What's Making Lyme Disease 'Tick'

The plays on words over Lyme disease and ticks are never-ending. Yet Lyme disease is a serious subject for all too many. There are possibly thousands or more already infected with Lyme disease who have yet to find out. Many have been misdiagnosed and continue to struggle with their health.

What really does make Lyme disease 'tick'?

Everyone seems to be in agreement that Lyme disease is a growing problem. One that beckons for more accurate testing and educated doctors armed with the understanding of how easily Lyme can be overlooked. Being a spirochete infection, it's not as simple as an illness just running it's course. Many of us remember Syphilis, and how it is/was called "The Great Imitator". Well Lyme is also a "Great Imitator", a stealth pathogen that comes as a package deal with other infections usually. It preys upon those with a weakened immune system that somehow lets the infection(s) take root. Many of us have weakened immune systems and are not aware of it.

Dr. Jemsek,  once an HIV specialist, is now helping 'pioneer' the way with Lyme disease. In this video entitled, "Dr. Jemsek Speaks the Truth", he tells of how similar Lyme disease is to the early HIV/AIDS days.

The University of California, Berkeley Wellness Letter - Sept 2010 published an article on Lyme disease.

This monthly newsletter can be found online in part at www.wellnessletter.com, however it is a paid subscription journal, so only the the first paragraph is available free online. A family member has been receiving a subscription for over 20 years.  I find the information usually quite current and helpful.

The Lyme disease article is entitled "What Makes Lyme disease Tick?",  please find it in full below. 

"What Makes Lyme Disease Tick"

Lyme disease turned 35 this year, but no one’s celebrating. Scientists first detected the tick-borne illness near Lyme, Connecticut, in 1975. In recent years, 20,000 to 30,000 Americans have been diagnosed with Lyme disease annually. The illness occurs in at least 44 U.S. states- with the great majority of cases in the Midwest and Northeast – and in every continent except Antarctica.

The good news is that you can do a lot to protect yourself from getting bitten by a tick. And if you develop Lyme disease it’s treatable with antibiotics.

Lyme disease 101

Certain types of ticks transmit Borrelia burgorferi, the bacteria that causes Lyme disease. One of the most prevalent carriers is the deer tick. Luckily, the disease is difficult to get because most ticks are not infected, and if they are, they usually have to be embedded in your skin for at least 36 hours to transit the infection.

If you do become infected, you may develop symptoms in 3 to 30 days. About 80% of the time, the first sign is an expanding red rash, typically around the bite site (even if the tick is not infected, the bite itself can cause redness around the site, usually less than an inch in diameter). Flu-like symptoms may also occur. If untreated, Lyme may cause a multitude of symptoms. The most common are facial paralysis, headaches, and heart rhythm disturbances.

Treatment: how much is too much?

If you have a rash and/or other symptoms, see your doctor. If I turns out you have Lyme disease, the recommended treatment is oral antibiotics for two weeks. For later-stage manifestations of Lyme disease such as neurological, joint, or heart problems, you will need another two weeks of antibiotics, usually given intravenously. Some people get better without treatment, but antibiotics shorten recovery time and prevent complications.

Many websites talk about ”chronic Lyme disease” or “post-Lyme syndrome” and claim this is a common illness, even though the terms really have no accepted definition. You’ll find assertions that antibiotics won’t cure Lyme disease, along with recommendations for alternative treatments. You’ll even find claims that the government is unwilling to admit how many cases of “chronic Lyme disease” there are. None of this is supported by scientific evidence.

Of particular concern is long-term use of antibiotics for Lyme disease. Taking them for more than a month has not been shown to have any benefits and, in fact, can be dangerous. Recently, a review panel of the Infectious Disease Society of America reaffirmed the group’s earlier conclusion that long-term antibiotic therapy constitutes “considerable risk of harm, including potentially life-threatening adverse events.” If a doctor wants you to take antibiotics for a prolonged period, get a second opinion.

How to protect yourself

Ticks are most active between April and October. If you spend time outdoors in areas where there are ticks, take these steps:

Þ    Wear light-colored, long-sleeved shirts, socks, and pants. Tuck your pants into your socks.

Þ    Apply a repellent containing DEET or picaridin on exposed skin, and spray permethrin on your clothes.

Þ    When you get home, look for ticks all over your body, including your scalp and groin area. Unless they’re engorged with blood, ticks   

      can be hard to spot. A magnifying glass can help.

Þ    Tick-proof your property by clearing brush and leaves.

Þ    Cats and dogs get Lyme disease, too. Check your pets regularily for ticks.

Þ    One bout of Lyme disease will not make you immune to future infections, so always take precautions when you venture into

      tick-infested areas.

What to do if you find a tick

If you find a tick embedded on your body, do not use a hot match, petroleum jelly, or gasoline to remove it. Instead, after cleaning the area, remove the tick with tweezers (preferably fine-tipped), grasping it firmly as close to your skin as possible, and pulling away with a steady motion.

Don’t twist the tick, since that may break off the mouth-parts and lead to an infection. Don’t crush, puncture, or squeeze the tick’s body. If the mouthparts break off in the skin, use tweezers, as you would to remove a splinter, then wash the bite site with soap and water.

 *****************

  Below I have taken excerpts from the newsletter's article and inserted some links, comments and references.



"What Makes Lyme Disease Tick"

 "In recent years, 20,000 to 30,000 Americans have been diagnosed with Lyme disease annually. The illness occurs in at least 44 U.S. states- with the great majority of cases in the Midwest and Northeast – and in every continent except Antarctica."

*According to Dr. Oz from his May 11 2010 television show, Lyme is found in every state, except Hawaii.
http://www.doctoroz.com/videos/avoid-bite-lyme-disease



"The good news is that you can do a lot to protect yourself from getting bitten by a tick. And if you develop Lyme disease it’s treatable with antibiotics."
*Lyme may be 'treatable', however without early detection the probability of successful treatment declines. Since the testing is not reliable most cases of infection go undetected. 

Lyme disease 101
" Luckily, the disease is difficult to get because most ticks are not infected, and if they are, they usually have to be embedded in your skin for at least 36 hours to transit the infection."
* I had the classic bulls-eye shaped rash, and yet did not see a tick on my body. The rash presented on my left inner wrist while camping at Long Point Provincial Park, Ontario Canada- July 2002. This is a highly visible area on the body and the only insect I saw was a mosquito that bit me in that area a few days before. Lyme disease is endemic is this region of Canada now- along the north shore of Lake Erie- a bird haven.
Yet the Internal Medicine specialist I saw stated I had not been anywhere that there were ticks!

 
"Flu-like symptoms may also occur. If untreated, Lyme may cause a multitude of symptoms. The most common are facial paralysis, headaches, and heart rhythm disturbances."
* So how is this 'multitude of symptoms' to be taken care of then and who is going to pay?

Treatment: how much is too much?
"If you have a rash and/or other symptoms, see your doctor. If I turns out you have Lyme disease, the recommended treatment is oral antibiotics for two weeks. For later-stage manifestations of Lyme disease such as neurological, joint, or heart problems, you will need another two weeks of antibiotics, usually given intravenously."
*How is it that it might 'turn out' that you have Lyme disease?-  with unreliable and largely unavailable testing combined with primary care doctors that are not yet fully informed about this disease, how are people to get a timely diagnosis if they do become infected?

"Some people get better without treatment, but antibiotcs shorten recovery time and prevent complications."
*Yes, is true, yet just a bit incomplete, to the point of being misleading.Some people who are HIV positive never do develop AIDS either..Antibiotics even when administered early, still do not prevent later complications in far too high of a percentage of people. Then there are those who are mis-diagnosed. The longer it takes to get an accurate diagnosis the more difficult and lengthy the treatment.
More needs to be addressed regarding the above quote, as this subject area is not quite as simple as as been stated in this newsletter.

'

"Many websites talk about ”chronic Lyme disease” or “post-Lyme syndrome” and claim this is a common illness, even though the terms really have no accepted definition."
* The award winning documentary, "Under Our Skin" follows the lives a several Lyme patients, showing that Lyme symptoms for many people often do continue on after conventional treatments.
From "Under Our Skin"'s Blog:  Chronic Lyme: Real or Imaginary?

A quote from the article Chronic Lyme: Real or Imaginary?:
"Instead, the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the “aches and pains of daily living."

From Pubmed, Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/?tool=pubmed

I find the information in this newsletter misleading, too much valuable information has been omitted. For instance the following Lyme treatment recommendations are from the Government of Ontario's website:
"If symptoms of Lyme disease develop, antibiotics should prevent further complications. The earlier treatment is received, the better. If the initial infection is not treated, symptoms involving the heart, nervous system or joints can occur."   http://www.health.gov.on.ca/en/ms/lyme/public/


So in response to the UC Berkeley's newsletter, it is only the 'definition' of "post-Lyme syndrome" that has not been accepted. This is not to say it does not 'exist'- just by what definition? It is important for the public to be aware that this debate is about what to call a set of symptoms, and who is going to pay.

This information could mislead many less informed people, if not clarified quickly.  The IDSA is policing itself- leading the public to believe they are not at risk of to the degree they really are. Lyme is endemic in many regions now. It is not easy to treat and the price being paid is far too high.


"You’ll find assertions that antibiotics won’t cure Lyme disease, along with recommendations for alternative treatments. You’ll even find claims that the government is unwilling to admit how many cases of “chronic Lyme disease” there are. None of this is supported by scientific evidence."
*This is simply not true- there is supporting evidence (more links to follow to refute this). TO state something as fact and declare it is true, just 'because we said so', is not a valid argument. The IDSA has not yet been held accountable for the poorly written Lyme disease treatment guidelines, and their conflict of interests.

Lyme being a spirochete infection, which is the same type of infection as Syphilis, can cause complications later on especially for far too many.. This is what the CDC has to say about late untreated Syphilis:
"The latent (hidden) stage of syphilis begins when primary and secondary symptoms disappear. Without treatment, the infected person will continue to have syphilis even though there are no signs or symptoms; infection remains in the body. This latent stage can last for years.  The late stages of syphilis can develop in about 15% of people who have not been treated for syphilis, and can appear 10 – 20 years after infection was first acquired.  In the late stages of syphilis, the disease may subsequently damage the internal organs, including the brain, nerves, eyes, heart, blood vessels, liver, bones, and joints. Signs and symptoms of the late stage of syphilis include difficulty coordinating muscle movements, paralysis, numbness, gradual blindness, and dementia. This damage may be serious enough to cause death.".


Please leave your feedback. This type of article on Lyme disease can stir an emotional response in those who have struggled with their health after being infected with Lyme. For many the journey has been very long and expensive. The cost has not only been in momentary terms. Yet it helps get our message received more readily if we remain calm and respond with logic and fact, rather than anger and sadness.

Here is the contact information off of the Newsletter's site.

   Get help regarding a question or problem about your subscription: this will take you to our online Subscription Department. You can also write to us at:

UNIVERSITY OF CALIFORNIA,
BERKELEY WELLNESS LETTER
Subscription Department
P.O. Box 420148
Palm Coast, FL 32142

Or call: 1-800-829-9170    Send a letter to the Editors of the UC Berkeley WELLNESS LETTER.


(Note: If you're a subscriber and have a question you would like to see answered in the Ask the Experts column in the WELLNESS LETTER, please go to the password-protected Subscriber's Corner to submit your question.)
   Send a question or suggestion to our web staff regarding the setup and design of this website.
   If you are interested in bulk subscriptions, premium sales, or customization, please email our Head of Special Sales or fax your inquiry to (212) 695-2936 .

Here is the link to the editorial board for the Newsletter:
http://www.wellnessletter.com/html/wl/wlMeet.html

Be Well



  *****************

Reflecting on an "Ordinary" Day with Lyme

Once again I awaken to the sound of my own heart pounding along with about 10 other symptoms that remind me quickly what Lyme Disease is all about. It’s a disturbing feeling when you first realize that it’s still there! I always hope that I will wake up one day and ‘it’ will be gone- possibly the whole Lyme Disease and co-infection ‘thing’ will have all just been a nightmare. 

As I lay there taking notes of what parts of my body are cooperating  today, I am reminded that ‘this’ is 
my reality and I must deal with it. Even though most of the world does not understand Lyme and what I am going through, it’s still as real as rain, whatever  label is put upon it.

 The symptoms that he average Late Lyme patient deals would compel most people to stay in bed.Yet the days and months and for many of us, years roll by and our symptoms are still with us. Some worse, some better, and even some new ones can crop up over time. 

I call us the ‘Lyme Pioneers’ since the medical community is still trying to prove what Lyme is and if it can become chronic? 

Usually in the “Lyme Cocktail” comes a few other co-infections and viruses. Along with probable heavy metal toxicity and maybe even a little micoplasma infection and more. 

For about eight years now I’ve been dealing with Lyme symptoms. I got diagnosed in 2006 almost four years ago soon. I have really learned how to make it part of of my daily routine is put on my ‘Positive Attitude Suit’. Rolling back over and just going back to sleep won’t get me any further in this journey through Lyme and co-infections. So I pep talk myself, finding the strength to get up and make it all work better than yesterday!   


Part of healing anything includes making wise decisions not only about what you do but also who you put your faith and trust in. Many people with chronic health problems lose contact with a number of their friends and family. 

We are just too tired to reach out as often as we did and so time just ticks by and the closeness often fades. I think if others truly understood what can happen with just one walk in the park with infected ticks, they would be more supportive of what is really going on with this controversial disease.

Ticks that are infected usually carry other infections besides “Lyme” (Borrelia Burgdorferi- Bb),

such as Rocky Mountain Spotted Fever (RMSF), Babesia, Bartonella, Ehrlichia, and more. With the symptoms being similar to other illnesses such as MS, ALS, Parkinson’s and more Lyme is known as the “Great Imitator” just as its cousin Syphilis was. 

Some of the infections are similar to Malaria and relapsing remitting fevers. Many can return months years later, as we can never kill all of any infection in our bodies. We just manage the infections and put them into remission. 

To this date technically the cure is unknown for Lyme and co infections. Yet many have regained their health through various methods. For some others the prognosis has not been as fair. 

When undiagnosed or worse even mis-diagnosed for years the patient is already so taken over by the infections that are thriving unattended, that recovery is slow and often not as successful. The vital organs are all affected within a few months Lyme Literate Doctors say.

My symptoms range from muscle tightness, repetitive strain type symptoms to tingling, osteoarthritis in two areas of spine, large joint pain and stiffness, digestive issues, skin problems  to nerve damage down the right side of the entire body plus another dozen or two. One of the more troubling ones is the visual problems including my heartbeat always pounding though my right eye and ear.

I’ve learned how to manage most of them enough that I can function.  Without the funds so far to get to a doctor that can treat Lyme I have had to pursue alternative methods as the money allows. Soon I would like to be seen by a Lyme Literate MD and a Naturopath, since under knowledgeable doctor’s care many people are having success. However to just continue to go to doctors who are not up to date on much about Lyme at all is exhausting and has become a problem for many Lyme patients.

Many Lyme patients have great difficulty finding a qualified doctor to treat their illness.  Many doctors have and are being investigated by the medical board for treating Lyme patients outside the IDSA’s guidelines.

The state of our health is caught in the middle of a controversy over who is going to pay for the long term treatments required. The IDSA is currently under investigation for conflicts of interests for these guidelines. They're policing themselves and Pharma and Insurance companies are pulling the strings it seems.

Both my son and I got turned down by one doctor since we already have been diagnosed with Lyme. This doctor is under investigation and could jeopardize his license if he treats us. Double jeopardy for us.

Not knowing this I left a couple of messages on their answering machine stating we have Lyme and need help right away. I was assuming we were on a wait list only to find out when I got the office in person again a year or so later that we could not be seen because of this. Meanwhile I have family who think I am not ‘trying’ hard enough to get treatment.

Is it any wonder that the average Lyme patient feels just a little misunderstood and invisible?

So out of this frustration “Lyme Love” was born about a year ago – early 2009. I have recently registered the business name Lyme Love and parked the domain name for the purpose of becoming a non profit in the near future. I am looking forward to what we are going to do with this Foundation.

My heart felt thanks to those friends and family who have stuck beside us during this very difficult time. A big thank you to all the online Lyme community- you are a continual source of strength and inspiration.

I was prompted today by a friend online in our Lyme community who asked if any of us ever  feel like giving up? It got me thinking about what keeps us going under adversity.

When I wake up every morning and feel my symptoms still there waiting to be recognized I remember my children. That fuels me up and provides that motivation and then I feel grateful that I am awake. Whatever it takes to keep us going. We have lost much with Lyme including many friends and family. Those that are left are amazing people and I feel a sense of gratitude for what I have.

My mom continues to be a source of motivation to me as do both my sisters and my brother.  Their compassion helps keep me going.

Alexis and Jason- 1995

I use to think getting a head cold or a flu was a challenge. Lyme is like the flu that never went away! It’s my hope that as we continue to form a strong Lyme Community online we will be able to reach enough people to get Lyme the attention it deserves. Even the CDC admits the numbers of tick borne infections is growing more rapidly than they are reporting. Estimates are that Lyme is growing faster than AIDS.

So it is time for the world to pay attention. This problem isn’t just going away!

Lyme Love is Sewing Pillows!

Little did I realize how precious  those pillows would become when I started sewing them in 2002. After having slightly injured my back the year before, I designed a few pillows to help get more comfortable.

That summer - July 2002, was when I showed the first tell-tale sign of Lyme Disease- the classic bulls eye shaped rash! It was on my left wrist and I never did see a tick.

                                                                                                                                 

The rash disappeared as did the flu-like symptoms, even before we got home from camping at Long Point Provincial Park (north shore of Lake Erie). A few months later I started to develop many seaming unrelated medical problems.

I continued designing new sizes and shapes of pillows to help support my ever increasing number of spasming muscles and sore joints. I remember thinking at the time, how peculiar it was that here I was making pillows and never had there been a time I needed them more! Starting around the Fall of 2002 I had to use a small pillow under my arm while driving my vehicle, in order to prevent my shoulder from 'dropping'. Not only was I starting to develop a repetative strain problem, but also tingles, shooting pains, headaches, Bell's Palsy and more!

 

Before ever displaying 'symptoms' (major ones at least), I left my career of 14 years in November 2001 to venture out on my 'own'. Having operated a family business during those years, I was excited to get my hands into some new projects. I had actually started 2 new ventures at that time. The 'pillow project' ended up being the 'after-thought'.

First were the Bolster pillows then the throw pillows with dolphins and Orcas- stuffed with whatever I could find! Next came the buckwheat hull filled pillows- November 2002, right when I was coming down with what we now know was full-blown Neuro Lyme with the typical side dish of multiple co-infections.

I started making all different sorts of shapes to wedge under my arms, legs, and neck.  This actually enabled me to function a little better. I'd slip a pillow under my lower neck for extra support while I would drive. Another smaller neck one for dentist visits helped enough to revise it a few times.

By 2004 I had developed over 50 different sizes and shapes- all very useful in my world.

It's interesting looking back now for me, realizing I had designed all those pillows during what was my worst stage of Lyme Disease and Co. I am still battling 'Late Lyme and Co.'. Not being diagnosed until June 2006 has made my road to recovery a rather bumpy one. That's another blog post some day.

I've decided to start sewing pillows again after being away from it for 3 years. I barely got the 'new'  name for the pillow business picked on Vancouver Island  ( we lived there- 2005- 2007). So for now the old name of 'Van Island Dreamz' stands. We'll see what the future brings. 

My very first Bolster pillow 

- made out of some 'extra' upholstery fabric my mom have given me