LYME DISEASE A COMPLEX ISSUE

Dr Horowitz Amy Tan and Andy Abrahams Wilson talking about the complex issues of Lyme Disease.

http://www.tribecafilm.com/news-features/features/Watch_Under_Our_Skin_Panel.html

http://underourskin.com/blog/?p=237

Many of you stopping by to visit this blog will wonder why I mention so many different illnesses. My own symptoms of Arthritis and Muscle weakness were diagnosed as Fibromyalgia, ME/CSF, Arthritis, Poly Myalgia Rheumatica and then after 4 years it was realised that it was Lyme Disease and on long term antibiotics I have my health back.

Other illnesses that have been found to be connected with Lyme Disease are Neurological such as ALS, Motor Neurons, Multiple Sclerosis, Parkinsons.

Neuro-psychiatric ie Autism spectrum, Dementia such as Alzheimer's and also Epilepsy or seizures as I posted about a couple of days ago.

This video is an interesting one to listen to, Dr Horowitz talks about the numerous patients he has seen who were previously diagnosed with MS and then found to have Lyme disease, Amy Tan talks about her Epilepsy Diagnosis.

The most important thing to realise is that the IDSA are really only talking about one species of Borrelia, what ILADS doctors are finding is a complex illness, as many people with ME/CFS are also finding. Not just an infection, Lyme Disease has many co infections often passed on with the Borrelia infection but patients also have problems with virus and other problems that arise from a compromised immune system.

LYME DISEASE IN THE MEDIA

A message posted on Can Lyme recently says that Dr Mercola will be talking on the Oprah Winifred show about Lyme Disease on March 2nd.
Lets hope the program does justice to the subject.

Dr Oz interviewed Kathy Fowler and Andy Abrahams Wilson Director of Documentary film Under Our Skin in November 2008, details can be found on Under Our Skin website with links into the first part of the radio interview.

Dr Oz talks about Chronic Lyme disease in the Oprah Magazine in November 2009.

"There is absolutely no doubt chronic Lyme disease [CLD] exists," says Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation. What's more, he adds, many of those who contract Lyme disease can also have tick-borne coinfections like babesiosis, caused by parasites, and their symptoms can easily be mistaken for those of other ailments such as chronic fatigue syndrome and fibromyalgia. "Like syphilis, chronic Lyme disease is a great imitator," Horowitz notes. He has seen more than 11,000 patients whose CLD he has helped to pinpoint using his own broad differential diagnosis, which looks at all possible causes of symptoms. Along with specific treatments for any overlapping conditions, he often prescribes a combination of targeted antibiotics to beat the infection, and says he has seen dramatic recoveries.
----------------------------------------------------

Whilst the controversy rages on, I was one of the few lucky people whose chronic illness 'presumed' Lyme Disease was improved by long term antibiotics. After 6 1/2 years of chronic arthritis and muscle weakness affecting nearly every joint in my body and many of my muscles I am now 100% recovered.

How many people with diagnosis like mine of Fibromyalgia, ME/CFS, Arthritis and Muscle weakness, Poly Myalgia Rheumtatica can say after 6 1/2 years chronic ill health that they are recovered.

My medication, just antibiotics.

When you look at the list of medications many people with Fibromyalgia, Arthritis, Poly Myalgia Rheumatica take, all far more aggressive than mine, one has to wonder how many of them like me have Lyme Disease, undiagnosed and how many on simple antibiotics could find their symptoms improve.

SEIZURES

One of the many symptoms of Lyme Disease can be seizures, below is a link into a conference in which the first one Pat Smith talks about her daughter who suffered with Temporal Lobe Epilepsy as part of her complex Lyme disease symptoms.

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=49:2008-insights-into-the-crisis-key-players-and-the-future&catid=164:lda-other-dvds-forums-a-medical&Itemid=557

http://www.lymeinfo.net/medical/LDSymptoms.pdf
Seizures page 33
"Along with or months after erythema migrans, cranial neuropathy or Lyme arthritis, the five children developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder." (1)
"Coma has been reported in at least five patients, and seizures of a variety of types, in at least nine: Partial complex, focal motor, and both primary and secondary generalized convulsive seizures have all been reported." (4)
"We describe a child whose first manifestation of Lyme disease was an acute, focal meningoencephalitis with signs and symptoms such as fever, headache, slurred speech, hemiparesis, seizure, and CSF pleocytosis. " (5)
"Another was a 40-year-old man presenting with epileptic seizures and MRI-detected multifocal lesions, which disappeared after repeated courses of antibiotics."



Details of presentations to the review panel of the IDSA Lyme Disease guidelines can be found at http://www.ilads.org/

These presentations leave you in no doubt of the fact that current blood tests for Lyme Disease can miss up cases and that for some people long term antibiotics are required.

With the controversy over the current guidelines how many people suffering seizures are ever properly assessed to see if Lyme Disease could be the cause.

An interesting case study - Tremor, Seizures and Psychosis as Presenting
Symptoms in a Patient with Chronic Lyme
Neuroborreliosis (Lnb) here 

ME/CFS XMRV DR MIKOVITS

Before I was diagnosed with Lyme Disease I had been diagnosed with Fiobromyalgia and then ME/CFS and then Arthritis and muscle weakness leading to a Poly Myalgia Rheumatica diagnosis, so I watch with interest how things are developing with new retrovirus XMRV. Like many I was disappointed to hear of the two UK studies finding no XMRV but remained sceptical about the method of those studies, below is an insight into those methodologies.

Dr. Mikovits - Dr. Cheney on XMRV and CFS Transcript (2/20/10)
extracts
I’d like to start with Judy and ask her a couple of questions having to do with how hormones might interact with XMRV, specifically androgens &/or estrogens, or even any other hormones. Judy, can you answer that?Judy – We know from work in the laboratories of Bob Silverman and Steven Goff from Columbia University that the retrovirus XMRV has what’s known as the cis-acting element, literally the on/off switch of the virus, two androgen and hormone responsive elements. And that means that when that virus, when the on/off switch sees certain hormones, it can turn it on &/or off, so what you would want to do is have a balance of hormones and not spikes. And we really don’t know a lot of how exactly they control the expression of the virus or the reservoirs that might be involved given the hormone sensitivities or switch of the virus, but there is a hormone responsive element to the virus that we think will be critical in understanding how it might cause disease. Cheney – I see. We’ve been looking at hormones here for several years now using the Echo Terrain Map technology which allows us to look at redox shifts, very sensitively in CFS patients. And we see, in cases of hormone testing, both on the scan or under the tongue, a rather transient and immediate responses from a redox perspective, both positive and negative. And my concern about that is that it may not necessarily reflect what happens downstream in case of a virus, but certainly redox shifts, positive or negative, might influence the virus. In that regard, my sense, over time, has been that, perhaps, a balancing act of hormones may be the best way to go and not to rely on one particular hormone to suppress it or worry about another particular hormone activating it. But it’s more about balance than any specific hormone.

Cheney – Okay. Why do you think peptide-T would actually inhibit XMRV? Is there a scientific basis for that? Or is just hoped that it will?Judy – Actually, no. On that note, Candice Pert who actually developed, discovered it and runs the company that has run clinical trials with peptide-T in HIV disease had actually, more than a decade ago, run a clinical trial in men with CFS and they saw improvement. And when our paper came out, she said – and I understand why now – she contacted me immediately and said, “We have an opportunity, we have some drug that is ready and certified by the FDA, so it’s a limited amount now, but we could run some small studies and actually follow XMRV. Peptide-T is known to interact with the monocyte, which is a cell type in your innateimmune response, that’s known to be infected in, and actually play a role in retroviral diseases. And as we mentioned, that was my PhD thesis. So, we actually had some sound scientific rationale to actually use peptide-T in this cohort with XMRV.Cheney – I’d like to explore another sort of generic issue and that has to do with testing. And beyond that, the recent reports out of the United Kingdom of negative results for the testing by PCR of blood in CFS patients. And beyond that, the fact that some patients who have been tested at VIPdx Laboratories in Reno using the WPI, Whittemore Peterson validated testing procedures are also negative. And so, I’d like you to comment a little bit about the reasons why you can get negative results and importance of methodologies.
Judy – The methodologies are really critical in studying XMRV because there’s as much that we don’t know about it as we do know about it. It is apparent from the UK studies as well as the German study in prostate cancer who looked at more than 500 samples and didn’t find XMRV either by PCR and some other techniques, it is clear that what we don’t know about the virus with regard to is – it’s reservoirs – what cells it’s living in, where it is in the body. As much as we do know about the virus, so unless you use all four techniques in the Science paper for isolating it and determining the presence of the virus - in that case, failure to detect it by PCR does not mean it’s not there. And even by the culture method that is used by VIPdx right now, we are working very hard to get the serology, which means that the patient would have had an immune response to the virus and we can detect that serologically in our paper, but we don’t have that test online yet as a diagnostic or a clear certified test yet, but we hope to have that test within the next month or so, as I’ve said, maybe within weeks, to be validated for clinical use. If you went just by the virus – that is, I can’t isolate it or VIP can’t isolate it by the techniques in our paper, and you have the antibody, it is evidence that you’re infected and since the retrovirus is a lifelong infection, we simply then just don’t know the reservoir where this virus is. So this is a very low copy number, meaning it is very low level in peripheral blood. And really, unless you use all four techniques that are described in our Science paper, and go to the WPI website where we have detailed the differences in the methodologies in the different studies to give you an idea of the complexity of the issues, but also what’s necessary to detect the virus. So, we will, very shortly, have all of the testing available.

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.

POLY MYALGIA RHEUMATICA

I was diagnosed with Fibromyalgia, ME/CFS and then Poly Myalgia Rheumatica after a sudden illness left me with severe arthritis and muscle weakness starting in my upper arms and upper legs. My GP suspected Poly Myalgia Rheumatica and a gave me steroids which immediately relieved the symptoms thus supporting her clinical diagnosis. My SED rate was 27 although earlier tests the year before were 8.

The rheumatologist I eventually saw whilst on a high dose of steroids (so was much more able to move), did not agree that it was Poly Myalgia Rheumatica he said my Sed rate would be about 75. He wacked a steroid injection in my hip before I quite figured out what he was doing. (It did not improve my symptoms).When I asked if my illness could be stress related he said, give up work. Yeah like on 1/5 of his income I could afford to just give in my notice, especially as I had already reduced my hours to cope.

He was the most arrogant and the rudest man I had occasion to talk to in my life. He did not accept my symptoms were all over in every joint and my body felt heavy and weak. He treated me for a sprain in my hip which he said could affect other joints causing Fibromyalgia and that I should come straight of steroids in very large reductions, within just a few weeks. What had I done wrong that made him so cross with me, perhaps it was me being on steroids or was it just his lack of understanding. I didn't ask to go on steroids and now I understand more, I wish to goodness I had not been put on them but I realise it was an honest mistake on behalf of my GP.

The result of even the first reduction of steroids was I had difficulty standing again or walking across a room. My GP said it was possible to have Poly Myalgia Rheumatica and a low SED rate, so she continued treating me on steroids.

It was a year later whilst still struggling to get off steroids, really struggling that a chance course of antibiotics improved my symptoms and led my GP to suspect Lyme Disease. The records showed when I had attended the surgery with Bites, bulls eye rashes and summer flu followed by migrating arthralgias and there had been other cases of Lyme Disease at the surgery confirmed by NHS blood tests.

Two other Rheumatologists had failed to diagnose my illness one insisting I had ME/CFS and the improvement on antibiotics were imaginary! I think not.

I came across an article written by Dr Virginia Sherr All-Overish-ness what a brilliant way to describe how I felt and many of you with ME/CFS or Fibromyalgia or Arthritis or Poly Myalgia Rheumatica will be able to also identify with what she says. (Her website has been hacked so link not available)

'It's the All-overish-ness, Virginia, the All-overish-ness."
A cadre of medical specialists thought his might be a case of Polymyalgia Rheumatica but the usual blood work was normal. With a sense of finality he insisted that I be satisfied with his version of a diagnosis whenever I asked him what was wrong. He always spoke as if I, a physician, certainly should understand as meaningful, this obvious, accurate label. At that time I could not; 10 years later I believe I do understand because I have experienced the All-overish-ness, myself.'
and
'I thought about the All-overish-ness Syndrome again. I had been sure that the new mattress that my husband and I had purchased was defective. It was so firm, I thought, that it made my hips ache. But when the aching spread to my hands and to my ankles, it became more difficult to blame the mattress.'

For years my hips were so painful that even two duvets between myself and the mattress did not enable me to lie on either side. So much in Virginia Sherr's article, I can identify with.

I recently posted my story on a Poly Myalgia Rheumatica patient support website here

I received an interesting reply, the story has not yet been uploaded because of work being done on the website but what the person said was much food for thought.
'What an interesting story. There was a survey done last year in Devon and Cornwall by a rheumatology clinical research Fellow of all people diagnosed with PMR. Less than 50% had PMR!will put your story on the web.'

Why so many different diagnosis and yet one possible cause Lyme Disease?Lyme Disease is ruled out by blood tests that can miss up to 50% of cases that is if you are lucky enough to even get a blood test. Well when you have read much, much more about Lyme disease from www.ilads.org you will start to understand that it can be the cause of many chronic health problems but because of controversies our health departments are only looking at a small part of the available research and missing out on the considerable research that supports ILADS views.

Science Journalist, Author Pamela Weintraube has written some very insightful articles on Lyme Disease links found on my side bar but also she wrote an amazing book Cure Unknown Inside The Lyme Epidemic. This book helps us to understand how the controversies have allowed medicine to be so skewed, that thousands of patients are not being diagnosed properly or receiving timely treatment that can help them, usually in the form of simple but long term antibiotics.

Pam Weintraube also interviewed Dr Virginia Sherr it is in three parts
part I https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-i
part II https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-ii
part III https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-iii

A local woman I spoke with recently, a nurse, raised her eyebrows when I mentioned Poly Myalgia Rheumatica. She said it is the 'in diagnosis there are so many people now in Surrey being diagnosed with Poly Myalgia Rheumatica'. Well I wonder how many of them too could in fact have Lyme Disease especially as I now know about a dozen other people in my town of Guildford being treated and getting better from Lyme Disease following ILADS guidelines.

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

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/

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?

DR CHARLES RAY JONES

The above was a clip from Under our Skin on doctor Charles Ray Jones.

The following a copy from California Lyme disease Association CALDA.

Letter from Dr.Charles Ray Jones:

February 8, 2010

Dear Friends,
It is time to update you once again on the status of the charges that I have been fighting before the Connecticut Medical Examining Board (CMEB). I cannot thank you enough for the many expressions of support and encouragement that you have been sending my way over the past several months. These have made a huge difference to me, enabling me to maintain my determination to prevail.
I also extend a hearty invitation to you to attend the next meeting of the CMEB, which will take place on February 16, 2010 at 1:30 at the Department of Public Health Complex, 470 Capitol Avenue, Conference Room C, Hartford, CT 06134. At that time, the Board will vote on the recommendations of the panel which has been hearing the most recent set of charges brought against me.

History and Overview
In this update, I will focus on the most recent developments in what has become a long series of charges and investigations by the CMEB and Connecticut Department of Health (CT DPH). For more detailed background information, I refer you to my letter dated September 5, 2008 , which is posted on the following website: www.lymesite.com
Currently, there have been two separate and distinct cases against me. The original case is under appeal, and the second case pertains to a new set of charges regarding a different set of patients.
In addition to this, we have learned that the court-appointed monitor has brought a number of complaints about me to the CMEB, which appear to be based on his reliance on the IDSA guidelines as the alleged “gold standard” for the diagnosis and treatment of Lyme disease. These currently are under investigation, but at this point no formal charges have been filed in relation to them.

First case:
I was brought up on a series of charges pertaining to two children from one family in Nevada, whose parents were involved in a post-divorce decree custody dispute. The children involved in the case were doing quite well and there was no allegation of harm done to either of them as a result of their treatment.
In its decision of December, 2007, the Connecticut Medical Examining Board (CMEB) imposed a $10,000 fine, a reprimand and two years of monitored probation. Despite these disappointing recommendations, this case was not lost. My license to practice medicine was not suspended or limited.
However, the CMEB introduced a very restrictive four part standard of care for Lyme disease at the very end of the proceedings. Left unopposed, this test would set a very dangerous precedent, and could be used against other doctors to shut down the treatment of chronic Lyme disease. It clearly had to be appealed.

Appeal of the First Case:
Most of the charges that I was found “guilty” of were stayed, or suspended, pending the outcome of the appeal, including the four part standard of care. The one exception was the monitoring requirement. I was required to find and pay for a board-certified pediatrician, licensed in the state of Connecticut, to conduct periodic chart reviews at my office for a period of two years. This was not an easy task: We contacted over 80 pediatricians before the current monitor was found; he was then approved by the CT DPH.
The grounds for the appeal have been described in my previous letter. One of them pertains to the discovery of significant bias on the part of one of the panel members, Dr. Senechal, who was recognized by a set of parents who filed affidavits stating that he had expressed very significant bias against me and other Lyme literate physicians, including the statement that doctors who treat Lyme are quacks.
A hearing was held in Superior Court to review the question of the panel member’s bias. The judge rejected our arguments. The case is now on appeal to the Connecticut Appellate Court; the brief in support of my position is due in April.

Current case(s):
The Department of Public Health then filed another series of complaints against me. This set of charges differs from the first case in that it involves three separate families, with the respective cases conjoined into one proceeding.
Although the exact facts differ, the cases are similar in that two of them involve non-custodial fathers filing complaints.
In none of the cases were any of the children involved harmed; indeed, as with the first case, the children all are doing very well.
The CT DPH called on Dr. Lawrence Zemel and Dr. Peter Krause to provide expert testimony contesting my treatment.
Following lengthy hearings concluding last May, a three-member panel has issued its “proposed memorandum of decision” (MOD). This will be voted on by the CMEB on February 16, following the presentation of oral arguments by both attorneys:

The third count involving one of the families was completely dismissed.
The testimony of Dr. Zemel was thrown out, with the panel characterizing him as clearly biased against physicians who treat chronic Lyme, and against many of the labs that they use.
The first count was upheld: this pertained to the charge that I had “improperly” ordered serology (diagnostic) testing prior to examining the patients. This seems strange, because, as far as we know, there were no patient complaints or patient harm. It is also difficult to comprehend why pre-examination testing should ever be the basis of disciplinary action against a physician.
The second count against me also was upheld. The issue here was the prescription of antibiotics to a patient whose symptoms were quite consistent with both Lyme and Babesiosis. I had obtained a comprehensive history from the referring practitioner who had contacted me about the case, and also from the patient’s mother. An ER had recorded an EM rash that went untreated My schedule was so heavily booked that I could not see the patient for a number of weeks. I was confident that the patient should be started on antibiotics immediately, and that the risk of not treating would be greater than the risk of treating. The patient did well.

In this case, the panel has denied that charges have been brought against me because I am a Lyme specialist. Instead, it has characterized its findings as generic and pertaining to
medical practice as a whole. This is why we have not been able to utilize the recently passed physician protection bill in Connecticut.

Nevertheless, it is rather difficult to understand why such matters should have ever reached this level, or why their two expert witnesses were specialists in tickborne diseases. There have been no patient complaints, other than disaffected fathers involved in contested custody or divorce proceedings, and no harm has come to any of the children, who in fact have done well.

Once again, the panel has not recommended that my medical license be revoked. They have, however, recommended the following sanctions:

Another $10,000 fine
Four years of supervised probation, with a monitor again hired at my own expense


Why I Continue to Fight:
Some of you have expressed dismay that the Connecticut Department of Public Health has spent so much taxpayer money on these charges. You have been concerned that they will continue to bring charges against me until I am forced to close my office.
This process has been undeniably stressful. It has been painful to see so much time, energy and valuable resources being expended on my defense. I continue to believe, however, that it is critical for me to continue to fight these charges and to prevail:
 We must stand up for what we believe and know to be right in the matter of diagnosis and treatment of tick borne disease.
 I am painfully concerned about the lack of effective care for children afflicted with tick borne disease. Because I decided to fight these charges when all of this began some six years ago, several thousand additional pediatric Lyme patients have received an appropriate diagnosis and treatment for their tickborne disease.
 A successful outcome for me will both hearten and protect other physicians who wish to diagnose and treat Lyme disease comprehensively, and will encourage other pediatricians in particular to train with me.
 We must send a clear message to health departments across the country that we will not be bullied, or allow our right to medical treatment to be trampled.

Legal Fees:

I continue to be grateful for the excellent defense that Attorney Elliott Pollack has been providing, and to everyone who has made this possible through donations to my legal defense fund. Please note that Attorney Pollack has achieved some significant victories: my license has not been revoked and, most recently, the decision to throw out the testimony of Dr. Zemel on the grounds that he is biased, will most likely put an end to his usefulness as an expert witness in proceedings against other LLMD’s.
The legal representation necessary to oppose these charges has been very extensive and complex:
multiple hearings have been held, each of which have required considerable preparation and review;
many hours have been spent helping witnesses to prepare to testify;
the filing of the appeal has been time-consuming but essential, and has entailed multiple appearances on the part of my attorneys in Superior Court, including three pretrial sessions.
New charges have been levied by the monitor which need to be addressed
Preparation and presentation of the oral argument which will be presented to the CMEB on February 16, after which they will vote on the proposed MOD.
This struggle has been costly, and I will continue to require your financial support in order to prevail. We have known from the outset that Pullman & Comley does not provide pro bono legal services, and Attorney Pollack is accountable to the partners in his firm.
To date, the cost of my legal defense over these past six years has amounted to approximately $700,000, most of which has been funded by donations to the legal defense fund. It is extremely painful to think of the resources of the Lyme community being spent in this way. At the same time, it is important to recognize that these charges are not unusual or excessive for a legal defense that has been as complex and lengthy as mine has been. There is a current outstanding balance of approximately $80,000. This will increase over the next few weeks as a result of the ramped up legal activity that will be necessary to address the CMEB decision, the monitor’s complaints and the ongoing appeal.
Ordinarily, Pullman & Comley does not allow clients to carry an unpaid balance on their account. They have been impressed by the stream of donations that so many of you have been sending, and have been unusually flexible in this regard. Each time that the unpaid balance grows, however, my legal representation is in jeopardy. It is necessary to demonstrate once again that the legal defense fund is solvent, and will be able to meet the cost of my legal defense.
Because of this, I am asking you to make a donation to my legal defense fund, in whatever amount that your circumstances will permit. I hope that you will continue to find the means to support this fight, despite the hardships which I know that so many of you already live with.
The current instructions for donating to my legal defense fund are noted below. These instructions also are posted on Kay Lyon’s website:
For those of you who may have additional questions not answered by this update, I invite you to send them to me by letter or by fax: 203-772-0682. Please reserve for telephone calls for urgent matters only, given the very high volume of patient calls that the office receives.

With warmest wishes,

Dr. Jones

Charles Ray Jones, M.D.

HOW TO DONATE TO THE LEGAL DEFENSE FUND:
Make Donations payable to: " Pullman & Comley Trust Account-for Dr. Charles Jones"Mail to:Elliott B. Pollack, Esquire c/o Pullman & Comley, LLC90 State House SquareHartford, CT 06103-3702Note "gift" in the memo field
To use PayPal to donate to the defense fund, click here.

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?

AN ODE TO HEALTH AND IGNORANCE

'What is it like to have a chronic illness? To have a disease which is very difficult to treat and to diagnose which isn't recognised in many quarters of the medical profession? Welcome to the world of Chronic Lyme Disease. A riddle, wrapped in a mystery, inside an enigma.'

This is an excellent radio broadcast which can be found through the following link.

http://www.rnw.nl/english/radioshow/ode-health-and-ignorance

An Ode to Health and Ignorance was produced by Chris Chambers. It was originally broadcast in September 2006. The program was awarded a Bronze Medal in the category Health/Medicine at the 2007 New York Festivals.

It is interesting to hear so many stories of people who suffered so many of the symptoms I had, Fatigue, ME/CFS, Arthritis, Muscle weakness, facial tingling, muscle twitching, swallowing problems and other neurological symptoms infact a soup of symptoms varying over time but eventualy attributed to Lyme disease.

Anyone wanting to find out more about Lyme Disease should see http://www.lymediseaseaction.org.uk/
and join
http://health.groups.yahoo.com/group/EuroLyme/

links are also in my sidebar

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 DISEASE IN THE TIMES

At last we have an article in The Times Newspaper on Lyme Disease. It is quite a good article written by a journalist about his experience with Cervical Myelopathy and Lyme Disease.

I am pleased to see he talks about Under Our Skin Documentary film it is time our UK media paid attention to this very important documentary and of course the controversy over the diagnosis of Lyme disease which is leaving so many thousands of patients the World over without diagnosis and without treatment that can help them.

I spent years with Arthritis and muscle weakness and was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica only to find that it was Lyme Disease and on long term antibiotics have my health and my life back.

I wish Alex well with his treatment, he had an EM rash for 7 months! and still several doctors failed to diagnose and he found his own diagnosis through the internet, clearly his case has been complicated by his spinal surgery, but then whose Chronic Lyme Disease case is not complex.

I do hope all you Lyme patients leave a comment on this article as I understand from Alex that he may well do a follow up once he has time to do some research and the more reaction he gets on line to the article the greater his chances of a follow up article.

I started this blog because of my frustrations with the media in the UK failing to cover the controversy about Lyme Disease. I posted about this Lyme Disease in the UK

However I would like to say a thank you to Alex and despite what I say in my article above on Lyme Disease in the UK, I am truly sorry for what he is going through. Those of us who have experienced Chronic Lyme Disease would not wish this illness on another person. That is why we try so hard to spread awareness, when we could just move on and get on with our lives, leaving innocent people and children to suffer because of ignorance.

JUVENILE ARTHRITIS, ARTHRITIS AND LYME DISEASE

Juvenile Arthritis is a terrible illness, Arthritis is grim the constant pain of my Arthritis was difficult to cope with let alone a child having to deal with it.

'The cause of JRA is not known. It is thought to be an autoimmune illness. In this type of condition, the body's immune system mistakenly attacks and destroys healthy body tissue.' extract from Medline but much the same wherever you look.

My arthritis has been cured with long term antibiotics because it was found to be Lyme Disease. It concerns me how easily doctors reach for medicines such as steroids to suppress the immune system and assume that they are dealing with an auto immune illness when in reality it could be just the opposite and therefore different treatment that is needed.

The symptom list below reads like that of someone with Lyme disease and yet as I say in my earlier post about Arthritis and Juvenile Arthritis how many patients are tested for Lyme Disease and how many doctors even realise that the tests can miss up to 50% of cases.

http://www.nlm.nih.gov/medlineplus/ency/article/000451.htm
Symptoms
Arthritis symptoms:
Joint stiffness when you wake up in the morning
Joint pain
Limited range of motion
Joints may be warm or swollen and sometimes red
A child may stop using an affected limb or may limp
Back pain
Body-wide JRA symptoms:
Fever, usually high fevers every day
Rash (trunk and extremities) that comes and goes with the fever
Swollen lymph nodes (glands)
JRA can also cause eye inflammation called uveitis. This problem can occur without any eye symptoms, or someone may have:
Red eyes
Eye pain
Increased pain when looking at light (photophobia)
Vision changes

Another post I wrote on Taking Control is worth reading. Ruth was diagnosed with Rheumatoid Arthritis at aged about 16 now 20 years later she has discovered it is actually Lyme disease and receiving treatment through a private clinic she is on oral antibiotics and getting her health back. Ruth regularly posts videos about her health and I saw a more recent video where she is still making good progress. How exciting is that for her to get her health back after suffering from Rheumatoid Arthritis for 20 years but how sad it is to realise that she will not be the only child here in the UK who was never properly assessed to see if her Juvenile Rheumatoid Arthritis was actually Lyme Disease.

BARRIERS TO HEALTH GUIDELINES?

ME/CFS, Fibromyalgia, Arthritis patients would do well to follow what is going on over the politics of Lyme disease.
Recently Lorraine Johnson CALDA posted the following do follow my link and read the full story.

http://www.lymedisease.org/news/lymepolicywonk/340.html

Responding to patient concerns, the President of ILADS, Dr. Robert Bransfield today delivered a letter to the IDSA calling upon the organization to remove barriers to guidelines change.

The controversy over the IDSA guidelines have caused many patients who like me suffered from ME/CFS or Fibromyalgia or Arthiritis to have many years delay before being diagnosed, many more will infact be unaware of what has caused their illness and symptoms and remain in pain without realising that treatment by long term antibiotics can help those of us who find their illness to be caused by Lyme Disease.

MEDIA COVERAGE LYME DISEASE

I am highly critical of the Media for their lack of coverage on Lyme Disease. I have talked to many journalists about my own symptoms of ME/CFS, Fibromyalgia, Arthritis, Poly Myalgia Rheumatica that eventually turned out to be Lyme Disease but they are dismissive of the need to print articles on what they believe is a rare disease.

Gill Reese and founder of Eurolyme recently posted this from the British Medical Journal.

BMJ 1999;319(7210) :649 (4 September), doi:Personal views
My years with Lyme disease
Chris J F Wilson
I first became unwell in the wake of some students sadly succumbing to the meningococcus. I had non-specific symptoms malaise, fatigue but with the photophobia, headache, and difficulty on my feet they were serious enough to warrant admission to the neurology ward for investigation. The investigations were thorough, but no cause was found. A label of "depression" was hung around my neck I was discharged back into the hands of a less than sympathetic university health service, and it was here that the mysterious spectrum of symptoms that graced my life earned me the title "malingerer, " chiselled deeply into my notes and even deeper into the clinical opinions of all those who saw me thereafter. My aching joints were scrutinised by the rheumatologists. The neurologists put me under the inquisition again, trying to find some explanation for the interminable headache. Ultimately, as is often the case, I was directed to the psychiatrists. A label of "depression" was hung around my neck, and I spent several months at a loose end, my studies on ice, convinced that I was not psychiatrically unwell, yet being swayed increasingly to the point of view that I was somatising. A rather unhelpful faculty of medicine hindered my progress, and for a few years I let my body smoulder away gently, reluctant to grace a doctor's surgery. A constant headache was my shadow, my joints protested, and I had strange things happening to my skin - things I ascribed to a bad mattress, poor posture, worn out running shoes, and a hot bedroom rather than anything else.In the end it was easier to live with the symptoms rather than be ridiculed by those from whom I might seek advice. I learnt to accept the devastating effect that this malady was having on myself but most importantly on others. Constant pain, feeling permanently hung over, being unable to stand properly, and soaking erstwhile sleep partners, courtesy of night sweats, did not augur well for relationships. It seemed odd to me that the first time that a proper history was taken was when we knew the diagnosis. I had seen numerous specialists, but nobody had actually taken a full history; a point I had difficulty reconciling and even greater difficulty putting across. I stumbled over the diagnosis myself just before sitting my finals.Walking one day at Haworth, in a moment of serendipity, it all became rather clear. The topic of conversation was tick borne diseases and a profound dénouement took place. Yes, before becoming unwell I did recall the rather pathognomic skin rash of Erythema chronicum migrans after climbing in Canada and Switzerland. Indeed I recollect the initial lesion very well. Out of curiosity I had mapped out its perimeter as it spread up my leg. All that followed was easy to ascribe in retrospect to the spirochaetes and their passage through my body. When the serology came back I was delighted to find myself with Lyme disease. It was the greatest positive affirmation that I could have wished for. Soon after finals I underwent a rather unpleasant course of chemotherapy and then started in clinical practice. The legacy of a decade of grumbling Lyme disease no doubt debilitated me physically. And the stigmatisation of a label and frank derision by doctors led to a gnawing psychological dimension. Towards those who did not take me seriously I do not feel bitter. I pity them and hope that nobody else falls foul of them. To those at Bradford Royal Infirmary who took me seriously and gave me a chance to flourish I can never extend enough thanks. I extend similar thanks to the communicable disease directorate in Sheffield and to supportive friends. Regarding the effect my illness has had on my own clinical practice, I hope that I can reach the zenith of equanimity and open-minded consultations that I might have benefited from. It was fortuitous to have discovered Lyme disease. I was not on any form of crusade. It was luck that the discussion about Lyme took place and that I happened to be in the right profession. Above all, I am fortunate that its course has been relatively benign. My awareness of Lyme disease pre-dated my discovery by four years or so, and I did ask myself why I did not think of it earlier. It was probably because I was not on a crusade. In any case I doubt if I would have been taken seriously. Rare as Lyme disease is in the United Kingdom, I suppose there must be a small but significant population of those suffering from undiagnosed chronic Lyme disease, and I hope that they have sympathetic general practitioners looking after them. A headache of sorts is my inseparable companion and from time to time reality, just like those ticks in 1987, bites.Chris J F Wilson, surgeon lieutenant.Royal Navyhttp://www.bmj. com/cgi/content/ full/319/ 7210/649

There were many responses to this article but the following caught my attention.

'Need for UK support group 10 September 1999 Paul Wright,Consultant Microbiologist Conquest Hospital, St Leonards on Sea, East Sussex Re: Need for UK support group I read with interest the personal experiences of Chris Wilson and his Lyme disease. Once again he has shown how difficult it can be in the UK to secure this diagnosis and receive the most appropriate advice and support. In August 1996 the "Daily Telegraph" magazine published an article about Lyme disease. At the end of the piece was an offer of a copy of the Association of Medical Microbiologists' leaflet on Lyme disease. Within a month of publication I had recieved over 900 requests for the leaflet. Most requests were from people whose work or leisure activities put them at potential risk of this infection. Many of them had been unaware of the risk until reading the article. A signficant number of requests were also received from patients who told me they, or a close relative, had been diagnosed with Lyme disease but they had been unable to find out anything about the illness. Several reported that their doctor did not believe this infection existed - it was "just one of those fashionable Americian illnesses". There also appeared to be a lot of ignorance amongst doctors about the availability of diagnostic blood test. A frequent theme in the letters I received was the length of time patients had had the symptoms that they attributed to their infection. Accounts of arthralgia, fatigue, malaise, headaches, mood swings, months or even years after the diagnosis had been made, were common. I was left with the impression that in those fortunate patients in whom the diagnosis had been made and the required antibiotic prescribed then their doctor felt that was the end of their responsibility. Many patients were then left to their own devices to find out about,and cope with, their illness. At the time I was frequently asked if I knew of a support group for patients with Lyme disease and their relatives. I did not and to the best of my knowledge that is still the situation in the UK. In 1996 I had enough names and addresses to start up a small patient's group and indeed suggested this to number of them but nothing came of it. I am sure a Lyme disease support would be helpful both for patients and to educate health professionals. I must stress that I have no special expertise in Lyme disease and I did not write the leaflet I have described. I am the Publications Secretary of the Association of Medical Microbiologists and it is my responsibility to distribute the publications of the Association to those who ask for them. The text of this leaflet may be found on the publications page of the Associations website www.amm.co.ukRoutine testing for Lyme disease 15 September 1999'

Now over ten years later we have several support groups, the first being Eurolyme, which Gill Reese says was founded directly as a consequence of reading the comments to that article and with much support from Phyllis Mervine of CALDA - 'without whose advice and encouragement I'd have never got going with Lyme activism here in the UK!' says Gill.

From Eurolyme Gill started the annual conferences on Lyme Disease and through that Lyme disease Action was born. Since, there have been other UK groups such as BADAUK, Tick Talk Ireland and a recent research project Dartmoor Tick Watch to name but a few.

Patients are getting informed, the numbers diagnosed are growing,(including several doctors) and patients are getting better, using long term antibiotics according to ILADS guidelines. But although science has moved on and there is much good research/science that now shows the complexity of Lyme disease and the difficulty to treat, our Health Protection Agency remains in denial of these advancements. So the story of Chris Wilson has a common thread to so many more stories 2200 on Eurolyme, in fact not as rare as Chris suggested.

The ground swell is growing and patients are floundering, is this because of medical neglect caused by our HPA following IDSA guidelines which are so critisised for their discredited Lyme disease Guidelines and now corrupt review processes?

I owe my current good health to a few but ones at the top of my list have to be my GP, Lyme Doctor and Gill Reese.

Perhaps the occasional article in the newspapers has helped a little towards raising awareness of this tragic illness Lyme Disease, what a pity the media haven't yet grasped that this is in fact a bigger story, a medial scandal on a huge scale, greater than that in the early 1980's over the denial of HIV and AIDES.

ME/CFS, FIBROMYALGIA,LYME DISEASE, ARTHRITIS

Is medicine honest?
Are Guidelines reliable?
If a doctor says you can't have a pain or symptom because a blood test is negative does that make the pain magically go away?
Are all patients stupid?

These are questions we ponder when we are sick and doctors question our symptoms and illness because they don't understand. All my symptoms Arthritis, muscle weakness, Fibromyalgia, ME/CFS are not uncommon in the population but regularly dismissed by doctors even when we are severely disabled by them, how many could be caused by Lyme Disease like mine?

The guidelines our HPA follow in the UK are based on the IDSA guidelines in America. The controversy over IDSA guidelines grows and grows and just does not seem credible it is so extraordinary, certainly most people will be unaware of what is happening skewing the process that can have such devastating affects on diagnosis and treatment of thousands of people Worldwide.

'CAUGHT! IDSA violates antitrust settlement voting procedures'

Yes this was a heading that caught my attention but the news that followed appalled and frightened me.

Below is an extract from CALDA but take time to visit CALDA and read the full report.
http://www.lymedisease.org/news/lymepolicywonk/336.html

An example of the IDSA manipulation of the voting procedure.
The guidelines mandate that Lyme cannot be diagnosed without a confirming diagnostic test.The tests are known to be insensitive and flawed. Requiring a positive test means that many patients with Lyme disease will fail to be diagnosed. One panel vote described in the AG’s letter was whether this recommendation should be revised. Four of the eight panel members voted for change, without the panel first having voted to determine whether the recommendation was supported by the science. As the AG’s letter points out, this clearly means that had the panel voted in accordance with the Settlement Agreement, this recommendation would have failed as not properly supported by the medical/scientific evidence. Why? A vote to uphold this recommendation would have required 6 votes; however, the 4 votes calling for revision (eventhough predicated on a flawed procedure) plainly indicates insufficient evidence to support the recommendation. Thus, (a) the IDSA failed to vote to determine whether the science supported the recommendation, (b) substituted its own procedure regarding revision (requiring a supermajority vote to revise), and (c) thereby manipulated the voting requirements to achieve a result in its favor.

IDSA dictates the Guideline policy that affects the World our health and welfare and our children's is in their hands!

WHAT OTHER CO INFECTIONS ARE THERE?

Those of you who follow my blogs will realise that my illness was diagnosed as ME/CFS, Fibromyalgia, Arthritis, muscle weakness, Poly Myalgia Rheumatica before a chance course of antibiotics led to a diagnosis of Lyme Disease. It took many months of antibiotics before my symptoms finally resolved and I now have no pain, arthritis, fibromyalgia, muscle weakness, disability, I am no longer on any medication and can live a normal life.

One of the complications of Lyme Disease is the question of what else is passed onto us that can make our illness more difficult to test for and treat. Finding and identifying co infections can go a long way to helping patients get the right treatments.

This was an interesting video I came across on U tube. I am aware of Dr Sapi's valued work.

I will just point out that Lyme Disease is not just limited to the area being mentioned below but can be found widespread throughout America and Europe as well as many other countries.

'Dr.Eva Sapi is currently doing research on Lyme Disease ,one of the most common tick borne disease in Humans in the North western part of America . She is currently pursuing here research in Univ of New Haven, Connecticut. I am proud to be here student.'



I posted about Dr Eva Sapi in this earlier post about Biofilms because she was involved with finding Borrelia (Lyme disease) forming Biofilms. At that time I had been unable to find a link into Eva Sapi's work but since I have found this on Under Our Skin website well worth a read.

XMRV, ME/CFS, LYME DISEASE

Dr Judith Mikovits talking about XMRV retrovirus, ME/CFS, Fibromyalgia and Lyme Disease..

On January 22, Dr. Judy Mikovits, PhD, director of research for the Whittemore Peterson Institute for Neuro-Immune Disease, conducted a 2½-hour XMRV seminar in Santa Barbara, CA.

Dr. Judy Mikovits XMRV Presentation from ProHealth on Vimeo.

Dr Mikovits spends time answering questions.

She talks about other ongoing studies including big co-horts one of which is on patients with Chronic Lyme disease being done by Jonathan Kerr. She says patients with Chronic Lyme disease are treated on antibiotics until the infection is almost cured but then the immune system can't clear the infection and they become sick again. She hypothesise that perhaps if these patients are also infected with XMRV retrovius, which can affect the function of the immune system, that is why these patients get sick again.

Dr. Judy Mikovits XMRV Q & A from ProHealth on Vimeo.

This is a link into a transcript of the video questions and answers.

click here

JUVENILE ARTHRITIS

In 1971 whilst working in Wimbledon I visited a woman in order to interview her. I was shown into her living room and was surprised to find a bed in there, in which was her daughter aged about 11. The mother explained that she had Juvenile Arthritis and suffered from so much chronic pain, having arthritis in most of her joints, that she was bed ridden. I was shocked and it made a lasting impression on me. I learnt at that time that Juvenile Arthritis was very rare.

It was in the 1970's that Polly Murray was collecting data on children in her locality in Lyme, Connecticut that had been diagnosed with Juvenile Rheumatoid Arthritis. She knew that Juvenile Rheumatoid Arthritis was exceedingly rare and yet there were several cases in her neighbourhood, in her street in fact. Her investigations led to the recognition of what is now known as Lyme Disease. It was some years later in the early 1980's that Willy Burgdorfer recognised that Lyme Disease was a bacterial infection and he identified the spirochete, the infection was named after him Borrelia Burgdorferi.

During the 1970's Dr Charles Ray Jones Hamden USA found that children presenting with Juvenile Rheumatoid Arthritis also had other symptoms not like the classic cases he'd learnt at med school, he found they responded to antibiotic treatment, sometimes long courses. In time Dr Jones has become known as the Pope of the Lyme World treating many thousands of children the World over. He was the only Paediatric Lyme Doctor until recently.

In the UK some old statistics I came across state 1 in a 1,000 children have Juvenile Arthritis which adds up to 12,000 children under 16. I understand talking to a doctor recently that that figure is increasing so much that special clinics are now being introduced. Reading through Arthritis websites my heart sank reading that Juvenile Arthritis cases can start so similar to my experience with Lyme disease, illness, rashes, weakness, swollen glands and then migrating arthritis which can fluctuate and go into remission only to flare up again.

Lyme Disease is considered by some to be rare in the UK. The various Arthritis websites I have looked at rarely even mention it and yet it was documented as being around in Europe since the end of the Ice Age and doctors recorded it as far back as the 1880's.

If doctors don't look they won't find. One mother I heard of recently, her doctor had refused a test for Lyme Disease for her child, who had Juvenile Rheumatoid Arthritis. Where is the logic in that? Of course research shows that blood tests can miss up to 50% of cases of Lyme disease but surely our doctors still test or do they?

The pain I suffered with Arthritis was unimaginable, to think that children could suffer from that and not even be tested to see if they like me could have Lyme Disease is incomprehensible. I was so lucky to have two pioneering doctors treat me on long term antibiotics and now be without pain and disability.
For more information about antibiotic treatment and Arthritis see www.roadback.org
and for links into information about Lyme Disease see www.lymediseaseaction.org.uk

Below is a recent video which includes an interview with Dr Jones.