Wednesday 23 December 2015

LYME DISEASE- BRITISH MEDICAL JOURNAL- TIME FOR A NEW APPROACH

Lyme disease: time for a new approach?

BMJ 2015351 doi: http://dx.doi.org/10.1136/bmj.h6520 (Published 03 December 2015)Cite this as: BMJ 2015;351:h6520

Many more questions than answers
Lyme disease is the most common vector borne disease in North America and Europe, with 300 000 new cases in the United States1 and an estimated 100 000 new cases in Europe each year.2 These numbers are likely to be underestimates because case reporting is inconsistent3 and many infections go undiagnosed.4 Climate change may have contributed to a rapid increase in tick borne diseases, with migratory birds disseminating infected ticks.5
Our common understanding of Lyme disease is that a tick bite is followed by the development of a classic rash pattern (erythema migrans). When treated early with a relatively short course of antibiotics, most patients have good outcomes.6 But the standard two tier testing for Lyme disease is inaccurate in the early----

  1. Liesbeth Borgermans, professor
  2. Christian Perronne, professor
  3. Ran Balicer, professor 
  4. Ozren Polasek, professor 
  5. Valerie Obsomer, ecological and environmental risk expert

  6. http://www.bmj.com/content/351/bmj.h6520  


  7. Unfortunately this is not open access but the heading and brief introduction says it all we need a new and open approach.


  8. Sometimes it is the responses which are as enlightening as the initial publications these can be read
  9.  

  10.  http://www.bmj.com/content/351/bmj.h6520/rapid-responses


    From doctors who treat many patients and doctors who struggle to get family members treated and one that interested me from Dr Dryden -
 Consultant in infection and microbiology 
Hampshire Hospitals NHS Foundation Trust & RIPL, PHE, Porton Royal Hampshire County Hospital, Winchester, SP11 6NU 
  1.  'Much research is needed on this group, as outlined in the editorial, but most urgently there needs to be research on diagnosis to establish whether persisting infection is present in some of the patients with persisting chronic symptoms. This will allow the development of more appropriate treatments for this group. It will also save the anguish and confusion that many patients experience when forced to spend money on tests which have not been clinically validated.' 

  2. Do I sense a slight change in Dr Dryden's views? 


  3. What a pity Dr Dryden has recently closed his private clinic for treating Lyme patients which with the help of his doctor colleague was at last making in roads into helping a handful of the many patients, who had been dismissed by their NHS doctors with no medical help for their illness following tick bites.


  4. Time PHE got their act together and opened specialty clinics to learn the best ways to treat these patients.


  5. PHE empty promises could if put into practice save NHS valuable resources for this patient group as well as help alleviate suffering of many thousands of patients.



  6. Prof Perronne has given his views many times at various conferences, published papers and press articles 

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat

Christian Perronne Infectious Diseases Unit, Hôpitaux Universitaires Paris-Ile de France-Ouest, Assistance Publique – Hôpitaux de Paris, University of Versailles – Saint Quentin en Yvelines, Garches, France
  1. http://journal.frontiersin.org/article/10.3389/fcimb.2014.00074/full

Lyme disease antiscience.
Perronne C.
Lancet Infect Dis. 2012 May;12(5):361-2; author reply 362-3. doi: 10.1016/S1473-3099(12)70053-1. No abstract available.
Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS).
Clarissou J, Song A, Bernede C, Guillemot D, Dinh A, Ader F, Perronne C, Salomon J.
Med Mal Infect. 2009 Feb;39(2):108-15. doi: 10.1016/j.medmal.2008.11.012. Epub 2009 Jan 4.

And a Newspaper article Lyme Disease- you may never be rid of it. 

Thursday 17 December 2015

DEVELOPING NEW APPROACHES TO TREATING LYME DISEASE

Previous posts have featured articles from Dr Zhang research http://lookingatlyme.blogspot.co.uk/2015/10/lyme-disease-persister-drugs-dr-ying.html

and Prof Lewis research  on persister cells of Borrelia. 
http://lookingatlyme.blogspot.co.uk/2015/05/borrelia-burgdorferi-lyme-disease-forms.html

 Dr Horowitz has been working closely with these doctors to try to develop new approaches and claims to be having some success such that trials are due to be done shortly.
An earlier post on Dr Horowitz 
http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

So I was very interested to read a summary about a recent presentation from Dr Horowitz at a weekend conference, this is discussed at length on the Lymewhisperers blog 
http://lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/

'Dr. Horowitz and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. Horowitz explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. Horowitz whispered.'

Go to the above link to read more and thank you to Lymewhisperer for sharing this important information with us.

Are Mycobacterium Drugs Effective for Treatment Resistant Lyme Disease, TickBorne Co-Infections, and Autoimmune Disease? 
Richard I. Horowitz* and Phyllis R. Freeman

https://www.jscimedcentral.com/Arthritis/arthritis-1-1008.pdf

Tuesday 24 November 2015

MISLEADING LYME DISEASE FIGURES PHE 2015

Public Health England published the latest figures for 

Common animal-associated infections quarterly reports: 2015
https://www.gov.uk/government/publications/common-animal-associated-infections-quarterly-reports-2015


Lyme borreliosis (Borrelia burgdorferi) Total cases of positive serology in the first 3 quarters of 2015 = 606

 of these 429 were considered to be Acute infections.
Lyme disease (data from the Rare and Imported Pathogens Laboratory, Porton) 
'During the third quarter of 2015, a total of 421 cases of laboratory confirmed Lyme disease were reported, compared with 300 during the third quarter of 2014. Of these cases, 340 were acute (including 30 neuroborreliosis) and 81 were past infections. Of the acute cases, 182 were male (aged 2- 90 years, median 46) and 151 were female (aged 1- 93 years, median 51). Gender was unrecorded for seven cases and age was unrecorded for one case.' 

'Thirty-four (10%) of the acute cases reported foreign travel. The majority of cases had travelled in Europe (n=24), eight had travelled in the Americas, one had been to the Middle East, and one to the Far East. One hundred and fifty-six acute cases reported an insect bite, of whom 145 specified a tick bite. Sixty-eight cases reported erythema migrans as a presenting symptom.'

These figures leave far more questions than answers. -

PHE refer to cases that were not considered to be acute cases as past infection - that is quite misleading because there is no test used by NHS that can say the infection was a past infection. The normal rules of antibody responses do not always apply with Lyme disease - the immune system shows an undulatory immune response in early disease and has not been researched in late disease, although cases are documented of further IgM spikes in later disease as is found in Relapsing fever Borreliosis.

340 acute cases of which 68 reported erythema migrans ie 20% suggest that maybe rather less than the 60% often quoted of people develop a erythema rash
 - but as Lyme Disease Action say in recent tweets
'NB this only lab reports. Aim to reduce this to zero - those with EM should be treated without blood test.'
 '% of acute cases sent for a blood test when they have EM ideally = zero. EM Should be treated w'out test.'
'See lymediseaseaction.org.uk/wp-content/upl under "What needs to be done No, 1" Hope it explains.'

Why are doctors sending blood to be tested when patients have presented with an EM rash? - NHS guidance says to treat, testing is not required and is unlikely to be positive in the first few weeks when treatment is necessary to try to prevent further sequale.

Anecdatol reports suggest that many doctors are not prepared to consider treatment unless they have a positive test result and others have been reported to withdraw treatment even with an EM rash because the test result comes back negative, completely contrary to the NHS guidance.

Estimates of actual Lyme Disease cases are considered by CDC and a previous head of Lyme reference unit in Scotland to be 10x that of serological positive cases
 http://lookingatlyme.blogspot.co.uk/2011/03/lyme-disease-cases-soar-in-tayside-but.html

How blind our governments are to the Economic costs of this disease - http://lookingatlyme.blogspot.co.uk/2015/02/economic-costs-of-lyme-disease-lessons.html 

I posted about the figures in 2011 with information on figures in other European countries to compare how low reported cases in UK are by comparison -why?
http://lookingatlyme.blogspot.co.uk/2012/09/has-health-protection-agency-once-again.html


also earlier figures http://lookingatlyme.blogspot.co.uk/2012/03/lyme-disease-increases-again-in-uk.html

and http://lookingatlyme.blogspot.co.uk/2011/12/concern-over-increasing-lyme-disease-in.html 


Monday 16 November 2015

CHRONIC ILLNESS - TESTING - INFECTIONS - IMMUNE SUPPORT

                   Photo courtesy of Mark Christian

Lifting The Veil II  

at the Academy Of Nutritional Medicine on Sunday 15th November 

Just a brief summary of this excellent conference - the presentations will shortly be available on the AONM website http://www.aonm.org  and a DVD will eventually be available from that website.

Professor B.K. Puri

Discussed ECG 
History - 1887 Augustus Waller first discovered the use of ECG at St Marys London carrying out the first ECG on a dog and then moved to humans. He also mapped the electrical field around the heart and produced a heart graph using PQRST.

Long QT Syndrome is found in 1 in 2500 of the population and can be hereditary.
Can cause rapid heart beat, seizures, respiratory arrest.

All SSRI's ( Selective serotonin reuptake inhibitors) can cause LQT interval.
All anti psychotic medication can cause LQT interval
Erythromycin orally can cause LQT interval a 300% higher risk of death from this than in patients taking Amoxycillin.
Environmental exposure to certain metals eg lead can increase risk of LQT interval.

Discussed Atrioventricular block
He discussed a paper in 1990 written by Dr Allen Steere on a case of AV block leading to death after an appendectomy - which said that Lyme Carditis must be considered especially in young patients with AV block.

Discussed a further cardiac study didn't catch the authors name 20% had right induction delay but after 2 weeks treatment ECG returned to normal.

Dr Monro


Discussed at length food intolerances, allergies and sensitivities under various headings Rationale, Investigations and treatment.

Harboring toxins may need detox procedures
Can't ignore the fact a person who has Lyme had intolerances before infection.
Can have homeostasis working when healthy but can be dragged down by infection.
Need to lift whole thing up simultaneously to lift patient up.
Food sensitivities - historically we all know about this - various intolerances 
Celiac has been associated with schizophrenia and a study found they improved when they couldn't get wheat during the war.
Studies have been done on wheat free and milk free.
In Celiac and in autism cases wheat free diet gave some improvements. 

The Breakspear clinic hold a massive collection of books and papers ( not all found on Pub med)
She recommended a book Not all in the Mind by Richard Mackarness

Anaphylactic shock was first described in 1901 and is an affect of the Autonomic nervous system. It was recognised in 1940 as a histamine release.
Discussed oral tolerances, no mast cells under the tongue so can use that to introduce oral tolerances.
Low dose immunotherapy.
Started with hay fever introduced weaker dilutions and can be used as a vaccine.
discussed two pathways ANS and Lymphocytes.
Emphasized people with chronic infections have allergies and these must be addressed.
Quoted 1/3 of the population had migraine. 1/3 of the population had IBS


Dr Klinghardt 

http://www.klinghardtacademy.com/


Started by giving a tribute to the work of Dr Jean Monro 
He did his thesis on the Autonomic nervous system (ANS) and the immune system, his colleagues thought ANS outdated - it was the beginning of a career in ANS. In Germany growing up he became interested in homeopathy, acupuncture and ANS.
Moving to the US different legal systems only allowed to use his hands so adopted his methodology.

Talks about 3 components
1. Genetic and epigenetic
2. Environmental challenge
3. The immune response to toxins, microbes, parasites.

"The response of the host makes the disease" Lewis Thomas MD -NEJM 1972.

Treating chronic Illnesss he uses 4 principles
1. Basic physiology - exercise, diet, trauma, work and transgenerational physiologies, hormones, vitamins, osteopathy,EMR protection
2. Decreasing toxic body burden- metals,chemicals & Biotoxins from extra and intra cellular matrix, EMR protection.
3. Immune Modulation- up regulating blocked or underactive immune function & down regulating hyperactive ones 
4. Decreasing microbial burden  diagnosisn & treating parasites, mould, viruses,( HSV, EBV etc) bacteria eg Borrelia, bartonella, protozone ( Babesia, toxoplasmosa, omeba)

Stressed the importance of paleo diet and benefits of Japaneese knotweed for long term treatment to keep Lyme at bay. also a need for using antivirals.

Discussed 
1. Toxicity
2. Unresolved psycho evolutionary & trans generation issues
3. EMR microwave, electricity & magnetic fields
4. Infections
5. PANDAS & PANS
6. HPU (HemoPyrrollactanUria)
7. CCSVI
8. Dental issues
9. ? Brain waves
10.Decreased regulatory neuropeptides & hormonal deficiencies

Says he believes it is a mistake to try to fix hormonal issues ie in Babesia - hormones can make more toxic and need to come later in treatment.

Illness & Epigenetics

psychological and physical trauma

In animal models epimutations followed 7 generations generally led to study families dying out.
We are now third generation exposed to microwave and glyphosate 
Epimutations 1000x more significant than genetic mutations.
We do not have epigenetic testing yet.

Need to look at ways to help methylation.

Chlorella and chelation for heavy metals.
Aluminium particularly related with neuro toxins & pro inflammatory but no testing.

Tests that can help are 
Low WBC
Elevated MCV
elevated fasting blood sugar 90-110
low alkaline phosphate
moderately elevated LDC
Low urine specific gravity

are often indicated in the sickest patients.

Artimisin helpful and mentions a Lyme cocktail found on his website (link above)

John Caudwell


Spoke briefly about the journey he and his family had been on for the last 6 weeks. He has quickly recognised the lack of help from NHS and acknowledged how caring the lyme community was, he expects to interview for Chief Executive next week for a new charity for Lyme whose aim will be to get NHS to take responsibility for this patient group. He has been moved by the numbers of tragic stories. Much of what he said can be read on his Facebook page.

Dr Sarah Myhill

Sometimes I am ashamed to be a doctor - the biggest problem is the medical profession. Driven by pharmaceutical drugs to treat symptoms- it is important to ask what is the mechanisms going wrong.

Fatigue we all have, energy demand outstrips energy delivery 
Chronic fatigue - many have immunological symptoms.
ME also have inflammatory symptoms.

In CFS
1. Very poor stamina
2. delayed fatigue
are only two symptoms looked for.

Energy loss
Muscles - No stamina, weakness
brain - Foggy brain, poor energy delivered to brain. Having low mood or depression may be way of conserving energy such as in low seasonal defective disorder.
stress
eye - inability to read watch TV, photophobia- light intolerances
ear- noise intolerances
Immune system - activate immune system, such as in flu you
Intolerance heat & cold - requires energy. 
Gut & Liver- eating toxic food puts greater demands on liver
Hormone synthesis - likely to be slow
Cardiac symptoms - extremely common Heart symptoms compound all other symptoms. POTS - autonomic problem but can be a symptom of lack of energy to the heart.

Symptoms of inflammation can be localised or generalised. She draws a great analogy to a car engine  in respect of Mitachondria, diet, gut, lungs,heart circulation,Thyroid,Adrenal.

Need to pace energy but also mental energy. But refers to PACE as an oxymoron because if you get better with PACE therapy you do not have CFS.

Discusses various books she has written highlights importance of diet.
Modern diseases fueled by carbohydrate & sugar diets. Most important to follow stone age diet.
sleep - imperative 
Circadian rhythm
Sunshine & light vit D anti inflammatory, 
Avoid infections- acute infection is one thing but can switch on a chronic immune reaction.
(In generally ie flu or a cold she believes that symptoms of acute infection should not be suppressed by drugs, need to go to bed and rest, need to let immune system work).

Discussed tools to treat poor energy levels included CoQ10,Vit B3, magnesium, D ribose, vit B12 She says even if you can't get testing done this selection is very helpful and unlikely to do any harm.

Major source of toxins from fermenting gut. Alcohol intolerance is recognsied in ME patients uniformly.
Discussed thyroid function indicating problems with testing and the need to go on clinical symptoms. TSH is set high in UK and everyone has their own individual range.
Adrenal function - stress - mitochondria output
Detoxify- saunas can get rid of toxic load but not heavy metals.

Dr Schwartzbach 


Dr Schwardtzbach has tested more than 1000 samples from the UK and astounded how many tests are positive.

He gave an overview of infections and viruses that it is important to consider testing for in chronic diseases such as ME, MS, Fibromyalgia, RA,Alzheimers, Parkinsons, Autism.
Quoted that 50% of people in Sweden have Lyme Disease.  
It is a big problem to diagnose parasites only one lab that does that which is Fry labs in US.
Says CD57+ NK cells very important.
Learn from TB that it is reaction on T cells not B cells.
Only study on CD57 was one done by Stricker.
CD57 can be low in Chlamydia & Mycoplasma - need studies.

Elispot is test for T cells
very established, actual activity of T cells fighting against actual infections
sensitivity -84%
specificity -94%
Most doctors say it is unspecific everybody has it - but there is no argument to say this.
Patients not positive but have low CD57 if they are treated they improve and CD57 raises.
It uses the same bands that are used in the Western Blot.
antigen from B31 strain, OspA, Sensu stricto, Afzelii,garinii, + OspC native + DbpA? recombinant

The tests are CE certified - he does not produce the test he just uses them.

Tests support a clinical diagnosis
Doctors need to learn to make a clinical diagnosis it is not easy and no time to asses it needs specialists.

Immunoblot time will end in a year of two not because there is no Lyme.
Denmark don't use the Western blot they only use the ELISA based on only one study which was done by the person who owns the lab that does the tests.

Spot Technique
MicroArray
Seraspot
can quantify 60% in Chronic with 99% specificity

20%-30% Lyme positive in Autism - Bransfield
90% CFS Lyme positive
2014 - Pure Lyme dementia exists& has good outcomes in treated patients. Dementia patients should be tested.

Seems Koala bears can be treated for Chlamydia but not so humans.

Common symptoms of Chlamydia are cough, sinusitis and can cause all symptoms and illness as Lyme Borreliosis
Garth Nicolson - Mycoplasma
Can keep ticks in polythene bag in freezer/fridge? for testing

Elhrickia
Bartonella was found in 40% of ticks in Germany.
Showed a slide of Bartonella striae which are common.
Babesia very Important for blood transfusions services.
Ricketsia
EBV not found in ticks yet
Cytomegalovirus (CMV)
Herpes Simplex Virus linked with MS co factor CFS, Fibromyalgia
Coxsackie Virus nearly everyone in UK has IgA for CV

Most Fibromyalgia patients are Lyme positive.

Lyme found in Otzi died 50 million years ago.
oldest tick with Lyme found from 40 million years ago

Important to look for co infections too.
Autism 50% have chlamydia as well as 10-20% Borrelia but need to look for other infections

To treat viruses - barbour, artemisin, samento very difficult to eliminate - blocking mitochondria.

Dr Newton

Gave a brief update of a result of a visit to Porton Down in June. There will be a new initiative to try and raise funds for work on a UK direct testing method to find Borrelia this will be launched in a few days 

FIGHT LYME NOW 

Dr Alan MacDonald


presentation by Vimeo with question and answers by skype.






Review of Infectious Borrelia species Chronic Brain Infections and the Development of Alzheimer's Disease from Alan MacDonald on Vimeo.