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.
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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