It is good to see Lyme Disease Action spreading awareness of this disease through Facebook.
Below is a copy of their first post on Facebook but there are many more to read at http://www.facebook.com/home.php?#!/pages/Lyme-Disease-Action/122058224483868
Lyme Disease Action You thought the IDSA guidelines were unequivocally upheld? What no-one is telling you: LDA has issued a press release highlighting what the IDSA Review Panel actually said and how they recommended changes to the guidelines.
Lyme disease review panel : the truth is in the detail
www.lymediseaseaction.org.uk
The Lyme disease review panel of the Infectious Diseases Society of America (IDSA) has released its long-awaited final report following an enforced review of the controversial 2006 Lyme disease guidelines, which are also used in the UK.
If you have like me Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica diagnosis then do follow the above links and have a good read because who knows doctors could be missing other cases of undiagnosed Lyme Disease as they did with me for 4 years. Now diagnosed with Lyme disease and after many months of long term antibiotics I am nearly 100% with no pain, no disability, no Arthritis or Muscle Weakness and able to enjoy my garden again.
Lyme Disease can present as Neurological symptoms and be mis diagnosed as MS, MN, Parkinson's, Autism, ADHD, OCD.
It can also cause problems with the heart and the brain and any organ or system in the body depending where the infection goes.
Showing posts with label MN. Show all posts
Showing posts with label MN. Show all posts
Sunday, 6 June 2010
Tuesday, 11 May 2010
MS THE ROSETTA STONE OF LYME DISEASE?
On a forum I follow there was a thread talking about symptoms and management of certain symptoms, someone suggested that infact a google of MS and the symptom may give some understanding, a bit like the Rosetta Stone for Lyme Disease.
So many symptoms of Multiple Sclerosis are the same as Lyme Disease and patients with Lyme Disease are diagnosed with Multiple Sclerosis, but actually get better on long term antibiotics for Lyme when properly diagnosed.
Of course I did a try with Google and it was interesting except the second one referred me back to the possibility of Lyme which made me chuckle that at last we are becoming more aware of Lyme Disease, on the Internet at least.
I asked permission to post a further post in that thread because I think it so clearly shows the problems we have with our doctors investigating our illness.
The same can be said for so many illnesses but especially Fibromyalgia, ME/CFS, Arthritis and Neurological illnesses such as MS but also Parkinson's and ALS or Motor Neurons.
Actually, I think that's one of the problems. So many conditions include what we consider "Lyme symptoms" (e.g. crushing fatigue, sleep disturbance) I think docs find it overwhelming. Especially once they've ruled out the ones they're used to. Eg thyroid issues, anaemia, raging viral infection.
I've lost count of the number of times consultants have come to the conclusion that I must have HIV. (I don't. Tested twice, at their insistence.)
Funny isn't it... at one point they think it's likely that you have a life-threatening, treatable but currently incurable disease. Then when they find out you don't have it, they decide whatever it is can't be that serious, and just label it CFS. That's quite a leap.
The very first doc I saw thought I probably had a lymphoma. I've kind of gone backwards in how seriously ill they consider me, because if they can't diagnose it, they don't think you can be ill with *anything*.
As my symptoms got progressively worse, they decided I was getting better!
Doesn't this sum up our experiences so well in just a few words.
However my symptoms were not so much Neurological apart from a few Peripheral Neuropathies and the scary Swallowing problems Dysphagia, they were mainly Arthritis and Muscle weakness. Other patients find the infection affects different areas causing all sorts of symptoms including Psychiatric, ADHD, Autism, OCD as well as Alzheimers. For all these of course a different Rosetta Stone would be needed but better still perhaps we should just stick with Burrascano Guidelines found at www.ilads.og
Perhaps ILADS will be the Rosetta Stone for so many of our health problems.
So many symptoms of Multiple Sclerosis are the same as Lyme Disease and patients with Lyme Disease are diagnosed with Multiple Sclerosis, but actually get better on long term antibiotics for Lyme when properly diagnosed.
Of course I did a try with Google and it was interesting except the second one referred me back to the possibility of Lyme which made me chuckle that at last we are becoming more aware of Lyme Disease, on the Internet at least.
I asked permission to post a further post in that thread because I think it so clearly shows the problems we have with our doctors investigating our illness.
The same can be said for so many illnesses but especially Fibromyalgia, ME/CFS, Arthritis and Neurological illnesses such as MS but also Parkinson's and ALS or Motor Neurons.
Actually, I think that's one of the problems. So many conditions include what we consider "Lyme symptoms" (e.g. crushing fatigue, sleep disturbance) I think docs find it overwhelming. Especially once they've ruled out the ones they're used to. Eg thyroid issues, anaemia, raging viral infection.
I've lost count of the number of times consultants have come to the conclusion that I must have HIV. (I don't. Tested twice, at their insistence.)
Funny isn't it... at one point they think it's likely that you have a life-threatening, treatable but currently incurable disease. Then when they find out you don't have it, they decide whatever it is can't be that serious, and just label it CFS. That's quite a leap.
The very first doc I saw thought I probably had a lymphoma. I've kind of gone backwards in how seriously ill they consider me, because if they can't diagnose it, they don't think you can be ill with *anything*.
As my symptoms got progressively worse, they decided I was getting better!
Doesn't this sum up our experiences so well in just a few words.
However my symptoms were not so much Neurological apart from a few Peripheral Neuropathies and the scary Swallowing problems Dysphagia, they were mainly Arthritis and Muscle weakness. Other patients find the infection affects different areas causing all sorts of symptoms including Psychiatric, ADHD, Autism, OCD as well as Alzheimers. For all these of course a different Rosetta Stone would be needed but better still perhaps we should just stick with Burrascano Guidelines found at www.ilads.og
Perhaps ILADS will be the Rosetta Stone for so many of our health problems.
Sunday, 21 February 2010
Videos worth watching if you have Neurological, Phsychiatric or Rheumatological symptoms
If you have, like me been diagnosed with Fibromyalgia do have a look at the following videos through the links I have posted. With all the controversy over many of our illnesses and especially Lyme disease we need to be well informed.
The same can apply to patients with a ME/CFS diagnosis, especially as research shows that many of them do indeed have Lyme Disease complicating their illness.
Poly Myagia Rheumatica was another of my mis diagnosis and as my post of yesterday explains can indeed be a mis diagnosis of Lyme Disease.
Lyme Disease has been found in patients with most Neurological illnesses ALS, MN, MS, That is not to say the reverse that everyone has Lyme Disease just how many are properly investigated for it in view of the problems over testing.
Lyme Disease can be found in Rheumatolgical illnesses it can be the cause of Arthritis in the young and the old. It was the high numbers of Juvenile Rheumatoid Arthritis in a group of children in Old Lyme Connecticut that led Polly Murray to get doctors to investigate the strange illness which in turn led to the discovery of what we now know to be Lyme Disease.
Lyme Disease can also cause Psychiatric symptoms from mild depression to major psychiatric disorders. Dr Bransfield the current President of ILADS has presented much research in this field. His research on Lyme Induced Autism is ground breaking. See Lyme induced Autism Foundation
Thanks to Marlyn Kerr of Lyme Advocate blog for posting the videos from the Boston Chronicle Feb 14, 2010
http://www.thebostonchannel.com/video/19245192/
http://www.thebostonchannel.com/video/19245218/
http://www.thebostonchannel.com/video/19245302/
The videos include old a new footage a lot of which I have not seen before.
The same can apply to patients with a ME/CFS diagnosis, especially as research shows that many of them do indeed have Lyme Disease complicating their illness.
Poly Myagia Rheumatica was another of my mis diagnosis and as my post of yesterday explains can indeed be a mis diagnosis of Lyme Disease.
Lyme Disease has been found in patients with most Neurological illnesses ALS, MN, MS, That is not to say the reverse that everyone has Lyme Disease just how many are properly investigated for it in view of the problems over testing.
Lyme Disease can be found in Rheumatolgical illnesses it can be the cause of Arthritis in the young and the old. It was the high numbers of Juvenile Rheumatoid Arthritis in a group of children in Old Lyme Connecticut that led Polly Murray to get doctors to investigate the strange illness which in turn led to the discovery of what we now know to be Lyme Disease.
Lyme Disease can also cause Psychiatric symptoms from mild depression to major psychiatric disorders. Dr Bransfield the current President of ILADS has presented much research in this field. His research on Lyme Induced Autism is ground breaking. See Lyme induced Autism Foundation
Thanks to Marlyn Kerr of Lyme Advocate blog for posting the videos from the Boston Chronicle Feb 14, 2010
http://www.thebostonchannel.com/video/19245192/
http://www.thebostonchannel.com/video/19245218/
http://www.thebostonchannel.com/video/19245302/
The videos include old a new footage a lot of which I have not seen before.
Thursday, 18 February 2010
MAD,BAD WORLD OF ME/CFS AND LYME DISEASE
Mad bad World of Lyme Disease was an expression I heard recently, it was in connection with Alex Wade's diagnosis of Lyme Disease, details on Alex Wade's blog Surf Nation.
Alex has had 4 positive NHS blood tests for Lyme Disease over recent months, 7 months of EM rash photos posted on his website and 2 months Doxycycline on NHS, way beyond the standard two weeks recommended.
Alex's rash is still visible, according to my understanding the EM rash is diagnostic of Lyme Disease by CDC. Even by IDSA standards, with Alex on going Neurological symptoms this should mean 1 month of IV antibiotics, which as the HPA guidelines follow these guidelines should be what Alex is given.
Once again Alex is given the run around, now the HPA are suggesting that perhaps all his 4 positive tests done by them in their labs, which are considered the gold standard are all false positives. (no other labs test results are accepted by HPA in the UK for Lyme Disease other than HPA ones).
As Alex grapples to understand what is going on it is painful for those knowledgeable about Lyme Disease to stand back and watch without trying to help. Alex's recent post says he is getting about 150 e mails a day mainly about Lyme Disease. No one who has struggled with Lyme Disease would want another person to struggle untreated through what we have struggled through.
I was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica and then eventually my GP suspected Lyme Disease which was later confirmed by a clinical diagnosis. On long term antibiotics I have my health and life back.
I joined a chat line Euorlyme and regularly 'converse' with other people who like me were diagnosed with ME/CFS but then found that it was in fact Lyme Disease.
I also follow other ME/CFS blogs but time and again I see that patients have so many symptoms that could be Lyme Disease, but are either refused testing or get negative test results and so their doctors and they dismiss the possibility of Lyme Disease, without properly getting checked by Lyme Literate Medical Doctors (LLMD). It is such a waste of lives to go undiagnosed properly and not treated for a condition that can be treated and symptoms relieved. Many top Lyme doctors and ME/CFS doctors recognise the overlap with these illnesses, something I have posted about before.
For many of us who have beaten Lyme or helped our loves ones through this illness it is heartbreaking watching others fall through the cracks,(more like chasm) knowing all we can do is raise awareness and advise about the considerable research available that supports ILADS treatment. Sometimes it can take months before people listen and do indeed follow up, by seeking a diagnosis from doctors specialising in Lyme disease. Those wasted months can be crucial in fighting this illness, which was described at the IDSA review hearing last July as a formidable bug.
Don't be fooled by Lyme Disease, extract from Scratching the Surface 'The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.' Who ever heard of treating either of these illnesses with two weeks antibiotics?
Judith Miklossy research says 'Even in the doubt of tuberculosis it is obligatory to treat patients with "tritherapy" 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.'
One day those who have a stranglehold on this illness will be exposed and medicine will at last move forward saving thousands of lives from carnage, meanwhile be your own best advocate and get informed.
For more information visit Lyme Disease Action charity website
Alex has had 4 positive NHS blood tests for Lyme Disease over recent months, 7 months of EM rash photos posted on his website and 2 months Doxycycline on NHS, way beyond the standard two weeks recommended.
Alex's rash is still visible, according to my understanding the EM rash is diagnostic of Lyme Disease by CDC. Even by IDSA standards, with Alex on going Neurological symptoms this should mean 1 month of IV antibiotics, which as the HPA guidelines follow these guidelines should be what Alex is given.
Once again Alex is given the run around, now the HPA are suggesting that perhaps all his 4 positive tests done by them in their labs, which are considered the gold standard are all false positives. (no other labs test results are accepted by HPA in the UK for Lyme Disease other than HPA ones).
As Alex grapples to understand what is going on it is painful for those knowledgeable about Lyme Disease to stand back and watch without trying to help. Alex's recent post says he is getting about 150 e mails a day mainly about Lyme Disease. No one who has struggled with Lyme Disease would want another person to struggle untreated through what we have struggled through.
I was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica and then eventually my GP suspected Lyme Disease which was later confirmed by a clinical diagnosis. On long term antibiotics I have my health and life back.
I joined a chat line Euorlyme and regularly 'converse' with other people who like me were diagnosed with ME/CFS but then found that it was in fact Lyme Disease.
I also follow other ME/CFS blogs but time and again I see that patients have so many symptoms that could be Lyme Disease, but are either refused testing or get negative test results and so their doctors and they dismiss the possibility of Lyme Disease, without properly getting checked by Lyme Literate Medical Doctors (LLMD). It is such a waste of lives to go undiagnosed properly and not treated for a condition that can be treated and symptoms relieved. Many top Lyme doctors and ME/CFS doctors recognise the overlap with these illnesses, something I have posted about before.
For many of us who have beaten Lyme or helped our loves ones through this illness it is heartbreaking watching others fall through the cracks,(more like chasm) knowing all we can do is raise awareness and advise about the considerable research available that supports ILADS treatment. Sometimes it can take months before people listen and do indeed follow up, by seeking a diagnosis from doctors specialising in Lyme disease. Those wasted months can be crucial in fighting this illness, which was described at the IDSA review hearing last July as a formidable bug.
Don't be fooled by Lyme Disease, extract from Scratching the Surface 'The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.' Who ever heard of treating either of these illnesses with two weeks antibiotics?
Judith Miklossy research says 'Even in the doubt of tuberculosis it is obligatory to treat patients with "tritherapy" 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.'
One day those who have a stranglehold on this illness will be exposed and medicine will at last move forward saving thousands of lives from carnage, meanwhile be your own best advocate and get informed.
For more information visit Lyme Disease Action charity website
Tuesday, 16 February 2010
HEALTHY EATING
During my extensive reading about Lyme Disease and ME/CFS I have often heard mention of Dr Sarah Myhill and have occasionally looked at her site but only briefly.
I am well aware that attention to diet is important particularly when suffering with Lyme Disease and or ME/CFS and have read Dr J J Burrascano Guidelines many times although I have not been good at following his advice about diet. My LLMD tries very hard to encourage me to follow a better diet particularly low on carbohydrate and sugar two of my worst weaknesses. My third weakness dairy may well be the reason for my many years of sinus problems which are currently improving since reducing my dairy intake.
I came across a link into Dr Myhill’s website today thanks to Hedge http://www.tiredofme.com/
The first thing I read was about allergies and colicky babies, how I wish I had read this 30 years ago when I desperately tried to calm my colicky daughter. Food for thought as she spent her childhood with sinus problems which caused sleeping problems up to the age of 8 and now as an adult constant allergies.
http://www.drmyhill.co.uk/
There is much wisdom, we can all benefit from looking at Sarah Myhill’s website.
Below are extracts from Burrascano Guidelines http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
found through www.ilads.org
‘If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention
must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise
programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food
sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no
immunosuppressants, even local doses of steroids (intra-articular injections, for example)’.
‘INTESTINAL TRACT: An overgrowth of yeast here will ferment dietary sugars and starches, forming acids, gas,
alcohols and a variety of organic chemicals. Symptoms include gas, bloat, heartburn and/or pain in the
stomach area, and because of the organic chemicals, there can be headaches, dizziness, lightheadedness,
wooziness and post-meal fatigue. To clear intestinal yeast, first the tongue and mouth must be cleansed so
yeast does not reenter the system with every swallow. Next, since yeast germs feed on sugars and starches,
follow the low carbohydrate diet outlined below. Finally, to replenish the normal, beneficial microbes, eat PLAIN
yogurt daily, drink Kefir, 4 ounces daily, and/or take acidophilus, 2 capsules three times daily after meals.
YEAST CONTROL DIET- restricted carbohydrate regimen
UNRESTRICTED FOODS
All protein foods, such as meat, fish, fowl, cheese, eggs, dairy, tofu
RESTRICTED FOODS
FRUITS
Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of
fiber, this may make up for the sugars to some degree. Thus:
· Fruits are only allowed at the end of a meal, and never on an empty stomach
· Only high fiber fruits are allowed
· Only very small amounts!
EXAMPLES:
ALLOWED IN GENEROUS AMOUNTS
Grapefruit, lemons, limes, tomatoes, avocado
ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially
makes up for the carbohydrates)
Pears, apples, strawberries, cantaloupe, etc.
NOT ALLOWED (These soft fruits do not have enough fiber)
Oranges, watermelons, bananas, grapes, etc.
No fruit juices either!
VEGETABLES
Green vegetables and salads are O.K. Avoid or limit starchy vegetables (potato, rice, beans, etc.) and avoid
pasta.
STARCHES
None!! If it is made from flour- any kind of flour- it is not allowed. (No breads, cereals, cake, etc.)
SWEETENERS
NOT ALLOWED
No sugars at all, and no fructose or corn syrup
ALLOWED (if tolerated)
Stevia (safest), honey, and Splenda,
Aspartame (NutraSweet, Equal) may not be tolerated by some patients
Saccharin products are not recommended
DRINKS
ALLOWED
Water, seltzer, caffeine-free diet sodas, coffee and tea without sugar or caffeine, vegetable juices
NOT ALLOWED
Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups
No Alcohol at all
OTHERS
Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small
portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken,
must be totally carbohydrate free!’
Now I have recovered so well from my ME/CFS which turned out to be Lyme Disease I should really start to take my diet in hand and follow the advice of these two excellent doctors.
Below is a link into Rachel’s blog Raising awareness for ME/CFS in May 2010
http://meaware.wordpress.com/2010/02/15/blogging-for-mecfs-awareness-2010/
I am well aware that attention to diet is important particularly when suffering with Lyme Disease and or ME/CFS and have read Dr J J Burrascano Guidelines many times although I have not been good at following his advice about diet. My LLMD tries very hard to encourage me to follow a better diet particularly low on carbohydrate and sugar two of my worst weaknesses. My third weakness dairy may well be the reason for my many years of sinus problems which are currently improving since reducing my dairy intake.
I came across a link into Dr Myhill’s website today thanks to Hedge http://www.tiredofme.com/
The first thing I read was about allergies and colicky babies, how I wish I had read this 30 years ago when I desperately tried to calm my colicky daughter. Food for thought as she spent her childhood with sinus problems which caused sleeping problems up to the age of 8 and now as an adult constant allergies.
http://www.drmyhill.co.uk/
There is much wisdom, we can all benefit from looking at Sarah Myhill’s website.
Below are extracts from Burrascano Guidelines http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
found through www.ilads.org
‘If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention
must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise
programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food
sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no
immunosuppressants, even local doses of steroids (intra-articular injections, for example)’.
‘INTESTINAL TRACT: An overgrowth of yeast here will ferment dietary sugars and starches, forming acids, gas,
alcohols and a variety of organic chemicals. Symptoms include gas, bloat, heartburn and/or pain in the
stomach area, and because of the organic chemicals, there can be headaches, dizziness, lightheadedness,
wooziness and post-meal fatigue. To clear intestinal yeast, first the tongue and mouth must be cleansed so
yeast does not reenter the system with every swallow. Next, since yeast germs feed on sugars and starches,
follow the low carbohydrate diet outlined below. Finally, to replenish the normal, beneficial microbes, eat PLAIN
yogurt daily, drink Kefir, 4 ounces daily, and/or take acidophilus, 2 capsules three times daily after meals.
YEAST CONTROL DIET- restricted carbohydrate regimen
UNRESTRICTED FOODS
All protein foods, such as meat, fish, fowl, cheese, eggs, dairy, tofu
RESTRICTED FOODS
FRUITS
Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of
fiber, this may make up for the sugars to some degree. Thus:
· Fruits are only allowed at the end of a meal, and never on an empty stomach
· Only high fiber fruits are allowed
· Only very small amounts!
EXAMPLES:
ALLOWED IN GENEROUS AMOUNTS
Grapefruit, lemons, limes, tomatoes, avocado
ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially
makes up for the carbohydrates)
Pears, apples, strawberries, cantaloupe, etc.
NOT ALLOWED (These soft fruits do not have enough fiber)
Oranges, watermelons, bananas, grapes, etc.
No fruit juices either!
VEGETABLES
Green vegetables and salads are O.K. Avoid or limit starchy vegetables (potato, rice, beans, etc.) and avoid
pasta.
STARCHES
None!! If it is made from flour- any kind of flour- it is not allowed. (No breads, cereals, cake, etc.)
SWEETENERS
NOT ALLOWED
No sugars at all, and no fructose or corn syrup
ALLOWED (if tolerated)
Stevia (safest), honey, and Splenda,
Aspartame (NutraSweet, Equal) may not be tolerated by some patients
Saccharin products are not recommended
DRINKS
ALLOWED
Water, seltzer, caffeine-free diet sodas, coffee and tea without sugar or caffeine, vegetable juices
NOT ALLOWED
Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups
No Alcohol at all
OTHERS
Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small
portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken,
must be totally carbohydrate free!’
Now I have recovered so well from my ME/CFS which turned out to be Lyme Disease I should really start to take my diet in hand and follow the advice of these two excellent doctors.
Below is a link into Rachel’s blog Raising awareness for ME/CFS in May 2010
http://meaware.wordpress.com/2010/02/15/blogging-for-mecfs-awareness-2010/
Sunday, 14 February 2010
BRAIN FOG TO COGNITIVE DYSFUNCTION
From Brain Fog to Cognitive dysfunction and many stages in between, a quick look through Google will show the many possible causes such as chemical sensitivity, allergies, hormonal, infection and many more.
ME/CFS NICE guidelines say - Concentration and memory difficulties (‘brain fog’) are, however, typical.
http://www.nice.org.uk/nicemedia/pdf/CG53FullGuidance.pdf page 176
Arthritis and Fibromyalgia Arthritis Today - Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that can occur with fibromyalgia.
http://www.arthritistoday.org/conditions/fibromyalgia/all-about-fibro/fibro-fog.php
MS According to the Mutiple Sclerosis Resource centre ‘It is reported that 50% of people with MS admit to experiencing cognitive problems to some degree or another, rising to 80% if we include the most severe cases.’
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1272
ALS or Motor Neurons also known as Lou Gehrig’s disease an interesting case study. In 2003 Dr Martz fell ill and some months later was diagnosed with ALS and given 6 months to live. Diagnosed and treated for Lyme Disease he recovered and opened a clinic specialising in patients with ALS. Details of his story can be found on Canadian Lyme Disease Foundation
http://www.canlyme.com/gazette_martz_2006.html
Dr Martz presented at the 2009 ILADS conference and in June 2010 he will be presenting at an ILADS conference in London details to be announced.
www.ilads.org
Autism Charity Lyme Induced Autism ‘The goal of this organization is to provide education, awareness and research into an infectious based cause of autism. Yes..Lyme/borrelia is our PRIME suspect, but we realize that this is multiple infections happening on a disabled immune system and these infections can be triggered by many factors including but not limited to vaccines, chemicals/pesticides, electromagnetic frequency and a whole host of environmental factors. When we consider all options, only then will our kids be able to begin improving.’
http://www.lymeinducedautism.com/
Alzheimer’s Much interesting research has been done by Judith Miklossy Alzheimer's Disease -Emerging role of Infections.
‘The realization that pathogens can produce slowly progressive chronic diseases has resulted in a new concept of infectious diseases.’
‘It has also been known from a century that chronic bacterial infection can cause dementia’
‘Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention as adequate anti-bacterial and anti-viral drugs are available. Treatment of a bacterial infection and associated viral infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial.’
http://www.miklossy.ch/401/index.html
I heard Dr Robert Bransfield President of ILADS present at the Lyme Disease Action conference in 2008 and his comments on brain fog and cognitive dysfunction were particularly revealing and well worth reading whatever illness you happen to have.
http://www.lymediseaseaction.org.uk/conf2008/bransfieldneuro.pdf
http://www.lymediseaseaction.org.uk/conf2008/bransfieldchronic.pdf
I write this to be thought provoking, not to suggesting that everyone with the above illnesses are as a result of infection.
Certainly with the state of the Medical Controversy over diagnosis and treatment of Lyme Disease and it’s many co infections most people are clearly not being properly assessed to see if they are infected. If blood tests for Lyme Disease are taken most doctors are led to believe that they are 100% reliable when research shows that they can miss up to 50% of cases. http://www.ilads.org/lyme_disease/lyme_slides.html
Then there are the other known pathogens and what of those pathogens yet still unknown?
ME/CFS NICE guidelines say - Concentration and memory difficulties (‘brain fog’) are, however, typical.
http://www.nice.org.uk/nicemedia/pdf/CG53FullGuidance.pdf page 176
Arthritis and Fibromyalgia Arthritis Today - Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that can occur with fibromyalgia.
http://www.arthritistoday.org/conditions/fibromyalgia/all-about-fibro/fibro-fog.php
MS According to the Mutiple Sclerosis Resource centre ‘It is reported that 50% of people with MS admit to experiencing cognitive problems to some degree or another, rising to 80% if we include the most severe cases.’
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1272
ALS or Motor Neurons also known as Lou Gehrig’s disease an interesting case study. In 2003 Dr Martz fell ill and some months later was diagnosed with ALS and given 6 months to live. Diagnosed and treated for Lyme Disease he recovered and opened a clinic specialising in patients with ALS. Details of his story can be found on Canadian Lyme Disease Foundation
http://www.canlyme.com/gazette_martz_2006.html
Dr Martz presented at the 2009 ILADS conference and in June 2010 he will be presenting at an ILADS conference in London details to be announced.
www.ilads.org
Autism Charity Lyme Induced Autism ‘The goal of this organization is to provide education, awareness and research into an infectious based cause of autism. Yes..Lyme/borrelia is our PRIME suspect, but we realize that this is multiple infections happening on a disabled immune system and these infections can be triggered by many factors including but not limited to vaccines, chemicals/pesticides, electromagnetic frequency and a whole host of environmental factors. When we consider all options, only then will our kids be able to begin improving.’
http://www.lymeinducedautism.com/
Alzheimer’s Much interesting research has been done by Judith Miklossy Alzheimer's Disease -Emerging role of Infections.
‘The realization that pathogens can produce slowly progressive chronic diseases has resulted in a new concept of infectious diseases.’
‘It has also been known from a century that chronic bacterial infection can cause dementia’
‘Highest priority should be given to this emerging field of research. It may have major implications for public health, treatment, and prevention as adequate anti-bacterial and anti-viral drugs are available. Treatment of a bacterial infection and associated viral infection may result in regression and, if started early, prevention of the disease. The impact on reducing health-care costs would be substantial.’
http://www.miklossy.ch/401/index.html
I heard Dr Robert Bransfield President of ILADS present at the Lyme Disease Action conference in 2008 and his comments on brain fog and cognitive dysfunction were particularly revealing and well worth reading whatever illness you happen to have.
http://www.lymediseaseaction.org.uk/conf2008/bransfieldneuro.pdf
http://www.lymediseaseaction.org.uk/conf2008/bransfieldchronic.pdf
I write this to be thought provoking, not to suggesting that everyone with the above illnesses are as a result of infection.
Certainly with the state of the Medical Controversy over diagnosis and treatment of Lyme Disease and it’s many co infections most people are clearly not being properly assessed to see if they are infected. If blood tests for Lyme Disease are taken most doctors are led to believe that they are 100% reliable when research shows that they can miss up to 50% of cases. http://www.ilads.org/lyme_disease/lyme_slides.html
Then there are the other known pathogens and what of those pathogens yet still unknown?
Thursday, 11 February 2010
LET OUR VOICES BE HEARD.
The Dutch Lyme disease association has submitted a petition of 65,000 names to parliament, enough to make sure the issue gets debated under citizen's initiative legislation.
The above was in the Dutch News.nl
The association estimates up to 500,000 people may have the illness in one form or another.
Following on from my post yesterday I see that Radio Netherlands also announces the news.
Details can also be found on the CALDA news.
I wish the Dutch every success.
Here in the UK there have been E petitions to Government and lobbying details can be found on Lyme Disease Action website however an interesting point made by Oliver Letwin can be read on his website. Oliver Letwin is very supportive of charity Lyme Disease Action but he goes on to say 'It is an interesting and important feature of the scene that, when these medical disputes occur, there is no joy to be had from lobbying ministers – because, no matter how many meetings you hold at Westminster, and no matter how many letters you write, you inevitably just get the answers written for ministers by the Health Protection Agency.'
However by no means let that put you off the lobbying process because for now we still need to be heard.
I read a very interesting post by Lyme MD recently in which he talks about the numbers of patients with Lyme disease who then go on to suffer a variety of symptoms many chronic symptoms and yet these patients are turned away by doctor after doctor sometimes rudely and often refused any treatment.
He raises the very valid question as to why even if those doctors prefer to follow IDSA guidelines rather than ILADS guidelines, do they turn them away, why not at the least treat them with the usual medicines that are standard for reducing the symptoms complained about. Of course Lyme MD says it so much better than I can and so follow the link to his comments here.
My symptoms of Arthritis, Muscle Weakness, Fibromyalgia, ME/CFS and some Neurological symptoms, Neuralga, tingling and muscle twitching, swallowing difficulties being the scarriest, were all resolved on long term antibiotic treatment once my GP suspected Lyme Disease and the evidence of tick bites, Bulls eye rashes, summer flu' and migrating arthralgias were all documented on her computer from the 5 doctors and 3 Rheumatologists I had previously seen. How fortunate I was in having such a thinking doctor who was able to work things out, but then had the first locum doctor I saw with EM rashes figured things out I could have had a simple course of antibiotics and may have avoided 6 1/2 years ill health.
Raising awareness is the key to protect people and yet when my MP asked the Health Secretary about raising awareness the response was that the HPA had updated their website! How does that help so many people who like me didn't know you could get Lyme here in the UK or the consequences of being infected? How does that help doctors who are taught that it is so rare that many never even consider it as a differential diagnosis and some even say you can't get Lyme in the UK? (When clearly HPA records show that Lyme can be caught throughout the UK).
Whether you support IDSA view or ILADS view why are our Health Authorities not helping raise awareness so that we can a. protect ourselves and b. seek medical advice at the time of the bite and/or rash?
What is all this denial really about when both parties agree Lyme Disease can lead to ongoing chronic symptoms avoidable by a simple course of antibiotics in the early weeks of infection?
The above was in the Dutch News.nl
The association estimates up to 500,000 people may have the illness in one form or another.
Following on from my post yesterday I see that Radio Netherlands also announces the news.
Details can also be found on the CALDA news.
I wish the Dutch every success.
Here in the UK there have been E petitions to Government and lobbying details can be found on Lyme Disease Action website however an interesting point made by Oliver Letwin can be read on his website. Oliver Letwin is very supportive of charity Lyme Disease Action but he goes on to say 'It is an interesting and important feature of the scene that, when these medical disputes occur, there is no joy to be had from lobbying ministers – because, no matter how many meetings you hold at Westminster, and no matter how many letters you write, you inevitably just get the answers written for ministers by the Health Protection Agency.'
However by no means let that put you off the lobbying process because for now we still need to be heard.
I read a very interesting post by Lyme MD recently in which he talks about the numbers of patients with Lyme disease who then go on to suffer a variety of symptoms many chronic symptoms and yet these patients are turned away by doctor after doctor sometimes rudely and often refused any treatment.
He raises the very valid question as to why even if those doctors prefer to follow IDSA guidelines rather than ILADS guidelines, do they turn them away, why not at the least treat them with the usual medicines that are standard for reducing the symptoms complained about. Of course Lyme MD says it so much better than I can and so follow the link to his comments here.
My symptoms of Arthritis, Muscle Weakness, Fibromyalgia, ME/CFS and some Neurological symptoms, Neuralga, tingling and muscle twitching, swallowing difficulties being the scarriest, were all resolved on long term antibiotic treatment once my GP suspected Lyme Disease and the evidence of tick bites, Bulls eye rashes, summer flu' and migrating arthralgias were all documented on her computer from the 5 doctors and 3 Rheumatologists I had previously seen. How fortunate I was in having such a thinking doctor who was able to work things out, but then had the first locum doctor I saw with EM rashes figured things out I could have had a simple course of antibiotics and may have avoided 6 1/2 years ill health.
Raising awareness is the key to protect people and yet when my MP asked the Health Secretary about raising awareness the response was that the HPA had updated their website! How does that help so many people who like me didn't know you could get Lyme here in the UK or the consequences of being infected? How does that help doctors who are taught that it is so rare that many never even consider it as a differential diagnosis and some even say you can't get Lyme in the UK? (When clearly HPA records show that Lyme can be caught throughout the UK).
Whether you support IDSA view or ILADS view why are our Health Authorities not helping raise awareness so that we can a. protect ourselves and b. seek medical advice at the time of the bite and/or rash?
What is all this denial really about when both parties agree Lyme Disease can lead to ongoing chronic symptoms avoidable by a simple course of antibiotics in the early weeks of infection?
Tuesday, 9 February 2010
LYME DISEASE SUMMARISED BY A VET
Those with multiple symptoms of Fatigue, Fibromyalgia, ME/CFS, Arthritis, Neurological symptoms would do well to read the following written by a vet I know, it summarises what he has learnt about Lyme Disease very well.
Lyme is also known to cause backache and the link at the end of the article takes you into some excellent research which the Daily Mail ran an article on. Very well worth a read.
Lyme (borrelia) infection is, by conventional wisdom, usually caught from infected ticks, which by the way, are everywhere, as they are carried by birds and all domestic animals and wildlife. Hosts for ticks can be any small animal, like hedgehogs, so allotments often comprise hot-spots for Lyme. Even if you remove the tick before it has time to transmit Lyme, you can still get other serious co-infections from the tick, such as Bartonella (we call it "cat-scratch fever"). Babesia is a malaria-like infection. There’s a list of other infections including Ehrlichia, Tick-Borne Encephalitis and others which may not yet be recognised in the UK but which will become important with Global Warming helping the vectors (insects) to survive.
Lyme Disease can be transmitted by other biting insects like stable-flies, fleas, lice, mites - and can also be transmitted from a mother to her offspring, either via the placenta or through the milk. Or like syphilis, by sexual contact. It appears to be a linked to some autism in children and also Alzheimer's.
The scary thing about Lyme (Borrelia) infection is its effects on the body. It can mimic virtually every other disease. The bacterium itself is the most sophisticated known to man. Being a corkscrew-shape spirochaete it resembles its relatives like Leptospira (Weil's Disease) caught from rat's urine, and Syphilis, but it has many more genes and plasmids to generate its outer surface proteins (OSP's) so it can change its coat to avoid detection by the body's immune system.Which is why we get negative blood tests, as our current blood tests (serology) are very primitive and only pick up antibodies generated by our immune systems in response to OSP's presented to it.
Simple bacteria often move around by being driven by a rotating filament attached to one end, that acts just like an outboard motor,spins and moves the bacterium. Borrelia has a bundle of flagellae wrapped around its cellular contents, which act like an "inboard motor" and drive the bacterium in a corkscrew manner which enables it to penetrate every cell in the body. Classically it penetrates the cartilage of joints and causes an arthritis that appears to move from joint to joint, so-called "migratory arthritis", and which occurs even in young children. Infact it was first characterised because of an outbreak of arthritis in children.
It also gets into nerve tissue and causes mayhem, known technically as "neuro-borreliosis". Facial nerves are attacked and you get classic Bell's Palsy with droopy eyelids and jaw. This can spread to the intestine and cause signs of constipation and colic, known as 'Bell's Palsy of the Gut'. It can affect nerves feeding glands so there are many glandular effects. A big problem for some people is allergy. Many people recover from allergic situations when treated for Lyme.
If a suspected Lyme infection is treated within the first few (4 to 6)weeks of the actual infection, with reasonably high doses of even simple penicillin, it may be eliminated. But many people don't know whether they've been bitten, let alone when, as they may not have the classic tick-bite "bull's eye" rash.
Once the bacteria have penetrated deep into the tissues - they prefer the low oxygen levels found in cartilage, tendon, etc - they can be difficult, or often impossible, to reach with antibiotics. High doses and long courses are absolutely essential. Rotating antibiotics can help. The bacterium can also hideaway in the form of cysts, coccal forms, and in biofilms where they are neither recognised by the immune system nor touchable by antibiotics - just the same as Syphilis and Tuberculosis.
Special drugs called "CystBusters" like metronidazole can be used, in cycles, to get them out. But once established, you may have the infection for life, and you can only control, perhaps never cure, it with repeated courses of antibiotics.
One myth is that all antibiotics have potentially serious side effects, such as you may develop an allergy to penicillin. None of the side effects are unconquerable and are often worth the risk considering the life destroying effects of Lyme Disease. It is normal to prescribe long-term antibiotics for certain well-known diseases like TB, Brucellosis, and Syphilis. Lyme is at least as important as these.
The problem of resistant bacteria, like MRSA in hospitals, has everything to do with the hospital environment and hygiene and very little to do with the use of antibiotics. In fact, it is"under-treatment" of infections by doctors that has allowed resistant organisms to survive. If they used higher doses and longer courses in the first place, the organisms would not have had a chance to develop resistance.
By the way, drug resistance in Lyme doesn't seem to be a problem when antibiotics are rotated properly - it's co-infections like Babesia that cause the problems.
The Daily Mail Article
Could bacteria have caused your back pain? (And will a simple dose of antibiotics cure it for good?)http://www.dailymail.co.uk/health/article-1249524/Could-virus-caused-pain--And-simple-dose-antibiotics-cure-good.html#ixzz0f2f7pCjy
http://www.dailymail.co.uk/health/article-1249524/Could-virus-caused-pain--And-simple-dose-antibiotics-cure-good.html
Lyme is also known to cause backache and the link at the end of the article takes you into some excellent research which the Daily Mail ran an article on. Very well worth a read.
Lyme (borrelia) infection is, by conventional wisdom, usually caught from infected ticks, which by the way, are everywhere, as they are carried by birds and all domestic animals and wildlife. Hosts for ticks can be any small animal, like hedgehogs, so allotments often comprise hot-spots for Lyme. Even if you remove the tick before it has time to transmit Lyme, you can still get other serious co-infections from the tick, such as Bartonella (we call it "cat-scratch fever"). Babesia is a malaria-like infection. There’s a list of other infections including Ehrlichia, Tick-Borne Encephalitis and others which may not yet be recognised in the UK but which will become important with Global Warming helping the vectors (insects) to survive.
Lyme Disease can be transmitted by other biting insects like stable-flies, fleas, lice, mites - and can also be transmitted from a mother to her offspring, either via the placenta or through the milk. Or like syphilis, by sexual contact. It appears to be a linked to some autism in children and also Alzheimer's.
The scary thing about Lyme (Borrelia) infection is its effects on the body. It can mimic virtually every other disease. The bacterium itself is the most sophisticated known to man. Being a corkscrew-shape spirochaete it resembles its relatives like Leptospira (Weil's Disease) caught from rat's urine, and Syphilis, but it has many more genes and plasmids to generate its outer surface proteins (OSP's) so it can change its coat to avoid detection by the body's immune system.Which is why we get negative blood tests, as our current blood tests (serology) are very primitive and only pick up antibodies generated by our immune systems in response to OSP's presented to it.
Simple bacteria often move around by being driven by a rotating filament attached to one end, that acts just like an outboard motor,spins and moves the bacterium. Borrelia has a bundle of flagellae wrapped around its cellular contents, which act like an "inboard motor" and drive the bacterium in a corkscrew manner which enables it to penetrate every cell in the body. Classically it penetrates the cartilage of joints and causes an arthritis that appears to move from joint to joint, so-called "migratory arthritis", and which occurs even in young children. Infact it was first characterised because of an outbreak of arthritis in children.
It also gets into nerve tissue and causes mayhem, known technically as "neuro-borreliosis". Facial nerves are attacked and you get classic Bell's Palsy with droopy eyelids and jaw. This can spread to the intestine and cause signs of constipation and colic, known as 'Bell's Palsy of the Gut'. It can affect nerves feeding glands so there are many glandular effects. A big problem for some people is allergy. Many people recover from allergic situations when treated for Lyme.
If a suspected Lyme infection is treated within the first few (4 to 6)weeks of the actual infection, with reasonably high doses of even simple penicillin, it may be eliminated. But many people don't know whether they've been bitten, let alone when, as they may not have the classic tick-bite "bull's eye" rash.
Once the bacteria have penetrated deep into the tissues - they prefer the low oxygen levels found in cartilage, tendon, etc - they can be difficult, or often impossible, to reach with antibiotics. High doses and long courses are absolutely essential. Rotating antibiotics can help. The bacterium can also hideaway in the form of cysts, coccal forms, and in biofilms where they are neither recognised by the immune system nor touchable by antibiotics - just the same as Syphilis and Tuberculosis.
Special drugs called "CystBusters" like metronidazole can be used, in cycles, to get them out. But once established, you may have the infection for life, and you can only control, perhaps never cure, it with repeated courses of antibiotics.
One myth is that all antibiotics have potentially serious side effects, such as you may develop an allergy to penicillin. None of the side effects are unconquerable and are often worth the risk considering the life destroying effects of Lyme Disease. It is normal to prescribe long-term antibiotics for certain well-known diseases like TB, Brucellosis, and Syphilis. Lyme is at least as important as these.
The problem of resistant bacteria, like MRSA in hospitals, has everything to do with the hospital environment and hygiene and very little to do with the use of antibiotics. In fact, it is"under-treatment" of infections by doctors that has allowed resistant organisms to survive. If they used higher doses and longer courses in the first place, the organisms would not have had a chance to develop resistance.
By the way, drug resistance in Lyme doesn't seem to be a problem when antibiotics are rotated properly - it's co-infections like Babesia that cause the problems.
The Daily Mail Article
Could bacteria have caused your back pain? (And will a simple dose of antibiotics cure it for good?)http://www.dailymail.co.uk/health/article-1249524/Could-virus-caused-pain--And-simple-dose-antibiotics-cure-good.html#ixzz0f2f7pCjy
http://www.dailymail.co.uk/health/article-1249524/Could-virus-caused-pain--And-simple-dose-antibiotics-cure-good.html
Friday, 22 January 2010
NEUROLOGICAL SYMPTOMS, LYME DISEASE
Neurological symptoms are many and varied and can be diagnosed as many different illnesses, ME/CFS, MS, MN, ALS, Parkinson's, Autism and Alzheimer's. Some chronically sick patients of each of these illnesses have later been diagnosed with Lyme Disease or Lyme Borreliosis or Neuroborreliosis. That is not to say that everyone with these symptoms has Lyme Disease, but with the state of the controversy how many patients are properly assessed for Lyme Disease.
Dr. Daniel Cameron, (Past)President of ILADS (International Association of Lyme and Associated Diseases), describes neurological symptoms, the severity of the disease and its long term effects. Also covered is the difficulty of treatment, prevention recommendations and co-infections. The high costs to society are also discussed.
The presentation was made at a Lyme disease seminar on October 6, 2009 in the Candlewood Inn, Brookfield, CT. It was hosted by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.
UK charity Lyme Disease Action has much useful information on Lyme Disease.
On their website from their Leaflet Lyme Borreliosis in Neurology and Psychiatry:-
Information on Involvement of the Human Brain and Central Nervous System
As more becomes known about the possible long-term effects of neurological Lyme disease, also known as Lyme borreliosis, it becomes imperative that both the general public and medical professionals are made more aware of this disease.
The organisms that cause Lyme disease in Europe include at least three species within the bacterial genus Borrelia. These are Borrelia burgdorferi sensu stricto, Borrelia garinii and Borrelia afzelii.
People with this disease may develop an extensive range of symptoms that affect both the body and the mind. In many cases these symptoms are similar to those that may develop in the disease syphilis. This is because these bacterial (spirochaetal) diseases are closely related.
Main symptoms indicating nervous system involvement:
Symptoms of cognitive loss such as:
Memory impairment or loss (‘brain fog’)
Word-finding problems and Dyslexia/ problems dealing with numbers
Visual/spatial processing impairment (losing things, getting lost, disorganisation)
Slowed processing of information
Poor abstract reasoning
Losses in fields of attention/executive functions such as inability to maintain divided or sustained attention
Poor auditory and mental tracking and scanning (loss in ability to follow daily affairs, which is complicated by persistent distractibility)
Neurological symptoms and signs including:
Headaches
Neuralgia, i.e. nerve pain
Tremor
Panic attacks
Facial palsy, numbness and tingling, especially of the face
Cranial nerve disturbances such as - Optic neuritis, trouble swallowing, distortions of taste and smell, visual disturbance, certain movement disorders
States that mimic other defined neurological disorders such as Parkinson’s disease or MS
In children, indications of neurological involvement include behaviour changes, learning disabilities, school phobia, hypersensitivities of the skin and headaches.
Some patients have developed Lyme-related:
Psychoses including hallucinations and delusions
Seizures
Violent behaviour, irritability
Rage attacks/inability to control impulses/out of context crying spells
Depression
Anxiety/Panic attacks
Rapid mood swings that may mimic bipolar disorder (mania/depression)
Obsessive-compulsive disorder (OCD)
Sleep Disorders
An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome
Autism-like syndrome
A progressive dementia
Further Sources of Information.
*More information on treatment is available at the website of The International Lyme and Associated Disease Society (ILADS), a professional medical and research society. The document ‘Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne
Illnesses’ by Dr. Joseph Burrascano is recommended.
See http://www.ilads.org/
*The Lyme Disease Research Program at Columbia University, New York has further professional information upon the role of neurology and psychiatry.
Available at http://www.columbia-lyme.org/
*Dr. Robert Bransfield, a psychiatrist who specialises in infectious causes of neuropsychiatric illness, has developed a structured clinical interview to assess Lyme seronegative patients.
See http://www.mentalhealthandillness.com/
Dr. Daniel Cameron, (Past)President of ILADS (International Association of Lyme and Associated Diseases), describes neurological symptoms, the severity of the disease and its long term effects. Also covered is the difficulty of treatment, prevention recommendations and co-infections. The high costs to society are also discussed.
The presentation was made at a Lyme disease seminar on October 6, 2009 in the Candlewood Inn, Brookfield, CT. It was hosted by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.
UK charity Lyme Disease Action has much useful information on Lyme Disease.
On their website from their Leaflet Lyme Borreliosis in Neurology and Psychiatry:-
Information on Involvement of the Human Brain and Central Nervous System
As more becomes known about the possible long-term effects of neurological Lyme disease, also known as Lyme borreliosis, it becomes imperative that both the general public and medical professionals are made more aware of this disease.
The organisms that cause Lyme disease in Europe include at least three species within the bacterial genus Borrelia. These are Borrelia burgdorferi sensu stricto, Borrelia garinii and Borrelia afzelii.
People with this disease may develop an extensive range of symptoms that affect both the body and the mind. In many cases these symptoms are similar to those that may develop in the disease syphilis. This is because these bacterial (spirochaetal) diseases are closely related.
Main symptoms indicating nervous system involvement:
Symptoms of cognitive loss such as:
Memory impairment or loss (‘brain fog’)
Word-finding problems and Dyslexia/ problems dealing with numbers
Visual/spatial processing impairment (losing things, getting lost, disorganisation)
Slowed processing of information
Poor abstract reasoning
Losses in fields of attention/executive functions such as inability to maintain divided or sustained attention
Poor auditory and mental tracking and scanning (loss in ability to follow daily affairs, which is complicated by persistent distractibility)
Neurological symptoms and signs including:
Headaches
Neuralgia, i.e. nerve pain
Tremor
Panic attacks
Facial palsy, numbness and tingling, especially of the face
Cranial nerve disturbances such as - Optic neuritis, trouble swallowing, distortions of taste and smell, visual disturbance, certain movement disorders
States that mimic other defined neurological disorders such as Parkinson’s disease or MS
In children, indications of neurological involvement include behaviour changes, learning disabilities, school phobia, hypersensitivities of the skin and headaches.
Some patients have developed Lyme-related:
Psychoses including hallucinations and delusions
Seizures
Violent behaviour, irritability
Rage attacks/inability to control impulses/out of context crying spells
Depression
Anxiety/Panic attacks
Rapid mood swings that may mimic bipolar disorder (mania/depression)
Obsessive-compulsive disorder (OCD)
Sleep Disorders
An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome
Autism-like syndrome
A progressive dementia
Further Sources of Information.
*More information on treatment is available at the website of The International Lyme and Associated Disease Society (ILADS), a professional medical and research society. The document ‘Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne
Illnesses’ by Dr. Joseph Burrascano is recommended.
See http://www.ilads.org/
*The Lyme Disease Research Program at Columbia University, New York has further professional information upon the role of neurology and psychiatry.
Available at http://www.columbia-lyme.org/
*Dr. Robert Bransfield, a psychiatrist who specialises in infectious causes of neuropsychiatric illness, has developed a structured clinical interview to assess Lyme seronegative patients.
See http://www.mentalhealthandillness.com/
Tuesday, 12 January 2010
ME/CFS, FIBROMYALGIA, LYME DISEASE
Everyone with ME/CFS, Fibromyagia, MS, Psychiatric illness, Arthritis, Muscle problems, ALS, Parkinsons, Alzheimer's, Autism should watch this video through to the end. The controversy over Lyme Disease is such that patients are not properly assessed to exclude this illness and those who are diagnosed with Lyme disease are not always adequately treated so that years later their array of symptoms are not often linked back to the tiny tick bite.
Although this video was made in USA and includes Canada, Lyme Disease is also a big problem in Europe and that includes the UK. For more information check out my side bar.
More than 75% members of Eurolyme were previously diagnosed with ME and or CFS, some current members were diagnosed with Motor Neurons and Multiple Sclerosis on long term antibiotics our symptoms improve and we get our health and our lives back.
Blood tests for Lyme disease are only a 50/50 chance of a positive.
Do your own research and check this out.
Although this video was made in USA and includes Canada, Lyme Disease is also a big problem in Europe and that includes the UK. For more information check out my side bar.
More than 75% members of Eurolyme were previously diagnosed with ME and or CFS, some current members were diagnosed with Motor Neurons and Multiple Sclerosis on long term antibiotics our symptoms improve and we get our health and our lives back.
Blood tests for Lyme disease are only a 50/50 chance of a positive.
Do your own research and check this out.
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