Part 3 of an ongoing series about my journey with Lyme Disease AND CO-INFECTIONS.
Lyme disease is still relatively unknown in California. Lyme disease is often called “The Great Imitator” because it mimics so many other diseases and illnesses. Left untreated, apparently it can kill you. If you don’t kill yourself first.
Somehow I made it through the rest of 2015 with the ridiculous fatigue I’d had for almost year, which seemed to be getting worse. I was able to work around it for a while. Little by little I modified my work schedule to start to work from home more and more to avoid tiring myself out too much. Being self-employed, working less and passing up more profitable, more stressful projects meant my income started to decrease.
In June 2016 I started having intense joint pain and swelling in my hands. It started in my right hand and the first episode lasted a week. After the first week, the pain came and went in different joints. The pain and swelling got a lot worse as the day got later. By nightfall I was in so much pain. Every day, my wrist and hand would hurt and start to swell. My hands, wrists and fingers would start to swell more and more as it got later, until the pain was unbearable. I could not function like this – I could not bear the pain to move my hands.
Running my hands in hot water helped as long as I kept them submerged. It was hard to sleep when the swelling was so painful. Every time I moved in my sleep, I would wake up from the pain. For one week after, every day when I woke up, I was unable to move my hand or fingers. My hand felt like it was paralyzed, the tendons that normally make my fingers move that begin way up in your arm closer to your elbow were so inflamed they did not function so I couldn’t move my hands or fingers for the first hour or two every day. Then the pain would subside during the days and return at late afternoon and proceed to become more and more painful as it got later in the day.
I slowly stopped living a normal life. As the random pain intensity and duration increased, I started to feel very isolated and depressed because I had no one to talk to or commiserate with about this pain. I had no idea what was happening to me.
This pain was not like any Osteo Arthritis I ever read about, my pain was intense sudden swelling that feels like the joint is dissolving from the inside out. This feeling moved from joint to joint, thumbs, fingers, wrists, elbows, shoulders, hips, knees, feet, you name it. pain came and went randomly for the next six months. The intense pain mostly got worse as it became later in the day, until the nighttime pain was so severe I couldn’t function but sometimes the pain was omnipresent. The pain would stick around any particular joint(s) anywhere from a few days to a week or two and it could be so intense and then disappear the next day. Or it could stay for weeks. There was no way to know what part of my body would start hurting next, or how long it would last.
I also had issues with my fingers and toes turning white and burning with pain when I got too cold.
My feet had started hurting too. One day I work up in June 2016 and I could not walk. I stretched my feet and legs and took a week off of hiking but my foot pain was so intense and felt like it was getting worse, not better. So in June I also made an appointment to see a podiatrist.
This podiatrist was the first of several specialists I visited over the next nine months, to try to find an answer to a lot of symptoms/medical issues which I was experiencing. X-rays indicated I had heel spurs in my right foot. He examined my feet and said I probably had neuromas in the balls of my feet too. The podiatrist suggested I see a rheumatologist as this foot pain “can” be one of the first signs of RA or lupus…
In May 2016 I had a physical with my primary care physician and he had run a basic test for RA already, but when the results came back they were negative. I started to do a lot of google searches for my symptoms around this time and read that fatigue, swollen joints, and foot pain can be one of the first signs of Rheumatoid Arthritis.
A friend with RA who noticed the red swollen joints in my hands in June said my symptoms sounded like when she first started getting sick too, and she referred me to her rheumatologist. This friend mentioned that her first RA test came back negative like mine did, but there were other blood tests that I should take to be sure I did not need treatment for RA. I was just so tired, it took until October and me getting even sicker to make an appointment.
By the time I went back to my holistic dr in October 2016, she told me the blood tests she had run indicated my immune system was fighting something. In September, I had received the test results from the lab and felt like it was confirmation of all the fatigue I had had. My blood work showed my C4A level was extremely high. It had been tested back in Fall 2014 and was low back then. But when tested in September 2016, it was in the 14,000 range. (Normal was below 3,000.) There were a few other tests that indicated something was up in my body too, like my Eosiniphil Cationic Protein was really high too.
Up until this, no other tests had verified anything was wrong with me. The holistic Dr said she was almost positive I had Lyme disease and I also most likely had a lyme co-infection called Babesia. She explained Lyme disease to me, how it was first discovered in Lyme CT and the first cases reported were these kids all suspected to be having juvenile arthritis before it was found to be an organism called borrelia burgdorferi. The same ticks carry other diseases like babesia, bartonella, and the list goes on and on.
My holistic dr wanted me to take a blood test from a lab called Igenix but it was not covered by insurance. She said there were a many different specific tests for different parasites and infections, and the one test may not tell me anything and I may need more tests to get to the bottom of it. I declined because it seemed prohibitively expensive at $300 per test.
She also recommended I visit a rheumatologist to rule out Rheumatoid Arthritis, but she suggested that I start treating my Lyme disease with antibiotics. I was shocked, like, “Really?!” I could not beleieve that my holistic natural dr was telling me to take antibiotics!
She said, “Yes, I’m a Holistic Dr and I hate to prescribe them but it is the only thing that can get rid of the parasites in your blood”.
Parasites? In my Blood??? (Little did I know it could and would get into my brain and cause brain damage lesions and extreme pain!)
As I am writing this, I now have been on antibiotics for five months with no end currently in sight. (More to come on my course of antibiotic treatment in the next installments of this series. Please subscribe by clicking “Receive email notification for future posts” at the bottom of the page.)
I wish my holistic/Lyme literate Dr. had mentioned that oral antibiotics may not do it 100%: many people’s symptoms and pain return after discontinuing oral antibiotics; some Lyme patients need to get a port, PICC line, or central catheter to take IV antibiotics, and sadly, even all of that may not eradicate the parasites completely once they leave the blood stream and burrow themselves into into joints and organs. And eat your collagen and myelin coating on your nerves.
Maybe I could have avoided the pain that was still to come for me a few months later. But at that time, I did not believe in Lyme disease, I was very healthy, I ate all organic veggies and wild salmon, I hiked every day, I don’t eat sugar or gluten, I did not believe in Lyme! Or Babesia! I totally objected to taking antibiotics that would ruin my gut micro-biome. I was still worried I had RA.
After the holistic Dr who was also a Lyme literate MD told me I needed to start treating my Lyme symptoms with antibiotics, I didn’t believe her and I refused to take antibiotics.
I called to get an appointment with a rheumatologist who my friend with RA had highly recommended. The rheumatologist was moving his office and had no openings until December 2016. I had to fill out extensive intake paperwork and it was difficult for me to list all my symptoms. I could barely write out my symptoms. I tried to describe the random joint pain but also assumed he would take a more detailed history when I saw him in person.
During the last few months of 2016, I had severe fatigue and the joint pain was traveling all over my body and was more intense/painful than ever. My vision seemed to be getting really bad. I constantly saw “floaters” in my field of vision; my eyes went blurry and I could not focus after working for a few hours. My feet were killing me. I had brain fog, constant headaches, I lost the ability to communicate, I couldn’t put words together or recall peoples names anymore.
At night, I started to get sudden electric shock type of stabbing pains in my left ear and all over the left side of my face, that lasted a few seconds and this started to come and go more often.
As December 2016 approached, I waited to see the rheumatologist wondering if I had some sort of auto immune disease. I was so tired and zoned out and in so much pain, and couldn’t recover from any sort of stress.
This is Part 3 of a series of posts called “Sick of Lyme Disease” describing my experience with Lyme Disease.
Previous installments in this series: