Parkinson's Movement
13,782 members12,337 posts

T cells involved in the cause of Parkinson's

sciencedaily.com/releases/2...

A very interesting article

60 Replies
oldestnewest

Very interesting indeed.

3 likes
Reply

Yup, so it appears to be an autoimmune response of the brain.

1 like
Reply

... and there are well known ways to dampen the immune system (for transplantation)

1 like
Reply

What do they do?

Reply

They suppress immunity after the surgery with some chemical. The treatment is for life. I wonder if someone looked into this to see if people with Parkinson who had a transplantation saw their PD symptoms stopped or cured.

1 like
Reply

That would be interesting to find out. Would that be a response to parasites in the brain? In post-mortems they found parasites in both Alzheimer's and Parkinson's brains.

Reply

I will try to find out.

1 like
Reply

Having PD usually would exclude them from the transplant list in the US.

Reply

This article looks at Multiple Sclerosis the same way, that is, the immune system increasingly attacks the brain for a lifetime -- the same neuro-immune problem in Parkinson’s.

This article finds that a tiny bit of Naltrexone, an opiate antagonist, causes the brain’s opioid receptors to manufacture more opioid growth factor to oppose the “infiltration” of immune cells that attack the brain.

What I think is cool about it is that Naltrexone is not the drug doing the job.

It is just a catalyst — the drug that actually does the work protecting the brain is made by the brain itself and so it is —

1. Created right where it is needed. No BBB problem.

2. A drug is a foreign chemical that can be excreted too slowly and concentration can build to toxic levels. When the body’s own cells are doing the job, they do not manufacture willy-nilly large, toxic amounts of anything.

3. Autoimmune medications cripple the immune system to reduce the damage when it attacks itself. Cancer and infections are progressive side effects of these Multiple Sclerosis drugs.

However, Opioid Growth Factor gets the immune system to back off by making it smarter, leaving its protective functions not just unharmed, but enhanced.

So, turning down an immune attack without turning down the immune system is a new thing.

It seems to me, that it should be easier to increase the brain’s tolerance for a/syn than to get rid of the stuff.

The idea of Parkinson’s being caused by a continual attack of one’s own immune system on the brain is exciting because we already have the med - Naltrexone. So far in my reading, it appears pretty harmless at the micro-dosing, cheap and easy to get. (I know someone who's been taking it for 10 years and yes, I'm going to consider it. )

In a scenario where two people have identical levels of irritating gunk, the more tolerant brain will not initiate the inflammatory cascade of brain damage and the person will accordingly experience less behavioral impairment and much slower or halted disease progression.

journals.sagepub.com/doi/ab...

5 likes
Reply

Wrote this lengthy response and it disappeared. I have been posting about LDN for a while. I must have been taking it for about 4 years now and I see a difference when I forget to take it in both the body pain and the feeling of well-being. I buy 50 mg pills and dissolve them in 50 mL of water and using a dosage syringe I take 3 ml each day. It does not make any difference what time of the day you take it. I think that 3 ml is just about right.. in us they don't have any Naltrexone without the coating, however the coating dissolves nicely in water also. I keep the little bottle in the refrigerator and wash it well each time between the pills.

5 likes
Reply

Thank you much parkie. I don't know how I missed it, but I thought there had been scant posting on HU about this. When the VA gave me the voice recognition software, they sent a young man over here for 4, two hour sessions to train me. About midway through his 3rd trip, that is, after it's been about 5 hours with him, he told me he had MS. I was stunned. There was no impairment at all in this movement and I would've noticed if there was. He told me about Naltrexone, how it worked and that's when I started reading about. Hearing that you're taking it is all I needed to push me over the line.

3 likes
Reply

I'm going to go back and find your posts.

Reply

A lot of people with Ms take Naltrexone with very good results. Sounds like they respond a lot better to it then Parkinson's people. The cheapest way to take it is by dissolving the pills, if you get it made up by compounding pharmacies at least $30 a month.

3 likes
Reply

Hi , I'm taking LDN pills of 4,5 mg every second night for about two weeks.

Last years you don't find much anymore on the internet about LDN and Parkinson.

How long to take (on average, any data ?) to notice effect ??

And my doctor (a specialist in chronic deseases (but unfortunately immense overbooked, Dr. Joachim Mutter), advice me also to do subcutaneous injections of DMPS

(but he says it will take over 50 times by Parkinson to see some effect, I don't know if I am able to do this financially)

2 likes
Reply

At first when I started taking LDN I did not think it was doing anything. However each time that I stopped I was not feeling as well as when I was taking it. Now when I stop I get pain and I am unhappy. It did not take very long from noticeable Improvement.

Here's the link for DMPS, I don't know anything about it.

1 like
Reply

JANVAN,

A friend, whose research I highly regard, sent me this.

"Dear Marc,

If you look up Naltrexone, all the information you read will be for the higher dose.

NALTREXONE 50 mg.

Naltrexone in ordinary doses for alcohol and opioid abuse is more than 11 times higher than the low dose.

A week at the ordinary dose is 350 mg.

(vs 31.5 mg. for the low dose.)

This makes all the difference.

At the drug dose, Naltrexone is occupying all of the opiate receptors, and daily dosing keeps them occupied so that there is no availability if the person should slip up and use an opiate. Nothing will happen.

There is also no OGF produced.

This higher dose :

•is not without side effects

•is potentially damaging to the liver

•is not safe for everyone

•does the opposite of LDN.

There is nothing good about it except as an addiction treatment.

LDN

Short term

•affects only a few opioid receptors (in the brain) each night

•by occupying those receptors (so the endogenous opioids can’t), the dummy substance tricks those receptors into thinking there are not enough endorphins

and so

•triggers a rebound increase in endorphins.

•the way the brain makes more endorphins is to make more Opioid Growth Factor (OGF)

•OGF smartens up the immune system so that it quits attacking the brain.

•in a few hours, the LDN is gone, while the extra OGF remains.

LDN

long term

over many nights,

•the brain is tricked into growing a bigger and bigger bed of opioid receptors

and so,

•the ongoing higher level of endorphins rises, giving better pain tolerance and curing opioid depletion depression

and

•the ongoing higher level of OGF increasingly schools the immune system to protect brain cells instead of attack them

so

increasingly,

•the conditions previously causing the attack on the brain cells are no longer capable of provoking the reaction.

—————————————————————-

So, even though

whatever has caused

the immune system to attack neurons

May not have changed at all

(or even worsened),

what has changed

is the immune system.

and so

•the neurodegeneration (inflammation and cell death) resolves.

Only the low dose (4.5 to 6 mg.) does any of this.

—————————————————————

Unlike the standard dose, at the low dose, everything it does is good.

•The good effects only happen

with the tiny dose

(as a catalyst, not as a drug).

•It tricks the brain into making more OGF from the inside.

•A tiny bit more every night.

More is not more.

More has the opposite effects.

More does not make more endorphins or OGF.

More loses the trick.

Taking 10 times as much of any drug changes things in terms of toxicity.

But in this case it completely changes what the drug does because at the low dose, it is not enough to work as the drug.

It’s just a catalyst —-

an an odd way to deliver more OGF to the brain.

"

5 likes
Reply

Thank you very much !!! for the post.

Just being a bit down, while checking my opportunities to work still a bit and to let

the insurance pay a bit...

For a year I've stopped with LDN. Why I didn't have more patience.

Of course there is also I heavy metal issue by me, and the doctor who treat

me says, it is very hard to get it out of the CNS......

Still curious about the Hinz-Protokoll.....there not coming quickly more case videos on the website.......sowieso financially and logistically it is very difficult for me.

Nevertheless, very impressed about that first video....

1 like
Reply

Hi !

Reply

Hi ! And how long on average does it take to get effect of 4,5 milliGram LDN ??

(what does the literature on average say or your friend ??)

Reply

JANVAN,

Here is my friends reply to your question about how long to notice an affect. I think it's a good, articulate description. It tracks with what parkie has said, i.e., you won't notice until or unless you stop. I share the opinion that nutritional adjustments (which lead to alterations in one's brain chemistry and body chemistry) happen very gradually and are most often undetectable. It goes back to the question, "Is my supplement regimen doing me any good, and if so, compared to what i.e. where would I be without it?

"1. Dosage

I cut one 50mg pill into 11 pieces.

A micro dose doesn’t have to be exact since people use 3 to 6mg.

I started off with a more accurate method :

Dissolve one 50 mg. pill in 11 oz of water and drink an oz. before bed every night.

The liquid needs to be kept in the frig because the pills are sugar-coated (bad taste !) and will mildew before 11 days are up.

2. Results

Over the years I have set up a lot of people with this stuff but only 2 stuck with it.

People want a drug to do something like opioids or amphetamines or antibiotics —and they want to feel it fast.

LDN is a catalyst, not a drug. It does nothing itself, but makes you do something.

Over time, your brain is happier, but health sneaks up imperceptibly. Not a drug, you won’t feel anything. With just a few neurons affected at a time, you wouldn’t expect it.

(The exception is Multiple Sclerosis. Occasionally the first dose or two restores the ability to walk. There have been cancer remissions. But these are the exceptions.)

With myself and the other two people, at some point over the years, we let it slide and we all had the same reaction.

Unlike others of our age, we had been blissfully unaware of advancing age and very quickly — each on our own — decided we didn’t even want to wake up and know what life felt like without that tiny cheap little crumb—and got back on the wagon for good.

I think, like Nilotinib, you just have to believe in the science and just do it for a while. I am positive you won’t notice anything.

Most likely in a year you will notice that things got easier, fewer things upset your equilibrium and the expected disease progression didn’t happen.

For years, the LDN protocol has helped people whose illnesses had the common denominator of inflammation.

Lots of things are anti-inflammatory to the body.

LDN is the anti-inflammatory for the brain.

And that’s us.

Just as we don’t notice the neuron-killing inflammation creeping up, so we also won’t feel it being dialed down —-because the brain doesn’t feel pain.

My fingers are so twisted from arthritis (before LDN) that they point in different directions — but the joints no longer ooze and I have had no pain anywhere for years and don’t even have an NAISD in the house at 67. My hands look just terrible all mangled—but feel just fine.

We only CAN feel the inflammation in our joints and that is guaranteed to improve.

And when it does, we can assume the inflammation in our brain has silently improved as well."

1 like
Reply

Very thanks for this extended post !!

How it is with every second night a pill (I have pills) of 4,5 mg instead of every night ??

And you do use also VIT B1 injections ??

Reply

I could save myself a lot of time by not doing any more research and instead just reading all your posts.

2 likes
Reply

I don't think the posts have very much research content in them. I think I was writing mostly about being able to order it from Canadian pharmacy if your physician doesn't give you a prescription for it. There's lots of information on the internet about it.

1 like
Reply

parkie13,

For me this is very interesting. As some on this forum may know, I do not have PD, but I do have psoriasis, which many describe as an autoimmune disease and Th-17 is a major player in the progression of the disease, in all of its forms, of which I have had five of the forms to a very severe extent to the point where one form, erythrodermic psoriasis, almost killed me. It makes me quite mad when some unknowing people refer to psoriasis as a "cosmetic inconvenience"!

Psoriasis is a lot about runaway inflammation and oxidative stress so in my efforts to break this vicious cycle that methotrexate and oral and topical steroids were not able to do, I turned to supplements as a means to effectively break the cycle, so I think this article is narrowing down the inflammatory causative agents list in a very good way! Thank you for posting this, parkie13~

Art

4 likes
Reply

Art, do you feel you made progress in relieving your condition?

Reply

Marc,

Yes, I do. I went from approximately 90% body coverage, to now where I have one spot of psoriasis on my back that feels like it is about the size of a dime, so yes, unbelievable progress! At my worst, it would have been almost impossible to find unaffected skin on my body......very severe! My psoriaitic arthritis that was also severe and affected most of my major joints is also in remission!

Art

3 likes
Reply

That's really terrific. Makes my day to hear such a success story.

When I have an adjacent appointment at the VA, I sometimes drop in on 1 of their Parkinson's support groups and when I talk about HU, what I've learned, and what I do, I am dismayed that none of them participate in PD forums, do research or seem to understand there's some things they can do -- like I'm speaking a foreign language to them. After little while, the support group turns into a rapid fire Q&A.

I've often wondered what it is that separates those who seek relief from those who don't. Maybe it's something as sad as their doctors told them there's nothing to be done and they take that as the final word and do nothing.

I believe that for many of us there is the sweet spot out there and looks like you found yours. Congratulations.

2 likes
Reply

Marc,

Thank you!

As far as why people seek out other non pharmaceutical solutions and others don't, I think there could be quite a few reasons. I know that my three friends with PD have been told by their respective doctors that supplements do nothing for PD and whenever they read something regarding an alternative option for PD, their doctors are quick to give them a negative response to it, so if you are of the mindset that the doctor always knows best, then these doctors responses tend to instill that line of thinking.

Other people look at things with possibly a more open mind and are more open to the idea that alternatives may have some value for PWPs and consequently are more open to the idea of trying them.

Others may have run out of medical options and have either not gotten good results with their meds or can't tolerate their meds and essentially have little choice other than to try alternatives.

Still others may be getting satisfactory results with their meds and consequently are not interested in fixing what ain't broke.

Another possible reason is that some people have the attitude that they are going to try anything and everything to improve their quality of life.

Some people who don't have insurance may select alternatives simply because it is what they can afford.

These are just a few ideas and I imagine that some people may be any combination of the above or other reasons.

Art

1 like
Reply

No doubt, some combination of those reasons. I think some PWP don't understand is that while nutrition and supplements likely don't affect the misfolding and aggregating of a/syn, they do mitigate the ancillary illnesses and inflammation triggered by PD (which accelerate the progression which worsens those conditions which celebrates the progression.)

3 likes
Reply

I personally like the idea of supplements but my hubby does not and nothing will convince him to try them. I think that the information I read on this site is so interesting and I have learnt quite a lot from it. Thank you all. Suffering Socks.

Reply

Ms. Socks, What if you gave him an abstract(s) from a placebo-controlled, double-blind, crossover, peer reviewed, NIH study? What does he say about the 1st hand reports on this forum about thiamine? Seems like those would be pretty hard to ignore - if one wanted to improve their health. Just wondering?

Reply

Thanks for your comments MBAnderson. Hubby has not read anything on this forum, I shall endeavour to get him to check the reports out. I do appreciate your advice. When I checked my emails today I clicked on one of your comments and it took me to your profile page and found it so informative, thank you very much for taking the time to do the research and share it with others!

(Joy) Suffering Socks

3 likes
Reply

Art,

What are you doing/taking to help with your Psoriasis? My friend's son has it and is taking a good amount of pharmaceutical. Her son is only 12. Feel bad for her and her son.

Mon

Reply

MWLE,

What I am taking is fairly simple, but if you need them, I can get the studies for you that will generally explain why I selected them.

I started with a now brand product called Pine Bark Extract 240 mg. I selected this particular product because it also contains EGCG, the active component in green tea. Both substances are well known for their anti-inflammatory potential and egcg is also well known for its antiangiogenic activity which is very important in a highly proliferative disease like psoriasis or cancer. So that is the first supplement I started with.

The next supplement is xylitol and I chose this one for its anti-inflammatory potential through its butyrate producing effect as well as its biofilm inhibiting qualities , gut healing qualities even though I had no apparent gut issues and hydrogen sulfide agonist potential which is also anti-inflammatory. So this product I mix in water and sip throughout the day. The butyrate also acts as a histone deacetylase inhibitor which is very important in diseases like psoriasis, PD and cancer to name a few.

The next thing I added was a home made topical lotion made with an herb called indigoferra tinctoria, but can be found in multiple studies just described as indigo naturalis. This lotion is also a TH-17 inhibitor. All of the above affect many other pathways in the body, so this is a very basic explanation of what they do.

The very first thing I tried was the borax and that has kept my psoriatic arthritis in remission for about a decade, but this would not likely be needed or desired for a 12 year old unless he happens to have PA or one of the many other forms of arthritis such as juvenile arthritis. The borax had no effect on the psoriasis itself.

That's about it. Basically three supplements, one in capsule form, one as a drink and a topical lotion.

Art

4 likes
Reply

If anyone is interested in using borax for arthritis you can look up Walter Last, borax.

Reply

This post contains information on borax for arthritis and other health issues:

healthunlocked.com/parkinso...

Art

Reply

MWLE,

I forgot to mention that whatever your friend and her son decide to do, cutting back on sugar should be additive while actively trying to fight the disease, because sugar is very inflammatory. You didn't say how severe his psoriasis is and what meds he is currently taking because that will matter. If he is fairly well controlled, the topical lotion may be enough to help.

Art

Reply

Always like sugar is hiding in there somewhere.

Reply

My psoriasis ( much milder than yours ) disappeared when I had been on a keto diet for about 3 months. The pain from psoriatric arthritis also went over, though it took longer. I had been told I had lupus as well and I had no improvement with cortisone and methotrexate.I was in constant pain.

I have been on LDN for 6 months now. I can't say if it has done anything for my pd but it has cleared out my diarrhia.

1 like
Reply

Very interesting >>> that's for a big part the reason of success of the Coimbra-Protokoll bei MS. And also, but just in some few cases (!) by Parkinson.

Curious if some people here have tried the Coimbra-Protokoll.........until now no succes by me :-( :-(

Reply

What is the cause of Parkinson’s?

Here’s a theory. (Who am I to have a theory? I know.)

Alpha synuclein, Tau, beta Amyloid plaque, aka gunk, irritates/triggers immune cells and they do damage.

Where does the gunk come from? Bad genes cause the mis-folding that then prion-like multiplies to irritating levels.

How to get rid of gunk? Nobody knows. Tyrosine kinase inhibitors seem the best bet right now.

What to do if you can’t get rid of gunk? What to do while you are working on getting rid of gunk?

Make the immune system more tolerant because without the immune response, it does no other harm.

The problem occurs when T-cells are summoned by inflammation, the immune response to aggregating a/syn. Constant provocation by a/syn that seems to them like the response to infection that they have failed to overcome shifts them into high-threat level, defcon 4 -- killing mode and in that mode they do not recognize self and unknowingly turn on the body, killing their own cells instead of pathogens causing autoimmune damage.

The answer is to diminish the immune attack in the brain without damaging the immune system as a whole.

Could it in be low dose Naltrexone is the best substance that can do this?

1 like
Reply

Where do you think the parasites fit in? Post-mortems on brains of both Alzheimer's and Parkinson's people they have found parasites in their brains.

Reply

Would you please post your parasite link again?

Reply

I'll have to look for it, hope I can find it

Reply

I wouldn't ask but I couldn't find it

Reply

sciencedirect.com/science/a...

I'm going to keep on looking, I have not been able to find it so far, But this is interesting too, have you seen it?

1 like
Reply

I find it a very interesting and credible theory that a/syn is a defense mechanism.

I think the different theories about what causes PD could easily all be correct. I don’t know why so many get caught in the mindset that there can only be one cause to a/this disease. It actually makes more sense that there might be many causes.

I mean, we’ve read credible studies that hypothesized that PD could be triggered by head trauma, viruses, Lyme disease, bacteria, defoliants, out of whack microbiota, intestinal permeability and a few other things I can’t think of now and this 1 makes as much sense as some of the others.

1 like
Reply

If it was viruses rather than parasites, it might be this one:

healthunlocked.com/parkinso...

Reply

Thanks jeffreyn, but I remember it as a link about parasites. I still can't find it.

Reply

This one mentions parasite(s) and PD.

healthunlocked.com/parkinso...

Reply

MBAnderson said: "The problem occurs when T-cells are summoned by inflammation"

Isn't it microglia that are summoned by inflammation (innate immune system), rather than T-cells (adaptive immune system)?

And anyway, stopping the adaptive immune system from causing neurodegeneration only solves part of the problem.

The following AlzForum article discusses how the innate immune system (via microglia and astrocytes) might also play a role in causing neurodegeneration in PD:

alzforum.org/news/research-...

1 like
Reply

Jeffren,

Good catch. Thank you. I intended to say/should have said just “…immune system cells…” and not T cells.

You’re right, microglia and astrocytes would be involved. Brain microglia become irritated and turn to attacking their neurons, causing inflammation and cell death. Immune cells are attracted to the inflammation as if there were an invader causing it. Over-stimulated immune cells join in with the microglial attack

A viscous circle is created. The more damage, the more attack, the more attack, the more damage. This self-feeding cycle gains momentum and accelerates through the years, and so can only be altered or arrested from outside of itself.

Good article.

1 like
Reply

medicalnewstoday.com/articl...

Another take on T cells, illustrate with the experiment

2 likes
Reply

Thanks parkie for another excellent article, especially one written in language I can understand.

1 like
Reply

Me too.

Reply

Here's another one. Short and simple.

jneuroinflammation.biomedce...

1 like
Reply

JANVAN,

I haven't gotten back to you on on your every other night question, but I will.

In the meantime, here's an encouraging article.

I got my LDN today and I'm looking forward to beginning tomorrow.

The spinal cord is brain tissue. A spinal tap tells you what is in the brain because it part of the brain. Research on spinal cord tissue is research on brain tissue. The brain is all made out of the same stuff, just like all of the heart, liver or lungs are made out of the same stuff.

This study shows that OGF (catalyzed by LDN in the brain) reduces activated astrocytes and T-cells in the brain and the damage to neurons they cause — and thereby HALTS the progression of damage to the brain — even after the neurodegeneration is already in progress.

So we don’t need to wonder if future research will show that LDN (via OGF) reduces activated astrocytes and T-cells (as well as activated microglia)...It already did.

“Neuropathological studies revealed that OGF treatment initiated after the appearance of disease reduced the number of activated astrocytes and damaged neurons, decreased demyelination, and inhibited T cell proliferation.

These results demonstrate that OGF can halt the progression of established EAE, return aberrant pain sensitivity to normal levels, inhibit proliferation of T cells and astrocytes, and prevent further spinal cord pathology. “

sciencedirect.com/science/a...

Marc

1 like
Reply

I am taking LDN for more than a year with few stops. When I started I felt the difference right away, there were no any specific new sensation; the effect that I experienced was in increase of ON time. Basically I cut 1 dopamine pill (~ 20-25% of my regiment at that time). I started with 4.5 mg, then titrated it back and tried smaller doses. Stopped few times as I was not sure it did anything. Now I am back on 4.5 mg, encouraged by number of recent articles about overactive immune system. My take on this: my disease is progressing anyway with or without LDN. So far, it's been pretty well controlled and when I am in ON state I look and feel normal, but I have to take more pills in order to control it. When I stop and renew LDN I don't see the same effect as in the beginning on the number of pills I have to take - it could be a placebo effect at the first try. Never the less, you never know what would be the progression rate if I don't take it. So, I continue LDN as many other supplements, hopping that they help. As I heard from a doctor interview - placebo effect is the most reliable medicine known at this time :)

As for overreactive immune system, I feel that it's true in my case. I used to catch cold easily before I was diagnosed and was sick constantly. Since my PD - almost never been sick, which I enjoy a lot, but not the price I have to pay for not getting sick :(.

1 like
Reply

I think there is a syndrome that happens with some drugs that when you stop and then resume them, they are less effective. Several people have said the same thing about mannitol.

I just got my supply and I'm going to begin taking it today and will continue taking it whether I feel an effect not because I believe the underlying science is good.

1 like
Reply

In full agreement with you. Will do the same.

1 like
Reply

You may also like...