My Migraine-Lyme Journey

I had some bad migraines when I was young and during college but very infrequently.  However, in 1995 things changed.  I was working as a tax manager in a very stressful corporate environment and I started having frequent tension headaches and migraines.  I figured I was too stressed and decided to quit my job in 1996.  However, even with less stress my migraines got worse and became daily within a few years.  I began seeing a local neurologist in 1995 and because he could not help me he suggested this “top” doctor at UCSF.  The doctor I saw was a horrible doctor and person but I kept going to see him because I was in so much pain and I didn’t know what else to do.  After numerous years I tried another San Francisco place that was so horrible I won’t mention it.  I was in so much pain I would try anything a doctor recommended. Then I found out Stanford Hospital opened a Headache center.  I went to the Stanford Headache Center in 2011 and they couldn’t even help me.  In fact, I only had 1 drug left to try in 2012.  I was told the drug eats away at your tissue so you have to get regular CT scans while you are on it.  I had already experienced enough horrific side effects from medications there was no way I was putting that in my body.

Unless you have had a migraine you can’t understand how it feels.   On a pain scale of 1 to 10 (10 being the worst), my normal day would be between a 4 and 6.  I went for 20 years without knowing what it felt like not to have a migraine.  I missed many fun events with family and friends and got to the point that scheduling something was impossible. When the pain got to a 7 or greater I went to emergency room to bring the pain back down to my normal level, 4-6.  Anytime someone I knew would get a headache (not a migraine) they would always ask me how I do it. How did I live every day with a migraine?  How did I live everyday with nausea?  How did I live with all the other symptoms that went along with it?  I don’t know. But I just keep going.  I even taught fitness classes at levels of pain that most people would have been in the emergency room for.  When the medical community can’t help you you don’t have much of a choice but to try and continue to live you life. I’m sure most people never even knew I had pain at all.

*I’ve estimated that I have had over 7,000 migraines as of January 1, 2017.*

I tried all types of medications (abortive and preventative), Botox (before and after FDA approval), nerve block, in-patient hospital stays for DHE, dihydroergotamine (2 times for 5 nights each time), alternative medicine, various diets, nutritional supplements, homeopathic medicine, Craniosacral therapy, Chinese medicine, massage, chiropractic, bio-feedback, medical marijuana, myofascial release therapy and a Cefaly device I purchased from Canada before it was FDA approved.  I lived on pain and nausea meds for a long time but nothing helped the unimaginable pain keeping me bed.  I had hospital vomit bags in my cars and all over my house just in case.  I won’t even get in to the horrifying (some life threatening) sides effects from medications I’ve experienced.  And I won’t get into the horrible medical bullying I experienced. After all this nothing helped but I kept reading more books about migraines and treatments and tried doing research on the internet.

In early 2013 I learned about neuro-stimulator implants at the Reed Migraine Center in Dallas Texas.  I flew there for a seminar, came back for a one week trial and had the permanent implant put in July 18, 2013.   I paid out of pocket for this since my insurance would not cover it.  It’s was not a cure but a way to manage my daily migraines. I thought that tingling in my head 24/7 and no pain 80% of the time was a better way to live.  

However, once my head pain was mostly gone from my implant everything below my head starting hurting and kept getting worse and worse.  It started with burning pain in my calfs.  I ignored it and kept going because I didn’t have the migraine pain. The burning then spread to my arms.  Then the tremors/shaking started.  So in 2014 I started seeing doctors again. By July 2015, the burning pain and tremors were so bad I felt crippled. I even had electricity shooting through my body sometimes. I couldn’t walk without taking prescription opioids.  I was almost at the point of needing a wheelchair.  I had level 9-10 pain every day and prescription opioids where the only thing keeping the pain level at a manageable level (5-6) allowing me to somewhat function.  It was debilitating.  I now know that the recent surgeries I had may have triggered more dormant infections.  Any trauma to the body can tigger dormant infections.  And Lyme and Co-infections can lay dormant for decades. Trauma can be a loss, accident, surgery and even having a baby. It’s something overwhelming and stressing your body.

*My hands were so bad I had a hard time functioning and holding things.*

I went from doctor to doctor and just couldn’t accept what I was being told.  First I was told I had Fibromyalgia (don’t believe this catch all label). I was then told I had an L5 pinched nerve and repetitive stress injury in my arms.  I was also told I had Thoracic Outlet Syndrome. Wth???  I’m sure if I had not found out the truth I would have received a early onset Alzheimers and Parkinson’s diagnosis. Yes, the memory loss and shaking were really bad.

I was told several times I did not need to see a Lyme Doctor.

Really?  Why?

  • Lyme doesn’t exist in California-FALSE.
  • Your test was negative so you don’t have it-FALSE.
  • You don’t remember a tick bit so you don’t have it – FALSE

Of course, when all tests come up negative I’m told I’m stressed and need psychiatric medications. I refused to believe all of this. I was determined to get to the cause of all this pain. 

In July 2015, I found a pain specialist who believed me, didn’t lie to me and actually said I don’t know what is wrong with you but I’m going to figure it out.  Thank god! Finally, someone was going to help me. After more horrific tests I went to a Lyme Literate MD.

On November 9, 2015 I was diagnosed with Lyme disease and the co-infections Babesiosis and Bartonella. I then found out that all my migraines were from these infections as well.

Finally, after 20 years I received a proper diagnosis.  A proper diagnosis is when you know the cause of your symptoms.  

The Medical Community Failed me for 20 years.

MD’s are taught by big pharmaceutical companies and they are not taught to determine the cause of symptoms.  They are taught to give you a label based on symptoms which they call a diagnosis and give drugs to mask symptoms.

Updated: Thursday, February 4, 2017

My health has worsened significantly.  I supposedly live in an area with top medical doctors and hospitals but that does not matter with Lyme Disease.  MD’s are not educated in it and they give up on you.  LLMD’s are not great either.  I do not use Lyme Literate MD anymore. They did not work for me but I know many that love them. So everyone is different.

Since my health and pain is so much worse I am heading to Germany for treatment.  I feel this is the best option for me.  You can read more about the Germany clinic on my blog in my my progress section.

I can’t begin to tell you how confusing and complicated this all is.  I think you need several different medical degrees to really understand it.

December 2017: I was also diagnosed with Chronic Inflammatory Response Syndrome (CIRS) caused by mold. You can read about that here.  Luckily, DNRS is healing my inflammatory response to mold.  

2017: The year I healed most all my Lyme and CO symptoms. Lots of Ozone Therapy and two trips to Germany for hyperthermia. The Healing Year

Updated: June, 2018:

Treating the causes (Lyme and CO’s) got rid of my daily migraine! Woohoo! My implant is off and I hardly use it anymore. Haven’t turned it on in months!! Wow!! I m not on any prescription drugs anymore.  Going off the drugs got my body back to my normal weight which was 40lbs less. 

Yes, I cured my chronic daily migraine that was 24/7 for 20 years.

Here is a short list of what I cured by treating the causes.

  • Chronic Daily Migraine for 20 years. 
  • Hypothyroidism
  • Depression
  • Burning pain over my entire body
  • Electricity pain shooting through my body
  • Anxiety
  • Tremors
  • Memory Loss
  • And more…see here for more symptoms.

If you have been diagnosed with something without a known cause like MS, ALS, Rheumatoid Arthritis, Fibromyalgia, Neuropathy, Lupus, Crohn’s, Parkinson’s, Chronic Migraine or any Mental Health Disorder (Depression, Anxiety, Bipolar) you might have Lyme disease and/or CIRS. Please read about testing  here .  Treat the CAUSE and you can possibly heal!  

I hope you enjoy my blog.


3 thoughts on “My Migraine-Lyme Journey

  1. Pingback: Why I am Anti-Fibromyalgia – A Migraineur's Life with Lyme Disease

  2. Pingback: This is NOT FAKE news! – A Migraineur's Life with Lyme Disease

  3. I also have migraines and Lymes disease, but fortunately, in Pennsylvania our doctors are Lyme literate.

    The problem here is the CDC. Every year we go on heavy antibiotics for about a month or so. I also survived babisiosis which has prevented me from donating blood.

    I have heard great things about German treatments for Lymes!

    The only difficulty I have heard from other patients is the hiking-set goes to Germany, comes back feeling great, then right back into tick infested woods without protective clothing or repellent.

    Reinfection is terrible. I live literally in the woods, so there really is no permanent solution. I am fortunate that currently my migraine management is working well, I wish you success with your upcoming trip!


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