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Monday, March 30, 2015

Advances In Lyme Disease



Pennsylvania, a state with a high incidence of Lyme disease infection, is planning a conference on better ways to treat patients with this disease.  The conference is slated for April 10-11, 2015 and is for health care professionals who treat Lyme patients.

http://www.pennlive.com/midstate/index.ssf/2015/03/lyme_treatment_ticks.html

Here is a link to register for the conference:

http://www.ilads.org/lyme_programs/drexel/ilads-drexel-lyme-conference.php

Lyme Disease App For Your Phone

Take a bite out of Lyme Disease with a Lyme Disease App for your phone.

Lyme disease can be a lonely illness that seems like there is no end. It is not something that you can truely understand if you have not experienced it yourself.  There are several apps for your mobile devices that can help you navigate the ups and downs of a long-term illness like Lyme disease.  You can purchase these in the I Tunes Store.  If you are like most Lyme patients, you take help where you can get it.

A few to follow are:
  • ilog Lyme ($1.99)
  • Lyme Disease Plus (.99)
  • Understanding Lyme (.99)
  • Lyme Disease Tick Map (free)
  • Lyme Found (free)
  • Tickborne Diseases, CDC.  This app was designed for health care professionals to identify various tickborne illnesses, symptoms, and treatments.  Available in the Apple store for I Phone and Android. (free)
I did not write these, but you might find these useful as you are learning more about your own illness and how to heal.


Sunday, March 29, 2015

Reinfection: Can It Happen?

Something I have been wondering about since I found out that I do have Lyme disease:  Can I ever catch it a second time?  I would never want to go through this a second time.  I even wondered if I could contract it again while still being treated with antibiotics?

The answer, according to an article and study by the New England Journal of Medicine, is yes.  Many people do get reinfected.  Strains of Lyme can vary, so even if you have built up an immunity to one type of bacteria, you could potentially be reinfected.  Also, ticks can carry over ten different vectors in their bite.  ( The Center for Disease Control lists 13 separate tick born vectors!) You may be infected with a different type of bacteria that you have not previously been exposed to before.
Here is the link to the CDC list of tick born vectors:
http://www.cdc.gov/ticks/diseases/

I am afraid, at this point, to go hiking, camping, or biking because of the fear of reinfection.  It is almost as though I am suffering from Post Traumatic Stress Disorder because of this fear.  It is keeping me from enjoying the things that I used to love, even though I am feeling much better.

Even before I contracted Lyme, I was careful to always carry insect repellent in my car.  It seems even more important for me do this now that I have already contracted the disease and I know the risks of not doing so.  I urge others to do the same.

http://phys.org/news/2015-03-ecologist-tracks-tick-borne-diseases-usual.html


Below is a link to a pod cast and text article on the topic of reinfection that was published by NPR:

http://www.npr.org/blogs/health/2012/11/14/165115733/reinfection-with-lyme-disease-may-cause-chronic-symptoms

Friday, March 27, 2015

Spring Brings Increased Risk Of Lyme Disease


Spring is arriving, and with the warmer weather comes the risk of tick-born diseases such as Lyme disease. As individuals begin to spend more time camping, hiking, fishing, and hosting cookouts, they need to be aware of the hidden risks.  People who work outside are especially at risk.  Parents also need to take steps to educate  and protect their children against this insidious illness.  When spending time outdoors, people need to check themselves, their children, and family pets for ticks.  Although there is a vaccine for dogs that protects them from getting Lyme disease, no such vaccine is available for humans, so prevention is key.  

If you do discover an attached tick, seek medical attention immediately.  Although a small number of people do develop the bulls eye rash associated with Lyme disease, most do not. 
Getting tested and treated early in this disease will prevent it from progressing to the more serious form of the disease that mimics arthritis.  If left untreated, it can cause permanent damage and even become a chronic, life-long condition. 

Lyme Disease On The Rise

Lyme

Chronicles






Ohio officials have admitted that Lyme disease is on the rise throughout the state.  They are issuing warnings to health care providers to be on the lookout for patients exhibiting symptoms of Lyme disease because of the spread of ticks throughout several counties.
Below is a link to the article to copy and paste to your browser:

http://www.cleveland.com/healthfit/index.ssf/2015/03/blacklegged_ticks_lyme_disease_risk_feared_on_the_rise_in_ohio_this_year.html



Thursday, March 26, 2015

Inflammation and Lyme Disease

A pineapple coconut milk 
smoothie contains bromelain,
an anti-inflammatory enzyme


Lyme disease creates inflammation in the body.  The lymph system, tendons, muscles, synovial tissue, and bones can become chronically inflamed.  The problem is:  How to reverse this inflammation and stop it in its tracks?  Well, I have heard many theories on how to do this.  I have decided to list as many here as I could find.  I have tried some, but not all of these myself. Many of these have to do with food, supplements, or vitamins.

I have reduced pain and inflammation, but I am still struggling with my knee joints.  Perhaps this is because I still work and have to stand on my feet all day?  Well, here is a partial list.  I may add to this list later, as I find more ideas and actually see what works for me.  Again, I am not a medical professional.  I am not advocating any of these.  Everyone is different and their body may respond or react in a different way.  Inflammation is a body/mind thing.  It has physical, mental, and spiritual causes.

Relax with a warm soak in a tub with
 peroxide, Epsom salts, and baking soda.

Anti-Inflammation Checklist
  • avoid meat
  • avoid margarine (real, organic butter is best)
  • adopt a vegan or vegetarian diet
  • drink a glass of water with lemon every morning when waking up
  • drink coconut milk
  • practice oil pulling every day (swishing your teeth with coconut oils)
  • meticulously brush and floss your teeth 2-3 times a day.  Inflamed teeth and gums are linked to inflammation in other parts of your body, so don't neglect your teeth just because you are tired, in pain, and sick with Lyme disease.
  • take a tablespoon of coconut oil a day
  • turmeric spice or pills
  • use ginger root, ginger tea, or ginger powder
  • drink plenty of water
  • avoid sugar of any kind
  • avoid rice, wheat products, carbohydrates, all dairy
  • eat broccoli, kale, or spinach
  • cucumbers and pickles make a great snack food
  • avocados
  • eat celery, which is anti inflammatory and a diuretic (if you are retaining fluids)
  • eat pineapple, drink pineapple juice (contains bromelain)
  • eat blueberries, strawberries, cherries, raspberries
  • drink almond milk
  • drink soy milk
  • use extra virgin olive oil in cooking, salad dressings
  • include garlic in your diet or use garlic pills
  • include onions in your diet
  • eat a green salad every day
  • use organic, raw honey or Manuka honey for sweetening 
  • eat salmon or tuna once a week
  • eat beets or drink beet juice
  • eat organic, low fat yogurt
  • use essential oils such as lavender and frankincense (apply with a roller ball applicator to joints)
  • use a re bounder or mini trampoline for exercise
  • swim laps for exercise
  • yoga
  • lose weight by eating smaller portion
  • dine by candle light
  • buy yourself cut flowers for your kitchen or dining table or order a bouquet and have it delivered to your workplace
  • Get a houseplant 
  • dine al fresco, on your porch, patio, or linai
  • take fish oil, krill oil, or flax seed oil supplements
  • eat walnuts, almonds
  • listen to relaxing music
  • avoid stress or any kind
  • drink cherry juice
  • eat only organic food and beverages (no pesticides, herbicides, or antibiotics)
  • avoid high fructose corn syrup (in all of its forms)
  • take glutathione supplements
  • massage therapy
  • if you can't afford massage therapy, have a loved one give you a back rub or foot massage
  • elevate swollen joints
  • use ice packs and/or heating pads for swollen joints
  • pulsed electro magnetic field therapy
  • acupressure 
  • acupunture
  • relexology
  • bee sting therapy or Apitherapy by a professional (this has serious risks due to allergic reactions. I would be afraid to try this.)
  • capsicum (capsaicin) oils, lotion, pills, patches
  • vitamin D3
  • chlorella
  • sea kelp
  • magnesium supplements
  • high count, quality probiotics
  • no alcohol
  • tub soak in warm water with: Epsom salts, baking soda, peroxide, lavender oil 
  • take naps, get at least 8 hours of sleep
  • wear loose fitting clothing
  • memory foam shoes (I love Sketchers memory foam shoes)
  • spend some time relaxing with nature in a park, beach, garden, or greenhouse. Walk, if you can or just sit an breath in the fresh air, scents, and sounds.  Listening to the sounds of waves on Lake Michigan is one of the most relaxing sounds that I can think of.
  • wear sunblock, sunscreen, sunglasses with UV protection, and/or a large hat when in the sun. UV light can cause inflammation of the skin and damage cells
  • wear insect repellent to prevent further insect born infections when outdoors
  • get a white noise machine or nature sound CD or recording and listen to it daily
  • spend some time alone each day, even if it is only 15 minutes
  • spend 1/2 hour alone in order to unwind after work
  • let go of perfectionism
  • spend time with positive, happy people
  • avoid stress
  • find relaxation in a hobby such as flower arranging, scrap booking, art, gardening, knitting, etc.
  • read for pleasure
  • relax in a hot tub or sauna
  • celebrate every special event and accomplishment and improvement
  • make connections with friends and relatives who are supportive
  • take a vacation, or staycation if you can afford it
  • spend some time with grandchildren or children, if you find that relaxing or refreshing
  • spend time with your dog, cat, or horse, if you have one and find that relaxing
  • keep a diary or a blog
  • join a Lyme disease support group in your area or an online group
  • If you are having a severe herx reaction, use Alka-seltzer Gold to get it under control
  • I often use a tiny amount of children's liquid Benedryl in order to fall asleep faster at night.  Just a small amount works fine and avoids the morning grogginess of adult strength dose.
  • I plan to try "fasting" for 12 hours each day.  I read that a doctor in Germany has his patients fast in order to starve the microbes of any sugars.  So this will mean no food or juices, only water between 6:00 p.m. and 6:00 a.m.  The spirochetes will only have the antibiotics as "food" and take that into their cells.  Fasting is also a technique that many people have used to try to "reset" their immune systems.  It is worth a try...
An anti inflammation salad with mixed
greens, walnuts, strawberries, and yogurt.


Some Lyme patients have to take as many as 40 pills, including vitamins, supplements, and antibiotics.  This can be very hard on your stomach.  The last thing that you want to do, is cause more inflammation.  Whenever possible,  I try to find chewable, liquids, or powders that can be mixed with water instead of the pill forms of vitamins, supplements, and probiotics.  This is much easier on the stomach!

Sleep is a problem for many people with Lyme disease.  I have discovered that listening to a story podcast is the easiest and fastest way to fall asleep for me.  It actually helps me to sleep peacefully through the night without waking up.  I am not sure why this works!

Hopefully, if you try the ideas on this list, you will improve.  I plan to use these ideas for the rest of my life, even after the Lyme disease is long gone.  Pick and choose what works best for you to reduce the inflammation that comes with Lyme disease, and to prevent inflammation in the future.

Update:
I have used most of these ideas and I am finally getting better!  I have been in treatment since September.  It has taken seven months of hard work.  I think that I am 90% back to normal.  I still need to regain endurance, muscle tone, and flexibility.  I still have some mild knee swelling, facial swelling on the left side, and tinnitus.  I am off of the antibiotics and may be able to go off all prescription med in 2 more weeks.  This feels so great!


Saturday, March 14, 2015

Children and Lyme


Lyme disease was first discovered because of children.  In the 1970's, two mothers in Lyme, Connecticut noticed that their children and many other children in the area where they lived were contracting juvenile arthritis.  They consulted a doctor who did research into the cause of this disease cluster.  It was discovered that the deer ticks in that area were carrying a type of bacteria that cause Lyme disease.  The disease gets its name from Lyme, Connecticut where these children lived and contracted the disease.  Doctors now know that this disease has been around a long time and that it is not "new" to humans. And researchers now know that deer are not the only ones who carry this disease. Birds transport these same ticks faster and farther than deer.  The fact that this disease can imitate other illnesses led to many generations of people being misdiagnosed.

Thank God that these persistent mothers advocated for their children and the children of others in their community.  This led to the discovery of Lyme. These women have unwittingly saved countless people by doing so.  They are heroines of this story.

I can't help wonder though, why is the medical community so slow to recognize and adequately treat Lyme in other parts of the United States?  How many other children out there are suffering needlessly?  How many are misdiagnosed with arthritis or some other ailment?  I worry that some of my students who have headaches, hyperactivity, memory problems, muscle pain, or attention deficit actually have Lyme disease?

Parents are not being warned about the dangers of ticks.  If my son were a small child today, knowing what I know about ticks, I would think twice about letting him climb trees, go camping, hiking, or any outdoor activity.  He would have to wear a thick coat of bug spray, long pants, and a broad-brimmed hiking hat.

Many parents struggle to pay for Lyme disease testing and treatment for their children. Some health insurance plans do not pay for Lyme disease testing or long-term treatment.   There are places where parents can receive some financial assistance if they suspect that their child  is suffering from Lyme disease and related co-infections.  I am posting a link to a site that lists places where one can get such help:
http://www.childrenslymenetwork.org/resources/financial-assistance/

Another source for grants of financial assistance for children under 25 years old:
http://lymelightfoundation.org/grants/

A foundation in my home state that wants to help pay any expenses related to a serious illness, even if you have health insurance:
https://www.cicf.org/about-cicf/funds-and-foundations/family-funds/thomas-p-and-sondra-d-sheehan-charitable-foundation/
http://www.indystar.com/story/life/2015/12/26/giving-back/77789342/?from=global&sessionKey=&autologin=

Below is a link to a wonderful article written in 2012 about children and Lyme disease:
http://www.gordonmedical.com/unravelling-complex-chronic-illness/children-at-risk-for-lyme-
disease/

Teens with Lyme disease can go to a special blog just for them.  The teen years are already difficult enough, I can't imagine what it must be like to be going through both at the same time.  For help, advice, or just a chat with someone who understands, click the link below:

https://www.facebook.com/pages/Teens-with-Lyme-Disease/135437926564652

Symptoms in children can be very different from those in adults or teens.  This is especially true for those children that acquire the disease congenitally, or at birth.  Below is a link to a poster about the confusing symptoms of children with Lyme disease:

tps://www.facebook.com/622230391135807/photos/a.622233434468836.1073741828.622230391135807/1123828330976008/?type=1&theater

I love this infographic about children and Lyme:
http://www.childrenslymenetwork.org/children-lyme/children-lyme-disease-infographic/

School, sports, work, and play present different challenges for children with Lyme disease.  I've included a link to an article that addresses school children and Lyme disease:

http://www.allmov.org/school-presents-particular-obstacles-for-young-children-afflicted-with-lyme-borreliosis/


Toughing It Out



The song Brave by Sarah Bareilles had just come out and was frequently played on our local radio channel when I first began having the tertiary symptoms of Lyme disease.  That song quickly became my anthem.  I played it whenever I needed a boost of encouragement.  It takes a certain amount of bravery to go through something like this and I am not a brave person at all. In fact, as a child, I remember my father telling me to "tough it out" as he compared me to "pitiful Polly Pureheart."
Many days, I just want to give up the fight.  I'll admit to being a wimp, a sissy, and a Prima Donna. But, going through this disease has taught me something.  I have become more sensitive to the pain and suffering of others.

I think that what my father was trying to say was, it's time to get some adult coping skills.  Stop sulking around when things don't go your way, you don't feel well, or you can't solve a problem immediately.  My father wanted me to develop a thicker skin, toughen up a little, and be able to face some of the harsh realities of life.

Lyme disease is something that changes you.  It breaks you down.  It lingers like an everlasting flu.  It breaks you physically, mentally, and emotionally. This disease chips away at your personality and self-esteem and self-confidence.   You have to develop coping skills.  The things that used to be important, like having a clean, beautiful, and organized house are just not important anymore.  Wearing make up and caring about my appearance is less of a priority.  Just getting out of bed and making it through an other work day seems monumental.

Now that I am starting to get better, and feel less pain, I find myself wishing that I could live my life over.  I should have celebrated more often.  I should have smiled more.  I should have hugged my son and other people more.  I should have encouraged him more and made a bigger deal of his accomplishments.  From now on I plan to do that.

Saturday, March 7, 2015

It Gets Worse, It Gets Better



The doctor warned me, "You are going to feel worse before you get better."  I was willing to take that chance.  She told me that this may last 3-5 days.  It actually lasted about 4 weeks.  Finally, one day I woke up without as much morning pain and stiffness.  As the day wore on, I actually felt better.  Almost normal.  For some reason, the leg and knee swelling was still there.  I couldn't easily get up from a seated position.  If I have to kneel or sit on the floor,  I can't get up without assistance.  (No more yoga.) Other parts of my body are swollen, too.  I have reached a plateau in my treatment:  feeling better, but not back to normal yet.  Not making any further progress.  It seems as though I have excess fluid retention of some sort that my body cannot get rid of by itself.  Ugh!

Link to article about Lyme written by a doctor with this disease:

http://northcoastld.com/articles/sterngold-articles/