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Natural Treatments for Tics and Tourette's - A Patient and Family Guide


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Lo Carb/GFCF - what to expect?


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4 replies to this topic

#1 Boycie

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Posted 28 October 2012 - 08:13 AM

Hi,

This is my first post so thank you to anyone for taking the time to read and to anyone who chooses to reply, I am a 38yr old male from the UK with tourettes and possible Adult ADHD, I am very envious of the knowledge you guys seem to have and pass around, plus the open mindedness to other triggers/causes etc shown by some of your medical professionals, I think we are sadly still quite a bit behind you in the UK.

Anyway, to my question. My tics seem to be getting worse as I get older and this has resulted in me having to take time off from work. My specialist has prescribed me Topiramate and I am up to 125mg per day at the moment with no real noticeable benefit from this drug and the possibility of a surgical procedure has been suggested. I have put a lot of weight on in the last couple of years and had decided to try a lo-carb diet to try and shift the bulk of it relatively quickly. I have only been on this lo-carb diet for 2 weeks and have noticed a considerable improvement in my tics, from reading other posts on these forums, could it be because I am eliminating sugar/gluten and some dairy whilst on this diet?

I was wondering how long it takes to see the full effects/benefits of removing gluten/dairy from your diet with respect to tourettes (assuming gluten/dairy is a trigger), also this diet still permits me to eat cheese and cream so I guess from a dairy perspective I should be trying to remove these as well?

I am finding the diet a bit of a trial to stick to already because of the limited food choices - but I am not willing to give up the sustained improvements I have seen in my tics.

Grateful for any advice anyone can give

Thanks

Stuart.


#2 rowingmom

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Posted 29 October 2012 - 01:20 PM

I am finding the diet a bit of a trial to stick to already because of the limited food choices - but I am not willing to give up the sustained improvements I have seen in my tics.

A couple of great websites are Mark's Daily Apple and Robb Wolf's Paleo Diet. A good search engine for paleo recipes is Chowstalker. Low carb GF/CF isn't really limiting, although you need to change your perception of what real food is. Good for you for discovering how to improve your health.

Edited by rowingmom, 29 October 2012 - 01:21 PM.

DD12 - Born 2001. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever. 
June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34.  kDa 41++). CD57 18.  Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80.  CD57 16. 

April 2013 - Weaned from abx treatment.  Continue with Buhner herbs, Terry Wahls/PerfectHealthDiet gf/cf/sf diet.  Minimizing EMF exposure.

Sept 2013 - CD57 45.  

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved.  No flares with viral or other infections.  Herxing remains with changes in herbal protocols.

Nov 2013 - Improvement to 98% with addition of herbal protozoan treatment.

Dec 2013 - ANA titers negative.  PANS symptoms resolved.  Regular classroom requiring no accommodations.  B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea tincture.         

DS17 - Born 1996. No unusual symptoms.


#3 chemar

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Posted 29 October 2012 - 03:25 PM

Hi

for some great GFCF recipe idea you could try http://healthy-family.org

What type of surgery is your doctor suggesting?

When life brings you to your knees....you're in a good position to pray!

click here for: The Treatments that have Helped My Son

click here for the Helpful Threads on Tourette/Tics


* Focus on the light at the end of the tunnel.*


#4 Boycie

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Posted 30 October 2012 - 08:37 AM

Hi

for some great GFCF recipe idea you could try http://healthy-family.org

What type of surgery is your doctor suggesting?


He is putting me forward to be considered for a trial of Deep Brain Stimulation here in the UK, it is an option that obviously scares me quite a bit but the impact that my tics are having now on every part of my life and the way they affect my home life with my wife , kids, work etc I am starting to feel that these are the options I have to consider.

Thanks for the website address and thanks to you to RowingMom , i'll have a look.

#5 guy123

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Posted 01 November 2012 - 05:45 PM

Before considering surgery, if Topiramate doesn't work for you, you may want to give Clonidine a try.

Of the drugs that have been tested on tics, it has one of the most mild side effect profiles for most people, with the most common being drowsiness, dizziness if you stand up too fast, and libido. It works well for me and I take a tiny dose of it. I have found that the Clonidine made by Actavis has significantly less intense side effects than the Clonidine made by Mylan. The Mylan stuff made me super drowsy, gave me headaches and reduced my libido by quite a bit. The Actavis stuff has barely any noticeable side effects at all. I spoke to a pharmacist about this who told me I wasn't the first person to bring this up to her (regarding different brands of the same drug having different side effects). I'm in the US, though; I'm not sure what manufacturers you have in the UK.

If that doesn't work, marijuana has also been effective in some studies (not sure what the legal status is in the UK), and there is also Marinol (prescription pill form of marijuana).

Following those, there are few that don't have potentially severe side effects, including tardive dyskinesia (a potentially permanent movement disorder) and sudden death.

Here is a list of all known drugs that have been tested on tics sorted by type:

http://www.tourettes...-treatments.php

Regarding Deep Brain Stimulation, I saw a guy on TV a few years ago who had that for his Tourettes, and the results were remarkable.

Edited by guy123, 01 November 2012 - 05:46 PM.





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