Mis diagnosed as Fibromyalgia, ME/CFS, Musculoskeletal Disease,Poly Myalgia Rheumatica - significantly improved when treated for Lyme Disease.
Perhaps more aptly described as Multi-Systemic Infectious Disease Syndrome - MSIDS.
Tuesday, 27 October 2015
BARTONELLA- DOCTORS TREATING NOW- POLICY MAKERS FORGETTING THEY NEED TO DO THE RESEARCH
Published on Oct 14, 2015
Dr. Mozayeni talks about Bartonella as one of the major co-infections of Lyme disease. It's more prevalent than Lyme, as there are many more ways to contract the disease (eg. flees, cats). In a study, that Dr. Breitschwerdt and himself published in The Journal of Emerging Diseases, about 60% of Lyme patients tested positive for Bartonella. Dr. Mozayeni also talks about the importance of looking at Biofilm when treating Lyme, Bartonella etc as biofilm can harbor many of these microbes and be the cause of many symptoms.
Dr Robert Mozayeni was treating patients with Lyme Disease in a Lyme endemic area and developed a partnership with veterinarian Prof Ed Breitschewerdt.
A partnership of One Health with MD's working with Veterinarians.
Dr Mozayeni started sending blood samples to Prof Ed Breitschwerdt to be tested for Bartonella, over 20% were positive - more than any other in any patient group, including high risk veterinarians.
Dr Mozayeni subsequently published a paper (see above link.) up to 62% of patients had significant proof of laboratory testing for Bartonella - some had failed Lyme testing - some had psychiatric symptoms.
I see Bartonella more prevalent than Lyme and while Lyme is a big problem, Borrelia meaning Lyme = Borreliosis. I think that the Bartonella is a much bigger Public Health problem over all, because there are more ways to get Bartonella than even Borrelia, including other insects- fleas and cats.
There are germs in the environment, the insects carry the germs just like all other animals, farm animals and rodents. The more you are exposed to these things the more likely you pick up these infections and so it's great to be in nature, but you being in nature also means being with the microbes and so the risks are there and they are poly microbial. So we have to start thinking about these single germs. We need to think each germ we know about is representative of a broader group of germs and we need to start looking at a Microbiome - look at all the germ genes. So as of this year you may get whole gene sequencing for about $1000 and it used to be millions of dollars 10 years ago.
( Short discussion on possible further developments)
We realise when we talk about Lyme disease it is a much bigger set of microbes and the public refers to all of that as Lyme Disease, but that confuses definitions and creates controversy, because the medical definitions are very narrow, the public definition is a social networking definition - so even patients when told they have Bartonella will still call it, when they tell their friends they have Lyme Disease.
Now for example Norvect is named after Vectors. ILADS is Lyme & Associated Diseases. So these groups started very narrow with Borrelia so now they are broadening their view and I think that in general the medical community is seeing this too. For example we know now that it is scientifically established that Atherosclerosis is due to chronic infections in the vascular system. Some of it will turn out to be Bartonella some of it will turn out to be other germs. Some of it is from Bio films that have been produced from protozoa and then the Bio film gets contaminated by microbes and the body can't clear it because the biofilms are a physical barrier to the immune system. So we are now realising and appreciating the role of biofilms. If you search Pub med 25000 on biofilms since 1975. But if you search Biofilm and Lyme there have been 8 publications in just the last couple of years. So there is a massive awareness of biofilm problems but clinically no one really looks at it.
We have started a biofilm lab in January 2014 and we have now measured 400, 500 specimens and I can tell you the biofilms are a big problem and they are directly responsible for many symptoms and they harbor microbes. So all of the talks we have about all of these specific germs are still incomplete because you have Biofilms in the picture of biofilms an example of biofilms is the layer that thrombus - lines the blood vessel which then causes inflammation which can lead to atherosclerosis. So even Atherosclerosis has now been recognised as a chronic infection.
In many chronic illness we are realising they have an underlying infectious cause, you know maybe MS maybe RA so there are are areas where people have always wondered but now we are going back with better tools and searching again.
People have misunderstood and confused symptoms with diagnosis so when you call something Fibromyalgia it's just a set of symptoms it is not a diagnosis. If you call something Chronic Fatigue it's only a set of symptoms it is not a diagnosis. In fact there are few things in medicine where the name of the disease is actually a diagnosis and by that I mean a diagnosis, as actually identifying a root cause. So no matter what you call it you have to realise that everything we do with medicine is a classification system. To try to understand things we classify it and we may classify, but all the classifications may have to be considered temporary until we find a root cause.
So when you are a sick patient and you get a label of say Fibromyalgia you have to ask yourself what causes Fibromyalgia and there's research that looks at describing Fibromyalgia better, and there's research that may seek to test and find an underlying cause of Fibromyalgia. So when you get to a root cause you have a chance of being able to reverse.
So most physicians will label it and do whatever the guidelines say for that set of symptoms which is a classification not a diagnosis of a root cause and then they've done what they feel was medically prudent and they've satisfied the lawyers and the policy makers and they can go home and sleep that night. But some of us we can't do that unless we fix the problem we don't sleep well at night, we have a patient who is ill and we haven't found the cause. And some of us we try to do that we have to look hard and this is where you end up doing things that are not in the guidelines, because you are exploring new possibilities and if you are trained as a medical scientist you are just naturally curious and once you have learned that medically they can't take it out of you. This is where sometimes the regulatory agencies and the policy makers have problems with practitioners because they are trying to limit what they do to try to regulate, control and reduce costs. So they are practicing statistics on individual patients, that is what they want done, but if you are an individual physician trying to solve a problem for a patient you have to take a personalised approach and you can't apply epidemiology and statistics to the patients - to every patient.
The policy makers have to think in broad terms but practitioners are trying to treat individual patients. So there is this constant tension between the broad approach versus solving an individual case at a time and we were trained to trust our own evaluation more than anything else - more than lab data - but the auditors and the policy makers just want to audit you with lab data, because that's the easiest thing for them to do.
So in a way the doctors in the front line are responsible for taking care of the patient. But the policy makers are forgetting that they are responsible for doing the research that help those doctors take care of the patients. So in my opinion they may be, some of them are forgetting their real mission. But they do it because they think they are doing the right thing, are trying to protect the public and keep the cost down and limit the use of anything that is not fully validated. But for it to be fully validated a paper could take 17-21 years and if you are a sick patient their paradox is it's too bad you didn't live at the right time. Thanks to Norvect for allowing access to the full presentation along with many others at this link http://norvect.no/the-norvect-movies-2015/