Friday 30 April 2010

DENYING A DISEASE WHILST RESEARCH IS EVOLVING LEAVES PATIENTS WITHOUT TREATMENT

The controversies surrounding Lyme Disease and ME/CFS are both paralleling each other in not dissimilar ways. This leaves thousands of patients struggling with Chronic illness the World over whilst a handful of people have control of their disease refusing to listen to all the emerging science but sticking to the same old biased views.

If you like me have Arthritis, Fatigue, Muscle weakness, Peripheral Neuropathies or like others Neurological illness and have been diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lyme Disease, MS, MN, ALS and the list goes on then click into the following links and read the presentations.

The first is Pat Smith speaking on the subject of Lyme Disease taken from the CALDA blog. Pat is presenting to the Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Reading the list of speakers makes those of us knowledgeable about this illness laugh, if it wasn't so tragic, not one person speaking out from an alternative view, that of ILADS. Pat says it so well. Thank you Pat for all you do fighting the ignorance and denial of Lyme Disease which leaves so many suffering when treatments that can help are denied because those with power choose to close their minds to the emerging science.

Whittmore Petterson Institute Testimony of Annette Whittemore to CFSAC April 25th 2010

Thank you Annette for all your work in fighting for patients with ME/CFS despite our governments efforts to marginalise this terrible illness.

One day the truth will out as science finally catches up with the experiences of patients but until then doctors and researchers and those holding the purse must have an open mind.

Meanwhile as patients we need to get informed, long gone are the days when Doctor knows best, we need to steer our own way through these illnesses with the guidance of doctors prepared to listen and help us.

Thursday 29 April 2010

MEDICAL PANEL RUBBER STAMPS ITS OWN CONTROVERSIAL GUIDELINES

Once again I am disappointed in our National Media for ignoring what is going on over Lyme Disease not just in the UK but also USA, Canada and the rest of Europe.

They can't see what a medical disgrace is happening under their noses if they only took just a short time to read around the subject they would soon realise that there is something seriously wrong when thousands of patients the World over suffer chronic ill health, when simple antibiotics can be the key to their illness.

I was so lucky to have a doctor who realised that when my chronic symptoms of Arthritis and muscle weakness responded to antibiotics it was because I was suffering from Lyme Disease. I had been diagnosed with Fibromyalgia, ME/CFS and then Polymyalgia Rheumatica. I had x rays which indicated Rheumatoid Arthritis at that time the Arthritis in my hands was so bad that I could not lift a kettle even when 1/3 full and using two hands, even to blow my nose hurt my fingers. Now after long term antibiotics I have no pain, no arthritis and no disability and can garden again hence my other blog about my garden, Joanne's Cottage Garden. It took nearly 3 years of antibiotics to get well again. Something that the Infectious Disease Society of America, IDSA advises cannot be. They advocate a couple of weeks antibiotics and then a lifetime of steroids and anti inflammatory medication. No wonder our Health systems can't cope with the costs.

Thanks to ILADS and their guidelines I was treated on long term antibiotics and after 6 1/2 years of chronic illness have my health and life back.

ILADS International Lyme and Associated Disease Society gives their response to the IDSA decision to uphold it's discredited 2006 Lyme Disease Guidelines.

For Immediate Release: Judge, Jury = Status Quo:ASTONISHMENT AS MEDICAL PANEL RUBBER STAMPS ITS OWN CONTROVERSIAL GUIDELINES
Researchers on the sidelines tell thousands of sufferers that chronic Lyme doesn’t exist; no viable alternative explanations given
(Bethesda, Md)—Despite years of controversy, an antitrust lawsuit by the Connecticut Attorney General, and nine months of review, the Infectious Diseases Society of America (IDSA) double downed on its own controversial Lyme disease treatment guidelines with a status quo decision critics call “ highly suspect”.
“It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic,” says Dr. Robert Bransfield, President of the International Lyme and Associated Diseases Society (ILADS). “The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.” Treatment guidelines are crucial when it comes to healthcare because they may dictate whether patients can get diagnosed and treated for illnesses and whether or not insurance companies will pay for it.
Connecticut Attorney General Richard Blumenthal launched an investigation against the IDSA citing evidence that the authors of 2006 Lyme disease guidelines had undisclosed conflicts of interest that may have influenced their conclusions. He also charged that they failed to consider differing medical opinions. This landmark event represented the first ever lawsuit against a professional medical society for guidelines abuse.
The much anticipated verdict just released by a special review panel effectively rubber stamped the association’s earlier, contested guidelines. It limits treatment to three to four weeks of antibiotics. Physicians, Lyme patients and advocacy groups weren’t surprised but are dismayed that the panel decided to turn its back on the science - backed by 1300 pages of peer-reviewed articles, that proves Lyme disease can become chronic, debilitating and can be missed due to unreliable testing (as acknowledged by the CDC and FDA). Hundreds of thousands of patients and their families suffer from chronic Lyme disease. “By and large, the people on the IDSA panel who made this decision are ivory tower researchers”, says Bransfield. “They’re not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme.
Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including: • 68 out of 69 of the original 2006 recommendation under review were OK’d with unanimous votes. “How can there be such a total consensus with any scientific issue?” asked Bransfield. “It’s highly suspect and beyond comprehension.” • If Lyme cannot be chronic, then why did the guideline’s authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it? • The original guidelines are not only controversial, but written in 2006, are considered old and out of date. • The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time. • The IDSA’s decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver’s seat of diagnosis and treatment.
Lyme disease has reached epidemic levels across the United States. While the CDC reports 30,000 new cases a year, it recognizes that number could be as high as 300,000, making it a larger epidemic than AIDS.
Dr. Bransfield says ensuring the integrity of guideline development processes as they were intended to be used is critical to quality health care in the United States. “Conflicts of interest on guidelines panels are now a crisis,” Bransfield says, “It is time for Americans to realize how important the issue of guideline development is. Patient lives are at stake and no one is being held accountable when guidelines abuse place financial interests above patient care.”
Dr. Robert Bransfield, MD, DLFAPA, is available for media interviews on this and other Lyme related topics. He can be reached at:
225 Highway 35
Red Bank, NJ 07701
Phone: 732-741-3263
Fax: 732-741-5308
Cell: 732-861-5548
Email: bransfield@comcast.net

Wednesday 28 April 2010

LYME DISEASE, ME/CFS, XMRV

This open letter was sent to Eurolyme a few days ago and I decided to share it with anyone who reads my blog.

'I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.
When I read the paper in Science about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.
Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.
I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the Science paper. I would be happy to share with any physician willing to consider treating.
I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. Always treat the causative agent if you can. Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.
In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.
I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…
I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let other’s slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops.'
Sincerely,
Jamie Deckoff-Jones MD
Santa Fe, NM

http://treatingxmrv.blogspot.com/

From the Whittemore Peterson Institute

Questions and Answer Session with:Dr. Judy Mikovits: Principal Investigator, Whittemore-Peterson Institute

Q; With the known % of CFS patients positive for Mycoplasma species (~60% in multiple studies), Chlamydia pneumoniae (~10% in multiple studies), HHV-6 (~30% in some studies) and other infections, is there any concordance with XMRV positivity?

A: We have only done those analyses on the 101 in the original study, HHV6A was 10%, EBV ~14% and nothing else more than 10%. We are working with several groups at Lyme and those numbers may approach30%-40 of those tested.

Q: How might the finding of the XMRV virus relate to Lyme Disease?

A: We are seeing XMRV in Chronic Lyme patients sent to us from several physicians. The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme.

http://www.iacfsme. org/Portals/ 0/pdf/IACFS- Attachment4- April2010. pdf

Monday 26 April 2010

A MEDICAL DISGRACE CONTINUES

I have been debating how to post on my blog about the IDSA review decision on the Lyme Disease Guidelines.

My initial response was disappointment in my fellow man, my next well what a surprise! I don't think. The IDSA have followed their track of denial for too long now to bow their heads and reverse their direction, what are many thousands of wrecked patients lives and misery compared with the egos of their members?

It was interesting to read what is going around on the internet, CALDA has several interesting posts. There are several comments on newspaper articles Health News

'However, the committee’s affirmation of the guidelines is seen by some to be a whitewash because, they claim, the review process was biased.

Dr. Robert Bransfield, president of the International Lyme and Associated Diseases Society, said: “How can there be such total consensus with any scientific issue? It’s beyond comprehension.”
Bransfield added, “It makes me wonder about the accuracy of the process. This is what everybody was expecting that they would do: a process that would rubber-stamp it and basically validate what was there before. It’s a concern because it does compromise the best interest of patients.”

Another critic, Dr. Raphael B. Stricker, a San Francisco physician who treats chronic Lyme disease, said that “when the panel votes eight-nothing on almost every single recommendation, that suggests that there is something wrong with the process.
“Until we get a really objective review by an objective panel that’s not all in Infectious Diseases Society of America’s pocket, you are going to get the kind of thing you see with this, and that’s a problem,” Stricker said.

Lyme Disease Association response.

Lyme Disease Action initial response was that the truth is in the detail.

Yes there are some very interesting details in the full report and many recommendations which will not be dealt with until their next review one wonders why?

The Panel said, "in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary."

Well I guess we could all fit into that description.

Another extract from the final report emphasises that they are only guidelines so why then are they used to deny so many treatment?

“It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

So following the example of Jordan Fisher from Under Our Skin Documentary I decided to e mail the following to the IDSA in particular Carol Baker who I hold personally responsible for the manipulation that produced yet more denial of Chronic Lyme Disease.

In the circumstances I felt I was very restrained, although I realise it will make no difference I hope sufficient people are moved to do the same and clog up their e mail boxes, thus causing an inconvenience, mild compared with the years of unnecessary suffering the likes of IDSA are causing.

Carol Baker

Now you are getting over your elation at managing to coerce your fellow doctors into voting unanimously to support the 2006 Lyme Disease Guidelines, you might like to spare a thought for the many thousand of patients whose lives have been turned around by simple oral antibiotics.

I was one of the fortunate patients to be treated on long term oral antibiotics, one of many thousands around the World whose symptoms receded on antibiotics and deteriorated off them. Antibiotics improved my symptoms more significantly than either steroids or any NSAI medication had done.

I had severe arthritis and muscle weakness so that at one time I had difficulty standing and walking across a room. I could not walk up or down stairs for 3 ½ years and I was retired early on ill health grounds, it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. My doctor suspected Lyme Disease because of a beneficial response on a chance course of antibiotics. I was not aware of Lyme Disease but had visited the surgery at times of bites, bulls eye rashes summer flu' and migrating arthralgias. Other cases had been confirmed at my surgery.

I was fortunate to have a thinking doctor who treated me on my response to antibiotics because she read ILADS Guidelines. Eventually I consulted a Doctor who specialises in Lyme Disease and he confirmed my doctor's suspicions.

Politics and politics of medicine can argue indefinitely but my return to good health with no pain, no disability and no medication and to be able to garden again and cycle is good enough for me.

If IDSA wishes to close its mind to the benefits thousands of patients have, including doctors, to long term antibiotics and continues to support their discredited Guidelines because of the lack of Randomised Placebo controlled trials whilst it’s members hold the purse strings for research and refuse to do such trials the status quo may remain in their minds, but will not in the minds of patients who can make their own decisions.

The presentations to the IDSA review panel from ILADS supporters is available for the World to see and make their own decisions.

You may have won this battle but at what cost to patients.

Friday 23 April 2010

THE REAL ADVERSARY LYME DISEASE

The following excellent article by Elizabeth Maloney puts a very different emphasis on treating patients like myself on long term antibiotics. I was fortunate that my severe Arthritis and Muscle Weakness diagnosed as Fibromyalgia then ME/CFS, later Polymyalgia Rheumatica was eventually after four years diagnosed as Lyme Disease, my story is on my side bar. On long term antibiotics all my Arthritis and Muscle Weakness resolved. How many patients so sick they are retired early recover so well from Arthritis and Muscle Weakness. How many thousands of patients must suffer whilst our mainstream medicine turns a blind eye.

Thank goodness for doctors such as Elizabeth Maloney how lucky I was to have a thinking doctor who could see the benefits from long term oral antibiotics.

Elizabeth Maloney: We've much to learn about Lyme disease
Assertions in a recent article were based on unreliable evidence.
By ELIZABETH MALONEY
Last update: April 22, 2010 - 7:00 PM
http://www.startribune.com/opinion/commentary/91867889.html?page=1&c=y
The April 12 article about the resolution passed by the Minnesota Board of Medical Practice ("Activists and doctors divided over Lyme disease treatment") brought many questions to mind, including: "When did the Star Tribune morph into Fox News?" The article used buzzwords and themes known to inflame physicians, and it misled readers regarding the professional credentials and capabilities of physicians who recognize that persistent/chronic Lyme exists.
I am a family physician who has spent the last several years researching and developing educational materials and programs on Lyme disease; my current course for primary care physicians is accredited for six continuing medical education credits by the American Academy of Family Physicians.
Lyme disease is a relatively new illness. Our scientific understanding of it continues to evolve, yet basic questions remain unanswered. For example, we lack reliable diagnostic tests and tests of cures. Until we can separate the infected from the noninfected and the cured from the uncured, arguments over diagnostic and treatment approaches will continue.
This is especially true when it comes to the medical management of patients who remain ill after receiving commonly prescribed courses of antibiotics. Persistent infection has been demonstrated in multiple animal models and human case reports, and two schools of thought have developed.
The Infectious Diseases Society of America (IDSA) takes a narrow view, offering limited treatment options. The International Lyme and Associated Diseases Society takes a broad view, believing that doctors can best determine who should be treated and in what manner.
The IDSA is concerned about the "overuse" of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn't support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.
Thus, while the IDSA's viewpoint was emphasized in the April 12 article, it isn't scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.
What we don't know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today's patients can't wait for tomorrow's research.
Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient. Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.
The argument over treatment recently came before the Minnesota Board of Medical Practice. In March, the board passed a resolution placing a five-year moratorium on investigations based on third-party complaints concerning the prescription of long-term antibiotics. While the board was reportedly reluctant to pass its resolution, I applaud its leadership. The moratorium preserves the board's authority and buys time for additional scientific information to come to light. I'm confident we will learn much in the five years the board set aside.
The tone and material of the April 12 article may move papers and search engines, but it doesn't serve the public or medical communities. To my medical colleagues, let me suggest this: Rather than waste energy on what divides us from our patients and each other, let's put rhetoric aside and go after the real adversary, Lyme disease.

The IDSA is concerned about the "overuse" of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn't support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.
Thus, while the IDSA's viewpoint was emphasized in the April 12 article, it isn't scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.
What we don't know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today's patients can't wait for tomorrow's research.
Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient. Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.
The argument over treatment recently came before the Minnesota Board of Medical Practice. In March, the board passed a resolution placing a five-year moratorium on investigations based on third-party complaints concerning the prescription of long-term antibiotics. While the board was reportedly reluctant to pass its resolution, I applaud its leadership. The moratorium preserves the board's authority and buys time for additional scientific information to come to light. I'm confident we will learn much in the five years the board set aside.
The tone and material of the April 12 article may move papers and search engines, but it doesn't serve the public or medical communities. To my medical colleagues, let me suggest this: Rather than waste energy on what divides us from our patients and each other, let's put rhetoric aside and go after the real adversary, Lyme disease.
Elizabeth Maloney, of Wyoming, Minn., is a physician and Lyme disease educator.

Elizabeth Maloney, of Wyoming, Minn., is a physician and Lyme disease educator.

Thursday 22 April 2010

NHS SUPPORTS ILADS

Despite all the controversy over diagnosis and treatment of Lyme Disease it is good to see the NHS Map of medicine open minded to the fact that some patients may need long term antibiotics.
http://healthguides.mapofmedicine.com/choices/map/lyme_disease1.html

Fortunately it was my positive response to antibiotics which led my GP to suspect Lyme Disease. My Arthritis and muscle weakness significantly improved on a chance course of Amoxycillin given for chest throat and sinus infection. The record was on the computer when I had visited the surgery with bites bulls eye rashes summer flu and migrating arthralgias. Many of the over 2000 patients I am in touch with on Eurolyme do not respond quite so quickly as I did, but it is good to have access to the NHS Map of medicine when discussing treatment options with our doctors.

'Lyme disease
Last reviewed: 28-Jan-2010 Due for review: 29-Feb-2012 Printed on: 11-Feb-2010 © Map of Medicine Ltd All rights reserved
IMPORTANT NOTE
Last reviewed refers to the date of completion of the most recent review process for a pathway. All pathways are reviewed regularly every twelve months, and on
an ad hoc basis if required.
For terms of use please see our Terms and Conditions http://mapofmedicine.com/map/legal Page 7 of 9
• for late Lyme disease:
• cefotaxime is likely to be beneficial
• it is not known whether ceftriaxone is beneficial when given alone
• ceftriaxone in combination with doxycycline is not effective
In general:
• long-term antibiotic therapy in patients with persistent symptoms is thought to provide no additional benefit
• monitor response based on clinical improvement
• beware of potential adverse drug reactions
• Jarisch-Herxheimer reactions may occur shortly after start of treatment
• patients should have daily electrocardiograms (ECGs) during admission to detect evidence of cardiac conduction defects
The alternative view by the International Lyme and Associated Diseases Society (ILADS) is:
• treatment with antibiotics is needed for a longer duration than is currently common practice, especially in patients with
continuing symptoms (post-Lyme syndrome)
• some studies have shown that longer courses of antibiotics (eg one month of IV ceftriaxone) improve the primary outcome of
fatigue in post-Lyme syndrome as well as improvements in long-term cognition and physical functioning
In the absence of current consensus between IDSA and ILADS:
• longer course (more than 21 days) of antibiotics may be beneficial in some sub-groups of patients, eg Lyme encephalopathy,
post-Lyme disease, after consultation with Lyme experts'

What better Lyme experts are there than those affiliated to ILADS considering the thousands of patients they see most of which find their symptoms improve on long term treatment.

http://www.ilads.org/

Monday 19 April 2010

VIDEO ME/CFS



I watched the above video this morning on Laurel's blog Dreams at Stake.

Those with ME/CFS often have difficulties describing their illness in a way that others can comprehend, I thought this was such an excellent video. The song was Everybody Knows about ME, thanks to Cinder Bridge. The video was put together by Phoenix rising forum.

My diagnosis of ME/CFS turned out to be Lyme Disease and on long term antibiotics I have my health and my life back. So many other blogs I read, the symptoms of ME/CFS are so similar to my own and others with Lyme Disease. An earlier post I did remarks on an e mail I received from a ME/CFS specialist who says research shows more than 30% of patients with ME/CFS actually have Lyme Disease. However some seem to have Lyme Disease and not respond well to antibiotics clearly there is something else in the cocktail of infections that needs addressing, hopefully the recent research on XMRV will help many more patients struggling with chronic ill health.

Saturday 17 April 2010

DOCTORS WHO TREAT OURSIDE THE BOX.

I have heard many good comments about the work of Dr. Sarah Myhill from patients or parents of patients with ME/CFS. Many people suffering ME/CFS and also those with Lyme Disease know only too well how difficult it is to find a doctor that listens and really tries to sort out what our problems are.

I was shocked at the treatment I had from three Rheumatologists, arrogant to a point of rudeness, dismissive of my arthritis and muscle weakness symptoms and flippant, one suggested I gave up work when I explained how I was struggling to cope even after reducing my hours. Like he would have given up his income probably 4x what I was earning at that time, so easily.

I was very sorry to hear the latest action by the GMC in investigating Dr Myhill yet again.
http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing

I have found Dr Myhill's website very interesting and most of what I have read very informative and useful, quite a breath of fresh air in fact.
http://www.drmyhill.co.uk/wiki/Main_Page

It does seem so much like a witch hunt, hounding her because she has views a little different than the main stream in medicine. It is very worrying that doctors who treat outside the box are being hounded in this way, especially with the problems those treating Lyme Disease in the USA have had. It comes to something when States are taking the vote in order to protect their doctors from treating patients for Lyme Disease. I watched the hearing in Connecticut last year and what really struck me was the number of patients who must have suffered Chronic ill health from Lyme Disease for the situation to have got to the point of gaining the full support of their Representatives. The vote was unanimously in support of allowing Doctors to treat patients with Lyme disease freely rather than being threatened with prosecution by medical boards supported by IDSA's view of their discredited Lyme Disease Guidelines.

Dr Myhill's experiences do not bode well for the future of our precious few private Lyme Disease doctors in the UK who treat outside the box but who have success with long term antibiotics. The prospect of me being denied the only treatment that worked for me and being left struggling with chronic ill health and all that pain is rather scary.

I wish Dr Myhill well not just for her but for the future of medicine which must be allowed to evolve as new ideas and research is produced.

Wednesday 14 April 2010

ANTIBIOTIC APPROACH TO ARTHRITS FIBROMYALGIA AND OTHER ILLNESSES

The Antibiotic Approach to Rheumatoid Disease - The Road Back Foundation from The Road Back Foundation on Video.

The Road Back Foundation is dedicated to preserving the life's work of the late Dr. Thomas McPherson-Brown, a rheumatologist who believed in infectious causes for rheumatic diseases such as , rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. To learn more about this life-saving, proven, safe treatment and to meet other patients who have reached remission on Dr Brown's antibiotic protocols visit: roadback.org

Dr Brown died in the late 1980's but for 50 years he had successfully treated Rheumatoid Arthritis patients with antibiotics, only in the last few years of his life was Lyme Disease found to be a bacterial infection, he realised that some of his successes may have been related to treating an undiagnosed Lyme infection.

There is a lot of interesting information on this rather long video so many striking parallels to what I have learnt about Lyme Disease and the problems getting the medical profession to be open minded.

I was interested to hear Dr Brown talk about the treatments for Rheumatoid Arthritis prior to 1949 when it was considered that it could have an infectious origin. Sadly the onset of steroids in 1949 changed the treatment protocols significantly. Now most treatments are aimed at reducing the symptoms whilst no longer seeking to cure the cause of the illness, in other words palliative care, again much the sames as is happening in many other illnesses including chronic Lyme Disease symptoms unless you are fortunate as I was to find a doctor to treat as per www.ilads.org

Tuesday 13 April 2010

NEUROLOGICAL SYMPTOMS

Some of my more recent symptoms have been facial tingling, twitching, nerve pain in face and head which responded well to Clarythromycin. More recently I read that restless leg syndrome was considered to be a neurological symptom. Whilst restless leg syndrome were annoying symptoms that kept me awake many hours each night it was the least of my problems, with me my main troubles were Arthritis and Muscle weakness. I think my Neurological problems would be described as Peripheral Neuropathies.

On Eurolyme a chat line many of the other members suffer with severe Neurological problems, some have had MRI scans and some SPECT scans showing abnormalities although their consultants seem rather flummoxed by the results.

Brian Fallon is a leading doctor and researcher in the field of Lyme Borreliosis in Neurology and Psychiatry at Columbia University.

This article on MRI and Spect Scans was brought to my attention and could be useful when discussing scans with our doctors.

I have not visited the Lyme and Tick-borne diseases research centre site for some time and was very surprised how much useful information was there.

I rather liked the simple explanation of the controversy over the diagnosis and treatment of Lyme disease.

For those of us living in the UK, charity Lyme Disease Action has useful information on Lyme disease including Neurology and Psychiatry