Mis diagnosed as Fibromyalgia, ME/CFS, Musculoskeletal Disease,Poly Myalgia Rheumatica - significantly improved when treated for Lyme Disease.
Perhaps more aptly described as Multi-Systemic Infectious Disease Syndrome - MSIDS.
BMJ2015; 351doi: http://dx.doi.org/10.1136/bmj.h6520(Published 03 December 2015)Cite this as: BMJ 2015;351:h6520
Many more questions than answers
Lyme disease is the most common vector borne disease in North America and Europe, with 300 000 new cases in the United States1 and an estimated 100 000 new cases in Europe each year.2 These numbers are likely to be underestimates because case reporting is inconsistent3 and many infections go undiagnosed.4 Climate change may have contributed to a rapid increase in tick borne diseases, with migratory birds disseminating infected ticks.5
Our common understanding of Lyme disease is that a tick bite is followed by the development of a classic rash pattern (erythema migrans). When treated early with a relatively short course of antibiotics, most patients have good outcomes.6 But the standard two tier testing for Lyme disease is inaccurate in the early----
Liesbeth Borgermans, professor,
Christian Perronne, professor,
Ran Balicer, professor ,
Ozren Polasek, professor ,
Valerie Obsomer, ecological and environmental risk expert
From doctors who treat many patients and doctors who struggle to get family members treated and one that interested me from Dr Dryden -Consultant in infection and microbiology
Hampshire Hospitals NHS Foundation Trust & RIPL, PHE, Porton Royal Hampshire County Hospital, Winchester, SP11 6NU
'Much research is needed on this group, as outlined in the editorial, but most urgently there needs to be research on diagnosis to establish whether persisting infection is present in some of the patients with persisting chronic symptoms. This will allow the development of more appropriate treatments for this group. It will also save the anguish and confusion that many patients experience when forced to spend money on tests which have not been clinically validated.'
Do I sense a slight change in Dr Dryden's views?
What a pity Dr Dryden has recently closed his private clinic for treating Lyme patients which with the help of his doctor colleague was at last making in roads into helping a handful of the many patients, who had been dismissed by their NHS doctors with no medical help for their illness following tick bites.
Time PHE got their act together and opened specialty clinics to learn the best ways to treat these patients.
PHE empty promises could if put into practice save NHS valuable resources for this patient group as well as help alleviate suffering of many thousands of patients.
Prof Perronne has given his views many times at various conferences, published papers and press articles
Lyme and associated tick-borne diseases: global challenges in the context of a public health threat
Christian Perronne Infectious Diseases Unit, Hôpitaux Universitaires Paris-Ile de France-Ouest, Assistance Publique – Hôpitaux de Paris, University of Versailles – Saint Quentin en Yvelines, Garches, France
and Prof Lewis research on persister cells of Borrelia. http://lookingatlyme.blogspot.co.uk/2015/05/borrelia-burgdorferi-lyme-disease-forms.html Dr Horowitz has been working closely with these doctors to try to develop new approaches and claims to be having some success such that trials are due to be done shortly. An earlier post on Dr Horowitz http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html So I was very interested to read a summary about a recent presentation from Dr Horowitz at a weekend conference, this is discussed at length on the Lymewhisperers blog http://lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/ 'Dr. Horowitz and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. Horowitz explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. Horowitz whispered.' Go to the above link to read more and thank you to Lymewhisperer for sharing this important information with us. Are Mycobacterium Drugs
Effective for Treatment
Resistant Lyme Disease, TickBorne
Autoimmune Disease? Richard I. Horowitz* and Phyllis R. Freeman
Lyme borreliosis (Borrelia burgdorferi) Total cases of positive serology in the first 3 quarters of 2015 = 606
of these 429 were considered to be Acute infections. Lyme disease (data from the Rare and Imported Pathogens Laboratory, Porton) 'During the third quarter of 2015, a total of 421 cases of laboratory confirmed Lyme disease were
reported, compared with 300 during the third quarter of 2014. Of these cases, 340 were acute (including
30 neuroborreliosis) and 81 were past infections.
Of the acute cases, 182 were male (aged 2- 90 years, median 46) and 151 were female (aged 1- 93
years, median 51). Gender was unrecorded for seven cases and age was unrecorded for one case.' 'Thirty-four (10%) of the acute cases reported foreign travel. The majority of cases had travelled in
Europe (n=24), eight had travelled in the Americas, one had been to the Middle East, and one to the Far
East. One hundred and fifty-six acute cases reported an insect bite, of whom 145 specified a tick bite.
Sixty-eight cases reported erythema migrans as a presenting symptom.'
History - 1887 Augustus Waller first discovered the use of ECG at St Marys London carrying out the first ECG on a dog and then moved to humans. He also mapped the electrical field around the heart and produced a heart graph using PQRST.
Long QT Syndrome is found in 1 in 2500 of the population and can be hereditary.
Can cause rapid heart beat, seizures, respiratory arrest.
All SSRI's ( Selective serotonin reuptake inhibitors) can cause LQT interval.
All anti psychotic medication can cause LQT interval
Erythromycin orally can cause LQT interval a 300% higher risk of death from this than in patients taking Amoxycillin.
Environmental exposure to certain metals eg lead can increase risk of LQT interval.
Discussed Atrioventricular block He discussed a paper in 1990 written by Dr Allen Steere on a case of AV block leading to death after an appendectomy - which said that Lyme Carditis must be considered especially in young patients with AV block.
Discussed a further cardiac study didn't catch the authors name 20% had right induction delay but after 2 weeks treatment ECG returned to normal.
Started by giving a tribute to the work of Dr Jean Monro
He did his thesis on the Autonomic nervous system (ANS) and the immune system, his colleagues thought ANS outdated - it was the beginning of a career in ANS. In Germany growing up he became interested in homeopathy, acupuncture and ANS.
Moving to the US different legal systems only allowed to use his hands so adopted his methodology.
Talks about 3 components
1. Genetic and epigenetic
2. Environmental challenge
3. The immune response to toxins, microbes, parasites.
"The response of the host makes the disease" Lewis Thomas MD -NEJM 1972.
Treating chronic Illnesss he uses 4 principles
1. Basic physiology - exercise, diet, trauma, work and transgenerational physiologies, hormones, vitamins, osteopathy,EMR protection
2. Decreasing toxic body burden- metals,chemicals & Biotoxins from extra and intra cellular matrix, EMR protection.
3. Immune Modulation- up regulating blocked or underactive immune function & down regulating hyperactive ones
Spoke briefly about the journey he and his family had been on for the last 6 weeks. He has quickly recognised the lack of help from NHS and acknowledged how caring the lyme community was, he expects to interview for Chief Executive next week for a new charity for Lyme whose aim will be to get NHS to take responsibility for this patient group. He has been moved by the numbers of tragic stories. Much of what he said can be read on his Facebook page.
Gave a brief update of a result of a visit to Porton Down in June. There will be a new initiative to try and raise funds for work on a UK direct testing method to find Borrelia this will be launched in a few days