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    Old 10-08-2008, 04:30 PM   #1
    Tamaralynn
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    Lyme Disease??

    Oooookay this is my third posting of pretty much the same thing from around the site. Please bear with me

    What bothered me lately (over the past year) is that I seem to wake up at night, my body feels like it's completely vibrating, my mouth goes numb and my heart starts to feel like it's racing. My muscles will twitch in my upper body (chest, shoulders arms etc). This can last anywhere from 10 minutes to an hour. It doesn't happen every night - and at times it's little noises that seem to set it off in my sleep (or half sleep). I don't tend to get night sweats, or problems breathing during this.

    I've been to a couple of doctors regarding this and they just gave me Ativan (for anxiety attacks). I had tried this a few times, and it never did anything - they had even bumped up the dosages and I eventually gave up on them (no point in taking medication that doesn't work).



    What made me wonder if it was the possibility of seizures is that I sometimes get spacy at work.

    I'll be sitting and reading a book during my break and I just start to tremble (hands, head etc - kind of like an elderly person who can't keep their heads still). I'm 28 years old. After my trembles, I always feel spacy - usually dizzy and it seems like my sense of smell has been extremely hightened (I smell things that don't seem to fit in where I am), and I get a metallic or odd taste in my mouth. Sometimes I feel ill to the stomach afterwards, sometimes I don't.

    I've also been noticing some strange memory loss - I'll be doing some work and KNOW what I have to do (I do it every day!) and all of a sudden, my mind is BLANK! And it takes a day to remember it (e.g. username at work in one of the systems we do - i had never had problems before remembering it... and all of a sudden it's GONE from my mind and I can't remember it completely for a day or two. This is rare but it has happened twice from what I can remember.

    Other problems i have been experiencing are:

    -Severe burning headaches (I wake up with them and they last for a day or two... nothing helps - and they always originate from the left side) Happens once or twice a month.
    -Chest "vibrations". This is not painful - but it kind of feels like when you have a chest cold and your lungs rattle when you breathe (I do not have a cold), lately this has been an ongoing thing... and hasn't seemed to stop over the past week.
    - night time chest/shoulder pains (left and right side). This is not the same as the "vibration feeling" mentioned above. (Doctor has ordered chest x-rays for this and the vibrations)
    -GERD (prescribed Nexium)
    - Severe nocturnal leg/foot cramps (I've been prescribed quinine whicn seems to have worked, cramps are no longer as severe)
    - fatigue
    - unexplained swollen lyph nodes behind the ears (sometimes painful, sometimes not). Doctor doesn't seem to think it's connected to any infection (blood tests prove, and he has now ordered Skull x-ray)
    - Unexplained swollen ankles (not during PMS) heart related?
    - missed periods - all urine and blood pregnancy test show negative (prescribed Marvelon).
    - feeling of "losing my mind" and worry that I'll "snap" at any given time... this has been more recent.
    - wake up suddenly to a loud noise from outside (I live near an Airport and the "boom" of a plane "stopping" will make me wake up suddenly gasping for air and thinking my chest is going to explode from the sudden terror followed again by the body vibrations and tongue numbness/metallic taste.
    - sometimes I have a stabbing pain in my chest/back when I take deep breaths, very painful.
    - Strange "lump" on my back... underneath the left side of my ribs. Doc think it's old scar tissue from a serious injury from when I was younger - but I've never had any kind of serious injury, and never in that area. Sometimes It's extremely painful to move or lay on - and sometimes it's just there (painful to pressure)
    - my lower back is ALWAYS painful to pressure. Doctor has ordered massage therapy.
    - tendancy to drop things without warning... I just lose grip on something I was holding normally.
    - every once in a while I'll break out in these strange rash like scaley patches around my body. It's not quite itchy, but they're ugly as sin. I usually dab on some Selsun Blue one night and wash off the next morning and it goes away within a few days. One doctor diagnosed this as Tinea Versicolor.


    I've been to the doctor and have had blood tests, they all show up as normal.
    The doctor is now sending me in for a Skull and chest x-rays.


    I have posted this on a couple of boards, adding some more symptoms that I remember. And one person actually mentioned that Lyme Disease sounds like my symptoms.

    I remember I was picking my kids up from daycare about 5 - 6 years ago. Once I got home I made dinner, then went to the washroom and noticed this strange blackish/brownish thing on my collarbone (or just under) I thought it might be a spider. I kind of freaked out (I HATE BUGS of all sorts), and started slapping and swiping at it - eventually knocked it off. I don't remember if I ever ended up getting any kind of ringlike rash reaction, but my husband agreed that it was a tick. it was tear shaped and was about the size of the push part of a thumbtack. I just forgot about it after a while.

    Do you also think this may sound like Lyme Disease? I'll be asking my doctor about it on my next visit.

    Thanks for listening

    Last edited by Tamaralynn; 10-08-2008 at 04:53 PM.

     
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    Old 10-08-2008, 07:56 PM   #2
    ktinbk
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    Re: Lyme Disease??

    Hi Tamaralynn, welcome to the board. Lyme disease can have sooo many symptoms it's hard to know where to start. but you should know that a significant amount of people with lyme disease never develop the rash and that it is a clinical diagnosis and not one based purely on blood tests (a lot of people with lyme test negative for a long time).

    I share a lot of the same symptoms as you and i do have late stage lyme disease as well as the co-infections bartonella, babesiosis, and erlichea. i've probably had these for a good 10 years or so, and i'm 26 years old. i don't remember being bitten the first times. i was bitten again over a year ago and developed even worse symptoms.

    if i were you, i'd track down a lyme literate medical doctor and get tested right away. a lot of other docs mean well, but they simply don't know what they're doing in treating lyme. even infectious disease drs which are supposed to be the experts. if you look at the sticky on this board, you may be able to find one in your area. or you can post with a location and people can help you out. they will test you through a reputable lab like Igenex and also do a full exam of all your symptoms to make a clinical diagnosis.

    i also have 'night tremors' as i call them. i went a good 6 months without them only to have them start up again this week (which is why i'm on this board so late at night... i'm afraid to go to sleep for fear i'll wake up shaking/tremoring and/or terrified). i also have the memory loss, digestive problems, lymph nodes, etc. all of these can be related to an ongoing infection. lyme can also hide in cysts - you might want to get an MRI of the lump in your back and see what's going on there. i have cysts in my brain now that we're trying to break open.

    i wish i could be of more help, but i'm having difficulty articulating today. best of luck and please keep us posted.

     
    Old 10-09-2008, 05:52 AM   #3
    jojo
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    Re: Lyme Disease??

    Hi Tamara Welcome to the board. Yes you do sound like you have Lyme. I read your post and the lady you e-mailed. Wow she was really helpful!

    I just want you to know that Lyme testing is not accurate. This is why she suggested you go right to Igenex Lab, in Palo Alto, Ca. They have the most accurate testing...But this does not mean that they are 100 percent either. I tested negative both times and have lyme.

    You might call her and keep in touch with her through this ordeal. She sounds like she truly knows what she is talking about. I would try and contact this doctor she gave you a lead on. There are "not" very many doctors that will treat lyme. And it sounds as though you need to start some type of treatment protocol right away.

    So sorry you are having to go through this. But it sounds like you have found your answer. There is no quick cure for lyme, especially when one has had it as long as you. And there may be lasting effects, but the good news is you can get better.

    I am going on 9 years of antibiotics/supplements. There are also some homeopathic ways of treating lyme that some people have a better cure rate on. Were all different, what works for one person may not work for another. Read as much as you can about Lyme. Make sure you are tested for such things as , Mycoplasma, Chlamydia Pnumoniae, Babesia, Bartonella, there are many co-infections that a tick can transmit also. You will also need to have your titers tested Epstein Barr and Cytomeglovirus. These love to take over when the body is so ill.

    Let us know if you have more questions.

    Jodie



     
    Old 10-09-2008, 02:54 PM   #4
    Tamaralynn
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    Re: Lyme Disease??

    All I can say, is it's nice to know that it's not "NORMAL" to live every day in pain. There is always SOMETHING that hurts...

    I got sick of people always rolling their eyes at me or mumbling something rudely under their breath - that I just stopped.

    Now I'm so upset that I've waited this long.

    What terrifies me is on "good days" I'VE DONATED BLOOD!!!!! How am I supposed to explain THIS to them??? Am I going to have some legal action come at me??

    Last edited by Tamaralynn; 10-09-2008 at 02:55 PM.

     
    Old 10-09-2008, 03:02 PM   #5
    jojo
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    Re: Lyme Disease??

    Hi Tamara, try not to get yourself upset. You didn't know. I don't know even if you told the people where you gave your blood to if they would even try to track the people down that receieved your blood.

    Let us know how things go for you.

    I do believe your on the right track now....

    I hope you find a treatment plan and get to having more good days than bad.

    Know that your not alone.

    Hugs



     
    Old 10-09-2008, 04:40 PM   #6
    Tamaralynn
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    Re: Lyme Disease??

    What I don't get is that there has never been a confirmed case in Alberta (or so the government says)... I'm worried my doctor is going to laugh at me Hence the reason (I guess) that it is so important that I at least try to get that test.

    You're right - I can't feel bad about the blood donations. They called me a couple of days ago, and I just told them that I didn't feel well enough to donate.

     
    Old 10-09-2008, 06:59 PM   #7
    ktinbk
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    Re: Lyme Disease??

    Hi Tamaralynn... best of luck with this. don't let others get you down. i know you've been through a really hard time and that other people can't understand. but you must trust that you know your body better than anyone else, that you can get to the bottom of it, and that you can be healed. this board is always here if you have questions, fears, rants against lyme, etc.

    i had to go to several doctors before i found one who would do the blood work for Igenex. but please get it done. and please do call that doctor. he can probably tell you if you should be treated for any coinfections - bartonella, babesiosis, erlichea. i have all of them. treating each of them has been the hardest but i feel so much better afterwards. that doctor can also tell you what to expect during treatment - have you heard of the Herxheimer reaction?

    when i first joined this board someone recommended that book Everything You Need to Know about Lyme Disease by Karen Vanderhoof-Forschner. i would definitely suggest that for you. I also got a great book on holistic treatments called Chronic Fatigue, Fibromyalgia, and Lyme Disease. of course it leans more towards chronic fatigue and fibro before getting into lyme, but there are some great case studies in there that are really reassuring.

    best of luck and please keep us posted!

    kt

     
    Old 10-10-2008, 07:13 AM   #8
    Tamaralynn
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    Re: Lyme Disease??

    I've read many threads regarding those who have Lyme Disease. And mine just don't seem as bad.

    I should mention that I do not have my symptoms ALL of the time, Sometimes they are more prounounced at times than others. And there ARE days when I'm feeling okay. And some symptoms seem to act up weeks or even months apart.

    E.g. today is a good day. I got a couple of headache pangs, but were gone within minutes. I do have that "cat purring" vibration on my chest on and off... but it's not painful. My leg is sore behind and just above my knee, but only when I walk.

    I had an excellent sleep last night (no "anxiety like attacks" YAY)- so I'm not tired yet. And some days I'm not even tired, and so full of energy.

    From what I hear, some people with Lyme diease (especially advanced stage) are bed ridden.

    Here's something puzzling about my Anxiety "attacks". When it DOES happen, it's usually around 11:00pm (anywhere from 10:50am - 12:10pm, but usually when I'm woken up by it, when it look at my clock, it's 11 something). I'm NOT woken up by any dreams... sometimes I'll be asleep for only a few minutes, somtimes I'm asleep for a few hours. Odd.

    Last edited by Tamaralynn; 10-10-2008 at 07:14 AM.

     
    Old 10-10-2008, 07:40 AM   #9
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    Re: Lyme Disease??

    Hi Tamara, thank goodness for the good days

    There are something like 300 strains of Lyme. Then there are all the co-infectioins. And then there is our own immune system. So bundle these all up it just depends on what you have, and how your body reacts to the critters.

    I don't mean to scare you, but just because your not bedridden now, doesn't mean it can't happen. My symptoms were all over the place too...Up until it "truly" knocked me down. Years of mis-diganoises....And even during my final melt down, some of my symptoms were still different from day to day...


    some people just have one symptom, some get them all.

    I still wouldn't rule it out until you get tested. And even then it is "best" to see a Lyme Literate Medical Doctor. Your regular G.P. like mine and most of them will tell you it just isn't in your area....Don't believe it. There is Canadian Lyme Support Group I see. And there seems to be many members on it....Sooooo yes Lyme is in Canada...It is alllll over the world.

    Hopefull with this new documentary that is out "Under Our Skin" it will make Doctors treat us instead of cramming drugs down us that we don't need. There is a trailer (short clip) on the documentary if you look.

    Have a great day!

    Jodie

     
    Old 10-10-2008, 07:41 AM   #10
    ktinbk
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    Re: Lyme Disease??

    Hi Tamara,

    I didn't mean to paint a really terrible picture. I'm actually considered to be a "good" case of Lyme as well in that I can function pretty normally most times. I hold a steady job, volunteer actively, etc. All of that had led doctors, friends, and family to think that those times when I WAS in excrutiating pain that I was exaggerating, making it up, stressing myself out, or just experiencing anxiety. In fact, there were a lot of times in the past 5 years that I was able to convince myself that they were right. Until it hit me again and I'd have another period of pain, weird symptoms, brain fog, etc. It wasn't until it did make its way to my brain last fall that I realized this thing was going to kill me if I didn't get help.

    I've had it for at least 10 years, probably more. I have new friends and acquaintances who have had it for less time and who are completely bed-ridden and nearly incapacitated. It affects all of us differently depending on the strain you have, your immune system, what kinds of medicine you might've been on since having it, co-infections, etc. I don't say anything of this to scare you at all, but I've become very passionate since learning that I could have nipped this in the bud a lot earlier had I listened to my body and not let others make me doubt what I was going through.

    If you are functioning well now, that's a good thing. I've been able to work through this with only a couple missed weeks of work here and there. I won't say it's been easy. I've had herxes that I thought would kill me but I've also had several months where I felt better than I've ever felt in my entire adult life. I never knew what "normal" felt like until I experienced a good 2 month period this summer and it was the most liberating thing I've ever felt. I think you are doing the right thing in making sure that you are making an informed, educated decision. I would definitely encourage you to continue to study Lyme and to speak to this doctor as soon as you can.

    hope that helps,

    kt

     
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