Life With Lyme

Since it is Lyme Disease Awareness month, I decided to write about this disease that has taken over my body and my life over the past few years. **Disclaimer: I’m going to be very transparent and brutally honest.**

Doctors don’t tell someone with cancer, “You are just depressed.” or “No more testing for your symptom of the week.” Or my personal favorite, “Just get more sleep.”I would hope that cancer patients don’t get told, “Well, you look healthy so I am sure you are fine.” Or “It can’t be that bad, ’cause you look great.” Who would say that to someone suffering?! No one. I have heard that not just once, but more times than I care to remember. I don’t have Cancer, but I have Late Stage Lyme Disease and I believe it is time for the medical community to take it just as seriously as Cancer. Lyme Disease is devastating and it kills. 

The diagnostic tests for Lyme are terrible and extremely unreliable to say the least. Even though it is the most common infectious disease, there is currently only a handful of labs that offer a reliable test. (IgeneX is the best from what I have researched.) It is expensive, but to Lyme sufferers it is totally worth it to have lab paperwork that clearly shows that Lyme is present and active in the body.

Borrelia Burgdorferi is what causes my pain, immobilizing fatigue, tremors and neurological symptoms. It may have a funny name, but it is unbelievably damaging to the body even though my face may not reveal the pain, my make-up may help to conceal the dark blue shadows hanging under my eyes and lipstick adds color to my normally ashen face. In other words, most days I don’t really look sick. I have read of Lyme patients that have put up with it for 15-20 years or longer and they are still suffering from this torturous disease.  Lyme disease is seriously misunderstood, but it shouldn’t be. There has been opportunity for the world to learn about it, but instead, doctors have turned a blind eye. Lyme awareness is slim to none in most states. Some doctors still don’t believe that Chronic Lyme Disease exists – they don’t even acknowledge it! If you would like more information on the political issues surrounding CLD, the movie “Under Our Skin” is a great documentary, that not only gives personal accounts of the illness, but explains in detail the controversy surrounding this mysterious disease.

From my perspective, much of the confusion surrounding this growing epidemic lies in the fact that there are no definitive answers and in some cases, there isn’t a clear end. Most of the questions I get pertain to when my treatment will be over or when I will I start getting better. Or as my girls ask, “When are you going to be yourself again?” I think that means, when are our lives going to get back to normal? It’s a hard question for me to answer. Actually, I can’t answer it. I have no idea. Chronic Lyme is a very complex, confusing and terribly frustrating disease. Even after successful treatment, there is no guarantee that it will stay that way.

IV treatments
My daily supplements and meds

The bacterium has a mind of its own. It’s a shape shifter. When the bacteria is in the spiral shape (spirochete), it can drill into organs and joints or go in and out of the brain causing devastating effects all over the body. But when treatment starts it goes into a cyst or even a granule form where it creates a bio-film around itself that protects it during treatment. Then it hides and survives in the lymph nodes and joints where it will lie dormant until treatment is done. Eventually – even years later,  it can start reeking havoc on the body once again. It damages the immune system so severely that the immune system is completely compromised. A Lyme body is much more susceptible to toxins and viruses than a healthy body because of the compromised immune system, which may explain why sufferers have 50+ symptoms.

Spirochetes magnified under Dark Field Microscopy

If, by chance, you beat the odds and are lucky enough to receive an accurate diagnosis, find a doctor that will treat you, have the money for the treatment (insurance usually won’t cover long-term antibiotics and definitely not alternative methods), the treatment works and there is successful eradication of the organism – even then there could be longterm, irreversible damage. It is truly a maddening illness. Sadly, it is not surprising the number of suicide related deaths among CLD patients. The diagnosis feels like a lifetime sentence.

I don’t think the general public realizes how serious tick-borne illness is and maybe, most importantly, how easy it is to contract. Fifty percent of ticks have some form of disease bearing bacteria in them and they are hungry. It only takes one attached tick – even if it has only been attached for a short time, to transmit bacteria. There is about a 1-2 week window to discover it or the bite and get anti-biotic treatment. Put it this way, if you thought you had an insect bite that was hardly bothersome or noticeable, would you go to the doctor for that? Nope! Neither did I. Many people don’t get the severe symptoms until it is too late to do the quick antibiotic treatment. It is a common misperception that the tick will be visible, will cause pain or will instantly cause a big red rash and flu-like symptoms. Sometimes it does happen that way, but not always. That is why prevention is of the upmost importance. If that 1-2 week window of opportunity passes, welcome to my world. It is incredibly hard to get rid of this bacteria and the symptoms only get worse over time.

During the height of tick season, ticks are in the “nymph” stage and can look smaller than a poppy-seed. In other words, they are very easy to miss. Many Lyme sufferers never saw a tick and don’t even remember being bitten. I didn’t. Nor did I have the infamous “bullseye rash.” I have never been a fear-monger and I’m definitely not trying to scare anyone, but I think I would be doing a horrible disservice to my friends and family if I didn’t let everyone know how to prevent tick-borne diseases.

Go to this link and it will give you clear instructions on how to keep from getting bit from a tick and what to do in case you find one attached.  Click Here ——> Prevention

Can you find the tick in this picture? (There really is one!)

I admit that I really didn’t want to write a detailed post about CLD. My husband wanted me to. I’m actually getting sick and tired of talking about, thinking about and researching Lyme. I am writing this at 3am from a place of deep physical pain and fatigue. A place in which I have to be somewhat absent in my daughters lives because of this ridiculous illness. A place where I can’t give my husband one hundred percent of myself. A place where I don’t ever know from one day to the next just how bad my symptoms will be and what I will and won’t be able to do in a given day. A place from when I am asked how I am doing, I have learned to just smile and say I’m getting better because it’s easier than explaining all of this.

I am so weary of having a great day and being physically able to do more than one activity to just end up paying for it the next day and barely being able to lift my head off the pillow. I hate that my “normal” is going to sleep in severe pain and waking up in severe pain. Many nights I don’t sleep more than a few hours due to the discomfort. Often my joints feel like they are on fire. My muscles continually ache and are so stiff I can’t stretch or move very well. In the mornings my body feels so heavy and my feet too sore to take one step and I fall back into bed hoping that my family will get by without me a few more minutes. My left eye occasionally gets swollen, so my eye stays partially closed for periods of time. I have constant muscle spasms, headaches, light and sound sensitivity, heart palpitations, trembling/tingling/numb hands and feet, memory problems and slow thought processes. It is extremely difficult for me to do simple, everyday things like going to the grocery store where decision-making is almost impossible. I try not to go more than once a week because it is just too much. I feel like I have been taken out of life for the time being. My IV treatments alone total too many hours and moments of living that I missed, not to mention the years that have been hindered from participating in my own life.

My daughter had her first “real” elementary school field trip last week and I was going to go with her. I even signed up weeks in advance to go as a parent volunteer because I was determined that this illness wasn’t going to keep me from the important things in my life. But as the day got closer, I realized I had spoken too soon. There was no way I would be able to be there. Thankfully, Ryan was able to go in my place. He and Chloe had a great day together exploring nature and finding tadpoles and lizards. I am thankful that he was able to go. I am happy for that. But I am not happy that this disease continues to steal moments like that away from me. Like many of my friends and family members, I am also asking, “When will it end?”

“Uninvited Company”
 By DeAnne LeBlanc

When the world sleeps
I do not
There is a heaviness in my bones
Movement is a loathsome task
I have a constant itch – under my cracked skin…
But I can never scratch it
The ache the ache
It radiates
Throughout every muscle and joint
My brain – a balloon of fog and mud
Floating untethered to my neck
Thoughts come slowly – if at all
My mind continually bouncing bouncing
Bouncing words
Meaningless words
Like an aimlessly thrown rubber ball
And the forgetting – oh, the forgetting – 
Forgetting what I just saw
I yearn and beg for the morning
A morning in which I will awake to being me
Just me
No longer greeted by misery
Because he is not welcome here
He has been the most dreadful company

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