What do you do when your “fight” is gone??

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For the last 3 years I have been fighting…I have been in “the fight for mom’s life.”  Fighting has become what I do.  Its part of who I am.  It has become natural and fighting was just how we lived from day to day.  Fighting to get her better, fighting to make the doctors understand, fighting to help her, fighting to juggle everything, fighting insurance companies, fighting the Lyme Disease wars, fighting to get the antibiotics she needed, fighting to keep her with us…fighting, fighting, fighting.  I find myself feeling lost and missing that fight…It could be that I just don’t know what to do with myself now that I don’t have to fight anymore.

I continue to be bombarded by Lyme Disease.  I don’t think that is coincidental.  Am I called to the Lyme Disease fight for the rest of my life?  I don’t know exactly.  There are a lot of people suffering out there.  They have been tossed to and fro from one doctor to another without an accurate diagnosis.  They are spending tons of money on doctors and drugs that will not help them.  They are being treated for diseases that really stem from Lyme disease and it’s co-infections.   The treatment should target the Lyme first.  Education is lacking, doctors can’t do their jobs because of the bureaucracy and lack of knowledge, people are being told they’re crazy and that they aren’t really sick.  It’s just not right.  My mom was treated that way by many of her “trusted” doctors until we finally figured out ON OUR OWN (my research) what was wrong with her and found a few amazing doctors to help us.  But by that time I fear it was too late.  I know that if years ago my mom was tested for Lyme and came up positive, she would have had more of a fighting chance.  Lyme is at epidemic proportions – that sounds alarming and like I’m nutty, but it is true.  Google Lyme Wars,  Watch the movie “Under Our Skin”, Read the book “Cure Unknown” and you’ll see what I mean.

I still feel like I need to be an advocate for something or someone.  The knowledge I’ve gained can’t go to waste.  I know too much.  The key is that my energy has to be used in some way to honor my mom.  From my perspective eyes need to be opened, information needs to be given, minds need to be changed, and most of all, Lyme Disease needs to be taken seriously.  It is not a joke, it exists, it is hard to eradicate without aggressive treatment if not treated immediately after exposure.  Pray for me as I figure out where and who I need to give my “fight” to.

This is a letter I sent to my family when we finally figured out she had Lyme.  Hopefully it will serve someone out there. It’s long!

Dear Family,

I just wanted to email everyone and give you some information about Lyme disease. It’s hard to put it all into words when we talk over the phone. It is a very convoluted disease and I want everyone to understand what mom’s been dealing with for all these years…untreated. The problems she’s had including the Scleroderma have manifested due to untreated Chronic Lyme. Now she’s under the treatment of a good Lyme literate Md. We are so happy we finally figured this out! I also know that some are skeptical about this diagnosis and treatment. But, we are secure in this treatment and at this point, what does she have to lose?? Do some research on your own also. Let me know if you have any questions! Love you all!

http://sonyafightslyme.blogspot.com/201 … -talk.html

Saw this link and wanted to share it. Notice under “stages of Lyme”…
Chronic Lyme – III
-for one or more years – immune system breakdown and its consequences
-co-infections become important
-serologic tests less reliable (blood)
-treatment must be more aggressive and of longer duration
The sicker you are, the less reliable the tests; Lyme burrows deeper and is no longer easily detected in blood

http://www.truthaboutlymedisease.com/about.html

Good Video re: Lyme: You Tube has a lot of good videos on Lyme.
http://www.youtube.com/watch?v=vNtpty2WCo0

This is also good information regarding Lyme:

What is Lyme disease?
Lyme disease is caused by the spiral-shaped bacterium (or spirochete) Borrelia burgdorferi. It is the number one vector-borne illness in the U.S. Humans are infected with Lyme primarily through the bite of a blacklegged tick carrying the disease. Some of the many possible symptoms are fatigue, muscle weakness, joint pain and inability to concentrate (brain fog). Some patients will see the erythema migrans (or E.M.) skin rash that sometimes, but not always, looks like a bulls-eye. If the E.M. rash is present, it is a strong indicator of Lyme. But absence of the rash does not preclude Lyme, as many patients never see a rash at all. Lyme can affect every system in the body, due to the spirochetes’ ability to burrow deeply into tissue of the joints, heart, and nervous system.

According to the CDC, Lyme is diagnosed through a clinical diagnosis, meaning a thorough examination of the overall picture of how the patient presents—results of testing, symptoms, and possibility of exposure to infected ticks. Therefore a negative test result does not necessarily rule out Lyme. Because of the changeable nature of Borrelia, there are inherent problems with testing for presence of the spirochete, and results sometimes can show up as a false negative.
If caught soon, Lyme is usually easily treated with a few weeks of antibiotics. Unfortunately, many cases are not caught soon enough. Given time the spirochetes burrow deep into body tissue and become difficult to kill through antibiotics. Longer regimens of treatment will then be required.

What are the Lyme wars about?
The so-called “Lyme wars” are being fought over these critical issues: (1) testing for the disease, (2) diagnosis, (3) treatment, and (3) education for doctors in general about Lyme.

The Lyme wars go back a number of decades. It’s a complex war with complex arguments, but simplified it comes down to these two sides: Lyme-literate doctors—working in the trenches with very sick patients— who believe long-term antibiotic treatment for Lyme is often necessary, vs. doctors aligned with such powerful entities as the Centers for Disease Control (CDC) and the Infectious Diseases Society of America (IDSA) who insist that two to four weeks of antibiotics kills all Borrelia in the body, therefore eradicating the disease. The problem is, many patients remain sick after such treatment. This latter group of doctors contend that such patients, regardless of their continuing symptoms, no longer have Lyme. Instead they suffer from a post-Lyme treatment syndrome—some form of autoimmune disease as yet unknown and undefined. This “syndrome” should only be treated symptomatically, and not with antibiotics.

Unfortunately, Lyme patients caught in these medical wars often suffer from an ironic and heart-wrenching “double whammy.” Early detection of the disease—through proper testing and diagnosis—makes for much easier treatment—typically the two to four weeks of antibiotics recommended by the CDC. But many patients fail to be diagnosed early due to unreliable testing and doctors’ lack of understanding about the disease. These patients often go from doctor to doctor for months, even years, before they’re finally diagnosed with Lyme. But by then they’ll likely require antibiotic treatment for a much longer time than the CDC recommends. And many doctors will deny them that treatment.

Why is the standardized testing for Lyme not always reliable?
First, no test for Lyme is 100% reliable. Borrelia are a very wily foe. They can change their outer protein coat, making them invisible to the body’s immune system, and therefore invisible to tests (since tests look for antibodies to the spirochete).
The CDC criteria for administering and interpreting tests have been controversial since they were approved in 1994. First the CDC insists on a two-tier form of testing, starting with the ELISA test, then proceeding to the western blot only when the ELISA is positive. Unfortunately all too often a negative ELISA is a false negative because of the test’s poor sensitivity. (Although the CDC insists the test is sensitive.) So many patients are lost in this first stage.

Those who do test positive move on to the western blot, which looks for antibodies to Borrelia burgdorferi in the blood that reveal themselves in the form of stripes or “bands.” Each band refers to a certain type of antibody and is indicated on the test results by a given number. Even when the test for Lyme was first developed many doctors protested the inclusion and exclusion of certain bands. One of the biggest arguments was over band 31—an antibody to a protein on Borrelia’s outer surface called OspA that is exclusive to Lyme. Yet this band was not included as a positive indicator on the test, while other bands that were less important were included. In order to test positive for Lyme, a patient must see a certain number of the included bands indicate positive. Many patients fall short of that required number of positive bands, often due to the fact that Lyme-specific bands that should have been included as significant were not. Overall, as a result of these controversial criteria, patients can see “negative” false results as much as thirty to forty percent of the time.

To counteract the CDC’s ineffective criteria for testing, labs such as IGeneX (this is the lab we used) in Palo Alto, California and others have designed their own criteria that include the Lyme-specific bands that the CDC’s criteria do not. (IGeneX tests also search for more than one strain of Borrelia, while the most common test kit in other labs looks for only one strain—B31, the original strain found on Long Island.) Lyme-literate doctors often send blood to these types of labs. Meanwhile the CDC and medical community at large do not recognize results from such labs as legitimate.

What are the possible symptoms of Lyme?
The possible symptoms list is long. Since Lyme can attack any system in the body, each patient may present very differently. Here are some of the possible symptoms:
Persistent swollen glands
Sore throat
Fevers
Sore soles or “burning” feet
Joint pain or swelling
Back pain
Joint stiffness
Muscle pain or weakness
Muscle twitching
Mental confusion
Difficulty with concentration or memory
Difficulty with speaking or reading
Mood swings
irritability, depression, or panic attacks
Tremors or seizures
Headache
Light or sound sensitivity
Blurred vision
Ear hum or loss of hearing Vertigo or poor balance
Lightheadedness
Dire need to sit or lie down
Tingling, numbness, or burning
Facial paralysis-Bell’s Palsy
Dental pain
Neck pain
Extreme fatigue
Trouble sleeping
Excessive need to sleep
Unexplained change in weight
Bladder dysfunction
Stomach problems
Heart palpitations
Sore chest wall
Breathlessness
Night sweats
Symptom flares every four weeks

For a complete list of possible symptoms, see this in depth medical abstract by Dr. Joseph Burrascano. The list begins on page 9.

In what states does Lyme disease occur?
According to the CDC Lyme has been verified in all fifty states. Some states have a much higher number of cases than others. These include Connecticut, Delaware, Louisiana, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, and Wisconsin. California also has a significant number of cases.
However, these numbers are low. There’s no doubt that many cases of Lyme go unconfirmed. This is due to such issues as undiagnosed patients; doctors’ failure to report cases; and the stringent, narrowly-focused requirements the CDC insists upon in order to deem a patient sick with Lyme.

Why do Lyme patients need a Lyme literate doctor, and how do they find one?
Sadly, doctors across the country have been misinformed about Lyme. Old myths still circulate. Some of these are: (1) A patient has to have the E.M. rash to have Lyme, (2) A patient must show a positive test result, (3) A patient must live in a state known to have higher cases of Lyme. Regarding point #3, there have been cases of patients with obvious Lyme symptoms and even positive test results who were told they couldn’t have Lyme because it “doesn’t exist in this state.” Other times doctors refuse to test for Lyme at all, citing the “fact” that it doesn’t occur in the area.

The lack of understanding about Lyme leads to that “double whammy” discussed above. First, Lyme patients are often denied a diagnosis because of ineffective testing and poorly educated doctors. Then, when they get worse as a result, they’re denied the treatment needed to halt the disease.

Often patients don’t just go undiagnosed—they are misdiagnosed with such illnesses as Chronic Fatigue Syndrome, Fibromyalgia, Crohn’s, Scleroderma, Multiple Sclerosis, Parkinson’s, Rheumatoid Arthritis, even Lou Gehrig’s disease. Either that or the patient’s symptoms are just “all in their head.” (Which some doctors have been known to claim.) The problem with misdiagnosis isn’t just the lack of right treatment, but the introduction of wrong treatment. For example, CFS patients are often given steroids to combat their swollen, painful joints. But steroids suppress the immune system and therefore are never given when a doctor knows a patient has an active infection of any kind. Bacteria are left to thrive in an immune-suppressed body. The Lyme patient invariably gets worse.

Lyme literate doctors—those who have really studied the disease and work with very sick patients on a daily basis—are all too few in number, but they can be found across the country. These doctors use more reliable testing and will treat with long term antibiotics, if they deem that is required. If you think you have Lyme, finding a Lyme literate doctor is critical.

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4 responses »

  1. Dear Michelle,
    I am so sorry to hear about your mom. I lost my own mom at a young age, too–she was only 48. It’s so hard, I think, no matter how old you or your mother was when you lose your mom–she’s still your mommy and you still feel orphaned no matter what. Please know I will keep you and your family in my prayers.
    Tonight is the first time I’ve come across your blog. I was looking up information about Lyme Disease. I was officially diagnosed about 5 weeks ago. I also went at least 10 years without a diagnosis and eventually figured it out myself. Your letter will definitely be of help to me when I gather the courage to share everything with my friends and family. Thank you for posting it.
    It is such an insidious disease. It killed two of my kids and my two toddlers who survived to birth probably both have it (one for sure) and my husband got it from me, too. Yet they still cover up how it can be passed from mother to child or wife to husband. I went to the doctor’s twice when I had the flu symptoms (stage 2) and they never even checked me for Lyme much less attempted to treat me with anything other than IV fluids because I was so dehydrated from throwing up. I never had the bulls eye rash. I saw over 20 doctors at least over the next ten years before developing multiple food allergies and reading about a possible link to Lyme Disease and putting the final puzzle pieces together. I feel very alone and desperate. I do think you can still help other Lyme Disease patients because we need all the advocates we can get. Your mom’s story should be told. People need to know the truth. I’m sick of hearing about how Lyme doesn’t kill people. That is baloney. If that were true, then AIDS doesn’t kill anyone either. It’s not the Lyme directly, its what Lyme does to you that kills you.
    I feel confident that your mom and my mom are praying for Chronic Lyme Disease patients from where they are. We must have more and more prayers reaching Heaven every day. Something has got to give. This can’t go on forever. At some point in time, most of the country’s doctors will have contracted it and they will find it harder and harder to deny its existence.
    Thank you again for sharing your story. Again, I will keep your mom and you in our prayers. God bless!

    • Thank you so much for commenting. Words can’t tell you how much I am just so touched by what you wrote. I am so sorry you are going through this trial. YES, somethings got to give. I appreciate your prayers for us and I will in turn pray for you! God Bless you and yours. Keep in touch. I want to know how you are doing and how your family is doing! Prayers for all!

  2. I will keep in touch and I will keep checking your blog for updates to see how you are doing as well. Being newly diagnosed and having no local support group, I am completely overwhelmed right now with where to go and what to do. We have had to find a new LLMD because the doctor who diagnosed us doesn’t want to treat young children (“too risky”) and has not yet been able to adequately treat her own case of Lyme. She’s kind of new at this, too–she didn’t believe in Chronic Lyme or aggressive antibiotic treatment until her initial infection was under-treated and she developed Chronic Lyme herself. We haven’t seen the new LLMD yet and I had to stop my antibiotic treatment because he wants to do a different Lyme test (Igenex) and I can’t be on antibiotics for it and after stopping the antibiotics I was on, I have become utterly exhausted–even more so than before the treatment, strangely. He also is a 10 hour round trip commute–but I really prayed about which doctor to go see and there were certain indicators about him so I am relying on God to help me with traveling so far (seeing as how sometimes a walk to the neighborhood playground is exhausting). I am Catholic too and am invoking lots of saints to pray for us:)

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