WOW! Have you been riding a bucking bronco or what?

Is that what they say "out west"?

Here we just say... "ya look like you've been rode hard and put away wet."

I am sorry you have had to deal with the stinking nightmares that smother the lives of folks who have Lyme.

But the good news is... you CAN feel better.

And you have found a spot here... kinda like "Cheers"... where everyone knows your name and everyone cares.

First off.. there are over 4,000 members here.

Sooooo.. you are NOT alone anymore.

Plus.. the good news... we are free. Goofy sometimes... but free none the less.

It sure sounds like you have Lyme disease. I am happy to hear you are getting some help.

After reading your post... it doesn't look like there is anything "abnormal" in your situation that would lead ME to believe you can not get better.

It does take time... something even I don't like to admit to myself... or sit and wait for.

There is no miracle cure that allows all of us to take a few pills and jump back to the way it use to be. It is an individual approach and it CAN... given the right circumstances... work for you. Trial and error... then feel better.

Since you have been doing some reading already.. I won't post links now.

I am a bit on the stupid side today... so I am hoping others will join in and welcome you. They will help you in any way they can.

They are the BEST.

But warning.. do be careful... some of them like to tease folks a bit....

NOT ME of course.. but some of THEM do it..

So... sit back... and know you are not alone... and know that we will all pitch in to help you. OK?

PS...

It sounds like you have a lovely family... we should all be so lucky, Grandma.

1st let me tell you...Lyme is not taken seriously anywhere in the US. AIDS in the cash cow right now and it gets the most attention.

Lyme is a terrible disease and it is up there with anything else you could have gotten.

One thing that you did not mention. Have you been tested for other tick diseases?? You could have some others in addition, to the Lyme.

You are fortunate to have had a positive test. Many people have negative tests and are infected with Lyme (delaying treatment even longer).

First off, don't underrate the seriousness of Lyme Disease. As you know, it is disrupting your life in a big way.

It definitely is NOT a "wait & see" disease. It's a progressive disease, meaning people with Lyme won't feel better until they get adequate treatment.
All of your symptoms are typical of Lyme disease and co-infections like Babesiosis, Ehrlichiosis, Bartonella (all transmitted by tick bite).

How were you diagnosed with Lyme?
Were you checked for any co-infections?

Go to www.ilads.org/guidelines_summary.htm
Print & take a copy to your dr. It's important info everyone should read.
# 10 begins "There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease..."

Go to www.ilads.org/burrascano_1102.htm
Print "Diag Hints & Treat Guidelines..." & give your dr a copy.
32 pages of excellent info by one of the very best Lyme Literate Med Drs (LLMDs).

According to Dr B's guidelines, 3 weeks of IV Rocephin is not enough. Neither is 100 mg Doxycycline a day.

page 16: Antibiotics - Doxycycline
Adults: 100 mg qid (4 times a day) with food.

pages 17-18: Treatment Categories
Here are a few exerpts. Please read it completely.

Disseminated Disease - milder symptoms present for less than 1 yr.....
Adults: oral therapy until no active disease for 4 weeks.
Some now say NO symptoms 6 to 8 weeks to be sure treatment is adequate.

Adults: IV therapy for at least 6 weeks(until clearly improved). Follow with oral therapy....until no active disease for 6-8 weeks.

Disseminated disease present greater than 1 yr, more severely ill patients...
Extended IV therapy (10 or more weeks) then oral...

pages 4-5 & 20-24: Co-Infections

pages 24 & 29: Acidophilus - very important when taking stronger doses of antibiotics (abx).
Abx kill good bacteria along with the bad, so the good bacteria must be replenished in the body. Dr B recommends 2 acidophilus (from Health Food Store) with each meal.

If you're taking abx with meal, plan snacks for the acidoph. Have 2 hours between abx & acidoph - before & after - or it won't be able to work.

Are you sleeping well at night?

The sleepiness is quite common. I remember days when I would get up, have breakfast, then take a nap. After most activities - take another nap.
Getting a good night's sleep is a big problem with a lot of Lyme patients. It's not unusual to wake up every couple hours, so you get up tired in the morning.

What you need is an evaluation by a LLMD - ASAP.
Go to Seeking a Dr (here on LymeNet) & put your location in the title. Drs names are not given here unless they've given permission, but info will be e-mailed to you.

See if your dr would be willing to work with a LLMD in treating you. Then you wouldn't have to travel to the LLMD as often & your dr would be learning the latest treatment info from a Lyme expert. It's a WIN - WIN situation.

Dr C, in Springfield, Missouri is an excellent LLMD.
Read "What do you like about Dr C?" at http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

One suggestion-
You may get more responses if you add spaces to your post. Some Lyme patients have eye problems that make it difficult to focus on a long paragraph. If it has frequent breaks, it is easier for them to read.

It's easy to add the spaces.
At the top right, click the "edit pencil" & every 4, 5 or 6 lines, hit "enter" 2 times to add a space.

Check "Links for new LymeNet members" for all aspects of Tick-Borne Diseases (TBDs). http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

quote:

---

Originally posted by Tincup:
Welcome welcome!

WOW! Have you been riding a bucking bronco or what?

Is that what they say "out west"?

Here we just say... "ya look like you've been rode hard and put away wet."

I am sorry you have had to deal with the stinking nightmares that smother the lives of folks who have Lyme.

But the good news is... you CAN feel better.

And you have found a spot here... kinda like "Cheers"... where everyone knows your name and everyone cares.

First off.. there are over 4,000 members here.

Sooooo.. you are NOT alone anymore.

Plus.. the good news... we are free. Goofy sometimes... but free none the less.

It sure sounds like you have Lyme disease. I am happy to hear you are getting some help.

After reading your post... it doesn't look like there is anything "abnormal" in your situation that would lead ME to believe you can not get better.

It does take time... something even I don't like to admit to myself... or sit and wait for.

There is no miracle cure that allows all of us to take a few pills and jump back to the way it use to be. It is an individual approach and it CAN... given the right circumstances... work for you. Trial and error... then feel better.

Since you have been doing some reading already.. I won't post links now.

I am a bit on the stupid side today... so I am hoping others will join in and welcome you. They will help you in any way they can.

They are the BEST.

But warning.. do be careful... some of them like to tease folks a bit....

NOT ME of course.. but some of THEM do it..

So... sit back... and know you are not alone... and know that we will all pitch in to help you. OK?

PS...

It sounds like you have a lovely family... we should all be so lucky, Grandma.

---

quote:

---

Originally posted by Kara Tyson:
Hi Grandma,

1st let me tell you...Lyme is not taken seriously anywhere in the US. AIDS in the cash cow right now and it gets the most attention.

Lyme is a terrible disease and it is up there with anything else you could have gotten.

One thing that you did not mention. Have you been tested for other tick diseases?? You could have some others in addition, to the Lyme.

You are fortunate to have had a positive test. Many people have negative tests and are infected with Lyme (delaying treatment even longer).

I am sorry that you are infected. But you will meet many people here who understand what you have and are going thru.

---

I don't think that my doctor tested for any other diseases, but I am going to talk to him to insist that we do that.

I will make sure that my doctor does test for them though! Thanks again.

quote:

---

Originally posted by cbb:
Hi GrandmaCLD,
Welcome to LymeNet. So sorry you've had to deal with so much. Lots of people here on LymeNet have been thru similar circumstances, so you'll find lots of understanding here.

First off, don't underrate the seriousness of Lyme Disease. As you know, it is disrupting your life in a big way.

It definitely is NOT a "wait & see" disease. It's a progressive disease, meaning people with Lyme won't feel better until they get adequate treatment.
All of your symptoms are typical of Lyme disease and co-infections like Babesiosis, Ehrlichiosis, Bartonella (all transmitted by tick bite).

How were you diagnosed with Lyme?
Were you checked for any co-infections?

Go to www.ilads.org/guidelines_summary.htm
Print & take a copy to your dr. It's important info everyone should read.
# 10 begins "There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease..."

Go to www.ilads.org/burrascano_1102.htm
Print "Diag Hints & Treat Guidelines..." & give your dr a copy.
32 pages of excellent info by one of the very best Lyme Literate Med Drs (LLMDs).

According to Dr B's guidelines, 3 weeks of IV Rocephin is not enough. Neither is 100 mg Doxycycline a day.

page 16: Antibiotics - Doxycycline
Adults: 100 mg qid (4 times a day) with food.

pages 17-18: Treatment Categories
Here are a few exerpts. Please read it completely.

Disseminated Disease - milder symptoms present for less than 1 yr.....
Adults: oral therapy until no active disease for 4 weeks.
Some now say NO symptoms 6 to 8 weeks to be sure treatment is adequate.

Adults: IV therapy for at least 6 weeks(until clearly improved). Follow with oral therapy....until no active disease for 6-8 weeks.

Disseminated disease present greater than 1 yr, more severely ill patients...
Extended IV therapy (10 or more weeks) then oral...

pages 4-5 & 20-24: Co-Infections

pages 24 & 29: Acidophilus - very important when taking stronger doses of antibiotics (abx).
Abx kill good bacteria along with the bad, so the good bacteria must be replenished in the body. Dr B recommends 2 acidophilus (from Health Food Store) with each meal.

If you're taking abx with meal, plan snacks for the acidoph. Have 2 hours between abx & acidoph - before & after - or it won't be able to work.

Are you sleeping well at night?

The sleepiness is quite common. I remember days when I would get up, have breakfast, then take a nap. After most activities - take another nap.
Getting a good night's sleep is a big problem with a lot of Lyme patients. It's not unusual to wake up every couple hours, so you get up tired in the morning.

What you need is an evaluation by a LLMD - ASAP.
Go to Seeking a Dr (here on LymeNet) & put your location in the title. Drs names are not given here unless they've given permission, but info will be e-mailed to you.

See if your dr would be willing to work with a LLMD in treating you. Then you wouldn't have to travel to the LLMD as often & your dr would be learning the latest treatment info from a Lyme expert. It's a WIN - WIN situation.

Dr C, in Springfield, Missouri is an excellent LLMD.
Read "What do you like about Dr C?" at http://flash.lymenet.org/ubb/Forum3/HTML/004140.html

One suggestion-
You may get more responses if you add spaces to your post. Some Lyme patients have eye problems that make it difficult to focus on a long paragraph. If it has frequent breaks, it is easier for them to read.

It's easy to add the spaces.
At the top right, click the "edit pencil" & every 4, 5 or 6 lines, hit "enter" 2 times to add a space.

Check "Links for new LymeNet members" for all aspects of Tick-Borne Diseases (TBDs). http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Again, welcome to LymeNet.
Ask as many questions as you need to & we'll do our best to help you with the answers.

---