By Barby Ingle, PNN Columnist 

For me, treatment with ketamine was life giving and lifesaving. I started ketamine infusion therapy in 2009, flying back and forth to Pennsylvania for treatment at Drexel University Hospital. My doctor there, neurologist Robert Schwartzman (now deceased), did much of the initial research on ketamine as a treatment for Reflex Sympathetic Dystrophy (RSD), also known as algoneurodystrphy or complex regional pain syndrome (CRPS).

I was on the ground floor with ketamine as a pain treatment, and helped bring it to Arizona with providers like Drs. Steven Siwek, Eric Cornidez, Natalie Strand at the Pain Centers of Arizona and Freedom Pain Hospital, to name a few.

One of my favorite places to go was Ketamine Wellness Centers (KWC), which operated a nationwide chain of ketamine clinics until it abruptly shut down last week. I knew many of KWC’s staff members at their Arizona and Florida offices.

I was patient zero for KWC. I remember sitting with Gerald Gaines (now deceased) and Kevin Nicholson, the current CEO, and sharing with them how ketamine changed my life. I asked them to look into ketamine and start a clinic. They did. Kevin built up the business and eventually opened 13 clinics in 10 states before recently merging KWC with another company, Delic Holdings.

The merger hasn’t worked out due to financial issues. The clinic closures significantly affect access to care for chronic pain, depression and mental health in the communities they served. KWC was one of the only places that treated both pain and depression, using ketamine in conjunction with other modalities.

As a patient, I have been through clinic closures before and providers stopping their ketamine treatment for various reasons. Upon reflection, I have been to more than 10 clinics and had close to 20 providers since starting in 2009. It is scary to think that thousands of patients like me have to start the process all over again, but having been in this situation before, I know it can work out.

My message to the former patients of Ketamine Wellness Centers is that there is hope. It may be harder depending on where they live, but other options exist. I plan on getting the same treatment that I have since 2009. I was asked how to go about finding a new ketamine provider by another patient. My response is this:

1. Know your ketamine protocol and how it works for you

2. Call ahead of your consultation and say, “This is what I had. This is what I want. Can you do it?”

3. Don't settle for less. There are many ketamine providers now. Find the one that is a fit for you.

Getting this treatment is very personal, and you need a feeling of safety, comfort and trust. It is not just about getting your IV hooked up and going from there. You should be exploring your options, just like you did the first time with KWC.  Now you have experience and know what ketamine therapy is like. 

When I got this treatment for the first time from Dr. Schwartzman, my entire life changed for the better. I went into the hospital in a wheelchair. Seven days later, I walked out. It's helped with dystonia, strength, balance, coordination and more. The most significant area of success for me was the burning fire pain. I strive never to have that pain again. Receiving ongoing treatments helps me live with my daily chronic pain issues. 

I received my latest infusions at the Ketamine Wellness Center in Tucson a few weeks ago. At the time, I had no idea that KWC was about to shutdown. I know it's a shock to all of us former patients, and I'm worried about the employees and where they will go. Their knowledge and experience will be welcomed at other clinics.

Part of the problem with KWC is that they expanded too quickly when they merged with Delic. Ketamine treatment is not a cash cow for providers, but they can make a good living and help thousands of patients who rely on ketamine to relieve their pain, be it mental or physical.

I hear that there will be lawsuits due to KWC’s abrupt closure and lack of notice, the inability of some patients to receive their medical records, employees who have not been paid correctly, and other challenges that have come to light. This will all be sorted out. It will take time, but we already know it is worth the time, effort and energy to ensure we can receive the life-giving treatments. 

I still need to receive my medical records from KWC, but I have all of my records from other providers and have changed my treatment protocol. I am already in talks with new providers. I don't have time to wait around.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com