The LDA and ILADS conferences, Philadelphia, October 2005 –
A presentation for Lyme Disease Action by Dr. David Owen.
Below is a summary of the conferences subdivided into the areas of science, medicine and politics. The order within the sections reflects the order in which presentations were given.
The conference began with Sven Bergstrom PhD who has many years of experience in the Borrelia field. His work has focussed on Borrelia in Africa where the problem of relapsing fever (RF) occurs, a disease caused by Borrelia species. There are many analogies with Lyme disease which itself is relapsing in nature. It was interesting to note that the problem of relapsing fever is eclipsed by malaria in Africa. The two often co-exist (up to 10% by PCR) but little attention is given to the RF if malaria is present. Mechanisms of immune evasion in RF were discussed and there is strong evidence that RF may persist for long periods: It is not just an acute disease as we have been lead to believe.
Steven Norris PhD has been working on factors which allow Borrelia to survive in the host for long periods. Although Borrelia is fully sequenced the function of most of its proteins is not known. It is apparent some genes are needed for survival in ticks and others in mammals. Many interact with the immune system in complex ways. Add on the diversity of the Borrelia genome and it is clear that the work to be done here will keep scientists busy for a very long time indeed and we will continue to be bewildered by the complexity of it all.
Dr. Klaus-Peter Hunfeld presented data relating to the sensitivity of Borrelia burgdorferi in vitro. Although variable degrees of sensitivity do occur there is no evidence of increased resistance after exposure to antibiotics in vitro. Comment - Classical resistance is mediated by enzyme induction and it is reassuring to note that this does not seem to occur in Borrelia. The reason for this may be that Borrelia simply does not need to use this strategy for survival – it has so many others it uses!
Terry Schultze PhD talked on the ways in which tick populations can be controlled. Biological control remains a dream but locally populations can be controlled with acaricides using various strategies. Correct timing of applications is crucial and varies with location.
The US military appears to be taking Lyme very seriously. Pat Smith, President of the LDA (Lyme Disease Association), told conference that the military may soon have access to portable equipment developed in US Army CHPPM which is based on PCR testing and enables them to determine whether a particular tick carries Borrelia or any of its co-infections. This will allow targeted treatment of bitten soldiers to be given on the spot. Comment - I wonder with prompt treatment how much future morbidity could be prevented?
Dr. Joshua Zimmerberg presented work on the culturing of Borrelia. Failure to culture Borrelia is perhaps the main reason that Borrelia has escaped attention for so long. There is hope that the culturing which takes place in gently rotating chambers will aid research into Borrelia.
In the ILADS meeting Jyotsna Shah PhD told us about testing as carried out in the Igenex lab. Igenex is the world leader in TBDs. The lab recognises the arbitrary restriction on Western Blot testing imposed by CDC criteria. The result is that more patients with Lyme disease receive benefit when Igenex is used. Testing should not be relied upon for LD diagnosis but to some degree we are all guilty of placing too much reliance on technology in medical practice.
Testing for LD is improving and Bernard Raxlen MD told the conference about promising findings using the new peptide based Elisa test. When this is used more cases will be picked up especially if the test is applied to co-infection resultant antibodies as well.
Alan Macdonald MD presented his work on Alzheimer’s dementia and Borrelia. He first publicised work in this field in the early 80s but he was widely criticised and actually driven out of practice. Borrelia DNA is being found by Dr. Macdonald in Alzheimer brains and this supports his earlier morphological work. Comment - I hope that this time his work will be received without prejudice.
Garth Nicolson PhD has spent many years working in the field of Chronic Fatigue Syndrome (CFS) like diseases and has highlighted the importance of Mycoplasma in the past. Mycoplasma can be found in ticks and is another co-infection for Lyme. Prof. Nicolson presented data relating to NTFactor, a commercially available nutritional supplement which may help some patients with persistent fatigue.
Lyme is such a huge field that sub-specialists (or perhaps “super-specialist” is a preferred term?) may be commonplace in the future.
Gregory Storch MD is one such specialist. He presented a talk about Ehrlichiosis/ Anaplasmosis a field in which he has great experience. Some very useful clinical pointers were given to a grateful audience.
Martin Fried MD reported a particular type of rash which may be common in Bartonella infections. He termed it a neo-vascularisation rash (new vessels induced by pro-inflammatory cytokines) and gave hints to help us distinguish it from striae or stretchmarks which it resembles. Comment -Funny rashes occur frequently in medicine and with modern technology we have a possibility of explaining some of them. The day will come I am sure when the investigation of any patient with a funny rash will be incomplete without a full Lyme co-infection screen.
Ed Masters MD like all LDMDs is not afraid of controversy. He pointed out the official inanity in failing to recognise Lone Star ticks as carrying Lyme disease. Bb has not been found in Lone Star ticks but EM and a syndrome similar to chronic Lyme disease do occur after Lone Star tick bites. Comment - Surely it will not be long before the agent (already referred to as B. Lonestari) causing ‘Masters’ or ‘STARI’ disease will be proven.
The Lonestar tick was also the focus of Susan Little DVM. She has collected data from her veterinary practice which supports the notion that Lone Star tick carried disease is a major problem for the white tailed deer population and by inference the public. The ways in which Lonestari Lyme differ from conventional Lyme have yet to be determined. In the meantime why not just Lyme?
Working alone and despite being in full time practice Daniel Cameron MD has performed a double blind study to examine the possible benefit of repeat antibiotic treatment for Lyme patients. Benefits to patients in terms of their improved functionality following repeat treatment were shown. Comment - I hope it will not be too long before it will be considered to be unethical to carry out studies such as this but in the meantime the requirement for so called evidence based medical practice means that they must be carried out. (I say so called because all practice should be evidence based – it is the level or strength of evidence which is scrutinised)
Continuing with clinical trials Brian Fallon MD presented the John Drulle Memorial Lecture. The results of a trial which is big and meticulously designed were presented. Comment - Watch this space because once published this work should rock the medical profession. The study elegantly demonstrates that re-treatment with antibiotics does benefit Lyme encepholpathic patients.
It is unlikely that antibiotics are going to be the full answer to Lyme disease. All manners of intervention may help and Dr. Richard Brown MD and Daniel Kinderlehrer MD gave a long list of alternative therapies which may help patients with any chronic debilitating condition.
Returning to antibiotics Joseph Burrascano Jr MD presented a case of chronic Lyme disease where the patient failed to recover despite lengthy combination therapies. The patient did improve after a course of Levofloxacin and Dr. Burrascano postulated that the he may have been treating a new as yet unidentified Bartonella like organism.
In the ILADS conference Raphael Stricker MD presented the results of a study of re-treatment of 174 adults with chronic Lyme disease with a combination of Clarithromycin and Cefdinir. This observational study showed patients benefited from such a combination but no comparisons were made and it was acknowledged that different combinations of antibiotics will continuously need to be examined in the future.
On the topic of combinations Azoles may become a recommended part of future treatment strategies. So suggested Stephen Phillips MD. He has been researching the properties of this fascinating group of compounds some of which are already widely used in medicine. Some are used as anti-fungals but many have anti-Borrelial properties in addition. Reference was made to a European study by Schardt published last year where fluconazole appeared to help Neuroborreliosis patients. Another space to watch.
Richard Horowitz MD presented an overview of co-infections and reminded us just how many Tick Borne Diseases there are. Overlooking co-infections was suggested to be a reason for many of the treatment failures in chronic Lyme disease.
Ginger Savely RN talked about the topic of Morgellons. These are skin lesions which are commonly dismissed as dermatitis artefacta or lesions caused by delusions of parasitosis. The lesions are usually antibiotic responsive and are commonly associated with positive Lyme tests. Comment – Erythema Migrans (EM) may be multiple and of variable morphology and may ulcerate. Could Morgellons be a form of EM?
Christine Green MD and Joseph Burrascano MD spoke about Lyme Disease treatment in their practice. With massive clinical experience behind them tips were given on when it might be advisable to increase treatment (ramp up) or decrease treatment (clamp down).
Patricia Smith, president of the Lyme Disease Association of America, gave an update on the politics. The news is good with activity in many states. Doctors who practise in Lyme in the states will have a little more protection and it is particularly noteworthy that in New Jersey the State Board of Medical examiners contacted the LDA in a search for Lyme specialists. Again in New Jersey bills have been passed which should help to stop Insurance companies refusing to fund treatment for Lyme patients.
Finally the LDA are challenging the CDC. The LDA are attempting to use new legislation to prevent the CDC from publishing (on the web) guidelines for clinical use which have not been peer reviewed.
Dr. David Owen