I participated in Laurie Mischley's PD Summer School this month, and I'm so glad I did. I learned a lot and came away with lots of good tweaks to my program (diet. exercise. supplements, etc.), new friends and much hope.
For those who don't know, Laurie is a naturopath who has dedicated the last 20 years or so to treating PD patients and to PD research. She does nothing else. Her CAM (Complementary and Alternative Medicine) Care study has analyzed many lifestyle factors of 2000+ patients, to determine which help slow progression and which speed it up. Based on this along with individual labs and other indicators, she recommends diet, exercise, supplement and other lifestyle and medical interventions. She is NOT anti-pharmaceutical. She is just clear that while meds can help symptoms and thus quality of life, they will not slow or stop progression, much less reverse disease.
She believes that PD IS reversible, and her work is dedicated to figuring out how to do that, and in the meantime, providing the best quality of life and hope possible to PD patients.
She sees patients both in person and through Skype. There is a wait of several months to get a first appointment with her, but after that it's easier to set up ongoing appointments.
The summer school is a yearly event, this was the third one. It's not cheap, around $4500 for the week plus housing ($75 per night for on campus housing), and transportation, but this includes around $2-2.5K of laboratory tests and all meals. It includes lectures on the science of PD, treatments,, diet, exercise, environmental toxins, and many more, as well as opportunities for daily exercise, and development of a personal plan based on each person's needs, abilities and labs.
The following article was written by another participant, and I think summarizes the experience well. As I go through my notes, if I come across any other tidbits that I think would be useful, I'll post them here.
Thank you. Interesting and helpful post and link to the summary. Let's hope progress in conventional medicine can start to invalidate the statement that it is unable to affect the progress of the disease. (Presumably Laurie would say rasagiline is the first, somewhat questionable, step on that path). But there are hopefully better options being tested. Turn over enough stones...
Meantime alternative treatment strategies are core. I was a bit disappointed there was nothing about my theme song, the microbiome, given it is progressively demonstrating a key role
Current research regarding the gut’s role in causing/triggering PD was touched on. Increasing evidence that synucleiopathy spreads from gut to brain via vagus nerve.
Non motor gut symptoms are among the most problematic: constipation, weight loss, nausea, etc. Low stomach acid is common in PD.
Many studies link dysbiosis (altered gut flora) and PD. Plant based diet is best for microbiome. Eat plant variety and lots of fiber to increase microbiome diversity and health. Eat the rainbow! Eat a LOT of vegetables, fruits and fiber!
People with PD low in bifidobacterium at time of diagnosis progress faster. Bifidobacterium and lactobacillis can improve PD symptoms. Patients with high levels of enterobacteriaceae have more gait difficulty. This bacterium produces lipopolysaccharides (LPS) which are inflammatory and produce inflammatory cytokines which can disrupt BBB and increase A-Syn accumulation. Some studies have shown that PD patients have elevated LPS in their blood, implying leaky gut. A June 2019 study concluded that supplementing with l. salivarius and l. acidophilus reduced pro-inflammatory and increased anti-inflammatory cytokines.
Short chain fatty acids (SCFA) protect against leaky gut, promote BBB integrity and help with constipation. They are produced by gut microbes, by fermenting non digestible fiber. Increasing fiber will increase SCFA’s. Also good to supplement with butyrate, which is low in PD patients. Meat based diet causes lower levels of butyrate.
Low FODMAP diet may adversely affect microbiome.
Hormones: The gut produces melatonin, 400 times more than pineal gland. Regulates gut motility and reduces gut inflammation. Ghrelin stimulates appetite and is low in people with PD. Cannabis, ginger and coriander can increase Ghrelin. Melatonin is best absorbed in sublingual or liquid form.
We probably can’t get over there for the next few years as the kids are too young to leave but it might be something we look at in a few years time. Thanks.
Thank you for sharing what you’ve learned with us! I would be interested in what her thoughts were on supplements? What are her top choices and does she have any thoughts on B1?
Laurie recommends supplements based on individual lab work. But there are a few that in her study show up in the slowing progression column.
Glutathione is probably #1. Intranasal has the most impact but is expensive. Oral is also good, but not as effective. Glutathone has been shown to be deficient in PD, 40% early on. PD patients have shown significan motor improvement using intranasal glutathione.
CoQ10, curcumin and fish oil all show up in the slowing progression column. High DHA fish oil can reduce dyskinesia after 4 weeks. Many PD patients are deficient in CoQ10.
Sleep is one of the most important factors to slowing progression. Metabolic waste is cleared during sleep. Melatonin helps sleep but generally at least 9-12 mgs is needed. sublingual and liquid forms are better absorbed. If you don't have trouble falling asleep but wake during the night, take it then. First few days can cause morning grogginess and/or vivid drreams. Pistachios have a lot of melatonin!
Cannabis is even better for sleep.
Many PD patients are low in lithium. 5 mg lithium orotate is recommended. Larger doses can help with dystonia.
If your homocysteine is high (an inflammatory marker) there is a particular supplement she recommends, Pure Homocysteine Factors. L-Dopa elevates homocysteine.
Supplementing with CDP Choline can improve C/L efficacy by up to 50%.
Taking vitamin C or another acid like lemon juice with C/L can also improve efficacy. In addition, VC is low in many people with PD so that's a good one to take.
Inosine might be neuroprotective but can increase uric acid causing kidney damage and gout. A study is underway.
Many supplement labels don't match actual contents. Important to use quality brands, even though it's more expensive. Avoid buying at sites like Amazon -- you may get an expired product, one that has been exposed to heat or a knock-off.
Supplemental iron contributes to faster progression.
My husband has been her patient for a few months. Everything you wrote about vitamins and supplements has been recommended to him, too. I have been purchasing most of his vitamins/supplements/minerals from Amazon. I read all the bottles checking for expiration date, and have had no problems so far. I always buy quality products, most of them are PURE brand name. Mishandled products can happen anywhere, not just Amazon. It is also more convenient to have one account for all these supplements I buy and the less financial information I or anyone provides on the net the more secure!
Last fish oil I bought was a good one on her recommendation, but when husband reached a little lower than half full bottle, the fish oil looked weird. I suspect it oxidized. On the other hand, Cleveland Clinic Functional Medicine doctor (Dr. Mark Hayman is the head of FM) had prescribed METAGENICS capsules. I had to throw away the fish oil and have my husband continue METAGENICS. I use a pin to punch the capsule for easier absorption.
I did talk to her about B1. She said that she heard of "A Neurologist in Italy using it on his patients," but she didn't appear willing to elaborate as she hasn't seen any clinical trials, to paraphrase as it's been a while and can't write verbatim what she said.
She also recommends Rasagiline to her patients and is a proponent of Sinemet.
Her study of 2000+ patients over several years shows patients using rasagiline progressing more slowly. Her experience is that people in general have better symptom control with sinemet than with mucuna, which in turn helps exercise (essential for slowing progression) and lowers the stress of the symptoms themselves. She isn't against mucuna however, and will support patients who want to go that route. No absolute here.
If I remember correctly (and this is not from Dr. Mischley), L-Dope itself requires B6 to be metabolized. So the higher doses of mucuna that one would need to take without carbidopa to get symptomatic relief, depletes B6 as does the carbidopa in Sinemet. Please correct me if I'm wrong on this. If it is so, it would bring into question Marty Hinz' rationale for using mucuna rather than sinemet.
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