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    Old 03-21-2005, 01:53 AM   #1
    mletters
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    Extreme symptoms please help

    Hi,

    I have been suffering from a mysterious illness for the last 18 months. Every day I cycle through dizziness in the morning (30 minutes after getting out of bed), waking up at 06am every morning on the ***. Vivid dreams/nightmares every night. Then when I get to work I have the wierdest symptoms.

    I am afraid but I don't know what of. I just feel really empty and down inside. Whenever I have to meet someone or walk toward someone, I feel like I am going to pass out. I get what feels like a rush of blood to my head. Then my arms and hands just dont feel right. If I try to drink something I feel as if I would drop it. I shake uncontrolably.

    I also notice a horrible pressure sensation behind the top of my nose and forehead. It just doesn't feel right when I look at people I have a horrible dizzy sensation (not vertigo).

    My armpits are drenched by the time I have got to work. My hands are sweaty.

    Also, my jaw goes stiff and sore. I also have Tinnitus, TMJ, neck pains, insomnia, depression, weak legs with random pains in them every day.

    Can anyone please help me? I've tried 18 doctors and all just say all tests are normal. I really feel like I AM GOING CRAZY.

    I can't go on for the rest of my life avoiding everyone and living in ISOLATION. Right now I cant see me living beond the end of the year!

     
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    Old 03-21-2005, 04:50 AM   #2
    ncgirl88
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    Re: Extreme symptoms please help

    Welcome to the Board mletters!

    Your symtpoms certainly could be due to a tick borne disease and your experience of seeing that many doctors and the fact they are still unable to figure out points strongly that it is a tick borne illness since the vast majority of M.D.s are clueless about how to diagnose these infections.

    I had many of the same symptoms you had - including dizziness that began when I awoke in the morning which then turned into severe dizziness and passing out feeling through out the day.

    I even made it to Johns Hopkins and still my blood work was supposedly negative for tick borne illness - The testing is really very flawed for these diseases and it must be a clinical diagnosis.

    Along with lyme there are coinfections that you can get from the same tick - Babesiosis, Ehrlichiosis, Bartonella, and Mycoplasm for instance. You need to see and LLMD (lyme literate M.D.) which Ticker here on the board can help you find if you list the state in which you live.

    It is very important that you go to an LLMD so that you have a shot at having bloodwork send to a good lab like IgeneX Labs in CA and that you get proper treatment. Babesiosis for instance is caused by a malaria like protozoan that must be treated first before the lyme can be treated or you will never get better - most M.D.s don't even know what Babesia is.

    I never had a rash like the typical bull's eye - nor do I remember being bitten. Ticks can be as small as this . and as the JH doctor told me "like dark, moist places" - you get the picture and while it is not a pretty one it is the reality that most doctors just don't get.

    Good luck and don't give up. I went into denial for a few months when I was sick because everyone kept telling me I was fine. I wasn't - I was really really sick and finally got help from an LLMD. I am on the road to recovery.

    Take care and keep us posted!

     
    Old 03-21-2005, 06:36 AM   #3
    mletters
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    Re: Extreme symptoms please help

    Hi'ya,

    Thanks for the quick reply. I feel a bit better this afternoon. Strange, but my dizziness/panic/anxiety seems worse in the morning.

    I've been to my GP's again last week and he has started me on 200mg of Doxycycline (AB's) just in case this is Lyme.

    The strangest symptom I'm getting over the last couple of days is a numb toungue/mouth. I'm not quite sure which - I think toungue. It lasted a couple of hours and has only just disappeared now since I've eaten. This is a strange new symptom. Could this be a side effect of the Doxy? I've also started taking Amytriptyline 10mg nightly for pain/sleep.

    The good news is I'm getting a sleep study done in the next few weeks. I've had to wait months for a Neuro app't to set this up!

    My GP isn't Lyme literate and I'm worried that 2 weeks of 200mg Doxy isn't going to be enough to kill this thing if it is Lyme! I'm in the UK.

    --- *** Does anyone know of any Lyme literate Docs in UK? ** ---

    Here's a recap of all my latest symptoms. I feel like I'm going mad, but I know I'm not (if that makes sense ?!?!). I'm the one who lives with these symptoms daily. Doctors CANNOT and WONT be allowed to pack me off to a psychiatrist. At the end of the day Antidepressants just mask symptoms and don't cure any underlying disease process. I know I am ILL !!!


    Recap of my symptoms.
    ==================

    Waking up 06:00 every morning with broken sleep (neither awake/asleep from 6am - strange thoughts run through mind automatically)
    Vivid dreams and nightmares every night
    Random Episodic Anxiety (cannot approach people any more)
    Random Episodic Panic Attacks (unrelated to anything)
    Random Episodic Depression
    Crying outbusts for no reason
    Extremely sore neck and shoulders (worse when in bed)
    Sore Leg calf muscles and knee cap joints (worse at rest)
    Legs feel light but can still walk (2 miles a day!), goto work etc.
    Burning Eyes but no redness in eyeballs
    Puffy Eyes (outer corners very sore and go red if touched)
    Hoarse voice (loss of lower ranges)
    Discolored phlegm (sputum) - worse when lying horizontal
    Tinnitus (worse on left side) - also failed Caloric test on this side but hearing -near normal. Possible Vestibular damage/CNS damage?
    Dizziness (not vertigo)
    Carpal Tunnel (mild)
    Clumsiness (bumping into door posts)
    Short term memory loss
    TMJ
    Face fullness episodic jaw pressure (gets worse with stress)
    Forehead pressure (gets worse with stress)
    pressure behind top of nose (worse with stress)
    Random short headaches
    Neck pain/forehead pressure worse when lying down with pressure on back of head.
    Intolerence to Antidepressants of SSRI kind (can tolorate Tricyclics but dont do anything)
    Nasal openings swell and extremely painfull to touch for days (one sided)
    Post nasal drip
    Periodic Belching
    Periodic Excessive Flatulance
    Cant walk into large buildings (mall's, supermarkets etc)
    Cant tolerate excessive loud noise
    Jaw clenches tight shut and then opens (split second) when trying to sleep (I actually have physical teeth damage because of this!)
    Drugged, light bodied feeling
    Normally red throat/hoarse voice has becomes SORE last couple of days.
    Numb toungue (or roof of mouth - not sure which)

    Current medication & Vitamins
    Amytriptyline - 10mg nightly
    Doxycycline (200 mg morning/night)
    Natural Adrenal Supplimentation
    High EPA fish oil
    Probiotic drink every morning

    Current State of mind
    - MRI says I have a brain (reassuring !!)

    Current Mood
    - Fed up! and getting worse by the day!

    - Sense of humour
    Warped and getting worse by the day!

    Take Care,

    Mike.

     
    Old 03-21-2005, 10:03 AM   #4
    6Blues
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    Re: Extreme symptoms please help

    Hi Mike.

    Don't give up on getting yourself to an LLMD (Lyme Literate doctor) in addition to your GP. You may not be taking a high enough dose of abx (antibiotics).

    The symptoms of Lyme disease are wide in scope and also vary from individual to the next. I spent months bouncing from one doc to another prior to being treated for Lyme.

    I don't know of an llmd in the UK but perhaps someone else can direct you.

    Sorry to hear that you are feeling so bad. Hang in there. I also isolate myself (some weeks my only trip out of doors is to the grocery store).

    Welcome and hang in there,
    Mickie

     
    Old 03-21-2005, 10:37 AM   #5
    outinthe_woods
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    Re: Extreme symptoms please help

    Hi, Mletters!

    Welcome to the Board.

    I can tell you from my experience that last year my GP finally agreed (grudgingly) to put me on the lowest dose of ABX - and it didn't work! I kept getting worse and finally went to an LLMD who put me on 1500 mg Flagyl/daily and between that and the detox baths, I am finally beginning to feel better. I've had Lyme & herks for many years.

    As posted by others here, 200 mg Doxy per day is too low. Try to read through as many posts as you can and you'll see that your symptoms are similar to ours. You'll learn a great deal from the posts of others here!

    I have the same discomfort in my nasal/forehead area and when I go on ABX, I consistently have a thick dark green discharge, eventually thinning and turning clear, and tho the docs say that clinically there's no proof of a link between the sinus problems and Lyme, I know that there definitely is for me.

    Hang in, try to get a higher dose of meds and know that you have support here, if nowhere else!

    Last edited by outinthe_woods; 03-21-2005 at 10:39 AM.

     
    Old 03-21-2005, 02:57 PM   #6
    Betterdaysforme
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    Re: Extreme symptoms please help

    Dear Mike,

    Welcome to the boards. It will be your lifeline as you trudge through this disease. It sounds like lyme but only an llmd will be able to confirm. I'm sure Ticker (our resident detective) will find a doctor's name for you even in the UK. I have a lot of the same symptoms but after years of this can't even walk 1/4 mile when I used to walk 5 miles a day. I don't mean to scare you , mine was just not diagnosed for 4 years before I got treatment. I encourage you to keep your sense of humor because it will sustain you. Good luck in your recovery and keep us posted.
    betterdaysforme

     
    Old 03-30-2005, 01:51 PM   #7
    mletters
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    Re: Extreme symptoms please help

    Hi,

    I just wanted to update with results of 200mg daily Doxy for two weeks. If anything I now have more symptoms. Along with the list of earlier symptoms, these ones are kinda embarassing (sorry for being so frank!.... I have a flaky type rash on my testicles but no itching, extremely sore anus and have just noticed a little bleeding - could also be with wiping too hard?). I had these same symptoms around the same time last year, but it disappeared after a few weeks.

    That's the nasties out of the way.... on a lighter note ...... I forgot that the Doxy makes you 'photosensitive' and went out doing some light building work last weekend (we are getting a new summerhouse delivered soon). I was only in sunlight for an hour or so...... 24 hours later....... my face was bright red! I don't tan at the best of times so this freaked me out! Now my face is peeling and I've got back to my normal pale self !!

    Everythings still tough at the moment with daily symptoms of dizziness in the morning, high anxiety, eye pressure, forehead pressure, sore neck/shoulders, random body pains, night time dreams/nightmares, tinnitus etc. I'm beginning to believe I'll be like this for EVER! I can't think of anywhere else to try! I want so much to beleive that this will be found/diagnosed/cured? but if I everyone keeps telling me all tests are normal, I feel like I'm the one going mad!.

    Take care,

    Mike.

     
    Old 03-31-2005, 07:18 AM   #8
    ncgirl88
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    Re: Extreme symptoms please help

    Hi MLetters - I am sorry about your symptoms. No fun!

    I can tell you that I have had the rectal bleeding from an internal hemmroid that was found upon a colonoscopy - I never had this problem until I got lyme, ehrlichia, and babesia.

    The numb tongue I have had numerous times but in conjunction with migraines where I have visual auras too. I get this weird numbness that will literally jump from my hands to my face then into my mouth - my gums and tongue go numb and even my throat once. That was strange and scary.

    I will say after 6 months of antibiotic therapy I am getting so much better. The rectal bleeding is few and far between.

    200 mg of doxy is not enough. You need to find an LLMD who knows what they are doing. Here Ticker often says between 300-500 mg of doxy or is it 300-600 mg...I don't remember is the ideal dosage for doxy if fighting tick borne illness. You need to see an LLMD who knows how to dose you. For instance mine has me on two different antibiotics at once...to attack lyme intercelluarly and outercelluarly then flagyl pulsed to attack the cysts.

    Take care and keep us posted. Hang in there - this will not last forever if you see an LLMD who knows what they are doing.

     
    Old 03-31-2005, 10:06 AM   #9
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    Re: Extreme symptoms please help

    As I've not been on doxy...

    Can someone warn him about drug interactions: is this one of the drugs that is a 'no milk products within so many hours'...

    Also, Mike, you learned the hard way, stay slathered in sun screen, even for car rides, I have read that. When you're up to the 400-600 dosage I would assume it is even more imperative to stay out of the direct sun for any length of time... wear hat, long sleeves, etc.

    I think it is quite telling that a low dosage of doxy seems to have increased symptoms... The 200 is definitely too low. If Ticker doesn't catch this thread for some reason, post a new thread and ask her. She is extremely knowledgeable about meds, doc, disease, you name it.

    Also, maybe one the the men will read your post and reply to flaking skin. I've read about testicles being affected in different ways by lyme but don't recall details.

    Blessings, cj

    Last edited by cjFTWORTH; 03-31-2005 at 10:08 AM.

     
    Old 03-31-2005, 01:44 PM   #10
    ohio hunter
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    Re: Extreme symptoms please help

    hi mike

    i do not have the flaky rash but i did have the butt trouble, hemroid, fishers repaired.

    one thing to remember is lyme symptoms increase in the spring and fall.

    jon

     
    Old 03-31-2005, 02:15 PM   #11
    Komondor
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    Re: Extreme symptoms please help

    Hi Mike,
    You can add me to the butt list too although it stopped a few months after starting treatment. I was told it was fishers as Jon said. It may be so but my butt is totally cleared up now and I had that for many years.

    200 mg of doxy will never be enough and you really need to be tested for co-infections. Please see an LLMD ASAP. This is your health and you are you own best advocate.

    Dairy should not be taken within two hours before or after doxy. Also you should not lie down for at least an hour after taking it as it can burn your esophagus. I believe Ticker had this happen and says it is very painful.

    You can burn you skin much worse than you already have so be very careful. You do not want to blister your skin. Once you get a really bad burn it is even more sensitive to sun... My husband learned the hard way too.

    My friend had to use that purple zinc all over his body. He said the neighbors used to take a double look at him working in the yard lathered in purple.

    Also, you will beat this. My same zinc friend is doing wonderful. Feels better than he has in 6 years. He quit all meds about 10 months ago now.

    Last edited by Komondor; 03-31-2005 at 02:18 PM.

     
    Old 04-01-2005, 05:58 AM   #12
    ncgirl88
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    Re: Extreme symptoms please help

    Hey Kom - How long was your zinc friend in treatment?

     
    Old 04-01-2005, 09:54 AM   #13
    Komondor
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    Re: Extreme symptoms please help

    He was in treatment for 7 months. He was sick for 5 years with mostly fatigue and bad brain fog. Originally diagnosed (bulls eye) treated with typical short term treatment and never felt good again. Treated an addional 3 times after initial infection once with another bulls eye all being short term 200mg/2 weeks.

    Last edited by Komondor; 04-01-2005 at 09:57 AM.

     
    Old 04-01-2005, 05:31 PM   #14
    ncgirl88
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    Re: Extreme symptoms please help

    Ah - thanks for the info...So no coinfections for him, huh?

     
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