It is hard to track because I only get this when I am working with letters/numbers. So if I am watching TV or something I don't notice.
Anyway I keep typing in numbers backwards and sometime letters. It's like my hands and eyes are not communicating properly with that part of my brain.
Also sometimes my words are silly. Like I will combine part of the second word I'm trying to say with the prior word. Or for example, word order - instead of saying "Go walk the dog" I will end up saying" Go dog the walk." I'm nuts.
Is this lyme? Or bart or Babesia? Or something else?
I dont' feel much progress on this area so want to make sure I can address is properly.
I really hope this doesn't become a permanent symptom that you just have to deal with forever!
Posted by Keebler (Member # 12673) on :
- The symptoms you describe are very common for many here. In fact, I'd say they are hallmark symptoms.
ANY infection can cause dyslexia symptoms. So can allergies, etc.
Anytime the inner &/or middle ear are affected, it can cause a lot of problems with cognition but also with the eye spasm called nystagmus.
MAGNESIUM can help calm nystagmus and also help soothe inflammation in the ears.
The ears are the first body system to detect toxins. So, with such toxic infections such as lyme, the ears are a big player in so many ways.
Some say BABESIA & BARTONELLA can both affect the ears more so than lyme but any infection, any liver or kidney stress, any immune challenge and the vestibular system can turn us on our heads (literally). Is your liver support enough?
It's amazing to see how many vestibular symptoms are also lyme / TBD (tick-borne disease) symptoms: ---------------
As for keeping hope, what I hear by those who get consistent treatment with good LL doctors is that, the ear stuff DOES get better.
As you've been treating for a year or so now, I know it seems like forever.
But stay the course, communicate with your LLMD and seek out the vestibular training that seems to help and toss that which does not (many ear specialists are in the dark about lyme so some of their advice does not work for lyme patients - but some really does).
If you can go back to some of the earlier posts of yours with the links to the vestibular support groups for Boston - and the body work links such as for Feldenkrais, that might be of help.
Really, this usually gets much better but it does take time so, in the meantime, be aware of the soles of your feet as you walk but keep your eyes focused on what's ahead (literally and figuratively).
Appreciate yourself for all the hard work you've done to get this far. I hope you can find the right tutor of sorts to help steady you as you move forward.
But, remember, that for most who saw their vestibular symptoms fade, it was the anti-infective treatment that made the biggest difference. And that takes time, sometimes years. A good LLMD and consistent treatment will get you there but
in the meantime, be sure your LLMD is very aware of your vestibular concerns. And remember that MAGNESIUM and GINGER CAPSULES can help. VINPOCETINE, too.
But be sure your LLMD is considering ALL COINFECTIONS.
I'm pretty sure you are gluten-free, so be sure to keep that up (as well as avoiding dairy, corn).
Hold onto your hat as the storms creep in this season. Changes in weather may test your balance all the way around. Hold onto your hat and pay attention to where your feet are planted.
You will grow. -
[ 10-06-2011, 12:26 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Cranial nerve VII (Vestibulocochlear nerve)is often affected by lyme / TBD / chronic stealth infections. See the chart for a little detail.
I try to visualize all those parts becoming calmer, stronger and (therefore) happier - so that I can do the same ! -
Posted by penguingirl (Member # 28688) on :
Thanks Keebler - you are always a wealth of information!
I have been improving greatly in the last few months, thankfully - I think most of it attributed to my IV Rocephin. I tried many different orals and even Bicillin shots but I kept getting MORE symptoms. Wrong direction!
Anyway now it is mainly neurological and some joint, chest, feet, ear pain. Headaches are minimal although my head tends to feel tingly a lot. Nothing to complain about but just weird.
I also feel weird pulsating sensations - like a heart beat all over my body that lasts only a few min at a time but just migrates all over. Again, nothing painful but strange.
I have been improving so much on my balance - I see a very qualified vestibular therapist. She got me walking more than a few steps without falling over now. We were very emotional when that happened. She says I have vertigo even though I don't feel dizzy anymore - my brain still wants to fall, so we are retraining my body.
My light sensitivity, noise, smell has also imrpoved although still heightened more than the average person.
I get startled super easily - over the smallest things - makes my heart stop for a few seconds and it is not fun. Living in the city makes that challenging but I just try to prepare myself of any sudden motions/noises. If I KNOW that there will be a honk, then I'm ok but of course, who can anticipate those types of things.
Is soy ok? I know most of my supplements are are GF, corn free, but not sure about soy. I do enjoy eating tofu and edamame - I use tamari sauce instead of soy sauce to avoid the wheat part. But I don't eat soy abundantly so I am hoping it is ok.
I need to see if there is a specialist that can work on my vestibular word reading/typing issues that maybe a physical therapist can't address. Do you know if that kind of specialist exists for cognitive skills? I will ask my neurologist at my next visit.
I see a LL neuro in conjunction with my LLMD who is actually a LLND. She is aware of my neuro issues and I took a cognitive test as a baseline to see my skills. As expected I did not do well on that test - my memory is awful and my perception of space is not good (but I think that test is hard for anyone - lyme or not!!)
I am treating Bart for the moment but I did address Babesia for a few months which I think I have almost conquuered, although can't tell which symptoms is bart/babs related. It is all too confusing.
I will look into getting more ginger capsules and vincepotene - is there is a brand you prefer on those? I am taking about 1700 mg of Magnesium Malate. Also taking Seagate OLE twice a day.
It is SO cold here in Boston today! I am not sure if my ears are happy with that - it has been aching all day even if I am back indoors in warm heat. I think it will take some adjusting to this weather change. Of course this Saturday is supposed to be around 75-80 degrees so it will be a confusing ride for my body.
Keebler I hope you are getting better each day!
Posted by Keebler (Member # 12673) on :
- PenguinGirl,
thanks for the kind thoughts.
tamari sauce can trigger these myoclonic startles due to the high glutamate content.
Also avoid L-glutamine (you did not mention that, but in case you are taking it, it is contraindicated for those with startles).
As for soy, I'm on the fence about that as it does have some benefits but, if it increases estrogen, it's important to know that high estrogen can lower the threshold for which myoclonic (&/or acoustic) startles happen.
Rather than processed tofu, the actual bean is best, or fermented like miso (soup) or tempeh.
I know that miso soup can trigger several startle reactions for me, so I have to avoid that. Although it does have some good probiotics in it.
However, those might have a high glutamate content (I think I recall having read that) so check with a web search first.
Some say that any soy can stress the thyroid and sort of cancel out thyroid medicines. But there is a difference of opinion about that. I'm not sure.
See how you feel after eating some foods. Also know that a delay reaction of several days might occur.
Talk to your ND about these:
DAN SHEN can be calming for startles
GOTU KOLA, too. GOTU KOLA is also good for the brain.
Vinpocetine might be a bit too energizing and, therefore, set the threshold lower for startles. But it can help in many ways with vertigo and cognition. Start slow and see how you do.
DAN SHEN -
Posted by penguingirl (Member # 28688) on :
Thanks Keebler - I will have to ask my ND about those herbs and about eating soy.
Posted by JAC (Member # 34240) on :
Penguingirl I had an episode of dyslexia along with loss of vision and loss for words as your experiencing. I still deal with my words and vision strongly.
I told my family dr who sent me for an mri which showed alot of white spots that were newly formed in my frontal lobe of my brain. She sent me to a neurologist - wrong move!
She said go to opthalmologist for eyes, otherwise she chalked it up to depression and anxiety. Which is under control. She wouldn't even acknowledge my Lyme diagnosis. White spots are common in people no big deal she said.
My prior brain mri was normal about 3 months before this. I wish I knew how it affects our brain. Have you had an MRI?
South Eastern PA has its ILAD mtg open to public next month it is on cranial issues. I hope to attend and learn more.
Meanwhile I have to really concentrate on my writing. When I am not looking my numbers and a few letters easily get written backwards.
I have given up on worrying about getting my words straight. I just say "you know what I mean!" Otherwise my dishes would be in the refrig and my food in the dishwasher or even the microwave. I never get those things straight.
Posted by penguingirl (Member # 28688) on :
JAC - yes I have had several MRIs. I just have a pineal cyst but it is not that large so they are monitoring it. It was probably there long before I had lyme symptoms though!
I don't really write that much (handwrite) but the few times I did - sometimes I struggle with word order too (like if I want to write the word "brown rice" I will end up writing "brice") I remember this because I was trying copy down a recipe that involved brown rice.
Yes I always say that too "you know what I mean"
Posted by scorpiogirl (Member # 31907) on :
Hey girl,
I do that all the time... well only when I'm speaking that is. For example I'll say
Golden Yogurt Frozen Spoon instead of
Golden Spoon Frozen Yogurt!! Of course the kids thinks it's hilarious! Sigh...
Posted by momlyme (Member # 27775) on :
I have had Lyme and cos for 17+ years and never had dyslexic symptoms until I got the mold exposure. I don't know if its the mold our the mycotoxins that mold makes... but I do believe my dyslexia was caused by mold exposure.
I am better now that I am out of the house... when I lived there I was having trouble with numbers, letters, directions, even placing a stamp on an envelope or driving a car.
Now, when I get r-exposed to mold, the symptoms come back almost immediately... and sometimes my speech even slurs.
Posted by momlyme (Member # 27775) on :
I also want to add that beyond dyslexia I feel like I have memory loss. Complete and total memory loss.
Lately I have watched 3 movies that I know I have seen and they were COMPLETELY unfamiliar to me.
I forget people's names that I have known all my life.
I have trouble with many things that used to come easy to me.
I asked a toxicologist who has been studying mold for 28 years about this memory loss and dyslexia. He says these brain problems are caused by mycotoxicosis. Specifically, the mycotoxin Trichothecene effects the brain and so much more.
***He suggests that taking a bath with 1 cup of ammonia mixed in the water will draw the mycotoxins out. This is effective only after removing yourself from the exposure.
Posted by James1979 (Member # 31926) on :
I just want to say that I feel so sad for all of you.
I only had dyslexia for a couple of weeks at the beginning of treatment, but I know it's scary. I started getting afraid of opening my mouth because I didn't know what would come out.
Posted by penguingirl (Member # 28688) on :
Thanks guys.
Momlyme - I did test my place for mold and it came clean. Just a lot of dust!
Maybe I can try taking that bath though just to see if it will draw anything out.. if I maybe got it from some other home or building..
I just want to stop feeling so stupid! Posted by Keebler (Member # 12673) on :
- momlyme,
the advice about taking a bath in ammonia is, IMO, terrible advice. Even opening the bottle, even HAVING a bottle around is not good for any of us.
ammonia is VERY, VERY toxic, especially to us, especially in a closed room, with hot steam.
Please do not do that. Please. There are other ways to deal with that. I don't have the energy to go searching for the details but I know there are much safer ways.
Ammonia fumes can cause liver toxicity & seizures, and worse. -
Posted by penguingirl (Member # 28688) on :
Ok that makes sense Keebler.
I do have some ammonia that I used long time ago for cleaning and it is SOOO strong smelling. I have to wear a mask whenever I clean with anything strong-scented.
I will just ask my LLND about this when I see him in a few weeks. I don't even know if I have any mycotoxins in my body.
Posted by Keebler (Member # 12673) on :
- A typical mask offers no protection from fumes, only from particulate matter (dust, etc.)
We should not even store ammonia in our homes. Fumes seep out of the bottle.
But, it can't be tossed down the trash chute, either - or sloshed down the sink. It may require special disposal. Call your trash carrier to find out.
I hope you can get rid of that ASAP. -
Posted by scorpiogirl (Member # 31907) on :
quote:Originally posted by momlyme: I asked a toxicologist who has been studying mold for 28 years about this memory loss and dyslexia. He says these brain problems are caused by mycotoxicosis. Specifically, the mycotoxin Trichothecene effects the brain and so much more.
***He suggests that taking a bath with 1 cup of ammonia mixed in the water will draw the mycotoxins out. This is effective only after removing yourself from the exposure.
Ok I have heard of adding a table spoon but not a cup!! Gosh you can get poisoned w/ that amount!! That's crazy! That would just burn my throat, eyes and nose... and kill me.
Unless you mean to say hydrogen peroxide instead??
Posted by HopesAlive (Member # 29774) on :
Two smells that make me SICK: ammonia and Pinesol. I cannot stand those two smells.
Posted by HopesAlive (Member # 29774) on :
I am notorious for mixing up my words, saying the wrong word for the right word. For me, this started, years ago, when I first started getting migraines. I get many neurological, stroke-like symptoms when my migraines come on: difficulty word finding, numbness, aura, and on and on. In fact, my sons now are alert to this and when I start mixing up my words they will ask if I am getting a migraine. Since Lyme, it has become worse. I have to proofread everything I write, because I will sometimes do the same when I am writing.
Posted by penguingirl (Member # 28688) on :
Another bad smell is Febreeze. I think I bought some swiffer wipes once that had febreeze in it but didn't know..
Gave me a bad headache (not migrane but still bad) all day.
I feel the more I talk outloud in a long sentence I get stuck. If I try to do short sentences it is not so bad. But if I am trying to explain a story or something, then I stumble.
And also word recollection like a name of a place is hard. But it is not consistent so I can't figure out a pattern.
I'm determined to fix this. I know sometimes with lyme you might have some permanent symptoms even when you feel better, etc but this is one symptoms I don't want to be stuck with!
![[Frown]](frown.gif)