posted
Back in December 2015 I got the chills, nausea and a migraine for 2 days. In the next week I had joint pain. Doc gave me steroids and pain killers and told me I had a virus.
A week later doc called back to tell me my Lyme test game back positive. When trying to get an ID appt, most docs didn't take me because my results weren't actually positive according to CDC. I needed up getting 2 weeks of doxy anyways.
6 months later: Still experiencing symptoms of what I believe to be lyme, but sometimes I question if I'm just being crazy. I got tested again and the ELISA came back negative. I am tired all the time, headaches all the time, occasional momentary pain randomly in my body, mostly on the right side.
This week out of no where I've had a constant neck ache, and a crick in my neck. I got adjusted and no relief. My knee is also hurting right in the middle of my knee- no swelling. Often times I feel very jittery- as if I had too much coffee.
I saw an LLMD last week and am back on doxy, and I am waiting for my test results from Igenex and about 100 other tests.
Mentally and emotionally, it's very difficult. I'm 23 and single, and this is very expensive and emotionally trying. What if I don't have lyme and it's just all random and not serious?
***If anyone has had a similar experience- I'd love your feedback.
***** Can anyone legitimize my neck or knee symptoms? How do I determine if the neck pain is a lyme symtom and not a normal neck thing like normal people? Any tips on relief for neck pain and knee pain? I'm already regularly taking advil for headaches.
Posts: 9 | From Marietta | Registered: Jan 2016
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posted
All I can say is make sure you have a good LLMD who will also test and treat you for possible coinfections. Lyme is NOT easily cleared in a few weeks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
It does sound very like Lyme, I'm afraid. The knee and neck pains are typical, as are the random sudden pains that may migrate . Do you know if the LLMD has tested for coinfections? Will your family be able to help with the finances? I do hope so.
As Lymetoo says,it is important to choose your LLMD carefully. Avoid takng any more steroids, which are contraindicated with Lyme.
Good luck and please let us know how you are getting on.
Posts: 1647 | From UK | Registered: Nov 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I agree that it sounds like a lingering infection, and it sounds v. suspicious for Lyme. You're doing the right thing going to an LLMD.
You are not crazy! It's not normal for a 23 year old to have all these symptoms. The ELISA test is total crap, so don't go by that. Almost all of us have been made to feel crazy by doctors who had no answers.
Ditto on don't take any more steroids. The ones you were given suppress your immune system and just make this harder to get rid of. Don't despair now.. many of us were in the same boat. Just don't take more.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That you say "Doc gave me steroids and pain killers and told me I had a virus." (end quote) is rather sad as no one should be given steroids if they might have ANY kind of infection - any kind -- but, especially if lyme might be on board.
But many of us here have been there, done that, and only found out later why we might have been so clobbered.
Sorry to hear of what you are going through. Good replies above. So that you have these details, going forward:
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. =
Posts: 48021 | From Tree House | Registered: Jul 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
You can check via microscope yourself ,there are no false positives ... you are on the right track
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
The CDC sets the bar too high - if you had a test come back positive in the beginning, that was a positive test. That, plus the symptoms you're describing - you need to be treating.
One of my earliest symptoms was a painful neck. I see a very good neck chiropractor who is able to relieve the pain. The chiropractor has to really know how to fix necks well.
I also used to be in a hot shower so much of the time to relieve the neck pain.
But there's more to the story. We need to be taking magnesium as well to relax muscles. You can use the Search function at the top of the page here and type in magnesium and archived threads will show up that you can read through.
Just know we're all different in how we respond to remedies and the trick is to find out what works for us.
For knee pain, I find that turmeric powder works really well to take down pain, not only in joints but also muscles.
I get it in bulk at the health food store and dip empty 00-size capsules into it and take a couple a day. I can feel it working pretty quickly.
Re feeling jittery - this could have something to do with your adrenals. Your doctor could check that out with you. Also perhaps do a thyroid check for TSH, T3 and T4.
And you will need to be treating Lyme, with your LLMD.
This is a marathon, not a sprint. But you are young enough and best to spend the time now and treat.
There's a lot of info at the top of Medical Questions, in the sticky Important Information about Lyme and Co-infections.
NOW A QUESTION FOR OTHERS ON THE BOARD HERE: when someone reports constant headaches, could that be an indication of the co-infection ehrlichia? I've heard that headaches can be a symptom. Or are there some folks here who get a lot of headaches with Lyme? I don't.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you all so much for your responses. It's nice to talk to people that understand the controversy around lyme. It is such a lonely thing.
I had my first appt with an LLMD a week ago, and my next appointment is in October when we will go over my test results. I do believe she also tested for bartonella, babesia, and ehrlichia. It's just a waiting game waiting for that appointment!
Posts: 9 | From Marietta | Registered: Jan 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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