Small write up on the following site is helpful. Lymedisease.org-Bartonella
For 6 years, the pain slowly crept in. Insomnia. I start losing balance. Migraines. Vertigo. Motion sickness. Confusion. My limbs became numb… then my face. Month upon month of doctors visits. No help. Slowly, slowly getting worse.
August 2015, a diagnosis – high titers of EBV and two strains of Bartonella. I started treatment in August 2015. By February 2016 things had improved. Insomnia gone. Numbness significantly less. Migraines far less frequent and less severe. Heart palpitations stopped. Vertigo no mo. Confusion and slurred speech is less. I’m happy! I actually feel happy again! What a lovely emotion.
Primary Symptoms (constant) 2010-2016
- Peripheral Neuropathy: numbness and tingling in my feet, hands & face
- Chronic muscle pain in my thoracic & neck (and I mean excruciating)
- Rib pain (see further notes)
- Joint pain (mostly knees and hips. Bartonella loves those joints)
Secondary Symptoms (come and go) 2010-2016
- Migraines (aura)
- Phantom movements (often thought there was an earthquake)
- Phantom smells
Heart palpitations & tachycardia
Agitated by too much stimulation
Vertigo & dizziness
Headaches that last for weeks
Frequent urination at night
Sensitivity to scents
- Feeling of ants crawling on skin
- Pain in shins
- Swollen lymphnodes
- Loss of balance (Astasia Abasia)
- Overall weakness (felt like I had a weighted suit on)
- Non-epileptic Seizures
- My head was so messed up, I also thought our house was sinking. I perceived it as tilting at about a 10º angle. I placed a level on a baseboard to remind myself it was level.
Symptoms for my illness started during pregnancy, a time when a woman’s immune system is compromised (this is to prevent the woman’s body from rejecting the fetus). It was during the 5th month I developed acute pain in my ribs (marked in red below). Because I was pregnant, doctors diagnosed me with costochondritis. The pain was so bad towards the end of the pregnancy that it hurt to lift my arms to brush my hair.
Post pregnancy I had psychological symptoms suggestive of postpartum depression. Anxiety, suicidal thoughts (I knew I wouldn’t do it, but it crossed my mind a lot), moments of rage, exhaustion, light sensitivity, decreased sex drive, insomnia, numbness and tingling in my extremities – pretty much the standard list of things new moms have. The pain in my ribs subsided a bit, but things still didn’t feel right. Again, I wrote it all off to having a baby.
Symptoms Get Worse…
December of 2012 I started to have noticeable (by others) balance issues. I felt really rundown and my eyes were having trouble focusing.
In January of 2013 the pain in my ribs started to become a nuisance. I could get through the work day, but the ride home on the train was very painful. With each passing month the pain increased (slowly but steadily) until I couldn’t sit in a chair at work for more than 15 minutes without being in excruciating pain. The numbness and tingling in my hands and feet became worse as did my balance issues, vertigo and confusion. I stumbled so often that I’m guessing a few people at work thought I was under the influence of something. In May 2013, I was walking to the train station in the morning and my face suddenly went numb. So I made an appointment to see my doctor.
Between June and July of 2013 I went through 3 MRIs, CT Scan, Ultrasound, 2 X-rays, over 100 blood tests and saw 7 specialists. My primary doctor suggested I might have Multiple Sclerosis or Cirrhosis of the Liver or possibly cancer. In the end, the doctor found nothing and at one point yelled at me that she didn’t know what else to do. Trying a different doctor, I had to beg for a referral to physical therapy and was approved for only four weeks. So I tried chiropractic on my own, which did improve my ability to tolerate sitting some, but in the end, I bought a fold out bed and put it in my cubicle at work so that I could lay down to work. It was embarrassing, but necessary to get through the day.
Two years and 11 MRIs later, my doctors were finding nothing, and I continued to struggle. I was exhausted, in constant pain, numb in my hands, feet and face and by July 2015, I started having seizures.
Once the seizures started, I was averaging a movement 2-3 times weekly. My family was terrified, doctors weren’t helping (I was told my symptoms were psychosomatic by doctors at Kaiser Permanente) and I was bedridden. I lost my job but honestly my greatest concern was that most days I struggled to walk. My legs simply weren’t working. I couldn’t drive, it wasn’t safe. My life had been reduced to being disabled, BUT without a diagnosis, I had no government support for disability.
As I read more, there are many things that happen in the body post seizure. ALT liver enzymes elevate which causes weakness. Also, electrolytes are imbalanced. If you have low potassium and/or sodium, you will be so weak you can’t stand. Coconut water is high in potassium and sodium. I recommend making your own electrolyte drink with coconut water or fruit and veggie smoothies made with coconut water.
I’m still angry at the doctors who diagnosed my symptoms as psychosomatic. Fortunately my sister suggested I might be late stage lyme and by the grace of all things holy, a mother at my son’s preschool recommended a doctor who specialized in complex cases. And so the journey to recovery began.
Over 800+ days with Kaiser Permanente doctors who found nothing, the private doctor I saw, within 28 days of my first visit, had found some things in his copious blood work. And I learned how immunocompromised I was.
Bartonella Rashes. I have noticed when symptoms flare, I often have a rash behind my ears.