar

Isaura Santos

Hello Marc! PAR News Today is starting it's own Forums. Your participation would be much appreciated :) https://parkinsonsnewstoday.com/forums/

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Marty Hinz, MD avatar

Marty Hinz, MD

Marc I have been actively seeing patients almost every day of every week for over 20 years now. Since 2002 I have actively seen patients in consult almost every day. Please retract your statement. Things you read on the internet might not always be true. Marty Hinz, MD

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Larry Fredette avatar

Larry Fredette

Dr. Hinz,
Can you recommend a
Hinz trained doctor who can help with your protocol in Illinois

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Brian avatar

Brian

Dr. Hinz,
Interesting that you ask Marc to retract his statement.
You have had 14 articles retracted on PubMed.

https://pubmed.ncbi.nlm.nih.gov/?term=Hinz%20M%5BAuthor%5D%20retracted

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Jay avatar

Jay

Use the 500 mg capsules. Easy to swallow

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JOHN HOLMES avatar

JOHN HOLMES

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

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Jean Mellano avatar

Jean Mellano

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. :-(

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Lou Hevly avatar

Lou Hevly

Wouldn't it be true though that the big pharma company that came up with the cure would make a fortune?

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Jean Mellano avatar

Jean Mellano

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!

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Don Reneau avatar

Don Reneau

I am a physician myself. My wife tried stem cell therapy in California at what we consider the start of her disease. We spent $25,000.00 and saw little or no benefit. We are still searching for the magic bullet but as of yet it has eluded us.

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Jean Mellano avatar

Jean Mellano

don, yes, the holy grail that always seems to allude us. i truly believe exercise is the most important thing we can do to slow progression and ease symptoms

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William K. Kruesi avatar

William K. Kruesi

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).

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Jean Mellano avatar

Jean Mellano

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

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David avatar

David

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.

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Jean Mellano avatar

Jean Mellano

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.

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judith griffin avatar

judith griffin

Thank you so much for a great post. My experience has been that clinicians view treating the gut as an add on type of thing one can do to help the motor meds do their thing. Even exercise still takes a back seat to "motor meds"in the treatment protocol (grassroots movement is simply not going to allow this for long) Before 1980 there was not one Journal article in the world that mentioned exercise as a treatment for Parkinsons or any neurodegenerative disease -----treating the gut has been way behind exercise in mainstream priority. I am about to check out your link but wanted to first thank you for the clarity that you addressed what I consider to be the overriding problem in treating Parkinsons disease and that is exactly as you state in --we ignore the source! Refreshing information - thank you for sharing!

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Jean Mellano avatar

Jean Mellano

Judith, thanks for sharing your thoughts. I truly believe exercise is the best we can do to slow progression, ease symptoms. What I find really fascinating is that researchers are looking at possible subtypes of PD; brain-first and body-first. If there are two subtypes, perhaps that is why some remedies work for some and not for others and may help explain why symptoms vary so much from PwP to PwP. https://parkinsonsnewstoday.com/2020/10/02/parkinsons-may-have-2-distinct-subtypes-study/

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Donna avatar

Donna

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!

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Jean Mellano avatar

Jean Mellano

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.

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larry von avatar

larry von

Donna, how much milk thistle, and q10 and e and c are you taking per day?

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Val avatar

Val

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.

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Jean Mellano avatar

Jean Mellano

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.

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Marty Bevilacqua avatar

Marty Bevilacqua

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

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Jean Mellano avatar

Jean Mellano

Good for you Marty! Thank you for sharing your story. I see your email is on optonline. Are you a fellow New Yorker?

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Marty Bevilacqua avatar

Marty Bevilacqua

Yes, born in Queens, raised in Brooklyn, and living in Rockville Centre, Long Island for 31 years. My business is one mile away in Oceanside.

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Jean Mellano avatar

Jean Mellano

Hi Marty. I grew up in seaford and lived in wantagh for almost 30 years until I moved to greenport. If you are on Facebook, there is a Long Island support group for PD.

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Lou Hevly avatar

Lou Hevly

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.

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Jean Mellano avatar

Jean Mellano

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.

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Lou Thomas avatar

Lou Thomas

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.

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Jean Mellano avatar

Jean Mellano

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

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Peter avatar

Peter

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.

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Jean Mellano avatar

Jean Mellano

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!

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Carol Rothfeld avatar

Carol Rothfeld

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?

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Jean Mellano avatar

Jean Mellano

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.

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Tina Catanzaro avatar

Tina Catanzaro

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. ♥

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Jean Mellano avatar

Jean Mellano

Hi Tina, so sorry to hear of your husband's struggles. I am glad you are in his life, I am sure you must be a bright spot for him. I wrote a blog about acceptance and I believe it was a turning point for me..https://slippedawayblog.wordpress.com/2018/02/26/acceptance-gratitude-and-attitude/

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Ricardo R avatar

Ricardo R

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.

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Jean Mellano avatar

Jean Mellano

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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George avatar

George

You mention "I believed a change to a gluten-free, no-sugar-added, vegan diet might help my PD symptoms."

As a 68 year old man who has been gluten free for 25 years, and vegetarian for ~5 years, I can tell you your observation seems (very strongly) to be true in my case.

Many have told me "you look soooo good,' esp. compared to several friends with PD, who have not gone gluten free and/or vegetarian.

I was dx'd with PD in 2/08: 11 years ago. I can expand on my background, reasons for going gluten-free & vegetarian, and the benefits I have experienced if others would like to know.

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Jean Mellano avatar

Jean Mellano

Thank you George for sharing. That is encouraging to hear. Are you vegan (no dairy) as well? I was a vegetarian before I was diagnosed and it was for animal welfare reasons. Then , when diagnosed, I had heard gluten, sugar and dairy are inflammatory so I chose to go down the g/f, no sugar vegan path, although, I am not as good as I could be

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Nan Little, Ph.D. avatar

Nan Little, Ph.D.

I was poking around on the computer this morning and found myself so I thought to give you all an update. After 11 years since diagnosis and two years since the infusions at Stanford, I am happy to report that many of the PD symptoms are still at bay. However, all is not perfect. My balance is compromised though I have yet to fall. Still little sense of smell. After two years of not being able to ride my bike due to toe joint replacement and arthroscopic knee surgery, I went for my first rides outside yesterday and the day before and did just fine. During the summer of 2018 we attempted to hike around Mt. Blanc but I wasn’t strong enough to keep up with the group so I wasn’t allowed to go with them...extremely disappointing. That was followed by a delightful river cruise from Paris to Normandy. The back to back trips provided bookends to assess my mobility...too difficult...not challenging enough. My vision is somewhat compromised (probably aging, not PD) and dyskinesia is back, most annoying, but will be treated as soon as the amantadine arrives.

The Stanford study is now in Phase II at several study sites with a different protocol by Alkahest. Information is on line. Since I have had some a-fib experiences I am taking Eliquis, which disqualifies me from participation in Phase II. I see other plasma “opportunities” on line but I wouldn’t go near them. I believe in the research model. Hope this helps.

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Jean Mellano avatar

Jean Mellano

Thank you Nan for your update. It sounds like you will NOT let PD push you around. Kudos to you! Is this the Alkahest trial you refer to?
https://clinicaltrials.gov/ct2/show/NCT03713957?term=GRF6021&rank=1
Unfortunately there are none near me :-(

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Nan Little avatar

Nan Little

That is the Alkahest trial.

PD pushes. I push back. Neither of us wins all the time.

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Jean Mellano avatar

Jean Mellano

Thank you Nan, keep up the good fight!

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Lynley avatar

Lynley

Hi Jean, my husband has had improvements with high dose thiamine, Hardy’s daily essential nutrients and a change in diet to remove gluten, sugar, processed foods. I agree with Marc above. Have a look at the HealthUnlocked website as there is a great support network there.

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Jean Mellano avatar

Jean Mellano

Thank you Lynley for your response. I reached out to Dr. Costantini and never heard back. i tried taking 500 mg B1/day, but it is a huge horse pill that is very difficult for me to swallow. Also did gluten /sugar free plant based diet, for over 6 months, no change in symptoms :-( I will revisit healthunlocked.

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Tiago Henriques avatar

Tiago Henriques

You can buy vitamin b1 HCl in powder form and mix it in water. Also, try allithiamine (a form of b1 that's more easily absorbable. According to what I read in healthunlocked You'd only need to take 100 mg (two pills)

ps.: We haven't tried this ourselves yet but I'm in the process of actively researching this topic. So I thought I might share this with you.

Hope you the best

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Jean Mellano avatar

Jean Mellano

Thank you Tiago, so many options and we all re-act differently to diferent treatments. Please share your experiences with this.

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Rebecca Cerecke avatar

Rebecca Cerecke

Dr C had a stroke and has passed away.

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Ruth Gravitt avatar

Ruth Gravitt

Are you doing regular sunbathing? Melanin from that may go to the substantia nigra as neuromelanin which disappears with PD.

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Ruth Gravitt avatar

Ruth Gravitt

Jean, do you do sunbathing for the neuromelanin effect?

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Jean Mellano avatar

Jean Mellano

Hi Ruth, thank you for your comment. I have pretty much avoided the sun (cancer scares) over the years but I am now getting out for some rays when weather is good. Will also be trying light therapy soon.

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mariolanza avatar

mariolanza

You could do quite well, with perhaps rather much more "benefit per effort," if you switch to HealthUnlocked.com and become a member. It's not for the support, though there is that, it is for the far better information than you seem to be getting, sifting the useful from the wasteful and the legitimate from the scammers.

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Jean Mellano avatar

Jean Mellano

yes mariolanza,i do despise the scamming nonsense out there.I will look into healthunlocked.

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Kurtis avatar

Kurtis

You tried two drugs for PD, then one of the most useless antidepressants on the market and then just gave up?

Mucuna pruriens is just a more expensive "natural" source of the dopamine precursor levodopa, which you could get much cheaper on a prescription and have far less problems dosing with. What is the point of going the "natural way" when you can get the exact same thing in pure, controlled dosage forms on a prescription and not have to eat a lot of potentially nausea-inducing plant powder?

Parkinson's Disease is a serious neurodegenerative disorder and the only thing you can do is treat the symptoms and try to halt the progression. One of the best things to do is to start off with taking Selegiline, a MAO-B inhibitor, which has proven neuroprotective properties and helps to slow down the progression of PD. Rasagiline is a newer MAO-B inhibitor but it does not have any proven benefits over Selegiline and may or may not have the same neuroprotective properties as Selegiline. It is also much more expensive. If a MAO-B inhibitor alone does not provide enough relief then that is when you add levodopa into the mix. Taking only levodopa or carbidopa are other options.

There is no easy way around PD but ignoring drug treatment and trying to do it the "natural way" is just silly and offers no benefits, and you are basically torturing yourself for nothing. What is even worse is that not treating it can often lead to an even more rapid course of deteroriation. Your brain NEEDS the dopamine to maintain neurons and circuits, without it the neurobs and brain cells just die.

As for depression associated with PD Selegiline + Levodopa can often takes
care of it. If not then there are plenty of drugs on the market that have much less side-effects than garbage like Viibryd. Stick to the old proven ones if you need anxiety/depression relief like Zoloft, Prozac, Wellbutrin or tricyclic antidepressants like Nortriptyline. Depression is also a core symptom and natural progression in Parkinson's Disease, there is no way around this either so once again best thing you can do is to try and treat it with medicine.

There is literally no point in trying "natural treatments" for something so severe as PD. It is an irreversible neurodegenerative disease and focus needs to be put on halting its progression(Selegiline) and symptomatic treatment (Selegiline, levodopa, carbidopa and if necessary: antidepressants).

With good treatment one's life span can be extended significantly and quality of life can be greatly improved as well. As always there is no perfect solution and treatment that comes entirely without side-effects.

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Jean Mellano avatar

Jean Mellano

Thank you for your perspective. No two people are alike with PD and we all react differently to different treatments. I choose not to rely on big pharma since they can pull a drug off the market at any time like Merck did with Sinemet (https://slippedawayblog.wordpress.com/2019/06/16/sinemet-shortage-the-silence-is-deafening/) Unless you have walked a mile in someone else's shoes, you should not judge their choices... 'do it the “natural way” is just silly and offers no benefits'

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Andrea Marshall avatar

Andrea Marshall

Hi everybody, my body has been buzzing internally since May 2019. It is more noticeable when at rest, going to sleep and on waking. Some days I am dizzy and very tired. Some days I am fine. Some days my legs ache and feel heavy so my walking is slower. I saw my General Practioner in June (GP in the UK) and told him that I suspected early onset of PD. He referred me to a neurologist who specializes in Parkinson's Disease. He didn't think it was PD but said he would reassess me in three months time. That was in July. I have the same symptoms but occasionally I feel nauseous it is that bad. One day all I wanted to do was sleep as I was so exhausted. I have worked with PD patients. That is why I instantly assessed myself as early onset PD. I am 65 and rarely suffer any illness. So these symptoms are very disconcerting and life-changing for me already. I don't want to wait for a clear diagnosis. In the UK that could take months if not years. I am therefore exploring self-medication and see how that goes. I am not depressed or anything but just fed-up with these internal jitters. It feels like someone has plugged me into a vibrator machine. Obviously this symptom alone needs energy like anything on a cellular level, especially when it connects to muscle tissue. This causes muscle aches and pains and exhaustion. So, this is where I am at the moment. If this isn't PD then I will jump for joy. If the internal buzzing is all I ever experience and it gets no worse then I will learn to live with it. Can anybody comment that this is how they first felt PD onset?

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Jean Mellano avatar

Jean Mellano

hi andrea
my first symptom in 2015 was small handwriting. what you describe kind of sounds like what i call controlled dyskinesia where i feel like my body wants to writhe but i control it so no one could see it. you are right about the energy that is used. yikes! fatigue also plagues me as well as bradykinesia. we are all so different in our symptom manifestations. do you exercise?

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Andrea Marshall avatar

Andrea Marshall

Hi Jean,
I walk the dogs several times a day and am always busy. I sew and have woodwork projects galore. I am a consummate freecycler so I get about quite a bit collecting stuff and renovating where necessary. I support a homeless person's hostel with some of my finds. I have a little exercise routine that I do while getting dressed in the morning. It looks as if I'm dancing - a bit like Tai Chi in some ways. I do this as I have a long-standing problem with my spine.
There is a Parkinson's Club only one mile from me and I have already spoken to the organiser there. I have read everything there is about Parkinson's and I am not a fearful worrier about the condition if I have it. I am more concerned about how my husband will cope with me. He doesn't like illness, blood or seeing injuries. I have worked in hospitals most of my life so I understand what impact such illnesses has on patients and carers alike. However, trying to stay positive when you are so fatigued is not easy is it?
I am waiting for my next appointment for October to arrive from the neurologist - if they don't forget that is. Luckily the hospital is only half a mile from my front door. If he still says he doesn't think it is PD then I shall make a nuisance of myself with my own doctor to get some more tests done. This just can't be nothing and nothing to be concerned about. I have never treated consultants like gods. They don't know everything and I have occasionally instructed and even proved them wrong on certain issues over the years. So I'm not afraid to fight my own corner on this. It will be interesting how this develops and if anything works to control it. But like you say Jean, PD hits each victim differently. What works for one doesn't necessarily work for another PD sufferer. My favourite comedian Billy Connoly suffers from PD. If he can laugh at his condition then who am I to complain? Thank you for your input. Kind regards

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Jean Mellano avatar

Jean Mellano

Hi Andrea, thanks for sharing. It sounds as though you are doing all the right things to combat your health issues. Socialization, volunteering, having a purpose you are passionate about. We can only do the best we can and that is half the battle. Good luck to you.

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Jack Aubrey avatar

Jack Aubrey

Hi Jean, first a response to Kurtis, then to you.

Kurtis, you need to educate yourself on Mucuna Pruriens vs. synthetic levadopa. Yes, you can isolate levadopa from Mucuna and synthesize it and you'll have the same compound, but consuming Mucuna Pruriens as a standardized extract, typically at 20% or 40%, diluted in water, has an entirely different effect than Sinemet. Notably you get faster onset, longer, more effective on time, and slower wear off. Please read the definitive double blind, crossover study by Katzenschlager: https://jnnp.bmj.com/content/75/12/1672.

Next, you'll want to read this scholarly article by the Spanish neurologist Maldonado: https://www.intechopen.com/books/parkinson-s-disease-understanding-pathophysiology-and-developing-therapeutic-strategies/mucuna-and-parkinson-s-disease-treatment-with-natural-levodopa

In conclusion Kurtis, Sinemet and/or Lodyson have a role to play. Our neurolgist likes amantadine and we are trying it. However, these drugs should not be relied upon as the sole source of treatment for PD. Any neurologist worth their salt will tell you that while symptoms like dyskinesia are partly due to progression of the disease, drugs like Sinemet also have been shown in study after study to cause and or worsen these symptoms over time.

Back to you Jean. Try Mucuna Pruriens as a 40% extract. I'm a caretaker for someone who buys it in bulk. It's more expensive than Sinemet for sure, but it's not that expensive either. I'm not going to plug where we buy it here because I'll get accused of hyping a product when I have no interest in doing so. You will also need to follow some protocol to know how much to start with and how much to ramp up to.

Hinz has a pretty good protocol to use as a basic guide, but we realized its shortcomings early on. We took the good, left out the bad and developed our own approach that works very well. Btw Hinz and the protocol he developed has issues and it's overly expensive, but Hinz is not a quack. That dude on Quackwatch trashes everyone who's not prescribing drugs. He's never met a supplement or alternative approach he likes.

Recently our neurologist signed us up for a trial using a watch that tracks dyskinesia and other PD symptoms. Youtell the researchers when you take you your PD medications during the day and they input this data before they send the watch to you. You acknowledge the times every day when you take the medication, then you send the watch back after a week and they download the data. Our data showed a smooth sine wave with the same up and down pattern against a baseline. It was the same all day, every day. In other words, no dyskinesia, no slowness, no aberration whatsoever. The person I'm a caretaker for was diagnosed in 2011 and has never taken Sinemet, only Mucuna and Tyrosine. It's hard to get this kind of result long term with Sinemet only.

Lastly I'll say this: Nan is my hero! I really think the young blood plasma transfusion trial she participated in at Standford and the new trials underway hold great promise.

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Jean Mellano avatar

Jean Mellano

Hi jack. Thanks much for you comments. The Hinz Mucuna protocol left a bad taste in my mouth (no pun intended) and a huge hole in my wallet, hence I am hesitant to try it again. I also experienced very bad nausea and the amount I had too take would no longer dissolve in my juice or smoothie and I gagged every time I tried to get it down. :-(. Since I wrote this article, sinemet has been pulled off the market by Merck and I am on the generic which I believe is causing dyskinesia. I recently returned from PD summer school with dr. Laurie mischley and I am going with her recommendations for now to see where it leads me. This disease is relentless and a formidable adversary.

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Jack Aubrey avatar

Jack Aubrey

Hey Jean, haven’t heard of Dr. Mischley. Found the link though, and we are looking into her program for next year maybe. The NDs that come out of Bastyr University are some of the best.

Yeah, I should be careful not to suggest people do one thing or another. Having said this, we have about as much empirical experience with PD as anyone you can think of, and we have found - this is where I agree with Kurtis - that some sort of levadopa therapy is eventually necessary.

It’s unfortunate you had nausea. Mucuna is an alternative to Sinemet. Unlike Sinemet (which has been available as a generic for many years now), Mucuna does not have carbidopa, which means the levodopa in it has the potential to cause nausea. Hinz uses Tyrosine and other amino acids to resolve this. When you are taking too much Mucuna that’s typically when nausea occurs. We never experienced that. Also, we do not use any of his other supplements and we don’t use his Mucuna which. as u said, breaks the bank.

You really have to work at any protocol involving Mucuna. Eventually one arrives at a place where smaller and smaller amounts of Mucuna and Tyrosine are necessary for symptom management and where possibly you can reduce the amounts of powder you are taking which is where we are. As the neurologist Maldanado states, combination therapy with Sinemet and Mucuna has also been proven to be effective.

Can you please let us know what you learned at the summer school that helped you?

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Jean Mellano avatar

Jean Mellano

jack thank you again for your thoughtful response. this disease is quite the conundrum in figuring out what works as some therapies (both natural and drugs) work for some and not for others. here is a link to my summary og pd summer school:
https://parkinsonsnewstoday.com/2019/09/03/top-six-parkinsons-summer-school/

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Jack Aubrey avatar

Jack Aubrey

Wow... great summary Jean! Hope everyone checks out your link. Come to think of it, our neurologist suggested we participate in Dr. Mischley’s study. I misplaced the link he sent us previously, so had forgotten her name.

One last thing I forgot to tell you is our neurologist recommended the person I take care of do a test for SIBO(Small Intestinal Bacterial Overgrowth) and the result was positive. An antibiotic called Xyflaxin(luckily we got two weeks of free samples because this stuff is super expensive) was prescribed and we observe this has really helped with digestive/absorption issues and increased the effectiveness of the levadopa/Mucuna therapy we’re doing. This is in line with what several people here have commented on regarding PD and other diseases starting in the gut.

You’ve got a great thread going here Jean!

Irene avatar

Irene

Hi Jack, Im not sure if you see this message but I was wondering if you could share more about the protocol you are using for Parkinsons? Sounds like you know a lot and you have tried several things? Have you found natural ways effective and if so could you share more about it or some sources to learn more? You mentioned amino acids and mucuna. Thank you so much :) -irene

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Jean Mellano avatar

Jean Mellano

hi jack, thnx for your comments. i was tested for SIBO and it was negative. i was almost hoping it would be positive. if so, there would be a prescribed course of action with some hope to possibly alleviate some symptoms

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Hendrik avatar

Hendrik

Hi Jean,
My dad also was tested for SIBO and came back negative. However went to see a gut specialist that prescribed flagyl after being forced. Anyway after he started taking it we saw immediate improvement to the point where he can eat normally. I would recommend it even if the SIBO tests comes back negative.

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Jean Mellano avatar

Jean Mellano

Hendrik
thanks for this info.
1. did you dad suffer any side effects from flagyl?
2. How quickly did he see relief from his PD symptoms after taking Flagyl?
3. What were his symptoms?
4. did he and does he still take PD meds? which ones?

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Hendrik avatar

Hendrik

Hi Jean,

1.) None but I believe it is because he was going thru such a bad time with the pain and abdominal discomfort that he couldn't feel anything else. He started getting the same symptoms again but the pharmicist gave my mother other pills that is similar which is a big mistake. NEVER take those similar cheaper ones they have the same ingredients but the quality is terrible. When my dad used them he had stomach pain and sensitivity. It is a very strong non natural antibiotic.
2.) He saw relief the next day and could start drinking water and eating food. He was at a parkinsons clinic for 9 days and the nurses said they never saw gut issues like this but the specialist and DR kept insisting it is from parkinsons and stated that the test results showed no bacterial overgrowth. It was actually a ex naturopath that told me to check for bacteria even if it isn't showing up.
3.) He had severe bloating and abdominal pain when eating or drinking anything. It came to the point where he was rapidly losing weight and didn't want to drink water even.
4.) He takes madopar and movicol daily. Movicol works but he is complaining that its making his bowls lazy and he has diarhea like stools because of it.

The bad news is it is starting to slowly creep back and becoming an issue again.
I'm going to try some natural treatment to see if it works because the medication is starting to lose its effectiveness after less than a year. I am doing constant research myself because we want to use natural non pharma treatment.

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Jean Mellano avatar

Jean Mellano

hendrik
i am so sorry to hear of his continued struggles. it sounds like he was given generics. I do believe they are not as good as since i have been on generic sinemet, my symptoms seem to have gotten worse . i attended PD summer school in august which was created by naturopath Dr. Laurie Mischley. here is my summary: https://parkinsonsnewstoday.com/2019/09/03/top-six-parkinsons-summer-school/ dr. mischley is in washington state and i believe she practices telemedicine for new out of state patients. she is well versed in PD and has a naturopath in her practice, Dr. Evans, who specializes in gut/PD issues.

Hendrik avatar

Hendrik

I guess it is to be expected in todays life where everything is become poison in some form. The water has uncommon chemicals in, the air is polluted, the foods have hormones, additives, preservatives and pesticides in. And to top it off the medical institutions only want to cure the symptoms and alienate anything natural. I feel sorry for kids today because they are bombarded with these things now.
Anyway I read that link thanks. I also came across this article:
https://www.scientificamerican.com/article/does-parkinsons-begin-in-the-gut/

It confirms my suspicion that parkinsons might originate from the gut. It would not suprise me if it is caused by something like diverticulitis, bad bacteria, fungus, parasites or some form of toxin. What I also noticed in my dad is if he starts to have stomach pain his tremors increases afterwards.

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Jean Mellano avatar

Jean Mellano

Hendrik
I agree, we are faced with so many toxic substances today. I never had or have constipation issues. PD is so frustrating since symptoms vary from individual to individual and what therapy/med works for one may not work for others. I doubt there will be a cure in my lifetime (I am 65) but I will be donating my brain to PD research with the hope that it might help.

https://parkinsonsnewstoday.com/2018/11/13/parkinsons-disease-arranging-for-brain-donation/

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Donna avatar

Donna

I am wondering if anyone with PD is suffering from severe muscle cramping and spasms. These are my worst symptoms. It actually makes it impossible to sit or lay down for sometimes 8 hours at a time. I'm on Sinemet which has given me tremors.

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Jean Mellano avatar

Jean Mellano

Hi donna, you might want to post this as a topic in our pd symptoms forum

https://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-disease-symptoms/

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Anthony Tricoli avatar

Anthony Tricoli

Have you tried Stem Cells? I know it may seem like a shot in the dark, but everything is a shot in the dark for us.

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Jean Mellano avatar

Jean Mellano

Anthony, thnx for the suggestion. I have not tried stem cells. From what I have read and heard, it is not ready for prime time yet. Do you have any references or anecdotal stories about this therapy? You r so right, everything is a shot in th e dark for us and what works for one may not work for another.

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Nancy Thompson avatar

Nancy Thompson

Sorry for being a negative Nancy, but one thing I rarely hear discussed is how much it costs for all the recommended supplements and alternative treatments. I'm on medicare and live on Social Security. As for taking Co-Q 10 in the effective dosage -- there goes my entire supplement budget. Stem cell treatments? Are you $$$ kidding me? Parkinson's summer camp ... didn't that cost about $5,000.00? I'd love to know how other people with limited incomes are managing their Parkinson's. I feel like I'm in a Catch-22: if I don't get this disease under control I can't work. And if I can't work, I can't pay for the alternative treatments which are the hope to which I cling. Any suggestions would be greatly appreciated. I am so thankful to everyone who shared their Parkinson's experience.

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Jean Mellano avatar

Jean Mellano

Nancy, I am so sorry to hear about your struggles, Indeed, alternative treatments are very expensive and PD summer school was not cheap. I am using my retirement savings to fund my supplements. I am selective as to what I will try as there are so many 'miracle cures'. My mom always said, if you have your health you can do almost anything. My dad always said save, save, save for your retirement. my parents were wise and I am glad I listened to them. My suggestion for you would be educate yourself as much as you can about PD using online resources such as parkinsonsnewstoday.com plus facebook groups devoted to parkinsons. There is a wealth of information online and many people with pd share their experiences such that we all can learn.

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kathleen provorse avatar

kathleen provorse

how to help me with my husbands parkinsons

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Maria Schneider avatar

Maria Schneider

There are a few things that have helped me and my Dad--limit calcium. Check all your supplements and avoid any that contain calcium. Avoid tums--it's calcium. When eating cheeses and dairy, combine with spinach or other veggies that slow or inhibit calcium update. Eat lots of spinach and sweet potatoes. Both of these seems to help to an extent with various symptoms. Fish is also very good and seems to help. Ask your doctor about hormone replacement. It can help quite a bit with moods and with slowing down the symptoms. Look into creatine--not as a cure, but to slow muscle weakness. LOW DOSES. It will either help or not. I personally use half a gram daily before stretching or light weight lifting. Dad uses a whole gram daily before a walk. The one thing that seems to help us the most is limiting calcium and if you are on well water, you are probably getting calcium there too. Just for reference, we do eat meat, supplement with cucubrain (a type of curcumin) and quercetin. Licorice (the root/herb) is a good supplement for women for hormones and Panex Gingseng is a good supplement for men for hormones.

Maria
www.BearMountainBooks.com

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Jean Mellano avatar

Jean Mellano

Hi Maria, thanks for this information. I am on a plant based diet, so no dairy for me. I do like sweet potatoes and need to eat more of them. I have to get back to my fish oil supplement. HRT I am not too crazy about. Not sue about calcium as I am sure Doc. will want me to take some as I just had a DEXA scan. In 2012 (my last DEXA scan) I had osteopenia. Again, thank yo Maria for your input. This is good info..

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Juleene avatar

Juleene

Hi there, I help care for my grandpa who has had a Parkinson's diagnosis for several years now but in the last two years he has drastically declined. He sees a neurologist that gives absolutely NO ANSWERS! I do research all the time for things my grandpa could do to help slow the progression but it seems that big pharma has been great at brainwashing the masses when it comes to their healthcare and treatment options. While there are no cures, like the author had mentioned there is an inflammatory response inside a PD brain, gut and body, which diet, probiotics and supplementation along with medication can help, in fact when I had my grandpa taking a liquid multivitamin called "Nature Plus: Source of Life, Liquid" his weakened voice got stronger and his mind was clearer, he also had more energy. However, when we told his neurologist about this improvement this neurologist just chalks it all up to, "there is no evidence that inflammation has any factor in PD." He needs to go back to school because inflammation is at the foundation of all disease! Needless to say my grandpa quit taking those vitamins and now I can't get him to take anything or change his diet! Trial and error is where we get our evidence and our success. Parkinson's has been a known disease since the 1800's and we are closer to curing HIV than we are a cure for PD! It makes me sick to watch my grandpa go to a place where he is just devastated because he can no longer provide for my grandma the way he used to. It absolutely breaks my heart that this doctor has no understanding of what everyone else seems to know but him!

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