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 decided to quit in 1996.  However, even with less stress my migraines got worse and became daily within a few years.   I began seeing a neurologist in 1995 and then moved on to UCSF to a doctor that was supposed to be really good.  He was a horrible person and doctor but I kept going to see him for years because I was in so much pain I didn’t know what else to do.  After about 7 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 2 drugs left to try in 2012.  One I had to get in Canada and the other I was told eats away at your tissue so you have to get regular CT scans while you are on the drug.  Why would I want to put that in my body?  I decided against both of them.

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 almost 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?  I don’t know.  You just keep going with the hope that something will help.

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

I became severely depressed!  I had no life.  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, 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 sides effects from medications I’ve experienced.  After all this nothing helped but I kept reading more books about migraines and treatments and tried doing research on the internet.

Thankfully,  in early 2013 (from my animals Veterinarian, http://www.woodsidevc.com) 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 was worth every penny!  I got my life back!  It’s not a cure but a way to manage my daily migraines. 

Updated: November 27, 2015:

For the past year I have been volunteering for the non-profit Miles for Migraine (www.milesformigraine.org).  I was the Board  Treasurer but had to step down because I was just diagnosed with Lyme Disease and was getting sicker and sicker.

Check out my Post Chronic Pain Sucks: Part I to X to see how I got to my Lyme diagnosis.  It was a nightmare!  Once my migraine pain was 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.

*If I didn’t have a migraine, it was a great day and I didn’t care about anything else.* 

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 shaking was so bad I felt crippled.  I couldn’t walk without taking opioids.  I was almost at the point of needing a wheelchair.  I had level 9-10 pain every day.

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

I went from doctor to doctor and just couldn’t accept what I was being told.  First I was told  I had  Fibromyalgia (a disease of symptoms).  I was then told I did not have Fibromyalgia and that I had an L5 pinched nerve and repetitive stress injury in my arms.  That was a wild guess.  Then I was told I needed a mood stabilizer because I was so upset that the doctors were lying to me and no one was helping me.

In July 2015, I searched online and 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.

In October 2015, I went to a Lyme Literate MD (LLMD) in San Francisco and on November 9, 2015 I was diagnosed with Lyme disease and the co-infection Babesiosis.

Updated:  February 18, 2016

I know I have had Lyme Disease at least 20 years.  It’s also possible that I got Lyme as a kid and have had it for over 40 years.  I say this because I have had many illnesses my entire life.  I’m sure my migraines are from the Lyme disease or something else I have.  I am fortunate that I have my implant so I can now deal with the real cause of my health problems.

Updated: Monday May 16, 2016

Here is a longer version of my story on a guest blog.  LA Edwards Writer

Updated: Thursday, July 14, 2016

I have been doing many treatments for all the infections in my body.  My days and up and down.  I still have a lot of pain and a long treatment road ahead of me but I feel I have a good team supporting me.  My husband, my family and my friends are the best!  And then my medical team is awesome too.  My BabesiosisPrimary Care Doctor, my Pain Specialist, my Naturopathic Doctor, my Lyme Literate Nurse Practitioner, my Acupuncturist and Reiki Healer and my Personal Trainer.

It takes a lot to get healthy from multiple illnesses that have been in me for a long time.  Here is a list of what I know right now:

  • Lyme Disease – Borrelia burgdorferi
  • Lyme Co-Infection Babesiosis – a malaria like parasitic infection
  • Lyme co-Infection Bartonella
  • Possibly Lyme Co-Infection Ehrlichiosis/Anaplasmosis
  • Candida Albicans – a fungal infection caused by yeast
  • 7 Strains of Strep Bacteria in my gut. Yikes!
  • Clostridium Spp Bacterial Infections (not as bad as C Diff.)
  • High C4a Level (3324), a measurement of a particular kind of complement.  Complement proteins work with antibodies to destroy pathogens.  This helps determine the degree of an infection.
  • Low CD57 + Natural Killer Cell.  Basically my immune system is shot!

I also have numerous antibodies showing positive on tests but I’m told that doesn’t mean an active infection.  However, after reading The Medical Medium book I am convinced I still have Ebstein-Barr Virus.

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.  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.

But I’m happy to say that all the infections I have (4+) are the CAUSE of my chronic daily migraine of 22 years.  Borrellia, Babesia, Ehrichlica, Bartonella, Viruses and more.  Treatments and detoxing have been allowing me many migraine-free days!  

My blog is purple and lime green to support migraine and lyme disease awareness.

If you have been diagnosed with MS, ALS, ADD, Rheumatoid Arthritis, Fibromyalgia, Neuropathy, Lupus, Crohn’s, Parkinson’s, Migraines or any Mental Health Disorder check out this questionnaire to see if you might have Lyme disease.  They see an LLMD to get property diagnosed.  

I hope you enjoy my blog.

Kim

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