In August 2013, the Centers for Disease Control (CDC) changed its annual estimate for new Lyme disease cases. Previously, it was thought that 30,000 new cases of Lyme disease were contracted yearly. However, the revised estimate increased 10 fold to 300,000 new cases per year. This statistic has made Lyme Disease a genuine epidemic that should now be viewed as a public health crisis.
Sufferers of Lyme Disease and Charcot-Marie-
Tooth often share many commonalities about their disease: both diseases can go undiagnosed or misdiagnosed for years, the medical community is uninformed about these diseases, and there is a lack of viable treatments for those with the most chronic conditions. In addition, Lyme disease sufferer’s
can have severe neurological symptoms including peripheral neuropathy. Chronic Lyme disease is one of the most controversial conditions today. Many medical experts believe that a 28-day regimen of antibiotics
will cure the Lyme, but when patients still feel extreme weakness and fatigue, joint swelling, balance issues, memory loss and anxiety after the dose is complete,
it becomes obvious to Lyme-literate doctors that Lyme is in fact a serious disease. What’s important to note is that the long-term symptoms of Lyme actually mimic the symptoms of CMT!
Because of this, patients or anyone with a family history should be particularly aware of the increased health risks Lyme Disease or other tickborne illnesses pose for CMT patients, especially if you live in high risk states in the northeast and spend a lot of time outdoors.
Lyme Disease often presents a multitude of symptoms that mimic other illnesses, which is one of the reasons a proper diagnosis can be so hard to obtain. Lyme and other Tick Borne Disease’s (TBD) are transferred via the bite from an infected tick. Contrary to the popular misconception, a red bull’s-eye rash does not have to be present for a person to have Lyme. Less than 50% of infected Lyme sufferers noted the presence of a rash when diagnosed. The bacteria or spirochete is called B. burgdorferi, and when it disperses through the blood stream its corkscrew shape burrows into human tissue, infecting joints, the nervous system tissues, and even the heart and brain. Because this bacterium doesn’t follow a familiar pattern, immune cells have no way to identify the invaders. Expert researchers at the CDC have some preliminary evidence that the bacteria can continue on, dead or alive, in human even after a 28-day antibiotic regimen.
Some of the first Lyme symptoms may include a flu-like condition, with fever, chills, headache, stiff neck, achiness, and fatigue. Other
symptoms can include pain in various joints and
muscles, neurological problems, heart involvement, problems with vision or hearing, migraines, low-grade fever or other symptoms. Lyme disease is often mistaken for other illnesses since the symptoms often mirror other medical problems, such as multiple sclerosis, arthritis, chronic fatigue syndrome, lupus or Alzheimer’s disease. In some cases, Lyme disease patients can
become paralyzed and/or comatose. Lyme and other tick-borne disease symptoms may come and go and be replaced by new symptoms. Symptoms may be subtle or pronounced.
It is critical that CMT patients are hyper vigilant when outdoors in high-risk areas You should wear tick repellent clothing, especially clothing treated with permethrin, an insecticide that repels and kills ticks. You may spray your own clothing with permethrin (good for six washings), or purchase pre-treated clothing (good for 70 washings) from a number of well-known clothing companies. EPA-approved insect repellent can also be applied to exposed skin for added protection. Light-colored clothing makes it easier to spot ticks. Wearing long pants, long-sleeved shirts, and a hat are helpful. Walk in the center of woodland trails, and by all means avoid walking along deer paths.
After any time spent outdoors, check for ticks while you are out and as soon as you get back. Showering is also helpful in removing unattached ticks from your body. Remember that some ticks are extremely small and some almost impossible to see. Putting your clothing in clothes dryer at high heat will kill ticks in about 30 minutes.
The neurological side effects of Lyme disease for anyone with CMT could be devastating, even lethal. If you think a tick has bitten you, go see your doctor immediately. The best hope of beating the diseases is a rapid diagnosis and prompt treatment. Remember, the medical community is as similarly uninformed about Lyme disease as they are about CMT; this means you need to make sure that you advocate for yourself when seeking diagnosis and treatment.
For discussions or to share your Tick bite or Lyme experience, visit Inspire CMT Community. *Source: TBDAlliance.org, CDC and, Prevention.com
I’ve spent days searching for why lymes disease is lethal to people with charcot maries tooth. I was diagnosed with Lymes 2 years ago and cmt runs rampid in our family. Can anyone help?
Hi Sheila,
I have had Lyme for about 30 years now, and CMT has been running through the women in my family for generations. I would also like to know why it’s being said that the two illnesses are fatal. I hadn’t heard about that. (As if one disease wasn’t bad enough!)
Dear KFM
I was going to University in Canada when I came down with a sudden bladder infection then a 104’F fever. I was in the hospital for 5 days of Intravenous antibiotics then dismissed. That was 2003 I was officially tested in a few ways in 2010 and found out I was majorly infected with Lyme which was now chronic and killing me and nasty co-infections. Please seek out some alternative treatments for the bugs as they are still damaging you I am sure. The bugs love connective tissue, bones, and they only ever circulate in the blood every 4-6 weeks then back into hiding and feeding off our living tissues.
I was diagnosed with “acute” Lyme back in the 90s and a couple years later I was diagnosed with CMT. I swear I still feel the effects of Lyme in my cognitive abilities, joint pain etc. I was diagnosed with CMT through EMG/Nerve Conductions and family history. To this date all genetic testing has not shown which type I have. I do not believe that all cases of Lyme can be cured with a simple dose of antibiotics. I was put on amoxi for 2 weeks, 2 weeks!!! After that every doc I have been to simply dismisses it. I don’t think it made my CMT worse – thank goodness, but it is an awful disease.
I went misdiagnosed for 16 years ~ first Lyme, then Lyme arthritis, fibromyalgia, then multiple sclerosis- after a pyloryplasyty, as my G.I track was paralyzed, and an infiltration I.V. that went wrong, I lost my footing and fractured my neck, and this pierced my right lung.jumping through
pulmonary specialists, bone specialist, I had the first doctor ask “did the bones in your feet always look like this or is this since the accident?” I was truly confuse: he turned me on to u-tube with folks who have”Charcot-Marie tooth Disease… I recognized folks in my family that had this type of look,
I then went to my neurologist , she said we needn’t run anymore tests, as now I have drop foot in both legs, she sent me to ,Virginia Prothetics, where I had 2 “AFO’s” specifically designed for me
after training I hit the ground running-and never looked back :))) It was easy as Im a skier and always luved my ski boots. The afo’s are making up for the muscles I am losing in the front thigh.
I practice yoga everyday MBSR for pain -I take enzymes algae, vitamin d with magnesum , and neurotin at night to aid in restful sleep-its been a very long haul, however-Im happy I didnot give up-I am grateful there is a name , aids and doctors (though you have to dig!!) to finally be told “YOUR NOT CRAZY_YOUR NOT Bi-POLAR, and your not drunk !!!” as I fall down a lot-you have “CMT”…. most in my family laugh it off-as we are lovers of country music/lol
Thanking you kindly-
CMGraff-
p.s. dont let the medical community tell you your depressed, when your not, I was desperate and would have worn any label to have any Dr. help me- “DONT” do this you could get very sick from the slew’s of anti depressants they will put you on,not to mention trial studies, and horrific side effects ;(((
Hi I have today read the excerpt from your post and I have felt a need to share it with a friend she has Lyme’s disease and I have CMT we are very similar and have been discussing this factor over a period of time. I was diagnosed late in life and am now 75 years, my legs are completely gone and now I feel that my arms and hands are going away now. It is hard fighting your body all of the time and my friend has the same sort of fight we are both, fighting, both tired, both determined that we will fight it to the end. My friend is a farmer and I volunteer at Vinnies over here, we are both putting in long hours and won’t give in at all. To both of us it is the only way and have both been active all of our lives until our differing ailments hit us but are now both united in our fight. I have also got vision problems these terrible floaties and spider webs, body and arm tremors, I have to wear orthotic braces and knee braces and it looks now that I will have to wear a thumb brace as well. But the end is not yet as my friend we will fight to the end. Cheers.
Thomas I know your diagnosis is CMT but it sounds like your vision problems could be Bartonella!
I and a friend who has Lyme here in Australia and myself with CMT have noticed the closeness of our diseases and we are in constant contact I have just sent this via email to her. we shall now chat over this news cheers Thomas