hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I need medical references by tomorrow. I don't have time to research this right now.
It appears the school is trying to blame my husband and I for letting our family get infected with Lyme disease...they assume we must have a tick-infested home/property.
The blame for the prevalence of this disease lies with public health organizations, the CDC, and medical professionals who tout myths as truth, despite current scientific evidence to the contrary.
I need references that support the following facts:
Entire families are frequently infected.
Not everyone infected remembers a tick bite or gets a rash.
The rash is frequently misdiagnosed as ringworm.
Pain associated with Lyme disease can be severe and limiting...like that experienced by post-operative surgical patients.
Pain medication does not relieve the pain of some patients.
Seizures are a common result of Lyme or the coinfections. Diagnostic ests (EEG, MRI, SPECT) may turn out normal in some patients with seizures.
Treatment failure is common when the patient is diagnosed after dissemination of the organism.
I want to thank you in advance...you guys are always so helpful
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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quote:Originally posted by hshbmom: It appears the school is trying to blame my husband and I for letting our family get infected with Lyme disease...they assume we must have a tick-infested home/property.
You know, that is the lowest of lows! Blame the parents for the illness of their children!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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hshbmom
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Member # 9478
posted
Hey everyone,
I sure appreciate the links.
I don't have the time to search right now.
Itsy, the article written by the veterinarian is good starting point for laymen.
L2, this is a low blow. It's like getting kicked while you're down.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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TerryK
Frequent Contributor (5K+ posts)
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posted
You probably have several days worth of research to find the most useful information and from what you've said, it may already be too late for your deadline.
I don't know much about lyme in Alabama but I could not find a page on the State website dedicated to lyme disease. Maybe there is one and I just couldn't find it but I would use any info you have on denial of lyme in Alabama. Do you have to go out of State for treatment because there are no lyme doctors in Alabama? That sort of thing.
I don't know that you will find studies to back up some of the info you need but here are some articles that *might* help.
This story with comments by an LLMD at the end could be written by many people. The article talks about seizures and lyme and how difficult it was to get diagnosis etc... http://www.personalconsult.com/articles/lymeneurologicalsiezures.html Seizures Caused By Neurological Lyme: The Diagnosis was Finally Made By an ILADS Physician
Some parts that might be useful: 1/3 of families of affected children have had 3 or more members that have been diagnosed with lyme at one time or another. 40% of mothers of lyme children are infected.
Lyme disease pain has been described in studies as equivalent to congestive heart failure.
I applaud The Courant for publishing the July 31 Other Opinion article "Medical Revisionists Threaten Effective Lyme Treatment" by Raphael B. Stricker, M.D., president of the International Lyme and Associated Diseases Society.
In my psychotherapy practice, I see children and adolescents who have serious neuropsychiatric manifestations of chronic Lyme disease. These profoundly affect their lives, in and out of school. Most have been misdiagnosed in the past by at least one doctor who restricts his or her view of Lyme to that of the Infectious Diseases Society of America and who denies chronic Lyme. It often takes years for the parents to find an answer to their child's devastating headaches, stomachaches, sleep problems, profound fatigue and problems with mood and cognition; to learn that their child does indeed have Lyme; and for treatment to begin. At this stage, treatment is usually longer and more costly, and those years the child lost will never be regained.
I see these children when they are very ill, and then I see these children's health restored after months or years of treatment by doctors who understand chronic Lyme and use the ILADS treatment guidelines. I see these children return to school, sometimes after months or years of absence, and go on to college.
How much of this do the Lyme deniers of the IDSA see? If they saw it, would they be willing to take another look at the damage their narrow-minded thinking continues to do?
July 31st, 2006 A small group of scientists is turning the world of Lyme disease on its head. They deny the existence of chronic Lyme disease.
They insist there is no "credible scientific evidence" for persistent infection after a short course of antibiotic treatment because the corkscrew-shaped bacteria that causes Lyme disease, Borrelia burgdorferi, cannot survive this treatment.
Fearing "over-diagnosis," they publish guidelines endorsing an insensitive testing program that misses half the patients with the tick-borne illness.
Fearing "over-treatment," they recommend antibiotic therapy barely adequate for acute infection and wholly inadequate for chronic Lyme disease.
Soon they will publish the latest version of an already restrictive set of guidelines that will further pressure the Centers for Disease Control and Prevention and academic institutions to ignore chronic Lyme disease. The guidelines will encourage insurance companies to embrace up-front cost savings inherent in shorter treatment and deny payment for longer treatment, even if the Lyme patient is still sick but showing signs of improvement.
Although the Lyme denialists claim support from mainstream medical groups, the reality is that the handful of them have managed to dictate policy to larger health care organizations through a closed process that rejects dissenting views. Unaware of this one-sided process, the rest of the medical industry blindly follows their lead while patients suffer.
Lyme disease is the most common tick-borne illness in the world. Named after the town where it was discovered in 1975, the disease is transmitted by the bite of an infected tick. Research has demonstrated that the Lyme bacteria is one of the most invasive and elusive pathogens known to man. After causing a telltale "bulls-eye" rash, the bacteria screws its way into multiple organs and tissues to produce often-debilitating muscle, joint, nerve, brain and heart ailments.
Although New England remains the epicenter of the disease, with up to 20 percent of new cases reported in Connecticut alone, Lyme disease and associated infections are popping up in new locations around the globe. Where you live doesn't accurately reflect your risk of catching Lyme disease because people travel on planes, trains and automobiles, while ticks travel on deer, birds and household pets. As a result, the risk of acquiring the disease is increasing unpredictably.
We know treatment is effective when instituted early, but fewer than half the people with Lyme disease even remember getting a tick bite or seeing a rash/ The resulting infection may spread and become chronic before the victim has a chance to seek treatment.
Research over the past two decades suggests the key to eliminating chronic Lyme disease is prolonged antibiotic therapy. Lyme-treating physicians recognize this fact and studies support it.
The Lyme denialists refuse to accept this point of view.
Imagine if "AIDS denialists" had won out in the early 1990s. Doctors would have refused to prescribe antiviral medications and insurance companies would have refused to pay for them. How many millions of patients would have gone undiagnosed and untreated?
Sound scary? Welcome to the world of Lyme disease run by Lyme denialists.
Today many Lyme patients are going undiagnosed and untreated because of the Lyme denialist agenda. Although Lyme disease is usually not fatal, the disability associated with a chronic case is equivalent to congestive heart failure.
Health care providers, government agencies and Lyme patients must confront the Lyme denialists and fight for better recognition and treatment of Lyme disease.
Raphael B. Stricker, MD, of California is president of the International Lyme & Associated Diseases Society.
Article published on the HARTFORD COURANT. July 31st, 2006.
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Mourin S, Bonnier C, Bigaignon G, Lyon G. Service de Neurologie P�diatrique, Cliniques Universitaires Saint-Luc, Bruxelles.
After two seizures, a 13 year-old boy experienced headache, fatigue and loss of appetite over a period of 3 weeks. There was a bilateral papilledema with normal visual acuity. CT and MRI disclosed two ischemic foci, that were interpreted as evidence of vasculitis. High serum levels of IgG and IgM antibodies specific to Borrelia burgdorferi, were present. The patient had attended an outdoor scout camp in a area, in south-east Belgium, known to be endemic for tick-born borreliosis. The clinical symptoms, the levels of the specific antibodies and the radiologic abnormalities responded dramatically to treatment. We believe that seizures in this case were related to cerebral vasculitis. This case confirms the extreme diversity of the neurological manifestations of Borreliosis.
PMID: 8009148 [PubMed - indexed for MEDLINE]
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
This one might be better but both are dated:
: Neurologia. 1992 Feb;7(2):50-4.Links [Positive anti-Borrelia antibodies in patients with clinical manifestations compatible with neuroborreliosis][Article in Spanish]
Izquierdo G, Aguilar J, Barranquero A, Navarro G, Borobio MV, Angulo S, Dom�nguez I, Quesada MA. Servicio de Neurolog�a, Hospital Universitario Virgen de la Macarena, Sevilla.
The clinical features of 19 patients with neurological manifestations unexplained by another disease and positive serology for Borrelia burgdorferi were studied. ECM was present in only 11% of the cases and 32% referred tick bite. The characteristic features for suspicion of NB according to our series was the presence of polyneuritis in 84% of the cases specially in the form of multiple mononeuritis and involvement of the facial nerve (79%) leading to even greater suspicion with the association of V pair involvement. Seizures, sleep disorders, and higher mental dysfunction may be found in association with other more characteristic neurological features. The typical triad of NB (aseptic meningitis, facial paralysis and polyradiculoneuritis) was found in 21% of the patients and in the absence of another disease to justify the same neuroborreliosis (NB) seemed evident. In all the cases components of this triad were found. Headache, arthralgia, fever and, less frequently, arthritis are other symptoms often past with the presence of anti-BB antibodies. Patients with the shortest evolution most frequently presented antecedents of facial paralysis, sensory alterations and Romberg's sign than patients of longer evolution. CSF demonstrated the presence of pleocytosis in 24% of the cases and in only one patient a slight increase in the intrathecal activity of IgG was observed which may be of use in differential diagnosis with MS. MR showed alterations in 61% of the patients and, while not specific, the lesions present subcortical predominance.
PMID: 1610600 [PubMed - indexed for MEDLINE]
Posts: 6286 | From Oregon | Registered: Jan 2006
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shazdancer
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Here's a case where bad information on Lyme may just be your friend.
Here is what the Alabama Agricultural Experiment Station had to say about Lyme in your state:
quote:Though Lyme disease can be a serious malady, and we know the disease-causing organism is present in Alabama, we don't want people to be overly concerned if they find a tick on their body, because the vast majority of these ticks don't carry diseases," Mullen states. He explained that people who spend any time in the outdoors should check themselves for ticks. If they find ticks attached to their body, remove them immediately, put them in a plastic bag and freeze them. If no symptoms occur within a few weeks, assume the tick carried no disease, the Auburn researcher says.
In about 60-70 percent of Lyme disease cases, the first symptom is a small lesion, which may or may not be in the same place as the tick bite. The lesion will grow into a bullseye or halo pattern and may be warm to the touch, but not painful or itchy. It will gradually go away after one to two weeks.
In other words, the state of Alabama didn't think Lyme is a big deal. So how could the school system call you negligent if you have done more, not less, than what the state says you should do?
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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hshbmom
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posted
These are great references Terry & Shaz...just what I was looking for.
THANK YOU !!!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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lymednva
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It's about time!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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TerryK
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posted
I'm so happy to hear that. I hope they get a clue and stop putting parents who are actually doing the right thing through the ringer. So sorry you've had to deal with this.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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