I am given recommendations every day by well meaning people who can’t understand why I’m still sick. I appreciate their love and care, but it can feel like they think this complex disease is easier to treat than it actually is.

If you haven’t been in the trenches (or lengthy discussions) with someone who has chronic Lyme, this post is just as much for you as it is for the person who is sick and beating their head against the wall trying to find the key to managing their illness.

The issues of Lyme disease are so complex that it really shouldn’t be called Lyme disease. I’ve been calling it Lyme+, but realistically, Lyme is a small piece of a much bigger picture.

Richard Horowitz, M.D. uses the term MSIDS (Multiple Systemic Infectious Disease Syndrome) to outline this sickness. This is his 16 point MSIDS roadmap:

Click here to read the full text: MSIDS Roadmap

I’ve been pouring into a book called Toxic by Neil Nathan, M.D. He digs into the multiple toxicities (MSIDS #4) that plague a subset of severely sick Lyme+ patients.

The #1 takeaway from this book is that even for doctors, the issues of just this one component of Lyme disease can be extremely difficult to sort out.

One minute, you’re dealing with extreme symptoms of a specific infection, the next minute symptoms of mold or lead or carbon monoxide toxicity overwhelm the body and force an already suffering person into a physical state of extreme pain and sickness. In my home, we call it a crash.

These are the hours, days or weeks I spend curled up in bed with the blinds closed and the blanket over my head.

To understand toxicity in an already severely compromised body, you have to be willing to set aside your thoughts about what toxic means.

Toxic simply means something poisonous or harmful. For most people, that means something extreme – Flint, Michigan and their lead poisoned water or asbestos when renovating an old house.

We are exposed to bacteria, viruses, and chemicals every day. Our bodies are designed to combat these with an immune system that destroys the bad things encounter.

Those of us with Lyme+ have severely compromised immune systems. Our bodies get to a point where the immune system sees nearly everything as bad… sometimes even helpful, natural remedies and supplements.

This is the case with me. My body recognizes that it needs certain things to help it heal, but it sometimes sees those things as toxins.

My doctors have a specific method for identifying what my body needs right now, this minute. During one visit, they identified that my body needed charcoal to pull out some of the toxins (I have high levels of lead and mold specifically). That day, my body was happy to have the charcoal. The next morning, I mixed the charcoal and began to drink it. I suddenly found I was gagging and nearly throwing up.

Why? My body decided at that point charcoal was a toxin. In less than 24 hours, my body changed from wanting charcoal as a helpful remedy to treating it as a toxic substance.

In Toxic, Dr. Nathan outlines his focus of toxicities in his sickest patients. These include:

• Mold *
• Bartonella *
• Mast Cell Activation Syndrome *
• Porphyria *
• Carbon Monoxide

* These are active issues we are working on in my body now.

He outlines these issues in the first 7 chapters and then spends the next 13 chapters outlining the complicated rebooting of various body functions, at the right time and in the right order, which is different for everyone and may change every day.

This is not easy and it is not quick. It requires recognition of a constantly changing system. It requires constant fine tuning and regularly shifting direction.

And let me say again – this is ONE complex piece of an extremely complicated sickness.

To those who have given me recommendations:

1. From the depth of my heart, I am thankful that you are thinking about me and wanting me to get better – it shows a great deal of compassion and care that you are trying to help.

1. The therapy or remedy you recommend, although well intentioned, can sometimes do more harm than good. If I don’t take your recommendation, don’t take it personally or think I don’t want to get better.

Those of us who are living with this complicated sickness have dug in for years studying anything and everything that could possibly help; we are working through the maze of information to define what works best for us in any given moment.

To those living in this hell we call Lyme:

1. It’s complicated. You know it. You live it. Don’t stop trying and don’t give up.
2. Trust your gut and listen to your body. If something doesn’t feel right, it probably isn’t right for you. There’s a reason you don’t like certain foods…maybe your body doesn’t react well to it.
3. If your stuck and feel like you are on the wrong path – research and reach out to others who are in the battle. I don’t have all the answers and I won’t pretend to know what works best – but you can always reach out to me if you need someone to listen or you want some advice.

And just in case you need a little encouragement, I give you For King & Country – It’s Not Over Yet (written for their sister who has Lyme)