My Lyme appt today

Discussion in 'Fibromyalgia Main Forum' started by Applyn59, Jul 22, 2003.

  1. Applyn59

    Applyn59 New Member

    Hi,

    I saw the lyme dr today and he gave me
    lots of info and tons and tons of tests to take.
    He is ordering every test we all want including
    clotting, mycoplasmas, tick borne illnesses
    and hepatits, heart tests, etc.

    I gave him a ton of medical records and
    he told me that I have been through hell
    the past 10 years and he sounds like
    he thinks I have chronic neuro lyme.
    He also thinks I could very well have
    hepatitis.

    He said he thinks the 250 zith zpak I
    was on for the toenail infection was causing me to herx. I was having so much tingling and numbness
    and he said that little amount could
    certainly do it.

    I am scared though because he told
    me I have very bad neurological eye
    problems in both eyes. I just saw the
    eye dr. last week and I asked him why
    he didn't know. He said because the eye
    dr. was most likely not looking at my eyes
    through the perspective of neurological
    eye problems.

    He is worried about my rapid heartbeat,
    kidneys, and eyes. I am confused though
    because he said I should get a brain
    MRI and a neck MRI but he did not order
    them or refer me to anyone. I don't know
    if I am supposed to take it upon myself
    or it will be discussed at a future date.

    He also said I have a tremor when I speak. He does not like my thyroid
    tests even though they are in the
    normal range.

    He asked me if I wanted to start antibiotics today and I said no. I need time to absorb all of this info and I need to get my mother better. She is EXTREMELy better
    than she was and likes talking on the phone now
    and going to the hot tub. I think I am going to
    need the psych more than she does at this point.
    My mother is extremely anxious and I need to get her fixed before I start
    this horrid road.

    He said I could do all the blood work
    today if I wanted to but he asked if my
    symptoms worsen prior to my period.
    He said it would be better to take the
    tests the week before my period. So
    we decided I should wait if I could
    stand it. I figure if I have come this
    far I might as well do the tests when
    he thinks it's best to do them.

    The appt was very relaxing and he was so
    easy going and we just blabbed away
    and the time flew.

    He also said that my neck and back
    mri's should not be giving me all the
    pain and tingling and numbness that
    I get. I guess he thinks it is lyme
    or hepatitis related.

    He seems so very smart and I told him
    I was so happy I no longer had to be the
    brains of the outfit. He chuckled at that
    comment. I really like him and feel
    like this was definitely the right move.
    I am just concerned about herxing and
    also wondering about all he told me.
    .

    I can't believe I got up at 630 and made
    the long trip. This is the first time in
    years that I feel I can totally trust the
    dr. to do the right thing.

    He looked sad when he was talking about my health problems, etc. He sounds like he actually cares!
    I have drs I have seen for years who do not care!!!
    He looked up all the codes for insurance and did everything carefully so insurance would cover all testing. He said if the hospital has a problem to call him. I have blood kits for the best labs for lyme
    and tons of other tests as well.

    I feel like I have been through the mill today.
    He spent one and 1/2 hours with me and the time
    flew by.

    It was definitely a step in the right direction but I would
    be lying if I did not say that I was petrified of the road
    ahead. People who are on antibiotics for these
    problems are having terrible herxes and it scares me
    to death.

    Lynn
  2. zggygirl

    zggygirl New Member

    Hi,
    I was wondering when your were going, & how it went.Thanks for posting.
    Whew, sounds like it was information overload.
    He does sound like a fantastic doctor.
    I don't know enough about the anti-biotics and herxing to comment on them.
    I can imagine you are feeling overwhelmed!
    I hope you won't worry too much. You just need some time to put it all into perspective. This could give you some answers and help that you've been looking for, for so long.
    You did a lot today. Good for you! Now go use the hot tub or do something else nice for yourself :)
    Take Care,
    Ziggy
  3. Applyn59

    Applyn59 New Member

    Thanks. I am physically and emotionally spent!
    The dr. was excellent though but I am worried and
    need to destress.

    My mother's anxiety is much better, thank god!
    We both went in the hot tub this afternoon.
    I felt really sick though. Extremely nauseated
    and my eyes and head feel weird.

    My neck is killing me from the ride.
    I need a break from all of this stuff for now.
    Lynn
  4. tansy

    tansy New Member

    It must have been such a relief to see someone who has picked up on all your problems, that should mean a more holistic treatment protocol.

    It probably feels very daunting now especialy since you're exhausted from the travelling as well. But I feel sure that you will will feel less so once you've recouped a bit because his findings will start you on the road back to better health.

    So pleased to hear your mother is less anxious now, that will help both of you.

    Take care and rest well after your challenging day.

    Love

    Tansy
    [This Message was Edited on 07/22/2003]
  5. Jen F

    Jen F New Member

    being thorough.

    One step at a time, Lynn.

    At least your mom is starting to do a bit better. Looks like there is a light at the end of the tunnel?

    Hope you are getting some decent rest.

    Jen
  6. Applyn59

    Applyn59 New Member

    This dr. was wonderful and I urge anyone who
    has never been tested for lyme disease to seek
    out a lyme specialist. The regular drs. don't
    know about this stuff and are really clueless.
    The lyme docs are so thorough and test everything
    we want tested.

    Jen, this dr. told me that my problems with tingling
    and numbness and pain from back and neck
    seem excessive for what is wrong with my neck
    and back. I have to discuss this with my chiropractor.
    Lyme disease mimics many other diseases.
    He also said that hepatitis can manifest itself
    with muscle pain and cause a misdiagnosis
    of FMS. I did not know this.

    I am so relieved my mother is doing better. I gave
    her 1/2 a Phenergan last week and it has been
    helping her to grab some more hours of sleep.
    That coupled with being off the Paxil withdrawal
    are making her better. In fact, we are worried
    the pscyh won't think anything is wrong with her!!!

    Hope your withdrawal stuff is getting better.

    My brother was in Germany and England last
    week but got home last night. I called him today
    to update on my appt and my mother and he
    is going to come to my next lyme appt with me
    so he can help me remember and he can also
    understand what is going on.


    I am very fortunate that I have an uncle who loves and cares so much about me and my mother and is willing to drive me anywhere I need to go. He likes to drive
    and he gets so mad at me when I thank him for
    taking me places. He took a day off from work
    to take me and we were gone from 7:30 until
    1 pm. I think I am most likely going to be referred
    to a cardiologist and neurologist and kidney dr.
    and he said not to worry and he will take me anywhere.
    My brother is also willing to fly here or drive when
    he is closer and take me and go with me, etc. He is very busy though and my uncle doesn't mind taking me.
    If I feel that I need support and advice and am worried,
    my brother can go with me to appts. Otherwise, I am
    okay with my uncle.

    What a day!!!!!!! I need some sleep!
    Lynn

  7. Applyn59

    Applyn59 New Member

    up for tansy and jen
  8. tansy

    tansy New Member

    Well now you have transport and referrals to get things checked out. Must feel very strange to have gone from almost one extreme to the other in such a short period of time.

    But things are definitely looking on the up.

    Here in the UK we have a few thorough doctors who treat holistically and are very expensive. A small number of other holistic doctors who look at some aspects of these DDs and for whom most of us have to pay. Then virtually nothing on the NHS due to insufficient resources and medical politics.

    I'm still struggling with the latter because my supportive GP has had her hands tied and is nervous of any intervention due to blunders in the past that made me very ill.

    Hence all my questions on the board, gratitude when people like yourself pass on info when they feel it might be relevant, and having to get my brain around all the new research that's now necessary.

    Could do with winning the lottery to fund all that's necessary!

    So it's fingers crossed now that thanks to this lyme doctor you get some answers and a new more effective treatment protocol.

    Your mother seems to be over the worst of her withdrawal symptoms too, what a relief for both of you.

    Love

    Tansy
    [This Message was Edited on 07/23/2003]
  9. sofy

    sofy New Member

    If nothing else at least someone listened and validated your suffering. I went to the doctor today too and will be boosting my thyroid to see if that helps. Good luck to both of us

    Nest month I am going to see a hypnotic intuitive healer. She says she should be able to help me in about 3 seccions if she can help at all. Ive tried everything else so why not this. She has a pretty good following and track record with ms patients getting back to work and all. I am ever hopeful. Im exhausted from the dr visit, gotta go.
  10. Applyn59

    Applyn59 New Member

    Tansy, it feels very strange. I went from nine months
    in bed to starting to go in the hot tub. I then was worried about hepatitis because of the needle stick in 81. I did research and this wonderful woman told me to see a lyme dr. Once I felt a little better, I followed up with my
    endocrinologist because I had been too sick to go all year. Made the lyme appt. However, falling into that
    hot tub is making everything so complicated. My
    eye symptoms came on after the fall but don't
    know if it's a coincidence or not. The losing eye
    vision thing may be related to lyme as well I believe.
    He is concerned about Hep because of my needle
    stick. He is also testing me for aids but said I would
    be dead by now if I had that. That is what I always
    thought as well.

    He gave me handouts about taking anitbiotics and
    when to take acidophilus, etc. Not sure whether I am
    having IV antibiotics or oral. I guess he will start with
    oral. He said he wasn't going to lie and that the
    herxes can be brutal. That is what I am most afraid
    of. My eyes are driving me crazy and so is my head.

    My rash came back, too! I am wondering if that is tied into the herx.

    I am on brain overload with all he told me and all
    he gave me to read. He was just so great and
    efficient as well.

    WHen I have time and energy, I will try to tell you
    the tests and labs.

    I am not sure if I can give his name in public but
    email me if you want the info. He went to
    Yale and is a surgeon and internist able to practice
    in both CT and NY.

    I am going to the GP tomorrow to recheck my toenail
    infection and also this rash. It is going to be my last
    visit because I decided to go to my former nurse
    practitioner who cares. I need caring healthcare
    people in my life, not drs who look at me strangely
    and give no response when I say my vision changed,
    dimmed and I have new floaters. This dr. didn't
    say a word when I told her that. Nothing! I was
    so scared and she was so uncaring. WHo knows,
    maybe tomorrow she will be better. I was an emergency visit last time because of the infection.
    However, I had just fallen and asked her to check
    me. She did and said nothing. I am worried
    about the stool tests because I haven't done them
    yet. I am going to tell her the truth which is I wasn't
    able to do them due to my mother's health problems
    and my bowel movement schedule is not in line
    with the hospital hours. I am wondering if I should
    tell her about Great Smokie labs. My chiro
    told me I can use his name and tell her about them.
    I have nothing to lose I guess.

    I am so tired of dr appts already! My head is spinning
    and my body is so overwhelmed by all of this
    activity.

    Lynn