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Posted by Tincup (Member # 5829) on :
 
Anyone who gets feeling bad while in stores shopping.. please give detailed info as to when this happens, types of stores, how you feel exactly (detailed symptoms), how soon after you go in does it happen, what you think triggers it?

Also, once you leave.. how soon till symptoms stop?

Do you have co-infections?

Thanks!
 


Posted by greg (Member # 1250) on :
 
WOW , im not imagining things !!!

Every time i go into the bike shop that i part time at i start to feel bad, usually within 10-15 min..also borders, and target..I think it might be the bright lights..

My vision gets blurry, i get slightly disoriented, and my speach problems used to get worse (they are gone now), i also will get a headache sometimes..Once im outa there the symptoms go away ,usually within a few min.

I am positive for lyme, babesia, and bartonella....greg
 


Posted by Foggy (Member # 1584) on :
 
Oh, yeah, all the time. I'm loath to discuss this as it's a self-fulfilling professy. However, in the sprit of good research: Whenever I go into a mall, super market, Marshalls, Target, or similar big box store, I get really foggy. I think it's a combination of feeling foggy in public, which stirs up my anxienty, and the resultant increase in blood pressure and adrenaline that cause panic. A shrink told me this is a classic panic attack, yet I never had this sensation until I was "clinically" diagnosed w/Lyme. I'm trying some beta-blockers and breathing techniques to help reduce this problem.
I'm sad to say that it happens so often, that I'm actually used to it, and thus it doesn't scare me as much as it did when it first occured. My LLMD feels that it will go away as the Lyme goes away. While we're young...
 
Posted by Appleseed (Member # 26) on :
 
The same thing s happen to me in larger stores with bright lights. The foggyness and confussion comes on strong within a short time after entering. I also get tired and have blury vision. I also think that the brain sort of overloads,because of all the information being processed at once. If I have to do more than thing in the shop the same thing happenes to me,brain overload). After I leave the store my vision gets better in a short time ,but the fog and tiredness hang on for some time. It can affect me sometimes the rest of the day.
Appleseed

 
Posted by map1131 (Member # 2022) on :
 
I also have same strange feelings when I go shopping. I instantly go into what I refer to as the tunnel. I feel like I can't see the big picture. I'm only able to focus on one thing at a time. I become dizzy, lightheaded, blurred vision, exhausted. I've seen others refer to feeling funny when they shop Walmart. With me its everywhere. The other day while shopping for vitamins, it was so frustrating trying to find what I was looking for. It is so strange that I haven't even told family or friends this symptom. They already think I'm crazy from some of the things I've told them I experience. The bad part is I work for Kroger (grocery chain), and my office position is being eliminated and my only option is to work in the stores again. Now how in the world am I going to be able to handle that?
As far as I know I don't have co-infections.
 
Posted by FaithHope (Member # 1487) on :
 
The same things happen to me when I am shopping.. I think the lights may have something to do with it and the wide open spaces? I get nervous and foggy, the other day my head felt really wierd..I sort of feel like I am in dreamland.. plus my heart does wierd stuff I think because I am nervous.?? Who knows?..usually it happens at Walmart, but I have experienced it elsewhere too! (the mall), but in those cases I think it is because I know I am going to get in trouble for spending to much from my hubby!!!!!!!!! I am only positive for Lyme (at least as far as I know)
 
Posted by jen13 on :
 
That's interesting. Could be fluorescent lighting affecting your nervous system--it's known that autistic kids for instance, who have trouble processing sensory input because of innate nervous system damage--can't handle fluorescent lighting, or loud noises and so on. So lyme could have screwed up the nerve pathways.

Also, just want to make note, chemical sensitivities come with lyme and candida. When my candida was at its worst some years ago (pre lyme) I would feel sick whenever I went into ABC Carpet--a huge fantastic store that has not only tons of carpets but all kinds of household goodies, linens, couches, pillows, etc etc etc. I'd go there on my lunch hour. I now realize all those old costly rugs had mold in them.

Stores can have chemicals--like particle board outgassing formaledhyde, plastics outgassing stuff etc. You could be reacting to those too
 


Posted by jen13 on :
 
p.S. the problem for some with fluroescent lighting is that it actually flickers--not at an obvious rate your eye can see, but nonetheless, your nervous system has to handle.
 
Posted by FaithHope (Member # 1487) on :
 
Interesting! I can actually see the flickering under some lights.. its very annoying.. some offices that I go into I cannot stand to be in.. the other people don't notice it like I do though.. wierd.. and as far as the chemical sensitivities go.. I agree they come with both lyme and yeast.. I have been cheating a bit with the sugar and I definitely noticed that my overall feeling of fogginess increased and that is the ONLY thing I can pinpoint it too..
 
Posted by Zeeke (Member # 496) on :
 
I believe that this is one of the first neuro symptoms I experienced. After Vietnam, several of us were having the same experiences, but were told that they were panic attacks, even though we certainly thought that we were happy to get to a mall and did not feel that it was panic.

Over the years, it has definitely intensified and subsided along with the other symptoms of Lyme. When more severe, I get a general overall sick feeling, and have considerable problems focusing my thoughts on any particular item. I experience the symptom in large malls or department stores, and it is most intense when walking down fairly narrow isles with high shelving on both sides. Walking along looking for an item is most difficult; standing still helps, but does not eliminate the problem. Originally I thought that high intensity lighting played a roll, but have not been able to relate it to any particular type of lighting. Large arenas or stadiums do not cause the symptom in me.

Perhaps, as suggested above, processing visual information in this setting must play a roll, but even flying an aircraft does not seem to activate the symptom in me. The only other activity that has come close to causing the same symptom was driving down a long strip of highway that was lowered below grade with a high wall on each side.

And the other time I get that sick feeling is looking at a picture of Mel....OK, Tincup, so maybe that is jealousy, a different symptom.

This has been one of the most perplexing symptoms to me, so thanks for this post and for the other responses discussing it.
 


Posted by bg2711 (Member # 1865) on :
 
Well, I agree with all the above comments. My daughter and I have the same trouble in stores. Never had the symptoms until we came down with Lyme. We get dizzy, almost to the point of feeling like we will faint, legs get weak and shaky, feel very nervous, heart palps, hard to concentrate and speech becomes slurred.

I have noticed that for me it is the worst at Lowes. Wal-Mart use to be the worst but maybe I have desensitzed myself cuz I like the store. I notice every smell in stores, the lights, people, sometimes noise everything, its like all my senses become hyperactivated and I am overwhelmed. Its so nice to know we aren't alone with these crazy aggravating symptoms.

The problem is I love to shop, I don't go quite as much now because I will not go by myself cuz I am afraid of passing out. Crazy, I know. Barb
 


Posted by Foggy (Member # 1584) on :
 
It is more than just a coincidence that we are all suffering from the same exact symptom. It's not phemomena, or just panic attack 101, this is a real experience. This is great fodder for the LLMD who use clinical diagnosis as a tool when tests for Lyme & co-infections remain negative. We all can't be going crazy.
 
Posted by Foggy (Member # 1584) on :
 
It is more than just a coincidence that we are all suffering from the same exact symptom. It's not phemomena, or just panic attack 101, this is a real experience. This is great fodder for the LLMD who use clinical diagnosis as a tool when tests for Lyme & co-infections remain negative. We all can't be going crazy.
 
Posted by Tincup (Member # 5829) on :
 
EXCELLENT!!!!!

Keep them coming. I am going to try and MAKE someone listen to me and somehow try to get us some relief! This is insane and it takes so much from us that we are unable to function in normal society! And no one sees it, understands it, addresses it, or can fix it!

I am tired of this. I can't go to the store to buy food without getting more ill. I can't go get a new shirt. I can't stand in the store and pick out a birthday card.

This symptom isolates me and you from too many things. I can't go to the woods for fear of ticks. I at least want to be able to go buy food!

Keep writing all you can about how you feel when this happens... We will try to find a pattern of some sort and a way to do something about this that works.

Tell me the goofy things too... like I use to think it was cause I was getting ready to spend money.. or the walking in aisles with tall shelves around and above. Tell all.. PLEASE!!! Don't be embarrased.

It is happening to too many of us. It is making us look like freaks if we see it as individual problems... but something is happening to ALL of us posting here that is real and needs to be addressed.

Keep up the good descriptions. THANKS!!

And I see we have a new member! Welcome to Lymenet and thanks for responding!!!!
 


Posted by slpook (Member # 605) on :
 
It's called photophobia and is listed as a symptom for lyme disease. I've had to wear lavender sunglasses and baseball cap in stores-but Dr offices can be the worst with the low ceilings. Also have hyperacusis-sensitivity to loud sounds (no, not Tullio's phenomenon)more high-pitched sounds (combine Home Depot's lights and fork lifts beeping as they back-up and I hit the floor!).
 
Posted by caj (Member # 1642) on :
 
I remember when I first read posts about this happening to people I felt so relieved that I wasn't the only one experiencing it. It makes you feel like you're going crazy! I don't get it as bad in the grocery store-just once in awhile. It happens to me mostly in Target or Kmart and the smaller clothing stores. It's twice as bad in the stores that have the racks that swing free. Stores with strong smells (Yankee Candle) I avoid because those are torture. I get lightheaded, pressure at the back of my head, a foggy and woozy feeling and overall fatigue. Sometimes I get a headache and once or twice I've had the leg weakness. Since I have problems with motion sickness too it just makes it worse when you get in the car and already feel bad. I carry water with me because it seems to help a little. I have not been tested for co-infections.
 
Posted by Marnie (Member # 773) on :
 
Delete

[This message has been edited by Marnie (edited 07 April 2002).]
 


Posted by tkr_lacey (Member # 1772) on :
 
any store with flourescent lighting gave me a serious headache - my eyes would feel terible and sound sensitivity increased greatly in that sort of an environment -

so much fun.

glad I'm not alone!
 


Posted by linus922 (Member # 1036) on :
 
Hi Tincup, Interesting question and even more interesting answers. I thought it was just me. I also get the "panic attack" symptoms when I go into a big, crowded, brightly lit store. If the aisles are tall I feel like I'm in a tunnel. If there is too much merchandise I can't concentrate or remember what I came to buy. I always have to take a list and sometimes forget things that are on the list. It's almost as if things are going too fast and slipping by me. I know that doesn't make much sense, but that's how it feels.
Linus
 
Posted by linus922 (Member # 1036) on :
 
PS - I don't think it's the lights - I work under fluorescent lights and don't have those problems here.
Linus
 
Posted by Nancy (Member # 1150) on :
 
bg 2711, when I went in Lowes yesterday, I had every intention of charging wallpaper and border to redo my kitchen. I got in there and became a nervous wreck. I couldn't concentrate or think straight. I just had to get out of there. I ended up charging two curtain rods for $1.00 something a piece. I'll end up paying $15 for them. I don't have a problem shopping in the little old thrift stores. That's where I get most everything.
 
Posted by sizzled (Member # 1357) on :
 
Had this most of my life and I thought I WAS crazy!!! Well....hey,don't even go there!

Can't stand for too long,especially under fluorescents. Have orthostatic hypotension so can't look up and down or I pass out!

Need to get in and get out or I feel nauseated,giddy,sweaty,anxious,dizzy.....

I never told anyone before......
 


Posted by yahoo trish (Member # 39) on :
 
OH how familiar all these stories sound. I started having probs nearly 5yrs ago. Went in a walmart and got that echoing of voices and felt as if I were going to faint. Some passer-by helped me to the floor. i was hauled out in a wheelchair and taken to the ER. All tests were ok no heart prob a lttle low fever so they told me it was a virus. Well this kept on even when i was driving I started to get spels I call it or watching out the window of the car even as a passenger would trigger it. So no driving for the last nearly 5yrs. I have a heck of a time in stores or dr offices and now the latest thing is at dr offices I don't take elevators cause they cause me to feel like I am falling down and believe me I have ate the bottom, well now steps going down I get real dizzy and weak. Has really limited my life and is interfering in my family life as well. Stores are a nitemare usually maily do a couple aisles and hurry up. My hubby thinks I am nuts how I shop. Well at least I try. At first when this all started I didn't even go. I have not gotten a possitive diagnosis for lyme but fit the clinical criteria to a "T". A MS probable diagnosis but they have given no proof or treatment in these 5yrs figure that one out.I also can't lay flat in bed or on my left side or I lose all sense of were I am in space like a falling feeling. I am taking antivert for 4+ yrs everyday 2x. Is a bummer any ideas?
trish
 
Posted by runner21 (Member # 1974) on :
 
tincup,
a store usually wipes me out. i used to be an avid shopper. typical college student who on friday would go to the mall to buy a cute outfit to wear out with my friends that night.
the mall used to be so theraputic for me. i was known as a shopoholic, i know most woment are, but i swear everyone knew me at the mall. they used to even give me free frozen yogurt in the food court!!!
now, the mall leaves my legs weak and achy. im totally wiped out in a shopping trip. all the lights, the people, the big signs, all the movement, it makes me feel so overwhelmed. i used to feel great, the mall helped me deal with stress of finals, so i thought it would help me deal with the stress of lyme.
well.........it leaves me wiped out on the bench while my mom goes to get the car so i dont have to walk in the parking lot. its sad, but true. although, these past few days i was feeling better and then boom im lifeless again. will this ever end? i am dying to run again and start nursing school.
please someone listen to us,
runner21
 
Posted by Tincup (Member # 5829) on :
 
This isn't good for me...

I am thinking about the THOUSANDS of $$$ spent trying to get help for this stuff.. the many "specialists" who should have known this stuff.. They missed it! I shouldn't have to be here doing this. Yep.. Now I am angry.. but it isn't that unusual... I will get over it..

Anyway..

Here is an article that will help start to explain some of this stuff...

It is pretty good info and along with other stuff I am working on.. we may get some help???

I have printed here a small section only.. Read the entire thing.. rather deep.. if you would like to see more...

In the meantime.. I will keep trying to piece this together.. GGGGrrrrrr!! I KNOW THESE DUCKS ARE SUPPOSE TO KNOW THIS AND DON'T!


http://www.headachepainfree.com/NEURO-OTOLOGIC%20HISTORY.htm

Patients with bilateral vestibular loss often report that the world jumps when they walk quickly or ride in moving vehicles. They may be unaware of the association with head movement unless specifically prompted to hold their head perfectly still, demonstrating to them that the oscillopsia will resolve. Some patients don't interpret this visual phenomenon as oscillopsia and notice only visual blurring with head movements. It can be particularly helpful to ask such patients whether or not they can go grocery shopping and walk through the aisles easily. Most such patients must stop and refocus at every point of interest. They also complain of an inability to see street signs while driving in cars unless the car has stopped.

Finally, many patients complain of intolerance of visual motion. Typical complaints include an inability to walk down a supermarket aisle without feeling disoriented or nauseated. Similar complaints include intolerance of crowds (e.g., in malls or in train stations) and of large screen movie theaters. This complaint is heard most often from patients with vertigo following head trauma, but may be reported by those with other types of vestibular disease, both central and peripheral. Some patients have no clear predisposing condition. The symptom may result from excessive reliance on visual cues to motion following loss of vestibular function.

Lightheadedness should be distinguished from vertigo or visual disorientation. This term should be reserved for symptoms similar to those preceding syncope. Most patients are familiar with the sensation, either from having fainted at some point in the past or from getting up quickly after a prolonged period lying down. Associated symptoms and signs include tunneling or dimming of vision, feeling cold, diaphoresis, shortness of breath, air hunger, perioral numbness, and pallor. Syncope, by definition, is loss of consciousness resulting from a fall in blood pressure and cannot be caused by vestibular disease. Lightheadedness is presumably caused by cerebral hypoxia and may be cardiac or vasovagal in origin. Contrary to popular belief, elevated blood pressure does not cause vertigo. Hypertensive patients experience lightheadedness when their blood pressure drops, presumably related to antihypertensive medications. [24] The work-up of syncope or lightheadedness need not include vestibular investigation unless there is a reasonable suspicion of vasovagal syncope triggered by vertigo. Such cases are exceptionally rare. A history of falling is not specific for syncope as some patients with a sudden vestibular imbalance, such as can occur in late Meniere's disease or from vascular insufficiency, also can cause a patient to fall, but there is no loss of consciousness. Unfortunately, a small minority of patients who complain of lightheadedness and strongly deny any vertigo can be shown to have vestibular imbalance on examination. It is useful to note the similarity between their symptoms and those induced by caloric stimulation during vestibular testing.

Imbalance, when defined properly, can be a helpful term. It is worth explaining to patients that balance is the ability to maintain the center of gravity within a restricted range over their feet. Imbalance, then, is the inability to maintain the center of gravity and affected patients note unsteadiness, stumbling, and falling. It may be significantly worse walking on uneven surfaces or in the dark. Its presence need not be associated with vertigo, visual disorientation, lightheadedness, or any other symptom. The causes of imbalance may be sensory or motor.



 


Posted by Theresa (Member # 421) on :
 
Hi Tincup, Diagnosed with Lyme,Babs and Bart. Before I was dianosed 3 1/2 yrs. ago I noticed it when food shoping in large stores . I thought it was low blood sugar. I still have it and when I am at my worse I have to leave immediately completely disoriented. Most of the time tho, it's a dizzy , off balance, drunk feeling. Hope this helps. God Bless. Theresa
 
Posted by msenn2 (Member # 2047) on :
 
hmmm i still havent been tested yet but this is a familiar thing..this happens when i go to SAM'S clubs especially around the tires..also when im looking for fertilizers and such in the chemical sections of home depot etc..very sensitive to the smells..since i like to garden and work in the yard some of this gives me a headache--usually a migraine.i hope to find a Dr to do the test soon..so ill keep reading and watching these posts! thank you for a place to speak my mind--ha!
 
Posted by alphabet nancy (Member # 885) on :
 
I've got problems shopping in any large stores, mostly grocery stores,though. Aside from the problems with the lights, I have problems with trying to focus on items on the shelves. I can't just stroll down the isles looking at things. I have to stop, look at one thing, then move on, stop, look at another. It's as though my scanning capabilities are out of whack.
I live 10 miles from the Mall of America and I've been there only once since I got this crap six years ago. It wasn't pretty!!
I also have a problem with smells and odors. I had lost my smell completely for a few years and when I got some of it back I noticed that some things I couldn't smell made my tongue tingle. Things like chemicals, petroleum products,etc. These things seem to make me feel alot worse in stores.
Nancy from West Frankfort, I also shop mostly from thrift stores and I don't seem to have the same problems in them. Maybe because they're smaller and not so well lit and I just feel more comfortable in them....
One of the things I wrote about in my recent SS disability review was my problem with grocery shopping.
Thanks for posting this, Tincup, I feel alot better knowing I'm not alone in this.
 
Posted by ShelleyA (Member # 49) on :
 
Babesia,ehrlichia,lyme.

Within seconds...............overwhelming sense of ? dread.....loss of concentration...this sounds bad but in the late 80's and early 90's every time I went into usually a grocery store I had to immediately have a bowel movement...sorry.
Florescent lights are the problem....vision gets blurry.............and the above.
After entering the great outdoors....within minutes...maybe two...I feel much better ...go home and wonder why I don't feel as bad at home....irritating...can't accomplish anything in stores or malls.

 


Posted by WildCondor on :
 
For me it is the prolonged standing up and moving around that gets me. I have Lyme induced NMH, and prolonged atanding around knocks the $#iT out of me every time. Grrrr....

Think of all the neurotoxins in a store...mold, PVC, plastics, formeldahyde, lead...you name it, its out to get us. I'm all for the log cabin at 12,000 feet up in the Rocky Mountains. Away from all malls and society!
 


Posted by mary pat on :
 
TC, let it suffice for me to say yup, & ditto, been there,still doing it, As i'm too sick to even enumerate. Many years ago, I was know to my family as queen of shopping, I could go to 6 stores a day, now I don't leave the house alone, for 5 weeks at a time, panic & sense of passing out, faint, sweaty, hot flashes, forget entirely why I have even gone into store. Hope someone finds a cure! MP
 
Posted by cpda2 on :
 
I also get a very ill feeling when I go to a big store. I get dizzy, feel off balance, heart starts racing, legs feel like jello, and I start to feel all sweaty. I thought it was low blood sugar too. But I guess it's not. Before I got sick, shopping was one of my favorite things to do. Now I dred having to go to the store. Most of the time I send my husband to do the shopping.
 
Posted by cpda2 on :
 
I start to feel very ill when I go to a big store. I get dizzy, my heart races, my legs feel like jello, and I start to get all sweaty. I thought it was low blood sugar also. But I guess not. I enjoyed shopping until I got lyme. Now I have my husband do most of the shopping for me.
 
Posted by erinsmom (Member # 2100) on :
 
This is really weird. I've been reading posts for a while now. Just learning how to post myself. My daughter has been very ill with neuro-lyme for one and half years. She is a patient of Dr. J. in CT. Still not in school but being turored now. I have recently been hearing from very different sources that some think this could have been passed through many generations. I know my daughter was bitten by 3 deer ticks a year before becoming seriously ill. But, I question now if maybe I have lyme, my other daughter may have lyme. We have appointments mid February. My concern is that maybe I had lyme all these years with very vague symptoms. I have been diagnosed with panic disorder for 26 years now. I am taking Zoloft and have overcome most obstacles, like Agoraphobia, unable to work for many years, and paralyzed with panic in social situations, malls, etc. They say this runs in families. Humm??? Passed down from generation to generation??? My family has been plagued with cardiac problems. My brother has panic disorder, sister epilepsy (never seizured, only visual disturbances) My nephew has panic disorder. My mom and sister had thyroid taken out. Back pain, TMJ, neck pain, learning disabilities, very vague symptoms of lyme????? Makes me think that there may be some truth to this theory??? What does everyone else think of this?
 
Posted by Foggy (Member # 1584) on :
 
Do the people on the board who been cured still have this symptom? How long did it take to go away after treatment?
 
Posted by KBear on :
 
Wow-I have all these same symptoms! I get dizzy, I start sweating, my legs get weak I feel like I'm going to pass out. It definitely is worse when I'm walking down the aisle. I have to stop and stare at the floor to feel good enough to keep walking without passing out (although I have never actually passed out). I keep telling myself "you'll be ok, you'll be ok...". I always take a cart so I have something to hang on to! It started in Wal-Mart and would only happen once in a while. Now it happens almost everytime I go in a big store. Used to enjoy shopping, now I only go if ABSOLUTELY necessary.
Don't know if now that I am anticipating that it will happen, that I'm actually making it worse.?
I usually feel better once I get out of the store and sit in my car for a few minutes.
Sometimes I can also see the florescent lightd flickering-can't stand it!
I am positive for babesia.

 
Posted by ponytail (Member # 36) on :
 
Hmmmmmmm - this happens w/ me at Walmart, Kroger and larger stores. I've mostly attributed it to fluorescent lighting. Back in 1988, it was the cause of the mental health route and diagnosis of Anxiety/Panic Disorder. Crowds of people would freak me out. I'd get dizzy and break out in a cold sweat!!

As my condition has improved, the crowds bother me less but, the lighting still is a problem. At work, I've had some of my light bulbs disconnected so that it won't be so bright and it is HORRIBLE when they begin to flicker. Also, the sound used to drive me over the edge but, I must say, that too has begun to go away!!! It was really hard to get the boss to understand about the sound because I was the only one hearing it!!!

I always thought I must be the most demented person in the world because one of my favorite activities - shopping, was making me feel worse!!! I was so happy to find Lymenet and meet all the "others"!!

Thanks for the article Tincup - makes sense I think!!! I do notice the symptoms more in larger stores w/ long aisles. I tend to keep my gaze down until I get to the area I want to be!!!

I also notice motion sickness increased as I became more and more ill. If you want to send me to pukesville - put me on a carnival ride or in the backseat of a car!!! W/ the car, I seem worse when there are trees making shadows!!!

Yuk - just typing all of this is making me dizzy!!!

Sherry R
 


Posted by KBear on :
 
Driving or riding with trees making shadows makes my head spin also! Didn't think of it until I just read it from Sherry!!
 
Posted by yahoo trish (Member # 39) on :
 
Dear tincup,
Did you ever get help for these problems? Please E-mail me and tell me what they did for you and if it helped. I cried when I read this post I made my hubby come and listen to it too. I think he thought I was going nuts before now he saw alot of people have the same thing. I thank you so so much!
Hugs, trish
[email protected]
 
Posted by Tincup (Member # 5829) on :
 
Good for you!

We are getting some good responses and as I read them I feel one layer of "anxiety" melt away. We are not alone with this weird stuff. Very helpful to know. I plan to do more research to see if there could be some help for us...

I appreciate all the answers so much! Keep them coming!

OH... BTW-

Would it be helpful to do another post like this with a couple more ideas I have?

I have many of my "weird" symptoms written out in detail for documenting later... and to help me get help. Would this possibly help anyone to see this stuff.. so you could relate... or not???

You all are really helping me. Thanks so much!

------------------
If it takes all the future, we'll live through the past.

If the phone doesn't ring, it's me.
 


Posted by aries on :
 
I to have this problem also i believe its cause by the sesitivity to formaldahyde in new clothing and color dyes in most malls and clothing stores also any type of petroleum cems cause the came prblem try to walk into a new tire store with low ventilation youl think your going to die hope this helps some
 
Posted by shadow13 (Member # 1467) on :
 
Hey Tincup - great survery. I've got Chronic Lyme, Babesiosis, Bartonella H, and STILL HAVE Encephalitis.

This is perfect timing on this topic. I was in WalMart yesterday and kept getting totally distracted - thank god I had a list. The store is too bright and gets even brighter by the grocery part. I have gone to the checkout looking green more than once. Also the other day I kept tipping over - sorta felt like my old drunk days when I couldn't keep my feet under me. I also went to Borders - I find it relaxing with all those books. Well, not yesterday. I just grabbed the book I went for and got the hell out of there - kept tipping over again. Usually I can spend hours in that store. Target is the WORST store - all those lights and that color RED. Red is so hard on my eyes and the bright lights make me feel like my eyes have been dilated - everything starts getting all fuzzy. If I have to go in there, I just grab and run. But I really to try to avoid Target. I also used to like to walk the mall because it was so different from the one back home. Now I avoid it completely. Can't stand the bright lights, the smells from the food courts, and all those people! I do have panic attacks, but these "symptoms" in the stores do not have any connection to the panic.

Once I have left the store and gotten into my car, I'm usually pretty good after 5 or 10 minutes. Hope this helps.
 


Posted by Foggy (Member # 1584) on :
 
Tin, clealy a LLMD & a major pharmaceutical or biotech firm need to team up for a research protocol. Any thoughts?
 
Posted by MaryMi (Member # 459) on :
 
When my Lyme was at its worst...I had to stay out of stores w/florescent lights...Wal-Mart was the worst. I would get very woozy and felt as if I was going to fall over...hated this...sun glasses would help a bit.
They better get working on a cure for this stuff....we're bad for the economy...or is this a cure for women that like to shop till they drop....sounds like many here drop before they shop. I HATED this symptom...mostly gone now.
Mary

[This message has been edited by MaryMi (edited 26 January 2002).]

[This message has been edited by MaryMi (edited 26 January 2002).]
 


Posted by Nancy (Member # 1150) on :
 
Might I suggest taking a valium before going shopping. If you can't handle a whole one. Take half. Generic valium is really cheap.
 
Posted by slpook (Member # 605) on :
 
It's the lights-parents switched to "energy efficient" lights (fluorescent for home) and had to get rid of them because when I came over, getting sick like I was in a store.
 
Posted by Gaeltick on :
 
Tincup good topic. Haven't really thought about it before. I have severe sun sensitivity so I always have sunglasses on. Now that I think about it I shopped wearing my sunglasses this past Christmas. Hmmmm...
 
Posted by Foggy (Member # 1584) on :
 
I have florescent light in my basement and you betcha', I get the same foggy feeling when I'm down there. I though it was some kind of strange allergic reaction to mold growing in the basement but my allergist thinks not. Yes, it's silly, but when I enter the basement w/a flashlight, I don't get foggy. Prior to my Lyme fiasco , I'd spend hours down there playing music with no symptoms.
 
Posted by Tincup (Member # 5829) on :
 
So...

I am not TOTALLY crazy! Or alone! Good news!

Now.. to figure it all out.

I have spoken with a person (brain specialist) who said it was mostly the lights. There is a cheap florscent bulb.. and a better one (natural spectrum). That WOULD explain why some buildings cause this.. others may not. I do notice as long as I can see ouside... I do feel better. Especially in doctors offices. I always stand at the window and stare out and am almost pressed against the window.. as if saying.. give me air...... Didn't know why till now..

I am VERY interested in "fixing" this.. and it is "neuro" or something "messing" with the brain through vision... and perhaps our other senses. If we can temporialy block these senses from picking up the triggers that cause this.. perhaps we could actually go to a store and have less trauma.

I don't know if it can be fixed.. but we can sure try. I do think the smells and sounds also play some sort of a role in this and the chemicals.. but I think if we can at least get the "lighting" aspect addressed.. more of us could possibly do a bit better???

I had started some research years ago.. but it got buried in the pile...

I had found that "rose" colored sun glasses might help keep the light frequecncy and "flickering" from causing the problem. They do help me.. but not enough to make the trip "comfortable". We should be able to do better.

I would LOVE to get some reseach articles together and make a "fix it" type list..

Which bulbs to buy (we could at least fix our own homes or rooms, or office spaces where we have problems)... what measures we can use to find SOME relief for now... A list of providers for the stuff we may need to cope.. EVEN a list of stores we might contact and NICELY ask that they consider the problems when changing bulbs for instance or building new stores.

I would also like to see a letter sent to these stores.. or the main head quarters.. that would explain the problem and ask that employees be aware this COULD happen in the store so we could have someone to address who understood.. and so we could leave our basket there while we took a "break" outside so we don't feel like freaks...

Do I have any "takers" to help with the research? I am bogged down with several other "projects" at the moment.. although this area interests me...

Let me know. And THANKS for replying... See what we CAN do when we work together??? Today we are one less "crazy" in the bunch! HA!
 


Posted by jen13 on :
 
ErinsMom--I don't think you all passed lyme down through the family. I do think, however, that there are genetic and neurologic vulnerabilities that can be inherited, and that make one more vulnerable to neurolyme. I.E. the infection does greater damage because the nervous system was, at baseline, not robust.
 
Posted by just don (Member # 1129) on :
 
Here's my situation. I got that getting a cold sensation in Walmart superstore,(They have that hi intensity lighting not flourescent) But it was especially bad when I walked down the soap(laundry) isle. It would be excruciating. Also the tires and especially in a tire store when thats all they have. When young I thought I should buy a mobile home and looked at a lot of NEW closed up HOT mobile homes and I could barely make it back out the door my eyes BURNED so bad from the formaldahide/chemicals in the wood and carpet. But the strangest is when I visited my mother-in- laws house when I was married a few years ago and spent a couple hours there . Had to pull over and let wife drive home numerous times because I was just too sick. That is before I knew what I know now(disease). I always attributed it to being allergic to dogs and cats of which she had in the house. Also wreaked of smoke, which I cant stand, but I think she does have flourescent lights in her kitchen. So the combination of all those things really wiped me out. I never made it much of an issue because I didnt want to start WW3, but it was a real problem. --just don--
 
Posted by Jandy (Member # 1771) on :
 
I missed this post when it first came through, but will add my two cents now. I get increased symptoms in many stores, Target in particular (maybe it's something about all those red bulls-eye signs everywhere!). Home Depot and hardware stores are pretty bad too. I have trouble at the grocery store, especially in the cleaning suppy aisle (the odors) or the cereal aisle (too many overwhelming colors). I feel spacey, other-worldly, my heart beats irregularly, my legs feel weak, as though they belong to someone else,I get nauseated, chilled, etc. etc. My family has gotten used to me having to lurch for the car at a moment's notice. I'm always afraid store security will think I'm a shoplifter when I go racing from the store! My guess is that these type of reactions probably can happen with many conditions that involve CNS dysfunction.
 
Posted by lphil444 on :
 
I agree with everything said I too have this problem. Before I knew I had lyme disease I was diagnosed as having chemical sensitivity because of this. I have many friends who think their illness is chemical sensitivity, but knowing their history and where they are from, I believe many of them in fact have lyme disease. It is not only stores that bother me but all kinds of chemicals, perfumes, fabric softeners etc. If I sit by a campfire for a couple hours the next day all my lyme symptoms flare badly. I notice when I'm feeling better overall I'm not as sensitive to these things. Phil
 
Posted by pab (Member # 904) on :
 
Tincup,

Since Jordan is 11 and doesn't feel good, he doesn't go in many stores.

I think Jordan may feel like this at school. He is only going to school for 1 hour a week at the present time. I know that the lights and noise bother him and he feels much better at home.

Jordan has Lyme, Bartonella, and Babesia.

Peggy
 


Posted by WildCondor on :
 
I made a BIG mistake in going into, of all places for a Lymie with neuro symptoms to go, to the Mohegan Sun casino. Smoke, bad air, lights, noise, people everywhere, sensory overload. It only took 1/2 hour before I was dizzy, lightheaded, had bad anxiety, was shaking like crazy and got a wheelchair and got he heck outta there!
 
Posted by Foggy (Member # 1584) on :
 
Condor, you probably saved a fortune in the process!
 
Posted by MADDOG (Member # 18) on :
 
Here is what it is!! All stores have on hand a large supply of lawn chems.even in the winter they are in the back of the store.The chems are tested separatly,but when bug killer ,weed killer and fertilizer are mixed they become a terrible nerve toxin.The chem people don't care about human life they only wan't to make money off of the great american thing (keep up with the Joneses)my yard is better than yours.So the store is full of the baggs of nerve toxin,and the vapors off of it.I admire a yard complete with clover and dandelions,and mole hills.(That kind of yard is owned by a very intellegent person).My thing is a chem free environment and i hope my neighbors hate my yard,if they want to see something they can look at my bare ass mooning them,over my chem free lawn. MADDOG P.S. a real yard has chickens on it and guinea hins.All the bug killers you ever need!!
 
Posted by WildCondor on :
 
Maddog is right! I still want a guinea hen! About 10 of them to eat the ticks!\Where to get guinea hens!

You can put dandelions in your salad too! yummy!

I will never put chemicals in my lawn, when I have a lawn.
 


Posted by sizzled (Member # 1357) on :
 
Maddog,you crack me up (no pun intended!)

There was a full moon on Monday night. Was that you?

Hey, I just remembered reading somewhere(brain freeze) that one of the symptoms of Lyme WAS seeing 'starlights' around oncoming headlights. I had this before getting tx. It got progressively worse until I couldn't drive at night because I almost drove off the road being blinded by oncoming lights.

My nonLyme friends got angry because I wouldn't drive at night.

It is better now, although I have to admit to not driving at night that much anymore.

My point is is that if you have neurological Lyme then even the eyes being able to adjust to light can be affected.

Fluorescents make me drowsy and I actually have fallen asleep from waiting in a room with them on.

You can buy full spectrum light bulbs but they are pricey since they are still offered mostly in health food stores. Up here in pricey land (NY) they can go for as much as 16.00 a bulb (60 watt)!!!!!!


 


Posted by Zeeke (Member # 496) on :
 
Count me in on your number count for experiencing illness in the stores. I can stay in wal-mart about 20 mins. before I start feeling woozie. My impression was it might be neurological--maybe a light problem, or how the light affects the eyes, or the periferal vision sending messages to the brain. I also sometimes get it driving down narrow roads with overhanging trees, and light shining thru the branches--the faster I go the sicker I get. I thought this was my immagination, but I haven't shopped for any length of time for awhile now. I thought maybe with all the money I could potentially spend in the store, by being there for any length, my conscious was bothering me because this is money that could be going to the "DUCKS" who could save me from this horrible disease. O.K. bad attitude, I know. I am going to spend some time researching this, though. Thanks for bringing it up.
 
Posted by slpook (Member # 605) on :
 
I think you can actually ORDER the guinea hens! A neighbor (around the corner) has them (we are all on approx. 2 acres-yup, 1 of mine is all woods complete with an over run population of deer!) and yes, they eat the ticks, BUT they are VERY loud at times. Doesn't bother me, don't sleep much even though exhausted, but I know others have complained to no avail since we're zoned for farm animals if you have over an acre
 
Posted by mom&2lymebabes (Member # 1690) on :
 
hi there, it is called Sensory Integration Dysfunction, www.sinetwork.org. I now have it because of lyme and since both of my children were born with spirocetes in their blood they suffer from SI Dysfunction. check out the above website, great info and understanding.
 
Posted by KBear on :
 
Hi! I tried this link and it wouldn't work until I took the dot off the end of "org".

Interesting site, but I didn't have any of these problems until I got lyme, and this seems mostly related to children.
 


Posted by gusgus260 (Member # 2120) on :
 
Hi Tincup: Better late than never. I came back here because this is one of the problems that hasn't gone away with oral doxcy. so I'm studying it and reading up on the real life cases of it. What a help it is! Thanks Tincup, and everyone else who responded. >I never had this problem before. I got it right away, as I was coming out of the 'Flu like" symptoms at the onset of the illness. It happens most in grocery stores, walking down the asles. Does not seem to bother me in Home Depot, so maybe it's a guy thing. Thank god for the little things Fluoresent lights seem to trigger it more. I got it from sitting quietly in a bank for 45 minutes this week (the CSR is from Nantucket,RI, a real hot bed of Lyme- small world, we're in FL and it's the reason they moved, safety- LOL). In the grocery store it comes on steadily, and incapaciates me in about 15 - 20 min. Detailed symptoms are - ever been sea sick? Just like that, w/o the vomit. No messy clean up >Headache, nausea, dizzy, light headed, mind functions pretty much shut down. Must close eyes for relief, and lay down for improvement. Slow recovery from several hours of laying down. I think it is triggered by the type of lighting, as incandesent does not bother me at all. It seems to be accelerated by increased visual imput and processing. Walking in grocery store brings it on fast and really bad. The same lighting in a bank took 45 min., and was a milder attack of the same thing. I was just able to get out before it got too bad.
 
Posted by Tincup (Member # 5829) on :
 
Wow.. look at all the responses! Wonderful!

And guess what? I have been researching and working on help for this problem.. and I am 90 percent sure I have found it!

I have actually.. for the first time in YEARS.. been in the stores to shop.. and I took my time.. and I enjoyed it! I went back three times in ONE day to one store! I almost cried. I haven't been in a store in YEARS without having BIG problems! It was so wonderful!

Yippee!!! I can't wait to share. And the "cure".. no not cure.. but HELP.. only costs about $5.00 a month! And it is SO easy!!!!!!

BUT.. I am testing different ways to do this and a few different products to see what works best. I will be able to give several suggestions.. and so far.. all of them have worked for me. Some have worked better than others.. some a bit easier than others too.

I want to be sure I have it all right.. and have ordered a few more tools and things... By next weekend I should be able to start a report back to all and HOPEFULLY this will work for you!

WARNING: Your family may not be all that happy with you. I have spent more $$ in the past couple of weeks than I have spent in a LONG time! I actually bought stuff.. then went back the next day to return it. Normally if it ain't right.. I am too stressed to go thru that process.. so I am "stuck" with the merchandise. I am also not sure how to buy stuff. Too much, too little, what to get? Anyone need a few night gowns?

This is so fun! Hang tight. I will let you know all the details later. I am not trying to keep you waiting.. really! I just want to do it right and it takes time and trial runs and experimenting.

YES! I am VERY excited.
 


Posted by vj (Member # 1934) on :
 
Infections affecting the brain and CNS cause encephalitis or swelling around and in the brain. This causes dysregulatin of the limbic system and hypothalamus which leads to tons of symptoms, including hypersensitivities. This can occur with any or all of the five senses such as visual, auditory, etc.

Check out the symptoms for Environmental Illness or Chemical Sensitivities (brain injury due to high level toxic chemical exposures) and see if you can relate. These poor people are some of the sickest I have ever seen.

If you have problems especially in malls and department stores, you can bet you are very sensitive to the chemicals in the clothes (as well as the rest of the store).
A lot of formaldehyde based chemicals are used to treat new fabrics. I usually get very spacey, have more trouble concentrating, increased fatigue or sometimes a little manic, and eyes get red and burn. Looks like I have been smoking pot they get so red!
VJ

[This message has been edited by vj (edited 16 February 2002).]
 


Posted by Tincup (Member # 5829) on :
 
OK.. back as promised. Here is the "scoop". Hope it helps. I am also posting this on a new site for easier reference.

I have had some very remarkable improvement in a number of areas since I have been
seeing a new doctor who specializes in treating neurological problems without
medications. There are only about 500 of these ``specialists'' world wide.. and you may
be able to find one near you (see info at end of the post). They have helped me VERY
much and I am able to do things now that I have not been able to do in years (I have been
going for two months now at an average of once every 5 days due to the drive I have to
make). I will copy a section of the report that the doctor just completed at my request for
insurance purposes to show some of the areas where I have seen improvement...

``XXX has been receiving neurological rehabilitation in my office since late
December 2001. She has found this to be helpful, as it has allowed her to
achieve a higher level of function and reduce her pain. This is vital, as
she is unable to take many previously prescribed drugs due to allergic
reactions and multiple side effects.

XXX has improved in areas of gait and station, spinal ROM, aspects of
vision, cognitive function, smell, and respiration.

She has been given therapies that she can do at home including: Gait
training exercises, aromatherapy, vestibular and cerebellar activation
techniques, visual exercises, auditory stimulation. All therapy is to be
done so as to not exceed her physiologic limits.''

In plain terms.. this means I walk better, see better, am less dizzy and ``fogged'', my
balance is better, my memory is better, and my range of motion is much better. For
example, I can now lift both arms over my head.. the first time in years. I now can carry
a purse which was impossible before. I can shop till I drop and have been in stores all
afternoon and have taken my time and enjoyed it. I can breathe better due to minor
adjustments to rib cage, diaphram and sinuses. I am thrilled that I now WAKE up when I
get up in the mornings. I use to have a severe down time of several hours in the morning,
but now I get up and am functioning much sooner most days. Not all days mind you.. but
having a few days where I have good waking here and there are great!

I am physically stronger and have more stamina. I still have a long way to go of course,
and we are not sure how much functioning I can regain, but if I had no more
improvement than I have already had, it would have been very worth while. Insurance
covers the visits and they also take Medicare. They have written two reports for me (one
was 4 pages, the other 5 pages). I would say 90 percent of the improvement is from
stupid little exercises I do at home that help the brain and body work together. They are
flexible with the appointment times and rarely have I had to wait more then 3 minutes to
get in to see the doc.

I suggest anyone with neurological manifestations of Lyme seriously consider having one
of these specialist evaluate and treat you. It is NOT a cure for Lyme, as they use no drugs
and do not interfer with your protocol or current medications. It is a repairing of the
neurological (brain) functioning which helps lessen my misery and allows me to function
and be able to accomplish more than I ever thought possible. It is not to be used as a
substitute for a LLMD.. only as an additional step towards wellness. The worse off you
are.. the better chance for success.. in my opinion.

Though this doctors help I learned to use peppermint oil as a brain stimulant. I then
experimented with this concept and was able to work out a ``plan'' that allows me to
shop like a normal person again!!! I am thrilled!!!

For those who are having difficulty with being in buildings without panicky or strange
feelings, I think the Lyme community may now have a solution that will help curb or
lessen the problem. I have been researching and conducting my own unprofessional
experiments and have come to some new discoveries and conclusions. You know I am
not a doctor.. and my research and experiments are limited to what I have been able to do
on my own and are by no means sanctioned or supported in any way. This is only my
opinion and my ``hoping it works for you too'' plan.

If you would like to try these ideas.. please do. I would ask that you also report back on
your experiences. If you find some of the approaches to work better or some that don't
work at all, please make note of it and let me know.

The plan:

To prevent that panicked or brain fogged feeling while in stores.. try any or all of these
methods. I also use these remedies for other times when brain fog/panic hits and I have
found some of them help make my thinking processes better. I still have times when
nothing works great.. but find I am much improved overall.

The main items you will need are:

A bottle of pure peppermint essential oil (or substitute such as an Olba's All Natural
Inhaler), eye glasses with a true ``rose colored lens'' or ``yellow'' lens, and some strong
peppermints made with real peppermint oil (Altoids Peppermints or Extreme
Peppermints both can be found in most stop and shop stores).

1. Peppermint Oil- Purchase a small bottle of a good quality peppermint oil. Place a
dab under your left nostril. The peppermint oil stimulates the brain and for some reason
stiffles the reaction that is normally experienced while in stores. I have tried this method
and truthfully, it isn't bad if used at home. However, trying to apply peppermint oil to
the edge of the nose while out and about is rather messy and the oil tends to drip and be a
bit sloppy. I have found the Olba's Natural Inhalers (cost about $4.00) to be very
effective as a substitute and much less messy. The main ingredients are peppermint and
other natural oils. They can be used as often as needed (not addictive) and purchased
on-line or at some Health Food stores.
Olba's products from Penn Herb (This is the only licenced importer of Olba's products in
the USA):
Look to left of screen and scroll down to Olba's products and click... Look for info on
Pocket size Inhaler.. $3.95 http://www.pennherb.com/cgibin/herbstore.cgi
To order Olba's Inhaler: http://www.pennherb.com/Business/Customerbusiness/Customerbusiness.htm
If you choose the Olba's Inhalers, take a deep inhale in the left nostril about 10 minutes
before going in the store (don't be afraid of it like I was at first.. inhale). Carry it with
you in your pocket. Use it again just before you walk in the store. Use it again at the
FIRST sign of discomfort, don't wait. I also use a back up of the Altoid peppermints as
needed and chew on them the entire time in the store. It seems if I keep sucking on the
peppermints I am less likely to need the inhaler.
I have found this plan helpful while driving also. I now keep the mints next to the
computer, in my vehicle, and in my pocket. The small tins of mints cost about $2.00 per
tin.
I have tried Halls Mentho-Lyptus Ice Blue Cough Drops also which can be purchased for
under $2.00 in the dollar stores (Just bought several bags for 88 cents each on sale at Rite
Aid.). They work very well, however, they are medicine and I am not happy using them
on a regular basis. They did help with the sinus congestion when I needed help. I have
also used Atomic Fireballs candy which do the trick, but again... not on a regular basis.
They are not as effective as the mint oil products and as mom said.. the candy will rot
your teeth.
2. I also wear rose colored prescription sun glasses when going into stores. Through my
research it appears that yellow colored lens will work equally well, however I have not
tried them. I purchased a very cheap pair ($8.95) of yellow colored glasses from a local
Rite Aid Store.. however.. my eyes are so bad.. I can't use them. I must have prescription
glasses or I just can't see. If your eyes are good enough to see without prescription
glasses.. this may be an idea to try. The rose and yellow colored lens stop the eyes from
picking up flickering of lights that can trigger an attack. It is sort of like a dog whistle.
Normally, humans can't hear the high pitch of the whistle but dogs can. Those with
neurological damage can sometimes ``sense'' the flickering of the lights that others would
never notice even though they may not realize it. Rose tinted reading glasses may also
help those who have trouble with the computer screens. Mine have been rose tinted for
years (since I first looked into this problem) and I seem to not have this problem, ever,
when it comes to looking at the computer screen.
And it really is that simple. I have tried these suggestions and have yet to be unhappy
with the results. I am now able to stop at a store on the way home and go in without
``freaking out''. It has made my life a bit nicer.. and I am hoping it will help you too. I
am anxious to hear your comments. Good luck!
If you would like help finding a chiropractic neurologist closer to you.. there are some
listed at the site below. I do recommend giving them a try.

To find a Chiropractic Neurologist...
http://dendrites.com/contacts/dacnb_1.html
 


Posted by Tincup (Member # 5829) on :
 
See post on peppermint oil uses too.. Interesting...

------------------
If it takes all the future, we'll live through the past.
If the phone doesn't ring, it's me.
 


Posted by beginnerlymes (Member # 2130) on :
 
Tincup,
Here's one for ya... Our hockey arena just had new rubber matting put in the lobby and the smell of either "it" or the adhesive that was used to put it down with has been bothering me - makes me weaker and drained. This was put in right when I was diagnosed and having first symptoms - but didn't believe they were related until now. I still feel a much heavier sense of symptoms when I enter the building....go figure.
Also, My lights in my office were replaced with energy efficient flourescent lights and I do feel rotten at work - go figure!!!
Shelly
 
Posted by beginnerlymes (Member # 2130) on :
 
Tincup,
Here's one for ya... Our hockey arena just had new rubber matting put in the lobby and the smell of either "it" or the adhesive that was used to put it down with has been bothering me - makes me weaker and drained. This was put in right when I was diagnosed and having first symptoms - but didn't believe they were related until now. I still feel a much heavier sense of symptoms when I enter the building....go figure.
Also, My lights in my office were replaced with energy efficient flourescent lights and I do feel rotten at work - go figure!!!
Shelly
 
Posted by Tincup (Member # 5829) on :
 
Bringing this up for my friend...

------------------

My Tincup runneth over with whine.
 


Posted by ArtistDi (Member # 2297) on :
 
I had that same experience at WalMart's. All
of a sudden the lights seemed to get too
bright, and I almost fainted. At the end of
this feeling, I had a panic attack for the
first time in my life. By the time I arrived
home, I became quite ill. I have not returned since, but now wear sunglasses in
the department stores, which seem to help me.
 
Posted by c.lee (Member # 2336) on :
 
thank you so much for bringing this topic back to the surface. i am new here and might not have found it otherwise. thank goodness i'm not crazy after all. it feels so good to know its not just my imagination. i used to have a great deal of difficulty going across wide open spaces or large tall ceiling stores such as home depot, sams club, bj's, lowes, concert arenas, movie theaters, malls etc. i would get very disoriented, dizzy, then rapid heart rate, sweaty/clammy, fell like i was going to fall. i could only go into a store if i had someone with me to hold onto when this happened. sometimes i would try holding on to a cart. whenever this imbalance feeling started i would have to stop walking, rub my neck because this too tightened right up like a drum, and stare at a fixed lower placed object for a few minutes to try and regain my bearings. once when i went to a concert arena, my friend hadn't realized our seats were up near the ceiling with a steep drop off. i thought i was going to die. had to have my friend and brother go to management and get our ticket seats moved to ground floor in a hurry. my brother almost had to carry me out of my seat. when i go to a movie theater i can not sit higher than the fifth row or i get disoriented and dizzy and sweaty. this went on for years until finally in 2001 i convinced my md to prescribe antibiotics. and now knock on wood, things got a little easier, though i very carefully check out my seats in a theater or arena to this day. this was always a very scary feeling to me. and to any one else i would explain this to, they just didn't get it. so its so nice to know i am not alone. i also went for vestibular rehabilitation, but i truly believe it was the antibiotics that helped me so much. thank you for bringing this back to the surface.
 
Posted by SandiB (Member # 1557) on :
 
Have had incidences in the past when I was working under fluorescent lights, never stayed more than a month or two on these jobs. First, my eyes would start to bother me....get a burning feeling, turn red, then as days went by, I had trouble focusing. Several times I went to eye doctors, and they would examine my eyes and say they were fine...give me eye drops and send me home. I would try to stick it out, but then I would start to get sick to my stomach. Thought since I had been diagnosed with lupus that
it had something to do with that disease.
Also, ever since I was a little girl I have been extremely sensitive to smells....my mother use to get exasperated with me complaining about a store smells or a house smells, or certain foods smelled. Now that I have been treated for lyme and am better, I don't notice this happening anymore.
Hope this helps your research - Tincup.
SandiB
 
Posted by cyboman (Member # 2359) on :
 
This sounds like multiple chemical sensitivity, a common side-effect of neurotoxin exposure. Lyme spirochetes pump out neurotoxins. Removing the neurotoxins should help; according to "Desperation Medicine" by Shoemaker, the neurotoxins do not leave the body even if the bug is dead. Cholestryamine is supposed to help remove the toxins; it's a great book by an MD with alternative medicine leanings.

I hate flourescent lights and noisy environments; they make me agitated. I do get foggy in many stores; I assume it's from outgassing chemicals from all that new plastic/formaldehyde crap. Carpet, paint, and detergent sections are the worst - I hold my breath through them and am pretty much fine.

BTW, I am also slightly autistic (asperger's syndrome) which makes me sensitive to extremely noisy environments anyway.
 


Posted by primcol (Member # 2269) on :
 
I gradually gave up large stores entirely.
I never knew why. I did not get nervous
or was not bothered by the lighting. I just
had the overwhelming urge to get out of them. Eventually I realized that casinos
had a similar effect and so did schools
where I used to work.
I thought it was because I could not stomach
being with people so alien to myself. I love the company of people but can tolerate them in large groups .Little by little I came to realize I was not like people in general....they
all mingled about without a care in the world
and patiently looked thought all the stuff.
I felt great impatience with crowds of people.
I somehow new that I was not one of them.
In large stores I feel like I am trapped
in a monkey cage a the Zoo....and not
being a monkey felt I a strong sense of
disconnectedness...shoppers are not
lymies....They are not the same species as us.
Lymies are no longer fully human I believe.
Like in the movie "the fly" we are now part
spirochete on a molecular genetic level.
For some reason spirochetes dont like crowds.
Years ago I heard a song by the kinks,,,it
was called I not like everybody else...I
was fascinated by that song...It was sung to
us...Download it from limewire..It think
you see what I mean.
 
Posted by cws3333 (Member # 794) on :
 
Dear Primcol,

Thank you for your vivid description of your feeling of alienation from others when you are in stores and crowds. I am sorry that Lyme has affected you in this way.

I have heard others describe that they feel that they have lost their humanity, too, as a result of Lyme disease, but they meant that in a completely different way than what you have mentioned here. One of the things that they sensed was that they no longer were always able to be fully responsive to the emotional or moral requirements that a particular time and circumstances demanded- that there was a disconnect between their understanding that something needed to be attended to and being able to act accordingly- a failure of will. This phenomenon goes against the philosphical work of thinkers such as Victor Frankl and others who state that the one thing humans always have freedom over is that we can choose how we respond to circumstances. The deterioration of this function, which gives dignity and meaning to our species, is therefore utterly dismaying to someone who senses this loss. It implies a loss of selfhood.

What you describe as a loss of humanity is understandably clearly very distressing to you, too. I just wanted to clarify that the sense of loss of humanity that patients experience with Lyme disease is apparently sensed in quite different ways.

I hope that with time your symptoms will improve and that you will again feel more connected to others.

cws

[This message has been edited by cws3333 (edited 05 May 2002).]

[This message has been edited by cws3333 (edited 05 May 2002).]
 


Posted by Tincup (Member # 5829) on :
 
To the top for newbies...

------------------
Please don't feed the ducks!

 


Posted by Liz Hallinan (Member # 2365) on :
 
My husband has these problems and he doesn't have lyme! He can't stay in stores more than 10 minutes or he freaks out, his eyes hurt and he gets exhausted. He thinks it's dust allergies because he works under floresant lights all day.
Liz
 
Posted by Tincup (Member # 5829) on :
 
Bringing it up for Jimm...


 


Posted by Tincup (Member # 5829) on :
 
up for new member
 
Posted by Rose (Member # 1882) on :
 
quote:
Originally posted by jen13:
That's interesting. Could be fluorescent lighting affecting your nervous system--it's known that autistic kids for instance, who have trouble processing sensory input because of innate nervous system damage--can't handle fluorescent lighting, or loud noises and so on. So lyme could have screwed up the nerve pathways.

Also, just want to make note, chemical sensitivities come with lyme and candida. When my candida was at its worst some years ago (pre lyme) I would feel sick whenever I went into ABC Carpet--a huge fantastic store that has not only tons of carpets but all kinds of household goodies, linens, couches, pillows, etc etc etc. I'd go there on my lunch hour. I now realize all those old costly rugs had mold in them.

Stores can have chemicals--like particle board outgassing formaledhyde, plastics outgassing stuff etc. You could be reacting to those too


Flourescent lights actually flicker at a high rate of speed. Your eyes don't see it, but your brain does. So does a computer screen, which is why sitting at a computer screen for long periods of time bothers a lot of people. (This time period will vary depending on the type of monitor you have, and the color scheme you use to absorb the flicker and light intensity.)

The lighting in stores can trigger seizures. I cannot shop, though I need the bright light of natural sunshine (full-spectrum lighting). I even have to use a light box during the winter months to simulate natural sunshine. But shopping leaves me very disoriented. Plus, the lights reflect on the highly waxed floors in grocery stores or places like Target, which makes them impossible to navigate. I haven't had any seizure activity since 1997 -- mainly because i stay out of stores. If I have to go, I only run in for prescriptions, and I have to hang onto a grocery cart to keep balanced. James does what little shopping we do.

Also, the fabric (the dyes) can affect people with chemical sensitivities. And perfume. James cannot go near the perfume and cosmetic counters in malls -- and they usually place them right at the anchor store entrances, and people are spraying this poisen into the air. It makes him absolutely hostile! Different scents provoke more intense reactions.

I am very sensitive to mold. When we had an overflow in a closet area (from the upstairs a/c pan), we both got sick, but James ended up in the hospital with a life-threatening illness from toxic mold.
Love ya,
Rose in Texas

p.s. As an example of how light affects the brain, have you ever noticed the computers or TVs in the background when you are watching a news program? Do you see how the screen "blips?" That's because of the way the camera reacts to the flicker rate...it's somehow delayed. anyway, my point is that that is how your brain actually registers the image. You don't "see" it in real time, but your brain does. (Very simple explanation, here...not all that technical, I know, but just trying to give something to relate to about why we experience these symptoms.)

------------------
!!! T.O.I.L. for Lyme !!!
Teach tolerance
Overcome ignorance
Initiate insurance reform
Labor for Lyme literacy

[This message has been edited by Rose (edited 18 October 2002).]
 


Posted by Rose (Member # 1882) on :
 
I use full-spectrum light bulbs in my reading lamps at home, and because we have 24-foot ceilings, I use halogen lights on pole lamps to shine UP. Creates a lot of light, without casting shadows. It really helps to boost my energy levels.

Because I suffer from seasonal affective disorder (SAD), this is a subject I've studied for years. strangely enough, since being treated with antibiotics for Lyme, my symptoms have actually lessoned. Usually, this type of illness gets worse with age.

Having been diagnosed with encephalities, I was really worried about the upcoming winter season a few years ago, because I am usually extremely depressed and completely nonfunctional (extreme fatigue, inability to stay awake, and having to use light box 3-4 hours a day) in the winter months. But, I went on IV antibiotics in late October, and my symptoms that year were the mildest ever!

Interesting correlation? Maybe not "scientific," but I was just glad for the relief, and for the first time in my entire life (had Lyme since 5th grade, we've determined -- and I'm 55) I do not fear the winter months or the time change.
Love ya,
Rose in Texas

------------------
!!! T.O.I.L. for Lyme !!!
Teach tolerance
Overcome ignorance
Initiate insurance reform
Labor for Lyme literacy
 


Posted by Tincup (Member # 5829) on :
 
Nice ideas Rose.. thanks.


 


Posted by helen65 (Member # 2962) on :
 

Wow what a topic.
I too have had this problem.
I even hate to hear a child cry or screaming in a store. ( Im thinking awful things like why do they have to bring their kids in here...) I know bad since i have kids myself.

Lowes is like too big of a store and i feel like the stuff at the top could tumble down on me ..

the minute i walk in a store is terrible,i have to write a list and hopefully i can get it all before i feel too bad and have to leave. I ve also left a store with like 2-3 items when i needed alot more.

i used to know where everything is in a store where i frequent for groceries and now have to look in every isle for what i want....aarrrggghhhhh

Hang tough everyone, Helen
 


Posted by Tincup (Member # 5829) on :
 
Shop till you drop....
 
Posted by JRWagner (Member # 3229) on :
 
Ouch...that floor is HARD!!!

Great post by all. Good facts, good intentions, and, of course, CHOCOLATE!
Seriously, thank you!
Peace, Love and wellness!
JRW
 


Posted by Pat (Member # 293) on :
 
delete

[This message has been edited by Pat (edited 04 May 2003).]
 


Posted by tickchick (Member # 25963) on :
 
Request a link about coinfections, please.
 
Posted by troutscout (Member # 3121) on :
 
[B]I am extremely sensitive to chemicals and mold in stores, where I work, at home, etc.

I suggest to anyone who has had the serious symptoms to see the postings on www.MCSurvivors.com

this is where three of us came from...ArtistDi, FancyRatFan and myself.

There are several hints on how to combat this.

Fizzing Vitamin C is a BIG help.

Also....as the abx work into the brain they will kill keets in the olfactory and trigeminal nerve area...then release the toxins...so you get both the good and the bad...if your symptoms are hightened after a course of abx it is probably one or both of these hitting you.

Trout Scout

PS..Chemical Sensitivity seems to wane as you heal....also, reduce your toxic load...use only all natural detergents and NO FABRIC SOFTENER/SHEETS!

[This message has been edited by troutscout (edited 22 November 2002).]
 


Posted by cws3333 (Member # 794) on :
 
TS,

Good point about the scent-free laundry detergent and nixing the fabric softener!

cws
 


Posted by Tincup (Member # 5829) on :
 
Up for G....
 
Posted by mandykrystal on :
 
i have also have problems going into stores-my dr said its just panic attacks-but i feel the people are moving around me too fast sometimes its like a buzz in my head-strange i know-i do work under floresent lites but have 2 have the one over my desk dimmed or i get migraines-i am always dragging someone with me 2 stores as i cant walk around inside by myself!
 
Posted by Tincup (Member # 5829) on :
 
Up for BG...
 
Posted by Tincup (Member # 5829) on :
 
Tis the shopping season...

I thought this might remind you to get that peppermint oil and GO TO TOWN!


 


Posted by echo (Member # 2577) on :
 
Ditto, Ditto, Ditto!!
Maybe I'm not nuts after all.
I'm going to give the peppermint oil a shot.
Perhaps this is why I'm addicted to altoids when I'm at the office under the flourescent lights.
 
Posted by Tincup (Member # 5829) on :
 
Up for Kathy's friend...
 
Posted by Lymiegirl (Member # 3082) on :
 
Hi Tincup and rest of group:
Just wanted to let you know that I've obtained the Olbas peppermint inhaler and the red/pink sunglasses. I can definitely say they are helping me....still wouldn't say that I want to spend even one extra SECOND in the grocery store (eSPECially the detergent and frozen food aisles...ACK!), but these little devices are making it easier. I haven't been in a mall for about three years....maybe this will be the year?
Anyhoo, many thanks Tincup, for this information, and to eveybody else for sharing their experience(s), so none of us feel alone in this peculiar aspect of our Lyme-ness.
May your holly days be jolly days! LG
(Tincup, I loved this phrase of yours! Just had to try it out, too!)

------------------

 


Posted by RSF718 (Member # 1407) on :
 
Wow, what a relief to know that this isn't all in my head. I have found that shopping malls make me REALLY dizzy and fatigued. I can't stand shopping anymore b/c I get so wiped out and exhausted from it. I just feel completely overwhelmed. Weirdest thing too ... I always loved shopping before. It seems that only the malls overwhelm me like that though. Weird ...
 
Posted by Tincup (Member # 5829) on :
 
Peppermint patty...

Up for new member...
 


Posted by Tincup (Member # 5829) on :
 
Up for new member....
 
Posted by SunRa (Member # 3559) on :
 
Tincup - thanks for bringing this up, being new here, I probably wouldn't have found it otherwise and reading everyone's posts on this has really helped me.

Stores also make all my symptoms worse and I get extremely dizzy. I can only go into them on my "good" days. And I don't even go to the big scary stores...even walking around a small health food store makes me panic, especially when I don't know exactly what I need and I have to look down rows of items.

I'm constantly trying to explain to family/friends that it's not social anxiety! I'm going to print out some of the explanations of the flouresent lights and chemical smells to show them. Thanks!!!!!

I get similar reactions in doctor's offices. I wish they'd get rid of the awful flourescent lighting and create more calming, healing environments.

Tincup - I'm anxious to try the peppermint oil!! thanks for the great suggestions!!

Peace and good health to you all!
- Jen
 


Posted by Tincup (Member # 5829) on :
 
SunRa...

Glad to see it was a help to just read this post.... It does help when we share the stuff that no one mentions.

I am like you.. very difficult for me to "shop" and I know others don't understand. It is embarrassing too... especially when you are invited to go with someone on the spur of the moment and you immediately think to your self.. geeze... I wouldn't invite them to a slaughter house.. so why do they want to torture me? To them shopping is fun. To me I HAVE to do it to be able to eat and survive.... and it compares to looking forward to a root canal.. or worse.

I hope some of the little tricks help ease some of the panicky stuff for you.

Since I have gotten to actually "shop" more lately because of this help... I find that I now sometimes "drop by" a store while out. I haven't even thought of doing that in years... it would have been a nightmare to even consider it. But now I actually feel it is somewhat "normal"...

I still have days that are worse than others.. and sometimes I go in stores and forget to use the peppermint. I get about 10 steps inside before I realize I forgot the peppermint.

And what I said about using it 10 minutes or so before you go in.. that makes a big difference instead of doing it AS you are going in. That couple extra minutes does help.. at least it helps me.

And yes.. doctors offices are a NIGHT MARE for me!

Between already being sick.. nervous.. white coat syndrome.. the smells... being locked up in a tiny room with the door shut... plain stupid white walls bouncing light back in your face.. and the patterns on the floors... etc. etc....

I get dizzy.. weird.. freaky... pacing back and forth like a caged animal... breathing strange.. off balance like I will fall over... dry mouth... anxious...extremely impatient.. and finally nasty and hatefull. The longer I am stuck in the little room, the worse I get.

I am to the point now that I sit outside till the last minute.. reopen the door the nurse shuts when they leave... walk the halls... go use the bathroom... whew... it is awful.

Using the peppermints the whole time helps some.. but that is one of the worst places for me. Especially when they don't have windows! And when they do have windows.. they are often shaded shut. Ahhhhhh!!!!!

Anyhow.. good luck and I hope it helps.
 


Posted by sandygf (Member # 3516) on :
 
Can't tell you how many times I've just left a full cart of 'stuff' in a store cause I
just couldn't last another minute.

I'm probably one of the few people who
doesn't mind parking far from the store
since thats all the more time I have before
I walk inside those dreaded doors.

I feel disoriented, sick, nervous and far
removed from the 'normal' people around me.

Have almost passed out in stores. Never get
all the things on my list cause I just can't
last that long.

Grocery stores are not nearly as bad as
shopping Malls.



 


Posted by lelahj (Member # 3697) on :
 
i get VERY foggy, my eyes tear up, and my nose starts running in places like home depot and wal-mart- i used to think it was my dust allergies. but, come to think of it, i get really irritated by strong odors, bright lights of any kind, screaming kids (grrr), and loud noises.

i've had lyme since 1992 (i think, i was pretty far gone when i tested positive in 1993).
 


Posted by Tincup (Member # 5829) on :
 
Up for new member...

------------------
Never apologise for extreme measures when defending your values, your health, or your family's safety.
 


Posted by livinlyme (Member # 3773) on :
 
look into florescent lighting and the effects it may have on Lymies... not sure but I know it had an affect on my mother when she had it.. and I never stay in stores long enough to find out.. but at work they have them and I'm fine out side but not inside!
Go figure!
Still LIVIN

------------------
Can't do better, unless you know better!
 


Posted by Laurie (Member # 159) on :
 
I'm astonished at the volume of folks who have this problem. No, we can't all be crazy! As Caj said previously, it also seems worse for me in small/mall stores where clothing racks hang free. I often feel the inside of my head "buzzing" or that I don't hear the person speaking to me, and I want to grab onto the clothing rack because it's like the world is sliding out from under me. In large stores like WalMart or Target, I start out okay and within moments, feel overcome with confusion, fright, irritability, as if everything looks "strange." Never had this prior to Lyme. Friends of mine with LD sometimes have to leave when we're in buildings with florescent lights. I've had LD for 19 years and probably babesia also.
 
Posted by Laurie (Member # 159) on :
 
Oh - forgot. You asked how long until we feel "normal" again. Usually, when I get outside to my car I start feeling ok, but the dissasociative state does take a while to dissipate. It does sound like a panic attack, of course, and I also have these - another LD gift. But since so many of us have these store/building intolerance, I think that yes, there's another answer. Maybe the LD has damaged some part of our brain that controls/adapts to something here.
 
Posted by Tincup (Member # 5829) on :
 
up for new members...
 
Posted by Byron2 (Member # 2009) on :
 
Hi...

Most Mall type stores are filled with toxic outgassing chemicals...the flouresant lights definetely have an affect on the body. EVERYONE is affected, but not necessarily notice it...the ballasts that drive the lighting systems is as big as problem as the light itself...it puts out frequencies that bother alot of people...one light not so bad, a hundred or more and well, run for cover...

Byron2
 


Posted by Digby (Member # 3888) on :
 
Yup!~ I always attributed my Walmart symptoms to being chemically sensitive. I avoid the aisle with the scented candles at all costs. I get spacey, weak, my eyes burn, intense brain fog and reach a point where I head for the cashier even if I haven't finished shopping. Just can't take anymore!

The emotional aspect of it for me is a sense of vulnerablility. I will also duck down an aisle to avoid people I know (typically I can't remember their names).

It's not just Walmart of course but being in rural Arkansas, I don't have too many options. Oh yeah, the tire store is the worst, I get physically sick within minutes.

Michael
 


Posted by Lishs mom (Member # 2344) on :
 
Lishkas worst stores are stores with smells. She cant go in the perfume stores or candle stores in general.
The smells used to create seizures, in fact a friend of ours with her "brown baby syndrome" daughter were in a store, and her daughter stopped breathing, just as Lish became white as a ghost and almost fainted. Each mom noticed the others daughter was NOT ok in the store and we rushed out. Her daugher was given O2 and did fine, mine sat for a while and finally recovered. That is the last time we went into a "smell" shop for a long time.

 
Posted by chraxis (Member # 2251) on :
 
I work in a restaurant that is always very hot, partly because the owner is too cheap to put on the AC, and partly because of all of the rotisseries and ovens. When I walk in there my neuro symptoms become worse and I become more fatigued. Also, the perfume section in department stores drives me crazy. Flourescent lights make me notice my neuro symptoms much more, thus making me feel more ill.

[This message has been edited by chraxis (edited 05 June 2003).]
 


Posted by Patty M (Member # 2635) on :
 
I think somebody already mentioned this, but sound and light sensitivity are symptoms of lyme... Even without lyme, the lighting would bother me and depending on the "time of month" the lights might trigger a migraine. Add lyme to it...
 
Posted by Tincup (Member # 5829) on :
 
up for David...
 
Posted by texjb (Member # 5158) on :
 
Since becoming sick in March, 2003 - I have a very difficult time being in large, public places because my brain "does not" process everything I am seeing. My symptoms - disequilibrium, brain ache, brain fog & disorientation - get much worse when in amy store. I would LOVE for this to go away - since I feel like such a loser not being able to "participate" in real life.

Has anyone felt that this has gotten better with abx treatment of lyme?


 


Posted by Beverly (Member # 1271) on :
 
Up.
 
Posted by Green Darkness (Member # 985) on :
 
Throughout my three yrs with lyme I have had a lot of the dizzyness before going into the grocery stores; I'd drive over curbs, almost get hit from the side in my car; a lot of that could have been loud sounds of the traffic beside me--i.e. motor cycles, etc. I used to have to try to get home and sit(scared to death) for three hrs until it passed. Now I get panic attacks ; hate to shop in stores ; have had a lot of photophobia(at one time 20/400 glare).
Now I notice the motion sickness stuff when I drive.
I have just lyme, however, feeling better on the 4000 mg of three different antibiotics(ones used for a lot of co-infections) , so I suspect I have more than lyme.
Thanks for the post,Tincup.
 
Posted by kitsicox (Member # 6307) on :
 
I'm so glad I found this website! Now I know I'm not the only one.

Back in '83, when I was 23 yrs old, I had a weird flu-like illness--headache, fever, nausea/vomiting while in college. It hung on for 3 weeks!! I chalked it up to poor eating habits...but I have never, ever been the same since.

The weird feeling stayed with me after that--when I walked, the ground appeared to ripple under me(like a sidewalk appears on a very hot day). Dizzy, heart palp's, etc.

The warehouse type stores were the worst--my eye muscles felt sluggish, tunnel vision--my eyes would even feel dry-

I once read that autistic people have processing issues because they experience the overload of assimilating their surroundings all at the same time! So every auditory and visual stimulus is processed all at once. Talk about overwhelming. It's no wonder that I often don't even want to be touched--it actually hurts!

My youngest child has autistic behaviors, but doesn't exactly fit any particular part of the spectrum. So he's been taking paxil and it helps a bit.

To fight the icky feeling in stores, like someone here said, you do sort of get used to it. I started wearing a walkman with headphones-sometimes I would have a favorite CD, or radio station on--other times just to buffer myself from the sensory overload. Over the years I have developed hearing loss, so I don't need it much anymore. If your visual problems aren't too bad sometimes sunglasses can help.

Hope this helps.
Take care, Kathy
 


Posted by doggiemom (Member # 6094) on :
 
Haven't been diagnosed with Lyme yet, but I have problems in stores too. I get headaches, dizziness, lightheaded, woozy, and nauseous. One of my doctors, who thinks I have lupus, said it's the flourescent lighting. She said it's bad for anyone with any type of auto-immune problem.

The smells in stores bother me too. I'm allergic to chemicals, perfumes and rubber.

Edited to add: Sometimes I wear contacts. When I go into a store like Walmart, I can hardly stand my contacts. My eyes blur and sting. But away from flourescent lights, I can see fine with them.

[This message has been edited by doggiemom (edited 09 October 2004).]
 


Posted by lymeHerx001 (Member # 6215) on :
 
Yes I have these terrible symptoms,,

so bad today that i cant read well

terrible vertigo and i just went shopping for a new car and all the smell are making my ears weep and the vertigo more intense.

What the hell is going on here!!!!

I want some relief.


IM sick of being a prisoner in my body and with these damn mcs syptoms.


Im gonna keep saying it people.

All thanks to the a- holes at the gym and their PVC mats.

I should sue them!!!!

But all the money in the world wouldnt really help me when I would lose track counting it,, and the smell would bother me

TORTURE!!!! TORTURE!!!!!! SUFFERING

this is this life!!!!
 


Posted by Jackie in NH (Member # 6347) on :
 
I get that all the time. I dread shopping...I get panic attacks in stores like Walmart. My nose is wicked sensitive and my hearing. I can't stand loud noises. It's like having PTSD, I jump from every sudden noise or motion I didn't expect. I feel nuts like I am paranoid! This has been going on for over a year. I was dx only a month ago, but was first dx last November after being bitten by a deer tick in August. My Dr. treated me for 4 weeks with Doxi and that was it. I got worse and then I finally got this dx in Sept. 2004. Long haul. Hopefully I will be able to shop once more!

Jackie in NH

quote:
Originally posted by Tincup:
Anyone who gets feeling bad while in stores shopping.. please give detailed info as to when this happens, types of stores, how you feel exactly (detailed symptoms), how soon after you go in does it happen, what you think triggers it?

Also, once you leave.. how soon till symptoms stop?

Do you have co-infections?

Thanks!



 


Posted by Chocolat (Member # 5138) on :
 
Great inquirey, T.C.

My daughter-in-law and I were talking about this tonight. Just saw the thread.

I get anxiety now just thinking about going into stores.

For me, I know flourescent lighting plays a big part. In doctor's offices I have to always ask if I can close their blinds and usually hold a magazine to shade eyes from the lighting because with sunglasses, can't make eye contact.

Any big store-Target, etc. and my symptoms return within minutes. Disoriented-blurry vision- stumbling-weakness, etc. It is awful.

So now I never shop--unless I can run in real quick and pick up a pair of socks or something.

Terrific info on reasoning behind it-thanks.

Grocery stores are not as bad as department stores so chemical sensitivity must play a hugh part.

But in a crowded store-like Whole Foods today, I get all whacked out. Walk like I am drunk and feel freaked out.

So good to hear of others who experience this. Have always known it was Lyme related. Before with Lupus dx. had the same problems but they are much worse now.

Choc.
 


Posted by Chocolat (Member # 5138) on :
 
Geeeze--just noticed the date on these posts.

Oh well-chiming in anyway.

It has all been very helpful to me since reading tonight.

Choc.
 


Posted by Green Darkness (Member # 985) on :
 
I also get a lot of my symptoms back in stores. Think it is the confusion with loud sounds and flourecent(sp) lights. I usually put my sun glasses on and walk around; helps. Also, get panic attacks and leave the store and others have to drive me home.
 
Posted by TheCrimeOfLyme (Member # 4019) on :
 
AUTONOMIC NERVOUS SYSTEM DSYFUNCTION


 


Posted by kitsicox (Member # 6307) on :
 
Hey, Tincup,Chocolat, et.al,
Gotta tell you something funny about this store syndrome. I was in Target today, feeling weird as usual, and thinking about this thread/responses.

While I quickly shopped, I wondered how many people around me might have the same problem. Somehow, I started to laugh about it, audibly(I was alone). People began to stare, and try as I might, I could not wipe the loopy grin off my face.

The lady next to me in line made eye contact and smiled saying, "What?.....what's funny?"
She started laughing too!

It was hilarious. I don't know why I felt that way today, but it was welcome relief from an otherwise stressful chore for me.

Can't help but think that you guys all made it happen. Thanks!
Kathy
 


Posted by Tincup (Member # 5829) on :
 
up

On the house top reindeer paws?

Or is it... reindeer "pause"?

I gotta know! Tell me.. tell me do.


 


Posted by Corestar (Member # 5980) on :
 
Hey Tincup,

How come I'm just finding this thread tonight, apparently because I'm not sleeping!

You mean there is a possibility I'm not crazy? Wow, what a concept!

I have been going into stores having a lot of this. Sometimes just walking throws me into severe pain. Once I almost sat down in the asile at a large Giant food store. I have always been sensitivie to light so this symptom seemed normal. I can't remember what I am there for unless I write it down.

I think all the stimulation and input is disruptive for me. I'm looking right in front of what I'm looking for and I can't find it. I have 24/7 tinnitus which is made worse from the Zith so that in itself makes me feel crazy.

I can get very irritable around so many people...too much stimulation!

I go shopping like "one of the three pigs"...very early before the rest of the world is up. I never go at crowded times of the day. I have panic attacks. I never had panic attacks before Lyme. I was very even and easy going until I got Lyme.

Something happens with my vision. I don't have all this figured out yet. I had trauma as a young child, have done lots of therapy with a wonderful therapist and have healed so much in my life.

I have Babs and Erlichia and I'm wondering if there is more. My symptoms are worsening with Mepron and Zith and my LLMD says the medicine is taking me deeper into the disease! He is a wonderful human being with a great soul! I am so thankful I found him.

Thanks for posting this question. This has helped me a lot and given me so much more to think about.

I see your name often here, and we're lucky to have you!

Be well and flourish!

Ann
 


Posted by chroniccosmic (Member # 7789) on :
 
I can't believe what I'm reading! I thought I was going crazy! At this point, I don't go into malls, grocery stores or department stores. My husband made the association of the type of lighting (he's a theater lighting guy) that makes me worse. In a store, I would consistently feel worse in a store like Home Depot that have ballast Mercury vapor lighting that vibrates. Apparently, those of us that are compromised neurologically can become quite sick. I feel better in natural light.
Thanks to all of you.
 
Posted by Health (Member # 6034) on :
 
WHO has gotten better from this?

WHO does not react anymore in stores or buildings? I had to quit jobs because of this, the last job was my dream job 5 years ago.


I have this as well, and never did before lyme.

thanks,

Trish
 


Posted by lymie tony z (Member # 5130) on :
 
Used to really get panicky and all that stuff...had to use the little electric carts at one time...would get visually/mentally/geographically confused..not to mention pain if I was walking....

I always hate to say I got better cuz usually when I do the crap pops up again...however I am better and can walk longer until I eventually get pain and sweaty and then don't feel realy well till I'm back in my car heading home...sometimes that was difficult when I was really bad cuz I had trouble finding my car...and then

Had trouble remembering how I got to the store and how to get back....

It does get better though.......zman

------------------

 


Posted by Lymied (Member # 6704) on :
 
Me too!!! In fact my first episode happened in Walmart...I never shop there but was feeling sick while on a trip and thought it was just low blood sugar.

Went in there and almost collapsed. Felt so disoriented and weird.

Office Max is horrible - they have lighting from hell and I actually felt like I was going to have a migraine attack the last time I was there.

Interesting stuff...
 


Posted by lyme_suz on :
 
Forgive me if someone has already mentioned this...

My son has very mild autism (Asperger's); I have noticed that my Lyme symptoms give me the same sensory and attentional problems that her has. This surprised me but makes sense as both autism and lyme cause nuerological problems.

I am not suggesting autism in your case. But interesting observation from my experience as a special ed teacer. Some of my kids freaked out in mall and my impression was that they were overwhelmed by echoes and various noises that typical students systems screened out. Temple Gradin, a woman who is a leader in her field; and Mrs. _____ Holliday give practical suggestions on how to cope with sensory overload.
You have definitly struck a nerve with your post,,,Hope the response is more encouraging more than overwhelming!

Best wishes,

Suz
 


Posted by Lauralyme (Member # 15021) on :
 
I do the same also. I just started teaching at a new school and my room has flor. lights. They are driving me crazy! I tested positive for Irlen Syndrome. This has to do with the way your eyes perceive lights. A lot of my special ed. students have this! So, I am wondering if the neuro. stuff is the culprit?
I also have a huge problems at church. No, flor. light though. Perhaps, it is having to sit still for so long?
Great topic!
 
Posted by tailz (Member # 10014) on :
 
I look like a truck hit me whenever I go into a brightly lit store, especially in winter months. Maybe it's the dry air.

My eyes swell up, turn red, get all bloodshot, tear profusely - it looks like I have pink eye. Sometimes green or yellow 'goo' starts to accumulate in my eyes, even though they are dry, itchy, and painful.

I get all congested and my nose starts running like crazy. I also find myself crinkling up my forehead and wanting to rip my contact lenses out. I often have trouble breathing when this happens. I know I must look like a freak of nature when this happens.

I don't think my symptoms are just a straightforward case of photophobia in stores anymore like I originally thought. If this were the case, I would think I'd be just as bad leaving the store and going into daylight, but often I feel better when I leave the store. Hall's Menthol Lyptus sometimes helps, too.

I think it's the fluorescent lighting - the more fluorescent lights a store has, the worse I feel. I think mold and chemical sensitivities is another trigger.

I went to Goodwill yesterday - I'm fine in one of them, but this particular Goodwill store has more fluorescent lighting than the other AND smells like moldy fabric softener, dryer sheets, and mothballs.

My pupils get even tinier, too.
 
Posted by CaliforniaLyme (Member # 7136) on :
 
This is yet another thing that IV Rocephin took away!!! It is gone now, has been for years. It made me feel CRAZY because it was so severe and sudden, for me would just start feeling massive vertigo & nausea...

I think it is the fluorescent lights because when it started happening it would happen in Safeway our grocery store. I would just start to feel almost like a physical meltdown. It was horrible, I would have to leave and go home and vomit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank God that is gone!&)*!)*)!
God & my LLMD*)!
 
Posted by ChrisBtheLymie (Member # 8916) on :
 
I started to feel very dizzy and my brain feels foggy, this causes me to be tense and anxious, then I start to really panic, sometimes breathing changes and I just need to get out A.S.A.P. [Frown]
 
Posted by sickandtiredofbeingsandt (Member # 10189) on :
 
Very interesting thread. I can't read it all through, though. There's too much. However, I have this same thing and have had it for years.

I worked for a construction contractor for about 10 years before I had to retire. I knew the florescent lights were bad for me so I asked them to install special ones.

They were a kind that don't flicker or pulse at the speed the usual ones do. I could work under them. They were expensive, though.

Can't expect stores to shell out $$ for special lighting for what they would consider a small percentage of their customers. Too bad for us.
 
Posted by Health (Member # 6034) on :
 
I have this problem too, it started about 10 years ago, have had undiagnosed lyme about 17 years or more.

I had a mercury filling out the time I became extremely MCS sensitive. I became so sensitive within one month that I had to quit my job, leave the city and moved in with family.

I still to this day think I became sensitive because of the mercury filling, but maybe not, I had all mercury out and did 2-3 years of chelation with ND's the DMPS shots, the oral chelation, had root canal out, did improve enough to work again, somewhat

but then became sick again, and could not work, then found out I had lyme.

I find stress makes it worse, I read on here somewhere that IV Rocephin helped someone with the MCS, it went away completley he/she wrote,

So there is hope.

Trish
 
Posted by Moosie (Member # 10033) on :
 
Really interesting.

I have big time troulbe in Walmart. There was a super Walmart in Topeka, KS, that was at first called Hypermart. I called it Hyperhell.

Also, the flourescent lighting thing. When I was still working, I had my own little private office. It had overhead flourescents that had orignially been lighting a much larger area. I couldn't stand them.

I took out the tubes because it was the only way to have them off and brought in floor torch type lamps, and used under-cabinet lighting and those little green desk lamps for my work surfaces. My office looked like a den. It was really pretty nice actually. Others in the office would come at break times to sit in my den. . .

But while it was nice, it was because the overheads drove me insane. They flickered, at least to me, and I could hear them too.

I wondered about the connection.

Moosie
 
Posted by pigwit (Member # 9059) on :
 
I think the neuro problems from some of the large buildings is more from pollution in the air than from the lighting.

I have worked in a large distribution center with over 25 miles of conveyors. Cardboard boxes go to a machine that crunches them up into bales.

When I worked near the machine, I tended to have spells of severe brain fog, blurry vision, and sometimes becoming dizzy.

It was more dusty the closer I got to the machine. I suspected that dust came from the boxes and glue used to hold them together. The process of crunching them up probably caused more dust, fumes, etc. to be released.

Having a lot of product stored in cardboard boxes may be a factor also. If so, it may be worse in large stores like a supercenter or Sam's Club.
 
Posted by panicbegone (Member # 10760) on :
 
wow im not alone.
i get like this mildly in my own house. but mostly when i out which is rare.
i get hot...slightly disoriented and blurry/foggy, its different from a panic attack..which i get too.
I get tired, irritable, lose my train of thought and cant "browse" like i want. I feel i can only stand it for a short time.

I tried going to the mall...horrible! Light headed, felt faint, couldnt walk right.
Local stores are better. I do better in safeway than in walmart. But ...when i go to a place like that i ALWAYS hit up the food section first and either get a water or juice and sometimes a snack...just so i know that if i feel weird its not from my hypoglycemia.

hope that helps.
now u know why im always sitting at home on my a$$. Cant handle the outside too much...as much as i miss it.
I too have motion sickness...so i can relate to the previous poster
 
Posted by GRC (Member # 10452) on :
 
The lights,tile floors make me dizzy (er),light headed and cause panic attacks.
Gets better as soon as I get out of there.I hate to leave home anyway..... [loco]
 
Posted by Robin123 (Member # 9197) on :
 
Wow - what a thread -- for me, it's the chemicals. I call it sidewalk shopping. I literally sometimes have had to ask the store clerk to bring the wanted item outside for me if the store is one of those petrochemical type ones!

Also, bleach cleaning. Can't be in a place at closing time when they start cleaning it. One office I go to all the time has agreed to switch to lesser-smelling cleaning fluids, and I think everyone who works there is happier with that switch too.
 
Posted by pigwit (Member # 9059) on :
 
When I have the symptoms I described above, my head is sweating for most of the shift. The rest of my body does not feel hot. When the symptoms came on quickly or unexpected, I felt close to having a panic attack.

There is also a lot of background noise which adds to overstimulation.

Maybe the large buildings have toxins, light waves that affect us neurologically, overstimulation, and present the need to make many small decisions that can overwhelm and/or confuse us. That can easily trigger fear or panic.
 
Posted by Monitorp (Member # 11011) on :
 
Interesting that many of you are affected at Walmart because somebody just posted at my board that he's employed at Walmart & it's tough going for him.

It definitely is a neurological issue which can be affected by lyme, mercury, childhood trauma, chemicals, & more.

Alot is explained in Invisible Disease (by Gunni Nordstrom). Per Hedemalm, consultant, explains that EMFs/light/chemicals are interchangeable insofar as effect. Also that CHEMICALS ARE PHOTO-REACTIVE. For example, some medicines warn against exposure to sunlight. Thus,
here's the process:
Induction of chemicals (absorbtion of chems into body
Then comes chemical & photo-reactivity by body, and all sorts of sensitivities, spasms etc.

What Nordstrom omits in her book is that there's also emotional toxins caused by trauma which keep playing like a broken record and require clearing (similar to REBOOTing one's computer.

Neurolink maybe worthy of trial for some of you. Then again, there's good practitioners & inferior ones as I've discovered by experiencing 2 neuro (NMT & neurolink respectively). Life is about russian roulette & guinea pigs. [Wink]
 
Posted by AutumnDay (Member # 9532) on :
 
Hi Tincup,

Put me down for this one to. Stores, crowded anything with a lot of movement, also big picture movie theaters.

This has been one of my worst symptoms. Dizziness, almost 24/7. It's good to know that I am not alone. Thought I was the only one this happened to.
 
Posted by Geneal (Member # 10375) on :
 
Other than my joint pain, my first realization that something was really, really wrong with me was at Walmart.

As I was pushing my basket I started feeling shaky like my blood sugar had taken a serious nose dive.

I became short of breath, weak, and full of anxiety.

I almost passed out at the check out. Horrible!!

Walmart still sets me off. I have dizziness, shaking and air hunger.

Also get unusually annoyed while shopping there. I seem to be in such a hurry to get out of there that any delay like a long line, someone's cart in my way really irritates me.

Don't have many shopping options around where I live. So I grit my teeth and go to Walmart.

I always survive the trip......just barely.

Geneal
 
Posted by Al (Member # 9420) on :
 
Add me to the list ! I can't even take 10 steps in the box stores without getting dizzy,vision blurry,almost fainting. I have to leave immediatly. I also get this while watching TV and on the computer. I started 3 years ago with dizziness and collapsing. I remain dizzy with pre syncope.
I.ve been to every specialist with many tests.
So far I have a pos. Tilt table test and an abnormal brain stem response. No one can explain
this condition.
 
Posted by D Bergy (Member # 9984) on :
 
For those of us who have used Rife Therapy the sensitivity to flourescent lights is not too uncommon.

There are some people who are sensitive to using Rife machines when they have Lyme. Flourescent lights give off frequencies as well which cause similar symptoms. An MRI can be uncomfortable and even bring a Herx on.

The other heightened senses are also common. My wife has Lyme and I swear she can smell a dirty sock in the neighbors house. Maybe I am exaggerating a bit but it is amazing.

As the person reduces his bacterial load these symptoms usually go away as well. So the good news is it is probably not permanent and you are not crazy. Sensitivity is also a good way to monitor progress, at least that is the common thinking.

Lyme certainly irritates the nervous system so I guess it makes sense having these sensitivities.

Best Regards

D Bergy
 
Posted by jwf (Member # 6292) on :
 
I have been sensitive to electromagnetic
fields for over 20 years due to working near
electrical equipment with high magnetic fields
(EMF sensitivity).

Lyme disease does seem to make this problem
worse.

With fluorescent lighting the electromagnetic
ballasts can be replaced with the newer solid
state ballasts. When this is done and full-
spectrum fluorescents are used the effect is
amazing. You actually feel relaxed and wel-
come when entering a store.

Fluorescent Lighting - Ballasts: Why You Should Upgrade
Ballasts are an essential component of any fluorescent lighting system, providing a controlled current to the fluorescent tubes. In an office or industrial setting, the standard type of ballast used for the last few decades is an electro-magnetic type, which unfortunately produces a number of negative side-effects:

They operate at 60Hz, or cycles per second - the frequency of the AC voltage they run on. This means that each lamp switches on and off 120 times per second, resulting in a barely perceptible flicker and a noticeable hum (sounding like a buzzing low `A' note on a piano). About 25% of the population is sensitive to ballast flicker and hum and actually can become physically ill, with symptoms such as headaches, nausea, itching and burning eyes, tension, eye fatigue, and general fatigue.

In recent years, a new solid-state electronic ballast has become available to the American market. This ballast is lightweight, generates very little heat, and operates at about 25,000Hz, rather than the standard 60Hz. This last detail, high frequency operation, effectively eliminates all flicker and hum, removing any associated health concerns.

http://www.scif.com/safety/losscontrol/Article.asp?ArticleID=320

Blue Skies........John
 
Posted by D Bergy (Member # 9984) on :
 
Thanks for the info John, I was not aware that the other ballasts were available.

Some other sources of stray frequencies are dimmer switches, cell phones, radio towers, cell towers, wireless internet and cordless phones.
Most of these are high frequencies which usually do not cause problems. But who knows in the case of Lyme Disease?

60Hz also is the same frequency your bodies electrical system used. Kind of scary since this controls your heart.

D Bergy
 
Posted by TheCrimeOfLyme (Member # 4019) on :
 
Its been four years for me, and I still can't do walmart, but I can do pretty much everywhere else except the dollar store- which just stinks to high heaven.
 
Posted by Tincup (Member # 5829) on :
 
Up for those with problems dealing with being outside the home.

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
Bringing this up...

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
Up for more responses and to gather any tips you can suggest to help others deal with this situation.

I have also put some articles on this site below to help people who may be having problems.

https://sites.google.com/site/marylandlyme/symptoms-information/fluorscent-lights--eye-brain
 
Posted by lookup (Member # 44574) on :
 
I ordered the lab coat at www.lessemf.com as it blocks 97% of the EMF. Also ordered the Brain Cap for sleep (really not cute at all!) because they just put in a new cell phone tower across the street! Now, we have to move.

I bought the apron because it blocks computer and cell phone radiation. They have various clothing for day wear that is protective.

Unplug the router at night. Turn blue tooth off in the car and put phones on airplane mode while driving. I have an Accoustimeter and wow! One can really cook themselves in a car.

I tested the apron- it is really good. It won't stop 5G from coming through but it's better than nothing.
 


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