I would gladly trade 1 day of Lyme for a day in a burn center. Because at least at the burn center people tried to help!
 

How to explain your pain?
That's a tough question to answer.
When people say you don't look like you're sick, you can always smile & say
"It's deceptive packaging. Actually, I'm in a lot of pain."

People who have not "experienced" Lyme disease find it very difficult to understand what a Lyme patient lives with every day.
I wouldn't waste a lot of energy trying to convince people you're in pain, but as you improve with treatment, they should see the changes.

I recommend that you take advantage of every opportunity to educate people about Tick-Borne Diseases (TBDs). Most have little or no correct info - one reason they don't believe the pain thing.

I'm delighted you have a diagnosis, but my biggest concern for you is that you get adequate treatment. It must be a strong enough dose for a long enough time, or Lyme will flare up again at some time in the future.

My 2nd concern is that you could have co-infections (like Babesiosis, Ehrlichiosis, Bartonella) which complicate LD.

Hopefully, the Infectious Disease Dr who diagnosed you is a Lyme Literate Medical Dr (LLMD). It's to his credit that he recognized LD, but it's very important to know his treatment protocol.

Go to Seeking a Dr & ask for LLMDs in your area. We don't give dr's names here unless they have given permission, but info will be e-mailed to you. If your dr's name is sent to you - that's great.

Bottom line: you need to have a dr with lots of "satisfied customers."

On the left, click Support Groups & contact any in your state or surrounding states.
They should be very helpful in a lot of ways.

For reliable info on all aspects of TBDs,
go to www.ilads.org/burrascano_1102.htm
Print "Diagnostic Hints & Treat Guidelines" by Dr Burrascano - 32 pages of excellent info.
Highlight, underline, write in the margins....anything to help you find info again that fits your case.

pages 16-18: Antibiotic Choices & Treatment Categories
pages 4-5 & 20-24: Co-Infections

What antibiotics (abx) are you taking?
Dose per day & length of treatment?
Do you have other symptoms?

 

One of the things I do is describe the pain in somewhat of a visual manner. I sometimes have severe pain in my upper back. I describe it to people by saying it feels as if my muscles are being cut from the bone with a burning hot knife. I think people get the idea then.

I hope you are still treating your pain symptoms. I actually keep going to the pain doc that diagnosed me with fibro. He may not believe 100% that I have Lyme, but he believes I have pain.

Welcome to the family...and what a

disfunctional family it is.

As for your question, I have given up on

trying to explain the severity of lyme

symptoms.

The fact is, some ignorant people will

always feel that you are faking or "dogging"

it if they see you OK one day and terrible

the next.

From their point of view, often we look

fine to them just when we actually feel our

worst.

I guess it's like trying to explain colors to

a dog. They just can't understand.

Now when people ask how I'm feeling, I just

try and smile, and reply "right this second.

...OK ( or not bad, or even lousy)".

So far, approaching people this way has been

successful in helping them understand the

ever-changing ways of lyme.

I hope I don't seem to be coming across as

Pollyanna.

Unfortunately I have just come to

the conclusion that it takes time for our

loved ones to accept what a fight we have in

store for us and there's not much they can

do to help.

I can't add anything much to what you've

already been told about treatment.

The only thing I can suggest may be actually

one of the hardest thing to do. Go easy on

yourself. The LD has a pretty good head start

on you here, treatment may seem to progress

slowly.

Take a cue from these smileys here and put

one on every day you seem to feel a little

better. You may be surprised how many you'll

collect before long.

It's wild isn't it? Wouldn't believe it myself it it wasn't happening to me.

Kent...the troutster
 

there are over 100 strains in the US alone..each affects you its own way...each reacts to antibiotic treatment in its own way... and, add to that the fact that each persons body chemistry changes the way all of these antibiotics would work anyway, and you have a screwed up mess....

Now....they say my treatment may be lifetime....but, Screw 'em sister...I'm gonna beat this quicker.

Trout