Having a bad day. Not with my joints...they are getting better but with my anxiety and my nausea. Plus today I was leaning up against my desk and my side hurt right above my hip. I started poking and feeling around...there may be something there. Could it be a swollen lymph node? Do any of you have a lof of nausea and anxiety? I'm goign OUT OF MY MIND RIGHT NOW! Should I be planning my funeral? Am I going to get better? I'm going to see a ID doctor on Tuesday...I know, I know...they are no good. But my dh is just wants me to go to see what he says. Dh feels I am getting the right treatment. I'm on abx for just about two months now. Please help!

You DO sound miserable!

Maybe you SHOULD be planning your funeral?

I did.

Many times.

But I was never quite lucky enough to have this junk just kill me and get it over with...

It just kept me one step above feeling like death warmed over... with NO relief for a LONG time.

Yep... it SUCKED! BIG TIME!!!

My suggestion...

Draw a picture of the idiot ducks you have been to in the past that misdiagnosed you.

Then make a list of the medications you took that didn't help.

Then make a list of every symptom you have had.

Then...

Staple or nail them to a fence post.

Then..

If you have a gun...

Use the pictures and lists for target practice!

BLOW THEM AWAY!!!

What? No gun handy?

Ok...

BURN THEM! Set those fools on fire!

If that isn't possible...

Take them outside... lay them on the ground... and stomp them to pieces.

I see anger in your tone... and I don't blame you ONE BIT!!!

You are angry at the disease.. angry that you feel so bad... angry about not being able to do things you want to...

And scared to boot!

This is all VERY understandable.

But... we goons at Lyme Net have some good advise for you... and something to think about...

"DON'T LET THE TICK WIN"

You are stronger than that stinking tick... so pick yourself up and fight!

NO FUNERAL PLANNING ALLOWED TODAY!

Not on Friday the 13th!!! Good grief!

Ok?

Now....

Let's identify the problems...

We can't fix them if we don't identify them and make a plan.

1. Anxiety.

2. Nausea

3. Pain in the hip area

4. Going out of your mind

5. Concerns about the future

6. Feeling desperate

And the WORST ONE YET...

7. Feeling desperate enough to go to an ID DUCK.

OK..

Do you have any anti-anxiety meds? Are you taking them? If your fingers aren't broke... pick up the phone, dial it... and ask the doctor for help with this situation. No need to be so miserable... at least not in the 21st century!

Are you taking meds on an empty stomach... that may be affecting your tummy.. and causing the nausea? Can you get a prescription to help with it?

If your fingers ain't broke.. pick up the phone... dial the doctor's number.. and ask for help with this.

Have you been checked for Bartonella? It can cause some swollen lymph nodes.

Could that lump improve with a GENTLE massage?

Or... is it a knot in the muscle? Would a heating pad help?

By the way...

If you stopped poking yourself in strange places.. maybe these lumps wouldn't bother you so much.

Have you painted your toe nails 10 different colors lately? That is a MUST when you feel like you are going out of your mind.

Or at least alternate the colors.

And you must walk around barefoot for a while to get the whole effect.

Important question:

Are you herxing? Or are you normally this grumpy?

(She is going to punch my lights out if she can get ahold of me.... )

Do you think a tick can destroy what you have and get away with it?

I don't think so...

Put on some warrior paint if you must.. and get ready to fight this icky little critter with all you've got!

Would you like someone to talk to who KNOWS how you feel? There are folks here who would love to talk to you. I will call you... if you are still speaking to me... and I will pay for the call. (It's free for me... so don't be getting all excited and thinking I am a nice person or nothing like that).

Do you have a screw driver handy?

If so... please tighten that loose screw you have that is encouraging you to go to see an ID DUCK.

Haven't you been "ducked" enough already?

Or do you just need another ducks picture to draw for target practice?

Ok... now that I have completely run all over you... don't you feel MUCH better?

I hope so...

Now listen to me... and remember this day and what I say...

OK?

You WILL get better.

You WILL have a good day.

You WILL be over this horrible stuff.

It can happen.

I know it can...

My funeral plans are now sitting in a file collecting dust.

If you want to talk to someone with my lack of sense and sympathy...

Send me your number..

It would be my pleasure.

[email protected]

Feel better soon... little.. no BIG.. baboon.

I knew you'd come to my rescue. I am just coming down from a herx. It lasted about three days. Yes, I have xanax to take for my anxiety but I have a three year old to take care of and they make me sleep so I try not to take them during the day...I take them at night to sleep. No, I am not usually this grumpy...I just want some reassurance or someone to tell me that this thing is beatable. Right now I should be taking care of a newborn...but instead this disease caused a miscarriage.

Your post made me cry and laugh at the same time. Thanks for that. I am just so sick and tired of feeling bad. I want my life back.

No, I have not been tested for co-infections. I never had a positive test for lyme either...but alllll the symptoms and I had the bite in late October of last year.

I come on here..day after day...see and read about everyone being sick...no one getting better. Is this thing beatable? Seriously, just tell me like it is...am I going to make it? It's hard when my three year old eats more than I do every day. It's hard when I hear my wonderfuly husband playing with my adorable little boy and I can't enjoy that. I don't have the energy.

Tin - tell me like it is. Am I going to get better? I do want to run to the nearest LLMD...which is only 13 miles away from my doorstep. But instead I'm doing what DH is asking me to do. I'm going to see the ID next Tuesday.

The thing is also that I do still have trust in my GP. Why? He got me through my thyroid problem, he got me through when they said I was going to have a rough time getting pregnant. That's why I have so much faith in him.

Sorry.. I got off-line earlier and just came back on... hurricane stuff, ya know.

I went back and read all of your other posts to see if there was anything we could do to help you.

I see that a number of folks have responded to you in the past and have been VERY helpful and have provided great information.

It might just benefit you to check back on the older posts and re-read their good advise.

In the meantime...

It is really hard when folks ask me a question about what is going to happen in the future. I don't have a crystal ball... well... actually I do... but I lost the directions and don't seem to be able to get it to work for me very well these days.

And so you know.. I am NOT a doctor.. and I am not giving "medical" advise... only a few thoughts and suggestions from experience.

You said...

"Yes, I have xanax to take for my anxiety but I have a three year old to take care of and they make me sleep so I try not to take them during the day...I take them at night to sleep."

My son was riding down the road one day with a friend of mine and they were going to go get me a dogwood tree as a gift.

My friend... Mr. STUPID... put the young boy in the truck with no seat belt on.

My friend... Mr. STUPID... did not check to be sure the door was shut properly on the passenger side.

Mr. Stupid took a sharp curve on a mountain road... the boy slid across the seat.. leaned into the door and fell out on the road.

My son was fine... other than a couple of bumps and bruises. He never whined or whimpered... never said a word.

He rode back to the house with Mr. STUPID and it wasn't till he got out of the truck and saw me that he suddenly let out a loud cry like the world was going to end.

Imagine my shock! I thought Mr. STUPID had beat him with a cactus or something the way he carried on.

Soooooooo..

What is the point?

Sometimes we all get bumps and bruises and we can handle them without much ado.

Sometimes we get bumps and bruises and they make us NUTS!

When we get those bumps and bruises and have a reaction that is not typical for us... we HAVE to assume the problem is NOT with the actual bumps and bruises.. but the way we are "taking" them.. or dealing with them at that moment.

Here is my HONEST thought.... and remember YOU asked.

The bumps and bruises you have are not good. They should NOT be happening. BUT... some days you make it through... and some days it is unbearable for you.

I think you need to address the way you are looking at the bumps and bruises.

You are having bad panic attacks from what I can tell. You probably didn't have them before you got ill?

They can be so horrible you work yourself into an uproar.

I did it.. many times over. I was sure I would die.

My BRAIN was infected.

The panic attacks were due to infection in my brain. They did not go away until I cleared up the infection and learned to deal with them.

You are just like a rabid skunk at this point.

And I say that with all due respect.. and NOT referring to the way you smell either.. but then I never smelled you.. soooooo... hmmmmm??? Sorry...

When an animal gets rabies the infection goes to the brain. That is what causes the animal to die. Before he dies he acts strange. He usually does exactly opposite of what he would normally do.

My bet is... you are a pretty tuff cookie.

Am I right?

This disease has gotten into your brain and has taken over to make you do things that are not "normal" for you.

You REALLY need to address that before you see any lasting relief.

You were given xanax... so please use it until you no longer have this problem. If you need to take 1/2 a dose.. do it. Or 1/4 a dose.. do it. DON'T be ashamed... don't be thinking you can handle all this on your own at this time.

The panic is what is making you "lose it"... not the bumps and bruises. The panic attacks are one of the worst things that can happen with this nasty Lyme stuff... so use every mode available to combat them until the infection is no longer controlling your brain.

Once the panic is under control.. the bumps and bruises will be more "livable" until they are gone.

You said...

"Right now I should be taking care of a newborn...but instead this disease caused a miscarriage."

I hurt to even think this has happened. Please know my heart goes out to you and your family...

You said..

"I am just so sick and tired of feeling bad. I want my life back."

You WILL get it back. There is NO doubt in MY mind. It will take a while.. MUCH longer than ANY of us would like... but it DOES happen. As a matter of fact.. you HAVE seen some good days... then a slide backwards. So you DO know this can happen.

Hang on to the memory of those good days... they WILL return.

You said..

"No, I have not been tested for co-infections."

Tell me... tell me do...

Would you bake an apple pie without the apples?

Would you drive a car with no tires?

Would you get dressed and go to town on Saturday night and not wear any pants?

Well.. don't answer that last one... YIKES!

HA!

But if the answer to the other two questions is NO...

Then WHY in blue blazes would you go to someone who is not the very best at helping folks with Lyme, when you have Lyme?

You can sit there and treat Lyme till the cows come home.. but until you are PROPERLY tested and PROPERLY treated for ALL the diseases you may have gotten when originally bitten... it WON'T happen for you.

PLEASE... think of it this way.

If your child was sick... would you "settle" for someone who wasn't trained properly and who had no experience to handle his care?

NO.. you wouldn't!!!

Then why do you think YOU deserve any less than the best??

You need to get your butt to someone who knows what they are doing and stop filly fooling around with these diseases and those who are "trying" with all good intentions.. but who are NOT experienced in dealing with this stuff..

I know.. I know.. you all ready know you need to see a LLMD. Well...

NO MORE EXCUSES NOT TO GO, NOW!!!

Don't wait till it is too late.

The longer you wait to get GOOD help.. the longer you will be sick.

You said..

"I come on here..day after day...see and read about everyone being sick...no one getting better. Is this thing beatable? Seriously, just tell me like it is...am I going to make it?"

Your eyes decieve you dear one.

What YOU see when you come here are about 100 people only... out of over 4,000 members we have had here.

Then, you ask... where are the other 3,900 plus members?

They've done left us for greener pastures!

They are better now... and they don't "need" help. They don't NEED us!

Some are probably on vacation climbing the Rockies. Some are fixing supper for their 3 kids and husband.

Some are back at work full time... some are floating down the Buffalo River in Arkansas... in canoes.

What you see here now are the ones who were unable to have the benefits of a LLMD in the past... and who were "ducked" from the get go.

Or the ones who were sick for MANY years before they were diagnosed or treated and who maybe had permanent damage as a result.

Or the ones who are just so kind they have dedicated their time and effort to helping others who are now in the same shoes they were in.

Heck.. no one WANTS to be here JUST for FUN! They all have a purpose and a goal. They all need and/or provide help.

You are seeing the ones who have it bad NOW... and who are still trying to get it right so they can move on. They are contributing while they recover.. and sharing their experiences so others will know they are NOT alone.

You said..

"Tin - tell me like it is. Am I going to get better? I do want to run to the nearest LLMD...which is only 13 miles away from my doorstep. But instead I'm doing what DH is asking me to do. I'm going to see the ID next Tuesday."

I am not sure who or what "DH" is.. but I wouldn't care if DH was the President of the USA.. or the keeper of the ice cream vault.

DH would NOT get in MY way of seeing who I needed to see in order to get ME better.

DH would NOT control MY health care.

DH would not... under ANY circumstances... BEGIN to know how I feel and what I need.. and DH would NOT stop me from getting the help I deserve.

The ONE thing I do KNOW...

You MUST follow your gut instinct and do what YOU think is best for YOU... not what anyone else thinks is best for you.

If DH does not understand this concept...

Throw DH in the alligator pit and be done with it.

You said..

"The thing is also that I do still have trust in my GP. Why? He got me through my thyroid problem, he got me through when they said I was going to have a rough time getting pregnant. That's why I have so much faith in him."

I can appreciate loyality... and I greatly admire it as a true quality.

BUTT!!!!

Maybe look at it this way...

I have faith in the fact the sun will come up each morning.

However..

If we have a day where the sun isn't shining...

And another day when the sun doesn't shine...

And yet another day when the sun doesn't shine..

I'll be dipped in apple butter if you think I am going to sit back and not start looking around for a sunnier place.

It is fine and dandy to have faith and trust.. but I wouldn't expect my dentist to be able to write a good prescription for my eye glasses.

My advise..

Go to the LLMD. NOW! ASAP!

Ask them to drop a letter to your GP about your diagnosis and treatment. I would bet your GP would follow the lead and get the scripts written for you so insurance will pay their share.

If he doesn't want to co-operate...

He isn't worth tossing your life a way for... and you will find out too late to be much good.

OK..

Listen.. did you hear that noise?

It is the sound of a bowl of chocolate ice cream calling me to the kitchen.

It is saying...

"Eat me, eat me!"

Now... it took me most of the night to research this post and write a response.

When you get to the end.. please do me a favor.

Take a break.. think about it.. then come back later and re-read it.

Then post a reply letting me know YOU are taking control and YOU will get the help YOU deserve.

I care.

I don't want to see your smiling face here any longer than I have to...

I want you all better as soon as possible.

Otay?

Hope MommytoAidan will read this-I was really inspired by your words, Tincup and wanted to let you know that your encouraging words surely will motivate me to get the best care and keep positive...

Just wanted to let you know how much we newcomers appreciate all the support and to let Mommy know that I too can sympathize because I have been thinking the worst also-it really can consume you and it is a challenge trying to train your brain not to go in the direction of the worst possible scenario.

I'm from NJ too and would love to chat if you want to drop me an email and maybe we can keep eachother motivated!

Keep your chin up, Mommy-and thanks again Tincup!

I just wanted to thank you so much for your posts to me. You have no idea how much they help me. I wish I could hire you to come and live with me until this mess is over. I think having you here on this board is the best. I was literally crying and laughing at the same time while reading what you wrote. I even had people email me saying that your posts were the best.

I've been trying to deal with this for the past few days. Trying to keep my mind off of things. Yes, it has helped some.

By the way, DH is "darling husband". I post on a different board unrelated to lyme and we have our little "abbreviations" over there.

I am still going to the ID doctor tomorrow. I printed out a copy of the ILADS guidelines to take with me as well as a list as long as the mississippi river.

I also called a LLMD in Howell, NJ. The one that is close to me. She is Dr. E...I think she is a she. LOL! They were not open. Does anyone know her hours? I was shocked when they were closed.

The anxiety is still there...but not as bad. The nausea is VERY BAD...I don't eat much. Is that ok? I think I may have yeast now too. I have a terrible taste in my mouth and it's a little white. I'm going to ask about this tomorrow.

I want to thank all others that have posted to me as well. You have no idea what it means to me to read your posts.

I guess I'm going to the ID doctor tomorrow to see what she says. And for my husband, who wants me to go to see her.

I did call an LLMD near me. Dr. E in Howell, NJ...anyone heard of her? They can get me in on Thursday if I want! I didn't think I'd get in so quick!

How are you doing Cave? How long have you had LD? Are you still being treated?

I saw that- you little whipper snapper you!

Are you saying I talk too much?

Well.. I DON'T THINK SO!

And I doubt you could get ANYONE here to agree with you.

They KNOW I am quiet as a church mouse ... ALL THE TIME... and...

I NEVER carry on and babble babble babble.

Find ONE... just ONE person who agrees with you and would DARE to say I talk too much!

(Melanie dear... if you would kindly stay out of this conversation... I would REALLY appreciate it!)

Hey Cave...

AND...

Please keep the appointment with the LLMD set up too.

If you don't get what you think is right from the ID doctor... then you have a second route ready.

Many folks... after a visit to an ID duck... leave their office either in tears.. or angry as a hornet.. or both. Just be aware this could happen.

That is a good LLMD by the way. VERY good.

They may be closed because, at some offices the doctor and/or staff have Lyme and they work part time. This is not uncommon. Not saying this is true in this situation.. just a passing thought.

Looks like you are set to go to the ID duck... no matter what. Ok.. we will deal with that. Keep in mind... please...

Our fear is that you will be insulted, ridiculed, degraded, AND...

The advise will not only be NOT helpful.. but will be hurtful too.

OH GOODY!!!!!

I get to say MY favorite saying.. It has been a while!!!

"I would rather shoot myself in the foot than go to a Neurologist for Lyme disease.

I would rather shoot myself in both feet than go to an ID DUCK!"

That is one of my original old sayings.. which still stands true today.

We REALLY don't want you to get hurt.. so please just be aware that getting hurt happens ALL the time .. and the main offender is the ID DUCK.

Let us know how the appointment goes.

As for yeast.. please do address this problem. Nystatin liquid may be used to combat it... and you need a prescription to get it.

And you really need to eat. For energy.. and to help recover and get vitamins/minerals/etc.. The nausea may be from not eating enough.. and may be from the disease itself... or meds.

I hope it improves soon!!!

Let us know how you are doing and if you need anything.

OK?

Good luck tomorrow... I hope this ID duck proves us all wrong and you find one who DOES have a brain... and a heart!!

If they do... we can put them in the World Book of Records as a first!

If one day were 2,000 hours long instead of just 24 hours...

In one day I would STILL not run out of negative things to say about the run of the mill ID DUCKS!

Ah.. I cringe to think how horible they can be...

I buy the main ingredient, L-theanine, in health food stores for about $12. They cut down the anxiety enough to make me safe for public consumption. Also, add some anti-inflammatories in there.

My mother believed her ID doctor only to become so much sicker after she was CURED OF LYME!!!!
There are only about 120 LLMD'S in the United States. All other doctors could care less learning about or treating lyme more that the two week "said" cure!!!!

Get tested at MDL for Co-infections and Igenex for Wester Blot and Erlichiosis. If you REALLY want to get better and STAY better then quit wasting your time. Tell your darling husband to do some research on Lyme Disease. Let him read a few of the documented articles on lyme net.

After that DH will be rushing you to a LLMD as fast as possible. My entire family has lyme. We wasted four years with GP's and ID's only to test postive at Igenex and MDL.

What was my mother's "dementia and arthritis"............ was lyme and she has improved immensely. If we believed the numerous other doctors...she was labeled psychotic with dementia......only to get worse as time went by!!!! THANK GOD WE DID NOT ACCEPT THEIR DIAGNOSIS!!!!! She is 80 and is capable of living alone and goes shopping EVERYDAY with me!!!

My daughter's "hormonal" Rage Attacks were diagnosed as normal for a 12 year old, Growing Pains were diagnosed ..............which really were lyme joint pains, Headaches which were diagnosed by GP as allergies and stomach pains daily were attributed to FAST FOOD!!!!
ALL WERE LYME DISEASE!!!!!

Everything is improving with time. My daughter has been under treatment for two years and will need about a total of five years of treatment. That's what waiting can do...prolong your treatment!

My darling 14 year old is still sick but she has improved in so many ways. She can describe it as "Mom there are days when I feel tired and achey but the big difference is..I NOW FEEL HAPPIER!!!"

Treatment for lyme can greatly improve depression and curb the rate of teen sucides.If your teen self mutilates.suspect Bartonella. Seems CUTTING is the rage with some teens and I believe they would test positive for bartonella.

Two of my daughters school mates are CUTTERS along with eating disorders. I tried talking to their parents about lyme testing but I got looked at as having two heads.

Their poor children were admitted to mental facilities, not showing any marked improvement. I bet antibiotic treatment for Bartonella would help dramatically!!!

GET TO A LLMD PRONTO!!!! If you love your family.no $$$$$$$$$ can replace you. Eat peanut butter sandwiches for the next year if you have to but get HELP from a LLMD!!!!

Dr. E does accept medicare payment if you happen to be on that. If not...........just get treated..........health is more improtant than money$$$$$$$$$!!!

What if you hit the Lottery tomorrow..money would not bring you happiness if you are too ill to enjoy it. Health overides $$$$$$$$$!!!!

"I come on here..day after day...see and read about everyone being sick...no one getting better."
Hold on...some are getting better....your just not a) reading their posts or b) they are not posting..

This disease is really wierd. PEople are so sick they swear they will never quit here when they get better, because they know how desparate they were. ....then they get better and believe me...theres a whole heck of a lot of things that are better to do than hang around a bulletin board of sick people...

Some of "us" do that though. Am I cured? I dont know. Am I pain....NOPE!...
Am I still crippled in my back and legs? Nope
Am I able to ride my horses again? YEP...did I ever think I would three years ago?....(did I even think I would want to three years ago?) Nope.

Now, on that ID thing.

You feel bad. You want to die, you want to konw what the hell is going on....

You have a LLMD 13 miles away.

Chicky~ YOU HAVE LYME. anyone with neurolyme cant make the connection what they need to do here. So between tincup and I, we will tell you what to do to make it easy!

GO SEE THE LLMD~

Now next issue.
Anxiety~ Xanax makes you terribly sleepy and you have a very young child to deal with.
As as T. Cup so nicley put it...pick up the phone.......you know the rest.
Talk to your doctor, let them know this made you too sleepy.
My daughter found that low doses of "amytriptyline" helped with pain and anxiety. So it got both things taken care of. Since she was trying to be a student during this lyme time in her life, it was good because it didnt make her too sleepy.

People do get better. Its not a fast process.
I have been on this board for three years. Please see my "milepost" posting. It may shock you how similar we were. I will bring it to the top for you.