Cervical Dystonia and Lyme

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Regular Member

Date Joined May 2010
Total Posts : 26
   Posted 5/25/2010 2:08 PM (GMT -7)   
Hi for the past four years I have been sick with neurological lyme. However, it wasn't until about a month ago that I found out that lyme was the reason why I was having so many health issues. One of them being cervical dystonia. I just started treatment and I wanted to know if anyone else had cervical dystonia and ow the treatment for lyme effects the dystonia.

Veteran Member

Date Joined Aug 2005
Total Posts : 4297
   Posted 5/26/2010 3:43 PM (GMT -7)   
Hi Shelly,
I really don't know much about cervical dystonia but I would guess it's another lyme symptoms due to an overload of toxins.    This article may help:
  • Cervical dystonia, or torticollis, is the most common type. Cervical dystonia typically occurs in middle-aged individuals. It has, though, been reported in people of all ages. Cervical dystonia affects the neck muscles, causing the head to twist and turn or be pulled backward or forward.
    When I was suffering with lyme it didn't affect my neck muscles but it most certainly affected my legs.  
    Wish I could be of more help,
    It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
    This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA

    Regular Member

    Date Joined May 2010
    Total Posts : 26
       Posted 6/6/2010 2:24 PM (GMT -7)   
    Thank you :)

    New Member

    Date Joined Nov 2010
    Total Posts : 1
       Posted 11/6/2010 8:45 AM (GMT -7)   
    Hi Shelly,

    I have also been sick with Lyme disease for just over 4 years. Unfortunately, I didn't know it was Lyme until a year and a half ago... took a while for the doctors to figure it out (proper diagnoses is a problem in Canada).
    Anyhow, my experience of Lyme has been very neurological as well. Up until a year ago, I had great difficulty walking. I'm happy to say that I have been improving - I can walk very well now. HOWEVER, for the past 9 months or so I've been dealing with cervical dystonia. Though it's been manageable, the past month has been particularly bad, causing me great discomfort and much anxiety.

    As for my treatment of Lyme, initially I did about a 4-5 month go with antibiotics (metronizadole & clarithromycin). I experienced about a two week long Herxheimer reaction, which of course wasn't fun but a good sign, and then I slowly started to improve a bit. But then I plateaued and hit a wall, so I discontinued the antibiotics and sought alternative treatment. With my family doctor's blessing and under his watchful eye, I now see a Traditional Chinese Medicine Practitioner (TCM) who has specialized in treating chronic lyme for a number of years. I have been following his treatment approach for 7 months now. Through him I have learned a great deal about lyme, and have come to believe that over time I will one day be ALL better.

    As for the cervical dystonia, my neurologist (who knows nothing about lyme) has suggested I increase the L-Dopa I currently take (which he originally prescribed 6 months ago for the dystonia) or try a Botox injection. I've decided to increase the L-Dopa to see if it helps... if it doesn't, and if the pain is too much, I may try the Botox. We'll see. I've also begun seeing an acupuncturist and I'm hoping this will provide some relief.

    From what I have come to understand about overcoming Lyme, it's a series of hills and valleys. I really was doing very well about a month ago, and then suddenly the dystonia became much worse. The TCM lyme practitioner tells me this is very common of lyme patients who are healing. As the bacteria dies off, it releases toxins and symptoms become aggravated (Herxheimer reaction). I think this is what I'm currently experiencing and though it feels awful, I'm trying my best to stay calm and ride it out. We'll see.

    Hang in there!

    Forum Moderator

    Date Joined May 2007
    Total Posts : 35855
       Posted 11/6/2010 11:52 AM (GMT -7)   
    Hi Ganymede!!
    Welcome to the HW Lyme forum!!! I am really happy that you found us!! I am really sorry to hear that you have had to live with Lyme for so long undiagnosed!!! There are many of us that have had to live through that as well - myself included. I am sure you will find us to be a caring, understanding & helpful group!!

    If you haven't already, it would be a really good idea to read the thread at the top of our forum titled "New to Lyme?...Start here" as it is packed full of what we believe to be very important info about Lyme & other tick-borne infections.

    I am seeing an "Acu Doc" as well!! There are not a whole bunch of people here using this approach, but there are a few. My Acu Doc is also a Master TMC, Modern Chinese Medicine & Western Herbologist. She had been able to make more progress with me than any other doc I have ever seen - no exaggeration there!!

    I look forward to getting to k now you through your posts here on HW!!

    May you find peace along your journey to health,
    Trav smilewinkgrin
    Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)

    "Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

    New Member

    Date Joined Jan 2011
    Total Posts : 1
       Posted 1/21/2011 7:09 PM (GMT -7)   
    Hi Shelley,

    Have you seen any improvement in the dystonic features since you've been treating the lyme?

    Forum Moderator

    Date Joined Mar 2009
    Total Posts : 2154
       Posted 1/22/2011 9:54 AM (GMT -7)   
    So sorry to hear you have been so sick. Lyme is a constant battle of ups and downs. Just when you think you feel great, wham, you feel horrible again. I have learned that detoxing is so important. When you feel well you tend to think it will continue on the up and up but with the lyme cycling, you are never in the clear. When you feel horrible, make sure you drink lemon water and take baths if you can and eat right. It will make a big difference. Also, taking supplements like magnesium and potassium have been so valuable to me. Research, research, research. Sometimes the doctors don't have all the answers but those that have gone through it can off so much great advice. Best of luck to you. Hang in there. It will get better.
    Lyme, HME, HGE, bartonella. 4 years undiagnosed despite 10 drs.
    Current meds: roxythyroxine, bactrim, doryx, amanatadine, neurontin, xanax, valtrex, cymbalta
    Prior meds: amoxicillin, probenecid, minocycline, tetracycline, doxy. IV refused by insurance. Supplements: potassium, boluke, alpha lipoic acid, ag immune, magnesium, milk thistle
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