Brain inflammation

[Rufous McKinney]

Most resveratrol actually comes from Japanese Knotweed roots

Interesting...a Polygonum! Reservatol is the thing in wine: recommendation therefore drink wine (I don't).

Japanese knotweed is a seriously bad invasive species outside its native range so watch out for that. Don't plant any.

 

[Rufous McKinney]

At least TCM is quite safe and not that expensive, if one thing doesn't work then you can easily try something else

I am very pleased to have found so much help for reducing symptoms. TCM is not curing the illness.

I would not describe it at all as guessing. Its trying things that address certain suites of symptoms.

Unfortunately it is rumored hard to find experts. I was lucky the universe provided me with an outstanding one six blocks away. I have only seen one person who helps me consistently and I don't feel like it was a guessing game.

 

[Rufous McKinney]

Just questioning the "mysterious ancient knowledge of the body" thing.

Yes its obvious your very bothered by this approach so its obviously not for you. I'v e looked at the books and its a very exacting "science". They don't consider it mysterious, we do.

 

[Hip]

I'v e looked at the books and its a very exacting "science".

I have looked at those TCM books also (many decades ago, not recently), all that stuff about the "six excesses" of wind, cold, heat, dryness, moisture and heat that TCM considers to be the explanation of diseases.

All very quaint, but have you come across any scientific papers that have demonstrated any validity to these concepts, or have mapped these 6 conditions to modern scientific understanding of the body?

Chinese scientists are usually quite interested in their country's traditional heritage of healing techniques, and will often investigate them scientifically. Thus if there were some scientific validity to the "six excesses", it's likely that Chinese scientists would have found it. But I have seen no papers that demonstrate scientific validity of the "six excesses".


Europe had its own similar system of the "four humors", which date back 2,500 years to Ancient Greece. But just because they date back to antiquity does not necessarily mean they carry any scientific validity. Nobody with modern scientific understanding of disease would suggest that disease is caused by an imbalance of the four humors, as used to be believed.


But anyway, I am pleased that you have found some Chinese herbs that help reduce your symptoms.

 

[Rufous McKinney]

I am pleased that you have found some Chinese herbs that help reduce your symptoms

Thank you! I am making some further adjustments at the moment which are encouraging.

From visiting this place, and observing the immensely complex swarm of Afflictions and variations of theme's, we can see how difficult it is to actually design the proper kind of study using classic science. Plus our whole PACE mess.....For instance, my one body cannot be duplicated. So N= 1 is always the case. I experienced a proof of not placebo, when I first started and "gave up" mentally that it would cure the rash (really ugly bad). Gave up around month 4, but continued chinese herbs due to it helped me feel better in other ways. Oh well, rash still. After ten months: it disappeared over the course of about five days and never came back. Thank you Chinese Herbs your are wonderful. I can be seen publically again.

We see here: remarkable differences in dosages, supplement results, particular sensitivities. Somebody ecstatic about that salad, another poisoned by it. Somebody helped with a pill, 12 others not.

So I welcome well designed studies to validate things. All for it. And meanwhile: I have to stay alive somehow and so between NOTHING from the Doctor and SOMETHING: I picked something.

 

[toyfoof]

I have been wondering, because I see this all over the place, and it’s even right in the name of our disease: how does one know that one’s brain is inflamed?

Are there specific symptoms that we know come from brain inflammation? Or are we guessing when we say this because it feels as if our brains are inflamed (I know this feeling, so I get it).

 

[Celandine]

I don't think there is any common way to know for sure that you have brain inflammation. This article talks about the novel techniques used by Jarred Younger and some Japanese researchers who have very recently first detected this inflammation in ME patients. This is only at a research level now, so no way to get tested:
https://www.healthrising.org/blog/2...mation-found-chronic-fatigue-syndrome-me-cfs/

 

[toyfoof]

Yes, thank you, I’ve been following that research with interest. I think it will be a breakthrough for us to be able to get this imaging and have proof.

My curiousity (and forgive me if I’m veering wildly off topic) is how we, as patients, are able to identify this inflammation and subsequently seek remedies. What symptoms do you have that tell you your brain is inflamed?

The link must be there pretty strongly for “encephalo” to make it into our disease name.

Part of why I’m asking is because I struggle with how to explain symptoms to doctors, and I don’t think they’d accept “brain inflammation.” So I’m wondering what specific feelings (tingling? Pain? Pressure? Etc) people have that lead them to think “brain inflammation.”

 

[ljimbo423]

What symptoms do you have that tell you your brain is inflamed?

This is a quote from Jarred Younger's talk at the OMF symposium last September-

He basically says the symptoms are fatigue, malaise, memory formation, psychomotor slowing and general motor impairment, how you feel in your body and also anxiety.

What's interesting is these regions are regions that we know mediate the sickness response. These are not just random regions. It's not the visual stuff. It's not how you smell. These are regions that mediate sickness response.

We see elevated lactate in the cingulate. This is where the malaise comes from, the suffering component and the fatigue. The hippocampus has elevated lactate in ME/CFS, which would suggest there may be problems with memory formation.

The thalamus is the switchboard for the entire brain, all of the sensory information is coming through there. We see elevations in the cerebellum, which could suggest there's psychomotor slowing and general motor impairment.

Then we see elevations of lactate in the insula and this controls a lot of how you feel in your body and also anxiety. These key sickness response regions, we're seeing elevated lactate in them, which is exactly what would happen if ME/CFS is a neuroinflammatory disorder.

 

[Rufous McKinney]

how to explain symptoms to doctors

For at least 15 years I've called this: Brain Inflammation. Cause thats entirely what it feels like to me.

All the tissue in my body swells up every night, all around the eyes, sinus, palette...ears, teeth, this entire area. So all this is swollen and swollen is inflamed. Swollen is just FOR SURE happening a few microns away from organ's I can feel are directly are "swollen". So its all squeezed. And my cervical spinal area is often and frequently squeezed and swollen and therefore: inflamed.And I've described that for 30 years now.

So from Australia one of the studies found the higher brain temperature (inflamed) where all the pink lactate had accumulated (ME symptom). So then all these very important neurological control features are there, Baking like Alaska.

To me I don't get how this does NOT make sense.

 

[toyfoof]

@Rufous McKinney
It totally makes sense to me. I just have had experience with doctors who don't take my word for it. Encephalitis has to be proven with a diagnostic test (lumbar puncture, maybe,or Younger's new tools) and since they don't have this for me, they don't like to use the word.

What you and @ljimbo423 are my direct experiences as well. But while Younger and others have found this evidence in other people, it has not been found in me. Because we're not testing it in the general public yet. So I never feel 100% like I can say I have it. (My official diagnosis is CFIDS, fibromyalgia, and migraine).

It's just semantics, maybe, but after being laughed at by a neurologist when he heard Encephalomyalitis and had other doctors tell me there is no way to know where my inflammation is, even though I have blood tests that show it (CRP), and I've had tests showing elevated lactate but again there's no way of showing where, I've given up on trying to pinpoint it and just focus on the symptoms of pain, swelling, weakness, etc.

 

[toyfoof]

Actually, now that I think of it, edema (swelling) was shown on my cervical MRI in the C5-C7 area, and that has been noted by my current doctors. Who seem very confused by it! And I'm like, um, I'm pretty sure I've been telling you that this is how I feel for years. It does seem to be helping them believe me. At least.

 

[ljimbo423]

So I never feel 100% like I can say I have it. (My official diagnosis is CFIDS, fibromyalgia, and migraine).

I don't feel like I can say I have brain inflammation with 100% certainty, maybe 95% but I don't have to prove it to doctors though.

It's just semantics, maybe, but after being laughed at by a neurologist when he heard Encephalomyalitis and had other doctors tell me there is no way to know where my inflammation is, even though I have blood tests that show it (CRP), and I've had tests showing elevated lactate but again there's no way of showing where, I've given up on trying to pinpoint it and just focus on the symptoms of pain, swelling, weakness, etc.

I don't know of any way you could prove to your doctors that you do have brain inflammation until the tests become available to the public.

Actually, now that I think of it, edema (swelling) was shown on my cervical MRI in the C5-C7 area, and that has been noted by my current doctors. Who seem very confused by it!

That's really interesting that you have that swelling basically rate at your brain stem! Maybe the more you confuse them, the more they'll pay attention to and believe you.

 

[toyfoof]

I don't feel like I can say I have brain inflammation with 100% certainty, maybe 95% but I don't have to prove it to doctors though.

This is how I feel too. I guess I don't have to prove it to doctors, I just want to get the best treatment and I feel that BRAIN INFLAMMATION is something they would take seriously and want to treat.

I don't know of any way you could prove to your doctors that you do have brain inflammation until the tests become available to the public.

Yeah.

That's really interesting that you have that swelling basically rate at your brain stem! Maybe the more you confuse them, the more they'll pay attention to and believe you.

I mean, it seems weird to me that they are flummoxed that I have swelling in my neck. I'd think they'd be gratified to have some real information to work with. But no one seems to be making those connections yet. It's strange.

 

[toyfoof]

@Jessie 107 I'm sorry to derail your thread! I find it very interesting and I'm also interested in how we can treat brain inflammation. I wish I had more advice to offer!

 

[Rufous McKinney]

I just have had experience with doctors who don't take my word for it

My sympathies for how hard it is and challenging to communicate with these folks. I'd say I"ve never graduated to the opportunity to even state: my Brain is inflamed, to my current doctor. Mine would likely believe me, but he is not a typical GP (probably why I like and prefer him to the Stare-ers).

 

[Rufous McKinney]

I mean, it seems weird to me that they are flummoxed that I have swelling in my neck. I'd think they'd be gratified to have some real information to work with. But no one seems to be making those connections yet. It's strange.

Doctors are individual Sapiens. They take classes, get told to work real hard and never sleep; by the time you;ve graduated from all that: how could you possibly have absorbed "all this".

If your interested I got biomagnets, and I apply them to the cervical area at the back of my neck and about 1/2 an hour later typically notice much swelling has subsided and less pain, there and overall. Typically I forget I put on the magnets, so this is often a placebo-proof experience.

I previously wrote here, and then erased, a random comment that as they collect diagnostics at the research study centers, we still sit here: waiting. Without a diagnostic. With made up names. With bad rumors continuing to be spread about us.

 

[ljimbo423]

This is how I feel too. I guess I don't have to prove it to doctors, I just want to get the best treatment and I feel that BRAIN INFLAMMATION is something they would take seriously and want to treat.

The only reason I said I don't have to prove to a doctor I have brain inflammation is because I don't have one.

It makes sense that you want the the best treatment you can get and proving you have brain inflammation should get there attention.

 

[Celandine]

I think the OP was asking about herbal/non-prescription treatments for brain inflammation specifically BECAUSE we can't prove it to doctors. Like most things with this illness we have to take it into our own hands. PEA sounded like one of the most promising avenues and unlike many herbal choices, it doesn't have side effects like being diuretic or lowering blood pressure. That's the trouble with herbals, I find. I don't think there are any miraculous prescription anti-neuroinflammatories out there anyway, though I could be wrong on that. There isn't a lot a doctor could do even if he/she did believe you.
https://www.healthrising.org/blog/2...-fibromyalgia-chronic-fatigue-syndrome-mecfs/

This is another paper listing some natural anti-neuroinflammatories
https://www.frontiersin.org/articles/10.3389/fphar.2018.00548/full

 

[Rufous McKinney]

This is another paper listing some natural anti-neuroinflammatories

Wow: so this info just impressed the heck out of me. Thank you so much for linking to it. I take several of these herbs currently as I am doing Chinese Traditional. I've made some recent adjustments and I am experiencing some further gains, plus adding just better Pacing and some gut fixes that are helping. (chinese herbal gut fix also).