Could this be IT ? - brain inflammation

[Jo86]

I know you're brainfoggy as hell, we all are ! But please read this, it might give you something really important to work with.

Please give it a read, the whole thing, I promise it isn't that long.

http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/

I'd read all about mast cells and histamine and allergic stuff and all, but never about mast cells in the brain and inflammation up there; all my reading was focused on chronic infections and the gut so far.

 

[JES]

Theoharides has an own formulation, NeuroProtek, which you can buy to see if it helps with any symptoms. While it's an interesting hypothesis, I remember reading about this idea over five years ago. Curcumin and luteolin are easy to obtain and test for anyone, but I have yet to hear anyone getting cured or improving remarkably from taking them. It does seem obvious there is some brain inflammation going on in ME/CFS, but how to treat it is another matter, both curcumin and luteolin made me worse.

 

[Jo86]

Theoharides has an own formulation, NeuroProtek, which you can buy to see if it helps with any symptoms. While it's an interesting hypothesis, I remember reading about this idea over five years ago. Curcumin and luteolin are easy to obtain and test for anyone, but I have yet to hear anyone getting cured or improving remarkably from taking them. It does seem obvious there is some brain inflammation going on in ME/CFS, but how to treat it is another matter, both curcumin and luteolin made me worse.

I can only look at it empirically, as there are dozens of potential explanations in theory for feeling the way I've felt for now 13 years and the way thousands of people feel. The chronic infection was a major and very convincing route to try out, took a ton of antibiotics for a while, never changed a thing. The adrenal fatigue was another, gave that a shot with treatments, nothing. Earlier there was the whole detox thing: 'my body is full of accumulated heavy metals', do a hair tissue mineral analysis and then treat with coffee enemas and regular physical exercise and supps. Nothing.

Beyond the GI symptoms with food intolerances, it seems the other area of the body that's really concerned would be...the brain. I mean "brainfog", cognitive impairment, memory or sleep problems. As said in the article the brain (hypothalamus etc) is responsible for lots of that. I do feel like... I guess my brain is ... loosely connected in the cranium, like it just won't function properly. The brain has to be one of the major concerned organs in this whole bizarre experience.

Is intranasal therapy common in the US or other places ? It seems extremely rare in France, if not nonexistent.

 

[JES]

The brain has to be one of the major concerned organs in this whole bizarre experience.

Yep, no disagreement here. The thing is, CCI, a metabolic trap in brain cells, gut bacteria and hundreds of other factors could be the cause of brain inflammation. If it was all about stabilizing mast cells, NeuroProtek should at least provide significant improvement.

 

[Hip]

Curcumin and luteolin are easy to obtain and test for anyone, but I have yet to hear anyone getting cured or improving remarkably from taking them.

I read the article, and it talks about intranasal administration of substances to reduce the inflammation in the hypothalamus:

Intranasal administration of select flavonoids may reduce inflammation in the hypothalamus and correct the central pathogenesis of ME/CFS

Theoharides mentioned another intranasal option -microvesicle trapped curcumin – that is emerging. Curcumin is perhaps the most scintillating of all the natural anti-inflammatories, but bioavailability has been a challenge.

So it might be worth snorting a bit of curcumin powder into the nose, to see if that has any positive effect (I would not snort curcumin which contains piperine though, as the peppery piperine will probably sting in the nose).

 

[Wishful]

I agree with the part about oversensitive microglial cells, since that matches my observations. The mast cell part seems purely speculative at this point, so I'll wait until someone actually confirms it.

Luteolin didn't have a noticeable effect on me, and curcumin makes my symptoms much worse.

 

[Stretched]

Thanks for posting this article. His premise sure sounds and ‘feels right‘ to me. I’m ~30 years PWC and last year sprouted peripheral neuropathy, which is very painful in my feet. Further, I fell bad last Sept, 2019, and had a concussion. I’m now suffering post concussion syndrome. It’s symptoms are like a CFS crash with nausea and more brain fog. I think all this is interrelated; all symptoms are now compounded, ugh=&.

I sent the article to my neurologist: “If you buy into this, as I do, can you think of any medications that might treat my brain?” If he answers I’ll post his reply. (He’s a young type A, in high demand, who also believes MECFS is caused in the brain.) Fortunately, he’s been supportive with lots of blood work and image testing - unusual!

 

[Hd-x]

I'd read all about mast cells and histamine and allergic stuff and all, but never about mast cells in the brain and inflammation up there; all my reading was focused on chronic infections and the gut so far.

ME/CFS and MCAS have much overlappings.
Brain fogging in MCAS happens, because off uncontrolled release off Cytokine, if untreaten it can cause a thing called "Cytokine-storm" in the brain and that can be seriously dangerous,
Mastcells can also release uncontrolled Serotonin amounts which can further cause even more psychiatric and neurological problems. Some MCAS subgroups-> exspecially the so called "ZNS-Phenotypes" can´t usually tolerate any SSRI and such medicine can in such cases be very dangerous.
There is also a "Fibromyalgia-Phenotype", such MCAS sufferers have exactly the same symptoms like Fibromyalgia sufferers, but it still isnt Fibromyalgia and just MCAS triggered "wide spread pain syndrom".

Histamine may be the most common known thing, but it isnt that big problem, because it can in most cases be controlled with Antihistaminka, the other mastcellmediators are far more difficult to detect + controll.

I also have Brain fogging and had whole bloodworks done with Cytokine/Interleucine, VEGF and so on, it showed high TGF-ß, IL8, IL4, IFN-g, IGG2, TH1 + Th2 increased with Th2 shift dominance, somewhat "common" for disorders like MCAS and ME/CFS.

 

[wigglethemouse]

Mastcells can also release uncontrolled Serotonin amounts which can further cause even more psychiatric and neurological problems.

Do you know if mast cells can release enough serotonin such that when the blood is measured you could have high levels. I've not seen much written on this in MCAS but it would also provide a good explanation for osteoporosis in MCAD?

 

[wigglethemouse]

If you are looking for something to take up the nose to possibly calm mast cells you could look at Nasalcrom. I seem to remember some posts here on PR talking about it.
https://www.amazon.com/NasalCrom-Na...wds-bia?cv_ct_cx=nasalcrom&keywords=nasalcrom

 

[Hd-x]

Do you know if mast cells can release enough serotonin such that when the blood is measured you could have high levels.

Yes, there are papers around this - but mostly systemic Mastozystose (SM) releated, but MCAS and SM are very similar, the primary difference is that tryptase is < 20 in MCAS (in some cases in the "normal range") and usually >20 in SM, some differences also in KIT mutations and CD117 counts as well.
I also dont tolerate any SSRI and use a dual Antihistaminica/Serotonine antagonist (Cyproheptadine) for treating MCAS.

Had still little success with nasal sprays (Ketotifen) , oral sodium cromolyn helps a little bit, but high doses needed, so I guess with cromolyn spray it would obvisously the same.

Because off milk allergy I avoided for years all milk products and thougt this would be a good idea. Few month ago, I tried lactosefree joghurt in small amount together with some curcumin. It may sound stupid, but too my surprise - doing so improved my food allergies a lot, I am not sure -but I guess my gut microflora has missed some off these benefical milk bacterials and was "unbalanced". (as well "leaky gut" + high Zonulin)

 

[Stretched]

...doing so improved my food allergies a lot, I am not sure -but I guess my gut microflora has missed some off these benefical milk bacterials and was "unbalanced". (as well "leaky gut" + high Zonulin)

If you are looking for something to take up the nose to possibly calm mast cells you could look at Nasalcrom. I seem to remember some posts here on PR talking about it.


@wigglethemouse , @Hd-x I’m in tandem with some of your above expressed symptoms. I will try cromolyn, again - used it for asthma in the past. Curiously, have you tried probiotics and or Omega 3’s, and if so any success?

 

[Stretched]

I know you're brainfoggy as hell, we all are ! But please read this, it might give you something really important to work with.

Please give it a read, the whole thing, I promise it isn't that long.

http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/

I'd read all about mast cells and histamine and allergic stuff and all, but never about mast cells in the brain and inflammation up there; all my reading was focused on chronic infections and the gut so far.

I don’t know about you other guys but my crashes and feel-bad days coincides with the feeling of increased adrenaline and or cortisol flow in my gut. Even reading or working mentally causes this affect. Then symptom!

Consider the author’s premise: “Theoharides’ mast cell ME/CFS hypothesis begins with a hormone – corticotropin releasing hormone (CRH) – which is released by the hypothalamus during stress and which has been implicated in a series of neuroinflammatory disorders... “ Doesn’t this beg the question - is there a way (drug?) to minimize or stop the flow of adrenaline and/or cortisol? If so, this may very well lead to cessation of symptoms. @Hip, have you come across anything on this?

 

[Hip]

@Hip, have you come across anything on this?

The Cortene peptide treatment of ME/CFS focuses on the corticotropin releasing hormone system.

 

[Stretched]

The Cortene peptide treatment of ME/CFS focuses on the corticotropin releasing hormone system.

I’ll look it up. If facile for you please suggest links. Thanks

 

[Hip]

I’ll look it up. If facile for you please suggest links. Thanks

The Cortene treatment is going through clinical trials. Cort has written some blogs on it, and there are some threads on the ME/CFS forums about it, see here for example. Cortene's website is here.

 

[Stretched]

The Cortene treatment is going through clinical trials. Cort has written some blogs on it, and there are some threads on the ME/CFS forums about it, see here for example. Cortene's website is here.

Great stuff to read! I’m glad I asked you; shame on me for not being aware of this=&. I sure am curious about the adrenaline connection and the possibility of a reuptake accelerator if such a thing exists.

 

[Hd-x]

I’m in tandem with some of your above expressed symptoms. I will try cromolyn, again - used it for asthma in the past. Curiously, have you tried probiotics and or Omega 3’s, and if so any success?

I tried some probiotics that should in "theory" be fine for gut + ME/CFS, but was still getting constipation. At this point I started to think about trying joghurt and it was (for me) a good thing. And yes, I also use Omega 3 Fish oil, but didnt notice much effects.

 

[Stretched]

I tried some probiotics that should in "theory" be fine for gut + ME/CFS, but was still getting constipation. At this point I started to think about trying joghurt and it was (for me) a good thing. And yes, I also use Omega 3 Fish oil, but didnt notice much effects.

An integrative doc (MD) got me to take 5 x 1000mg O-3‘s twice a day a few years back. It cured my lower gut pain in ~3 months. I lowered the dosage after awhile but will try again as I it’s supposed to be anti-inflammatory. Re constipation, I’m using pain pills which cause a real problem. Magnesium caps, 500 mg x 2 daily, got things back to normal.

 

[Hd-x]

@Stretched
Thank you a lot for yours dosing information.
I took 1 teaspon Fishoil like the bottle said and have not looked how much mg it was.
I checked it out and it was still 1000mg, this may explain why it hasnt helped much.
Will increase the dosage like you recommend.

I’m using pain pills which cause a real problem

I have not tried it yet and dont know if it works or helps, but there are some studies around herbs like for example rose hip (Litozin) for reducing pain and lowering some inflammation:
https://www.sciencedirect.com/science/article/pii/S1063458408000654
https://www.rosavital.com/en/studies/ (it is animal study, have not found somewhat similar human study)