today, KW is bouncing off the walls like a superball that has been set off by the Incredible Hulk. :/
Now imagine what the reaction of ppl would be in a room with that....
I think I will not be attempting to go out today.
Posted by Keebler (Member # 12673) on :
- "Symptoms of Smell" or "Reaction to Scents" ?? From Dutch language ?
Are you having an MCS reaction?
Still, not sure that's the right translation but if KW is yourself, if you are experiencing high anxiety ("bouncing off the walls") CAFFEINE would be my first suspect.
Regadless, though, MAGNESIUM is the first "first aid" choice for calming neuro or adrenal over-excitability. FISH OIL, too.
After that, you might check to see if you have mistakenly ingested any MSG, by any name.
Too much glutamine or glutamic acid can be overly excitatory for the nervous system, too. Be sure your supplements do not contain any added glutamine or glutamic acid - or other excitatory amino acids listed here:
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the 2011 & 2012 annual ILADS conferences.) -
Posted by Lymetoo (Member # 743) on :
Sx de geur
huh??
Posted by Keebler (Member # 12673) on :
- Perhaps "symptoms du jour"?
Still, if your symptom "soup of the day" brings "bouncing off the walls" the advice in the first reply still holds true. -
Posted by KentuckyWoman (Member # 38894) on :
I actually looked up how to spell "de geur" bc I don't speak French. Yes, I was going for "symptom of the day" Or morning as with me.
My sxs run by sections of the day.
I'm usually at my best in the mornings.
I'm off my antibiotics this month, taking ART and Mistletoe cocktail injections to build up immunity, but the supplements and probiotic. After my seizure Sunday though, LLMD took me off of the ART for a few days.
Sorry Keebler, I don't have all the names and details. LLMD wants me to break on abx (bc I've been on 3 months) to build up the body, then go back to abx. Pulsing etc.
Well two weeks off my abx and my neurolyme and bart sxs are re emerging.
Bouncing off the walls is one of my neuro symptoms. I have many, but this one does not come and visit as often as the others.
When i'm like that, it usually lasts for about 2 hours and then I get all stupid-dupey and lethargic. It's like a balloon that's blown up full and let loose.
I was just snickering at myself this am for my "cute" analogy.
I'm used to the sxs now basically, including the seizures, unfortunately, that I give them names and it's my coping mechanism.
I am more scientifically-minded about them all and take them as they come, document, document, document.
I don't gasp at the fact of the seizures anymore really.. the fact of them annoys me greatly and riding them out at the time is no picnic.
I don't get all emotional about the sxs themselves, although, and this will not make sense to general world, I do have tearful spells, which are not emotional. Same with laughing at nothing funny. Anger over nothing significant. They fit in the neurolyme box of my sxs.
I did take an extra 250Mg last night on top of my usual daily 500 bc I was having jumpy legs again. Took a detox bath this morning too.
Thanks Keebler for the links. I will look them up as soon as I can focus better. :/ I always adore you for your information. I wouldn't be this far without many of your links, I can say that for SURE.
My neuro sxs have been back for a little over a week now.
LLMD is close contact by phone with anything that pops up I feel like I need to call about.
I'm just hoping I can get my notes together straight for my next appt. lol.. it's on my first "to do" when I get a clear head. It'll come, just don't know when.. it's like waiting to catch a bird like when we were kids.
kw
Posted by KentuckyWoman (Member # 38894) on :
Prattling on and on, as you can see is another one of my neuro sxs. lol..
I just sent a neighbor home DIZZY after listening to me yack for 2 hours. Poor thing.. I hope she'll be alright. . .
Posted by Lymetoo (Member # 743) on :
I hope you feel better soon, KW! I had no clue what the discussion was about.
Are you sure you haven't added a drug that is causing the "bouncing?"
Posted by payne (Member # 26248) on :
super mothers are real, next time you launch with agression, put on your cap crusaders wear and Go ! (:
Posted by Keebler (Member # 12673) on :
- Sorry to hear about the seizures. No stranger to all that, I have some thoughts but no energy to formulate that now.
I know you may not be able to read this now, still, for your study notes, some things here that I've found to make a difference.
First, I'd avoid all fluorescent lights and be sure you've not mistakenly been exposed to GLUTEN, ASPARTAME or MSG (this last one I spoke of above).
It can take days, if not weeks, for the brain and adrenals to "come back" after a seizure. Be kind to yourself.
Lithium OROTATE may be good now. More about that, etc:
Topic: Seizures / Numb cheeks / EEG - QEEG / tests -
Posted by Keebler (Member # 12673) on :
- LAWN SPRAYING in your neighborhood ?
When you see any lawn crew trucks around your block, close up windows and keep them closed for hours. -
Posted by KentuckyWoman (Member # 38894) on :
Yes, thanks Keebler. I think I have all those bases covered except maybe the gluten thing. I'm still in the baby steps stages of learning all the ins and outs of gluten.
My main focus the last few weeks is learning all about GMOs and where they hide. It's an evil battle.
I eat whole wheat/grain everything, avoiding white stuffs. Still learning where all "gluten" hides really.
I consume VERY little sugar at best and absolutely no artificial sweeteners. But, like GMO foods, it's hard to know for SURE about it all.
I went anti artificial sw years ago. Then way before I even knew I had lyme, I went UNSWEET on everything.
I think my perfect storm for Sunday was a combo of things, all of which, frankly would be hard to point to. All of which are known "triggers" to my sxs.
Off antibiotics 2wks (so neuro sxs were returning), on ART, stopped active detox, Full moon (seriously), period started day before, Rain, church singing (which has been one of the VERY obvious triggers all along)
It really was my perfect storm.
So, I've written it all down for LLMD. Actually can't wait for my next appt.
Thanks again. Always love the suggestions of what to research.. You've been a tremendous help to me in my baby stages on this forum. I really feel like I'm toddling along so much better with your helping hands.
Posted by Keebler (Member # 12673) on :
- Thank you for your kind words. I do hope it all helps. I like to gather detail that would have made a difference had I known it in time -- so that it helps others. But I know it's a lot to take in at once and my notes are best as research files.
It may not be "church singing" as a trigger as much as scents being worn by so many?
If a church where incense is used, that's another factor can can clobber.
If an organ is being played, dust from the instrument, itself, with all the places dust (and mold) can collect and also from the PIPES.
And on and on. Don't stop singing but you may have to find a different venue to sort out your triggers.
As to Hidden Sources of Gluten, see detail here with links specifically to help. Even lip balm. Yeah, that surprised me.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Keebler (Member # 12673) on :
- You say you are "on ART"
Is that artemisinin? If so, that triggers all kinds of reactions for me. It could be that it requires the Cytochrome P-450 liver detox pathway and that is often very stressed in those with lyme.
Liver support is very important with taking artemisinin, but more specifically, support to help keep porphyrin level from becoming high and toxic.
Detail here, see the "Secondary Porphyria" post and then also some on Artemisinin (if I recall correctly but too tired to look now):
You also say that you "stopped active detox" (end quote)
While I don't love that term "detox" because it can imply an event (and definitions vary) rather than on-going liver care, if you took artemisinin without any liver support, that could very likely be a huge factor.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by KentuckyWoman:
I eat whole wheat/grain everything, avoiding white stuffs. Still learning where all "gluten" hides really.
- Gluten "hides" in WHEAT. Because you are eating whole grain, you are consuming high amounts of gluten.
Going whole wheat is what got me into trouble back in the 70's. I didn't know I was sensitive to gluten!!
It can cause neurological symptoms too!!!!
Posted by Keebler (Member # 12673) on :
- I thought Spelt would be okay - and that also caused the same kind of seizures for me that wheat did.
Some celiac tests were "done wrong" and turned up negative so I was greatly mislead. Finally, after years, a different doctor suggested a genetic blood test and that was positive.
Whether celiac or not, though, it's very important than anyone with any health challlenge consider this.
Modern wheat is a "perfect, chronic poison," according to Dr. William Davis, a cardiologist who has published a book all about the world's most popular grain. . . .
Text and Video interview at link above.
===============================
HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):
Spelt (Triticum spelta) -
Posted by Keebler (Member # 12673) on :
- Even if "gluten-free" processed foods are not a good idea, usually.
If you are going to include grain-like items, be sure veggies are still the main event at every meal, even breakfast (especially breakfast).
AVOID: Wheat, Kamut, Spelt, Barley, Rye, [& Oats more most, see added post below about that]
Barley is in a LOT of products. A lot. Avoid. Even a trace is too much. Yes, even a trace.
Two examples of "processed" items that can work in moderation: Tinkyada Pasta (made from brown rice) & Mary's Gone Crackers (crackers, not the cookies)
Best to avoid packaged goodies marked Gluten-Free if they still have alot of additives and refined flours. Refined flour of any grain = sugar hit to the body.
While thought of grains, many of these below are seeds, grasses or legumes. Small amounts are best, along with meal. Best not alone.
Gluten-Free and in their WHOLE form in small amounts along with lots of veggies, these are okay for most. If Candida is rough, Wild Rice would be the best of any of these as it's more woody in its cellular structure.
WHOLE is best as the glycemic index is best that way, they stay COMPLEX and carry energy through longer for a body and take longer to digest. The fiber also helps and all contain great nutrients.
WILD RICE (a grass)
RED & BLACK RICE varieties (Brown on occasion).
MILLET (a seed)
QUINOA (a seed) Regular, red & black varieties
BUCKWHEAT (it's really a legume)
AMARANTH
TEFF -
Posted by poppy (Member # 5355) on :
If you had said "sxs de la guerre" that would be symptoms of the war in French....pretty apt for lyme treatment.
Posted by Lymetoo (Member # 743) on :
Keeb.. add OATS to the NO list above
Posted by Keebler (Member # 12673) on :
- Ohhhh. I thought I missed one. Thanks.
Yes, Oats are on the "no" list for most because they are nearly always contaminated with wheat unless specifically labeled that they've been processed in a certified GF facility
and
although the gluten in oats is different from the gluten in wheat, many - many - with gluten issues also have issues with oats.
Especially for those who are ill, it's vital to avoid oats until way better and then it may be able to be sorted out.
And, for those others in our lives who eat oats, Steel Cut are the best or the very thick ROLLED. Never instant. They need to take at least 5 minutes to cook.
Those quick cooking and instant ones are just a blood sugar attack waiting to happen. -
Posted by Keebler (Member # 12673) on :
- Buying food from BULK BINS ?
Not a good idea for anyone with gluten issues - UNLESS the store can absolutely positively guarantee that the bins are all filled in the back and the GF items are all filled in a certified GF "clean" room - and the staff are all also "clean" to load the bins.
DELI ?
Same there. If a dish that would naturally be gluten free is prepared in the back of the store, in their deli department or kitchen it may not be GF.
I just found this out with my natural foods store. I was told when I called to ask about a rice wrap sandwich that a friend had brought over for me the previous day that
"Yes, the ingredients are gluten free but we have flour flying all over back there. The cutting board is the same one used to cut wheat bread . . . We make our own bread. . . . Nothing coming out of there is really GF"
Then I called the store manager and asked if all the GF Turkey dinners I've had over the years from there were really GF or not. She was flustered and said that they cannot have their own GF room as they require separate air vents and so much more work.
Nice to know now. No wonder I've had more seizures after those holiday meals that I thought were GF but were not.
RESTAURANTS?
Same thing. Many are not advertising they offer gluten free pizza or other GF Foods. NOT SO - UNLESS prepared in a certified "clean" space.
If flour is literally flying around (as flour does) or on an apron or cutting board -
if the AIR VENTS are not separate - it's not GF.
Sorry. I can't say I've come to terms, totally, as I just became aware the whole foods market deli is not safe, afterall. And that makes me very angry. Very.
While I've not been able to go out for years restaurants are just not on my menu, anway. However, for the principle of it, if a place advertises GF, it should be so. Do check before going.
All this sounds WAY too much to manage. I know. Still, I found out the hard way that I have no wiggle room . . . it's my life (and gluten always triggers seizures for me) so I just have to take up my alertness another notch (again).
And, really, now years into this, I do not miss anything about wheat. I nearly died a few times from the trouble with my stomach, too many ambulances had to pick me up from my pretzled position from eating a pretzle. But no one clued me in for years and years.
So, yes, absolutely, indeed, it IS worth it to take these precautions.
If you enjoy eating out, scout out options at the local celiac support groups.
I mentioned my whole foods market deli is not GF, that is not to be confused with Whole Foods Market, however. It's just the store that Whole Foods modeled theirs after and it seems so silly to say natural foods store as all food SHOULD be natural. A "whole foods" store just seems more accurate.
I do not know if the company, Whole Foods, has a certified GF food preparation room or not. And that could vary location to location.
If any sense of deprivation comes upon us, all we have to do it propel ourselves way back in time -- or even across the globe today (or over a few blocks) where people have no food or have to go out and forage it.
We don't have to plant, tend, harvest, clean, etc. All we have to do is be careful with our choices and prepare it. There are so many other foods that will nourish, nurture and delight us. -
Posted by KentuckyWoman (Member # 38894) on :
Thank you all very much.
I admit, I'm a bit overwhelmed with trying to learn all the ins and outs of what to eat and what not to eat.
I recall someone posting on here about how he was afraid to eat ANYTHING bc he felt like it was harming him. I confess, I am knowing how he feels. I even gave advice to "do the best you can learning along the way."
That's my protocol anyway. I get overwhelmed with too much information for me to process.
That is NOT a complaint by any stretch.. I'm GRATEFUL for all the links and info.
Breaking from "detox" i meant that i was not taking the UltraClear Plus powder, Glutathione, which catches all the junk in the liver, and "eliminates" it. I still do my Epsom Baths.
Liver support I switched to another powder called "Beyond Whey" by Natura. My LLMD gave it to me. It may not necessarily be for liver support but it is for immunity building up. Plus I am taking Mistletoe "coctail" injections.
Back to the foods education. I have tried to learn a few new things each week. Trying to learn what "gluten free" really is and how to apply that to everyday living. I do not even know if I'm gluten intolerant. I never was to my knowledge.
I don't seem to have gut issues like many.
My LLMD instructed me a few months ago to "try to eat as organic as possible." Well, I am becoming aware just what he meant by that. My focus has been on finding "pure" foods. Fruits and veggies that are organic, milks, dairies, etc.
I got "detoured" into the whole GMO issues. I had no idea!!
I remember trying to look at a label for Peanut butter yesterday. I have to remember a checklist of stuff (which I can't) 1 is it pure? No artificial junk, HFCS, additives, etc? 2 is it GMO? I don't know. They don't label for such. So I try to think now, "what's the list of highly likely GMO junk?" (I can't remember.)
I bought the jar. Ingredients: "Peanuts" that's it. nothing else. Is it organic? I have no earthly idea. (frustrated)
It's VERY hard work which I am not afraid of, but it takes time with my limitations of being able to get out and putter through the stores. It happens maybe once or twice a month for me.
I was able to get out a bit yesterday and thought I'd give "cage free" "organic" eggs a try. I've been trying to design some sugar free breads, muffins, cookies etc. that have no artificial crap, and natural sweeteners. (hence the organic eggs needed for some recipes) And trying to remove all the white flours and introducing whole wheat along with oat flour etc.
Proud of myself but also wondering if I'm just "doing it all wrong" still.
I've been doing this cycle for 4 months now. Give it all I got for a while, burn out, frustrate, switch focus to something else for a while (this month's Awareness campaigns), then go back at it when I can. This week, it is approaching the "burn out" phase and frustration.
Focusing on "bucking myself up" and not getting discouraged in the journey. Knowing it's baby steps, a little at a time. I can't change a lifetime of ignorance and bad habits in a few months.
Thanks again for all the wonderful support and understanding. I am so grateful, always. KW
Posted by KentuckyWoman (Member # 38894) on :
And this is what I stumble on first thing in my waking hours (never mind what time it actually is)
THIS is why i get frustrated.
Food Fraud.. i heard a few stories about this in the fish industry.
My injustice-hating brain screams "You can't win for losing !!"
Then I have to kick my reason out of bed and say, "get to work" and try to tell myself, "Just do the best you can. Nothing is perfect. Something will kill you in the end eventually, and just don't stress about it."
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