My Lyme Journey – Part 4: Neuro Lyme: Insane in the Brain

Part 4 of an ongoing series about my journey with Lyme Disease AND CO-INFECTIONS.

In the end of Part 3 of my story, I was having terrible joint pain/swelling, intense fatigue. My integrative dr had told me I had Lyme in Fall 2016; She had also told me to see a Rheumatologist to rule out Rheumatoid Arthritis, Lupus or another auto immune disease which could be causing my symptoms too.

In December 2016, I went to see a Rheumatologist that my friend with RA had highly recomended to me.

I had filed out a new patent intake form when I had called his office to get an appointment, and I had described the profound fatigue I had been experiencing for a year and the more recent yet extremely painful joint swelling and pain in my hand, hips, knees, elbows and shoulder joints that got worse at night. But I was having some cognitive issues, I was as thorough describing symptoms as I should have been because I had and still have a lot of problems composing written communications, it was very hard to type words that made sense, I thought he would ask me to describe it in detail when I saw him in person.

When I went to my appointment I was shown into his office first before he examined me. He was visually scanning my intake forms on a computer screen on his desk. I thought he would ask me for more details but he never did ask me any questions.

I mentioned to the Dr I was there because my Integrative MD said she thought I had Lyme Disease, but had asked me to rule out RA. HE LOOKED UP FROM HIS COMPUTER, AND LITERALLY LAUGHED IN MY FACE. (*I say this in capitals because it was the first of many times this would happen over the next 6 -7 months as I became more ill…)

This distinguished Dr, the head of Rheumatology at the famous hospital I live by in West Hollywood,  said Lyme does not exist in California and there’s NO WAY I had it and that other dr who told me I had Lyme disease is crazy. I shook my head in agreement, she told me to take antibiotics too! Sheesh. I still did NOT believe I had Lyme, it seemed SO STRANGE I never heard of it either, and I certainly did not want to take antibiotics either.

He examined me and had a lot of blood tests done to see if I had any autoimmune issues. I went back to meet with him again to get my results. This follow-up meeting with the RA was in January 2017.

He told me my blood tests all came back negative, except a few, but he said the few indications I had were not enough to diagnose RA or any autoimmune disorder. He said I had OsteoArthritis and could come there to get cortisone injections in my joints up to 3 times per year.

I thought, does he even know I have pain and swelling in almost every joint in my body??? Did he even read on my intake forms that the pain became much more intense and the swelling increased at night and this was different than typical Osteoarthritis?

I still did not know what was causing the pain, and the pain was getting worse and worse.

As January 2017 progressed, I literally could not type some days, I could not move my wrist or hand for weeks at a time, my hands would be like useless painful claws. By nighttime, I’d have extreme pain all over my body, it came and went in different joints randomly but my wrists and fingers suffered the most. I was so abnormally tired too.

I am a very healthy person. I eat very clean, mostly fish and vegetables. I go for at least one if not two walks every day, I have done this for over 20 years because I want to stay independent and healthly, and walking helps me mentally and physically.

In January 2017, I noticed when I was walking sometimes my symptoms and pains would subside, but whatever joint(s) were swelling and painful that day always returned when I was done.

I started feeling like my daily walks were the only sign I was still functional. I became afraid of missing my daily walk because it really helped me think better, breather better and overall feel better. I felt the day i couldn’t make the walk anymore, was the day I was giving up. I have always had a strong will, and I refused to give up.

But in early February 2017 one Friday night after my daily walk, I came home and started feeling a tightness in my throat. It was so strange, I thought I may be getting the flu. As the night progressed, I started having these stabbing icepick-like pains in my ear, as time went on, they became stronger, felt deeper and came more frequently until it was non stop pain. That stabbing pains caused involuntary muscle contractions all over the left side of my face and throat.

I had had this feeling mildly over the past 6 months, but I had first experienced something similar to this pain 20 years ago when I had my wisdom teeth out and my lower left extraction became infected.

In the past, the pain  had come and gone though. It never stayed more than a few seconds. It had been gone for over 20 years but had returned 6 months prior, and had become more frequent as time went on because I recalled telling my mom about the stabbing pains in my left ear that would come and go. I never considered that it may have been connected to my mysterious joint pain/swelling, however.

That night in February when the real bad spasms and stabbing pain started, I knew I couldn’t live with this much pain for very long. The stabbing pains got better during the daytime but would come on strong as it got dark.

I found a description online for Trigeminal Neuralgia (TN) and it described my condition perfectly, except the description said TN can come and go – mine did not stop though. I was screaming out loud begging God to make the pain to go away. I found a web site with a forum for people suffering from TN, and i read a significant amount about the connection with TN and Lyme disease.

The sharp stabbing pains, and resulting cramping/muscle contractions did not stop all weekend. On Monday, I sent an email to the Rheumatologist I had seen in December and January. I said I was having this awful nerve pain and asked for a referral to a neurologist. I got the appointment with the neurologist but it was a few days away. I read that TN responded well to heat, so i got a hot water bottle and filled it with boiling water and I spent every minute with my face pressed against the hot water bottle because the heat really did relax the non stop spasms in my face and scalp.

I was scared to go to the neurologist because of the pain, I had no one to drive me and I just prayed the pain stayed away or stayed mild enough so i could get to the dr office and back.I actually brought my hot water bottle with me in a tote bag, just in case.

The neurologist examined me and told me I had trigeminal neurlgia. She also laughed t the suggestion my integrative MD had thought I had Lyme disease. I told her I read a lot about the connection between TN and Lyme, and I mentioned the joint pains and fatigue I had had also. She would not consider I had Lyme, she laughed at me like I was insane for even saying it. She told me I had TN and probably needed to take Tegretol for the rest of my life, an epilepsy medicine with heavy side effects that made me feel clumsy, off-balance, confused, dizzy and tired. The neurologist did not seem concerned by my sudden extreme pain, she just told me to take tegretol and come back in a month.

Since I could not tolerate the Tegretol and it did nothing to help me, I was still having icepick stabbing pains emanating from my ear so I decided to see an Ear nose and throat dr to see if anything was wrong with my ear. When I told her about the extreme pain I was having, she immediately ordered a full MRI of my brain and inner ears with and without contrast. She was shocked the neurologist didn’t do this.

The ENT Dr also numbed my throat and sinuses and examined me with her scope. She said my larynx was abnormally swollen and red. She suggested I take not one but two prescription antacid medicines.

I started to think I needed to try the antibiotics my integrative MD had prescribed for Lyme disease almost 6 months prior. So I filled the prescription for antibiotics, and started taking Doxycycline twice a day.

The nerve pain and spasms on the left side of my face started to decrease within a week of starting Doxycycline. Within 3 weeks, the nerve pain was almost totally gone. I also started to become sicker as the Lyme parasites started to die off and shed toxins, causing the classic Herxheimer reaction that people with Lyme know all about.

I went to get my brain MRI done at the end of February 2017 but I never went back to get the results until the end of June, because I became sicker and sicker before getting better when I finally started treating my Lyme disease.



This is Part 4 of a series of posts called “Sick of Lyme Disease” describing my experience with Lyme Disease.

Other articles in this series:




Do you have Lyme, &/or do you know someone suffering from Lyme Disease? I’d love to read your comments/feedback below.

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