hope in 1999

[Guest guest]

Hi guys, just want to wish you all a much happier and healthier year. If we

all pray hard enough and keep positive energy focused on a cure, we will

succeed.

I also wanted to ask if any of you suffer from ocd (obsessive compulsive

disorder) I have it pretty bad and was wondering if it could be related to

Lyme.

Keep up all the great posts. Feel better everyone.

-Val

[Guest guest]

Dear Val,

Yes, I think OCD is related to Lyme. I can't remember where I read it, maybe

it was in Dr. Fallon's report. I will try and find it for you. I do know I

have read it more than once. I have been to several conferences and it was

mentioned each time.

HAPPY HEALTHY NEW YEAR EVERYONE

Hugs,

Connie

[Guest guest]

HAPPY NEW YEAR to you too, Val, and to the rest of you as well!!! Hopefully,

this will be a better year for us all!

I am not sure how symptomatic the OCD you are suffering from is, but I know

that I have become extremely anxious and hung up on things that never used to

bother me in the least. When my shrink was filling out the papers for SSDI, he

stated that I now suffer from dementia and personality disorder syndrome (no

offense, he added)

I am not so offended as I am disturbed by this. I know for SURE that in my

pre-Lyme days these were not words that would ever be used to describe ME. But,

Lyme has a HUGE mental component and I am sure that if you ever had the

slightest tendancy towards OCD type behavior, that the Lyme is totally capable

of enhancing it. Try not to let it get to you!

Hugs,

Alison

ValP74@... wrote:

> From: ValP74@...

>

> Hi guys, just want to wish you all a much happier and healthier year. If we

> all pray hard enough and keep positive energy focused on a cure, we will

> succeed.

>

> I also wanted to ask if any of you suffer from ocd (obsessive compulsive

> disorder) I have it pretty bad and was wondering if it could be related to

> Lyme.

>

> Keep up all the great posts. Feel better everyone.

> -Val

>

> ------------------------------------------------------------------------

>

[Guest guest]

Thanks . I do think the OCD was brought on by the Lyme. It is just so

weird how this disease works. I have been on meds now since July and am stil

not well. I think I am better than before but not anywhere near myself. In the

past I would go on meds and be close to fine within a month or so's time. This

relapse is completely different. I have never been so afraid of it as I am

now. I guess because I always just became well on the meds and thought it was

a managable illness. (HA HA HA) By the way what meds are you taking now? Write

me when you can. I am so thankful for all of you gutys. Feel better -Val

[Guest guest]

Hi Connie just writing to say thanks for the reply and hope you are feeling

better. -Val

[Guest guest]

Hi Val, yes I have been dx with that disorder also, amazingly enough at the

start of my symptoms. It will be interesting to see if it is another vicious

part of lyme disease. Take care and here's looking to a new year full of

hopes and dreams of healthy living.

Hugs

Amy

[Guest guest]

Alison, your attitude is truly remarkable, especially with all the meds your

on. Hope you have a terrific 99.....you deserve it. Sounds like you also

have a smart doc, can you let me know where your from, maybe he is closer to

me than my doc I am using now, who is 10 hrs one way by car. (I'm from Maine

and he's in NY)

Hugs

Amy

[Guest guest]

Don't be scared, Val...I am sure that what is happening is that the

bacteria is just becoming more resistant to the meds, but eventually you

will be able to overcome even the most stubborn of the buggers!

Currently I am on (don't laugh) IV Doxy, oral Raxar and Zithromax,

Famvir and injectible Bicillin. I have really had my doubts over the

past few weeks too but the most important thing (says my doc) is to stay

positive, so my new yar's resolution is...to stay positive! The good

news is I'm covered for just about anything else I might normally

get!<G>

I find the mental component the hardest to deal with and the hardest to

shake. But at least I know its not me!

Hugs,

Alison

--

[Guest guest]

I had to laugh. You travel from Maine to NY and I travel from NY to

central NJ! But my doctor and her whole family have Lyme and she is very

aggressive. She won't let me quit and trust me, there are times I really

want to! I have so many problems stemming from this disease (not

physical) that every minute of my life is a fight and I am just not a

fighter. I spent the whole night crying and feeling sorry for myself-but

I would feel like such a traitor to my doctor if I just gave up. I

happen to really love her. She is a real person, not just a doctor...a

real humanitarian and if she refuses to give up on me, I don't dare give

up on myself! Anyway, now we all have each other!!!! So we have to hang

in there for the sake of all of us!

Hugs,

Alison

--

[Guest guest]

since being dx'ed with lyme, besides all of my nuero and physical problems i

have been dx'ed with a " bipolar disorder " however my biggest problem has

cropped up in the last few weeks and i have to talk to my shrink about it on

Friday... i am now very fearful of leaving my house even for short

times.....don't know if it is due to depression or just that the only place i

am comfortable is at home if i am tired i can sleep and i have been in

enormous pain lately......that could also have something to do with it....also

since coming down with lyme 9 years ago i can no longer handle weather changes

or extreme hot or cold and here in jersey it has been bitter cold to me. Is

anyone else going thru this " recluse stage " or am I really off to the funny

farm?

Reid

[Guest guest]

ALLISON, WOW SHE SOUNDS GREAT, keep on trudging. I believe with a doc like

that you can only get better, it just may take some time

Hugs

Amy

[Guest guest]

Hi Rid,

Don't worry it's not time for the funny farm -- I went thru the same thing.

I've gotten over that, but I'm still terribly claustrophobic, something that

NEVER bothered me before this past year. I found out several of my

psychological problems were related to the foods I was eating and a never

ending yeast infection. I've done elimination diets to figure out what

bothers me, you might want to try this. I found the worst culprit to be

mushrooms (the organic kind, not the " funny " mushrooms!) Before the diet I

felt the same way, when I was out all I wanted to do was go home. But after

the diet that went away. One night I splurged and had mushrooms at dinner. I

could barely handle going to the store with my husband driving, and I didn't

even go into the store. Try staying away from fungi and yeast, hopefully this

will help.

Take care,

[Guest guest]

Hi Reid,

Just wanted to apologize for the misspelling of your name -- Lyme brain at

work. Sorry,

[Guest guest]

Dear Reid: It could be depression, or it just could be that the reality

of your life [as with the rest of us] is just depressing! Is it really

wrong to want to be able to control something, even if it is just your

surroundings and the ability to nap if you want to? On my " good " days,

I try to keep a routine of sorts so I don't become too sluggish. Like,

get up at a certain time, and shower, and make myself breakfast, feed

the bird, and log onto the Internet to see what's going on with you

folks. Maybe if you have a routine it will help to give you the impetus

to want to interact with people.

But personally, in the winter everyone here has colds/flu - who

needs the interaction??

Lovette

[Guest guest]

Poor Reid,

I do hope that you are not suffering from a new disorder...darned if I

can recall the name of the one where you fear going outdoors...so

frustrating isn't it?? I used to know all those terms and how to spell them

too...but really you should discuss this latest symptom with your doctor,

and not rely on us to help diagnose you. Lyme disease effects so many of us

mentally. Since you mention that the winter weather is also keeping you

indoors, maybe that is the main reason you are feeling this way. It is warm

and toasty indoors and oh so safe too, no wonder we prefer it when our bones

ache. My Lyme is only 2 and half years old, but I still prefer the cool

weather to the hot summers we have had to put up with lately.

Let us know what your shrink thinks when you see him on Friday.

Marta

>From: RMcmur3194@...

>

>since being dx'ed with lyme, besides all of my nuero and physical problems

i

>have been dx'ed with a " bipolar disorder " however my biggest problem has

>cropped up in the last few weeks and i have to talk to my shrink about it

on

>Friday... i am now very fearful of leaving my house even for short

>times.....

[Guest guest]

Would it be called agoraphobia? I believe I have

some of that these days too. I seldom get out of the

house due to the pain, and have " reasoned " it out for

myself that getting out of the house increases the pain,

thus, I don't want to get out of the house. I get out to

go to the doctor, rarely anything else.

I also agree, it takes a doctor to determine these issues

and not necessarily others with Lyme because so much is

different for each one of us. I just don't mention it to my

doctors at this time because there is so much else going

on and frankly I don't feel good enough to have anyone

forcing me out of my home when I don't want to go out

because of increased pain. When the pain is less, I am

able and willing to leave the house, so possibly not true

disorder but possibly bordering on it.

Wishing us all health and freedom from pain,

both physical and emotiona -

Marta McCoy wrote:

> From: " Marta McCoy " <mlmccoy@...>

>

> Poor Reid,

> I do hope that you are not suffering from a new disorder...darned if I

> can recall the name of the one where you fear going outdoors...so

> frustrating isn't it?? I used to know all those terms and how to spell them

> too...but really you should discuss this latest symptom with your doctor,

> and not rely on us to help diagnose you.

[Guest guest]

That's the word, thanks Sandi!

Marta

>From: <swsftwtx@...>

>

>Would it be called agoraphobia? I believe I have

>some of that these days too.

[Guest guest]

I can't tell ou the overwhelming relief I felt when I read your letter,

Reid.

In fact, I printed it to show my husband.

I am EXACTLY the same way. It is so unlike me but this is what I have

become-reclusive and supersensitive to the cold, and totally reluctant

to do anything that involves going out the front door....

I think that when people have been sick for a long time and get a lot of

" you LOOK allright " stares from casual acquaintances and when people

have that " you always have a problem " look even if you don't complain

but they just know, it just becomes easier to hide in a safe place. Or

maybe we are all just crazy. The one thing I do know for sure is that

these symptoms are Lyme related!!!!!

That has to help a little. <G>

Hugs,

Alison

--

[Guest guest]

Hi Reid,

It is not unusual for people to become agoraphobic after being

housebound with a long illness. I think we Lymies are even more prone

to it since anxiety and panic attacks can be symptoms of Lyme and can

cause agoraphoba.. It might well go away on its own when you are

feeling better physically. If not, don't worry because it is very

treatable with behavior therapy and /or medicaation . I'm guessing that

you are less upset about not going out, since it's cold now anyway,

than you are about having this fear in the first place - thinking you're

going nuts or that you're never going to be able to get over it,. You

are not

'losing it " and you will get over the fear.

I don't have an actual fear of going out, but I know I find it very

exhausting and stressful to go out when I'm tired. I want to keep my

space as small as possible when I'm feeling bad. I'm sure there must be

something biological about it. I know when I've had a sick pet, it has

usually found a corner of the closet to hide in.

which sometimes sounds pretty good to me.

Although I know it sounds hollow, please try not to worry too much about

this symptom because it is reversible and very understandable under the

circumstances.

Ellen

[Guest guest]

thanks to all who replied to my post , i figured it has to do with being ill

but will check with the shrink anyway......sometimes i just want to scream

over what this disease has done to me,my family and my way of living.....the

drs. say learn to live with it....i am trying but sometimes it is very

difficult as u all know....thank god for this forum.....by the way a friend of

mine runs 1-800-tickbite yes , it is and infusion co. in new jersey,and yes

they recomend lld who WANT to be named not ALL LLD'S..... the person who runs

the lyme disease care center as it is called lost his brother ( a very close

friend of mine) to complications from this disease at the age of 38.....he has

all of our best intentions at heart believe me.....

Reid

[Guest guest]

alison, thank you, it is not just me......just for me to drive a block to get

the newspapers take talking myself into it......it sucks......i use to be very

outgoing now i would rather be by myself so much for misery loves

company,.....when i don't feel good (always) i would rather be at home,warm,

in my bed or on the computer.....guess i'm just a big baby but.....oh well

glad i could help u with ur hubby.....i really think that spouses should have

a support group too.....was going to start a combination group here in north

jersey last year but then i went farther downhill and can not orginize it(lyme

brained fool i am)

Reid

[Guest guest]

God, I hope you're right. I think I would have a better chance if my

problem was just tick bite but with this stupid vaccine roaming my

bloodstream...who knows what those people really gave me? One doctor

told me " off the record " that it was a genetic thing that " makes " my

body think it has Lyme but it doesn't really and abx won't help because

there is nothing to kill!

Well...the + Western Blot negated that but maybe there is some substance

to this doctor's theory...and if there is, I don't know if there really

is help for me, but I can always hope, and thank God for my doctor!

Hugs,

Alison

--

[Guest guest]

Reid, this is good to know about 1800 tick bite. I know they were very

helpful with me, but one becomes skeptical after falling through the cracks

with so many of the medical professionals out there.

Take Care

Amy

[Guest guest]

The support group is a GREAT idea, Reid! Sometimes, especially when I am

in a rage, I feel sl sorry for him! I used to be so even tempered and

now I foam at the mouth if you LOOK at me the wrong way! I hate myself

for it but I have no control over it! he is really pretty good about who

I have become-fat, nasty, and totally dependent on him for EVERYTHING!

But he is also now on Paxil and I know this is because of yours truly!

Maybe we can convince them to start an online support group, something

like what we have going here!

Alison

--

[Guest guest]

Hi , Wow that is a lot of medicine. How are you fairing with it. What

is raxzr I have never heard of it. How long does the Dr. want to keep you on

the meds. Do you feel your symptoms are disapearing. Sorry for all the

questions, try and write back when you get a chance. I pray all of your meds

can cure you. Feel better -Val