HEADACHES FOLLOWING TICK BITE - COULD IT BE BARTONELLA?

Published on Apr 2, 2015

Bartonella infection is a recently identified emerging infectious disease associate with both acute and chronic disorders in humans and animals from cat scratch disease and trench fever to symptoms easily misdiagnosed as an autoimmune disorder.

Video credit: NC Museum of Natural Sciences http://naturalsciences.org/

Healthy teen boy develops debilitating #headaches. Fortunately his mother is a veterinarian.

Earlier post on Bartonella http://lookingatlyme.blogspot.co.uk/2015/05/bartonella-emerging-infectious-disease.html

HAS THE HEALTH PROTECTION AGENCY ONCE AGAIN FAILED US?

The Health Protection Agency publishes the figures for Lyme Borreliosis in England and Wales in 2011.here 

In 2011, 959 cases of laboratory-confirmed Lyme borreliosis (LB) were identified in residents of England and Wales, an incidence rate of 1.73/100,000 total population. This compares with 905 cases and an incidence rate of 1.64/100,000 in 2010. Excluding the 197 (21%) people known to have acquired their infection abroad during 2011, 762 are believed to have acquired their infection in the UK an incidence rate of 1.38/100,000 total population.

(To those not familiar with Lyme Disease certain sources believe the true figures of cases are likely to be about 10x the number of serological cases year on year.)

One point that interested me was this 'Almost  half (n=463) reported presentations compatible with recent infection,' therefore the other half must be cases found beyond the early stages of disease- perhaps disseminated Chronic Lyme Disease!

Did the HPA recommended treatment of a couple of weeks antibiotics cure all, actually do that? or maybe that is the reason so many patients are joining Eurolyme looking for answers to why their NHS short treatment didn't work.

This NHS doctor has something to say about her initial failed treatment but recovery on longer treatment here 

This BBC interview In 2007 with researcher Dr Klaus Kurtenbach ( sadly now deceased) has some very interesting points here

"In France they have diagnosed 10 times as many cases as here", says Dr Klaus Kurtenbach, one of the scientists at Bath University.

"Yet we've found the same number of ticks here carrying the disease."

Scientists studying ticks in the West Country's open spaces

Dr Kurtenbach and his colleagues believe British doctors are failing to spot the symptoms of the disease.

They say hundreds of people are suffering with headaches and even mild paralysis, who could be treated.

For Inside Out West, Dr Kurtenbach went out to woods near Bath to gather ticks.

Even in February, he found a large number of the bugs.

"Many people think it's only a problem in summer, and only in major forests", he says.

"But we are finding them now, and in greater numbers than ever."

It's clear that the public needs to be more aware of the growing health risk.

France (over 10 times the incidence as the UK's)
"In France, the incidence has varied considerably from one region to another
and it is estimated between12,000 and about 15,000 the number of new cases per
year. "
(Compare this with about 2,500 per year over the whole of the UK including
Scotland)

"The eastern and central regions are most affected, with an incidence of up to
more than 200 cases/100,000 population in Alsace." link here 

Germany (148 times the UK rate)
"An incident diagnosis of LB was coded in 14,799 and 16,684 individuals for the
years 2007 and 2008, respectively, resulting in an incidence of 261/100,000
cases annually in the DAK cohort. Although the extrapolation of these numbers
may lead to an overestimation due to clinical misdiagnosis and/or miscoding, our
findings translate into 213,912 annual incident cases on a population-wide
scale, which suggests more LB cases in Germany than projected previously in the
available literature dealing with this topic." 
Taken from 
Clinical and Developmental Immunology
Volume 2012 (2012), Article ID 595427, 13 pages
doi:10.1155/2012/595427
Research Article: Evaluating Frequency, Diagnostic Quality, and Cost of Lyme
Borreliosis Testing in Germany: A Retrospective Model AnalysisLink here 

Netherlands (20 times as many cases reported compared with England and Wales)
Our nearest neighbour, the Netherlands, has 43 per 110,000 (slightly different
use of 110,000 instead of 100,000 there but I don't know why, that's at
least 20 times the rate supposedly in England and Wales.) Link here 

Belgium (45 times the rate reported in England and Wales)
Europe Journal of Clinical Microbiology and Infectious Diseases
2012, DOI: 10.1007/s10096-012-1580-3
"The overall Belgian incidence rates in the SGP practice in 2008–2009 were 18.65
(95% CI 17.29–20.08) per 10,000 persons for tick bites and 9.02 (95% CI
8.08–10.03) for erythema migrans."

This means 90.2 actual infections per 100,000. Link here 

Norway (about 40 times the UK incidence)
Depending on the region, up to 84 per 100,000. They have really detailed maps of
the worst areas on the west coast, and south coast, which is where everyone
lives) Link here  


Thanks to Denise Longman for sharing her research into these figures from our neighbouring countries.

TIME TO EDUCATE OUR NHS CONSULTANTS

I don't generally post personal stories of patients with Lyme disease but this one particularly touched me.

With permission I am only going to post a small section of it but do go to the full details here

Apart from highlighting patients' struggle with the disease and getting a diagnosis for their multi system problems it so highlights the crass comments our 'esteemed' medical professionals come out with, it is time they were taken to task over their behaviour and held to account for their comments to patients when clearly they are not informed of the complexities of Tick borne illness. Lyme Disease and the many co infections that can also affect us.

***************************************************************************** the ----establishment had so badly let me down and basically left me for dead at 36 years old !!

I went to London to the Infectious Disease clinic and the journey itself was hard as I am so poorly.

We were seen and told from the offset that, "we were there to listen to his opinion and that we would not be discussing Lyme until we had heard what he had to say" and i felt like a naughty schoolgirl that had been pulled up in front of the headmaster and was really tired of being treated so awfully when I was sick .

He asked about where I had traveled to tropically and then in Europe and then in the UK.... I reeled of the list of many places as I had travelled to all of these in my youth through bar work.

He then said "well you haven't been anywhere that is tick endemic and so its not Lyme" ..I, this time, had no patience to argue ,as the last time had taught me I was banging my head up a brick wall so I just sat there and silently disagreed with him in my head.

So he preceded to examine me which was very different to the previous 20 or so examinations I'd had by other doctors...and consisted of my lymph glands down my body and my spleen....he had said he would check my eyes as I was wearing the sunglasses but after he had done his tests he told me to go back and sit down and did not again look at toenails,rash or the eyes .

My husband then played him the video footage of me and my attack ...he watched about 10 seconds of it and said" that's enough "and then showed him the positive test results and he asked ..".who done these..."my husband replied "Igenex" and he said "well i can get a positive result for any test I want if I send it to the right place "and then told me that the "Americans are all mental and blame every symptom they have on Lyme" ....he said "don't get fixated with Lyme "...

to which I replied "I'm not fixated ..its just I have every symptom ..even definitive ones of Lyme ..positive test results that are non biased .. and the most important thing is ...if its not then what is it ??..

because I have seen nearly 20 doctors now ...who either tell me they don't know.. or we can tell you what its not ...or its a headache.... or a stiff neck ... or I may never get a diagnosis for this...or the last doctor who had the cheek to tell me there was NOTHING wrong with me...or its all in your head ....so believe me, I'm not fixated, I just haven't even been given anything else that it realistically could be ...and the fact that this is capable of evading normal routine tests, which is what's happened with me is surely proof enough to give antibiotic treatment a go

""He then said that, as this is an infectious disease clinic then he was going to run 3 tests of diseases that are of African nature..... and although the timing is out as to when I should have got ill with these after my return from Africa..... and the chances of me having them are next to none... he needed to rule them out anyway ....

to which I agreed ,but wondered why this wasn't checked for in the hospital on my admission on that first night ..as they were made fully aware of the fact we had not long returned from a tropical country and they did tell my husband that all possibilities had been checked for ...

Then we had the punchline delivered to us..in a very sinister way indeed ... considering he had just told me that if he wanted to ,then he could get a positive result for any test if he sent it to the right place.

..one of the tests that he was running was for an African borne disease that's VERY ,VERY RARE.. but the only treatment for it is to pump arsenic into your blood ..which results in 3 out of 5 death rate anyway...

I couldn't believe it ...one of the possible options that he'd managed to come up with rather than even acknowledging there is even a slight chance that it might be Lyme was of a rare disease that you had hardly any chance of surviving from the treatment..

.and it had sounded more like a threat ...

and I wondered why he had no worries about putting arsenic into me but I was having such a tough time getting antibiotics ..

I had also, before I'd found Lyme gone through, like I said every disease going ..and had studied African diseases especially hard, as we had spent a lot of time in Africa in the last two years and the symptoms and timing didn't match any of the diseases. .

So I'd agreed to his tests (or death sentence )that he had given me... and then I continued talking about Lyme .

This is when I believe ...he used the sentence that it had taken the doctors all these months to come up with ...of how to get around this situation, without actually telling me they would not treat me long term.

He said I am going to put you on a course of doxycycline for 3 weeks..if you get better then it was Lyme and you are cured...if not then it wasn't Lyme.

Here's how this interprets ...3 weeks course of doxycycline does treat and cure Lyme disease if caught in the early stages ..ie after the bite of an infected tick ..or the trademark rash being present ...after that if left untreated it grows in your body and will eventually turn into stage 2 which is harder to treat... and if still not detected it will go to stage 3 ...when it crosses the blood borne barrier and enters the brain and internal organs and this is where I am at and is extremely difficult to treat

and the NHS are not willing to invest the time or money to see if long term IV antibiotics make a difference...even though it has been proved by real people suffering with the disease at late stage... who have had to raise money and sell there homes .beg and borrow to find theirself a LLMD (Lyme Literate Medical Doctor) who specialises in the treatment of Lyme and its co infections and understands the complexity of the disease and of the treatment plan ,for life .

This is the aim of this appeal... I need to find myself a LLMD who will treat me and this will be outside the NHS and possibly outside the UK ...

Thankyou for reading my story ..please educate yourself and your family and friends on Lyme....... because if I can stop this happening to someone else it will do some good ...please if you are on facebook join the group that was my daughters idea and my husband set up ...called Would you pay a £1 to help save my mummy's life?..pass it on to your friends and ask them to pass it on and so on ...the more people that join ..the more awareness there is and it also gives my little girl some hope and makes us not feel not so totally alone in this situation http://www.facebook.com/profile.php?id=1109650270&ref=search#!/group.php?gid=134675306560444&ref=mf thankyou so much if you would like to donate click on the link below or if you would like to send a cheque ..please make payable to ...The Sonia Smith Appeal Fund 29 St Johns Rd
Bletchley
Milton Keynes
MK3 5DU
England
or for further queries contact soniasmithappeal@aol.com

****************************************************************

Initially Sonia was admitted to hospital with a suspected Brain Tumour or stroke but when tests showed nothing she was dismissed with 'It's all in your head' despite symptoms of paralysis, Bells Palsy, verbal stuttering and difficulties speaking, light and sound sensitivity to mention just a few of her symptoms.

As most of us find with Lyme Disease here in the UK like elsewhere in the World getting diagnosis even with positive Igenex tests is no guarantee that NHS will treat with antibiotics. Quite remarkable that this ID specialist would consider IV arsenic for some rare African Disease and yet simple antibiotics even oral antibiotics have significantly improved the lives of many patients with a clinical diagnosis of Lyme Disease let alone a serological diagnosis.

All these consultants in denial should listen to the recent presentations at the Institute of Medicine Workshop showing how complex all these tick borne diseases are to test for let alone to treat. Click here

A CALL FOR MORE AWARENESS

A FATHER-OF-TWO from East Yorkshire has told how he is still suffering a range of horrendous symptoms from Lyme Disease – 12 months after being bitten by a tick while walking in the Lake District.
Kevin Slater, 49, has spoken out in a bid to increase awareness of the illness, both amongst the general public and medical professionals in the UK.
“The effects of this disease are so horrendous that I made a promise to raise as much awareness as possible to try to prevent other people, especially children, from becoming infected,” he said, claiming there was a severe lack of knowledge and understanding within the NHS of the disease and appropriate methods of treatment
“It is crucially important that early treatment with aggressive antibiotics is given to stop the spread and eradicate the bacteria in the early stages.
“There should be public warnings about Lyme Disease in parks and open spaces so that people can take measures to protect themselves.
“We often see public notices in doctors surgeries warning about the dangers of disease such as malaria should we travel abroad. However, there is nothing mentioned about Lyme Disease, which exists in our own country.”
The Press reported last autumn how Mr Slater, a self-employed engineering consultant from near Pocklington, was bitten by a tick, an arachnid that cuts through flesh with barbed teeth before inserting a needle-like feeding tube, when he was walking in Grisedale Valley, Patterdale, during last August, probably while he was walking through a patch of bracken.
His illness developed into encephalitis -inflammation of the brain that can cause brain damage, blindness and even death.
He said today that over the past year, his symptoms had included fatigue, low grade fevers, swollen glands, stiff neck, myalgia, chest and abdominal pain, sleep disturbance, poor concentration, depression, back pain, blurred vision, tinnitus, headaches and dizziness.

To read the full article and comments click here

CANOEIST AND CLIMBER WITH LYME DISEASE

Tick 'em off your list
http://www.thesouthernreporter.co.uk/outdoors/Tick-39em-off-your-list.6457265.jp

Canoeist and climber Allan Mitchell spent three years suffering a range of debilitating and increasingly serious symptoms before Lyme disease was diagnosed.
Published Date: 05 August 2010
By Sally Gillespie

A KEEN canoeist and holder of a mountain climbing record is on a mission to warn other outdoors enthusiasts about Lyme disease.
The debilitating tick-borne illness blighted his life for almost three years as medics struggled to diagnose the changing symptoms.Former KOSB army instructor from Lilliesleaf, Allan Mitchell, said: "I had always been as fit as a flea. I'm the kind of person who shrugs things off. I thought it would go away, but it never did, it came back."The father-of-five has had to fight for his life with viral meningitis, a symptom of Lyme disease."I thought it was just a headache. I was rushed to hospital and given a lumbar puncture. I was very, very unwell for a few days," he told TheSouthern.He was later rushed to hospital with oxygen levels in his blood lower than people with the lung disease COPD."I was quite seriously ill. When the oxygen in your blood drops, your blood goes acidic, which causes a lot of pain in your muscles."But most worrying was not knowing what was wrong with him, said the 45-year-old."My wife thought I was going to die. I had periods of generally being all right. It can affect you mentally. You can see how some people are driven off the edge." This from the man who climbed Ben Nevis 20 times (nearly 21 - he was just yards from the top when bad weather forced him back) in a week in 2005 to gain the Guinness world record for the most feet ascended and descended on a mountain in one week.He remembers the tick bite which gave him Lyme disease nearly three years ago."It quickly became red and swollen with a strange rash."The symptoms - sleeplessness, fever, hot joints, muscle spasms - kept recurring, but each time doctors said it was a virus and likely to go. Tests showed the spasms, cramps, muscle twitching, tinitis and other symptoms were not from a neurological disease.Next he got meningitis and recovered. A second neurological opinion said the "benign muscle twitching" would go in time. A week later, he couldn't breathe during the night and was rushed to hospital. It was then that the low blood oxygen levels were identified. But doctors remained puzzled as to the cause of the problem. "At this stage I really thought I was going off my head and was in total despair, wondering what was wrong with me," he said.It was then that he saw Dr Jeff Cullen at Selkirk hospital, who suggested testing for Lyme disease.Even post-diagnosis, it has been a fight. Although the antibiotics worked initially, he has had two relapses.

CLINICAL JUDGMENT FOR MULTISYSTEMIC ILLNESS

The Need for Clinical Judgment in the
Diagnosis and Treatment of Lyme Disease


Elizabeth L. Maloney, M.D.



extract


The wide array of Lyme disease symptoms is consistent with Borrelia burgdorferi’s ability to infect multiple organ systems; nervous system involvement creates the potential for varied and atypical symptoms. Common symptoms include: EM rash, fever, fatigue, headache, neck pain, joint or muscle pain, paresthesias, memory impairment, weakness of facial muscles, mood disorders, neuropathic pain.



further extract


It is the multisystemic nature of the illness that provides physicians
with useful diagnostic information. In fact, with the exception of an
isolated EM rash or swollen joint, patients with symptoms restricted to
a single system are unlikely to have Lyme disease. Recognizing the
potential for disease is different from “seeing it everywhere.” Failure
to recognize Lyme disease may lead to serious harm, as antibiotics are
delayed and the infection is unchecked.


The nonspecific nature of many Lyme disease symptoms leads
some to suggest that such symptoms hold no diagnostic value. Lyme
disease is like many other illnesses that present with nonspecific and
often subtle symptoms—symptoms that may go unrecognized by
physicians. Examples include hypothyroidism, ovarian cancer, and
acute sub endocardial myocardial infarction. What gives the
individual symptoms of Lyme disease value is their occurrence in
clusters; a single symptom means little but four or five may, for all
practical purposes, make the case. Just as abdominal bloating, urinary
urgency, and pelvic pain raise “red flags” for gynecologists, the
combination of fatigue, paresthesias, arthralgias, and memory
complaints presenting in a single patient commands the attention of
physicians aware of these potential Lyme disease symptoms.


Steere et al. noted that patients with early Lyme disease who
lacked an EM rash presented with an average of four or more
symptoms. Fever, chills, malaise, and myalgia, all nonspecific, were
present in 46%-71% of the patients with definite Lyme disease alone.
In this group, it was the clustering of nonspecific symptoms in the
appropriate setting that led to the correct diagnosis of Lyme disease.


Logigian et al. also noted the nonspecific nature of identi-fying
symptoms: “The most common form of chronic central nervous
system involvement in our patients was subacute encephalopathy
affecting memory, mood, and sleep, sometimes with subtle
disturbances in language.


Diagnosis of this condition may be difficult
because the typical symptoms are nonspecific” [emphasis added].


To provide a clinical level of diagnostic sensitivity higher than two tier
testing, physicians need to recognize the symptom clusters and
maintain a high index of suspicion for Lyme disease.



To read the full article click here

RAMBLERS BEWARE OF TICK BITES

To Watch this tick in motion click here which will take you to the video on Lyme Disease Action Facebook page.

WILDLIFE EXTRA NEWS

see the full article here

Watch out for ticks & Lyme disease now the warm weather is here

07/06/2010 12:13:44

Lyme disease on the increase in the UK

Soon summer will be in full swing and many of us will be spending more time wildlife watching, walking, climbing, cycling and camping. Few, however, will be aware of, or indeed prepared for, the hidden danger of tick bites and what can come with them - Lyme disease.
The highest risk period for tick bites is from May to October when the tick is most active and feeding.
Ticks - tiny (the size of a full stop on an A4 page) blood-sucking parasites - are present in woods, moors and parks throughout the UK; London parks are no exception, and tick numbers are on the rise due to changing habitats and climate. Lyme disease, caused by the bite of an infected tick, is also on the rise, and is found throughout North America, across the UK and Europe, and Scandinavia - so it's important for everyone, at home and on holiday, to know what to look out for and to seek early treatment if necessary.

What is Lyme disease and what are its symptoms? Lyme disease is caused by the bite of an infected tick and causes a wide range of symptoms which may include a circular red "bull's eye" rash, headaches, a stiff neck, extreme fatigue, muscle and joint pain, and disturbances of sight, hearing, digestive system and sleep.

My comments on the above article included :-

It took 5 doctors and 3 Rheumatologist 4 years to diagnose me. I was diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Musculo skeletal disease, and eventually Lyme Disease. A chance course of antibiotics significantly improved my symptoms and led my GP to suspect Lyme Disease. There had been other cases of Lyme disease at my surgery. I had presented at the surgery at times of bites, bulls eye rashes, summer flu and migrating arthralgias before chronic illness and disability set in all had been documented on my records.