posted
Like anyone with Lyme, I stay away from steroids like the plague. So please no "throwing tomatoes"!
However, my lyme & co's have triggered rheumatoid arthritis, which has become so severe, so fast, from a Bartonella herx (rifampin, mino, and zith) that I have no choice.
Both my LLMD and rheumatologist agree I need a short course of prednisone to halt the major joint destruction, cartilage tears, anemia of chronic disease, and inflammation that will not go away. My CRP & sed rates are so high my dr's are "extremely alarmed".
After the 5 day prednisone I'll go back to my Bartonella treatment. I've also added Celebrex to try to keep the inflammation down. Diet, supps, and ibuprofen do nothing to help.
Anyone here who has had to do something like this? Both dr's agree I'm going to end up with widespread permanent damage.
posted
Good luck! I'm scared that I might get to that point too - I have very bad arthritis that has been slowly getting worse. My CRP and Sed Rate are chronically high too.
Celebrex helps with long term maintenance, but it still flares for me.
I don't have any experience further than that, but am interested to see the replies, b/c it may affect me in the future.
Posts: 173 | From Washington, DC | Registered: Oct 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ibuprofen constricts blood vessels and that can lead to a lot of kidney stress and a back up of toxicity - and more pain and inflammation. It's just something to consider. Detail here:
Be sure you have liver and kidney support on hand and that it's comprehensive. See the magnesium detail, too.
AND how take when absolutely necessary - that is detailed here, too. So scroll down to that part -- if the LLMD is ILADS educated and is covering all the bases for a short coarse, that is the key. It sounds like you have the bases covered (but I am a bit hesitant to work with any doctor who thinks ibuprofen is okay).
Still, I wonder if there might be some other approach. I have found BERBERINE to be a tremendous help with the issues you describe.
BERBERINE – LINKS SET -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention anemia. Have you been assessed for Babesia? Are you taking Stinging Nettle? That really helped pull anemia out of the gutter for me.
But, if you have babesia and it's not been fully addressed, that could be the anemia issue. Also methylation issues with B12 that are common with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stinging Nettle reminded me of Gotu Kola (and that's very good for circulation).
STINGING NETTLE LEAF (not root) - Links set - Note the action against a cytokine storm & the note about it helping for those with RA.
It really reversed anemia for me. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, of course you may decide to go ahead with the prednisone (and maybe consider the other options from there on?) . . . but if you do the prednisone, please be certain that you are fully covered with ADRENAL SUPPORT so you don't have a drop / upset afterward in that regard.
The prednisone can last in your body for six months so be sure you have "full coverage" for all considerations even past the point the prescription is done.
ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- CarolinPA has often posted about this. Many Physical Therapists now have similar units. I would hope that's been offered to you. Best if you could have your own unit at home, of course but price can be a roadblock. Still, this is a very important tool to help with deep circulation:
Sota Lightworks - Pulser -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Please consider trying the Autoimmune Paleo diet. If you follow it completely you could see a major improvement in your symptoms. I am feeling sooo much better!
Posts: 1748 | From United States | Registered: Dec 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Have you read Doc H's new book yet? It might give you some direction. Hopefully you are gluten, sugar and dairy free. If not, there is a big part of the problem.
Also, allergy testing might help. I was tested a few years ago, but some of it changed in just one year, so it's good to get re tested. I had no obvious signs of the things I was allergic to, but my doc said to eliminate them from my diet (inflammatory).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I had to go on steroids about 6 weeks back due to allergic reactions. I'm well aware of the negative effect of steroids on Lyme as taking them before diagnosis was a big part of why I ended up so sick. So I was very, very wary but when you are in the ER with an allergic reaction, what are you going to do?
I was scared that everything was going to come roaring back and that I'd be bedbound again like I was when Lyme and co first hit. I'm not. I felt great while on them and the effect lasted for at least a couple of weeks. Which confirms for me that I have a huge problem with inflammation.
I do HIGHLY recommend that you don't stop taking the steroids abruptly but take a tapering dose to ease off of them. Healthy people can probably handle an abrupt stop if it's just a short course, but not Lymies - we are much more sensitive.
The downside was it did stir up problems with my adrenals and dysautonomia again so I'm having to work on those all over again. So it would be good to expect that and have a plan in place.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Stephen Buhner recommends Japanese knotweed for inflammation. He says that if you don't take anything else for lyme, take knotweed. We found it better than ibuprofen for addressing the brain inflammation associated with PANS/PANDAS. We aren't dealing with arthritis though.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
WPinVA .. I agree that in life-threatening situations you do what you have to do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Laurie/FamilyFive, you are being advised by your LLMD and Rheumatologist to take the steroids. They know you the best. I hope that they prevent the further damage that they are so worried about. And that your pain resolves some.
We do what we have to do. I always read people with Lyme saying "never take steroids!!!". Well, I say never, say never! They are not physicians and don't know the individual cases.
Off my soap box now. Hope you are doing OK with them. Especially the nervousness and insomnia it can cause. Hang in there!
Posts: 1685 | From Maine | Registered: Jun 2004
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Finishing the steroid pack today. Started Celebrex. Between the 2, my pain is down to a bearable level (except at night). At night, well, everything flares and my pain is a 10. Dr's say this is due to the inflammation.
I'm going to add Berberine and try Wobenzyme, based on the feedback and Keebler's info. I also have major hand/finger/wrist pain.
I was on babs treatment for 2 years. Was stable, but symptoms all came roaring back after a "crash" in August.
Not on anything for babs now as I'm starting bart treatment (bc I herx so badly). My symptoms have a lot of cross-over so there's no clear diagnosis for either. Inflammation, joint pain & swelling, night sweats, chills/flu-feeling. At times brain fog, forgetfulness, fatigue. That said....
I'm very worried about going back on my bart treatment. If I herx badly again my joints may not be able to take it. I can't believe the damage I've had so fast. I'm going to try more detox and pray that it helps.
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
How about changing your diet? I couldn't believe how much my symptoms decreased.
Posts: 1748 | From United States | Registered: Dec 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Dexamethasone is much more potent.
Google: Dexamethasone MS
(As in multiple sclerosis)
Not ideal, but I do understand.
Humira HELPED, but did not cure my sis. Steroid shots (x2) directly into her eyes CURED her lyme induced uveitis - she WAS going blind.
Getting inflammation down (bigtime) WHILE hitting Bb looks to be the "key".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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