Treating Central Nervous System Inflammation

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Treating Central Nervous System Inflammation

Post by inflammatory_rls »

My thread a couple days ago suggesting that Central Nervous System (CNS) inflammation causes RLS (viewtopic.php?f=5&t=10785) did not spawn as much discussion as I had hoped. Perhaps this was because the post did not provide practical guidance about what can be done to reduce neuroinflammation. The purpose of this thread is to provide information about safe and effective ways that CNS inflammation may be treated.

This post is written under the assumptions that what I wrote my previous post is true and that you have read it, so I recommend you skim it if you haven’t already done so. I do not review the effectiveness of common RLS treatments like iron or magnesium supplementation; I am sure everyone on this board is already familiar with those options. Note that I have no background in science or medicine and the information provided in this post should not be considered medical advice.

I reviewed supplements that are able to cross the Blood-Brain Barrier (BBB) and seem to safely reduce neuroinflammation. As secondary criteria, I reviewed the supplement’s ability to upregulate dopamine receptors, reduce quinolinic acid levels, and reduce glutamate levels, since the dopaminergic and glutamatergic systems seem to be some of the most affected in RLS patients. I am unsure which disease models are most similar to that of RLS, but since multiple sclerosis (MS) is caused by CNS inflammation and has non-causal comorbidity with RLS, I weighed treatments that were shown to be effective for MS most heavily. The below supplements are listed in descending order based on the level of evidence that each is effective in treating CNS inflammation.

Supplements Effective in Treating CNS Inflammation

Probiotics have been shown to be effective in treating a variety of diseases with an inflammatory component, including MS (1), rheumatoid arthritis (2), and major depressive disorder (3) in double-blind, placebo-controlled trials. There is also research connecting the microbiome to Parkinson’s disease and Alzheimer’s disease (4).

The evidence is overwhelming that probiotics can treat inflammatory disease. Unfortunately, there is also significant evidence that each disease can only be treated by a specific set of bacteria. A double-blind, placebo controlled trial found that a probiotic was ineffective at treating bipolar disorder, and the study authors wrote that the wrong microbial strains may have been used (5). Similarly, while probiotics have been effective in treating MS (1), a different double-blind, placebo-controlled trial on treating MS with a probiotic had only mixed results (6).

There is little research on the connection between RLS and the microbiome, but one study did find that RLS patients are significantly more likely to have small intestinal bacterial overgrowth (7). A study found that RLS patients treated with an antibiotic and then a probiotic containing L. acidophilus, Bifidobacterium, L. paracasei, and S. thermophilus showed improvement after a few months of treatment (8). The probiotic effective in treating MS referenced above included L. acidophilus, L. casei, B. bifidum and L. fermentum (6). I don’t think posting Amazon links is allowed on this board, but you can buy a probiotic online that contains most of these bacteria strains.

According to the American National Center for Complementary and Integrative Health, “probiotics have an extensive history of apparently safe use” (9).

N-acetylcysteine (NAC) has shown promising results for the treatment of neuroinflammation. There is evidence that NAC has general cognitive benefits for humans (10) and has reduced neuroinflammation in rodents (11), including in a model of multiple sclerosis (12).

NAC has upregulated dopamine receptors in patients with Parkinson’s disease enrolled in randomized, placebo controlled trials (13, 14). NAC has modulated glutaminergic imbalances (15, 16, 17). NAC has restored serotonin levels in depressed rats (18).

There is evidence that NAC is safe for many people. One study showed NAC may cause lung cancer in rats (19), but the rats seem to have taken incredibly large doses of NAC. Studies done in humans indicate that NAC is safe (20, 21, 22).

Alpha-Lipoic Acid (ALA) has reduced both general bodily inflammation (23) and CNS inflammation (24) in humans. Notably, ALA was shown to be safe and effective in a two-year long, double-blind, placebo-controlled trial with MS patients (25).

ALA has modulated the glutamatergic system in research done on cells (26, 27).

However, ALA has prevented the upregulation of dopamine receptors in cells (28) and has elevated dopamine levels in rats (29, 30), effects which may be harmful for RLS patients.

Curcumin has reduced neuroinflammation in rats (31, 32), and there is theoretical work showing the same may be true in humans (33). The natural polyphenol “has received worldwide attention for its multiple health benefits, which appear to act primarily through its anti-oxidant and anti-inflammatory mechanisms” (34).

Curcumin has demonstrated neuroprotective activity against quinolinic acid, which is significant given the small number of compounds shown to have this effect (35).

Very high doses of curcumin may reduce testosterone levels (36), but the supplement is widely considered to be safe (34). Curcumin has poor bioavailability, so its supplementation should be combined with piperine (34).


There are a number of other supplements that I researched and could have written about, but chose not to because their safety or effectiveness has not yet been fully established. The supplements below are noteworthy in that there is significant evidence against their use.


Ineffective or Dangerous Compounds

Omega-3 and Vitamin D have been shown to fight inflammation in certain people and circumstances, but a recent year-long, double-blind, placebo-controlled trial found these supplements were ineffective at reducing inflammation (37).

NMDA receptor antagonists, such as ketamine, may be effective in treating RLS (38). However, there is significant research showing that ketamine may hinder neuronal survival (39, 40, 41). Milder NMDA antagonists such as agmatine may be less dangerous, but I cannot in good conscience say that I am confident they are safe.

Ashwagandha, also known as Withania Somnifera, has reduced serum C-reactive protein levels (a measure of inflammation) in a double-blind, placebo-controlled trial (42). This finding, combined with the fact that Ashwagandha has protected against neuroinflammation in rodents (43, 44), meant that I came very close to stating that this supplement may be beneficial for some RLS patients.

Fortunately, as I was completing my research on this supplement, I saw that MedlinePlus warns against the use of Ashwagandha for MS patients because it may stimulate the immune system (45). If the neuroinflammation causing RLS is due to an auto-immune disease, boosting the immune system would be very dangerous. I do not understand how Ashwagandha can both stimulate the immune system and reduce C-reactive protein levels, but that is why you should be careful when accepting medical information written by an untrained, anonymous person on the internet.


I have read from a number of sources that a person’s diet plays a significant role in their level of inflammation. Just as I was typing this post, I came across Frunobulax’s remarks on this board asserting that RLS is caused by brain inflammation and stressing the importance of dietary changes in addressing RLS (viewtopic.php?f=20&t=10588). I have not yet had the time to review research on the effect of diet on inflammation, but will likely post here at some point in the future with my findings.

I only started researching this information a couple days ago, so it is likely that I accidentally missed supplements that are effective in treating CNS inflammation. Please comment below with anything I may have missed.


1. Clinical and Metabolic Response to Probiotic Supplementation in Patients With Multiple Sclerosis: A Randomized, Double-Blind, Placebo-Controlled Trial, https://pubmed.ncbi.nlm.nih.gov/27669638/
2. Clinical and Metabolic Response to Probiotic Supplementation in Patients With Rheumatoid Arthritis: A Randomized, Double-Blind, Placebo-Controlled Trial, https://pubmed.ncbi.nlm.nih.gov/27135916/
3. Clinical and Metabolic Response to Probiotic Administration in Patients With Major Depressive Disorder: A Randomized, Double-Blind, Placebo-Controlled Trial, https://pubmed.ncbi.nlm.nih.gov/26706022/
4. Impact of microbiota on central nervous system and neurological diseases: the gut-brain axis, https://jneuroinflammation.biomedcentra ... MC6266223/
5. The Efficacy of Probiotics for Treatment of Bipolar Disorder-Type 1: A Randomized, Double-Blind, Placebo Controlled Trial, https://pubmed.ncbi.nlm.nih.gov/32377210/
6. Immunomodulatory and anti-inflammatory effects of probiotics in multiple sclerosis, https://www.rug.nl/research/portal/file ... 1611_4.pdf
7. 0009 Restless Leg Syndrome: Does It Start With A Gut Feeling?, https://academic.oup.com/sleep/article- ... m=fulltext
8. Restless Legs Syndrome in Patients with Irritable Bowel Syndrome: Response to Small Intestinal Bacterial Overgrowth Therapy , http://www.specialistsgastro.com/client ... wel_Sy.pdf
9. Probiotics: What You Need To Know, https://www.nccih.nih.gov/health/probio ... ed-to-know
10. The effect of N-acetylcysteine (NAC) on human cognition – A systematic review, https://www.sciencedirect.com/science/a ... 3416303980
11. Anti-neuroinflammatory and antioxidant effects of N-acetyl cysteine in long-term consumption of artificial sweetener aspartame in the rat cerebral cortex, https://www.sciencedirect.com/science/a ... 9615000351
12. Analysis of Gene Expression in MOG-induced Experimental Autoimmune Encephalomyelitis After Treatment With a Novel Brain-Penetrating Antioxidant, https://pubmed.ncbi.nlm.nih.gov/16055951/
13. N-Acetyl Cysteine May Support Dopamine Neurons in Parkinson's Disease: Preliminary Clinical and Cell Line Data, https://pubmed.ncbi.nlm.nih.gov/27309537/
14. N-Acetyl Cysteine Is Associated With Dopaminergic Improvement in Parkinson's Disease, https://pubmed.ncbi.nlm.nih.gov/31206613/
15. Effects of N-acetylcysteine on Brain Glutamate Levels and Resting Perfusion in Schizophrenia, https://pubmed.ncbi.nlm.nih.gov/30141055/
16. N-Acetylcysteine, a Glutamate Modulator, in the Treatment of Trichotillomania: A Double-blind, Placebo-Controlled Study, https://jamanetwork.com/journals/jamaps ... cle/483113
17. N-acetylcysteine modulates glutamatergic dysfunction and depressive behavior in Huntington’s disease, https://academic.oup.com/hmg/article/25/14/2923/2525769
18. N-acetylcysteine Attenuates Neuroinflammation Associated Depressive Behavior Induced by Chronic Unpredictable Mild Stress in Rat, https://pubmed.ncbi.nlm.nih.gov/30772427/
19. The antioxidant N-acetylcysteine protects from lung emphysema but induces lung adenocarcinoma in mice, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6795405/
20. N-Acetylcysteine for the Treatment of Psychiatric Disorders: A Review of Current Evidence, https://www.hindawi.com/journals/bmri/2018/2469486/
21. The Treatment of Complex Regional Pain Syndrome Type I With Free Radical Scavengers: A Randomized Controlled Study, https://pubmed.ncbi.nlm.nih.gov/12670672/
22. Evaluating the Effectiveness of Prednisone, Azathioprine, and N-acetylcysteine in Patients With IPF (PANTHER-IPF), https://clinicaltrials.gov/ct2/show/stu ... w=2&rank=4
23. The Effect of Alpha-Lipoic Acid on Inflammatory Mediators: A Systematic Review and Meta-Analysis on Randomized Clinical Trials, https://pubmed.ncbi.nlm.nih.gov/30721699/
24. α-Lipoic Acid, Functional Fatty Acid, as a Novel Therapeutic Alternative for Central Nervous System Diseases: A Review, https://pubmed.ncbi.nlm.nih.gov/29185388/
25. Lipoic acid in secondary progressive MS: A randomized controlled pilot trial, https://nn.neurology.org/content/4/5/e3 ... ticle-info
26. Lipoic acid increases glutamate uptake, glutamine synthetase activity and glutathione content in C6 astrocyte cell line, https://www.sciencedirect.com/science/a ... 4812006284
27. Protective Effects of Alpha-Lipoic Acid on Glutamate-Induced Cytotoxicity in C6 Glioma Cells, https://pubmed.ncbi.nlm.nih.gov/30606992/
28. α-Lipoic Acid Interaction With Dopamine D2 Receptor-Dependent Activation of the Akt/GSK-3β Signaling Pathway Induced by Antipsychotics: Potential Relevance for the Treatment of Schizophrenia, https://pubmed.ncbi.nlm.nih.gov/22975849/
29. Neurochemical Changes Related to Ageing in the Rat Brain and the Effect of DL-alpha-lipoic Acid, https://pubmed.ncbi.nlm.nih.gov/12559418/
30. The Protective Role of DL-alpha-lipoic Acid in Biogenic Amines Catabolism Triggered by Abeta Amyloid Vaccination in Mice, https://pubmed.ncbi.nlm.nih.gov/15811602/
31. Curcumin Prevents Acute Neuroinflammation and Long-Term Memory Impairment Induced by Systemic Lipopolysaccharide in Mice, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845393/
32. Curcumin Ameliorates Neuroinflammation, Neurodegeneration, and Memory Deficits in p25 Transgenic Mouse Model That Bears Hallmarks of Alzheimer's Disease, https://pubmed.ncbi.nlm.nih.gov/29036814/
33. The effect of curcumin (turmeric) on Alzheimer's disease: An overview, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781139/
34. Curcumin: A Review of Its’ Effects on Human Health, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031/
35. Neuroprotective Activity of Curcumin in Combination With Piperine Against Quinolinic Acid Induced Neurodegeneration in Rats, https://pubmed.ncbi.nlm.nih.gov/26828892/
36. Curcumin, https://examine.com/supplements/curcumi ... stosterone
37. Effects of One Year of Vitamin D and Marine Omega-3 Fatty Acid Supplementation on Biomarkers of Systemic Inflammation in Older US Adults, https://academic.oup.com/clinchem/artic ... m=fulltext
38. Oral Ketamine: A Promising Treatment for Restless Legs Syndrome, https://journals.lww.com/anesthesia-ana ... ss.34.aspx
49. Why did NMDA receptor antagonists fail clinical trials for stroke and traumatic brain injury?, https://www.gwern.net/docs/statistics/m ... omidou.pdf
40. Consequences of Chronic Ketamine Self-Administration Upon Neurocognitive Function and Psychological Wellbeing: A 1-year Longitudinal Study, https://pubmed.ncbi.nlm.nih.gov/19919593/
41. Chronic Ketamine Exposure Induces Permanent Impairment of Brain Functions in Adolescent Cynomolgus Monkeys, https://pubmed.ncbi.nlm.nih.gov/23145560/
42. A Standardized Withania Somnifera Extract Significantly Reduces Stress-Related Parameters in Chronically Stressed Humans: A Double-Blind, Randomized, Placebo-Controlled Study, https://www.researchgate.net/publicatio ... lled_Study
43. Withania somnifera (L.) Dunal ameliorates neurodegeneration and cognitive impairments associated with systemic inflammation, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6694620/
44. Neuroprotective Effect of Ashwagandha Extract Against the Neurochemical Changes Induced in Rat Model of Hypothyroidism, https://pubmed.ncbi.nlm.nih.gov/31958022/
45. Ashwagandha, https://medlineplus.gov/druginfo/natura ... tml#Safety

inflammatory_rls
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Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

I have just purchased a probiotic, N-acetylcysteine, a-Lipoic acid, and curcumin on Amazon. In the coming weeks and months, I will keep you all updated on the effectiveness of this treatment.

Oozz
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Re: Treating Central Nervous System Inflammation

Post by Oozz »

I would do 1x1. It seems to me you are very excited about what you are reading and are eager to resolve this. Everyone on this board has felt the same way and I empathize with you.

My recommendation would be to only change one variable at a time. It I a very slow process, but it’s the only way to know what is and is not working. You have to be able to control so many things, that’s the problem with creating trials for inflammation. Furthermore, it could take months to notice a difference from just one new therapy. Your gut biome takes a very long time to change, I imagine your brain operates the same way.

Don’t be frustrated if things don’t work as fast as you want them to or if you don’t see the changes you are looking for.

inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

Oozz, you read me very astutely.

More than just eager to resolve my symptoms, I am borderline desperate. For years, I was able to effectively treat my RLS with gabapentin, CBD, and a weighted blanket. (Although this is a mild treatment plan, my symptoms are actually more severe than they might seem. I respond extremely well to gabapentin; in fact, I feel the effects of low-dost gabapentin more strongly than low-dose oxycodone or hydromorphone.)

Unfortunately, my symptoms have worsened considerably within the past few weeks. Having an iron infusion is an appealing option, but that can only happen in-person and most non-emergency medical facilities are not open for physical business. I will take a dopamine antagonist or opioid only if it becomes absolutely necessary.

So I have high hopes for this anti-inflammation approach. I fully agree that it would be more scientific to change only one variable at a time, but I just don't think I have the mental stamina to wait that long.

Frunobulax
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Re: Treating Central Nervous System Inflammation

Post by Frunobulax »

A reply to a small portion of this where I disagree. Omega-3 and vitamin D are controversial. Personally I think that both are important, especially vitamin D has been shown to significantly increase all-cause mortality.

There are so many contradicting studies out there that even meta-analysis will come to different conclusions depending on which studies are included. I know that there has been a lot of criticism on meta-studies for omega-3 because new, large studies were omitted that showed a benefit while older studies were included that didn't.

The study you cite is behind a paywall, so I can't give a detailed opinion on that (maybe it's available on some preprint server). I'd argue that focus on laboratory parameters answers only a little detail of the relevant question, one should always start with all-cause mortality and work down from that. And both have proven to be benefitial for all-cause mortality (life expectency in general) in other studies. Now the question is why, precisely.

For omega-3 the study has the crucial issue that omega-3 was limited to 1 gram a day. The determining health factor is the ratio of omega-6 to omega-3 in the diet which should be 4:1 or lower, but is as high as 30:1 in a typical western diet. If we consume 30g linoleic acid a day (omega-6, which isn't an outlandish number), 1g omega-3 won't make a difference.

As for vitamin D, the relevant information would be not the vitamin D intake, but the change in serum level that would have to be significant to show any effect. We know that vitamin D supplements are completely inefficient for some people, that is, serum levels didn't change. It has been conjectured that lack of vitamin K2 could be the cause, and issues with calcium. I'd also caution that vitD does not prevent inflammation but deals with the ROS. (See the analogy in my other thread viewtopic.php?p=102633#p102633: Vitamin D is the fire brigade that quelches fire and prevents major damage, but it does not prevent the fire itself.)

I'll need time to dig out the relevant studies.
Last edited by Frunobulax on Thu Jun 04, 2020 10:32 am, edited 2 times in total.

Frunobulax
Posts: 308
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Re: Treating Central Nervous System Inflammation

Post by Frunobulax »

inflammatory_rls wrote:
Thu Jun 04, 2020 12:07 am
More than just eager to resolve my symptoms, I am borderline desperate.[...]

So I have high hopes for this anti-inflammation approach. I fully agree that it would be more scientific to change only one variable at a time, but I just don't think I have the mental stamina to wait that long.
A word of caution. You're digging into an area of research where we have very contradictory evidence. That is, depending on which study you read you'll come to different conclusions. Give it some time, use different sources, read a lot of papers.

Lowering inflammation is a long-term thing anyway. In the short term, give the things a go that are in the viewtopic.php?f=1&t=3413 thread. Personally, taking vitamin B12+folate and B6 helped me significantly. I know some RLS sufferers (personally) that manage their RLS only by taking B12 and strict dietary restrictions (no sugar, most of all).

inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

A year or two ago, I actually did start taking a multivitamin with Vitamins D, K, B6, B12, folate, and other compounds. As you note, I had read elsewhere online that these compounds may help in the "short term." I took the multivitamin for a couple weeks, but didn't notice any difference.

I hadn't mentioned this in my posts because it's just a personal anecdote, but I have had some success with anti-inflammation measures. When I had mild RLS, taking ibuprofen before bed definitely helped. Personal anecdotes definitely have value, but I didn't want to mention this one because I felt that the theory should stand or fall based on the science, not my personal experience.

Another interesting anecdote is that I have unbelievably bad spatial memory, which quinolinic acid has been shown to hinder:
https://pubmed.ncbi.nlm.nih.gov/30217162

The supplements I ordered are supposed to arrive today. The probiotic will certainly take months to be effective, but I'm hoping that the other supplements will have an acute effect (or at least a placebo effect). There is evidence that NAC affects the brain after just one dose:
https://pubmed.ncbi.nlm.nih.gov/30141055/

Frunobulax
Posts: 308
Joined: Mon Jun 02, 2014 7:41 pm

Re: Treating Central Nervous System Inflammation

Post by Frunobulax »

inflammatory_rls wrote:
Thu Jun 04, 2020 3:07 pm
A year or two ago, I actually did start taking a multivitamin with Vitamins D, K, B6, B12, folate, and other compounds. As you note, I had read elsewhere online that these compounds may help in the "short term." I took the multivitamin for a couple weeks, but didn't notice any difference.
Multivitamins are unlikely to have a significant dosage. For vitamin D, I'd start with 5.000 IU a day. It takes month to make a difference. Vitamin B12 should be methylated (not cyanocobomalin) and be dosed at minimum of 1.000 micrograms, as a sublingual tablet that is dissolved slowly under the tongue. But B12 can make an immediate effect, within 48 hours of taking the first dose.

Of course, it may be that you simply had no deficiency :) Best to get the bloodwork done, measure serum vitamin D and Holo-TC or methylmalonic acid for B12 (serum is useless here).
inflammatory_rls wrote:
Thu Jun 04, 2020 3:07 pm
The supplements I ordered are supposed to arrive today. The probiotic will certainly take months to be effective, but I'm hoping that the other supplements will have an acute effect (or at least a placebo effect). There is evidence that NAC affects the brain after just one dose:
https://pubmed.ncbi.nlm.nih.gov/30141055/
Again I'd advise patience. I took all of that and much more, and only vitamin B12 and B6 had an immediate effect. But there is improvement: It took a year to get RLS under control with meds (opioids). Then I had a few years of standstill, and after that it took me 2 more years to reduce my daily dosage of oxycodone from 30mg to 20mg. So there is progress, but it's slow.

My take on supplements this is as follows: We are focusing very much on vitamins and maybe minerals. But if you look at something like garlic, there are probably hundrets of ingredients that act somehow in our body/gut. And we need the mix, my idea of healthy food isn't a vitamin pill plus empty calories :) With western diet, we eliminated a LOT of these ingredients through processing, cooking, freezing and refining. Vitamins and drugs can help if you're deficient, but they are no magic bullet. Sometimes you just have to give your body a chance to heal and repair the damage of many decades of bad food, stress, too much work and not enough sleep. And this takes more than a few days.

So personally I do the bloodwork, supplement stuff that I know I'm deficient in (or stuff that showed significant improvement in the past, assuming I fixed a deficiency), I take drugs that are necessary to survive, but otherwise I'm trying to eat as healthy as possible, hopefully enabling my body to heal itself.

This is a good video on this (I really like Robert Lustig, as he's very considerate and shares my views on low carb diets - it's good for most, but it's not a dogma): https://www.youtube.com/watch?v=nxyxcTZccsE

Yankiwi
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Re: Treating Central Nervous System Inflammation

Post by Yankiwi »

What are your scientific or medical qualifications other than being avid readers?

inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

I have no qualifications whatsoever.

inflammatory_rls
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Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

Thank you for the advice, Frunobulax. By chance, do you have a source regarding vitamin D, B6, and B12 supplementation? I don't mean to suggest that you are incorrect, but I feel it would be prudent to consult a medical authority.

I took the probiotic, NAC, a-Lipoic acid, and curcumin. Unfortunately (but unsurprisingly), there was no acute or placebo effect.

I will watch the video you linked when I have the time, perhaps tomorrow or Saturday.

Yankiwi
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Re: Treating Central Nervous System Inflammation

Post by Yankiwi »

This terrible disease does drive us to do research and we often have time throughout the night. As Kiwis would say "good on you".

badnights
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Re: Treating Central Nervous System Inflammation

Post by badnights »

Inflamm wrote: My thread a couple days ago suggesting that Central Nervous System (CNS) inflammation causes RLS (viewtopic.php?f=5&t=10785) did not spawn as much discussion as I had hoped. Perhaps this was because the post did not provide practical guidance about what can be done to reduce neuroinflammation.
Good guess :) But there's another reason, too, at least for some of us, which is the energy required to properly read your post. For people to whom any science is unfamiliar, just reading it would be a slog. For people who want to fully evaluate it - well, I have a full-time job and it's all I can do to meet the requirements of my work hours, which have been reduced because I'm rendered so ineffective from this disease. When I see an involved post like yours that looks as if it might be well thought-out, I want to check it out properly. I don't want to say anything until I know what my own opinion is about it, and Lord where can I find the energy to evaluate it properly? (I used to have that much energy, when I first joined this board. I was always reading new papers then).

A lot of people try to pull together a theory from facts they have read, but extend those facts inappropriately into areas where they don't apply, willfully ignoring or enthusiastically missing or misunderstanding the information that counters their arguments. It all sounds good until you research it to check their reasoning (or unless you're already knowledgeable about the topic).

I'm a scientist, with a background in biology and decades of work in geology. (Geology is an interesting mixture of physics, chemistry, biology, cosmology, and their interactions that have made and are still modifying the earth, in all its complexity. It's not just rocks :) ). So I want to check every reference and challenge the thought process that led to every conclusion. That is, in fact, what I do for a living.

So - partly the lack of response to your post is the necessity to fact-check and review, or the necessity for readers to learn things they aren't familiar with, maybe things that are completely foreign to them; and the gross lack of the required energy to do so for many of us.

Your hunch is also partly right, though, for me anyway. I have to vet what I spend energy on, and determining whether the weight of evidence supports that CNS inflammation causes WED/RLS is not going to have any immediate practical benefit to me.

Now that I've wasted all my time saying that, I did read your advice and others' comments and have a few comments.
one study did find that RLS patients are significantly more likely to have small intestinal bacterial overgrowth (7). A study found that RLS patients treated with an antibiotic and then a probiotic containing L. acidophilus, Bifidobacterium, L. paracasei, and S. thermophilus showed improvement after a few months of treatment (8). The probiotic effective in treating MS referenced above included L. acidophilus, L. casei, B. bifidum and L. fermentum (6).
If you have SIBO, you don't want to take probiotics unless you are lucky enough to somehow know exactly which strains are overgrown and can therefore avoid them. The bacteria involved in the overgrowth are often bacteria that live in the lower intestine, where they are beneficial to us; the problem is that they have made their way into the small intestine and are living there, causing bloating and pain. Eating more of them will only hurt. If you have SIBO, you need to fix the cause of the SIBO first (sluggish peristalsis, damaged iliocecal valve, other?).
The supplements below are noteworthy in that there is significant evidence against their use.
Ineffective or Dangerous Compounds
Omega-3 and Vitamin D have been shown to fight inflammation in certain people and circumstances, but a recent year-long, double-blind, placebo-controlled trial found these supplements were ineffective at reducing inflammation (37).
You need to divide the ineffective from the dangerous, and I would also clarify in the subtitle that by "ineffective" you mean "ineffective at reducing inflammation - it may be effective at other wonderful things, indeed even essential to bodily health". You hardly want to seem to be recommending that people stop taking vitamin D or omega-3s.
I do not understand how Ashwagandha can both stimulate the immune system and reduce C-reactive protein levels, but that is why you should be careful when accepting medical information written by an untrained, anonymous person on the internet.
Clearly, there's hope for you :). I'm so glad you said it before I did. That's the kind of thing I was referring to above: "...extend those facts inappropriately into areas where they don't apply" etc.
Oozz wrote:My recommendation would be to only change one variable at a time. It I a very slow process, but it’s the only way to know what is and is not working.

I love your full post, Oozz. Re this quote, though: I gave up on changing one thing at a time a few years ago, when I realized I will not live long enough - the human lifetime is not long enough - to properly trial every change I make.

Finally, I agree with Frunobulax that you need to look at your total diet. No one knows the supplements we actually need. New essential micronutrients (like K2) are still being discovered; there is no way we know them all. The best way to get everything we need is to eat food, not the crap that lines our grocery store shelves. "Whole foods" - as little processing as possible, as fresh as possible, and grown or raised in as clean (pesticide/hormone/etc-free) environment as possible. If you're going to spend money on anything, spend it to get high-quality food.

I have had measurable benefits from dietary changes, but because I did it all at once, I don't know which was the most significant. Also I had SIBO but elminated it at teh same time the diet changes wwere taking effect. (The SIBO has returned and been -re-eliminated a few times since, I don't know the root cause.) The diet was: no gluten, no dairy, an appallingly low amount of carbohydrates all of which were vegetables, no added sugar, no refined oils, lots of coconut and avocado oil, organ meats once a week, fish three times a week (wild-caught, cold-water fish), and 9 cups of vegetables daily (3 cups each dark green leafy, colored, and sulfur-bearing). I dropped from 18-21 mg hydromorphone to 9 mg, but it was 3 months before the first drop, and the full benefit took 2 years. I try to eat that way still, but have slacked off on the amount of vegetables, and eat more carbs (critical after a heavy workout).
Beth - Wishing you a restful sleep tonight
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legsbestill
Posts: 551
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Treating Central Nervous System Inflammation

Post by legsbestill »

badnights wrote:
Fri Jun 05, 2020 7:55 am
The diet was: no gluten, no dairy, an appallingly low amount of carbohydrates all of which were vegetables, no added sugar, no refined oils, lots of coconut and avocado oil, organ meats once a week, fish three times a week (wild-caught, cold-water fish), and 9 cups of vegetables daily (3 cups each dark green leafy, colored, and sulfur-bearing). I dropped from 18-21 mg hydromorphone to 9 mg, but it was 3 months before the first drop, and the full benefit took 2 years. I try to eat that way still, but have slacked off on the amount of vegetables, and eat more carbs (critical after a heavy workout).
I too found my need for medication reduced when I followed a similar diet a few years ago. Maybe it does implicate inflammation as a culprit. Compromised will power means that I only intermittently manage to reinstate it and never for long enough.

I can relate to the drive of the op to identify implicating factors and pull together a unifying theory using as much information as can be accessed online. Over the years, however, I have been driven to the conclusion that the most significant information I can garner about my rls is available on this and other rls forums. Anecdotal evidence may be suspect but it is well (and usually very kindly) challenged in these settings and the most helpful information I have garnered - generally and in the treatment of my rls - has been on here. Either that or the impact of prolonged medication on my mental faculties makes the scrutiny of medical papers too much work for me now.

inflammatory_rls
Posts: 14
Joined: Fri May 29, 2020 8:20 pm

Re: Treating Central Nervous System Inflammation

Post by inflammatory_rls »

So - partly the lack of response to your post is the necessity to fact-check and review, or the necessity for readers to learn things they aren't familiar with, maybe things that are completely foreign to them; and the gross lack of the required energy to do so for many of us.
Thank you for taking the time and energy to reply. Years of very severe RLS will surely grind anyone down. A common theme on this board is that people join it full of optimism and energy, but become increasingly muted as treatment after treatment fails.
If you have SIBO, you don't want to take probiotics unless you are lucky enough to somehow know exactly which strains are overgrown and can therefore avoid them.
I don't really know anything about intestinal diseases, so thank you for that insight. I googled the symptoms of SIBO and am pretty sure I don't have it.
You need to divide the ineffective from the dangerous, and I would also clarify in the subtitle that by "ineffective" you mean "ineffective at reducing inflammation - it may be effective at other wonderful things, indeed even essential to bodily health". You hardly want to seem to be recommending that people stop taking vitamin D or omega-3s.
Yes, perhaps I should have been more specific. To be clear, none of the information I provided should be taken as medical advice. I just did a bit of introductory research on the supplements I listed. I fully recommend that anyone interested in any of the compounds above should do their own research and speak with their doctor. If your doctor proscribes probiotics or prescribes ketamine, you should listen to him and not me.
Finally, I agree with Frunobulax that you need to look at your total diet.
Yes, I do plan on researching dietary changes, and I appreciate you sharing your experience. Although my diet is not as healthy as yours, I think it is healthier than that of most people. I used to eat much more processed food. But despite the dietary changes I have made so far, there has been no effect on my RLS.

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