philamom

Do you mean Friday? I thought it was off-air yesterday and today?

Phasmid- Ringing in the ear is very common in adults with lyme. Dawn- I also had HELLP syndrome during pregnancy. Also had severe pain with my cycles for the last 4 yrs. I thought for sure I had ovarian cancer -- ran tons of tests including ultrasounds & cat scan. Doctors could never figure it out. I eventually lost my cycle--no more pain! But the doctors said the pain I was describing was not likely due to pre-menopause/menopause. I dunno.

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free. But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow. I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well. We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past) momaine- Can I ask how long after IVIG you did the Igenex test?

I'm very dissapointed I won't be able to watch it this afternoon. I guess I'll have to wait for the DVD?

Dr. Bransfield mentioned PANDAS!!! He said they are tough cases!(something like that).

I know...it's a long article. It mentions the sudden, dramatic onset of symptoms in the boy's case. I like her other articles as well. Some great ones for school teachers,nurses,exc.

KIDS AND LYME DISEASE HOW IT AFFECTS THEIR LEARNING Sandy Berenbaum, LCSW, BCD Family Connections Center for Counseling Lyme Times Fall/Winter 2002/3 Offices in Fishkill and Brewster, NY (845) 259-9838 To subscribe, contact: Lyme Disease Resource Center PO Box 707 Ukiah, CA 95482 1 yr (4 issues) domestic $35 © 2002 2 Introduction: There is an urgent need for Lyme disease education and awareness in the schools throughout the United States. In addition to the "ABC's of Lyme," and the new "Time for Lyme" video, Lyme professionals - physicians, psychotherapists, neuropsychologists, need to be seeking opportunities to provide in-service training to schools, so that teachers and other school professionals understand and appreciate the difficulties that face kids with Lyme every day. We need to call on the schools to help these children, and education is the key. The following is a presentation I gave to the Northern Dutchess County (NY) Support Group in November 2002. Perhaps it will provide ideas for other presentations to Lyme groups and schools around the country. Every child with Lyme disease should feel understood and supported, and be successful in school. Lyme disease may be a handicap that some children have, but it should not be an insurmountable obstacle. When my colleague, Lynne Canon, and I started our private practice 16 years ago, we did so with a commitment to providing psychotherapy and family therapy to adolescents and their parents. For five years, we did just that, with no thought that a medical illness might be at the root of the psychiatric, behavioral or learning problems some of these kids might have. Then, in 1991, a client was referred to us who had a profound effect on us, and on our practice. I will call him "Jim". Jim was a 15 year old boy who refused to go to school. He was paranoid, fearing that people were out to get him as well as his family, and he could not sleep at all. His parents reported that he had been an honors student up to a few months prior to our first session, but now, when he did go to school, he failed every test he took. He appeared to be physically fit and well disciplined. He was even skilled in the martial arts. On Intake, we asked standard history and family history questions. We found Jim to be a very verbal and engaging young man, obviously bright, and a deep thinker. We saw agitation, restlessness, and anxiety, as well as the paranoia reported by his parents. Toward the end of our initial interview, we asked about his hobbies. With great enthusiasm, Jim told us about his volunteer work at an environmental center here in Dutchess County, and of his hopes for a career involving environmental studies. Jim was a real puzzle to us. We were faced with a set of symptoms and functional problems that made no sense, even in examining his history. Realizing that there had been a dramatic onset of symptoms at a particular point in time , and that Jim had spent so much time out of doors in what we now see as the Lyme capital of the universe, we referred him to his family doctor for a Lyme assessment. His pediatrician took a titer, which came back "negative", (any of you parents have that experience?) indicating to this doctor that Lyme was not a factor! That road appearing closed, we continued to see Jim, as well as his parents, and watched a steady decline in Jim's functioning. He could not go to school, and was placed on home teaching. His parents and we were completely baffled. 3 As Jim's symptoms got worse, we thought he might have to go into a psychiatric hospital. In a last quest for a possible medical answer, we suggested that his parents take him for a consultation to a pediatrician who we knew to be Lyme-knowledgable. On the day that consulting doctor saw Jim, he called to tell us that he had made a CLINICAL DIAGNOSIS of Lyme disease, a diagnosis based on Jim's clinical symptoms, NOT on a blood test. The doctor prescribed Ceftin, a drug that crosses the blood brain barrier, attacking spirochetes that were in the brain. Within three days , Jim's paranoia disappeared. He admitted to having had hallucinations, and they too were gone. He was now sleeping 14 or more hours a day, and for the first time, had joint pain, as part of a Jarisch Herxheimer reaction to the antibiotics, a reaction in which the symptoms temporarily get worse. Thus began Jim's long struggle with what turned out to be chronic Lyme disease. Jim went from being a teenager who could not attend school, could not participate at all in the educational process, was failing all tests, to a good student at one of the best colleges in the New York State system. He went from being a very sick kid, who was on homebound instruction for a year and a half, to a college graduate. He was helped by a supportive family, a Lyme-literate doctor, who treated him effectively, a school administrator who accepted the fact that he was, indeed, ill, and a school system that provided accommodations, to help him succeed. --------------------------------------- Most of you know that Lyme disease is a multi-system illness. Someone with Lyme can have joint pains, heart problems, stomach problems, any kind of physical manifestation. I'd like to focus this evening on the neurological and neuropsychiatric problems, the ones that have the greatest effect on learning, and the ones that lead to the greatest misunderstandings between parents and school professionals. Most common with children and adolescents who have chronic Lyme are intense headaches that can last for days, cognitive, attentional and mood problems, profound fatigue, and difficulty sleeping. Many kids have problems with vision, or visual and auditory overstimulation. Some have a sensitivity to flourescent lighting. Some of these symptoms may be very subtle, so it is difficult for the teachers to realize that they are dealing with a sick child, rather than a child who is daydreaming, or simply trying to avoid his school work. Once a child has been diagnosed, and is undergoing treatment, there are problems produced by the treatment itself. High doses of antibiotics and other medications the child may be taking can produce gastointestinal problems. The child may be uncomfortable, and complaining a lot, particularly of stomach aches. Since young children sometimes complain of stomach aches to avoid academic projects (I remember my stomach hurting in 3rd grade every time I had to speak 4 in front of the class), it's hard for teachers to discern whether the problem is avoidant behavior, or the result of illness. Another problem, of course, is the flare of the symptoms when the Lyme spirochetes are being killed off by the antibiotics. A teacher who doesn't know much about Lyme disease has a difficult time realizing that with this illness, once the medication is started, the child will periodically feel wrose, and have more, rather than fewer, symptoms. My sister-in-law used to say to me, during my Lyme treatment, when I told her how bad I felt - "Oh, that's right - worse is better", but that's a hard concept for people who are not personally affected by Lyme to grasp. Other problems include the frequent need for medications (sometimes at school), the fatigue caused by the illness itself, or as a result of the lack of sleep, the demand on the child's time for long car trips to doctors who are Lyme specialists (some kids are even travelling to New Haven, CT, a 4 hour round trip). Another big problem can be that these very sick kids don't look sick . The extent of the child's illness is not reflected in what the teacher sees. ---------------------------------------- Another, and very important, way to look at kids with chronic Lyme is to look past their symptoms at their functional impairments. It's the functional impairments that give us the language necessary to figure out what these kids need in school . If you have a medical problem, you ask yourself and your doctor two questions: 1. What do I need to do to get better, to get well? (This question addresses how to get your health back completely, or as completely as possible) 2. What do I need to do in the meantime, to compensate for my current functional impairments? (This addresses what in school jargon amounts to "accommodations", enabling you to function on the best level you can, hopefully the need will only be short term.) You break your leg. Before you broke your leg, you were able to walk, to drive, to go up and down stairs. You go to the doctor. He develops a treatment plan - puts a cast on your broken leg, tells you what not to do while it's healing. You get rides to work, maybe use a wheelchair at home, someone else in the house does the laundry, if the washer and dryer are on a different level. You have a long term plan and a short term plan. The long term plan is to get permanently better. The short term plan is for "accommodations. " If a child breaks her leg, the same process is put into place -- the doctor establishes the long term plan, by "treating" the broken leg. A note from the doctor, gives the child "accommodations" in 5 school as part of the short term plan, giving her an elevator pass, having someone carry her books, compensating for her "functional impairments." What's different about Lyme? First, if Lyme is chronic, you probably don't know when you got sick. Your symptoms crept up on you, until you finally found a doctor who put the puzzle pieces together, diagnosed you, and began treatment. (You know when you broke your leg!) When you got the Lyme diagnosis, a light bulb probably went off in your head. You remember when you were well. You had years of life experience of health, physical and mental. You know what your brain was like before your first symptom. You want to get back to that point, and that is your goal, restoring health and restoring functioning. For a child, here is the profound complication - she had little or no life experience before Lyme. One of my clients is in 5th grade. Her doctor speculates that she's had Lyme since the age of 4. What do she and her parents know about her cognitive abilities, her attentional abilities, before Lyme touched her life? This is the problem for so many kids. They have no baseline . Having no memory of a tick bite or a rash, they really don't know when normalcy ended, and Lyme began. Or, even if they do remember, they were so young when they got bitten that there was no evidence of their ability to do schoolwork and to concentrate before the illness began. It's not clear to them how competent they would have been had they not gotten Lyme disease. It's a very puzzling picture for these children, and hard for them to be self-confident, in the face of this illness. --------------------------------------- Now, let's look at some of the FUNCTIONAL IMPAIRMENTS in children and adolescents who have chronic Lyme disease? One can see functional impairments at home, in school, and among the peer group. The child's physical problems, unpredictability of symptoms, and feelings of helplessness can lead, IN SOME KIDS , to a self-focused view of life, understandable given what these kids are trying to cope with. I'd like to show you a slide that I used in a presentation at a Lyme Disease Association medical conference. It highlights what some of the functional impairments are, and points to how the school can help. In this chart (See Slide #1) I give an example of some of the common impairments we see: • Fatigue • Problems Sleeping • Lethargy • Attentional problems, such as distractibility, impulsivity, problems focusing 6 • Depression or anxiety, including obsessional thinking or racing thoughts, "brain never stopping" (thinking constantly) • Problems with eating (due to gastrointestinal symptoms, either from the Lyme itself, or secondary to the antibiotics.) • Behavioral problems, severe at times • In adolescent girls, by the way, PMS symtoms can be QUITE severe, as well. Let's look at some of what the functional impairments might LEAD TO. We can see the process here. The functional impairments that are the original problems produced by Lyme (and when I say Lyme, I include, of course, the co-infections) result in further problems for the child. (see the second column) • Poor school attendance • Chronic lateness • Incomplete assignments and tests • Behavioral problems at school • Withdrawal from peers (particularly when peers fail to understand how sick the Lyme patient is) • Situation-induced mood problems (aside from the mood problems coming from the infection itself) • Weight gain or loss, at times, dramatic • Mood swings, inappropriate verbal outbursts, increasing conflicts in all settings (In general, kids and adolescents do not have a high degree of frustration tolerance. We all know that. Lyme disease severely challenges the child's already-limited resources) What, then, might the child do to COMPENSATE for what is going on? (these are what I call the "self-selected solutions") All that I have discussed so far is distressful for the child. She may try to cope with all of this by doing any of the following: • As school performance falls, and they're less involved with activities, Lyme patients might shift to a lower-functioning peer group, cut classes, and, in the extreme, they might drop out of school (if over 16), to avoid the frustration of dealing with academic demands • For the kids with GI problems, they might severely limit their food intake, or begin gorging and purging 7 • Self-Medicate • For energy, or to self-treat the attentional problems, they might use stimulants or coccaine • To calm them down, or to keep them from thinking about all that is going on, alcohol, marijuana or other drugs might be chosen I have seen all of the above in adolescents with chronic Lyme in my practice. Any of the functional impairments can lead to any of the results, and to any or all of the self- selected solutions. Functional impairments in school are often very significant, and call on the educators to develop creative plans to help the student with Lyme succeed. Without the support of the school, the best efforts of the parents might not be enough to keep a kid on track, in school, and successful!! -------------------------------------------- What THERAPEUTIC SOLUTIONS might we offer, to help deal with the FUNCTIONAL IMPAIRMENTS? Please note that these solutions do NOT directly connect with any particular item in the previous column. There are different categories of therapeutic solutions, but for now, I'd like to focus on what the school can do. They can make the difference between success and failure for a child with chronic Lyme. We see several listed on this slide. I'll mention others later. They DO WORK , and most of them are not very costly for the district or the state: For example, • The length of the school day • Time school day begins and ends • Length of homework assignments • Length and location of tests • Physical education requirements (as well as other accommodations) I'll just mention briefly another important area where there can be therapeutic solutions, the home front: 8 Always keep in mind that when your child has chronic Lyme, he needs to be both SUPPORTED and ENCOURAGED. It's important that you base your expectations of him on how he is able to function, on a day to day basis, but you don't want him to feel like, or function like, an invalid. Have expectations of him, but keep them in line with where he is in his medical treatment, as well as whether he's having a good day or a bad day. Some families need help dealing with children with Lyme, particularly if it effects their brain, and their school functioning. That is where psychotherapy and family therapy can be helpful. Therapy can serve an important role for kids and families with chronic Lyme, but it's important to find a therapist who is at least Lyme-open, if not Lyme-literate. The kid and the parents should be involved, in a combination of individual and family therapy. The therapy should be concrete, focusing on the problems. ------------------------------------- Now lets look more specifically at school. As I mentioned earlier, cognitive problems are common with kids with Lyme disease, as are attentional problems. Kids with chronic Lyme might find it hard to retain new information. Lyme also can effect receptive and expressive language, visual-spatial processing, abstract reasoning, processing speed. Just as Lyme disease can effect any part of the body, it can effect any cognitive process. These kids may appear to be distracted easily, have poor concentration, appear scattered, have just about any symptom of attention deficit disorder. Or if the child had ADD before she got Lyme, her ADD symptoms are often exaggerated by the illness. These symptoms might be intermittent and transitory, given the nature of Lyme disease, making it even more difficult to develop an education plan. When I speak to teachers' groups, I tell them that when they have a child with chronic neurological Lyme in their class, the child may appear learning disabled one day, seem normal the next. She may act like she's got ADD on another day, and may appear withdrawn and fatigued the next. It's a real challenge for the classroom teacher! So what can be done to educate these children? First lets look at the issue of free and equal public education, a wonderful and radical gift our democracy has given us. Free and equal public education gives all children a right to an education in this country, this state, this county. The law protects the disabled through entitlements , to level the playing field, so that they can benefit from an education, just as those who are not disabled can. There are state and federal bodies of law that provide for those entitlements, and they are available to all those who are disabled. They are not granted at the discretion of anyone - the teacher, administrator, school superintendent!! 9 Some of these benefits are costly. There is always a push on the part of those responsible for balancing budgets to protect our tax dollars. There is always controversy regarding which programs should be prioritized. The result is that not all entitlements are easily gotten by those entitled to services. But parents of kids who are seriously ill with Lyme disease need to know that these entitlements exist, and that it is YOUR CHILD ' S RIGHT TO HAVE ACCOMMODATIONS , AS LONG AS THERE IS EVIDENCE THAT THEY ARE NECESSARY . I'd like to discuss three stages of supports the schools can provide. Most children will only need the first stage, and when a school is cooperative, coming from an understanding that these children are indeed ill, and that the school can be a partner in their recovery, the first stage might be all that is needed. The first stage is "Informal Educational Supports." These are supports that can be given to children without any formal plans, without classification, without formal meetings. A school administrator, for example, knowledgeable about the child's illness, and the resulting impairments, might carefully select a classroom teacher or teachers that can develop flexible schedules for a child, permanently excusing a percentage of the required homework, giving extra time for testing, seating a distractible child near the source of instruction. These teachers give support and encouragement, without blaming the child for erratic performance. Depending on their teaching styles, some teachers have an easier time providing this flexibility than others, and if the administrator realizes this, and appropriately matches the child's unique needs to the particular teacher, problems can be avoided from the beginning. Late assignments can be accepted, without penalty, misspelling on tests that are not spelling tests can be excused. There is no battle ground here between the school and the parents. All are partners in providing this child with the education she deserves, and there is little if any cost to the school district, or to the state. There are two reasons why informal accommodations don't always work. The first is that the school refuses to believe that this child, who looks healthy, or is laughing with his friends in the hall, is in fact sick. Parents should certainly be prepared with documentation, to back their assertion that their child has an illness that effects her learning - clear detailed letter from the treating doctor, neuropsychological evaluation, even brain SPECT scan, if there is one. The child has a right to an education, but the school has a right to the evidence that a medical problem that effects learning DOES exist. The second reason that informal supports might not work is that the child needs more than can be provided without a formal plan. If this is the case, a 504 committee needs to be convened, and a 504 plan is put into place. Section 504 is Federal civil rights legislation. Under it, a child with a disability has a right to accommodation to compensate for the disability. And, as I said earlier, it is an entitlement. 10 By law, a letter from the treating physician should be all that is needed in order to convene a 504 meeting, and develop a 504 plan. This is the easier of the two types of accommodations to put into place, and usually leads to a quicker meeting, therefore accommodations begin more quickly. If the 504 does not seem to be working, if it does not provide for adequate accommodations, then a parent can request the Committee on Special Education to meet. A child with a health problem qualifies to be classified Other Health Impaired , an IEP (the plan for the child), is put into place, and supports are written into the plan. Supports available with an IEP that are not usually available under 504 include Resource Room, regular counseling for the child with a the school social worker, and school psychological evaluation every three years, as long as the child remains classified. ---------------------------------- Here are some of the accommodations that might be put into place, and how I've seen children helped by these accommodations. Some may require that a neuropsychological evaluation document the particular learning problem that leads to the need for the accommodation. • Unlimited time for testing - a child is afforded extended time to take tests. Some children with Lyme have problems with the speed of processing information. These children get exceedingly anxious, trying to take a timed test. This accommodation removes the anxiety, literally gives them enough time to think. • Separate testing location - this is appropriate for children who have problems with focusing and concentration, and are easily distracted. There are fewer children taking the test, in a quiet location. • Tests read to student - this is for students who have particular verbal learning problems, in which their auditory learning is less impaired than their visual learning. • Excused from a percentage of their homework. Children with profound fatigue, who have a difficult time just getting through the school day, benefit greatly from having less work to do at home. Keep in mind that more school work is not necessarily better . If a child is fatigued and has problems with memory and organization, of what use is hours worth of homework, at the end of the school day, or on the weekend? Of what benefit is increasing the child's anxiety by requiring that he/she perform equal to the children who are well? Are they really being treated equally, if the child who is well can do the work in 1/4 to 1/2 the time as the child who is ill? Shouldn't the sick child have at least an equal right to down time, time to relax, and recover, to face the next learning challenge? There are long lists of accommodations, designed to fit the needs of disabled children. Those with chronic Lyme, where documentation supports the problems and the need, are entitled to 11 these accommodations. Those who say it gives these kids an edge, rather than levelling the playing field, have never known someone with chronic Lyme. I suggest to those people that if these accommodations provide an edge for these kids, then so do hearing aids and eyeglasses. Ask everyone with those disabilities to do their work without those particular accommodations, as well!!! One more thing - you parents have a very important job in this process with the school - advocating for your child. Meetings with the school professionals can be very intimidating. They've got formats to follow, protocols, guidelines required by law to follow, for the very design of the meeting. They are used to these meetings. You are NOT - often leading to a very uncomfortable situation for parents. Go into the meeting prepared. Take your documentation, know what your child's needs are, and DON'T GIVE UP!! If you don't get support from the school the first time around, find a support group for parents of classified kids, attend meetings, network with parents who have been dealing with their children's schools for years. They have an expertise in education law, and they are very willing to help you. Someone from the group may even be willing to attend the meeting with you. You are entitled to bring anyone you wish. Take advantage of it. It's not always an easy path, but you already know that about Lyme disease. It's unfortunate that yet another part of the environment can be so difficult to negotiate for families with Lyme, but for right now, until there is a greater understanding of Lyme in the education community, that's the way it is. So just remain in your child's corner, and don't give up!!

My daughter's llmd did not treat her elevated Myco IgG. I was also told it's very important to test for Myco F in a lyme individual.

Nancy- I hope you are keeping your appt with Dr H or Dr C. They usually are able to determine if it's a new infection or chronic persistent infection. Unfortunately, sometimes a positive IgM on the Western Blot means chronic, persistent lyme. A good llmd will do additional tests to help determine.

SF MOM- WOW...Very impressed with Dr. H! You are so fortunate to have him guiding you!!

lyme mom- I'm so pleased to hear your family is off abx and doing well! I wish you continued success and good health!

Yes, what was I thinking. www.lymefamilies.com click on articles

shoot -- let me try again. You can't open the articles. I just noticed - pdf file. But I recommend looking up the above articles.

Sandy Berenbaum, LCSW, BCD, Lyme-Literate Psychotherapist Family Connections Center For Counseling .Offices in Brewster, NY and Southbury, CT • Phone: (203) 240-7787 .My Articles Boundaries 101 for Lyme Patients (pdf file) When chronic Lyme disease patients are diagnosed, they enter a different world. The lack of understanding of the complexities of this illness outside of the Lyme community makes it important for patients and families with Lyme disease to establish boundaries, to set limits with those around them who do not understand what they are going through, to protect their time and energy, and to get the support they need. Here I discuss the boundary issues, and offer strategy for dealing with these issues when they come up. Kids and Lyme Disease: How It Affects Their Learning (pdf file) Lyme disease can have a profound affect on a child’s ability to learn. This article discusses the complexity of the problems that children with chronic Lyme face in the school environment and what can be done to support them. Tick-Borne Disease in Children and Adolescents: A Medical Illness/A Multidisciplinary “Cure” (pdf file) Lyme is a complex illness that, when chronic, often effects the brain, causing impairments in mood, cognition and attention. An integrated, or team approach to treating Lyme patients can provide help, support, and solutions to problems generated by the illness, beyond the medical treatment itself. Reflections on Lyme Disease in the Family (pdf file) Lyme disease in a child or adolescent can have a profound effect on a family. This article touches on some of the issues that face parents and offers parenting strategies to help ease the journey. Lyme Disease Screening Protocol (pdf file) This is a simple screening tool I developed with my former co-therapist Lynne Canon, now retired. It was designed to help mental health practitioners determine whether Lyme disease could be an underlying cause of presenting problems among children or adolescents. Our hope is that by using this tool more cases of Lyme disease may be recognized by mental health practitioners, resulting in earlier medical diagnosis and the need for less complex and lengthy treatment. If a tick-borne illness is present, comprehensive medical treatment can lead to more successful resolution of mental health problems, as well. Identifying Lyme Disease in the Schools (pdf file) Education regarding Lyme disease is an important service we can provide to our schools. This handout can help teachers, nurses and guidance counselors identify children who may have Lyme, leading to early diagnosis and treatment. Since Lyme disease can have a profound impact on a child’s ability to learn, school professionals have a different view of the child than the parents or pediatrician might. .Pages Home My Background Sandy's News My Articles Resources Children's Stories Rachel's Story Peter's Story Meghan's Story Mary's Story .Sandy Berenbaum, LCSW, BCD • P.O. Box 28 • Southbury, CT • 06488 Phone: (203) 240-7787 Powered by WordPress and Tarski ..

i saw you here...and i'm like a lamb hey and when i was typing this, it came to me secondly that your name is..."mary"..i'm not quick...it's the wine i just read jt. comment..and ds pulled too....just started nac here...but for allergy purposes...and i will continue....i think....into next summer...but only doing about 350mg....(i think my ds trich is allergy related) and ds also will rub and fiddle with hair and not pull if i keep on him...(i think more compulsion w/sensation also)...and send right to shower with solinium shampoo will ivig help this..i would like to know too y

I agree with smartyjones. After I sent the letter out, I noticed parents were telling their children to inform my daughter when they were out with strep. One child stated she was afraid to come back to school because she didn't want to mess her up. My daughter was so upset with me. Here is our letter: There is a child in __ grade with a health issue that requires the need to know when there is possible exposure to strep infection. If your child is diagnosed with strep, could you please contact me so that I can let this child's parent know of the possible exposure. Thank you for your assistance with this matter. Sincerely, nurse signature (or, you could have the letter sent by the teacher (...a child in this class)--so the teacher is notified instead of the nurse. I did this last year, and found more people willing to send an email to the teacher as opposed to contacting the school nurse. But then you may have parents asking around.

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Momaine- That's Fantastic News!!! Good luck with reducing the celexa.

Scroll below for 2 articles (one published yesterday, the other the one referenced in it from 2008) you should read. The biggest news is the gene mapping of 13 strains of Lyme by Dr. Benjamin Luft (referred to in prior email). What does this mean? In 2008, Dr. Lufts team identified a new strain, which they thought was largely responsible for the more severe illness cropping up across the U.S. in recent years. Now, they have gene mapped 13 major strains (there are over 100 identified) and it is clear that strains have different presentations, some primarily associated with a "rash" and some flu like symptoms, and others, like the one identified in 2008, Osp-C Type A, causing a much more serious, neurological disease that affects major organ systems. This could be the explanation for why some patients are infected with "Lyme" and have little to no symptoms and recover with a short-course of antibiotics, while others have a much more significant illness, and do not recover well from a short-course of antibiotics. With this information, scientists can now start identifying the specific symptomology differences/disease impact across these strains, and start developing diagnostics that actually test for these specific strains, and then of course develop treatments targeted at these specific strains that individuals are infected by. It has already been found that individuals are not only co-infected with other diseases carried by ticks (like Babesiosis), but also with multiple strains of Lyme as well -- explaining the severity and complexity of these illnesses. This is HUGE scientific progress and will help us make progress on diagnosis much more quickly, not to mention, support our legislative efforts in PA (that update coming shortly) to help patients get access to care to restore their health. October 12, 2010 Melville, N.Y. - A Stony Brook scientist has helped map the genetic family tree of the bacterial strains that cause Lyme disease, a finding that raises hopes for faster diagnosis and new vaccines, scientists said Tuesday. The availability of such precise genetic information is expected to help develop diagnostic tests sensitive to the exact strain that has caused a patient's infection, said Luft, a professor of medicine at Stony Brook University's medical school. He presented his research Monday in Washington, D.C., at the Institute of Medicine, an arm of the National Academy of Sciences. Of the varying strains, Luft said some cause only a skin rash, while others, which he characterized as more serious, "go into the blood stream and spread throughout." Full story: http://tinyurl.com/3xq9o74 Letters: lettertoed@thestar.ca __._,_.___ Scientist helps map bacteria family tree traced to Lyme disease By Delthia Ricks and Sophia Chang Newsday October 12, 2010 MELVILLE, N.Y. — A Stony Brook scientist has helped map the genetic family tree of the bacterial strains that cause Lyme disease, a finding that raises hopes for faster diagnosis and new vaccines, scientists said Tuesday. Dr. Benjamin Luft and colleagues have been on the trail of Lyme disease for years, aiming to discover why some people are affected by symptoms that last a few weeks, while others develop invasive infections that attack major organ systems. The mapping of more than a dozen bacterial strains moves science a step closer to finding out. The availability of such precise genetic information is expected to help develop diagnostic tests sensitive to the exact strain that has caused a patient's infection, said Luft, a professor of medicine at Stony Brook University's medical school. He presented his research Monday in Washington, D.C., at the Institute of Medicine, an arm of the National Academy of Sciences. Of the varying strains, Luft said some cause only a skin rash, while others, which he characterized as more serious, "go into the blood stream and spread throughout." Lyme disease — the most frequently transmitted tick-borne infection in North America — is endemic on Long Island, particularly in Suffolk County, where several hundred cases are reported annually. According to the U.S. Centers for Disease Control and Prevention, cases of severe forms of Lyme disease have been rising for two decades. Luft said he believes the new genetic information eventually could play a role in the development of vaccines. One vaccine — the first against Lyme disease, and developed before the findings were announced this week — is slated for human trials in January. Working with a team of researchers from across the country, Luft and colleagues parsed the entire genetic codes of 13 types of the Borrelia burgdorferi bacteria that cause Lyme disease. A renowned Lyme disease investigator, who was not connected with the study, said the work "is of enormous value" — an important advance with practical applications. The researcher, Dr. Brian Fallon, director of Columbia University's Lyme and Tick-borne Disease Research Center in Manhattan, said Tuesday that the current method of screening for Lyme is notorious for "being far too insensitive for early Lyme disease and for neurologic Lyme disease." "Mapping of these 13 strains will help us to learn more about the invasiveness and virulence of these particular strains, as well as whether they have unique clinical profiles," Fallon said. Luft said the finding "is already stirring a lot of discussion and a lot of ideas." Two years ago, he discovered that a single strain of B. burgdorferi was causing severe cases of the disease in the United States and Europe. In the new research, published online in The Journal of Bacteriology, scientists scanned the genomes of more than 100 strains of the bacterium to identify the 13 subtypes that play the most prominent roles in Lyme disease infections seen frequently in North America. For years, scientists have known about the existence of multiple Lyme bacterial strains but were unable to delineate which symptoms each caused, said Dr. Steven Schutzer, a Lyme disease expert at the University of Medicine and Dentistry of New Jersey, who was Luft's collaborator and lead author of the study. June 9, 2008 -------------------------------------------------------------------------------- CBSNews.com: A virulent strain of Lyme disease germ is spreading in the U.S. and in Europe, a new study shows. It's not a new strain of Borrelia burgdorferi, the spirochete or spiral-shaped bacterium that causes Lyme disease. In fact, it was one of the first strains ever identified - found in the cerebrospinal fluid of a patient with severe Lyme meningitis . But now Wei-Gang Qiu, PhD, Benjamin Luft, MD, and colleagues find that the particularly nasty ospC type A strain appears to be the most common of the 20 or so B. burgdorferi strains found in the U.S. The spread of this virulent strain, they suggest, could be part of the reason for the increase in Lyme disease cases seen over the past two decades. "OspC type A is the type most widely distributed in the U.S. - and, as others have shown, this is the most virulent strain," Qiu, an assistant professor at New York's Hunter College, tells WebMD. "If this is widespread, it is not good. You don't want to see this thing to increase." Luft, professor of medicine and former chief of infectious diseases at SUNY Stony Brook, says the spread of the ospC type A strain may explain part of the U.S. Lyme disease epidemic. "Perhaps part of the Lyme disease story is not that B. burgdorferi just emerged in the 1970s, but that this group of strains that cause more disease became more dominant in our environment," Luft tells WebMD. "So instead of people getting infected with less virulent strains, they got infected with a more virulent strain and got more disease." Qiu and Luft note that the rise of a more virulent Lyme spirochete isn't the whole story. People get the infection from the bite of a deer tick. As suburbs encroach on rural areas, and as more homes are built near forests, more people are at risk of tick bites. Increased exposure to ticks accounts for most of the increase in Lyme disease. Qiu and colleagues found that the ospC type A strain is the most widespread strain in the U.S. It's also widespread in Europe. That was a surprise, as Lyme disease spirochetes in Europe are spread by different ticks and harbored by different animal hosts than in the U.S. "What is surprising is these ospC type A strains in the U.S. and in Europe are genetically almost identical," Qiu says. "So this type is quite unusual in its ability to colonize new habitats... This is very strong evidence for this type having a very broad ecological niche in terms of the species that can carry it." "This means it went from one continent to another continent relatively recently," adds Luft. "And it means that, as Europe and U.S. have very different ecosystems, this strain is highly adaptable to new environments... This makes it a formidable foe - and it causes significant disease." It's not clear whether this bad Lyme germ traveled from North America to Europe or vice versa. And it's not clear when this happened, although it seems to have occurred in the last 200 years, possibly when a tick-infested bird crossed the Atlantic. It's likely, Qiu says, that this strain will continue to become more prominent in areas where Lyme disease is established. CDC medical epidemiologist Kevin Griffith, MD, MPH, says that while Lyme disease has been reported in nearly every state, 10 mostly Northeastern states account for 92% of cases. Although the 20,000 cases reported to the CDC in 2006 were fewer than the 23,000 cases reported in 2005, Griffith says the true number of cases is probably larger. "There is probably a true increase in the number of cases," Griffith tells WebMD. The good news, he says, is that there's been a drop in the most severe, late-stage manifestations of Lyme disease. He attributes this to doctors identifying the disease - and beginning treatment - sooner now than in the earlier years of the epidemic. Qiu and colleagues report their findings in the July issue of the CDC's Emerging Infectious Diseses. (Are ticks bad in your area ? What do you do to watch out for them? Talk with others on WebMD's Health Cafe message board.) By Daniel DeNoon Reviewed by Louise Chang "Six of these strains we studied were taken from patients, not ticks," added Schutzer, which provided more precise clinical information on how infections manifest. ——— © 2010, Newsday. Visit Newsday online at http://www.newsday.com/. Distributed by McClatchy-Tribune Information Services.

Thank you lyme mom -- that would be great.

This is a very quick update on the federal investigation that was ordered by the Congress of the NIH on Lyme and other Tick Borne Diseases last year. This decree ordered the NIH to convene a conference to study the "state of the science" in an objective, unbiased manner bringing together as many divergent views as possible. The NIH hired the Institute of Medicine (IOM) to hold this conference. The reason for this message is that this hearing is available live now, and also is providing video links for viewing later by the public. If you view live, you can submit questions from the public. http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12858&type=flv&test=0&live=0 What is most notable in this hearing, is the science elucidating chronic lyme (it's a given that it exists), and the devastating impact of these illnesses, as well as the chronic form of Babesiosis which has been found to have a mortality rate of 3-20% especially in immuno-compromised patients. In addition, it was found that several co-infections are immuno-suppressant, and working altogether set the scene for a severe, intractable, not well understood chronic illness. It was clearly found that the combination of Borrelia (Lyme) and Babesia cause an especially difficult disease to eradicate and part of this derives from the finding that these organisms have an "open" structure and can exchange DNA, creating an ever evolving organism. What is beautiful to behold is how much real science is going on to better understand these diseases that is now getting a spotlight - and clearly the need for better and more research. The best news is that very recent evolutions in proteomics give great hope that quick progress can now be made. In addition, finally, the basic science is being done - just recently (published this month by Benjamin Luft, PHD), 13 major strains of Borrelia have now been genetically sequenced --this data has been extremely revealing and now provides the necessary basis to really understand this illness, without the confusion of many "definitions" of Lyme disease that have had little or no biological basis (EM rash, swollen knee, CDC positive test). This conference is about the "state of the science" and the direction and need for federal future research, and will result in a summary with recommendations to that affect that will be provided to the US Congress. Even though it is focused on research, as it is intended to be unbiased and has been funded by the US Govt, it will have significant weight for the current treatment and approach to Lyme disease. For many of you suffering from these diseases, you should take heart -- the science is telling the story, and revealing what patients have been experiencing, and even more importantly, recent evolutions should speed up progress on better diagnostics and better treatment strategies. There is progress. These webcasts will be available on line for a while (don't know how long) - take advantage of them and pass this on to interested parties. An update on the state of legislation in PA will follow later this week. Chair, LymeAction PA, a state-wide coalition, www.lymeactionpa.com

What is the best way to check your house for mold? Our finished basement was flooded twice. The first time we didn't remove the padding/carpet. The 2nd time we had it replaced but I didn't see any visible signs of mold. I often wonder if there's mold behind the sheetrock. Should I invest in a "do it yourself test" or call a professional? -Thanks

I'm sure you meant to type "he is NOW getting closer to 100%"

"persistent infection after inadequate treatment" -- I'm thinking that's what's going on with us. She goes on to say "it becomes more difficult to treat". Thanks for posting this article!

My dd had them on her buttocks and upper thighs. She was constantly scratching at them. Her ped gave us Retin A to put on every 5th one (very small amount). They went away in about 9 mths. It left some scarring but thats now gone as well.