I am new here. I have had Lyme for 12 years but just got a postive test - mostly that same long story all of us have been through.
The doc that ordered the tests told me up front that many docs considered Lyme a 'junk diagnosis' which I was prepared to hear but after it came back positive he won't treat me.
I already have really bad problems with my colon (diarrhea/nausea) so he says he wouldn't consider the large/long term antibiotics as they would cause colitis in someone that didn't already have that problem.
Any experience here that can help me?
Thanks in advance.
Posts: 19 | From texas | Registered: Jul 2005
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posted
I am thinking about starting a new journey in a lyme disease direction after having no luck with multiple test and Drs over many years. Here is my story, I was hoping you could let me know if it is at all similar to your:
My symptoms started about 4 years ago. Started with muscle twitching that eventually spread to entire body. There is virtually no place on my body that I don't get them. About 2 years ago I started seeing Drs. I had clean brain / spine MRI, clean EEG, clean EMG and nerve conductance test. All Drs thought I was crazy and kept telling me it was stress. I've also had a number of extrememly strange symptoms. I had pain in my testical for 2 weeks that went away with antibiotics (not sex related). My eyes will twitch really fast when they are closed, though I only know this from people telling me. About 1.5 years ago I started noticing coldness in my right foot. I have difficulty balancing on that foot and my right thigh is always tight. Over the past 2 weeks the coldness has returned and gotten more persistent. I also have experienced cloudiness with thoughts and memory over the past couple of months. These symptoms all come and go with great infrequency. I was convinced I had a neurological disease for a long time. This site has been the first place I have found other people with very similar experiences. Wondering if anyone out there has had similar symptoms?
Thanks,
Posts: 7 | From Central California | Registered: Sep 2005
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Wondering if your colitis/diarrhea could actually be part of your lyme package. In which case, abx would be necessary. Also, intramuscular and intravenous are not as hard on the gut, if the colitis is actually pre-existing condition.
You need to find another doc. Good ones are scarce, and many are not taking new patients. Your current one will not treat you because of the controversy surrounding lyme.
Posts: 8430 | From Not available | Registered: Oct 2000
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Sorry we both are stuck with trying to figure out our medical problems.
I get muscle tics at times, but think I always have so I wouldn't think that was Lyme (at least for me). My MRI had spots - don't know if yours being normal or my spots have anything to do with Lyme.
The brain concentration problems and loss of balance I do have too - and I do think it's the Lyme.
Posts: 19 | From texas | Registered: Jul 2005
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Thanks for your response. I agree with you - I think the digestive problems are part of the Lyme but you already understand how hard it is to convince a doctor of that!
And as frustrated as I am with doctors right now I have to admit that I am a little frightened myself as it has gotten really bad and I am afraid of inflicting further damage to my colon - I worry about dehydration already.
Posts: 19 | From texas | Registered: Jul 2005
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I get C. diff colitis if you look at me sideways. That's what your doc is nervous about I suspect. However, I just use vanco prophylactically (flagyl is cheaper and works well but I am personally allergic to it) when necessary and any time I get the runs or lower ab pain, we just do a c. diff test.
In short, vigilance/frequent testing and prophylactic meds can help deal with the possibility of C. diff colitis if that is a grave concern. I have personally made the choice to treat the Lyme disease that I have and be quite vigilant in dealing with the colitis.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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