I am wondering how many folks out there are dealing with Lyme and Dystonia?
If you are, please let me know:
Did you have the dystonia first? Did it come on after lyme (or coinfections?)
How long have you had (dystonia/lyme?)
What do you think caused your dystonia?
What kind of dystonia do you have? Did it happen as a result of an accident or just come out o nowhere?
How do you treat it?
Has the lyme treatment helped? Did the dystonia go away after treatment?
Does your LLMD know about dystonia?
Please share your story. It's bad enough to deal with Lyme and Co-infections. But if you add dystonia, well, life gets really hard.
Just want to hear other people's stories. Thank you.
Posts: 165 | From lymeland | Registered: Apr 2010
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I know that you would prefer to hear personal stories from others, but in case you don't get too many responses then here are the results of a Google search to help reassure you.
posted
I have not been diagnosed with dystonia, but have seriously wondered if that is part of what I have because of lyme. I have googled it a bit, but I've been so sick/fatigued to check into it more.
If I do have it, it definately came with the lyme.
I am supposed to make a video for a movement disorder specialist, but next to impossible when most days you can't even get out of bed.
Were you diagnosed?
Posts: 111 | From northeast Iowa | Registered: Oct 2006
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Where is your movement? Is it in your neck primarily? What kind of tremor do you have? Is it constant?
Posts: 165 | From lymeland | Registered: Apr 2010
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posted
My daughter has a movement disorder which definitely came from lyme. She was paralyzed from the hips down for nine months because of lyme with no use of her legs at all. When she started to get feeling back and began walking we found out that she cannot stand in place without constantly moving her legs.
Her neuro diagnosed her with PANDAS from the lyme. She is on IV gammaglobulin for neuropathy which is supposed to also treat the PANDAS. She has only been on it for four months. The neuropathy is improving, but the movement disorder has not improved yet.
I heard it can take up to one year to see results.
Posts: 51 | From Connecticut | Registered: Sep 2008
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Hubby does not have true dystonia because his comes and goes. I have described his various movement disorder issues here many times. At one time the ER docs thought hubby had muscle rigors but his LLMD's practice partner who witnessed one of his spells in the docs office once called it dystonia and that term seems to fit better -- except as I said the symptoms come and go.
Hubby just had a repeat brain SPECT scan at Columbia Presbyterian in New York. The technician was asking hubby about his symptoms. He knew more than many neuros hubby has seen. He said that true dystonia where the limbs are locked into various abnormal postures is seen mostly with kids with tickborne illnesses and rarely with adults.
Dystonia is a neurotransmitter imbalance -- primarily acetylcholine and dopamine. Very high doses of IV Ativan (8 mg per day) is what the hospitals and ER's use to control hubby's dystonia episodes when he crashes -- seems like that happens about every 6 months or so.
The February 2011 issue of Reader's Digest magazine has an article called "The Day My Son Walked Again" beginning on page 139 which talks about a young boy probably born with dystonia. The treatment he receives is l-dopa that is given to Parkinson's patients.
Hubby had a Parkinsonian tremor from mercury toxicity back in 1999. He went thru chelation and the tremor was 95% gone. Then in 2001 it came back. It took us a couple of years to get the Lyme and tickborne diagnosis. The chelation meds no longer worked on the tremor because it was being triggered by the tickborne illnesses.
The problem is that the symptoms of acetylcholine excess or deficiency are the same. Parkinson's meds actually made hubby stiffer and did nothing for the tremor. Benadryl also does not work -- at 400 mg daily it would stop his tremors when he had the mercury toxicity.
Hubby did do some IV phosphatidylcholine -- the P.K. protocol - also called lipid exchange -- and felt that was helpful. But it is extremely expensive. He also did the oral phoschol for a couple of years. Now he just uses oral lecithin.
The best source I know of for oral phosphatidylcholine is below. Hubby used to take 2 tablespoons daily. Said it tasted like burnt motor oil. At that dose a 16 ounce bottle lasted a month I think.
Both lyme and babesia rob the body of phosphatidylcholine. This can lead to imbalances in acetylcholine and dopamine and result in the Parkinsonian tremors. It can also affect gallbladder function and the myelin sheath around nerves leading to peripheral neuropathy.
In hubby's case I think he actually produces enough dopamine but if you don't absorb enough good fats your brain will lose receptor sites and the dopamine you have may not function correctly. That is the way P.K. explained it to us. The phoschol is supposed to help rebuild the receptors by getting more fat into your brain and to the myelin sheath.
Also brain inflammation can cause oxidative damage to the good fats and result in high levels of lipid peroxides. Hubby had this tested a few times by MetaMetrix and Genova Diagnostics (the old Great Smokies Lab). He was also tested for levels of the various fats -- he was actually low on both the good and bad fats and his cholesterol was very low -- he even had a few IV's of good fats at one time.
With hubby back in 2001 before he was diagnosed when he was really bad off he shook pretty much 24/7 -- he would shake so hard in his sleep it would wake me up. Over the years his tremor eventually became more episodic -- would act up for a few hours at a time -- and always around mealtime.
The first time his tremor actually went away and he actually slept thru the nights for a couple of weeks without nightly seizure-like spells which triggered tremors and dry heaves was in the spring of 2009. At that time he was using extremely high doses of cryptolepis tincture which is supposed to work on both babs and bart.
Anyway -- the herb became unavailable and when we tried it again a few months later he could never get to the same therapeutic dose -- caused him to feel like his brain was on fire.
In July of 2010 hubby had one of his crashes and ended up in the hospital for a week. This time I convinced his LLMD's to put him on IV Rocephin. From the first dose his tremor went away and the dystonia as well. He is sleeping thru the night without nightly spells for the first time in 10 years.
He had done IV Rocephin back in 2003 and it did nothing for his tremors. At that time I had to stop almost every single dose at least once to give him IV Ativan for seizure-like episodes. But this time the med was a miracle drug. I think the difference is that we may have finally gotten rid of his bart.
Since Thanksgiving the tremor and dystonia are trying to creep back. We feel this is a babs symptom this time.
Hubby is now 55 -- was 45 when he first got sick with tickborne illnesses. The moral of the story is that dystonia can definitely be caused by tickborne illnesses and also that with treatment it can be reversed.
Bea Seibert
P.S. Hubby also suggested using passionflower tincture to increase GABA -- a calming neurotransmitter. This is what he uses for sleep anymore -- takes about 6 droppers full nightly (a 2 ounce bottle lasts 10 days -- best price at VitaCost). Also adds a dropper of Kava and a dropper of hops. This combo is working very well.
If he wakes up and has trouble getting back to sleep he takes 1 or 2 extra droppers of just the passion flower.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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