GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
i am having my right knee replaced in the middle of august.i still am lyme positive.but need the knee replaced for all the pain it is causing me.already had 3 surgeries..
i need to know,what will be the right name of a biopsy performed of the material removed from my knee ?
i need to know this,so i can have my pain management doc request this for me, to the orthopeadist doing the surgery.
this is very important to me...or , can you put me in touch with someone you know,that has had this procedure done...
please , i know that abx will not help.the damage done , is done.the pain is wall climbing..please help me..thankyou up front , gary
p.s..i am aware of surgery and having an active infection.my lyme situation , has been bought to my orthopeadist's attention.i still have a list of blood test's to go through.....
Posts: 1108 | From PA. | Registered: Jun 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I would suggest getting online to MDL lab and Igenex lab and getting a phone number and calling them for specific info on if they do tissue examination for Bb...and if so how they want the tissue sent to them.
I know MDL does this. And I had some tissue sent to them in parrafin block. That is how it is usually preserved after a surgery.
I hope your orthopedic doctor is kind towards you with regard to lyme.
My orthopedic doc set off lyme in me by giving me a steroid shot. I then had a herx reaction to the IV vanco given during knee surgery. He had no idea what was going on. I fell apart for a year and a half, and while he was concerned, he was also clueless as to what was wrong with me. By this time, not only my knee, but my shoulder and hip were also hurting me.
He moved. When I figured out it was lyme, I sent him a long, polite letter with lots of articles about lyme, and steroids and lyme. I never heard back from him.
Then I saw an orthopedic doctor in NYC. He took one look at my Columbia report and tossed it aside...basically discounting lyme. I was devastated, for lyme has taken my life from me.
I would like to educate orthopedic doctors. If yours is kind towards you and lyme, let me know...perhaps he might be the link to get the word about lyme out to the orthopedic community.
Good luck. My knee hurts me too.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey old friend,
Actually, I am pleased that you are having this surgery...I know you have suffered enough and for long enough.
As long as you are prepared for the after surgery flare...I do hope that it will ease your pain eventually.
Good suggestion from Timaca. Here is the contact information for both labs.
IgeneX, Inc. Tests for Lyme, Babesia, Ehrlichia, and Bartonella #800-832-3200 www.igenex.com
MDL Lab Tests for Lyme, Babesia, Ehrlichia, and Bartonella #877-269-0090 http://www.mdlab.com
Take good care of you, and please keep us posted about the surgery, OK?
Much love, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hey Gary, long time no see. I know you're in severe pain with the knees.
Can you manage to call Igenex or MDL, or do you need one of us to do it.
Can you donate blood ahead of time to use for the surgery?
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just a big howdy to an old friend!
Good to hear you are getting help. Looks like the others have given you what info you needed. Aren't they great?
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Gary, good to hear from you..Sorry you are still having trouble with the knee..
My daughter's llmd gave us the box, etc that we needed for a biopsy to be sent to IGENEX. Proceedures were very well spelled out for the surgeon..
However, the biopsy did not have any bacteria in it..So I was disappointed..The damn things must have bailed ship just in time..Or been elsewhere munching away because they are still there and now have some new friends from a new bite.
Also forced to part ways with the good doc in New Holland..The Doc and my daughter were not the best of friends, and actually the good doc did the major damage herself, and I can no longer force her to go there. Wish it was still a possibility....Miss her expertise.
Posts: 2360 | From SE PA | Registered: Mar 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sorry...but the docs at Northwestern conveniently "forgot" to have the bone and synovial fluid checked for Bb...not once, but twice (both knees replaced - different times by their own lab which was supposed to have been alerted to look for Bb.
Try to get the gadget that you put on a few times a day that delivers an electrical stimulation to "speed healing".
Since Sis was alone much of the day and had no way to get to physical therapy, she had this unit at home.
"Some orthopedic surgeons recommend a device known as a continuous passive motion (CPM) machine immediately after surgery."
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
thankyou for your response's and suggestion's.i will try and get the kit fora tissue biopsy from mdl.my ortho sould have no problem with it..
i have been in my own self imposed hell,here in buck's county. got my happy pill's and fentanyl patches.between the lyme fog and painkiller's,i don't remember much of day by day activities.not that i can do much....i know there is a light at the end of the tunnel for me. just didn't figure the tunnel was so long..
sorry to hear about you not seeing dr s. any longer lymemom2..she is a great help to all ,with lyme.hope your still holding on..
i will keep you updated from time to time.there is comfort here. be well , gary
Posts: 1108 | From PA. | Registered: Jun 2003
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I ordered biopsy kits for hubby from MDL for an endoscopy sometime next week. Also talked to the lab director.
As a general rule PCR for Lyme is usually positive only 4 -6 % of the time. Was told that if you took 35 samples from the same person your odds would increase to positive 50% of the time. Biopsy specimans are tested by PCR. If you had a Lyme rash the PCR from a biopsy of that is usually positive 75% of the time.
Can have biopsy PCR tests done for Lyme, Babesia, Bartonella, Ehrlichia, Mycoplasma and the new Lone Star Lyme test.
Would suggest that you have both biopsy sample and synovial fluid tested as Marnie mentioned. May require 2 different test kits, but I don't know for sure.
Good luck with the surgery.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Gary,
Bea has pointed out that the biopsy will be tested by PCR, which is usually positive only 4 -6 % of the time.
If your biopsy should prove to be positive for Lyme, how will that affect the treatment decisions?
Bea, Did they quote a price for the biopsies?
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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GEDEN13
Frequent Contributor (1K+ posts)
Member # 4151
posted
carol , if i show positive for lyme,i will seek treatment after my surgery.i talk with my rep for my ins. co..she said , show proof of lyme,and ins. will pay for treatment..also will need a llmd..
i am not thinking too far ahead.i will before confused and flustered= angerlyme.it does get bad with me now.
bea , thankyou for your input.could you please help carol in finding info for me ?i please do not want to burden anyone. to many thing's weighing on me.and you all know how that is.
thankyou for helping me.this mean's so much.wish i could get my head outa this dense fog. be well , gary
Posts: 1108 | From PA. | Registered: Jun 2003
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posted
I had a hysterectomy and had tissue sent to test for Lyme. Can't remember where I sent it now, may have been MDL, will check later. Knew the importance of doing several tests but only could afford do to one PCR, though if I remember right, they took tissue from 3? different parts of the sample and mixed them together for the test. The PCR was negative, though I all ready had positive western blots, I wanted to try to prove what my LLMD said; that the surgery was necessitated by inflammation caused by Lyme.
ONE THING THAT HASN'T BEEN MENTIONED YET, IS THAT MY UNDERSTANDING IS THAT IT IS EXTREMELY IMPORTANT TO BE ON ANTIBIOTICS AT THE TIME OF A SURGERY. The surgery opens up new places for the Lyme to live, so when you have surgery without being on antibiotics to keep the little buggers in their place, they will just go live in all that wonderful traumatized tissue from the surgery.
My father, 72 years old, is Lyme positive by PCR but refused to treat or believe it and had two knees replaced and he did not get the relief one would expect- still in immense pain. Just had a hip replaced about 2 months ago, we'll see if that does any better.
So, think about tring to be on antibiotics any way you can for the surgery. If I remember right, I'm pretty sure it was an LLMD that told me to be on antibiotics for any surgeries.
My best to you, Robin
Posts: 103 | From California | Registered: Jan 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I tend to disagree with being on abx while having surgery for your knees...
It may be right for your lyme but not for bacteria usually associated with knee surgery. They will give you abx after surgery and it may be counter indicated to the one you chose to be on for you lyme.
I had both my knees replaced and was NOT taking any abx just prior to and durring surgery... My new knees are doing fine...
That machine discussed above is a TeNS unit which stimulates and deep massages muscles surrounding the replaced knee...muscle that atrophied while you refused to work the diseased painful knee.
It has been said that electrical stimulation aids in bone growth and repair which is beneficial after knee replacement.
I utilized the tens meter on my right knee replacement but it was'nt offered with my left knee replacement... decidedly different results...my left knee is definitely worse than my right knee...
This could have been the result of not using the tens meter on the left knee(even though I requested the machine)...
or these souther orthopaedic DUCKS are just worse surgeons...which is PROBABLY the case...
these guys are dumber but have BIGGER EGO'S than the better surgeons up north......sheesh......
Any way Gary...I sent an email discussing your autogolous blood...
Hope things go well for you....bend it as soon as you can to stretch that muscle...then straighten it flat out as much as you can...
It will be painful...but in a year or so...you'll benefit from pushing it's degrees of movement....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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These are the prices quoted to me by MDL labs last week -- price is the same for either a PCR bloodtest or PCR biopsy test.
Note: 2 prices quoted -- Full price and 40% discount price if fee paid in advance (works well if no insurance or insurance out-of-network)
Test#323 Bartonella Species Panel (4 strains) $590 or $354 prepaid
Test#338 Mycoplasma Panel (4 strains) $610 or $366 prepaid
Test#411 Anaplasma (Ehrlichia HME/HGE) $260 or $156 prepaid
Test#410 Babesia Microti $130 or $78 prepaid
Test#305 Lyme Disease (B. burgdorferi) $150 or $90 prepaid
Test#430 Borrelia lonestari $130 or $78 prepaid
Prepayment can be made with credit card.
Test kits are delivered by DHL and take 3 - 5 business days to arrive.
The test requisition form is included with the test kit -- must be signed by a doc and needs to have diagnosis codes added.
Additional $20 fee for mailing specimans overnight by DHL. Can pay with shipment or can be billed. Multiple specimans can be mailed in same overnight bag. Was told that biopsy specimans could be held for as long as 2 weeks if refrigerated and the test would still be valid.
Hope this helps.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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If there is any way you can afford it, I would suggest having 2 or 3 samples tested from biopsy specimans and an additional 2 or 3 specimans tested from synovial fluid. Think Test #305 for Lyme is your best bet.
Lab did not seem very confident that biopsy samples from G.I. would show anything other than Lyme or Bartonella (hubby does not really have lots of symptoms of that).
Would need multiple test kits for multiple specimans. Be sure to ask how the synovial fluid should be preserved as I have no idea on that.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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