Aa
Limbo is hell
I never really knew what hell was until my disease process started. I think the worst part hasn't been the pain, it's been the lack of answers from the medical authorities on what is wrong with me. The Mayo clinic has turned me down for an appointment, as they don't feel there is any more they can do for me that hasn't already been done... and I'm like... NO ONE HAS DONE ANYTHING! It's a nightmare, and my wife and I are so damn frustrated by the whole thing. The worthless neurologist I saw locally had me stand up, put my arms out and then touch my nose. That was it. He said, "you have a head tremor." I was like, no duh, numbnuts, why can't I walk without a cane? He had no answers for that or for any of the other troubling issues that have plagued me since this all began. He dared to suggest I was a drug seeker, and then put me on gabapentin and tramadol. I was livid with his "care" of my case, so I demanded the referral that I speak of at the end of this post. My wife suggested I post up my information to some neurology boards to see if any of it sounds familiar to someone else. Now that you have an idea about what I'm dealing with... here's how I got there...
For many years, at least 15, I had a weird issue crop up every day. I'd develop a mild fever every afternoon, almost like clockwork. It would start up about 1:00 in the afternoon, and slowly climb until about 5:00. By 7:00 it would break. For the most part, it never got above 99.5. Just enough to make me feel ick, but not enough to really consider it much more than a nuisance. My doc wasn't too worried about it, so we never did anything to track the cause. In 2007, I was diagnosed with juvenile diabetes at the age of 34. A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis. I was told I had a hyperactive immune system, and it was attacking some of my organs.
About 2 years ago, something changed. The temperature unexplicably started climbing. First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months. By the time it got to 100.5, my doctor decided it was time to do something. She sent me to see an infectious disease specialist. He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).
He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life. I developed excrutiating pain in the back of my head at the point it meets the neck. A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis. My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly. He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital. I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.
In the months that followed, the pain reduced significantly, but never completely went away. I was still on oxycodone for the pain. In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present. He did a CT and 6 standing x-rays. A month later, he told me he couldn't find anything and sent me to a physical care specialist. That doctor sent me to physical therapy. When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep. I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously. I didn't describe it as pain, but as moderate to severe discomfort. By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away. As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.
Something else started during PT... the head tremor. It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders. I now have occasional (which means most of the time anymore) problems walking and with my speech. I never stuttered before in my life until now. Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode. It was short lived, and I never thought about it again until I developed the constant head tremor. If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.
Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs. These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause. I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs. I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations). I also have high blood pressure, high cholestorol and water retention.
That's it, that's the summary of my medical ills to date. Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer. I was a cop for 11 years. I have little hope of being able to ever return to active duty again. At this point, I have little hope of being able to work outside of the home. I can't drive while medicated, so my options are very limited. If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this. It's a nightmare not knowing. Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled). I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers. The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before. I think the worst part was the neurologist suggesting I was a drug seeker. I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications." I never asked to be put on narcotic pain meds, my doctors made those choices for me. If I could come off of them today, I'd love to. I fear becoming hooked on them.
I have one last hope left now that Mayo has refused to see me. I have the appointment I got after I demanded a referral from the worthless neurologist here in town. I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis. We are praying they can give us some answers, instead of just blindly throwing more medications at me.
For many years, at least 15, I had a weird issue crop up every day. I'd develop a mild fever every afternoon, almost like clockwork. It would start up about 1:00 in the afternoon, and slowly climb until about 5:00. By 7:00 it would break. For the most part, it never got above 99.5. Just enough to make me feel ick, but not enough to really consider it much more than a nuisance. My doc wasn't too worried about it, so we never did anything to track the cause. In 2007, I was diagnosed with juvenile diabetes at the age of 34. A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis. I was told I had a hyperactive immune system, and it was attacking some of my organs.
About 2 years ago, something changed. The temperature unexplicably started climbing. First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months. By the time it got to 100.5, my doctor decided it was time to do something. She sent me to see an infectious disease specialist. He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).
He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life. I developed excrutiating pain in the back of my head at the point it meets the neck. A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis. My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly. He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital. I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.
In the months that followed, the pain reduced significantly, but never completely went away. I was still on oxycodone for the pain. In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present. He did a CT and 6 standing x-rays. A month later, he told me he couldn't find anything and sent me to a physical care specialist. That doctor sent me to physical therapy. When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep. I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously. I didn't describe it as pain, but as moderate to severe discomfort. By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away. As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.
Something else started during PT... the head tremor. It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders. I now have occasional (which means most of the time anymore) problems walking and with my speech. I never stuttered before in my life until now. Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode. It was short lived, and I never thought about it again until I developed the constant head tremor. If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.
Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs. These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause. I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs. I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations). I also have high blood pressure, high cholestorol and water retention.
That's it, that's the summary of my medical ills to date. Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer. I was a cop for 11 years. I have little hope of being able to ever return to active duty again. At this point, I have little hope of being able to work outside of the home. I can't drive while medicated, so my options are very limited. If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this. It's a nightmare not knowing. Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled). I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers. The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before. I think the worst part was the neurologist suggesting I was a drug seeker. I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications." I never asked to be put on narcotic pain meds, my doctors made those choices for me. If I could come off of them today, I'd love to. I fear becoming hooked on them.
I have one last hope left now that Mayo has refused to see me. I have the appointment I got after I demanded a referral from the worthless neurologist here in town. I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis. We are praying they can give us some answers, instead of just blindly throwing more medications at me.
I doubt you could get Lyme from removing a tick from a dog or touching the bite mark, especially if there are no open wounds on the skin. I did read about a guy who got it when he cut himself while cleaning a pheasant without gloves. He quickly developed a full blown case of Lyme. Birds and many mammals, including dogs can have it.
Many people with Lyme never saw the tick that bit them. The nymphs can be tiny, like the size of a poppy seed, and can hide in places like the scalp, behind the ear, in folds of skin, and other places. In Oz, they are seeing cases from the Northeastern coast all the way down into parts of Victoria, with most cases in Queensland and NSW.
Many people with Lyme never saw the tick that bit them. The nymphs can be tiny, like the size of a poppy seed, and can hide in places like the scalp, behind the ear, in folds of skin, and other places. In Oz, they are seeing cases from the Northeastern coast all the way down into parts of Victoria, with most cases in Queensland and NSW.
Lyme spirochete is not just tick-borne; it can also be transmitted by other insects, including fleas, spiders, mosquitoes and mites — and by human-to-human contact
through bodily fluids -blood, saliva,semen - and this would extend to any contact with infected animals.
Many are unsymptomatic, but the Lyme spirichete still gets transmitted, and that
is very tricky, as there's absolutely no suspicion.
Sorry for the bad news, but good in a way, as we can all exercise prevention,
by strengthening our immune systems to the max possible and DISTRESSING!
Have a good day!
Niko
through bodily fluids -blood, saliva,semen - and this would extend to any contact with infected animals.
Many are unsymptomatic, but the Lyme spirichete still gets transmitted, and that
is very tricky, as there's absolutely no suspicion.
Sorry for the bad news, but good in a way, as we can all exercise prevention,
by strengthening our immune systems to the max possible and DISTRESSING!
Have a good day!
Niko
Thank you for the links you sent for me to look at. Recently there had been a program on TV channel about Lyme Disease and I am aware it has similar symptoms to MS.
I had not been bitten by any ticks ever. However we had a working sheep dog in Tasmania which did have ticks, and my husband removed them from the dog. Can you get infected if you touch the area of the dog where the tick was removed from?
I had not been bitten by any ticks ever. However we had a working sheep dog in Tasmania which did have ticks, and my husband removed them from the dog. Can you get infected if you touch the area of the dog where the tick was removed from?
Master Symptom List for Lyme - Part 2
DIGESTIVE/HEPATIC:
Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux; heartburn
Frequent constipation
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food/Substance intolerance
Irritable bowel syndrome
Liver function impaired; mild abnormalities
Increased appetite
Nausea
Spleen tender or enlarged
Stomach ache, cramps
Vomiting
Weight gain or loss
EQUILIBRIUM/PERCEPTION:
Bite your cheeks or tongue frequently
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of balance when standing with eyes closed
Perception (not quite seeing what you are looking at)
Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them
EYES/VISION:
Acuity changes not related to prescription changes
Blind spots
Blurred vision
Conjunctivitis
Diminished visual acuity in absence of actual vision change
Drooping eyelid
Double vision
Eye pain
Flashes of light perceived peripherally
Optic neuritis or atrophy
Oscillopsia (image jiggles)
Prescription changes more frequently
Pressure sensation behind eyes
Red and/or tearing eyes
Retinal damage
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes
Uveitis and/or iritis
Wandering or lazy eye
HEAD/NECK/MOUTH:
Bell's palsy (facial paralysis, one or both sides)
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes, nose and mouth (sicca syndrome)
Pain in ears, palate, gums
Periodontal disease
Prickling pain along skin of jaw
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches
Xerostoma (dry mouth)
MUSCULOSKELETAL:
Joint or arthritic pain not relieved by NSAIDs (i.e., ibuprofen)
Arthritic pain that migrates from joint to joint
Joint pain(arthralgia), without redness or swelling
Carpal tunnel syndrome
Frozen shoulder
Intermittent joint swelling
Loss of tone
"Lumpy, bumpy" long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness
Pyriform muscle syndrome
Reduced range of motion
Stiff neck
Writing causes pain in hand, arm shoulder
PAIN SYMPTOMS:
Abdominal pain
Chest pain
Generalized pain
Pain/stiffness at C1-C2 (top two vertebrae)
Shooting or stabbing pains
PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS:
Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Decreased self-esteem
Depression or depressed mood
Feeling helpless and/or hopeless
Frequent crying for no reason
Inability to enjoy previously enjoyed activities
Irritability; over-reaction
New phobias/irrational fears
Panic attacks
Phobias (irrational fears)
Rage attacks; anger outbursts for little or no reason
Suicidal thoughts or suicide attempts
SENSITIVITIES:
Acute or abnormal reactions to medications
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)
SKIN/NAILS:
Abnormal scarring
Acrodermatitis Chronica Atrophician
Blotchy or mottled skin
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dermographia (minor scratch pressure on skin leaves vivid red welts)
Dry, itchy skin
Easily scar
Eczema or psoriasis
Fragile nails
Frequent skin irritations
Lymphadenosis benigna cutis
Nails that curve under or downward
Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
Painful skin (abnormal/excessive pain when scratched or rubbed)
"Paper" skin (feels fragile, tissue-thin when rubbed)
Rashes on body, face
Vertical ridges or beads in nails
SLEEP SYMPTOMS:
Abnormal brain activity in stage 4 sleep
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep
UROGENITAL/REPRODUCTIVE:
Decreased libido
Discharge from breast or galactorrhea
Endometriosis
Frequent urination
Incontinence
Impotence
Infant: premature; low birth weight; low muscle tone; failure to thrive
Interstitial cystitis
Miscarriage or stillbirth
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Prostate pain
Swollen testicles
Other symptoms worsen before start of menstruation
Worsening of PMS symptoms
OTHER:
Abnormal or other changes in sweating
Activity level reduced to less than 50% of pre-onset level
Burning sensation (internal and/or external)
Changes in sweat odor/body odor
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
Fatigue, prolonged, disabling, made worse by exertion or stress
Fibrocystic breasts
"Galloping" cholesterol and triglycerides
Hair loss (not related to age, hormones, diet, medication)
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Hoarseness / Changed voice
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat
Swelling/Idiopathic edema (fluid retention syndrome)
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Thickened mucus secretions (nose, bowel, vaginal)
Thickened "sleep" around eyes in mornings
Very attractive to biting flies and mosquitoes
Sources:
Fibromyalgia & Chronic Myofascial Pain. Devin Starlanyl & Mary Ellen Copeland. 2001. New Harbinger Publications Inc.
Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. 2001. Katrina Berne. Hunter House Publishing.
The Interface of Chronic Lyme Disease, CFS and FM. Bonnie Gorman. In, The Update. Massachusetts CFIDS & FM Association. 18(3):1, 35-40. Fall 2002.
Arthritis Foundation
American College of Rheumatology
Fibromyalgia Network
Centers for Disease Control & Prevention: CFS
Jay Goldstein, MD.
DIGESTIVE/HEPATIC:
Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux; heartburn
Frequent constipation
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food/Substance intolerance
Irritable bowel syndrome
Liver function impaired; mild abnormalities
Increased appetite
Nausea
Spleen tender or enlarged
Stomach ache, cramps
Vomiting
Weight gain or loss
EQUILIBRIUM/PERCEPTION:
Bite your cheeks or tongue frequently
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of balance when standing with eyes closed
Perception (not quite seeing what you are looking at)
Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them
EYES/VISION:
Acuity changes not related to prescription changes
Blind spots
Blurred vision
Conjunctivitis
Diminished visual acuity in absence of actual vision change
Drooping eyelid
Double vision
Eye pain
Flashes of light perceived peripherally
Optic neuritis or atrophy
Oscillopsia (image jiggles)
Prescription changes more frequently
Pressure sensation behind eyes
Red and/or tearing eyes
Retinal damage
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes
Uveitis and/or iritis
Wandering or lazy eye
HEAD/NECK/MOUTH:
Bell's palsy (facial paralysis, one or both sides)
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes, nose and mouth (sicca syndrome)
Pain in ears, palate, gums
Periodontal disease
Prickling pain along skin of jaw
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches
Xerostoma (dry mouth)
MUSCULOSKELETAL:
Joint or arthritic pain not relieved by NSAIDs (i.e., ibuprofen)
Arthritic pain that migrates from joint to joint
Joint pain(arthralgia), without redness or swelling
Carpal tunnel syndrome
Frozen shoulder
Intermittent joint swelling
Loss of tone
"Lumpy, bumpy" long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness
Pyriform muscle syndrome
Reduced range of motion
Stiff neck
Writing causes pain in hand, arm shoulder
PAIN SYMPTOMS:
Abdominal pain
Chest pain
Generalized pain
Pain/stiffness at C1-C2 (top two vertebrae)
Shooting or stabbing pains
PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS:
Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Decreased self-esteem
Depression or depressed mood
Feeling helpless and/or hopeless
Frequent crying for no reason
Inability to enjoy previously enjoyed activities
Irritability; over-reaction
New phobias/irrational fears
Panic attacks
Phobias (irrational fears)
Rage attacks; anger outbursts for little or no reason
Suicidal thoughts or suicide attempts
SENSITIVITIES:
Acute or abnormal reactions to medications
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)
SKIN/NAILS:
Abnormal scarring
Acrodermatitis Chronica Atrophician
Blotchy or mottled skin
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dermographia (minor scratch pressure on skin leaves vivid red welts)
Dry, itchy skin
Easily scar
Eczema or psoriasis
Fragile nails
Frequent skin irritations
Lymphadenosis benigna cutis
Nails that curve under or downward
Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
Painful skin (abnormal/excessive pain when scratched or rubbed)
"Paper" skin (feels fragile, tissue-thin when rubbed)
Rashes on body, face
Vertical ridges or beads in nails
SLEEP SYMPTOMS:
Abnormal brain activity in stage 4 sleep
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep
UROGENITAL/REPRODUCTIVE:
Decreased libido
Discharge from breast or galactorrhea
Endometriosis
Frequent urination
Incontinence
Impotence
Infant: premature; low birth weight; low muscle tone; failure to thrive
Interstitial cystitis
Miscarriage or stillbirth
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Prostate pain
Swollen testicles
Other symptoms worsen before start of menstruation
Worsening of PMS symptoms
OTHER:
Abnormal or other changes in sweating
Activity level reduced to less than 50% of pre-onset level
Burning sensation (internal and/or external)
Changes in sweat odor/body odor
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
Fatigue, prolonged, disabling, made worse by exertion or stress
Fibrocystic breasts
"Galloping" cholesterol and triglycerides
Hair loss (not related to age, hormones, diet, medication)
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Hoarseness / Changed voice
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat
Swelling/Idiopathic edema (fluid retention syndrome)
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Thickened mucus secretions (nose, bowel, vaginal)
Thickened "sleep" around eyes in mornings
Very attractive to biting flies and mosquitoes
Sources:
Fibromyalgia & Chronic Myofascial Pain. Devin Starlanyl & Mary Ellen Copeland. 2001. New Harbinger Publications Inc.
Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. 2001. Katrina Berne. Hunter House Publishing.
The Interface of Chronic Lyme Disease, CFS and FM. Bonnie Gorman. In, The Update. Massachusetts CFIDS & FM Association. 18(3):1, 35-40. Fall 2002.
Arthritis Foundation
American College of Rheumatology
Fibromyalgia Network
Centers for Disease Control & Prevention: CFS
Jay Goldstein, MD.
Master Symptom List for Lyme - Part 1
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE:
Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)
CARDIOPULMONARY/RESPIRATORY/CIRCULATORY:
Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart attack
Heart pounds so hard it shakes body, bed
Sighing, frequent, not related to mental/emotional state
Stroke
Vasculitis
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC:
Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
"Brainfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling
COGNITIVE FUNCTION:
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (e.g. what to do with shampoo in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed and/or slurred speech
Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you write and/or speak
Word-finding difficulty
Using the wrong word
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE:
Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)
CARDIOPULMONARY/RESPIRATORY/CIRCULATORY:
Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart attack
Heart pounds so hard it shakes body, bed
Sighing, frequent, not related to mental/emotional state
Stroke
Vasculitis
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC:
Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
"Brainfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling
COGNITIVE FUNCTION:
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (e.g. what to do with shampoo in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed and/or slurred speech
Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you write and/or speak
Word-finding difficulty
Using the wrong word
I found a very detailed symptom list on another online support group. I'll paste it in the following post. It is a consolidated list of Fibro, Chronic Fatigue (ME), and Lyme symptoms.
Lyme mimics many things, and can of course be present with something else, further confusing things. It can also have coinfections that complicate things further. Of course all the false negatives on the blood tests don't help at all. Everyone has their own unique constellation of symptoms, but there are also some consistent themes to the illness. In particular, symptoms come and go, and wax and wane. Certain deficiencies show up, such as magnesium and B12 and D3. And a number of other trends. Because it mimics so many other things, it can take patience and persistence to rule things out until you get to an answer.
In addition to a Western Blot (preferably at IGeneX), there is a blood test for an immune cell called CD57. It is only suppressed in HIV and Lyme. Every Lyme patient I have heard of who had this test scored low on it. There is also a very useful culture test available now, but you'll probably have to pay for most of it. Don't know if insurance covers it yet.
See www-advanced-lab.com
This link was really helpful for me in figuring out I had it.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
There's also good info on www.ilads.org and www.columbia-lyme.org.
Consolidated Symptom List
The only two I haven't validated elsewhere as symptoms of Lyme are
-Wandering / Lazy eye
-Very attractive to biting flies and mosquitoes
Lyme mimics many things, and can of course be present with something else, further confusing things. It can also have coinfections that complicate things further. Of course all the false negatives on the blood tests don't help at all. Everyone has their own unique constellation of symptoms, but there are also some consistent themes to the illness. In particular, symptoms come and go, and wax and wane. Certain deficiencies show up, such as magnesium and B12 and D3. And a number of other trends. Because it mimics so many other things, it can take patience and persistence to rule things out until you get to an answer.
In addition to a Western Blot (preferably at IGeneX), there is a blood test for an immune cell called CD57. It is only suppressed in HIV and Lyme. Every Lyme patient I have heard of who had this test scored low on it. There is also a very useful culture test available now, but you'll probably have to pay for most of it. Don't know if insurance covers it yet.
See www-advanced-lab.com
This link was really helpful for me in figuring out I had it.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
There's also good info on www.ilads.org and www.columbia-lyme.org.
Consolidated Symptom List
The only two I haven't validated elsewhere as symptoms of Lyme are
-Wandering / Lazy eye
-Very attractive to biting flies and mosquitoes
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
