posted
So a few weeks ago I had some fluid drained off my left knee at the orthopedic office.
I told him I have 2 positive tests for Lyme already, but he didn't feel that Lyme could do make someones knees swell up.
I told him I've done a lot of research and yes it will. So he tells me he is going to look and see if there are any tests he can have run on the fluid to see if there is Bb in it.
Well, day before yesterday I call the office to see if I could get an MRI set up just to see if I tore something, etc.. Nurse told me she would have to get back to me tomorrow. No problem.
Yesterday I get a phone call from them. They don't want to do an MRI because they found something in the fluid. They also said that the ID doc at the hospital wants to see me ASAP.
I've been waiting to hear back from Dr. C in Tampa to see if they were going to accept me as a new patient, but this ID doc sounds like they want to start abx (most likely IV) immediately.
Just thought it was interesting that they saw something in my synovial fluid and wanted to share my experience with you all.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
Please let us know what they found. And get a copy of the test result for yourself.
Bb is not very often found in synovial fluid. It is tissue trophic, and would more likely be found in tissues in the knee instead.
But I am not expecting much from the ID visit, especially if you were told lyme did not cause such knee problems. Knee problems are very common in lyme patients. Including baker's cysts, swelling, cartilage, etc. You are dealing with doctors who really know almost nothing about lyme.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
My appointment is tomorrow with the ID doctor so I'll let you know how that goes.
EDIT:
I have to point out that my ortho doc didn't take that "matter of fact" tone when he said he didn't think Lyme caused knee swelling. It was more of a statement that had some doubt in it.
Much better than the rheumatologist telling me repeatedly that "THERE IS NO LYME IN GEORGIA" when I kept arguing the fact "yes there is!"
His take on it was he was born and raised in S. GA and there is no Lyme here.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
If the ID doc wants to start treatment ASAP and I'm still waiting to hear back from the LLMD as to whether or not he is going to take me on as a new patient...do I start the treatment?
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
It depends on what he found. It would be nearly impossible to find "lyme" in a synovial fluid aspiration. Spirochetes are next to impossible to culture. More than likely he found inflamatory cells or some other bacteria. I would absolutely get the treatment he/she offers. A "septic joint" is a medical emergency and should not be ignored. You may certainly have both lyme AND a joint infection from another pathogen. The two are not mutually exclusive.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
| IP: Logged |
adamm
Unregistered
posted
Ha--Lyme can't make knees swell up?!?! He's pulling that assertion straight out of his @$$. Even the docs who know the least at least consider Lyme capable of doing that; in fact, a knee infection is what Lyme's "officially" defined as being.
IP: Logged |
posted
I also have a friend of the family that is an orthopedic surgeon and after 6 months of my knees swelling for no reason, I called him. If anyone was going to be operating on my knees it was going to be him.
Unlike the ortho I've been seing he likes to rule out other possibilities before rushing into surgeries. He is the one who ordered the initial blood work that came back with the elevated lyme titer.
Really, really wished they would have done those kinds of tests in the beginning.
PLEASE NOTE... Family friend ortho is NOT the one who said Lyme can't make your knees swell.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
A few years ago, my youngest son was diagnosed with acute lyme after a week of fevers over 104 and then, thankfully, a perfect bulls-eye rash.
That same day both of his knees swelled up so quickly and so drastically that I had to carry him in to the doctor's office. His knees were just HUGE! He could not bend them or walk at all.
Shortly after beginning antibiotics his knees cleared up completely.
Posts: 345 | From East Coast | Registered: Apr 2008
| IP: Logged |
I don't know why the ortho office said they found something in my synovial or that the ID doc wanted to see me ASAP.
Ortho doc called the ID doc to ask what he should do and she told him to send me her way. The fluid analysis was never even mentioned.
After talking with her for a while about symptoms, she prescribed me doxy, 100mg 2x daily for 28 days then some additional if that doesn't work. She told me based on symptoms she doesn't feel I need IV yet because it's mainly in my knees.
She also took some blood for co-infection testing, but I think unless I get positives from those, I'm going to go with Fry Labs.
At least it's something until I can get in to see Dr. C in Tampa.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
That might not be a high enough dose, but some lyme docs start out low to avoid a big herx in untreated people. So, good that you got some meds. Let us know what the coinfection tests say. I am a bit surprised that the ID doc even thought of coinfections. Good sign, even if the labs used are not optimal.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
adamm
Unregistered
posted
That's half the does you need to take it at, and nobody's ever gotten into remission with just 28 days of txment. Just out of curiosity, do you have any idea how long ago you were infected?
posted
Taking that dose of doxycyline did help my knees. I took it for six months in 2006. It didn't help my other symptoms, and I felt terrible the whole time.
I had my right knee tapped last year and nothing, zilch, nada, showed up despite it being very swollen. My primary care doctor was amazed, and ended up refering me to the doctor you mentioned.
Both of my knees have had intermittent swelling, starting with my left one in 1999.
Doxycycline will kill some of the spirochetes, but it also lowers inflammation in joint fluid.
Good luck getting to see the LLMD. He's a good doctor.
Posts: 353 | From Florida boonies | Registered: Nov 2005
| IP: Logged |
quote:Originally posted by Nebula2005: I had my right knee tapped last year and nothing, zilch, nada, showed up despite it being very swollen.
I've had fluid drawn off the right knee twice..nothing. Left knee 3 times, nothing. The only thing that the fluid showed was inflammation.
Just this last time I had the left knee drained to relieve some of the swelling. That didn't do a dang thing, nothing, for the swelling or pain!
It's not so much that my knee joints themselves hurt, it's the muscles around them from all the swelling.
It's making me emotional as hell because I have a hard time kneeling down to pick up and play with my 11 week old son.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
Make sure you stay out of the sun while on doxy. To avoid yeast problems, take probiotics two hours or more after each doxy dose. Watch out for herxes. Some newbies confuse them with drug allergy.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
quote:Originally posted by lou: Make sure you stay out of the sun while on doxy. To avoid yeast problems, take probiotics two hours or more after each doxy dose. Watch out for herxes. Some newbies confuse them with drug allergy.
I'm really, REALLY hoping that I'm one of those people that don't get too photosensitive on doxy. I live in the south where the sun is always out. Parent's also have a 30ft boat in the marina that I take care of.
Guess I'll cake on the sunblock, where long sleeved shirts, etc to keep it to a minimum.
Thank you for the tips though! I have to get some probiotics from the health food store until I can order some theralac.
Acupuncturist down a few doors had some Quantum Probiotic Complex that I could pick up the it's expensive!
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
posted
Paying a lot for probiotics is worth every penny!
I stopped by to suggest a good pair of sunglasses too while on doxy!! It's always my eyes that burn first while on that stuff!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Who's to say how good their testing methods are on the joint fluid? Since I do know that positive joint fluid samples are not uncommon.
Michelle
______________________________________
S. Albert1, J. Schulze1, H. Riegel2 and V. Brade1 (1) Institute Med. Microbiology, University Hospital Frankfurt, Paul-Ehrlich-Str. 40, D-60596 Frankfurt/M., Germany, DE
(2) Laboratory Dr. Riegel u. Partner, Kreuzberger Ring 60, D-65205 Wiesbaden-Erbenheim, Germany, DE Summary
Lyme arthritis (LA) may be confused with other rheumatic diseases, particularly in the absence of a history of erythema migrans (EM).
We report the case of a 12-year-old patient who developed a large effusion of the tight knee joint. The titer for antinuclear antibodies was 1:80 and the test for rheumatoid factor was negative. - Investigations for antibody response to Borrelia burgdorferi demonstrated remarkable elevation of IgG antibody and no specific IgM response. These results were confirmed by immunoblotting reactivity with the bands p83/100, p58, p43, p41, p39, OspA, p30, OspC, p21, and p17.
We subsequently learned that the child had suffered a tick bite followed by an EM 5 years earlier and had been treated with trimethoprim/sulfamethoxazole at that time.
The patient now was given intravenous ceftriaxone, 2 g daily for 14 days. In the absence of clinical improvement 3 weeks later a knee joint aspiration was performed which resulted in a positive polymerase chain reaction (PCR) test for B. burgdorferi DNA (OspA) in the synovial fluid. The patient fully recovered 2 months later without further treatment.
The case indicates that the latency period between EM and onset of LA may last up to 5 years. In addition to serologic test methods, analysis of synovial fluid using PCR may be decisive for making the final diagnosis of LA.Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I like that Lyme is "only in your knees" part.
Do you have any other symptoms other than knee swelling?
I started on 200mg of doxy for 30 days.
Felt horrible the whole time.
My LLMD upped it to 300mg (I only weighed about 125lb then).
Felt better in a couple of months.
Must watch the sun on doxy. I live in Southeast La.
I took a car trip to Texas. My left hand was in the sun the whole trip (6 hours).
You would not believe how burned it was!
I then did the "Michael Jackson" one glove thing .
Sunscreen helps, but won't keep you from feeling like your skin is burning.
Also take doxy with food.
Do not take it and lay down for at least one hour or two.
It can burn a hole in your esophagus (or make you feel like it did).
I learned all of this the hard way.
Watch your diet too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Good find, Michelle. Guess it is at least possible to get a positive on synovial fluid. My previous comments were made on the basis of hearing the contrary from lyme docs. Is this in Dr. B's guidelines? Got to check and see one of these days. It would be a kick if my synovial fluid was positive when my blood isn't.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
My husband finally went to our LLMD three years ago when he could barely walk down the stairs in the morning due to his knee pain. NOw keep in mind he has a very strong immune system and tested CDC positive right off the bat. Lots of positives on his lyme tests. More then I've ever seen so his immune sysem is working.
He went on only minocylcline (exerienced none of the dizziness side effects) for 9 months and was 100% better. Claimed he hadn't felt that great in 10 years! Went on a week golf trip and had zero difficulties with his knees. He hasn't been on any ABX in almost two years without any further knee problems.
Like I said he obviously has a very strong immune system and is one of the lucky ones. He appears to have other minor lyme symptoms, mostly with the memory but hey, his knees are in great shape now. I bet if he had gone to a doc that wasn't lyme literate they would have probably wanted to do surgery. He was in bad shape when he started treatment.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
quote:Originally posted by JesseSapp: It depends on what he found. It would be nearly impossible to find "lyme" in a synovial fluid aspiration.
This is not true. It is rare, but synovial fluid can test positive for Lyme disease. Mine has tested positive twice in the past two years.
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lymeindunkirk,
thanks for noting this:
" . . . He went on only minocylcline (exerienced none of the dizziness side effects) for 9 months and was 100% better. . . . ."
I sent you a PM, but also thought that if you might recall anything special about how your husband did so fine with mino (no dizziness) that it may help others who do get that side-effect.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
posted
Just an update real quick on the whole lyme in the synovial fluid thing.
I got my paper work from my ID doc so I can give it to my LLMD next week. In her notes it says the following...
"The patient in the interim also saw ***** ******** regarding a left knee effusion. Apparently, Lyme testing on the synovial fluid was performed with a Lyme IgM, IgG value of greater than 5.0"
I'm not sure what the range of the test is...sorry.
Posts: 123 | From Georgia | Registered: Jul 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic