Pollen

Oliver3

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I dread summer ever year in the UK because it feels like it may kill me.
I go through periods of sleeping for days on end, my POTS coming back, a feeling of vasoconstriction and " muddy" blood. Other times, I experience sort of manic episode s and dark depression.
I become irritable. I have much less energy etc.
Obviously everyone here has likely seen Dr afrin' s work on MCAS. He reckons about 70 % of m.e. sufferers have mast cell activation as their primary kick start to the illness.
This year, I've discovered piriton and added it to low dose aspirin and i feel less likely to have a heart attac or suffer those manic episodes.
I still can't excercise etc but it takes me away from becoming severe.
Does anyone else have a similar experience.
Recently, I added topical magnesium, diaezepam low dose, piriton, low dose aspirin, calcium channel blocker and ramipril as wel as electrolytes and being hydrated.
I felt....bloody normal....no terror...no POTS. I could walk down the street. No sensorial issues.
It was bliss ..just to be normal. It lasted all of half an hour, but I was able to walk outside in the day for half an hour.
If I can come up with that little chain of meds, surely Afrin and the Ron Davies etc have developed things further. Any further ideas,??? Similar experiences?
 

lauluce

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Hi, in retrospective my ME also seems to have started with symtomps of MCAS, which I believe could have been caused by house dust. Nowadays, house dust gives me quite extreme reactions, such as burning sensations in the upper airways, itching in scalp, hands and even the anus, and so on. I read that such itching is the precursor of an anaphilactic shock. What's Dr afrin' s work on MCAS? could you point me to some article? Thanks!
 

Oliver3

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Hi, in retrospective my ME also seems to have started with symtomps of MCAS, which I believe could have been caused by house dust. Nowadays, house dust gives me quite extreme reactions, such as burning sensations in the upper airways, itching in scalp, hands and even the anus, and so on. I read that such itching is the precursor of an anaphilactic shock. What's Dr afrin' s work on MCAS? could you point me to some article? Thanks!
This may be more digestible

 

Oliver3

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Hi, in retrospective my ME also seems to have started with symtomps of MCAS, which I believe could have been caused by house dust. Nowadays, house dust gives me quite extreme reactions, such as burning sensations in the upper airways, itching in scalp, hands and even the anus, and so on. I read that such itching is the precursor of an anaphilactic shock. What's Dr afrin' s work on MCAS? could you point me to some article? Thanks!
Yes, I think I've nearly gone into anaphylaxis...was terrifying...again , at this time of year in the uk
 

Booble

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The biggest improvement I saw on pollen and allergies was with a big high quality air filter.
THIS.

Last night we had the attack of the Mock Orange Trees. They produce a lovely perfume like scent that evidently travels far. My bedroom was filled with this lovely yet allergy inducing scent and the air filter didn't seem to even notice it. (The light goes Blue - Yellow - Red based on the air quality.) If we fart it turns red....but a room filled with allergy producing mock orange? Nada.
 

Oliver3

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THIS.

Last night we had the attack of the Mock Orange Trees. They produce a lovely perfume like scent that evidently travels far. My bedroom was filled with this lovely yet allergy inducing scent and the air filter didn't seem to even notice it. (The light goes Blue - Yellow - Red based on the air quality.) If we fart it turns red....but a room filled with allergy producing mock orange? Nada.
 

Booble

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I watched Dr. Been at the outset of the pandemic for a little while but then I noticed that his information seemed biased compared to some of the other doctors and public health experts so I lost faith in the accuracy of his information. But he does make cool drawings.
 

Oliver3

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I watched Dr. Been at the outset of the pandemic for a little while but then I noticed that his information seemed biased compared to some of the other doctors and public health experts so I lost faith in the accuracy of his information. But he does make cool drawings.
It's not basic at all. He's trying to provide lectures to a public who has no idea of th concepts.
Personally, I don't like the drawings. I don't hang on his everyword. I get my info from a variety of sources
Why do you think it's inaccurate. Where were you getting your info from. He provides in depth explanation s for layman which are accurate
This is a really important subject to me, MCAS. Connective tissue and mcas are one if the pillars of this disease. And likely many diseases.
So I'm biting down hard on the gumshield here and pushing back.
What is basic here? What is inaccurate. I'll provide numerous sources on MCAS

Why do people with m.e. do this. This is vital information. It's hard enough to get hold of good information, but then to say it's rubbish, without any examples is just rejecting ideas out of some kind of snobbery.
I think mcas. Has nearly killed me a couple of times, so I'm providing some info in the home that other people can either learn more or add to my knowledge
 

Oliver3

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I watched Dr. Been at the outset of the pandemic for a little while but then I noticed that his information seemed biased compared to some of the other doctors and public health experts so I lost faith in the accuracy of his information. But he does make cool drawings.

Just as an example of different people saying the same thing. There is without a doubt, a connection with mast cells , connective tissues and m.d.
I see Jen Brea talking about it a lot and she's frustrated, as am I that it's not being followed up on.
Whitney doesn't have MCAS and so the open medicine foundation are looking at other route causes.
But Dr afrin', who is one of the leading American doctors on in the field treating of mast cells ( and on Dr beens programme) reckons about 6/70 % of m.e. is just MCAS.
Ok, maybe he's wrong, but it needs investigating and not getting shot down.
Janice jonela, I think way back in the 80s tried to get a trial together for MCAS. Of course, there was so little acceptance back then that it didn't get off the ground.
We could be so far along, if people were open minded
 

Booble

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I didn't say basic, I said biased.
I was referring to his info regarding COVID-19.
I did not watch any of his other information on other topics.

If you find it useful I'm glad for you.
 

Oliver3

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I didn't say basic, I said biased.
I was referring to his info regarding COVID-19.
I did not watch any of his other information on other topics.

If you find it useful I'm glad for you.
No..it's a position. Every position has its own ideas.
Been has been very pro vaccine ( madly in my opinion) so I'm not sure what bias you're referring to. And has shown a pretty broad range of different view on his channel. He's not my god...I just thought he was easily digestible.
He had afrin' on his show. Afrin is one of the leading doctors on MCAS. There's no doubt about that. There is no information there.
Be careful not to talk at cross purposes with cross references.
This is what the me world is full of. Loads of bitterness and writing off things and not being open minded.
I can point you to loads of other mcas /opts /dysautomnia.
Like I said I'm biting down because this is what people do for " political" clout. Virtue signal
We should he beyond that. We are desperate people who need help aren't we. By suggesting been is somehow fringe, you're suggesting having afrin' on is suspect.
That's not right
I really want insight from people. This side of the illness scares me as I've been hospitalised, had to have my heart shocked hack into rythm, insanely high bps. As afrin' points out, if the mast cells are in the heart, that's dodgy .

So yes, excuse my passion. But I'm not letting you shut down potential al information just because his covid science was " wrong".
It wasn't. It was a view point. None of the science is 100 percent on covid
 

Oliver3

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I didn't say basic, I said biased.
I was referring to his info regarding COVID-19.
I did not watch any of his other information on other topics.

If you find it useful I'm glad for you.
As you admit, you haven't watched any if this, so why comment. Have you heard of afrin' before. Have you seen the work many people have done on the dangers of mast cell activation, ehlers danlos,
What was biased btw...im sick of this leftist shut down. It's anti science and anti logic..
That's how science is built. On building hypotheses. So biased ?? That suggests Mal intent. Absolutely not.
Please be careful of this kind of thing.
It's like the Wuhan lab leak theory. It was completely anti science to shut down the debate on the origins of the virus.
I'm completely open. There is no definitive proof either way. Big tech deplatformed anyone who just asked the question.
Why? At best, virtue signalling really not cool.
The left keeps doing this cos of the orange man.
But it shuts down debate
There. Point made
 

lauluce

as long as you manage to stay alive, there's hope
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I dread summer ever year in the UK because it feels like it may kill me.
I go through periods of sleeping for days on end, my POTS coming back, a feeling of vasoconstriction and " muddy" blood. Other times, I experience sort of manic episode s and dark depression.
I become irritable. I have much less energy etc.
Obviously everyone here has likely seen Dr afrin' s work on MCAS. He reckons about 70 % of m.e. sufferers have mast cell activation as their primary kick start to the illness.
This year, I've discovered piriton and added it to low dose aspirin and i feel less likely to have a heart attac or suffer those manic episodes.
I still can't excercise etc but it takes me away from becoming severe.
Does anyone else have a similar experience.
Recently, I added topical magnesium, diaezepam low dose, piriton, low dose aspirin, calcium channel blocker and ramipril as wel as electrolytes and being hydrated.
I felt....bloody normal....no terror...no POTS. I could walk down the street. No sensorial issues.
It was bliss ..just to be normal. It lasted all of half an hour, but I was able to walk outside in the day for half an hour.
If I can come up with that little chain of meds, surely Afrin and the Ron Davies etc have developed things further. Any further ideas,??? Similar experiences?
do you have an intact adenoid tonsil? my ME started with pain and burning in that area, which receives the direct impact of the air we breathe. I don't have an adenoid tonsil, though, it was removed when I was a child, but I suspct some of it might have remained
 

Oliver3

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do you have an intact adenoid tonsil? my ME started with pain and burning in that area, which receives the direct impact of the air we breathe. I don't have an adenoid tonsil, though, it was removed when I was a child, but I suspct some of it might have remained
Oooo..where you going with that? No my tonsils were removed early.
How would this feed into things?
 

lauluce

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Oooo..where you going with that? No my tonsils were removed early.
How would this feed into things?
well, the tonsils are lymphoid tissue, it'll make sense for them to be specially reactive to "allergens"
see this study: https://www.researchgate.net/public...bution_and_role_of_mast_cells_in_human_tonsil
It says:
"Mast cells (MC) are an important component in inflammation and immune surveillance mechanisms, and play a key role in defense against bacterial infection. Since tonsils are involved in inflammatory and allergic reactions, and because mast cells are also part of these reactions, this study was to clarify the local distribution of human mast cells in tonsils. Tonsillar tissues were from patients suffering from chronic tonsillitis or hyperplastic tonsils, divided into atopy and non-atopy groups. The localization and distribution of mast cells was determined by immunohistological study using anti-tryptase and anti-C-kit antibodies. Furthermore, the expression of IgE was also investigated. We revealed that in both groups, mast cells were distributed in perivascular and interfollicular areas. However, the expression of tryptase and C-kit in interfollicular areas was more significant in non-atopy group rather than atopy group. In addition, IgE was significantly expressed in perivascular areas, crypt and subepithelial tissue of tonsils from atopy group. In contrast, there was no remarkable increase of IgE expression in interfollicular areas. The finding that mast cells are differently distributed in the tonsillar tissues incited us to investigate the possible new role of mast cells in the tonsillar tissues in inflammatory or allergic conditions. " (atopy means "the tendency to produce an exaggerated immunoglobulin E (IgE) immune response to otherwise harmless substances in the environment. ")
 

Booble

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No..it's a position. Every position has its own ideas.
Been has been very pro vaccine ( madly in my opinion) so I'm not sure what bias you're referring to. And has shown a pretty broad range of different view on his channel. He's not my god...I just thought he was easily digestible.
He had afrin' on his show. Afrin is one of the leading doctors on MCAS. There's no doubt about that. There is no information there.
Be careful not to talk at cross purposes with cross references.
This is what the me world is full of. Loads of bitterness and writing off things and not being open minded.
I can point you to loads of other mcas /opts /dysautomnia.
Like I said I'm biting down because this is what people do for " political" clout. Virtue signal
We should he beyond that. We are desperate people who need help aren't we. By suggesting been is somehow fringe, you're suggesting having afrin' on is suspect.
That's not right
I really want insight from people. This side of the illness scares me as I've been hospitalised, had to have my heart shocked hack into rythm, insanely high bps. As afrin' points out, if the mast cells are in the heart, that's dodgy .

So yes, excuse my passion. But I'm not letting you shut down potential al information just because his covid science was " wrong".
It wasn't. It was a view point. None of the science is 100 percent on covid

Sorry. I shouldn't have posted that. You mentioned Dr. Been and it was the thought that came into my head. I don't need to post all my thoughts. I'll delete it.