Thought I was getting better-ha ha!!!

February 14, 2003

Hi and Sue: I just returned from a neurologist's office yesterday and

she told me that some of the lyme patients have severe sleep apnea and need

cpap which helps oxygenate...so I have a sleep study coming up in March. My

old cpap is 5 years old and huge and cumbersome...husband couldn't sleep next

to me and I just stopped using it since it was so obtrusive to our life

together...like sleeping with scuba gear. They say that the new stuff is

lighter and easier to use...I suppose we still have a long way to go for this

technology..but I'm willing to try once more if it doesn't force my poor

husband to another room.

Best wishes,

Donna

February 14, 2003

Hi!

Me again!!!

I really thought after 10 weeks abx I was getting better.

I think I overdid it though and today feel nearly as bad as when I

had my first herx.I am so tired I found it hard to get out of bed

today.Just dragging myself aroun,really demoralizing.

I do not know how all you people who have had this longterm keep

going.

I feel so alone like something earthmoving is happening to me and

noone understands.Strange feeling!!!!

Well hopefullly tomorrow is better.

Bye for now,sue from downunder.

February 14, 2003

Dear Sue,

Be assured we do understand. Been there, done that.

Hang in there.

Martha A

February 14, 2003

I crashed too after about 10 weeks of abx. Then went into a bad herx after a new

abx, and only now (about a month later) am I turning around again. It was

incredibly frustrating to take such a big step back! Please know that you are

not alone!

But I understand how lonely it can feel. I get the sense that some people stop

wanting to sympathize after awhile. They expect you to be better by now and

start to seemt to question (though not openly) whether you are really so sick or

just a complainer. I've been using the word " relapse " with people, and that

seems to create more understanding.

The good news is that I seem to be gaining back ground a little faster than I

did the first go-round. Hang in there!

Jeff

>>> shassler64@... 02/14/03 05:57AM >>>

<tt>

Hi!

Me again!!!

I really thought after 10 weeks abx I was getting better.

I think I overdid it though and today feel nearly as bad as when I

had my first herx.I am so tired I found it hard to get out of bed

today.Just dragging myself aroun,really demoralizing.

I do not know how all you people who have had this longterm keep

going.

I feel so alone & nbsp; like something earthmoving is happening to me and

noone understands.Strange feeling!!!!

Well hopefullly tomorrow is better.

Bye for now,sue from downunder.

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February 14, 2003

I think pulsing flagyl is a good idea. Unfortunately, for me..I just can't

tolerate flagyl at all...best of luck with it...happy Valentine's Day.

Best wishes,

Donna

February 14, 2003

At my first visit with the LLMD in Hyde Park, I mentioned how dramatic and

quick the shifts were in feeling good and feeling miserable the next.

He said that this was par for the course.

This answer really helped me a lot. When I have a big shift into feeling

sick, I've been blaming myself, thinking I've eaten the wrong thing, thought

the wrong thoughts, went to bed too late, etc.

Another major thing he said was that it's going to take me a year before

I'll be functioning at a high level again. To some that may seem negative.

For me, I get a sense of assurance from the statement, after hearing about

people functioning at low levels after years and years of treatment. I also

realize that his statment means that in six months I will be halfway to high

functioning from where I am now. At least approximately. Hooray.

And tomorrow I start Flagyl. Three days on for days off for an unspecified

period of time. Along with doxy, which didn't seem to help me improve the

6-8 weeks I was on it earlier this winter.

Has anyone used Flagyl in this alternating way?

Be loving and caring to yourselves on Valentine's Day everyone.

best,

bluesky

February 14, 2003

> I think pulsing flagyl is a good idea.

Donna,

Is that what 3 days on and four days off means? Pulsing?

bluesky

February 14, 2003

In a message dated 2/14/2003 6:42:43 PM Central Standard Time,

bluesky@... writes:

> Is that what 3 days on and four days off means? Pulsing

That is what I understand it to mean...yes.

Donna

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