The weekend from

Discussion in 'Lyme Disease Archives' started by ajp, Jul 5, 2006.

  1. ajp

    ajp New Member

    Hi All,

    Just have to vent some. I started my Biaxin last Tuesday and by Thursday, started a strong herx...so much pain in my legs, knees, even the bottom of my feet and it just got worse.On Friday I seriously considered going to the ER, but didn't. I justed stopped taking the Biaxin. I was only on one 500 mg. at lunch.

    I called my LLMD today, of course his office is closed till next week, but I did leave a message on his answering service and they are supposed to reach him and get back to me.

    I am just so discouraged. I feel like my body has been taken over my aliens. Now I am not a wimp. I've had two children and having been quite ill for the last three years, but this was.....just unbearable pain. Like my body was surely on fire.

    My LLMD will not prescribe pain meds, which I keep forgetting to ask him why, liability maybe? Anyway my reg. doctor does. I take Vicodin. But my doctor has since closed her practice and a new doctor has taken over. Well she won't refill my meds without seeing me, which is ok, but I can't get in to see her till next Friday. I am on a waiting list in case of a cancellation.I only have enough meds for the next couple days(not that they really helped at on on Friday). I did call today and asked to just get a script for enough pills till next week...but haven't heard back yet.

    I honestly have to say, I know why people kill themselves, not that I would, but I can definitely understand how the pain could drive you to that. I think that the pain of Lyme disease is not talked about enough.

    I am feeling better some, less pain, but it is still there, which I can't understand why...when I stopped the meds.

    I am realizing what a horrible and serious disease this is. And it scares me. What is I don't get better and have to live like this forever. I just want to be better and able to function without taking all these horrible meds with all the side effects.

    Thanks for letting me go on, tomorrow is another day.
    Hope you all had a good weekend, please tell me somebody did?. Take care.

    Love Mindy
  2. victoria

    victoria New Member

    Oh Mindy, I am sorry to hear you're having so much pain... that is strange that the LLMD will not prescribe for pain medication, most will. I hope the new doc will authorize at least a few more pills, it seems like the humane thing to do.

    Doctors are supposed to take treating chronic pain or pain of any kind seriously and prescribe appropriately. But it probably isn't because of the liability issues as much as it's the gov't looking over their shoulders so much of the time. Even tho there was a bill passed on the federal level I think that mandates doctors to treat pain.

    Most people do get better with the abx, and IMHO I think it is probably the thing to start with... wonder if your LLMD would consider you also using other alternative methods?

    There is a book out about using herbal remedies for Lyme, also the rife machine. And JarJar's doctor said he could do the salt/vitamin C protocol along with the abx (JarJar- how are you doing with that??)

    This is a serious disease for many if not most, but at least you know what you have... and knowing there is a light at the end of the tunnel so to speak really helps I think. I've read about a lot of people having a difficult time at first, and my son is as well, but there have been positive signs as well.

    Wish there was something more I could suggest or do, but know you have some healing thoughts coming your way!

    Victoria

  3. minimonkey

    minimonkey New Member

    Mindy --

    You are having a pretty classic herx reaction -- I SO feel for you! The pain can be pretty unbearable, even with Vicodin, etc. to treat it. Biaxin is a strong drug, and known for causing nasty herxes.

    My personal experience is that the first herx on any given drug tends to be the worst, if that makes you feel any better.

    It generally takes a day or two, at least, for the herx to let up when you pulse abx -- the bacteria are still dying for a while.

    If your LLMD won't prescribe pain meds, will he/she at least refer you to a pain management doctor who will? LLMDs are already sticking their necks on the line by treating lyme in a lot of states, and I suspect that is why they don't want any additional chance of being harrassed.

    I hope you are better by the time you read this! Remember, most of us do get a lot better, or even completely well, with treatment.

  4. kellyann

    kellyann New Member

    Hi hon,
    I know what you mean about the knowing why people kill themselves from the chronic pain of Lyme. I know the thought has crossed my mind a time or two. Not seriously, but I sure do understand it. If it were not for my family I don't think I'd fight so hard to be here. Enough of that depressing stuff!

    The pain is horrid I know. I don't know how you can handle it with little or no pain relief. I pray you get in to that new doctor's office asap! I know I can't do anything for you, but I do know right where you are coming from. It won't last forever, I promise!

    I wasn't able to go to the parade yesterday where my 16 year old daughter marched with her school band. I missed seeing that. It was too hot, I felt like crap. I did sit down and start sewing on a new quilt I'm making, it is red, white, and blue! I love to sew!

    Take care and know that we are thinking of you and praying for you too!
    Kellyann
  5. vp

    vp New Member

    Something that helps me is epsom salts. I pour about a pound in the bathtub and soak in it at least 4 times a week. It has helped me more than anything else I've tried. Pain pills didn't even touch my pain.
  6. ajp

    ajp New Member

    Hi,

    Thanks so much to all of you for your compassion and kind words.

    I am still waiting for a call back from my LLMD's office. But I am feeling better, just taking the Ceftin, have not started back on the Biaxin and won't until I talk to the doctor.

    Since I live in Maine, my options as far as a Lyme doctor are very limited. There is only one other LLMD in the whole state, unbelievable I know. My only other option is going out of state, but you know I am thinking about doing that, maybe NH or MA.

    I do like my Lyme doctor very much, but I think he is a little conservative. I also am wondering about the dosage. I mean I am not very big and am I taking the same dosage as a 200 pound man? I don't know, have to ask.

    I am thinking about trying the herbal route. Can anyone recommend a good book or website about it?

    Again, thanks so much to all of you for you concern and your knowledge. You have helped me so much.

    Love Mindy