14 replies to this topic

[Clay201]

If you can provide some advice or information, I'd appreciate it.

 

For the past 20 years, I've had an undiagnosable disorder. Symptoms include fatigue, dystonia, tension headaches, restlessness, involuntary movements, frequent urination and thirst, dry skin, itching, fatty liver disease and what I sometimes call "psuedo-hypoglycemia." My blood sugar tests within normal range, but if I eat even a smidgen of carbohydrates, I stay hungry for days, I get that shaky low blood sugar feeling, and my tension headaches increase in frequency and severity. Even on a very low carb diet (which I follow strictly), these problems persist. Lab tests show elevations in liver enzymes (of course) and two indicators of inflammation: high C-Reactive Proteins (6) and high ferritin (over 1000 at last check).

 

(Some people with high ferritin have hemochromatosis, but I've been checked twice and I'm not one of them. Also, my iron levels are on the low side of normal. Hemochromo patients have high iron.)

 

I recently came across a thread on a different site. The initial poster listed a few dozen supplements, herbs, and medications he found useful for his chronic, severe, anxiety. He said they all reduced brain inflammation.

 

http://forums.phoeni...plements.18369/

 

He said that the strongest of the bunch was N-Acetylglucosamine. On the theory that brain inflammation was a factor in my disorder, I tried it. After various adventures with N.A.G., I can say that it is, in most respects, the most effective treatment I've ever found for many of my issues. Normally, my shoulders and neck are very tense; it's like having a vice screwed tight on my spinal cord. In my brain, there's an equivelant level of agitation/anxiety/restlessness. The N.A.G. reduces all of that by, say, 30%. It doesn't sound huge, but it's more relief than I've ever gotten from flexeril, baclofen, magnesium, Valium, anti-depressants, Kava Kava, Taurine, Green tea, or any of the other hundred or so supplements and meds I've tried. And btw, this list includes two back-to-back morphine shots I received after an eye surgery a few years ago.

 

But there are drawbacks. It wears off quickly. It mostly stops working if I take it for several days in a row. I'm not sure it technically counts as a sugar, but I can tell you that it's sweet to the taste and that it, ultimately, seems to aggravate my psuedo-hypoglycemia.

 

So I began mining the aforementioned thread for other supplements and meds that would reduce brain inflammation, but I've run into problems. You see, anything even mildly stimulant-ish will make my muscle tension/dystonia worse and give me severe headaches. I've had problems in the past with Omega 3 oils, THC, Cymbalta, caffeine, drugs used to treat RLS, etc. (all of which increase dopamine). I've also had problems with everything from Alpha Lipoic Acid and Lecithin to amino acids and milk thistle. I'm just ridiculously sensitive in this particular way. And many of the supplements and meds listed will likely press this button. Also, while I feel like the thread is quite useful, it's not the final word on brain anti-inflammatories. So before I decide what to try next, I'd like to ask the following questions:

 

1. Should N.A.G. be considered the strongest non-prescription anti-inflammatory that affects the brain?

 

2. What are your picks for the strongest brain anti-inflammatories?

 

3. How large of an anti-inflammatory effect could correcting my Omega 3/ Omega 6 balance have? If it could potentially be as strong as N.A.G., I might be willing to risk the headaches, at least long enough for a proper trial.

 

4. Is there any other mechanism, besides a reduction of inflammation, that might explain N.A.G.'s effectiveness?

 

5. If I'm understanding correctly, N.A.G. helps correct a leaky Blood Brain Barrier (BBB). Is this the case and, if it is, what other methods are available to tackle this problem?

 

6. I often crave fat after using N.A.G. Is it possible that stacking the N.A.G. with the correct fatty acids would increase its effectiveness?

 

7. There's some interesting research out there on luteolin as an anti-inflammatory. Is there any way to know how it would compare to N.A.G.?

 

8. I'm considering trying a full-on ketogenic diet like the one used by epilepsy patients. I hesitate to do something like that, but if I can't find any other good ideas, i'm probably going to go for it. Given that it can prevent seizures, it seems like it would be the strongest anti-inflammatory out there. Is there any way to compare the effectiveness of the ketogenic diet to the effectiveness of other anti-inflammatories? (I'm thinking probably not).

 

 

All responses are appreciated.

 

 

-Clay

[deeptrance]

My wild guess is that you have been "blessed" with a rare genetic mutation that somehow screws up a particular protein synthesis or some such thing, and since your condition is rare it will be nearly impossible to ever find out what exactly is going on. 

 

You sound pretty knowledgable so I'm just going to list a few more things you could look into, in case you haven't already:

 

curcumin

serrapeptase

adaptogens and other herbs with anti-inflammatory potential

 

I've been flooding my body with adaptogens for about 3 years and I rarely experience enough pain to warrant taking an over-the-counter pill like tylenol or ibuprofen. I used to need strong opiates and muscle relaxers in order to cope with pain, but the cure for that was mostly from a massive concussion that changed my spine and my brain in such a way as to make my pain levels bearable. But since then, adding the herbs may have contributed to additional improvement in how I feel. It's impossible to know, of course. Just for the heck of it, I'll list the herbs I take every day, but I won't get into dosages unless you request that for specific items. I take all of these as standardized extracts, and I buy them as bulk powders, then blend them together and eat by the teaspoonful!

ashwagandha

rhodiola

bacopa

schisandra

jiaogulan

eleuthero

gotu kola

magnolia

mucuna

ginger

cayenne

curcumin

pycnogenol

EGCG (green tea extract)

 

I've been taking glucosamine sulphate for about 25 years, but never tried NAG because of the cost.

 

It must be very frustrating to know that you could have a bad reaction to anything you try, and to have to cope with multiple symptoms that make it hard to treat any of them in isolation. 

Edited by deeptrance, 13 November 2014 - 06:50 PM.

[Darryl]

I originally came here to comment favorably about the OTC cough medication dextromethorphan, which appears to inhibit the main superoxide generating inflammatory enzyme, NADPH oxidase, at femtomolar concentrations, and then read this

 

I've had an undiagnosable disorder... fatty liver disease... on a very low carb diet (which I follow strictly)

 

You seem to have diagnosed yourself. High fat diets are a common way to induce non-alcoholic fatty liver disease and systemic inflammation in lab animals, as I've learned while delving into the whole metabolic endotoxemia story. The others are high-fructose diets and high-alcohol diets (which isn't NAFLD, granted, but the etiology is similar).

 

I can only imagine the state of your gut microbiota, intestinal permeability, intramyocellular lipids or insulin resistance. These keto diets are just tickling the dragon of metabolic syndrome and other inflammatory disorders (regardless of weight), and I'm thankful I don't have intractable epilepsy or metastatic cancer, the two conditions I'm aware of where keto may make sense.

Edited by Darryl, 13 November 2014 - 09:31 PM.

[Clay201]

I didn't begin the low carb diet until several years after the mystery disorder hit me. Since then, my symptoms have actually decreased somewhat, although how much of that can be attributed to the diet and how much to the other treatments I've tried it's impossible to say. When he diagnosed me with Fatty Liver, my hepatologist thought he'd found the source of my high ferritin. However, during a period where I lost some weight and my other lab numbers improved, the ferritin increased. The hepatologist said, then, that there must be another explanation for the ferritin numbers.

 

I've read that there are links between fat and inflammation, but I believe the issue is not dietary fat itself but, rather, stored fat. Since ketogenic diets are supposed to reduce stored fat, wouldn't they actually help the situation? There's a lot of evidence to suggest that epilepsy involves inflammation in the brain, so it would be pretty perplexing if the most effective treatment available *increased* inflammation. There's also a lot of evidence that ketogenic weight loss diets reduce insulin sensitivity and IS, of course, goes hand in hand with inflammation. As for my own insulin resistance, there's a lot of evidence that it has decreased significantly on my low carb diet. My blood sugar always tests normal, as I mentioned before. However, I still can't eat a potato, so I'm pretty sure it's still a serious issue. But maybe the problem is that I haven't gone far enough with it. The only time I've ever been in ketosis was for a few days when I first began the diet about 17 years ago and even that was pretty mild. If I switched to a full-on keto diet, maybe I'd see more benefits.

 

But even if you're right and I find a direct and indisputable link between my diet and my inflammation, I'd still be left with the fact that, whenever I deviate from a high fat / low carb diet, my headaches get much worse. Until I can deal with that issue, there's not a lot I can do in this area.

 

Oh, and I tried dextro a few years ago when I had a cough. It was pretty unpleasant - seemed to aggravate the restlessness somewhat - and didn't seem to help any of my symptoms (well, except the cough). What kind of dose does it take to inhibit NADPH oxidase? If a higher dose might do it, I'd be interested in giving it another try.

[Ames]

I've used NAG as my primary neuro anti-inflammation supplement for extended periods of time. I have departed from it at times, but it remains the strongest and thus overall most effective thing that I've tried.

 

In fact, it is so strong that I firmly hold that taking it every day would be extremely counter-productive. I get the symptoms of a blood sugar disorder if I take it too frequently or on the same day as consuming alcohol.

 

I recommend taking 750-1500 mg on one day and then waiting until the benefits wear off. Experiment with the dose. In fact, sometimes I don't feel the full benefits for a couple of days. My average time between doses is 4-7 days and I feel the full benefits during that time. I re-dose when I feel the anti-inflammatory benefits wearing off. More frequent dosing does, indeed, reduce the benefits even if no adverse side effects are perceived - in my experience.

 

I'd also be interested in an alternative, as I don't fully trust that there are no negative effects - though I've experienced a net positive benefit and only have suspicion of concomitant negative effects that may or may not be side effects of NAG. It would be hard to prove without studies. Though, when I need potent ant-inflammatory there is currently no real substitute. I don't know of anything else that exerts an anti-inflammatory response as potent or as long lasting. I wish that I did.

[Logic]

The 1st thing that pops up in Google is Prozac Side Effects?
http://www.drugs.com...de-effects.html
 
If the tiniest amount of carbs makes your blood  sugar spike it may be that there is an overgrowth of some nasty gut bacteria?
The symptoms also look similar to those I have seen listed as relieved by FOS, Inulin, Resistant Starch.
These are carbs that don't digest or get digested very slowly by good gut bacteria and cause an increase in their numbers.
Probiotics should kickstart the process.

http://www.google.co...tics probiotics

Candida is a NAD+ Auxotroph.
A bad infection could quite easily lead to low energy, and dystonia etc.
https://www.thefinch...dida-a-421.html
See Case history #4 amongst others.
This being the case things that increase NAD+, like C60oo (IMHO) and Nicotinamide Riboside should give instant relief, but you still need to get rid of the candida etc. if thats what is ailing you.

I would go with antibiotics before reading up here as your immune system is probably stretched to the limit already.:
http://www.google.co...biotics candida

Note that Virgin Coconut oil will expose all? lipid coated virii to your immune system, enabling it to sort them out.
You probably suffer from a number of opportunistic, chronic infections and acts as an easily absorbed alternate energy source to carbs.
It also is effective against Candida and a good number of other bacteria.

Other immune booster like Olive leaf extract and Astragalus would probably help as they boost the immune system.

 

Hope that helps.

 

[Logic]

Curcumin ameliorates the permeability of the blood-brain barrier during hypoxia by upregulating heme oxygenase-1 expression in brain microvascular endothelial cells.

and related posts here:

http://www.longecity...ndpost&p=723325

[niner]

Clay, because of the fatigue and on the basis of this paper, the fatty liver disease, I'd give c60 olive oil a shot.  I don't know if you have brain inflammation or not, but c60oo does get into the brain, and helps some kinds of inflammation.  A lot of us use it, and by virtue of improved mitochondrial function, it fixes a lot of things that are otherwise untouchable by today's medicine.   The vendor I've used is carbon60oliveoil.com. 

[lourdaud]

I have similar problems, this describes exactly how I feel: "Normally, my shoulders and neck are very tense; it's like having a vice screwed tight on my spinal cord. In my brain, there's an equivelant level of agitation/anxiety/restlessness."

 

Clay, because of the fatigue and on the basis of this paper, the fatty liver disease, I'd give c60 olive oil a shot.  I don't know if you have brain inflammation or not, but c60oo does get into the brain, and helps some kinds of inflammation.  A lot of us use it, and by virtue of improved mitochondrial function, it fixes a lot of things that are otherwise untouchable by today's medicine.   The vendor I've used is carbon60oliveoil.com. 

 

C60oo brought me massive relief when I first started it. This persisted for about a month or so, then the strong anti-inflammatory effects diminished.

One week ago I started MitoQ at 5 mg / day and I feel simply amazing: all my aches are gone, I can bend, squat, carry stuff etc with no joint pain at all!

Really hope the effects will remain this time.

[digifem]

Have you been checked for Epstein-Barr, reactivated and current?  Specifically the EBV Early Antigen Ab?  It does not always present with the typical fever, sore throat, etc.

 

It can cause all of your symptoms and is often associated with elevated ferritin levels.  Here are a couple papers related to the EBV/ferritin correlation: 1, 2, 3

 

It would cause inflammation, liver issues, and people often experience neurological problems.

 

Also, often people with EBV develop adrenal insufficiency (fatigue) as a result.  This would cause the "pseudo-hypoglycemia" symptoms.  Are you seeing an MD or DO?  A DO will often be willing to give you a 24-hour saliva cortisol test to check for this.  (AM blood cortisol test is not sufficient)

 

 

Edited by digifem, 19 April 2015 - 02:24 PM.

[Kalliste]

Have you tried fasting, Clay?

[Nick Kyz]

from what I can tell the majority of your symptoms are mediated by cytokines. Now why your body releases so many cytokines I have no idea. It could be some metabolic problem, maybe it's mediated by oxidative stress, so mitochondrial dysfunction? In any case, NAG happens to be a potent antagonist of many pain inducing cytokines. Curcumin is too. Vitamin C to a lesser degree. So that's probably why you feel better. But whatever is causing those cytokines to be released, you're probably not resolving it.

[sativa]

If you can provide some advice or information, I'd appreciate it
....
All responses are appreciated.
-Clay

Hi Clay,

Have you tried a period of drinking water kefir? I highly recommend it - its an excellent probiotic and helped me significantly when recovering from my metabolic dysfunction likely involving stress and poor environment/habits.

It will rebuild and fortify your gut flora, and with a healthier gut flora, this will provide a myriadd of health benefits.

[Logic]

Have you been checked for Epstein-Barr, reactivated and current?  Specifically the EBV Early Antigen Ab?  It does not always present with the typical fever, sore throat, etc.

 

It can cause all of your symptoms and is often associated with elevated ferritin levels.  Here are a couple papers related to the EBV/ferritin correlation: 1, 2, 3

 

It would cause inflammation, liver issues, and people often experience neurological problems.

 

Also, often people with EBV develop adrenal insufficiency (fatigue) as a result.  This would cause the "pseudo-hypoglycemia" symptoms.  Are you seeing an MD or DO?  A DO will often be willing to give you a 24-hour saliva cortisol test to check for this.  (AM blood cortisol test is not sufficient)

 

What do most of the virii we're afraid of, have in common? (There are always exceptions)
A lipid bi-layer that disguises them to the immune sys.

Flu, AIDs, Covid, Epstein Barr, etc-etc.  The list goes on and on!, are all lipid coated.
Do a search of all the virii you're scared off.
No inoculation available. No cure. etc.
But Lipid Coated for most of the list.

This is kinda how I try explain it locally if asked:

A Lipid Coated Virus virus gets into your system looking for the closest cell to infect.
It gets past your immune system thx to a lipid layer that 'disguises' the virus as something benign or useful.
IIRC disguised as a nutrient came up somewhere.  (This is all very IIRC... haven't been active here in ages) 

So what would happen if you could disrupt that virus's lipid layer the moment is got into your system..?
1st your immune sys is going to see it.
Then; it also cannot infect cells:
There's a merging of the viral lipid and cell layers here, to get the virus in... That cant happen.
So the virus is fucked
Whether it gets to a cell or not.
IF... you could disrupt that common lipid layer...

So; What might disrupt it?  What could we take...??  

Coconut Oil:  Lauric etc! acids.
BHT.
There are others? Rosmarenic Acid IIRC?
Links to my previous research are here somewhere.

You cannot patent a molecule that already exists in nature, so there's no money in it...
Unless you're looking for a molecule you can change just a tiny bit and patent...
So, pilot studies..
IIRC 

Here's the kicker:
Where did the virus come from?
That infected cell/s that turned into a virus factory and 'popped'
Disrupting lipid layers has nothing to do with taking out infected cells.
You have to get to the contents asap WHEN the cell pops.
And some virii lie dormant in cells for ages.  I don't recall the numbers, but surprisingly long.
So you gotta have lipid layer disruption on tap, 24/7

If it's made with oil here, it's made/cooked with Coconut oil. (Salads with Olive oil)
Floating coconut oil on your morning coffee or tea works too.
Keto Breakfast I call it.

I do keto lunch etc too if I feel under the weather.
I add D3 in winter (skin in darkness). Your immune sys uses up D3 in the killing of virii, IIRC.

2 in 100s of examples:
Thx to all the previous evidence, Covid came and went without me batting an eyelid.
I socialised with neighbours etc sharing food etc. Shopping centres with everyone's noses sticking out of their masks, mine included (cooler). etc (This is Africa...)
I just wasn't scared.
I felt under the weather twice, for maybe an hour or 3. 
I made Keto coffee immediately and upped my coconut oil and D3 intake and was fine in no time.
No idea if either of the 2 incidents was Covid or not.

I haven't had a fever blister since I started.

Coconut Oil with any (non lipid coated) virus:
Stops the other low level chronic infections we all have from taking advantage.
I cant help wondering if 2 or more different virus species, infecting the same cell, doesn't end in cancer..? (IIRC thing again)

Imagine for a moment you can take all those lipid coated virii off your "Scary" list...
How do you feel now?

(I hope I recalled everything correctly. )

Edited by Logic, Yesterday, 04:42 PM.

[Logic]

..an extract of the fern Polypodium leucotomos (PLE) to partially inhibit the production of cytokines showing a Th1 pattern (IL-2, IFN-gamma and TNF-alpha) in human PHA-stimulated peripheral blood mononuclear cells. The percentage of inhibition was 24% for IL-2, 72% for INF-gamma and 53% for TNF-alpha. With regard to Th2 cytokines, the addition of PLE resulted in a significant increase (33%) in IL-10 production. Surprisingly, the production of the inflammatory cytokine IL-6 was completely abolished (100% inhibition) by PLE at all doses tested.
https://www.longecit...ndpost&p=762196