Oh, the bliss I felt when someone (my angel Lyme-Literate doctor-LLD) finally helped me. I was sitting in his office with an eye infection, heart issues, severe headache, stick neck and joints, IBS from hell, muscle cramps, thyroid issues, raging night sweats, some serious irritability, fevers and chills, impaired memory and cognition and debilitating fatigue. Then, I got the gold standard of blood test panels from IGENIX for a million dollars-after the usual ineffective tests had failed me. After 3 tests-still happening back then-I was finally diagnosed with Lyme Disease. I was put on lots of antibiotics and supplements as well as other meds to help with thyroid, Lyme-grains and more. I was on the road to recovery! NOT. ☹
Why? Well, that is a question that can be answered differently by each individual Lymie. So many factors impact when or IF we recover fully. Truthfully, a Lymie would need a crystal ball to see inside her body to know what type of bacteria at which life-stage is wreaking havoc. She would need to know if her immune system is functioning which is necessary to fight Lyme-induced hell. She would also need to know the identity of all coinfections that were brewing inside her. She would need to know all of this within days on being bit. Given the low percentage of people sporting bullseye rashes to clue them in and the high percentage of false negatives with respect to tick blood tests, crystal balls are not easy to come by.
So, each of us has traveled a different winding path through our Lyme journey. For me, I clearly had late stage Lyme. I did not know, however, that my earlier bout 20 years prior had still been eating away at my insides. I went through the typical zillion misdiagnoses and miserable life quality of late-stage Lymies for years. So, being bit in the stomach may have been a twisted blessing in disguise. I at least knew, for sure, that I had bad bitten. When I finally found my LLD, he did all the right tests, including and immune panel. Unfortunately, the immune panel results came back after some of the tick screens. You need an effective immune system to make antibodies to show up in blood tests. Turns out, my earlier Lyme-the only thing strong enough to register positive this time, had decimated my immune system. I had “critically low levels” as many Lymies do, which made the already inaccurate tick tests pretty much useless.
After the year and half of heavy antibiotics and supplements and useless other doctor visits for all my related damages to my body systems, I started seeing the Lyme light at the end of the tunnel. I started feeling human-like the old Robin-for the first time in years. My LLD said “I was one of the lucky ones”. I remember he said I needed to stay on the antibiotics and I did not want to. I did stay for a while longer, and then I got off-too soon likely. MY LLD also been trying for over a year to convince me to do IGG infusions which had freaked me out too much to do. Then, as so many of us do, I started relapsing. But, some of the symptoms were not my typical Lyme issues I had learned to identify. Thankfully, I was finally sick enough to give in and begin Hizentra infusions-I will post about these soon! But, Lymies can NOT fight Lyme and coinfections with their immune systems alone.
My LLD and I are a team. I am blessed to work in a field where research is critical and have become really good at recognizing my different symptoms and working with my LLD to figure out which infection is currently throwing a temper tantrum. I have been riding the crazy coinfection roller coaster for the past 2 years now. My coinfection family includes Bartonella, Babesia, Rickettsia, Mycoplasma, and parasites. Unfortunately, the crystal ball was broken, so like many Lymies, there were discovered as each reared their ugly head. Every time I would come up for air, a different coinfection would push me under again. Here’s the thing-coinfections do NOT MEAN lesser infections. They are equally as dangerous and can make treating Lyme even more difficult-even if you have a functioning immune system.
There are so many coinfections that can be spread through a single tick bite. Each Lymie could have any combination of them which could also vary by where you live in the world. However, ticks like to hitch free rides on birds that fly all over the world, making it possible for these coinfections to exist everywhere! The blood tests are not very valuable given the different strains of many of these coinfections, often making a clinical diagnosis critical to a Lymie’s survival. Coinfections are not all bacteria either, meaning that antibiotics will not be effective at eradicating some of them. I will list some of the possible tick-borne infections that could be keeping a Lymie down.
There are at least 36 different species of Lyme bacteria alone including the newer discoveries of STARI, Miyamoti, and Tick-Bourne Relapsing Fever. There are many different strains of Bartonella and Babesia. Ricksettial type illnesses include Ricksettiosis, Anaplasmosis, Ehrlichiosis, Colorado Tick Fever, Rocky Mountain Spotted Fever, Q Fever, and Brucella. Mycoplasma has many strains other than the well- known Pneumonia that can be transmitted as well. Ticks can inject Tularemia, Treponema, Amoebas, and viruses such as newer Heartland and Powassan strains. Finally, the Lyme research is showing that many ticks are transmitting parasites which are living in biofilms with some forms of Lyme. These parasites include different types of worms, flukes and mites.
I will be blogging and showing pictures of my own experiences with coinfections and parasites to try and help people identify their own hell. I will also be sharing and vlogging about my Lyme-related immune dysfunction and treatments to spread the word. But if you have been dealing with coinfections different than mine, please comment and share as you may be able to help someone I can’t! It is crazy when you think about how many illnesses can be transmitted by a single tick. I did not list all of them by and means and it seems we are discovering new ticks and diseases almost weekly. Join our community and share this post to help others find our family so they may learn and maybe laugh a little along the way! If you are a newcomer, check out our previous blogs to learn about how Lyme impacts your body, causes gluten issues, makes pet sick and more. I also blogged and made a funny video showing how many doctors are keeping us sick by being misinformed. Get informed to get well! Visit us at Madlymies.com or on Youtube besides on Facebook. I got the Bartonella graph info from Lymedisease.org and they are a great resource as well!