Lyme Disease treatment on the NHS has been a very controversial area for those patients who fail the usual couple of weeks antibiotics usually given by NHS doctors following the HPA guidance. That is when they are treated in the early stages of the illness, because so many of us missed that window of opportunity despite seeking medical attention for tick bites, bulls eye rashes, summer flu' and migrating arthralgias.
Lyme Disease Action charity has been working with the James Lind Alliance reviewing the available research on diagnosis and treatment of Lyme disease looking for areas of uncertainties.
The James Lind Alliance is funded by the National Institute for Health.
Links to the Lyme disease Action website here
Links to more than 39 uncertainties here
Doctors and patients or their carers can vote on the top ten priorities for research before the 9th December 2012 here
Hopefully this research will be brought to the attention of doctors who frequently fail to even recognise the certainties of Lyme Disease such as the EM Rash -
'Does EM provide an ‘accurate’ clinical diagnosis of LD?
Yes it does. See Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme
borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical
Microbiology and Infection. 2011 Jan;17(1):69–79.
In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'
I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data.
By identifying uncertainties in the research hopefully in time research will be directed into these areas that need more detailed investigation.
Showing posts with label bulls eye rashes. Show all posts
Showing posts with label bulls eye rashes. Show all posts
Wednesday, 28 November 2012
Tuesday, 5 April 2011
SEEK AND YE SHALL FIND
RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA
Samuel Shor1, MD, FACP Principle Investigator:1Samuel Shor, MD, FACPAssociate Clinical ProfessorGeorge Washington University Health Care SciencesInternal Medicine of Northern Virginia1860 Town Center Drive #230Reston, Virginia 20190Phone 703 709-1119 Fax 703 709-7496samshormd@gmail.com ABSTRACT
Background Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes. Methods
An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS. Results
Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease.
Conclusions
A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes.
----------------------------------------------
I have been remiss in posting recently ( busy enjoying life ) and also finding lots of interesting info on Lyme Disease and ME/CFS through Facebook but I had to post the above excellent research.
The above study concentrated on a known endemic area but here in the UK there is not so much research done on Lyme Disease areas to see where it is endemic.
My own diagnosis was part of a domino affect.
A nurse training at the Royal Surrey hospital had a patient admitted, on the ward with a tick bite and overheard talk about Lyme Disease.
Never having heard of Lyme Disease she looked it up on the Internet.
Only a fortnight later her new found knowledge proved useful when her husband had a tick attached whilst sitting in his garden. The husband attended the local surgery and Lyme Disease was dismissed as unlikely as the patient had not been infected in a known Lyme endemic area.
However a few days later the typical bulls eye rash appeared (lucky him as 40% of cases often don't get a rash). Still his GP and Dermatologist shook their heads and dismissed Lyme Disease, however the wife had by then pursuaded the GP to prescribe antibiotics and just as well as the NHS blood tests came back positive for Lyme.
That was the first known case at my surgery, later other cases presented in the early stages of tick bite and bulls eye rashes and eventually led to my GP suspecting I had Lyme when a chance course of antibiotics significantly improved my chronic arthritis and muscle weakness (My story is in the right hand column).
Since, there have been several patients present at my surgery and several other surgeries in the Guildford locality- seems once doctors start to look they find.
An area is only endemic when sufficient research has been done to establish that it is endemic - if the research is not done that does not mean there is no Lyme Disease in the area.
Samuel Shor1, MD, FACP Principle Investigator:1Samuel Shor, MD, FACPAssociate Clinical ProfessorGeorge Washington University Health Care SciencesInternal Medicine of Northern Virginia1860 Town Center Drive #230Reston, Virginia 20190Phone 703 709-1119 Fax 703 709-7496samshormd@gmail.com ABSTRACT
Background Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes. Methods
An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS. Results
Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease.
Conclusions
A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes.
----------------------------------------------
I have been remiss in posting recently ( busy enjoying life ) and also finding lots of interesting info on Lyme Disease and ME/CFS through Facebook but I had to post the above excellent research.
The above study concentrated on a known endemic area but here in the UK there is not so much research done on Lyme Disease areas to see where it is endemic.
My own diagnosis was part of a domino affect.
A nurse training at the Royal Surrey hospital had a patient admitted, on the ward with a tick bite and overheard talk about Lyme Disease.
Never having heard of Lyme Disease she looked it up on the Internet.
Only a fortnight later her new found knowledge proved useful when her husband had a tick attached whilst sitting in his garden. The husband attended the local surgery and Lyme Disease was dismissed as unlikely as the patient had not been infected in a known Lyme endemic area.
However a few days later the typical bulls eye rash appeared (lucky him as 40% of cases often don't get a rash). Still his GP and Dermatologist shook their heads and dismissed Lyme Disease, however the wife had by then pursuaded the GP to prescribe antibiotics and just as well as the NHS blood tests came back positive for Lyme.
That was the first known case at my surgery, later other cases presented in the early stages of tick bite and bulls eye rashes and eventually led to my GP suspecting I had Lyme when a chance course of antibiotics significantly improved my chronic arthritis and muscle weakness (My story is in the right hand column).
Since, there have been several patients present at my surgery and several other surgeries in the Guildford locality- seems once doctors start to look they find.
An area is only endemic when sufficient research has been done to establish that it is endemic - if the research is not done that does not mean there is no Lyme Disease in the area.
Wednesday, 1 December 2010
OVER RELIANCE ON TEST RESULTS! WE NEED CLINICAL DIAGNOSIS
A recent Freedom of Information request to the Health Protection Agency on the number of samples tested for Lyme Disease resulted in the following:-
In 2009/10, there were 14,093 samples submitted and the number of positives that year was 867.
That is 6%.
The above if analysed closely is rather shocking.
The figures relate to samples tested in England and Wales because Scotland having a separate HPA keep separate figures. An earlier post about the figures is here
These above samples relate to the second of a two tier testing protocol.
So in general all these 14,093 samples from patients will have been sent by their doctors because they are suspected of having Lyme Disease.
In essence doctors consider Lyme Disease to be so rare in the UK because that is what they are taught at Med school.
The experience of many patients is that doctors are reluctant to consider Lyme Disease even when patients present with a Bulls Eye rash, the Hall Mark of Lyme Disease.
If in fact a doctor considers the possibility of Lyme Disease the initial test is the Elisa, which by many doctors experienced in treating Lyme Disease is considered next to worthless because of it's false negatives and false positives.
However if a patient gets a positive Elisa then eventually, if they are lucky and their sample does not get lost( which seems to happen not infrequently) their samples are forwarded to the Lyme reference unit at Southampton for the final test the Western blot, of which the above figures relate to.
The HPA constantly say that the Western Blot is the best available test but what they fail to say is that there is a considerable body of research which shows the problems over the Western blots which can in fact miss up to 50% of cases ( Steven Phillips presentation to IDSA review panel is a useful reference for this where he presents 25 studies on seronegativity and persistent infection here and here as well as other presentations from ILADS website here ).
Even the makers of the test kits Trinity Biotech say
"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). "
This information is not being relaid back to our doctors.
So what of those 14093 less 867 = 13226 patients?
Are they still struggling with symptoms which have now become chronic?
Have they like me and many others been dismissed as having Fibromyalgia, ME/CFS, an imaginary all in your head diagnosis, or worse some neurological or Psychiatric disorder and treated on palliative drugs when perhaps antimicrobial therapy would have been more appropriate?
What of the many more patients who failed the initial Elisa and never got to have a Western blot?
What of the many patients who never suspected their illness could be the result of a tickbite or whose doctors never suspected Lyme Disease?
What of the many other tick borne illnesses that are rarely ever tested for here in the UK?
Will our UK 'expert' open her mind and start to redress the problems after listening to the presentations at the recent Institute of Medicine-
A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here
her presentation and links to the conference can be found here
or will doctors remain ill informed and patients remain without adequate care?
Until better tests can be found patients need better clinical diagnosis.
In 2009/10, there were 14,093 samples submitted and the number of positives that year was 867.
That is 6%.
The above if analysed closely is rather shocking.
The figures relate to samples tested in England and Wales because Scotland having a separate HPA keep separate figures. An earlier post about the figures is here
These above samples relate to the second of a two tier testing protocol.
So in general all these 14,093 samples from patients will have been sent by their doctors because they are suspected of having Lyme Disease.
In essence doctors consider Lyme Disease to be so rare in the UK because that is what they are taught at Med school.
The experience of many patients is that doctors are reluctant to consider Lyme Disease even when patients present with a Bulls Eye rash, the Hall Mark of Lyme Disease.
If in fact a doctor considers the possibility of Lyme Disease the initial test is the Elisa, which by many doctors experienced in treating Lyme Disease is considered next to worthless because of it's false negatives and false positives.
However if a patient gets a positive Elisa then eventually, if they are lucky and their sample does not get lost( which seems to happen not infrequently) their samples are forwarded to the Lyme reference unit at Southampton for the final test the Western blot, of which the above figures relate to.
The HPA constantly say that the Western Blot is the best available test but what they fail to say is that there is a considerable body of research which shows the problems over the Western blots which can in fact miss up to 50% of cases ( Steven Phillips presentation to IDSA review panel is a useful reference for this where he presents 25 studies on seronegativity and persistent infection here and here as well as other presentations from ILADS website here ).
Even the makers of the test kits Trinity Biotech say
"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). "
This information is not being relaid back to our doctors.
So what of those 14093 less 867 = 13226 patients?
Are they still struggling with symptoms which have now become chronic?
Have they like me and many others been dismissed as having Fibromyalgia, ME/CFS, an imaginary all in your head diagnosis, or worse some neurological or Psychiatric disorder and treated on palliative drugs when perhaps antimicrobial therapy would have been more appropriate?
What of the many more patients who failed the initial Elisa and never got to have a Western blot?
What of the many patients who never suspected their illness could be the result of a tickbite or whose doctors never suspected Lyme Disease?
What of the many other tick borne illnesses that are rarely ever tested for here in the UK?
Will our UK 'expert' open her mind and start to redress the problems after listening to the presentations at the recent Institute of Medicine-
A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes here
her presentation and links to the conference can be found here
or will doctors remain ill informed and patients remain without adequate care?
Until better tests can be found patients need better clinical diagnosis.
Tuesday, 30 November 2010
TIME TO EDUCATE OUR NHS CONSULTANTS
I don't generally post personal stories of patients with Lyme disease but this one particularly touched me.
With permission I am only going to post a small section of it but do go to the full details here
Apart from highlighting patients' struggle with the disease and getting a diagnosis for their multi system problems it so highlights the crass comments our 'esteemed' medical professionals come out with, it is time they were taken to task over their behaviour and held to account for their comments to patients when clearly they are not informed of the complexities of Tick borne illness. Lyme Disease and the many co infections that can also affect us.
***************************************************************************** the ----establishment had so badly let me down and basically left me for dead at 36 years old !!
I went to London to the Infectious Disease clinic and the journey itself was hard as I am so poorly.
We were seen and told from the offset that, "we were there to listen to his opinion and that we would not be discussing Lyme until we had heard what he had to say" and i felt like a naughty schoolgirl that had been pulled up in front of the headmaster and was really tired of being treated so awfully when I was sick .
He asked about where I had traveled to tropically and then in Europe and then in the UK.... I reeled of the list of many places as I had travelled to all of these in my youth through bar work.
He then said "well you haven't been anywhere that is tick endemic and so its not Lyme" ..I, this time, had no patience to argue ,as the last time had taught me I was banging my head up a brick wall so I just sat there and silently disagreed with him in my head.
So he preceded to examine me which was very different to the previous 20 or so examinations I'd had by other doctors...and consisted of my lymph glands down my body and my spleen....he had said he would check my eyes as I was wearing the sunglasses but after he had done his tests he told me to go back and sit down and did not again look at toenails,rash or the eyes .
My husband then played him the video footage of me and my attack ...he watched about 10 seconds of it and said" that's enough "and then showed him the positive test results and he asked ..".who done these..."my husband replied "Igenex" and he said "well i can get a positive result for any test I want if I send it to the right place "and then told me that the "Americans are all mental and blame every symptom they have on Lyme" ....he said "don't get fixated with Lyme "...
to which I replied "I'm not fixated ..its just I have every symptom ..even definitive ones of Lyme ..positive test results that are non biased .. and the most important thing is ...if its not then what is it ??..
because I have seen nearly 20 doctors now ...who either tell me they don't know.. or we can tell you what its not ...or its a headache.... or a stiff neck ... or I may never get a diagnosis for this...or the last doctor who had the cheek to tell me there was NOTHING wrong with me...or its all in your head ....so believe me, I'm not fixated, I just haven't even been given anything else that it realistically could be ...and the fact that this is capable of evading normal routine tests, which is what's happened with me is surely proof enough to give antibiotic treatment a go
""He then said that, as this is an infectious disease clinic then he was going to run 3 tests of diseases that are of African nature..... and although the timing is out as to when I should have got ill with these after my return from Africa..... and the chances of me having them are next to none... he needed to rule them out anyway ....
to which I agreed ,but wondered why this wasn't checked for in the hospital on my admission on that first night ..as they were made fully aware of the fact we had not long returned from a tropical country and they did tell my husband that all possibilities had been checked for ...
Then we had the punchline delivered to us..in a very sinister way indeed ... considering he had just told me that if he wanted to ,then he could get a positive result for any test if he sent it to the right place.
..one of the tests that he was running was for an African borne disease that's VERY ,VERY RARE.. but the only treatment for it is to pump arsenic into your blood ..which results in 3 out of 5 death rate anyway...
I couldn't believe it ...one of the possible options that he'd managed to come up with rather than even acknowledging there is even a slight chance that it might be Lyme was of a rare disease that you had hardly any chance of surviving from the treatment..
.and it had sounded more like a threat ...
and I wondered why he had no worries about putting arsenic into me but I was having such a tough time getting antibiotics ..
I had also, before I'd found Lyme gone through, like I said every disease going ..and had studied African diseases especially hard, as we had spent a lot of time in Africa in the last two years and the symptoms and timing didn't match any of the diseases. .
So I'd agreed to his tests (or death sentence )that he had given me... and then I continued talking about Lyme .
This is when I believe ...he used the sentence that it had taken the doctors all these months to come up with ...of how to get around this situation, without actually telling me they would not treat me long term.
He said I am going to put you on a course of doxycycline for 3 weeks..if you get better then it was Lyme and you are cured...if not then it wasn't Lyme.
Here's how this interprets ...3 weeks course of doxycycline does treat and cure Lyme disease if caught in the early stages ..ie after the bite of an infected tick ..or the trademark rash being present ...after that if left untreated it grows in your body and will eventually turn into stage 2 which is harder to treat... and if still not detected it will go to stage 3 ...when it crosses the blood borne barrier and enters the brain and internal organs and this is where I am at and is extremely difficult to treat
and the NHS are not willing to invest the time or money to see if long term IV antibiotics make a difference...even though it has been proved by real people suffering with the disease at late stage... who have had to raise money and sell there homes .beg and borrow to find theirself a LLMD (Lyme Literate Medical Doctor) who specialises in the treatment of Lyme and its co infections and understands the complexity of the disease and of the treatment plan ,for life .
This is the aim of this appeal... I need to find myself a LLMD who will treat me and this will be outside the NHS and possibly outside the UK ...
Thankyou for reading my story ..please educate yourself and your family and friends on Lyme....... because if I can stop this happening to someone else it will do some good ...please if you are on facebook join the group that was my daughters idea and my husband set up ...called Would you pay a £1 to help save my mummy's life?..pass it on to your friends and ask them to pass it on and so on ...the more people that join ..the more awareness there is and it also gives my little girl some hope and makes us not feel not so totally alone in this situation http://www.facebook.com/profile.php?id=1109650270&ref=search#!/group.php?gid=134675306560444&ref=mf thankyou so much if you would like to donate click on the link below or if you would like to send a cheque ..please make payable to ...The Sonia Smith Appeal Fund 29 St Johns Rd
Bletchley
Milton Keynes
MK3 5DU
England
or for further queries contact soniasmithappeal@aol.com
****************************************************************
Initially Sonia was admitted to hospital with a suspected Brain Tumour or stroke but when tests showed nothing she was dismissed with 'It's all in your head' despite symptoms of paralysis, Bells Palsy, verbal stuttering and difficulties speaking, light and sound sensitivity to mention just a few of her symptoms.
As most of us find with Lyme Disease here in the UK like elsewhere in the World getting diagnosis even with positive Igenex tests is no guarantee that NHS will treat with antibiotics. Quite remarkable that this ID specialist would consider IV arsenic for some rare African Disease and yet simple antibiotics even oral antibiotics have significantly improved the lives of many patients with a clinical diagnosis of Lyme Disease let alone a serological diagnosis.
All these consultants in denial should listen to the recent presentations at the Institute of Medicine Workshop showing how complex all these tick borne diseases are to test for let alone to treat. Click here
With permission I am only going to post a small section of it but do go to the full details here
Apart from highlighting patients' struggle with the disease and getting a diagnosis for their multi system problems it so highlights the crass comments our 'esteemed' medical professionals come out with, it is time they were taken to task over their behaviour and held to account for their comments to patients when clearly they are not informed of the complexities of Tick borne illness. Lyme Disease and the many co infections that can also affect us.
***************************************************************************** the ----establishment had so badly let me down and basically left me for dead at 36 years old !!
I went to London to the Infectious Disease clinic and the journey itself was hard as I am so poorly.
We were seen and told from the offset that, "we were there to listen to his opinion and that we would not be discussing Lyme until we had heard what he had to say" and i felt like a naughty schoolgirl that had been pulled up in front of the headmaster and was really tired of being treated so awfully when I was sick .
He asked about where I had traveled to tropically and then in Europe and then in the UK.... I reeled of the list of many places as I had travelled to all of these in my youth through bar work.
He then said "well you haven't been anywhere that is tick endemic and so its not Lyme" ..I, this time, had no patience to argue ,as the last time had taught me I was banging my head up a brick wall so I just sat there and silently disagreed with him in my head.
So he preceded to examine me which was very different to the previous 20 or so examinations I'd had by other doctors...and consisted of my lymph glands down my body and my spleen....he had said he would check my eyes as I was wearing the sunglasses but after he had done his tests he told me to go back and sit down and did not again look at toenails,rash or the eyes .
My husband then played him the video footage of me and my attack ...he watched about 10 seconds of it and said" that's enough "and then showed him the positive test results and he asked ..".who done these..."my husband replied "Igenex" and he said "well i can get a positive result for any test I want if I send it to the right place "and then told me that the "Americans are all mental and blame every symptom they have on Lyme" ....he said "don't get fixated with Lyme "...
to which I replied "I'm not fixated ..its just I have every symptom ..even definitive ones of Lyme ..positive test results that are non biased .. and the most important thing is ...if its not then what is it ??..
because I have seen nearly 20 doctors now ...who either tell me they don't know.. or we can tell you what its not ...or its a headache.... or a stiff neck ... or I may never get a diagnosis for this...or the last doctor who had the cheek to tell me there was NOTHING wrong with me...or its all in your head ....so believe me, I'm not fixated, I just haven't even been given anything else that it realistically could be ...and the fact that this is capable of evading normal routine tests, which is what's happened with me is surely proof enough to give antibiotic treatment a go
""He then said that, as this is an infectious disease clinic then he was going to run 3 tests of diseases that are of African nature..... and although the timing is out as to when I should have got ill with these after my return from Africa..... and the chances of me having them are next to none... he needed to rule them out anyway ....
to which I agreed ,but wondered why this wasn't checked for in the hospital on my admission on that first night ..as they were made fully aware of the fact we had not long returned from a tropical country and they did tell my husband that all possibilities had been checked for ...
Then we had the punchline delivered to us..in a very sinister way indeed ... considering he had just told me that if he wanted to ,then he could get a positive result for any test if he sent it to the right place.
..one of the tests that he was running was for an African borne disease that's VERY ,VERY RARE.. but the only treatment for it is to pump arsenic into your blood ..which results in 3 out of 5 death rate anyway...
I couldn't believe it ...one of the possible options that he'd managed to come up with rather than even acknowledging there is even a slight chance that it might be Lyme was of a rare disease that you had hardly any chance of surviving from the treatment..
.and it had sounded more like a threat ...
and I wondered why he had no worries about putting arsenic into me but I was having such a tough time getting antibiotics ..
I had also, before I'd found Lyme gone through, like I said every disease going ..and had studied African diseases especially hard, as we had spent a lot of time in Africa in the last two years and the symptoms and timing didn't match any of the diseases. .
So I'd agreed to his tests (or death sentence )that he had given me... and then I continued talking about Lyme .
This is when I believe ...he used the sentence that it had taken the doctors all these months to come up with ...of how to get around this situation, without actually telling me they would not treat me long term.
He said I am going to put you on a course of doxycycline for 3 weeks..if you get better then it was Lyme and you are cured...if not then it wasn't Lyme.
Here's how this interprets ...3 weeks course of doxycycline does treat and cure Lyme disease if caught in the early stages ..ie after the bite of an infected tick ..or the trademark rash being present ...after that if left untreated it grows in your body and will eventually turn into stage 2 which is harder to treat... and if still not detected it will go to stage 3 ...when it crosses the blood borne barrier and enters the brain and internal organs and this is where I am at and is extremely difficult to treat
and the NHS are not willing to invest the time or money to see if long term IV antibiotics make a difference...even though it has been proved by real people suffering with the disease at late stage... who have had to raise money and sell there homes .beg and borrow to find theirself a LLMD (Lyme Literate Medical Doctor) who specialises in the treatment of Lyme and its co infections and understands the complexity of the disease and of the treatment plan ,for life .
This is the aim of this appeal... I need to find myself a LLMD who will treat me and this will be outside the NHS and possibly outside the UK ...
Thankyou for reading my story ..please educate yourself and your family and friends on Lyme....... because if I can stop this happening to someone else it will do some good ...please if you are on facebook join the group that was my daughters idea and my husband set up ...called Would you pay a £1 to help save my mummy's life?..pass it on to your friends and ask them to pass it on and so on ...the more people that join ..the more awareness there is and it also gives my little girl some hope and makes us not feel not so totally alone in this situation http://www.facebook.com/profile.php?id=1109650270&ref=search#!/group.php?gid=134675306560444&ref=mf thankyou so much if you would like to donate click on the link below or if you would like to send a cheque ..please make payable to ...The Sonia Smith Appeal Fund 29 St Johns Rd
Bletchley
Milton Keynes
MK3 5DU
England
or for further queries contact soniasmithappeal@aol.com
****************************************************************
Initially Sonia was admitted to hospital with a suspected Brain Tumour or stroke but when tests showed nothing she was dismissed with 'It's all in your head' despite symptoms of paralysis, Bells Palsy, verbal stuttering and difficulties speaking, light and sound sensitivity to mention just a few of her symptoms.
As most of us find with Lyme Disease here in the UK like elsewhere in the World getting diagnosis even with positive Igenex tests is no guarantee that NHS will treat with antibiotics. Quite remarkable that this ID specialist would consider IV arsenic for some rare African Disease and yet simple antibiotics even oral antibiotics have significantly improved the lives of many patients with a clinical diagnosis of Lyme Disease let alone a serological diagnosis.
All these consultants in denial should listen to the recent presentations at the Institute of Medicine Workshop showing how complex all these tick borne diseases are to test for let alone to treat. Click here
Tuesday, 23 November 2010
335 EMERGING INFECTIOUS DISEASES SINCE 1940-60% ZOONOTIC
A Systems Approach in Understanding Tick-Borne Diseases: People, Animals, and the Ecosystem
Richard Ostfeld, Ph.D. Disease Ecologist
Cary Institute of Ecosystem Studies
'We live in an age of emerging infectious diseases. A recent study by Jones et al demonstrates that no fewer than 335 new infectious diseases of humans have emerged since 1940.
Of those Infectious Diseases about 60% of them are Zoonotic, meaning that the pathogen replicates within and is transmitted from non humans vertebrate species to humans.
Of these Zoonotic diseases about 72% are from wildlife with the remainder coming from domestic animals of various kinds.
Fully 30% of the newly emerging diseases are vector borne including most of the Tick borne diseases we will be talking about today and tomorrow and throughout the 20th Centuray and into the 21st Century the rate of emergence of new Infectious Diseases of humans has increased.'
The above were the opening remarks by Richard Ostfeld at A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term
To view and listen to the whole presentation click here
*****************************************************************************
Much of the controversy over diagnosis and treatment of Lyme Disease comes back to the old problem of definition of Lyme Disease and it is interesting to see how the ILADS conferences (London and USA) moved away from that narrow definition of Lyme Disease, (Dr Bransfield's presentation of the Decade of the Microbe) as they are finding many of their patients are multiply infected with different organisms.
Dr Richard Horowitz interviewed for a TV program here refers to MCIDS - Multiple Chronic Infectious Diseases Syndrome found through CALDA website here
********************************************************************
I was lucky that my Chronic symptoms of Arthritis and muscle weakness which developed following tick bites and Bulls eye rashes responded so well to long term antibiotics although it took 4 years for my GP to realise the connection to the tick bites.
I never tested fully positive on any of the two tests given but listening to the Institute of Medicine Workshop it seems that many of the tick borne illnesses have problems over testing and many of the available tests are not given to patients like myself who are chronically ill.
Through Eurolyme I am in touch with patients who have Neurolgical symptoms, some diagnosed with Multiple Sclerosis, Parkinson's and Motor Neurons who are responding well to long term antibiotics.
So whilst science is still evolving over these complex emerging diseases it is best to keep an open mind and see what works well for us as individuals.
Richard Ostfeld, Ph.D. Disease Ecologist
Cary Institute of Ecosystem Studies
'We live in an age of emerging infectious diseases. A recent study by Jones et al demonstrates that no fewer than 335 new infectious diseases of humans have emerged since 1940.
Of those Infectious Diseases about 60% of them are Zoonotic, meaning that the pathogen replicates within and is transmitted from non humans vertebrate species to humans.
Of these Zoonotic diseases about 72% are from wildlife with the remainder coming from domestic animals of various kinds.
Fully 30% of the newly emerging diseases are vector borne including most of the Tick borne diseases we will be talking about today and tomorrow and throughout the 20th Centuray and into the 21st Century the rate of emergence of new Infectious Diseases of humans has increased.'
The above were the opening remarks by Richard Ostfeld at A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term
To view and listen to the whole presentation click here
*****************************************************************************
Much of the controversy over diagnosis and treatment of Lyme Disease comes back to the old problem of definition of Lyme Disease and it is interesting to see how the ILADS conferences (London and USA) moved away from that narrow definition of Lyme Disease, (Dr Bransfield's presentation of the Decade of the Microbe) as they are finding many of their patients are multiply infected with different organisms.
Dr Richard Horowitz interviewed for a TV program here refers to MCIDS - Multiple Chronic Infectious Diseases Syndrome found through CALDA website here
********************************************************************
I was lucky that my Chronic symptoms of Arthritis and muscle weakness which developed following tick bites and Bulls eye rashes responded so well to long term antibiotics although it took 4 years for my GP to realise the connection to the tick bites.
I never tested fully positive on any of the two tests given but listening to the Institute of Medicine Workshop it seems that many of the tick borne illnesses have problems over testing and many of the available tests are not given to patients like myself who are chronically ill.
Through Eurolyme I am in touch with patients who have Neurolgical symptoms, some diagnosed with Multiple Sclerosis, Parkinson's and Motor Neurons who are responding well to long term antibiotics.
So whilst science is still evolving over these complex emerging diseases it is best to keep an open mind and see what works well for us as individuals.
Wednesday, 6 October 2010
RESEARCH GAPS IN TICKBORNE DISEASES
Congressional Record
111th Congress (2009-2010)
ISSUES REGARDING LYME DISEASE -- (Extensions of Remarks - September 29, 2010)
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:
[Page: E1872] GPO's PDF
---SPEECH OF
HON. CHRISTOPHER H. SMITH
OF NEW JERSEY
IN THE HOUSE OF REPRESENTATIVES
WEDNESDAY, SEPTEMBER 29, 2010
Mr. SMITH of New Jersey. Madam Speaker, as chair of the congressional Lyme Disease Caucus and a person who has been closely involved in Lyme disease issues for over twenty years, I want to bring to your attention extremely troubling issues regarding Lyme disease.
Lyme disease is the most common of all vector-borne infections in the U.S., with approximately 290,000 new cases in 2008. With the increase in Lyme cases, problems due to poor diagnostics and ineffective treatments for Lyme disease have become almost overwhelming--affecting larger numbers of people over longer periods of time.
Many patients are angry because progress in addressing Lyme disease has been impeded by entrenched bias and a lack of accountability in the science of tick borne diseases. It is critical that we identify biases and impediments that are constraining the science on Lyme and to open up the dialogue to honest and transparent debate. The scientists who have long been marginalized, the treating physicians who have felt intimidated and threatened, and most importantly the sick patients and their families need our help.
My main purpose here today is to introduce for inclusion in the Congressional Record the following statement ``The Patient Perspectives on the Research Gaps in Tick Borne Diseases,'' written by three of the Nation's largest Lyme disease advocacy organizations, who represent tens of thousands of patients. I believe that this statement provides important perspectives that need to be heard and taken to heart.
PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES
(Submitted by Time for Lyme, the national Lyme Disease Association, and the California Lyme Disease Association on behalf of our patients across the United States)
In December 2009, Labor HHS 2010 appropriations language, signed into law by President Obama, encouraged the National Institutes of Health (NIH) to ``sponsor a scientific conference on Lyme and tick-borne diseases ..... the conference should represent the broad spectrum of scientific views ..... and should provide a forum for public participation and input from individuals with Lyme disease.'' The language also requires NIH to identify research gaps to understand the ``mechanisms of persistent infection.'' The passage of this language represents a significant opportunity to summarize and solidify the issues that prevent scientific progress for a disease recognized here for 35 years, if, and only if, this process occurs without bias. Progress can be accomplished if the stewards commit to the elimination of predisposition by key decision makers.
It is not clear why the NIH elected to subcontract this issue to the Institute of Medicine (IOM), given that the existing NIH conference structure contains the best process to address the appropriations language requirements. According to the NIH Consensus Development Program, which explains the two relevant types of conferences offered by NIH, ``when the available evidence is weak or contradictory, or when a common practice is not supported by high-quality evidence, the State-of-the-Science label is chosen.'' This conference format would appropriately address the research gaps that exist for Lyme and tick-borne diseases as it provides a ``snapshot in time'' of the state of knowledge on the conference rather than a policy statement of the NIH or the Federal Government.
In Lyme disease, there are two distinct disease paradigms, each providing science to support its claims. One paradigm views the disease as ``hard to catch and easy to cure'' and denies the existence of chronic Lyme disease--persistent infection with Borrelia burgdorferi, the spirochete that causes the disease. Under this paradigm, the state of the science for patients with chronic Lyme disease is closed. Any treatment is considered too risky because practitioners are unable to determine the cause or extent of patient symptoms, or they view the symptoms
[Page: E1873] GPO's PDFas insignificant and write off the patients' complaints as psychiatric in nature. This leaves seriously ill patients without any viable therapeutic avenues. It also shuts the door on future research necessary to get patients to a state of wellness.
The alternative paradigm says that the science is too unsettled to be definitive and there can be one or more causes of persistent symptoms after initial treatment in an individual who has been infected with the agent of Lyme disease. These causes include the possibility of persistent infection, or a post-infectious process, or a combination of both, with the Lyme bacterium itself driving the autoimmune process. This paradigm allows doctors the ability to exercise their clinical judgment and provide therapies that are helping their patients.
Patients with Lyme disease need a research agenda that reflects outcomes that matter to patients, namely effective diagnostic tools and effective treatments that restore them to health. The reason there are two disease paradigms in Lyme disease is because central pieces of the puzzle are missing or are inadequate. The first area of concern involves testing.
There are no reliable biomarkers of the disease.\1\ Current diagnostic tests commonly used do not detect the spirochete that causes Lyme disease, rather, they detect only whether the patient has developed antibodies to the pathogen. Antibody production, if it registers on the tests at all, takes weeks to appear, thus rendering the current tests ineffective in the earlier and more easily addressed stage. Additionally, the Lyme antibody has been shown to form a ``complex'' with the bacterium itself--and tests cannot detect ``complex'' antibodies. Once triggered, antibody reactions may remain long after an infection has been treated, also clouding the diagnostic and treatment picture.
The two-tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) is very specific for Lyme disease (99%), so it gives few false positives. But the tests have a uniformly low sensitivity (56%)--missing 88 of every 200 patients with Lyme disease. By comparison, AIDS tests have a sensitivity of 99.5%--missing only one of every 200 infected patients.\2\ Sensitive AIDS tests were developed less than 10 years into the disease, while archaic Lyme tests remain unreliable 35 years later. There is a critical need for research exploring newer technologies such as polymerase chain reaction (PCR), which is used with many other diseases, and cutting-edge proteomics. Strain variations and co-infections with other organisms, often transmitted by the same tick bite, obscure the diagnostic picture further.
A vast number of strains of Borrelia burgdorferi have been identified. Variation in strain may cause differing symptoms or severity of symptoms as well as determine the appropriate antibiotics and duration of treatment needed to clear the infection.\3\ Different strains may also express different proteins. Preliminary research shows that proteins need to be examined to find the ones most often expressed, then using microarray technology, doctors may be able to diagnose patients using a chip which contains the proteins.
Research is needed concerning the role of mutation on persistence. Some research indicates that bacteria can exchange genetic material, probably contributing to its ability to invade different systems in the body--some may have a proclivity for the heart muscle, others for the brain, and some for muscles and joints. By exchanging genetic material, bacteria may be able to form a symbiotic relationship to avoid detection by the immune response or to further invade the body.
To date, every NIH-funded treatment research study has been designed using the inaccurate diagnostic test results as part of the entry criteria. The entry criterion in these studies excluded the vast majority of Lyme patients and created sample sizes too small (less than 220 patients to date) to detect clinically important treatment effects or generalize to the clinical population. Moreover, Lyme has not attracted industry funding for treatment approaches, which places the disease at a considerable research disadvantage. To detect clinically relevant treatment effects requires much larger treatment trials with sample populations that reflect those seen in clinical practice.\4\
One thing that past research has demonstrated is that patients with Lyme are a heterogeneous population. Hence, the course of illness and responsiveness to treatment may vary depending on the duration of onset of the disease to its diagnosis and treatment, the presence of co-infections, comorbid factors, other genetic characteristics of the patients, and the virulence of the strain(s) with which the patient is infected. Research sample populations must reflect those seen in clinical practice to yield clinically relevant results.
As advised by the Appropriations language, research on the pathophysiology of Lyme disease is necessary. Research projects need to be designed which determine the course of the disease from inception, and which utilize treatments that effectively interfere with the mechanisms that allow the infection to persist. Little to no government sponsored science has been dedicated to the effects on persistence of the different forms of the Lyme bacterium (cyst vs. flagellar), the role, if any, of biofilms, sequestration of the organism from the immune system, the exchange and mutation of genetic material of the spirochete, and the role that components of the bacterial genome may play in protecting it from eradication by the immune system or antibiotics. Understanding the pathology of the organism can greatly enhance targeted diagnostics and treatment modalities.
Patients also need studies that explore a range of treatment options. The ideal antibiotics, route of administration, and duration of treatment for any stage of Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection in all patients, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.\5\ Treatment failure rates suggest the need to re-examine the effectiveness of the currently recommended monotherapy as a treatment approach. Studies need to explore combination treatments and longer term treatment regimens, which have been critical to the successful treatment of AIDS and tuberculosis.
Patients need the type of outcomes research advocated by the IOM to examine how well treatments are working in actual clinical practice.\6\ While not all patients with chronic Lyme disease have returned to a state of wellness, many have, and we need to find out how and why. This information can then be applied to other patients and used to establish a research agenda for treatment that has a likelihood of success, rather than abandoning patients based on limited treatment trials.
The IOM process does not allow these research ideas to be heard in an unbiased and transparent fashion with balanced divergent viewpoints. While the NIH process precludes bias on the part of panel members, the IOM does not. Four of the six members of the IOM panel that have been selected belong to IDSA, a medical society that has a known bias against chronic Lyme disease diagnosis and treatment. Rather than providing curative treatments that restore health, the IDSA would provide costly and long term palliative treatments, presumably for life. While the NIH requires participation by major stakeholders (including patients and treating physicians), the IOM does not.
The summary of the IOM proceedings will reflect this pervasive lack of objectivity, undermining its integrity and credibility. Additionally, much IOM deliberation is done behind closed doors and an anonymous panel will be permitted to comment on the written record. Because of such flaws in the IOM proceedings, the three largest patient interest groups who were offered a brief opportunity to speak (TFL) at the IOM October 2010 meeting and an opportunity to provide a commissioned paper--CALDA, the LDA and TFL--pulled out of the conference in protest.
From a research perspective, strongly held paradigms can create a closed loop, and experiments may be designed, implemented and interpreted to support a particular viewpoint.\7\ The antidote to bias is to balance scientific perspectives and to ensure that all scientific viewpoints are being heard and explored. Given the extraordinary stream of federal funding granted to researchers who support the closed paradigm which was created and is supported by the Infectious Diseases Society of America (IDSA) and their vested interest in maintaining the status quo, it is not reasonable to expect this group of researchers to serve as neutral arbiters of scientific debates over competing scientific paradigms. For example, Lyme related panels dominated by IDSA have time and time again excluded opposing viewpoints from participating or controlled the review process to ensure outcomes that reinforce the IDSA paradigm. If past is prologue, it is obvious what the future holds for panels dominated by one group.
Worse, the small treatment trials that have been conducted have been given an undue amount of weight by IDSA researchers and in its guidelines and used to apply a degree of certainty on the science that far exceeds the limitations of the small sample sizes of the studies. Further, they claim that the state of the science is sufficient to determine with certainty that chronic Lyme disease does not exist, is not treatable with antibiotics, and that no further research on this topic is needed. Sample size affects the strength of the conclusions that may be drawn from them: ``Providing definitive answers in the face of low event rates and small-to-moderate treatment effects necessitates sample sizes in the thousands or tens of thousands. ..... Funding for such mega-trials is very limited, and is often restricted to industry sources.'' \8\
For that reason, the Connecticut Attorney General antitrust investigation into the development process of IDSA Lyme guidelines found exclusionary practices and suppression of divergent viewpoints on the part of IDSA panels that crafted IDSA 2000 and the 2006 Lyme disease guidelines. Although IDSA settled the investigation with the Attorney General by agreeing to review its guidelines with a panel without conflicts of interest, the control of the process was in the hands of IDSA, which again selected a panel consisting almost exclusively of IDSA members and excluding treating physicians who held divergent viewpoints.
It was patients who pressed for the language in the Appropriations bill that called for a review of the state of the science of Lyme disease. However, patients need that process to occur in a transparent manner, without bias, and with the participation of all stakeholders. Albert Einstein defined insanity as ``doing the same thing over and over again and expecting different results.''
[Page: E1874] GPO's PDFThis process is a perfect example of that insanity.
Patients want research which will restore their health. Their voice and the voice of the clinicians must be given the necessary weight to legitimize the research agenda and the research process. Truth in science can be achieved through open debate in an independent process free from bias and conflicts of interest. The scientific process fails when one side of a debate controls the arena and sets the rules to ensure that its viewpoint prevails.
Lorraine Johnson, JD, MBA, Chief Executive Officer, California Lyme Disease Association.
Patricia V. Smith, President, Lyme Disease Association, Inc.
Diane Blanchard/Deb Siciliano, Co-Presidents, Time for Lyme, Inc. ENDNOTES
\1\ Steiner I. Treating post Lyme disease: trying to solve one equation with too many unknowns. Neurology 2003; 60:1888-9.
\2\ Stricker RB, Johnson L. Lyme wars: let's tackle the testing. BMJ 2007; 335:1008.
\3\ Weintraub P. What we don't know about Lyme. Experience Life Magazine June 2009.
\4\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.
\5\ Hunfeld KP, Ruzic-Sabljic E, Norris DE, Kraiczy P, Strle F. In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates cultured from patients with erythema migrans before and after antimicrobial chemotherapy. Antimicrobial agents and chemotherapy 2005; 49:1294-301.
\6\ Institute of Medicine (Committee on Quality of Health Care in America). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press, 2001.
\7\ Ernst E, Canter PH. Investigator bias and false positive findings in medical research. Trends Pharmacol. Sci. 24(5), 219-221 (2003).
\8\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.
***************************************************
111th Congress (2009-2010)
ISSUES REGARDING LYME DISEASE -- (Extensions of Remarks - September 29, 2010)
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:
[Page: E1872] GPO's PDF
---SPEECH OF
HON. CHRISTOPHER H. SMITH
OF NEW JERSEY
IN THE HOUSE OF REPRESENTATIVES
WEDNESDAY, SEPTEMBER 29, 2010
Mr. SMITH of New Jersey. Madam Speaker, as chair of the congressional Lyme Disease Caucus and a person who has been closely involved in Lyme disease issues for over twenty years, I want to bring to your attention extremely troubling issues regarding Lyme disease.
Lyme disease is the most common of all vector-borne infections in the U.S., with approximately 290,000 new cases in 2008. With the increase in Lyme cases, problems due to poor diagnostics and ineffective treatments for Lyme disease have become almost overwhelming--affecting larger numbers of people over longer periods of time.
Many patients are angry because progress in addressing Lyme disease has been impeded by entrenched bias and a lack of accountability in the science of tick borne diseases. It is critical that we identify biases and impediments that are constraining the science on Lyme and to open up the dialogue to honest and transparent debate. The scientists who have long been marginalized, the treating physicians who have felt intimidated and threatened, and most importantly the sick patients and their families need our help.
My main purpose here today is to introduce for inclusion in the Congressional Record the following statement ``The Patient Perspectives on the Research Gaps in Tick Borne Diseases,'' written by three of the Nation's largest Lyme disease advocacy organizations, who represent tens of thousands of patients. I believe that this statement provides important perspectives that need to be heard and taken to heart.
PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES
(Submitted by Time for Lyme, the national Lyme Disease Association, and the California Lyme Disease Association on behalf of our patients across the United States)
In December 2009, Labor HHS 2010 appropriations language, signed into law by President Obama, encouraged the National Institutes of Health (NIH) to ``sponsor a scientific conference on Lyme and tick-borne diseases ..... the conference should represent the broad spectrum of scientific views ..... and should provide a forum for public participation and input from individuals with Lyme disease.'' The language also requires NIH to identify research gaps to understand the ``mechanisms of persistent infection.'' The passage of this language represents a significant opportunity to summarize and solidify the issues that prevent scientific progress for a disease recognized here for 35 years, if, and only if, this process occurs without bias. Progress can be accomplished if the stewards commit to the elimination of predisposition by key decision makers.
It is not clear why the NIH elected to subcontract this issue to the Institute of Medicine (IOM), given that the existing NIH conference structure contains the best process to address the appropriations language requirements. According to the NIH Consensus Development Program, which explains the two relevant types of conferences offered by NIH, ``when the available evidence is weak or contradictory, or when a common practice is not supported by high-quality evidence, the State-of-the-Science label is chosen.'' This conference format would appropriately address the research gaps that exist for Lyme and tick-borne diseases as it provides a ``snapshot in time'' of the state of knowledge on the conference rather than a policy statement of the NIH or the Federal Government.
In Lyme disease, there are two distinct disease paradigms, each providing science to support its claims. One paradigm views the disease as ``hard to catch and easy to cure'' and denies the existence of chronic Lyme disease--persistent infection with Borrelia burgdorferi, the spirochete that causes the disease. Under this paradigm, the state of the science for patients with chronic Lyme disease is closed. Any treatment is considered too risky because practitioners are unable to determine the cause or extent of patient symptoms, or they view the symptoms
[Page: E1873] GPO's PDFas insignificant and write off the patients' complaints as psychiatric in nature. This leaves seriously ill patients without any viable therapeutic avenues. It also shuts the door on future research necessary to get patients to a state of wellness.
The alternative paradigm says that the science is too unsettled to be definitive and there can be one or more causes of persistent symptoms after initial treatment in an individual who has been infected with the agent of Lyme disease. These causes include the possibility of persistent infection, or a post-infectious process, or a combination of both, with the Lyme bacterium itself driving the autoimmune process. This paradigm allows doctors the ability to exercise their clinical judgment and provide therapies that are helping their patients.
Patients with Lyme disease need a research agenda that reflects outcomes that matter to patients, namely effective diagnostic tools and effective treatments that restore them to health. The reason there are two disease paradigms in Lyme disease is because central pieces of the puzzle are missing or are inadequate. The first area of concern involves testing.
There are no reliable biomarkers of the disease.\1\ Current diagnostic tests commonly used do not detect the spirochete that causes Lyme disease, rather, they detect only whether the patient has developed antibodies to the pathogen. Antibody production, if it registers on the tests at all, takes weeks to appear, thus rendering the current tests ineffective in the earlier and more easily addressed stage. Additionally, the Lyme antibody has been shown to form a ``complex'' with the bacterium itself--and tests cannot detect ``complex'' antibodies. Once triggered, antibody reactions may remain long after an infection has been treated, also clouding the diagnostic and treatment picture.
The two-tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) is very specific for Lyme disease (99%), so it gives few false positives. But the tests have a uniformly low sensitivity (56%)--missing 88 of every 200 patients with Lyme disease. By comparison, AIDS tests have a sensitivity of 99.5%--missing only one of every 200 infected patients.\2\ Sensitive AIDS tests were developed less than 10 years into the disease, while archaic Lyme tests remain unreliable 35 years later. There is a critical need for research exploring newer technologies such as polymerase chain reaction (PCR), which is used with many other diseases, and cutting-edge proteomics. Strain variations and co-infections with other organisms, often transmitted by the same tick bite, obscure the diagnostic picture further.
A vast number of strains of Borrelia burgdorferi have been identified. Variation in strain may cause differing symptoms or severity of symptoms as well as determine the appropriate antibiotics and duration of treatment needed to clear the infection.\3\ Different strains may also express different proteins. Preliminary research shows that proteins need to be examined to find the ones most often expressed, then using microarray technology, doctors may be able to diagnose patients using a chip which contains the proteins.
Research is needed concerning the role of mutation on persistence. Some research indicates that bacteria can exchange genetic material, probably contributing to its ability to invade different systems in the body--some may have a proclivity for the heart muscle, others for the brain, and some for muscles and joints. By exchanging genetic material, bacteria may be able to form a symbiotic relationship to avoid detection by the immune response or to further invade the body.
To date, every NIH-funded treatment research study has been designed using the inaccurate diagnostic test results as part of the entry criteria. The entry criterion in these studies excluded the vast majority of Lyme patients and created sample sizes too small (less than 220 patients to date) to detect clinically important treatment effects or generalize to the clinical population. Moreover, Lyme has not attracted industry funding for treatment approaches, which places the disease at a considerable research disadvantage. To detect clinically relevant treatment effects requires much larger treatment trials with sample populations that reflect those seen in clinical practice.\4\
One thing that past research has demonstrated is that patients with Lyme are a heterogeneous population. Hence, the course of illness and responsiveness to treatment may vary depending on the duration of onset of the disease to its diagnosis and treatment, the presence of co-infections, comorbid factors, other genetic characteristics of the patients, and the virulence of the strain(s) with which the patient is infected. Research sample populations must reflect those seen in clinical practice to yield clinically relevant results.
As advised by the Appropriations language, research on the pathophysiology of Lyme disease is necessary. Research projects need to be designed which determine the course of the disease from inception, and which utilize treatments that effectively interfere with the mechanisms that allow the infection to persist. Little to no government sponsored science has been dedicated to the effects on persistence of the different forms of the Lyme bacterium (cyst vs. flagellar), the role, if any, of biofilms, sequestration of the organism from the immune system, the exchange and mutation of genetic material of the spirochete, and the role that components of the bacterial genome may play in protecting it from eradication by the immune system or antibiotics. Understanding the pathology of the organism can greatly enhance targeted diagnostics and treatment modalities.
Patients also need studies that explore a range of treatment options. The ideal antibiotics, route of administration, and duration of treatment for any stage of Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection in all patients, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.\5\ Treatment failure rates suggest the need to re-examine the effectiveness of the currently recommended monotherapy as a treatment approach. Studies need to explore combination treatments and longer term treatment regimens, which have been critical to the successful treatment of AIDS and tuberculosis.
Patients need the type of outcomes research advocated by the IOM to examine how well treatments are working in actual clinical practice.\6\ While not all patients with chronic Lyme disease have returned to a state of wellness, many have, and we need to find out how and why. This information can then be applied to other patients and used to establish a research agenda for treatment that has a likelihood of success, rather than abandoning patients based on limited treatment trials.
The IOM process does not allow these research ideas to be heard in an unbiased and transparent fashion with balanced divergent viewpoints. While the NIH process precludes bias on the part of panel members, the IOM does not. Four of the six members of the IOM panel that have been selected belong to IDSA, a medical society that has a known bias against chronic Lyme disease diagnosis and treatment. Rather than providing curative treatments that restore health, the IDSA would provide costly and long term palliative treatments, presumably for life. While the NIH requires participation by major stakeholders (including patients and treating physicians), the IOM does not.
The summary of the IOM proceedings will reflect this pervasive lack of objectivity, undermining its integrity and credibility. Additionally, much IOM deliberation is done behind closed doors and an anonymous panel will be permitted to comment on the written record. Because of such flaws in the IOM proceedings, the three largest patient interest groups who were offered a brief opportunity to speak (TFL) at the IOM October 2010 meeting and an opportunity to provide a commissioned paper--CALDA, the LDA and TFL--pulled out of the conference in protest.
From a research perspective, strongly held paradigms can create a closed loop, and experiments may be designed, implemented and interpreted to support a particular viewpoint.\7\ The antidote to bias is to balance scientific perspectives and to ensure that all scientific viewpoints are being heard and explored. Given the extraordinary stream of federal funding granted to researchers who support the closed paradigm which was created and is supported by the Infectious Diseases Society of America (IDSA) and their vested interest in maintaining the status quo, it is not reasonable to expect this group of researchers to serve as neutral arbiters of scientific debates over competing scientific paradigms. For example, Lyme related panels dominated by IDSA have time and time again excluded opposing viewpoints from participating or controlled the review process to ensure outcomes that reinforce the IDSA paradigm. If past is prologue, it is obvious what the future holds for panels dominated by one group.
Worse, the small treatment trials that have been conducted have been given an undue amount of weight by IDSA researchers and in its guidelines and used to apply a degree of certainty on the science that far exceeds the limitations of the small sample sizes of the studies. Further, they claim that the state of the science is sufficient to determine with certainty that chronic Lyme disease does not exist, is not treatable with antibiotics, and that no further research on this topic is needed. Sample size affects the strength of the conclusions that may be drawn from them: ``Providing definitive answers in the face of low event rates and small-to-moderate treatment effects necessitates sample sizes in the thousands or tens of thousands. ..... Funding for such mega-trials is very limited, and is often restricted to industry sources.'' \8\
For that reason, the Connecticut Attorney General antitrust investigation into the development process of IDSA Lyme guidelines found exclusionary practices and suppression of divergent viewpoints on the part of IDSA panels that crafted IDSA 2000 and the 2006 Lyme disease guidelines. Although IDSA settled the investigation with the Attorney General by agreeing to review its guidelines with a panel without conflicts of interest, the control of the process was in the hands of IDSA, which again selected a panel consisting almost exclusively of IDSA members and excluding treating physicians who held divergent viewpoints.
It was patients who pressed for the language in the Appropriations bill that called for a review of the state of the science of Lyme disease. However, patients need that process to occur in a transparent manner, without bias, and with the participation of all stakeholders. Albert Einstein defined insanity as ``doing the same thing over and over again and expecting different results.''
[Page: E1874] GPO's PDFThis process is a perfect example of that insanity.
Patients want research which will restore their health. Their voice and the voice of the clinicians must be given the necessary weight to legitimize the research agenda and the research process. Truth in science can be achieved through open debate in an independent process free from bias and conflicts of interest. The scientific process fails when one side of a debate controls the arena and sets the rules to ensure that its viewpoint prevails.
Lorraine Johnson, JD, MBA, Chief Executive Officer, California Lyme Disease Association.
Patricia V. Smith, President, Lyme Disease Association, Inc.
Diane Blanchard/Deb Siciliano, Co-Presidents, Time for Lyme, Inc. ENDNOTES
\1\ Steiner I. Treating post Lyme disease: trying to solve one equation with too many unknowns. Neurology 2003; 60:1888-9.
\2\ Stricker RB, Johnson L. Lyme wars: let's tackle the testing. BMJ 2007; 335:1008.
\3\ Weintraub P. What we don't know about Lyme. Experience Life Magazine June 2009.
\4\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.
\5\ Hunfeld KP, Ruzic-Sabljic E, Norris DE, Kraiczy P, Strle F. In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates cultured from patients with erythema migrans before and after antimicrobial chemotherapy. Antimicrobial agents and chemotherapy 2005; 49:1294-301.
\6\ Institute of Medicine (Committee on Quality of Health Care in America). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press, 2001.
\7\ Ernst E, Canter PH. Investigator bias and false positive findings in medical research. Trends Pharmacol. Sci. 24(5), 219-221 (2003).
\8\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.
***************************************************
For detailed information leading to the above Speech see CALDA blog at Lyme Policy Wonk
Saturday, 28 August 2010
DOES IT SOUND AS THOUGH A COUPLE OF WEEKS ANTIBIOTICS WOULD CURE THIS?
Once the Borrelia Lyme bacteria enter the blood stream of a human, it is immediately susceptible to attack.
An immediate cellular response of neutrophils and macrophage will try and digest the bacteria, and also present markers for the bacteria to lymphocytes that will over the course of several weeks begin to turn out killer T-cells and B-cells that produce specific antibodies.
The first mechanism to survive is to leave the blood stream!
Borrelia can do this by either entering the blood vessel cells called endothelial cells, or transiting the blood-vessel through gaps it creates, and entering other tissues.
If the bacteria do this quickly enough, not enough bacteria will be present to cause an immune response. In other words, it tricks the immune system into thinking that there is no active persistent infection.
If the infection load in the blood is too low, the immune response is muted. But the bacteria can persist in low numbers in other tissues.
Often the first tissues the bacteria find themselves in; is back in the skin usually at the tick-bite-site.
The cellular response to attack the bacteria that is literally swimming through the skin cells, causes the redness, and the appearance of the rash.
Over time parts of the rash fade as the immune response lessens as the bacteria move away from ground-zero.
Another place Borrelia burgdorferi can hide is in the skin. We have seen in culture that fibroblast skin cells can safely harbor the bacteria, and prevent powerful drugs like IV ceftriaxone at high concentrations to have almost no lethal effect on the sequestered bacteria.
If we can’t kill the bacteria in in-vitro skin studies, why would we think we have any better luck in a living human when there are even better places to hide?
Georgilis K, Peacocke M, and Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi from ceftriaxone in vitro. J. Infect Dis. 1992;166:440-444
It isn’t what we don’t know about Lyme disease that is causing patients to suffer. It is what we have known and chosen to ignore that is slowly killing patients by diminishing their quality of life until they have nothing left to fight with.
Once the bacteria enter the blood stream, with every beat of the heart the bacteria are dispersed throughout the body. These motile leech-like creatures use their ability to swim and their ability to attach to cells to their advantage to survive.
The above is a short extract from Lyme on the Brain (Part 3-A)
Lecture Notes of Tom Grier
Tomgrier2001@yahoo.com
The whole article can be found on Madison area support group here
An immediate cellular response of neutrophils and macrophage will try and digest the bacteria, and also present markers for the bacteria to lymphocytes that will over the course of several weeks begin to turn out killer T-cells and B-cells that produce specific antibodies.
The first mechanism to survive is to leave the blood stream!
Borrelia can do this by either entering the blood vessel cells called endothelial cells, or transiting the blood-vessel through gaps it creates, and entering other tissues.
If the bacteria do this quickly enough, not enough bacteria will be present to cause an immune response. In other words, it tricks the immune system into thinking that there is no active persistent infection.
If the infection load in the blood is too low, the immune response is muted. But the bacteria can persist in low numbers in other tissues.
Often the first tissues the bacteria find themselves in; is back in the skin usually at the tick-bite-site.
The cellular response to attack the bacteria that is literally swimming through the skin cells, causes the redness, and the appearance of the rash.
Over time parts of the rash fade as the immune response lessens as the bacteria move away from ground-zero.
Another place Borrelia burgdorferi can hide is in the skin. We have seen in culture that fibroblast skin cells can safely harbor the bacteria, and prevent powerful drugs like IV ceftriaxone at high concentrations to have almost no lethal effect on the sequestered bacteria.
If we can’t kill the bacteria in in-vitro skin studies, why would we think we have any better luck in a living human when there are even better places to hide?
Georgilis K, Peacocke M, and Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi from ceftriaxone in vitro. J. Infect Dis. 1992;166:440-444
It isn’t what we don’t know about Lyme disease that is causing patients to suffer. It is what we have known and chosen to ignore that is slowly killing patients by diminishing their quality of life until they have nothing left to fight with.
Once the bacteria enter the blood stream, with every beat of the heart the bacteria are dispersed throughout the body. These motile leech-like creatures use their ability to swim and their ability to attach to cells to their advantage to survive.
The above is a short extract from Lyme on the Brain (Part 3-A)
Lecture Notes of Tom Grier
Tomgrier2001@yahoo.com
The whole article can be found on Madison area support group here
Tuesday, 17 August 2010
AWARENESS IN THE MEDIA
An excellent article where the Daily Mail raises awareness of Lyme disease read here
Stella Huyshe-Shires, chair of the charity Lyme Disease Action: 'The risk of Lyme disease - which can cause fever and dizziness, bladder problems and fatigue - is increasing everywhere in the world. The bacteria which causes this awful disease is carried in ticks - in their saliva. 'So I travel with a tick remover - a small hooked device that works by gently lifting and twisting the tick out of the skin without pressure.' (Tick remover, £4.99, lymediseaseaction.org.uk)
My response
All excellent advice.
Stella I wish I had read your advice years ago.
I did not know that Lyme Disease could be caught in the UK I had thought it unique to USA. It took 5 doctors and 3 rheumatologists 4 years to diagnose me.
I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Musculo Skeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated and then a chance course of antibiotics led GP to suspect Lyme Disease.
Following ILADS guidelines on long term antibiotics I have my health and my life back.
Where is the awareness?
When my MP Anne Milton wrote to ask HPA that question a couple of years ago the reply came back that they had updated their website!! What use is that if there is no public awareness.
Where I live in Guildford I am in touch with 23 people diagnosed with Chronic Lyme disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and already responding to antibiotics.
A terrible quote from the IrishTimes can be seen here
'Thanks to all of you who responded to the column on ticks and Lyme disease some weeks back. One reader told me of an effective way to remove ticks from the skin, courtesy of her father who survived the trenches of the first World War. Light a match and blow it out. Apply the still hot head of the match to the protruding tick, which will promptly withdraw its head from under the skin'.
My response by e mail to the newspaper.
I take great exception to the flippant and misleading comment in your recent article. You do your public a gross mis service with this comment. Your original article was reasonably written and you did quote ' Dr Paul McKeown, of the Health Protection Surveillance Centre. “The entire tick, including any mouthparts which might break off, should be removed with a tweezers by gripping it close to the skin.' which is currently the correct advice following over 19000 research articles on Borrelia infection clearly not known by the soldiers in the trenches during the first World War.
By shocking the tick in any way either by heat, Vaseline, or grabbing the tick, risks the tick regurgitating it's stomach contents into you, if it is infected.
As well as Borrelia there are many other infections a tick can carry including Bartonella, Babesia, Ehrlichia, Anaplasma, Mycoplasma and others most of which can cause serious health problems alongside a Borrelia infection although rarely tested for in the chronically sick patient by our Health Authorities.
You have barely scratched the surface of the problems for patients who contract these tick borne diseases, please write something to contradict your latest error of judgment at the very least.
I am in touch with a number of patients from Ireland with Chronic ill health following a tick bite some travel to USA to see World experts in this field.
This is a link to a blog I follow which is trying to get the Health Authorities to take note of the problems http://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdfhttp://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdf
I was sent this link from a Canadian Lyme patient who was infected in Ireland
http://www.ncbi.nlm.nih.gov/pubmed/9360424
'Data of Lyme disease seroprevalence has been established in European patients or at-risk populations and in blood donors or control subjects'. 'The range of antibodies to B. burgdorferi in blood donors or control subjects shows the highest spikes in Ireland 15%'
This is also mentioned on Tick talk Ireland.
I have long been critical of our Media in the UK for their lack of wanting to get involved in the controversy surrounding diagnosis, blood tests and treating of Lyme Disease, but I can not forgive them their lack of at least wanting to raise awareness amongst the general public, I was pleasantly surprised at your original article but hope you do something to rectify your latest misleading quote.
I live in Guildford Surrey and have suffered from Lyme disease since 2003 it took 5 doctors and 3 rheumatologists 4 years to diagnose me. My GP suspected Lyme Disease after a chance course of antibiotics improved my symptoms although I had attended surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias.
As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and finally Lyme Disease. I was retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing and walking across a room and could not walk up or down stairs properly for 3 1/2 years now after long term antibiotics following alternative guidelines by International Lyme and Associated Diseases society rather than the restrictive HPA/IDSA guidelines I am recovered, I have no pain, no disability and can garden and cycle again.
My experience is like so many others whose doctors fail to catch this awful disease at the time of the tick bite when it is so easily treated although on a longer and higher course of antibiotics than NHS would give, as several patients have found to their cost. My local surgery is now treating a number of patients in the early stages of tick bite but also several others whose illness has become chronic like mine.
I now know of 23 patients in the Guildford area with Chronic Lyme Disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and on antibiotics his symptoms are improving.
There is so much more that our media could do to help raise awareness of this emerging disease but also bring into the open the controversy that surrounds this illness the best place to start your education would be by reading some of the information on www.lymediseaseaction.org.uk website
There are an increasing number of doctors and consultants now in the UK supporting ILADS way of treating, some because they or their family member have become infected and they have had to travel to the USA to see the expert Lyme Doctors.
'Of course, you can never replace the value of talking with patients.' It is the listening to patients that our doctors have lost the art of.
My greatest concern is for the children who are the most vulnerable and the hardest to get adequate treatment for, if you read some of the e mails I have had from parents of children with Chronic Lyme Disease it would break your heart.
------------------------------------------------
So much more needs to be done and the media could do so much more to raise public awareness and save countless people from this awful disease.
Stella Huyshe-Shires, chair of the charity Lyme Disease Action: 'The risk of Lyme disease - which can cause fever and dizziness, bladder problems and fatigue - is increasing everywhere in the world. The bacteria which causes this awful disease is carried in ticks - in their saliva. 'So I travel with a tick remover - a small hooked device that works by gently lifting and twisting the tick out of the skin without pressure.' (Tick remover, £4.99, lymediseaseaction.org.uk)
My response
All excellent advice.
Stella I wish I had read your advice years ago.
I did not know that Lyme Disease could be caught in the UK I had thought it unique to USA. It took 5 doctors and 3 rheumatologists 4 years to diagnose me.
I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Musculo Skeletal Disease, Polymyalgia Rheumatica as my symptoms deteriorated and then a chance course of antibiotics led GP to suspect Lyme Disease.
Following ILADS guidelines on long term antibiotics I have my health and my life back.
Where is the awareness?
When my MP Anne Milton wrote to ask HPA that question a couple of years ago the reply came back that they had updated their website!! What use is that if there is no public awareness.
Where I live in Guildford I am in touch with 23 people diagnosed with Chronic Lyme disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and already responding to antibiotics.
A terrible quote from the IrishTimes can be seen here
'Thanks to all of you who responded to the column on ticks and Lyme disease some weeks back. One reader told me of an effective way to remove ticks from the skin, courtesy of her father who survived the trenches of the first World War. Light a match and blow it out. Apply the still hot head of the match to the protruding tick, which will promptly withdraw its head from under the skin'.
My response by e mail to the newspaper.
I take great exception to the flippant and misleading comment in your recent article. You do your public a gross mis service with this comment. Your original article was reasonably written and you did quote ' Dr Paul McKeown, of the Health Protection Surveillance Centre. “The entire tick, including any mouthparts which might break off, should be removed with a tweezers by gripping it close to the skin.' which is currently the correct advice following over 19000 research articles on Borrelia infection clearly not known by the soldiers in the trenches during the first World War.
By shocking the tick in any way either by heat, Vaseline, or grabbing the tick, risks the tick regurgitating it's stomach contents into you, if it is infected.
As well as Borrelia there are many other infections a tick can carry including Bartonella, Babesia, Ehrlichia, Anaplasma, Mycoplasma and others most of which can cause serious health problems alongside a Borrelia infection although rarely tested for in the chronically sick patient by our Health Authorities.
You have barely scratched the surface of the problems for patients who contract these tick borne diseases, please write something to contradict your latest error of judgment at the very least.
I am in touch with a number of patients from Ireland with Chronic ill health following a tick bite some travel to USA to see World experts in this field.
This is a link to a blog I follow which is trying to get the Health Authorities to take note of the problems http://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdfhttp://ticktalkireland.files.wordpress.com/2010/08/stats-analysis-lyme-ireland.pdf
I was sent this link from a Canadian Lyme patient who was infected in Ireland
http://www.ncbi.nlm.nih.gov/pubmed/9360424
'Data of Lyme disease seroprevalence has been established in European patients or at-risk populations and in blood donors or control subjects'. 'The range of antibodies to B. burgdorferi in blood donors or control subjects shows the highest spikes in Ireland 15%'
This is also mentioned on Tick talk Ireland.
I have long been critical of our Media in the UK for their lack of wanting to get involved in the controversy surrounding diagnosis, blood tests and treating of Lyme Disease, but I can not forgive them their lack of at least wanting to raise awareness amongst the general public, I was pleasantly surprised at your original article but hope you do something to rectify your latest misleading quote.
I live in Guildford Surrey and have suffered from Lyme disease since 2003 it took 5 doctors and 3 rheumatologists 4 years to diagnose me. My GP suspected Lyme Disease after a chance course of antibiotics improved my symptoms although I had attended surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias.
As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and finally Lyme Disease. I was retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing and walking across a room and could not walk up or down stairs properly for 3 1/2 years now after long term antibiotics following alternative guidelines by International Lyme and Associated Diseases society rather than the restrictive HPA/IDSA guidelines I am recovered, I have no pain, no disability and can garden and cycle again.
My experience is like so many others whose doctors fail to catch this awful disease at the time of the tick bite when it is so easily treated although on a longer and higher course of antibiotics than NHS would give, as several patients have found to their cost. My local surgery is now treating a number of patients in the early stages of tick bite but also several others whose illness has become chronic like mine.
I now know of 23 patients in the Guildford area with Chronic Lyme Disease the latest case like me was diagnosed with PMR and then Parkinson's last Christmas he has now tested positive for Lyme Disease and on antibiotics his symptoms are improving.
There is so much more that our media could do to help raise awareness of this emerging disease but also bring into the open the controversy that surrounds this illness the best place to start your education would be by reading some of the information on www.lymediseaseaction.org.uk website
There are an increasing number of doctors and consultants now in the UK supporting ILADS way of treating, some because they or their family member have become infected and they have had to travel to the USA to see the expert Lyme Doctors.
'Of course, you can never replace the value of talking with patients.' It is the listening to patients that our doctors have lost the art of.
My greatest concern is for the children who are the most vulnerable and the hardest to get adequate treatment for, if you read some of the e mails I have had from parents of children with Chronic Lyme Disease it would break your heart.
------------------------------------------------
So much more needs to be done and the media could do so much more to raise public awareness and save countless people from this awful disease.
Wednesday, 11 August 2010
PUBLIC HEALTH RISKS OF LYME DISEASE IN UK
THE PUBLIC HEALTH RISKS OF LYME DISEASE IN
BRECKLAND, U.K.: AN INVESTIGATION OF
ENVIRONMENTAL AND SOCIAL FACTORS
TRACEY V. MAWBY* and ANDREW A. LOVETT
School of Environmental Sciences, University of East Anglia, Norwich NR4 7TJ, U.K.
Abstract This paper considers the public health risks of Lyme disease, a borrelial infection transmitted to humans chiefly by nymphal Ixodes ticks. A study undertaken in the Breckland area of East Anglia, U.K., combined analysis of the spatial and temporal factors affecting tick activity at recreational sites with a survey of current levels of disease awareness among visitors to these locations. Significant re- lationships were found between densities of questing ticks and vegetation type, relative humidity and temperature. More than two thirds of the general public visiting the sites were aware ticks could carry diseases, but only 13% recognized an unfed nymph, and under half knew that Lyme disease could be contracted from tick bites. Such results need to be taken into account when formulating public health and education measures. # 1998 Elsevier Science Ltd. All rights reserved
Key words Lyme disease, Borrelia burgdorferi, Ixodes ricinus, Breckland, risk assessment
The full article can be accessed here
Thank you anonymous for your comment on my last post and I suspect for the link into the above research posted today on Eurolyme.
It is a disgrace that as you say so much research has already been done for many years into ticks their location and habitat and the public's risk and perceived risk. I was aware that there was research being done with my local University Surrey, Oxford University and the Forestry Commission on risks and perceived risks. I was rather surprised when I heard of this that money and time was being spent on such research and yet trying to get local bodies and organisations to publicise the risks is such an up hill battle. Having been in touch with 23 people suffering from Chronic Lyme Disease in my locality in and around Guildford.
I saw 5 doctors and 3 rheumatologists, attending surgery with bites, bulls eye rashes summer flu' and migrating arthralgias all red flags for Lyme although it took four years and a chance course of antibiotics given for a sinus chest infection which significantly improved my symptoms and led my then GP to suspect Lyme Disease. By then other cases had presented in the early stages and been confirmed with NHS positive tests.
I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica and eventually Lyme disease. It was only on long term antibiotics for Lyme Disease as per Burrascano Guidelines that I started to recover and now am nearly 100%, with no pain, no disability and can garden and cycle again.
I was aware of Lyme Disease but had always thought it to be something unique to the USA. I even have a second cousin who was involved in the research in the early 1980's something to do with being in charge of the blood banks at that time. He later moved into a different field and became Chief of one of the National Institutes of Health although now retired. I contacted him to see if he could help me find a specialist in the UK to assess my condition, I had no reply now I understand why. However he did say to my father that he was not at all surprised to hear that it was Lyme Disease from my description, that the blood tests were not reliable being antibody tests(something most doctors would realise if they thought for themselves)and that he was not surprised to hear long term antibiotics were helping.
The more you get involved with reading the research and talking to doctors the more you realise there is so much more known but hushed up about Lyme Disease.
I had actually asked one doctor about my migrating arthralgias if it could be due to an insect bite the answer a firm no.
Sometimes thinking about the denial and the wasted years of my life which could have been avoided with just more awareness can make me feel a little bitter but what really concerns me is the hundreds if not thousands of people who are in the same situation many of whom will not even realise their health problems are due to a tiny tick bite.
The biggest disgrace is that in not publicising awareness so that people can protect themselves and seek early medical attention they put our children at risk, that is unforgivable.
As Anonymous said 'One wonders why those who were working on ticks for decades at the University of Oxford did not have the decency to warn the UK, her government and people, about the many pathogens that ticks carry. Shame on them, and all those who oversaw their work. What honours and medals they have gained, while all the time staying tight-lipped and aloof from the scourge wreaked upon the ordinary folk. Scientists have studied ticks and the viral and bacterial diseases they carry, at Oxford and other UK labs, since the 1940s at least. May their god forgive them, because I cannot, not when I think of the agony and despair caused by this Lyme disease, and whatever else is in the mixture.'
How do they sleep at night? Knowing the risks and dangers and not raising public awareness.
Statistics are just that, if you happen to be that one person infected and suffering serious health problems it doesn't matter what the statistical chances of being bitten and infected are you need help and medical attention.
BRECKLAND, U.K.: AN INVESTIGATION OF
ENVIRONMENTAL AND SOCIAL FACTORS
TRACEY V. MAWBY* and ANDREW A. LOVETT
School of Environmental Sciences, University of East Anglia, Norwich NR4 7TJ, U.K.
Abstract This paper considers the public health risks of Lyme disease, a borrelial infection transmitted to humans chiefly by nymphal Ixodes ticks. A study undertaken in the Breckland area of East Anglia, U.K., combined analysis of the spatial and temporal factors affecting tick activity at recreational sites with a survey of current levels of disease awareness among visitors to these locations. Significant re- lationships were found between densities of questing ticks and vegetation type, relative humidity and temperature. More than two thirds of the general public visiting the sites were aware ticks could carry diseases, but only 13% recognized an unfed nymph, and under half knew that Lyme disease could be contracted from tick bites. Such results need to be taken into account when formulating public health and education measures. # 1998 Elsevier Science Ltd. All rights reserved
Key words Lyme disease, Borrelia burgdorferi, Ixodes ricinus, Breckland, risk assessment
The full article can be accessed here
Thank you anonymous for your comment on my last post and I suspect for the link into the above research posted today on Eurolyme.
It is a disgrace that as you say so much research has already been done for many years into ticks their location and habitat and the public's risk and perceived risk. I was aware that there was research being done with my local University Surrey, Oxford University and the Forestry Commission on risks and perceived risks. I was rather surprised when I heard of this that money and time was being spent on such research and yet trying to get local bodies and organisations to publicise the risks is such an up hill battle. Having been in touch with 23 people suffering from Chronic Lyme Disease in my locality in and around Guildford.
I saw 5 doctors and 3 rheumatologists, attending surgery with bites, bulls eye rashes summer flu' and migrating arthralgias all red flags for Lyme although it took four years and a chance course of antibiotics given for a sinus chest infection which significantly improved my symptoms and led my then GP to suspect Lyme Disease. By then other cases had presented in the early stages and been confirmed with NHS positive tests.
I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica and eventually Lyme disease. It was only on long term antibiotics for Lyme Disease as per Burrascano Guidelines that I started to recover and now am nearly 100%, with no pain, no disability and can garden and cycle again.
I was aware of Lyme Disease but had always thought it to be something unique to the USA. I even have a second cousin who was involved in the research in the early 1980's something to do with being in charge of the blood banks at that time. He later moved into a different field and became Chief of one of the National Institutes of Health although now retired. I contacted him to see if he could help me find a specialist in the UK to assess my condition, I had no reply now I understand why. However he did say to my father that he was not at all surprised to hear that it was Lyme Disease from my description, that the blood tests were not reliable being antibody tests(something most doctors would realise if they thought for themselves)and that he was not surprised to hear long term antibiotics were helping.
The more you get involved with reading the research and talking to doctors the more you realise there is so much more known but hushed up about Lyme Disease.
I had actually asked one doctor about my migrating arthralgias if it could be due to an insect bite the answer a firm no.
Sometimes thinking about the denial and the wasted years of my life which could have been avoided with just more awareness can make me feel a little bitter but what really concerns me is the hundreds if not thousands of people who are in the same situation many of whom will not even realise their health problems are due to a tiny tick bite.
The biggest disgrace is that in not publicising awareness so that people can protect themselves and seek early medical attention they put our children at risk, that is unforgivable.
As Anonymous said 'One wonders why those who were working on ticks for decades at the University of Oxford did not have the decency to warn the UK, her government and people, about the many pathogens that ticks carry. Shame on them, and all those who oversaw their work. What honours and medals they have gained, while all the time staying tight-lipped and aloof from the scourge wreaked upon the ordinary folk. Scientists have studied ticks and the viral and bacterial diseases they carry, at Oxford and other UK labs, since the 1940s at least. May their god forgive them, because I cannot, not when I think of the agony and despair caused by this Lyme disease, and whatever else is in the mixture.'
How do they sleep at night? Knowing the risks and dangers and not raising public awareness.
Statistics are just that, if you happen to be that one person infected and suffering serious health problems it doesn't matter what the statistical chances of being bitten and infected are you need help and medical attention.
Tuesday, 10 August 2010
EDINBURGH TACKING TICKS- £2.5 MILLION FUNDING FROM WELLCOME TRUST
BBC NEWS EDINBURGH
£2.5m for Edinburgh University to tackle ticks.
Ticks can transmit number of severe and potentially deadly diseases to humans including Lyme disease Scientists at Edinburgh University have been awarded £2.5m to tackle the growing health risk posed by ticks.
Campers and hikers have long known the misery ticks can cause.
Now scientists at the Roslin Institute aim to find new ways to prevent diseases transmitted by the tiny insect-like creatures.
The university will establish the Roslin Wellcome Trust Tick Cell Biobank with the funding from the Wellcome Trust.
It says the biobank will house the world's largest collection of tick cell lines, enabling scientists to carry out advanced research.
The scientists hope to understand how viruses and bacteria, which are transmitted by ticks and which cause a range of human diseases, can survive for long periods of time within ticks without damaging them.
In parts of the world, ticks can transmit a number of severe and potentially deadly diseases to humans and animals, including Lyme disease, tick-borne encephalitis and Crimean-Congo haemorrhagic fever. In Britain, cases of Lyme disease are dramatically increasing each year.
In the rest of Europe, tick-borne encephalitis is now endemic in 27 countries, including Germany and Croatia.
Tick numbers are surging in Europe and scientists warn that changing climate patterns and increasing globalisation could enable them to spread into new areas.
The Tick Cell Biobank team and collaborators from seven other European countries have received further funding from the European Union to train a new generation of scientists specialising in ticks and their related diseases.
Project leader Professor John Fazakerley said: "Tick-transmitted infections are likely to be increasingly important in the future. Understanding these diseases and training scientists to undertake research on them is important for both human and animal heath". http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-10914730
Excellent news, once again one has to ask why there are those that dismiss Lyme Disease as rare and easy to cure and then there are the over 19000 research articles written about it and then now this £2.5 million for research on Tickborne illness. I do hope those researchers are fully aware of the enormity of their task not just an interesting experiment on ticks but major World Health consequences can benefit from their research as Eva Sapi is finding from her own similar research.
In the UK alone I am in touch through Eurolyme with 2300 patients (mostly from the UK). We have all struggled to get diagnosis and struggled to get appropriate treatment that can help us. All have been diagnosed with many things as their multiple symptoms progress such as ME/CFS, Fibromyalgia, Arthritis, Muscle Weakness, facial palsies, Multiple Sclerosis and other Neurological illnesses.
I have posted before on Eva Sapi's work and entering her name in the search box on the right hand side will bring up my earlier posts, or click here
£2.5m for Edinburgh University to tackle ticks.
Ticks can transmit number of severe and potentially deadly diseases to humans including Lyme disease Scientists at Edinburgh University have been awarded £2.5m to tackle the growing health risk posed by ticks.
Campers and hikers have long known the misery ticks can cause.
Now scientists at the Roslin Institute aim to find new ways to prevent diseases transmitted by the tiny insect-like creatures.
The university will establish the Roslin Wellcome Trust Tick Cell Biobank with the funding from the Wellcome Trust.
It says the biobank will house the world's largest collection of tick cell lines, enabling scientists to carry out advanced research.
The scientists hope to understand how viruses and bacteria, which are transmitted by ticks and which cause a range of human diseases, can survive for long periods of time within ticks without damaging them.
In parts of the world, ticks can transmit a number of severe and potentially deadly diseases to humans and animals, including Lyme disease, tick-borne encephalitis and Crimean-Congo haemorrhagic fever. In Britain, cases of Lyme disease are dramatically increasing each year.
In the rest of Europe, tick-borne encephalitis is now endemic in 27 countries, including Germany and Croatia.
Tick numbers are surging in Europe and scientists warn that changing climate patterns and increasing globalisation could enable them to spread into new areas.
The Tick Cell Biobank team and collaborators from seven other European countries have received further funding from the European Union to train a new generation of scientists specialising in ticks and their related diseases.
Project leader Professor John Fazakerley said: "Tick-transmitted infections are likely to be increasingly important in the future. Understanding these diseases and training scientists to undertake research on them is important for both human and animal heath". http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-10914730
Excellent news, once again one has to ask why there are those that dismiss Lyme Disease as rare and easy to cure and then there are the over 19000 research articles written about it and then now this £2.5 million for research on Tickborne illness. I do hope those researchers are fully aware of the enormity of their task not just an interesting experiment on ticks but major World Health consequences can benefit from their research as Eva Sapi is finding from her own similar research.
In the UK alone I am in touch through Eurolyme with 2300 patients (mostly from the UK). We have all struggled to get diagnosis and struggled to get appropriate treatment that can help us. All have been diagnosed with many things as their multiple symptoms progress such as ME/CFS, Fibromyalgia, Arthritis, Muscle Weakness, facial palsies, Multiple Sclerosis and other Neurological illnesses.
I have posted before on Eva Sapi's work and entering her name in the search box on the right hand side will bring up my earlier posts, or click here
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
Tuesday, 20 July 2010
AUTISM VIDEOS
These excellent videos from Lymenaide are a must watch for parents with children suffering from Autism.
This Spring Lymenaide and And What Productions filmed an interview with Dr Chitra Bhakta.
Dr Bhakta is a DAN (Defeat Autism Now) and an LLMD. She spoke with us about Lyme Induced Autism, Lyme disease and treatment.
http://lymenaide.wordpress.com/
'When I started testing these (Autistic) children 8 out of 10 were testing positive for Lyme and Bartonella and other co infections of Lyme Disease.'
Dr Bhakta points out that Lyme is endemic throughout the World.
Her closing words are 'the tests are not the be all and end all.' (She had already pointed out that most of the tests for Chronic Lyme will turn out negative)
'Doctors are human beings and have fallibilities.'
'The best person is to have belief in yourself.'
For earlier posts on Autism and Lyme Disease enter Autism in the search in the right column or click here
Wednesday, 14 July 2010
BBC NEWS LYME DISEASE WARNING
BBC NEWS York & North Yorkshire
Lyme disease threat to walkers on North York Moors
Walkers on the North York Moors are being warned to check their skin carefully after being out on the moors.
Ticks, from deer and sheep, infected with Lyme disease are said to pose a serious risk to health as Peter Lugg found out.
To watch the clip click here
Ticks can be found throughout the UK so it is important to be vigilant. It is easy to miss the sometimes poppy seed sized tick and not everyone gets the bulls eye rash. Not all ticks carry Lyme Disease, Borrelia, but ticks which feed off any small mammal such as rats, mice or birds etc., can carry a multitude of infections most of which are never even tested for. We can't exactly ask the tick if it picked up an infection in it's last feed and if so which infection. By the time we are really sick it is often too late to treat as an early stage infection and if that opportunity is missed then longer courses of treatment are sometimes needed to clear the infection according to the ILADS Guidelines.
It is good to see an increasing awareness in the media but so much more needs to be done. If only I had known 7 years ago that we could catch Lyme Disease in the UK, I had thought it unique to USA. If only the doctors I saw with bites, rashes , summer flu' like no other I had ever experienced, migrating arthralgias, not to mention the doctor I asked if it could be from an insect bite, who firmly said no with the shake of her head, if only they had known.
To think that all that arthritis pain and disability, muscle weakness, dysphargia, fatigue, peripheral neuropathies could have been avoided with more doctor and patient awareness. 6 1/2 years of chronic illness could have been avoided with just a few weeks antibiotics.
Shocking isn't it but what is more shocking is the children who suffer undiagnosed and untreated and they are the most vulnerable.
Thankfully there are a growing number of doctors here in the UK who are realising there is more to this controversy over Lyme treatment than they have been led to believe. Where I live in Guildford there are an increasing number of patients I am getting to know with Chronic Lyme Disease but also an increasing number of patients who are seeking and receiving early medical attention.
For more information look at UK charity website Lyme Disease Action
Lyme disease threat to walkers on North York Moors
Walkers on the North York Moors are being warned to check their skin carefully after being out on the moors.
Ticks, from deer and sheep, infected with Lyme disease are said to pose a serious risk to health as Peter Lugg found out.
To watch the clip click here
Ticks can be found throughout the UK so it is important to be vigilant. It is easy to miss the sometimes poppy seed sized tick and not everyone gets the bulls eye rash. Not all ticks carry Lyme Disease, Borrelia, but ticks which feed off any small mammal such as rats, mice or birds etc., can carry a multitude of infections most of which are never even tested for. We can't exactly ask the tick if it picked up an infection in it's last feed and if so which infection. By the time we are really sick it is often too late to treat as an early stage infection and if that opportunity is missed then longer courses of treatment are sometimes needed to clear the infection according to the ILADS Guidelines.
It is good to see an increasing awareness in the media but so much more needs to be done. If only I had known 7 years ago that we could catch Lyme Disease in the UK, I had thought it unique to USA. If only the doctors I saw with bites, rashes , summer flu' like no other I had ever experienced, migrating arthralgias, not to mention the doctor I asked if it could be from an insect bite, who firmly said no with the shake of her head, if only they had known.
To think that all that arthritis pain and disability, muscle weakness, dysphargia, fatigue, peripheral neuropathies could have been avoided with more doctor and patient awareness. 6 1/2 years of chronic illness could have been avoided with just a few weeks antibiotics.
Shocking isn't it but what is more shocking is the children who suffer undiagnosed and untreated and they are the most vulnerable.
Thankfully there are a growing number of doctors here in the UK who are realising there is more to this controversy over Lyme treatment than they have been led to believe. Where I live in Guildford there are an increasing number of patients I am getting to know with Chronic Lyme Disease but also an increasing number of patients who are seeking and receiving early medical attention.
For more information look at UK charity website Lyme Disease Action
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