I'm dying here. Now of course I am questioning if I do have lyme. BUT I HAD THE BITE!!!! AND I HAVE ALL OF THE SYMPTOMS!

I made an appointmet with an LLMD, Dr. E in Jackson, NJ. But she can't get me in until September 9th. I'm going to call tomorrow to let them know to call me if something opens up. I'm at my wits end here again because of this appointment today.

Question for all of you....should I continue with the ceftin until I see the LLMD? I have TERRIBLE nausea, I think from the abx. I've lost almost 20 lbs since December and I hardly eat. I have no appetite at all! I'm REALLY SCARED. Is this going to kill me? I have terrible pressure in my jaw and head. I have twitches in my head. TINCUP, I KNOW YOU'RE GOING TO SCREAM AT ME WHEN YOU READ THIS!

Seriously, is this going to kill me?

M
 

Call the ID doctors office, and request that they send you your records in full!

This will be helpful later for two reasons.
1) You can confirm exactly what they did report, and then have your LLMD reference and contradict that.

2) If you should choose to pursue this legally after you get a difinitive diagnosis, you have something to go with.

Should you continue the medication? YES ABSOLUTELY.

you are already in a herx probably, making things more difficult. each herx gets better and better. you dont want to back peddal now.

Now. I wrote to you earlier and gave you a link of doubt (of lyme) and hope that followed my doubt. (our personal story). Please read it. Im sure you can relate. http://flash.lymenet.org/ubb/Forum1/HTML/022885.html

We love ya girl, and are here for you.

You are not crazy! (lyme may be playing a part on you though in which meds for anxiety will help)

HUGZZZZZZZZzzzzzzz
from
Been there, done that.

[This message has been edited by Lishs mom (edited 17 August 2004).]
 

I have the ceftin to take for the next four months (from my GP)...just not sure if I should continue to take it or now...I'M VERY NAUSEOUS! Could it be from the ceftin? Have myself all worked up tonight too...because of that appointment.

My heart is racing, my mind is going out of control (literally) and I just forced myself to eat something and I just took a xanax.

What should I do?
 

Thanks for your post. I just read the post about your daughter...I'm so happy to hear she is doing well. I hope that I can do that well soon.

Question -

Because I've had this for 8 months before I started treated and most people on this board have had it longer. Does that mean that I'm not worse than someone who's had it longer? I am going out of my mind with it and I haven't had it very long and no one else seems to be going crazy like me.

M
 

Some people "disseminate" quickly into the nervous system. Others have a support system which alleviates much of the "additional life stress"

It sounds like you have early dissemination, and not as much help as would be good. It is very scary to have a young family and to be as ill as you are. This in itself adds additional fears and stress. These reduce immune function and allow faster degeneration.

I wish I could say, just go get some bubble bath, and take a nice long hot bath. But...thats not something a young mom can do too often. I wish I had a better answer.

I do know the "desparate" feelings I had...and thinking I was going craZy wathing my daughter suffer and not able to do anything about it.

Hang in there. I dont have a full answer for you, all I offer is hope, and reassurance that things WILL get better.
 

Mom's have a lot more stress on top of being sick, just do the best you can.

Staying on abx is always best, but perhaps you can talk to the GP about lowering the dose for awhile. Not getting proper nutrition can't be good either.

During really bad herxs our llmd would have me back off my son's abx for 24 hours. So short breaks have to be ok.

Do take all your test results from the past year or two. I made a SHORT list of symptom onset AND the abx and doses I had taken. The llmd seemed most interested in past treatment.

You will feel better.

Mel

I am so sorry you are feeling so rotten. I WAS hoping for the best today....

Darn them IDIOT ducks...

More food for the alligator pit!!!

I am sorry you were disappointed.

But...

Tomorrow is a new day.. so let's see what we can do to make it better.

1. I would like for you to purchase an audio tape. I will come back and post links. It would be for PASSIVE muscle relaxation exercises. This will help... VERY much.

2. I would like you to contact Dr. Virginia Sherr, immediately. She can help you until ... and even after you get an appointment with the other LLMD. She is in Philly area. (Holland, PA- you can get the number through telephone 411 information)

She is VERY active in the Lyme community and KNOWS exactly what you are going through. She has helped MANY Lyme patients here at Lyme Net... as well as many others. Just tell her Tincup told you to call for an appointment.. and she will take care of you.

3. I am NOT a doctor.. but if I were you I would stop the medicine, for now. If you are this horrible.. you shouldn't be. Either you are herxing.. in which case you will need time to clear out the toxins which are adding to the problems you are having.. or the meds aren't working. I would take a break for a few days.. minimum .. and see how it goes. You can start back later once you feel better.

4. My guess is that you may have a co-infection... possibly babesiosis and/or Bartonella. (By the way.. Dr. Sherr just published a wonderful article on Babesiosis. She can help you with information on it.)

5. You MUST eat. I think the meds have you so messed up you can't. That is another reason to take a medicine break for a bit.

6. You said..

"... no one else seems to be going crazy like me."

Heck, we've already been there and back!

You have some serious catching up to do to get to our level of crazy!

The panic attacks are the worst! They can make you think you are going to die.. or go insane... while others just sit there and watch.

Or BOTH!

I had them HORRIBLE as one of the first things that hit me. I was scared out of my wits.. all the time.. for no GOOD reasons. I could NOT control them. They ran my life and I was out of control.

It was a living nightmare.

The good news is...

I just saved money by switching my car insurance.

OK.. OK...

The good news is...

They DO go away! They control you now.. but they WILL go away and you WILL feel "normal" once again.

You MUST trust me on that.

HANG IN THERE!

They WILL go away.

Ok.. let's see how well you do with all this. I know it is a lot to think about.. so don't think.. just DO IT!

Starting tomorrow morning..

No more Ceftin...

Call Dr. Sherr and make an appointment for ASAP...

Eat....

Get an audio tape and USE IT..

OK?

We are here.. and we KNOW what you are going through is difficult.

Check in tomorrow and let us know how you did on this list.

OK?

Thinking about you!!!

TC

------------------
Lyme Disease Help
http://www.wildcondor.com
 

Are you taking probiotics? You MUST take probiotics! They may help (greatly) with the nausea.
 

Have you had the Yeast problem you mentioned a few posts ago checked out? The upset stomach could be the Yeast.

I am going to my PCP tommorow because I think I have yeast. I did the spit test and I definitely have it in my mouth. I also have a rash and upset stomach. I made an appointment with the LLMD in Flemington but can not get in until the end of September so like you I am still going to my PCP.

The upset stomach could also be from the anxiety and Panic Attacks. Are you taking anything other than Xanax for your anxiety? If not you may want to try a half a xanax during the day. I find that half a xanax is enough to take the edge off but does not make me sleepy.

Does anxiety or Panic disorder run in your family? I have battled anxiety for 7 years. It runs in my family so I have alot of experience with it.

Tincup mentioned a doctor in Holland PA. Holland is near where my brother lives. I think it is only 15 minutes into PA off of I95. I will double check with him tommorow. I cannot remember where in NJ you are but it may not be too bad off a drive.

Hang in there!

I made the mistake of going to one (who was 'knowledgeable with Lyme') and had one of the worst days in my life.

I was told there was no such thing as Chronic Lyme. I was told the only true test for Lyme was a spinal tap. I was told that there was no way I had Lyme. I was told that I would be dead by now if I did have Lyme.

I was told that my symptoms were caused by:

Allergies
Sleep apnea
Rosacea
and, the absolute most common excuse, ANXIETY

I was told that I could not have Lyme because I didn't have a rash and had never been bitten by a tick. I said, how do you know that I've never had a rash or had never been bitten by a tick? YOU NEVER ASKED ME.

This ID doc had a major god complex.

He told me I was wasting his time.

I went into the waiting room and was asked by the receptionist when my next appt. was. The doctor had never said about a return visit so I answered:'I doubt I will be back'.

Next thing I knew, some nurse went back and told the doctor what I said and I was called back to the examining room where the doctor started to verbally abuse me (how dare you say things about me in from of my patients, you are wasting my patient's time because they are really sick and they really need me, you are crazy, etc, etc, etc).

I blew up and told the doctor that he was the most arrogant and ignorant doctor I had ever met and that I knew the second he walked in the room that he was not going to want to help me, much less be able to help me....

It was terrible.

I was able to get to the car before I started crying.

I just sent a letter to the Maryland Medical Board concerning this doctor.

We should be able to sue these kind of doctors.
 

If it has been 8 months since starting treatment it does not mean you are any better or worse. It depends on so many differant things.

What strain of Lyme you have, how old you are, your other illnesses, other tick borne illnesses...your genetics & immune system.

Thank God for this website and all the kind souls who are there to support us or I think I'd be crazy by now!

I know you said you have a LLMD nearby, but if you need another name, I use one in the Flemington area who is very good.

Please keep us posted and know that you are not alone in the way you're feeling-if you need to chat or want the LLMD please just drop me an email.

K
 

My symptoms sound very similar to yours-pressure in my head terrible jaw problems, major fatigue...the whole thing. I started on Amox. and Biaxin XL and shortly after starting had horrible nausea and no appetite at all-it's really a scary feeling. Stopped the Biaxin and now taking Amox. but it did stop the jaw pain (of course other symptoms are cropping up but that annoying jaw "stuff" is gone!) I would definitely see if there's an antibiotic that might not give you such terrible side effects because you really need your energy right now.

Keep us posted!
 

Thanks for your posts. Yeah, the no=appetite is really killing me! I feel awful! I have terrible anxiety too. My joints aren't as bad as they were before I started treatment so now I feel like the anxiety is just so bad that I can't take it. Do you have that? I am calling my GP tomorrow, until I go to see the LLMD. Should I ask him for a different abx? I fee like I am ALWAYS worked up and can't relax!

Help!

MTA
 

I know you feel desperate.. but take a step back and re-group for a moment and THINK ahead.

You are at a bad spot in the road.

You have no doctor to advise you (at the moment) on the right way to handle possible Lyme and tick borne infections.

You have severe anxiety... and joint pain as your main symptoms.

Those symptoms won't kill you.

Many people live for years with those conditions.

The BIG problem here.. right in front of your face...

You can't eat..

That is something that is VITAL for survival. You need to address that situation FIRST.

You need to control the nausea. If the meds may be causing it.. you need to stop the meds so you can eat.

First things first.

AND... remember these things.

1. You MAY need to be totally off antibiotics for a month to take the Lyme tests. Some doctors require this to be done... we see it all the time.

So starting a new antibiotic now... or staying on the other one may be worse for you in that regard and may delay your progress.

2. Continuing to take the one you are on makes it hard for the new doc to assess your ACTUAL symptoms...

How is she to know what is from the meds.. and what is from the disease? You will complicate matters and throw in additional problems by confusing the situation for her.

3. Taking antibiotics now may interfer totally with everything... and if she agrees with me... she will make you go off them to clear you up FIRST... and then check you over again before making any decissions.. so you would be wasting time going there NOW.. then having to wait a month.. and THEN getting started on whatever it is she wants you to start on.

4. Self medicating is not a grand idea. Trying to pick and chose an antibiotic out of the blue is hard enough for the ones with years of experience... much less someone who knows basically nothing about what they HAVE and what to do about it. It takes YEARS of studying and experience to be able to PROPERLY address Lyme and tick borne diseases... and then it is often a crap shoot.

Now.. not to be picking on you.. but did ANYTHING we say in the previous posts sink in?

If you want advise... try to slow down and consider what we are saying. Read.. and re-read the past replies that folks posted.

Otherwise.. basically, we are wasting our time and yours by responding.

You really need to stop bouncing off the walls and make a plan.. a simple plan. A plan for the vital things to be addressed first, which is something you CAN do..

YOU know that it wouldn't make sense to waste time putting a bandaid on a person's finger because they got a paper cut in the middle of a severe diabetic reaction.

You would address the sugar problem FIRST... and then consider the other problems.

It's called "triage".

I know you are miserable.. I know you are extreamly anxious... but try to slow down and think.

It is less than 3 weeks till your appointment.

Perhaps try to focus on getting the nausea controlled and the anxiety levels down a bit so you will be able to focus on the other problems when you see the doctor.

May I suggest you go back and reread the replies...

I hope today is better for you.

I would even call the office periodically and ask about cancellations.

As to what to do in the meantime about your anxiety is tough. I've been through Lyme-induced anxiety myself and can tell you it sucks. BIG time! If it wasn't for Dr. E I don't know where I'd be.

Have you tried running a search in this forum using the word anxiety as a search term? Or using anxiety and magnesium for search terms? There is a LOT of good information right here that can help you right now.

Personally, if I were going through the anxiety thing again, I would be taking magnesium supplements. But read up on them here FIRST before you go out to the store to buy some, OK?

If you like diet soda and coffee and drink them on a regular basis, stop the diet soda and switch to herbal tea. Like....today. Diet sodas contain an ingredient called aspartame that can cause all sorts of problems, among them anxiety. Caffeine, as you may already know, can also cause anxiety. Forget decaf coffee, it still has some caffeine in it albeit just a real small percentage. If you're going through anxiety issues you don't want ANYTHING aggravating it.

Xanax is good for short term but it only takes care of your immediate symptoms and not their underlying cause.

You're done with that ID duck. Just put all the BS that b**** put you through behind you. You're gonna get through this. I know you will.

Linda
 

Sorry you are so disappointted but you are not alone. I got the same trip as everyone else. My id doc, said abx worked because of placebo effect.

I was not surprised, cause by the time I seen her, I had seen many doctors and suffered much abuse from all of them.

It was like the ID doc was reading from a scrip, she said the same thing they all say, word for word. "I didn't see your rash". "lyme testing is very reliable" ", she didn't know the full extent of my neuro symptoms and said "you would have more neuro symptoms, you need a rheumatologist, you have autoimmmune disease.

You don't have bartonella, cause I tested for it, and I asked about babs and erhil, and she refused to test, and asked me if I drink cause of blotchy skin.

I heard all these things from other people, that's why I didn't go see an ID doc for many months. We don't have lyme doctors where I live, and I don't have the money to go see one. We only have one in canada that i know of.

Hope you are feeling better soon. I have a three year old, so I know how hard it is to be strong for the family when you feel like falling apart.

Ginger tea, MIGHT help the nausea, just a suggestion.

Take Care
Lymiecanuck

[This message has been edited by lymiecanuck (edited 19 August 2004).]