Why ME/CFS is a result of the histaminergic system in overdrive

[Sundancer]

interesting thread,
I'll add my personal two cents.
When I started B12 ( almost 3 months ago now) i pretty fast got what I tend to think of as histamine reaction, but it may well be broader then that as apart from itching allover, it includes shortness of breath, brainfog , weightloss , hot flushes and enlarged lymphenodes, general deterioration, and much faster PEM ( i mean, my exercise threshold goes waaay down).

Then I bought me a bottle of bifido infantis, knowing this can be of help in these issues.

the strange thing is, it did help for the itching etc. But also, it seems my exercise threshold is decidedly higher then before.

is that the B12 beginning to have influence? Or the bifido reducing mastcellissues?? ( or both? or something else, this illness is like a mathematical equation with too many unknowns)

ah well, maybe I'm talking nonsens here, head is still not as good as I would like.

 

[Learner1]

I broke out in hives from methyl B12 sourced from bacteria grown in a corn medium, and have done well once found some not grown in corn.

 

[Sundancer]

I broke out in hives from methyl B12 sourced from bacteria grown in a corn medium, and have done well once found some not grown in corn.

could you tell me what you use? Changing brand may be a good idea...

 

[pattie]

For me this theory makes sense. I believe that, for many of us, mast cells are involved worsening our symptoms. In my case, I’m having some success using antihistamines and mast cell stabilizers.

My symptoms are: Fatigue, brain fog, urinary problems (interstitial cystitis), paresthesia (altered sensations on my hands), pain (specially on my back and armpits), sore throat, intense rhinitis, eye pain, digestive problems (bloating and nausea), hair loss (telogen effluvium), POTS, severe anxiety and sleep problems.

Mast cell activation can cause all of these symptoms (including brain fog, pain, hair loss and sleep problems).

I attached some interesting articles. The titles are:

- “Acute stress increases permeability of the blood–brain-barrier through activation of brain mast cells”

- “Regulation of plasma histamine levels by the mast cell clock and its modulation by stress”

- “Neuropeptides CRH, SP, HK-1, and Inflammatory Cytokines IL-6 and TNF Are Increased in Serum of Patients with Fibromyalgia Syndrome, Implicating Mast Cells”

- “The role of mast cells in functional GI disorders”

- “Mast cell degranulation distinctly activates trigemino-cervical and lumbosacral pain pathways and elicits widespread tactile pain hypersensitivity”

- “Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders”

- “Extracellular ATP mediates mast cell-dependent intestinal infammation through P2X7 purinoceptors”

- “The “missing link” in autoimmunity and autism: Extracellular mitochondrial components secreted from activated live mast cells”

 

[vision blue]

I haven't read through all the replies to your post, so may have been said many times over - sorry if that's the case.

One thing you may be picking up on is that a subset of folk diagnosed with CFS may have a mast cell disorder. (Whether that means a mast cell disorder caused the CFS, made one more likely to get CFS, or is misdiagnosed as CFS because of overlapping symptoms, I will not at this time render an opinion on). Mast cell disorder would be improved by antihistamines and may be improved by mast cell stabalizers or even tyrosine kinase inhibitors.

One clarification is that you said antihistamines in normal doses won't do anything. Keep in mind the differences between classes of antihistamines. The first generation antihistamines do cross the blood brain barrier and will do so at ordinary prescribing doses. You can still find these, but you have to ask specifically for them. If you can't get a doc to prescribe, just say you can't stop itching since they are known to help with itching and some of the second and third etc generation ones do not. Benadryl incidentally is a first generation antihistamine and as you know avaiailable OTC, so if one is happy with that one (I'm not - makes me sick), then no problem. The later generation antihistamines were especially designed to not have sedating effects - read does not cross blood brain barriers. Note the antihistamines are from different classes too, so one shouldn't assume you can just sub one for another.

Another thing to keep in mind is that H-1 blockers have other effects. They tend to be anti-inflammatory. And i suspect they also work some on H-2 even though they are supposed to be specific to H1 (perhaps they just work on H2 type symptoms). So there could be other reasons one feels good on antihistamines.

I like your emphasis on every little thing sets off someone with CFS since that doesn't get enough attention. I have that. But of course we don't know the direction of causility. YOu mention catecholamines, another fave topic of mine, but we don't know what causes what- direction could be other way around. Incidentally I also have an autoimmune disorder but am convinced that I have CFS as well even though the uninformed docs still use CFS as a wastebasket category).

I will start a poll relevent to histamine (indirectly) since i've been interested in basophils.

 

[vision blue]

p.s. I forgot to add that my overwhelming fatigue etc. was started following allergic/immune reactions to dental work.

(I would not be surprised if i had an early mid mast cell hypsersensitivity since i've had dermatographia since age 10, though again following dental work..hmmm.. and that's mast cell overactivation in the skin altho usually that does not mean one has it sysmtemically. and them mabye the assault of 13 teeth flooded with Dycal, when i'm allergic to sulfonamide, plus eguenol, acrylates and formaldehyde, was just too overwhelming)

 

[redo]

In the charts above, there isn't the "dead feeling after exercise" as listed in the IOM report.

This article goes through many possible explanations for PEM:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639

The charts above were posted to show that mast cells have many tricks up their sleeve, not just releasing histamine. I haven't had the energy to sign in to these forums for some months. But if you've read the article you link to, is their "main PEM immune hypothesis" (if they have one) irreconcilable with what mast cells can do?

The charts were not posted to show all and everything of symptoms. The symptoms of MCAS happens to be on the right side, but MCAS is a yet to be fully understood disease, and if mast cells play a central role in ME/CFS then I expect that it would be in a somewhat different way than in how MCAS is currently defined.

 

[redo]

For me this theory makes sense. I believe that, for many of us, mast cells are involved worsening our symptoms. In my case, I’m having some success using antihistamines and mast cell stabilizers.

My symptoms are: Fatigue, brain fog, urinary problems (interstitial cystitis), paresthesia (altered sensations on my hands), pain (specially on my back and armpits), sore throat, intense rhinitis, eye pain, digestive problems (bloating and nausea), hair loss (telogen effluvium), POTS, severe anxiety and sleep problems.

Mast cell activation can cause all of these symptoms (including brain fog, pain, hair loss and sleep problems).

I attached some interesting articles. The titles are:

- “Acute stress increases permeability of the blood–brain-barrier through activation of brain mast cells”

- “Regulation of plasma histamine levels by the mast cell clock and its modulation by stress”

- “Neuropeptides CRH, SP, HK-1, and Inflammatory Cytokines IL-6 and TNF Are Increased in Serum of Patients with Fibromyalgia Syndrome, Implicating Mast Cells”

- “The role of mast cells in functional GI disorders”

- “Mast cell degranulation distinctly activates trigemino-cervical and lumbosacral pain pathways and elicits widespread tactile pain hypersensitivity”

- “Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders”

- “Extracellular ATP mediates mast cell-dependent intestinal infammation through P2X7 purinoceptors”

- “The “missing link” in autoimmunity and autism: Extracellular mitochondrial components secreted from activated live mast cells”

Now that's a fascinating collection of articles. Especially “Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders” and "Regulation of plasma histamine levels by the mast cell clock and its modulation by stress". I'll check up on them later. Thanks!