Not a lot going on out there, Lyme news wise. Here's some.
Jan 26, 2018 17:18:14 GMT
acres likes this
Post by Admin/ Traveler on Jan 26, 2018 17:18:14 GMT
So, they decided to do a survey of confirmed Lyme patients with PTLDS (what they call Post Treatment Lyme Disease Syndrome).
And, here's what they determined:
"Objective: To characterize a case series of patients with well-documented PTLDS compared to a sample of healthy controls.
Methods: Sixty-one participants met the proposed case definition for PTLDS. Twenty-six healthy controls had neither a clinical history of Lyme disease nor current antibodies to Borrelia burgdorferi. Participants with PTLDS and controls were evaluated by physical exam, clinical laboratory testing, standardized questionnaires, and a 36-item current symptom list.
Results: Compared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression (Fatigue Severity Scale: 50.0 ± 10.6 vs. 19.8 ± 8.6; Short-Form McGill Pain Questionnaire: 13.7 ± 8.3 vs. 0.8 ± 1.9; Pittsburgh Sleep Quality Index: 10.1 ± 4.7 vs. 4.1 ± 2.1; Beck Depression Inventory-II: 15.1 ± 7.7 vs. 2.2 ± 3.2; p < 0.001 for each), and significantly lower quality of life (SF-36 Physical Component Score: 33.9 ± 9.7 vs. 55.1 ± 6.2; Mental Component Score: 42.9 ± 10.1 vs. 54.2 ± 5.4; p < 0.001 for each). Nineteen non-PTLDS-defining symptoms were found to be significantly more severe among participants with PTLDS than controls, including sleep difficultly and visual complaints. Initial delayed or misdiagnosis was characterized in 59.0% of participants with PTLDS, and 32.2% had abnormal vibratory sense.
Conclusion: Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.
The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome (green because I'm feeling sick after reading that)
(Trav here)
So, they won't admit that we have an ongoing infection causing our symptoms - but they say that there is an increased need for physician education to more effectively manage PTLDS......WITH WHAT?? O.M.G. This drives me nuts!!!!
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Okay, on to the next big article, and it's fair to say that I'm still not impressed.
Evaluation of a Major Surface Antigen of Babesia microti Merozoites as a Vaccine Candidate against Babesia Infection
They have decided to try to create a vaccine for Babesia microti, one of the strains that cause Babesia infections. After the Lyme vaccine 'incident', I don't trust them any further than I can throw them out my livingroom window. For those that weren't aware, the Lyme vaccine was not pulled from the market due to 'anti-vaxxers' protesting, it was because about 30% of those that got the vaccine (and then would have needed boosters for 3 years, I believe), actually developed the Lyme infection and/or intractable (un-treatable) arthritis. But they have worked hard to blame it not on the vaccine failure, but anti-vaxxers.
I actually remember a few of those that got the Lymerix vaccine came to the other site that I used to Moderate on posting looking for help. They said they were turned away from doctors, even LLMD's because they had the vaccine, and regular doctors wouldn't/couldn't help them any more than they help us. They were being told their positive test results were not valid, due to the vaccine, and yet they had all the same symptoms as we do.
So, I'm not likely to believe them about having a good vaccine for any other tick-borne infection either. I mean, if we can't even get the truth about what we face if we get this vaccine, I'm not going to subject myself to it! They've got a long way to go to prove to me at least, that they actually know what they are doing in creating vaccines against these infections.
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And, with their huge success in developing a good Lyme test (complete sarcasm here!!!) they have decided that they can develop an effective test for the Powassan virus - but of course, it's only for those where Lyme is endemic by their definition - even though the CDC is throwing out CDC positive test results rather than recording them for some states. Yep - I was fully CDC positive for Lyme and RMSF in 2008 - and Arkansas shows zero cases reported. Zero. I've talked to others that have found this to be true for their cases as well.
Development and Validation of a Serologic Test Panel for Detection of Powassan Virus Infection in U.S. Patients Residing in Regions Where Lyme Disease Is Endemic
And so their thought was to create another indirect enzyme immunoassay (EIA) - yep, just like the dreaded ELISA for Lyme. Seems they haven't learned much with these infections yet. I don't know much about Powassan Virus, but I have no faith in EIA tests for these infections.
And, here's what they determined:
"Objective: To characterize a case series of patients with well-documented PTLDS compared to a sample of healthy controls.
Methods: Sixty-one participants met the proposed case definition for PTLDS. Twenty-six healthy controls had neither a clinical history of Lyme disease nor current antibodies to Borrelia burgdorferi. Participants with PTLDS and controls were evaluated by physical exam, clinical laboratory testing, standardized questionnaires, and a 36-item current symptom list.
Results: Compared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression (Fatigue Severity Scale: 50.0 ± 10.6 vs. 19.8 ± 8.6; Short-Form McGill Pain Questionnaire: 13.7 ± 8.3 vs. 0.8 ± 1.9; Pittsburgh Sleep Quality Index: 10.1 ± 4.7 vs. 4.1 ± 2.1; Beck Depression Inventory-II: 15.1 ± 7.7 vs. 2.2 ± 3.2; p < 0.001 for each), and significantly lower quality of life (SF-36 Physical Component Score: 33.9 ± 9.7 vs. 55.1 ± 6.2; Mental Component Score: 42.9 ± 10.1 vs. 54.2 ± 5.4; p < 0.001 for each). Nineteen non-PTLDS-defining symptoms were found to be significantly more severe among participants with PTLDS than controls, including sleep difficultly and visual complaints. Initial delayed or misdiagnosis was characterized in 59.0% of participants with PTLDS, and 32.2% had abnormal vibratory sense.
Conclusion: Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.
The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome (green because I'm feeling sick after reading that)
(Trav here)
So, they won't admit that we have an ongoing infection causing our symptoms - but they say that there is an increased need for physician education to more effectively manage PTLDS......WITH WHAT?? O.M.G. This drives me nuts!!!!
-----------------------------------------------------------------------------
Okay, on to the next big article, and it's fair to say that I'm still not impressed.
Evaluation of a Major Surface Antigen of Babesia microti Merozoites as a Vaccine Candidate against Babesia Infection
They have decided to try to create a vaccine for Babesia microti, one of the strains that cause Babesia infections. After the Lyme vaccine 'incident', I don't trust them any further than I can throw them out my livingroom window. For those that weren't aware, the Lyme vaccine was not pulled from the market due to 'anti-vaxxers' protesting, it was because about 30% of those that got the vaccine (and then would have needed boosters for 3 years, I believe), actually developed the Lyme infection and/or intractable (un-treatable) arthritis. But they have worked hard to blame it not on the vaccine failure, but anti-vaxxers.
I actually remember a few of those that got the Lymerix vaccine came to the other site that I used to Moderate on posting looking for help. They said they were turned away from doctors, even LLMD's because they had the vaccine, and regular doctors wouldn't/couldn't help them any more than they help us. They were being told their positive test results were not valid, due to the vaccine, and yet they had all the same symptoms as we do.
So, I'm not likely to believe them about having a good vaccine for any other tick-borne infection either. I mean, if we can't even get the truth about what we face if we get this vaccine, I'm not going to subject myself to it! They've got a long way to go to prove to me at least, that they actually know what they are doing in creating vaccines against these infections.
-----------------------------------------------------------------------------
And, with their huge success in developing a good Lyme test (complete sarcasm here!!!) they have decided that they can develop an effective test for the Powassan virus - but of course, it's only for those where Lyme is endemic by their definition - even though the CDC is throwing out CDC positive test results rather than recording them for some states. Yep - I was fully CDC positive for Lyme and RMSF in 2008 - and Arkansas shows zero cases reported. Zero. I've talked to others that have found this to be true for their cases as well.
Development and Validation of a Serologic Test Panel for Detection of Powassan Virus Infection in U.S. Patients Residing in Regions Where Lyme Disease Is Endemic
And so their thought was to create another indirect enzyme immunoassay (EIA) - yep, just like the dreaded ELISA for Lyme. Seems they haven't learned much with these infections yet. I don't know much about Powassan Virus, but I have no faith in EIA tests for these infections.