Tuesday 29 October 2013

INFECTION - INFLAMMATION - IMMUNE DYSFUNCTION



Dr. Richard Horowitz addressing the crowd at the San Diego 

Lymewalk & Rally, Oct. 19, 2013. He discusses his new book, 

"Why Can't I Get Better? 

Solving the Mystery of Lyme and Chronic Disease."

'How is it possible that an epidemic of tick-borne diseases could be spreading without getting the proper attention? How could patients throughout the United States continue to be desperate for help? To understand the answer to this dilemma, you need to understand the intricacies of Lyme disease and the constructs of the medical paradigm that doctors and health authorities work under.' to read more go to this link here   


WHY CAN'T I GET BETTER?

Solving the Mystery of Lyme and Chronic Disease

Richard I. Horowitz, MD

St. Martin's Press


available here 

Link to Dr Horowitz symptom list here

earlier posts on Dr Horowitz here here and here 

Monday 28 October 2013

CHRONIC LATE LYME DISEASE - DIFFICULT TO TEST, DIFFICULT TO TREAT

The controversy over the late stages of Lyme disease has waged for over 30 years and will continue to do so until we pay attention to the science.

I was having a very quick read through -
UNITED STATES OF AMERICA
DEPARTMENT OF HEALTH AND HUMAN SERVICES
FOOD AND DRUG ADMINISTRATION
CENTER FOR BIOLOGICS EVALUATION AND RESEARCH

VACCINES AND RELATED BIOLOGICAL PRODUCTS ADVISORY COMMITTEE MEETING

Tuesday,
May 26, 1998

(development of a candidate vaccine for the prevention of Lyme disease.)
Link here 

It didn't take long to realise that chronic difficult to treat Lyme Disease and problems with testing were all acknowledged many years ago, just not talked about in guidelines used for treating patients in the field.

Are we the sacrificial lambs in this race for a vaccine? Are the thousands of wasted lives so unimportant to our Health Departments?

These are just a few comments extracted from this report:-


'I think that it is helpful to think about early and late disease. And clearly something happens between early disease, which is easy to treat, and as Dr. Luft points out, if we didn't ever miss it, we wouldn't need a vaccine. But we do miss it. And late disease, where presumably some other pathogenesis is at work because it is hard to treat. But I would think of these as useful rules of thumb. And I don't think that the statistical information is invalidated. I think if we have eradicated the disease early, it doesn't have a chance to occur late and demonstrate a statistical difference.'

 DR LUFT: "The point that I wanted to make in regard to the study is that there is very heavy dependence on serologic confirmation. ***And when we start thinking about the adverse events, it was stated originally when we got the overview of the disease that the disease is really quite protean. And actually the adverse events are very similar to what the disease manifestations are. And if you start to, as I think Dr. Hall was eluding to -- if you start to kind of say well how often do you actually become sero positive, you can start to have a different take on when someone has an adverse event of whether it is disease specific or infection specific versus vaccine specific. And I think that that is an important issue that we have to deal with.***

 DR. LUFT: 'Well one I think very large issue, and I am not sure it is within the purview of this group, is that the sero diagnosis for Lyme disease in the vaccinated patient population has become extremely difficult and very expensive as a result of this vaccine. What is happening is that all current ELISA's will no longer be useful and that we will have to use Western blot, which is a very costly diagnostic test for the primary diagnosis of patients. And I think that there has to be some work done for the development of new diagnostic testing as well as new diagnostic criteria for this particular patient population. It is going to become a very cumbersome and expensive venture.'

 DR. LUFT: 'I think it is important to realize that this vaccine has a built in adjuvant in it. I mean, it is a lipoprotein and I am not sure how many vaccines are out there that are lipoprotein that has a variety of immunogenic activity in itself and how that might affect either the fetus or the reproductive status of the individual is really unknown. So I would be very -- I would approach that whole issue as to vaccinating someone with a lipoprotein with real caution. Just because we don't have any data in that regard.'

Our doctors have been well and truly duped by those who have disseminated false information and colluded to distort the science in the interests of what? Money, vested interests, vaccines reputation?

Thanks to Tick Talk Ireland for this excellent information here 



Wednesday 16 October 2013

PUBLIC HEALTH ENGLAND - LYME DISEASE CONFERENCE

PUBLIC HEALTH ENGLAND HOLDS A CONFERENCE ON LYME DISEASE.
Details of conference program and attendees found here

A historic event - patients and patient advocate groups have been asking Department of Health for open dialogue over many years on the subject of Lyme Disease.

Conference slides from presentations from PHE here 

My notes.

I thought it was a good positive start of dialogue.

The Countess of Mar gave an excellent and enlightened introduction - clearly she is well informed about this disease and working hard to keep doctors involved with the process of working with patient groups and patients.

Dr Tim Brooks (RIPL Porton Down) spoke enthusiastically about ways forward with testing and looking at improving tests - his colleague went into detail about various tests available.

Stella Huyshe- Shires  chair of Lyme Disease Action did us proud making some very salient points forcefully - some may have been lost on the doctors in the audience who still think they have all the answers but hopefully by the end of the meeting some of them may realise they need to be more open minded talk and listen. Engagement - patient voice at center of every decision. Mentioned Ad Hoc International group that has held progress back -'This battle cannot be won on scientific front we need to mount a socio political offensive' Although patients appreciated Stella highlighting this remark my guess is that it was lost on the medics in the audience -(keep repeating it though)

Wendy did a presentation about awareness and educational work that BADA UK do and the need for much more, pointing out some of the problems of patients depending too much on internet and being mis led by 'Snake oil' medicines.

Dr Roger Evans Raigmore seemed to have a very open mind (recognises sero negativity I talked to him during the break and he pointed out to me that even with low % seronegativity  that could still be a significant number of patients) Currently involved with project with 18 surgeries in Scotland looking at all cases of LD even clinical diagnosis and EM to get a feel for the real figure which he believes is between 5 and 10% that of serology. Also looking at ways of improving testing and looking at more isolates - query Miyamotoi.

Ian Farmer GP from Scotland was greeted with a round of applause when he dismissed the testing as rubbish. He practices in an area where Lyme disease has high incidents which he finds in his patient population - pointed out the area is a popular tourist area - how many return home infected and how do they fare with diagnosis and treatment? One interesting point he made was that it was about 1986 when EM rashes started to appear and talking with locals it appears no reports of EM's prior to then.

Dr Miller talked confidently about the research at the Liverpool clinic details on LDA website previously discussed this research here - he repeated IDSA view with great confidence and I suspect it will take much much more before his views are changed - he believes there is no persistence of this organism beyond a short course of antibiotics and only those who meet epidemiology, clear objective symptoms of Lyme( mainly neuro such as Bells Palsy - as we don't get much arthritis in UK!!!) and has positive serology have Lyme Disease.

Dr Dryden impressed me both in presentation and answering my and others questions and in chats during breaks. I would recommend seeking consultation at his clinic - clinic is open to December in a trial capacity - if we don't use it we may loose it. He tells me that he intends following patients over time and keeping records he also says that if patients go elsewhere say to US Lyme docs he will still follow and may be prepared to discuss cases with Lyme Doctors ( not necessarily treating patient himself but until he talks to specialist doctors he won't learn).He agreed he might work with some of our Lyme friendly GP's at his clinic. Clearly he will work closely with Porton Down RIPL on a range of testing to try to establish underlying causes - biopsy lesions, monitor and evaluate serology over time,will encourage urgent referrals from doctors, and refer on if necessary to other specialists.

Jackie Duggan very interesting on testing methods and different tests. Plex-ID may start being used next year and can be primed to test for 8000 pathogens a variety of borrelia strains/species, Bartonella, Babesia etc

At that point I gave up taking notes.
Remainder of talks were interesting but nothing outstanding beyond what many of us have heard before.

Lots of useful questions and good answers far too many to list here.

Most important question for me was that PHE endorse LDA website thus doctors can go there for information- seemed to be accepted - time will tell.

Countess of Mar did an excellent summing up once again showing her thorough understanding of this disease - as much as any of us can in view of the many uncertainties.

I look forward to seeing what information from the presentations is available and what others perceptions were.

I felt after years of frustration and disappointment this was the start of something better, we deserve so much better and NHS budget could be cut reducing wastage on so many unhelpful consultations which was a point that was taken on board too.

Public Health England Health Matters blog, Conference wrap up - Lyme Disease and comments here

A more detailed summary can be found on Nicola's blog here the devil is in the detail so well worth reading.

Lyme Disease Action feedback here 

Thursday 3 October 2013

BORRELIA BURGDORFERI (LYME DISEASE) BIOFILM






From Dr Alan MacDonald -

Borrelia biofilms are now proven to constitute expressions of Human disease in multiple sites:
Skin: Borrelia lymphocytoma, Heart Valve: borrelia Endocarditis, Bone: borrelia Osteomyelitis

In the Ixodid tick gut: biofilms of Borrelia are established and provide a survival mechanism for the
infectomes of Borrelia between the Blood meals which provide the Only nutrition to the Borrelia.
Blood meals taken by a tick may be spaced at one year intervals.

Biofilms of borrelia are Communities. Within each biofilm Community there is microbe Specialization.
Shape shifting of borrelia between spiral, to cystic, to granualr borrelia is confirmed my microscopic
inspection of Living borrelia biofilm communities and corroborates the Specialization of individual
borrelia because of obvious differences in Shape. Biochemical specialization, quorum sensing, quorum Quenching, lateral DNA transfers between members of the biofilm community [horizontal DNA Transfer]
production of self-generated extrcellular matrix materials [ Outer surface sloughed proteins,
and extrusion of DNA into the Matrix ( extracellualr DNA [eDNA]) :: These are all in play in Borrelia biofilms.

Biofilm infections are ALWAYS CHRONIC INFECTIONS.
Biofilm infections are Never Cured by simple short course Antibiotic Therapies.

Please follow the link ( You Tube above) to view the Borrelia biofilms from the Laboratory of Dr Eva Sapi, University of New Haven,
West Haven , Connecdticut. The video is in High Definition , with a resolution of 1080dpi, so the images on
your computer screen are fully equal to the images as seen through the microscope. The "green glow" in the images is due to the insertion of Green fluorescent Protein (GFP) into borrelia burgdorferi to enable sharp contrast between
individual biofilm community members and the intervening extracellular matrix investment material

Borrelia Burgdorferi Biofilm - Live Microscopy Video


Published on Oct 2, 2013
Eva Sapi, Ph.D., Associate Professor of Biology and Environmental Science at the University of New Haven, hosted my visit 2008. She collaborated with Dr. Alan MacDonald, retired pathologist and Borrelia career researcher, to discover and prove that Borrelia creates biofilms, as microbes have been doing for three billion years.

Using video microscopy, Dr. Sapi's grad student David Luecke explains in this video how DNA from the Borrelia burgdorferi strain B31 "fluoresces" or glows an eerie green. Any green life forms you see in their various states originate from the B31 strain of Borrelia -- one of 100+ strains known.

REMINDER: Most Lyme disease tests only test for ONE strain of Borrelia! Igenex, Advanced Labs and Spirostats will test for more than one strain, however.

Prior to Dr. Sapi's pioneering efforts researchers dismissed Borrelia biofilms. As well, Borrelia biofilm would ruffle the feathers of the IDSA, NIH, CDC and (most) insurance companies, as it would spell out an obvious scientific syllogism for neuroborreliosis -- known previously as chronic Lyme Disease.

Later, they learned that Sapi et al were correct -- that the standard BSK media could be enriched with collagenase (which humans have abundantly) and this media proved to be ideal for growing spirochetal, slimy communities!

This video shows four different life forms alive in the community: spirochetes, cysts, granular and of course the biofilm community itself. Biofilms protect the microbial community from the immune system and antibiotics, which enable infections to live indefinitely inside us.

Hence, chronic Borreliosis (chronic Lyme disease).

Note: you may have seen this before in low resolution. I offered it to the producers of Under Our Skin years ago (free of charge). In this HD version, I included some amazing new high res AFM photos and additional explanations. Special thanks to David Luecke, who provided these slides, and of course to the Sapi-MacDonald team!

This video was produced by The Arthroplasty Patient Foundation. Please offer an any-sized, tax deductible donation at this link:

http://www.arthropatient.org/about/do...

Our specific library of current intelligence on biofilms:

http://www.biofilmcommunity.org/

Our documentary on biofilms, Why Am I Still Sick, now available in French, Spanish, Simplified and Traditional Chinese:

http://www.whyamistillsick.com/

Wednesday 2 October 2013

IGENEX TESTING EXPLAINED BY BOB GIGUERE - FOR LYME DISEASE



Lyme Disease Testing: Bob Giguere from IGeneX


Published on Jul 8, 2013

This 27 minute interview focuses on Lyme Disease testing. By now, many of us have learned that there are 100 strains of Borrelia -- but 99% of all testing on humans is based on testing ONE strain -- the B31 strain!

How and why this continues to be ignored is insane and unethical. In the meantime, listen to my interview with Bob Giguere from IGeneX as we discuss:

- the transmission of Lyme Disease
- coinfections
- different vectors of Lyme Disease
- how and why most tests are inaccurate
- chronic Lyme Disease
- finding a doctor

Don't forget to watch my other interviews on the ADRSupport channel, especially the ones with Dr. Alan MacDonald, Lyme Disease Researcher and expert!

This video was produced by The Arthroplasty Patient Foundation. Please offer an any-sized, tax deductible donation at this link:

http://www.arthropatient.org/about/do...


Another interesting presentation from Bob Giguere can be heard here