Brian Fallon, M.D., M.P.H.
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
Persistent infection
reinfection from a further tick bite
re activation of latent dormant infection
Physiologically active but post infectious spirochetes
Widely distributed effects post infectious phenomena
hypothyroidism
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...
Wednesday, 17 November 2010
Tuesday, 16 November 2010
25 YEARS EXPERIENCE WITH LYME BORRELIOSIS
25 YEARS EXPERIENCE WITH LYME BORRELIOSISDr. Bela P. Bozsik is a hungarian physician with a unique experience in diagnostics and treatment of Lyme borreliosis. After the discovery of the Borrelia spirochete early in the eighties, Dr. Bozsik was soon engaged in work in the field. With his background from laboratory medicine, he had good insight in the development of test methods, and he soon understood that both diagnostics and treatment would face greater challenges than what was initially believed. During a recent stay in Budapest, we had the opportunity to meet Dr. Bozsik.
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
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
The above was posted on Lyme.no here
Sunday, 14 November 2010
LEFT TO WALLOW WITH CHRONIC ILLNESS BY NHS
What we need to go through just to get treatment
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 excuses.
Only continued mess-ups.
Only denial.
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.
Ellie
Hexham
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.
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 excuses.
Only continued mess-ups.
Only denial.
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.
Ellie
Hexham
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
HOW TO PREVENT HEALTH CARE COSTS
'Dementia and stroke as a consequence of Treponema and Borrelia infections also occur in the tertiary or late stages of these spirochetal diseases.
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.
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
CLINICAL DIAGNOSIS - SAY MAKERS OF LYME DISEASE TEST KITS
Trinity Biotech make the test kits for Lyme Disease used here in the UK.
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.
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.
Saturday, 30 October 2010
CHRONIC FATIGUE, ARTHRALGIAS, MYALGIAS, DYSESTHESIA, DEPRESSION
This recent research article is a start in the right direction looking at Chronic Lyme Disease, so far most research concentrates on the early acute form only.
The recent Institute of Medicine workshop highlighted that more studies need to be done in this later chronic state of illness with or without positive serology.
Abstract can be found on Pub med here
The diagnostic spectrum in patients with suspected chronic Lyme neuroborreliosis - the experience from one year of a university hospital's Lyme neuroborreliosis outpatients clinic.
Most common symptoms in all categories were arthralgia, myalgia, dysaesthesia, depressive mood and chronic fatigue. Conclusion: Patients with persistent symptoms with elevated serum antibodies against BB but without signs of cerebrospinal fluid inflammation require further diagnostic examinations to exclude ongoing infection and to avoid co-infections and other treatable conditions (e.g. autoimmune diseases). One patient with acute LNB, who was treated with ceftriaxone for 3 weeks suffered from LNB with new headaches and persistent symptoms 6 months later. These data should encourage further studies with new experimental parameters.
details also found on Prohealth here
I found the above interesting because it highlights that Borrelia infection may not be ruled out by lack of Cerebrospinal fluid inflamation, something that many Neurologists tend to do with people with Neurological illness or Multiple Sclerosis.
Also the study talks about 122 patients in one year with suspected Chronic Lyme Neuroborreliosis that in itself is interesting because 114 of these people had tested positive for Lyme Disease and all had received antibiotic treatment.
To have such a number suffering with Arthralgias, myalgias, Dysesthesia, Depression and Chronic Fatigue after the standard treatment has to raise some serious questions beyond what this study was aiming at.
Because current guidelines adopted from the IDSA guidelines suggest that these remaining symptoms are rare, all in your head or the aches and pains of daily life it would seem they are not so rare after all.
One has to wonder with the poor state of reliable testing for Lyme Disease how many more people with the above symptoms could infact be suffering from an undiagnosed case of Lyme Disease and may benefit from antibiotic treatment following such as the ILADS guidelines .
The recent Institute of Medicine workshop highlighted that more studies need to be done in this later chronic state of illness with or without positive serology.
Abstract can be found on Pub med here
The diagnostic spectrum in patients with suspected chronic Lyme neuroborreliosis - the experience from one year of a university hospital's Lyme neuroborreliosis outpatients clinic.
Most common symptoms in all categories were arthralgia, myalgia, dysaesthesia, depressive mood and chronic fatigue. Conclusion: Patients with persistent symptoms with elevated serum antibodies against BB but without signs of cerebrospinal fluid inflammation require further diagnostic examinations to exclude ongoing infection and to avoid co-infections and other treatable conditions (e.g. autoimmune diseases). One patient with acute LNB, who was treated with ceftriaxone for 3 weeks suffered from LNB with new headaches and persistent symptoms 6 months later. These data should encourage further studies with new experimental parameters.
details also found on Prohealth here
I found the above interesting because it highlights that Borrelia infection may not be ruled out by lack of Cerebrospinal fluid inflamation, something that many Neurologists tend to do with people with Neurological illness or Multiple Sclerosis.
Also the study talks about 122 patients in one year with suspected Chronic Lyme Neuroborreliosis that in itself is interesting because 114 of these people had tested positive for Lyme Disease and all had received antibiotic treatment.
To have such a number suffering with Arthralgias, myalgias, Dysesthesia, Depression and Chronic Fatigue after the standard treatment has to raise some serious questions beyond what this study was aiming at.
Because current guidelines adopted from the IDSA guidelines suggest that these remaining symptoms are rare, all in your head or the aches and pains of daily life it would seem they are not so rare after all.
One has to wonder with the poor state of reliable testing for Lyme Disease how many more people with the above symptoms could infact be suffering from an undiagnosed case of Lyme Disease and may benefit from antibiotic treatment following such as the ILADS guidelines .
Friday, 29 October 2010
LYME AND XMRV AT ILADS CONFERENCE
Better Health Guy reports back from ILADS conference here
I was only able to watch a small part through the live Webcast so it was great to read Scott Forsgren's summary.
The slides from the event are available for purchase here for a very reasonable $40. The DVDs (Friday's sessions) and CDs of the presentations can be obtained from ZenWorks Productions.
Below are just a tiny selection that caught my eye from Scott's excellent blog post.
Dr. Richard Horowitz proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome
Dr. Joe Burrascano shared: New pathogens will likely continue to be discovered such as XMRV / HGRV
and
In chronic Lyme patients, 100% may be XMRV / HGRV positive
Eva Sapi, PhD talked about the many exciting projects that her team is doing:
They are looking for XMRV in ticks to see if the retrovirus may be transmitted by tick exposure
They did some excellent research showing Samento + Banderol + Serrapeptase (all from NutraMedix) had very significant biofilm eliminating effects
Dr. Joe Brewer spoke on the topic of XMRV:
In one autism study, all mothers tested were XMRV positive and many of them expressed symptoms of Chronic Fatigue Syndrome or Fibromyalgia
In a small sample of MS (4), Parkinson's (1), and ALS (1) patients, 100% of those tested were positive for XMRV
In chronic Lyme disease, over 90% of those tested were positive for XMRV
During Q&A, Dr. Fishman acknowledged the politics involved in Lyme disease. He suggested that XMRV may be the pathway that we should pursue in order to benefit ourselves
But much much more at Better Health Guy here
I was only able to watch a small part through the live Webcast so it was great to read Scott Forsgren's summary.
The slides from the event are available for purchase here for a very reasonable $40. The DVDs (Friday's sessions) and CDs of the presentations can be obtained from ZenWorks Productions.
Below are just a tiny selection that caught my eye from Scott's excellent blog post.
Dr. Richard Horowitz proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome
Dr. Joe Burrascano shared: New pathogens will likely continue to be discovered such as XMRV / HGRV
and
In chronic Lyme patients, 100% may be XMRV / HGRV positive
Eva Sapi, PhD talked about the many exciting projects that her team is doing:
They are looking for XMRV in ticks to see if the retrovirus may be transmitted by tick exposure
They did some excellent research showing Samento + Banderol + Serrapeptase (all from NutraMedix) had very significant biofilm eliminating effects
Dr. Joe Brewer spoke on the topic of XMRV:
In one autism study, all mothers tested were XMRV positive and many of them expressed symptoms of Chronic Fatigue Syndrome or Fibromyalgia
In a small sample of MS (4), Parkinson's (1), and ALS (1) patients, 100% of those tested were positive for XMRV
In chronic Lyme disease, over 90% of those tested were positive for XMRV
During Q&A, Dr. Fishman acknowledged the politics involved in Lyme disease. He suggested that XMRV may be the pathway that we should pursue in order to benefit ourselves
But much much more at Better Health Guy here
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