May is Lyme Disease Awareness Month Blog Post #7: Testing for Lyme Disease

Why is it so hard for doctors to determine if a patient has Lyme Disease?  

In a previous post I mentioned that most doctors are not educated in Lyme Disease and that is why it goes undiagnosed and misdiagnosed for many patients for years.  

  • Since it mimics over 300 other diseases and doctors are not educated in it they assume it’s something else.
  • Since the the list of symptoms are endless it gets misdiagnosed as something else.
  • Most doctors think it does not exist in California so they don’t even consider it a possibility here.  They are lead to believe it only exists on the East Coast in the USA.  And if you get your doctor to test for it they don’t understand the testing so most everyone gets false negatives.  So even if your test comes back negative IT DOES NOT MEAN YOU DO NOT HAVE LYME DISEASE. 
  • The tests are not 100%.
  • The CDC’s two-tier testing method is flawed.
  • Most people have never heard much about Lyme Disease.
  • Most people have never heard of Lyme Literate MD’s

So what are the tests to determine if you have Lyme Disease?

If you get a test done at your regular MD they are only testing for one strain of Borrelia Burgdorferi.  And they are testing for the antibodies of that bacteria.  So basically they are testing your blood to see if your immune system responded to an infection and is trying to fight it off.  

I got tested on September 15, 2015 for the antibody of Borelli Burgdoferi (ELISA test) from my primary care physician and it came back negative so of course I was told I did not have Lyme Disease.  But that was not true.  The doctors don’t know about Lyme Disease so they do one blood test and rule it out.  But to rule out Lyme Disease you need a clinical diagnosis and possibly Western Blot testing of Borrrelia and co-infections.  You can’t just test for ONE bacteria when most people can get more than one bacteria from a tick bite.  And your body can not fight off multiple infections at the same time.  So if you only test for one you are not getting accurate results.

So here is the basics on what testing is available?

ELISA  – Enzyme-Linked Immunosorbant Serum Assay

ELISA

Most doctors who are not educated in Lyme Disease will do the ELISA blood test.   And  if it’s negative they don’t do any other testing.  

Results from ElISA are as follows:

< = .90 is Negative

0.91 to 1.09 is Unequivocal 

>= 1.10 is Positive

My test result was < .90 so it’s assumed negative.  If it came back higher than 0.90 then a Western Blot test would have been done.  But it wasn’t and it was a year later when I went to a Lyme Literate MD that I had it done.  NOTE: 50% of the ELISA tests produce false negatives!

The Western Blot:

The Western Blot is testing different classes of antibodies IgM and IgG.  My understanding is that this test is more sensitive and may show positive results when the ELISA show up negative.  The IgM and IgG are Immunoglobulin type M and G. 

So if a patient has a lot of symptoms and possibly symptoms for a long time then the Western Blot should be done.  In fact, most people say you don’t even need blood tests since a clinical diagnosis for Lyme Disease can be made.  

However, I wanted proof that all my pain and other symptoms were caused by something.  Since I was told so many times I was making them up I wanted proof from a lab saying I was not making these up.  But getting a Lyme Diagnosis didn’t help since most most doctors still thought I was making these symptoms up.  Unfortunately, most insurances don’t cover the costs of these tests and they are very expensive.

The Western Blot still confuses me.  You get a report of the IgM and IgG antibodies and different bands that are either 

 –   Negative 

IND  – Indeterminate 

 +   Positive

Western Blot MEMeThe problem with the CDC is that they are conservative and say you must have 5 bands positive of Borellia Burgdorferi to have Lyme Disease.  Again, if you just stop at the ELISA then you really don’t know if you do or do not have Lyme Disease.  I can’t stress this enough.  You must see a Lyme Literate MD to rule out Lyme Disease.  Your primary care physicians and neurologists and other specialists at “TOP” medical facilities do not know how determine if someone has Lyme Disease.  These places will only do the ELISA test and stop there if it is negative.   

I did gets some positive bands and IND results for the IgM test for Borrelia Burgdorferi.  And I also tested positive for the co-infection Babesia.  So testing positive for Babesia, a co-infection basically means I have Lyme Disease.  


Both of these tests are flawed.  And depending on the lab used the protocols may be different.  And the CDC two-tiered testing is flawed.  So here are some links that can explain it much better than me.


What is PCR (Polymerase Chain Reaction) Tests and will there every be an accurate test?  Check out owndoc.com/PDF


My advice:  Go with your gut!  If you feel you didn’t get properly tested or the right diagnosis then go to a Lyme Literate MD.


Previous Post in this Series

May is Lyme Disease Awareness Month Blog Post #6 What are the Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

When I was first diagnosed with Lyme Disease this is what I found out:

  • Lyme Disease can be bacterial and viral infections that you get from tick bite.
  • Lyme Diseases testing is inaccurate .
  • You can pick up more than one infection from a tick.
  • Other infections you get are called co-infections.
  • Ticks can be so small that most people don’t know that they have been bit. Some are the size of a poppy seed
  • Lyme Disease is referring to the bacterial infection Borrelia Burgdorferi.
  • My test showed I was positive for the co-infection called Babesiosis or Babesia.
  • I tested negative for Lyme Disease but because I tested positive for a co-infeciton, I have Lyme Disease.  The blood tests are testing antibodies that my body produces to fight an infection.   My body can only fight off so many things at once so not all infections will pop up positive.
  • When the Babesia infection gets better or goes away my body will start to fight the other infections and Lyme Disease will test positive.
  • Lyme Disease has been around for hundreds of years and was named after the town Lyme Connecticut.
  • Willie Burgdorfer was the scientist trying to determine why the so many people in the town and multiple family members in Lyme Connecticut were getting sick.
  • Lyme Disease is misdiagnosed all the time.
  • Many diseases mimic Lyme Disease so people are misdiagnosed.
  • Lyme Disease and it’s co-infecitons can cause problems in every part of your body.
  • My chronic daily migraines I have had for almost 20 years are most likely from Lyme Disease.
  • I’m going to get sicker before I get better.
  • There is NO cure for Lyme Disease-your symptoms will hopefully go in remission.

So that is the list of what I learned when I was first diagnosed November 9, 2015.  Then I began researching and reading more and more about Lyme Disease and here is what I found out.

What is Lyme Disease from lymedisease.org “Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.” “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.”

History from the Bay Area Lyme Foundation “Ticks and Lyme disease have been around for thousands of years. In fact, a recent autopsy on a 5,300-year-old mummy indicated the presence of the bacteria which causes Lyme disease. A German physician, Alfred Buchwald, first described the chronic skin rash, or erythema migrans, of what is now known to be Lyme disease more than 130 years ago. However, Lyme disease was only recognized in the United States in the 1960s and 1970s. And the bacteria that causes it – Borrelia burgdorferi – wasn’t officially classified until 1981.”


Additionally I found out:

  • A tick is not the only way of contacting Lyme Disease
    • Ticks
    • Fleas
    • Spiders
    • Flies
    • Mosquitos
  • If you know you have been bit by a tick you are one of the lucky ones.
    • Early Lyme Disease  
    • Most people don’t get a rash but if you do take photos for the doctor.
    • Most people get are flu-like symptoms after they have been bit.
    • Testing early frequently produce false negatives.
  • If not caught early than it can lay dormant in your body for years or decades.
  • If not caught early it can cause permanent long-time health problems.
  • People die from Lyme Disease.
  • Most people with Lyme Disease have more than one infection.
  • Most people get many wrong diagnoses and spend years being sick before they see a LLMD.
  • Most people do not get better with antibiotics.
  • After laying dormant Lyme Disease will start to appear when you are going through a stressful or traumatic event in your life.
  • Lyme disease may be sexually transmitted.
  • Lyme Disease infections may be transmitted through donated blood.  The American Red Cross website specifically states that you are not eligible to donate blood if you have Babesiosis (which is a lyme co-infection)  Sadly, since misdiagnosis is so common most people don’t know they have it.  
  • Lyme Disease can be pass from mom to baby lymedisease.org
  • Our government denies that chronic Lyme Disease exists.
  • The politics around Lyme Disease are keeping patients sick.

It’s very overwhelming when you get diagnosed with Lyme Disease.  The more I read.  The less I know. It bothers me that the CDC denies chronic Lyme exists even thought there are over 700 studies proving that it does.  That 90% of treatments for Lyme Disease are not covered by insurance (thanks CDC).  And, when I mention that I have Lyme Disease to medical professionals they treat me even worse.  They ask me if I am under more stress and refer me to a psychiatrist because they think I make these symptoms up.

Believe me.  You can not make this SH** up! 

Prevention is the only cure!


Previous Post

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1  Lyme Disease Awareness Month

 

 

 

 

 

It’s not my fault I have Lyme Disease

It’s not!  It’s really not my fault!  I don’t even know how or when I got it.  But I feel like it is my fault because I have a disease that most doctors don’t believe exists.  It’s not my fault that doctors are uneducated in Chronic Lyme Disease or Post-Treatment Lyme Disease, Co-Infections and all the other things that come with it.  But it’s really not fair to treat someone so poorly because they have it.  I would be treated so much better if I had Cancer.  Lyme Disease is much worse than Cancer!  You are thinking,…NO SHE’S CRAZY!  But it’s true.  You CAN die from Lyme Disease.   Yes, that is true.  It’s a scary disease.  So let’s compare Breast Cancer to Lyme Disease.

American Cancer Society   – The American Cancer Society’s estimates for breast cancer in the United States for 2016 are:

  • About 246,660 new cases of invasive breast cancer will be diagnosed in women.
  • About 61,000 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 40,450 women will die from breast cancer.

In 2013 the CDC updated it’s statistics stating that they now estimate over 300,000 new cases of lyme disease each year.  And those are just the reported cases.  Unfortunately, due to the lack of education of medical doctors thousands and thousands of people are misdiagnosed.  Check out these links:

LymeDisease.org

CDC

Bay Area Lyme Foundation

The number of people that die from Lyme Disease is not clearly known because most cases of Lyme are misdiagnosed as something else like, Fibromyalgia, ALS, MS, RA, CFS, Alzheimers, Crohns, Psychiatric Disorders, any auto-immune disorder and numerous others diseases.  That’s why it’s called The Great Imitator”  Check out New York Times 1993,  Under Our Skin Article 2012,  and see Dr. Horowitz, MD  and many other books, books and more books.

If I had Cancer no one would even think that I was faking the crippling pain and nausea.  No one would ever questions that I wasn’t suffering.  No one would ever think I was making it all up.  No one would treat me like an addict just seeking drugs.  Seriously, think about it.  No one!  Not Doctors—Not Friends—Not Family—Not Co-Workers—No One!  Have you ever doubted anyone when they told you they had or have Cancer.  No, I didn’t think so.  Have you ever doubted anyone when they got sicker while doing chemo treatments.  No, I didn’t think so.  That’s why Lyme is worse.  There is NO support!  There is only inadequate medical care and uneducated and unsupportive doctors.

So here’s to all those medical professionals and others who think I have something else besides Lyme. Or think that Lyme is easily treated.  Or think I make up this pain.

  1. I have been to numerous doctors before seeing a Lyme Literate MD
  2. I have had doctors rule out other things you think I have.
  3. No, the lab that did my lyme testing is not fake.
  4. I have spent a year educating myself about Lyme Disease and I know a lot more about it than you do.
  5. My pain is real!  I had a life and a career before getting daily migraines 21 years ago.  It’s not my fault my body is on fire and no one has figured it out yet.
  6. I have tried many daily drugs to lessen my pain and they DO NOT WORK so I need pain meds.
  7. I look fine to you because I fake it!  I lie about how I am doing because most people really don’t care when they ask “How’s it going?”  or “How are you?”  We all know that is just a common meaningless gesture.
  8. I am not an addict seeking drugs.  I am crippled and can barely walk without pain meds.  I feel like a “Walker” because I run into walls in my house because I am so feeble and ready to collapse most of the time.
  9. Because Lyme comprises my immune system I have many other illnesses but I still have LYME!
  10. Most treatments are not covered my insurance because the CDC determines treatment courses and they believe one course of antibiotics is enough.  Lyme is not easily treated and cured.  It’s complicated!

As you can see the number of reported cases of Breast Cancer and Lyme Disease are around the same each year.  But remember many cases of Lyme are not reported because they are misdiagnosed.  Have you read about Kris Kristofferson?

Here’s an interesting article that explains some of the controversy of Chronic Lyme

 Here is another good article about the controversy of Chronic Lyme

So to those medical professionals who still don’t think I have Lyme Disease, what do you suggest I do?

  • Do you think I should start over and re-do tests that came back negative?
  • Do you think I should just pick a diagnosis that fits in your box?
  • What do you expect me to do when I receive negative test results for the things you think I have?
  • What do you expect me to do when the pain is real and I’m told it’s not and that I need psychiatric meds?
  • What do you expect me to do when I am crippled with pain and no one will help me?
  • What do I do when the only tests that come back positive are for infections called lyme disease and lyme disease co-infections.

Medical Professionals:

  • Please get educated!
  • Please stop treating me like a drug addict.
  • Please don’t rule out Lyme Disease as a diagnosis for other patients and send them to a LLMD.  Don’t do the testing yourself.  You don’t know what you are doing!

I wish everyone could spend ONE day in my shoes to develop some compassion.  You would also begin to understand what fatigue and pain really is and learn that most days I feel like I am going to die.  Because I can tell you you have NO CLUE!

 

Beautiful Song by Marina Morgan 

Read some of the Myths of Lyme Disease

Lyme is a huge epidemic and the denial by our government is killing people like me.

I have Lyme Disease Educational DVD’s I am happy to lend to anyone interested

 

 

 

 

Why I am Anti-Fibromyalgia

Don’t get me wrong.  I believe anyone that says they have pain.  I’m not only sympathetic to it I also understand it because I’ve had chronic pain for 21 years.  I’m just frustrated by a diagnosis of Fibromyalgia for myself or anyone else.  I didn’t accept it and neither should you.

This article discusses causes of Fibromyalgia, Chronic Fatigue Syndrome and other Auto-Immune Diseases.  There is also a good interview with the CEO of LymeDisease.org.  If you have been given any of these diagnoses it’s worth reading it and listening to the interview.

Is Fibromyalgia the Real Diagnosis? by Envita

#LymeDisease #Fibromyalgia #ChronicFatigueSyndrome #AutoImmuneDisease #CDCSUCKS

 

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