Thanks so much for this forum. It's been amazingly helpful to me.
Diagnosed a few months ago after feeling not good all summer. Main symptoms were shakiness, ribcage and chest pains, palpitations, hip and elbow pain (which for months I had just chalked up to over exercising)and overall just not feeling right. Don't recall getting bit, had no rash. Best guess is that I had it 3 months before diagnosed. Here's the quick lowdown:
Diagnosed CDC positive via WB PCP put me on the usual 3 weeks 200mg Doxy Went to LLMD, he put me on 400mg DOxy and Plaquenil Been on this dosage for a total of 7 weeks
Felt worse almost immediately when starting meds and haven't really gotten any better.
Shakiness and rib pain come and go sporadically (they always did even before diagnosis) and are diminished but arthritis has only gotten worse and I see no real improvement there. Constant tendonitis in my elbow, stiff knees, stiff and painful neck.
Thought the increase pain was a herx at first and that was a good sign but now I am beginning to wonder if the doxy just isn't working. Or is it possible to just herx ongoing for weeks without any incremental improvement?
I know I'm probably just being impatient but somehow, I thought by now, in between herxing, I would feel some sort of relief or improvement.
Going back to LLMD soon.
Any opinions would really be appreciated!!!
Happy Thanksgiving To All.
Posts: 14 | From Ticksville, USA | Registered: Nov 2008
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bettyg
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posted
welcome and happy thanksgiving back!
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bettyg
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posted
welcome; you will not notice major improvements SOON; it's rare if it happens that way. you need to develop PATIENCE as lyme has it's own time frame and we can not speed up.
nice, detailed post and wonderfully broken up! thanks
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
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please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
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now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
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we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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That being said, not to discourge, just for comparison and my reality. I'm almost 9 months into tx with slow/little improvement. Mind you, I tested + for ALL co-infections too and was infected for more like 3 years.
I have most all your symptoms and then some. I try to remain hopeful that I'll see results and I hope you will too, everyone talks about patience. It's hard and very frustrating. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
You might talk to your LLMD about using some Tindamax on the cyst form (it's a second generation Flagyl with fewer side effects).
You're going to probably need to be on some sort of antibiotic for quite a while. Many LLMDs want to treat for as long as you have symptoms plus 2 months. Definitely get something more effective on the cyst form asap.
Have you had any Vit-D level testing done (both -25 hydroxyl and 1.25)? If you're low, you may benefit from Vit-D supplementation. My LLMD was saying that he believes Lyme is primarily an inflammatory disease and that it causes tissue inflammation - thereby reducing -25 hydroxy levels. He uses the -25 hydroxyl levels as a rough indicator of how much inflammation in the body is present - indirectly how much Lyme is present.
Posts: 131 | From PA | Registered: Aug 2007
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posted
One thing I forgot to add is that I did get tested for coinfections and I was negative. But my LLMD, in the same breathe, also told me that it doesn't necessarily mean that I don't have them!
Thanks for all the replies so far. Appreciate the feedback! Guess I'll to be more patient. Posts: 14 | From Ticksville, USA | Registered: Nov 2008
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posted
Well you still could have co-infections because there are many more sub-species/variants of the co-infections than the current testing can detect.
Seems it's not profitable enough to devise new tests since these diseases are so "rare" (sarcasm).
Posts: 131 | From PA | Registered: Aug 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Lyme and coinfections take time to treat especially if infected any length of time. Hang in there its hard.
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welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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