Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son’s tick bite.
He said
“Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.”
Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.
Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. for more information click here
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Of the 5 doctors and 3 Rheumatologists I saw the biggest problem was that they did not listen to me describing my symptoms.
One Professor of Rheumatology who works at our top London Hospital examined me. He established that I had bursitis in my right hip although two years earlier my local Rheumatologist established I had bursitis in my left hip, infact there was little to choose between the pain in both hips throughout that two year period.
The Prof. also established I had problems with hips which he said was osteo arthritis they were very painful when he manipulating my legs. (since long term antibiotic treatment they are now completely recovered no pain no signs of arthritis or stiffness)
He examined my shoulders, ankles and knees which were also painful and said there were signs of arthritis.
I had been referred to him by my GP because I had arthritis in virtually every joint and muscle weakness in many muscles. I had been on steroids 20 months for Polymyalgia Rheumatica diagnosis but when given antibiotics for a chest infection my arthritis and muscle weakness significantly improved and led GP to suspect Lyme Disease. ( her computer confirmed times I had visited the surgery with bites, rashes, summer flu' and migrating arthralgias)
This Prof. was recommended to GP by the 'expert' at HPA as being someone with an interest in Lyme Disease.
He examined my wrists last and his comment to me was 'what have you done to sprain your wrist?'
I think at that point I realised I was wasting my time with him he clearly was not listening, I had said that I had pain and stiffness in virtually every joint many of which he had already confirmed so why when he got to my wrists did he question if I had damaged them somehow?
He said that the blood tests for Lyme being negative he was assured by the 'expert' at HPA meant I did not have Lyme Disease. ( This was so clearly a false premise as I had been on steroids for 20 months which suppress the immune response and that is what is measured with a Lyme Disease test the immune systems ability to produce antibodies. Since having access to the Internet the abundance of research available shows that these tests so relied upon by our doctors are missing at least 50% of cases.)
The Prof.'s diagnosis was Lyme Neurosis from reading too much on the internet about Lyme Disease. (Little did he know at that time I did not have access to the Internet and it was in fact my GP who suspected Lyme Disease. ) He wrote this to GP and said I had ME/CFS and should try antidepressants and CBT.
Thank goodness my GP had listened to my symptoms had seen my incapacity and many signs of inflammation and improvements and she continued to treat me following ILADS guidelines and most importantly I continued to improve in health.
Until the science which is still emerging in the field of tick borne illness is more widely disseminated amongst our doctors it is important to do our own research so we can best advocate for what treatments help us.
Showing posts with label rash. Show all posts
Showing posts with label rash. Show all posts
Monday, 6 December 2010
Wednesday, 10 November 2010
CLINICAL DIAGNOSIS - SAY MAKERS OF LYME DISEASE TEST KITS
Trinity Biotech make the test kits for Lyme Disease used here in the UK.
It is interesting to read their recently updated website here
Lyme disease is a multisystem disease caused by the spirochete Borrelia burgdorferi (1). The disease has been documented in Europe since early this century. It was documented in the United States during an epidemic in 1975 among children in Old Lyme Connecticut who demonstrated arthritic symptoms. Steere, et al. recognized the disease as a unique clinical entity (2,3). The symptoms of Lyme disease have been mistaken with many diseases including: juvenile rheumatoid arthritis, lupus erythematosis, multiple sclerosis, Bell’s palsy, rheumatic fever, Reiter's Syndrome, myocarditis and viral meningitis (4).
The spirochete is transmitted by ticks of the genus Ixodes from animal reservoirs such as deer, mice, dogs, horses and birds. The ticks are commonly found on vegetation in endemic regions especially in wooded areas common to the animal reservoir. The incidence of human infection coincides with the tick season from May through September (3,5).
Although the symptoms of Lyme Disease are varied and sometimes unclear, three distinct phases of the disease are recognized. Early manifestations include a single or multiple rash called erythema migrans (EM), a meningitis stage during the next weeks to months is often seen. Late manifestations are recognized to include arthritis or neurologic signs and symptoms. In asymptomatic or subclinical cases, symptoms of infection may not be evident until the later stages of disease (5).
Isolation of B. burgdorferi in culture is definitive evidence of active infection, but is not practical. Detection of specific antibodies is practical but an indirect marker of exposure. Patients produce IgM antibodies within a few weeks of the appearance of EM. Although only IgM antibodies may be detectable during the first month, IgG antibodies increase in most patients after approximately one month. Detectable levels of both IgG and IgM may persist for years (5,6).
B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8).
The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9).
***********************************************************
I don't think this could be put much clearer - negative tests can not be used to rule out the patient having Lyme Disease.
Why then are there so many doctors and consultants still telling patients here in the UK you don't have Lyme Disease your test result was negative?
Well I think the answer is that they are told this incorrect information from the 'expert' or certainly that was the case for me when I consulted a Rheumatologist who was taking an interest in Lyme Disease, he quoted this expert.
Thankfully for me I had a GP who had seen my amazing recovery on antibiotics, from being severely incapacitated with arthritis and muscle weakness and so continued to treat me on long term antibiotics despite the advice issued by our Health Protection Agency 'expert' who said she should stop giving me antibiotics. I continued to recover and can enjoy a normal life once more.
We need more doctors and consultants to be allowed to think for themselves and not be dictated to by a narrow definition which has insufficient basis to be used to restrict diagnosis and treatment of this emerging complex illness.
Whilst the science continues to emerge over this complex illness it is important to do our own research so that we can discuss with our doctors the best treatments for us, bearing in mind our doctors are often too busy to spend the time needed to read the abundant scientific research that shows that for some of us a short course of antibiotics is just not adequate.
It is interesting to read their recently updated website here
Lyme disease is a multisystem disease caused by the spirochete Borrelia burgdorferi (1). The disease has been documented in Europe since early this century. It was documented in the United States during an epidemic in 1975 among children in Old Lyme Connecticut who demonstrated arthritic symptoms. Steere, et al. recognized the disease as a unique clinical entity (2,3). The symptoms of Lyme disease have been mistaken with many diseases including: juvenile rheumatoid arthritis, lupus erythematosis, multiple sclerosis, Bell’s palsy, rheumatic fever, Reiter's Syndrome, myocarditis and viral meningitis (4).
The spirochete is transmitted by ticks of the genus Ixodes from animal reservoirs such as deer, mice, dogs, horses and birds. The ticks are commonly found on vegetation in endemic regions especially in wooded areas common to the animal reservoir. The incidence of human infection coincides with the tick season from May through September (3,5).
Although the symptoms of Lyme Disease are varied and sometimes unclear, three distinct phases of the disease are recognized. Early manifestations include a single or multiple rash called erythema migrans (EM), a meningitis stage during the next weeks to months is often seen. Late manifestations are recognized to include arthritis or neurologic signs and symptoms. In asymptomatic or subclinical cases, symptoms of infection may not be evident until the later stages of disease (5).
Isolation of B. burgdorferi in culture is definitive evidence of active infection, but is not practical. Detection of specific antibodies is practical but an indirect marker of exposure. Patients produce IgM antibodies within a few weeks of the appearance of EM. Although only IgM antibodies may be detectable during the first month, IgG antibodies increase in most patients after approximately one month. Detectable levels of both IgG and IgM may persist for years (5,6).
B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8).
The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9).
***********************************************************
I don't think this could be put much clearer - negative tests can not be used to rule out the patient having Lyme Disease.
Why then are there so many doctors and consultants still telling patients here in the UK you don't have Lyme Disease your test result was negative?
Well I think the answer is that they are told this incorrect information from the 'expert' or certainly that was the case for me when I consulted a Rheumatologist who was taking an interest in Lyme Disease, he quoted this expert.
Thankfully for me I had a GP who had seen my amazing recovery on antibiotics, from being severely incapacitated with arthritis and muscle weakness and so continued to treat me on long term antibiotics despite the advice issued by our Health Protection Agency 'expert' who said she should stop giving me antibiotics. I continued to recover and can enjoy a normal life once more.
We need more doctors and consultants to be allowed to think for themselves and not be dictated to by a narrow definition which has insufficient basis to be used to restrict diagnosis and treatment of this emerging complex illness.
Whilst the science continues to emerge over this complex illness it is important to do our own research so that we can discuss with our doctors the best treatments for us, bearing in mind our doctors are often too busy to spend the time needed to read the abundant scientific research that shows that for some of us a short course of antibiotics is just not adequate.
Monday, 9 August 2010
JONATHAN PEARCE CONTRACTED LYME DISEASE
BBC's Pearce Recovering From Lyme Disease
BBC commentator Jonathan Pearce contracted Lyme Disease during his time in South Africa for the World Cup. The veteran broadcaster broke the news on his Twitter account earlier this week ''Bit of bad news. Contracted lyme disease in South Africa, a tick borne paralisis. Now clearing up it seems but scary for a week or two.''There have been no further updates on this story by the media or from Pearce himself. Pearce covered 15 World Cup matches over the summer, including the 3rd place game between Germany and Uruguay.Read more: http://www.broadcasting.vitalfootball.co.uk/article.asp?a=7505199#ixzz0w822wyLX
Jonathan Pearce appears to have been lucky in that his Lyme Disease seems to have been diagnosed early in his illness when antibiotics are more effective in eradicating the infection.
Jonathan Pearce also appears to be lucky in that he no doubt will have been diagnosed either by a Bulls eye rash something that many doctors don't recognise as the hall mark of Lyme Disease and something that 40% of cases do not get, or serology which can miss 50% of cases or maybe lumber puncture which is only 17% likely to find the right spot where the infection is.
Lets hope he is also lucky in being treated long enough to eradicate the infection many treated on the two weeks low dose of antibiotics recommended in IDSA guidelines and followed by our Health Protection agency in UK find to their cost that their symptoms return gradually over the next months and years.
If this happens with Jonathan will he be told by his doctors that his remaining symptoms are all in his head or the aches and pains of daily life? or will he like many thousands of others find a Lyme literate medical doctor something particularly rare to find in the UK and dismissed by HPA who so vehemently follow IDSA restrictive and discredited guidelines.
However if Jonathan does some homework he will find that ILADS and Burrascano Guidelines recommend a 6-8 week course of antibiotics even at the Rash stage and their dosage is about twice as much as IDSA/HPA would advise.
I wonder how aware Jonathan is that Lyme is endemic in many places in the UK and can in fact be caught throughout the UK. The real problem is that patients are dismissed with many mis diagnosis and Lyme Disease is rarely considered as a differential diagnosis.
Jonathan Pearce says 'a tick borne paralysis' and 'scary for a week or two' what he doesn't know is that thousands of patients the World over suffer his scary symptoms not like I suspect he had as an Acute illness more easily diagnosed by our doctors but as a chronic insidious illness that creeps up slowly over the years but does indeed lead to years if not the rest of our lives with those scary symptoms depending on whether patients get a Lyme Disease diagnosis or not and if they do find a Lyme literate medical doctor who has treated sufficient numbers of patients to really understand the complexities of this dreadful disease.
Hopefully Jonathan will not repeat the experience of Rugby coach Mike Gregory. click here
or 'Karl McManus, died last Wednesday - three years after he was bitten by a tick she says carried Lyme disease, a bacterial infection which, if left untreated, can cause profound neurological damage' click here
BBC commentator Jonathan Pearce contracted Lyme Disease during his time in South Africa for the World Cup. The veteran broadcaster broke the news on his Twitter account earlier this week ''Bit of bad news. Contracted lyme disease in South Africa, a tick borne paralisis. Now clearing up it seems but scary for a week or two.''There have been no further updates on this story by the media or from Pearce himself. Pearce covered 15 World Cup matches over the summer, including the 3rd place game between Germany and Uruguay.Read more: http://www.broadcasting.vitalfootball.co.uk/article.asp?a=7505199#ixzz0w822wyLX
Jonathan Pearce appears to have been lucky in that his Lyme Disease seems to have been diagnosed early in his illness when antibiotics are more effective in eradicating the infection.
Jonathan Pearce also appears to be lucky in that he no doubt will have been diagnosed either by a Bulls eye rash something that many doctors don't recognise as the hall mark of Lyme Disease and something that 40% of cases do not get, or serology which can miss 50% of cases or maybe lumber puncture which is only 17% likely to find the right spot where the infection is.
Lets hope he is also lucky in being treated long enough to eradicate the infection many treated on the two weeks low dose of antibiotics recommended in IDSA guidelines and followed by our Health Protection agency in UK find to their cost that their symptoms return gradually over the next months and years.
If this happens with Jonathan will he be told by his doctors that his remaining symptoms are all in his head or the aches and pains of daily life? or will he like many thousands of others find a Lyme literate medical doctor something particularly rare to find in the UK and dismissed by HPA who so vehemently follow IDSA restrictive and discredited guidelines.
However if Jonathan does some homework he will find that ILADS and Burrascano Guidelines recommend a 6-8 week course of antibiotics even at the Rash stage and their dosage is about twice as much as IDSA/HPA would advise.
I wonder how aware Jonathan is that Lyme is endemic in many places in the UK and can in fact be caught throughout the UK. The real problem is that patients are dismissed with many mis diagnosis and Lyme Disease is rarely considered as a differential diagnosis.
Jonathan Pearce says 'a tick borne paralysis' and 'scary for a week or two' what he doesn't know is that thousands of patients the World over suffer his scary symptoms not like I suspect he had as an Acute illness more easily diagnosed by our doctors but as a chronic insidious illness that creeps up slowly over the years but does indeed lead to years if not the rest of our lives with those scary symptoms depending on whether patients get a Lyme Disease diagnosis or not and if they do find a Lyme literate medical doctor who has treated sufficient numbers of patients to really understand the complexities of this dreadful disease.
Hopefully Jonathan will not repeat the experience of Rugby coach Mike Gregory. click here
or 'Karl McManus, died last Wednesday - three years after he was bitten by a tick she says carried Lyme disease, a bacterial infection which, if left untreated, can cause profound neurological damage' click here
Thursday, 29 July 2010
CLINICAL JUDGMENT FOR MULTISYSTEMIC ILLNESS
The Need for Clinical Judgment in the
Diagnosis and Treatment of Lyme Disease
Elizabeth L. Maloney, M.D.
extract
The wide array of Lyme disease symptoms is consistent with Borrelia burgdorferi’s ability to infect multiple organ systems; nervous system involvement creates the potential for varied and atypical symptoms. Common symptoms include: EM rash, fever, fatigue, headache, neck pain, joint or muscle pain, paresthesias, memory impairment, weakness of facial muscles, mood disorders, neuropathic pain.
further extract
It is the multisystemic nature of the illness that provides physicians
with useful diagnostic information. In fact, with the exception of an
isolated EM rash or swollen joint, patients with symptoms restricted to
a single system are unlikely to have Lyme disease. Recognizing the
potential for disease is different from “seeing it everywhere.” Failure
to recognize Lyme disease may lead to serious harm, as antibiotics are
delayed and the infection is unchecked.
The nonspecific nature of many Lyme disease symptoms leads
some to suggest that such symptoms hold no diagnostic value. Lyme
disease is like many other illnesses that present with nonspecific and
often subtle symptoms—symptoms that may go unrecognized by
physicians. Examples include hypothyroidism, ovarian cancer, and
acute sub endocardial myocardial infarction. What gives the
individual symptoms of Lyme disease value is their occurrence in
clusters; a single symptom means little but four or five may, for all
practical purposes, make the case. Just as abdominal bloating, urinary
urgency, and pelvic pain raise “red flags” for gynecologists, the
combination of fatigue, paresthesias, arthralgias, and memory
complaints presenting in a single patient commands the attention of
physicians aware of these potential Lyme disease symptoms.
Steere et al. noted that patients with early Lyme disease who
lacked an EM rash presented with an average of four or more
symptoms. Fever, chills, malaise, and myalgia, all nonspecific, were
present in 46%-71% of the patients with definite Lyme disease alone.
In this group, it was the clustering of nonspecific symptoms in the
appropriate setting that led to the correct diagnosis of Lyme disease.
Logigian et al. also noted the nonspecific nature of identi-fying
symptoms: “The most common form of chronic central nervous
system involvement in our patients was subacute encephalopathy
affecting memory, mood, and sleep, sometimes with subtle
disturbances in language.
Diagnosis of this condition may be difficult
because the typical symptoms are nonspecific” [emphasis added].
To provide a clinical level of diagnostic sensitivity higher than two tier
testing, physicians need to recognize the symptom clusters and
maintain a high index of suspicion for Lyme disease.
To read the full article click here
Diagnosis and Treatment of Lyme Disease
Elizabeth L. Maloney, M.D.
extract
The wide array of Lyme disease symptoms is consistent with Borrelia burgdorferi’s ability to infect multiple organ systems; nervous system involvement creates the potential for varied and atypical symptoms. Common symptoms include: EM rash, fever, fatigue, headache, neck pain, joint or muscle pain, paresthesias, memory impairment, weakness of facial muscles, mood disorders, neuropathic pain.
further extract
It is the multisystemic nature of the illness that provides physicians
with useful diagnostic information. In fact, with the exception of an
isolated EM rash or swollen joint, patients with symptoms restricted to
a single system are unlikely to have Lyme disease. Recognizing the
potential for disease is different from “seeing it everywhere.” Failure
to recognize Lyme disease may lead to serious harm, as antibiotics are
delayed and the infection is unchecked.
The nonspecific nature of many Lyme disease symptoms leads
some to suggest that such symptoms hold no diagnostic value. Lyme
disease is like many other illnesses that present with nonspecific and
often subtle symptoms—symptoms that may go unrecognized by
physicians. Examples include hypothyroidism, ovarian cancer, and
acute sub endocardial myocardial infarction. What gives the
individual symptoms of Lyme disease value is their occurrence in
clusters; a single symptom means little but four or five may, for all
practical purposes, make the case. Just as abdominal bloating, urinary
urgency, and pelvic pain raise “red flags” for gynecologists, the
combination of fatigue, paresthesias, arthralgias, and memory
complaints presenting in a single patient commands the attention of
physicians aware of these potential Lyme disease symptoms.
Steere et al. noted that patients with early Lyme disease who
lacked an EM rash presented with an average of four or more
symptoms. Fever, chills, malaise, and myalgia, all nonspecific, were
present in 46%-71% of the patients with definite Lyme disease alone.
In this group, it was the clustering of nonspecific symptoms in the
appropriate setting that led to the correct diagnosis of Lyme disease.
Logigian et al. also noted the nonspecific nature of identi-fying
symptoms: “The most common form of chronic central nervous
system involvement in our patients was subacute encephalopathy
affecting memory, mood, and sleep, sometimes with subtle
disturbances in language.
Diagnosis of this condition may be difficult
because the typical symptoms are nonspecific” [emphasis added].
To provide a clinical level of diagnostic sensitivity higher than two tier
testing, physicians need to recognize the symptom clusters and
maintain a high index of suspicion for Lyme disease.
To read the full article click here
Monday, 26 July 2010
A LYME WARRIOR
Dr. Joe Jemsek “Speaks the Truth” Speech
Dr. Joe Jemsek (www.jemsekspecialty.com) discusses the controversy surrounding Lyme disease and what action needs to be taken to provide patients with better care.
Lyme Disease is more generally associated with Arthritis by the general public, that is if they think about it at all. In fact my main symptoms were arthritis and muscle weakness but as my illness progressed I developed various Peripheral Neuropathies. It is interesting to read what Dr Jemsek has to say about the Disease and the Patient.
THE DISEASE
A tick bite can expose a person to a variety of bacteria and other microorganisms that may make one sick. This can occur after a single bite or through multiple tick bites. In this overview, we will focus on the particular bacteria called Borrelia Burgdorferi (Bb) that is known to cause Lyme disease and is acquired from a tick bite. If antibiotics are not taken or are inappropriately administered soon after a bite from a Bb-infected tick, the patient is at higher risk for illness, which may occur suddenly or surface at a later time.
Finding the attached tick is difficult because the tick that carries this bacterium is very small and tick bites may occur where they are not easily seen. Often times, the tell-tale rash that can result from a tick bit, called erythema migrams, does not develop. Hence, a patient may not know they were bitten by an infected tick. They may soon begin to feel symptoms such as fatigue, muscle pain and spasms, sensory aversion, gut and bladder problems, bizarre neurological symptoms and memory loss. It is not unusual for cognitive difficulties to progress to the point that patients experience the inability to find their way home from everyday places, such as the grocery store and post office.
THE PATIENTS
Most patients that come to the Jemsek Specialty Clinic have seen 5 to 15 doctors for the symptoms listed above. They have seen neurologists, psychiatrists, rheumatologists, cardiologists, gastroenterologists, and internal medicine specialists. They have often been treated for one of more of their individual symptoms without knowing the cause of those symptoms. When treatment for their symptoms is stopped, the symptoms typically re-emerge. This is not unusual if one stops taking high blood pressure medicine, the blood pressure usually rises again.
On the matter of the IDSA review
http://www.jemsekspecialty.com/shownews.php?id=30
IDSA Review Panel Results Called Highly Suspect
"There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well."
Although the above video was of 2009 Into The Light Gala I had not started this blog then and it is something I wanted to post about. I remember Dr Jemsek saying that of the top 20 chronic illnesses in the USA they only know the cause of two Helicobacter Pylori a bacterial infection causing stomach ulcers and HIV a viral infection.
How many patients went under the knife for a stomach ulcer unnecessarily and how many AIDS patients died before HIV was accepted? Already Lyme disease is a greater epidemic in the USA than HIV.
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