Hey everyone,

I have developed what I believe to be allergies to literally all chemicals. I've been experiencing this horrific condition for nearly 5 years and have had enough of just "existing" with this condition. I need to get to the bottom of this. I need your help.  

My symptoms:

Sound/light sensitivity, popping ears, shortness of breath, hypertension, twitching/spasms, shaking, sinusitis, aching joints (wrists, ankles, knees and shoulders**), - Clicking/popping joints (especially my knees, which pop every time I walk),  Regular raw pain feeling in stomach (When you peel off a scab and there's that shiny bit of sensitive skin underneath). That's what it feels like when i press down on stomach., chronic brain fog and fuzzy vision (translucent out of signal black/white tv fuzz) and getting hypoglycaemic very easily. Literally half a teaspoon of Sugar is enough to set off the wired symptom.

Description:

When I ingest foods and other chemicals, immediately a stress response goes off in my body and sets off what I can only describe as my wired symptom. Its an uncomfortable often painful tingling sensation streaming through my body as if something biochemical has been triggered and released into my blood stream after ingesting the chemical/s. My pupils dilate and it activates my nervous system. It puts me in a state where I feel stressed and on edge, whilst making me feel crappy. It impairs my cognition even more than it already is. The more extreme my wired symptom/stress response is, the more stressed I feel and the more extreme my symptoms get.


**Worth noting that only my knees are painful when the stress response goes off but all the other joints inc knees I experience a lot of pain if I exert to much stress on these joints when doing things, eg massaging someone quite strongly would be too painful after about 20 seconds if the stress response had gone off, or walking up two/three flights of stairs.


What triggers the stress response?

- Exercise (This one is bizarre)
- With no exaggeration, ALL food.
- Stress

I call it the stress response tap. It feel's like it's constantly on to some degree, streaming around my body, so I am pretty intolerant to stress and have a short fuse when threatened.

Worst offenders? (In order)

- Cigarettes
- Marijuana
- Histamine rich food
- Spices (yep...ridiculous right?)
- Caffeine
- Alcohol
- Smoked food
- Hair spray
- Gluten/Yeast
- Exercise

My worst symptom:

Chronic Brain Fog - I have read many, many cases of people experiencing this symptom but nothing to the extent of how extreme and debilitating mine is.

The extent of how chronic and debilitating it is, is something which my friends/family/doctors still cant quite comprehend. It is so chronic I am completely unable to think, access any thoughts or memories. I can't process more than 4-5 words in a sentence, completely unable to process a paragraph, sit back and think about it, it's not a matter of hazy thinking, I am completely unable to think AT ALL. The best analogy I can find is is it's like solitary confinement in the mind, no activity, just dead space.

My quality of life and the boredom I experience is frightening. Completely unable to process anything properly - books, films, music, conversation, again just dead space, no escapism.

What has helped with my "condition"?

Diazepam - reduces my "reaction" to things significantly to a point where I could almost live a manageable/mildly functional life with it. Because there's much less wired symptom it helps my ability to process better and appear more functional in everyday situations, but doesn't improve the BF.

Cold air exposure - If im very symptomatic being outside for 15 minutes or more significantly improves my wired symptom, ability to process information and general symptoms like sinusitis. It's by far my quickest and most effective supplement. I have heard cold air exposure reduces glutamate exitoxicity - so something is triggering it, but I'm not exactly sure what it is...

Elemental diet - Being on this for 8 days reduced my reaction to normal foods (gluten, alcohol, ready meals & dairy based foods) considerably and normalised my stress response and improved BF by about 40%. I felt very calm and zen after and was MUCH better at handling stress because the stress tap wasn't on anymore. Eating "normal" foods for a couple of weeks made me go back to square one again though.

Tests done:

I've had thyroid, lyme, histamine, (awaiting full autoimmune profile) and most standard blood tests a doctor could do for someone who thinks they have something wrong with them. Done brain scan, tested for POTS. Nothing.

My own conclusions: I'm still pretty clueless as to what it is but Mast cell activation disorder does seem to sound likely.

Just something is triggering neuronal excitability...

Background:

I was experiencing feeling a bit odd and cognitively impaired for about 6 months or so until one night I ate a big carby pasta meal, which I believe made me hypoglycemic and then I smoked a little bit of weed (which I have allergies to i've now realised), the combined autoimmune response along with the hypoglycemia triggered inflammation in my hypothalamus, which made the baseline brain fog worse.

I'd greatly appreciate some ideas as to what you think I might have or for you to share any similar stories of people with very similar issues as it's bizarre that across the big WWW I can't seem to find anyone with my exact issues.

Thanks for reading.  

Sounds like you got issues with your mast cells.
Probably MCAS.
Exercise, stress, smoke, spices, histamine, salicylates, sulfites, strong smells, alcohol, gluten are common triggers for mast cells.
Benzodiazepines like Diazepam block the mast cell reaction for some patients.

You can get the tryptase level in your blood checked. Anything above 4 indicates you got more mast cells or more active mast cells than 90% of the people.

For really strict diets look here:
http://www.failsafediet.com/

Hi J!

Yes, it sounds like masto in one form or another and yes, you need a really good doctor to figure this one out!

As to Diazepam and why it works for us is because anxiety is seen by the stress system as a warning that the body is being attacked.  These emotions cause the stress system to release potent mediators.  The MC is full of receptors for these mediators and they thus trigger the MC to release.   So, by calming down the emotions, it doesn´t allow the stress system to be triggered and thus no MC degranulation.  

The stress system is primed by our eyes, ears, touch and emotions.  If we tense up our muscles, if we get spooked and our hair raises on our arms, if we hear too loud of noises, or lights flash or too much movement too quickly the body interprets these signals going through the central nervous system as threats and this forces the stress system to respond.   This is NORMAL body function but in masto patients the threshhold to handle these kinds of input is way, way too low and prior to activation they wouldn´t trigger us, but once we´ve activated, then our threshhold lowers and our toleration level with it so we trigger easily when nobody else would trigger!  This is why doctors often think we are merely being "emotional" because the vast majority of people don´t go through all of this!  But amongst masto patients this is typical behavior and it happens all the time with us!


J, Dr. Clive Gratton is the highest authority on masto in the UK.  But I don´t know how high of an authority he may be.  Since Spain is not so extremely far from you I honestly think it would be better to speak with one of the doctors there to see if they´d be interested in your case.  

If you want, I can help you contact Dr. Gratton as well as doctors in Toledo Spain at Dr. Escribano´s masto center.   Just send me a PM and I´ll give you the contact information.  

Hope this helps!


Lisa

Hi Lisa,

Thankyou SOOO much for taking the time to write such an informative response, it is honestly so much appreciated. Just so you know I will respond in greater detail when my fog isnt so bad.

I am seeing a doctor very soon and I was wondering if you could recommend me two drugs which have been the most recommended amongst the community to help lift the ghastly brain fog?

I obviously want to experiment with the drugs whilst I wait for further testing etc.

Is cromlyn the best mast cell stabiliser to start with?

All the best,
J

Correction on my previous post....

An increase of 20% in tryptase plus 2ng/ml within 4 hrs of a flare is a minor criterion.