The Semantics of Lyme

This morning I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

 

Lyme and Lyme Induced Autism

This Spring Lymenaide and And What Productions filmed an interview with Dr Chitra Bhakta.

Dr Bhakta is a DAN  (Defeat Autism Now) and an LLMD. She spoke with us about Lyme Induced Autism, Lyme disease and treatment.

The whole 2 part interview can be watched here.

 

Book Review // Healing Lyme Disease Naturally: History, Analysis, and Treatments, by Wolf D. Storl

every well-stocked purse should have a BPA-free water bottle and a book

 

I just finished reading Healing Lyme Disease Naturally: History, Analysis, and Treatments, a new book by anthropologist Wolf D. Storl.  I was totally obsessed with this book and couldn’t put it down. It contains so much information about the history of Lyme, various theories on the disease, as well as treatment methods. Storl’s experience as a well-seasoned anthropologist is evident in his exploration of the relationship between medicine, culture, and politics.  He is fairly radical in his assessment of the way that Lyme Disease and ticks are portrayed and the way that the relationship of epidemic disease, advances in medicine and technology, and general cultural trends have effected our relationship to nature.  At times, he is quite esoteric, discussing the possibility that ticks are really messengers from the Earth, encouraging us to listen more closely to nature and return to the wisdom of the ancients.  He even dives headlong into a discussion of shamanistic tradition, mythology, and the planetary bodies.  This book is all over the place – and yet, I think it is totally approachable.

Storl is no stranger to Lyme Disease. He contracted it and suffered all the classic symptoms.  As someone intolerant to antibiotics, he sought out care using herbs. Eventually, he found his way to teasel root, and found it to be a vital part to his recovery.

I really appreciated this book.  It almost reads like an action novel – the pace is fantastic, and  and found myself learning something new with each turn of the page.  He looks tirelessly at the history of Lyme Disease treatment, as well as treatments of its spirochete sister disease, syphilis, and a variety of other degenerative chronic illnesses.  Throughout the book, he stresses the importance of our connection to nature, and dives into the shamanistic, herbal, and healing traditions of a variety of cultures.  And his knowledge of herbalism is admirable.  I already desire deeply to study herbs, but this book really pushed me over the edge!  The back of the book also contains a helpful herb index, something that I know I will be referencing constantly.  What I wouldn’t give to shadow him, man. 

Storl also discusses a whole life approach incorporating quality food, exercise, sunshine, and fresh air; it is a refreshing and logical, and there are many excellent suggestions for lifestyle changes that facilitate healing.  I find his discussion of how Lyme Disease changes people and causes them to often become more sensitive and have a hightened perception to be absolutely fascinating – and absolutely true for my own experience.  Storl also discusses the cultural notion of disease, the identity of disease, and the differences in treating a person vs. treating their symptoms.  It is like this book is reading my mind!

A primary focus of the book is the use of teasel root as part of the healing traditions in Eastern and Western herbal medicine. A modest plant with a remarkable history and an impressive medicinal capability, it grows commonly all over the place and can easily be grown in the garden.  The way that teasel combats the borrelia bacteria is completely different than the way that antibiotics do, allowing for a more complete recovery and more thorough cleanse of the system.  He said treatment can last about 3 months, which is exciting, considering that antibiotic treatment lasts at the very least 6 months and sometimes for years and years (I know some Lymies that have been on broad spectrum antibiotics for more than 5 years).  It can be taken as a tincture, as a tea, or as a powder, and has shown incredible efficacy for even very severe cases of late-stage neurological Lyme.

After thoroughly covering teasel, Storl dives headlong into the wide variety of other Lyme treatment philosophies, ranging from the Klinghardt protocol to Salt-C protocol to various “old world”-style treatments.  He gives a lot of information about helpful herbs that are useful, as well as nutritional supplements. My copy of this book is already underlined and dog-eared and written in with points to research further.  Then he dives into a really incredible description of how syphilis – a fellow borrelia bacteria – completely shaped modern history.  It blew my mind.  Then he asks a very intriguing and poignant question: will Lyme Disease have a similar effect?  The rate of infection is of epidemic proportion and the effect on the body is the same, so how will we start to see the larger, cultural effect of Lyme Disease in the years to come?

The thing that really threw me about this book was his absolute denial of the efficacy of antibiotic in chronic cases.  I am currently taking broad spectrum antibiotics for Lyme treatment, along with a variety of botanical medicines.  As someone generally suspicious of allopathic medicine, the decision to take antibiotics was something that I felt hesitancy about for all the reasons Storl lists in his book.  Long-term use of antibiotics has really negative risks, and I am starting to experience some of them – decreased digestive function, yellowing of teeth, and liver fatigue, to name a few.  Those things aside, I have seen massive improvement in my over all health since starting antibiotics, but intuitively, I feel like I need to bring in another tool that we don’t yet have.  I tend to think that coming at it from both ways – the antibiotic method and the “natural” method – seems to be effective for my system and my infection. But everyone is different!  My naturopath really loves this book, and I look forward to speaking with my LLMD about it in July at my appointment.

After my naturopath appointment this morning, we decided to add teasel to my protocol.  I’m building up to a full dose slowly, so we’ll see how I do on it, what kind of Herx reactions I have (they can be rather intense, I hear), and what improvements I see.  But my first drops are down the hatch and going to work!

Do you take teasel? What experiences have you had with it?

I would definitely recommend this book to anyone interested in herbalism, natural healing, or the history of chronic disease treatment, and would consider is required reading for anyone dealing with chronic Lyme disease.  Storl puts faith in nature’s ability to heal, but also puts responsibility on the patient to create an environment that facilitates healing.  His experience and the experiences of the others in the book are inspiring.  The book is intriguing, and stimulates you to ask many questions and self-reflect.  It has spoken to me so clearly with words that reflect my philosophy and desire for my own treatment.  Truly one of the best books I’ve read in ages.

Keeping on the Lyme theme (so much for light summer reading), I’ll be reading Pamela Weintraub’s Cure Unknown: Inside the Lyme Epidemic  very soon. I’ll be sure to let you know what I think about it when I’m done.  Right now I’m in the middle of Elizabeth Gilbert’s  Eat Pray Love, a beautiful, funny, and introspective book that I would recommend to anyone!  It is wonderfully timely and poignant, and providing a nice change-of-pace from the Lyme life.

peace and blessings,
Kim | www.affairsofliving.com

 

“Voices of Lyme Disease” radio program, hosted by Kim Christensen and Jeanne Marie Bain

Hi, this is your long lost Lymenaide constributor Kim! I apologize for my absence. I’ve been very busy blogging away on my own blog, Affairs of Living.  I’m working very hard on my cookbook of gluten-free, allergy-friendly, sugar-free recipes.  I’m working hard on healing from Lyme. I’m trying to maintain a social life. I’m growing a garden. I’m taking classes in Touch For Health, which I’m very excited about sharing with all of you.  In short, I’ve been a bit busy, and my blogging on Lymenaide has suffered!  Don’t think that I haven’t been doing my share of Lyme Awareness Month activism, however.  I’ve been talking about Lyme non-stop to anyone who’ll listen!

On Sunday, May 16 at 6 pm Central Standard Time, I will be hosting a live radio program with fellow fierce Lyme warrior Jeanne Marie Bain to help spread awareness.  We will hear stories from adults, teens, and kids who have been fighting for years to get the right diagnosis, and were surprised to learn that a little tick was responsible for all the chaos in their bodies. They will share insights, humor, and resources they’ve learned in their fight with Lyme disease and other Tick-borne infections.

If you live in Minneapolis, MN listen on 90.3 FM and in St.Paul, MN on 106.7 FM.  If you live anywhere else, you can stream it live online at http://www.kfai.org/through Windows Media Player or iTunes.  If you miss the live broadcast, the episode will be available online after the the broadcast for 2 weeks at http://www.kfai.org/waveproject.

I am honored and excited to have the opportunity to work with Jeanne on this broadcast, and am excited to be able to participate in sharing valuable and meaningful information through the forum of community sponsored radio.

If you have the time or the interest, please tune in and listen to the broadcast.  You may learn something new about Lyme Disease, you’ll hear meaningful personal stories, and you’ll get to hear my radio voice, which I’m told is very nice.  ; )

Voices of Lyme Disease

Live Radio Program with Kim Christensen and Jeanne Marie Bain

Sunday, May 16, 2010 at 6 pm CST on KFAI: Radio Without Boundaries

Minneapolis 90.3 FM   St. Paul  106.7 FM

Online Live Stream: http://www.kfai.org/

Download after the broadcast: http://www.kfai.org/waveproject

PS – I will also be on the radio June 19 – check out my Events page for all the info!

 

LLMDs now have protection in Minnesota…for 5 years

In a super close vote (8-6!!!) the Minnesota Board of Medical Practice (MBMP) just approved a 5-year moratorium on the investigation, disciplinig or issuance of corrective action based solely on long-term prescription of antibiotic therapy for chronic Lyme disease! The moratorium will allow physicians to treat chronic Lyme disease without fear of an unprofessional conduct action for non-compliance with the IDSA Lyme guidelines.  Physicians in Minnesota now have legal protection to treat patients the way that we need to be treated.  However, this only lasts for 5 years, a frustrating truth.  Read this article for all the details:  Chronic Lyme patiens win reprieve

Another article:  Minnesota medical board to “look the other way” regarding Lyme Doctors

As we know, the IDSA Lyme guidelines scare many physicians from treating Lyme patients with antibiotics.  This has led to doctors not wanting to diagnose or deal with Lyme in the least, so they glaze over it completely.  This leaves sick people undiagnosed, and for those of us who know we have it, it leaves us scrambling to find LLMDs. I flew to New York because I could get into a doctor there sooner than I could get in anywhere in my home state of Minnesota. That’s screwed up.  

In short, this is a huge victory for the Lyme community in Minnesota.  We were all celebrating the other night at the MInnesota Lyme Action Support Group (MLASG) meeting.  There are a lot of Lymies in Minnesota.  But like the rest of the country, we have surprisingly few LLMDs.  While legal protection of physicians prescribing antibiotic therapy is great, the next step is up to the doctors.  Legislation alone can’t get people the treatment they need.  Minnesota doctors need to start leveraging the freedom they have been granted.

They need to take it upon themselves to learn about Lyme.  They need to attend ILADS training. They need to see Under Our Skin.  They need to connect with IGeneX. They need to learn how to recognize symptoms, analyze test results, and make a clinical diagnosis.  They need to open their minds to the possibility that Lyme Disease is REAL.

I am thinking of the long list of doctors I’ve seen over the last 4 years (my estimation of how long I have possibly had it).  I haven’t gone back to my general practitioner since my diagnosis last November.  She wouldn’t test me for Lyme, despite asking her repeatedly over the course of many months.  She said my joint pain wasn’t bad enough, and that because I hadn’t seen a tick bite, I shouldn’t worry about it. My previous general practitioner thought I was a total crackpot.  Many of my symptoms manifested as allergies, food intolerances, and gastrointestinal problems, and the specialists I saw for that just told me I had allergies and IBD.  I think of the weird rash that took over my leg four years ago and the THREE physicians I saw in an attempt to deal with the wide array of symptoms that shortly followed.  Ultimately, my first naturopath was the care provider I had that finally got me a test. Granted, I had to convince her that I wanted to be tested.  She was open to it, learned more about it, and was able to consult with my current Lyme specialist naturopath to analyze the results correctly.  I owe her my life.

I am thinking how to best approach each one of these previous doctors.  I want to say, “HEY! Remember me? Probably not.  But I remember you.  And I have LYME. You missed it in me, you are probably missing it in others, and the time has come for you to learn how to diagnose it properly.”  I am trying to come up with some kind of proactive, encouraging letter to send  to each clinic I’ve seen over the years.  While I certainly haven’t seen as many doctors as a lot of Lymies, I think I’ve racked up a list of probably 15 or so in the last 4 years – a significant number compared to most people.  

Basically, I see this as a call to action.  I want to encourage my former physicians to become educated about Lyme, because if the doctors don’t start learning about Lyme, this legislation will go to waste.  I am hoping to work with some of the member of MLASG to come up with some kind of written information that we can give our physicians that will encourage them to learn more about Lyme and attend ILADS training.  As for me, this doesn’t change the way I plan on handling my treatment; I still plan on continuing treatmnet with my doctor in NY.  But when it comes to recommending people get tested and treated for Lyme, it is exciting to think there is the possibility that more doctors could provide these services.

Do any of you have anything like this already written up?  Have you approached your former doctors to tell them of your positive diagnosis?  I would like to work with people from my local MLASG as well as the larger Lyme community on creating a one-pager that we can distribute to our physicians that stresses the importance of their becoming educated on Lyme Disease.  Please leave a comment and let me know if you’ve done anything like this in the past!

MSLAG Logo copied from http://www.mlasg.com/index.html

 

Dietary Supplement Safety Act

Dietary supplements are products that contain one or more dietary ingredients such as vitamins, minerals, herbs or other botanicals, amino acids or other ingredients used to enhance the diet. In the United States, dietary supplements are available in a wide range of product forms, such as tablets, capsules, powders and liquids. (1)

On February 3, 2010, Sen. John McCain (R-Ariz.) announced that he would be introducing legislation that would amend the Dietary Supplement Health and Education Act (DSHEA) to give the U.S. Food and Drug Administration (FDA) additional powers over retailers and suppliers in the dietary supplements industry. (2)

“On February 4, 2010, Senators John McCain and Byron Dorgan introduced S. 3002, the “Dietary Supplement Safety Act.”  This legislation would mandate that every dietary supplement would have to go through a brand new process of government review in order to stay on the market… The supposed purpose of the bill is to make dietary supplements “safer,” which is ironic because dietary supplements already have an excellent safety record.  It also ignores the fact that the U.S. Food and Drug Administration, the U.S. Federal Trade Commission, and the U.S. Drug Enforcement Administration already have the powers they need to police the market. (2)

Yes, we should have the right to know what we are ingesting. The last time I checked, all my supplements had the ingredients listed right there on the box or bottle. I am confused by Senator McCain’s replies.

In all of the interviews I watched, no one asked about performance enhancing drugs. Yet McCain’s comments revolved around the poor athletes who unknowingly took some sort of supplement that contained what? Steroids? I didn’t think that was legal to start with.

I don’t believe that all supplements are innocent. There are many companies producing ‘supplements’ with false claims and potentially hazardous side effects. There are also those selling supplements that have no effect, good or bad, on anything but bank account of the company owners.

However, performance enhancing drugs/supplements are not the same as the supplements our doctors are suggesting us to take for our health. We do need to fear that our supplements will be taken away and turned into profit for drug companies. They will still sell them to us for sure, with a huge increase in price.

What the Bill means- http://www.citizens.org/?p=1913
Read a brief description of the provisions of the Dietary Supplement Safety Act of 2010.

1. http://saveoursupplements.org/index.php?src=gendocs&ref=SupplementYourKnowledge&category=Main
2. http://www.npainfo.org/index.php?src=gendocs&ref=DietarySupplementSafetyActof2010
Another Interview Question- http://www.citizens.org/?p=1941
Bill in Full- http://www.npainfo.org/clientuploads/regulatoryLegislative/2010%20Dietary%20Supplement%20Safety%20Bill.pdf

 

What Everyone Should Know About Lyme Disease

Lyme disease is the #1 vector borne illness in the North America and Europe. In the United States number of reported cases has doubled in last decade and the infection incidence has become larger than HIV. Lyme Disease is estimated to be the second largest infectious disease in the United States, hepatitis C being the first. Worldwide, Lyme Disease is rapidly spreading through Canada, Europe, and Asia. (1)

Often referred to as the great imitator, Lyme disease is rarely properly diagnosed at the onset of infection. The illness is commonly misdiagnosed as; Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS) which is often referred to as “Lou Gehrig’s Disease, Chronic Fatigue Syndrome (CFS), Autism, Attention Deficit Hyperactivity Disorder (ADHD), Lupus, Parkinson’s Disease and many other chronic illness and syndromes. A great many sufferers are told that they are not sick at all and are referred to a psychotherapist or told to, “get over it”.

Undiagnosed and misdiagnosed Lyme disease can lead to severe health problems including Fibromyalgia, Rheumatoid Arthritis (RA), Chronic Fatigue Syndrome (CFS), Bells Plasy, heart rhythm irregularities, cognitive defects, neurological symptoms, memory loss, brain fog, seizures, depression, anxiety, psychosis and more, including death.

It is estimated that there are up to 300,000 new cases of Lyme disease each year in the U.S. alone (2). Yet, only around 30,000 of them will properly diagnosed and reported by the Centers for Disease Control (CDC). The CDC themselves admit that the actual cases of Lyme disease could be up to 10 times higher than those reported.

Most people know that Lyme disease is contracted from the bite of a tick carrying the disease. What many do not know is that is can be passed in vetro to an unborn child and through blood transfusions. There are also reports that the disease may be sexually transmitted.

The Infectious Disease Society of America (IDSA) maintain that Lyme disease is, hard to catch and easy to cure. They insist that the infection is rare, easy to diagnosed and cured with two to four weeks of antibiotics. The IDSA further claims that chronic infection by the Lyme bacterium is rare or nonexistent.

The International Lyme and Associated Diseases Society (ILADS), a group of community-based physicians, argue that Lyme disease is not rare and tick bites often go unnoticed. Testing methods for Lyme disease are inaccurate and the vast majority of medical practitioners do not recognize Lyme and it symptoms.

By the time many Lyme patients are properly diagnosed their health has deteriorated far beyond what the IDSA’s two to four weeks of treatment can fix. Lyme opens the door to other opportunistic infections including additional tick borne illnesses that may have been contracted at the same time as Lyme. Viruses, parasites, candida and other bacterial infections not related to Lyme have taken control of the patients immune system.

Lyme Literate Medical Doctors (LLMDs), who are very hard to come by, tell the newly diagnosed it will be at least two to four years of treatment. There are no guarantees that they will get well though, some are past the point of no return. For many treatment is management, not cure.

Sources-

1. DR QINGCAI HANG, Lyme Disease and Modern Chinese Medicine
2. UNDER OUR SKIN

Additional Sources and Information-
ILADS
CALDA
KLINGHARDT’S TREATMENT OF LYME DISEASE

 

Big Brother is Watching Over Us

“Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of Men and deny equal privileges to others; the Constitution of the Republic should make a special privilege for medical freedoms as well as religious freedom.”

— Benjamin Rush, M.D. (circa 1787)

Benjamin Rush (1745-1813) was a colonial physician known as the “Father of American Medicine.” He signed the Declaration of Independence, served as the Surgeon General of the Continental Army, and opened the first free medical clinic at the Pennsylvania Hospital. (1)

Do you think old Ben Rush is sitting somewhere looking down on us with George Washington and Thomas Jefferson saying, “I told you so.”?

Medical care in our country is not a right nor a privilege. It is big business for profit. Insurance companies, pharmaceutical companies, doctors, researchers and even universities are all looking for their piece of the pie no matter the cost.

Those who stand in the way of this multi-billion dollar industry run the risk of being persecuted.

Like Dr. Charles Ray Jones, the physician in Connecticut who is accused of what? Making kids well? Don’t they normally award people for saving lives? Apparently if in doing it big business feels threatened it is not OK, better those kids suffer and die. Right and wrong don’t matter as much lining pockets.

Bills are currently being passed that will make it easier for doctors to treat Lyme disease with long-term antibiotics. Some states, like California and New Jersey already have protections in place that allow doctors to use long-term antibiotics without fear of losing their medical license (4). This is a big step in the right direction for effective Lyme treatment. For some of us long-term antibiotics are the only way we are going to get better. Standing in the way of their prescription should be considered cruel and unusual punishment. The drug companies should be happy, those antibiotics are EXPENSIVE! It must be the insurance companies that are fearing this move.

Others of us, even with these changes, are still being left out to dry. We aren’t using antibiotics at all. For some of us this is a personal choice, others of us failed on antibiotics. Sometimes man’s wonder drugs cause more harm than good. Many of us are left with alternative or natural treatments as our only option. This is definitely not profitable for the drug companies and an excuse for the insurance companies to ignore us.

Quinine has been used to treat malaria since the 1600’s. It remained the antimalarial drug of choice until the 1940s, when other drugs took over. Since then, many effective antimalarials have been introduced (3). Mepron the foul yellow synthetic poison is a much more profitable and therefore accepted treatment option. It might be covered at least partially by your insurance. At up to $1300.00 for a three week supply, you would hope they would help! Mine did, they paid $1.50 per bottle. Thank you big pharmaceutical business for making me poor. Both mepron and quinine are commonly used for the treatment of babesia in Lyme patients. Quinine Bark retails at around $14.00 for 100 capsules.

Damn hippies and their natural medicines. Our new fangled antibiotics are far more effective to anything in nature. Why, Man made them himself with his superior intelligence! He stole the idea from nature and patented it, the big cost of research and development should not be wasted on a medicine anyone can sell. After all, it is Man’s God given right to profit from Mother Nature’s gifts, brilliant!

I do believe that many of the advancements in modern medicine are, without a doubt, useful, necessary and in many cases superior to the primitive medicine of past centuries. That doesn’t mean that it is all better. Or even all good for that matter.

Some religions believe that God has provided all we need in Nature. Others believe that the hand of God has guided man to create these medical advancements, antibiotics and procedures. Neither is wrong.

I have a hard time though imagining any God giving high 5’s to the corporate insurance bigwigs as they turn their backs on those in need. When they get their big bonus as the result of weaseling out of covering the treatments people need to get well, I don’t imagine God joining them on their private jet as they whisk off to their 2nd home in the Hamptons.

Would any God approve of harassing doctors and charging them with crimes for saving children’s lives? No, that man is not God, he just thinks he is. In the case of Dr Jones these false idols assume the form of the Connecticut Medical Examining Board (CMEB) and the Connecticut Department of Health (CT. DPH). They have imposed a $10,000 fine and a four-year license probation during which time his practice will be monitored. Luckily they have not yet succeeded in forcing him to surrender his medical license.

Aside form the charges they have placed against Dr Jones, the CMEB, are also attempting to introduce a restrictive ‘four part standard of care for Lyme disease’. Jones warns us that this would set a very dangerous precedent that could be used against other doctors and shut down the treatment of chronic Lyme disease. (2)

Benjamin Rush was right. Medicine has officially organized into an undercover dictatorship that restricts the art of healing to one class of men and denies equal privileges to others.

-Ashley

SOURCES-
1. Benjamin Rush  http://www.conservapedia.com/Benjamin_Rush
2. Letter from Dr. Jones http://lymesite.com/Dr_Jones_letter_February_2010.htm
3. The History of Quinine http://www.statemaster.com/encyclopedia/Quinine
4. List of state protections regarding Lyme http://www.jemsekspecialty.com/legislation.php
5. More on Mepron http://www.drugs.com/cons/mepron.html

Dr Jones’ legal battle is far from over. He continues to fight not only for his patients but for the rights of all Lyme patients. If you would like to make a donation to help Dr Jones you can do so by following this link t0 THE DR. CHARLES RAY JONES DEFENSE FUND

 

This Disease Called Lyme

When I tell someone about my illness, I call it Lyme disease. However, borrelia burgdorferi is only one small part of that illness. My definition of Lyme disease, is something much bigger. Lyme, in itself, was the catalyst that opened the door and invited the rest of my disease to come out to play.

For me Lyme is the large branching tree of everything I have. Each separate infection/disease is only one branch; borrelia burgdorferi, bartonella, erhlichia, babesia, HHV6, CMV, EBV, parasites, amoebas, thyroid imbalance, hormonal imbalance, candida, heavy metals, food sensitivities, the list goes on. I don’t differentiate, I call it all Lyme. The reality is though, it is not all Lyme. Lyme is really only borrelia burgdorferi.

I often wonder how much confusion this causes. I have seen many people write online about how angry they are that their doctor has told them they are now suffering from X not Lyme. They are angry because they are still sick. Of course they are still sick. They most likely had more than just Lyme, borrelia burgdorferi, to start with.

When the laundry list of diseases is as long as most of ours are, getting rid of one infection, even if it is borrelia burgdorferi, is not going to make us well. It is only one step in this long process.

Even the IDSA says that one of the reasons that some of us remain symptomatic is, They had Lyme disease and another infection simultaneously and were only treated for Lyme disease. Each co-infection is, in fact, a different infection.

Putting aside all the monitory interests involved with the IDSA and Lyme disease, are they in part arguing semantics? Or, are we for that matter?

While I believe the IDSA guidelines to be flawed and most definitely not in the interest of the ill, I have to admit that Lyme would not be nearly as hard to treat if it was only borrelia burgdorferi.

I suppose I would even go so far as to say that if you saw the right doctor, and if you were diagnosed right away, and if you only had borrelia burgdorferi, then Lyme would be easy to diagnose and easy to treat with a short course of antibiotics. That is a few too many ifs for me. It may be the exception but it is most definitely not the rule.

I don’t believe that the literal Lyme disease, borrelia burgdorferi, is the same disease that the majority of us are talking about when we say Lyme. We have it yes, but it is only the trunk not the whole tree of our illness.

If you had noticed the small sapling growing, unwantedly, in your garden early on, you may have be able to simply pluck it out by hand. Now though, with the size of the tree and the span of it’s branches, you are very likely going to need a tree trimmer and a bulldozer to get to the root of the problem.

-Ashley

 

Seasonal Vaccination, Worth the Risk?

At my last support group meeting the subject of seasonal flu shots came up. Should we get them? And what about the Swine Flu vaccination?

Absolutely not, was the advice from my doctor, who is also the facilitator of the group. If you have Lyme your immune system is compromised. The last thing you should be doing is intentionally introducing viruses to your bodies.

Beyond that, the ingredients of the shots are horrifying, mercury is one of them! I had no idea, but I know my heavy metals are high, mercury being one of the worst.

A surprising number of stories were told by people in the group who attested to a vaccination being the trigger that pushed their illness to devastating levels.

This is a highly debated question especially at this time of year when the recommendation for the flu shot is promoted, encouraged and it is readily available. Many doctors including some LLMDs do recommend the flu shot.

So just what is in a regular flu shot? (1)

• Egg proteins: including avian contaminant viruses
• Gelatin: can cause allergic reactions and anaphylaxis are usually associated with sensitivity to egg or gelatin
• Polysorbate 80 (Tween80™): can cause severe allergic reactions, including anaphylaxis. Also associated with inferility in female mice.
• Formaldehyde: known carcinogen
• Triton X100: a strong detergent
• Sucrose: table sugar
• Resin: known to cause allergic reactions
• Gentamycin: an antibiotic
• Thimerosal: mercury is still in multidose flu shot vials

Most people are unaware that there is a controversy about vaccination.  They are unaware that there is another point of view about the benefits of vaccination.  They are unaware of the risks associated with this medical procedure. Where risk of injury or death is acknowledged, it is believed to be rare and inconsequential compared to the perceived benefits to individuals and society. (2)

With growing evidence that vaccinations may actually be causing chronic health problems and the attendant realization that the right to informed consent is being denied, a growing number of parents and concerned individuals are demanding that questions about safety and appropriateness be addressed. (2)

Read this letter -New York State Health Care Workers don’t want to be forced to get the flu shot

We do not want to receive these vaccines. Our educated studies of risks versus benefits conclude that the risks of the vaccine are greater than the possible benefits. You know us — you know we live by, “First, do no harm.” We have many times extended ourselves to you, but our research concludes these vaccinations are not a safe choice for us.

Watch this YouTube video -Doctor Admits Vaccine Is More Deadly Than Swine Flu Itself & Will Not Give It To His Kids

Obviously I am anti flu shot. The strains of flu included in the shot are only a guess as to what epidemiologists think will be the biggest flu viruses of the coming year. There are so many strains of flu, does potentially protecting yourself from those few really protect you from very much? I have only gotten a flu shot twice in my life. Both of those years I got horribly sick with the flu.

Whether or not you decide to get the shots is entirely up to you and should be discussed with your doctor as it pertains to you and  your personal health condition.

1. http://drtenpenny.com/the_truth_about_the_flu_Shot.aspx
2. http://www.know-vaccines.org/controversy.html

More on the subject-
“A Clinical Diagnosis, Really?” – By Kim Sampson
It’s Seasonal Flu Shot Season…but the Shot has Never Worked
Lymefriends.com forum- Lymies and the flu shot
18 Reasons Why You Should Not Vaccinate Your Children Against The Flu This Season

 

IDSA

Tell the IDSA how you really feel. This design is really not like me. If you knew me you would be surprised. But, I find that I am passionate about Lyme disease and these guys are a problem. I even went so far as to put this sticker on my computer.

I also have a dream about putting the design on mugs and having a whole box sent to the IDSA.

IDSA, Insolent Disregard for Serious Afflictions

Want to see more, vantolDesigns at cafepress.com

 

Insurance and LLMDs

Have you ever wondered why your LLMD is not covered by your insurance? Here is an article that helps to explain why.

A critique often voiced by those who don’t believe in the existence of chronic Lyme disease or in treating it with long-term antibiotics is that the health care providers who do are motivated primarily by financial gain. Practitioners who specialize in the treatment of Lyme disease are looked down upon by those who would believe that Lyme is an easily – treated condition. “Lyme-literate practitioners” (LLPs) are accused of convincing patients that their condition is chronic yet treatable in order to assure themselves of a steady income source. So, it comes as no surprise that patients question why LLPs do not accept insurance and why they charge higher fees than regular family doctors. Let’s take a look at this… the rest of the story

This article was published in Public Health Alert -Investigating Lyme Disease & Chronic Illnesses in the USA. The publication is available free online. You can also subscribe and have it delivered to your home, Subscriptions.

I highly recommend Public Health Alert as a resource. There are many good informative articles in each issue.

 

Lyme Rally in Canada

There is a lot of talk about activism on the Lyme boards lately. We should protest, we should rally, we should write a letter… Hopefully we will do something.

I have been watching the news from Canada lately where a current rally for better diagnostic tests is going on.

Canadian Lyme disease patients are calling for better doctor training and more accurate tests so sufferers can be diagnosed and treated quickly before their side effects become crippling and chronic.

At rallies across Canada this week, patients called for greater awareness of the disease within the medical community, and asked provincial governments to train doctors to recognize the disease.

read the full story -CTV.ca News

 

What is the controversy?

OK, I know what the controversy surrounding Lyme is. The thing I don’t get is why or how it exists. Money and conspiracy aside, how can anyone say chronic Lyme isn’t real.

I have test results that show I still have Lyme and co-infections. I had it in October, I had it in May and I have it now. If I continue to have positive blood tests, how could anyone say that I no longer have Lyme or that my problem isn’t Lyme?

Quite frankly, I don’t care what they want to call it. I just want to be treated for it so I can get back to my life.