May 30, 2015

Testing for Lyme Disease

Lyme disease may be one of the most overlooked and misdiagnosed diseases of our time.  There are so many reasons for this it may make your head swim.

To begin with, the bacteria that causes Lyme disease produce such a multitude of symptoms which mimic a very long list of other diseases & disorders.  Check out this symptoms list.  

This can cause your doctor to run the rabbit trail and you the patient running from doctor to doctor.

If you think you may have Lyme and especially if you have late stage Lyme the costs for testing & treating it can be so exorbitant it typically throws one into a state of denial or an immense amount of debt.

To make matters even more complicated the standard testing and diagnostics are completely unreliable.

While these issues are a huge part of the problem, I believe the bigger reason this disease remains so obscure is because there are two greatly opposing opinions regarding Lyme disease in the medical world which essentially confuses the patient and many doctors alike.

Two Sides of Lyme

When you begin to research Lyme disease you will find conflicting information. 

One standard protocol is from the IDSA (Infectious Diseases Society of America) and the 2nd from ILADS (International Lyme and Associated Diseases Society).

IDSA and ILADS guidelines both stress that tick-borne diseases need to be determined through clinical judgment however, the CDC puts even greater restrictions on what that means.

The IDSA does not support the fact that Lyme can become a chronic disease so doctors are not trained to look for or even suspect Lyme or the many co-infections involved in tick-borne infections.  

Many will completely dismiss their patients' concerns even when that patient requests the doctor explore further.

Some doctors are willing to write a prescription for an acute infection but they are not giving high enough doses or for the length of time needed to completely cure the disease while it's in the early stages.

Two Tier Testing

The IDSA restricts the diagnosis of Lyme based on the CDC's criteria requiring two-tier testing using the ELISA and Western Blot blood tests. 

The CDC's website states: "This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."  

Despite this they will not recognize a Lyme infection unless it has passed the two-tier testing.  Scientific literature proves that this testing is highly unreliable.

The Western Blot

The ELISA & Western Blot tests for antibodies rather than the organisms themselves.

The Western Blot tests for two sets of antibodies; the IgM which tests for early antibodies and are produced within the first 4 weeks of an exposure to a disease, and the IgG which tests for antibodies that refer to a later response to the infection.

The CDC Western Blot IgG antibodies are 18, 23, 28, 30, 39, 41, 45, 58, 66, 93 kDa.  They require 5 of these bands be positive out of the 10 tested.  However they are not testing for some of the Lyme specific IgG antibodies.  Lyme specific antibodies are 23, 31, 34, 39, 83-93 kDa.  Notice bands 31, 34, and 83-92 are missed.

The IgM Western Blot tests for bands 23 kDa, 39 kDa, 41 kDa and two out of the three are required for a positive IgM test.

Testing acute (or early) Lyme is unreliable because the body doesn't make enough detectable antibodies until after 4 weeks.  By this time, without treatment, you have most assuredly become chronic.

Keep in mind that many people don't get early symptoms from their tick bite.  

Symptoms can slowly appear over the course of weeks, months or even years.  

Many people don't even see a tick so any symptoms they do get they may not recognize as being caused by Lyme.

Testing chronic or late stage Lyme also poses problems in that antibodies tend to decline over time.  The body's immunities are also compromised from the disease and therefore antibodies are not always present, resulting in a false negative test.


ILADS Physicians

Thankfully, ILADS physicians do not rely on testing alone, however if you have a positive test they will most definitely accept it.  

During your evaluation with an ILADS physician, you will be given a medical history questionnaire which will probe issues concerning your health, symptoms and lifestyle as well as potential exposure to the ticks that transmit the disease.   

Recent Lyme studies are showing that Lyme can be spread through vectors other then deer tick.


This questionnaire is specific to the many symptoms of Lyme disease as well as co-infections.

ILADS physicians will review any labs you have had done.  They will most likely order tests through a specialized lab if you have symptoms without a positive Western Blot. 

These physicians recognize that if a patient tests positive to any one of the Lyme specific bands on their antibody test, they are indeed positive especially if they have a history of tick bite or a lifestyle conducive to contracting the disease.

Keep in mind that only about 40% percent of infected patients ever recall having been bitten by a tick.


Labs

While it is possible to get a positive antibody test through a regular lab there are specialty labs where testing is more sensitive and therefore more accurate.  IGeneX, Stony Brook and MDL are three.

There are at least 5 subspecies of Borrelia burgdorferi, over 100 different strains of Borrelia in the United States and 300 around the world.  Most standard labs are only testing for one.

Specialty labs also offer different types of testing such as urine and PCR as well as testing for co-infections.  Many are offering testing the ticks themselves.

My family and I have been tested through standard labs as well as specialty labs.  

We were also recently tested by our newest doctor using Auricular Testing methods and are now using homeopathic remedies to regain our health after years of antibiotics and anti-malarials.

While antibiotics are very effective with an acute infection if given at high enough doses and for a long enough duration, it isn't always wise to choose antibiotic therapy for a chronic infection.

Treatment can take years and cause side effects as well as other health issues so each person must decide for themselves along with the advice of an experienced physician.

Antibiotics and anti-malarials have most certainly helped me regain much of my health from Lyme and co-infections but at the same time they compromised other aspects of my health.  

I also found that every time I weaned off my medications I would relapse, making me dependent upon them.


What To Do

Finding a knowledgeable physician is the wisest first step.  Most of the time word of mouth is the best way.  You can also check for Lyme Literate doctors through the links on my front page.

Remember that Lyme is not the only disease you will contract when you are bitten by a tick.  There are many co-infections to consider and sometimes you could get a co-infection and not Lyme. 

You'll need to also consider the existing health issues you may already have.  These things can make healing impossible without proper treatment.

A Lyme infection causes inflammation and will also set off an immune response which can cause many other problems and can affect virtually any system in your body.  Your health can become even more compromised the longer you carry the infection.

Dr. Richard I. Horowitz, an ILADS MD has put together a questionnaire that could help you determine whether or not you should pursue Lyme testing.  You can find that here Horowitz Lyme-MSIDS Questionnaire

For more information about labs see below:
IGeneX  800-832-3200

To explore a more natural approach to testing and healing please see the link for the doctor we have found to be so helpful. Alternative Medicine Center

I hope this is informative and helpful.  By educating yourself you will be able to get a proper diagnosis and treatment if you suspect that you or a loved one has Lyme disease.



May 25, 2015

"Don't Forget About Me"

This poem is dedicated to my beautiful daughter who has watched the world go on while she lies in bed too fatigued to go about her 20 year old life.

I'm definitely not a poet but as my Momma heart grieves for this child, these words flowed from me this morning and I thought I'd share this for her and anyone else stuck behind.




May 22, 2015

Lyme Links & Resources


For your convenience I've put together a Links & Resources list so that you can easily find the information needed regarding Lyme Disease.

This list of links and resources is under construction. I will be adding to it so be sure to bookmark the page and check back often.  Thank you for your patience.


Click on any of the links below and you'll be taken to these wonderful informational websites. These websites can help to educate you so that you'll be able to get the diagnosis, testing or treatment that you need.  

Tick-borne Diseases Questionaire

If you suspect that you or a loved one has Lyme, start here with Dr. Richard Horowitz's Questionaire


Lyme Websites

ILADS Treatment Guidelines
ILADS, International Lyme and Associated Diseases Society
You Can Get Better, Dr. Horowitz
Lyme Disease Association
Lyme Disease.Org
Lyme Prevention

The Importance of Proper Treatment
Lyme Disease, What It Is and Why You Should Care

Tick Identification

Lyme Disease Protection


Lyme Disease Misdiagnosis

Misdiagnosing Lyme Disease

Lyme Disease and Children

Children's Lyme Disease Network
Kids And Lyme Disease, How It Affects Their Learning
Lyme Disease.org  Pediatric Tick-borne Disease Specialists
LymeNet Neurological Neurological Manifestations of Lyme Disease in Children
Lyme Disease Association Tick-Borne Disease in Children and Adolescents 
Gordon Medical Associates  Children At Risk for Lyme Disease
IGENIX.com  The Psychological Effects of Lyme Disease
Psychology Today  Lyme Disease: The Great Imitator, Pamela Weintraub


PANS & PANDAS

Lyme Disease & Neuropsychiatic Symptoms

Neuropsychiatric Presentations of Lyme Disease
High Anxiety (Neurological Lyme Disease Part Three)
Neuropsychiatric Lyme Disease-Dr. Suruchi Chandra


Lyme Disease and Pregnancy

Lyme Disease And Pregnancy
Mothers May Pass Lyme Disease To Children In The Womb
Symptoms of Lyme Disease In Babies

Lyme Diagnosis


Lyme Testing

Lyme Research Alliance - Lyme Testing Information
IGENIX
STONYBROOK
MEDICAL DIAGNOSTICS LAB


Tick Testing

Igenix Tick Tests
TickReport Tick Testing
Clongen Labs
Stony Brook Lyme Disease Testing

Treating Lyme with Herbs

Buhner's Healing Lyme website

Alternative Treatment for Lyme


Co-infections

The Role of Co-infections, Daniel Cameron, MD
Treatment of Lyme and Associated Tickborne Diseases, Dr. Richard Horowitz

Other Helps


Reading List

Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease, Dr. Richard Horowitz
The Lyme Disease Solution, Dr. Kenneth B. Singleton
Healing Lyme, Natural Healing and Prevention of Lyme Borrelliosis and It's Co-infections, Stephen Buhner
The Top 10 Lyme Disease Treatments, Bryan Rosner
Cure Unknown, Inside the Lyme Epidemic, Pamela Weintraub
Book: The Anti Anxiety Food Solution by Trudy Scott

Documentaries & Educational Seminars

Under Our Skin, Andy Abrahams Wilson
Videos by Dr. Horowitz - You Can Get Better
How Lyme Disease and Its Treatments Work, Envita

May 19, 2015

I Did It! I Conquered My Fear In 164 Steps

Enjoying nature and going into the woods may not be a big deal for most of you but for me it scares the living daylights out of me! No kidding!

I didn't used to be this way, I love nature and grew up camping, hiking and doing many adventurous things.  I just shared where my fears came from in my previous post, "Facing My Fears In The Wilderness".

I decided today was as good a time as any to face this fear head on and stop lurking at the deep green woods like a monster was going to jump out.  

You should have seen the expressions on my family's faces when I told them I wanted to go with them down to the river today. It was priceless.

As I headed toward the steep 164 step staircase, leading down into the woods, and to the river, I definitely had some apprehension but I was determined to do this and not let my fear of Lyme Disease or any other disease or bug stop me.

I'm not afraid of the river, it's beautiful and peaceful but powerful and glorious at the same time. My fear is of going anywhere ticks may live waiting to bite me or my family.

You know what? I realized today that I hate bugs and spiders too!

I've lived for 8 long years completely avoiding wooded areas and have even declined invitations to parties which were in wooded areas. I truly am sorry if you were the host of one of those parties.  I know it's hard to understand but my fears are real.

We've lived for 8 long years with the chronic pain of Lyme Disease, Bartonella, Babesia and Mycoplasma. Unless you've experienced it, I'm not sure you'd understand why I would never want to get another tick infection again.

Up there on the scale of chronic pain, fear is horrible too. It can cripple you, it can make you think irrational thoughts and it can definitely keep you from enjoying time with friends and family.

So here we are on a family vacation and everyone is having such a good time while I hang back and read and keep the house clean. Doesn't sound like much fun and it wasn't. It's not fun missing out on what my kids are doing and seeing.  I wanted to be a part of that.

So, today, I conquered this fear 1 step at a time, 164 steps down and 164 steps back up.  Yay me!

Here I go........




I can do this!  I know I can.

EEEk, there are way too many bugs down here and you should've seen the ginormous spider.


I Made It !!!


It sure is beautiful here at the river and I'm so glad I came to spend time with my family.






I made it down and back and I conquered one of my biggest fears!  I'm not sure I'll be doing that again any time soon but I do feel good about it!

I can't promise you that I'll go to your party in the woods or take you up on an invitation to go hiking any time soon but I'm getting there and I really appreciate your patience.


This is my favorite way to enjoy nature, out on the deck with iced tea and a good book, after I kicked the spider off my chair.

Enough with the selfies now!  Thanks for joining me on my big vacation adventure.


May 17, 2015

Facing My Fears In The Wilderness

We all have fears to one extreme or another.  Most of us tend to avoid the things we're afraid of and that's exactly what I've done for many years. Honestly, I didn't actually choose to face one of my biggest fears this week, but I knew it had to happen some time.

Since contracting Lyme disease and other tick-borne infections I've been afraid.  Everyone who knows me knows that I'm terribly afraid of going into the woods.  I'm afraid of going to people's homes which are surrounded by woods, who live on farms or even areas where deer may roam which by the way is practically everyone I know.

I find myself holding my breath when driving through shady, wooded areas.  I don't do it on purpose, it's just how my fear sometimes manifests. My heart rate starts increasing and I begin to have a mini panic attack.

WHEN I AM AFRAID I WILL TRUST IN YOU Psalm 56:3

Ok, so I'm not actually in the wilderness but I sure feel like it.  


May 8, 2015

Am I Really Failing At Motherhood?

Mother's Day is this weekend, have you noticed how we're bombarded with advertisements and tear jerking commercials of what always appears to me "the perfect Mom" with her loving children who shower her with expensive gifts and sappy cards.

I don't know about you but this doesn't do a whole lot for my confidence level as a Mom. 
Even Facebook and my favorite blogs can sometimes make me feel like I'm failing at Motherhood.

May 6, 2015

I'd Like to Forget About Lyme Disease

I almost forgot I had Lyme Disease, really I did.  I know, I know, if you've ever suffered with the pain of chronic Lyme you're probably wondering how that could happen.

My family and I have suffered with Chronic Lyme Disease for at least 8 years that I know of.  I'm not really sure because some of those mysterious symptoms from long ago could have been Lyme but I really have no way of knowing.

After several very long years of intense illness, pain and medication I finally had a period of time where I felt normal.  I didn't have pain, I wasn't fatigued, I didn't have brain fog and I felt great.  I was so happy I could be busy again and clean my house.  It's the little things you know.

I was being treated for Babesia during this time.  I picked up a part-time job to help cover some medical expenses and I continued to homeschool and do all of the other Mom things I had been doing.  I felt great.


May 2, 2015

Do You Think I Make a Big Deal About Lyme?

Do you think I make too big a deal about Lyme Disease?


When an illness overtakes your body and causes more pain than you've ever had in your life.

When it takes your memories from you or prevents you from being able to understand simple things, when every step you take feels like you're trudging through mud with stabbing pains in your feet and legs.  When you're so exhausted but can't sleep.  When your joints throb and you feel like every bone in your body is broken.

May 1, 2015

Antibiotics for Lyme and What We're Doing Now


When I was diagnosed 6 years ago I knew nothing about Lyme Disease except that it was something you might get from a tick.  Before Lyme I had never bothered to learn about it because quite honestly it didn't affect me.

I suddenly found myself at the mercy of my doctor.  I willingly followed her prescribed treatment because I was way too sick to understand what I was dealing with or how to help myself.  I had always been against taking antibiotics unless I absolutely had to but here I found myself with 3 different types of antibiotics all at high doses all at the same time.