Not all Lyme disease is created equal. And not all Lyme disease is only Lyme disease.
There are those who get bitten by a tick, get a bullseye rash, get a fever, see a doctor, get a test that comes back positive, take 14 days of antibiotics and are cured. Most doctors outside of Connecticut believe that’s what Lyme should be. And in an ideal world, that’s what all Lyme would look like.
The reality is that Lyme isn’t just Lyme most of the time. In many cases, there are at least one or two co-infections (a distinctly separate infection usually contracted by the same tick as Lyme).
I have several coinfections that we know about.
- Bartonella – bacteria
- Babesia – parasite similar to malaria
- 3 different viral infections
To complicate matters, it took 8 years to diagnose these 6 illnesses in me. So they have had the chance to invade every inch of my body.
The symptoms of the different infections can look similar. Sometimes head pain can be from Lyme spirochetes (spiral shaped bacteria) drilling into tissue and nerves. The doctor may prescribe a certain antibiotic to combat the Lyme. But Lyme is self-protective – it can hide and curl up into a ball and develop a shield (called biofilm) that can’t be easily penetrated.
When the Lyme bacteria hides, head pain might then be stemming from activity by the bartonella or babesia. Sorting out which infection is currently active at any given time takes expert knowledge – along with a little guesswork sometimes. Yep – I said guesswork, because there really isn’t a sure fire way to identify which infection can be treated at any given time.
That’s why you hear me say “we think” such and such a treatment will help whatever symptoms I am having right now. Because the reality is that we just have to keep pushing forward, changing treatment plans to fit the symptoms of the active infection. It can be infuriating! But we continue to make progress, it’s just slow progress that sometimes feels like we are moving backwards.
The last couple of months have brought on some exaggerated symptoms that have been a little scary. For several years I have had what’s called “air-hunger”. My lungs are fine, but I feel like I need more air. Recently, this symptom has gotten worse – waking me up at night.
One particular night, my husband stayed up with me as I struggled to get enough air. My oxygen level was fine, But I felt like I was drowning. I finally fell asleep (more like passed out), only to have my husband wake me up telling me that I was gasping for air in my sleep.
I have also gotten ice pick type pain in my forehead so bad that I simply fall to the ground. I can’t speak, I can’t move, I just lay there and wait for it to subside.
As I shared these symptoms, and others like tachycardia and increased neuropathy, with my doctor a few weeks ago, he stopped taking notes and listened more intently than ever. This is not normal Lyme. “I think we are missing something”, he said. I like that about him. He’s real and he says it like it is.
Basically he thinks the brainstem has been tricked into thinking something is wrong – so it is trying to force me to breathe and sending pain signals to my forehead to tell my body I’ve been jabbed in the skull, when really I can breathe just fine and my head has no holes.
So what causes that? Well, that’s the new game. We are looking at several things including heavy metals, mold, organic acids, other infections.
We don’t have solid answers just yet. But new lab work shows extremely high levels of mycotoxins. I will be taking some new medication and doing some additional testing; hoping to have answers and possibly a new/modified treatment plan in the next 2-3 weeks.
On the downside – this sucks. It’s more mess to wade thru and more damage to my body.
On the upside – we have more hope than ever before. Anytime I get testing that shows something is wrong, I see it as a good thing because we can know exactly what to treat and how to treat it. So as we narrow the scope on the mycotoxins, I am hopeful that some of the more severe symptoms will subside.
Then maybe, just maybe, treating the Lyme and tick borne diseases will be a little easier.
I don’t expect to be well overnight. As I am often reminded, I’ve been sick a lot of years, so it’s gonna take time for me to get well. But we have hope. And hope is good.