Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Jan 25, 2006.

  1. HppeandMe

    HppeandMe New Member

    Hi friends-

    I am having a very scary day! You guys are the only ones I really have to turn to. I could not find anything I was looking for today. I am still working and haven't applied for disability yet. My husband wants me to work 2 more months to see if the IV treatment for Lyme works. I told him I would try. Although I do believe I also have CFIDs and I don't know how much better I will be even if the Lyme treatment works.

    I have been on Levaquin for about a month now and I was on Doxycycline for about 5 days. The doctor took me off of it yesterday because she will be giving me the IV (if the insurance covers it).

    Let me get back to today. First of all I didn't have much sleep last night as I was in so much pain. I haven't had that much pain in over a year. Today I could hardly drive. I ran into a curb, I was out of the lines and was not able to judge distance. A client called and I talked to him like I was a child or uneducated. I sound strange. My memory is awful today. I don't know what I am doing or what I am looking for. I am afraid to call anybody in fear of what I will sound like. I took my regular dexedrine today for energy and I am dozing off at the computer. I am running into things. The worst though is I feel like I have dementia and I can't speak right. I am also on my period which usually makes symptoms worse but I have never had anything like this. Could I be herxing? If so what would I be herxing from? Like I said I have been on the Levaquin for a whole month and was only on the Doxy for 5 days. I have never done so before and don't know what it is like. I hope so because I can't go on like this at all. I just want to scream and cry!!

    Does anybody know what is happening to me? I am to scared to call my LLMD because they charge so much money and I have to pay upfront and wait for insurance reimbursement.You know how long that takes and how you have to fight for your money. That's another story. I was just there yesterday and had to pay $300 and was nothing like this. Please help if you can.

    I always appreciate it!
  2. kgangel

    kgangel New Member

    Hi Hun,

    I wish there was something I could do for you, but I personally would go to a doctor or at least call and ask if there could be a relation to what is going on with you and any of the meds you are taking or what else could be happening to you. I don'tknow anything about Lyme disease, but I know that I have trouble finding words and sometimes with driving and banging into walls, but not to the extent you are.

    I hope you will call I am worried you will get hurt

    Take Care
  3. Dee50

    Dee50 New Member

    Please slow down I think you are doing to much and your body can not keep up. Your body is trying to get your attention so you will listen to it.

    Moving to fast is a very bad thing (doing to much at one time) Please remember that you did not get sick overnight and you are not going to get well overnight. I know that you have spent lots of money to get well but it takes time and is a slow slow healing deal.

    I'm very worried about you. I feel that FFC moves to fast for many people that are ill. The last thing you want is to make things worse.
    Please be careful.
  4. Kinsie

    Kinsie New Member

    I'm not knowledgable about Lyme disease, but I've had kind of a scary time this morning too.

    I've had a severe headache since yesterday afternoon. No medicine will touch it ( I usually don't have headaches anymore since I'm on certain medications).

    Anyway, I drove thru the Chic-fil-A window this morning to get a little breakfast. I ordered a bisquit and a cup of coffee. I paid the guy at the window, he handed me a sack, and I just drove off. I didn't even wait for my coffee. I felt like a total idiot.

    Then, I went home today for lunch. I opened a kitchen drawer where we keep some scrap paper to write note on, wrote a note and went to my car to go back to work. I couldn't find my keys. I looked everywhere. I started to panic that I wasn't going to be able to get back to work for a 1:00 appointment I had with a client.

    My mind didn't click on the fact that the last place I was before going outside was looking in the kitchen drawer. Then, after my heart was racing, my poor tired mind remembered the drawer, and there were my keys.

    These 2 things both happened just this morning. It would just be funny to most people, but to me it's scary. I can't sleep much anymore, and I think it's taking a toll on me.

    I know just exactly what you mean by not talking right on the phone. There are some days, that I sould like it's my first day at work when I've been here 21 years!! Kind of embarrassing.

    So, don't feel like you're alone. Now, what to do about it.....I wish I knew.

    Let me know how things turn out.


    [This Message was Edited on 01/25/2006]
  5. lovethesun

    lovethesun New Member

    also the fact that you are trying to work for 2 months.Tell your doctor so it will be on record.That way if you file for disability it will give you some clout.Linda
  6. minimonkey

    minimonkey New Member

    Yikes! I'm so sorry you are going through this!

    Honestly, I've had days just like that-- thankfully not too many. I know that when I am in terrible pain and am also sleep deprived, I can't think straight -- my depth perception also gets weird (I have migraines.) It is terrifying to feel so disoriented and helpless.

    I say go home sick, at the very least -- and see if you can get someone to drive you! I don't have any other real advice, sadly -- but it does seem logical that it could be a herx or another reaction to the treatment.
  7. HppeandMe

    HppeandMe New Member

    Thank you guys for the support. I really needed it. I ended up going out to the receptionist area where I work and someone asked me how I was doing and I burst out in to tears. Some of the other Realtors were out there and some know I am ill. I hope they don't use this against me when we go on listing appointments. I guess it really doesn't matter though because I will most likely be on disability in 2 months. I guess I should be positive and say the medicine is going to work but I am not feeling to positive today.

    I do feel supported by you all though. This is such a great site with wonderful people. Too bad we don't all live in the same place we could all support each other and have lunch and do things on good days ;-)
  8. hopeful4

    hopeful4 New Member

    I hate to be the one to break the news to you, you are only human. Superwoman you are not.

    You have said yourself that:

    **you can't sleep
    **you are in more pain than you've been in a year
    **you cannot drive without running into a curb and can't judge distance
    **you have memory problems
    **cognitive problems
    **feel like you have dementia
    **difficulty speaking coherently
    **cannot stay awake during the day

    I just wanted to play that all back to you. No wonder you're experiencing all of this, what's happening to you is that have a serious, chronic illness: Lyme Disease, and CFIDS as well. The lyme is causing you to have many neurologial problems.

    It's not easy to accept. It's not easy to take a look at what one used to be able to do, and say, I really just can't do that right now.

    I'm guessing here...do you "look good" like so many of us? If you "look good", then others may not realize the full extent of your illness.

    I'm not familiar with the Levaquin. If you think you are having any problems with your meds, you should call your doctor. If you want to get information about medications you can also call your pharmacist, they can be very helpful.

    Doxy: I believe that some people do herx right away.

    Dexadrine: How long have you been on this, and what dosage? Is it RX, or are you self-medicating with it? I think that it is not good for you. It can tax your already taxed system. It can also make you feel a bit more "bonky" than usual.

    Disability: Are you applying through a work program? Are you applying for SSD?

    SSD takes months to years to get. So if you're talking about this, the sooner you apply the better for you.

    I'm so sorry that you are going through all of this. I hope that you will take a step back, and take care of yourself. Just for today, rest and renew. Remember, you're only human. Be good to yourself.

    ((((Hugs ))))