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).]

quote:

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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

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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

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

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

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!

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

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

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!!

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!!!!!

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.

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...

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.

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

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.

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.

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

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!

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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.

Oh well-chiming in anyway.

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

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.

On the house top reindeer paws?

Or is it... reindeer "pause"?

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

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!

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,

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

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.

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,