Re: feeling hopeless

July 20, 1999

In a message dated 7/20/99 12:36:08 PM Eastern Daylight Time,

watkins@... writes:

<< s known to man, ( I'm a really new subscriber), but I just don't

ever see anyone saying they are cured, feeling good, and back to their

normal lifestyle. Am I mistaken? Is there any hope?

If anyone can contradict my view I would be thrilled. If there is a cure,

someone please tell what it is? At this point I feel it's useless to waste

any more time, energy, and money to go to any doctors. I think I'd better >>

Barbra,

Yes there is hope. I think the reason why you don't hear people say they are

better because they have gone on with there lives. I was VERY SICK from

89-92. I was in remission and doing GREAT for 6 years. (I got my Ba degree

started working full time) I relasped last year due to working too many

hours. I think the key is to find a good LLMD. If there is none around you

find someone who will treat you by phone!! There are many great LLMD that

treat people by prhone. I can think of 4 off the top of my head right now.

Once you find that doctor that's half the battle. Then you must find the

right treatment that works for you. If that's trying an array of antibotics

then that's what you must do. Once you get well you must do everything you

can to stay well. Lymies need to take good care of themselves. Lots of

rest, good eating habits, light exericise, and not working too many hours.

Think of this as a small portion of your life. You need this time to get

well and then you have the rests of your life ahead of you. That's what I

need to do to get me through this. Also an antidepresant helps. I think of

getting well regaining my life, get my job back, and getting engaged to my

boyfriend. Thinking of these things keeps me going. They have to. PLEASE

don't lose hope!!! Once you lose hope, your losing the battle. Dr. B said

in his last appearance that a POSITIVE attiude helps!!!

July 20, 1999

Barbara --

I just read your posting. I am not back to my old self, but after being on the

proper antibiotics (in my case, oral Biaxin (1000 mg) and Ceftin (500 mg) per

day, my bad days now are like my good days a few months ago. I feel much, much

better. I was not as profoundly ill as some people on this group, but I went

undiagnosed for years and then was reinfected last Fall and really crashed.

Please, please find another doctor. Any doctor who would put you on 200 mg of

doxycycline per day for an established infection is *not* " Lyme Literate. " Not

not not.

You will have to travel, but it will be worth it. I know it's hard to stir

yourself into action when you are so depressed, but you must.

I'm sure folks on this list can point you toward a more reasonable doctor.

Have you taken this " LLMD " a copy of Dr. Burrascano's protocol, showing a

minimum of 300 mg of doxy? My regular doctor did read it and followed it -- he

didn't know anything about Lyme but he was willing to learn.

I did improve on the doxy, especially my joint pain, after I started taking

higher doses of it. At one point I was on 600 mg per day. Once I went off it my

symptoms returned (my current doc says it doesn't knock out established

infections, just tamps them down), but at least it let me get around and do what

I had to do until I found my current doctor.

Why not bring the suggestion to your " LLMD " that some of the top Lyme Docs in

the country now are using this combo of 1000 mg of Biaxin and 500 of Ceftin, and

you're willing to be a guinea pig? They are established abx, used in lots of

other illnesses -- it's worth a shot.

There are quite a few folks on this list who have improved greatly with

medication; I'm sure you'll hear from a lot of them too. There are also lots of

things you could be doing nutritionally. If you're interested, I'll send you a

list of the supplements I'm taking and how they've helped me.

I would also suggested asking for an antidepressant medication. I know a lot of

folks on this list, including my fiance, have used them and have found them to

be literal lifesavers. That would help give you the energy you need to continue

to fight. Because it will be a self-fulfilling prophecy -- if you don't get

proper treatment, you will end up housebound. But it doesn't have to be that

way.

Believe me when I say -- there is hope and improvement out there -- you just are

in a low spot right now.

Jean

July 20, 1999

Who are the 4 Lyme doctors who treat by phone

July 20, 1999

Hi Barbara,

Never apologize for posting your thoughts to this list, good or bad,

that is why we are here, to offer support. Each and everyone of us has been

exactly where you are right now. So far you have received some excellent

advice from and Bernadette, they both agree you need to seek a more

Lyme knowledgeable doctor. Texas is a huge state, can you narrow down where

you live and we will do our utmost to find one for you.

As for a cure for Lyme, I don't think we will ever know that until they

invent a reliable blood test to locate spirochetes in the body, not just the

fluids. If they can do that we are half way home. I have not heard of

cures, but I have heard of remissions, it is true that once most people are

feeling well again, they move on, they don't want to hang out on groups like

this one, they want to live their lives to the fullest, who can blame them?

Bernadette reports she has gotten most of her life back and she is a rare

one who has chosen to stay and help others who are suffering, for that she

should be commended.

I have been suffering from this disease for just about three years now,

much less time than you have, and I have experienced the ups and downs of

the disease and the hopeless feeling too. But it does pass....until you get

on a stronger dose of meds to help fight your disease you are stuck in a

rut. I have stopped my abx as an experiment, I am really anxious to get

back on them as I am starting to feel lots worse off them. I am trying to

hold out till I see a new Inf. disease doctor, hoping too that being off

abx, I will test positive for this disease again. Sandi on this list,

lives in the Fort Worth area, I know she has a good Lyme doctor and I am

sure you will be hearing from her. Please let us know if we can do anything

else to help you feel better.

{{{{{{{{HUGS}}}}}}}

Marta (NJ)

>From: " Barbara Watkins " <watkins@...>

>

>I feel very hopeless here, and please forgive me list friends, I don't want

>to bring anyone else down with me, but I am really believing that lyme is

an

>incureable disease, with very little hope for even transitory relief of

>symptoms. It took me four years to get an accurate dx, and I when I

finally

>got that I thought NOW I can get some treatment and get out of this

>mess! I don't think that's going to happen. I managed to get to see what

>seems to be the only LLD in Texas, but I'm not getting anywhere there

>either. I'm on 100mg of doxy twice a day which we all know is doing

>nothing. I've given up on my primary doc who wants nothing to do with my

>lyme, and has referred me back to insurance managed rhuemy who gave me

>methotraxate the last time I was there. She determined that I have

>rhumatoid arthuritis and fibromyalgia. I'm sure if I go see her again

she'll

>be very cold and irked that I didn't take here prescription, which I

didn't

>because I had learned that steroids are bad for lymies.

> On the other hand, even if I was able to get all the big gun meds, I

still

>feel it's hopeless.

> I see on this list, many folks talking about pic lines, IV vitamin c,

and

>all the other meds, and please please forgive me, I mean no offense in the

>world, but it looks like in spite of all the above mentioned treatments and

>any others known to man, ( I'm a really new subscriber), but I just don't

>ever see anyone saying they are cured, feeling good, and back to their

>normal lifestyle. Am I mistaken? Is there any hope?

> If anyone can contradict my view I would be thrilled. If there is a

cure,

>someone please tell what it is? At this point I feel it's useless to waste

>any more time, energy, and money to go to any doctors. I think I'd better

>resign myself to being almost bedfast or at least housebound, and in

>constant pain,etc. I seem to be here in tears night and day over it. I

>guess that will pass when I get myself truly resigned to it, but it sure is

>a difficult thing to do.

> I apologize for being a whiney crybaby, and I give many thanks to all

of

>you on this list for letting me vent my distress. I know you have your own

>pain and trouble and don't need to hear someone else's, and I send you my

>best wishes and prayers.

>Barbara

July 20, 1999

Hi Barbara,

I think most of us have felt the frustration and desperation that you

are now feeling. I know that I have...10 yrs. of fighting doctors...14

years of being sick without treatment...and even now that I am being

treated, I still wonder if I'll ever get better.

I can tell you that certain abx work differently on different people. I

have had 4 functional days since I started Biaxin...before that, I was

basically bedridden every day. It's not much, but it's a start. My

daughter has had success with oral amoxycillan. The dosage of Doxy that

you are taking is low (my former Neuro had me on that dosage...but I did

Herx), but it is a start.

Since he is the only LLMD you have been able to find, why not print out

info for him about different abx and Lyme, and ask him to prescribe one

that is more effective on a more established LD infection? If not, maybe

someone else on the list (Ann?) can let you know if they know of a

more LLMD in Texas.

DON'T GIVE UP!!!!

MANY HUGS! {{{{{{{Barbara}}}}}}}

Joan LI, NY

July 20, 1999

>>>Is there any hope?

If anyone can contradict my view I would be thrilled. If there is a cure,

someone please tell what it is? At this point I feel it's useless to waste

any more time, energy, and money to go to any doctors. I think I'd better

resign myself to being almost bedfast or at least housebound, and in

constant pain,etc. I seem to be here in tears night and day over it. I

guess that will pass when I get myself truly resigned to it, but it sure is

a difficult thing to do. <<<

Boy, does this sound familiar huh Marta? I've been like this several times

and my friend Marta and some of the people on the NG got me through it.

I had become clinically depressed NOT just because my life as I'd known

it seemed gone ... but also because depression is also a SYMPTOM of Lyme!

I was forced to take Paxil -- which I have never done before and I resented

it -- and then later switched to Wellbutrin and for me, that was a great

drug. Someone explained that it's like a car being a quart low in oil. These

drugs are designed to elevate your serontin levels (like putting a quart of

oil in your car)

which get depleted when your end up in the position we're in. What I liked

about

the Wellbutrin was, I took it as directed for several months, then one day I

didn't

take all my doses, then after a while, I was taking it at all. It was like my

it had

raised my serontin to the proper level and I by body just knew I didn't need

it

anymore.

If you have found that kind of help, please do so. You can't beat this thing

on willpower in my opinion. Good luck and keep using this list because too

many of us know exactly how you feel.

My very best,

Marleen

July 20, 1999

barbara

We all deal with pain in are own ways. Sometimes we blow off

steam, sometimes we turn to others just for support.Try to find any little

thing that can put a smile on your face. reading the good book helps me

when times rough.Ialso try to spend time with my little girl (8yrs old).That

to me is really quiality time. Sometimes I can't physically do the things I

would like to do with her. But just being able to see things she does ,brings

a warm feeling from head to toe and even though the pain is still there. It

seems like it subsides if just for a moment.There is something for everybody

for some it is this page for others it is hobbies ,reading ,loved

ones,movies,plants,pets,etc,,,,Some of the best things are right in front of

youand if sit back and look you will notice that sometmes the simplist thing

can seperate you from the pain and even put a smile on your face.I hope this

can help. willie

July 21, 1999

Hey mother goose (Barbara):

I think I like everyone's advice here...to see a new doc. I think you should

come up to see me and see a doc here! Yup, that's it, you need to see one in NY

and stay with me!!!!!!! We can be cured together!!! You're not giving up, you

hear?! I'm standing right here with my fluffy feathered pompoms rooting for ya!

your favorite gosling ;o)

July 21, 1999

hi barbara,

there is always hope. sometimes we bury it, but it is always there. it is part

of the human spirit.

it sounds to me as if you are grieving the loss of health and the life you were

expecting and hoping for. this is perfectly natural.

you are in the beginning stages of the grieving process. you've suffered a loss

and you need to adjust to it. grieving is healthy and normal...to a certain

point.

i don't know how long you have been sick or when you were dx'd, but if you have

been crying like this and feeling hopeless for some time now, antidepressants

could be of great help to you.

my daughter got very sick when she was 8. she is 10 now and just dx'd june 9th.

i know about lost dreams and expectations.

the most important lesson i've learned is:

it is not what happens to us in our lives that matters. it is what we do with

what happens to us that matters. it is all in the playing.

try to get some help (emotional) and a new lyme doctor.

peace, health and hope,

kay

>>>Is there any hope?

If anyone can contradict my view I would be thrilled. If there is a cure,

someone please tell what it is? At this point I feel it's useless to waste

any more time, energy, and money to go to any doctors. I think I'd better

resign myself to being almost bedfast or at least housebound, and in

constant pain,etc. I seem to be here in tears night and day over it. I

guess that will pass when I get myself truly resigned to it, but it sure is

a difficult thing to do.<<<

July 22, 1999

>From: McDermott <pattymcd@...>

>

>Hi Barbara,

>

>Marta's been calling me the " eternal optimist " almost since the day we

>met, <G> so maybe I can share some of that with you.

Yes, I most certainly have, and the really maddening thing is Patty is not

on any antidepressant meds either.....LOL! She is naturally a positive

person, and I am jealous.

LOL!

Hugs,

Marta NJ

August 17, 2005

Don't blame yourself!! We all did things the way that we were told,

back sleeping, etc. and had the same outcome. You are a great mom to

care about Gavin!! How old is he now?

Natasha

--- In Plagiocephaly , " Cindie " <draganstarz@y...>

wrote:

> i was just wondering if there is anyone else out there feeling the

> same way. My son was diagnosed with " plagi. " My doctor is a big

> opponent of the headband and did a study which suggested the band

did

> no better than positioning. i ihave had a feeling he has had a flat

> head since Gavin was 2 months old so i did everything i was supposed

> to, including tummy time and lots of sitting up. Now people tell me

> that everything i did was fine, but that doesn't change the fact

that

> my son's head is flat on one side. I just feel like a bad mom, or

> that there is somethng else i should be doing. i talk to my family

> and friends and they tell me not to worry. Is there any one else who

> went/is going through this feeling? any suggestions on what to do?

August 17, 2005

Don't blame yourself!! We all did things the way that we were told,

back sleeping, etc. and had the same outcome. You are a great mom to

care about Gavin!! How old is he now?

Natasha

--- In Plagiocephaly , " Cindie " <draganstarz@y...>

wrote:

> i was just wondering if there is anyone else out there feeling the

> same way. My son was diagnosed with " plagi. " My doctor is a big

> opponent of the headband and did a study which suggested the band

did

> no better than positioning. i ihave had a feeling he has had a flat

> head since Gavin was 2 months old so i did everything i was supposed

> to, including tummy time and lots of sitting up. Now people tell me

> that everything i did was fine, but that doesn't change the fact

that

> my son's head is flat on one side. I just feel like a bad mom, or

> that there is somethng else i should be doing. i talk to my family

> and friends and they tell me not to worry. Is there any one else who

> went/is going through this feeling? any suggestions on what to do?

August 17, 2005

I was definitely feeling that way before Logan and Brecken were

banded. They had plagio/brachy & tort pretty much from birth. I kept

asking the ped and she said that they would be referred at 6 months if

it didn't get better (I have an HMO). So at six months they were

referred to the cranial facial specialist. They spent about 5 minutes

max looking at each of them, no measuring or anything, and said

Brecken needed a helmet and Logan just had a triangle shaped head!!

They wrote a script for B but my insurance would send me to a place

that had a passive helmet and at 7 months that wouldn't work for

them. I was so frustrated, discouraged, and felt hopeless. But after

chatting on here I decided to go to Cranial Tech. I talked to someone

there and they were very nice and it made me feel better. CT is 2

hours from me, but I wanted to at least get a consultation. They both

rated as severe. Logan's was actually worse than Breckens!! But

because he didn't have quite as much asymmetry (he has brachy) the

cranial facial people said a helmet would make him asymmetrical!!! So

I got my ped to write the script for Logan (she was suprised that the

specialist didn't write one for both of them!). We are paying out of

pocket and they are getting their 2nd bands sometime in the next

week. My ped wrote the script for both this time.

I'm soooo pleased with CT and the progress I'm seeing!!! If you go

for a consultation they will let you know if he needs a band or not.

They won't band him if he doesn't need it.

I'm sorry you feel hopeless - I've been there and it stinks!! I hope

you find something that works for you!

Jenn

Logan 11 months bracy/tort DOCband #1 5/11/05

Brecken 11 months plagio/tort DOCband #1 5/2/05

--- In Plagiocephaly , " Cindie " <draganstarz@y...>

wrote:

> i was just wondering if there is anyone else out there feeling the

> same way. My son was diagnosed with " plagi. " My doctor is a big

> opponent of the headband and did a study which suggested the band

did

> no better than positioning. i ihave had a feeling he has had a flat

> head since Gavin was 2 months old so i did everything i was supposed

> to, including tummy time and lots of sitting up. Now people tell me

> that everything i did was fine, but that doesn't change the fact

that

> my son's head is flat on one side. I just feel like a bad mom, or

> that there is somethng else i should be doing. i talk to my family

> and friends and they tell me not to worry. Is there any one else who

> went/is going through this feeling? any suggestions on what to do?

August 17, 2005