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.

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:

---

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

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!