Tuesday, 30 November 2010
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
or for further queries contact firstname.lastname@example.org
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
Saturday, 27 November 2010
Dr. Jones speaks on the Lyme Autism Connection at the recent LIA (Lyme Induced Autism) Foundation conference in April, 2008. Full DVD set is available from http://www.lymebook.com/autism
Also other interesting videos from Dr Bhakta can be seen here
Dr Bransfield published about The association between tick-borne infections, Lyme borreliosis and autism spectrum disorders here
'Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders.
A dysfunctional synergism with other predisposing and contributing factors may contribute to autism spectrum disorders by provoking innate and adaptive immune reactions to cause and perpetuate effects in susceptible individuals that result in inflammation, molecular mimicry, kynurenine pathway changes, increased quinolinic acid and decreased serotonin, oxidative stress, mitochondrial dysfunction and excitotoxicity that impair the development of the amygdala and other neural structures and neural networks resulting in a partial Klüver-Bucy Syndrome and other deficits resulting in autism spectrum disorders and/or exacerbating autism spectrum disorders from other causes throughout life.
Support for this hypothesis includes multiple cases of mothers with Lyme disease and children with autism spectrum disorders; fetal neurological abnormalities associated with tick-borne diseases; similarities between tick-borne diseases and autism spectrum disorder regarding symptoms, pathophysiology, immune reactivity, temporal lobe pathology, and brain imaging data; positive reactivity in several studies with autistic spectrum disorder patients for Borrelia burgdorferi (22%, 26% and 20-30%) and 58% for mycoplasma; similar geographic distribution and improvement in autistic symptoms from antibiotic treatment.
It is imperative to research these and all possible causes of autism spectrum disorders in order to prevent every preventable case and treat every treatable case until this disease has been eliminated from humanity.'
Medical News: Docs Organize to Promote Unproven Therapies They Believe In - in Public Health & Policy, General Professional Issues from MedPage Today
The above link from Medpage is a well written article worth reading by anyone with Lyme Disease one of the videos is of an interview with Dr Bransfield, Dr Raxlan and Dr Cameron and well worth watching. I was unable to embed on this blog but please click on the above link and also watch the video.
For parents of children with Autism you might also be interested to read the article as it goes onto discuss the problems of treatment of children with Autism.
Thursday, 25 November 2010
HealthWatch: Bay Area Lyme Disease Patient Fights Insurer « CBS San Francisco- News, Sports, Weather, Traffic and the Best of SF#comment-11348#comment-11348#comment-11348#comment-11348#comment-11348#comment-11348
Found through CALDA website here
Tuesday, 23 November 2010
Richard Ostfeld, Ph.D. Disease Ecologist
Cary Institute of Ecosystem Studies
'We live in an age of emerging infectious diseases. A recent study by Jones et al demonstrates that no fewer than 335 new infectious diseases of humans have emerged since 1940.
Of those Infectious Diseases about 60% of them are Zoonotic, meaning that the pathogen replicates within and is transmitted from non humans vertebrate species to humans.
Of these Zoonotic diseases about 72% are from wildlife with the remainder coming from domestic animals of various kinds.
Fully 30% of the newly emerging diseases are vector borne including most of the Tick borne diseases we will be talking about today and tomorrow and throughout the 20th Centuray and into the 21st Century the rate of emergence of new Infectious Diseases of humans has increased.'
The above were the opening remarks by Richard Ostfeld at A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term
To view and listen to the whole presentation click here
Much of the controversy over diagnosis and treatment of Lyme Disease comes back to the old problem of definition of Lyme Disease and it is interesting to see how the ILADS conferences (London and USA) moved away from that narrow definition of Lyme Disease, (Dr Bransfield's presentation of the Decade of the Microbe) as they are finding many of their patients are multiply infected with different organisms.
Dr Richard Horowitz interviewed for a TV program here refers to MCIDS - Multiple Chronic Infectious Diseases Syndrome found through CALDA website here
I was lucky that my Chronic symptoms of Arthritis and muscle weakness which developed following tick bites and Bulls eye rashes responded so well to long term antibiotics although it took 4 years for my GP to realise the connection to the tick bites.
I never tested fully positive on any of the two tests given but listening to the Institute of Medicine Workshop it seems that many of the tick borne illnesses have problems over testing and many of the available tests are not given to patients like myself who are chronically ill.
Through Eurolyme I am in touch with patients who have Neurolgical symptoms, some diagnosed with Multiple Sclerosis, Parkinson's and Motor Neurons who are responding well to long term antibiotics.
So whilst science is still evolving over these complex emerging diseases it is best to keep an open mind and see what works well for us as individuals.
Sunday, 21 November 2010
Dr. Conant at the recent ILADS conference 2010
"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."
"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme Disease)
"Focus on research, not suffering."
"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.
"Lessons learned from AIDS", Dr. Conant
"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.
"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time.
“Develop coordinated activism" How do we best get funds to study this disease?
To read more visit The CFS Patient Advocate blog here
Saturday, 20 November 2010
From Plos One link here
Chris D. Crowder1, Heather E. Matthews1, Steven Schutzer5, Megan A. Rounds1, Benjamin J. Luft3, Oliver Nolte4, Scott R. Campbell2, Curtis A. Phillipson1, Feng Li1, Ranga Sampath1, David J. Ecker1, Mark W. Eshoo1*
1 Ibis Biosciences, Carlsbad, California, United States of America, 2 Suffolk County Department of Health Services, Yaphank, New York, United States of America, 3 Department of Medicine, State University of New York at Stony Brook, Stony Brook, New York, United States of America, 4 Laboratory of Dr. Brunner, Constance, Germany, 5 Department of Medicine, University of Medicine and Dentistry of New Jersey, Newark, New Jersey, United States of America
Lyme disease, caused by various species of Borrelia, is transmitted by Ixodes ticks in North America and Europe. Studies have shown the genotype of Borrelia burgdorferi sensu stricto (s.s.) or the species of B. burgdorferi sensu lato (s.l.) affects the ability of the bacteria to cause local or disseminated infection in humans.
We used a multilocus PCR electrospray mass spectrometry assay to determine the species and genotype Borrelia from ticks collected in New York, Connecticut, Indiana, Southern Germany, and California and characterized isolates from parts of the United States and Europe.
These analyses identified 53 distinct genotypes of B. burgdorferi sensu stricto with higher resolution than ospC typing. Genotypes of other members of the B. burgdorferi sensu lato complex were also identified and genotyped including B. afzelii, B. garinii, B. lusitaniae, B. spielmanii, and B. valaisiana.
While each site in North America had genotypes unique to that location, we found genotypes shared between individual regions and two genotypes found across the United States.
Significant B. burgdorferi s.s. genotypic diversity was observed between North America and Europe: only 6.6% of US genotypes (3 of 45) were found in Europe and 27% of the European genotypes (3 of 11) were observed in the US.
Interestingly, 39% of adult Ixodes scapularis ticks from North America were infected with more than one genotype of B. burgdorferi s.s. and 22.2% of Ixodes ricinus ticks from Germany were infected with more than one genotype of B. burgdorferi s.l.
The presence of multiple Borrelia genotypes in ticks increases the probability that a person will be infected with more than one genotype of B. burgdorferi, potentially increasing the risks of disseminated Lyme disease.
Our study indicates that the genotypic diversity of Borrelia in ticks in both North America and Europe is higher then previously reported and can have potential clinical consequences.
Friday, 19 November 2010
09 October, 2010 11:54:00
( click here for Dr Martz story and also here for earlier posts mentioning him)
The conference was a huge success thanks to the innumerable contributions by board members, vendors, volunteers, donors, hotel staff, ILADS webmaster, program committee members – and especially our Executive Director, Barbara Buchman, who lived and breathed ILADS 2010 coordination and details from conception through its conclusion.
Go to ILADS here to read the full report.
Chronic Lyme Disease and Multiple Chronic Infectious Disease Syndrome
The Guest Speaker Scientific Sessions explored clinical and pathophysiological mechanisms of other infectious diseases (e.g., Chlamydia, HHV-6, HIV, XMRV) that may apply to the syndromes of Chronic Lyme Disease, in addition to specific roles of cytokines and biofilms.
They also addressed strategies, methods, and resources needed to generate credible clinical studies and publications essential to achieving scientific acceptance of the Chronic Lyme concept.
A DVD containing most of the conference presentations is available from ILADS www.ilads.org for only $40.00
Wednesday, 17 November 2010
Director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine
Director of the Lyme and Tick-Borne Diseases Research Center
Columbia University Medical Center
Summary from Brian Fallon's talk at the IOM: here 13 mins in
A European study showed 50% Neuro Lyme pateints had persistent symptoms after 3 years compared to 16% of EM patients
Lyme does not have the same trigger points as Fibromyalgia patients
When requesting patient criteria for chronic Lyme it is pointless asking for only those with IgG positive WB as many would not match the criteria
Need more studies outside the use of antibiotics to track improvements (ie a whole management look at Lyme in line with other conditions)
Talks about doctors calling patients with symptoms after 4 weeks treatment as having a somatic disorder - says this can be down to lack of knowledge, the belief that 2-4 weeks is sufficient, lack of recognition of the chronic form of disease or just plain hostility towards the patient
Talked about various studies that showed that fatigue & pain was helped by IV treatment. Criticised a study (Krupps) that claimed that cognitive function was not improved when people were recruited for fatigue & not cognitive related issues, so he reasoned that if the subjects had little cognitive problems to start with then there's no surprise if they didn't improve anymore than the control group
What do we know about non antibiotic treatment therapies? We know nothing there has not been one study and that is absurd these patients are suffering so much and we don’t have a single study except for a few antimicrobial but nothing outside of the realm of antibiotics.
Why are there persistent symptoms?
it could be
reinfection from a further tick bite
re activation of latent dormant infection
Physiologically active but post infectious spirochetes
Widely distributed effects post infectious phenomena
Neuro transmitter changes
Why might it be labeled as a somatic illness, because of the limitations of the physician believing that two to four weeks of antibiotics is always curative. Assuming any symptoms after antibiotic treatment are due to other causes.
Or a lack of recognition that post infectious symptoms can go on for years where you can have chronic fatigue cognitive symptoms and pain
Or could be that there is hostility to chronic illness because some physicians can’t deal with that.
He believes that the NIH to set up a specific sub-committee solely to look at chronic Lyme infection...
Tuesday, 16 November 2010
The bacterium Borrelia burgdorferi was identified in the USA in 1982, and was connected to an epidemic of arthritis among children in the small town Lyme a few years earlier. It was known that the bacterium was transmitted by ticks. In Europe there were observations that connected tick bites to the occurrence of the characteristic dermatological conditions EM and ACA, but the fact that this newly discovered spirochete was the causative agent of illness was new, also in Europe. Several scientists took interest in this new spirochete, and Dr. Bozsik was one of the first to engage in the field. He was the first to suggest the term Lyme Borreliosis, this was accepted and immediately taken into use.
What was your background, why did you go into the work with Lyme borreliosis? The most interesting and promising aspect of this new discovery was that there is a disease that can damage the whole body, developing into a systemic disease, and the causative agent could be killed with common antibiotics. This gave an incomprehensible possibility to cure people suffering from obscure symptoms without known causes, so I decided to do research in this field. Before this I had been working with the complement system and serology in Syphilis diagnostics. The Syphilis bacterium is also a spirochete, and has many similarities to Borrelia. At this time I was head of the serology laboratory at Johan Bela National Institute of Hygiene. An infectious diseases specialist at the institute asked me to do something on the new spirochete, and we started to adapt methods for serological investigations.
We know that a bitter conflict has developed between wings, where physicians at either side have very different opinions on Lyme borreliosis. This has been very expressed in the USA. Unfortunately we have also found this conflict to be present in Europe.
How was the situation initially, when did this conflict start? During the first years there were open- hearted and good conditions for work, and there was a friendly attitude at the international congresses. The scientists wished to share experiences and develop new knowledge. In short words; we fought with Lyme borreliosis and not with our Colleagues. In 1990, at the international conference in Stockholm, the conflict came to the surface. It was during a round-table discussion that developed to a fierce debate. It almost ended in a physical fight! At the time professor Klaus Weber from Munich, the president of the round-table discussion, closed the debate by saying “We are here to help patients suffering by Lyme borreliosis, not to fight each other”. The disagreement arose from the different opinions among the experts regarding what was the most efficient antibiotic for treatment of Lyme borreliosis.
The question regarding treatment is still a matter of debate, as we all know. Health authorities in almost every country suggest treatment according to guidelines from IDSA in the USA. This happens even though it is clear that the situation is very differing in Europe and USA. In Europe we have at least three substrains, perhaps five or more, of Borrelia that cause human illness. In the USA there is one strain that is dominating. Standard treatment for borreliosis in most countries is 2-4 weeks of monotherapy with ceftriaxone, doxycyklin, or eventually Penicillin V in early stages.
Dr. Bozsik, You have been a pioneer in the development of combined antibiotic therapy for Lyme borreliosis, can you say something about the background for this work? It was obvious that monotherapy in many cases did not give a satisfactory result, and I started to think that the combination of different antibiotics could give a synergistic effect. With the help of colleagues in different Institutes I did some studies In vitro, with different strains of Borrelia in culture. We tested fluoroquinolone in combination with different other antibiotics like doxycyclin, clarithromycin etc. In all cases we saw a marked synergy, even though Dr. Wilske had presented In vitro-results at the Stockholm conference showing that ciprofloxacin was ineffective alone against Borrelia. We also saw that some patients had good effect of their treatment while others did not improve much. Professor Neubert presented results from In-vitro tests, showing that different Borrelia strains had different susceptibility to different types of antibiotics. Some time later, at the conference in Vienna in 2005, it was discussed with Brorson if tinidazole could be an efficient drug to include in the treatment regime, to target the Gemma (spheroplast, “cyst”-like stage).
The principle for the development of my treatment schedule has been to use ciprofloxacin in combination with another antibiotic to utilize the synergistic effect that was demonstrated in the laboratory studies, and in addition to include tinidazole for the Gemma. In our practice we saw that the patients had cyclic variation in their symptoms in periods of 3-4 weeks. The treatment period should last for 2-3 times the duration of the individual cycle for the patient; that is approximately 8 weeks. We experienced that clinical improvement could continue for a long time after ending the treatment, 2-4 moths even 6 monthes after. However, if the symptoms continue or flare up, the patient may need repeated treatment with a different antibiotic. It is important to know what strain of Borrelia the patient is infected with, in order to choose the best antibiotic for the treatment schedule
It was of course important to investigate the effect of the combined antibiotic treatment in a clinical practice, and not only in the laboratory. Initially I had contact with a Hungarian group of physicians who wanted to try this treatment schedule for some of their patients. Gradually we collected comprehensive data from a group of 250 patients suffering from chronic Lyme borreliosis here in Hungary. We followed these patients for 5 years, on average, and half of them were cured after one round of treatment, while others needed one or more repeated treatments. Nearly all of them were cured, not seeing the definitive pathoanatomic lesions. I have also realized that it is very important to strengthen the immune defense at the same time as giving the patient antibiotic treatment.
What the patients experience today is that it can be very difficult to get a correct diagnosis, to prove there is an ongoing Borrelia infection. The problem seems most severe for the long term ill patients. The experts accept that the immune response can be low in the early stage of the illness, but they claim that serologic testing is all reliable in the late stages of illness. In theory they can admit that seronegative borreliosis may exist, but they say it is extremely rare. In their everyday practice a negative test is used to rule out illness.
How do you think about these questions regarding interpretation and use of serologic tests, and eventual other test methods? The experts have forgotten what it means in everyday practice that serology is an indirect diagnostic method. Seronegativity means that the method (!) cannot demonstrate the presence of antibodies, -for some or other reason. It does not mean that Lyme borreliosis is not there. One should know that there is a period in the early stage of illness where production of antibodies is low, but there is also such a period of low antibody production in the late stage. That is why it is very useful to have additional methods to demonstrate active infection. I have been working a lot with classical dark-field microscopy, and I realized there was a need for methods to distinguish between the spirochete and artefacts in the preparations. I have developed a reagent (DualDur) that is added to the blood sample. This reagent makes the other objects rigid and motionless and there are no artificial products, while the Borrelia are preserved and still moving normally.
Dr Bozsik is now retired, but he is still working full time as a volunteer in Lyme Borreliosis Foundation Hungary, an organization that he founded in 1991. He has close contact with patients, physicians and scientists in several countries, and spends his time helping others. His heart is with the patients, and on every Sunday he burns a candle for the Lyme patients and their physicians.
Written by Gerd Berge, Norwegian Lyme Borreliosis Association
Sunday, 14 November 2010
by Ellie Marshall
I was a 42 year old healthy woman with an active full life with a wonderful husband David and two kids, Sarah and Jack until October 2002.
I was sitting having dinner, when suddenly I felt a stab/tingling-like jolt in the back of my neck, chest pains, my heart started racing. I physically felt very weak, my body felt very cold and I felt very dizzy.
I went outside and sat down trying to catch my breath. I could not get the symptoms to stop. It felt like my body was in a bubble. I felt pain from between the shoulder blades all the way up the spine to the neck.
I had to go to the bathroom, I had diarrhea.
I tried to settle myself down, so I went to bed. I was feeling so weak. I got into bed and my body started shaking (like I had the chills), I got a hot water bottle and tried to relax. I was scared. I did not know what was happening to me.
My body was tingling all over. I thought I was gonna die.
The next day I went to my doctor, (in Hexham) she put me on a heart monitor, and did a scan of the heart, everything was fine.
My doctor gave me beta blocks for the palpitations, then sent me home. But my symptoms did not go away so for the next few years it seemed like I was going to the doctor at least once a week.
My GP did sent me to different specialists according to my varying symptoms (i.e.,: heart, back, etc). My GP took loads of blood tests and they all came back normal. The GP could not figure out way I was feeling the way I did, it was a mystery to them.
At one point my GP thought I was depressed, so she put me on anti-depressants, saying they should help. They did not help, in fact, I think it made many of the symptoms worse, so I stopped taking them.
My whole body ached all the time. I remember going to the circus with my family (even though I really did not feel like going) and my arms hurt so much I could not even clap my hands, just raising my arms ached.
I really did not feel like doing anything much, I was tired all the time, and I was scared to travel far from the house. I was in so much pain. The only time I was out of pain was when I was sleeping, unless I was woken up by heart palpitations. I went to A and E so many times, but they could not find anything wrong.
Then on morning of 26th June 2006 while doing my ironing, I happened to have a TV show, “This Morning”, on in the background. I enjoy watching that show while getting things done around the house.
Anyway, this particular day, Dr Chris Steele was talking about Lyme Disease, and some of the more regular and debilitating symptoms included, chest pain, back pain, terrible headaches, pressure in the head, painful/stiff neck, blurry vision sometimes, seeing spots, buzzing/ringing in the ears, diarrhea, hiatus hernia, shortness of breath, rib soreness, unexplained chills, night sweats, heart palpitations, unexplained shaking, fatigue, numbness in body, tingling, dizziness, lightheadedness, mood swings, feeling like losing mind, stammering speech, difficulty in thinking sometimes, memory loss, loss sex drive, weight gain, pain migrates to different to parts of body, always feeling unwell in general.
Well, after the show I went on to the internet and got some more information about Lyme Disease.
My husband and I remembered a bite of some kind on my arm. I thought it was a mosquito bite, although now looking back at it, the bite ‘ached’ more than it itched. At the time it never dawned on me that it may be related to Lyme Disease as it was not something I even knew about.
So for the first time in 4 years I was hopeful about these findings – connecting some of the dots that none of the professionals seemed to be able to connect.
Maybe I finally figured out what is wrong with me. (I COULD FINALLY BE CURED).
Well, I went to see my GP yet again, but this time armed with the knowledge of Lyme Disease, but she refused to give me the test.
She told me that Lyme Disease is not in the UK, it is an American disease, even though I had the bite on the arm and most, if not all of the debilitating symptoms of Lyme Disease.
Instead she offered me some counseling and another prescription for antidepressants. At that moment, I knew this doctor was missing the boat. I had nothing whatsoever in my life to be upset about, nothing to be depressed about (other than all of these symptoms and the pain) and couldn’t imagine how she leapt to that conclusion.
My GP stressed to me I had every test, X-ray, MRI, CT scan and they all show normal, except the MRI scan of the brain it showed small vessel disease (white matter).
So maybe I should just get on with my life.
So I left without a blood test.
I was totally confused and I feel like someone burst the bubble of hope for me.
I never thought for a moment that a doctor would refuse a simple blood test even if there was a remote possibility of something like this.
How could that be?
I never went back to that GP. I knew she wasn't going to be able to help me.
Dr Chris Steele spoke about Lyme Disease in the UK, and here my own GP tells me different.
So how come I have the symptoms of what I think is Lyme Disease then.. I sometimes wonder if all the doctors I've seen knows what it is like to go through something like this. I am frozen in life not wondering what will happen next.
Will anyone ever find out what is wrong with me.
This all seems like a very bad nightmare.. The pain, the sweats, the crying without cease, the feeling so sick, so sick I could barely reply when spoken to, sudden fevers, the pains in my bones, feeling like I cannot go on anymore...
Everyone that sees me says I look fine from the outside. but I am in so much pain inside...
I changed GP in the bid to get an answer for my illness, but no such luck. I continued to go to specialist after specialist – 25-30 of them from 2002-2008 (heart, back and pain specialists, Rheumatologist, Neurosurgeon, Neurologist - you name it, I went. (I was lucky enough to have private insurance through my husband's employer).
Many doctors tried.
None had answers.
Some thought they had answers – one thought it was a trapped nerve at the top of my spine for which I had surgery.
Another told me to have a hysterectomy, so I did. I was desperate for some kind of relief.
Another specialist diagnosed costochondritis;
another specialist saw, through an MRI, that I had small vessel ischaemia, which I now know to be related to Lyme Disease.
I even had a Lumbar Puncture because of the headaches and found that the opening pressure was high and prescribed yet more medication which gave no relief.
As the years went on my headaches, chest pains , etc., got worse.
Then in 2008, 6 years after this all started, I asked a new Neurologist if he thinks it could be Lyme Disease.
I always kept the thought of Lyme Disease back in my mind. He did not think it was, but be said he would write to my GP and ask for a (NHS) Lyme test to be given.
I told him that in 2005 I asked for a Lyme test, but had been refused the test from my old GP.
While I was waiting for my Lyme test from my GP, I did more research on the internet and I found a Lyme Disease support group called EuroLyme.
I decided to post my story and my symptoms to the support group, and within a few hours, I received tons of e-mails back, all agreeing that I have the symptoms of Lyme Disease, many describing their own frustrations and experiences dealing with a medical community fundamentally ignorant of Lyme Disease and it's symptoms.
The support group recommended that I go see a Lyme Literate Specialist rather than relying on the NHS-approved blood test, as from their experience the NHS-approved blood test comes back negative 95% of the time.
It has something to do with the compounds they use for testing. It is not accurate enough.
Anyway, 21st Feb. 2008, I went to a Lyme Literate Specialist. He identified by microscopic examination of my blood, a borreliosis.
This result, combined with my symptoms was sufficient for him to diagnose Lyme Disease.
In the 6 years of suffering I finally felt heard.
Of course, I was furious with all the GP's, and specialist I went to, too.
He immediately prescribed an antibiotic while he continued to culture and examine my blood samples. He then prescribed a more specific antibiotic based upon his findings. He claimed that I should some improve in 6 - 8 weeks, although, because I have now had Lyme Disease for so many years now, it may take longer.
Just after that appointment, I received my appointment to see the local nurse for a Lyme test as requested by the Neurologist I saw.
I really wanted to take the NHS test, as I wanted to see what my results would be. More than anything, I was curious about the results, given that I had heard so many bad things about the NHS-authorized Lyme test. Even though I know all about the NHS test. I had the NHS blood test, and it went off to one of our local hospitals.
I then started my Lyme treatment from the Lyme Specialist, while I waited for my results from NHS.
Well, weeks went by and no results, so I contacted the hospital my blood went to, and the nice gentleman I spoke with said they were storing my blood, because they had no idea what they were testing for, as the nurse/GP did not state it on the forms, and they were waiting for my GP to contact them.
Well, I told the gentleman that it was my blood, I told him it needed to be tested for Lyme disease, he then told me that Lyme Disease testing is done at Southampton, and he would send my blood to Southampton for testing.
Again weeks went by, and no results. I called Southampton, and they told me they had no record of receiving my blood. This was unbelievable. I was angry.
It took years to finally get a NHS test and it all went wrong. I started thinking that maybe my GP really did not want me to be tested. So I gave up getting this blood test done. The GPs couldn’t even get this right.
I continued on my treatment from my Lyme specialist.
In June 2008, I found out there was a Lyme Specialist closer to my house, so I went to see him, and again he agreed with the other Lyme Specialist I saw.
With all the symptoms I was having was enough to diagnose me with Lyme disease. This specialist also did his own Lyme blood test, but it was sent to the States for testing.
A few weeks later, the results came back as full on Lyme Disease and loads of co-infections. My new Specialist wanted me to have IV treatment ASAP, so he would arrange for a Hickman Line and he would write my GP about the necessary medication.
The day I was supposed to get the Hickman Line put in, I received a letter through the post from my GP saying she did not agree with the IV treatment, and she would not authorize the medication.
I asked her why she would not, and she told me that I was never diagnosed with Lyme disease from NHS, and she did not want to put her License on the line.
I did try to explain to her that I tried to get a NHS test but the blood never went to the right hospital to be tested. She did not say much.
My Hickman Line had to be cancelled that day. However, a few weeks later I finally got the line, and my IV treatment started July last year, nearly 7 years after starting to get ill. I had the IV treatment for 12 weeks. I had a private nursing company come to my house everyday. My private insurance company covered the cost.
My Lyme Specialist kept my GP informed of my treatment but it seemed to me that she was not interested.
All I could think about was all of the people who did not have private insurance and who could not find someone who could actually help them rather than think they are crazy and prescribe anti-depressants.
After my IV treatment was finished, my Lyme Specialist prescribed 3 months of oral medications. They cost me £900 as my GP would not give them to me on NHS. This I did have to pay for, as my private insurance does not cover oral medications. I had to take the meds, as it was all part of my treatment.
I finished the meds just this past Jan, 2009.
My Lyme specialist was very happy with my progress, at this moment, so he me off all medications. He wanted to see how I would do without the medications. However, 3 months later, I started getting some of the symptoms came back, so my Specialist put be back on medication.
My specialist was not surprised with the symptoms coming back, as I had Lyme disease for a long time, it will take a while to clear.
He had told me previously that it was possible this would happen.
I have had Lyme Disease for so many years now and these borreliosis don’t die off easily. This could take some time.
In the meantime, I keep educating myself, by watching a movie called, “Under Your Skin”, a documentary on Lyme Disease. It was hard to watch, especially because people are dying from this completely treatable disease, but I was glad I did watch it. There are so many symptoms, so many people who have this, it is unreal. And yet, there is so very little education of the medical community on this disease.
In November 2008 my GP offered me to see an Infection control specialist in Newcastle General Hospital I went to see the Dr, (as I really wanted to make peace with my GP). The Dr wanted to do his own NHS Lyme Disease test. (my Lyme Specialist told me of the risks of taking the NHS test especially since I already started my treatment (IV and then oral medication, and I was on the oral medications at the time I was offered the NHS test by the Dr ).
The Lyme Disease results came back negative. (no surprise to that result) I did call a Dr at Southampton (the lab that does the NHS test), and asked he a few questions about the Lyme test, and she got really defensive about the questions I was asking her, she hung up the phone on me.
I then contacted the manufacture that supplies NHS with the Lyme Test, and they told me that I should have not been on treatment at the time of the test, and that the test has a lot of false negatives as well as a lot of false positives, and that Lyme Disease is also diagnosed by simptoms.
I brought this information to my GP and still he fused to accept I had Lyme Disease. (because of the NHS test). But the NHS result did not stop me from continuing my treatment with my Lyme Specialist, as I was finally feeling better.
My specialist also requested I have a Neurophysiological Assessment of Autonomic Function test, to see if I have any nerve damage.
Again, my Lyme Specialist wrote my GP to see if this test could be done on NHS if the PCT approves it, however, the PCT did not approve it. I had the test done anyway. Thankfully, my private insurance paid for it. I had the test done on 01/05/09 at Barts of London by a well respected Specialist Autonomic Neurophysiologist.
My results showed that I have nerve damage caused by the Lyme Disease (there is no treatment for this), chronic respiratory acidosis, supine hypotension, abnormal spontaneous brainstem activation, excess carbon dioxide do to the toxins of the lyme.
The specialist advised me to have supervised breathing exercises (Butyeko) to try and remove the excess carbon dioxide.
I wrote my GP asking to refer me to a Butyeko specialist and he refuses to write the referral, he told me that my Lyme specialist or my Neurophysiologist should refer me some place in the private sector. (even though I have given my GP all the test results)
My Lyme Specialist did some more blood testing to see how my immune system is holding up. The good news is that my immune system is fine. (this blood test was called CD57, and my blood was sent to Germany, again I had to pay for this test to be done)
How is it possible that these other countries – the U.S. and Germany have better and more accurate tests than the U.K.?
How come the medical community is in such denial here?
I keep asking myself these questions.
If I had the first blood test done over 6 years ago, I might have had to go through a few series of antibiotics.
What, would perhaps cost £100-£200.
Now, I can’t even begin to think of the thousands and thousands of pounds spent with continual mis-diagnoses.
My youngest child, Jack, only really knows me with Lyme. I find this so sad. My daughter remembers me without it. She wants that mum back. So do I. So does my husband.
But, I am lucky, I have a loving family who has stood behind me and by my side as I have had to navigate the mess of our medical community. I wish this on no one. Truly.
I am feeling loads better since treatment, I know I still have a way to go to be 100% but at least I have my Lyme Specialist, my hero.
I had no help from my GP/NHS, only road blocks.
Only continued mess-ups.
I always knew this was not something in my head The doctors seem to be so unbelievably unsympathetic or uneducated about the subject.
I would still be suffering and searching for a diagnosis and a cure – probably having more unnecessary surgeries, taking more unnecessary drugs and most importantly, losing a quality of life I would never be able to get back.
Even though I was initially denied the medical tests that could have diagnosed Lyme Disease early and possibly cured it with a simple course of antibiotics, many years ago.
Now, if only doctors would begin to educate themselves, people would be able to get treated and cured a lot faster!
Lyme Disease is more common than doctors are willing to admit, for some reason.
I took my story/case to NHS complaints and lost.
Then I took it to the Ombudsman and lost...
I am still paying for my treatment.
The above was posted by : Ellie Marshall
Post date: Fri Oct 29, 2010 on Patient UK here
Sadly Ellie's experience is like so many more patients left to wallow with chronic ill health by our Health Authorities who, deny how complex this illness can be without even bothering to look at the huge body of research that shows what a complex relapsing illness Borrelia can be and so our doctors refuse treatment that helps so many of us.
Thursday, 11 November 2010
In meningovascular neurosyphilis and neuroborreliosis the leptomeninges and leptomeningeal arteries are involved leading to Heubner's arteritis and arterial thrombosis with secondary cerebral infarct (indirect parenchymal involvement). When Treponema or Borrelia spirochetes invade the nervous tissue (direct parenchymal involvement) there is a meningo-encephalitis or encephalitis. With respect to the direct parenchymal involvement, which corresponds to a meningoencephalitis, two different forms are distinguished. In the infiltrative form there is a severe lymphoplasmacytic infiltration and in the atrophic form, a poor or absent lymphoplasmacytic infiltration, but severe microgliosis, neuronal loss and cortical atrophy are present. The pathology of both, the infiltrative and atrophic forms were clinically and pathologically documented in both neurosyphilis and Lyme neuroborreliosis.
The cases with chronic or late Lyme neuroborreliosis, illustrated in the chapter, were published in per reviewed, internationally recognized medical journals. Some of them more than 15 years ago. Chronic or late Lyme neuroborreliosis was confirmed by clinical, pathological and serological examinations and the spirochetes, their antigens or their genes were detected in the tertiary lesions of the brain. Improvement of late or chronic neurosyphilis and neuroborreliosis following antibiotic treatment was repeatedly reported both in syphilis and Lyme disease, however the treatment of late or chronic cases are more difficult. Syphilis was virtually eradicated by the use of Penicillin, indicating that we can also eradicate Lyme disease.
Newer approaches to the treatment of Lyme disease should take into account the frequent co-infection with other pathogens and the need for a more prolonged combination therapy, as it is the case in the treatment of tuberculosis. Even in the doubt of tuberculosis the treatment of the patients with "tritherapy" is necessary for 6 months. It should be an example for the future treatment of Lyme disease. Such treatment, in analogy to tuberculosis and syphilis will substantially prevent extensive healthcare costs in the future.'
The above was posted on Judith Miklossy's website here
I have long since been a fan of the outstanding work Judith Miklossy has done in the field of Lyme Disease but also in Alzheimer's and it was a privilege to meet her in 2009 at the Lyme Disease Action conference.
Those of us unfortunate enough to get Lyme Disease who are lucky enough to get diagnosed and find a good knowledgeable Lyme Doctor who is able to tailor treatments to suite us are testament to Miklossy's recommendation about treatments.
Sadly there are many thousands more who go undiagnosed and untreated because not enough attention is being paid to this formidable disease.
I was browsing through an earlier post I did on the UK figures for Lyme Disease 2009 here
1467 in the UK
but according to Dr Ho Yen HPA Scotland ten times the figure of serologically positive tested cases is more likely.
14670 likely Lyme Disease cases in the UK in 2009
As many of us have been sick several years even on the conservative side say 5 years mean that is still an incredibly high number of 73000 people here in the UK many of whom will be unable to work full time due to their illness.
Just imagine how much our Government could save if only there was more awareness and early adequate treatment as well as appropriate treatment for late stages of Lyme Disease.
Wednesday, 10 November 2010
It is interesting to read their recently updated website here
Lyme disease is a multisystem disease caused by the spirochete Borrelia burgdorferi (1). The disease has been documented in Europe since early this century. It was documented in the United States during an epidemic in 1975 among children in Old Lyme Connecticut who demonstrated arthritic symptoms. Steere, et al. recognized the disease as a unique clinical entity (2,3). The symptoms of Lyme disease have been mistaken with many diseases including: juvenile rheumatoid arthritis, lupus erythematosis, multiple sclerosis, Bell’s palsy, rheumatic fever, Reiter's Syndrome, myocarditis and viral meningitis (4).
The spirochete is transmitted by ticks of the genus Ixodes from animal reservoirs such as deer, mice, dogs, horses and birds. The ticks are commonly found on vegetation in endemic regions especially in wooded areas common to the animal reservoir. The incidence of human infection coincides with the tick season from May through September (3,5).
Although the symptoms of Lyme Disease are varied and sometimes unclear, three distinct phases of the disease are recognized. Early manifestations include a single or multiple rash called erythema migrans (EM), a meningitis stage during the next weeks to months is often seen. Late manifestations are recognized to include arthritis or neurologic signs and symptoms. In asymptomatic or subclinical cases, symptoms of infection may not be evident until the later stages of disease (5).
Isolation of B. burgdorferi in culture is definitive evidence of active infection, but is not practical. Detection of specific antibodies is practical but an indirect marker of exposure. Patients produce IgM antibodies within a few weeks of the appearance of EM. Although only IgM antibodies may be detectable during the first month, IgG antibodies increase in most patients after approximately one month. Detectable levels of both IgG and IgM may persist for years (5,6).
B. burgdorferi strains exhibit considerable antigenic variation. Patients often develop early antibodies to the flagellar antigen which can be cross reactive. Patients in the early stage of disease and a portion of patients with late manifestations may not have detectable antibodies. Early antimicrobial treatment, after appearance of EM may lead to diminished antibody concentrations. Serologic tests have been shown to have low sensitivity and specificity and, therefore, cannot be relied upon for establishing a diagnosis of Lyme disease (6,7,8).
The Second National Conference on Serological Diagnosis of Lyme disease (1994) recommended the use of a two-tier test system for Lyme serology in which positive and equivocal samples from a sensitive first-tier test must be further tested by a more specific method such as Western blot (second tier). Positive results in the second tier test provide supportive evidence of exposure to B. burgdorferi which could support a clinical diagnosis of Lyme disease but should not be used as a criterion for diagnosis (9).
I don't think this could be put much clearer - negative tests can not be used to rule out the patient having Lyme Disease.
Why then are there so many doctors and consultants still telling patients here in the UK you don't have Lyme Disease your test result was negative?
Well I think the answer is that they are told this incorrect information from the 'expert' or certainly that was the case for me when I consulted a Rheumatologist who was taking an interest in Lyme Disease, he quoted this expert.
Thankfully for me I had a GP who had seen my amazing recovery on antibiotics, from being severely incapacitated with arthritis and muscle weakness and so continued to treat me on long term antibiotics despite the advice issued by our Health Protection Agency 'expert' who said she should stop giving me antibiotics. I continued to recover and can enjoy a normal life once more.
We need more doctors and consultants to be allowed to think for themselves and not be dictated to by a narrow definition which has insufficient basis to be used to restrict diagnosis and treatment of this emerging complex illness.
Whilst the science continues to emerge over this complex illness it is important to do our own research so that we can discuss with our doctors the best treatments for us, bearing in mind our doctors are often too busy to spend the time needed to read the abundant scientific research that shows that for some of us a short course of antibiotics is just not adequate.