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    Old 09-19-2005, 03:09 PM   #1
    tick tack toe
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    Neuroligist at BRI Bristol

    i had my appointment today, i was worried but hopefull.
    my broken leg and my vertigo had me laid up for 10 days.

    i was eating at 6pm when my son came home and i have had to make aminities down stairs.

    my day had come some answers or a door way forward.

    After entering his room I had got no further than 3 sentences, i mean he wanted me! to explain why i was there! any one who rapid cycles will tell you , you can not explain how you feel.

    My appointment was due to my falling over./ Vertigo

    The word depression was spoken.
    and!
    The cloud of resignation that evolved above his head was like thunderstorm.

    My file was closed as he raised from his seat.
    He said quietly as he passed me towards the door.
    " i will examine you, but i am not! the sort of doctor you! need"

    He did not view my list of symptoms or the letter i had prepared incase of brain fog. His best interest was most certainly not my health.

    He returned to the room and advised he has ordered a gge test for brain waves.

    Naturally he has to be seen to of made some action, to the cause.
    This brings me to wonder why the waiting lists for these tests are so long.

    He closed my file again with a distaste in his mouth i was sure.
    "I have now written you off." he said proudly.

    and I suggest you go and see your phyciatrist in the future.
    "oh and by the way you won't get that test for about 2 months"
    His enjoyment of this sentence was not hidden atall.

    I was promised by A&E after 6 attacks that my vertigo would be addressed at this appointment. The Stemitil tablets given for teh Vertigo were enough to last untill this appointment.

    So here i am just left

    There will be a letter going out to the main Neurologist and My local MP

    I am going private to get the help i need, and if necessary it is necessary to follow up any of my symptoms, i will be seeing a solicitor.

    This has to be stopped, People with Mental Health can be ill.
    Because people have Mental Health issues it does not mean they are second class citizens.

    I am hurt and very upset, so sorry for the long message.
    I have posted my symptoms below if you wish to view.

    NOTE: these were not even looked at by the Neurologist.
    off to have a cry.
    Jules


    HEADACHE
    NECK STIFF
    NECK PULL treated by doctor
    BACK ACHE
    KNEE ACHE
    STICKING HIP
    LEG STIFF AND CRAMPS
    SIATIC NERVE possibly???

    JAW MUSCLE PROBLEM diagnosed The glen 20004 osed at The Glen
    PAIN IN LARYNX RAW, SEVER PAIN, CLOSURE ON BREATHING.
    TOUNGE CRAMPED AT BASE, PAIN BEHIND EARS
    COUGH ON FOOD AND SPITTLE WHEN THE 2 ABOVE ARE BAD

    FLUCTUATING HEARING, THROBBING, PAINS CRAMP, P (WORSE ON STANDING)
    PULSATING THAT CONTINUES SHOULDERS , THROAT, CHIN, CHEEKS, NOSE.

    FACE FEELS LIKE A LEAD WIEGHT CHEECKS, CHIN, BOTTOM LIP, FEELS LIKE I HAVE NO CONTROL.
    BOILS ON CHIN FACE AND REAR TOP OF LEGS
    SKIN RASH ( POSSIBLY ECZEMA) ON CHEST AND LEG
    CHAPS AND BOILS ON GROIN

    VAGINAL BACTERIA VAGINOSIS, REOCCURING..
    THRUSH REOCURRING AND SEVERE ON ANTI BIOTICS

    IN SPEECH = SLURRING, WORD REPLACEMENT, AWJWARDNESS. WKWARDNESS CONSENTRATION LOSS
    IN VIEWING = WATCHING FILM MEMORY LOSS OF THE MOVIE.
    SIGHT = VISION DUPLICATES ON CHANGE OF VISION, 1 PICTURE ON TOP OF ANOTHER
    SIGHT = THINGS MOVING IN THE CORNER OF EYE MOSTLY LEFT
    WRITTING = ILLEGIBALE CANT CONTINUE IN MOTION.EXCITABLE FEELING DOWN ARM
    HEARING = EARS FLUXTUATE, SOMETIMES IM NEAR DEAF, SOMETIMES TO LOUD, WHEN STAND I HAVE REPEATATIVE PULSATING.


    HEART FLUTTERS AND PULPATAIONS
    PINS AND KNEEDLES IN FINGERS AND ELBOWS
    BREATHING PROBLEMS = TUBES CRAMP AND RAW WITH MUCH CAHATARE
    SWEATS WITH NO TEMPERATURE

    FUNGUS INFECTION IN NAVEL AND NOSE, REOCCURING


    ALL THE ABOVE COME AND GO THE BELOW PROBLEMS STAY.

    PULSATING WITH IN MY BACK, IN A V SHAPE FROM THE SHOULDERS DOWN TO A POINT
    (RESULTS IN MY FEELINGL IKE MY BACK BONE HAS BEEN REMOVED)
    CONTINUOSE DIZZINESS.
    BOWL PROBLEMS , NEVER NORMAL, DIAHORIEA OR CONSTAPATED.
    BACK PAIN.
    CRAWLING SKIN.
    TOTAL EXHAUSTION, BREATHLESS , FATIQUE

    MOST FRIGHTENING TO DATE
    HEART STOPPED FOR A LONG TIME, LONG ENOUGH FOR ME TO KNOW I COULD HEAR NOTHING. 6 TO 8 SECONDS
    CHEST AND THROAT SO TIGHT I COULD NOT BREATH.

    THE FACT THAT IM 38 AND MY LIFE IS NON EXISTANT

    Thanks for reading as its taken me weeks to gather this information and no one is interested.
    if you see anything that leads me in a different direction i am open to suggestions always!

    Happy days to you all
    Jules

    Last edited by tick tack toe; 09-19-2005 at 03:48 PM.

     
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    Old 09-19-2005, 03:58 PM   #2
    deejavu
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    Re: Neuroligist at BRI Bristol

    Hi Jules,

    I am so very sorry for the day you had. I can feel your pain and my heart goes out to you. Sadly, there are many doctors in the U.S. that also treat patients the same way as your doctor treated you in the U.K. This is very common and at the same time, so unfortunate for many sick people no matter where they live.

    Your symptoms sound like Babesiosis to me with Lyme combined. I am still hoping that Ticker will come on soon and give you the name of the Lyme Literate MD (LLMD) in Germany as you need to be seen by a doctor who not only understands this illness, but who can start treating you immediately.

    I believe you said that you could travel to Germany and that it would take you about 2 hours.

    I wish I could give you more advice right now and all I can say is to please think positive (I know that is difficult most of the time), and that you will get the help you need.

    Please keep posting and talk about your feelings, that helps so much!

    Warmest,
    Denise

     
    Old 09-19-2005, 04:49 PM   #3
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    Re: Neuroligist at BRI Bristol

    Jules: I'm so sorry to hear of your debilitating symptoms and your frustration and high stress level, added to by a non-sympathetic doctor.

    Have you been on the basic things like refrigerated Acidophilus (for the bowels and vaginal infections), Vit. C extended dose, Vit. B 100 for the pain, detox baths, Magnesium? These are all easy to get OTC and until you get on to antibiotics, may help you a little bit....I've had Lyme for many years, with continuing brain damage, and these are helping me some, along with antibiotics.


    Until you get to an LLMD, maybe trying to break all the symptoms down into a more manageable group may help. I hope you do find an LLMD soon - it's really the only help!

     
    Old 09-19-2005, 05:22 PM   #4
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    Thank you all so much, its left me questioning myself and it annoys me as that what these people do..

    but i have already got my letter written, its going to teh head neurologist, my mp and if necessary if my private trip brings a result.

    then i will also be sending it to my solicitor.

    I have never been ashamed of my depression and have managed it i think 38 years.
    he is teh first person i have meet who has managed to actually hang me out to dry for it.

    I have to report him, he could be doing untold damage to mental ill patience.

    im questioning am i stressed , ill , depressed, and looking for an answer.
    Im so confussed now.

    But im sure depression doesnt make you feel this bad.
    I was so removed yesterday i didnt feel the chair i was sat on.
    My brain fog is massing.
    My writting with pen = i keep putting the second letter first, so twisted.

    oh mateys im lost, my phyciatrist says its all phyciatry, and now so does teh neurologist.
    thanks mateys xxxxxxxxxxxxxxxxxxxx

     
    Old 09-19-2005, 05:31 PM   #5
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    Quote:
    Originally Posted by gerribear
    Have you been on the basic things like refrigerated Acidophilus (for the bowels and vaginal infections), Vit. C extended dose, Vit. B 100 for the pain, detox baths, Magnesium? These are all easy to get OTC and until you get on to antibiotics, may help you a little bit....I've had Lyme for many years, with continuing brain damage, and these are helping me some, along with antibiotics.
    GERRIBEAR
    I see these things and read them ok, but feel confussed .
    probably as its new territory so need to pinch bit of your time hun.
    Vit C
    Vit B 100 ??
    Magnesium
    do these come high enough in a multi vitamin?

    Detox bath ? whats in it?

    How far can this go before you keel over, surely some one has to take notice eventually.
    I question why i find it easy to use the pc, not so much brain fog?
    Is brain Fog fussy, people say if somethings bad it wont go.
    But i have found i feel mine kick in when i try to think or do certain things.
    my dettachment is getting quite severe as im now finding a peace in it.

    THNAK YOU SO MUCH xx for all your words and help
    im quiet a chirpy lass realy

    Last edited by tick tack toe; 09-19-2005 at 06:13 PM.

     
    Old 09-19-2005, 06:13 PM   #6
    Betterdaysforme
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    Re: Neuroligist at BRI Bristol

    Dear jules,

    I am so sorry about your day and the a** of a doctor you saw. People like that should have their licenses pulled.

    I have to tell you that a lot of your symptoms mimic mine. I am travelling next month to Missouri from Dallas, Texas to see a "real" lyme doctor. I am still impressed with a lot of the natural type treatments because so many people on here have responded so well to them. I am hoping the doctor will be open to discussion too even if it ends up being a combo of the two. When I loooked up Nutramedix to find out about samento (a natural remedy) I am sure that some of the testimonials were from some people in England. I read about one young man who went thru h*** for like 20 years and a doctor put him on the samento and he got better. Maybe you can read about this and gain some hope. I can't remember if he gave any doctors names but that would be great for you if he did.

    One thing you didn't mention that I think is pretty classic for lyme is a low body temperature. It seems the bacteria like it that way. If you haven't already been taking your temperature a few times a day then you might try this. There are so many diseases that have a lot of the same symptoms but I think this is one that is not common to all. If I am mistaken then maybe somebody will jump in here and correct me. Throughout this mine has varied between 95.1 and 97.3 most of the time except when I was on treatment then it went up some. Don't forget you can't eat or drink within a certain amount of time when you take it, 1/2 to an hour I think. If yours isn't low don't rule out lyme but maybe it will show up like I said.

    Hang in there sooner or later you will find a caring knowledgeable doctor.

    Betterdaysforme (Maureen)

     
    Old 09-19-2005, 06:24 PM   #7
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    Hi betterday.
    i have for about 6 weeks now been taking.
    blood gloucose,
    blood pressure,
    temperature.

    When i have a severe time.
    i get shakey but internally and i feel cold ( no temperature change)
    i feel weak ,
    The only way i have ever been able to explain it is like someone has removed my spine.
    Im trying to keep up and everything going but have no back bone.

    Anotehr time i feel very strange, salivate alot, go pale.
    blood gloucose at that time has been 9.00
    but i take it again its going down 7.6
    then 6.

    its all un recognisable and i cant pin any symptoms together to get one thing.
    Thats why the lyme seems to fit.
    I will look up teh medication.

    I worry as im on lithium and i would have to find out what happens with that happy bag of tricks

    many thanks all.
    I realy appreciate this xx
    sleep well
    jules

     
    Old 09-19-2005, 07:04 PM   #8
    deejavu
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    Re: Neuroligist at BRI Bristol

    Hi Jules,

    I keep thinking of you and trying to find out the name of the Doctor in Germany for you.

    It is possible that his name is Doctor Fritz Schardt who is associated with the
    University of Wurzburg in Germany. I could be wrong and from what I have read, Dr. Schardt had Lyme Disease himself and has been treating people with Lyme Disease.

    I am not allowed to post e-mail addresses so I hope you can find this doctor in Germany.

    Good luck to you,
    Denise

     
    Old 09-19-2005, 08:40 PM   #9
    cjFTWORTH
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    Re: Neuroligist at BRI Bristol

    Dear Jules,

    I am so very sorry to hear how you were treated at doctor's office... and he didn't even TRY to hide his attitude!! How incredibly insensitive, unprofessional, rude, insulting... it goes against everything that a person with a medical liscense is supposed to represent. And I DO understand the added implications when they pull this crap on someone who has a mental illness label - and worse yet, SO DOES THE DOCTOR!! I've been there and I'm so sorry you had to experience this...

    For the sake of your health, I encourage you to set it aside until you get your health turned around. Make some good notes, and then pursue it when you are healthier. He is NOT worth expending the energy it takes to go after him at this time - my thoughts from experience. Take care of YOU. You know you are sick, that you are not imagining your symptoms and that is all that matters. You must get to a LLMD and that may require much energy, but you can do it.

    I pray God's hand of protection on you Jules. That he guide you and expedite your getting to a doctor that can help you and that this hurtful experience not do any more damage to you... it was about the doctor, Jules and not about you. May you sleep well. cj

     
    Old 09-20-2005, 08:16 AM   #10
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    hi all what lovely words
    thank you so much.

    after a very frightening and rough night, i have decided to come off the lithium.

    last night i had 3 attacks, absolutely frightening.
    no way to explain other than.

    If you have talked in to a air fan your words get sliced.
    while i was breathing in my air was being sliced and it sounded the same of teh breath in.
    rapid pulsations down left arm top left body.

    well here i am today ringing round loking for a heart monitor.
    well heart disease, attach, angina, all of this is not time predjudice you either have it or you don't.
    well mine is only at night and i take my lithium at night.

    teh deep deep fog i have has settled also.

    i still know that i have something more than i had 3 years ago , i still belive that as i have symptoms as you know.

    But my highest fear at this time is dieing in my sleep because of these problems and now i hope they go.

    Shame lithium is a wonder drug on my brain, ( way of thinking) but not my body.

    So heres to knew horizons.
    Jules xx

     
    Old 09-20-2005, 08:58 AM   #11
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    Re: Neuroligist at BRI Bristol

    it so concerns me that you will just drop your lithium... i was originally on lithium so i do speak of experience...

    for you to risk going full blown manic, or depressed on top of this other 'great fight' sounds like absolute chaos to me... once there, you may not know how to ask for help... giving you the best that i've got... your call but please be very prudent about dropping your psych meds... will you inform docs, family, have a back-up plan?

     
    Old 09-20-2005, 02:01 PM   #12
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    Quote:
    Originally Posted by cjFTWORTH
    it so concerns me that you will just drop your lithium... i was originally on lithium so i do speak of experience...

    for you to risk going full blown manic, or depressed on top of this other 'great fight' sounds like absolute chaos to me... once there, you may not know how to ask for help... giving you the best that i've got... your call but please be very prudent about dropping your psych meds... will you inform docs, family, have a back-up plan?
    Cj im so sorry i didnt mean to panic you, i would not stop any meds immediatly, i did that with mirtazapine and bang did i get shot into space.
    I suffer dissasociation more than mania when quiting meds very disturbing so i see your worry for another as full compastion and caring and i thank you.

    I never had these problems around 600mg, which is below the theraputic dose but i was comfortable for a while.
    I am going to reduce tomorow night , but i have a gp appointment tomorrow.
    Just to log in all my troubles.
    she will not cross the p doc and her dissisions, and my pdoc is going to hit the roof but i dont care.
    I feel like im dieing at night.

    If they all get pissy then pdoc will stop seeing me, and tuff, i will have no choice but to (SLAP HAND) sori moderaters, self medicate.

    im more lost now than i was when i first asked for help, my thought process is in gel and to take a file out my brain takes ages.

    I will let you know how i go tomorrow, thank you so much again.
    i must get some enfo on teh detox bath stuff, and extras i can do at home.
    just get confussed reading a new subject.
    Oh well slowly slowly cathie monkey
    byeeeeeeeeeeeeeeeeeeeeeeeeee

     
    Old 09-20-2005, 02:07 PM   #13
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    Re: Neuroligist at BRI Bristol

    very good to know...
    keep us posted... hope the fog lifts...cj

     
    Old 09-21-2005, 11:43 AM   #14
    tick tack toe
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    Re: Neuroligist at BRI Bristol

    Hi Cj
    had gp appontment today who actually sat and listened.

    I am having lithium Side effects, these are extremely uncomfortable and if left lethal.

    not only was teh neoroglogist ignorant to this, but my phyciatrist who i sat in front of on the 10th and explained my heart has stopped, im haveing siezures, im blacking out, i have vertigo and now broken my foot whilst falling form vertigo.

    Still advised me to see my gp for physical complaints and passed me off untill NOVEMBER!!
    The effects i was having she said were caused by stress.

    Thanks pdoc, you nearly killed me.

    Now i have to sit in the same room as teh woman that was so complasent with my life i nearly died and i am suppossed to trust her with my future medications.

    This whole situation is a joke and brings home so strong the belief, that even to your own phyciatrist, that if you have mentall illness you are deemed to have no judgement on your health.

    i fear what possible mental longterm effects i could of had or may have been left with.

    Thank you for all teh support and posts and thoughts.
    anyone suffering lithium problems please do not hesitate to contact me if you feel you need some clarification on what ails you.

    good wishes and thoughts to you all
    love jules.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxx

     
    Old 09-21-2005, 11:54 AM   #15
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    Re: Neuroligist at BRI Bristol

    wow jules,

    thank god you got in to a doc who WOULD listen before symptoms were irreversible or worse...

    these stories just make me nuts... but i'm choosing to not go there today. i'm just exhausted with all the docs who would rather judge, pass off, and basically, sit on their lazy @#$%'s... okay, enough.

    so do you still have to taper off the drug? I went from lithium, to depakote and am now on topamax. that is over about an 18 year period and never really had problems on any of them. topamax is good because it doesn't require blood levels being drawn...

    does gp want to see you again soon? are you going to let psych and neuro know of results?

    mainly, take care of YOU... and thanks for the update... cj

     
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