This is a truly tragic case of a little boy with Lyme Disease whose doctors failed to diagnose him and then he died. This was not a case of Acute Lyme Disease the boy had been ill three years and so was suffering with Chronic Lyme Disease.
My heart goes out to the Linus' family and thank them for their efforts to ensure no other family will lose a child so un necessarily with a treatable illness such as Lyme Disease.
Below is a translation from the Swedish newspaper original can be found here
Top Photo caption: Linus parents, Lennart and Jeanette Wallberg, report the doctors who missed their son's illness. "We are doing everything that others will not be part of the same thing."
Boy's photo caption:Linus Wallberg fought against his illness a long time - eventually he died, aged 15, of Lyme.
Main body:For several years fought Linus Wallberg, 15, to their pain. Last spring, he died of neurological Lyme disease at home in the family's couch. Now they report three family physicians to Health and Medical Treatment.- I have no confidence in care longer. We are doing everything that others will not be part of the same thing, "says Lennart dad.Linus Wallberg had been sick more than three years.
On several occasions he had been given emergency leave to the emergency department in Nyköping with all-over body pain, severe nausea, and vomiting. But when the family rushed to the hospital were sent home again, Linus usually diagnosed with stomachflu or influenza.- "We believed in what the doctors said. Nobody wants to believe that your child is seriously ill, "said Linus' Mom Jeanette Wallberg.
Doctors dismissed the fears
One of the doctors gave Linus a diagnosis of asthma stomach [needclarification on dx] and said that his pain would disappear by itself overtime. And when Jeanette told the doctor that she was worried that she would one day find her son dead the doctor laughed and dismissed her concerns.
But Linus was seriously ill. Early on the morning of February 17 last year,when Dad would get Lennart Linus, he found him dead in the family's couch.
Autopsy report showed that Linus had died from complications of neuro-Lyme.
- To my knowledge, none of any doctors with Linus tested him for Lyme. Had they taken the spinal cord samples, and gave him antibiotics Linus, he would have lived today. But it felt like they did not take us seriously, "says Jeanette.
Important to the case investigated Linus' parents have now sent three doctors to the health care committee and Responsibility. One of them is Chief Diana Born Welff Stein, who is medical director of children's hospital in Nyköping.- It has stood in the records and they saw symptoms Linus and did not automatically suspect neurological Lyme disease, otherwise they would have investigated and dealt with Linus. But this is a very difficult diagnosis to make, "she says.
Have you failed in the treatment of Linus?- Yes of course I just had to say when a child dies from a treatable disease. I can understand that the family chooses to report and it is important that the case be investigated, "said Diana Stein Born Welff.
But it is of little comfort to Linus family.- They did not believe us. We will never get over this, but if notification helps other parents to avoid going through the same thing [so there is always something], "says Jeanette Wallberg.
Grey box:Facts - Borrelia Less than one in ten people who suffer from Lyme borreliosis may have neurotoxicity. Usually noticeable symptoms show between one to two months after the tick bite, but time may vary from just a few weeks up to six months.
Usually it begins as a skin infection, many notice no change in skin before they get symptoms from the nervous system. Neuro-borreliosis is common among children than adults.(Source: www.1177.se)
two other articles were here and here
Sadly doctors not taking patients seriously when they complain of the symptoms of Lyme Disease is all too common as the several thousand patients who subscribe to Eurolyme will testify to.
It's tragedy if patient died caused undiagnosed disease.
ReplyDeleteThe Autopsy.
ReplyDelete"It is a chronic inflammation of the brain meninges and blood vessels, caused by a previous Borrelia infection," said pathologist Birkhild Giebe (a German lady doctor and therefore free of Swedish ideas of collegial loyalty). Mrs Wallberg conversed with the pathologist who said she thought Linus had suffered from the disease for a long time, probably a couple of years, because the skull had become so tapered by the very strongly swollen brain.
However, at a subsequent meeting with Mr and Mrs Wallberg, Dr Nils Skanke, the head of the paediatric clinic denied that Linus had acute meningitis when he visited the clinic but only meningitis. Ipren was the correct treatment for this and the clinic had therefore followed guidelines.
Dr Diana Bornstein Welff, the consultant at the paediatric clinic, denied that Linus had died from Lyme neuroborreliosis since it is an illness no one dies from. Dr Welff said it is unclear why Linus Wallberg died.
Mrs Wallberg says, "The paediatric clinic does not appear to wish to take account of the pathologist's report and, instead of examining their routines to see what can be done to avoid a repetition, refuses to accept any responsibility and is of the opinion that Linus died of influenza."
Mr and Mrs Wallberg have reported three doctors, Fredrik Lundqvist, Nils Skanke and Diana Bornstein Weiff.
"If we can we save one child then it is worth it. Doctors and nurses need to open their eyes and learn to recognize these symptoms before it is too late."
I became increasingly sick over a number of years with regular episodes of fatigue, pain, flu-type symptoms and eventually terrible headache and vomiting attacks that went on for days. Doctors repeatedly told me I had flu, or a stomach bug or I was working too hard or was suffering from stress. I was taken into hospital twice, once when I couldn't stop vomiting and the other when my blood count crashed and I had to be given a transfusion. None of the doctors linked my symptoms. I ended up bed-ridden. It was only when I managed to do my own research that I discovered about Lyme Disease. All the symptoms I had seemed to fit. I found a private Lyme literate medical doctor by researching the International Lyme & Associated Diseases Society, Lyme Disease Action and BADA-UK websites, and with his treatment I'm gradually getting my health back for the first time in years. Even though we have a National Health Service here in the UK they have refused to cover the cost of my treatment and I have to pay all the medical bills myself, despite still being too sick to work. I've had to sell my home to be able to do this. If it hadn't been for this Lyme doctor I don't think I'd have survived much longer. My greatest sympathy goes out to the Wallberg family, and their friends, for the tragic and avoidable loss of their son.
ReplyDeleteBased on my personal experience, every horrible, traggic Lyme story you read of is in no way any exaggeration. As far as Sweden goes, I live in Sweden, and I have neurological Lyme disease, and I can tell you that everyone should be scared because the Swedish doctors do not know anything, and they do not do anything. It is beyond sad that this child lost his life, but it is no surprise that this happened in Sweden. Many, if not most, Swedish doctors do not give a flip about their patients. And you can try and try for help, but they will ignore you and literally let you die. The patient advocacy groups do not help either. Anyone who thinks that the Swedish system should serve as any kind of positive model is living in total denial. There is no health care in Sweden. Your body either makes it or it doesn't. At best, they'll throw some cheap antidepressant your way.
ReplyDeleteThe same thing just happened to me. My husband was being treated for a spider bite, and he had Acute Leukemia. No one drew blood for three weeks. He died because his white blood count got unbelievably high and clotted causing a massive stroke. If only someone had drawn blood. I go over and over this every day. It has caused me so much pain. My heart goes out to this family. They are probably saying the same thing I am "If only". God Bless.
ReplyDeleteI live in the UK & was bitten by a tic on the first night whilst on a 3 week holiday in the Julian alps, but didn't realise till about 3 weeks later when I returned to the UK. It was only after a series of events that I saught medical help. Although I was prescribed antibiotics for 2 weeks, an error was made & I was given antibiotics containing Lactose so it was about 5-6 wks before I got the correct Lactose free antibiotics. Info I received from outside sources suggested that the blood tests were taken too late & supprise supprise, came back negative. no spinal fluid tests have been done to date. Because of the negative blood test result. I have been labled as suffering with ME/CFS so when I saw this, it struck a very familliar chord. That was back in 2007. Now I am house bound, spending most of my time in bed at night or laying on a couch during the day & have been for a few years now, receiving little to no medical help except for the treatment of CFS/ME which is a joke. No doubt when the day comes, my autopsy will also show TBE/Lymes.
ReplyDeleteAnon 01:03 I am so sorry to hear the tragedy of losing your husband in this way. Sadly with Lyme disease all too many patients have a similar experience of mis diagnosis leading to very tragic circumstances and yes also death as in the case of the husband of a friend of mine.
ReplyDeleteIncidentally research shows links with Lyme Disease and some cancers, stroke and many other illnesses but sadly our Health Departments have their heads well and truly in the sand.
Anon 01:59 I have just e mailed you.
ReplyDeleteYour story is all too frequently told so I strongly advise you join Eurolyme and look at Lyme Disease Action website. You will learn that blood tests can miss upto 50% of cases and the short course of antibiotics does not always erradicate infection - I posted Jan/ Feb this year about the non human Primate monkey study that showed that in monkeys 1 months IV followed by 2 months Doxy was unable to erradicate all infection. Studies have found this in Mice, Dogs and now Monkeys but sadly medicine is very slow to move along and being held back by those with power and vested interests in denying Lyme Disease in it's chronic form.
Stand firm and do your homework and do not be put off by nay saying doctors who have never properly investigated the more than 16000 research papers on Lyme Disease - hardly need to be so many for an illness that is easily cured with a couple of weeks antibiotics.
One Consultant said to me that it is the biggest medical disgrace of all time.