LYME DISEASE: A COMPREHENSIVE APPROACH TO AN EVOLVING THREAT

Full Committee Field Hearing - Lyme Disease: A Comprehensive Approach to an Evolving Threat

US SENATE HEARING here 

Amiram Katz, MD – Written Testimony

Lyme disease is a continued and escalating public health issue.

A major problem in assessing the magnitude of this serious public health issue is the undiagnosed cases.

 The Diagnosis and Treatment of Chronic Lyme disease (AKA: post treatment Lyme disease)

It is clear that more accurate tests are needed and more so, a test that will tell us if the infection is active.

What are the possible explanations of developing “chronic” Lyme disease?

Persistent Lyme infection. In spite of the IDSA’s treatment recommendations stating that two weeks (range 10 – 21 days) of oral antibiotics (doxycycline, amoxicillin, or cefuroxime), are sufficient to treat Lyme disease diagnosed by ECM (Bull‘s eye) rash, there is culture supported data, suggesting otherwise

Persistent presence of non infective Lyme spirochetes after adequate antibiotic treatment leading to an ongoing disease.

Persistent/ untreated infection of other tick borne agents, transmitted by the same ticks (“co-infections”)

Re infection. Living in a Lyme endemic area, where about 50% of the tick bites go undetected, unnoticed re-infection can result in a “chronic” picture. This includes the “co-infections”.

Treatment

When facing “chronic” Lyme, with an autoimmune flavor, one should consider treatment with a combination of hydroxy chloroquine and a macrolide.

WHEN THE DOCTOR GETS SICK - THEY GET IT

A recent discussion on Eurolyme was about when a doctor or their loved one gets sick with Chronic Lyme Disease - it seems that only then is a paradigm shift in how they view the disease.

I have heard the comment a number of times : 'You don't get Chronic Lyme until you get Chronic Lyme' so true.

A recent response in the BMJ from  a Doctor was highlighted on the Lyme Disease Action website here 

'What have i learnt? I have learnt to take a good travel history and that guidelines are just that - guidelines, and not always applicable to every patient and that clinical assessment is just as important'.Caroline J Rayment, GP partner.

Link to the BMJ here

It was with interest I read the following presentation from the Lyme Disease Action conference 2012  here  


The Neuropsychiatry of Lyme disease: Case presentation
Dr Sandra Pearson, MB ChB, MRCPsych Consultant Psychiatrist and Medical Director www.LymeDiseaseAction.org.uk Link here 

There are a growing number of doctors that have been touched by Lyme but even so their colleagues are slow to pay attention, I remember one doctor saying that despite the number of doctors and consultants they were in touch with they had to travel to US from UK to get appropriate treatment.

How sad that medicine is such a slow grinding process even when innovative treatments are proving successful.

Hopefully with more awareness of Lyme Disease people will seek early medical treatment and avoid a chronic illness developing. 


In the meantime there will be a few more thousand patients to every Doctor that gets sick with Chronic Lyme Disease so here's hoping doctors start listening to all the available research sooner rather than later and realise as  Caroline Rayment points out 'guidelines are just that - guidelines, and not always applicable to every patient and that clinical assessment is just as important'

PATHOLOGY NEEDED TO SHOW PERSISTENCE OF BORRELIA

Below is an extract from BettyG's Blog written by Tom Grier - to read the whole posting click here 

'The experts got almost everything important about Lyme disease wrong from the very beginning, and never once tried to apologize or correct their mistakes. 

 So I ask again: Why do we call them Lyme experts? 

They should be held accountable for mistakes that either came from arrogance, incompetence, or a purposeful choice to mislead us.

Personally I believe it to be all three. 

But I am not asking anyone to just accept my arguments based on history or my opinions.

I am asking the entire world to base an opinion on the basis of pathology. 

Scientists must look for the persistence of Borrelia species in the human brain after antibiotic treatment. 

A study should include no less than 1000 human brain autopsies world-wide on Lyme patients, dementia patients and MS patients. 

We need to use state of the art research tools to look for the survival of the bacteria in the human brain. 

We must use at minimum the following tools: 

Fluorescent-antibody stains for Borrelia, Silver-Stains, RNA-PCR for a generic Borrelia markers that are not species specific, but can detect any Borrelia species, thin section microscopy, the Bosner-Steiner method of staining and brain tissue analysis (this allows many cell layers to be analyzed instead of just one) tissue culture, 
PCR and antigen captures tests of Borrelia antigens. 
And for heavens sake: don't let the old school "Lyme-Experts" have a cent of the research monies to do this study; 
keep the CDC out of it, 
and don't allow corporate health organizations to contribute funding. 
Use private monies that are untainted by conflicts of interest.' 

Tom Grier

There are more interesting lectures by Tom Grier posted in the right hand column of Looking at Lyme Disease blog.

LYME DISEASE CHALLENGES

Well done to Voice America for this radio interview :- 

Lyme Disease Challenges for Family Caregivers and Family Members

An excellent  interview on Family Care givers unite - click here

 Jim Wilson, President and founder of the Canadian Lyme Disease Foundation, is himself a victim of Lyme disease and the father of victims of Lyme disease. Janet Sperling is a trained entomologist whose 15 year-old son fell desperately ill. After months without a clear diagnosis, she and her husband confronted the possibility of Lyme disease. Jim and Janet discuss the serious challenges that Lyme disease creates for children, adults, family caregivers and families. They describe most important things that family caregivers, families, and family members should know about the disease, and where they can they find information about services and solutions for the challenges. They discuss communications with doctors which, they stress, should involve family caregivers giving information to doctors as well as family caregivers taking the advice of doctors. They identify the responses they want to see from healthcare systems and governments and they share their messages for family caregivers.

DO YOU HAVE SYMPTOMS THAT MIGRATE - Arthritis, Myalgias, Neuropathic pain inc tingling and numbness?

Do you have symptoms that migrate? Such as Arthritis, Myalgias, Neuropathic pain (inc tingling, numbness)

Is your pain influenced by hormonal cycle ? ( worse flairs before, during or after cycle) - sorry to the men

Is your pain resilient to 

standard treatment modifiers (NSAIDS, SSRI's, Neuroleptic mediators, Narcotics)?

Does antibiotic use increase or decrease pain (ie. Jarisch-Herxheimer reaction)  given for such as sinus or UTI infections ?

Is you pain associated with multi-systemic symptoms?

Then you are probably looking at a Muti-Systemic Infectious Disease Syndrome - MSIDS

Watch this presentation by a leading doctor in this field Richard I. Horowitz, MD at a hearing 

hosted by Congressman Chris Gibson

 - starts at 18 mins in .

NB. RA and Lupus Rheumatoid factor correlates with antibody titres against Borrelia - Lyme Disease, something most Rheumatologist don't yet recognise.

In an earlier presentation By Dr Horowitz at the 2010 London ILADS conference DVD available through Lyme disease Action charity  Dr Horowitz mentions that Plaquenil plus  Minocycline often used in treatment for RA patients as a disease modifier regime - actually begs the question are they treating an underlying infection perhaps Lyme Disease and Mycoplasma.

I posted links to this hearing previously, Dr Horowitz presents in Part 1  here   

Watch live streaming video from skidmorevideo at livestream.com