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Archive for the ‘Lyme Related Articles’ Category

2015 has certainly been an interesting year for sure. Some promising research is starting to emerge & who knows, may lead to advances in testing & treatment of both acute & chronic cases of Lyme disease. A mass of conferences have been taking place including traditional, alternative & integrative therapies. As a patient it can’t come soon enough. Let’s hope forward momentum can continue for the sake of all the sick patients out there who’s only desire is to get better & lead a normal or near normal life as can be.

I continually update our conferences section (see Lyme conf in right hand menu) & would like to draw attention to the following new events coming up..

Belgium – a look at testing, traditional med & alternative therapies, Antwerp, Sep 12th & 13th: http://lyme-conference.bbow-apso.be/

Lyme Disease Action – focus on persistence, Univ Cambridge, Sep 12th: http://www.lymediseaseaction.org.uk/what-we-are-doing/conferences/

Cowden/Nutramedix Workshop, Copenhagen, Oct 4th Denmark (discounts on up to 5 protocols avail – free admission, reservations needed to secure place): http://www.nutramedix.com/downloads/Flyers/CopenhagenWorkshopInfoFlyer.pdf

Gresham Centre – lab specialists, Lyme docs & patients awareness day & book launch, London, Oct 10th: https://www.eventbrite.com/e/suffering-the-silence-living-experiences-of-lyme-disease-chronic-illness-tickets-17659779877

ILADS – Lyme Fundamentals Oct 15th Florida, USA followed by ILADS International Conf Oct 16-18th: http://www.ilads.org/lyme_programs/ilads-conferences.php

Lyme Disease Assoc/Columbia Univ, Lyme & Other Tick-Borne Diseases: Science Bridging the Gap, Nov 14-15th, Rhode Island USA: http://www.lymediseaseassociation.org/index.php/general-information-2015

Assoc Nutritional Medicine – focus on chronic conditions, Nov 15th, London: https://www.eventbrite.co.uk/e/lifting-the-veil-part-ii-chronic-disease-whats-really-going-on-tickets-17390619812

Beyond Lyme and Other Chronic Illnesses: Reclaiming our Health and Well-Being with Dr Horowitz author of Why Can’t I Get Better, Massachusetts, Dec 4-6th USA: http://kripalu.org/program/view/BLOI-151/beyond_lyme_and_other_chronic_illnesses_reclaiming

If you are an alternative practitioner we have an open letter available on our site (the first part incs conferences mentioned above, the main part of the article is further down the page at: https://ticktalkireland.wordpress.com/2015/02/13/open-letter-to-herbalists/)

Some new research coming out focuses on persistence of infection – the promising thing is, not only are they looking at why borrelia is persistent they are also making progress on finding which FDA approved drugs can be used to combat it. Some of the new research incs the following:

Identification of new compounds with high activity against stationary phase Borrelia burgdorferi from the NCI compound collection:

Emerging Microbes & Infections (2015) 4, e31; doi:10.1038/emi.2015.31
Published online 3 June 2015 Jie Feng, Wanliang Shi, Shuo Zhang and Ying Zhang

We identified the top 30 new active hits, including the top six anthracycline antibiotics daunomycin 3-oxime, dimethyldaunomycin, daunomycin, NSC299187, NSC363998 and nogalamycin, along with other compounds, including prodigiosin, mitomycin, nanaomycin and dactinomycin, as having excellent activity against B. burgdorferi stationary phase culture. The anthracycline or anthraquinone compounds, which are known to have both anti-cancer and antibacterial activities, also had high activity against growing B. burgdorferi with low minimum inhibitory concentration.

http://www.nature.com/emi/journal/v4/n6/full/emi201531a.html

Borrelia burgdorferi, the causative agent of Lyme disease, forms drug-tolerant persister cells.

American Soc Microbiology 26 May 2015, doi: 10.1128/AAC.00864-15
Bijaya Sharma1, Autumn V. Brown1, Nicole E. Matluck1, Linden T. Hu2 and Kim Lewis

Daptomycin, a membrane-active bactericidal antibiotic, killed stationary phase cells, but not persisters. Mitomycin C, an anti-cancer agent that forms adducts with DNA, killed persisters and eradicated both growing and stationary cultures of B. burgdorferi. Finally, we examined the ability of pulse-dosing an antibiotic to eliminate persisters. After addition of ceftriaxone, the antibiotic was washed away, surviving persisters were allowed to resuscitate, and antibiotic was added again. Four pulse-doses of ceftriaxone killed persisters, eradicating all live bacteria in the culture.

http://aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract

Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline

Jie Feng, Paul G. Auwaerter, Ying Zhang
PLOS Published: March 25, 2015 / DOI: 10.1371/journal.pone.0117207

Of studied drugs, daptomycin was the common element in the most active regimens when combined with doxycycline plus either beta-lactams (cefoperazone or carbenicillin) or an energy inhibitor (clofazimine). Daptomycin plus doxycycline and cefoperazone eradicated the most resistant microcolony form of B. burgdorferi persisters and did not yield viable spirochetes upon subculturing, suggesting durable killing that was not achieved by any other two or three drug combinations.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

Persistence will be the topic of discussion in LDA (UK) conf coming up at the Univ of Cambridge (see conf list above or in right hand menu for more details).

To see loads more studies on persistence check out our links section on the site at: https://ticktalkireland.wordpress.com/facebook-contents-page/chronic-lyme/

A promising new test is being developed in Europe called Hilysens, phase 2 of development is now under way, for more details check out: http://hilysensproject.eu/index.php

I have recently updated our Western Blot Comparison sheet to include Porton Down UK – the file can be downloaded at: https://ticktalkireland.files.wordpress.com/2015/09/wb-comparison-by-jenny-update-2015.xls

For many studies & a look at other tests available check out our section on testing at: https://ticktalkireland.wordpress.com/lyme-links/testing/

Finally, a reminder of who’s to blame for our ills! Here some pics of ticks as a visual reminder to watch out for, although some docs feel that Lyme disease isn’t a problem in Ireland sadly the truth is that there are many more out there than people realise. From our survey of 104 people up to May 2014 When asked which country the tick-borne infection took place, 61% of our respondents were infected in Ireland and 22% in North America. The remaining 17% listed Europe as their source of infection.

If a doctor was to believe that Lyme can only be contracted in America then they would miss 78% of our respondents who were infected in Europe with the majority getting sick after tick bites here in Ireland. For a look at the full results of our surveys check out: http://www.ticktalkireland.org/surveys.html

These are still ongoing & new results will be published towards the end of this year. Please also note our ‘Tick Talking while You’re Walking’ survey where members of the public report in ticks being seen (no guarantee that these are infected ticks but does show where clusters are) – Counties Galway, Kerry, Wicklow & Cork continually show high in the rankings although it’s worth mentioning that many parts of Ireland are reporting ticks, even in gardens & being brought into houses by pets. Here’s a few photos of ticks being reported over the last few years:

Ticks found on a hunting dog in County Meath Jun 2015

hunting dog jun 2015 meath

Tick found at Crodaun Park Sept 2014

Crodaun Park Niall Sep 2014

Ticks from a Deer Alliance awareness session Nov 2011

Deer Alliance Nov 2011 1

Ticks found at Portumna Forest Sept 2011

15 ticks Portumna Sep 18 2011_1

& Portumna again in 2012..

Portumna adult female_engorged nymph

For more tick images check out our main site at: http://www.ticktalkireland.org/ticks.html

Meanwhile, studies relevant to tick-borne diseases in Ireland can be found at: https://ticktalkireland.wordpress.com/irish-related-studies/

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Updated 8th Sept 2015: have updated our conference section with some more events that may be of interest to alternative practitioners..

Belgium – a look at testing, traditional med & alternative therapies, Antwerp, Sep 12th & 13th: http://lyme-conference.bbow-apso.be/

Lyme Disease Action – focus on persistence, Uni Cambridge, Sep 12th: http://www.lymediseaseaction.org.uk/what-we-are-doing/conferences/

Cowden/Nutramedix Workshop, Copenhagen, Oct 4th Denmark (discounts on up to 5 protocols avail – free admission, reservations needed to secure place): http://www.nutramedix.com/downloads/Flyers/CopenhagenWorkshopInfoFlyer.pdf

Gresham Centre – lab specialists, Lyme docs & patients awareness day & book launch, London, Oct 10th: https://www.eventbrite.com/e/suffering-the-silence-living-experiences-of-lyme-disease-chronic-illness-tickets-17659779877

Assoc Nutritional Medicine – focus on chronic conditions, Nov 15th, London: https://www.eventbrite.co.uk/e/lifting-the-veil-part-ii-chronic-disease-whats-really-going-on-tickets-17390619812

Beyond Lyme and Other Chronic Illnesses: Reclaiming our Health and Well-Being with Dr Horowitz author of Why Can’t I Get Better, Massachusetts, Dec 4-6th USA: http://kripalu.org/program/view/BLOI-151/beyond_lyme_and_other_chronic_illnesses_reclaiming

Updated 15th July 2015: please note that a new conference has been added in our conf section (down right hand side) – Judy Rocher from Rio Trading will be presenting on Natural Therapies  Lyme Disease and its Associated Infections – covering Cowden/Buhner/Klinghardt & more… (London UK August 2nd 2015)

http://www.eventbrite.co.uk/e/natural-therapies-with-judy-rocher-lyme-disease-and-its-associated-infections-tickets-17650961501?aff=erellivorg

Also on same day is a workshop on testing for Lyme & co. by lab expert Dr Armin Schwarbach: http://www.eventbrite.co.uk/e/laboratory-testing-lyme-associated-infections-training-workshop-with-dr-armin-schwarzbach-tickets-17439741737?aff=erellivorg (aimed at health professionals).

Updated 21st May 2015: please note that a new conference has been added in our conf section (down right hand side) – Cowden/Nutramedix will be presenting a workshop in Dublin June 3rd 2015 on Lyme disease herbal tinctures, all entry is free & particpants can claim reduced price protocols.

Open to patients & practitioners alike. http://www.nutramedix.com/downloads/Flyers/Dublin%202015%20Flyer.pdf

Updated 9th March 2015: have added a new alternative therapy conferences in our conf section (down right side). For quick link to conference at Univ Klagenfurt in Austria (April 25th) go to..

Invitation Klagenfurt Conference April 2015(2)

Feb 2015: Have sent this to some herbalists & naturopathic colleges in Ireland, feel free to pass along!

Rear view of a teenager girl standing in a field of tall grass
Lyme disease has been a growing concern in Ireland. Carried by ticks, Lyme disease can range from a mild illness if caught early to severe, life changing symptoms. It can affect the heart, muscles, joints, tissues, endocrine & neurological systems. Ticks can carry a multitude of infections. Studies in Ireland have been very slow since the retirement of Prof Gray; Gray has written scientific articles about Lyme disease in the 90s which we have collated on our site at: https://ticktalkireland.wordpress.com/irish-related-studies/

Treating & testing of Lyme disease patients is fraught with controversy & political battles, the HSPC, IDSI, RCGP prefer to treat patients with short term antibiotics following the inflexible guide of the IDSA (American Infectious Disease Soc) – many patients go abroad to find someone willing to treat them longer under the guidance of ILADS (Intl Lyme & Assoc Diseases Soc). This of course occurs at great expense to the patient. Integrative therapies are being used much more often as Lyme can cause much disruption to the immune system to warrant just antibiotics alone. We feel there is a need for an integrative type clinic in Ireland who would be willing to take on complex patients, so they don’t have to travel abroad.

If any centre or individual practitioner is interested (or even students learning about integrative therapy) I would like to offer some pointers below in the view of upcoming conferences, useful books/protcols & information on testing just to provide some additional background information.

Testing:

This can be a tricky topic – most commonly antibody tests are used however test too soon & the body may not be creating enough antibodies, tests can also be affected by the strain of bacteria, immune response of the patient or affected by use of antibiotics early in treatment (as it may abrogate immune response). Some patients & lyme specialists use alternative tests abroad such as LTT (T cell tests), CD57 NK (whilst not diagnostic it can show a depleted immune system) & sometimes Igenex testing is used which uses a different set of bands in a Western Blot (WB is a secondary test however lyme specialists prefer to skip the first tier Elisa or C6 Elisa test & go straight to the more specific test).

For more info on testing head to our section on ‘suspect lyme’ http://www.ticktalkireland.org/suspectlyme.html

For a summary on testing, treatment, history, structure of bacteria etc go to: https://ticktalkireland.wordpress.com/newcomers-guide/

Conferences:

Coming up are 3 conferences that may be of interest:

1. Lifting the Veil – Infectious Pathogens & Their Role in Chronic Disease

Academy of Nutritional Medicine, Sunday, 8 March 2015 from 09:30 to 18:00 (GMT) London

ME, FMS, Autism & Lyme Disease.. (Lab specialist Armin Schwarzbach will be present. He runs the newly opened Armin Labs / prev worked at Infectolabs in Germany.) He may be able to help with any questions on lyme disease testing.

https://www.eventbrite.co.uk/e/lifting-the-veil-infectious-pathogens-their-role-in-chronic-disease-registration-15714304909

2. Natural Therapies for Lyme Disease, March 28th 2015

Half-day workshop at Holiday Inn, Regents Park,
Carbuton Street, London W1W 5EE, from 9.30 am – 1.00 pm.

Judy Rocher, therapist and education manager of Rio Trading, will be discussing Lyme Disease and natural therapies such as the Cowden protocol (condensed and full). This course is hosted by AONM.

Course fee: £12/goodie bags with products above and beyond this will be distributed. The event is CPD accredited. To register, please go to http://tinyurl.com/Therapies-for-Lyme

3. Integrative Therapies for Lyme disease – April 10-11 2015 (Netherlands)

With a focus on Beyond Balance herbals – speakers inc Gedroic, Schwarzbach & Klinghardt (speakers are well known in the Lyme arena; we have no experience of Beyond Bal herbs)

http://www.invintro.eu/en/content/conference-2015

4. ILADS International Lyme Conf Germany 8-9 May 2015

ILADS always has wonderful & very knowledgable speakers, discussed will be testing & treatment covering various tick-borne diseases & inc paediatric health care. Often exhibiting is Cowden, a supplier of herbal tinctures for Lyme & co.

http://www.ilads.org/lyme_programs/augsburg/ilads-augsburg-lyme-conference.php

Herbal protocols:

Over the years many protocols have been developed to help treat a complex disease such as Lyme disease, the ones most commonly used are Buhner herbs (we highly recommend his book Healing Lyme Disease, a new version is due out this Spring). This website is useful to get an idea of the core protocol although the book covers much much more. http://www.buhnerhealinglyme.com/

Cowden is a protocol made by Nutramedix, they can be used individually or full monthly protocols are available. Some practitioners/herbalists are able to apply for a reduced price protocol for one patient per practice for those who are eligible (on low income). Cowden also hold workshops at conferences around Europe where they offer reduced protocols for any practitioner/therapist that attends. These protocols cover heavy metals as well as immune support, detox & protection against multiple infections (viral, bacterial etc). More information available at: http://www.nutramedix.ec/ns/lyme-protocol

Byron White is another herbal program that patients use, it is very strong going by feedback from patients & only available via a practitioner.. http://www.byronwhiteformulas.com/

There is a whole wealth of alternative med information out there & I have selected the top 3 most regularly used by patients as a guide. More info on alternative medicine is available on our site at: https://ticktalkireland.wordpress.com/lyme-links/alternative-treatment/

Expertise:

I would also highly recommend Dr Horowitz’ new book released last year on ‘Why Can’t I Get Better’ – an integrative doctor with a wealth of experience & a regular speaker at conferences. The book contains a checklist of symptoms to help in diagnosis of patients: http://www.amazon.co.uk/Why-Cant-I-Get-Better/dp/1250019400/

Finally I’d like to offer you an excellent presentation by highly esteemed lyme specialist Dr Harris who compiled this extensive review of herbal protocols in relation to Lyme & other tick-borne infections.. http://www.acimconnect.com/Portals/0/Events/Dallas%202013/Presentations/Harris-%20DFW%20June%202013.pdf

NB: we have a wealth of information also in our links section on this site at: https://ticktalkireland.wordpress.com/lyme-links/

Or  check out our downloadable leaflet.

I hope this information is of interest to you & your colleagues & I wish you all the very best. Tick Talk Ireland. lyme protest 1

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do you want lime with that?!So you’ve had that final diagnosis, it isn’t chronic fatigue syndrome after all, you don’t ‘just need’ anti-depressants & cognitive behavioural therapy & finally you can get onto treatment for that bacteria living inside you. But then you have the sinking realisation that treatment for Lyme disease could in fact make you worse! In this post I will delve into the phenomenon of herx reactions, what they are & my own interpretation of the differences between a herx, a flare & a crash…

Click to download PDF

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Hidden in Plain Sight

looking glass
Not every tick carries the Lyme causing bacteria ‘borrelia’ & if they do then not everyone succumbs to the disease. A person can be an asymptomatic carrier whether acquired from a tick bite or passed along by the mother. However some people can be unwitting sufferers of Lyme disease & not realise due to the overlapping symptoms with other illnesses, such as MS, ME, Parkinsons, ALS & even conditions affecting the skin & eyes & multiple organs.

Transmission times may differ depending on strain & sometimes you see 36-48 hours mentioned before Lyme can be transmitted from a feeding tick. This may lead to people dangerously thinking they are safe even when the tick had been feeding for a while. This website shows a collection of articles related to shorter transmission times..

So it seems that Lyme may not always be hard to catch, but what about a cure? Let’s take a closer look at the cause of Lyme disease ..

Some Interesting facts about borrelia…

Did you know that the spirochete can move faster than any human cell in the body?

The fastest speed recorded for a spirochete is upward of two orders of magnitude above the speed of a human neutrophil, the fastest cell in the body. This alacrity and its interpretation, in an organism with bidirectional motor capacity, may well contribute to difficulties in spirochete clearance by the host.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0001633

Did you know that borrelia doesn’t need iron to survive?

“Current dogma states that to be successful in humans, bacteria must overcome strict iron limitations that the human body imparts on them…To our surprise, we found that B. burgdorferi doesn’t even require iron. In fact, iron is extremely toxic to it.” http://www.sciencedaily.com/releases/2000/06/000602073005.htm

Wow, borrelia has 3 times more plasmids than any other bacteria & is more complex than syphilis!

Borrelia has over 1500 gene sequences so this is a very, very complex bacteria. There are at least 132 functioning genes in Borrelia and this is in contrast to Treponema pallidum which is the spirochaete that causes Syphilis. This bacteria has only 22 functioning genes so Borrelia is a much more complex organism from a genetic point of view compared to the organism that causes Syphilis.
https://ticktalkireland.wordpress.com/lyme-links/structure/

About the spirochete:

The spirochete is as long, as a fine human hair is thick. Borrelia burgdorferi is a highly mobile bacteria, it can swim extremely efficiently through both blood and tissue because of internal propulsion. It is propelled by an internal arrangement of flagella, bundled together, that runs the length of the bacteria from tip to tip.
http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease

Granules or blebs:

Lyme spirochetes have also been seen shuddering violently or breaking into pieces, producing small particles called granules or blebs. Radolf and Bourell (1994) believe that the granules are “pinched-off” bits of cell wall which have been shown to contain DNA material (Brorson and Brorson 1997). ..Others have observed the formation of blebs in response to the presence of a strong immune response or powerful antibiotics, suggesting that granule formation is another way that Bb survives the action of bactericidal agents (Sadziene and others 1994, Dever and others 1993).
https://www.natcaplyme.org/lyme-topics/the-borrelia-genus/2.html

L-Forms:

When a bacteria like a spirochete loses its cell wall, it becomes incapable of holding its spiral shape. It becomes a sphere surrounded by a thin semi-permeable membrane. This round sphere is like the evil counter pare to the classical spiral form. Why evil? Well, when the bacterium sheds its cell wall, it also sheds several proteins that are markers to the human immune system. In other words, the immune system has trouble finding and recognizing this new form of the bacteria. It’s almost like a criminal using disguises to change identities after each crime. Only this disguise is also bullet proof because, without a cell wall, antibiotics like Rocephin are useless.
http://www.lymeneteurope.org/info/notes-and-observations-on-cell-wall-deficient-forms

Cyst Forms:

The cyst form of B. burgdorferi develops when a single Lyme spirochete curls into a ball and forms a cocoon around itself, which is impermeable to most antibiotics.
Cyst formation in Bb occurs in response to common antibiotics such as ceftriaxone and penicillin (Murgia and others 2002, Kersten and others 1995). Researchers have also induced cyst formation by exposing the Lyme disease spirochete to other stressors, such as nutrient deprivation (Brorson and Brorson 1998b; Brorson and Brorson 1997) or high temperature, extreme pH variations, and the presence of hydrogen peroxide (Murgia and Cinco 2004). Gruntar and others (2002) found that B. garinii cysts proved infective when introduced into mice and could even survive freeze-thawing. https://www.natcaplyme.org/lyme-topics/the-borrelia-genus/2.html

Biofilms:

Emerging research indicates that biofilm may be a significant factor in Lyme disease and subsequently will impact requirements for treatment. Biofilm is a polysaccharide matrix that traps the bacteria making it harder for antibiotics to reach and destroy them.

Biofilm protocols have five main goals:

1. Eat through the goo-like matrix using enzymes and thinning agents
2. Break the bonds between the goo using Ca-EDTA
3. Kill the now-exposed bugs using antimicrobials
4. Sweep the whole mess out using fibers and binders
5. Rebuild the gut lining with happy, healthy critters

http://www.lymebook.com/biofilm – an interesting book about the role of biofilm and source of biofilm protocols.

In summary:
Borrelia moves faster than any other living cell in the body
It does not require iron to survive
It is pleomorphic meaning it can change form at any given moment, evading antibiotics & the immune system & can reconvert back to active form when the coast is clear.

Different forms may include motile (spirochete), cell wall deficient (L-form/cyst/round bodies), fragments, granules & blebs & biofilm (a slime layer protecting all forms from drugs & the immune system).

Click here for a must see video showing cysts, spirochetes & granular forms in one massive bio-film mass! http://www.youtube.com/watch?v=a4uNDWdChM8&feature=related

For a fascinating look at borrelia or ticks under the microscope check out our web page at: https://ticktalkireland.wordpress.com/lyme-links/under-microscope/

ILADS

Testing, Testing..

Testing is a huge issue & one I feel sad about. Why sad? Because it’s long be known that testing needs to be improved & yet things are still far from perfect. To be fair, advances have been made – C6 testing is now utilised, however this is not necessarily useful in all patients – different strains can produce different bands in testing & yet instead of looking to see if a band is specific to lyme they instead require an X number of bands to be positive, thereby ruling out someone who has poor immune response or may be too early in the illness to start producing enough antibodies.

Also early antibiotics are known to abrogate immune response but if the early treatment is inadequate the patient can still go on to develop disseminated lyme disease & yet test falsely negative.

I have known patients to exhibit completely negative C6 tests which was then used to rule out Lyme disease who then went on to test positive in a Western Blot. Is the patient then told their C6 was false negative or the WB was false positive? Either way some of the testing was faulty.

I have known patients with a positive PCR of spinal fluid being told it was a false positive (presumably because their antibody blood tests were negative) & therefore denied IV treatment. I have known some people being refused testing altogether.

What about those patients who were borderline positive? Was the cutoff too low? Was the mild response to the testing showing some infection? Is the infection gone or still active??

A patient who had the foresight to look at other patients blood (most with a previous diagnosis of ME) under the microscope has some amazing high quality pictures & video footage. You will be shocked by what he found, especially as most of these patients were negative by NHS testing (although positive by private tests such as Igenex & LTT). Why not take a look at:
http://counsellingme.com/microscopy/SpirocheteBloodMorphology2.html

Some patients choose to move away from antibody testing & find antigen testing looking at T cells using private funds. Doctors however are wary of these tests & often refuse to accept the results. Some T cell tests though can be useful according to these studies.

LTT/Elispot – Lymphocyte Transformation Test (B or T Cell) Studies
The sensitivity of LTT was superior to serological investigation of antibodies in the ELISA or immunoblot tests and correlated well with clinical symptoms. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751012/
The ELISPOT technology has proven to be extremely sensitive in detecting even low frequencies of antigen reactive T cells and has been approved by the FDA for use in the diagnosis of tuberculosis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972671
The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/
The level of detection by ELISPOT was 10 to 200 times more sensitive than ELISA performed on culture supernatants. http://www.ncbi.nlm.nih.gov/pubmed/7999925
After therapy, most patients (90.7%) showed negative or markedly reduced lymphocyte reactivity correlating with clinical improvement. http://www.ncbi.nlm.nih.gov/pubmed/16876371
Use of a cocktail of recombinant, in vivo-expressed B. burgdorferi-antigens revealed the robust induction of borrelia-specific antibody-secreting cells by ELISPOT. http://m.medicalxpress.com/news/2011-06-lyme-disease-bacteria-lymph-nodes_1.html

So as it’s known that testing needs improving, can we at least agree that until such time that they are improved, that alternatives such as LTT be considered as viable tests?

I conclude you have Lyme disease but what to do with you?!

question mark

Looking at treatment we can see from the morphology listed above that it could be tricky
to treat so what options are there? Eva Sapi found in test tube studies that doxycycline doesn’t perform as well as hoped. Although it’s effective against spiros it encourages formation of round bodies (effectively hiding themselves away from treatment). It has long been known the metronidazole (flagyl) is effective against cell wall deficient drugs but the surprising find was that it’s also effective against other forms too. Combination therapy is probably key & the use of biofilm busters such as protelytic enzymes may help.

A recent study on persisters listed FDA approved drugs & their ability to clear persistent bacteria & again doxy didn’t do so well. If we can respect the bacteria for what it is (NOT hard to catch & easy to cure) then we can really look at how to get patients well & how to test for bacteria more effectively. If someone is chronically ill after treatment it should not be assumed that A. they didn’t have Lyme in the first place or B. that they ‘must be’ cured by short treatment therefore anything else thereafter must be ‘aches & pains of normal living’ or post lyme syndrome.

Many patients will tell you that the flares before treatment can be just as devastating as after treatment suggesting an active ongoing infection. Relapses can be common too as the bugs may lie low (in a spheroplast/cystic form /round bodies) evading treatment, once withdrawn they can convert back into motile form causing more havoc to the patient.

In this study (PDF) on round bodies the author stated that round bodies were able to revert and become active spirochetes from day 5 & in this study the author found motile spiros developed from cyst forms even after freeze/thawing conditions.

We need to understand more the immune system’s response to Lyme & the effective ways to tackle it. We need a much shorter treatment time by using more effective drugs & thereby lessening the recovery time. We need to improve testing AND THEN ACCEPT THOSE IMPROVED TESTS instead of insisting that the 2 tier test is the only one that should be used.

Just like with TB we need to move away from antibody testing & embrace T cell tests as standard. Similar to the patient who looked at the bloods of ME patients we need to be prepared to look more closely at blood & tissue of Lyme patients – is there live bacteria despite negative testing, have spiros persisted despite treatment, were patients wrongly diagnosed with ME/CFS in the first place?

Let’s keep asking those questions & pushing for changes.. sadly patients are often the ones pushing for this, shouldn’t the doctors be concerned also?

Patient Power –

Tick Talk Ireland is solely run by volunteers who have suffered & are ‘still’ suffering from the effects of Lyme disease (or close family members of a Lyme disease patient). We do what we do to help prevent others from going through the same ordeal – we rely solely on our volunteers to help us spread the word.

lyme protest 1

Here’s some ways we have made a difference…

Articles, TV, Newspaper & Radio Interviews, Tick Sweeps, Contacts with TDs & MEPs, Leaflets, Handouts, Surveys, *Staff Awareness Packs, Talks, Awareness Tables, Lyme Conference, Under Our Skin showings, Children’s Book & Poster, Meeting with HPSC, Letter of Concern to Health Minister Ireland & British PM, Letter to the IDSI & HPSC, Letter to Medical Card Team, Newcomers Guide & FAQ, Petitions, Websites, Blog Site, Facebook Pages, Email Support & Twitter Feed, Collation of Research for Lyme Research UK & Ireland, attended the Public Health England Meeting in London & also Supported the Worldwide Rally.

*Staff Awareness Packs are available by contacting our information officer mary (at) ticktalkireland.org. We also have a limited supply of leaflets, if you are able to help with distribution feel free to contact us at info (at) ticktalkireland.org (replace at with @ before sending!)

Patients have also helped with talks in their local areas, leaflet distribution, Under our skin showings, radio & news interviews, annual meet-ups, contacts with TDs & MEPs, helped get a warning sign at Killarney National Park Play Area, volunteered at awareness events, manning tables & doing talks plus helping at our very first Lyme conference, also presentation of concerns to the Government Health Committee in Dublin (which included inputs from lab specialists, a tick specialist & head of veterinary labs, Oct 2013)

NB: We at Tick Talk Ireland support ILADS & endorse their New Guidelines issued in 2014 as the best source of information regarding the treatment of Lyme disease.. We also support Burrascanos Treatment Guide & The German Borreliosis Society Guide for supportive information.

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radio logoLyme is discussed in investigational radio show called Flashpoints at KPFA FM. Below is a little about the radio show & the clips available for listening so far..

About


Flashpoints is an award-winning daily investigative newsmagazine broadcast on the national Pacifica Radio network. Through original reports and some of the key investigative reporters of our time, Flashpoints goes to the frontlines and to the core of the stories in the areas of government and corporate criminality, human rights, and economic justice.

Can you help?

KPFA are asking for much needed support to help them continue their investigative show on Lyme Disease. https://secure.kpfa.org/support/

Radio clips

Posted on January 15, 2014 by Flashpoints

Today on Flashpoints: An expanded investigation into Lyme disease and how the medical profession has dropped the ball in dealing with this new emerging epidemic.. Dr Jessica Bernstein psychologist talks about her own diagnosis..

Flashpoints 01-15-14

Posted on January 22, 2014 by Flashpoints

Today on Flashpoints: Internationally noted novelist Amy Tan speaks out about her battle against Lyme disease. Also, we have Dr Harris who is an expert in Lyme disease in the San Francisco Bay Area.

Flashpoints 01-22-14

Posted on January 28, 2014 by Flashpoints

Today on Flashpoints: We continue our multi-part series on Lyme disease, and we’ll explore how Lyme can cause neurological symptoms that look like MS and Alzheimer’s. Interview with Tom Grier microbiologist & Dr Alan MacDonald pathologist..

Flashpoints 01-28-14

Posted on February 05, 2014 by Flashpoints

Today on Flashpoints: Can Lyme disease be passed by sexual intercourse? We continue our ongoing series on the growing Lyme epidemic. We’ll be joined by an MD and a researcher who were part of a major study. We’ll also speak with the filmmaker of Under Our Skin, a real life thriller about the nature of and battle against Lyme disease. Interview with Dr Stricker about sexual transmission & Andy Abrahams Wilson, director/producer of Under Our Skin.

Flashpoints 02-04-14

Posted on February 07, 2014 by Flashpoints

Today on Flashpoints: We continue our ongoing series, on the growing epidemic of Lyme disease. We’ll be in deep conversation with Dr. Richard Horowitz, one of the leading doctors in the fight to call attention to the growing Lyme disease epidemic. He’s also the author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease”. And we’ll feature more excerpts from the hard hitting documentary film “Under Our Skin”.

Flashpoints 02-06-14

Lymelight Radio

Katina Makris, author of the Lyme recovery award winning book ‘Out of the Woods’ runs a very good radio show called Lyme Light Radio.

To review the speakers & archives please hop to: http://www.thedrpatshow.com/searchshowsAll.php?search=lyme&x=0&y=0

Past guests include Dana Walsh from Under Our Skin, Dr Horowitz, Dr Jernigan, Dr Kenneth Liegner & many, many more. Check it out!

Hot news, soon to come, an interview with Katina on Lyme in UK & Ireland, more to follow soon 🙂

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Your Voices are now being Heard!

Some great news – in October 2013 the HPSC mentioned that a Taskforce was being set up for early 2014 (later confirmed by Minister for Health & Children, Dr James Reilly). A tick-borne infection sub committee created a Lyme disease leaflet & poster in 2010 – let’s hope that the new committee next year will bring these leaflets out to the public & posters in national parks to warn the public of the dangers before it is too late!

More good news is that a hearing was held on 21st November at the government buildings (committee room 2) in Dublin city, Ireland – an introduction is below along with links to the transcripts 🙂

Introduction

Ireland’s very first Lyme Disease Conference was held in Dublin on 5/6 June 2012. At this event filming took place for an upcoming documentary by Lisa Vandegrift Davala & her team. On the 7th June, Lisa, via Senator MacSharry, was invited to speak to elected representatives at the Irish government offices, regarding testing & diagnosis, accompanied by Dr Shah from Igenex labs in America. Senator Moloney who met with Lisa & Tick Talk representatives at the conference, also added her support.

In 2013, following concerns over poor diagnosis & treatment in Ireland, Lyme patients Tracy Brennan & Annette Moloney met with TD’s (Irish politicians) Derek Nolan, Emmett Stagg plus Ciara Conway & Jerry Butimer of the Oireachtas Health Committee.

November 21st 2013 therefore marked a momentous day whereby Lisa, Tracy & Annette were invited to present their concerns & personal stories to the committee. Tracy & Annette were able to interview over 100 patients before the day & prepared slides of some of these cases –they involved reports from children suffering with Lyme which is heart wrenching to read, the health committee received copies of these presentations before the hearing took place.

Also invited was lab specialist Armin Schwarzbach, tick researcher Dr Eoin Healy, & head of regional vet labs Mícheál Casey. Below are some summaries of their presentations….[Please note that Tick Talk was not instrumental in pulling this hearing together, full credit goes to the patients & speakers involved!]

Links to summary, full transcript & video playback…

For Tick Talk’s summary of the event head on down to: https://ticktalkireland.files.wordpress.com/2013/12/committee-for-health-write-up.doc

A copy of the full transcript is available at: http://oireachtasdebates.oireachtas.ie/Debates%20Authoring/DebatesWebPack.nsf/committeetakes/HEJ2013112100001?opendocument

The full hearing (90 minutes) can be played back at: http://www.oireachtas.ie/viewdoc.asp?DocID=24859&&CatID=127

NEWLY ADDED 14th Dec 2013
Videos of the hearing has now also been released on Vimeo which allows for segments to be played back also (see below)..

Part 1 http://vimeo.com/80805750 Part 2 http://vimeo.com/80805749

Nolan TD was thanked for bringing it to committee’s attention & Lyme Disease may be re-visited again next year.

To see a newspaper write up check out: Irish Independent 22 Nov 2013

For a radio interview by Tick Talk member Ann Maher who was in the public gallery: KCLR 96 FM 22 Nov 2013 (Sue Nunn show)

NEWLY ADDED 14TH DEC 2013
Plus latest news article ‘I was so tired and had this feeling that I’d just collapse’

These links will be added to our Irish Related Articles section in the links page!

Soon to follow – Tick Talk’s end of year round up plus our final accounts should be available at the end of 2013. Meanwhile we do hope you have a happy, safe Christmas & a joyous/prosperous New Year!

Santa Waving Through a Circle

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A great selection of articles take a close hard look at the controversy surrounding Lyme Disease:

PART 1: Lyme disease: Dutchess leads nation in cases (Aug 17 2012)
PART 2: Lyme disease: Antibiotics fuel debate (Aug 19 2012)
PART 3: Tick research lags in war vs. Lyme disease (Sep 9 2012)
PART 4: Where foxes thrive, Lyme disease doesn’t (Nov 13 2012)
PART 5: CDC says Lyme disease tests almost always correct but the pitfalls are many
PART 6: Lyme disease counting is uncertain, imprecise (Nov 18 2012)
PART 7: Dutchess leads state in babesiosis (Dec 23 2012)
PART 8: More ticks, Dutchess people infected with babesiosis (Dec 24 2012)
PART 9: Preservation: An antidote to Lyme disease

2013 Articles

Expose– Lyme emails request took 5 years (May 2013)

4 in 1 Congress Demand Review – Lawmakers Question Lyme Treatment Guidelines (June 2013)

Letter to CDC – Raw data contradict CDC’s Lyme position (Jul 2013)

Video clip – Interviews with people diagnosed with Lyme who first tested negative for the disease. Video includes footage of Robert O. Giguere, director of sales for IGeneX, Inc., who explained Lyme disease testing at a talk in Fishkill

Battle shifts over Lyme Disease – The debate over the existence of chronic Lyme disease — among the most heated in modern medicine — has gained momentum toward the doctors who treat it, patients who have symptoms of it and researchers who study it (Sep 2013)

Journalist wins award!

For more articles, letters & video clips on lyme check out: http://www.poughkeepsiejournal.com/lyme

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