Lähettäjä: Soijuv Lähetetty: 25.11.2005 14:53
Mielenkiintoinen sivu! Sivulla esitellään vuoden 1999 borrelioosikongressin satoa. Borrelioosin diagnosointi ja hoito riittämätöntä (C. R. Jones), negatiivinen vasta-ainetesti ei poissulje borrelioosia (S. Donta) jne.
Karenin tarina: Karen perusti miehensä kanssa Borrelioosiyhdistyksen (Lyme Disease Foundation) löytääkseen avun lapsensa borrelioosiin. Karenia puri punkki v. 1985. Hänellä ilmeni outoja oireita raskauden aikana; maku-/hajuaisti katosivat, rytmihäiriöitä, uupumusta jne. Hänen lapsellaan oli syntyessään tulehdus aivoissa. Myöhemmin lapsella todettiin borrelioosi ja hän kuoli 5-vuotiaana.
Sivulta löytyy useita mielenkiintoisia tarinoita mm. borreliabakteerista ja kuva kystamuodosta.
THE BACTERIA REVOLUTION
Friday, May 28 & June 4, 1999
CBC Radio One, 9:05 pm
ILLUSTRATED SUMMARY
12th International Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders in New York CityPart One of The Bacteria Revolution begins at the 12th International Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders in New York City, where about 350 people have gathered to review the latest information about Lyme and other tick-borne diseases.
The conference is sponsored by the Lyme Disease Foundation, headed by Karen Vanderhoof-Forschner, Karen Vanderhoof-Forschnerwho was bitten by a deer tick in 1985. She didn't think much of it at the time, but upon becoming pregnant, she experienced a series of multi-system disorders, including loss of taste and smell, irregular heartbeats, and profound fatigue, although it was hard to relate these diverse symptoms to her earlier tick bite. When her son was born, however, he had evidence of a brain infection, and was later found to have Lyme disease. Forschner and her husband decided to form the foundation, hoping it would find solutions for their son. It didn't, alas: he died in 1991 at the age of 5. Deer tick
Lyme disease is one of several diseases spread by insects called deer ticks. Others include human granulytic and monocytic erlichiosis, and babesiosis, which Dr. Gregory Bach of Colmar, Pennsylvania, calls the "brother of malaria". Babesiosis, he says, causes not only fatigue, but what's been called "babesiosis rage". Bach reports that one woman with babesiosis actually took a chain-saw to her furniture, and notes these exaggerated reactions have been been implicated in suicides, even certain crimes.
Kenneth LiegnerSorting out all the various symptoms caused by tick-borne diseases is no picnic, and both the detection and the treatment of Lyme are surrounded by controversy. As Dr. Kenneth Liegner from the New York Medical Center in Armonk, New York, points out, many academicians have staked their reputations on the view that Lyme disease is easily diagnosed and cured. However Liegner is convinced, based on many years of clinical experience, that many patients are difficult to diagnose and there may be no way of curing this infection with currently available methods.
James MillerThese uncertainties are front and center at the New York conference, which is chaired by Professor James N. Miller, of the Department of Microbiology and Immunology at the University of California at Los Angeles School of Medicine. Miller agrees that there's not a clear consensus with respect to how to diagnose Lyme disease. He points out there is no unequivocally perfect test for diagnosing the disease in people without a characteristic rash. Many develop atypical rashes, or none at all, and enter into a "latent" state - which may be short or long - where there is nothing visibly happening. "Because some of the clinical manifestations in early Lyme disease can be very subtle, generalized and referable to other diseases", he says, "this makes it difficult to diagnose", adding the blood tests for Lyme have problems in terms of their specificity, sensitivity and reproducibility.
Charles Ray JonesThis uncertainty over the blood tests makes it hard for doctors to say whether a patient really has the infection or not. Dr. Charles Ray Jones works in pediatric and adolescent medicine in Hamden, Connecticut, with a practice of 1500 children with Lyme disease, ranging in age from 1 day to 18 years old. "Judging from the pattern of presentation, I feel that it is way under-diagnosed and way under-treated", he says, meaning that many cases are never identified by doctors. Even among those people who do receive treatment, many still go on to suffer a variety of ills, ranging from headaches and depression to arthritis, but it's not clear whether this hodge-podge of symptoms is due to the Lyme disease or something else.
Borrelia burgdorferiLyme disease got its name from the towns where it was first identified - Lyme and Old Lyme, Connecticut. In 1975, unusual arthritis cases were being reported in children. A type of bacteria, known scientifically as Borrelia burgdorferi, was subsequently isolated from deer ticks, and later confirmed as the cause of the illness. Recently, using high-tech DNA amplification techniques, researchers have found evidence of this bacterium dating back to Paleolithic times. Even though this agent was not even known to exist until recently, Liegner is confident it has been affecting people for millenia. The conditions it induced were called by other names, he suggests, without anyone suspecting these illnesses had an infectious cause. He adds we still don't know the range of symptoms this bacterium - and others like it - might cause.
Sam DontaBut the notion that Lyme disease can persist in a chronic form, causing all sorts of problems for patients - even after treatment - has been hard for some researchers to accept. When Dr. Sam Donta, a leading Lyme specialist who works at Boston University's School of Medicine, first went to workshops held by early experts on the disease, he was told it only needed to be treated for two to four weeks. Yet when he saw patients start - but not finish - getting better, he looked back at the original recommendations, and discovered they were being advocated without scientific foundation.
Donta says one cannot conclude that there is no infection if blood tests are negative, and speculates the Lyme bacteria may have instead gone into hiding someplace. "People were interpreting the absence of the organism in those body fluids as meaning there wasn't any infection," he notes, "but if you think about it logically, you cannot conclude that."
Donta began comparing the standard blood tests for Lyme disease with more sophisticated tests, and soon started to question the conventional wisdom on Lyme, established by the American government's Centers for Disease Control (CDC). He began to put the picture together, and when the CDC criteria for the lab diagnosis were established, it was clear to him that those were not accurate criteria. "The shame of that now", he says, "is that physicians are still relying on a negative test as meaning that a person doesn't have Lyme disease."
While Dr. Donta and his colleagues work to uncover the true extent of Lyme disease, others downplay the very notion of chronic Lyme. The insurance industry, for example, is often reluctant to pay for better tests or lengthier courses of treatment, without clear evidence that patients are still infected. Karen Vanderhoof-Forschner says, "There is a lot of money out there to be made by having expert witnesses at trials for insurance companies say who does and who doesn't definitively have Lyme, so there is money to be made for those who feel they can clearly and easily separate those who have the infection from those who are disease wannabees."
There's no shortage of patients who have joined coalitions, like the Lyme Disease Foundation, to Lyme Disease Foundationagitate for more research. Donta recognizes that because patients aren't dying right and left with Lyme, there isn't the support there is with AIDS, but from his perspective, Lyme is pervasive. Liegner suggests there are so many different manifestations that we're going to find that Lyme disease has a role in a lot of things that we do not yet accept or realize.
Indeed, there may be overlaps with diseases like fibromyalgia, chronic fatigue syndrome (CFS) - even Gulf War illness. Donta says "We're dealing with a whole new set of disorders, and people haven't stretched their mind to think of a different model. We've been spoiled with our antibiotics to treat acute disorders that come and go rapidly, and since there are often no objective signs [of Lyme infection], you tend to dismiss it, you say the person made it up or it's psychosomatic."
Martin FreidPsychosomatic illness - originating not from external influences but in the mind of the patient - is a label often used by doctors when they just can't figure out what's making somebody sick. But now that doctors have better techniques for zeroing in on hidden infections, they're finding Lyme bacteria in all kinds of patients - even those who don't show the typical symptoms of Lyme.
For example, Dr. Martin Freid recently presented evidence of infection with the Lyme germ in patients with Crohn's disease, an inflammation of the bowel which affects some 50,000 Canadians, and whose precise cause has eluded medical researchers.
Dr. Gordon Greenberg, Professor of MediciGordon Greenbergne at the University of Toronto and head of the Division of Gastroenterology at Mount Sinai, says it's not clear exactly what causes either Crohn's disease, or another inflammatory bowel disease called ulcerative colitis. He notes, "There has always been the concept that a single infectious etiology might be the cause of Crohn's or ulcerative colitis, but to date no single bacterium or virus has been linked with either disease. What is clear, however, is that bacterial flora within the gut, at least in a secondary way, perpetuate the inflammatory process in Crohn's."
Greenberg cites several lines of evidence, including studies from his own center, on the effect of specific antibiotics, which he's found to be particularly effective in helping to control the inflammation of Crohn's disease. His initial data suggest improvement or remission in up to 63% of Crohn's patients treated with antibiotics. "More and more the concept is emerging that bacteria do play an important role, and that selected antibiotics are quite helpful in the management of patients with Crohn's disease," Greenberg notes.
Dr. Freid recently saw an 8-year-old girl with blood in her stool, a typical symptom of ulcerative colitis. He prescribed medicine to calm the inflammation, but he also sent a tissue biopsy off for analysis. Surprisingly, it revealed an active Lyme infection. He put the girl on antibiotics for a month, and she made a complete recovery. "That's not the nature of ulcerative colitis, which would come back. But an infection would go away if treated properly. I thought it was fascinating."
Neither Dr. Fried nor Dr. Greenberg is sure just what's going on in their patients, but the evidence certainly points to a role for bacteria. This uncertainty over causation extends as well to mysterious problems like chronic fatigue and fibromyalgia. Some think the Lyme bug may be to blame for a lot of cases, others suspect another organism called a mycoplasma - it's going to be a while until we know for sure.
Garth NicolsonProfessor Garth NicolsonInstitute for Molecular Medicine, chief scientific officer at the Institute for Molecular Medicine in Huntington Beach, California, works on a variety of diseases, including CFS, fibromyalgia, Gulf War syndrome, rheumatoid arthritis, and a number of auto-immune diseases, including MS, ALS (Lou Gehrig's disease), and Graves' disease. These are for the most part interrelated disorders, Nicolson says, particularly CFS, fibromyalgia and Gulf War syndrome, but there are certain unique characteristics that typify the disorders: fibromyalgia symptoms include muscle pain, aching and tenderness all over the body, as well as a number of secondary symptoms that overlap with CFS.
The origin of these diseases has been open to speculation, with suggested causes including genetics or environmental exposure to chemicals. Nicolson and colleagues have been very interested in the role of infectious micro-organisms like mycoplasmas, and bacteria known as chlamydia, in the progression of these diseases, and have found chronic infections in the majority of patients suffering from them. For example, approximately 70% of Nicolson's fibromyalgia patients have mycoplasmal infections in their blood, which he says go deep into tissues and are responsible for much of their sickness. When appropriately treated with long-term antibiotics, these patients can apparently recover, although this is dependent on a number of other factors, including other infections and chemicals in their systems. Nicolson and his institute have convinced the U.S. Department of Defense to conduct an $8 million clinical trial, testing the effects of various antibiotics in patients with Gulf War syndrome.
But it's going to be long time before this kind of research effort is brought to bear on patients suffering from what is thought to be chronic Lyme disease, because no one seems to be able to prove they're still infected with the Lyme bacterium."A Proposal for the Reliable Culture of Borrelia burgdorferi from Patients with Chronic Lyme Disease, Even from Those Previously Aggressively Treated" InfectionAll that may change, however, with a bombshell discovery published in the November/December 1998 issue of the prominent medical journal Infection (vol. 26, p. 364-367). In a controversial paper entitled "A Proposal for the Reliable Culture of Borrelia burgdorferi from Patients with Chronic Lyme Disease, Even from Those Previously Aggressively Treated", American researchers describe a complex technique with which they can find previously undetectable Lyme bacteria in the blood of patients with chronic disease (click here to listen to a brief audio clip of the lead author, Greenwich, Connecticut internist Dr. Steven Phillips, discussing the results of his study).
JATKUU..
http://www.radio.cbc.ca/programs/ideas/ ... teria.html
BORRELIOOSI SYNTYMÄSTÄ SAAKKA
Valvojat: Jatta1001, Borrelioosiyhdistys, Bb
BORRELIOOSI SYNTYMÄSTÄ SAAKKA
Viimeksi muokannut Bb, La Huhti 10, 2010 13:45. Yhteensä muokattu 2 kertaa.
Lähettäjä: Soijuv Lähetetty: 6.1.2006 11:39
Kolme viestiä joissa kerrotaan raskaana olevista naisista joilla on borrelioosi ja sen vaikutuksesta lapseen:
1. Aloin oireilla kun olin neljännellä kuulla raskaana. Annoin lapselle rintamaitoa 18 kk ikään saakka. Tuona aikana oireeni pahenivat. Vasta 8 vuoden kuluttua tästä sain tietää sairastavani borrelioosia. Nyt lapseni on 11 v. ja ELISA testissä proteiini 31 on positiivinen. Poika voi kuitenkin hyvin tällä hetkellä. Perheen tytär sairastui borrelioosiin 10 v ikäisenä.
2. Sairastuin borrelioosiin raskauden aikana. Oireeni pahenivat synnytyksen jälkeen. Lapsi sai rintamaitoa 2v jonka jälkeen tulin jälleen raskaaksi. Poikani vaikutti ok alussa. Hän alkoi oireilla pahemmin noin 10-vuotiaana. Poika ja tytär sairastivat jatkuvia streptokokki infektioita ja ajoittain lapset sairastivat jatkuvasti erilaisia infektioita. 11-vuotiaana poika itki sitä että on sairas koko ajan. Tällöin veimme lapsen lääkärille joka epäili lapsen sairastavan synnynnäistä borrelioosia. Vuoden antibioottikuuri teki ihmeitä. Tämän jälkeen poika oli terveenä useamman vuoden ajan. Nyt hän on 28-vuotias ja saa antibioottihoitoja aina tarpeen tullen. Pojalla on ollut myöhemmin uusi punkinpurema.
3. "Kollegani kertoi minulle tänään että hän on juuri diagnosoinut borrelioosin 6 kk:n ikäisellä lapsella joka on rintaruokinalla". Ei tiedetä onko lapsi saanut borrelioosin jo ennen syntymäänsä vai vasta rintaruokinnan aikana.
1. I had my first symptoms when I was nursing my youngest who was then 4 months old. I nursed him until he was 18 months old at which time I became quite ill and had to wean him so my dangerously high blood pressure could be treated. I didn't know it was Lyme for 8 more years. He is 11 years old now, has a positive ELISA from Stony Brook and band 31 on his western blot. Other than gluten intolerance he has never had any significant medical problems. I took him to Dr. Jones for his opinion (he was treating my then 13 year old daughter who had symptoms consistent with Lyme, after having been completely well for 3 years since being treated for acute Lyme with an EM rash when she was 10). My son had a sore throat at the time of the visit which came back positive for strep. He was treated with high dose Amoxicillin for two weeks and did not Herx at all. Other than a single migraine a couple of years ago, he has never had any common Lyme symptoms. We'll never know if his suspicious tests have anything to do with nursing since he lived in endemic areas his whole life until we moved to the southwest last year. He is the only well one in the family. He also was bitten by a deer tick on his ear once and when I went to remove it, it was dead and not engorged. No trauma to the tick, just dead. Must have died shortly after the bite. Go figure. We tease him and call him the Western Fence Lizard. I worry about him (to myself) frequently, but so far so good. He is energetic, funny, academically advanced and generally feels well.
I don't know how you can possibly tell if a baby who lives in an endemic area has been exposed from nursing or from the environment. Personally I think anyone who has Lyme or kids with Lyme should live in a low risk area if at all possible. It is too important to be able to tell the difference between a relapse and a reinfection and too dangerous for someone who has shown themselves to be susceptible to the disease to risk further exposure.
If the mother had an acute illness, assuming the baby is clinically well, I would treat her with something safe for the baby and advise her to continue nursing. If you test the baby you won't know how to interpret any suspicious tests and you will stress out the mother so badly that her chances of a full recovery will be reduced. The reality is that nobody knows the answer to your question, so primum non nocere.
2. I contracted Lyme when pregnant and started to be very symptomatic right after the birth. I nursed the baby almost 2 years, got pregnant again. My son seemed ok until he was older, although looking back I can see things in his health history that seem suspicious. I wasn't diagnosed until he was 10, in '87, and by then he was having chronic problems. Actually he and his younger sister both would pass infections back and forth, strep especially they seemed to get all the time, and there were periods when they went from one sickness to the next. Not all had names although we did have chickenpox and that kind of thing.. By 1988 sometimes he would wail and cry about being sick all the time, and we had him looked at by my LLMD, who thought he could have congenital Lyme. An old photo showed a possible bilateral Bell's. A year of abx did wonders for his health status and he was quite healthy after that for quite a few years. Nowadays (he is 28 ) he goes on treatment every few years, as needed. He could have had multiple tick bites - I know of one or two.
I wonder if being infected in utero fools the immune system - after all, if they have always had it, how would the immune system know it was foreign?
I know there are LLMDs who advise the mother to quit breastfeeding, but I'm glad I didn't. Still, I understand the dilemma. No one wants to hurt the baby. But what if you avoid Lyme by not nursing, the child catches Lyme anyway, plus has allergies or other ailments because he was fed on formula?
3. "..a colleague told me today he had just diagnosed lyme, uncertain duration, in a breastfeeding mom with a six month old."
Kolme viestiä joissa kerrotaan raskaana olevista naisista joilla on borrelioosi ja sen vaikutuksesta lapseen:
1. Aloin oireilla kun olin neljännellä kuulla raskaana. Annoin lapselle rintamaitoa 18 kk ikään saakka. Tuona aikana oireeni pahenivat. Vasta 8 vuoden kuluttua tästä sain tietää sairastavani borrelioosia. Nyt lapseni on 11 v. ja ELISA testissä proteiini 31 on positiivinen. Poika voi kuitenkin hyvin tällä hetkellä. Perheen tytär sairastui borrelioosiin 10 v ikäisenä.
2. Sairastuin borrelioosiin raskauden aikana. Oireeni pahenivat synnytyksen jälkeen. Lapsi sai rintamaitoa 2v jonka jälkeen tulin jälleen raskaaksi. Poikani vaikutti ok alussa. Hän alkoi oireilla pahemmin noin 10-vuotiaana. Poika ja tytär sairastivat jatkuvia streptokokki infektioita ja ajoittain lapset sairastivat jatkuvasti erilaisia infektioita. 11-vuotiaana poika itki sitä että on sairas koko ajan. Tällöin veimme lapsen lääkärille joka epäili lapsen sairastavan synnynnäistä borrelioosia. Vuoden antibioottikuuri teki ihmeitä. Tämän jälkeen poika oli terveenä useamman vuoden ajan. Nyt hän on 28-vuotias ja saa antibioottihoitoja aina tarpeen tullen. Pojalla on ollut myöhemmin uusi punkinpurema.
3. "Kollegani kertoi minulle tänään että hän on juuri diagnosoinut borrelioosin 6 kk:n ikäisellä lapsella joka on rintaruokinalla". Ei tiedetä onko lapsi saanut borrelioosin jo ennen syntymäänsä vai vasta rintaruokinnan aikana.
1. I had my first symptoms when I was nursing my youngest who was then 4 months old. I nursed him until he was 18 months old at which time I became quite ill and had to wean him so my dangerously high blood pressure could be treated. I didn't know it was Lyme for 8 more years. He is 11 years old now, has a positive ELISA from Stony Brook and band 31 on his western blot. Other than gluten intolerance he has never had any significant medical problems. I took him to Dr. Jones for his opinion (he was treating my then 13 year old daughter who had symptoms consistent with Lyme, after having been completely well for 3 years since being treated for acute Lyme with an EM rash when she was 10). My son had a sore throat at the time of the visit which came back positive for strep. He was treated with high dose Amoxicillin for two weeks and did not Herx at all. Other than a single migraine a couple of years ago, he has never had any common Lyme symptoms. We'll never know if his suspicious tests have anything to do with nursing since he lived in endemic areas his whole life until we moved to the southwest last year. He is the only well one in the family. He also was bitten by a deer tick on his ear once and when I went to remove it, it was dead and not engorged. No trauma to the tick, just dead. Must have died shortly after the bite. Go figure. We tease him and call him the Western Fence Lizard. I worry about him (to myself) frequently, but so far so good. He is energetic, funny, academically advanced and generally feels well.
I don't know how you can possibly tell if a baby who lives in an endemic area has been exposed from nursing or from the environment. Personally I think anyone who has Lyme or kids with Lyme should live in a low risk area if at all possible. It is too important to be able to tell the difference between a relapse and a reinfection and too dangerous for someone who has shown themselves to be susceptible to the disease to risk further exposure.
If the mother had an acute illness, assuming the baby is clinically well, I would treat her with something safe for the baby and advise her to continue nursing. If you test the baby you won't know how to interpret any suspicious tests and you will stress out the mother so badly that her chances of a full recovery will be reduced. The reality is that nobody knows the answer to your question, so primum non nocere.
2. I contracted Lyme when pregnant and started to be very symptomatic right after the birth. I nursed the baby almost 2 years, got pregnant again. My son seemed ok until he was older, although looking back I can see things in his health history that seem suspicious. I wasn't diagnosed until he was 10, in '87, and by then he was having chronic problems. Actually he and his younger sister both would pass infections back and forth, strep especially they seemed to get all the time, and there were periods when they went from one sickness to the next. Not all had names although we did have chickenpox and that kind of thing.. By 1988 sometimes he would wail and cry about being sick all the time, and we had him looked at by my LLMD, who thought he could have congenital Lyme. An old photo showed a possible bilateral Bell's. A year of abx did wonders for his health status and he was quite healthy after that for quite a few years. Nowadays (he is 28 ) he goes on treatment every few years, as needed. He could have had multiple tick bites - I know of one or two.
I wonder if being infected in utero fools the immune system - after all, if they have always had it, how would the immune system know it was foreign?
I know there are LLMDs who advise the mother to quit breastfeeding, but I'm glad I didn't. Still, I understand the dilemma. No one wants to hurt the baby. But what if you avoid Lyme by not nursing, the child catches Lyme anyway, plus has allergies or other ailments because he was fed on formula?
3. "..a colleague told me today he had just diagnosed lyme, uncertain duration, in a breastfeeding mom with a six month old."
Viimeksi muokannut Bb, La Huhti 10, 2010 13:45. Yhteensä muokattu 1 kertaa.
Lähettäjä: Soijuv Lähetetty: 7.1.2006 10:15
Sivulla olevat tapausselostukset ovat herättäneet Amerikassa huomiota myös sellaisten henkilöiden keskuudessa jotka kuuluvat "Rintamaidon etuja ajavaan yhdistykseen". Yhdistys on nyt ottanut yhteyttä tutkijoihin ja lääkäreihin jotta mm. borrelioosin leviämistä rintaruokinnan kautta alettaisiin tutkia tarkemmin.
Yhdellä äidillä oli borrelioosi molempien raskauksien aikana. Hän käytti koko raskauden ja rintaruokinnan ajan amoksisilliinia. Lapset ovat nyt 6. ja 7-vuotiaita ja vaikuttavat terveiltä. Äiti on käyttänyt antibioottia 10 vuoden ajan. Hän on päättänyt olla testaamatta lapsia mikäli heille ei tule oireita.
".. She has two healthy daughters, about 6 and 7 yrs old now who appear healthy. She has chosen not to test them unless they develop symptoms. Her pregnancies were intentional and she nursed them for two years each. She has been taking Amoxicillin for about 10 years, through both pregnancies and breast feeding without a break."
Seuraavan viestin äidillä on kaksi borrelioosia sairastavaa lasta. Tytär on nyt 27 v. ja hän on ollut vuodepotilaana viimeiset 15 v. Poika on nyt 21 v. Hänen oireensa alkoivat 10-vuotiaana. Perheen elämä on sen jälkeen ollut yhtä painajaista. Tauti on mm. pojan munuaisissa. Pojalle on kerrottu että hänellä on tällä hetkellä 30 %:n mahdollisuus menettää munuaisensa.
Äiti epäilee sairastaneensa borrelioosia jo odottaessaan ensimmäistä lastaan. Hän ei ole varma saivatko lapset tartunnan häneltä jo odotusaikana sillä lapset ovat saaneet punkinpuremia myös myöhemmin. Hänen mielestään lasten oireet saattavat olla useamman pureman vuoksi niin voimakkaat.
Äiti tuntee myös tapauksen jossa perheen kaksi borrelioosia sairastavaa tytärtä olivat hengityskoneessa vuosien ajan. Vanhempi tyttäristä kuoli 13-vuotiaana.
"If I KNEW that I was sick with an infection that could be transmitted, I would not believe that the benefits outweighed the risks, not when I have a 27 yo daughter who has been bedridden for 3/4 of the last 15+ years. I do not look on this as a lesser evil than AIDS. My daughter says that she would rather have leukemia or AIDS or even be a quadraplegic than be in the condition she is in. She thinks that she would have more of a life as a quadraplegic than she has now and I have heard that expressed by other Lyme kids. I know one mom who had two girls on a respirator for years. The oldest was on one for 13 years before she died. They both became deaf and legally blind.
We have never I suppose lived in an endemic area nor have I. But, after many years, I do believe that I probably had Lyme when my daughter was born and while breastfeeding though I wasn't really sick at the time. She was a healthy kid but she did have a life-threatening reaction to Ceclor at age 4 and funnily enough it was 3 days after completeing the 10 day course. But, then she was extremely healthy til age 12, gymnastics, soccer, ballet. And she was good at all of them. Then we moved to TN to 10 acres of woods and not just my daughter but my 10 yo son became ill. And it has been a nightmare. My 21 yo son now has been told that he has a 30% chance of losing his kidneys. This thing eats up brains, eyes, hearts, and vital organs. And it is sneaky about it too.
I believe that multiple exposures can increase the risk of worse outcomes. There was a study with mice that showed they did not become infected on the first exposure to an infected tick. But, after the second exposure they did. I believe that some of the sickest people may be that way because they have been exposec at different times and probably to different strains or organisms and co-infections.
If you have a known illness in a mother, I would say err on the side of caution because I think it is much too terrible to risk having a child develop some of the things that I have seen."
Sivulla olevat tapausselostukset ovat herättäneet Amerikassa huomiota myös sellaisten henkilöiden keskuudessa jotka kuuluvat "Rintamaidon etuja ajavaan yhdistykseen". Yhdistys on nyt ottanut yhteyttä tutkijoihin ja lääkäreihin jotta mm. borrelioosin leviämistä rintaruokinnan kautta alettaisiin tutkia tarkemmin.
Yhdellä äidillä oli borrelioosi molempien raskauksien aikana. Hän käytti koko raskauden ja rintaruokinnan ajan amoksisilliinia. Lapset ovat nyt 6. ja 7-vuotiaita ja vaikuttavat terveiltä. Äiti on käyttänyt antibioottia 10 vuoden ajan. Hän on päättänyt olla testaamatta lapsia mikäli heille ei tule oireita.
".. She has two healthy daughters, about 6 and 7 yrs old now who appear healthy. She has chosen not to test them unless they develop symptoms. Her pregnancies were intentional and she nursed them for two years each. She has been taking Amoxicillin for about 10 years, through both pregnancies and breast feeding without a break."
Seuraavan viestin äidillä on kaksi borrelioosia sairastavaa lasta. Tytär on nyt 27 v. ja hän on ollut vuodepotilaana viimeiset 15 v. Poika on nyt 21 v. Hänen oireensa alkoivat 10-vuotiaana. Perheen elämä on sen jälkeen ollut yhtä painajaista. Tauti on mm. pojan munuaisissa. Pojalle on kerrottu että hänellä on tällä hetkellä 30 %:n mahdollisuus menettää munuaisensa.
Äiti epäilee sairastaneensa borrelioosia jo odottaessaan ensimmäistä lastaan. Hän ei ole varma saivatko lapset tartunnan häneltä jo odotusaikana sillä lapset ovat saaneet punkinpuremia myös myöhemmin. Hänen mielestään lasten oireet saattavat olla useamman pureman vuoksi niin voimakkaat.
Äiti tuntee myös tapauksen jossa perheen kaksi borrelioosia sairastavaa tytärtä olivat hengityskoneessa vuosien ajan. Vanhempi tyttäristä kuoli 13-vuotiaana.
"If I KNEW that I was sick with an infection that could be transmitted, I would not believe that the benefits outweighed the risks, not when I have a 27 yo daughter who has been bedridden for 3/4 of the last 15+ years. I do not look on this as a lesser evil than AIDS. My daughter says that she would rather have leukemia or AIDS or even be a quadraplegic than be in the condition she is in. She thinks that she would have more of a life as a quadraplegic than she has now and I have heard that expressed by other Lyme kids. I know one mom who had two girls on a respirator for years. The oldest was on one for 13 years before she died. They both became deaf and legally blind.
We have never I suppose lived in an endemic area nor have I. But, after many years, I do believe that I probably had Lyme when my daughter was born and while breastfeeding though I wasn't really sick at the time. She was a healthy kid but she did have a life-threatening reaction to Ceclor at age 4 and funnily enough it was 3 days after completeing the 10 day course. But, then she was extremely healthy til age 12, gymnastics, soccer, ballet. And she was good at all of them. Then we moved to TN to 10 acres of woods and not just my daughter but my 10 yo son became ill. And it has been a nightmare. My 21 yo son now has been told that he has a 30% chance of losing his kidneys. This thing eats up brains, eyes, hearts, and vital organs. And it is sneaky about it too.
I believe that multiple exposures can increase the risk of worse outcomes. There was a study with mice that showed they did not become infected on the first exposure to an infected tick. But, after the second exposure they did. I believe that some of the sickest people may be that way because they have been exposec at different times and probably to different strains or organisms and co-infections.
If you have a known illness in a mother, I would say err on the side of caution because I think it is much too terrible to risk having a child develop some of the things that I have seen."
Viimeksi muokannut Bb, Su Huhti 18, 2010 17:25. Yhteensä muokattu 3 kertaa.
Lähettäjä: Soijuv Lähetetty: 8.1.2006 16:11
"Tyttäreni sairastui borrelioosiin rintaruokinnasta. En saanut hoitoa siihen aikaan. Paikallinen lääkäri sanoi ettei tauti tartu rintaruokinnan välityksellä - hän oli väärässä. Nyt vuosien kuluttua, hän voi hyvin. Annan parhaillaan rintamaitoa nuorimmalle tyttärellemme - olen yhtä aikaa antibioottihoidolla (amoksisilliini 1500mg x 3). Lapsi voi tällä hetkellä hyvin. Kolme muutakin äitiä antaa lapsilleen rintamaitoa + ovat antibioottihoidolla ja heidän lapsensa voivat hyvin."
My older daughter was infected through breastfeeding when I was acutely ill and not being treated (my local doc said it was impossible to transmit through breastmilk- he was wrong). Now years later, doing great, I am on amoxicillin and breastfeeding and so far my younger daughter has been fine.
3 local women (California) besides myself have breastfed while on
antibiotics and all of our kids have been fine- one did it with 3 kids, the
others each with 2- and if I had not seen them do it successfully I never would have myself. I would also *never* breastfeed if I weren't so well (99.9%) or weren't on abx (1500 amoxi 3 times a day).
"Tyttäreni sairastui borrelioosiin rintaruokinnasta. En saanut hoitoa siihen aikaan. Paikallinen lääkäri sanoi ettei tauti tartu rintaruokinnan välityksellä - hän oli väärässä. Nyt vuosien kuluttua, hän voi hyvin. Annan parhaillaan rintamaitoa nuorimmalle tyttärellemme - olen yhtä aikaa antibioottihoidolla (amoksisilliini 1500mg x 3). Lapsi voi tällä hetkellä hyvin. Kolme muutakin äitiä antaa lapsilleen rintamaitoa + ovat antibioottihoidolla ja heidän lapsensa voivat hyvin."
My older daughter was infected through breastfeeding when I was acutely ill and not being treated (my local doc said it was impossible to transmit through breastmilk- he was wrong). Now years later, doing great, I am on amoxicillin and breastfeeding and so far my younger daughter has been fine.
3 local women (California) besides myself have breastfed while on
antibiotics and all of our kids have been fine- one did it with 3 kids, the
others each with 2- and if I had not seen them do it successfully I never would have myself. I would also *never* breastfeed if I weren't so well (99.9%) or weren't on abx (1500 amoxi 3 times a day).