Re: strange odors

[Guest guest]

, I wish I could tell you I know what you mean about the nose thing, but

my sinus condition has become so chronic that I really can't smell much of

anything anymore.

[Guest guest]

In a message dated 12/2/99 4:12:36 PM EDT, mlmccoy@... writes:

<< Just got my latest MRI results back, it shows two more lesions, that makes

three, and acute sinusitis....haven't talked to my doctor yet....wonder how

may lesions and how much more brain damage I need to qualify for IV

treatment???

Thoroughly disgusted,

Marta NJ >>

I'm so sorry to hear abt your " new " lesions Marta. I know it must have felt

horrible to get the news. Good Luck getting IV. Its not gonna be easy, But I

am still convinced that Miracles do happen. I really do hope that it happens

sooner than later for you so you can get the IV that you so desperately need.

My Prayers are with you Sweetie.

Also disgusted with this whole situation,

[Guest guest]

In a message dated 12/2/99 3:49:28 PM EDT, Namkrats3@... writes:

<< I often smell things that no one else in the room smells...

Joan LI NY

>>

Thats funny Joan , I thought it was just me : ) Thanks for sharing that .

Di

[Guest guest]

& Other Members,

I didn't have just one odor, but what I called

an " acute " sense of smell, super hypersensitive

to smell, light, and noise. When my tonsils and

adenoids were finally removed at age 37, I lost

my sense of taste to just minimal taste for almost

2 years and even now have times when I can't

eat because it just tastes like straw to me.

I would tell family members to please not wear

perfume, colgne, that kind of stuff when coming

over especially the musks and my BIL wore the

musk deodorant and didn't think I could smell

it because he couldn't! Duh!

They never did take me seriously. Hmm....maybe

that's why I don't see anyone but my hubby and

dogs anymore. Give me the doggies anyday over

the perfumes and stuff, ugh! -

[Guest guest]

Yes , the cranial nerves affect your sense of smell and taste.

I often smell things that no one else in the room smells...

Joan LI NY

[Guest guest]

Yes, , I have experienced strange odors on occasion that no one else is

aware of. Just got my latest MRI results back, it shows two more lesions, that

makes three, and acute sinusitis....haven't talked to my doctor yet....wonder

how may lesions and how much more brain damage I need to qualify for IV

treatment???

Thoroughly disgusted,

Marta NJ

[ ] strange odors

Hi...

I was wondering if any body else ever experiences strange odors in the

nose??? I can not even explain what the odor is like. I seem to get it once a

month when I cycle...It is a very sickening smell....I have heard that lyme can

affect the 6 cr. nerve...I think that is the nerve that has something to do with

smell and taste?? , N.Y.

[Guest guest]

Yes!!!! I felt like a f**king maniac going around the house sniffing, trying to

figure out where that strange odor was coming from that nobody else smelled. I

was spraying Lysol, burning incense, doing aromatherapy, to no avail. It

actually seemed to get worse when I started abx's but in the past few weeks it's

gotten better along with every thing else. It seemed like sometimes I was just

oversensitive and sometimes I was having smell hallucinations. (I suppose

there's some technical word for this.) It' s still bothersome just around when I

go to sleep. I have to have a certain kind of lotion on my hands that blends

with the stinky odor but isn't too strong.

Sheesh. I kept meaning to ask everyone about this. I figured it was just one

more weird Lyme thing.Glad someone mentioned it for the record.

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive or

equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 13 wks IV Rocephin, Rocephin oingoing w/ Flagyl 1000 mg.

Live in San Francisco

[Guest guest]

Technically - they are olfactory hallucinations. =)

sometimes I was having smell hallucinations. (I suppose there's some

technical word for this.) It' s still bothersome just around when I go to sleep.

I have to have a certain kind of lotion on my hands that blends with the stinky

odor but isn't too strong.

[Guest guest]

Ya'll mant to hear something really nutty!?! I raise chickens and I can smell

when one is catching cold when I go into the coop, it only has a covered top and

1 side so its not totally enclosed, I can also smell a cold coming up in my

dogs, hubby and horses. If I get a snake in the yard I can also smell it long

before we find it, and I can smell if I have an egg starting to go bad (through

the shell) hubby cant smell any of this, and calls me his 2-legged blood hound!

and forget about being around smoke, I cant stay with my Mom because of this.

And I just thought I was nuts! glad to see others are also!

Technically - they are olfactory hallucinations. =)

sometimes I was having smell hallucinations. (I suppose there's some

technical word for this.) It' s still bothersome just around when I go to sleep.

I have to have a certain kind of lotion on my hands that blends with the stinky

odor but isn't too strong.

[Guest guest]

weird huh......for a disease that some says does not exist....we all have

very similar symptoms........amazing when someone on the list brings one to

the surface we suddenly relize it is lyme related.....we either really suffer

from tyhe same disease or we are hypochondriacs with esp.......

can't wait till weds. i am so physched.......getting my sweatshirt ready

.......hopefully will be warm enuff so that is all i need......got my train

sked figured out.......bought 4 yds of lyme green 1 inch wide cloth to make

ribbons with ......packing my backpack and portable chair.......this is going

to be great .......one letter to the editor was printed today......hopefullly

sunday on the other ....also forwarded ritas press release to the

media........the green panthers strike on the 8 th.......

Reid

[Guest guest]

In a message dated 12/3/99 10:40:14 AM Eastern Standard Time,

RMcmur3194@... writes:

<< .one letter to the editor was printed today......hopefullly

sunday on the other ... >>

which paper was today Reid?? Wanted to look for it...Bernadette

[Guest guest]

morris county daily record.....will bring the copy to the rally if i can

remember....Reid

[Guest guest]

Marta,

You have never had I.V. treatment? How long have you been sick with lyme?

Will you insurance pay for the I.V. treatment? You probably have done all the

appeals???

[Lyme-aid] strange odors

Hi...

I was wondering if any body else ever experiences strange odors in

the nose??? I can not even explain what the odor is like. I seem to get it

once a month when I cycle...It is a very sickening smell....I have heard that

lyme can affect the 6 cr. nerve...I think that is the nerve that has something

to do with smell and taste?? , N.Y.

[Guest guest]

beth,

I just returned from Pa. from my lyme doc....I logged on to check messages

and I have to tell you that your's brought a huge smile to my face....You are so

funny....You might not have meant to be funny but it struck my funy bone......I

can not stand the smell of perfumes and I can no longer eat meat or eggs.I don't

know why but even the thought of them makes me gag! ...

Re: [Lyme-aid] strange odors

Yes!!!! I felt like a f**king maniac going around the house sniffing, trying

to figure out where that strange odor was coming from that nobody else smelled.

I was spraying Lysol, burning incense, doing aromatherapy, to no avail. It

actually seemed to get worse when I started abx's but in the past few weeks it's

gotten better along with every thing else. It seemed like sometimes I was just

oversensitive and sometimes I was having smell hallucinations. (I suppose

there's some technical word for this.) It' s still bothersome just around when I

go to sleep. I have to have a certain kind of lotion on my hands that blends

with the stinky odor but isn't too strong.

Sheesh. I kept meaning to ask everyone about this. I figured it was just one

more weird Lyme thing.Glad someone mentioned it for the record.

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 13 wks IV Rocephin, Rocephin oingoing w/ Flagyl 1000

mg.

Live in San Francisco

[Guest guest]

Kiana...I know...doesn't it just drive you nuts???linda

Re: [Lyme-aid] strange odors

>From: " bornfree " <bornfree@...>

>

>Yes, I have this hypersensitive sense of smell too. My other senses are

>also very sensitive, esp touch. Sometimes I jump when my husband touches

me

>and I don't even notice. This happened the other night.

>

>I frequently tell my husband I smell something and he tells me there is

>nothing cooking or burning or ?

>

>Kiana

>

>-----Original Message-----

>

>>From: <swsftwtx@...>

>>

>> & Other Members,

>>

>>I didn't have just one odor, but what I called

>>an " acute " sense of smell, super hypersensitive

>>to smell, light, and noise. When my tonsils and

>>adenoids were finally removed at age 37, I lost

>>my sense of taste to just minimal taste for almost

>>2 years and even now have times when I can't

>>eat because it just tastes like straw to me.

> -

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

[Guest guest]

Hi ,

I did 6 weeks of IV back in January 1998, when the first lesion popped up, I

had Aetna US Healthcare, and was told that was all they would approve, I was

real naive back then. I did well on that IV therapy for two whole weeks, and

felt like my old normal self, then relapsed again, and have been struggling by

on orals since then.

Dec 1998, Brain Mri showed just the one lesion again, November 1999, I hit the

tri-fecta. I am waiting for my doctor to call me back since Friday. When my

husband and I saw him in October, he suggested I stop abx for a month or so to

see if I would sero-convert to positive....I did this once before, it didn't

work, but I agreed to do it again. He also suggested the brain MRI again, and

that panned out. I had blood drawn on December 1st, so results will take

awhile. We are changing our insurance to Prudential HMO (owned by Aetna!) on

January 2nd, I don't know how this will effect my request to resume IV....I want

long term too, none of this 6 week and stop crap....I am mad now, I hate having

brain damage, and I could have told them I was having problems without the

expense of the damn MRI....sorry to vent. Oh, I found the tick in my scalp on

August 3, 1996, I was sick before I even found the tick in my head, due to HME.

I had bullseye rash too, so I was coinfected, no decent treatment till January

1997.

Hugs,

Marta NJ

-----Original Message-----

From: Girard <ranlin@...>

Marta,

You have never had I.V. treatment? How long have you been sick with

lyme? Will you insurance pay for the I.V. treatment? You probably have done

all the appeals???

[Guest guest]

In a message dated 12/5/99 4:52:42 AM Eastern Standard Time,

mlmccoy@... writes:

<< and was told that was all they would approve, >>

who told u that Marta.? the company or the doctor?..i got 12 weeks that same

spring from ushc..so did hubby...and we were told we would get it as long as

te dr said it was medically necessary....b

[Guest guest]

In a message dated 12/5/99 11:31:46 AM Eastern Standard Time, BratDet@...

writes:

<< who told u that Marta.? the company or the doctor?..i got 12 weeks that

same

spring from ushc..so did hubby...and we were told we would get it as long as

te dr said it was medically necessary....b >>

Hi B

Doesn't the Doctor need to prove to USHC that you need continued IV; how did

the IV help you and how did your MD decide that was enough?

thank you

best,

lea CT

[Guest guest]

Marta,

Boy, I sure can relate to the I.V. thing. I was fortunate to get 6 months

before they stopped it. I was ill 3 years before I received any treatment. That

was the real clincher...The babesiosis reallly took hold. Thought I was going

to die...They did an MRI and a brain spec...no lesions thank God..Ihave a lot

of neurological problems though....Anyway, I will pray that you get the I.V.

back....We spoke to a lawyer who fights for lyme people and he told me he could

help me get the I.V. back.....We would have to go through all of appeals and

stuff like before. He said when we get all of the denials again, we could go

to court and fight for my meds...I am holding off for now because I have such a

problem with burning urination. The stronger the antibiotics the worse the

burning is. This in itself is very draining. I have burned like this for 5

years...Wears one out.....

You have every right to vent Marta. The brain damage you show is all

unecessary. I would be irate if I were you...Extra prayers for you......Hugs

Re: [Lyme-aid] strange odors

Hi ,

I did 6 weeks of IV back in January 1998, when the first lesion popped

up, I had Aetna US Healthcare, and was told that was all they would approve, I

was real naive back then. I did well on that IV therapy for two whole weeks,

and felt like my old normal self, then relapsed again, and have been struggling

by on orals since then.

Dec 1998, Brain Mri showed just the one lesion again, November 1999, I hit

the tri-fecta. I am waiting for my doctor to call me back since Friday. When

my husband and I saw him in October, he suggested I stop abx for a month or so

to see if I would sero-convert to positive....I did this once before, it didn't

work, but I agreed to do it again. He also suggested the brain MRI again, and

that panned out. I had blood drawn on December 1st, so results will take

awhile. We are changing our insurance to Prudential HMO (owned by Aetna!) on

January 2nd, I don't know how this will effect my request to resume IV....I want

long term too, none of this 6 week and stop crap....I am mad now, I hate having

brain damage, and I could have told them I was having problems without the

expense of the damn MRI....sorry to vent. Oh, I found the tick in my scalp on

August 3, 1996, I was sick before I even found the tick in my head, due to HME.

I had bullseye rash too, so I was coinfected, no decent treatment till January

1997.

Hugs,

Marta NJ

-----Original Message-----

From: Girard <ranlin@...>

Marta,

You have never had I.V. treatment? How long have you been sick with

lyme? Will you insurance pay for the I.V. treatment? You probably have done

all the appeals???

[Guest guest]

B

My doctor is ultra conservative.....trust me, he panders to insurance

companies.....I will insist on IV till I feel better, and then some, and

appeal if insurance tries to get me to stop, I need my brain.

M

-

>From: BratDet@...

>>

>who told u that Marta.? the company or the doctor?..i got 12 weeks that

same

>spring from ushc..so did hubby...and we were told we would get it as long

as

>te dr said it was medically necessary....b

[Guest guest]

& , and all the others with smelling problems.

DITTO for me! I have bought so many different candles and incense and nothing

works. Its funny, I smell all sorts of weird odors that nobody else does, but I

can't smell the aroma of the candles unless I burn several at one time, isn't

this weird? I get dizzy and nauseous if I'm around anyone with perfume on. I

hate going to the grocery store because of this. And if I'm in the soap and

detergent isle, I have to hold my breath and grab what I need very fast, for

fear I'll pass out. This is so weird! Just another one of the many symptoms of

Lyme I guess. Now if only my brain could be as acute as this smelling problem.

Vicki, Md

[Guest guest]

Vicki,

I can not stand the smell of perfume or walk down the meat aisle in thd

grocery store.....I could throw-up! Red meat makes me cringe...

Re: [Lyme-aid] strange odors

& , and all the others with smelling problems.

DITTO for me! I have bought so many different candles and incense and

nothing works. Its funny, I smell all sorts of weird odors that nobody else

does, but I can't smell the aroma of the candles unless I burn several at one

time, isn't this weird? I get dizzy and nauseous if I'm around anyone with

perfume on. I hate going to the grocery store because of this. And if I'm in the

soap and detergent isle, I have to hold my breath and grab what I need very

fast, for fear I'll pass out. This is so weird! Just another one of the many

symptoms of Lyme I guess. Now if only my brain could be as acute as this

smelling problem.

Vicki, Md

[Guest guest]

In a message dated 99-12-07 16:39:27 EST, you write:

<< Red meat makes me cringe... >>

Dear ,

I've felt this way for years - it's gross! Probably a good indication not to

eat red meat.

Mad Cow (which, incidentally DOES exist in US) is quite prevalent & a REAL

issue! (Perpetuated by none other than our " friends " in the govt. who are

supporting " feeding " animal remains to cows - Europe banned this practice,

but our govt. supports it!) Have sites / emails on this issue (with

permission to share) if anyone is interested.

Blessings,

Chris

[Guest guest]

I'd like those sites - this is another serious problem. I came to the

US from the UK in '91 and know what devastation that problem can cause. In

fact that's one of the things I thought I may have when I first contracted

Lymes. The doctors laughed of course. Mad Cow is becoming an issue here.

I'll go all out to stop this disgusting practice - in this day an age of

plenty there's no way even the animals should be eating each other. It's

barbaric and very dangerous. Thanks for bringing it to our attention..

Vicki S, NJ

Re: [ ] strange odors

>From: DobeLovr1@...

>

>In a message dated 99-12-07 16:39:27 EST, you write:

>

><< Red meat makes me cringe... >>

>

>Dear ,

>

>I've felt this way for years - it's gross! Probably a good indication not

to

>eat red meat.

>

>Mad Cow (which, incidentally DOES exist in US) is quite prevalent & a REAL

>issue! (Perpetuated by none other than our " friends " in the govt. who are

>supporting " feeding " animal remains to cows - Europe banned this practice,

>but our govt. supports it!) Have sites / emails on this issue (with

>permission to share) if anyone is interested.

>

>Blessings,

>

>Chris

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

[Guest guest]

Thanks ,

So many of us having so many problems with scents. The red meat hasn't got me

yet, thank goodness! But I feel like a super human in other ways - smelling

things no one else can! Vicki, Md

Vicki,

I can not stand the smell of perfume or walk down the meat aisle in thd

grocery store.....I could throw-up! Red meat makes me cringe...