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 drug 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 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.

Thankfully,  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 not a cure but a way to manage my daily migraines. 

Once my migraine pain was gone from my implant everything below my head starting hurting and kept getting worse and worse.  My head pain was so bad for two decades that I didn’t notice anything below my head. 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 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 (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 was told several times I did not need to see a Lyme Doctor. Because (1) Lyme doesn’t exist in California-FALSE. (2) The test your primary doctor did was negative 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.

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 which they call a diagnosis and give drugs to mask symptoms.

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.

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.

I was also diagnosed with Chronic Inflammatory Response Syndrome (CIRS) caused by mold. You can read about that here.

2017: 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.

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
  • All over burning pain
  • Electricity pain
  • Depression
  • Anxiety
  • Tremors
  • Memory Loss
  • See here for more symptoms.

If you have been diagnosed with MS, ALS, ADD, 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.  Read here about testing.

I hope you enjoy my blog.

Kim

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