What is Lyme Disease
Lyme disease or Lyme borreliosis is the most common vector-borne disease in the Northern Hemisphere. Named after the town of Lyme, Connecticut, it is now one of the fastest growing...
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SO MANY SYMPTOMS!
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Do you have ever just have SO MANY symptoms you cant make sense of them? You cant tell where they are coming from? Or what hurts and what doesnt hurt? I feel like there is SO MUCH going on with my body right now that if I went to a doctor and he said "what are your symptoms?" I wouldnt even know what to say. I think my only response could be " I feel like my body is falling apart" or "I feel like Im dying!!" I swear I really think that sometimes. I read a post the other day where the woman said he doctor told her she had to symptoms of someone that is dying. And I started to panic...of course then that would mean ive been "DYING" for the last 5 years...so...I would be dead by now right? I hate getting my hopes up when im feeling "good" because then they are just squashed when all my symptoms come back. I hate missing out on the fun in life. Sorry my posts are soo negative these days. I feel like ive really fallen back into a "flareup" and just cant WAIT until I feel some relief again. But DS keeps me going..it really does. I have met so many wonderful people on here that really keep my head up and remind me that this is the end and that I will be better one day.
Posted on 07/03/09, 10:07 am |
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Hi butterfly, I was so sad to hear this. I look at your avatar and read your profile and it just doesn't look/sound like the same person :-(. It sucks to be sick especially around the holidays. Kids and a loving husband only makes it more stressful sometimes. Even worse, you know what you're missing (many people forget!).
Maybe something encouraging is that while is you have "so many symptoms", they all belong to the same disease. And it is treatable, it just takes time and the treatment is not fun. I got better despite the odds/ My LLMD actually said "you must have 9 lives!", because I didn't treat my body very well (understatement of year). So hang in there and keep posting. 
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Thank you for your reply. I guess sometimes I worry that maybe I have something else other than lyme. SOMETIMES I feell so ILL that I think "I must be dying"
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For months now I have kept a health journal. Every day I write down when stuff pops up. Just notes, not lengthy. But its every day documentation so I dont forget, because there ARE so many things that I DO FORGET - especially when I feel no pain - rare.
Even with all of that I am nervous about seeing a new doctor because when he asks whats wrong, I am gonna pull out a big list. You have to believe you will get better. Hope: So there is always something to live or and Positive Thinking: so that your mind is in a place to help your body heal.
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MAtt..thank you.. I gotta say I love your advice the most these days. You seems to stay soo upbeat and positive even when you are at your worst. Thank you so much for being such a good friend and keeping my head up as well.
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Also...I am gonna start a health journal today.. I also am a VERY forgetful person so I think I will def benefit from it.. Also I always get all tongue tied when I go to the doctor so it would be great to have a record of how id been feeling.
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You are welcome :) Thanks for being a friend as well. I guess its a good thing I don't write all the negative stuff I think sometimes. So many people have helped me here. And im thankful for all you guys/gals.
The journal is a good idea. I have an iPhone so its all on there. That way I can jot notes down wherever I am. Its so helpful. I get tongue tied and forgetful too.
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This disease is so complex that the only way to tell if you are getting better is if you are feeling bad. I know that sounds weird but it is true. Our doctor asked my husband why hasn't he upped his med to 3 times a day and his reply was that he sees what happens to me when I do and it scares hinm, he doesn't want to get sick like that again.
The doctor told him that if he stays where he is then nothing will continue to happen but the lyme will get stronger. I don't like feeling like crap but I have done enough reearch to lnow that in order to feel better you have to get sicker. Because when your sick that means those little suckers are dying. It just bites that we have to suffer again to get rid of this thing. I swear itis from the devil because it is evil!! I hope you start tp feel better soon. I know it is tough but try to hang in there. I know about missing out on everything. My family always wants me to go swimming but when you have a migraine or the chills that just doesn't fly. God bless and good luck.
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Hi Butterfly, Yes - I know exactly what you mean about feeling like you are dying. I've felt that so many times and also during recovery -- interestingly, I feel like the lymes, being a living being of sorts, can feel on some level when we are killing it and some of the dying feelings are actually IT dying within us - so it can be good, even though it feels bad - I know this sounds odd, but it is something I'm experiencing in my healing from it. And, yes, with eradicating more of it, you can feel worse as it's leaving your system and better down the road - (a long road - sigh)...I am starting to notice some healing, finally, though I still have a ways to go.
Keep on healing! hugs, clairejean
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Hi. I am a new member. I've watched my first born son become debelitated from the age of 7 for 9 years before finding an article on Lyme then finding a Lyme specialist and getting a diagnois. He kept testing negative over the years. Anyway, he also has claimed to "feel like he is dying" on an off since beginning treatment. He is now 16 and has missed out on so much of life and school. One year of high school and is behind now as well thanks to the incompetent school district we moved to 3 years ago. It's hard to get him to take his meds regularly. He was on IV for several months but ended up in the hospital for 2 weeks from two deadly bacterlal infections,resulting in his PIC line being removed. Hoping that orals will be strong enough to kill this dreadful disease since he's had it so long now. But he gets sicker when he's medicating which is supposed to be a good sign..herxing...
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Vaebutterfly, you just expressed exactly how I feel. So, you're not alone. And we have to think that though we feel like this now, we have healed in some ways and are healing in others.
Still, I'd like to know how symptoms can be so overwhelming and constant. I find that I feel like this whether on or off of abx. But I do see areas of healing. So maybe for us it might be best to try to write down areas where we've made recovery. I know that I no longer have the horrible air hunger that I had, and my heart isn't always racing as it did. Cognitive function has improved dramatically. Balance is better. My once constant headache now comes and goes.
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