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New to Lyme & so overwhelmed.

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Posted 9/10/2013 6:15 AM (GMT 0)
First off - thank you to those that compiled all of the information if the "New to Lyme?..." thread. I read it start to finish. Lots of great information.

However, I am still really overwhelmed and unsure of myself. I am new to the world of Lyme Disease and trying to figure out what my next step is - looking for some guidance or reassurance.

In June I developed what I thought was light food poisoning - fever, fatique and diarrhea - for a few days. I was on a cross country road trip at the time and had been camping at Zion in Southern Utah. about a week later I developed severe pain in my right hip and left shoulder. Over the next several weeks the pain subsided but new pain and swelling developed in my right ankle, left foot, both knees (starting with one, the other followed about a week later) and right wrist. These symptoms sort of "settled in" at this point.

I was sweating in my sleep at lot during this time but that symptom has subsided. I tested negative for RA and Lupus but my SED rate was elevated. Treated with 3 weeks of doxy. My Dr. guessed Lyme but I didn't take the standard test until 2 weeks into my abx due to financial concerns. I have yet to see the results myself but was told my antibodies were "slightly elevated" but the western blot returned negative. Now my Dr. says I don't have Lyme, prescribed steroids, referred me to a rheumatologist and sent me packing.

I have had it in my head for the last two months that I have Lyme Disease. My worry is that it may be something else - my father has both RA and Ankylosing Spondylitis. Perhaps I am seronegative for RA? Money is a huge concern for me - I am living off of meager savings and am without a job. I have been recommended a LLMD but am really frightened by the cost of treatment - this one charges $750 for an initial appt. I am really hesitant to proceed for fear of finding out this isn't Lyme afterall but bankrupting myself in the process.

I am so overwhelmed! Does anyone have helpful advice or guidance? Surely someone has been in the situation before. Not having any solid answers is really hard.
Posted 9/10/2013 7:46 AM (GMT 0)
I'm new to this too, but I can try to help a little, and others will probably pick up the slack.

First you should not take steroids if you think you have Lyme. I don't know the specifics, but I've read it can have bad consequences.

The standard tests from your Dr. are often wrong, and even if they do catch a positive, most md's and infectious disease dr's don't treat it right. For proper testing you should use IGenex. You can order a kit, or find someone near you that offers it(we have a chiropractor by us who does it). It's not cheap(260?), and usually not covered by insurance, but it's more accurate. Even with the better testing, it is still possible to have a false negative, so Lyme should be a clinical diagnosis(what your Dr did in the first place).

An experienced LLMD or LLND, although expensive, is probably your best bet if you believe you have Lyme(IMO). If that's what it is, it's been my experience, that you will bounce from Dr to specialist spending a lot of money, and wasting healing time for no answers, only to end up at the LLMD anyway.

This disease gets harder to treat the longer you have it, so if you think you have Lyme, you should try to sort it out as soon as possible. Hopefully this helped some, and others will chime in with more info. This is a great forum for support and knowledge, so you'll learn a lot by hanging around. :).

Good luck with everything, I hope it all works out for the best for you.
Posted 9/10/2013 10:52 AM (GMT 0)
I agree, DONT take steroids unless you know its not lyme!

two years ago I was dealing with the same symptoms as you. then after a couple of weeks of steroids.....WHAM! super sick ever since.
Posted 9/10/2013 4:29 PM (GMT 0)
Oh Wonderskirt my heart goes out to you. Trust yourself. Why do YOU think YOU have Lymes disease? I think there has to be more to it than just a hunch if your on this forum. You know yourself. Now get to a Lymes Doctor pronto. The $750 will be well worth it when you save the quality of your life. The other side of the coin is how much you could spend on misdiagnosis. I spent thousands. And still had to fork over more to the Lymes specialist. Your solid answer I fear will only come from yourself however. That's how it is for me. If you are a critical thinker it is going to be difficult to rely on one human being (the Lymes doctor) to manage and educate you through this. But you do need the help in managing and educating nonetheless.
I'm right here with you on the financial thing. That's why my advice is to go the Lymes doctor. You do not want to end up spending every cent you can find and still not have any answers, and still think you might have Lymes disease. I'll be hoping and wishing you find the answers you need, and that you feel better.
Posted 9/10/2013 4:36 PM (GMT 0)
Hi Wonderskirt,

I agree with the others - please get to the LLMD! I know it's expensive, but with swift action you will save years of your life.
Posted 9/10/2013 6:40 PM (GMT 0)
I second what everyone else has said. I have spent so much money and time on symptoms that keep cropping up when all along I should have been treating lyme and seeing an LLMD. With every symptom comes a different set of tests and a different specialist. Of course, no one could ever find a cause for all of my problems! So save what money you have and see an LLMD!
Posted 9/10/2013 10:18 PM (GMT 0)
Ditto what everyone has said. My daughter and I have had it for a long time and we wouldn't have if it had been diagnosed at the start, whenever that was.
Posted 9/14/2013 5:11 AM (GMT 0)
thanks so much to all of you. you're right - i need to see an llmd. it is so difficult to know, instinctively, what is going on and then to be jerked around and told differently from an uninformed doctor.

so grateful to have knowledgeable and supportive people in these forums!
Posted 9/14/2013 10:18 PM (GMT 0)
Wonderskirt, it is overwhelming isn't it. I agree with others. I have read that steroids is not what you should be taking if you have Lyme. Many doctors are misinformed about Lyme so it's important to use one who is lyme literate. It's also important to do your own research. This is how I found out how these infections can mimic so many conditions. I also agree that you want to get treatment as soon as you can. Lyme is not something to fool with.
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