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Severe joint pain - getting worse

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Posted 2/5/2012 1:48 PM (GMT 0)
Hello!
I've been treating for over a year with an LLMD that I love....however I'm getting worried. I have been CDC positive since day one, also a positive ANA w/high titer & lupus/sjogrens markers. No one in my family has autoimmune. I'm worried that since my joint pain is spreading how do I know its not just Lyme? It seems like every month another joint starts to hurt.....is this normal? Shouldn't these pains get better with treatment? At first I thought it was a herx or Lyme flare, now I'm beginning to wonder...and I don't know of any Lyme-literate rheumatologists. Any thoughts? Thanks :)
Posted 2/5/2012 2:38 PM (GMT 0)
Hi JayDee, are you watching what you are eating and detoxing? I found that staying away from diary and sweets made a big difference with my joints. They are both inflammatories. Also, are you detoxing? It is crucial to make sure you flush out the toxins. Have you made any progress at all with your LLMD? What treatment are you on? Maybe it is not strong enough.
Posted 2/5/2012 2:46 PM (GMT 0)
Hi, yes my duet is VERY strict. No sugar, gluten, dairy, soy or inflammatory foods whatsoever. I'm also detoxing often, daily. I have made a lot of progress with my Dr but the joint pain is getting worse....he says I'm going through a herx and maybe so but still concerned...
Posted 2/5/2012 4:25 PM (GMT 0)
Have you ever had any joint x-rays to see what is going on? Personally I would probably see a rheumatologist just to get another opinion, but let them know what treatments you are on for Lyme. It is possible you are herxing, but if it gives you peace of mind to have it checked out by a specialist to confirm whether something else is going on, it may be worth it. I don't agree when doctors say that any increased symptom is a herx, as it is certainly possible to have co-infections or another problem in addition to the Lyme.
Posted 2/5/2012 5:50 PM (GMT 0)
My joints tend to get worse when I'm herxing really badly - it actually feels like toxins are settling in my joints and irritating them.

Lyme disease can cause autoimmune issues, though, so if you're concerned that it's more than Lyme going on - see a doctor - if you can find a Lyme-literate rheumy that would of course be ideal.

On another note - what kind of treatment are you doing? Obviously it's up to you and your doctor to decide what medications are best for you, but I figured I'd at least throw this option out there - my sister has UCTD (which is like lupus) and has been doing extremely well with plaquenil. I have Lyme (obviously) and just recently switched to plaquenil (along with doxy and ceftin) for my cyst-buster - and it seems to be working pretty well for me as well. I have a lot of autoimmunity issues going on in my body - so part of me wonders if I just lucked out with a cyst-buster that also gets rid of some inflammation! Might be an option worth considering.
Posted 2/5/2012 10:48 PM (GMT 0)
Lyme arthritis is one of the gifts that I have been graced with thanks to my infections. eyes It acts just like Osteoarthritis, damaging joints and the inflammation, but it doesn't have 'markers' like Osteoarthritis that show up in blood work. My fingers and toes were twisting and bowing like I had advanced Osteoarthritis! Some of that has gone away with treatment, but once the joint has been damaged, it's damaged.

If you've hit a plateau in your healing and you are detoxing (including using the detox baths described in our "New to Lyme?" thread), then other tick-borne infections need to be considered. They usually stop progress in a person's Lyme treatment. Another thing, has your doc switch abx in your treatment? That might be another option that could be tried to 'jump start' your healing again.
Posted 2/6/2012 3:02 AM (GMT 0)
I have been taking serrapeptase for the last year and it's made a huge improvement in my muscle and joint pain. It eats inflammation and for me, has been a miracle. It might help you too. My LLMD had no problems with me taking it, but you probably would want to run it by yours. If you try it get the enteric coated and always take on an empty stomach.
Posted 2/6/2012 11:05 AM (GMT 0)
The herb Nettles (leaf, not the root) is excellent for any type of arthritis, it helps me alot with my Lyme/Lupus related migratory joint pain.
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