Category: Fibromyalgia

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

 

For more updates follow my blog via email

 

What is Fibromyalgia #3?

I think @kimmiecakeskickslyme explains what I have been thinking and posting about very well.

Is Fibromyalgia Really Lyme Disease?

 

kimmiecakeskickslyme

 This post is geared toward those with a Fibromyalgia diagnosis, but might be a good read and please share this information as I feel it could help people find answers and a path to a normal life. 

 

 I know this post is going to offend. Ok maybe REALLY offend. But with the recent great article posted by Envita, I think this topic needs some further dwelling and consideration. But readers, I am blogging with all the good intentions as I want nothing more than you all to get your lives back. Many of you are completely debilitated, and your lives have been destroyed. 

 

I am hoping that you can all read this with an open mind. 

 

This one really hits home to me since I was misdiagnosed with Fibromyalgia and CFS at the age of 21. I was an overachiever and had all the “trigger points”, IBS…

View original post 1,024 more words

What is Fibromyalgia #2?

In my last post I stated that even the Mayo Clinic doesn’t know what causes Fibromyalgia.  Well, this is what I read today from Crow.com

Key Factors Behind Fibromyalgia
The risk factors for fibromyalgia typically include; being a woman, having a relative also diagnosed with fibromyalgia and if you have a rheumatic disease, such as lupus or rheumatoid arthritis. It is often difficult to diagnose fibromyalgia and many people often go years before a diagnosis is made. Doctors previously checked 18 specific points on your body to see how many points were painful when firm pressure was applied. The current guidelines for diagnosing fibromyalgia no longer require this type of exam, instead the diagnosis can be made if you have had widespread pain for greater than three months and without an underlying medical condition that may be the cause of your pain. There are no specific lab tests that can be done to confirm the diagnosis of fibromyalgia, however, your doctor may run a variety of tests to rule out any other conditions that may have similar symptoms. For example, a blood test is typically done to check your complete blood count, erythrocyte sedimentation rate and thyroid function.”

I highlighted the blue because I was diagnosed with Fibromyalgia only after a few tests were done.  The Rheumatologist didn’t think I had Lyme Disease because I didn’t remember being bit my a tick.  However, ticks are so tiny they do there damage and fall off and most people don’t even know they got bit AND majority of people DO NOT get a bulls-eye rash.

Personally I believe Fibromyalgia is just a disease of symptoms.  And, I believe there are many people that are told they have Fibromyalgia when they actually don’t.  I’ll share again Dr. Horowitz’s Lyme-MSIDS Questionnaire to see if you may have Lyme Disease.

Don’t’ you want to know what is CAUSING your pain?  

 

 

 

 

 

 

 

What is Fibromyalgia?

Have you been diagnosed with Fibromyalgia?

#Fibromyalgia 

What test was done to confirm your diagnosis of Fibromyalgia?

Are the medications you take for your Fibromyalgia helping you?

Do you question what Fibromyalgia really is? 

Do you know what causes Fibromyalgia, because Mayo Clinic doesn’t.

Do you want to find out the CAUSE of your pain, fatigue and other symptoms?

The first diagnosis I received was Fibromyalgia. I didn’t accept it because it wasn’t telling me what caused my symptoms. I tried the Fibromyalgia drugs because I was in so much pain but none of them helped.  So I decided to go to another doctor and another until I got my answer.

I was finally diagnosed with Lyme Disease and the co-infection Babesia. To get a proper diagnosis I had to go to a ‪#‎LymeLiterateMD‬. Your regular doctor will not be able to diagnose Lyme accurately.  After I was diagnosed I started educating myself on Lyme Disease and came across this questionnaire.

Take the test:  Dr. Horowitz Lyme-MSIDS Test

Possible Lyme Disease Symptoms

I’ve been reading a lot about Lyme disease and came across a list of  possible symptoms.  This is shocking!

“Persistent swollen glands, sore throat, fevers, chills, sore soles, especially in the morning, joint pain and/or swelling in fingers, toes, ankles, wrists, knees, elbows, hips, shoulders, numbness in the arms and/or legs, unexplained back pain, stiffness of the joints and back, muscle pain and cramps, obvious muscle weakness, twitching of the face or other muscles, confusion, difficulty thinking, difficulty with concentration, focus and reading, problem absorbing new information, searching for words and names, forgetfulness, poor short term memory, poor attention, disorientation: getting lost, going to wrong places, speech errors, such as wrong words or misspeaking, mood swings, irritability, depression, anxiety, panic attacks, psychosis (hallucinations, delusions), paranoia, bipolar, tremor, seizures, headaches, light and sound sensitivity, double, or blurry vision with floaters, ear pain, hearing problems, such as buzzing, ringing or decreased hearing, increased motion sickness, vertigo, spinning, off balance, “tippy” feeling, lightheadedness, wooziness, unavoidable need to sit or lie, fainting, flu-like feeling, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis-Bell&rsquos Palsy, dental pain, TMJ, neck creaks and cracks, stiffness, neck pain, fatigue, tiredness, poor stamina, insomnia, fractionated sleep, early awakening, excessive night time sleep, napping during the day, unexplained weight gain or loss, unexplained hair loss, pain in genital area, unexplained menstrual irregularity or milk production, breast pain, irritable bladder, erectile dysfunction, loss of libido, queasy stomach, nausea, heartburn, stomach pain, constipation, diarrhea, constipation alternating with diarrhea, low abdominal pain, cramps, heart murmur or valve prolapse, heart palpitations or skips, “Heart block” on EKG, chest wall pain or sore ribs, head congestion, breathlessness, “air hunger,” unexplained chronic cough, night sweats, exaggerated symptoms or worse hangover from alcohol, skin rashes, conjunctivitis (pinkeye), herpes, Zoster/Shingles.”

#ChronicPainSucks: Part VIII

On October 6, 2015 I went to see [6] Melissa McElroy, a Nurse Practitioner in Dr. Strickers Office in San Francisco.  They had a lengthy questionnaire and I spent an hour with Melissa discussing all my medical issues and getting an exam.  Her initially thought was that I have the typical story of someone with Lyme disease but wanted to run blood tests.

I had 7 test tubes of blood taken.

Lyme and co-infections, diabetes, hashimotos and many other blood tests were done.  But unfortunately it takes one month to run the lyme tests.  In the mean time, I had a lot of anxiety about everything.  I was happy to get all the blood tests done but anxious about the unknown.  Not knowing what’s wrong, having so many doctor visitors and given so many different diagnosis’s is really overwhelming and exhausting.

So at this point I have seen 6 doctors not including my Ex-Psychiatrist.  I’ve have also been given 5 different opinions.  #Fibromyalgia, #L5 pinched nerve, #Repetitive stress injury, #Thoracic Outlet Syndrome and possibly #Lyme disease.  

And the story continues……………..

#ChronicPainSucks: Part IV

Someone once told me to remember that 50% of the doctors graduate in the top half of their class and 50% graduate in the bottom half.  

So instead of going to Stanford Pain Center I found Remedy Medical Group in Redwood City, California.  If you suffer from chronic pain I highly recommend them.  They have an office in San Francisco too.   [3] Dr. Smolins and Dr. Date are great.  Dr. Smolins was the first doctor that listened to me.  He also was very familiar with neuro-stimulators.  Different ones from mine but most doctors don’t know about them at all.

Dr. Smolins didn’t agree with the diagnosis of repetitive stress injury but said I could possibly have a pinched nerve but I didn’t really have the typical signs of having it and that would not explain my upper body pain.  YES!  That’s right!  He thought that possibly I have Fibromyalgia but I didn’t have the typical signs for that either.  Here was The Plan:

  1. Rule out that my implant is causing the problem.
  2. Get an X-Ray of my neck
  3. Talk to Dr. Bulger in Dallas to see if he thinks it might be the implant.
  4. Give me pain meds to get through this until it’s figured out.
  5. Do a nerve test called an EMG

So by now I’m up to 15-20mg of Norco a day.  That’s a lot to take in one day.  I have a high tolerance for pain medications but at this point I was waking up every day with level 9-10 burning pain everywhere.  Hands, arms, palms, legs, calfs, bottom off my feet and my back.  Everything but my head because my implant keeps the pain in my head away.

So getting the X-Ray was easy but doing the nerve test was not.

Dr. Elaine Date conducts the nerve test.  It took 3 unpleasant visits to get the test done.


Electromyography (EMG)

See WebMD for more information

First Visit:   The easy part.  Electrodes are places on you and a metal tool is used to send a signal to the nerves.  Your hand will jerk and nothing hurts.

Second Visit:  The second part of the test is EXTREMELY painful.  The doctor sticks a needle into your muscle and touches a nerve.  The nerve is touched and the needle is moved and you have to move that part of your body.  My husband came with me for the test and it’s a good thing.  I had a VASOVAGAL reaction.  My medical friends will know what this is.  Basically, The extreme PAIN caused me to almost faint.  I was laying down but Dr. Date had to stop the test.

Third Visit:  I received one valium pill before the test so I was a little bit more relaxed.

To be continued………………….

#ChronicPainSucks: Part III

In July my condition became a lot worse and I was living with level 9-10 pain every day.  The pain scale goes from 1 to 10 with 10 being the worst pain.  I was having a hard time functioning.  The pain was so severe I felt crippled.  By August I felt I would be in a wheelchair soon if I didn’t figure out what was was wrong.  Notice I said “if I didn’t figure out what was wrong”.  Yes, I had to figure it out myself.

I  was do for a visit with my Psychiatrist (I’m not counting her as one of the 5 doctors’) so I went to see her.  With 20 years of being in a dark room with migraines you naturally get depressed and become severely vitamin D deficient.  After my implant I started going off the antidepressants and was down to a small dose of Cymbalta.   At one point I was on 7 different medications.  It becomes so difficult to manage that many medications and it’s dangerous because it’s easy to make mistakes.  Just ask my husband~ And ask my friend Colleen how fun it is when Kim forgets to bring her medications on vacation.

Because I was so frustrated, mad and upset that no doctor was helping me, she said I needed a mood stabilizer.  WTF?  So this is how it always works….throw drugs at a problem.  Our medical system in the U.S. is ruled by the drug companies.  Pharmaceutical companies care only about the money and not helping patients get better.  Doctors just want to treat symptoms instead of figuring out what is wrong.  In fact, they treat side effects of a medication with another medication.  Have you seen the commercials for a medication to take to help opioid induced constipation?    So instead of adding fiber to your diet they recommend a drug.   I refused to accept another drug from the psychiatrist.  And, I am no longer seeing a psychiatrist.  I didn’t need a mood stabilizer.  I needed answers!

Back to my PCP at the Palo Alto Medical Foundation

My PCP has been amazing.  She listens to me and has helped me through many years of migraines.    She suggested I move on to the Stanford Pain Center.  Since I have been a patient with them in the past and didn’t really have a good experience I decided to find someone outside of Stanford.  My back up plan was to go to Stanford.  I googled pain doctors in my area and thankfully I found Remedy Medical Group.  And lucky for me they have an office in Redwood City.

To be Continued……