The Truth Hurts

I have been struggling a lot lately: with how slow this healing process is taking; with how Jack is responding to my illness as he gets older and more fed-up with it himself; with not being able to do the things I want to do, like drive my son to school, or help unpack more than a few boxes a week. My depression is a huge factor in this, as my semi-annual pity-party leads to my indulgence in anger; a decline in having a positive attitude; and so many questions starting with, “Why?”

But tonight—tonight I am upset at more than just my  Lyme. I am upset with ALL THE LYME. I am so angry my mind is spinning and I am dizzy with rage. Normally, the “usual” is enough to get me going. You know— the fact that this disease has taken so much from so many people. That it is extremely difficult to diagnose; and those who do fight for diagnosis and treatment get ridiculed, denied, and beat down by our system at every turn.  That it can cost tens to hundreds of thousands of dollars to treat. Is your blood boiling yet? Mine sure is.

However, it isn’t all of those things that are bothering me especially lately. What is bothering me, is that as if all that wasn’t enough, Lyme is commonly being misdiagnosed— as over THREE HUNDRED other diseases! And I talk and I type and I share until I am blue in the face. I meet new people who do have Lyme, or are legitimately likely to, several times per week. And I know—believe me— I know how hard this information is to digest. And as much as I want to throw in the towel, my conscience won’t let me. I bear this responsibility to make others aware of this disease, and will for the rest of my life.

 I don’t blame others for not listening. For not wanting to hear about this elusive disease that no one wants to recognise or treat. What I can’t stand is that the medical system has failed us all so greatly that I don’t even know how to see the world without Lyme-colored glasses anymore. Could your neighbor with ALS actually have Lyme? What about her daughter, who has been diagnosed with some other “completely unrelated” disease (according to the health care system, that is) both suffering with classic Lyme symptoms?!  OVER three hundred misdiagnosis ! That is something we can’t just ignore. And those who are willing to look into it— to accept that maybe doctors are wrong sometimes, and that one has to fight (harder than they ever imagined, while sicker than they’ve ever known) — just to get a pitifully inaccurate test, that isn’t even necessary for what is supposed to be a clinical diagnosis anyway, isn’t much of an incentive, I know.

I am tired. I am so tired of being sick. My heart hurts from all that I have missed out on. Even more, it hurts that so many others go through this exact same fate, or worse. So, in addition to your prayers, I would ask that you take a look at the list below. It is a list of the many illnesses that people spend years of their lives trying to accept, when they could have been using them to start their fight against Lyme.

These 300 Medical Conditions are related to Lyme Borreliosis:

• Abdominal pseudo-eventration
• Acrodermatitis chronica atrophicans (ACA)
• Acute Acral Ischemia
• Acute conduction disorders
• Acute coronary syndrome
• Acute exogenous psychosis
• Acute meningitis
• Acute myelo-meningo-radiculitis
• Acute peripheral facial palsy
• Acute perimyocarditis
• Acute pyogenic arthritis
• Acute reversible diffuse conduction system disease
• acute transitory auriculoventricular block
• Acute transverse myelitis
• Acute urinary retention
• Acquired Immune Deficiency Syndrome (AIDS)
• Algodystrophy
• Allergic conditions
• Allergic conjunctivitis
• Alopecia
• Alzheimer’s Disease
• Amyotrophic lateral sclerosis
• (ALS – Lou Gehrig’s Disease)
• Amyotrophy
• Anamnesis
• Anetoderma
• Anorexia nervosa
• Antepartum fever
• Anxiety
• Arrhythmia
• Arthralgia
• Arthritis
• Asymmetrical hearing loss
• Atraumatic spontaneous hemarthrosis
• Atrioventricular block
• Attention Deficit Disorder (ADD)
• Attention Deficit Hyperactivity Disorder (ADHD)
• AUTISM 
• Bannwarth’s Syndrome
• Behcet’s disease
• Bell’s Palsy
• Benign cutaneous lymphocytoma
• Benign lymphocytic infiltration (Jessner-Kanof)
• Bilateral carpal tunnel syndrome
• Bilateral facial nerve palsy
• Bilateral follicular conjunctivitis
• Bilateral keratitis
• Bilateral papilloedema
• Biphasic meningoencephalitis
• Bipolar Disorder
• Brain Tumor
• Brown recluse spider bite
• Brown-Sequard syndrome
• Cardiac Disease
• Cardiomegaly
• Cardiomyopathy
• Carditis
• Carpal tunnel syndrome
• Catatonic syndrome
• Cauda equina syndrome
• Central vestibular syndrome
• Cerebellitis
• Cerebral atrophy
• Cerebro-vascular disease
• Cervical facet syndrome
• Cheilitis granulomatosa
• Chiasmal optic neuritis
• Chorea
• Choriocapillaritis
• Chronic encephalomyelitis
• Chronic Fatigue Syndrome
• Chronic muscle weakness
• Chronic urticaria
• Cerebellar ataxia
• Cogan’s syndrome
• Collagenosis
• Complete flaccid paraplegia
• Complex Regional Pain Syndrome (CRPS)
• Concomitant neuroretinitis
• Conduction disorder
• Conus medullaris syndrome
• Coronary aneurysm
• Cortical blindness
• Coxitis
• Cranial Neuritis
• Cranial polyneuritis
• Craniopharyngioma
• Cutaneous B-cell lymphoma
• Dementia
• Demyelinating disorders
• Depression
• Dermatomyositis
• Diaphragmatic paralysis
• Diffuse fasciitis
• Dilated cardiomyopathy
• Diplopia
• Discopathy
• Disseminated choroiditis
• Dorsal epiduritis
• Encephalitis
• Encephalomyelitis
• Encephalopathy
• Endogenous paranoid-hallucinatory syndrome
• Eosinophilia
• Eosinophilic fasciitis (Shulman syndrome)
• Epilepsy
• Epileptic crises
• Episcleritis
• Epstein Barr
• Erythema chronicum migrans
• Exanthema (local and generalized)
• Extrapyramidal disorders
• Facial diplegia
• Fascicular tachycardia
• Fatal adult respiratory distress syndrome
• Fetal death
• Fever
• Fibromyalgia
• Fibrositis
• Focal nodular myositis
• Frontotemporal atrophy
• Generalised motor neuron disease
• Geniculate neuralgia
• Giant cell arteritis
• Gonarthritis
• Granuloma annulare
• Guillain-Barré Syndrome
• HLA-B27 negative sacroiliitis
• Headaches (severe)
• Hearing loss
• Heart block
• Hemiparesis
• Hemophagocytic syndrome
• Hepatic disorders
• Hepatitis
• Herniated discs
• Holmes-Adie syndrome
• Horner’s syndrome
• Human necrotizing splenitis
• Hydrocephalus
• Hyperacusis
• Hyperbilirubinemia
• Hypothyroidism
• Idiopathic atrophoderma of Pasini and Pierini
• (IAPP)
• Idiopathic facial paralysis
• Infarction pain
• Infertility
• Impaired Brainstem response
• Infantile sclero-atrophic lichen
• Infectious Mononucleosis
• Infiltrating lymphadenosis benigna cutis
• Inflammatory cerebrospinal fluid syndrome
• Influenza
• Internuclear ophthalmoplegia
• Interstitial granulomatous dermatitis
• Intracerebral haemorrhage
• Intracranial aneurysm
• Intracranial hypertension
• Intracranial mass lesions
• Intrauterine growth retardation
• Iritis
• Irritable Bowel Syndrome
• Isolated acute myocarditis
• Isolated lymphadenopathy
• Isolated neuritis of the sciatic nerve
• Isolated oculomotor nerve paralysis
• Isolated posterior cord syndrome
• Jaundice
• Juvenile Rheumatoid Arthritis
• Keratitis
• Keratoconus
• Left sided sudden hemiparesis
• Lichen sclerosus
• Livedo racemosa
• Lofgren’s syndrome
• Lupus
• Lymphadenosis benigna cutis
• Lymphocytoma cutis
• Lymphoma
• Lumboradicular syndrome
• Melkersson-Rosenthal syndrome
• Memory impairment
• Meningeal lymphoma
• Meningitis
• Meningoencephalomyelitis,
• Meningoencephalomyeloradiculoneuritis
• Meningoradiculitis
• Migraines
• Mono-arthritis
• Monolateral chorioretinitis
• Morgagni-Adams-Stokes syndrome (MAS)
• Morning glory syndrome
• Morphea
• Motor neuron syndrome
• Multiple mononeuropathy
• Multiple Sclerosis
• Myelopathy
• Myofascial pain syndrome
• Myositis
• Neonatal respiratory distress
• Neuromyotonia
• Nodular panniculitis
• Normal-pressure hydrocephalus (NPH)
• Oculomotor paralysis
• Oligoarthritis
• Opsoclonus-myoclonus syndrome
• Nodular fasciitis
• Non-Hodgkin’s lymphoma
• Obsessive-compulsive disorder
• Optic atrophy
• Optic disk edema
• Organic mood syndrome
• Optic nerve lesion
• Otoneurological Disorders
• Panuveitis
• Papillitis
• Paralysis of abdominal muscles
• Paraneoplastic polyneuropathy
• Paranoia
• Parkinsonism
• Parotitis
• Pars plana vitrectopy
• Parsonage and Turner syndrome
• Peripheral facial palsy
• Peripheral neuropathy
• Peripheral vascular disorder
• Pericarditis
• Perimyocarditis
• Persistent atrioventricular block
• Pigment epitheliitis
• Polymyalgia rheumatica
• Polyneuritis cranialis
• Polyneuropathy
• Polysymptomatic autoimmune disorder
• Porphyrinuria
• Posterior scleritis
• Primary lymphoma of the nervous system
• Presenile dementia
• Progressive cerebral infarction
• Progressive facial hemiatrophy (Parry-Romberg syndrome)
• Progressive stroke
• Progressive supranuclear paralysis
• Prolonged pyrexia
• Propriospinal myoclonus
• Pseudo tumor Cerebrae
• Pseudolymphoma
• Pseudoneoplastic weight loss
• Psychosomatic disorders
• Radiculoneuritis
• Ramsay Hunt syndrome (pleocytosis)
• Raynaud’s syndrome
• Recurrent paralysis
• Reflex sympathetic dystrophy
• Reiter’s Syndrome
• Respiratory failure
• Restless legs syndrome
• Retinal pigment epithelium detachment
• Retinal vasculitis
• Reversible dementia
• Rheumatic Fever
• Rheumatoid Arthritis
• Rhombencephalitis
• Sacro-iliitis infection
• SAPHO syndrome
• Sarcoidosis
• Schizophrenia
• Schoenlein-Henoch purpura
• Scleroderma
• Secondary syphilis
• Seizure Disorders
• Sensorineural Hearing Loss
• Septal panniculitis
• Septic arthritis
• Seventh nerve paralysis
• Sick sinus syndrome
• Spontaneous brain hemorrhage
• Stevens-Johnson syndrome
• Stiff-man syndrome
• Still’s disease
• Stroke
• Subacute Bacterial Endocarditis
• Subacute multiple-site osteomyelitis
• Subacute organic psychosyndrome
• Subacute multiple-site osteomyelitis
• Subacute presenile dementia
• Subarachnoid hemorrhage
• Sudden deafness
• Sudden hemiparesis
• Sudden infant death syndrome (SIDS)
• Sudeck’s atrophy
• Synovitis
• Syphilis
• Symmetric Polyarthritis
• Temporal arteritis
• Temporomandibular joint syndrome
• Thrombocytopenic purpura
• Thyroiditis
• Tourette’s syndrome
• Transient Ischemic Attack
• Transient left ventricular dysfunction
• Trigeminal Neuralgia
• Unilateral interstitial keratitis
• Unilateral papillitis
• Urticaria
• Uveitis
• Vasculitic neuropathy
• Vasculitic mononeuritis multiplex
• Vasculitis
• Ventricular asystole
• Vertigo
• Vestibular neuronitis
• Vitreous clouding

(NutraNews / New Thinking, New Discoveries in Nutraceutical Research, October 2003)

Now I realise that all of the above are legitimate medical diagnoses, and that not everyone has Lyme. My concern lies in the prevalence of Lyme. Over 300,000 cases have been estimated by the Center for Disease Control (the CDC) annually in North America alone. If you do know someone who is being tested for or suffering from any number of the above, please, kindly pass along the following list of symptoms (http://www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf), so that they may have the opportunity that so many others miss out on: awareness.  I would never wish Lyme on anyone, ever. But I think it is only fair to those struggling with their health to have all of the information they are entitled to available to them, and Lyme is one of those possibilities for persons being tested for any of the above. I hope with all my heart that one day, testing for Lyme will be as effective and routine as testing for so many other curable diseases; that the concept of testing for it won’t be alien or scoffed at; that Lyme disease will be genuinely considered, not feared or misunderstood and pushed aside; and that proper treatment will be readily available as soon as it is discovered one needs it.

You need not be the face of Lyme to be a voice for it. Please, help me fight this disease in every way I can.

Blessings and love,

Kate

“Be angry and do not sin; do not let the sun go down on your anger, and give no opportunity to the devil. Let the thief no longer steal, but rather let him labor, doing honest work with his own hands, so that he may have something to share with anyone in need.” Ephesians 4:26-28

“ Know that wisdom is such to your soul; 

if you find it, there will be a future, and your hope will not be cut off. ”  

Proverbs 24:14