Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, this is a very common effect of lyme/TBD and it does sort of come and go a bit, but that aphasia twilight zone will clear with proper treatment and support.
I know this one, very, very well. I have also studied it during my worst days with this when neurologist after neurologist would tell me "there is nothing wrong with your speech" when my mouth / throat / brain literally was being paralyzed during nearly every word at time, and at least every other sentence most of the time.
Sometimes, this is mixed with word finding but often not. Certain letters seem to make it worse so if I can think on my feet, I scramble for a different word that will work . . .
that is when I don't just call everything a parking meter (yes, you can laugh at that as most of have been there, often).
Also, remember that part of this can be due to magnesium deficiency with muscle spasms.
Talk to your LLMD about the specifics of your situation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Greta,
If heat and humidity bother you, likely these also will make speech / brain / muscle issues worse.
You are a few hundred miles north of me and closer to the water but I wonder if you are getting unusually icky summer weather. I will say this has been the worst summer I've experienced in 25 years in NW Oregon. The heat and humidity have just clobbered me and I'm much worse in so many ways.
Let's hope for some clearing of the air. a drop in the humidity - and the wild fire smoke - soon.
Do what you can to stay cool and not even get hot in the first place.
Adrenal support is ever so much more important, too, as this "speech sticking" episodes can really elevate dangerous cortisol and clobber adrenal system.
Brain support with Fish Oil, certain B vitamins, etc.
Be sure gluten or MSG are not somehow slipping into your diet. Those can do this, too. It's how I've figured out, sometimes, that something slipped in.
A low carb diet also really made this worse for me. When I added back in some good non-gluten grains, it helped me not have blood sugar drops that also enhanced the "speech sticking" -- and protein with every meal and even every snack, too.
Inner ear issues also add to this. If you have any middle / inner ear issues at all, this can just go along with that. The vestibular system is very much wired to our brain, thinking, speaking abilities. When that is kaput, even in the least, watch out!
GINGER CAPSULES, to the therapeutic dose, constant level, helps. Ginger tea will not be enough. VINPOCETINE can also help.
I know I've seen you write about dizziness, so this makes sense in your case, even just from that issue. The INNER / MIDDLE ear system is vital to speech processing (and that is not even so much about hearing at all as it is about the BALANCE part of the vestibular system).
Still, this is very, very, VERY common for those with lyme, and during treatment. And, many have said it clears. As you identify the various stressor "bricks in your basket" and try to unload or alter the variables, you may see improvement.
Don't even try to swim (or talk) against the tide of fatigue, though. I've found no way around that "being too tired to talk" but trying anyway. Not something I can master. My body is glad when I figure it out beforehand.
I've go so many pat answers or interesting interjections. If around others, I ask leading questions and let them talk. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What you describe is discussed here, too (but this can be hard to read with tight spacing):
When to Suspect Lyme – by John D. Bleiweiss, M.D. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What helps, in addition to key supplements, being sure your LLMD knows about this to adjust your protocol or guide you.
soothing mind / body exercises so that the throat muscles / neck, belly with that muscle that I think starts with a "V" that can trip us up . . . I'm too tired to go on now but deep breathing, meditation, posture, humming . . . wish I could be clearer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I frequently have voice trouble, today in fact. Embarrassing. Mine is connected to lyme in nerves.
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Has your doctor/neurologist ordered a brain CT scan or a functional MRI (= with dye...shows blood flow - better than CT, IMO)?
I would ask nicely they be ordered.
Headache...50mg of P5P (by NOW...brand name... = the active form of B6)
and - with Ginger, 125mg by Nature's Answer should help.
Ginger inhibits PDE4 (inflammatory).
The above combo was recommended to counter migraines....by a neurologist whose specialty is Parkinson's.
Those are low doses. I had to really search for the lowest dose of Ginger I could find.
Both can be obtained via Amazon.
Neuro issues have been going on for 1 1/2 years (Jan 2013 "flare")?
When did you get lyme and when did you start treatment?
Have you been faithful about taking probiotics?
Because candida can be involved. If so...
That's easy...Berberine (Glycox - Amazon) and Fluconazole - Rx from doc (work in synergy):
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Thanks so much Keebler, Poppy and Marnie.
Yes me too Keebler, the weather this summer is terribly hot and very very humid. We have inversion now from forest fires so air particulates also high.
I have a cooling vest and ice gel packs for my head at work which help but still find easy to get overheated.
Have had contrast CT of brain and also plain CT of brain but at time also did not have LLND.
Stopped lyme IV and oral abx in May because finances.
Since been on alinia, now on sporanox for aspergillus in body.
No lyme bart or babs meds currently.
Noticed this time the speech issues came BEFORE brain pain and falling over. Maybe speech issues are good indication of encephalitis.
Haha! Parking meter! I like that. Good for many things.
I will try that P5P because my doc is on holidays.
Thanks for insight and sharing.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Greta, I have the word finding problem and getting the word out problem as well.
I know what I want to say but I just can't find the words, and I feel all tongue tied.
I find it most frustrating!! Some days I call every thing a "thingy"!
My last brain MRI was clean and I still have this issue so its not necessarily tied to lesions in the brain, but I would still get one done if you have never had one.
Posts: 187 | From Connecticut | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oceangirl-yes! Me too! Thingy, thingmabob, it, that there.
My go-to words for almost everything. Although now parking meter is a handy one for anything that stands.
Not had MRI, but when I read aritcle thought if a lesion (s) found on that part of my brain, it would support me getting a portacath for IV.
Otherwise will need to travel to US for one and pay privately. Don't have much money.
But communication getting harder and it is rude to point which is easiest for me. Also noticed intonation is wrong with wordsm some parts of words I say realy loud.
Sigh.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I have trouble. Mine got way worse with both head injuries. Both considered whiplash with concussion
Once soon after i was ar one end of kitchen seeing a pot boil over at the other end. There were ppl around but no one saw it but me. I coulnt move or talk to get help
I knew in my head what needed to be done and said but couldnt do it...i think.i clapped my hands a lot to get attentuon and then pointed to problem
After this incudent i listed expressive language problems as a sx...i couldnt pretend it wasnt real anymore
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpkayak,
What you describes sure rings a bell. I've had similar experiences. The worst is when falling but I can't move to hold my hands / arms out to protect my face or head. I know I need to do that but body won't.
I've done that pointing thing often and - most often - people really don't get the immediacy of my grunts. They say after the fact, "well, you should have just SAID so, no need for charades."
I read an explanation for this kind of paralyzing puzzle, relating to lyme, but I forget the specifics. It was comforting to read that I was not alone in that. It can also come sometimes from sheer exhaustion, just unable to literally move a muscle -- until rest.
And, it can happen just upon awakening. There is another type that can stall even "regular" folks but, with lyme, it can be more pronounced . . . the first few times this occurred, it was petrifying (but I already couldn't - "so, there" my body sort of said to me! I learned to relax and just wait). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
There maybe several interactions between Bb and Candida (and there is a new form of candida emerging...Candida parapsilosis). Oh, my!
Candida secrete lipases...they thrive off the lipids... breaking them down and using them as sole carbon sources.
Bb's carbon storage regulator A and Bb's transferrin (F3+3 binding protein) may help them to live in harmony. Candida has enzymes that impact transferrin i.e., it can get "at" iron which IT needs for replication while Bb uses iron for PROTECTION and has proteins to sequester it.
One researcher has made a connection between *candida* triggering celiac - gluten intolerance.
"Fluconazole assists berberine to kill fluconazole-resistant Candida albicans."
That combo. may hit more than "just" candida (Bb too), but I don't know if it can impact the newbie on the block...Candida parapsilosis.
For very complicated reasons...vitamin K2 (MK-7) may also be helpful combined with D3.
We have to get down several MMPs - metalloproteinases - that cleave i.e., chop apart, proteins.
More and more it appears the MMPs may very well pave the way for pathogens (viral, bacterial and fungal) to migrate and replicate.
Especially MMP7 and MMP9 which are upregulated in many very serious diseases...MS, etc.
Berberine looks to impact MMP9 and Vitamin K2 (MK-7) looks to impact MMP7.
Berberine works on many (!) other levels too. It inhibits Bb's FtsZ protein needed for replication.
What exactly is hypericin and the yellow laser going after...Bb infected macrophages *and/or* candida infected macrophages ' (WHICH macrophages.. M1/M2 or suppressor macrophages? 'cause:
Experimental planning can help to optimize the selective photoinactivation of Candida albicans with Hypericin
Bb stores carbon and has a protein to do so. Candida use lipids as a sole carbon source.
Bb has a transferrin protein that binds Fe+3).
Candida has enzymes that can breakdown transferrin so it can get "at" the iron for replication.
Bb doesn't need iron for replication, but uses it for protection...it is in biofilm LuxS for quorum sensing is Fe dependent and the iron is oxidized instead of Bb's proteins being oxidized.
Bb has a protein that ...ongoing...sequesters iron:
"Borrelia Dps forms a dodecameric complex capable
of
sequestering iron."
The carbon storage protein of Bb's is this:
"carbon storage regulator A protein (CsrABb)***"
***Dosages and timing*** of Glycox (berberine HCL) - OTC - and Fluconazole (Rx) as well as D3/K2 very much need to be figured out!!!
Ubiquinol can HELP (MitoQ if celiac is NOT a problem - celiac disease = inability to convert ubiquinone to ubiquinol due to low B6 and B12),
but the above maybe the most effective at eliminating the underlying infections.
Just how "broad spectrum" berberine may be to clear other co-infections too...has yet TBD.
We WILL find a way. A CURE IS POSSIBLE.
P.S. Keebler, go here - cure for celiac proposed by someone = pancreatic enzymes:
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I thought the following video might be helpful. It discusses the use of a herb known as terminalia chebula. What is cool is the discoverer of this herb, she is in the following video it gives you an appreciation of her science and her brilliance if you hadn't seen her before. Enjoy
Medicinal plants are part and parcel of human society to combat diseases
from the dawn of civilization.
Terminalia chebula Retz. (Fam. Combretaceae), is called the ‘King of Medicine’ in Tibet and is always listed at the
top of the list
of ‘Ayurvedic Materia Medica’ because of its extraordinary power of healing.
And...
"The practice of keeping gardens teeming with various herbs with medicinal properties was a traditional practice influenced in medieval Europe by the
gardens of Roman antiquity."
(The Romans and earlier civilizations were soooooooooo far ahead in so many ways.)
The ancients, amazingly, also had remarkable tools too:
"Surgery for cataracts goes back to the ancient Egyptians. Flat, copper needle knives (now in The World Museum, Liverpool) used for ‘needling for cataract' were found in the tomb of King Khasekhemwy, ***2700 BC***, in Upper Egypt."
BTW...berberine is a component of a herb...
"Although the mechanisms of bacterial killing and inhibition of biofilm formation are not fully understood, data from this investigation indicated a potential application for berberine as an adjuvant therapeutic agent for the *prevention of* biofilm-related infections."
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Greta, so sorry you are going through this. I agree with everything Keebler wrote.
Inversion layers always made me miserable when we lived in the south. I couldn't function at all. I think it was due to not getting enough air.
Also the humidity in the summer makes it worse. It causes me to breathe shallowly which also gives me headaches (so again, not getting enough air). A/C helps (dries the air out).
Not getting enough air truly affects my brain, ability to speak, etc so I need much more rest during this time. Also avoiding EMFs helps.
I hope you feel better soon.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I've added two biofilm disrupters (k2 and J&J baby shampoo -- that's right baby shampoo)
Biofilms are not suppose to be a problem, they become a problem when pathogens use them against our immune system.
Along with herbs is vitamin k2 for disrupting biofilm, I put a list of what the Weston Price Foundation as determined what is the best sources in food for k2. Unfortunately the table needs a monospace font like courier to view. You could take it out of the reply and put it into wordpad or word to change the font.
Figure.4: Vitamin K2 Contents of Selected Foods The percentage of vitamin K2 present as MK-4 represents that synthesized by animal tissues, while the remainder represents that synthesized by bacteria during fermentation. FOOD................VITAMIN.K2.......(MCG/100G) Natto...............1103.4...........(0%.MK-4) Goose.Liver.Paste...369.0............(100%.MK-4) Hard.Cheeses........76.3.............(6%.MK-4) Soft.Cheeses........56.5.............(6.5%.MK-4) Egg.Yolk.(Neth).....32.1.............(98%.MK-4) Goose.Leg...........31.0.............(100%.MK-4) Curd.Cheeses........24.8.............(1.6%.MK-4) Egg.Yolk.(US).......15.5.............(100%.MK-4) Butter..............15.0.............(100%.MK-4) Chicken.Liver.......14.1.............(100%.MK-4) Salami..............9.0..............(100%.MK-4) Chicken.Breast......8.9..............(100%.MK-4) Chicken.Leg.........8.5..............(100%.MK-4) Ground.Beef.........8.1..............(100%.MK-4) Bacon...............5.6..............(100%.MK-4) Calf.Liver..........5.0..............(100%.MK-4) Sauerkraut..........4.8..............(8%.MK-4) Whole.Milk..........1.0..............(100%.MK-4) 2%.Milk.............0.5..............(100%.MK-4) Salmon..............0.5..............(100%.MK-4) Mackerel............0.4..............(100%.MK-4) Egg.White...........0.4..............(100%.MK-4) Skim.Milk...........0.0 Fat-Free.Meats......0.0
Sufacants also disrupt biofilm like baby shampoo:
quote: Chris Kresser: Ha-ha, yeah, no joke. This is in the scientific literature. You’ll find studies in PubMed about this. So, it’s a 1% Johnson’s baby shampoo solution, so you do kind of like a Neti or a nasal irrigation with the 1% baby shampoo. And in the study, 60% of patients noted a significant improvement in symptoms, you know, reduction of thickened mucus and postnasal drainage.
posted
Wow, your post hits home for me. One of my most frustrating symptoms is this brain clog thingy, lol.
My speech is so bad at times, and awfully embarrassing, that I refrain from talking altogether.
I've become terribly unsocial, to the point that many people deem me a snob for never or rarely speaking to them.
I'm not a snob, I just have a hard time talking, and it's EMBARRASSING!
I stumble over words and in trying to get them out I sometimes make a loud, unintentional grunt noise, similar to what one might expect from a person with turrets syndrome.
So, I just avoid talking to people as much as possible. It's horrible!
-------------------- bla Posts: 59 | From Pennsylvania | Registered: Oct 2013
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Dr. Alan Macdonald has always been one of my lyme phd super heroes. He occasionally comes views some of these links. I hope the following video by Dr. Macdonald might help you, but it is also supports the rationale why biofilm is a problem.
It is my hope you can get well like me. I don't experience these issues any more and it my hope no one should experience them.
If you are supplementing with triphala great! If you've made an effort to include k2 (both mk4 and mk7) great! I get my k2 from cultured butter (1 tablespoon every day) from grass fed cows and cage free chicken eggs -- not to mentions meats. I make a latte everyday (1 tablespoon of butter or more, 2 tablespoons coconut oil and organic coffee).
What you do everyday beyond ABX or natural approaches is how well you tip to the side of health.
Please watch the video, it is a bit long, this man is on of our best advocates.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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