Dear Stephen,
I am a 35 year old woman who was diagnosed with Charcot Marie Tooth disease at birth but have never properly been tested for it. Charcot Marie Tooth disease (CMT) affects the peripheral nerves and is a hereditary motor and sensory neuropathy. My mother was also diagnosed at the time of my birth with CMT. Prior to that she was thought to have polio. My symptoms of neuropathy were present from birth: my physical development was slow – I didn’t walk on time and when I did it was on my knees. I learned to walk on my feet later than most children. My mother, however, developed normally until the age of 3 or 4, developing walking skills at a normal age and was described as a normal child until that age. At the age of 3 or 4 her parents took her on a family outing to a wooded area in northern Ontario where she swam in a lake. Shortly after, she became very sick. It was described that she had flu-like symptoms and a high fever. When the symptoms subsided she was no longer able to walk. Polio was common at the time, which is what she was diagnosed with. It was only at my birth that doctors began to suspect that it was a hereditary neuropathy, therefore ruling out the polio diagnosis.
I am a 35 year old woman who was diagnosed with Charcot Marie Tooth disease at birth but have never properly been tested for it. Charcot Marie Tooth disease (CMT) affects the peripheral nerves and is a hereditary motor and sensory neuropathy. My mother was also diagnosed at the time of my birth with CMT. Prior to that she was thought to have polio. My symptoms of neuropathy were present from birth: my physical development was slow – I didn’t walk on time and when I did it was on my knees. I learned to walk on my feet later than most children. My mother, however, developed normally until the age of 3 or 4, developing walking skills at a normal age and was described as a normal child until that age. At the age of 3 or 4 her parents took her on a family outing to a wooded area in northern Ontario where she swam in a lake. Shortly after, she became very sick. It was described that she had flu-like symptoms and a high fever. When the symptoms subsided she was no longer able to walk. Polio was common at the time, which is what she was diagnosed with. It was only at my birth that doctors began to suspect that it was a hereditary neuropathy, therefore ruling out the polio diagnosis.
In addition to the neuropathy I have always known (poor balance/ trouble walking), I have recently begun to develop some unusual symptoms for CMT: hearing loss and ringing in both ears (more severe in left ear) diagnosed as tinnitus, facial tingling/ numbness on the left side of my face. I’ve had a number of hearing tests and an MRI, and was eventually sent to see a geneticist because the hearing loss could not be explained. Both my geneticist and my neurologist strongly believe that I have been misdiagnosed with CMT. In addition to the symptoms listed above, I have experienced:
• rib pain on the left side (off and on). I have had numerous tests for this but they were not able to diagnose the cause.
• early onset, unexplained cataract in both eyes
• digestive problems (diagnosed as Irritable Bowel Syndrome)
• severe neck pain and stiffness
• dizzy spells/vertigo
• recent spells of fatigue
• sleep apnea/snoring/heavy breathing
• lack of concentration
My mother and brother have both exhibited psychiatric symptoms. My mother has symptoms similar to schizophrenia, bipolar, personality disorder. My brother has had severe depression since before he was a teenager (suicidal by the age of 13). He had extreme fatigue (sleeping through the day), stammering, anger/mood issues, bad teeth and blurred vision. More recently he has had testicular pain and was diagnosed with hydrocephalus.
It has been suggested to me, given the story about the onset of my mother’s illness as a child that all of this could be related to undiagnosed lyme disease. The problem is, as you may already know, that it is very difficult to be tested and treated in Canada.
About a month ago, I started taking a cat’s claw, astragalus and teasel tincture given to me by a Toronto naturopath literate in lyme. I felt very sick for the first 4 days on the tincture: low grade fevers, chills, ice cold feet and hands, fatigue and terrible sensations that felt like bugs were crawling up and down my nerves. But, around day 4, I started to feel a difference in my feet. I first noticed it in the shower – my feet felt ‘stuck’ to the tub floor like suction cups, or as I described it to my husband then, ‘like a tree frog’s feet’. I didn’t know it at the time, but my sensory nerves were coming back to life. My world was turned upside down on day 5 when, for the first time in my life, I could stand freely and with balance.
It’s been about six weeks on the tincture (I’m now also taking banderol and microcidin for the suspected bacterial infection, and pregnenolone because my naturopath feels I have issues with my adrenal gland) and I’m feeling sick on and off, but seeing consistent improvements in my walking, balance and neck stiffness. I tried to self-test for lyme by purchasing an Igenex urine test #465, but the results came back negative.
Your thoughts on all of this would be very much appreciated. Thank you for your website.
Stephen’s response:
It is very good that you are experiencing improvements, irrespective of what the cause is, that is a good sign. Your condition could easily be any of several arthropod-transmitted infections, from lyme to mycoplasma. Since you have a long standing peripheral neuropathy I would highly suggest you try Lion’s mane tincture, which is very good at stimulating nerve regrowth, Chinese skullcap root tincture, and cordyceps capsules (3 grams 2x daily). These are now my favorites in reducing nerve inflammation and encouraging nerve regrowth. The tincture combination you are taking is a good one and I would keep on with it. The protocol I am suggesting is a long term one, 6 months to a year to really turn things around but you should notice some improvements within a few weeks – those herbs should act synergistically with the others you are taking.
It is very good that you are experiencing improvements, irrespective of what the cause is, that is a good sign. Your condition could easily be any of several arthropod-transmitted infections, from lyme to mycoplasma. Since you have a long standing peripheral neuropathy I would highly suggest you try Lion’s mane tincture, which is very good at stimulating nerve regrowth, Chinese skullcap root tincture, and cordyceps capsules (3 grams 2x daily). These are now my favorites in reducing nerve inflammation and encouraging nerve regrowth. The tincture combination you are taking is a good one and I would keep on with it. The protocol I am suggesting is a long term one, 6 months to a year to really turn things around but you should notice some improvements within a few weeks – those herbs should act synergistically with the others you are taking.
Stephen
I was just misdiagnosed at 42 and thought my whole life I had it including several doctors and then all the surgeries to try and fix it. Then today i had an emg and thet said i dont have it and neither did my parents who were both diagnosed in the 70s. I’m upset because i have all the symptoms since childhood and they get worse as an adult