Category: Migraine and Headache

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

 

 

 

 

Cannibas Oil used to treat Lyme Disease

http://www.healthy-holistic-living.com/cure-lime-disease.html
Does anyone know what specific oil works?

#RHOBH

To the RHOBH,

Yolanda isn’t lying!  Stop judging her!  You should show some compassion.  Get educated on Lyme disease instead of being ignorant.

No, I don’t watch this show but heard about Yolanda.

 

Click here for article

Cover-up by CDC

The more and more I read about this the more disgusted I am.  What other diseases are treated this way?  It’s all money and politics!  Unbelievable!

Thank you @Healthist.co!

Click here for article.

Daith Piercing 

Anyone tried this?  Seems like an acupuncture point. 

https://drupalsites.purchase.edu/journalism/index.php?q=node/49

Food Sensitivity Test

Headache doctors always ask you to keep a food diary [WebMD Migraine Headache Diary] to try and figure out your triggers.  However, that is really hard to do because if you are sensitive to certain foods you may not get a reaction to them the same day you eat them.

You can read many lists of potential migraine triggers and avoid ALL these foods and still have migraines.  Right?  Yes!  Millions of us do.

Here is an article by the #AmericanMigraineFoundation about “Migraine and Diet”  Do you think it is helpful?  I don’t.

I suggest a food sensitivity test.  I got one through my Naturopathic Doctor and I have be avoiding many foods for a couple of months now.  The holidays made it difficult but now I’m being really strict about avoiding those foods.

Since I have been really strict I have been able to turn my stimulator down.    I have control of all 4 leads so my goal has always been to get them as low as possible without have pain.  I also shut all the leads off for one day and didn’t have a migraine.  That is HUGE!!!  Before my implant I had a migraine 24/7 and I couldn’t remember what it felt like not to have a migraine.  AMAZING is what it feels like.

Why didn’t any of my “TOP” headache specialists ever suggest a food sensitivity test?  Because they are just focused on treating the symptoms and not the cause.

I’ll keep you updated on the food sensitivity results.  My ND believes migraines are either from a food sensitivity or Lyme Disease.  LOL!  I have both.

Check out ImmunoHealth and Better Health USA

 

 

 

 

 

 

 

 

 

Lyme Disease Part 3: David Michael Connor

http://www.huffingtonpost.com/david-michael-conner/is-lyme-the-new-aids-part_1_b_8345748.html

Migraines and Lyme pic

Lyme Disease Part 2: by David Michael Connor

http://m.huffpost.com/us/entry/8696886

Lyme Disease Part 1: by David Michael Connor

http://m.huffpost.com/us/entry/8696794

Lyme Guidelines from CDC

The Lyme disease treatment guidelines from the CDC are outdated.  Why are they not updating the guidelines?

Click here to get the information

The Lyme patients are the ones that have to suffer because of these outdated guidelines.  Lyme patients are not getting access to treatment they need to get better because insurance companies won’t pay.  Some Lyme doctors are suffering and have lost their medical licenses even through they are helping patients get better.  It’s unbelievable!

The International Lyme and Associated Diseases Society (ILADS) has current guidelines that should be used for patients.

Lyme Disease Patients and Families:

  • Needs better and more accurate testing.
  • Need non-Lyme Literate MD’s to become educated.
  • Need access to all available treatments including conventional and alternative or natural treatments.
  • Need a vaccine developed for Lyme disease and it’s co-infections.
  • Need doctors to believe their pain and other symptoms.  It’s not “all in their head”.  The pain is real.
  • Need all medical professionals to acknowledge that Lyme disease exists everywhere in the world.
  • Need all medical professionals to acknowledge that Lyme disease can “mimic”  over 300 diseases.
  • Need more funding for research to find a cure.
  • Need everyone to show compassion when others say they have any illness or live with chronic pain.
  • Need everyone to do the #lyme4Lime, #Lymediseasechallenge

Click here to see the video

 

 

 

 

CDC Guidelines

CDC Refuses to End Preferential Treatment of IDSA Lyme Guidelines in Response to Citizen Petition

 

Read article

Lyme Disease Challenge

Bring limes to your holiday get together so the entire family can take the challenge to raise awareness about Lyme Disease and support Lyme patients.

 

Thank you!

Click here to view on youtube.com

My “break-thru” Migraine

I was always saying this before I had my implant.  Even though my implant is on 24/7 I sometimes feel the migraine.  I call that a “break-thru” migraine.

About 90% of the time I can turn up my stimulator and get rid of the “break-thru” Migraine. But, today isn’t one of those days. Weather changes are my only known trigger so when the barometric pressure decreases I get the migraine.  Right now it’s storming  in California and I know we need rain but my head hates it.  image

#ChronicPainSucks: Part X

I feel better than I have in months.  In November I started 2 antibiotics for the co-infection, Babesia.  Check out info about it at LymeDisease.org

AND

I am working with a Naturopathic Doctor [ND] from Los Altos, CA.  She is the reason my pain is less now.  I am getting IV Ozone treatments, doing a homeopathic detox and getting B12 shots.  She also did a blood test for 150 common foods that I am sensitive to.  So I have to eliminate a lot stuff but I’m feeling much better.

I started working with the ND in October before I knew that I had Lyme Disease.  She believes migraines are caused by food sensitivities or Lyme Disease.  She has a 80% success rate at helping patients with migraines.  WOW!  Wouldn’t that be great if some day I could turn my stimulator off.

Right now I am just happy my pain is a lot less.