Help Stevie Nistor beat Chronic Lyme Disease

Hi there.  I'm Stevie Nistor and I'm a drummer from Detroit, MI.

After 13 years battling chronic fatigue, daily headaches, and now joints replaced due to Lyme related arthritis (see photos below), I’ve been diagnosed with Chronic and Neurological Lyme Disease. Friends in my close circle know that I’ve had these problems, but in the last five years I’d stopped talking about it. This after getting no answers from general practitioners and trying every alternative form of healing I could. At a certain point it felt like I was just making it worse and, having no diagnosis, I figured I was just weak and had to face life as an uphill climb.

Now that I have had a joint replacement due to arthritis and am due for another, I recently decided to see a holistic medicine doctor. They have diagnosed me with Chronic Lyme. As crushing as this diagnosis is, considering my most energetic years are behind me (I’m 40), I am relieved that I now have an explanation and a path to treatment.

I live a very, very simple life on a minuscule budget. The main problem here is that no insurance companies cover anything having to do with Chronic Lyme. That means I’m looking at at least two to three years of very expensive treatment, completely out of pocket. I can’t even afford one month of treatment, let alone years of it.  I hope that, with treatment, in three years I’ll have more energy to generate more income to treat myself or if everything goes right, I'll be free of these symptoms.

I’ve lived with extreme fatigue, headaches and nausea every day, but accepted it as normal. The thing right now that I’m most afraid of is the arthritis.  60% of Lyme sufferers develop arthritis.  I’ve had pain in the big toe in my left foot for seven years now. So much so that they discovered arthritis had eaten the joint out of it. Now the same is happening to my right foot, my bass drum foot. The doctor wants to replace that one too but I’m holding off. These joint replacements only last 10-15 years before they have to fuse the entire toe into the foot.

I can spend the rest of my life tired and with a limp, but what I can’t do is have this horrible thing enter my hands. I MUST be able to drum. To be brutally honest my drumming is my will to live most days. 

This is all coming less than two years after my youngest brother developed a brain tumor and my mother dyed of a cancer called Subcutaneous T-Cell Lymphoma. It's fair to say that it’s been a very rough few years and the stress certainly isn’t helping my condition.

If you’ve followed me online you’ll see that my favorite physical activities are swimming and lifting weights. The problem is I’ll have a good three weeks at the gym followed by four weeks of unbelievable fatigue. That’s why my updates about exercise seem so random and inconsistent.

Standard Western docs do not prevent diseases such as this, they only treat them. When I asked the doctor “could arthritis get into my hands at an early age too?” she said, “possibly.” When I asked what we could do to prevent it, she said, “nothing, really. You can treat the pain with NSAIDs.” I reminded her that I’ve had a history of stomach ulcers (which are exacerbated by NSAIDS) and her response was, “You’ll have to decide which is worse.” Brutal.

This is what led me to the holistic doctor who discovered there was much more going on than arthritis: Epstein Barr Virus, Borrelia and Bartonella Bacterial Lyme co-infections, and an overgrowth of Candida bacteria. 


Because most people are not aware of how pervasive and debilitating my disease is, permit me to paint a fuller picture. Here are the symptoms I’ve had since 2007, increasing every year:

· Chronic Pain – this pain travels through the body, because it is tied to the Central Nervous system. A lot of the pain resides in my neck and upper back, and also jaw pain and tightness that makes it painful to eat or to work out at the gym. I have good dental hygiene and my x-rays look good, but I have daily tooth pain.

· Restless Sleep – I’ve had sleep problems since 2007. I’ve been on CPAP machines, then BiPap machines, and finally a BiPap ASV machine. My last one was purchased in 2015 and costs $3,000 and I now need a replacement. My insurance will not cover medical equipment. It’s all out of pocket expense. Also, medications for restless legs, also a feature of Lyme, are not covered by insurance.

· Fatigue – Every day since 2007 I’ve woken up feeling exhausted and unrested, even with total compliance with my breathing machine. Some recent supplements my holistic doctor has prescribed (not covered by insurance) have helped in some regards, but without addressing the Lyme it’s nearly pointless. Like putting a bandaid on a missing limb.

· Short Term Memory – Lyme attacks neurological function. I forget things said in conversation. I frequently start driving to a location and realize that I’m going to a different location then where I intended to go. This is embarrassing to admit, but it’s happened enough times for me to be concerned.

· Speech Problems – I frequently trip on words and am frequently asked, mostly by people who don’t know me personally, things like, “are you following me?” or “is this making sense” or “it doesn’t seem like you get it.” This is so embarrassing to me, not because I’m the smartest hammer in the toolbox, but because I’m not a dummy and I usually am one step ahead of what’s being told to me. The problem feels more like there are constant wrenches being thrown into the gears of my thought process which results in me being at a loss for words.

· Every day feels like I have the flu or a low-grade temperature, even though I am not dealing with a flu or cold.

· Decreased muscle function – I have a hard time in the gym do to muscle weakness and hormonal problems due to the Lyme infection.

· Cardiovascular (heart) – I experience Tachycardia and Bradycardia, (fast and slow heartbeat) with palpitations and the feeling of my “heart skipping a beat” at least five times a day, sometimes more and in rapid succession.

· Nausea

· Dizziness

· Hair Loss - No one in my family is bald and I started losing my hair at 37. I’ve been using a number of products to hold onto what i have but the clog in the drain gets bigger every day.

· Sweats (cold and hot)

· Hormonal Problems - My hormonal balance has been off for the last ten years. I’ve started some replacement therapies but they won’t be able to level off until I get rid of the Lyme infection.

· Bone pain – part of the chronic pain, but a deeper pain than regular joint pain. Obviously, my arthritic joints and the one that has been replaced are constantly sending feeling of “cold fire,” from my toes to my spine.

· Ringing in ears - I’ve had my ears tested three times since the onset of symptoms and they’ve all come up saying that I have “above average hearing.” And that it’s “odd” that I have such bad tinnitus because of the lack of visible and demonstrative damage. I know, I’m a drummer, but I’ve protected my hearing since I started playing.

· Tremors – I frequently have muscle and organ spasms every day.

· Poor digestive absorption - Another feature of Lyme, along with having Celiac Disease.


Treatments and Care (2-3 years):

· Office visits and blood tests.

· 20 different pharmaceutical-grade vitamin supplements daily.

· 9 different naturopathic supplements daily.

· BioIdentical Hormone replacement.

· Ozone shots at arthritis sites.

· Ozone insufflation treatments to reduce inflammation and help kill the bacteria that causes Lyme.

· Prescription medications not covered by insurance.

· IV Antibiotics and vitamins.

· Orthotics for my arthritis.

· BiPAP/ASV "Sleep" Machine.

· Probable experimental therapies.


Justin Bieber has recently announced that he suffers from Chronic Lyme and Epstein-Barr (called “chronic Mono” here), just as I do.  If someone of Justin’s status and resources is having a hard time with treatment imagine how it is for those of us without.

https://www.healthline.com/health-news/justin-bieber-lyme-disease#Getting-help-for-persistent-Lyme-symptoms



Here are some more links to help understand what Lyme is:

https://www.gofundme.com/c/blog/pay-for-lyme-treatment 

https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme-disease

https://www.ilads.org/research-literature/lyme-101-series-at-iladef/



Here are some post surgery pics of my joint replacement (viewer discretion is advised):


Two weeks after joint replacement:




Two weeks after surgery:




Right foot joint.  Will need to be replaced in the next one to two years:




This is called "spurring."  It's bone buildup at the site of arthritis that cause grinding and inflammation: