ok, this is new......

Discussion in 'Lyme Disease Archives' started by kking0412, Jan 10, 2008.

  1. kking0412

    kking0412 New Member

    I know it's been awile so hi, lyme people! and to the fibro lyme bunch as well.
    good news, SSD hearing went well, we're waiting to hear
    also, spoke to Dr Brewer's office and am next on appt list!
    which is good, because here comes the questions....new symptoms: balance problems, have had to start using cane when out in case there is nothing to grab onto. Dr Simon (pain mgmnt) did a couple simple tests and thinks this is lyme related.
    also new: muscle spasms/twitches; suddden sharp stabbing pains, anywhere seems to be fair game, no one specific place. and most recently, the shakes, strong and visable. I think I unnerved my son yesterday. we'd gone over to my parents to show them something (proud parent, son under duress) and I was shaking so badly it was hard to keep the car on the road. NOT fun.
    anyone share these fun things?
  2. mollystwin

    mollystwin New Member

    Hi there! I hope your SSD continues to go well.

    As far as your symptoms go, I do have balance problems, muscle spasms and twitches, and stabbing pains. I occasionaly have shakes, but not as bad as you describe. They could all be lyme related, but make sure you tell the dr. when you go.

    Take care.
  3. victoria

    victoria New Member

    Sorry you're having to endure these symptoms - are you currently herxing?

    Is your disability being based on chronic Lyme (alone or included) or other diagnoses?

    ...just wondering, as my son is still awaiting a SS hearing. From what I've read 'chronic/late stage lyme' doesn't seem to be a dx SS recognizes, altho they recognize lyme related arthritis (makes no sense, as usual). Altho this may differ region to region - being in the SE where it's not really recognized like upper Midwest or NE, I've a feeling it will be harder to get it. That plus his youth.

    Hope those problems start to resolve soon!

    All the best,
    Victoria

  4. kking0412

    kking0412 New Member

    the SSD is based primarily on fybro, with added fun of CFS, chronic lyme and EBV. the vocational gal, bless her, basically said I was not fit to work. right now beautiful words were never spoken. will keep y'all in the loop and good luck to your son! actually, the lyme was the one thing the judge kinda questioned. I was lucky, I had seen my pain mnmgt dr the day before and he did a couple simple tests for the balance thing and said he thought it was lyme related. the judge asked for his report on that =) which if he sends what he dictated, will be very helpful!

    shakes: I was right about the effect on the fibro tainted muscles, was down all day yesterday, pain I'd say at a solid 7 even with meds. better today but it took 2 hydrocodone to be able to shower. worth it, I was disgusting!
    [This Message was Edited on 01/11/2008]
  5. kking0412

    kking0412 New Member

    what does this mean?
  6. victoria

    victoria New Member

    Herx·hei·mer's reaction (hûrkshmrz, hrks-)
    n.An inflammatory reaction in tissues infected by spirochetes, as in syphilis or Lyme's disease, induced in certain cases by treatment with salvarsan, mercury, or antibiotics. Also called Jarisch-Herxheimer reaction.

    The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

    (Hey everybody, notice the official definition in the medical dictionary now includes mention of LYME spirochetes.)

    KKing - a herx reaction means your symptoms are all made worse by antibiotics as toxins are released as the spirochetes die... so yes, it means you will feel worse before feeling better.

    If you never experience herxing, you are not killing spirochetes. Have you started on any abx yet?

    Some of this can be helped/mitigated a bit with detox methods, look for the post on this page about it.

    all the best,
    Victoria
  7. kking0412

    kking0412 New Member

    no, not at this time. I am not sure what Brewer will want o do and am pratying the disability and medicare comes thru before I see him. he's into iv antibiotics now and drug layerung, tried the second, cannot afford the first at the moment. we shall see. the deep muscles spasms etc seem to be here, period.
    however (stupid stupid stupid) I did go thru an accidental detox this past week ~ I was foggy enough I thought I'd called my scrip in, hadn't, forgot again, finally called it in and even tho the bottle said one refill left that was wrong so we had to wait for the dr. meanwhile I am having hot/cold spells, shakes, headaches, ocular migraines, nausea, loss of appetite (yay! think I lost a size)and stuff like that. dawned on me yesterday I was going thru withdrawal, Klonapin no less. it'd be @ 10 days. got the scrip, took 1/2, felt better, took a whole at bedtime and another half this am and then felt up to Provigal and some cleaning today =)I wish all this stuff was as easy to fix. watch the klonapin/clonazepam tho it was a miserable week and I know I was not completely in my right mind. whatever THAT is!