Doctor / Nurse / Medical Guide For Josie Evans
Anphlyactiod
Reactions ( first contact )
OFTEN
Idiopathic ( do not know the cause )
or
SULPHITE - Eaten , inhaled or contact ,
E220 -228 , Alcohol - WIPES , contact ,
eaten , inhaled , Vinegar , Caramel
colouring.
Medical -
IODINE - CT contrast
MAIZE STARCH - tablets
GELATINE - ECG stickers , examination
GEL
See Full List
Type 1.5 diabetic on insulin
NO lucozade or glucose powder/tablets
Addissions- Risk of Addissions crisis
On daily replacement steriods
Important reaction info on next sheet
IMPORTANT REACTION INFORMATION
I get a full Stridor
Monthly at best , often weekly
See full Monty
Once the wheeze starts I get 5 mins max to get Epi Pen in
The pen works with 5 minutes
If I am going to need more treatment it will be
within 1 hour of the first epipen , Typically 15 mins
LOOKING SETTLED DOES NOT MEAN I WILL NOT NEED
MORE TX
I have needed 2 lots of adrenaline + everything 50%
of the time
( Resus Attendee )
I get angioodema + rash + tachycardia +
BPdrop ( can go high in compensation for short
period )
I may not have a full rash if I have taken piriton /
ceterizine in previous hour
I get air hungry in response to shock + sats may be
ok = high flow oxygen
REMEMBER
NO tablets or capsules wherever possible as I
am allergic to maize starch / gelatine
( sulphite )
I will flush up with ambulance ecg electrodes
I can tolerate hospital ecg electrodes ( when fully
treated ) for 2 minutes . Defib pads not tested
Please wash my skin off immediately
(Gelatine / sulphite )
Reactions seem to be worse with food accidents or drugs
with long half life ( CT contrast -& doses of adrenaline ) as I
get more allergen going into my system ( as it digests ) . I
will often burp , itch various places , then begin wheezing
progressing to stridor .
I have had 31 Epi - pens in 3 yrs ( over 50 doses of
adrenaline )
I know my early warning signs and will often have taken
Chlorheneramine , hydroxyzine or ceterizine syrup
Grumpiness with no cause
Coupe moment , cant find the right words , slightly
confused , can not explain something simple .
Burping , abdominal pain
Pale ( ashen ), light-headed , need to lie down .
The trigger may not be obvious for foods its normally an hr
before
See full monty and symptoms and triggers lists
My details
Josie Mary Evans
21/02/1975
11 Bourton close
Stoke Lodge
Bristol
BS34 6EQ
Landline – 01454 610850
NOK - official Amy Wallis - sister – 07713264484
Care agency
Medacs home care
01454 605027
My medications
Idiopathic angiodeama
H1 –
Piriton 4mg 6 times day – stabilizes mast cells /stops itching. Emergency
medication for in a reaction
Ceterizine 10mg twice a day – helps chest
Hydroxyzine 25mg twice a day ( more in a reaction ) – helps brain fog and
spasms
H2 –
Ranitidine 300mg twice aday – helps bowel spasms and frequency. I still swell
but not as painfully- ie not coming through the painkillers .
Leucrotine blocker –
Singulair 10mg twice a day – helps chest and has reduced my overall swelling
Pain relief –
Oxyxcodone 15mg twice a day – helps with bone pain . hip pain comes through
sometimes and abdomen sometimes . When I have an infection it wakes me up .
Without I cant move or take a deep breath without wincing .
Co-codamol 30/500 as required – slows bowel and helps with cramps.
Paracetamol helps reduce prostaglandin cramps , flushing and low BP
Inhaler – symbicort 200/6
Nasal spray – sodium cromgualte 2 puffs twice a day
Nausea and vomiting within idiopathic angiodeama
Cyclizine 50mg 3 x a day , antisickness
Hypertriglycerideemia -Cholesterol
Fenofibrate 160mg once a day
Addissions – 20mg hydrocortisone once a day – essential without which I can
die
Diabetes – Insulin pre meal
Actrapid – 17/20/25 pre meal and glargine 55 units
Idiopathic anaphylaxis
Emergency epipen – 300mcg –o.3ml(1/1000 ) IM - into muscle
Piriton 8mg, Ceterizine 10mg and Hydroxyzine 50mg, symbicort 200/6 6 puffs
Ambulance for emergency care . the epipen buys me time for paramedics to get
here . frequently
Asthma
Symbicort 200/6 2 puffs twice a day .
Regular infections – between 1-4 weeks of antibiotics with a months gap
maximum between courses . typically coamoxiclav 625 3 x aday
PR Bleeds
No treatment unless I fell dizzy then I call an ambulance
Details of conditions
I was wrongly diagnosed with fibromyalgia .
My conditions are addisions disase , Diabetes type 1., hypertriglyceridemia and
metabolic syndrome and mast cell disease, recurrent infections, PR bleeds and
umbilical hernia .
Adrenals .- NON functioning – Idiopathic Addisions disease – daily symptoms
Fatigue,
Lightheadedness upon standing or while upright,
Muscle weakness,
Fever,
weight loss,
difficulty in standing up,
Anxiety,
Nausea,
Vomiting,
Diarrhea,
Headache,
Sweating,
changes in Mood and Personality, and
Joint and Muscle pains.
Some have marked cravings for salt or salty foods due to the urinary losses of
sodium.[
This is helpful . As on pale dizzy , low blood pressure , can’t sit up without
jiddering sweaty mornings , I can see extra steroids may be needed . The crisis
is known as addisonian crisis ;Characteristic symptoms are .
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Sudden penetrating pain in the legs, lower back or abdomen
Severe vomiting and diarrhea, resulting in dehydration
Low blood pressure
Syncope (loss of consciousness and ability to stand)
Hypoglycemia (reduced level of blood glucose) ( not relevant due to
diabetes )
Confusion, psychosis, slurred speech
Severe lethargy
Hyponatremia
Hyperkalemia (elevated potassium level in the blood)
Hypercalcemia (elevated calcium level in the blood)
Convulsions
Fever
Meds – hydrocortisone 10mg once a day . doubled in an infection or other illness
.
Diabetes has 1 types and 2 .
I am type 1.5
In type 1 the person makes none of their own insulin so it needs replacing.
Symptoms of high blood sugar

Passing high volumes of urine ( as high sugar takes water with it when it
leaves the body through the kidneys )
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Thirsty ++++++ - to replace fluids

Losing weight – as body breaks down fat and protein as it thinks there is
not enough sugar in the body so makes more .

Acid blood from the ketones from protein
At diagnosis sugar can be very high . Normal is 5-9 . Mine was 25 can be higher
So insulin in given in injections before each meal and at night . Insulins are long
acting , to give background energy .To use energy from the body . Insulins at
meals can be short or medium acting to use sugars coming from meals .
My insulins are Actrapid – 17 /20/25 before meals . Glargine – , 45 units pm
Units are measures . there are 100 units in 1ml of insulin . Special syringes and
pen injections are used
Missing meals or increased exercise can lead to low blood sugar .
Symptoms –
Disconnected
Slurry
Sweating
Poor coordination
unconciousness
This can lead to the person being aggressive / appearing drunk .
If sugar drops below 4 it need correcting immediately as it will lead to a diabetic
coma, which can be fatal. The brain needs glucose to operate so below 3 un
consciousness is likely. When its below 4 sugary foods need to be consumed .
No lucozade or glucose tablets, powders . Hypostop is safe . Until it is 4 as below
this the body can not use complex carbohydrates only pure sugar ( glucose )
once its over 4 a meal is needed or a snack if a meal is due .
To achieve a increase of sugar of 1 mmol – when its below 4 – 15-20mg of
sugars need to be consumed. This is traditionally glucose tablets or lucozade. I
need other as I can’t have either . I use orange juice in small bottles and tootie
fruties ( a set number )
When a diabetic is ill , their sugars will raised by the infection . High sugar is over
10 . So , sick day rules are used. With the aim of avoiding diagnosis symptoms
.These are – Sugar level taken pre meals
Below 11 - normal insulin - 2uints extra
11-17 – 4 units extra per dose
Over 17 – 6 units extra
If total insulin in 24 hours is over 50 units – double all amounts
INSULIN should NEVER be stopped .
Type 2
The individual is making insulin but can’t use it properly. So sugar levels are high
. tablets are used to lower sugar with meals . Patients often present with
complications . Metformin can not give low sugars . All others can .So
hypoglycaemic rule s apply . Sick day rules apply . But guidelines are in tablets
Long term complications
High blood sugars leads to complications. Ideal control 5-9 mmol /l pre meals
Nerve damage Circulation damage leading to poor peripheral ( edge ) circulation
Heart disease / strokes
Kidney damage – up to failure
Eye damage – leading to blindness .
High cholesterol
Metabolic syndrome – were the body can’t use insulin leading to high cholesterol
esp hypertriglyceridemia – which means there is fat in the blood which can give
pancreatitis. Which leads to digestive enzymes burning the bowel and internal
organs and can be fatal . I have this –was 75, now 12 . Total cholesterol now 7.9
Low or high sugar or high cholesterol impacts my mast cell disease and act as
triggers . Diabetes is an autoimmune disease . Any autoimmune disease acts as
a magnifier of any mast cell symptoms .
Mast cell
I have had extensive testing and the cause is unknown (idiopathic ) but I do
have mast cell disease – angiodeama – swelling and anaphylaxis .
My mast cells , which are a part of the immune system get triggered off easier
than other peoples . My adrenal and diabetes problems add extra triggers . mast
cells live normally in the skin , digestive system mouth to bottom , bladder ,
womb / ladies bits ( man bits ) eyes , ears, lungs, lung tubes , nervous system
and brain linings , heart , blood vessels ,Bone marrow .
The chemicals released from mast cells and treatments are detailed below .
There are receptors for histamine – were they activate trouble in all the areas
listed , also brain ( cross blood brain barrier ) – heat centre , concentration ,
memory , mood centres and it is a chemical called a neurotransmitter which
helps nerves conduct signals to the brain and out for action .
Anaphylaxis / anaphylactoid reactions are an emergency manifestation of this
condition . Details of my anaphylaxis below
My pattern of symptoms ;in a reaction -daily
I have early symptoms , allowing for oral dosing – 8mg piriton , 10mg ceterizine ,
25mg hydroxyzine . Will generally stop a reaction if it is going to
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Agitated / angry
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Grumpy for no reason

Can’t find a word , a simple word

Disorinetated , Become inarticulate / glaze ( Bp low )

Bowel churning / vomiting
I call my Shock / reaction –
“The Full Monty “
I am going to try and explain how it feels when I react . The first thing that
happens is that I get
1. Intensely hot , burning. Often my face but also anywhere else on my
body . Grumpy / excessively frustrated
2. Flushed on face and upper body , very rarely legs
3. Then I start itching , mouth for inhalants and foods ,
4. the nose , my nose blocks almost immediately and I have to mouth
breathe , ( indication of full reaction ) / coupe moment
5. any other area of my body may be intensely itchy , face , hair , body ,
lips , inside front of mouth , back of mouth , back palette .
6. Swelling starts on face / lips , genitals / legs . Bowel cramps / loose
stools - all mucous membrane effects . Tongue up at front.
7. My ears pop and I yawn a lot
8. Then my heart rate goes up , to the point that I feel it is “ banging out of
my chest “ then
9. my chest feels tight . I cant take a deep breath in ,
10. my throat feels itchy / tight , right inside where I cant get to it . Voice
down / croaky ( sally sex worker voice )
11. I cant swallow my saliva
12. I then get wheezy in my chest , breathing very fast , blue lips / chin
13. c then you can hear the wheeze from afar ,
14. A Excessively thirsty , B:- shaky , C :- jittery , D :- dizzy even sitting
15. Sometimes :- get impending sense of doom
16.
A = Airway :- Then I lose my voice and my throat closes completely .
:- I cant breathe through my nose . 2 hands on my throat
B = Blue
:-Legs / hand blue , lips /chin / face remain blue
C = confused :-Confused shouting
D = Dizzy :- Light headed , need to lie down ,
E = remain all of 14
17 . Unconscious –
Death – no heart beat / vv slow , no blood pressure / vv low ( under 70 ), no
breathing .
Treatments – Call 999 and say anaphylaxis
CPR may be required to aid circulation until ambulance arrives
I have had 32 of these
Needs EPIPENs ,- usually 2 .. first given immediately by me , then second within
1 hour - brings up pulse and blood pressure, reduces swelling in throat .
IV piriton – stops actions of histamine on type 1 receptors
IV steriods - stops swelling in lungs and throat
Fluids – NOT plasma expenders – to replace fluid in the blood
IV ranitidine – stops action of histamine on type 2 receptors
These are they symptoms the chemicals from mast cells cause. Daily symptoms
in red
Histamine
Histamine recptor type 1 effects
itching – all over
skin writing - Yes
hives – yes to true allergies and gelatine
Burning rashes – yes
Swelling - from fluid moving into tissues – YES- any were were mast cells are or
histamine can move to
Flushing – YES –IMPORTANT –DRY ,until shock ensues
Pale - YES –when BP drops / syncope /presyncope
Dizzy - BP drop ( can go high on the way ) – YES ( from fluid leaving blood and
going into tissues ) – daily – lowest suddenly 81/40
Fast heart –YES - Over 150 or going slow in anaphylaxis
Short of breath –YES –from mildly wheezy to breathing rate of 40 and lungs full
of fluid
Wheezy -YES
Throat close – YES – Stridor - leading to collapse ( anaphylaxis symptom ),
bone pain – YES +++ In ribs , long bones and joints ( hips and shoulders ), back
Intersitial cystitis - sterile cystitis , microscopic heamturia - Yes
recurrent infections – yes
Eye problems – Dry yes , inflammation
Migraines - yes
Ringing ears - yes , sign of high overall inflammation
Painful sinus' – yes , when blocked due to reaction
Over heating – Yes +++++++++++++
Poor cold tolerence – No , ONLY FEET
Pain in intercostal spaces ( between ribs )
Histamine receptor 2 symptoms
Abdominal pain – from swelling bowel which makes me look 9 months pregnant
and my stomach be hard and me be unable to sleep as I can’t get comfy
Bowel swelling - YES
Diarrhea – YES – loose stools even on strong medications which should mean I
need meds to make me poo
Vomiting -YES
GERD - too much stomach acid - Yes
Spasms of bladder , bowel , stomach , womb , chest wall – Yes all
Brain receptor histamine effects
Pins and needles / numbness – parathsesias – Yes , hands ,arms ,feet , to
numbness
Nerve pain – neurogenic – Hands , feet , abdomen ( stabbing ) – from histamine
neurotransmitter role
Brain fog - mixed organic brain syndrome –YES – concentration , memory –
makes me channel flick and forget what I am doing if I am distracted , agitation ,
word finding
Prostoglandins ( all )
flushing –dry
headaches ( from blood vessels opening , dilating in an enclosed space )
smooth muscle spasms - bowel , stomach , throat , bowel , bladder , womb,
chest wall
BP drop
Anxiety – but I cant tell you why and over long period can lead to depression .
Lecotrines
(same with histamine )
Swelling of airways in chest – can’t take a deep breath to bottom of chest , then
minor wheeze only I can hear, then audible wheeze you will hear across the
room
and all over – yes – tend to fill from the bottom up .
Asthma type symptoms –Yes – when building symptoms lips go blue on minimal
exertion , when chest wet, my legs go blue on moving bed to commode +SOB
Throat swelling inside –Yes –stridor , increasing to complete obstruction
Heparin ( all )
blood thinner so leads to bleeds –PR, Nose, womb( in between periods )– with
spasm which make my legs shake - cervix fine
oesteoprosis-not yet
Tryptase
high cholesterol .- Yes from first level taken July 08 ( got so high I luckily avoided
pancretitis ( inflammation of the pancreas ) and dying in April 11 .
Separate from the chemicals from mast cells directly
Compliment – Your inborn immunity – gets activated and has consequences
Alternative pathway – my 3a is raised
Smooth muscle spasms – digestive tract , bladder , reproduction system , chest
wall , Throat
Flushing
Low BP and swelling - Blood vessels become porus leaking fluid into tissues –
note 2l can move before swelling becomes visable .
Activates mast cells
Treatment focus' on controlling as many symptoms as possible ;-) This is by
blocking histamine receptors and stopping mast cells putting the chemicals into
the blood .
These are the treatments commonly used ;-)
My medicationsH1 –
Piriton 4mg 6 times day – stabilizes mast cells /stops itching. Emergency
medication for in a reaction
Ceterizine 10mg twice a day – helps chest
Hydroxyzine 25mg twice a day ( more in a reaction ) – helps brain fog and
spasms
H2 –
Ranitidine 300mg twice aday – helps bowel spasms and frequency. I still swell
but not as painfully- ie not coming through the painkillers .
Leucrotine blocker –
Singulair 10mg twice a day – helps chest and has reduced my overall swelling
Pain relief –
Oxyxcodone 15mg twice a day – helps with bone pain . hip pain comes through
sometimes and abdomen sometimes . When I have an infection it wakes me up .
Without I cant move or take a deep breath without wincing .
Co-codamol 30/500 as required – slows bowel and helps with cramps.
Paracetamol helps reduce prostaglandin cramps , flushing and low BP
Cholesterol
Fenofibrate 160mg once a day
VERY low fat diet . As triglycerides remain 12-15 .
Addissions – 15mg hydrocortisone once a day – essesnial . Up tp 30mg in an
infection . IV steroids in an anaphylaxis .
Diabetes – Insulin pre meal
Actrapid – 17/20/25 pre meal and glargine 55 units
Inhaler – symbicort 200/6
Nasal spray – sodium cromgualte 2 puffs twice a day
Emergency epipen – 300mcg –o.3ml(1/1000 ) IM - into muscle
Fan to keep me cool to the touch . I sit under it day and night . I cant sleep
without it. Histamine and serotonin mess with my temperature control . At night
without a fan I get night sweats . These are drenching if my steroid level is too
low. This happens when I have an infection, reaction or high emotional stress .
Yes, on this mix I should me comatosed, but I am not . The circulating histamine
reduces the sedative effects and pain uses pain meds . they slow my bowel to a
normal level
Paracetamol is tolerated by most patients . Lists of suitable medications
H1 receptors are in skin , lungs , bladder ( can have mast cells ) The drowsy
ones are stronger and work better and have the ability to stabilising mast cells .
the drowsy side effect wears off after 2 weeks . It is not a problem for me .
H1 blockade - drowsy making
Benadryl – USA ( not ceterizine )
Hydroxyzine - 25 mg up to 4 times a day ( I take 2 doses )- this has revoltionised
my brain fog and spasms
Piriton 4mg up to 6 times a day ( i take 4 doses and keep extra for emergency 8mg )
Ketiofen 1-2mg 3 times a day - also stabilses mast cells . Available in canada ,
italy and UK . Its a safe drug widely used with immense success
Doxepin - stabilises mast cells and is widely used . Some people dont tolerate it .
H1 blockade - Non drowsy
ceterizine hydrochloride - 10 mg once a day ( I take 2 doses )
fenofexidine 180mg once a day ( common dose 2 times a day some 3 ) I don’t
tolerate this .
H2 blockade - digestive system, Mouth to bottom
ranitidine 300mg twice a day - drug of choice - has taken my bowel pain on a
daily movement much better , reduced frequency and bleeding
PPI - proton pump inhibitors
Omeprazole , lansoprazole and the like to control stomach acid
Leucotrine receptor agonists ( blocks )
Singulair 10mg once a day ( i take 2 doses as per doc off licence this is common
Parcetamol - sailcilates
1g 4 times a day - reduces effects of prostogalndins in me
NSAIDS / ASprin cause mast cell activation so may not be tolerated but can lead
to consistant degraulation aiding symptom control . i can't tolerate these at all
Opiates . Are not advised , some people tolerate them .I tolerate one type . I
have 15mg oxycodone twice a day for pain and co-codamol 30/500 as needed .
Co codmaol contains paracetmol and codine
Cholesterol – fenofibrate 160mg once a day
Statins mix badly with h2 blockers which I need
Mast cell stabilization drugs - gastrocrom / Nalcrom - sodium, cromlyn . Is a good
drug. It can be expensive but different preparations are available . Also available
is nasal crom, reduced dose but a large percentage of the oral dose is
metabolised on the first pass through the liver . So nasalcrom in real terms
dosing is ok to begin. Available OTC
Gastrocrom is used for mastocytic entrocollitis . A 6 week course is prescribed .
In mast cell disease / mastocytosis gastrocrom is used as a daily prescription to
stop mast cells splitting in the first place .
Up to 200mg 4 times a day . Of 800 mg taken orally , 57 mg is retained in
circulation to stabilse mast cells .
When the list of meds is exhausted . Immunomodulation can be used , these
include methotrexate , cellcept , interferon ( favoured by Dr castells ) gleevac .
Steriods were used and do work , but have serious long term implications . So
are favored for emergency only .
Depression
Depression symptoms are common in mast cell conditions as a result of long
term prostaglandin release .. High serotoinin ( from mast cells ) on a background
of a greiving process can lead to low mood which is hightened by the high
serotonin .
Low thoughts are part of mixed organic brain syndrome – histamine actions on
the mood , communication. Memory, concentration centres
Anxiety is also a mast cell symptom of prostaglandin , serotonin and histamine
release . Benzodiazepines are favored to reduce anxiety as they help control
stress as well which is a trigger in itself .
Managing the mast cell chemicals is the best treatment option. SSRI/SSNI’s
bring risk of serotonin syndrome . Tricyclics , except doxepin in very low dose
have risk if arrthymia in co current Epipen use .MOAI’s are seen as having lowest
risk of serotonin syndrome in patch form, but the glues are often an issue .
So antihistamines – particularly Hydroxyzine, has been used for brainfog for
10yrs by the usa , National Institute of health, are effective to manage mixed
organic brain syndrome .
Serotonin lowering agents aren’t currently used as the serotonin level varies with
the extent of mast cell activation . So lowering it has the risk of clinical
depression . If the patient has symptoms of high serotonin , particularly mood
enhancement of any mood , then mast cell stabilizers are best placed to lower
levels to a normal level .
Prostaglandins are more complex . NSAIDS, which cause mast cell activation,
are given in controlled doses , to keep prostaglandins – which are made from cox
1- from mast cell walls breaking down –at a set level . Not all patients tolerate
aspirin the drug of choice. They shouldn’t be given it if they have vinegars as a
trigger . The weakest silicilate
Triggers
Triggers are anything which causes mast cell activation . By any means – IGE ,
other immunoglobulins , compliment , individual mechanisms .
True allergy mast cell activation - In allergy, the first time a substance is met, the
body wrongly identifies it as bad / harmfull . The body makes antibodies and
attaches them to mast cells . The next time the person meets the substance it
pairs with the antibody and it makes mast cells split in huge numbers , causing
anaphylaxis .
My total ige is 188 . I have 3 true allergies . cats, house dust and grass.( many
others tested ) None of which are high enough ige –total 35 ige altogether. Over
100 is anaphylaxis level . So my true allegies do not explain my anaphylactiod
reactions .
Other mechanisms are compliment traditional and alternative pathway, Esp so in
co existing autoimmune disease . Direct action on mast cells – heat, cold, alcohol
Neuromediated – stress . Many triggers have no mechanism identified but high
histamine and prostaglandins are present .
Anapahylaxis is true allergy originated. Anaphylactoid are trigger originated. In
me my anaphylactiod reactions are as serious as anaphylaxis . requiring
epipen(s)
Conditions excluded
High histamine in the body – Systemic Mastocytosis , carciniod syndrome
Kinin based –heriditory angiodeama ,- inc failed trail with treatment tranaxamic
acid
autoimmune common presentations –hashimotos thyroiditis ,adrenal
autoimmunity and lupus ,amiloydosis
Differential diagnosis –pheocryocythoma , myeloma ( 3times) , sarcoidosis ,
lymphoma ,
Chest CT shows some perenchymal changes, CXR- not normal-showing
angiodeama ,
Abdominal pain -gallstones (3 times ), colitis macroscopic and microscopic ( but
not mast cells ) . CA sigmoid colon –NO large bowel visualistion
Full rheumatology workup ,
neuro – MS, myloma, brain and spinal cord lesions
Triggers in me
Hints of trouble :- labile BP – Bp varying with minimal movement ( fluid moving ) ,
reduced exercise tolerance ( slow walking ) . knees going blue on minimal
exertion is assign of
Mine are ;Sulphites – see naughty list ( acidic based pathway in lungs leads to
broncoocnstriction , up to full symptoms quickly .
High histamine foods + naughty list
Table 3. Foods high in histamine
Kind of food
Examples
Fermented foods
Cheeses (Gouda, Emmenthal, Harzer, Roquefort,
Tilsiter,Swiss, Camembert, Cheddar, Parmesan)
Processed meats (sausage, salami, ham)
Soy sauce and other soy products
Sauerkraut
Alcoholic beverages (Champagne, red wine, beer, white
wine)
Vinegar, red wine vinegar
Sour cream
Yogurt
Yeast extract
Frozen/smoked or
salted/canned fish
Anchovies
Mackerel
Herring
Kind of food
Examples
Sardine
Tuna
Microbial activity in
foods
Ungutted fish
Leftover meat
Some fruits and
vegetables
Spinach
Eggplant
Tomato
Tomato ketchup
Berries (especially strawberry)
Jams/preserves
Avocados
Table references: Maintz & Novak, Bodemer, Joneja.
Table 4.
Foods with
suggested
histaminereleasing
capacities
Source
Food
Plantderived
Citrus fruit
Papaya
Strawberries
Pineapple
Some nuts
Peanuts
Tomatoes
Spinach
Chocolate
Banana
Eggs
Milk
Animalderived
Fish
Crustaceans,
shellfish
Pork
Egg white
Other
Additives
(for
example,
sulfiting
agents)
Alcohol
Liquorice
Spices
Here is a list of the foods and other things that cause my symptoms .
Allergen
Reaction .- Severe
High sulphite level
= high risk
Other foods aware of but not
reacted to solely
but in combination
Not reacted through
avoidance
Never liked
Never
Not reacted to yet
Sulphites
E220 -228
Wine , Cider ,
martini , larger ,
beer
Popcorn , many
sweets ;-( , toffee
bob bons , toffee in
general
Fruit Juice especially from
concentrate. Has
citric acid and
sulphur dioxide in
also
Sausages
Fruit squash
Cooking sauces white wine sauces
Grapes - naturally
high in sulphites ,
fertiliser contains
sulphites ,
transported with
sulphite for
freshness. (
unlabeled)
Bananas sulphur dioxide
used to mature
bananas for sale
(unlabeled)
All types of
vinegar - sprit ,
distilled malt ,
balsamic , white
wine , cider , rice
.( some labelled )
Symptoms
experienced
Inhaled - bright red
rash all over ,
blocked nose ,
mouth , throat
swelling , lungs fill
with fluid, voice
goes airways close .
Eaten - dose
dependant
itchy body , mouth,
throat swelling ,
lungs fill with fluid ,
voice goes , throat
closes
Malt vinegar,
Sausage rolls poorly labelled
batch got me , now
on anaphylaxis
campaign web site
from other
subscriber
Garlic bread . (
variably labelled ).
Pizza dough .
Raw young garlic
Anaphylaxis
Teas - instant and
pre- prepared .
Milk - skimmed or
semi skimmed
with added
vegetable oil UHT ( unlabeled )
Gravies
Corn products oil , corn starch ,
other meat
products - inc
Pies and pasties Maltodextran ,
Horseradish , mint ,
pastry improver ,
in meat or vege
prior to
processing
(unlabeled
apple sauce,
mustard,
brown sauce
Jams and
marmalades
Breads ,
baguettes in
particular , dough
improver - breads
, all kinds esp.
baguettes , bread
sticks ,
Salads - for colour
( variably labelled
)
Anything
containing - corn
starch , maize
starch - soups ,
custards , gravies
, dried mixes for
meals , cakes ,
skips ,
Corn oil - crisp
and dry ,
vegetable oil ,
maize oil
Sulphite
Avoids
Cakes and
bakery
products mince pies ,
fruit pies ,
Christmas cake
, Christmas
pudding ,
Danishes ( fruit)
( variably
labelled
Dried fruits ,
apricots ,
raisins ,
sultanas cereal
containing dried
fruits ( variably
labelled )
Fruit jellies Jaffa cakes  gelatine and
fruit juice
concentrates (
variably
labelled
desiccated
coconut
E150 b
E150d
Dried products vegetables , garlic ,
stock cubes , soups
. carrot
Dried pasta ,
noodles - sulphite
used to soften grain
for processing (
unlabeled ) ,
Gelatine - skin soaked
in sulphite to soften found in :- yoguarts,
Jaffa cakes , jellys ,
custards ,
Note connection to
ECG tabs
Potatoes- frozen
- chips / fries , pre
packaged, pre
cooked , peeled .
HOT CHIPS
Crustaceans - prawns
- 30ppm sulphite
allowed , frozen ,
cooked or f,resh
Fresh pasta - due
to filling ( variably
labelled
Syrups - maple ,
and custards (
poorly labelled )
Meat , vege ,
apples preserved in
sulphite prior or
after processing
Cheeses - the
longer matured
the more the
sulphites (
unlabeled
Malt loaf
Malt cereal
Caramel
colouring anything dark
brown
Potato - instant
mash ,
dehydrated ,
crisps , potato
starches
Mars bars
Soy sauce ,
brown sauce
Gravies
Cola of any brand
Stock cubes ammonia
caramel
shrimps , crab ,
lobster - put on to
preserve colour on
boat
Variably labeled
Some fresh fish for
colour - salmon
Fishmongers should
have sign up
Eaten - dose
dependant - large
volume - itching all
over inc mouth .
Lungs tighten , throat
swells , lungs fill with
fluid , throat closes .
Anaphylaxis
Small volume wheezy in chest , local
reaction ( in throat) ,
can be cumulative
with other allergens
Vinegar of any
description ,
Pizza bases
horseradish sauce
in its own
right
Mustard
( contains
sulphites )
apple sauce , mint
sauce
Domestic cleaning
products
sandwich spread ,
mayonnaise ,
salad cream coleslaw ,
potatoes salad
Tomatoes
ketchup , brown
sauce Soy sauce
-
many cooking
sauces , curry and
sweet and sour ,
Skin - local irritation
Inhaled - mouth itchy ,
throat itchy
Eaten - delay if in a
food - unto 3 hrs itchy initially , lungs fill
with fluid and tighten ,
throat swells , stridor
noise , voice goes
throat closes
Anaphylaxis
Breads - French
breads /
baguettes in
particular
Within 1 hr - loose
stools , bowel spasms
++++
Alcohol of any
description
Wine , cider,
martini in particular
Alcohol in
medicines and
medical
examination gel
Domestic cleaning
products
Body moisturiser ,
facial care
products
In personal care
products and
cleaning products
Drunk - bright red rash
all over body ,
blocked nose , fast
heart beat , fast
breathing , itching all
over , swelling face
In medicines tightening of chest
over several days of
ingestion / application
, cumulative effect .
Leading to wheezy
chest , unable to
speak in whole
sentences , blue lips ,
feet, hands .
Skin contact - red ,
raised rash
Malt - barley
flour - ?
Malt o dextrin
- in all malt
culprits
Malt loaf , Malt
cereal
Gravies , Tunes
throat sweets
Mars bar
As per E 150
Bread sticks
Mouth itched with
maltesers
Sugar substitute splenda
Anaphylaxis
Oral pollen
syndrome raw - worst
over ripe -
bananas melon ,
pears Grapes naturally high in
sulphites and
sprayed with
sulphite fertilisers
and cant eat them
raw
Apples , carrots ,
red pepper ,
Was having large
fruit salads
through April may
09 Melon - 1/ July 09
Pear - 25 Sept 09
Apple - juice sept 8th
Can be on immediate
contact or Delay-unto
5 hrs
Ripeness and dose
dependant - itchy
everywhere esp.
mouth , back palette ,
swollen face , itchy
throat ,
? Mangers 27/12/08
Red pepper - oct
22nd - in salad
wheezy chest ,
audible wheeze ,
stridor , lungs fill with
fluid , throat swells ,
throat closes
Anaphylaxis
If stop when itchy
mouth other
symptoms avoided
,
Pollens
Grass
Tree
Can blow over
from other areas up to 10 miles
Localised itching , if
inhaled , wheezy
chest Face , mouth ,
general skin itching
Back palette , facial
swelling , audible
wheeze Itchy mouth (
lips front of tongue )
Other foods
Pot noodles - FEB
10 . Twice dried
ingredients - onion ,
mushrooms , garlic
( sulphites
Sunflower , corn ,
rapeseed oil
UHT milk - Jan 10
( noted contact
Aug 08 x 2 , 18
march 09 )
UHT milk - dose
dependant - Flushing ,
itching Tight throat ,
wheezing, increased
wheeze + voice
change. Fast heart ,
feeling dizzy , lightheaded
Fake tan
(sulphites)
Itching all over , in
mouth if in toothpaste
Body moisturiser
(sulphites )
Inhaled - wheezy ,
audible wheeze , fast
breathing , fast pulse .
Sweating .
UHT milk and
cream
Ready meal
lasagne - pasta ,
dried ingredients ,
stock cubes ,
mature cheese
(sulphites)
Personal Care
Products
Sodium laureth
sulphate - in Shampoo ,
bubble bath ,
toothpaste ,
anything that
foams
Pot n & lasagne - dry
mouth , sweats , fast
heart , light-headed .
Contact - Itching
noted after bath for
years , “asthma” Oct
07 after using bubble
bath .
Aug 08 , at home ,
when in hosp used
soap ( no sls ) hence
no shortness of breath
Medical
Onmipaque - CT
contrast Iodine based
Erythromycin – All
mycin antibiotics
short of breath,
tongue swelling
Tramadol vomiting , tongue
swelling
Amitryptyline doesn’t mix with
EPIPEN
Adrenaline .
Metroclopamide stopd histamine
being broken
down - shakes all
over body
OminpaqueAnaphylaxis
itching , blue lips /
peripheries , fast
breathing , light
headed , jittery , throat
tight , cant move any
air
Meptid - concern
it was making me
more short of
breath .
Clexane and low
molecular weight
heparin .
flush ++ itchy, mouth
swelling, chest filling ,
BP drop , anaphylaxis
Alcohol skin
swabs
Alcohol - local raised
rash
Sticky on some
dressings -
savalon dressing
= blisters
If in blood - full upper
body rash , itching ,
light-headed, fast
breathing
Medical
examination gel
all gels inc
ultrasound gel
Medical exam gel /
swabs
Gel on medical
swabs
Dependant on it
getting into the blood .
ECG pads ( gel ) flushing , local
hives , itching – in
2mins ,on to
serious symptoms
Gel on pads - ecg local rash and flushing
. Examination gel flushed , jittery , shaky
, sweaty , lungs tight ,
stridor , blue
peripheries to thigh ,
fast pulse , fast
breathing .
Corn flour in
medications
Inc creams ,
tablets , pesseries
Gelatine in
medications
All capsules ,
many creams
Sweeteners in
medictions
Asulphamine K ,
malt o dextran ,
maltilol
Caramel colouring
in medications
Any caramel esp
e150
Corn flour – swollen
bowel , cramps,
diarrhoea, vomiting ,
serious pain .
increased reactions
from other triggers.
Shortness of breath
blue lips and chin
Gelatine – wheeziness
, tight chest , swollen
tounge
Bowel symptoms inc
diarrhoea , then onto
flushing , wheeziness
and itching
Swollen tounge, bowel
cramps and diarrhoea,
exhaustion, shakes,
pain from abdomen .
even tiny volume .
In any increased
quantity to full
anaphylaxis
Cats
Cat dander - fur ,
faeces / urine
Cat fur on clothes
and furniture
Itchy skin from contact
, swollen red eyes .
Pervious noted
contact problems @ 17 yrs old I
developed
“
asthma” when living
with new cats
Multiple unknown
cats
Inhaled dander (fur/
urine ) Wheezy chest
, audible wheeze ,
stridor , itchy mouth
/back palette .
Aug 08 - I had 11
cats in my bedroom
2 long term , 9 new
kittens
Changing lots of
cat litter
House dust
mite
“asthma “ irritated
when moving 05
Major DIY jobs /
residual dust
Worst when moving
house due to
disrupting dust and
moving furniture
Have always damp
dusted
Level of dust
dependant
Wheezy chest ,
audible wheeze ,
stridor , cant speak in
whole sentences ,
going blue centrally ,
voice goes , throat
closes
Anaphylaxis
Infection – worst when getting ill and when recovering – I have regular infections - up to
full anaphylaxis
Hormones – mid month and when due on 34 day cycle – flush, wheeze, bone pain up to
full symptoms
Emotional stress ( extreeme )- flush , burn – up to full symptoms
Exercise – swelling moving up body , up to throat and chest
Physical stress , operations , tiredness – itching , swelling – up to full symptoms
Sulphites – see naughty list ( acidic based pathway in lungs leads to broncoocnstriction
, up to full symptoms quickly .
Caramel colouring – E 150 a-d - up to full symptoms , quickly
Corn flour – bowel swelling , spasms and bleeds . frequency and pain – up to full
symptoms on empty stomach
Geltine – flush ++++ burning and wheeziness ++++
Alcohol in anything inc meds , gells , cleaning products , personal care
in blood / drank = quick / full symptoms .
Vinegar again in anything – bowel spasms , frequency , bowel histamine travel = full
symptoms
Heat – dizzy , flush , drowsy – up to full symptoms. Sit under fan 24/7
Low blood sugar – agaitated , shaky , flush , itch , swell – up to full symptoms
High blood sugar – flush , swell , up to full symptoms
High cholesterol – increases number and severity of attacks
Air fresheners – itching mouth face , throat – up to full symptoms
Sulphite fumes from cooking – itching mouth face throat , chest tighten / fill – up to full
symptoms
BBQ fumes – same
DIY stores – polystyrine and paint – hot , flushed , confussed , dizzy , passout
Diesel fumes in traffic – hot , flushed , nausated , vomit – up to full symptoms
Blue powder used for cleaning in hospitals – itchy mouth / face , chest wheeziness
All spray cleaners , cream cleaners – itchy mouth throat , tounge swell , voice drop
– full symptoms
Examples of IGE allergies
Pollen – itch , flush , hot +++ , drowsy while pollen high , chest symptoms
Cats – itch , flush , throat close . traveling cat hair makes me itch
.
House dust – itch flush , swell – full symptoms
Opiates bar codines – itch , vomit +++ , bowel swell
Personal care – No sodium leureth sulphate in products inc toothpaste , no gelatine ,
corn flour or sulphites . – itchy , alochol / sulphites give rash then absorbed slowly
causing chest tightness , short of breath , blue , if ihaled – wheezy
Drugs – Absolute NO’s
CT contrast – iodine
Clexane – low molecular weight heparins , Heparin of any kind
Mycin antibiotics
Ciprofloxicillin
Metroclopamide
Meptid
Plasma expanders
Medical examinaton gel , ecg stickers ( caution will flush )
Beta blockers ,- calcium channel blockers are alternative of choice . Pulse is
commonly fast due to histamine
Tricyclic antidepressants – mix poorly with epipens – VT VF
SSRI’s – changing patients serotonin level leads to increased symptoms . Some
patients have high serotonin , which with ssri , will give a serotonin syndrome
Opiates - Pethididne , Morphine , Fentnyl , buprenmorphine
Full list of drug issues in mast cell disease ;- and levels of histamine which cause
different symptoms ;_ high histamine food avoids
http://www.iainfoctr.com/articles/histamine.php
All thrush treatments inc nystatin
Any capsules – gelatine , corn flour . Check pills for corn flour , Maize starch , pre
gelatainised corn starch / flour / miaze starch . modified maize starch
Check liuqids for – maltilol, Asulphamine K ( potassium ) , caramel colouring
E150 a-d , ascetic acid / viniger . Alcohol.
Beware hand cleaning Alcohol, skin wipes .( Alcohol )
Anesthetic guide on this memory stick alongside articles regards symptoms .
Day to day considerations
I drink 4-5 litres a day to keep up with fluid loss from fluid moving into tissues
through porous blood vessels in mast cell disease , sweating from addisions and
addisions risk of low BP . This is before infection or hyperglycemia or hot weather
. I can lose 2l before swelling is visable in skin .
Only water , fresh- not from concentrate orange juice or tea
Fresh milk
Natural high histamine time – 2 am
Keep me cool to the touch . If I flush fan or 2 ( if hot day ) on full blast .
Only my feet feel cold , giving neurpathic stabbling pains and sensitivity .
If I am drowsy consider – addisions ( low Blood pressure ) , mast cell ( low bloos
pressure ) bone pain = pale , sweaty , drowsy can’t stay awake , infection
triggering addisions and mast cell .
Anaphylaxis gives me microalbinuria ( evidence available )
Post shock , I will be awake for 24 hrs , sleep for 2-3 days, wee large volumes (
from third spacing ), emotional hit . Gradual improvement . 1 week recovery per
dose of epinepherine . Same if not needed epipen .
Infection – likley abcess in axilla ‘s , next chest .
Signs in me – cold ( I am never cold ) ,excessive sleeping – not waking up
properly , high BM’s ( 11or above ) and tachycardia at rest or on minimal exertion
, vomiting . If I am wheezy then I am high risk of having an anaphylaxis before
the antibiotics kick in in 48 hours orally .
PR bleeds
If I bleed PR ( from my bottom ) this is common up to 1 week post reaction /
shock ( even if no epipen needed ). I have double periods . Week one is petieche
( spontanious bleeding from high heparin ) week 2 normal period . Post shock I
get nose bleeds and bleeding gums alongside other bleeds from heparin dump .
Umbilical hernia
Made worse by bowel swelling
Some pics .
Red white and blue
Before – a reaction , through the morning
Pain management
I am a quiet pain person . The quieter I am the worse I feel .
I can get tunnel versioned with pain , unable to do anything / concentrate on it
until I am comfy .
I may appear clock watching when I am in flare as my analgesia wears off a good
hour before its due . Normally the time comes for the next dose before I reach
5/10 pain score
I am in pain all the time even with pain killers . Bone pain – long bones, hips and
shoulders, ribs . Abdomen right upper side constantly , migraines . I have pain in
my feet which is partially neuropathic. If my BM is over 16 they are very sensitive
. If I have true pain its because I have had sulphites .
My pain increases in a reaction . See mast cell symptoms and Addissions
symptoms.
My legs shake . esp on settling at night. I can stop them but it begins again for up
to an hour . If I have an infection or other trigger for a reaction , my legs shake
after I wake up or transfer .
Like many pts I struggle with 1-10 pain descriptions .These are my pain words how I describe my pain 1-10.
1. Skin vv sensitive
2. Skin feels painful to touch
3. Annoying - Pain on touch R side of tummy
4. Niggling - Pain on touch R and Left side of tummy , Pain in back
5. sore - pain in RUQ at rest , shaking legs at rest , back constant pain , can
resolve if sit to one side
6. very sore- pain at rest and on movement , cant get into a comfortable
position , back burning , no comfy position pins and needles in feet ,
7. owww, - pain on stretching up or side to side , pain in feet . Back pain
radiating to sides .
8. owww ( double duration ) - ongoing pain after stretching ( cant wipe myself
) , ongoing back pain on resting , burning in feet
9. Hurting - cant take a deep breath :- pain in R & L side on deep inspiration .
Back pain radiating to sides and up centre of back
10. Seriously hurting - cant take a shallow breath - RUQ or LUQ pain on even
minimal movement , back pain radiating up back into head and round into
flank and chest . vibration causing pain e.g. someone kicking the bed , bus
movements , partner moving in bed .
Analgesia :- I don’t consider anything less than 5/10 worth mentioning unless
asked . When I walk the pain is unbearable with 1-2 mins and I have to sit down
I am on Oxycodone 15mg twice a day . I take codeine 30mg-60mg 4 times a
day. The codeine is to settle my bowel . Paracetamol 1g 4 x a day.
I don’t get constipated .
I can not have NSAIDS, tramadol , Meptid , morphines, pethidine . I have
tolerated fentnyl, but the patch glue was an issue .
I find sleep , due to the pain , hardest and I only sleep 2-3 hrs at a time without
waking at best . If I sleep less than this I get exhausted . When vvvvv tired I get
emotional and teary . I am not depressed , just tired . If I can get 2 3-4 hrs sleeps
without waking I feel much better .
I don’t want sleeping pills unless I absolutely have to have them .
In flare I will be awake every hour . I occasionally give myself a 20mg oxycodone
night to be pain free and sleep . in this situation 20mg my abdominal pain comes
through my Oxycodone , with me in permanent pain 6/10+ . This happens
because my bowel swells causing abdominal pain.
Second pic – just before an anaphylaxis
Third pic – red , swollen and burning rash
Fourth pic – blue chin and swollen lip
Question 14
Medical teams –
Diabetes / adrenals
Dr Andrew Johnson
Diabetes@nbt.nhs.uk
Southmead hospital
Bristol
0117 9505050
UK mast cell speclaists – treating me now
Dr Grattan @
Contact clinic, St Johns dermatology , St Thomas’ hospital London
clive.grattan@gstt.nhs.uk
OT –
Victoria Toal
South glos adult social services
01454
Report
Social worker
Dawn Hughes
South Glos
Report
Community nursing team
@concorde medical centre , Braydon avenue , little stoke, bristol
01454 616767
Pharmacist
Kate , Lloyds pharmacy , braydon avenue , little stoke , Bristol , BS34 6BQ
Medacs home care provide my care package currently 11 hrs aweek. . 30mins am, 45 mins tea
time daily and 3hrs domestic a week .
Social worker has reassessed and it awaiting notice from panel on –
3hrs social a week , 30mins lunchtime and an extra 15 minutes teatime to allow me a shower
everyday . My food needs to be cooked fresh every day- see mast cell details
Please contact Rebecca – 01179 506027
Investigations
Oct 09 – urine collection for pheocryocythoma – negative
Feb 10 – investigative laparoscopy by gyne ? endometriosis- negative
March 10 – mast cell tryptase – normal
March 10, admission and incision and drainage of axillary abcess
April 10 – axillary swab of bright green exudate
May 10 – admission for steroid weaning . tests for IGG , IGE and IGA, myloma – negative . 9am
cortisol- no cortisol being made , short snachten test – no adrenal activity = addissions . fasting
glucose borderline 6.1 , fasting cholesterol – triglycerides 75 = type 2 diabetes with metabolic
syndrome and hypertriglycerideemia . oral meds commenced but contained mast cell triggers
so galrgine insulin commenced at night .
During admission – flexible sigmoidoscopy for lower bowel bleeding- nad . no further testing
sought by consultanat
July 10 – thyroid pyroxidease antibody level – negative .
July 10 – Gyne review ? polycystic overian syndrome , as a possible explaintion of high
cholesterol , negative on scan dated may 09
Sept 10 – admission London – patch tests and prick test for sodium metabisulphite and 72 other
substances . excluding true allergy to these . carciniod syndrome . conclusion – anaphlictiod
idiosyncratic reactions to triggers .
Jan 11 – tryptase, full rheumatology work up- thyroid pyroxidase antibody level, adrenal
antibodies, blood for plasma pharesis , compliment traditional and alternative pathways ,
myloma screen
All neg, tryptase normal , cortisol med range- but I had had my morning steroids
Jan 11 – HBAIC , cholesterol and u&e and 9am cortisol – HBAIC 9. cholesterol high , u&e normal .
9 am cortisol vvlow, continuing to demonstrate idiopathic Addissions
Feb11 – cholesterol high
March 19th – hbaic , total glucose , cholesterol – hbaic- 23 , triglycerides greater than 75
March 20th fasting cholesterol – triglycerides greater than 75, low uria and creatinine and
deranged lft levels . Admitted for diabetic and cholesterol management . Amalyse negative so
narrowly avoided pancretitis .
Triglycerides – 12 on discharge . on insulin pre meal and cholesterol medication
June – fasting cholesterol – triglycerides now 9
August – fasting cholesterol – triglycerides 7 , Hbiaic less than 10
November – fasting cholesterol u&e. lft , - hbiac – remain within previous levels
Jan 12 ( London ) diagnosis of idiopathic angiodeama and anaphylaxis
Jan 12 – triglycerides rising , hbiac 12 , amylyase normal
Feb 18th- mast cell tryptase and full work up a&E – normal
March 12 – triglycerides stable, hbiac below 10
Booked –
Urology , smear , diabetic eye test .
Bloods before diabetic appointment in June – hbiac, fasting cholesterol lfts , U&e
Social
11.5 hrs a week, awaiting panel for 16.5hrs
Current in black new in red
Daily
Am
30mins –breakfast , meds, commodes, help I need
Lunch
Refill jugs, commodes, check how I am as on bad mornings bp low, I could be very unwell
Tea
45 minutes – prepare meal, commodes, fluids, make bed, do washing, every other day – assisted
shower with all care
15mins – to make having a meal and a shower possible daily . I have to have fresh meals
prepared daily
Domestic- 3hrs a week
All domestic care, shopping, laundry , tiding, bins, recycling ,collect medications
Social – 3hrs a week to get me out of the house I need a carer due to anaphylaxis risk .
Equipement
Piper lifeline , enables me to call help when I cant speak due to anapahylaxis closing my throat,
hypoglycemia or adrenal crisis .
Prescribed by a medical professional
Adapted bathroom- to enable carers to assist me in showering . To reduce my exertion to
shower to make it possible for me on more than just good days . With this my legs still go blue
but it doesn’t make me so low on oxygen I get angry ( hypoxia) . my lungs alswys have adegree
of fluid in them reducing my oxygen supply .
Prescribed by a medical professional
Extrernal ramp to front and rear of property with level access threshold and door wide for
manual wheelchair and up coming electric wheelchair .
Prescribed by a medical professional
Rise and recline chair
To assist my comfort with pain , to keep my legs up, which swell when hanging for more than 10
minutes , which puts pressure on nerves and makes them shake . To allow my legs to settle after
moving because it makes them visibly shake . My pelvis is congested with swelling in organs
which also presses on my nerves serving my legs . My muscles also don’t get enough oxygen so
tire very very quickly. To assist me to stand , to allow me to lie down without moving when my
blood pressure goes low .
Prescribed by a medical professional but they couldn’t supply it. I was given it from freecycle
Sofa raiser
To enable me to sit with a family member when I have company and rise and sit safely
Prescribed by a medical professional
Memory foam mattress
This aids my comfort in bed reducing transmitted vibrations to me . My legs still shake for a hour
on settling but is not all night unless I am brewing an anaphylaxis , infection or have
encountered certain triggers .
Advised but not prescribed due to cost to me
3 pedalsal fans
To keep me cool. I need to be cool to the touch not to be feeling hot inside. My flushes are dry
consistent with mast cell disease . I have one running 24/7 even in winter. 2 or 3 on hot days . if I
get hot I will swell and pass out.
Need recognized but not prescribed
Air purifier
To clear the air of dust, grass pollen and other inhalants which are known to trigger me
Not prescribed