posted
Long story short - got Lyme around 2002, struggled with symptoms and many doctors until I crashed hard in 2011 and was finally tested. Tested positive Western Blot. Lyme, Babs, and Bart. A year later after multiple rounds of doxy and other combos condition continued to get worse so had a PICC for nine months. Big improvement, could talk again, pain was gone, could function, returned to work, moved to California from NH,
A few lingering symptoms mostly fatigue, poor memory, and sugar still makes my feet burn. I was fortunate it never attacked my joints. I consider it a success story. Doing my best to avoid relapse.
But three times in the past year (since we moved) my left knee swelled up like a grapefruit. First two times went away after 3-4 days. This last time was much worse. Pain was excruciating, knee warm to the touch. Still can't walk.
Went to ER last Monday. Nervous because Lyme not common here so don't expect knowledgable docs but no idea if Lyme has anything to do with it. X-Rays normal. Didn't see a doctor, only Nurse Practitioner, tells me to call ortho and gives Rx for vicadin.
Go home, call ortho. Four day wait. Go in, drains a full 20 cc from my knee. Damn that hurt. He's convinced it's Gout, dismisses Lyme, sends fluid for cultures. He's shocked ER didn't take blood samples so sticks me again for blood. Rx Ibuprofin and Naproxen, need to return next day,
Next day only partial test results are back. Negative for infection. Ortho still thinks it's gout. Gives referral for five weeks PT. I go visit primary doctor to give update, he says I have no risk factors for gout, thinks I aggravated an old injury. Go home, spike 103.8 fever at 2:00AM, finally breaks at 9:00AM.
Yesterday (yeah, on a Saturday) ortho calls and says cultures negative for gout so far. I tell him about fever, he's alarmed, says I should have called an ambulance for IV abx at ER. Fever broke so says go to ER if temp hits 100. It hasn't. He calls in Rx for keflex.
Ortho calls again this morning, says cultures final, no gout no infection, is unusual so doesn't know what to think. He's sticking to gout anyway, calls in Rx for Colchicine. Again dismisses Lyme or injury (which would require MRI). Appt to see him Tues.
So, does anything stand out here that with points to, or eliminate Lyme as the culprit? I remember reading somewhere that if Lyme related won't get fluid from knee but not sure if true. He wants to dismiss it and to be honest I hope he's right. I'd rather deal with a simple knee flare up than lyme arthritis.
Still swollen but much better since it was drained. Pain much better too. Can't bend my knee but that'll come in time. Any advice appreciated. Thanks folks.
Posts: 99 | From Cali | Registered: Dec 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Yes, lyme! Lyme LOVES the knees. Your lingering symptoms scream lyme and company.
I originally got lyme in CA. The regular docs there are just as stupid as the ones on the east coast. You need to see an LLMD or you will just waste your time chasing syndromes, conditions, etc, and your lyme will continue to get worse.
-------------------- --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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey southpaw, nice to see you again! Sorry it is because you are having troubles and pain. May you find relief soon.
You said... sugar still makes my feet burn.
May I suggest not putting sugar on your feet anymore.
Ok. Really. Bottom line, your ortho is not helping you, other than ruling out a few things that it isn`t. I`ve gone broke and suffered too long playing with dumb ducks to do that again.
You have one, that in spite of negative tests, still wants to hang onto their own wrong diagnosis. Dump the duck.
You can get fluid from the knee if it is Lyme. Most of the old literature talks about how badly swollen knees can be and in fact, Lyme was considered for years to be ONLY a tick bite, a rash, and a swollen knee.
Bumsteere is still trying to prove after looking at it, the knee fluid is pointing to an immune dysfunction, blah, blah, blah in Lyme patients, but I don't think he has convinced anyone with half a brain yet.
Med Clin North Am. 1997 Jan;81(1):179-94. Diagnosis and treatment of Lyme arthritis. Steere AC1. Author information
1Department of Medicine, Tufts University School of Medicine, New England Medical Center, Boston, Massachusetts, USA.
Abstract
Lyme arthritis typically causes intermittent attacks of oligoarticular arthritis in a few large joints, especially the knee.
A small percentage of patients may develop chronic arthritis, again affecting primarily the knee. The diagnosis is usually based on the presence of this characteristic clinical picture, exposure in an endemic area, and a positive IgG antibody response to B. burgdorferi determined by ELISA and Western blotting.
In addition, spirochetal DNA can often be detected in joint fluid by PCR. Joint involvement in this infection can usually be treated successfully with a 1- or 2-month course of oral doxycycline or amoxicillin, but patients with certain genetic and immune markers may have persistent arthritis despite treatment with oral or intravenous antibiotics.
If patients have persistent arthritis despite a second course of antibiotics and if the results of PCR testing are negative, the author treats such patients with anti-inflammatory agents or arthroscopic synovectomy.
High levels of inflammatory chemokines and cytokines in joint fluid and synovial tissue throughout the course of antibiotic-refractory lyme arthritis.
Shin JJ1, Glickstein LJ, Steere AC. Author information
1Massachusetts General Hospital, and Harvard Medical School, Boston, Massachussets 02114, USA. [email protected]
Abstract
OBJECTIVE: To investigate the possible role of chemokines and cytokines in the pathogenesis of Lyme arthritis.
METHODS: Using cytometric bead array and flow cytometry techniques, chemokine and cytokine levels were determined in 65 synovial fluid (SF) samples and 7 synovial tissue (ST) samples from 17 patients with antibiotic-responsive Lyme arthritis and 35 patients with antibiotic-refractory Lyme arthritis seen during the past 18 years.
In the ST samples, expression of chemokine receptors was measured using immunohistochemistry.
RESULTS: Before or during antibiotic therapy, when the majority of patients had positive polymerase chain reaction (PCR) results for Borrelia burgdorferi DNA, SF from patients with antibiotic-refractory arthritis contained exceptionally high levels of Th1 chemoattractants and cytokines, particularly CXCL9 and interferon-gamma (IFNgamma).
Compared with the patients whose arthritis was responsive to antibiotic treatment, those with antibiotic-refractory arthritis had significantly higher levels of CXCL9 and CXCL10 (both P or=0.001) and CCL3, CCL4, CXCL8, IFNgamma, tumor necrosis factor alpha, interleukin-1beta (IL-1beta), and IL-6 (all P or=0.01).
During the post-antibiotic period, when the results of PCR for B burgdorferi DNA in SF and ST were uniformly negative, patients with antibiotic-refractory arthritis continued to exhibit high SF and ST levels of these chemokines and cytokines.
In addition, synovial samples showed marked expression of the receptors for T cell or macrophage chemokines, CXCR3 and CCR5.
CONCLUSION: Patients with antibiotic-refractory Lyme arthritis have high synovial fluid levels of proinflammatory chemokines and cytokines, especially CXCL9 and IFNgamma, throughout the illness.
Thus, even when antibiotic treatment reduces or completely clears the infection in these patients, the inflammatory response in synovium persists.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Southpaw, I know how desperately you don't want this knee thing to be Lyme related. Been there, done that. I think it is one of, if not the most distressing thing to think about throughout the whole Lyme experience, when symptoms start creeping back.
I am not saying it is Lyme, however, you do need to take a serious look at the possibility.
I would like to see the results of the tests, blood, that were done and not depend on the duck to report them back to you accurately.
If you can get a copy at your next duck visit on Tuesday, it would help YOU figure out what is going on. If you need help with that, just ring our bell little darling, just ring that old bell.
And if you change docs at some point, having a copy of the most recent reports would be a good thing.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Quote from another article... notice the percentages in the first sentence of this 2o14 study.
We identified 384 children with knee monoarthritis, of whom 19 (5%) had septic arthritis, 257 (67%) had Lyme arthritis and 108 (28%) had other inflammatory arthritis.
Children with other inflammatory arthritis had lower synovial WBC and absolute neutrophil count, as well as percent neutrophils, than those with either Lyme or septic arthritis.
There were no significant differences in the synovial fluid WBC, absolute neutrophil count, and percent neutrophils for children with Lyme and septic arthritis.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Instead of injury, Quote from a 2oo8 article...
Common systemic, inflammatory causes of these musculoskeletal complaints include ankylosing spondylitis (AS), gout, chondrocalcinosis, psoriatic enthesopathy and early rheumatoid arthritis (RA).
Quote... In athletes presenting with peripheral arthropathy, it is mandatory to investigate autoimmune arthritis (AS, RA, juvenile idiopathic arthritis and systemic lupus erythematosus), crystal-induced arthritis, Lyme disease and pigmented villonodular synovitis.
posted
FYI, gout can be caused by a diet that's too high in purines. You can google for it. People eliminate these foods and start to feel better if that is the connection.
Knowing us, though, it's probably the Lyme. Turmeric works well, also lymph drainage massage can ease the pressure in the knees.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thanks everybody. And Tincup thank you so much for all the information.
yeah, pouring sugar on my feet is my dark secret. It started with sugar packets, hiding them in my socks so nobody knew. Packets are gateway goodness, it didn't take long before I was hooked on pure cane.
My primary says I don't have any risk factors for gout - I don't drink, don't eat a lot of red meat, don't eat a lot of dark green veggies, and nobody in my family has it. Cultures were negative so unlikely.
Nurse Practitioiner in the ER pissed me off. I mentioned I had Lyme while describing my medical history and she cut me off, "Lyme doesn't cause joint pain". I admit I snapped at her, "Are you kidding me? How do you think it was discovered?". Might be why she didn't do blood tests to rule out infection. She gave me a pretty nasty look. She asked if I had problems with Vicodin. I told her I had it before but didn't work for me so she writes me a Rx for Vicadin anyway. Good grief.
My primary seems to know quite a bit about Lyme. On my first visit told him all the combos of drugs I'd used and he was well aware of why I took each one, even asked me about Flagyl and how my body reacted to each combination of meds. Good thing I had it all in a notebook. He has five other Lyme patients. He said his patients that don't get better he sends to Texas. His PA told me last Friday they just had another patient test positive, so that'll be seven. Hardly enough to make him an expert but he believes in it so I have that going for me.
I do get copies of all my tests. I've been doing that for years, used to move every year so was easier to carry everything with me.
I'll be having "the talk" with ortho tomorrow. Will probably have to look elsewhere but hard to find LLMD in southern Cali. I was terminated on FMLA last time I was out, had to get a lawyer to get my job back so don't want to fight that fight again. I need this handled competently, not get bounced around so it keeps coming back. I have a family to feed. I miss my LLMD back east, she was awesome.
Good news is my sister is in her fourth year at nursing school. She said her program teaches about long term persistent Lyme and that patients who've had it for a long time will have it for life. That's progress. Apparently my struggle with Lyme became a big part of their course as my sister was bringing regular updates and documenting my Rx combos for her class. I didn't even know, she just told me recently.
Now I have some solid info to at least make my case for the right tests. This place always delivers. Unfortunately the "right tests" for me involve more 18 guage needles getting jammed into my knee. That, my friends, was NOT fun.
Posts: 99 | From Cali | Registered: Dec 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Sugarpaw...
You asked for that one you silly thing. Ive read your post several times, but just lost my energy and ability to think.
Short...
1. Call the hospital admin and report that employee. She broke several rules and is a pig besides.
2. For now the primary seems workable. Or at least the best you will get for a while. When you have some time might check this out. All won't help, but maybe some will.
And yeah I deserved that. Acceptance. It's part of my 12 step program. Once the sugar DT's wore off they started giving me daily stevia injections.
Sorry for the long posts. I'll keep them shorter. I delete more than I submit.
Ortho was receptive to what I told him about my Lyme. He says we'll start with rheumatology.
Saw rheumawhater this morning. I like this guy. Listened, said my case is very "complex" (in itself not what you want to hear). The blood tests and results from knee cultures don't match what they typically see. Talked about chronic Lyme and the controversy surrounding it. He seems to know his stuff.
He outright dismissed gout. Good.
Ordered blood work. Lots of it, including Lyme panel. Just filled six vials of blood.
I'm definitely going to look for a LLMD, thanks for the link. Making progress.
Hey Lovincup, since we're getting all cozy with nicknames I'll leave you this :
posted
Sorry TC, been trying to work and spend time with my kids. Luckily boss is letting me work from home (shhhhh....I'm on the clock right now)
Knee is same/same. Still a little swollen. Still painful. Started physical therapy. PT says still fluid in there. Getting more mobility but can't put my weight on it, PT says that's from swelling affecting tendons and quads but will strengthen back up. I hobble with my knee locked and I can get around.
I don't have blood test results yet. I see ortho next Wednesday but don't see Rheumawhatever till June 29.
I fell in love with Lovin' Cup when Phish covered it at a show. Seen them cover it at a couple of shows. Trey's guitar solos put it over the top. One might say his guitar made it better than the original. One might say....
Stones fan long before I was into Phish so those words don't come out easy Posts: 99 | From Cali | Registered: Dec 2011
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posted
Blood tests are back. Still have a bunch of positive IgG bands which I expected, but Rheumy says "not a problem" so my primary said I'm done with that rheumy and is sending me to an ortho who treats Lyme. They both practiced in Chicago and my primary says they saw a lot of Lyme there. Ugh. Still going to find a LLMD here. The beat goes on.
Posts: 99 | From Cali | Registered: Dec 2011
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