I have been doing some research regarding Lyme and signs/symptoms in small children.
I know many of you have small children that you may be concerned about. I believe my youngest child (4yrs old) may have gotten this disease from me.
For All Children
-dizziness -neck pain and stiffness in almost 90% -sore throats -swollen lymph nodes -excessive thirst, -Chest pains in at least 70%, some have palpatations -Sense of air hunger or shortness of breath, dry cough
-abdominal pain in about 50%, can mimic acute appendicitis -sometimes vomiting, heartburn -rashes that come and go, malar rashes, new psoriasis
-migratory arthralgias, joing pain in 50% to 100% -myalgias in over 80%, back ache, morning stiffness, pain at rest, muscle weakness
-frequent illnessses, dark circles under their eyes -intermittent red, hot pinnae of ears -sleep disturbance in over 80%
-Neurological symptoms are protean and can appear AT ANY TIME during the course of infection *hypersensitivity of skin, scalp and hair *Hypersensitivity to noise, light, smell *Alterations of taste *poor balance and coordination *Uncharacteristic behavior outbursts, mood disturbances, depression *social withdrawal *New onset phobias *Oppositional behaviors *Obsessive compulsive disorders *Deterioration in school performance in over 90% *Difficulty with concentration and attention in school with easily distractibility as well as "brain fog" in over 80% *New onset of ADD
*When measured with formal neuropsychiatric testing, children demonstrate defects in auditory and visual sequential processing
Less Commonly:
*Movement disorders-spaticity, ataxia, motor or vocal tics *Cranial neuropathies, e.g. Bell's Palsy or optic nerve neuritis *Peripheral neuropathies-numbness and tingling, distal parathesias, subtle weakness
Pre-Schoolers and toddlers
- Modd swings, sudden emotional outbursts - Irritabiity - Personality changes - Regression of motor and social skills (developmental milestones) - Changes in play behavior, tire easily, less active
- Trouble falling asleep, frequent awakenings - Nightmares, new phobias, recurrence of seperation anxiety - Diaper rash unresponsive to normal treatment - Frequent URI's, ear and throat infections, bronchitis, pneumonia
Congenital Lyme Disease
* Infants can be infected with Borrelia transpacentally in any stage of pregnancy and/or via mother's breast milk.
* The co-infections: Babesia, Bartonella, Mycoplasma and perhaps even the Ehrilichias can be transmitted transpacentally to the developing fetus.
* Gestational Borreliosis can be associated with repeated miscarriages, fetal death in utero, still births, hydrocephalus, cardiovascual anomalies,
intrauterine growth retardation, neonatal respiratory distress, and maternal toxemia of pregnancy.
* Infants either infected congenitally or from breast milk can have
- Floppiness with poor muscle tone - Irritability - Frequent fevers and illness early in life - Joint sensitivities and body pain - Skin sensitivity - Gastro esophageal reflux - Developmental delays -Learning disabilities and psychiatric problems
* Infants bitten very early in life will have many of the same symptoms - loss and decline in developmental milestones.
I found this to be a pretty inclusive list of signs/symptoms for small children, infants, and those suspected of congenital Lyme.
Sadly, my two children do exhibit many of these symptoms and both have positive bands for Lyme via Igenex diagnostic lab in PALO ALTO, CALIFORNIA. *******
Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella.
Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema.
BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes.
X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur.
Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
You might want something printed to hand to the reporter.
My experience with reporters is they take notes, write the article up and then get things upside down at times.
If I had handed them something printed they could double check with their notes.
Doesn't mean they still won't get things upside down.
I had a reporter email me back and forth and still got things wrong in the article.
But,that is OK. the big picture was education which was accomplished.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I know you are frustrated by your word retrieval and speech issues.... but maybe having the reporter actually SEE and HEAR the impact of the disease is more powerful than anything that could be handed to him.
I know with people i have come across, the impact of the disease dosen't really hit them until they SEE me struggle.
So while it may sound "counter intuitive" having a bad day may actually be good....
Good luck
Posts: 368 | From freehold, nj | Registered: May 2007
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adamm
Unregistered
posted
Maybe mention the fact that it's a bio-weapons issue.
Or maybe not; as Emily Dickinson wrote, "The truth must dazzle
gradually/ Or every man be blind."
Whatever you choose to say, make sure to drive home the
point that
this is one of the greatest humanitarian crises of our generation
(30 years * 200,000 per year = 6,000,000 (many of whom
we can assume will go untreated/undertreated and die from it);
thus, it's
comparable
to any episode of genocide you might care to name.)
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adamm
Unregistered
posted
Oh, and let 'em know it's an STD too!
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Usually, the writer wants human interest stories and some basic info about the disease. As important as the ILADS settlement is, I'm not sure many people would understand or be interested in it.
In my opinion, your time would be better spent in concise, helpful info on the "beginners level" like symptoms, co-infections, importance of adequate treatment (strong enough dose and long enough treatment), prevention, etc. Lyme misdiagnosed as Alzheimers, ADD, Chronic Fatigue, MS, Parkinsons, fibromyalgia, etc.
Ruth's article is excellent.!!!! Great job!!!
Brochures can be excellent sources for info. Facts are concise and usually cover the basic info needed. Consider brochures from: ILADS www.ilads.org LD Association www.LymeDiseaseAssociation.org LD Foundation www.lyme.org
The ILADS brochures have a different emphasis and contain excellent info: www.ilads.org and click Brochures
1. "What You Need To Know About ILADS & Lyme Disease" Basic Information - concise, excellent!! Items 6-8: info on testing (problems inluded).
2. "What Psychiatrist Need to Know..." I think it should be renamed "What PHYSICIANS Need to Know..." It has neurological info that EVERY Doctor should read; good lists of symptoms, etc.
It's VERY important for people to know that a Lyme test may SUPPORT a diagnosis, but should never be used to rule-out Lyme disease.
Untold numbers of people are suffering from Lyme disease even though they were told they do not have it because their test was negative.
The CDC states that Lyme is a "clinical diagnosis."
Diagnosis should be based on symptoms, possible exposure, etc. with lab tests being supportive of the diagnosis, but not used to rule-out Lyme disease.
Printed material for the reporter is a great idea, but don't overwhelm them with too much.
When is the interview? Congratulations on the opportunity to educate people about Lyme. I know you'll do a great job. Good luck with the interview!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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daise
Unregistered
posted
Hi Geneal,
Reporters are trained to write facts, so probably satisfy their hunger: give Lyme facts that will help others to recognize themselves. "Oh my gosh, this is probably what I have!"
The brief difference between IDSA Guidelines and ILADS Guidelines are basically the TREATING DOCTORS! They don't care / they do care.
ILADS doctors have clinical experience, trying to help the patient in front of them and so they are our hero doctors! They are in danger of loosing their license to practice by state medical boards, yet they treat us anyway!
But for a wee handful, IDSA docs don't have clinical experience--except to belittle us. They represent local infectious disease doctors.
When possible, maybe try to give word pictures that explain in a sentence, your anguish, your pain, or that describe a moment that gives clues to what having chronic Lyme is like.
I say, "I was dragging along my right side" and "I tried to use a cane, but couldn't because that required multitasking and I wasn't capable of that." You get the idea.
There's the old standby (in case you're too foggy right now) that a lot of us have: I was driving down the street I've driven down hundreds of times before and suddenly I got lost!
I'm sure it's OK to write notes ahead of time.
Often, people like to read about corruption, politics and profits over patients. Maybe place CT AG Blumenthal's press release against the IDSA-with Pallone, to show corruption. It's outrageous
Pat Smith wrote that Representative Christopher Smith, the sponsor of HR 741, asked Pat to tell us that he is ``outraged'' at this bill decision (of Pallone's.)
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