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Thursday, April 30, 2015

May Day and Lyme Awareness Month

Tomorrow is May Day and Lyme Disease Awareness Month.  Please put a green ribbon on a tree in your yard or on your mailbox and wear lime green in order to raise awareness and show support for others with Lyme disease.  I will never look at this color again without thinking of Lyme disease.

Public Warnings About Lyme

I saw a posting on another site that asked why we don't see signs warning people about Lyme disease in state and national parks?  Why aren't there posters and public service announcements about Lyme disease?  Why aren't parents being educated about this disease, so they can protect their kids?  We have government mandated vaccines, but no warning about Lyme disease?

During the 1940's. polio was a major health concern in the United States.  It crippled many people, (including a U.S. president) and changed their lives forever.  Pools closed and people stayed out of public places in fear that they would catch it. Our government took action to educate our people, and when a vaccine became available, we were able to eradicate it.  Not so with Lyme disease.

Not many people know that we have had a U.S. president who had Lyme disease while in office. George W. Bush was treated for secondary Lyme disease.  Some have speculated that this is why his behavior, decision-making ability, and speech seemed erratic.  It was all kept very quiet and covered up.  I am not a government conspiracy believer, but our government has let us down with this type of inaction and silence when it comes to Lyme disease.  Many unlucky people will become crippled with Lyme disease and end up in a wheel chair or nursing home because of this silence.

The only state park where I saw any kind of warning about Lyme disease was in Ludington, Michigan.  There was a sign at the entrance to the campground and trails with a very large picture of a tick and a warning about the possibility of Lyme disease.  I read this sign and made a note of it.  Still, I didn't worry too much the first time that I saw it because I didn't know just how seriously ill that a person can get with Lyme disease.

Michigan and Lyme disease link:

Michigan government and Michigan DNR warnings:,4570,7-153-10370_12150_12220-26945--,00.html

Way to go Michigan, for warning your citizens!!!

Washington, D.C. and Lyme Disease

Lyme disease has been shrouded in secrecy, lies, and myths. Not many people know that we have had a U.S. president who had Lyme disease while in office. George W. Bush was treated for secondary Lyme disease.  Some have speculated that this is why his behavior, decision-making ability, and speech seemed erratic.  It was all kept very quiet and covered up.  I am not a government conspiracy believer, but our government has let us down with this type of inaction and silence when it comes to Lyme disease.  Many unlucky people will become crippled with Lyme disease and end up in a wheel chair or nursing home because of this silence.

Below is a link to a Washington post article about President Bush and Lyme disease:

Thursday, April 23, 2015

Lymph System and Lyme Disease

Is there any body part that Lyme disease doesn't harm?  If left untreated, it can and does seem to effect every body system.  One of the biggest problems that it causes is swelling of your lymph nodes throughout your body.

Scientists at the University of California, Davis, did research on how Lyme disease enters the lymph system and hinders the immune response.  They also go on to say that the immune system is thwarted in a way that prevents the body from developing an immunity to future infections. Since the body cannot develop strong antibodies to Lyme, the person can indeed be reinfected at a future time.

Using pressure points to improve lymph drainage:

Here is the link to the study:

How to drain your lymph:

Wednesday, April 22, 2015

Going, Going, Almost Gone!

At my last Lyme doctor visit,  I was asked to assess how close I felt to recovery.  I decided that I feel 90% recovered after just seven months of treatment.  I still have some knee swelling.  The left side of my face is swollen.  I still have ringing in my ears. But all of the pain is gone. Gone!  It took me three years to get the proper diagnosis, so my case of Lyme was quite advanced.  At times, I was in such severe pain that I thought I might die from this disease.  I thought that I might have to retire early and go into a retirement home. But then things gradually changed. Lyme disease improves by centimeters, then inches forward.  You don't realize that you are getting better, until you look back and remember how bad it once was a few months ago.  I consider myself to be one of the lucky ones. I know that many suffer in agonizing pain for years.  Some people never quite recover completely.  And sadly, some do not make it.

My advice is to keep trying.  Don't give up. Take care of you for once.  All of the little things that you can do to get better add up to something big.  Eat right, take all of your medicine on schedule, get plenty of rest, and eventually you will turn a corner for the better.  I read somewhere that you should be willing to try anything to get better (within reason), because you never know when something will be the key that unlocks the door to Lyme disease.  I think that is sound advice.

Tuesday, April 21, 2015

Maple Syrup For Lyme Disease?

CBS News recently ran a report about how pure maple syrup when paired with antibiotics can boost the effectiveness of the antibiotics.  The phenols in the maple syrup makes the membrane surrounding the bacteria more permeable to the antibiotic. The antibiotic can then stay in the bacteria and do its job to destroy it.  The article also says that the maple syrup is somewhat effective on its own at destroying bacteria.  This raises some pretty exciting possibilities for the treatment of Lyme disease and other bacterial infections.

You can draw your own conclusions by clicking on the link below:

In the meantime, pour a little extra pure 
maple syrup on those buckwheat pancakes!

Monday, April 20, 2015

Celebrities With Lyme Disease

Celebrities with Lyme disease have been sharing their stories with the press.  This month's cover of People Magazine has a feature article about a Canadian Pop singer who is recovering from Lyme. This type of press coverage will hopefully, highlight the risk of contracting Lyme from a tick bite.  Many countries, including Canada and Australia, do not recognize Lyme disease.  Patients there are having a difficult time getting tested and treated.  I think that we will continue to hear more about Lyme disease from the media in the future.  Lyme disease is on the rise this spring and numbers of cases are increasing in many states.

Recently, Ashley Olson (Mary Kate's twin) is struggling with Lyme disease and has had to put her career on hold.  Here is a link to that story:

Sunday, April 19, 2015

Lyme Disease and Dental Problems

One day I bit into my crisp, Granny Smith apple and one of my front teeth chipped off.  I rushed to an emergency dental appointment.  Luckily, my dentist was trained in cosmetic dentistry.  He did an excellent job of repairing the tooth.  That was my first clue that something wasn't right with my body. This happened just before I became very ill with Lyme disease symptoms.

Later, I wondered about that incident.  Since I was having extreme bone pain, were the two things connected?  When I finally found out that I had Lyme disease, I dismissed that idea.  I checked symptom lists for any kind of tooth decay or brittle teeth.  Now that I am in recovery.  I want to revisit the thought.

I am thinking that there is a connection.  I work with someone who has had Lyme disease for 8 years.  She was positively diagnosed after a tick bite (that she saw) produced a bulls eye rash.  She began developing multiple cavities.  She said that the disease reduces saliva in the mouth to almost zero.  Your teeth and gums essentially dry out.  The dry mouth produces cavities and brittle teeth.  Perhaps this needs to be added to the symptoms list?

I have purchased dry mouth oral rinse/mouth wash to help with this.  Chewing sugar free gum also will help.  Keeping a glass of water or reusable water bottle with you and taking sips throughout the day seems to help.  It has been suggested that oil-pulling with coconut oil will kill the bad bacteria in your mouth and make it less dry.  This may also prevent brittle and decayed teeth.

Since our conversation, I have read other accounts of dental problems and Lyme.  Some people, including myself, have jaw pain and jaw swelling.  This is something that I also had checked at the dentist's office.  Though swelling in other parts of my body has disappeared, this problem remains.

Removing spirochetes (Lyme) from your mouth:

I am including a link to one woman's account of dental problems and how she solved that for her family.

Saturday, April 18, 2015

Can't Afford Testing? There Is Help and Hope!

Thankfully, there are resources for those people who cannot afford testing for Lyme disease.  Many who have Lyme, are too sick to work and lack insurance.  For others, their insurance may not cover Lyme disease.  Insurance also may not cover testing at some of the most reliable Lyme disease labs.   I had to pay for my own Western Blot tests.

There is an organization that can help with these costs.  You will need to read the eligibility requirements and fill out an application form.  Funds are limited, and first come first serve. Click on the link below to find the forms.

If you would like to make a donation to help support others with Lyme disease, they are taking donations to help with this worthy cause.

A source for grants for children with Lyme 25 years old or younger:

Another source of financial assistance is available for children who have Lyme disease.  Funds are available for both testing and treatment of Lyme disease.

Help with rent, medical bills, or utilities for those unemployed because of Lyme and Co.:

Help for children with a serious illness and related disabilities:

A new type of Lyme disease test:

Many people use crowd funding to pay for living expenses, travel, and medical bills when they have chronic Lyme disease or have no medical coverage for Lyme disease.

If  you are able, please help contribute funds to help others get treatment.  There are many who are suffering.

Sunday, April 12, 2015

Wearing Lyme: Strange Symptoms

Lyme disease has a wide variety of symptoms.  From what I gathered, the symptoms vary from person to person.  For me, the first symptom that something was wrong, was that I had a stiff neck.  I had what seemed like a flu or upper respiratory infection.  I went to the doctor and was prescribed antibiotics for the infection.  The upper respiratory infection did go away, but the neck pain worsened.  Soon the pain began to creep down into my shoulder, and then gradually into my wrist.  All of the pain was initially limited to my neck and arm area on the right side of my body.  My doctor told me that I had arthritis, even after my Elisa test for Lyme came back positive.  He then prescribed prednesone which made it worse.  After that, all hell broke loose.  My knees and upper thighs swelled like balloons over night.  I was in excruciating pain.  I wasn't sleeping at night.  My breasts also swelled up.  I looked so bloated.  I gained 15 pounds in a short time.  My legs felt like they weighed 100 pounds a piece.  My wrists were weak and I began dropping things.  A cup of coffee felt too heavy to lift.  I had trouble opening door knobs and turning on the shower and the pain had spread to both hands.  Small bumps would form on my wrist joints that looked like Baker's Cysts.I couldn't stand to be touched because it hurt.  Even though I initially had a positive Eliza test for Lyme, my doctor told me that it was a false positive.  He told me to go see a Rheumatologist because I had Rheumatoid arthritis, not Lyme disease.

After seeing two arthritis doctors and progressively getting worse, I decided to throw away the methotraxate pills and try to find someone who treats Lyme.  In the meantime, I had an annual mammogram that revealed some sort of mass in one of my breasts.  I was  told that there was a pretty good chance that I had cancer.  (This was the second time I was told that I had cancer.  A Russian arthritis doctor told me that I had cancer. When it turned out I didn't she decided I had rheumatoid arthritis.)  I had some repeat mammograms, an ultrasound, and a needle biopsy.  It turned out to be a fluid filled cyst.  The doctor drained it and it collapsed.  Soon however a second, even larger cyst developed in my right breast.  I didn't bother to go back for that one.  Later on, my Lyme doctor prescribed iodine pill, which made the large cyst go away.

My feet started to swell and hurt.  I kept having to buy larger and larger shoes to wear to work.  I must have spent at least a thousand on new shoes.  My usual size six had swelled to a size 8.  I finally had to buy some large, faux-fur lined boots to wear to work in the winter.  They provided some cushion as well as warmth.  I was now having extreme cold intolerance.  My hands and feet always felt like ice.  My core temperature had dropped to 96.7.  I just could not warm up.  The only time I felt comfortable was in a hot shower, which eased the painful joints and the cold feeling.  At one point my right foot swelled to the size of a small football.  I begged my doctor for a steroid shot.  It only helped for a while and allowed me to continue to work. At that point I was still seeing the arthritis doctor who was convinced that I had arthritis of some sort, even though I tested negative for that.  I wish now that I had never used steroids or prednesone.  I believe that it has delayed my recovery.  Later, I found some memory foam shoes by Sketchers, that really helped with the pain and discomfort of my feet.  I swear by them now.

After starting treatment with a Lyme disease doctor, I started to improve immediately.  The pain and swelling on my neck: gone.  The pain and swelling of my wrists and hands: gone.  My frozen shoulders. gone.  I have regained complete mobility in both shoulder joints.  The pain and lack of mobility in my broken elbow because of a fall: back to normal with full range of motion.  My knee joints are no longer painful, but continue to be swollen.  I have a swollen jaw on my left side.  I am not sure of the source of this swelling and I have not heard of this being a symptom of Lyme disease. I also still have a ringing in my ears.  I wonder if this is because of some of my medications.  I also have thinning hair, most likely due to a combination of the Lyme disease and due to the methotrexate that was mistakenly prescribed for arthritis.

I seem to have reached a plateau in my treatment where I am not getting worse or better.  I am just staying the same.  I am now throwing in some herbals and supplements to see if this brings any improvement.  I feel strong enough now to exercise.  I can't run yet, but I hope to someday.  I can rebound on a mini-tramp, use a rowing machine, do sit ups, lift small amounts of weights, and walk briskly.  I have never been a couch potato until Lyme disease hit me.  I think that I can finally start hitting the gym.

Friday, April 10, 2015

Herbals For Lyme Treatment

The sadly, many who have Lyme are denied treatment either by their doctor, their insurance company, or by lack of a Lyme literate doctor in their location.  Traveling alone to seek treatment in another state seems overwhelming to someone so sick with Lyme, as well as cost prohibitive.  If you are like me, I have to work everyday.  I can't just leave work for months to seek treatment.  I am one of the lucky ones who found a Lyme disease doctor in my town.

I have heard stories of people spending $50,000 going to Mayo Clinic or Cleveland Clinic for Lyme treatment, just to be told that they don't know what is wrong.  Others have been told that there is no such thing as chronic Lyme disease.  One would think that these two places would provide the very best care and diagnosis for Lyme disease.

I have been reading a lot of stories about herbals for Lyme.  This might be something to try if you cannot find a Lyme doctor.  There may be an herbalist or Chinese herbalist in your area who could help when conventional medicine cannot.

Some people claim that you can be cured by simply taking Olive Leaf extract.  Others claim that Serrapeptase will draw the bacteria out of tissues, bones, and organs.  Some claim that coconut oil has antibacterial properties that can kill Lyme.  Still others claim that Cat's Claw herbal will eliminate the bacteria. I have read that teasel root extract used as a tincture can cure Lyme in just 7 weeks.  One woman claims that her whole family was cured of Bartonella by taking cinnamon leaf oil from Sri Lanka.

I hope that some of these cures do work.  I would be especially leery of so-called over night cures.  It took a long time for your Lyme infection to progress to the tertiary stage, and it will take weeks, if not months to get well.

Some of the remedies that I have read about seem harmful, dangerous, or even deadly. Some recommend treatments that can cause deafness.  It is probably best to seek treatment from an herbalist, a doctor, or a pharmacist before trying these.  At the very least, do some research or ask others who have used these products and be aware of side effects.

Thursday, April 2, 2015

Will You Ever Get Better?

I am sure that many tertiary stage Lyme patients ask this question.  I know that I ask myself these questions almost every day: Will I ever get better?  Will I ever feel the same way that I did before Lyme disease?  Is this the new normal?  Once I stop treatment, will it come back?  Have my muscles, joints, nerves, and tendons become permanently damaged?

There seems to be no consensus among health care professionals as to whether this disease ever goes away completely.  Some doctors think that a cure is possible.  Others think that the bacteria can only be kept in check with lower numbers of bacteria being held at bay by a healthier immune system.

I have posted an article that addresses the debate as to whether or not someone could be cured of Lyme:

Wednesday, April 1, 2015

Could Bee Sting Therapy Offer A Cure?

Some people think that Lyme disease could be cured by bee sting therapy.  Bee stings are thought to help arthritis and multiple sclerosis patients ease debilitating symptoms.  The practice can be both dangerous and controversial.  Some patients of these diseases are so desperate for relief that they will try anything.  Some patients feel that they have nothing to loose.  Little research has been done to test the effectiveness of bee sting therapy.  Scientists and doctors are not sure exactly how the venom works to cause relief of symptoms of these diseases.  Since bee stings can cause shock for many people, it should be administered by a professional.

Below is a link to an incredible story of one patient who was eventually cured by bee sting therapy:

More about bee sting therapy:

Lyme Disease and Thyroid Disease

Many Lyme patients also suffer from hypothyroidism.  I happen to suffer from both of these conditions.  Some health care professionals think that there may be cause and effect relationship between Lyme and thyroid disease.  Further research needs to be done to confirm this theory.  Some patients have reported that when Lyme disease was cured, thyroid levels became normal.  Thyroid disease can have a variety of causes that could include Lyme disease.  It would be interesting if someone could complete a simple survey to see what percentage of Lyme patients also have thyroid issues.  Below is an article that touches on this theory:

Identification of Ticks

Many doctors will tell you that a tick has to be attached to your skin for three days in order to become infected with Lyme disease.  Not true!  You can become infected by any deer tick bite, regardless of the duration.  My advice is to see antibiotics immediately after a tick bite.  If you can safely remove the tick yourself, put the tick in an empty pill bottle or zip lock bag and have the tick tested for Lyme disease.

I am posting a link to an article that identifies the different types of ticks in North America.  It was interesting to note that homes can become infested with ticks.  Pets can be the source of these infestations when they spend time outdoors. This is something that I did not realize.  The article also says that people can even contract Lyme disease in large, urban areas such as New York City.  This article is definitely worth reading.  I thought that I knew everything there was to know about ticks, but I was wrong!

If you suspect that you have Lyme disease, use this handy check list below and consult a local Lyme Literate doctor.  Click the link below: