Friday, 30 March 2012


New research just published looked at antibodies for Lyme Disease in deer in England and Wales and found 23% of the deer had antibodies for Borrelia.
Link here 

Borrelia burgdorferi Serosurvey in Wild Deer in England and Wales. 
Alonso S, Márquez FJ, Solano-Gallego L. Source 1 Veterinary Epidemiology and Public Health Group, Royal Veterinary College , Hertfordshire, U.K.

Abstract Lyme disease is the most common vector-borne disease in the United Kingdom and its incidence has been increasing in recent years. However, limited information is available on its epidemiology and dynamics in the U.K. A survey in wild deer to investigate the presence of antibodies reactive to Borrellia burgdorferi was conducted to obtain initial information on the distribution pattern of the spirochete in England and Wales. Samples from roe deer (n=604) and red deer (n=80) were collected in eight different locations. An ELISA protocol was developed to identify antibodies reactive to B. burgdorferi s.l. Seropositivity was investigated by location of sampling, over time, and in relation to the level of deer tick infestation. Twenty-three percent of animals had a positive serology. Seroprevalence varied according to location with the southern forestry districts showing higher seroprevalence rates. One northern location showed an unexpectedly high proportion of positive deer. Variations in the proportion of positive animals were also observed over time. Tick load was higher from spring through autumn, and its relation to seroprevalence was compatible with higher tick infectivity during the spring and summer months. This study represents the first assessment of distribution of Borrelia antibodies in deer in the U.K. and identifies areas that are potential hot spots for human Lyme borreliosis. Targeted epidemiological studies should be conducted to evaluate the actual disease risk for humans.


What I would like to see is more research in line with what Faith Smith produced using dogs as sentinels here So many of us with Lyme Disease have dogs or cats that bring ticks into our homes - often as in my case unaware that ticks can latch onto us or pass on Lyme Disease or up to 30 different infections (according to Prof Luc Montagnier in a recent TV interview I posted earlier).

Monday, 26 March 2012


Lots in the news about Lyme Disease and other tick borne illnesses in Australia

Battle for Laura: doctors take on NSW Health over girl's crippling disease here 

Ticking Time bomb here

Lyme disease mystery deepens here 

Lyme Disease Outbreak here
( pity the presenter mistakes Lyme Disease and refers to it as a virus when of course we all know it is a bacteria plus other co infections)

Pity our UK media don't take time to get involved more in this controversial illness - just imagine how many more patients could be helped with a perfectly treatable disease if only it is diagnosed and treated adequately.

Thursday, 22 March 2012


From :-


'Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.'

If you haven't already signed this petition please do so.

Go to here to sign the petition.

This petition is open to everyone the World over because sadly all our Health Authorities use these outdated guidelines as their own.

In the words of Alan MacDonald MD, known for his pathology work with Borrelia, this was recently posted on Lymenet Europe here
(some of you may be aware that Dr MacDonald had to retire due to an Alzheimer's like illness but I am pleased to add that he is doing well on medication and with regular doctor visits, certainly his recent contributions to the debate about Lyme Disease on Lymenet Europe are valuable and fascinating)

'Proficiency testing is one arm of "Maintenance of Certification". That maintenance exists because the "half life" of medical ( and scientific) information is finite. Half life comes from the Decay of levels of radioactivity for an isotope. Medical half life of information means that one half of the information which was "correct" is either changed or removed or redefined in the half life interval. Years ago, it was estimated that medical information had a half life of 5 years. That interval has shortened, due to the rapid pace of entry of new information, based on new tests, drugs, and understandings of disease mechanisms. Medical half life information "decay" is now closer to 2 years.' etc--

 'Now if we agree that the Medical information Half life curve is less than 5 years, and that this is the inevitable consequence of new information entering the medical arena, I pose the following Rhetorical question. Why not re-write the 2006 IDSA guidlines for an updated 2012 version? The medical textbooks are outdated every 2yrs to 3 yrs. Re-writes are necessary. We now live with the IDSA 2006 guidelines. These guidelines came up for governmental review in 2011. It was voted to extend the 2006 IDSA guidelines- WITHOUT REVISION OF A SINGLE SENTENCE for the next 5 years. This decision is at variance with what constitutes good medical practice in every specialty of medicine. 

I believe in proficiency testing. I believe in Mandatory re-writes every 2-3 years. I believe in lifelong learning.

Best to you,
Alan B. MacDonald MD

Wednesday, 21 March 2012


Since 2001 the Infectious Diseases Society of America (IDSA) has been recommending preventive treatment of a single dose of doxycyline for tickbites under certain narrow conditions:- The IDSA recommends preventive treatment with antibiotics only in people who meet ALL of the following criteria:
 - Attached tick identified as an adult or nymphal I. scapularis (deer) tick
- Tick is estimated to have been attached for ≥36 hours (based upon how engorged the tick appears or the amount of time since outdoor exposure)
- Antibiotic treatment can begin within 72 hours of tick removal
- The local rate of tick infection with B. burgdorferi is ≥20 percent (known to occur in parts of New England, parts of the mid-Atlantic states, and parts of Minnesota and Wisconsin)
- The person can take doxycycline (eg, the person is not pregnant or breastfeeding or a child <8 years of age)

Piesman et al. have just published a new article concluding that if the treatment is given as little as 24 hours after the bite, only 47% of the mice were cured. 

Piesman also concludes that "Prophylactic treatment was totally ineffective when delivered ≥2days (48hrs) after tick removal."

The IDSA recommends treating if * Tick is estimated to have been attached for ≥36 hours (based upon how engorged the tick appears or the amount of time since outdoor exposure) * Antibiotic treatment can begin within 72 hours of tick removal

 IDSA recommends "If the person meets ALL of the above criteria, the recommended doseof doxycycline is a single dose of 200 mg for adults and 4 mg/kg, up to a maximum doseof 200 mg, in children ≥ 8 years"

In 2004 Zeidner et al. noted that the "sustained release" doxy was curative, but regular doxy only 43% effective. [Antimicrob Agents Chemother. 2004Jul;48(7):2697-9. Sustained-release formulation of *doxycycline* hyclate for prophylaxis of tick bite infection in a murine model of Lyme borreliosis.]

In 2008 Dolan et al. reported on the success of 14 days of exposure to antibiotic bait formulations.. Am J Trop Med Hyg. link  2008 May;78(5):803-5. A doxycycline hyclate rodent bait formulation for prophylaxis and treatment of tick-transmitted Borrelia burgdorferi.

Dolan MC link ,
Zeidner NS link ,
Gabitzsch E link ,
Dietrich G link ,
Borchert JN link ,
Poché RM  link;,
Piesman J link
The prophylacticand curative potential of doxycycline hyclate formulated in a rodent bait at concentrations of 250 and 500 mg/Kg was evaluated in a murine model of Lyme borreliosis. Both bait formulations preventedtick-transmitted Borrelia burgdorferi infection in 100% of C3H/HeJ mice (N = 16), as well as cured acute, established infection in mice (N = 8) exposed to bait for 14 days. Spirochete infection was cleared in 88.9% to 100% of infected nymphs feeding on mice fed 250 and 500 mg/Kg antibiotic bait formulations, respectively. These data provide evidence for exploring alternative techniques to prevent transmission of Lyme disease spirochetes.

This month Peisman and Hoigaard note that "prophylactic treatment was totally ineffective when delivered ≥2days after tickremoval." [2 days = 48 hrs] Ticks Tick Borne Dis. link  2012 Mar 13. [Epub ahead of print]

 Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: An animal model. 
 Piesman J link , 
 Hojgaard A link

Clinical studies have demonstrated that prophylactic antibiotic treatment of tick bites by Ixodes scapularis in Lyme disease hyperendemic regions in the northeastern United States can be effective in preventing infection with Borrelia burgdorferi sensu stricto, the Lyme disease spirochete. A large clinical trial in Westchester County, NY (USA), demonstrated that treatment of tick bite with 200mg of oral doxycyclinewas 87% effective in preventing Lyme disease in tick-bite victims (Nadelman, R.B., Nowakowski, J., Fish, D., Falco, R.C., Freeman, K., McKenna, D., Welch, P., Marcus, R., Agúero-Rosenfeld, M.E., Dennis, D.T., Wormser, G.P., 2001. Prophylaxis with single-dose doxycyclinefor the prevention of Lyme disease after an Ixodes scapularis tick bite. N. Engl. J. Med. 345, 79-84.). Although this excellent clinical trial provided much needed information, the authors enrolled subjects if the tick bite occurred within 3days of their clinical visit, but did not analyze the data based on the exact time between tick removal and delivery of prophylaxis. An animal model allows for controlled experiments designed to determine the point in time after tick bite when delivery of oral antibiotics would be too late to prevent infection with B. burgdorferi. Accordingly, we developed a tick-bite prophylaxis model in mice that gave a level of prophylactic protection similar to what had been observed in clinical trials and then varied the time post tick bite of antibiotic delivery. We found that two treatments of doxycycline delivered by oral gavage to mice on the day of removal of a single potentially infectious nymphal I. scapularis protected 74% of test mice compared to controls. When treatment was delayed until 24h after tick removal, only 47% of mice were protected; prophylactic treatment was totally ineffective when delivered ≥2days after tick removal. Although the dynamics of antibiotic treatment in mice may differ from humans, and translation of animal studies to patient management must be approached with caution, we believe our results emphasize the point that antibiotic prophylactic treatment of tick biteto prevent Lyme disease is more likely to be efficacious if delivered promptly after potentially infectious ticks are removed from patients. There is only a very narrow window for prophylactic treatment to be effective post tick removal. 

In the past 11 years, the misinformation has spread widely on the internet. Your mission, should you choose to accept it, is to seek out sites displaying the inaccurate information and ask them to correct it. Let's see if we can turn this around before another 11 years goes by. You will be saving lives.

Thanks to Phyllis Mervine  Lyme  for this information

Thursday, 15 March 2012


Lyme disease
Autism and Borrelia 
(Translation of TV interview posted previously here )

Meeting Professor Luc Montagnier
March 2nd, 2012 at the UNESCO, Paris (France)

Professor Luc Montagnier, biologist
virologist, Nobel Prize for medicine in 2008.

In 1993 he created a Foundation for Aids Research and Prevention
with the UNESCO.

Today he is using new technologies to explore chronic infectious diseases.

In the 2nd part of an exclusive interview for, he talks about

the bacterial origin of autism and he tells us about an emerging disease:
Lyme disease.

- Are there any other research areas that are not discussed enough

and that you think are important,

that you or other researchers are involved with?

- Chronic illnesses are not only illnesses of elderly people,

they can also affect children like autism for example.

- 150,000 babies and young children?

- Yes in France, and these numbers have been steadily increasing

over the last 20 years

and has now reached epidemic proportions.

Of course many causes have been considered

but what we have observed is that

the infectious hypothesis has to be taken very seriously.

So very often we are detecting bacterial signals 

in the blood of these children,

and more importantly if these latent infections are treated 

with long term antibiotics,

we can cure more than one out of two of these children.

- Tell us about this bacteria Boriali... Borrelia,

some doctors like the chronimed group

claim that 80% of French people carry this bacteria,

it is the same bacteria that causes Lyme disease, right?

...and there is also a connection with autism.

Tell us about this bacteria because quite a few people

are becoming concerned about it.

- The problem is that this bacteria can also give chronic infections.

It is a bacteria normally transmitted by ticks,

and normally it can be cured by a few weeks of antibiotics.

But unfortunately it often becomes chronic

and can affect the joints extremely seriously,

there's also neuro-borreliosis which will affect the brain

and may have neuropsychiatric manifestations.

So it is an illness that has to be taken very seriously

but unfortunately there is a controversy about

whether the infection can be chronic.

Since we are detecting bacterial signals in the blood

of a certain number of patients,

I think long term chronic infection does exist.

And it has to be treated long term.

Are all cases of Lyme disease caused by this

specific bacteria? Probably not.

It is a group of bacteria.

A tick can host up to 30 different bacteria,

so it is the combination of these bacteria which can

lead to the illness, not just Borrelia.

You mentioned autism before,

that's right, in a minority of children we are detecting this bacteria

but it is often associated with serious neurological symptoms

like epilepsy,

and it can be treated in the same way by long-term antibiotics.

But the problem is that it is underestimated by doctors

and often... in addition, tests are not very reliable,

 serological tests.

We prefer to use molecular testing,

that we call PCR tests

which will detect DNA traces of the organism,

and especially our famous technique of "signals"

which will allow us to detect these chronic infections very early.

- It is an illness that is not often talked about

there is no budget for research?

- No that's right.

And it is a global disease, not only in France,

the infection can be found in the whole world,

I don't want to compare it to AIDS but it's almost like AIDS,

in fact this bacteria is a close relative to the syphilis spirochete,

they are in the same family,

of course syphilis is a lot rarer these days

but is has now been replaced by Lyme disease

which is not sexually transmitted but through tick bites

or from mother to child

and there are probably other means of transmission

that we are not aware of.

- In the United States at least there are signs

warning people, there is more prevention taking place,

there is more communication about the illness,

in France people are not warned about this.

- (In the USA) There are very strong patients groups

or groups of parents of affected children

but there is also a lot of controversy

for economic reasons.

In the USA health insurance is private,

there is no public health insurance,

they are private health insure companies,

they question every case,

"is the illness really linked to the bacteria",

"can it be identified in chronic infections".

So there are groups of doctors and insurance companies

who won't agree to pay for the treatment because

the bacteria has not been found.

The antiobiotic treatment will not be paid for by insurance

because the illness cannot be linked to a bacteria.

However things are changing

I too am pushing in the same direction

We are in contact with American associations

that are very involved of course.

- And what reaction do you get in France

when you talk like this? Do you have to say things differently?

- No I say the same things.

Lyme disease is not well known at all,

yet there are areas of France that highly contaminated

it starts with wild animals being infected

by ticks that carry the bacteria

but because of suburban sprawling

wild animals are in closer contact with domestic animals

and with people,

particularly in rural settings where the risk 

is increasing.

- So have you conducted other research on Lyme disease,

other things you would like to tell us about?

- Regarding Lyme disease we have tests that are very accurate

which tell us that Borrelia is not always implicated.

There are similar illnesses which will also be called Lyme disease

for which no Borrelia can be found,

maybe other intracellular bacteria play the same role. 

- Would you like to add something?

Something you would particularly like to stress?

- I would like to stress the need for a new model,

a prevention model.

Prevention is crucial,

yet too little money is being spent on research and prevention.

I suggest that 50% of research fundings be spent on prevention.

Education and information are already playing an important role

but I am suggesting scientific and medical preventative measures.

Much can be achieved by doing this

we have at our disposal very advanced technological tests

but they require validation of course

so research and money is needed

clinical trials cost a lot of money,

changing the way people think is also needed:

changing the way doctors think

so that they are more open to prevention than to treatment

by writing long prescriptions.

We will also need to change the way we all think

so that we take a more active role in prevention

by changing our attitude to prevention,

by getting tested more regularly as I mentioned before

oxidants, bacterial and viral infections, 

these have to be tested regularly,

more so as we age our immune systems become less efficient

not like in AIDS, it is a slow declining process,

in fact sometimes I say that AIDS is simply the extreme decline

in immune function,

aging itself causes this decline in immune function,

what's more our environment like living in cities,

electromagnetic radiations, pollution, etc.

Of course trying to minimize negative environmental factors

as well as changing our attitudes.

Politicians will also have to become aware

they have to think towards the long term.

This new approach to medicine may cost money

(prevention, specialised units, etc)

but in the long term it will bring in money,

it will slash spending

as we won't be faced with the ever-growing costs

of people with Alzheimer's disease being cared for in homes,

of cancer treatment, AIDS treatment,

both involving long-term chemotherapy.

- High time, and I hope your message will be heard.

People listen to you, you know,

many people would like to be in my place right now,

in any case I'll encourage everybody to share this video

with as many people as possible

because all this needs to be heard

and must spread like a positive virus!

- We have new technological means at our disposal

which are not well known yet

but that medicine must take into account.

- Hmm, hmm hmm hmm hmmm.

Thank you very much.

("Une ordonnance pour la France" by Frédéric Bizard, preface by professor Montagnier,

is a book on the topic of public health policies, it openly hopes to influence

the debate in this 2012 presidential election campaign)

Wednesday, 14 March 2012


Congratulations to David Martz, MD the 2011 recipient of the Invisible Disabilities Association Research Honors Award.

In this video Dr Martz touches on his personal story of being diagnosed with ALS (Amyotrophic lateral sclerosis) known in the UK as Motor Neurone Disease or Lou Gehrig's Disease in 2003.

In time he realised that some of his arthritis symptoms could indicate an underlying condition of Lyme Disease although initial testing came back negative. However one test eventually came back DNA positive for Lyme Disease and he was treated aggressively on long term antibiotics making an amazing recovery.

I had the privileged of meeting Dr Martz at the London ILADS conference in 2010 and listening to his personal story - as he described many symptoms I had also experienced I found my self nodding in agreement. My diagnosis was not the same but I was surprised how many of my symptoms were as he described. Arthritis and muscle weakness, difficulties climbing stairs, difficulties lifting even small items, difficulties raising from a chair/bed, difficulties rolling over in bed or walking across a room, swallowing problems of course that just didn't describe that constant unremitting pain.

Dr Martz recovered and opened a clinic in Colorado where with a group of doctors they treated 850 patients with possible Chronic Lyme Disease many of them with a diagnosis of MS (Multiple Sclerosis) Parkinson's and ALS or Motor Neurone Disease.

At the London ILADS conference he discussed his research findings which he is hoping to publish shortly.

From the Invisible Disabilities Association here this is a list of what he is hoping to publish, they need to be disseminated far and wide among patients and doctors dealing with these Neurological diseases :-

8-year follow-up case report of antibiotic-responsive ALS-like illness; 

Objective functional improvement in 15 patients with ALS-like disease; 

Antibiotic-responsive Lyme-like illness in 40 rural Coloradoans; 

Outcomes of 90 ALS patients treated with extended antibiotic therapy; 

Case report of antibiotic response of biopsy-proven pulmonary sarcoidosis; 

Minimal complications of extended antibiotic therapy in 330 patients; and, 

A clinical study of 850 patients treated with extended antibiotic therapy for “Chronic Lyme Disease”. 

Thank you Dr Martz for your work in helping others at a time in life when most of us would sit back and enjoy some peace and relaxation and thank you to your lovely wife for her patience and support in helping you in your efforts.

Saturday, 10 March 2012


Interview in French (with English subtitles) of Professor Luc Montagnier, Nobel Prize for medicine in 2008, on the importance of detecting infections which may be at the root of chronic illness.

Pr Montagnier on Lyme Disease, Autism and chronic infections.

 'Chronic illnesses are not only illnesses of elderly people'

 'So it is an illness that has to be taken very seriously'

'I don't want to compare it to AIDS but it's almost like AIDS, in fact this bacteria is a close relative to the Syphilis spirochete, they are in the same family, of course Syphilis is a lot rarer these days but it has now been replaced by Lyme Disease which is not sexually transmitted but through tick bites or from mother to child and there are probably other means of transmission that we are not aware of.'

He calls for a changes in the way the public, doctors and politicians think about chronic illness and the benefits of changes which although initially costly will in the long term reduce health care costs for such illnesses as Alzheimer's, cancer and AIDS.

A further interview conducted following the first but in English and with slightly different conversation.

Thursday, 8 March 2012


Once again the numbers of Lyme Disease cases tested positive in England and Wales increases this time in 2010 to 905. here

Figures for Scotland were 308 in 2010 here

Remembering that this does not reflect the real figure which could according to Dr Ho Yen of HPA in Scotland be 10x that of the number of cases testing positive.

A possible 12130 cases of Lyme Disease in the UK in 2010 and how many of those were treated adequately? How many were missed like my case and left years with deteriorating chronic illness before a correct diagnosis and adequate treatment was given?

How many of those known cases will be followed to see if all their symptoms have resolved months and years later ? For those who still suffer how many will be told - your two weeks low dose antibiotics has cured your infection - now your symptoms must be something else?

Now we know that Lyme disease infection can persist despite 1 month IV antibiotics plus 2 months Doxycycline in non human primates, will our doctors start listening to sense and whilst our symptoms respond to longer courses of antibiotics continue to treat us and watch how we continue to improve.

Thursday, 1 March 2012


An excellent program discussing Lyme Disease was on the Diane Rehm show.
 listen here
Transcript here 

Dr Paul Auwaerter associate professor of medicine, Johns Hopkins University School of Medicine and clinical director, division of infectious diseases. Johns Hopkins Hospital
Dr. Samuel Shor internist, private practice and associate clinical professor at George Washington University.
Dr. Brian Fallon professor of clinical psychiatry. director, Lyme and Tick-Borne Diseases Research Center. and director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine Columbia University Stephen Barthold professor,department of pathology, microbiology and immunology Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis

Dr Auwaerter attempts to defend the position of the IDSA and Stephen Barthold tries not very hard to convince us that although infection persists after 3 months of antibiotics that doesn't prove they cause disease. Earlier post here about that study.
Dr Fallon and Dr Shor eloquently discuss their experiences with patients with chronic Lyme Disease and as Dr Shor says until science has figured it all out all doctors can do is go off how their patients respond, many but not all respond well to longer courses of antibiotics.

Dr Shor refers to his study on patients with ME/CFS finding that many of these patients met a clinical diagnosis of Lyme Disease he treated with antibiotics and found 88% responded well to that treatment.

I have posted about that research earlier here

I have also posted about Dr Fallon's presentation to the Institute of Medicine Workshop here

Perhaps things are beginning to unfold at last and with the latest research here it is going to be very difficult for the IDSA to maintain their current postion of denial of Chronic Lyme Disease.
An interesting on line chat with Phil Baker can be read in the comments of Lyme Policy Wonk blog here
'Philip J. Baker, Not a M.D., was for ten years the Program Officer for the NIH overseeing Lyme disease research grants. An overwhelming proportion of these grants were awarded to a few favored members of the Infectious Diseases Society of America (IDSA) who authored the controversial 2006 IDSA Lyme disease guidelines.'

The latest two points say it all for me

 Dr. Baker, On the precise definition, I agree with you –especially now that we have so much more information on infective strains, on proteomic patterns (Schutzer), and even on persisters. One could come up with a definition that was far more precise than anything used in the NIH studies today…. I am completely on board. Be precise and let the chips fall where they may. But I think you might agree with me that we are not talking JUST about Lyme disease, chronic, acute or otherwise. The definitions must be precise, but alternatively, here, the net should be cast wide to see what we are dealing with, really. These days you can do high-volume pathogen discovery rapidly and to great precision, something impossible in the days that Klempner did his work. Similar technologies discover chemokines, cytokines, and the like –hundreds of molecules involved in the immune cascades, much of it automated today. Who knows what we might find? But if you are looking for one thing, only, in this situation your hands are tied. This is not 1980, it is not even 2000. We can do much more. I can’t imagine that you really disagree with this –in fact I think that to some degree, it is what you are saying, yourself, cast the net wide. Be precise. I find all the NIH studies vague to one degree or another, and I think we can do better. We can be more precise, more specific, more wide-ranging. It is imperative to do better, because so many remain ill. Whatever the answer, for anyone to claim they see some version of ultimate Truth in the Klempner study is absurd. We must move on. Pam Weintraub

 Hear, hear, Pam. No one should be making sweeping conclusions based on the clinical trials that have been done so far. We need to give evidence-based – not opinion-based – guidance to doctors, including acknowledging where the evidence is inconclusive. Just because chronic Lyme has not been defined does not mean it does not exist. And until the day comes when we have a sure cure for Lyme, we need to give patients choices and let their doctors freely use their clinical expertise.
 Phyllis Mervine