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

Do you have co-infections?

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.

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.

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.

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.

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!!

so much fun.

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 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.

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!!!

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.

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.

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

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...

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.

You can put dandelions in your salad too! yummy!

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)!!!!!!

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.

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

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.

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

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.