Margaret I was saddened to read your tweets regarding Lyme Disease. So much is happening that is turning old assumptions on their head with this disease and at last PHE Dr Brooks and Dr Dryden from Porton Down are working with Lyme Disease Action.
Testing is problematic and length of treatment uncertain.
As you clearly have ideas on the subject would it interest you in attending a meeting being held in London on Tick borne Diseases. Several Specialist doctors and vets asked for the meeting,Drs Brooks and Dryden will be going, Dr Roger Evans is interested and others. The presenters will be 7 US based doctors researchers who are travelling to London on invitation to this event.
It will be held on the 7th June but by invitation only – if you have an interest in this field and are prepared to consider that all is clearly not known about this complex disease then let me know and I will arrange with the organiser for you to have a complimentary invitation.
Meanwhile you might like to look at the research James Lind Alliance did with Lyme Disease Action with support from Dept of Health and PHE details on LDA website http://www.lymediseaseaction.org.uk/
hello Joanne – all I said was that there was a load of terrible info about Lyme disease online – I’m surprised – surely you don’t disagree with this ! as for ‘ideas’ – no, not really, as I said, we see (relatively) a lot of tick related problems in Scotland – and I’m interested in evidence above opinion. best., mgt
Hello Margaret Thank you for replying.
I am also interested in evidence but unfortunately the James Lind Alliance found that the current guidelines on PHE have many uncertainties in what they thought was evidence. In fact the IDSA GUidelines from which UK Guidance is taken were found to have low evidence to support their guidelines based more on opinion than evidence.
Yes there is a lot of misinformation on the internet but a lot of misinformation is also fed to our GP’s, those who think they know this disease and have a handle on it would be shocked at how little they do know.
Yes you more than most might recognise the EM rash in all it’s many forms but what of the c20% of patients that don’t present with an EM or don’t think to go to the doctor with the rash as they are not aware of it’s significance.
Are you aware of problems surrounding the previous ‘expert’ at HPA who was involved with an Ad Hoc group of IDSA doctors who said they could not win this war on science but needed to fight it Socio Political. Problems were found in her lab and testing there was in question in some cases.
Dr Brooks at Porton has said that we need better testing and is actively looking at alternatives.
Have you read papers related to Dr Barthold’s work? finding persistence in mice, dogs and monkeys? He says persistence is the norm.
Yes early treatment can eradicate the organism but what of the hundreds of patients in UK who don’t get that early treatment. CDC and Dr Ho Yen both acknowledge that real figures are likely to be more than 10x serological figures so about 10000 cases a year in UK- what are the other 9000 who were not diagnosed and remained ill going to be diagnosed with or treated for? Dr Dryden says many are diagnosed with CFS. Dr Shepherd is also at last taking an interest.
Then of course what of research by Dr Alan MacDonald who found Borrelia DNA in the brains of patients with Alzheimer’s at autopsy. This was also found independently by Dr Judith Miklossy http://miklossy.ch/ Miklossy also found Dental spirochetes and Lancashire University Dental department published similar findings last year in respect of Dental pathogens.
It is easy to dismiss patients as mis informed but in reality many are quite capable of reading research papers which are published prodigiously -surprising for a disease that is supposed to be rare and easy to cure.
Dr Steere published in the 80’s that patients treated on antibiotics within 4 weeks of the bite 20% remained with symptoms sometimes years later.
I was one of the patients that was not diagnosed at bite an EM stage it took 4 years before a chance course of antibiotics ( whilst on steroids for PMR diagnosis) significantly improved my joint pain and muscle weakness and led my GP to suspect Lyme Disease my records showed my history of bites, rashes migrating arthralgias. Thankfully I recovered and had an open minded doctor who could see on antibiotics I improved when they stopped I relapsed. She continued on longer courses until I regained my health. I was retired on ill health grounds housebound and unable to walk up or down stairs for 3 1/2 years. Now I have no pain or muscle weakness can garden and cycle.
Why do some recover quickly and others struggle to deal with the infection, science hasn’t answered that yet nor are patients adequately assessed, most are just told by consultants that is not my area of expertise door closed.
At least Dr Dryden in the few months of opening the first NHS Lyme Disease Clinic got to see some patients who responded to longer courses of antibiotics, before the clinic closed from funding problems.
Yes I am one of those people who you believe share mis information but I am one of very many who have regained their health on treatment most NHS doctors believe can’t help.
For reliable information please have a look at LDA website.