posted
I have to provide some background, I apologize for the length and appreciate your interest and feedback.
I am 30 years old and live a very active lifestyle - used to run 7 days a week, since have a child in Oct 2011 I was running maybe once or twice a week. Started to develop generalized knee pain in Jan of this year. Attributed it to 'Runners Knee' eventhough I wasn't training intensely. In may while running, my knee cracked and I was unable to walk for 2 days...went to ortho (xrays MRI) all negative. Sent me to physical therapy, some improvement but not much.
Went back to ortho this month - he insisted it was nothing mechanical and sent me for joint fluid analysis (incl lyme) and blood tests.
I went for my follow up yesterday, dr came in the room and said all tests negative, gave me cortisone injection and said call rheumatologist if pain returns.
As I'm checking out I ask for a copy of lab results. Come to find, they only have joint fluid results, not blood. They had not received my results (of 10 days prior). Result were faxed from lab and sure enough, blood showed positive for lyme.
Other background: at age 3 had bulls eye rash and treated for lyme, at age 11 had knee swollen painful knee - lyme positive again and treated with antibiotics.
Other symptoms: 3 days of high fever (102-103) in July 2012, along with common muscle/body aches and stiff neck. Terrible night sweats for years. Fatigue (I would attribute to pregnancy, infant care, now I second guess even 8 hours straight isn't enough), headaches, sinus issues, itching, anxiety, depression.
Ortho referred me back to Primary Care, still waiting for their return call.
Could this be false positive and just be 'leftover' antibodies from the prior lyme episodes? I've read that steroids should not be given to lyme patients, never would have agreed to the shot if I had realized the doc was missing half of the lab results. Thoughts, suggestions??
P.S. yesterday I posted a note in the other forum to request dr referrals in PA, no response yet.
Posts: 13 | From PA | Registered: Sep 2012
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posted
I would look for LLMD that does the clinically diagnosis along with labs.
Since you live in the NE you should be a to locate a dr that can help you.
My LLMD is a DO in Colorado and used a totally different method of diagnosing my Lyme.
I am still in the process of doing the due process, but feel I am gaining.
Posts: 620 | From Ks | Registered: Oct 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome to Lymenet! You're in the right place. Lots of great people with great advice are on this board.
You definitely sound like you have lyme to me. Knee pain was one of my first symptoms. The blood test (western blot) for lyme is antiquated and has a considerable false negative rate. That's how I got here.
There is a sad controversy around lyme. It sounds like you weren't given enough abx at age 3 or you wouldn't have gotten a swollen knee at 11 (or you could have been bit again). I have been bit many times. Doctors are clueless about the correct dosage because of the controversy. You should get the book, Cure Unknown. It explains everything and it's fascinating.
I'm no doc, but to me, it sounds like you have lyme and other co infections (came with the tick bite).
Don't worry so much about a positive blood test because it's flawed. If your test turns out negative, you could still have it. The correct diagnosis for lyme is a clinical one anyway.
You will want to check out Joseph Burrascano's 16th protocol on lyme. He has been and continues to be instrumental in the war on lyme (understatement). He has helped so many people. His guideline is the first line item under Medical Questions (Dr. B's 2008 guideline for treatment).
It is very important that you find a lyme literate medical doc (LLMD). You can find one at www.lymediseaseassociation.org. Look for one who is ILADs educated/affiliated (International Lyme and Associated Diseases Society). They are cutting edge, IMO.
Also, the award winning documentary, Under Our Skin (below). Keep in mind when you watch it though that the people in it were the worst of the worst (terrible shape). But today, the main gal on it, Mandy, is fine because she got good treatment from and ILADS doc, and she did what it took to get there.
ILADS docs are worth it. Get on one of their cancellations lists and you will be seen fast. I was able to be seen within 3 days.
-------------------- --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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posted
Thanks for the feedback. Anyone out there have experience with Lyme Arthritis?
Is it possible to have persistent swelling and pain without and active lyme infection?
Posts: 13 | From PA | Registered: Sep 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
matinh, I think you need to accept it's lyme. Forget testing, it's a waste of time, money and logic.
You have the symptoms, so it's best to treat the illness. I know, I remember how confusing and doubtful all this can be early on.
I would not let a doc give me steriods for anything. Don't bother looking for a rheumie doc either. Spend you efforts looking for a lyme literate doctor that can answer all your concerns and doubts.
I have lyme arthritis. You must treat the bacteria infection. Cover up the pain from it with any combination of OTCs and pain meds you can that will at least make it tolerable.
I use tramadol and ibuprofen high doses. Tramadol isn't suppose to be addictive pain med. Yes, ibuprofen is not ideal for the liver and kidneys. This is the combo that was the most helpful for me. Inflammation=pain.
But one has to be able to live some type of life.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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my IGG was reactive in the following bands: 18,23,39,41,58.
IGM were all non reactive
I am extremely unhappy I agreed to the shot - and this was negligence on their part since they had not reviewed all lab results prior to giving me a plan to treat the 'undiagnosed' knee pain.
Still playing back and forth with Primary Care - prior to even reviewing the lab results, they are saying blood is probably false positive since I've been treated for lyme previously and they have already hinted at sending me to a rheumie. I can't believe they haven't even offered me to come in and talk to a doc...I feel like monkey in the middle here.
Posts: 13 | From PA | Registered: Sep 2012
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I would document everything. Get a copy of all tests. (sounds like you have them)
That is a VERY high ELISA.... and enough bands for two people.
Doctors like yours make me want to scream.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
they sound like such jerks. you need tx asap. but-fyi i had 3 steroid shots b4 i knew better-back when i was a good girl and did what the doctor said.
i taught pe on those knees for another 7 yrs b4 getting them replaced and so the steroid shot is bad but not the end of the world
get correct tx asap with an llmd and you should be ok
if you need more PA referrals let me know...i have a long list but dont like to gice it out cuz i only know 2 of the docs personally...better you get an llmd from someone who knows them
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
thanks again for the responses, is ELISA the 'Lyme AB screen'? sorry tried to google and didn't get a clear definition.
update from my primary care, they still haven't reviewed my blood results (b/c my lovely ortho failed to fax). but the soonest they could see me is oct 1st....is this for real?!?! seems like such negligence.
i have all test results, glad i demanded them @ the appointment after they failed to review them prior to tx the knee pain...grrr.
i meant to point out earlier the the joint fluid came back NEG for lyme.
will begin the chore of researching docs, not feeling very positive about this at all...
Posts: 13 | From PA | Registered: Sep 2012
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thanks again for the responses, is ELISA the 'Lyme AB screen'? sorry tried to google and didn't get a clear definition.
--Yes --
update from my primary care, they still haven't reviewed my blood results (b/c my lovely ortho failed to fax). but the soonest they could see me is oct 1st....is this for real?!?! seems like such negligence.
--That's why I said to document--
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
you need to start doxy now.
test results dont mean anything until read by an llmd
you need an llmd---lymetoo or i can help you. you dont need "research docs"
you need doxy now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
lpkayak - tried sending you a pm, your inbox is full.
in southeastern pa near doylestown - if you know any doc's there send the info my way.
Posts: 13 | From PA | Registered: Sep 2012
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
martinh - a good place to start would be to find a local lyme support group. Call them up and ask them about doctors.
I wouldn't waste your time with the primary care doc at this point - focus your energies on findign the best LLMD you can. My own primary told me the same thing about having a false positive, which was wrong, wrong, wrong.
One other piece of advice - it is very hard to get into the top LLMDs because there are too many people sick with Lyme and not enough top LLMDs. So, you start where you can, and get on the waiting lists and try to get into a decent LLMD now, or maybe a PA or nurse practitioner in a great practice, then work your way up where you can. I was so stressed early on, and this piece of advice really helped me.
This whole Lyme thing is really horrible, but one of the hardest things is figuring out that you have Lyme, and you have don that now, so you have already taken a giant step towards better health!
I also wanted to let you know that you are far from the only one who has been given steroids. I was too, and I just try to accept that what's done is done, and move forward and try to get well.
Posts: 1737 | From Virginia | Registered: Aug 2011
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