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Lyme Disease
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Posted 10/8/2012 1:14 AM (GMT 0)
Hi,

I was diagnosed with Lyme disease last summer (2011) and am almost positive I didn't have Lyme very long (maybe a month?) before I was diagnosed, so it was caught quickly. I took two weeks worth of Doxcycline and told I was cured.

Over the winter I had a lot of trouble with fatigue so I went back to the doctors for a check up and they had no answer. Said it couldn't be the Lyme since I took the Doxycycline. I am thinking this bout of fatigue could possibly have been due to unrelated stress.

I have been feeling much better over the past few months until last week when a very annoying and painful burning/numbness/tingling feeling has taken over my body..mostly in my toes/feet/legs and fingers/hands/arms. The best way I can describe it is it feels like they are asleep all the time...pretty much 24/7. It is more extreme when sitting and laying down, and at it's absolute worst when bicycling, which is a big part of my life. I can't ride because of this due to pain and numbness. My feet go COMPLETELY numb after 5 minutes on the bike. During normal life, like laying down, my feet are partially numb, tingly, cold, but have some feeling at least. I am also feeling dizzy and lightheaded whenever standing.

I went to the doctor today and after being asked some questions and having a reflex test done on my knees and elbows (had NO reflexes) I was directed to go to the ER. When I mentioned to the ER doctor that I have (had?) Lyme disease, he immediately dismissed this as relevant information and asked "Do you even know what Lyme disease is?" and said that if I took antibiotics then I am cured for good. Maybe this is true, I am not sure. Something in my body isn't right, though. The ER doctor came to the conclusion (after two minutes of discussion with me) that I had hyperventilation syndrome...which is completely off. What I am feeling is not like this at all...it's a constant feeling, not just short bursts of panic and anxiety. Well, anyway, he sent me home. Told me to breathe into a paper bag. I got online to Web MD and checked my symptoms..something called "PERIPHERAL NEUROPATHY" kept coming up at almost 100% possibility. The symptoms are spot on and sure enough one of the most likely causes is Lyme disease.

Well, my question is. What do I do next? EVERY doctor I go to says I can't do anything more with Lyme disease and that if I took the medicine when diagnosed then I'm fine. Something is really wrong with my body right now..as I type this my fingers are burning numb and it is shooting up my arms. Is there a possibility that Lyme is still affecting me? Is there anything I can do? I just don't know what to do right now.
Posted 10/8/2012 2:53 PM (GMT 0)
Hi kjbike - welcome to the forum! I am so, so sorry you've been given the same runaround so many of us go through - that famous line, "if you took doxy you can't have lyme anymore" is SO untrue! There has never been any evidence whatsoever that a short course of a single antibiotic is effective in eradicating this infection, and a lot of us have found our way here because we were treated inefficiently and developed months-years worth of symptoms that we're constantly told couldn't possibly have anything to do with the lyme!

Your next step would to be to find a LLMD (lyme literate medical doctor) - they are specially trained in diagnosing and treating (and understanding) these infections. You should start a new thread entitled, "Looking for LLMD in ___________" to find a doctor in your area - please make sure your email address is available through the profile section so our members can send you personal recommendations.

In the meantime, please look through our "New to Lyme?" thread. There's plenty of great information there put together by our members here, including information about detoxing, which will help to alleviate some of your symptoms.

I'm sorry that you have to go through all of this, but I hope we can help! We're here for all the support and resources you need. Best of luck!
Posted 10/8/2012 3:30 PM (GMT 0)
KJbike,

Wow...it definitely sounds like lyme to me and it just makes me so angry that we get the response that we do when me mention "lyme disease". I would find an LLMD and started getting treated properly.
Posted 10/8/2012 5:05 PM (GMT 0)
Yes it sounds like lyme to me, and when I was told I had it 09/11/2012 I am taking the doxy for 3 months, because my doctor does not feel two weeks is enough time. I may be taking it longer than that, because my lyme has affected the left side of my body by 20 Percent. I would find a different doctor and demand treatment before it gets worse.

I have the burning sensation, the intense pain, the numbness. I don't think two weeks of medication is going to cure a person, I am not a doctor, but if you look it up on the Mayo clinic is saids that longer medication may be necessary.

just me.
Posted 10/9/2012 12:20 PM (GMT 0)
I saw my bullseye and actually pulled the tick off from the spot where my bullseye appeared. So i went to a local doctor who said oh crap you have lymes. Then gave me 2 weeks of antibiotics and I felt great for many years or so I thought. 5 years later it roared back with a vengeance and now is way out of control.
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