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  • When will I start feeling better?

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    Old 01-01-2009, 07:24 PM   #1
    xoxoxox
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    When will I start feeling better?

    Hi-
    1) Can anyone tell me how long before I should start feeling better?
    2) Is this really Lyme if there's been no improvement?

    My doctor (Infectious Disease) has had me on Ceftin for over five weeks now (orallly). Said my symptoms sound like classic Lyme even though every Lyme test I've had has come back with negative results - ELISA, PCR, Quest.
    It's the only thing that seems to fit the mystery of all the health issues.

    Here are the main symptoms I've had for at least a year or more:
    -Insomnia
    -Ringing in ears with pain, pressure
    -Light & sound sensitivity
    -Burning pain in face, back & extremities
    -Joint pain
    -Feels like my jaw is coming unhinged
    -Cognitive problems (brain fog, memory problems)
    -Fatigue

    I did have a bulls eye rash twelve years ago. My next appointment is still two weeks away and I'm just so anxious to feel better. Plus the bear is just unbearable.

    Does this sound like Lyme to all of you? What else could it be?
    I just want to be informed and pro-active.

    Thanks,
    Danni

     
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    Old 01-02-2009, 05:09 PM   #2
    kitty9309
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    Re: When will I start feeling better?

    Quote:
    Originally Posted by xoxoxox View Post
    Hi-
    1) Can anyone tell me how long before I should start feeling better?
    2) Is this really Lyme if there's been no improvement?

    My doctor (Infectious Disease) has had me on Ceftin for over five weeks now (orallly). Said my symptoms sound like classic Lyme even though every Lyme test I've had has come back with negative results - ELISA, PCR, Quest.
    It's the only thing that seems to fit the mystery of all the health issues.

    Here are the main symptoms I've had for at least a year or more:
    -Insomnia
    -Ringing in ears with pain, pressure
    -Light & sound sensitivity
    -Burning pain in face, back & extremities
    -Joint pain
    -Feels like my jaw is coming unhinged
    -Cognitive problems (brain fog, memory problems)
    -Fatigue

    I did have a bulls eye rash twelve years ago. My next appointment is still two weeks away and I'm just so anxious to feel better. Plus the bear is just unbearable.

    Does this sound like Lyme to all of you? What else could it be?
    I just want to be informed and pro-active.

    Thanks,
    Danni
    I am in the same place as you, though earlier in treatment. My bulls eye rash was 14 years ago, followed by swollen knees and vertigo that has come and gone and stayed around these last 2 1/2 years thanks to a month's worth of steroids!
    My tests are negative so far. We suspect it may be B. lonestari not borgdorferi. Waiting for PCR results of 4 strains, including lonestari.
    The bulls eye is diagnostic and you have very typical symptoms.
    Have you been tested for co-infections?
    I am so amazed that your doctor is treating w/o a positive test! Has he considered running the WB through a specialty lab?

     
    Old 01-03-2009, 07:03 AM   #3
    J0J0
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    Re: When will I start feeling better?

    Everyone is different in how long they see any improvement. It depends on each individual body. What "strains" of lyme they have. What co-infections if any they have. What other bacterias have invaded the sick body. What virus's have decided to join in the party. Then there are Protozoas, microbacteriums...all kinds of unseen critters that can be there.

    It has taken me 10 years now of antibiotics, supplements, homeopathic, and Lord knows what else to get to where I am.

    There are atleast 300 strains of Lyme. There are only certain ones they test for. This is just one reason testing for Lyme is not good.

    If you knew you had lyme 12 years ago, and were not given the proper length of time on a protocol. Then it most likely went into remission and is now coming out again.

    I would get to a Lyme Literate Medical Doctor. Majority of other doctors do not want to deal with Lyme patients. Nor do they want to give long term antibiotics. And if you go to your regular doctor they will tell you if you had been treated then it wold be gone....Not true!

    You might want to research Dr. J. Burascano Guidelines 2008 and see what and how he suggest to treat Lyme. He is one of the top researchers in Lyme.

    Lyme is nothing to shake a stick at. Sounds like you truly need a doctor that knows what they are doing.

    Look at the top of the board and look through the thread Doctors and Clinics, see if you can find a LLMD to go to. There are not many so you may have to travel. If you don't find one, then search for a Lyme Support Group in your area get ahold of the contact person and ask them. Or try posting a new thread asking for a Lyme Literate Medical Doctor in your area.

    Wish you a fast recovery.

    Jodie

     
    Old 01-03-2009, 07:17 PM   #4
    xoxoxox
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    Re: When will I start feeling better?

    Thanks Jodie & Kitty. Hope you both recover quickly.

    Saw my doctor on Friday and he said if I have not responded to the Ceftin ("the best Lyme antibiotic available") by now, it's not Lyme. Don't understand that assumption given the common symptoms and the rash.

    One doctor from before did have several tests run and the only things that came up positive were Mycoplasma pneumoniae and Candida.

    Current doctor sounds somewhat dismissive about my case since the Ceftin failed. Going to post another thread I want to find out if anyone has been unresponsive to Ceftin but had luck with some other antibiotic.

    Thanks again.
    Danni

     
    Old 01-04-2009, 07:45 AM   #5
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    Re: When will I start feeling better?

    Over the course of 10 years I have been on many many different types of antibiotics, and combinations of antibiotics. Your doctor is NOT a Lyme doctor is sounds like. Sorry I feel he is so wrong.

    ONE antibiotic is not going to kill off lyme. Especially if you have had it for a long time. Five weeks is not long enough to even put a dent into to it. There are about 3 stages to a lyme bacteria. They are a living little bacteria. You have to have a antibiotic to kill the bacteria and kill the cyst form of it.

    This is why people get and stay so sick cause of the doctors not doing their research. They may be nice doctors, but you truly need to get to a Lyme Literate Medical Doctor.

    You have had this for 12 years it is Chronic now and will take many years to get this under control. But first you need to find someone to help you get on the right protocols.

    Also yes the mycoplasma Pnumoniae can cause the same symptoms. Have you read up on this bacteria? Majority of doctors treat it with 10 days of antibiotics and say you are cured. This is not true. It goes into remission and then causes other problems such as dementia, alsheimers, m.s. Fibro, ect. All depends on your body and immune system.

    Besides Lyme I have Chlamydia Pnumoniae. I am seeing a doctor that specializes in Mycoplasma and Chlamydia Pnumoniae bacteria. He has some out of the box protocols.... And they treat the Lyme too.

    Hope you find the right doctor soon!

    Jodie

     
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