posted
I just returned from my doctor to go over labs (all EXCELLENT for once with the exception of a slightly above average LDL)including labs that he ran for RA.
I have been having some pretty gnarly joint pain for the last 8 weeks along with general malaise and fatigue(different from my regular occasional herxing).
My hands have been hit hard.
Joints are swollen and enlarged, fingertips red, hands painful, and my feet, large joints, have been so sore it has been painful to walk at times.
My RA testing was all negative. Frustrating.
I still have a nodule present on one knuckle of my left hand.
I asked the doctor what was going on. My hands have obviously undergone changes and a bad flare yet all my labs say I'm in good shape.
He said that over a third of early RA sufferers have normal labs. That it could still be early RA, it could be osteoarthritis and then I asked him if it could be a form of Lyme arthritis given my history with Lyme.
He said yes, it could be even though I have been pretty well saturated with antibiotics. (Currently on Flagyl for antibiotic related gastritis)
Has anyone else experienced this? Is this normal progression Lyme?
I was bit in 08 and had a mild positive test in 09 but had THE rash and symptoms so was treated like a positive.
I have been on antibiotics since then. Had another bite last spring that left me with a bad flare of neuritis/herxing and was put back on doxy for 8 weeks.
Basically have been doing well till this joint flare.
It's frustrating to have normal labs and look at my hands and see an old woman's hands on a body that isn't THAT old.
It's more frustrating to be in pain all the time and have bad reactions to all the anti-inflammatory drugs that could help me.
I'm using Kali, arsenicum and I am starting on cherry juice.
I have been advised to keep my hands warm, but think I'm doomed to just riding this flare out and living with decreased hand and finger mobility.
Is this a another Lyme Experience?
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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posted
It's all too familiar to me - except my RA tests are positive.
Posts: 707 | From Colorado | Registered: Jul 2010
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
did this start after you began the flagyl? flagyl is supposedly a powerful cyst buster. one possibility is that you had lyme left over in cysts, and that the flagyl is causing them to become active again.
you can try NOW brands Boswellian/tumeric along with MSM to help reduce inflammation. Not a miracle cure, but it does help some
when you say you had "babd" reaction to antiinflmatories, what happened?
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
You might want to ask for advice over at www. roadback.org
That board is for people using antibiotics for arthritis. Some have RA and some have Lyme. Some have both. They can also point you to a doctor in your state.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have read borellia does not attack your joints bilaterally. It attacks one knee or one arm. That is the way it begins anyway. Currently I have mild attacks in one knee and one finger. The co-infections cause pain on both sides of the body.
But lyme can bring on autoimmune diseases. I saw a video showing how borellia changes it's protein coat and attaches it''s old one to the cells of the body to trick the body into attacking itself.
Low Dose Naltrexone is extremely good at halting autoimmune diseases like RA. I just started it again this morning. It stimulates/regulates the immune system and is also very helpful for treating lyme disease. It is very safe, well tolerated and cheap.
The only side effect is disturbed sleeping during the first couple of weeks of adjustment, but you can take it in the morning to avoid that problem, and then switch over to evening later. Goggle it for more information.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Amanda, no, the flare started about 6 weeks before I started flagyl. It was actually slightly better when I went back on flagyl.
I have a history of rheumatic fever and have experienced flares before of joint pain, but this one was different and by far the most severe.
I had bilateral pain in both hands, same finger joints and in both feet, same joints. Today the ends of the fingers on my right hand are red.
I developed a prominent nodule on the middle joint of my left middle finger. It has decreased in size but is still there.
I looked and felt like a wrung out washcloth. VERY tired even after a good nights sleep.
The GI problem started after Thanksgiving.
GI upset, indigestion, lots of gas, acid reflux, sore mouth and tongue.
Held ABTS and took a short course of Flagyl I had on hand. Felt some better.
Went to doctor today and he wanted me to continue the Flagyl TID for 10days before resuming ABTs.
Yep, I know about the cyst buster Flagyl and am braced for it. BRING IT ON!!!
I try to be positive. If the cysts are rupturing and I'm herxing that means more buggies are dying and I will eventually feel better.
I get severe gastrointestinal upset with a lot of anti inflammatories. I can take short courses only before the 'fun' begins.
I'm thinking I need to get back on the Doxy over the winter months but Doctor wants me to go back on Augmentin. Think we will have a talk in ten days.
No Plaquinel for me. I have eye issues already and have been told NO GO by both DH who is an optometrist and by my self appointed LLMD.
I use prescription pain medicine and lots of hot soaks. The latter really helps the pain.
I just hate what is happening to my hands.
I can't open cellophane bags anymore, or open twist top bottles. It is really humbling to have to ask my husband to open them for me when we are at a restaurant.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
You should also be taking Alpha Lipoic Acid for the neuropathy. It removes toxins and is a very powerful antioxidant. Diabetics use it for neuropathy.
Make sure Flagyl is not causing a problem. Look at side effects at drugs.com
Consider co-infections too. It is a big mistake to keep on treating borellia when you are getting worse and worse - blaming it on a herx. It is probably a co-infection coming out that does not respond to the medication you are using.
The infection being attacked by the meds you are on will go underground allowing the others to emerge and take over. That is one reason treatment is so difficult. You have to address everything and people are always in denial about the co-infections, believing they only have "lyme" - borellia.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Until I had the sudden onset of joint pain I was feeling pretty good.
Until I had the encounter with Bart in June, I was in complete remission for almost a year.
Doctor thinks Lyme has made co-infections opportunistic for me and made me have a pronounced reaction to exposure.
I've been on Flagyl for 24 hours now. So far so good.
GI symptoms have settled down.
No herxing....yet.
Joints are having a good day today.
Hopefully the flare will settle with the treatment of the gastric problem. Maybe they are connected. Dunno.
Thanks for the tips about the LDN I will look into it. Doctor has mentioned using Lyrica for my neuritis but I would rather go homeopathic whenever I can.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I tried to read through everything to see if anyone suggested these. I didn't see it, so forgive me if I missed something...
I have bad (lyme) arthritis - diagnosed 18+ years ago as chronic reactive arthritis. Just found out last year it has been Lyme and Bart all along.
I have been taking grape seed extract for 15+ years and this helps me with the inflammation, redness, swelling, pain, etc.
Recently, my LLMD suggested I go on the Buhner herbs from "Healing Lyme" One of them is Japenese Knotweed. Since I have been taking that, I don't need my grape seed extract anymore. Which is good because it was rather expensive.
My cost to stay pain free went from $500 a year down to $100 a year!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Thanks Momlyme, I use Vitacost and just put an order in. Blessedly, my doctor is supportive of complimentary medicine and is alway recommending a new list of herbal remedies for me to try.
Day 3 of Flagyl and still no herxing. Hopefully getting rid of the yeast infection is a step in the right direction. My joints are settling down slowly but I could really live without the stiffness.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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