I really need help with anyone who has had Ataxia symptoms and has been treated. Please post any helpful information
Posted by map1131 (Member # 2022) on :
Have you tried doing a search on here with Ataxia? I just did and there's 99 threads from the past with Ataxia.
Did you get this dx from a lyme doc or from a specialist?
Pam
Posted by SDAR (Member # 51751) on :
Diagnosed from A Lyme Specialist and Igenx test I have searched Ataxia and did not find anyone specifically that has Ataxia
Posted by Keebler (Member # 12673) on :
- Edit here: I just re-read to see if this made sense. Typos galore, so many I'm shocked. but too tired to correct. If you find them, just smile.
SDAR,
I posted this in answer to your question over in a dizziness thread but thought you might want it in your thread with the subject title matching.
- SDAR
I had had it worse yet still have ataxia - situationally, so to speak.
For me, it's likely various neuro functions getting "stuck" but directly also is related to various vestibular - inner / middle ear issues, too.
Sounds & Movement (even in nature) are my main triggers that cause my muscles to lock up. Fatigue, too.
I don't know if you posted in the other thread because you also deal with vertigo or not. If so:
"The Epley Maneuver" may work for anyone dealing with that now. It depends, though. Google just that for faster finding or see it somewhere in here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-- Back to ATAXIA, there can be many influences, triggers and maybe even causes.
It's nothing new to those dealing with lyme, many not many but certainly more than just "some" seem to have this.
Most for whom this develops while they have lyme find it is lyme (or other tick-borne infection) related. And treatment for such usually helps this diminish and even subside, though it may take a while for treatment to work.
Certainly, if at all possible one's ILADS educated (and beyond with experience and study, etc.) LLMD or LL ND should be consulted. Also ask if they think some imaging of brain or spine should be done.
For vestibular connected issues, by going over some of the topics in the thread above, you may find some good aspects to pursue.
Vestubular therapy might help - at least to a degree to help with your safety of where to look, your posture and how to manage when "stuck" --- if the inner / middle ear is involved.
I cannot tell you have valuable these kind of things are to my safety ever day. Knowing where to look, and being mindful of my feet and my position in space has saved me from many tumbles.
And if you use a cane, I make sure it's the length for your comfort. Mine is very short - It comes up to fit in the palm of my hand when I'm standing straight. I just sort of let it ease up a bit higher so as to not even hit the ground --- until I feel a sense that I'm getting "stuck"
Some PTs have been alarmed that it's too short but it works perfectly for how I need it. I hesitated for a long time with that and took a lot of tumbles. Making peace with it helped.
I only use it when I'm out as that's the only time ataxia hits, really (other than in my voice on the phone sometimes).
For me, the movement going on about me when out -- or uneven surfaces, etc. Those are my triggers. You may or may not have triggers but if you do, they can really help figure out not just some of the influences but maybe the cause(s), too.
QiGong has been very helpful for me. Tai Chi involved too much turning of the head and side to side traveling for me, though.
I was vegetarian when this all started, at my sickest. Since I've gone back to eating meat (grass-fed & finished if possible) - and a good portion of it most days. I am stronger, too. 14 months now on a ketogenic diet and that has helped even more.
The increase in good animal fats, Vitamin D & cod liver oil seems to also really help my neuro function / vestibular tolerance and muscle strength.
I've never been able to access a proper treatment program for lyme / babesia, etc. yet have found certain herbal protocols that helped to some degree.
While I have all that stuff, more specifically, I deal with a whole in a bony ear canal that should not be there (the hole, that is).
An MRI can't show this and I went years thinking that an MRI that did not show it meant no troubles with ear bones. It took a very specific CT scan to show it. Detailed in the TINNITUS thread.
But any kind of inner ear / middle ear issue can contribute to or even be the cause of some kinds of ataxia or for some people.
With lyme, though, that also is a key factor.
I hope you can access an excellent LL doctor. Really look at babesia and bartonella, in addition to lyme, though as those two are often on board with ataxia.
Aside from the neuro influences, the sheer exhaustion of dealing with lyme can make ataxia events occur more often.
And the weakness of the body with babesia, the attack of the red blood cells - I suspect that when I was at my worst, it was due a lot to that.
My body could not get stronger until infection was worked on (however that is. I found the Zhang protocol the best for me but I had to stop it short).
If you happen to be taking any Rx, also look to that for how it might be influencing or even causing ataxia for you -- or making it worse.
Check out what your red blood cells look like and your iron nutrients, etc.
and SALT -- In my experience, I tend to think that the low blood pressure issues often faced by those with lyme can highly influence ataxia events.
POTS, NMH, etc. adrenal issues, tired now so can't elaborate but start with being sure you get enough salt.
I require at least 5 grams a day. I start with one gram in water and get that down fairly quickly. Most LLMDs know all about POTS, NMH and the drops that can happen that seem to kidnap muscles along with all that.
I have a tiny gram spoon but you can look up the tsp. = it's about 1/4 tsp.
With low sodium / electrolytes / minerals, the neuro signals can go kaput is various ways. Magnesium might need to go up to 1,000 - 2,000 mg a day always in divided doses.
And the gov't recommendation for salt is wrong, just wrong. But do consult your LLMD about it for your own body and considering any Rx.
Redmond sea salt is what I recommend. - and keeping to zero processed foods, or course. They can really mess up neuro function in many ways.
I also strongly suggest no colas but especially no diet colas and no aspartame (I saw direct ataxia from that long ago but I was clueless to aspartame damage).
I know this is getting long but there are so many key considerations.
Plant LECTINS and OXALATES might also have an influence.
For instance, lectins have been found to affect movement disorders of Parkinson's. I suspect also other conditions might be affected by lectins.
Search You Tube: "Dr. Paul Mason" Lectins
for his talk from March of this year at Carnivore Conference. Now, no need to think I'm saying one has to eat only meat but his talk is very good and it just happens to be at this conference.
About 13 minutes into this is where you see that part. The lectins travel to the brain from the gut / from the vagus nerve. the diagram he uses is helpful.
I also went to all his sources and studied those - it's remarkable. I have all that in a file but will just let it stand as this: plant lectins might have an influence in various movement disorders. Worth considering.
I also think all artificial or processed sweeteners should be avoided, even stevia. I have studied this, too, so it's not just my hunch and my own experience. It gets easier after awhile though the hope of better nerve function is a good reason to stay clear of those.
Good luck & take care -
Posted by map1131 (Member # 2022) on :
SDAR, click on search at top part of page. Put ataxia in field. Go down and click medical. Arrow down and hit search.
It will show you all the threads/posts that have have ataxia in them.
Pam
Posted by TX Lyme Mom (Member # 3162) on :
For symptoms of ataxia, try going strictly Gluten Free because ataxia is known to be a classic symptom of "neuro-celiac", and I'm convinced (but cannot prove it, of course) that latent celiac can be activated by Lyme toxins in someone who is genetically predisposed to celiac.
However, I'm NOT saying that a GF diet will cure Lyme disease, but there is a very good probability that a GF diet will cure the very unpleasant ataxia symptoms.
PS -- I'm editing to add that this comment is based on very close observation of a family member, combined with several years of in-depth study of books and articles and websites about celiac.
Posted by Tincup (Member # 5829) on :
Many people use a chiropractic neurologist to help them with this nasty symptom.
Heard it works wonders, no pain, no meds, etc. All around nice and they take most insurances.
Scroll down till you see the section that says... Chiropractic Neurology- Search. Click there.
Then type in your state's initials only in the box for State. Nothing else.
You should get a list of any in your area, although they are few and far between because it is a super speciality.