• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CBS/SUOX symptoms ? not sure

Messages
79
Hi all,

Not sure if some of these symptoms are related to CBS?SUOX. Could anyone help/share experience?
Ive read something about that but some are not there. I encountered these symptoms after eating certain food especially proteins, dairy, coffee, after brushing my teeth with some toothpaste, or using coconut oil / olive oil for oil pulling (that sucks! i cant do oil pulling), one hour after meal...:

- Fallen cheeks ("fallen face") almost instantly after
- Pee sensation after eating those foods mainly or high sulphur food (like asparagus)
- Frozen feet and hands
- Low noise right ear like 15-20 min after protein meals (liver i guess)
- Dispneea or even forget to breath
- Blank mind / cant focus / not being present? (sometimes even when tooth brusing)
- Very low mood, sometimes even felt doomed, despair
- Anxiety each time
- Sort of jittery (sometimes) need to have more stimulation?
- Hard to make decision even easier ones
- Get very
sensitive to noises, people
- sort of "spleen" like i dont want to do stuff at all....

Dont want to force a conclusion just to get clear about symptoms.(maybe its neurotransmitters related). 1-2-3 hours after that I'm clear of
symptoms and then started again. These symptoms appeared or intensified mainly after 3 rounds of cipro years ago.

I have CFS since 4-5 years now after a “revival” of EBV, antibiotics and lot of digestive issues which were “diagnosed” as IBS, IBD, “all in your head”, “it doesnt exist”...you know the story. Not able to work due to these symptoms - with effort I can do like 4 hours per day but its not easy to find such a job as you know. anyway...

After many many test (money time efforts) till now I found I have H.pylori, Candida fungal, Giardia (all of the probably chronic) and more than sure (but not still appeared in test) gram negative bacteria in the colon. I’ll post my story later (after this brain fog) maybe some one has better ideas to start with.

Many thanks for your feedback !
 
Last edited:

Thinktank

Senior Member
Messages
1,641
Location
Europe
Does your face flush after eating certain foods? Or do you notice anything strange with your skin?
Some of your symptoms correlate with histamine intolerance or improper mast cell degranulation after eating certain foods.

I have exactly the same symptoms as you mention but have managed most of it with a low histamine / anti-inflammatory diet.

Also interesting you mentioned cipro. I had a round of cipro approx 3 years ago and i never really recovered from it. What was only brain fog and mild IBD once, after cipro / flagyl combo i completely collapsed. Now i know i have lyme disease but still... what if i never took that damn ciproflaxin. Fluroquinolones should be banned.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@AkeBono I get some of this rrange of symptoms from either sulfur or histamine. Pretty similar responses.

Easiest way to get further understanding is food elimination. Eliminate all of one or the other category, see if there's a difference after 3-5 days. For me, I had increasing facial eczema. About 50% resolved after removing histamines, the remainder after removing sulfur.

http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044

Histamine food list http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
 
Messages
79
Many thanks ahmo and thinktank !
I should get used with this concept "its not only X" :). I hoped it will be more simple.

Eliminating sulphur food (not all of them) definitively helped some with brain fog and dispneea. But not completely - sometimes it just came out of nowhere - probably some bugs/bacteria create sulphur or ammonia out of nowhere or even fasting as i red. Or even histamine response i presume...i forgot about histamine although its logical. since at least Hpylori create a histaminic response. later i was thinking i get cytokines response but forgot about histamine.hm...its so hard to

I dont get flushed face when i'm eating but i'm getting it in the morning when i wake up along with a sort of rhinitis and dispneea and dizzy feeling. the surprise for me was to get the simptoms even when i'm not eating but just do oil pulling and stuff. I didnt know it could happen so easily/quick. for the rhinitis after eating i guess its histamine/mast cells.

I remember i've seen the first link but got disparate with the remaining foods i can eat.
the second link is very interesting - the third one doesnt allow me to open it unfortunately.
"You do not have permission to view this page or perform this action."

besides diet are there anything i can do to reduce this response? oh...i cant take conventional drugs mainly because of the fillings. I used to be able but not anymore since candida. I remember an old doctor prescribed me ketotifen and claritine when i got something like asthma and was somehow better.

thanks again!

ps: i forgot...do you think low adrenal hormone have to do something with that? I know i have low cortisol but have to recheck
 
Messages
79
Fluroquinolones should be banned.[/quote]

yeah they should. one year they prescribed me 3 rounds of them...and after that i was almost dying twice. they see the reactions as "psychological". stupid ignorants !
 

Thinktank

Senior Member
Messages
1,641
Location
Europe
@AkeBono, ketotifen is a mast cell stabilizer + claritin as histamin antagonist can make you feel better if mast cells are behaving badly. Not sure but i think ketotifen also crosses the blood brain barrier?

You could have fluoroquinolone poisoning as well if you had such severe reactions to the cipro.

Maybe it's just the sulphur. We all have unique problems on here, trial and error is what you learn from.
 
Messages
79
what did you take to ease the symptoms?
i I've read online about vitamin C and B6 too improve the DAO enzyme? did not know what it is.
another piece of info i I've found relates histamine with "leaky gut" inflamed gut.
3 years ago when leaky gut was tested i 've also had borderline DAO (low value) along with very low D3 and low gluthatione. Have you also got this? i know i have.

Q: which forum should i post my story to get some feedback about steps in treatment?
 
Messages
79
also, if you know, is dye-off causing histamine also? cause sometimes i get the same issues without eating something and i get the feeling of some toxins creating that? i know now that some bugs can provoke a histaminic reaction but also the dye-off can create taht? do you know by any chance if there a difference between cytokines reaction and histamine one?
thank you again
 

dannybex

Senior Member
Messages
3,573
Location
Seattle
Fluroquinolones should be banned.

yeah they should. one year they prescribed me 3 rounds of them...and after that i was almost dying twice. they see the reactions as "psychological". stupid ignorants ![/quote]

Cipro and the other F-drugs are well known to cause 'spontaneous tendon ruptures'. The FDA was forced to finally and belatedly put 'black box warnings' on the drugs a couple of years ago.

I agree, they should be banned.
 

dannybex

Senior Member
Messages
3,573
Location
Seattle
Does your face flush after eating certain foods? Or do you notice anything strange with your skin?
Some of your symptoms correlate with histamine intolerance or improper mast cell degranulation after eating certain foods.

I have exactly the same symptoms as you mention but have managed most of it with a low histamine / anti-inflammatory diet.

HI Thinktank,

I'm curious if you've ever eliminated or tried a low salicylate diet. I noticed on the NutrEval thread that you had issues with a-ketoglutaric acid, where it drops to almost nothing at succinic acid? After about 3-4 years, I've just learned that this can be caused by salicylates…among other things.
 
Back