RE: MED: DO we get better?

[Guest guest]

Hi,

I would like to know how well treatments have worked for people. I realize

that it depends on stage of illness, but is this something that we will

always have to live with?

Are there people totally disabled with this even when treated? I am

disabled myself with the ton of things I have, and keep hoping for

treatment that will improve my health.

My Lyme bible has been Hanners book about here fight with lyme and I

know she did recover. I had a chance to talk with her and she said her

case was atypical and that she was diagnosed by treatment. It was a fluke

that she was treated at all - she listened to a program about a chemist

doing work in this area and she called him. Most of you probably know of

her though!

I have an appointment with a doctor and am on waiting list to see one

closer to me.

I would appreciate any feedback of recovery and what has worked for people.

Thanks!!

Take care,

CHristie

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[Guest guest]

> From: lovey38@...

>

>Christie, as far as I know, there is no " cure " for lyme disease.

REALLY?? Oh dear, I thought antibotics killed the bugs!!

>However, I am quite sure I first had lyme disease as a child (about 8 yrs

>old). In 1968 (married in '59) I had undiagnosed

> " tick paralysis " which lasted a little over a week.

>ever after. Few good years then unexplained illnesses, got better, more

>unexplained illnesses, etc.

This seems to be a pattern!

Must have caught two or three of the 'new' flu viruses going

>around. " That was the beginning of my ehrlichiosis, I believe. Started

>going downhill after that. Was in/out of hospital for various

>complaints, bloodclots, heart palpatations, had heart cath, you name it.

>Had joint pain in major joints.

This sounds like me! Do you have diagnoses besides lyme - as

cardiovascular disease?

Diagnosed with Fibromyalgia (which at

>that time was a " dump-all " for what they didnt understand.

I have the CFIDS/FM Dx along with various lupus and related problems. It

sounds like these illnesses are all just one big syndrome, although I know

they aren't. However, the overlap in signs, progress and treatments is

amazing.

I believe the steroid shots did my immune

>system in which left me wide open for the lyme spirochete to party.

Oh, good grief! I have been on prednisone!

To

>answer your question, Yes you can have some good years. Try to keep your

>immune system healthy so you can stave off the spirochetes and keep them

>in remission. Exercise builds new cells, tissue, nerve sheaths, etc.

I used to be heave exerciser and now am exercise intolerant. I am left

fatigued for days, even weight bearing exercise hurts joints so much that I

can lose a lot of use of an arm, for instance. I want to exercise and need

to - I cannot lose weight tho I eat little, and I hate way my body has

gotten!!

>Eating healthy does too. Sorry for this long story. I havent written it

>down before. Lovey

You have been through a lot! I have been trying for disability for 6 years

- how long it did it take you?

>

> From: Marie Henson <henson2@...>

>Subject: Re: RE: MED: DO we get better?

>About getting better: I know of at least 2 yes's to that question!

>

>The first is someone who caught it early. But the other example is

>someone who suffered a long time.

What were the treatments?

> From: " Vicki & Ferraro (home) " <ferraroa@...>

>Subject: Re: RE: MED: DO we get better?

>

>Marie,

>

>But do you know how she got better, and for how long has she been better.

>Hate to be so pessimistic, but I'm thinking remission.

Yes, How long have they been well?

Thank you all for writing. I always was told I would get better from all

the mysterious things I had wrong, but I wish one of the doctors would have

been realistic enough to say that I might be chronically ill. I feel let

down by docs who dismiss our symtpoms - I have made major life decisions

based on getting better. For example, I've been told health would improve

if I were out of stress of an abusive marriage, but now I fear poverty as

much- especially so many safety nets have been taken away. Oh well, I will

still do any treatment that might help.

I have started an experimental treatment already using low dose oral

interferon which is in clinical trials for FM, Sjogrens and it is used in

people with CFIDS and lupus. It has help some bedridden people get their

lives back. I hope it will not interfere with lyme testing, but will find

out for sure on Monday.

If anyone know of anyone who got better, please write about it! And are

there people here who are familiar with Hanner - who wrote books on

her Lyme and living with undiagnosed illness.

And Cheryl, yes I did see your page and I bookmarked it! You letter is

here somewhere in my clutter of mail!

Take care,

CHristie

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