Tag Archives: Lyme Disease

1 year

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“When she shall die,
Take her and cut her out in little stars,
And she will make the face of heaven so fine
That all the world will be in love with night
And pay no worship to the garish sun.”  Shakespeare

“Perhaps they are not stars in the sky, but rather openings where our loved ones shine down and let us know they are happy.”  Eskimo Proverb

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear;and whatever is done
by only me is your doing, my darling)  – – e.e.cummings

“There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than ten thousand tongues.  They are messengers of overwhelming grief…and of unspeakable love.” ~Washington Irving

“There are no goodbyes for us.  Wherever you are, you will always be in our hearts.” ~Mahatma Ghandi

I love and miss you mommy!!

Walk for Lupus NOW – April 28, 2012

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Well, I’ve got the running/walking bug.  I did my first 5k on Saturday for the Georgia SPCA – Run for the Rescues.  It was a blast!  I had a lot of fun and also observed what was needed to do a 5k and family fun run in memory of my mom for the Georgia Lyme Disease Association.  I am in contact with them to begin coordinating the 5k for Mother’s Day 2013.  I am very excited at the possibility of this family day in honor of my mom!

In the meantime, I’ve decided to raise funds and do a walk for Lupus.  Even though my mom did not have Lupus, it was one of the many diagnosis that were thrown out for her.  It is another one of those “auto-immune” diseases that puts your body into attack itself mode.  Personally I don’t think your body just turns on you that way.  There has to be a root cause.  Hopefully the money raised in this walk will help research, promote awareness and give help to those in Georgia who suffer from this nasty disease.

If your heart tells you to…please visit my website and donate.  $5, $10, $20 – it does not matter.  Any and all donations are so needed and appreciated!  My goal is $500 but wouldn’t it be sweet to double that??  Also, if you would like to join our team and walk with us, please do!  The more the merrier and the more the more money for Lupus!  Thanks in advance!  xxoo

DONATE HERE!

The Belt of Orion

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I considered not writing anything at all today. It takes a lot out of me. It is terribly painful to be transparent and real with you. This type of entry takes me days to write. I can’t do it all at once, I get too emotional. It’s something I have to do little by little, a few words here and there. Walk away, regroup, get it together, come back, write some more. It takes a toll. Re-reading, editing, deleting, pondering, adding and crying. Frankly it would have been much easier to remember this 6 month anniversary in complete silence. When it comes right down to it though, I can’t do that. It would be very uncharacteristic of me to let it pass without somehow marking the day by writing something…anything. And I really don’t have a choice in the matter anyhow. My thoughts begin writing themselves without my permission in my mind and if I don’t put the words down, I feel like my brain will explode.

Will this be something profound and meaningful? Probably not. Something inspirational and eloquent? No…not likely. Something from a heart that is still broken, raw and empty? Most definitely. Something from 6 months worth of mourning, change, adjustments and grief? Yes. Something from a daughter who misses her mom and would give anything and everything to have her back? Absolutely.

It took 4 months not to feel like a zombie. 4 and a half months to not sob every day. It took 5 months to start to feel like myself again. 5 months to feel like I wasn’t stuck in a bad dream. 5 months for the brain fog to finally lift. 5 and a half months to really feel like it was going to be OK again. 5 and a half months to get my appetite back and not to feel guilty about feeling good or having fun. I honestly felt like I was supposed to be sad or I’d be betraying or forgetting my mother. But, she would not have wanted that. My mom did not do that when my Grandma died. So I can’t do that either.

Now at 6 months, I can have two or three good days in a row. Then…BAM! Something out of the blue throws me over the edge…

Looking up at the sky and seeing our mom’s “3 stars.” You know the 3 stars that are in a perfectly straight line going up and down? Orion’s Belt. She always said that those stars were her stars because they represented her kids.  She’d look up at them all the time.

Finding a gorgeous picture of her on Valentine’s Day that had a Calla Lilly in it from before she got sick. She was healthy, radiant and happy. She had an amazing smile. Her skin was lily white and she had some weight on her. It was her gift of love to me on Valentine’s.

Receiving a text from my Aunt Leigh that said “Rachel just came in to talk to me and I noticed something on the inside of her wrist. I asked what it was and she showed me a heart with AK inside. I asked what that was. And she said it was for Aunt Kathy. She felt her with her today and wants her to be with her tomorrow. Totally started crying. ” Rachel had just competed in day 1 of the Georgia State Swimming Championships. There was an elephant in the Georgia Tech Aquatic Center that day. It was my missing mom.

Reading Facebook status updates by my dad or my brothers that are about my mom. They just completely wreck me.

Losing the Brown Scapular that was on her pillow right beside her head when she died. I wear it every day tucked in my bra. I panicked, I sobbed, I prayed, I pleaded and I found it because she whispered in my ear to look “here.” More sobbing from relief and joy.  I simply could not bear to lose that.

Having to move from the home we shared – our dream house, our porch, our beautiful neighborhood. It was like her dying all over again. Leaving that house without her was a very bad day.

Creating a “tribute” wall to her in the new house. The ideas would come to me and I would just cry and cry setting it up. It turned out beautiful. Grandma’s shelf, Grandma’s mahogany table, her tea cup, the cross stitch pictures that Aunt Mary Ann gave her, her Lladro Nurse holding the baby, our family picture, a candle…a rosary.

I often wonder what she’d think of the new house, would she like it? Would she be proud of me? I hear her voice telling me what to do, how to decorate, how to set things up. She had a good eye. I recently had her wedding portrait matted and framed.  It is a thing of beauty.

I get my sentimentality from her. Everything in this house means something. Everything stands for something. Everything is a memory. Everything reminds me of her. I keep those memories very close. They make me sad and then they ultimately comfort me after these long (or short) 6 months. Miss and love you more than you can imagine mom! Time is healing but time will never erase you from every fiber of my being.

3 Months

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Today marks the three month anniversary of my mom’s death.  I know without a doubt that she would not want me thinking these things and for the most part, I do not think of them all the time but I wanted to “get them out” and express what goes through my mind.  I think they are questions that come up naturally and part of the grieving process.

THE WHAT IFS…

What if you had stayed home that day?  You woke up late and said you were fine and just wanted to go in late.  Were you really feeling sick?

What if I had been there with you at dialysis?

What if we didn’t take the meds and ventilator off?

What if we gave you more time to come back to us?

What if the neurologist was wrong?

What if we had paid more attention to your heart and not just your lungs and kidneys?

What if the two times we had you in the Emergency Room prior to your death they would have done a complete heart work-up?

What if we would have explored a kidney transplant?  Would you have survived that?

QUESTIONS THAT KEEP ME UP AT NIGHT

Mom, were you in any pain?

Did you try to get someone’s attention after you asked for the oxygen?  Did they ignore you for too long?  Did they hurt you when they put you on the floor and did CPR?  You were so frail.  Did they do what they should have done while waiting for the paramedics?  Did this happen to you because of the dialysis or because of the Lyme/Scleroderma?

Did your brain really “die” that Friday?

Could you hear and see us all around you?  Did you know anything at all?  Could you smell the gardenia?

Were you scared?

When they shocked you all those times, did you feel anything?  Did you suffer?

Did you try to communicate to me with your eyes?  I could swear you did.  I felt it.  Were you telling me you loved me and that you needed me to help you?

Did you know you were going to die?  Did Jesus, the Blessed Mother, St. Joseph and the Angels come and take your soul to paradise like we prayed?

Did we do the right thing?  Was there a chance you might have come back to us?  Should we have taken the ventilator off but kept the medicine on you to keep you from going into cardiac arrest?

I have so many questions about that day and that weekend from hell.  I will never know the answers unless you or our Lord chooses to reveal them to me this side of heaven.  And that is what keeps me up at night. So many unanswered questions.

May Angels lead you into paradise;
may the Martyrs receive you at your coming
and lead you to the holy city of Jerusalem.
May a choir of Angels receive you,
and with Lazarus, who once was poor, may you have eternal rest.

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.