Combining Different Ideas About PD Can Be... - Cure Parkinson's

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Combining Different Ideas About PD Can Be Enlightening

chartist profile image
chartist

After reading park_bear's very interesting post regarding Permethrin as a potential cause of PD, it got me to thinking! Here is a link to his post :

healthunlocked.com/cure-par...

Here is a link to the FMT post that showed significant improvement in PwP in just 12 weeks:

healthunlocked.com/cure-par...

Since the post about Fecal Microbiome Transplant (FMT) just went up also, it has renewed my interest in the gut microbiome and with park_bear's post and the FMT post both fresh in my mind, the recurring question came to mind,

"What if the common denominator in Parkinson's Disease really is a negatively altered gut microbiota?"

With that thought in mind, I searched for any studies that might show if Permethrin might have any ability at all to alter the gut microbiome toward more pathogenic bacteria. I realized this was an unlikely long shot, but I had to look. As expected, there were only a couple of rat studies. So I will get right to the point.

Interestingly, one of the studies came to this conclusion :

>>> ' In summary, exposure to PERMETHRIN could affect the fecal microbiota and could be a critical factor in contributing to diseases. ' <<<

pubmed.ncbi.nlm.nih.gov/268...

In the other study the rats got Permethrin or they got Permethrin plus a substance called "Electrolyzed Reduced Water" (ERW) which has antioxidant qualities. Permethrin resulted in increased gut permeability, increased inflammatory mediators, hepatic inflammation, increased pathogenic bacteria and negatively altered microbiota. The Permethrin + ERW group faired better and had more beneficial bacteria that produced more butyrate and less pathogenic bacteria.

pubmed.ncbi.nlm.nih.gov/316...

This to me suggests that fixing the gut microbiota through FMT or other methods which has been discussed in the mannitol post at length, is a needed starting point and based on the FMT study results can potentially ameliorate the Permethrin damage to the gut microbiota. Here is a link to the Mannitol post that discusses different ways of altering the gut biome including FMT.

healthunlocked.com/cure-par...

This article about pesticides and how they can affect the gut microbiota was also interesting :

beyondpesticides.org/dailyn...

Lastly, it appears that the gut microbiota definitely plays a very major role in PD and manipulating the gut microbiota toward less pathogenic bacteria and more healthy bacteria resulting in reduction of motor and non motor symptoms, elimination of Small Intestinal Bacterial Overgrowth (SIBO), which apparently is common in PwP as well as elimination of constipation. It's just an opinion, but it may be worthwhile concentrating our efforts on repairing the broken gut microbiota through whatever means we can find that are not dangerous or wait until FMT is available to the masses.

On a related note regarding wriga's broccoli seed protocol experiment in progress, it is worth noting that broccoli has positive effects on the gut microbiota as does melatonin! Mannitol, while not noted for making major changes in the gut microbiota, does offer benefit via increased butyrate production when there are still enough of the butyrate producing bacteria left in the PD gut for the mannitol to interact with and butyrate is known to have gut reparative effects. Berberine interacts with the gut biome to produce more levodopa which then goes to the brain to be converted to dopamine. Cinnamon also has positive effects on the gut microbiota. I could go on, but I think you have the general idea. It's amazing how so many of the beneficial things discussed on this forum have positive effects on the gut microbiota or is it just coincidence??? The alternative seems to be just continue treating symptoms as they continue to increase while doing little to nothing to try and repair one important underlying problem.

Art

81 Replies

I wonder if adding resistant starch to our diet while taking Mannitol would help.

chartist profile image
chartist in reply to parkie13

Hi Mary,

It might because both mannitol and resistant starch can increase butyrate production which is antiinflammatory as well as having the ability to repair a leaky gut or gut permeability which is inflammatory. You can see where mannitol has already shown benefit in some PwPs. In my experimenting with resistant starch, what I found is that it caused a tremendous amount of gas, as in I couldn't go out in public at all. Mannitol is also noted for increased flatulence, though not quite to the extent of resistant starch.

Gio and Kia both reported benefit using a probiotic and I think Gio tried both mannitol and xylitol before deciding that xylitol worked out better for him. Xylitol is another sugar alcohol like mannitol and is noted as a butyrate producer also, if there is enough butyrate producing bacteria present in the gut.

Art

parkie13 profile image
parkie13 in reply to chartist

What kind of resistant starch did you use and how much?

chartist profile image
chartist in reply to parkie13

It's been awhile, Mary, but I used potato resistant starch as was discussed all over the web at the time years ago. The dose, I'm not sure about any more because in my mind, I had already decided I would not be using it again. I think it was around 12 to 15 grams/day.

Art

parkie13 profile image
parkie13 in reply to chartist

Thanks Art, I missed that completely, must have been before I had Parkinson's. Aside from a green banana or cold potatoes, I don't think I'm going to pursue it. Mary

chartist profile image
chartist in reply to parkie13

Mary,

I remember there was a group of researchers who were promoting it at the time and they had a blog where you could exchange notes with them. They were mainly who I followed on the topic of RS and I remember them talking about the importance of the RS being cold when ingested as opposed to warm or hot. Based on that, they felt that potato salad would be a good way to get some RS, but I don't know if they were correct.

Art

chartist profile image
chartist in reply to parkie13

Mary,

If I remember correctly, Gio used refrigerated rice to good effect and it is also a resistant starch, so that is another option to consider as a means to obtain the benefits of RS.

Art

parkie13 profile image
parkie13 in reply to chartist

I don't think that you get bad gas from it either.

chartist profile image
chartist in reply to parkie13

I wasn't saying that everyone gets severe gas from RS, Mary, just that I did at the dosage I was taking of 12 to 15 grams per day divided into two doses. People report varying degrees of gas with Mannitol also and in some cases so bad that mannitol is no longer and option for them, while others report mild to moderate gas that sometimes goes away with time and yet others report no flatulence. I had the same issue with xylitol at 10 to 15 gm/day in divided doses, but it was mild and did reduce with the passage of time.

This is why the producer of Syncolein added alpha galactosidase, the active component in Beano, to their mannitol, to reduce gas because it is common, but not everybody gets it.

Here is a link to an article that describes this issue as a side effect of RS :

medicalnewstoday.com/articl...

The problem for me was that it was severe and didn't relent with the passage of time. I wanted it to work so that I could obtain the potential health benefits, but after two months or more, I had to throw in the towel on RS.

It's the same way with many things. Take melatonin, I seem to be able to go as high of a dose as I want with little to no problems while others can't even function the next day after taking 10 mg the night before. In park_bear's case, he said it gave him explosive diarrhea. We're all different Mary and it takes trial and error to figure out what works best for us.

Art

parkie13 profile image
parkie13 in reply to chartist

Yes, so very true. Thank you for your answer. Mary

rescuema profile image
rescuema in reply to parkie13

In my opinion, organic sprouted whole grains are the best for butyrate/SCFA. Try barley, sorghum, brown basmati rice, farro, beans, etc. Use brown rice as a staple safer starch and rotate the others in portions. See the below post for more detail. healthunlocked.com/cure-par...

parkie13 profile image
parkie13 in reply to rescuema

Thank you. Mary

LAJ12345 profile image
LAJ12345 in reply to parkie13

Do you eat these raw?

Very interesting, Art!

chartist profile image
chartist in reply to park_bear

park_bear,

I'm reading more about the gut biome and just finished reading an article that suggests that manipulating the gut biome away from pathogenic disease causing bacteria does help ameliorate psoriasis too, so I am highly motivated to find the best current ways to alter the gut biome away from pathogenic bacteria and more toward health promoting bacteria! It seems that a twisted gut microbiota is present in many, many disease states.

When looking at the FMT study results, it was clear that the major changes that took place in that study were mainly limited to a handful of specific bacterial families. I find it hard to believe that current science and scientists can't use and replicate these results using non FMT methods. Mainly through creation of specific probiotic combinations that are now known to shift the gut microbiota toward more healthy gut bacteria and less pathogenic disease producing bacteria.

Art

"It's amazing how so many of the beneficial things discussed on this forum have positive effects on the gut microbiota or is it just coincidence???"

Nope not a coincidence, and it also includes Red Light.

chartist profile image
chartist in reply to rescuema

Yes, it seems if you don't first repair the broken gut biome in PwP, no matter what you use to try and make PD better, the pathogenic bacteria will assure that the disease will persist and progress. In the FMT study, they were able to follow the gut microbiome transformation from over abundance of pathogenic bacteria to a more healthy balance and greater diversity which resulted in elimination of chronic constipation, elimination of Small Intestinal Bacterial Overgrowth (SIBO), decreased non motor symptoms and decreased motor symptoms over a 12 week period.

Art

rescuema profile image
rescuema in reply to chartist

It's a similar concept to why certain antibiotics treatments have positive reactions in certain PWP in studies, although the benefits are limited and won't last. One must modify the diet and strive to persistently shift the microbiome ratio and do various synergistic lifestyle changes such as overhauling food intake, light therapy (sun, red light, outdoor exercise), avoid glyphosate (eat organic), address toxins, etc. This is just a part of the variables still but a BIG one.

Despe profile image
Despe in reply to chartist

Art,

If a PWP does not experience constipation, does that mean that there is no pathogenic bacteria? My husband never had constipation and he still doesn't, going into fourth year after diagnosis. Could it be my Mediterranean cooking? :)

chartist profile image
chartist in reply to Despe

Despe,

There is always pathogenic bacteria in the human gut, but when it becomes unbalanced in favor of these specific bacterial families and specific members of these families, diseases can develop. Constipation is only one symptom of PD and not all PwP have constipation. In the FMT study, they used 11 PwP with constipation and SIBO and I suspect there was a reason why, but not all PwP have the same symptoms of which constipation and tremor would be two obvious ones.

Art

SCD and the microbiome: pubmed.ncbi.nlm.nih.gov/296...

Zella23 profile image
Zella23 in reply to rescuema

Yes interesting isn’t it. My husband has been using resistant starch including, inulin, oat grain, flaxseeds and cinnamon to name a few. Constipation was never an issue but seemed to appear about six months ago. He eats loads of raw fruits and vegetables, Mediterranean type diet and it has definitely been a big help researching and using these foods. Probably his red light helps too.

chartist profile image
chartist in reply to Zella23

Is he using the crown for the red light PBM or a pad or ?

Some have found help for constipation with mannitol or B1 if he hasn't already tried those.

Art

Zella23 profile image
Zella23 in reply to chartist

He has the Men’s shed red light hat, does take B1 and has for 2 years so we couldn’t understand the sudden difficulty with constipation, but it seems to be much improved. Something in the research on Mannitol put me off it so never tried it but you never know. Thanks for your reply.

One of the common models for PD is the Rotenone model. Rotenone is a pesticide. It is said that Rotenone causes oxidative damage and dopaminergic neuronal loss. This is true, however, in the following newer study link it is shown that Rotenone also resulted in a significant change in gut microbiota composition and an increase in intestinal permeability in conventionally raised mice.

tandfonline.com/doi/full/10....

MPTP also causes microbiota changes as does 6-hydroxydopamine (6 -OHDA), both models for PD. Association does not equal cause, but there seems to be a pattern forming here. These models are used to test different substances for efficacy in ameliorating PD symptoms. Given the recent understanding that these models also affect the gut microbiota, it seems logical to work from the gut microbiome angle as well? Will manipulating the gut microbiome reverse the effects caused by these models?

Art

I like your gist, agree with it in hope, but not in proof...but some of your judgments seem a bit prematurely rosy.

"Definitely" is not true unless demonstrated. "Apparently" as you also phrase, does not make it a fact...apparently means "seems like might to me given the limit of what I think I know."

The end mechanism we are talking of is production of certain forms of radicals such as superoxide radicals that punch holes in mitochondria and cell machinery dna and that particularly like hitting in dopamine producing cells or for whom dopamine producing cells are particularly vulnerable...at the site (which we know because DaT scan is the picture of it). That, not necessarily gut repair or sealing generally, all quite upstream and potentially many intervening reaction steps away, is your bar for saying words like "definitely" and for saying "apparently" actually means "definitely." Vagus nerve transport is definitely a fun idea and very creative and intuitive. Until then, you are risking behaving like a Pied Piper of Hamlin.

chartist profile image
chartist in reply to MarionP

Are you talking to me? If you are, can you point to where you are referring?

Art

MarionP profile image
MarionP in reply to chartist

I am. Look at your initial post for the specific words I responded to.

chartist profile image
chartist in reply to MarionP

I used the word "definitely " in reference to the FMT study in which manipulation of the gut microbiota by the research team "definitely" saw a major improvement in PD symptoms in terms of elimination of constipation, elimination of SIBO, reduction of non motor symptoms and reduction of motor symptoms in 12 weeks. Here is the exact sentence :

>>>Lastly, it appears that the gut microbiota definitely plays a very major role in PD and manipulating the gut microbiota toward less pathogenic bacteria and more healthy bacteria resulting in reduction of motor and non motor symptoms, elimination of Small Intestinal Bacterial Overgrowth (SIBO), which apparently is common in PwP as well as elimination of constipation. <<<

That is what the FMT study showed as their results and I consider that as "proof" that required no link as I had already linked to it higher up in the post.

Regarding the use of the word "apparently" to describe the frequency of SIBO in PwP, it was based on this article :

gutpathogens.biomedcentral.....

I didn't think it required a link that says that SIBO is "apparently or definitely" present in roughly 25% to 50% of PwP depending on the report you are looking at, but I imagine I could have added that "fact" in.

Marion, I am not writing a scientific paper, but I am trying to convey a message in a way that the forum members will be willing to read to the end. That isn't being prematurely rosy, that is stating facts.

Art

Interesting, thank you. Intriguing that berberine, cinnamon and broccoli may also help with regaining blood sugar control (possibly butyrate and melatonin too).

chartist profile image
chartist in reply to bookish

You're welcome.

Well, melatonin might be useful in ameliorating damage caused by hyperglycemia at a minimum, but is useful in T2DM in general, while the others work to control it. Notice the dosing of 250 mg/day in patients in two of the effective studies.

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/337...

pubmed.ncbi.nlm.nih.gov/334...

ncbi.nlm.nih.gov/pmc/articl...

This is what happens when the dose of melatonin is too low:

ncbi.nlm.nih.gov/pmc/articl...

Art

Hi Art,No its not really that amazing but it is kind of miraculous that it is all lining up this way...don"t you think?

Park is on it and Im going to back him up with the funding side so to speak.. who knows? maybe we can find our way out of this mess..its worth a try is all I know...

best,

Jim

Hi Jim,

What do you feel is lining up ? It seems there are many things going on on this forum on any given week. Right now I see wriga's ongoing broccoli seed experiment and discussion, the red light therapy discussions, the FMT study results and related discussions, butyrate and SCFAs, the Permethrin/PD discussion, the DBS nightmare story, melatonin discussions, the mannitol discussion and other things that I probably haven't picked up on yet. There seems to be a steady flow of topics most of the time here, so can you be more specific?

Having been here for a moment, I can say that this forum is different from others I have seen in that there is an unusual number of members here who are very proactive and have essentially decided that they are going to do everything in their power to fight this disease as opposed to just doing what their neurologist/MDS tells them to and following that path only. Most importantly they are willing to share what they are doing aside from PD meds that is helping them. It is a great forum!

Art

JBOVERT profile image
JBOVERT in reply to chartist

YES ART I totally agree I you and I hav e say it is my sole source for my particular malady which is psp. there is a litany of things to try though and right now I am trying to figure out the correct dosage for hdt therapy...that is my current challenge. beyond that I am looking forward to trying out the red hat and then there is the sulforadine (sic) with regard to the broccoli seeds that is supposed to be a real hit for anyone who can achieve that 70 degree '

temp for the sprouts so as to release the sulforadene (kind of like the kraken:) but I'm just trying to get the equipment that is needed to facilitate the completion of this particular endeavor....but none of these projects would be possible without this forum! So yes it is the

a great forum !

chartist profile image
chartist in reply to JBOVERT

Jim,

Where are you in your HDT journey in terms of dosing and any possible benefits?

PSP seems to have elevated lipid peroxidation and MDA levels and mitochondrial dysfunction for which melatonin has shown significant activity against all three. Melatonin is actually produced in the mitochondria and can rapidly control oxidative stress because of its very close proximity. There is little delay as may not be the case with outside sources of antioxidants in arriving to the scene in time to prevent mitochondrial damage. Melatonin may be the first responder and a quick response is needed in order to continually protect the mitochondria before oxidative stress can cause too much damage. The mitochondria also have the ability to draw melatonin into the mitochondria if needed, but that assumes there is melatonin available to be drawn in. Unfortunately melatonin production declines sharply with age as do levels in the body. Although melatonin and sulforaphane do very similar things, I suspect the two together are better than either one alone.

The video the other day about PBM was a little confusing to me because I was expecting it to be about LED red light, but it seemed to be more about laser, which is much more powerful and more expensive than LED???

Art

JBOVERT profile image
JBOVERT in reply to chartist

HI ARTI am taking a break from it and trying to get the dosing into a better prospective with regard to my weight; RIGHT NOW weigh 222 and I started off at 4 grams per day well that just made me worse..so I thought that I was taking Too much ...so I waited for 5 days and started taking 2000mg to start off with and another 2000 mg after lunch;

so that is even worse affect on me so now I am taking another 5 days and going to come back into it starting off dose at 3-4 grams and the same after lunch...what are your thought? beyond that I am getting ready to go to the big island on the7th and I was thinking go going to university of Florida they have a dept up there that specializes in psp so that is where im hesding...and while im there maybe I can fnd out if I have that worm in my gut :) what a world

chartist profile image
chartist in reply to JBOVERT

Jim,

Generally, when Dr. Costantini found a negative response to the dose he was recommending, he halved the dose after a break, especially if the negative symptom effects came on quickly after starting his recommended dose. The other thing is that few members use 4 grams effectively and few members use 25 mg effectively, but that is the dose range that has shown benefit on this forum. I wrote about it here :

healthunlocked.com/cure-par...

What worm are you referring to?

Art

JBOVERT profile image
JBOVERT in reply to chartist

you commented on it: C.Elegans

LAJ12345 profile image
LAJ12345 in reply to JBOVERT

My husband took 3 g for a while then 2 g and he has been taking b1 for 2 years now and is now down to 750 mg as it seems to need to be reduced over time. Perhaps your start amount is less than 4 if you absorb it better.

If he starts feeling overly anxious I drop it again a little. Occasionally I drop it too soon and he says he feels worse so I put it back at the previous dose, but having said that so many things affect how he is feeling including weather it is not an exact science.

chartist profile image
chartist in reply to JBOVERT

The worm is used as a type of model for PD, that is why the article surprised me and as it turned out the article was wrong. The worm is not the problem so don't waste your time checking for it!!! They referred to the worm as a bacteria! That was one of those articles that was written for the purpose of writing and not to inform.

Art

JBOVERT profile image
JBOVERT in reply to chartist

Hi Art, So tell me what I need to know regarding my gut and whether or not its leaking (How to tell) and then what I can do about it... after that I am still going touniversity of Florida to check out the latest there on PSP and establish a connection'

with this doctor I had been talking io earlier....what does FMT stand for?

chartist profile image
chartist in reply to JBOVERT

Jim,

Use this link or scroll to my last reply at the bottom of this thread. This is information that every PwP should currently be aware of :

healthunlocked.com/cure-par...

Art

Art :You seem very knowledgable about this subject wondering what Is your background?

chartist profile image
chartist in reply to eaglet

eaglet,

My background is that I read a lot . I wrote about FMT a little bit 3 years ago. Here is a link to what I wrote, but you will also have to read the replies to the post because that is how I updated the post as new studies came out or I found them.

healthunlocked.com/cure-par...

I have been waiting for FMT results in PwP since then and this recent release of the data for the FMT/PwP study is one, of I hope, many more to come for PD and other diseases that may be affected by a perturbed gut microbiota. They have done other FMT studies and it is in use in some places already, but I would say overall it is in its infancy and growing as interest in the gut microbiome and disease continues to expand as illustrated by this graph :

pubmed.ncbi.nlm.nih.gov/?te...

Art

Ok.. thank you, Art!

I just added a the probiotic SOLACE supplement to my husbands daily intake. In the description was the word Psychobiotic - which is what caught my attention.

Their link: solaceprobiotic.com/

Stated on first page is: Clinical trails are examining the effect of pro biotc PS128 on Parkinson's disease symptoms.

Solace with the Psychobiotic PS128

Evidence suggests that certain microbes can have positive mental health benefits. Such bacteria, called psychobiotics, impact the ability to deal with stress, moderate feelings of anxiety, and maintain a balanced mood.

The psychobiotic strain Lactobacillus plantarum PS128 was isolated after testing nearly one thousand strains of bacteria. PS128, a natural bacteria extracted from the mustard green plant, proved especially effective.

Multiple research studies have demonstrated the remarkable properties of PS128. Not only does it strengthen the immune system, but it also benefits mental wellbeing.*

=============

**....Please Note the extraction is from the mustard plant - the same item suggested to add to broccoli .

My husband has been taking it for about two weeks now. I also upped his B1 from to 400 to 500 the same week (working up to 1,000).

In the last week I have wondered if he isn't just more alert? Or if it isn't me looking for something? I have also noted his slight tremor is missing. But it comes and goes.

My husband has not be diagnosed with Parkinson's, but I am pretty sure that is what he has. We saw a neurologist who said he probably had it, come back in a year. His first symptom was lack of rem sleep, acting out his dreams - it took me two years to connect it to Parkinson's.

After reading this forum, which I have more respect for then I can say, and certainly more respect then I have for the neurologist we saw, I am not anxious to go back to a neurologist. But he has been taking mucuna for at least 6 months, among other things like B1, melatonin and CBD

My mission is to slow the progress of PD as much as possible. And I sincerely thank everyone for every post on this forum. I have learned SO VERY MUCH.

The product was expensive - but I will continue to use it - especially now after reading Art's posts.

Ghmac,

Please keep us updated on how your husband does on Solace. They did not include the actual study, just their article description of the study so it is hard to tell what exactly the study did show.

You're right, it is expensive at $50 for a one month supply + $30 for shipping with ice packs or $80 per month for a single bacteria probiotic with 30 billion CFU (colony forming units).

Art

Makes sense. The gut is also a focus for folks contracting Lyme Disease.

chartist profile image
chartist in reply to LindaP50

That would be great if manipulating the gut microbiome turns out to be useful for Lyme disease because long standing Lyme disease and its multiple co-infections can be very difficult to treat and antibiotic resistance only adds to the problem.

Art

Agree. Husband went to the Stram Center (integrative medicine)to be treated for Lyme disease. All out of pocket costs. Expensive. Treat the whole person and focus on the gut and inflammation.

My husband's Lyme morphed into PD. Perhaps if he didn't get Lyme the PD may have not appeared at all (77yo when diagnosed and he's now 82), or maybe when he reached 100yo. We think because he worked with chemicals at a printing plant for years, in Army for early Viet Nam and used Roundup along with Permitherin.

From the VA site: "The U.S. Department of Veterans Affairs (VA) estimates that 110,000 veterans have Parkinson’s disease (PD).

Most people with Parkinson’s develop symptoms at 50 years of age or older. One million people in the U.S. live with Parkinson’s today. This number will rise as our population ages, as will the number of veterans diagnosed with the disease. While living with Parkinson's can be challenging, an early diagnosis and beginning treatment can help people live well with Parkinson's.

While the exact cause of Parkinson’s is unknown, research suggests that its cause can be linked to genetic and environmental factors. In addition, for some veterans, developing Parkinson’s disease can be associated with exposure to Agent Orange or other herbicides during military service. Veterans with PD who were exposed to certain herbicides during their service may be eligible for disability compensation and health care."

chartist profile image
chartist in reply to LindaP50

Were they able to eradicate the Lyme and co-infections?

Yes, I have a brother who was exposed to Agent Orange in Vietnam and developed a myriad of health issues that I have tried to help him with.

Art

LindaP50 profile image
LindaP50 in reply to chartist

For my husband, we aren't sure. Many of his totally Lyme symptoms went away. Glutathione injections helped alot. Seems then the PD was starting to kick in. He didn't want to do the chemical cleansing (not the right term).

I know several people who were hospitalized for Lyme, some who couldn't even stand and had to crawl. The Stram helped them get their lives back. Lyme disease doesn't go away 100%.

All out of pocket and can be costly but does work. Change your diet, taking antibiotics (really have to watch that cause can affect kidneys - lots of blood working checking to be done), Lyme detox, work on gut inflammation, eat fermented foods (this works) and so much more.

Here's one of the prominent Lyme disease doctors - amazon.com/Better-Solving-M...

LindaP50 profile image
LindaP50 in reply to chartist

Art - did he go to the VA? Check out their website - he can get assistance from them at no cost.

chartist profile image
chartist in reply to LindaP50

Yes, he did. The military offered him multiple benefits which he has used to a certain extent. I guess they knew how really bad Agent Orange was for the troops.

Art

LindaP50 profile image
LindaP50 in reply to chartist

Good. I'm glad they acknowledged and are supporting the troops!

Despe profile image
Despe in reply to LindaP50

Linda,

My husband is an AF veteran, served for 30 years. He was stationed on a tiny island between the Philippines and Hawaii where they had stored Agent Orange. While he was there, contractors incinerated it. He was stationed there for a year. In addition, he went through chem gear exercises multiple times a year. He did file for disability benefits, but VA turned it down! They said that my husband did not participate in the incineration although he was within a very close proximity. I believe that was one of the reasons he now lives with PD.

LindaP50 profile image
LindaP50 in reply to Despe

Despe, so sad. When did he file for disability benefits? The VA in the last couple of years have changed their outlook and realize PD is associated with Agent Orange.

From the VA web page: "For everyone with Parkinson’s, an accurate diagnosis is critical because treatments and resources are available to help people with Parkinson’s live better lives. Many U.S. military veterans with Parkinson’s have access to specialized medical care and financial assistance through the U.S. Department of Veterans Affairs (VA). Veterans and their families can get help with applying for care and benefits from an accredited representative or Veterans Service Officer (VSO) at the VA webpage: Get help filing your claim or appeal.

Veterans and their families can call 1-800-MyVA411 (1-800-698-2411), a single access point to all VA contact centers. The number is available 24 hours-a-day, 365 days-a-year to serve Veterans, their families, caregivers and survivors."

Despe profile image
Despe in reply to LindaP50

Linda,

Thanks! We know we can appeal the decision. My husband didn't want to bother.

We filed it in June-July 2018.

Regarding things that are often mentioned on the forum that seem to improve the gut bacteria balance, two often mentioned ones are fish oil and CBD and interestingly, they have synergy together in terms of positively affecting the gut microbiome, reducing inflammation and reducing intestinal permeability according to this study in mice :

frontiersin.org/articles/10...

So potentially if you are taking one or the other, you may get better benefit taking both.

Art

It looks like the list of things that can affect the gut microbiota continues to expand and you kind of expect that to be the case, but this one surprised me. According to this study, and this should be of great interest to anyone who exercises, the exercise has an effect on the gut microbiome, temperature has an effect and the combination has an effect, but they they can all have different effects on the gut microbiome!

frontiersin.org/articles/10...

Art

In the interest of combining another PD idea into this thread, for those of you who have been following the red LED light posts on the forum, there is some discussion of the hat or crown with the red led lights in it that are thought to be strong enough to actually penetrate the skull and have positive effects on the brain itself.

There is also discussion of using a mat or sleeping bag device with red lights in it to apply the red light therapy to the abdomen instead of the brain. This type of light therapy is referred to as Photobiomodulation or PBM. The idea of applying PBM to the abdomen is to alter the gut microbiome or gut bacteria from an over abundance of bad bacteria, as seen in PwP, to a healthier balance of good and bad gut bacteria, as seen in healthy people, which according to a newly released study can have very positive health benefits.

I refer to this study as the FMT study. FMT stands for Fecal Microbiome Transplant, which is a nicer way of saying they take the stool from a healthy individual and put it into a PwP. In this particular study, the results were that they were able to eliminate constipation, eliminate SIBO or Small Intestinal Bacterial Overgrowth which is not normally that easy to do and SIBO is present in about 25% to 50% of PwP, depending on what research you are reading and can cause havoc in the gut. They were also able to significantly reduce both non motor symptoms as well as motor symptoms in just 12 weeks. These are very impressive results and FMT is already in use for other health conditions, but this was the first FMT study reporting their results in PwP.

So to get back to the red light discussions, the point of "combining " is that red lights are already available and if they can shift the gut bacteria toward a more healthy bacterial balance as the FMT study did, that seems like possibly a better option than putting someone else's stool inside of you and although FMT is very close for PwP as an up and coming treatment, PBM is available now. So by combining ideas about PD, we may potentially have more options for PwP and this forum is where we are tossing these positive ideas around!

Lastly, if I understood correctly, there is a study in progress, I think in Australia that is testing PBM using the crown and abdomen exposure to the red lights also. What I am not clear on is whether they are exposing the abdomen to LED red lights or laser light which is considerably more powerful than LED and it also costs more than LED lights. I also think the study will be concluding relatively soon and will show their results shortly after. Very exciting times!

Winnie The Poo is already in test mode!!!

Art

JBOVERT profile image
JBOVERT in reply to chartist

ART Thanks for the information....I have a red light coming to me soon and will try it out!

chartist profile image
chartist in reply to JBOVERT

Jim,

Which light did you choose?

Keep us posted on how it works out for you!

Art

JBOVERT profile image
JBOVERT in reply to chartist

HI Art I picked the red light coronet from all red and it is kind if pricey:) But I Figured that I would go ahead and get it coming my way..so we shall see..YES and for sure I will keep everyone up on how im feeling.

JBOVERT profile image
JBOVERT in reply to JBOVERT

ART Hey checkout the post that has a woman with a surfer magazine in Australia and what the cardiologist had to say about the red light therapy and the gut microbiome...MAN IT WAS SO UPLIFTING I LOVE THIS FORUM SO MUCH:)

chartist profile image
chartist in reply to JBOVERT

JBOVERT,

Since your reply to me was actually a reply to yourself, I did not get a notification that you replied and only now saw your reply by chance. Where can I find the post you are referring to?

Art

JBOVERT profile image
JBOVERT in reply to chartist

SURFERHEALTH.COM/AU/NEWS/2

chartist profile image
chartist in reply to JBOVERT

Okay I found the post you mentioned and now it seems clearer that they used laser light and not LED light, which is at least twice as expensive as the LED light head mounted device that has been mentioned on this forum . The actual 2 devices they used in the study cost in the $4,000 to $4,500 price range and will not likely be covered by insurance as it is experimental. It will be interesting to see how their results compare to the FMT study which had significant results in PwP in 12 weeks time.

One clear difference is that the FMT results lasted at least 12 weeks with no further treatment other than the single transplant at the very beginning of the study, whereas one of the example testimonies they used for this laser light treatment that talked about very improved sleep also mentioned that if the light treatment was stopped, the insomnia returned quickly. So in this sense, FMT would appear to have an edge over the PBM/laser light therapy.

It would be nice if they released the study results, rather than allow articles to be written about the study that really only tease as to what their actual results in PwP are. The researchers who are working with the PwP in their study, are fully aware of how important this therapy may be for other PwP world wide, yet they essentially release a teaser article like this, but not the study results and I find that to be almost cruel! As someone who does not have PD, it may be out of line for me to make such a comment, but that is how I feel.

Art

JBOVERT profile image
JBOVERT in reply to chartist

ART NOW IM AM UNSURE AS TO WHETHER I MADETHE RIGHT DECISIONsince the hat I bought from red light does not use any lasers they do have good reviews but now I am unsure of what I should do what do you think?

rescuema profile image
rescuema in reply to JBOVERT

You do not need laser. The 810nm infrared will penetrate just fine, and even plain led @660nm red light used elsewhere in the body such feet have positive effect for PWP. You’re fine with Coronet.

chartist profile image
chartist in reply to JBOVERT

JBOVERT,

In order to give you an informed answer, I would like to see their study results. If their results are spectacular then I would think the LED/Infrared would be powerful enough to make a meaningful difference, but if their results using laser light is only marginal then I would be inclined to think that red LED light may not be strong enough to effectively penetrate the skull and abdomen to produce significant improvement.

To me the near infrared light seems to have more evidence for its health benefits and it can penetrate the skull and into the brain about 1 5/8ths inches. We don't know with certainty exactly how the gut biome reacts to PBM and based on the FMT study, that could be the more important effect and we will know more about that when they release their study results which hopefully will be soon, but those results appear to be based on laser light therapy which is more potent than red LED light therapy, so this study may not answer the questions about red LED light therapy and the gut.

If I remember correctly, the thickness of the skull can be an issue in FUS therapy and if that is correct I wonder if the thickness of the skull is an issue with PBM also. Marc could probably expand further on skull thickness and whether it is an issue or not in FUS.

On a related note, PBM is shown to produce reactive oxygen species (ROS). This fact may mean that taking a potent antioxidant /radical scavenger like NAC or melatonin simultaneously with the light treatments may offer more benefit for the user. In the San Francisco study this concept proved to be more effective in terms of actual benefit to the user than not using hydrogen water as an antioxidant. They used hydrogen water, but NAC and Melatonin should be comparable in terms of antioxidant and radical scavenging abilities.

ncbi.nlm.nih.gov/pmc/articl...

This study tends to confirm the use of LED that is not directed through the skull, but rather upward at the base of the skull where the skull meets the neck and begs the question, if the coronet is attempting to penetrate the skull using near infrared and red LED, is the red LED actually doing any good? In the 2021 San Francisco study, it appears they are actively trying to transmit the LED in such a way as to avoid the skull as much as possible??? Is this possibly a better pathway to deliver the red LED light?

Art

JBOVERT profile image
JBOVERT in reply to chartist

IM THINKING that the red light is going to be most effective on the abdomen so I am trying to source a another provider right now while simultaneously trying to get thered light coronets doc to tell me what she knows so we will see what happens tommorow....

chartist profile image
chartist in reply to JBOVERT

Keep us updated, Jim!

Art

I'm right with you chartist! From what I've read, PD may be fed from pathogens from the gut, so the first thing you would want to do is fix the gut and prevent more damage.

To fix the microbiome the options I've found are:

1) The Specific Carbohydrate Diet. I found a study showing the SCD on it's own can normalize the microbiome providing the subject had the required spectrum of flora.

2) If the SCD did not fix the microbiome by itself, I would add FMT.

- I'd go on the SCD months before starting FMT and stay on the SCD for years afterward.

- I think long term use of crapsules would be the best way to get the needed extra flora into the system. I think I'd be popping those crapsules 2 weeks on, 1 week off, for a year straight.

I don't have PD. I have REMSBD. I'm on Wahls Paleo Plus now but plan to convert to a keto version of the SCD. Hoping and praying this will fix my gut (and melatonin and idebenone will fix my brain).

Thanks for sharing your always inciteful thoughts on this subject chartist. You have some great ideas.

B_U,

Melatonin may help with the RBD also :

ncbi.nlm.nih.gov/pmc/articl...

Melatonin clearly has brain, dopaminergic neuron and mitochondria protective effects, but it also has gut microbiome shifting effects toward non-pathogenic bacteria. I am going to add a reply to the melatonin / PD pt.2 post tomorrow that mentions it. You name the issue with PD and melatonin seems to work against it!

Art

I know I keep saying "thank yo so much" but dang! Thank you so much!

One thing I have noticed in reading people's thoughts on things to treat PD is they will say "it does not cross the blood brain barrier so it probably will not help". I know I am stating the obvious to you, but I'll say it: These people may be tossing out useful treatment options based on thinking the treating substance needs to actually reach the brain.

I look forward to reading your next post on this topic!

With melatonin, you don't have to worry about it crossing the blood brain barrier(BBB) because it easily does and it or its metabolites are also capable of repairing a damaged BBB! Melatonin readily passes into all body tissues and is protective of all major organs and that is one of the reasons it is almost ideal for treating Covid-19. Once in the brain, melatonin can protect DA neurons, mitochondria and neutralize reactive oxygen species, reactive nitrogen species and another important one that does significant damage and is at elevated levels in PD, but is rarely mentioned, peroxynitrite.

Art

JayPwP profile image
JayPwP in reply to chartist

Please update your original Melatonin pt. 2 thread

chartist profile image
chartist in reply to JayPwP

Done!

healthunlocked.com/cure-par...

Art

Something happened to me about 10 years ago. Maybe I already told this story .

I had a problem with an allergic reaction to some of my PD medication which resulted in rash on my legs that became infected with a bacteria that is normally in ones bowls but if it gets into your flesh and blood it is very dangerous. Everything went down very fast and I went from antibacterial by pills , to a small IV pump I had strapped to me , to the intensive care with IV drips to an operation to cut away infected flesh to a frantic search for a different antibiotic to a wing and a prayer. I was almost done , except at the last minute ( dramatic license) they tried a soup of anti-bacs that worked .

I took those anti-bacs a long time 6 to 8 weeks after.

(Dont you love a dramatic build up)

The Parkinsons was gone . My neurologist told me to stop taking most of the PD meds but not all and watch for a slow return of the PD.

I told him I thought that the bacteria in my gut that obviously caused my PD had been killed.

He said that there is a bacteria in our guts that inhibit the uptake of the PD medication and that we killed it off but it would be back. He was right, it came back with a vengance.

chartist profile image
chartist in reply to GymBag

The sad part is that antibiotics are not very selective and wipe out the good with the bad bacteria and can often initiate Small Intestinal Bacterial Overgrowth (SIBO) which is likely to worsen Parkinson's disease via worsened motor symptoms.

pubmed.ncbi.nlm.nih.gov/246...

SIBO is present in roughly 25% to 50% of PwP. SIBO is difficult and time consuming to get rid of. Interestingly, the FMT/stool study eradicated SIBO and constipation while improving the gut biome diversity and shifting the overall gut bacteria toward healthier bacteria and reduced both motor and non-motor symptoms in just 12 weeks in PwP.

Art

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