tick talk ireland survey on lyme...
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Response
PercentResponse Count
Summary
5.4% 9 Republic Ireland 64%
64.5% 107 North America 18%
12.0% 20 UK/Europe 17%
18.1% 30
24
166
14
NB: tally counts to 180, these are 177 respondents but 3 were infected in 2 different countries
Other specified*
Africa or Ireland = 1
Asia, Aus or NZ = 1
Canada = 1
Think in Ireland = 3
Ireland AND UK = 1
Ireland or Europe = 2
Ireland or US = 3
Most likely USA = 3
Holland = 1
N Ireland = 2Unknown = 4
Indonesia = 1
Ireland + possibly croatia = 1
Total (placed in other) = 24
skipped question
Which country were you infected (if known)?
North America
UK
answered question
Tick Talk Ireland Survey on Lyme Disease
Europe
Answer Options
Other (please specify)
Ireland
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
UK Ireland Europe North America
Which country were you infected (if known)?
Response
Count
166
166
14
Alberta, Canada = 1
Antrim, N. Ireland = 1
Aran Islands, Ireland = 2
Athlone, Ireland = 1Bonn, Germany = 1
Boston, US = 2
California, US = 1Cavan, Ireland = 1
Cavan / Fermanagh border
Central America = 1Clare, Ireland = 2
Conneticut, US = 3
Cork, Ireland = 8
Cork/Limerick border = 1
Cork/Waterford/Wicklow/Dublin
County Down, NI = 1
Croatia = 2
Czech Republic = 1
Delaware = 2
Devon, UK = 1
Donegal, Ireland = 5 UK = 9 Summary
Dublin, Ireland = 4 Ireland = 107 Republic Ireland 64%
Dublin or Clare = 1 Europe = 20 North America 18%
Dublin, Kildare or Mayo = 1 N America =30 UK/Europe 17%
Essex, UK = 1Florida, US = 1 Total in 4 categories = 166
France = 1
Galway, Ireland = 16
Germany = 3
Holland = 3
Hungary = 1
Isle of Man = 1
Tick Talk Ireland Survey on Lyme Disease
Which particular county, state, province or area do you believe you
were infected? (for instance answer Ireland above and County
Answer Options
answered questionskipped question
5.4%
64.5%
12.0%
18.1%
UK Ireland Europe North America
Which area were you infected (if known)? -see left for detailed list
Italy = 1
Kerry, Ireland = 27
Kildare = 1
Kildare or Wicklow, Ireland = 2
Kilkenny, Ireland = 3
Kos, Greece = 1
Leitrim = 1
Leinster = 1
Limerick, Ireland = 3
Louth, Ireland = 3
Massashusetts, US = 2
Maryland, US = 1
Mayo, Ireland = 5
Montauk New York = 1
Nashville, US = 1
New Hampshire, US = 2
New Jersey, US = 3
New York State, US = 1
North Carolina, US = 1
Nottingham = 1
Ontario, Canada = 2
Pennsylvania, US = 1
Poland = 1
Portugal = 1
Roscommon, Ireland = 2
Scotland = 1
Slovenia = 1
Somerset = 1
Sweden = 1
Somewhere in Europe = 2
Somewhere in Ireland = 1
Somewhere in USA = 2
Tipperary, Ireland = 4
Tipperary, Galway or Derry?
Tyrone/Donegal border = 1
Waterford, Ireland = 2
West Cork/West Kerry = 1
Wexford = 1
Wexford/Wicklow = 1
Wicklow, Ireland = 4
Wisconsin = 1
Wyoming, US = 1
Total = 166
Response
Count
167
167
10
Attending a Wedding 1 1%
climbing trees 1 1%
during childhood/teens 1 1%
from infected cat 1 1%
holiday in countryside 1 1%
hunting 1 1%
picnic by sea 1 1%
sunbathing 1 1%
travelling 1 1%
Trip to see Santa (donegal) 1 1%
Visiting family 1 1%
visit house where dog slept on bed 1 1%
walking on mountain 2 1%
from family pet 2 1%
jogging 2 1%
sleeping 3 2%
walking / playing dogs 4 2%
hillwalking 4 2%
outdoor sports 4 2%
farm 5 3%
playing in fields / farm / heather 5 3%
working in countryside 7 4%
live in rural area 8 5%
camping 10 6%
in garden 15 9%
unknown 23 14%
walking woods / park / beach 61 37%
167 100%
176
Tick Talk Ireland Survey on Lyme Disease
What activity were you doing at the time of infection? (for instance walking
in woods, gardening, fishing etc.)
Answer Options
answered question
skipped question
0 5 10 15 20 25
Attending a Wedding
climbing trees
during childhood/teens
from infected cat
holiday in countryside
hunting
picnic by sea
sunbathing
travelling
Trip to see Santa (donegal)
Visiting family
visit house where dog slept on bed
walking on mountain
from family pet
jogging
sleeping
walking / playing dogs
hillwalking
outdoor sports
farm
playing in fields / farm / heather
working in countryside
live in rural area
camping
in garden
unknown
Activity when infected (%)
Response Percent Response Count
100% 174
97% 169
93% 162
83% 145
95% 165
174
3
Before Diagnosis After Diagnosis Total Years How long from tick bite? Cont or relpases?
0 -3 months = 46 0 -3 months = 53 0 -3 months = 16 1 week or less = 26 cont ill health = 95
3 -6 months = 10 3 -6 months = 11 3 -6 months = 5 2 - 4 weeks = 41 relapses = 26
6-12 months = 12 6-12 months = 21 6-12 months = 13 1 - 6 months = 25 skipped question = 32
1- 2 years = 17 1- 2 years = 21 1- 2 years = 22 1 - 2 years = 7 both = 7
2 - 4 years = 25 2 - 4 years = 22 2 - 4 years = 28 2 - 5 years = 3 improving = 7
4 - 6 years = 16 4 - 6 years = 15 4 - 6 years = 11 5 -10 years = 2 rash only symptom (tested early) = 3
6 - 8 years = 11 6 - 8 years = 2 6 - 8 years = 12 10-15 years = 1 early stage = 3
8 - 10 years = 6 8 - 10 years = 5 8 - 10 years = 9 more than 15 years = 2 not diagnosed = 1
10 - 15 years = 12 10 - 15 years = 3 10 - 15 years = 19 unknown = 56 didn't stipulate = 3
15-20 years = 11 many years = 1 15 years or more = 17 skipped = 12
many years = 2 15 years or more = 1 prophylaxis = 1 not ill as treated immed = 1 Total 177
unknown = 4 propylaxis = 1 many years = 2 not diagnosed = 1
preventative = 1 unknown = 10 unknown = 6
skipped = 3 awaiting treatment = 2 skipped = 15
not yet diagnosed = 1 skipped = 8 not yet diagnosed = 1not yet diagnosed = 1
Total 177 Total 177 Total 177 Total 177 Total 177
A year or more = 100 A year or more = 70 A year or more = 120 A year or more = 15 cont ill health = 95
Within a year = 68 Within a year = 85 Within a year = 34 Within a year = 92 relapses = 26
Unknown = 4 unknown= 10 Unknown = 6 Unknown = 56 both = 7
Not yet diagnosed = 1 Not yet diagnosed = 1 Not yet diagnosed = 1 n/a = 1 rash only symptom (tested early) = 3
Skipped = 3 Skipped = 8 Skipped = 15 skipped = 12 skipped = 32 / didn't say = 3
preventative = 1 propylaxis = 1 prophylaxis = 1 Not yet diagnosed = 1 improving = 7
awaiting treatment = 2 early stage = 3 / not diagnosed = 1
Summary Before Diagnosis After Diagnosis Total years
How long from bite to
becoming ill? Summary
Cont ill
health /
relapses?
% % % % %
A year or more 56 40 68 8 Cont ill health 54
Within a year 38 48 19 52 Relapses 15
Unknown 2 6 3 32 Cont/Relapses 4
N/A 1 2 1 1 Early Stage/Rash 3
Skipped 2 5 8 7 Improving 4
N/A 1
Skipped 20
Total percent 100 100 100 100 Total percent 100
skipped question
How long have you been suffering from Lyme Disease?
Continuous ill health or through relapses?
How long were you ill BEFORE diagnosis?
answered question
Tick Talk Ireland Survey on Lyme Disease
Total number of years?
Answer Options
How long from tick bite before becoming ill?
How long were you ill AFTER diagnosis?
6870
80Length of time of illness before & after diagnosis
Before Diagnosis %
After Diagnosis % 5460
Cont ill health or relapses?
56
38
2 1 2
40
48
62
5
68
19
31
88
52
32
1
7
0
10
20
30
40
50
60
70
A year or more Within a year Unknown N/A Skipped
After Diagnosis %
Total years %
How long from bite to becoming ill? %
54
15
4 3 41
20
0
10
20
30
40
50
60
Cont ill health or relapses?
Cont ill health / relapses? %
Response PercentResponse
Count
64% 109
52% 89 NB some answered in more than one column ie public & private
72% 122
170
7
Public Sector Private Labs Clinical
Elisa = 20 Igenex = 13 Clinical plus tests = 81
Western Blot = 21 Igenex & Melisa LTT = 1 Clinical only = 30
Elisa + WB = 24 Private / unspecified = 14 other infection = 1
awaiting results = 6 N/A = 10 lumber puncture = 2
negative = 15 Melisa LTT / BCA (CD57) = 1 symptoms ignored = 1
PCR = 2 Southampton (Elisa?) = 1 tests ignored = 3
co-infections = 1 Germany WB = 1 not yet diagnosed = 3
unknown = 12 Medical Centre Cologne = 1 N/A = 1
german test thru HSE = 6 PCR analysis = 1
Tests+lumbar puncture = 1 US & German Labs = 2
told false pos = 1 Infectolabs/BCA = 13
unsure = 2
Arminlab = 23
Melisa LTT = 1
German unspecified = 3
Armin/BCA = 1
awaiting diagnosis = 1Total 109 Total 89 Total 122
Public sector only = 55 Private sector only = 44 Clinical plus tests = 81
both private/public = 31 both private/public = 31 Clinical only = 30
awaiting results = 6 n/a = 10 other infection = 1
negative = 14 unsure = 2 lumber puncture = 2
1 was told false positive 1 co-infections symptoms ignored = 1
1 co-infections 1 awaiting result tests ignored = 3
1 don't know not yet diagnosed = 3
N/A = 1
Total 109 Total 89 Total 122
skipped question
Private labs. for instance Melisa LTT, BCA LTT, Igenex etc?
How were you diagnosed?
answered question
Elisa and/or Western Blot testing through the HSE or NHS?
Tick Talk Ireland Survey on Lyme Disease
Clinical diagnosis ie. from rash, history of tick bite and symptoms?
Answer Options
0%
10%
20%
30%
40%
50%
60%
70%
80%
Elisa and/or Western Blottesting through the HSE or
NHS?
Private labs. for instanceMelisa LTT, BCA LTT,
Igenex etc?
Clinical diagnosis ie. fromrash, history of tick bite and
symptoms?
How were you diagnosed?
Response Percent Response Count
15% 13
32% 28
66% 57
2% 2
41% 36
80
87
90
*(PS. some selected more than one answer - per breakdown below)
MS FMS CFS Parkinson's Psychiatric Other*
MS only = 8 FMS only = 6 CFS only = 28 Park only =0 Psych only = 12 addicted to antibiotics = 1
MS/CFS/Psych = 1 MS/CFS/Psych = 1 MS/CFS/Psych = 1 ALL OF THE ABOVE
MS/CFS/FM =2 MS/CFS/FM =2 MS/CFS/FM =2 Allergies and possible Lupus = 1
MS/Park = 1 MS/Park = 1 Also Myestinia Gravis and Gullian Barrea Syndrom
FMS/CFS/Psych = 10 FMS/CFS/Psych = 10 FMS/CFS/Psych = 10 Ankylosingspondilitis = 3
FMS/CFS = 6 FMS/CFS = 6 arthritic joint pain/ chest pain = 1
FMS/Psych = 3 FMS/Psych = 3 Arthritis = 4
CFS/Psych = 9 CFS/Psych = 9 arthritis, abdominal pain, short of breath
MS/FMS/CFS/Park/Psy = 1 MS/FMS/CFS/Park/Psy = 1 MS/FMS/CFS/Park/Psy = 1 MS/FMS/CFS/Park/Psy = 1 MS/FMS/CFS/Park/Psy = 1 belpllasey .migraine ,panic attacks ,stress .depression = 1
cellulitus lymphodeama = 1
Total 13 Total 28 Total 57 Total 2 Total 36 coeliac, was being investigated for MS, CFS and myasthenia gravis at diagnoses point
Crohns = 1
depression/psychosomatic/anxiety = 6
Drepression, Vertigo, IBS, Artitits = 1
encephalytis, eipilepsy, arthtitis = 1
glandular fever = 1
Growth pain, Heart Murmurs/irregularity=1
Guillian Barre = 1
Hashimotos. Depression. Hypertension.
Heart palpitations. GERD.
i was not listened to... i feel a serious injustice was done to me..
infected insect bite = 1
initially thought to be skin condition exyema=1
ME=1
mieners disease, eye problems, tears in my knees, TMJ, arteritis in my shoulder,
autoimmune positive in bloods, abnormormal red blood cell, etc=1
Mono = 1
MRI for MS (didn't attend) = 1
MRI scan 2007 for MS/Parkinsons, results negative = 1
MS = 1
MS/Lupus = 1
N/A = 15
Neralgia, Upper Respitary Infection, Eustachian Tube Dysfunction, Upper Neck Injury,
Possible Fractured Skull, Fungal Infection, Sinisitus = 1
No. However I had CFS from a co-infection with chlamydophila pneumoniae. However
doctors were not able to diagnose this either despite me describing text book symptoms.
None, I have child with Autism, no time to be ill=1
Not sure if officially diagnosed as I haven't seen my notes but these terms were always
referred to and proposed by G.P's. Consultant neurologist had a differential diagnosis of
sarcoidosis/MS
Occipital neuralgia. Osteoporosis. Depression.
polymyalgia rheumatica the first infection around 26 years ago
Post Lyme CFS = 1
Post viral=1
Post vital fatigue, hip bursitis (bilateral trochanteric), ovarian cyst, physical therapy for joint
pain presumed due to running strains & training = 1
Parkinson's Disease
Multiple Sclerosis (MS)
Other (please specify)*
Tick Talk Ireland Survey on Lyme Disease
Chronic Fatigue Syndrome (CFS/ ME)
skipped question
Answer Options
Psychiatric Disorder
Fibromyalgia (FMS)
answered question*
Were you previously misdiagnosed with another illness?
0%
10%
20%
30%
40%
50%
60%
70%
MultipleSclerosis (MS)
Fibromyalgia(FMS)
Chronic FatigueSyndrome (CFS/
ME)
Parkinson'sDisease
PsychiatricDisorder
Were you previously misdiagnosed with another illness?
POTS, Anxiety, Depression,
Public health still testing me with thoughts that i have Ms as the antibody tests were
negative. Western blot was never performed or specialised bloods
RA = 1
ruled out many others (myofascial syndrome)
Sarcoidosis, Ankylosing Spondylitis, and possible Rheumatoid Arthritis = 1
self diagnosis = 1
Seronegative rheumatoid arthritis and hypermobility syndrome
stress = 1
suposedly making it up=1
virus = 4
virus possibly strep infevtion and post viral fatigue, stress-related
symptoms/fibromyalgia/cfs/"all in your head" psychological or "adjustment disorder"
psychiatric/neve ain without a cause/"just get on with it (life)"/ constantly symptoms were
doubted and completely dismissed
West Nile Meningitis,Motor neuron disease = 1
when rash appeared after first negative elisa test doctor didn't know what it was but said it
couldn't be Lymes because of negative elisa test
Total 13 Total 28 Total 57 Total 2 Total 36 Total 80
Answer Options Response Percent Response
profound fatigue 84% 147
weakness 82% 142
muscle aches 80% 139
poor concentration 78% 135
migratory joint pain (with no swelling) 72% 126
tingling/numbness 71% 124
headaches 69% 120
stiff neck 69% 120
brain fog 68% 118
dizziness 68% 118
poor memory 67% 117
sleep disorders 67% 117
stiffness 65% 113
poor word recall 63% 110
back pain 58% 101
anxiety 57% 100
nausea/queasiness 55% 95
palpitations 54% 94
shortness of breath 53% 93
itchy/tender skin 53% 92
visual disturbances 51% 88
swollen glands 50% 87
sore throat 49% 86
chills/rigours 45% 79
shaking/tremours 45% 79
lack of libido 45% 78
depression 44% 77
tinnitus 41% 72
low temperature 41% 71
chest pain 40% 70
high temperature 40% 69
erythema migrans (EM) rash at start of illness 40% 69
ear pain 38% 66
foot pain 38% 66
pelvic pains 36% 62
bladder problems 34% 59
arthritic joint pain (with swelling) 33% 58
TMJ (jaw pain) 33% 57
panic attacks 30% 52
bowel problems 30% 52
bell's palsy 25% 44
multiple EM rashes during illness 20% 35
liver problems 19% 33
dyslexia 18% 31
ACA (thinning of skin) 16% 28
kidney problems 16% 28
foot drop 13% 22
heart block 5% 8
Other, including co-infections (please specify) 37% 64
174
3
*Breakdown of 'other' Average number symptomsAll co infections, parasites, SIBO, candida 0 - 10 symptoms = 29
asthma .severe eye pain photophobia 10 - 20 symptoms = 38
Babesia 20 - 30 symptoms = 61
Babesia, Bartonella, Erlichia, Mycoplasma Pneumoniae 30 - 40 symptoms = 40
bad hair loss,sinusitis,dry cough,pains in shoulder 40-50 symptoms = 6
answered question
Tick Talk Ireland Survey on Lyme Disease
Which (regular) symptoms have you had during the course of the illness? (select all that apply)
skipped question
84%82%
80%78%
72%71%
69%69%
68%68%
67%67%
65%63%
58%57%
55%54%
53%53%
51%50%
49%45%45%
45%44%
41%41%
40%40%40%
38%38%
36%34%
33%33%
30%30%
25%20%
19%18%
16%16%
13%5%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
profound fatigue
muscle aches
migratory joint pain (with no swelling)
headaches
brain fog
poor memory
stiffness
back pain
nausea/queasiness
shortness of breath
visual disturbances
sore throat
shaking/tremours
depression
low temperature
high temperature
ear pain
pelvic pains
arthritic joint pain (with swelling)
panic attacks
bell's palsy
liver problems
ACA (thinning of skin)
foot drop
Symptoms in Percentage Order
Bartenolls Babesia skipped = 2
Bartonella, Babesia and mycoplasma infections =1 prophylaxis = 1 (count as skipped as no symptoms) bartonella, babesia, chlamydia p. Total 177
Bartonella, Erlichia
Blasto Hominis
Cysts. Crawling sensations in ears and on skin. Severe
nerve pain. Aches and pains like been hit by a bus, heavy
body.Disproportionate emotions.
chlamydia pneumonia = 3 Percent
Chlamydia pneumonia and yersinia 0 - 10 symptoms = 16%
Chronic dry cough 10 - 20 symptoms = 21%
clamydiae pneumniae positive, weak positive ANA test 20 - 30 symptoms = 34%
Conjunctivits, keretits, episcleritis 30 - 40 symptoms = 23%
decrease in congnitive skills 40-50 symptoms = 3%
Feeling suicidal skipped = 1%
food intolerances, digestive problems, bloating prophylaxis = 1% (count as skipped as no symptoms)Going from being a healthy 35-year old who had hardly
been ill a day in his life to feeling like an 80-year old. Total 100% (rounded)
hair loss
heart failure, co infections of ehrlichia and chlamydia
pneumoniae
heart stint
Held a scar after the bite
irregular periods, nose bleeds, intense mood
swings/aggresion,weight gain
Just general unwell tired,headache etc
Left side auditory nerve pain, severe at times of stress
light and noise sensitivity
Liver problems ssince at least 2009 (NASH) but assume no
relationship.
liver spots, paresthesia in face, twitching in muscles,
decreased hearing, exercise intolerance, irritability,
agitation, anger, night sweats, peri-orbital eye swelling,
pink eye, heaviness in chest, air hunger, severe skin
breakout (cystic acne and blackheads all over my face,
neck and inside and outside ears at the start, then it
reduced but remained one-sided on l cheek and neck for
another 7 years)
loads
loss of ability to walk
Lymphocytoma on breast/nipple area with discharge; 1st
Trimester miscarriage December 2001; Severe weight loss
of 1/3 bodyweight; bruise-like rashes and deep bone pain
from Bartonella;
mieners disease, eye problems, tears in my knees, TMJ,
arteritis in my shoulder, autoimmune positive in bloods,
abnormormal red blood cell, etc
mitral valve prolapse. low energy
MS like symptoms
muscel wastage in one legMycoplasma pneumoniae, coxsackie Virus,
Erlichia/anaplasma, Parasites: Klebsiella pneumoniae,
blastocystis hominis, Low thyroid and adrenal function,
lowered immunity - respiratory and bladder infections
Mycroplasma Fermentans, vasculitis in the Brain = 1
nerve pain emanating from cranial nerve attack =1
Neurological pain, migraine, involuntary movements,
weakness
Neuropathy. Inexplicable feeling as if all my nerves are
damaged and on high alert. Experiencing uncontrollable
urges to binge eat on high carbohydrate food
Night sweat, flu like aches, floating spots, tired heavy eyes
and eyelids. Difficulty opening eyes each morning, Carpal
tunnel,
Occipital neuralgia Paralysis
Paralysis from neck down,hair loss,urinary retention
pnuemonia
post exertional relapse
Rage, Mood swings, Loss of periods/early menopause,
adrenal burnout
require exploratory exams to determine damage
Sarcoidosis
seisures, skin alergey extreme reaction
Septicaemia,pulmonary odema,meningitis
severe abdominal pain, change of personality
Sinus infections, ear infections and pneumonia
soles of my feet painful
sweats, vomiting, right knee pain (had to use a cane for
several months), very itchy rash on legs for several months,
dry cough, difficulty swallowing,
Twitches
uncontrollable attacks of angerUveitis, positive Bartonella, clinical babesia diagnosed
various types of seizures
yersinia ehrlichia e.b.v. chlamydia pneumonia and some
others
Co-infections
Babesia = 6
Bartonella = 6
Ehrlichia = 5
Mycoplasma = 4
Chlamydia Pn = 6
Yersinia = 2
Other
Abdominal pain (severe)
Adrenal Problems = 2
Aches & pains
Air hunger
ANA weak positive
Asthma
Bladder Infections
Blastohominis
Bowel problems
Bruises, bone pain
Candida
Carpal Tunnel
Change of personality
Cognitive Problems
Conjunctivitis, keratitis
Cough = 3
Cracking Neck
Crawling sensations
Cysts
Difficulty swallowing
Ear infections
Eating Disorders
Emotional
Exercise intolerance
Eye swellings / pink eye
Faitigue
Feeling old (at 35)
Fluey symptoms = 2
Food intolerances
Hair Loss = 3
Headache
Heart failure =2
Hearing problems
Heavy body
Heavy chest
Involuntary Movement
Irregular Periods = 2
Irritability / agitation
Joint Pain
Kidney Pain
Light, noise sensitivity =2
Liver problems
Liver spots
Loss of mobility
Lyme rage = 3
Lymphocytoma
Malaise
Meniere's
Migraines
Mitral Valve Prolapse
Mood Swings
MS like symptoms
Muscle Wastage
Nerve Pain = 4
Nose bleeds
Occipital Neuralgia
Pains Souls of feet
Paralysis =2
Parasites = 2
Parathesia in face
Photophobia
Pneumonia = 3
Post Exertional Relapse
Respiratory Infection
Sarcidosis
Scar from bite
Seizures = 2
Septacemia
Sinusitis = 2
Skin allergy
Skin problems (acne)
Suicidal
Sweats = 4
Thyroid Problems
TMJ
Twitching = 2
Uevitis
Urinary retention
Vasculitis
Viral
Vomitting
Weakness
Weight Gain
Weight Loss
Response Percent Response Count
12% 18
15% 22
29% 43
10% 15
1% 2
8% 11
37% 54
146
31
US UK Ireland Germany Switzerland Other* N/A**
US Only = 14 UK only = 11 Ireland only = 38 Germany only = 7 Switz only = 2 France = 1 N/A incs patients able to work with their GP,
US/Ire = 1 US/Ire = 1 Algarve = 1 self treating with herbs or awaiting treatment
US/UK = 2 US/UK = 2 Hungary = 1
UK/Ire/Germany = 3 UK/Ire/Germany = 3 UK/Ire/Germany = 3 Not specified = 8
UK/Germany = 4 UK/Germany = 4 US/UK/Germany = 1 US/UK/Germany = 1 US/UK/Germany = 1
UK/Ire = 1 UK/Ire = 1
Total = 18 Total = 22 Total = 43 Total = 15 Total = 2 Total = 11 Total = 54
Have you seen a private Lyme literate doctor to help you with treatment, diagnosis and/or
maintenance of your condition in any of these countries? (select any that apply)
Germany
skipped question
US
Other*
Tick Talk Ireland Survey on Lyme Disease
Ireland
answered question
Answer Options
Switzerland
UK
N/A**0%5%
10%15%20%25%30%35%40%
Have you seen a private Lyme literate doctor to help you with treatment, diagnosis and/or maintenance of your condition in any of these countries? (select any that
apply)
*Other specified
antibiotics,LDN,Melatonin,probiotics,NAC,Tumeric,Cat's claw, CBD oil. Also: Serc and Stugeron for chronic dizziness/queried
"vertigo & unknown nerve pain". Past: antidepressants prescribed by doctors unfamiliar with my case multiple times- I never
filled prescriptions. Painkillers were nearly the only prescriptions given to me, other than short-term antibiotics, over the years-
but they never made a difference. Throat surgery (invasive/extensive/complicated recovery) in first year of severe illness,
queried Strep infection lodged in tissue, unsuccessful and long complicated unsupported recovery with lasting damage.
Alternatives tried (at own expense) when no diagnosis: physiotherapy and trigger point needles, multiple vitamin supplements,
massage, reflexology, yoga, tai chi and qi'gong, reiki (twice), oregano oil, detox & free-from diet for years without change in
symptoms, exercise with severe consequences, MANDATORY FORCED counselling when university believed it was psychiatric
related due to missing time with disabling unduagnosed illness so it must be "all in your head". Faith healers tried at family's
request.
Response
Percent
Response
Count 8 hours bio resonance therapy every night. Major diet changes niw gluten and sugar free vegan.
67% 112 Alinia(Nitazoxanide)
32% 53 Arcoxia (NSAI)
23% 38 Augmentin, Tindamax, Biaxin
28% 47 Ayurvedic diet, biomagnetic pair therapy
19% 32 Azithromycin rifampicin
21% 36 b vitamin 6,multivitamin,Reiki,
24% 41 Banderol, Ashwagandha, curcumin, grapefruit seed extract, olive leaf
47% 79 biomagnetism = 2
51% 86 by-mycin anti biotics 300mg daily
14% 24 calcium, vit D3, potassium
28% 47 CBD oil
15% 25 ceftriaxone
14% 23 Change of diet
21% 35 chiropractor also bowen technique
12% 20 Chlorella, NT Factor, Chelation, Low Dose Immumotherapy, Indol 3 Carbinol, SOD, Phoschol
4% 6 colloidal silver
5% 9 Currently, Cefuroxime, Rifadin & Azithromycin
21% 36 cyproflaxicin,clarithomycin,vitamins,supplements
11% 18 Doxycycline (400mg/day) and Hydroxychloroquine (400mg/day) for 4 weeks (will continue 4 more weeks)
27% 46 doxycycline teva twice a day for 1 month current
11% 18 dry needling
26% 43 have an appointment now to see an ID doctor in limerick
69 Hyperbaric Oxygen
168 Hyperthermia
9 i will start tritment in week time, massage helps only for few hours
Immunoglobulin,Rocephin,steroids
Immunosuppressant. Deltacortril.
infra red sauna = 3
Just started treatment ongoing changes in treatment I am told?
Low GI high antioxidant diet, High potency licorice supplements to prevent cortisol breakdown and thus raise energy, Osteopathy
Lyme herbals = 2
malarone
MOSTLY PAIN MEDS
Nat. Medicine and Traditional Chinese Medicine = 2
None = 5
Not positive as all are in German but following herbal.orotocol as white cell count too low for antibiotics
Olive leaf and grapefruit leaf extract, NAC, B vits, zinc, magnesium, ATP fuel, Multimessenger (reserached nutritionals),
oral antibiotics
Oxythiocyanate / Hypothiocyanate
Physio, Reiki, Herbal, CBT,
plaquenil for auto-immune
Riamet = 1
Tick Talk Ireland Survey on Lyme Disease
Co-enzyme Q10
answered question
Cephalosporin (e.g zinnat / ceftin)
Questran
Painkillers
Pain Clinic
Answer Options
Acetyl L-Carnitine
Metronidazole (e.g. flagyl)
skipped question
Macrolides (e.g zithromax / erythromycin)
Rife Machine
Probiotics
Massage
Tetracycline (e.g doxycycline)
Cat's Claw / Samento
Intravenous antibiotics
Kinesiology
Homeopathy
Other (please specify)*
Penicillin (e.g amoxicillin)
Low Dose Naltrexone
Antidepressants
Acupuncture
What treatments are you taking now or have tried in the past? (select all that
apply)
Alpha Lipoic Acid
Glutathione
11%
27%
11%
26%
Kinesiology
Acupuncture
Pain Clinic
Massage
What treatments are you taking now or have tried in the past?
Rifampicin = 3
Salt C Protocal
steriods = 3
Strict dietry regime advised by allergy/ chronic fatigue doctor.Have not succeeded in finding Lyme literate doctor in Ireland.
Supplements: Vitamins, Krill oil, Milk thistle,, MEDICATIONS: Hydroxychloroquine, Nystatin, Clarithromycin
Tinidazole
tumeric/bosswellia/bromelain/vit c/maca/glucosamine…
Turmeric, Arctic Root, Melatonin, Low dose naltrexone
Vit D,C, multivit/min, turmeric, chlorella, dig enzymes, probiotics, charcoal, gluten,dairy, egg and sugar free diet
Vitamins,minerals,herbs
Waiting to see dr Lambert to start treatment this month
warmth from electric blanket relieves pain hugely
Total other = 69
67%
32%
23%
28%
19%
21%
24%
47%
51%
14%
28%
15%
14%
21%
12%
4%
5%
21%
11%
0% 10% 20% 30% 40% 50% 60% 70%
Tetracycline (e.g doxycycline)
Penicillin (e.g amoxicillin)
Cephalosporin (e.g zinnat / ceftin)
Macrolides (e.g zithromax /…
Metronidazole (e.g. flagyl)
Intravenous antibiotics
Antidepressants
Painkillers
Probiotics
Glutathione
Co-enzyme Q10
Alpha Lipoic Acid
Acetyl L-Carnitine
Cat's Claw / Samento
Low Dose Naltrexone
Questran
Rife Machine
Homeopathy
Kinesiology
Response Percent Response Count
73% 106
27% 39
33% 48
32% 47
30% 43
145
32
[NB - some answered in multiple selections, of the 145 who answered 73% found antibiotics helpful]skipped question
From the list above enter below which treatments have been the most effective.
Alternative Therapy
Antibiotics
answered question
Tick Talk Ireland Survey on Lyme Disease
Supplements
Answer Options
Other
Painkillers
0%
10%
20%
30%
40%
50%
60%
70%
80%
Antibiotics Painkillers Supplements Alternative Therapy Other
From the list above enter below which treatments have been the most effective.
Antibibiotcs Painkillers supplements Alternative Other*
Alinia Brufen, Voltarol = 1 Alpha Lipoic = 1 Acupuncture = 4
Adrenal support, thryroid
medication, etc = 1
all of them have helped but iv
ceph the most = 1 Cymbalta =1
amino acids, b12 shots,
glutathione,vits, magnesium
= 1 acupuncture/chinese herbs = 1 AccupunctureAmoxicillin azithromycin and
Tinidazole (together) = 1 DF118,TRAMADOL,DIFENE B6 B12 & mag supplyments Acup/massage = 1 anti depressant
amoxicillin and azithromycin Difene black seed oil Acupuncture, massage, exercises Anti inflammatory (Arcoxia)
amoxy = 2 Epsom salt baths, paracetamol, CBD
Cats Claw, Japanese
knotweed and hemp oil etc Art therapies, rest = 1 bi-mycinAmoxy, Riamet, Zithromax,
Doxy = 1 Ixprim for pain
CoQ10, probiotic, Vit B
complex plus B12, = 1 biomagnetism = 1 biomagnetic pair therapy
antibiotics (type not stated) =
46 Lyrica = 1 Gingko = 1 bioreasonance = 1
Combined Doxicyclin with
Chinese therapy
(acupuncture&massage&cu
pping&herbs)antibiotics massave doses IV 9
days = 1 Lyrica, ibuprofen = 1
Glucosimine and EFA good
for joint pain = 1 Buhner herbs = 1 Conventional/holistic
Azithromycin = 1 lyrica and neurontin = 1
Help protect body from
harmful effects of antibiotics CBD Oil (Pain & Anxiety) = 1 Dietry changes = 5
Bicillina-LA injections / Ketek +
Flagyl combo / just starting iv
abx = 1 methadone = 1 helped immune system chinese medicine =1 Digestive enzymes = 1
cephtriaxone = 3 None = 5 high dose vit c chiropractic = 1 flax oil
Clarithtrimycin = 1 Novalgin
Iron, Magnesium, B12,
Glutathione, Chlorella = 1 Cowden Protocol = 3 Green juices to cool the body
Doxy = 8 Nurofen =2 IV micro nutrients=1 Diet & Rest = 1 heat for pain relief = 2
doxycyline and azithromycin
Nurofen helped with bad brain
fog
IV vits and minerals, IV alpha
lipoic acid, IV magnesium,
Colestyramine, Chlorella,
Probiotics dry saunas = 1 homeopathy
Doxycycline and
Hydroxychloroquine are
working oxycontin oxynorm palexia Magnesium Energy Healing = 1 Hyperbaric Oxygen = 1
Rifampid and Doxycycline oxynorm = 2
Magnesium helped with my
rapid heart rate. Vitamin 10
has helped with energy levels,
and heart rate. Probiotics
(including pills, yogurt and
fermented foods) have helped
keep my stomach settled in
spite of high antibiotic
dosages. Epsom salts = 1 massage = 2
Doxy / Zithromax/ Flagyl = 1 Panadol = 1
Magnesium, B Complex, Vit
B6, Vit B12, Fish Oils =1 Herbs = 2
massage and lots of
movement = 1
Doxy, Penicillin = 1 panadine = 1
Magnesium, Vits, Probiotics =
1 Herb tincture, fish oils, probiotic,b12,vit d,N/A = 1Flagyl = 2 Ponstan = 1 Many = 3 Homeopathy = 3 None = 5
flagyl/ztithromax = 1
painkillers (type not stated) =
7 multivits = 4 Kinseology = 5 NSAIs
Intravenous "Ceftriaxone" = 5 Solpadol = 1 N-A C, revive active and high count probiotics Massage = 1
Oxythiocyanate /
Hypothiocyanate = 1
IV abx + Bicillin IM injections = 1
Solpadeine, Nurofen,
Panadine, Surmontil = 1
naltrexone (i think has helped
hugely) = 1 massage and dry needling = 1
Perrin Massage of lymph
system/physiotherapy = 1
IV Ceftriaxone, Doxycycline,
Azithromycin = 1 pregabaline zapain bupremorphin None = 1 NES supplements = 1
plaquenil as bought down
the inflamation and helped
with pain
IV Ceftriaxone, Tinidazole,
Doxycycline = 1 TENS machine / Heat = 1 Olive leaf extract=1 N/A = 1 Quick tick removalIV Ceftriaxone, Zithromax,
Wellvone = 1 didn't help = 1 probiotics = 1 not stated = 4
reflexology,yoga (kundalini-
breath yoga) = 1
IV Ceftriaxone, Azithromycin,
Tetracyclines, Tinidazole = 1 N/A / unsure = 2 Promote detox None = 1 Relax,detox,epsom saltslevaquin, tetracyclines,
rifampin, penicillins = 1 Quensyl ozone/glutathione/B12 = 1 Rest, church & choir = 1
Lycimor,azithromycin teva, zinnat revive active and mastermind and probiotics kombucha and kefir
physiotherapy,occupational
therapy Rife machine / salt C
None = 5 Samento/banderol drops, Probiotics = 1 steroids = 2
Not sure = 2 supplements = 9 Reflexology/Shiatsu/Thai massage still have symptoms
not yet treated = 1
TherBiotic, IV Magnesium,
TriEFA, Formula SF 722,
Liver/GI Detox, Alpha Lipoic
Acid, Pottassium, Chlorella,
Melatonin = 1 Rife = 1 Too early to say
Rifampin = 2 vit c = 1 Thai Massage + TCM unsure
Rifampicin / Azithromycin = 2 Vitamine D 20.000Ui /day = 1
Rocephin,tazocin,gentamycin,m
eropenem = 1 unsure / NA = 2several abx at high doses, all
together = 1
Tetracycline = 1
Tinidazole, Amoxicillin = 1
zithromax, ceftin rifampin
anbx didn't help =1
Total = 106 Total = 39 Total = 48 Total = 47 Total = 43
Alinia = 1 Alpha Lipoic = 2 Acupuncture = 7 Adrenal Support = 1
Amoxy = 6 Brufen = 1 Amino Acids = 1 Art therapy = 1 Accupuncture = 1
Azithromycin = 11 CBD = 1 Black seed oil = 1 Biomagnetism = 1 Anti-depressant = 1Biciilin = 2 Cymbalta =1 Cat's Claw = 1 Bioreasonance = 1 Anti-imflmmatry = 1
Cefuroxime = 2 Difene = 2 Chlorella = 3 CBD Oil = 1 Church & Rest = 1
Clarithtrimycin = 1 Epsom salts = 1 Colestyramine = 1 Chinese Med = 2 Detox = 1
Doxy = 15 Ibuprofen = 1 Co Q10 = 1 Chiropratic = 1 Dietary change = 5
Flagyl = 5 Ixprim = 1 Fish Oils = 1 Cowden Protocol = 3 Digestive enzymes = 1
gentamycin = 1 Lyrica = 4 Gingko = 1 Diet & Rest = 1 Epsom Salts = 1
Hydroxychloroquine = 1 Methadone = 1 Glucosamine = 1 Dry Needling = 1 Flax oil = 1
IV Ceftriaxone = 15 Morphine = 1 Glutathione = 2 Epsom Salts = 1 Heat = 2Ketek = 1 Neurontin = 1 Help immune system = 1 Exercise = 1 Hyperbaric Oxygen = 1
Levaquin = 1 Novalgin = 1 Hemp Oil = 1 Fish oils = 1 Masssage = 4
meropenem = 1 Nurofen = 4 Iron = 1 Glutathione =1 NSAIs = 1
Penciliin = 2 Oxycontin = 1 IV alpha lipoic = 1 Healing = 1
Oxythiocyanate /
Hypothiocyanate = 1
Riamet = 1 Oxynorm = 3 IV magnesium = 1 Herbs = 4 Plaquenil = 1
Rifampin = 7 Palexia = 1 IV micro nutrients=1 Homepathy = 3 Physiotherapy = 1
tazocin = 1 Panadol = 1 IV vits/minerals = 1 Kinseology = 5 Reflexology = 1Tetracycline = 3 Panadine = 2 Japanese Knotweed = 1 Massage = 5 Relaxation = 1Tinidazole = 4 Paractemol = 1 Liver Detox = 1 Ozone = 1 Rife machine = 1Wellvone = 1 Ponstan = 1 Magnesium = 7 Occ Therapy = 1 Salt C = 1
Solpadeine = 2 Melatonin = 1 Physio = 1 Singing = 1
lycimor = tetra Surmontil = 1
Help protect body from
harmful effects of antibiotics =
1 Probiotics = 2 Steroids = 2
zinnat = Cefuroxime TENS machine = 1 Mastermind supplement Reflexology = 1 Thyroid Meds = 1
ceftin = cefuroxime Tramadol = 1 Multivits = 4 Rest = 1 Yoga = 1
Voltarol = 1 NAC supplement Rife = 1
Zapain = 1 Naltrexone = 1 Sauna = 1
Olive leaf extract= 2 Shiatsu = 1
Omega oils = 1 Supplements = 1
Potassium = 1 Vitamins = 1
notes Probiotics = 8
pregabaline = lyrica Promote detox = 1
zapain = codeine Quensyl = 1
Revive supplements = 2
samento/banderol = 1
supplements = 9
Vitamin B = 5
Vitamin C = 2
Vitamin D = 1
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