Tick Talk Ireland Survey on Lyme Diseaseticktalkireland.org/wp-content/uploads/2020/05/SurveySummary_Lym… · Tick Talk Ireland Survey on Lyme Disease Europe Answer Options Other

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


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


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


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?


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?


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)*


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


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


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*


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


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


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


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

Documents

Tick Talk Ireland Survey on Lyme Diseaseticktalkireland.org/wp-content/uploads/2020/05/SurveySummary_Lym… · Tick Talk Ireland Survey on Lyme Disease Europe Answer Options Other