Category: Lyme Disease

This is NOT FAKE news!

This is a video of a women who is screaming in pain.

This is a video of a kid screaming in pain. 

Some may see these online and think that this woman or the boy is faking it. Most doctors think that we are faking it so why shouldn’t everyone else.  This is not fake news.  This is real!  The pain from Lyme Disease is so beyond what you can comprehend.  I have Lyme Disease and I can’t comprehend how horrific my pain is and I have had a migraine ever day for 20 years.

When I first was diagnosed with Lyme Disease I had no idea how confusing and complicated this disease was.  I had no idea that my threshold for pain would have to get higher.  I had no idea I would be treated so poorly by the medical community, once again.  I had no idea  that so many people have this disease and don’t even know it.  I was clueless!  But here I am 15 months later and I have a better understanding about Lyme Disease but still do not fully understand it.  How could I fully understand it when the medical community doesn’t even fully understand it.  In fact, most doctors think I have a disease that is HARD to get and EASY to cure.  OMFG!  That is so far from the truth.

Lyme Disease is so easy to get and so hard to treat!

If you want to learn more and follow my journey here are some links:

My Migraine-Lyme Journey

Lending Library

Getting Healthy

Follow me on Facebook

My plan to travel to a treatment center in Germany

Punchy Jewelry

 

 

Learning to Say NO during the holidays when you live with a chronic illness

Learning to say NO is hard.  Everyday we comprise our health and continue to say yes to things when we have a chronic illness even though we don’t want to go.  But saying NO during the holidays is even harder.  WHY?

  • We have a hard time saying NO because we don’t want to let others down.
  • People have a hard time accepting NO when you have previously done the same thing with them for years and years in the past.  
  • It’s the holidays and family feel they all have to be together.

This is especially hard during the holidays because family expect us to attend holiday get togethers.  They expect us because for years we have been attending even while we are sick.  And for years we have not been comfortable attending at all.  We also don’t have fun being around others when we are chronically sick.  We constantly have to fake it.  And faking it is exhausting!

What can you do do get through the holidays?

  • Say NO if you feel that is the best answer for your health.
  • Explain that you would love to if you felt better and will miss everyone but just can’t make it this year.
  • Remind family members how you have been feeling lately and that it is best you stay home this year.
  • Remain strong about your NO decision.  Your chronic illness is not your fault so don’t feel guilty about not attending events.
  • The stress of the holidays can make us feel worse so saying NO is sometimes the best answer.
  • Shopping is hard when you are sick but it’s ok not to buy presents for family and friends if you are not up to it.  The holidays are not about gifts!!
  • Remember that you eat differently than “healthy” people and it causes more you more stress to have to bring your own food so staying home is more relaxing.  
  • Cooking is hard when you are sick and it’s ok if you don’t cook for others.
  • Remember most people will understand and if they keep asking you or say “they are saving a place for you” remind them  –  NO you will not be attending this year.
  • Ask others to remember that “horrible flu” they had and how they couldn’t get out of bed because this may allow them to understand better.  Even though that “horrible flu”  would be awesome compared to your chronic illness.
  • Skype with your family from your home for a few minutes during the day to say hello.
  • We are allowed to practice SELF-CARE every day of the year.  And when you have a chronic illness self-care is the most important thing.  

 

santa-meme

 

 

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

 

 

 

 

The Lyme Long Con Continues

Thanks @readbetweenthelyme for your article.

So true ” the most dangerous health crisis of our time”

 

The CDC and IDSA continues the Lyme long con….

Source: The Lyme Long Con Continues

Lyme Disease vs Fibromyalgia Diagnosis 

I’m glad I did not accept the Fibromyalgia diagnosis I received.  The Rheumotolisgts and Neurologists just assumed I did not have Lyme Disease.  One even saying that I DID NOT need to see the Lyme doctor I had already scheduled an appointment with the day after seeing him.  

Its maddening that most medical professionals just dismiss it as a possible cause of your symptoms.  

Why does it keep getting dismissed??  Because the CDC continues to deny that Chronic Lyme exists and doctors are not educated about Lyme Disease.  

Unless you see a Lyme Literate MD (LLMD) you DO NOT know the truth. 

If you want to know THE CAUSE of your symptoms don’t rule out Lyme Disease and see an LLMD.

Check out this article by Donna Gregory Burch

Why You Shouldn’t Blindly Accept Your Fibromyalgia Diagnosis

Somewhere at some point medical professionals lost site of their goal of helping patients.

I previously believed those doctors that told me they did not know why I had a migraine every day for almost 18 years (now 21 years but 3 with my implant keeping the pain away).  Now I know for sure they were all wrong.  I won’t name places but I live in the San Francisco Bay Area and went to the “TOP” medical facilities here so you can figure it out yourself.   

So Conventional medicine is probably what we are most familiar with because we have been going to these type of doctors since we were young.  Conventional medical doctors are trained to determine what disease you have, give you a diagnosis and treat your symptoms with either a pill or surgery.  Conventional doctors are not trained to figure out the cause of your symptoms.  They are trained and paid to diagnose diseases.  

My understanding of Functional medicine is that the doctor is looking to determine the underlying cause of your symptoms.  These doctors will do thorough digging into your history and lifestyle and try to determine if something is causing your symptoms.  Doesn’t that make sense?  They can give you a diagnosis but also tell you why you have a particular disease.  They may incorporate conventional medicine and alternative medicine in their treatment plan.  Alternative medicine may incorporate herbs, homeopathic, nutritional supplements and more.  They want to determine if you body is working properly and fix it is it’s not.

You may also see Integrative medical practitioners.  They are medical professionals that integrate alternative treatments in their practice.  So you might see an Medical Doctor that uses Chinese Herbs or does acupuncture.

I feel that the a lot of medical professionals are failing patients.  It’s maddening to me that I went to “Top Headache Specialists” for 18 years and not one had any other options but pills or injections.   Not one thought about why I was getting all these migraines.  Not one really cared about the debilitating pain I was suffering every day.  All all of them said they did not know WHY I was getting these daily migraines.  And I was also “laughed at” when I said I was going to do a trial of my implant.  

Here is how migraine patients are treated:  Generally, you wait several months for an appointment and when you finally get in you are with the doctor for 10 minutes.  And you most likely had to drive a long distance (sometimes an hour) to see them.  You feel pressured to remember everything you wanted to ask before they start to get up and leave the room.  You are usually given numerous prescriptions to try and told to come back in 3 months.  I even had one “Top Headache Specialists” that didn’t want me as a patient anymore because I missed one appointment in seven years.  I know!  WTH?  

And NOT ONE of my specialists in San Francisco Bay Area thought to test for possible allergies, food sensitivities, hormonal imbalances, nutritional deficiencies, environmental toxins, Lyme Disease or anything else that would be causing a daily migraine for over a decade.

Here is how Lyme patients are treated:  You start with your primary doctor who does blood tests and then gives you some general meds to relieve the symptoms.  Then after months of that you move on to a specialist or 2 or 3 or 4 or 5…  The specialists give you a diagnosis in their field of expertise and sends you away with more meds.  Then when your symptoms don’t go away they send you to a psychiatrist because they think it’s all in your head.

•Somewhere at some point medical professionals lost site of their goal of helping patients•

If your are given ANY diagnosis ask HOW you got it.  If they say they don’t know – move on to another doctor.  If they say it was an bacterial or viral infection but don’t know what bacteria or virus – move on to a Lyme Literate MD.  You most likely have Lyme [Borrelia burgdorferi] or of one of it’s many co-infections.  

Stop accepting I DON’T KNOW as an answer.  We are a county of Big Pharma and we are taught to believe our doctors and trust them and take everything they prescribe.  Not one doctor has all the answers.  Not one medical facility has all the answers.  STOP!  Question medications before you take them.  

Don’t get me wrong.  I’m not saying everyone has Lyme Disease [Borrelia burgdorferi] or of one of it’s many co-infections.  But millions have it and won’t accept that their doctor may be wrong.  So here is how I break it down.

If you have one (1) thing wrong like one bad knee then you most likely don’t have Lyme.  BUT if you fall under any of these you probably have Lyme [Borrelia burgdorferi] or of one of it’s many co-infections.  

  1. If you have been sick all your life 
  2. Have had many ailments over your lifetime 
  3. Have many symptoms
  4. Have a mental illness and other health problems
  5. Have been told you have many different diseases
  6. Have bad brain fog that you didn’t have previously (memory loss or confusion) and/or told you have many illnesses

People can die from Lyme [Borrelia burgdorferi] or of one of it’s many co-infections.  JUST DON’T RULE IT OUT!  And get to a Lyme Literate MD see LymeDisease.org for more info.

•Somewhere at some point medical professionals lost site of their goal of helping patients•

 

 

 

 

My Exclusive ER Club

Two weeks ago I decided to visit my brother Dan in La Quinta, California near Palm Springs.  The purpose of my trip was to see if my house was making me sick.   When I was in Wisconsin for my nieces wedding in June I felt a lot better and got sicker right after I got back home. So going to the desert for two weeks would be a longer test.

However, I had to just add a surgery in while I was there.  Dan and his girlfriend Liz needed to join the ER club.  The club unfortunately has a lot of members and I even have a twice in one day club.  I’ve decided that I need to create levels in my club and hand out ribbons or plaques to keep my club members happy.

  1. Platinum Level  – Emergency Room Visit including Admission or Direct Admission to a Hospital or Surgical Center with an Overnight Stay.
  2. Gold LevelTwo visits to the Emergency Room in one day.
  3. Silver LevelDrop off or Pick at the Emergency Room or Surgical Center w/o an Overnight Stay.  
  4. Bronze Level– Visiting me while I’m in the Emergency Room or when I’m doing a Hospital Stay.

I don’t need to name names because I think the members know what level they are so I can only say my husband qualifies for all levels and that I am very grateful for all my supportive family and friends.

So, is my house making me sick? 

More to come on that later……..

Warning: ZOFRAN Oral Disintegrating Tablet contains Aspartame!

Why do “Headache Specialists” prescribe this for migraine patients?  

I just found this out from a migraine sufferer I follow on twitter.  This is maddening!  Aspartame is horrible for you and a HUGE Migraine Trigger!  WTH?

Here is the drug information from Glaxo Wellcome Inc.

Zofran Oral Ingredients

Zofran is prescribed for nausea but there are many other anti-nausea medications.  This drug has never been my favorite anti-nausea medication but it’s convenient because each pill is packed in foil and doesn’t need to be refrigerated.  I will never take it again.  It’s flavored because it’s an oral tablet.  So dumb!  And now I have to check out all the other anti-nausea meds I take or that I have been given in the emergency room.   I’ll keep you updated on my research.

 

 

I have Lyme disease: my discovery after 15 years with ME/CFS and two with Fibromyalgia

Thank you Laura for sharing your story. I hope more people become aware about Lyme Disease and more money is put towards educating the medical community. And most importantly I hope more money is put towards helping patients. All Lyme treatments (doctor visits, Rx, testing, supplements) have to be paid up front and then submitted to your insurance to MAYBE get part of it reimbursed. It’s nightmare to have to deal with the insurance especially when you’re so sick. I have a stack of “Super Bills” to mail in. I think they named them “Super Bills” because it’s all SUPER expensive. Best of luck Laura on your healing journey.

Laura's pen

It’s taken me a long time to write this post. I wanted to wait until a medical professional told me it was true, and even then it’s taken a while to put my head together enough to talk about it. In short: I have Lyme disease.

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I’m still me.

Lyme Takes Time

I’m still my father’s little girl, my mother’s best friend and my brother’s sister. I’m still your cousin, your niece and your granddaughter. I’m still the friend that will make you laugh and the friend that will always be there. I’m still the girl you can talk to about anything, the girl who will cry with you and tell you it’s going to be alright. I’m still the friend you can call up out of the blue and pick up right where we left off. I’m still the girl who will stick up for you, remind you of your strengths and tell you how much you matter. I’m still the friend that will always try and make everything okay, the friend that will gladly go out of their way for you and who will always try to make you smile. I’m still the friend who will always care about you…

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“I didn’t come this far to only come this far.”

Sharing more stories to help educate others! #keeponfighting

Lyme Takes Time

My name is Kate. I’m 26, I haven’t gone to college, the only relationship I have is with my bed (or sometimes the couch) and I’m trying to get back on my feet again after fighting Lyme Disease for most of my life.

Some of that may sound familiar since I originally wrote it in an earlier post back when I first started this blog. I wish my absence meant I’ve only been improving but, that’s unfortunately not the case. In the posts-to-come, I’ll be sure to update you on my continuous fight with Lyme and all the difficulties you must face dealing with a chronic illness such as the loss of friendships, relationships, independence and how many, many, many of us are not giving ourselves the credit we truly do deserve. We’re still fighting, we’re still here. That means something, right?

Most don’t have a clue what someone with…

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Can I get Lyme Disease from Donated Blood?

YES

Per the Transfusion News article the FDA recommends all donated blood be tested for Babesiosis which is a co-infection of Lyme Disease.  Is that being done?  NO

The problem is

  1. Not every state in the country is testing donated blood. In fact only one state is.
  2. If you do get Babesiosis most likely your doctor won’t know you have it.
  3. Lyme Disease and it’s co-infections mimic over 300 other diseases and your doctor(s) will most likely give you many other diagnoses that are not correct.

What is Babesiosis?  Babesiosis is a malaria like parasite infection.  It’s one of the Lyme Co-Infections.  Here are some of the symptoms, fatigue, headache, drenching sweats, muscle aches, chest pain, hip pain and shortness of breath (“air hunger”). I’ve had all of these symptoms but the drenching sweats and air hunger are gone now.  Check out some links about Babesia.

So, per American Red Cross (ARC) website

“Blood donations are tested for the following:

  • ABO and Rh blood types.
  • Unexpected red blood cell antibodies that are a result of prior transfusion, pregnancy, or other factors.
  • Hepatitis B surface antigen, indicating a current infection (hepatitis) or carrier state for hepatitis B virus.
  • Antibody to hepatitis B core antigen, indicator of a present or past infection with the hepatitis B virus.
  • Antibody to hepatitis C virus, indicating a current or past infection with hepatitis C virus (most common cause of non-A/non-B hepatitis).
  • Antibody to HTLV-I/II, indicator of infection with a virus that may cause adult T-cell leukemia or neurological disease.
  • Antibody to HIV-1/2, indicator of infection with human immunodeficiency virus (HIV).
  • Nucleic Acid Test (NAT) for hepatitis C (HCV), hepatitis B (HBV) and HIV.
  • Screening test for antibodies to syphilis.
  • NAT for West Nile Virus (WNV).
  • Enzyme-linked immunoassay (ELISA) test for Trypanosoma cruzi (Chagas Disease).

In addition, all platelet apheresis donations are tested for bacterial contamination.”

They also state that they will notify you if you blood test positive for an infectious disease.  But if they don’t test for it then you will never know if you have it.

The ARC website also states that they are doing an Investigational Study to test blood for a tick-borne parasite.

Sorry folks that have received a blood transfusion 😦  

Good news is it probably saved your life!

And what about all the other infections?  Hmmmm.  Not good!

But I can tell you that you didn’t get it from me.  I’ve never donated blood.  Good thing!

 

 

 

 

 

Patrick

This is the same familiar story for all Lyme patients. I love that Patrick wants to help others like I do. Medical school needs to educate doctors about Lyme disease so patients like us don’t have to suffer. Lyme disease exists everywhere and the denial that chronic Lyme disease doesn’t exist is disgusting.

ticktalksite

My name is Patrick Plum, and this is my story:

It was summer of 2012. I was living in the Midwest of the United States a few months before my 33rd birthday.

I had my dream job as a pilot for a major airline for 5 years. I’d been dating a girl for two years and had just bought an engagement ring. I was in excellent shape. I had just earned my first degree black belt, was teaching boxing and working out 2 plus hours a day. I was an avid motorcyclist and on my days off I’d often volunteer taking friends and their kids on single engine airplane rides. I also taught flying part time at a local airport. To be cliche, I was living the dream. My hard work was starting to pay off. One day, I looked in the mirror and saw a big “yellow bruise” on…

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Opioid Painkillers & Chronic Pain: Part II

As I’ve previously mentioned, we have a HUGE problem in this county with people and chronic pain.  And the doctor in this article thinks the patients need to be educated and he seems to  blame the patients.  Read it here:  Pain News Network

Well I think there needs to be a shift in educating the medical professionals.  Medical doctors are not trained to figure out the CAUSE of someone’s pain they are trained to treat symptoms.  So stop blaming the patients!  Most medical doctors don’t think outside the box.  If you go to a rheumatologist you will get a diagnosis of a rheumatological condition.  If you go to a heart doctor you will get a diagnosis of a heart condition.  If you go to a psychiatrist you will get a psychiatric diagnosis.  This need to change in medical school.

So, maybe no one has ever died from being in pain but chronic pain is horrific and can be devastating.  I have passed out from severe pain.  Chronic pain effects your entire body including your mind.  Think of all the people that have killed themselves because they lived in constant pain and couldn’t take it anymore.  Pain does kill!  Read Sherri’s Story  This is so sad and shouldn’t happen.  A website in her memory.

Stop blaming the patients!  We need better pain care management.  We need insurances to cover alternative or natural treatments.  And we need doctors to support us!

Opioid Painkiller and Chronic Pain: Part I

 

 

 

Rape Culture in the USA: Part II

I recently watched the movie called “I Spit on Your Grave” from 2010.  It’s a remake about a woman seeking revenge after being gang raped.  After the movie I read an article online about a rape lawsuit filed against a potential USA President.  I am so disgusted by this person that I won’t even say his name in my blog.  I was disgusted by this person before reading about this rape case against him of a 13-year old and previous assault and attempted rape cases against him.   But this is what he says?  “When Mexico sends its people, they’re not sending their best” “They’re rapists”

He constantly makes sexist and derogatory comments towards woman.  He is a disgrace.

The fact that someone like this, who republicans think is the best candidate for the job could be the leader of this country is maddening and unbelievable.  This isn’t a one time case with him.  There is history here.  When will woman’s voices be heard?

I normally blog about living with daily migraines and lyme disease but the #RapeCulture in this country makes me sick and it needs to change.

A link to some of his quotes

More quotes

So I hope you take a moment to read this article about this potential president.

Why The New Child Rape Case Filed Against Donald Trump Should Not Be Ignored

 

Rape Culture in the USA: PART I

P.s., The movie is very graphic and there is a “I Spit on Your Grave 2”.  OMG!