When Google is better doctor than you
“Doctors and top specialists in the Los Angeles area were unable to find a cause for the girl’s pain, and one recommended that she see a psychiatrist”
It was seven months later that the teen´s mother hook up through a chat room with a person that gave her the idea of a clinical condition with symptoms just like her daughter had; she followed links, a YouTube video and later made contact with the Mayo clinic which confirmed the diagnosis.
This child did not have Lyme Disease but the sentiments of the doctor writing this article are very pertinent to patients suffering from Lyme disease. read the whole article here
here was my response
Waw! What an excellent post.
'But in my opinion, the saddest and most important issue here (the big elephant in the room) is the loss of empathy (term recently and nicely discussed/blogged by Ajengmd ) and the underestimation by we, the doctors, of the empowered patient.'
Can we clone you for treating Lyme Disease patients?
Most doctors in the UK are not aware of the controversy that surrounds the diagnosis and treatment of Lyme Disease. Our HPA follow the restrictive and discredited 2006 IDSA Lyme Disease Guidelines. These guidelines were recently reviewed following a legal challenge. The guidelines were more opinion based than evidence based. The review once again was skewed. For instance it was found that the correct voting procedure that had been legally agreed to, was not followed. In the case of Blood tests 50/50 of the panel members thought the guidelines should be changed ie there was not sufficient information to support the tests being 100%. Indeed there is considerable research which shows the tests can miss upto 50% of cases. The final decision then went on to disregarded that part of the guidelines.
The final decision ignored the many thousands of research papers that supported ILADS doctors views ( some details found on www.ilads.org )rather than IDSA guidelines, because they were not Randomised Placebo Controlled Trails. Madness! Why? The only 4 Randomised Placebo Controlled Trials were in fact severely criticised by the ILADS doctors. The longest trial 6 months, during which time symptoms improved but deteriorated once antibiotics were stopped. Hardly a surprise to many of us Lyme patients. It took much longer than 6 months antibiotics to restore my health.
Borrelia, Lyme Disease is a spirochete like syphilis but far more complex. It is on a par in complexity with TB and Leprosy. Whoever would treat any of these illnesses with just a couple of weeks antibiotics and then dismiss the patient saying their remaining symptoms are the 'aches and pains of daily life'.
Patients go from doctor to doctor with a multi systemic illness before turning to the internet and when they find a sympathetic doctor and get appropriate treatment on long term antibiotics, their symptoms of many years improve and go away.
I was lucky it was my GP who suspected Lyme Disease I had not realised you could get it in the UK. However it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. It was a chance course of antibiotics which significantly improved my symptoms (arthritis and muscle weakness) that led GP to suspect Lyme Disease (by then other patients had presented at surgery with tick bite Bulls eye rashes and positive serology) I had in fact attended surgery at time of bites Bulls eye rashes and summer flu' all red flags for Lyme Disease. Following ILADS guidelines on long term antibiotics I have my health and my life back.
Currently IDSA and HPA are cherry picking science to suit their OPINIONS denying patients treatment that can and does help them.
My GP was advised by the 'expert' at the HPA to stop giving antibiotics thankfully GP ignored that advice and continued to treat and I continued to improve. She treated the patient and not the test result because she could see my significant improvements on antibiotics and deterioration off them.
Chat Line Eurolyme has 2293 members mainly from the UK, all with a similar experience of seeing doctor after doctor before realising that they may be struggling with Lyme Disease and/or the many co infections. They are dismissed by their doctors who haven't the time to do the research themselves and rely on HPA limited information.
There are an increasing number of doctors now in the UK who realise there is more to Lyme Disease than HPA would have us believe. Some of these doctors have personal experience of Lyme Disease, either themselves or a family member and have travelled to USA to see specialist Lyme Doctors in order to get appropriate and adequate treatment.
There are just a handful of doctors here in the UK who assess, diagnose and treat Lyme Disease patients, privately, initially doubted by their colleagues they are now finding more and more doctors realising there is more to Lyme Disease than IDSA/HPA would have us believe, as their patients improve after years of declining ill health.
Lyme Disease is an emerging disease all the science has not yet been written and certainly not enough is known to restrict treatment options.
If Lyme Disease was so easy to cure on a short course of antibiotics as IDSA/HPA would have us believe-
Why are there more than 19000 research articles written?
Why would there be any need to spend thousands of dollars and many years trying, unsuccessfully, to produce a vaccine?
Why would the IDSA Guideline authors be paid by Insurance companies to deny thousands of patients long term antibiotics?
Why would so many thousands of patients find that long term antibiotics were improving their health and quality of life?
Once doctors open their minds they then go on to consider Lyme as a differential diagnosis with other patients and as is happening with my surgery finding more and more patients suffering from Lyme disease.
Below is a link to a psychiatrist's blog about her husband's experience suffering with Lyme disease and the denial that makes life so un necessarily difficult. try here
For more information see UK charity website at http://www.lymediseaseaction.org.uk/
Two very typical examples of the way Consultants treat Lyme Disease patients ( permission to re post given)
'I was sent to see the head of the local NHS hospital's neurology department (because of fatigue, nightmares, flashing lights, headaches, photophobia, hearing loss, nystagmus, tingling and numbness, blah blah. Nearly all of which had greatly subsided in the three months between ending up in A&E overnight - with everyone initially suspecting I had a sub-arachnoid hemorrhage - and getting this appointment).He asked if it was okay if two students attended the consultation, I said sure, fine.He took a full and thorough history. Then did the usual neurological examination. Yes I can stand on one leg with my eyes shut. Yes I flinch when you jab me in the soles of the feet with a stick.Then he pronounced his verdict, which he directed more at the students than me:
"This patient clearly has many symptoms consistent with Chronic Fatigue Syndrome... have you heard of that? Now, there are some that believe that chronic fatigue syndrome has an unknown infectious cause... but after many years of studying this condition, I have concluded that these things are all in the patient's head."SERIOUSLY! THAT'S WHAT THE HEAD OF NEUROLOGY SAID TO TWO MEDICAL STUDENTS!'
The above was posted today on Eurolyme and is a typical response many Lyme Disease patients get from those who should know better if they only took some time to do some research.Research shows that about 1/3 of patients with ME/CFS actually do have Lyme Disease.
Recent research has found XMRV retrovirus in between 75 and 98% of patients with ME/CFS.
A small number of patients with Lyme Disease are now being found to have XMRV.
The bottom line is no one has got to the bottom of either of these illnesses and anyone thinking they have is an arrogant fool and not using the brains they needed to get their qualifications in the first place.
My daughter who is 27yrs old and has been has been ill with LD since she was 15yrs old has been over the years treated like this countless times. After 2 brain operations for trigeminal neuralgia both unsuccessful ( LD being the culprit ) the nuerosurgeon finally admitted that my constant gut feeling that Lyme was the culprit would "explain an awful lot!!"
So she had 2 potentially life threatening ops before he would finally listen.
The worst treatment by far though was the neuro-pain specialist who, after looking after my daughter for 4years on learning that we had a positive private Lyme diagnosis from Germany said he had done all he could and after many terribly hurtful comments actually got up and showed us the door(still can't believe it happened I was speechless!)
People can be heartless but Thank God there are still many good caring people out there and I truly believe in "what goes around comes around"
So if you suffer a multiple of symptoms including any of these brain fog, neurological, arthritis, psychosis, fatigue and have been diagnosed with Fibromyalgia, ME/CFS, arthritis, muscle weakness, musculo skeletal disease, Polymyalgia Rheumatica, Multiple Sclerosis, Motor Neurons, Parkinson's then do your research.