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  • the lyme, fibro, cfs connection

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    Old 02-15-2008, 07:07 AM   #1
    tiredpoet
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    the lyme, fibro, cfs connection

    I've been reading a lot about this, and the LLMD I just started seeing has done a lot of research on the connection between Lyme, fibromyalgia and CFS. I was diagnosed with fibro and CFS before the Lyme, and all the symptoms are so close it's confusing as all hell.

    When I started reading the "cure stories only" thread (which I love, keep those cure stories coming! I love hearing about people who found treatment and feel better!) it got me thinking: if you don't feel better after years of treatment, maybe it's not the Lyme anymore. For me, with a clincal diagnosis and no positive blood tests, I don't know what to think, but I have decided it's not for me to treat Lyme for years. I'm not going to take antibiotics for years and years. If, after the year and a half my LLMD said it might take, I don't feel better at all, I will probably assume it was never Lyme. If I feel somewhat better but still have persistent symptoms, I will accept that I have fibro and/or cfs (possibly as a result of the Lyme), and will work on that.

    I know what I have is "chronic" Lyme, but the idea of antibiotics for more than 18 months makes me weary. All that info about candida and how yeast can cause so many things...it is scary because there's so many "overlapping" conditions, and treating one could be hurting another.

    Does anyone else worry they might be treating the wrong condition, or is it just me?

     
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    Old 02-15-2008, 07:44 AM   #2
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    Re: the lyme, fibro, cfs connection

    Hi tiredpoet. I think many people question their diagnosis early on. From what I understand, many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

    It can take time, but people do get better. The longer you have been infected, the longer treatment you will most likely need. Having co-infections can complicate treatment and make symptoms of all infections more severe.

    In my opinion, I don't think you can say that if you are not well in a 1 1/2 years then you do not have Lyme. It can take some time to recover especially if the infection is chronic. It is not easy going through treatment, but the good news is that Lyme disease is treatable. Slow progress is better than no progress.

    Good luck with your treatment!

     
    Old 02-15-2008, 09:56 AM   #3
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    Re: the lyme, fibro, cfs connection

    Thanks Ticker. I'm 4 days into treatment, so I suppose it's a bit soon to judge, eh? Lol...I do think the antibiotics are causing water retention, but other than that I guess I'll have to wait to see how I do. Lyme sure is one long, twisted road...

     
    Old 02-15-2008, 10:33 AM   #4
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    Re: the lyme, fibro, cfs connection

    Hi tiredpoet. Well four days in is four days closer to being done right? What meds are you taking?

    Twisted is a good word for Lyme!

     
    Old 02-15-2008, 04:38 PM   #5
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    Re: the lyme, fibro, cfs connection

    I opted to start with the tetracyline because I know how I respond to meds and I felt this was best for me. It's not too bad so far. I think I'm retaining fluid (which I hope goes away eventually!!) and I have some nausea right after but it's nothing I can't handle, meaning it's no worse than what I've been dealing with for the last few years. If nothing else lyme (or whatever it is) toughened me up, I guess!

     
    Old 03-01-2008, 09:56 PM   #6
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    Re: the lyme, fibro, cfs connection

    I worry about treating the wrong thing too. I was just diagnosed with clinical Lyme. Blood tests so far have been negative. It's been 12 years since my symptoms started. Was eventually diagnosed with Fibromyalgia/chronic fatigue syndrome, but after learning about Lyme Disease and it's similarities to these conditions, travelled to a different province to see one of the only LLMD's in Canada.

    I was bitten by something just a few months before I got really sick. I didn't see what bit me, but it was a very painful bite and resulted, a few days later, in a rash that looked more like a dark bruise with a clear center. But I don't know for sure it was a tick. Or that whatever it was gave me Lyme.

    But I'm so tired of feeling like I have the flu 6 days out of every 7 (the last 2 years my symptoms have been chronic-dizziness has been constant during that time) and am willing to try anything at this point. I'm on day 2 of Biaxin and Flagyl. So far, no worsening of symptoms. But I really HOPE that this will help. I have to fight feelings every day of ' what if this isn't Lyme and I'm unnecessarily taking something that could potentially give me a whole set of new problems'. Every time I get worried I come read on this board for a while.

     
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