Could bi-lateral patellar tendonitis in my knees be a result of Lyme Disease? I have been through 2 months of physical therapy, cortisol shots, high doses of anti-inflammatories and the knee pain has been unshakeable.
A little background on myself: 1996 - Diagnosed with Rheumatoid Arthritis, Ankylosing Spondylitis 2006 - Anxiety 2007 - Epstein Barr, suffered for 1 year Feb 09' - Mercury Poisoning, unrelated? Feb 09' - Bilateral Tendonitis June 09' - Lyme Diagnosis
Other presenting symptoms over the past 4 years: 1. TMJ 2. Carpal Tunnel 3. Costochondritis 4. Eye Pain 5. Vertigo 6. Blurry Vision 7. Tenitis 8. Poor Night Vision 9. Debilitating Fatigue 10. Neurological Problems, Short Term Memory
Thank you all for your support.
-- Bob
Posts: 9 | From South Jersey | Registered: Aug 2009
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massman
Unregistered
posted
Joints and nerves and joints and nervous system. Have you had your heart checked.
Some here feel (me included) that RA and ALS are lyme. Steroids often worsen it.
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posted
Thank you for your response. Just to clarify: ALS means Ankylosing Spondylitis? And some people believe that its not RA, that it's Lyme?
And I'm not sure I understand this sentence, "Joints and nerves and joints and nervous system."
I have had my heart checked thoroughly in the past year when I was suffering from Costochodritis.
Posts: 9 | From South Jersey | Registered: Aug 2009
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bettyg
Unregistered
posted
welcome bob; check out the symptoms list below
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS 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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
No Bob,
ALS is short for "Amyotrophic lateral sclerosis", not AS like you have.
I'm sorry it looks like you've been through the ringer for sure like so many with Lyme. I hope that you find some answers/treatment that you are looking for/need!
posted
bob - commments mean that lyme often targets nervous system, joints and heart.
And thanks Ocean - just got back from a break and just read the ALS mixup.
I studied with an RN from central PA 4 summers ago and she was stating that so many neurological and joint diseases were really lyme. Made me open my eyes wide and eventually get computer tested for lyme. And Babs too.
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posted
Bob -- looking back the knee pain you were describing was my 1st symptom. My LLMD states that is usually the first symptom and for some reason lyme & co love to 'hang out' in our knees.
Once I began treating the lyme -- the knee pain went away as did my other RA symptoms.
Also steriod shots are DEADLY for people with lyme. Anything that suppress your immune system is a big no-no.
To me, your symptoms are classic lyme. Once you look at a symptom list, it will all begin to make sense.
Hang in there.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Yes, Lyme loves the knees and I guess other joints too, so your symptoms could certainly point to Lyme all this time.
You asked about ALS--that would be Lou Gherig's disease (I can't think of the term where ALS comes from, words are too big to remember this early, lol).
If you don't already have a LLMD, you should probably find one.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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I am starting think that all of my troubles in the past four years are NOT all a series of unlucky coincidences.
I have had an MRI done on both of my knees which showed no signs of Arthritis, which is the common diagnosis with knee pain and Lyme's. My pain has been diagnosed as Tendonitis, which is different.
I know that if you read enough symptom lists you bound to find your symptom. Is there anyone out there who has had Tendonitis, more specifically Patellar Tendonitis, as a symptom that eventually resolved with oral anti-biotics?
Hello "asummers". Was your knee pain diagnosed as arthritis?
thank you, Bob
Posts: 9 | From South Jersey | Registered: Aug 2009
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posted
My knee pain is my worst symptom. Years ago a doctor suspected RA but tests showed I didn't have it. After walking for about 5 consecutive minutes my knee pain becomes practically unbearable. My back and ankles soon follow. I've been treating with oral ABX for almost 8 months with NO improvement in the knee pain.
Posts: 124 | From Toronto | Registered: Aug 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Wow, this is surprising.
I had really bad knee pain for 6 months to a year, 1 year before I "crashed" and became really ill.
I was diagnosed by a physical therapist with "patella-femoral syndrome" which meant that something was not right with that area, and I do believe they thought it was tendon-related. They were saying that if I wore orthotics, that would correct it, because it would correct the way I walked/ran.
It used to hurt when I ran (I was in athletics), and even in the morning, I would have to sit down while brushing my teeth because they hurt too much to stand that long.
Now that my immune system has been boosted and I'm actually responding to antibiotics with herxes, I have noticed that the "Lyme" drugs like Biaxin and Bicillin will bring out knee pain.
For awhile I suspected that I was infected with Lyme one year before I thought I was, and the knee problems were Lyme. This is making me even more suspicious of that.
What's funny is the knee pain never made sense, because I was a very healthy high schooler. I thought maybe it was from running too much.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Anyways, for bob jr.-- the knee pain I describe was almost better by the time I actually crashed and started getting super fatigued all the time, and that was before starting antibiotics.
But like I said, now that I'm having "herx" reactions, it will come out again someimes. And I do still test positive for Lyme.
It seems fishy that I had mysterious knee problems, and tested positive for Lyme later on when I was suffering from complete exhaustion. Oh, and the exhaustion was diagnosed as Epstein Barr....so my we actually have two diagnosises in common.
It is interesting too that you had anxiety before the Epstein Barr, because I started feeling suicidal out of the blue, a couple months before the "epstein barr" hit. So it is a similar progression, but mine happened closer together, like all within 12-18 months.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoosier--I too "crashed at one point". I was having knee, back and ankle pain for 5 or 6 years, getting progressively worse. Finally, after coming back from a two week job out of town I crashed hard. Became very dizzy one day at work and then an onslaught of flu like, muscle spasm, vertigo, depression, anxiety and so on came out. Saw a number of doctors and at one point was suspected of having MS but that was ruled out.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
hoosier, also, how did you boost your immune system?
Posts: 124 | From Toronto | Registered: Aug 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes on tendonitis! My LLMD says tendonitis is a symptom of LD. Very common.
I had it so bad in my shoulders and arms that I could barely use them or my hands. The pain was a 9 on a 1 to 10 scale. I was on pain meds for months.
Before I knew it was lyme, I did several months of physical therpy with absolutely no change. With lyme treatment my arms are completely better. It took about a year of antibiotics to fix them.
I still have knee pain but not a 9, more like a 5 or 6. Sometimes it feels like my knees are swollen but they aren't. I also have pain in the tendons below my knees and in my heels. I feel that with continued lyme treatment this too will resolve.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Bob,
Should you decide to find an LLMD to treat you with abx for TBD, you might want to ask him or her to completely avoid using a group of abx called "quinalones" (sp?). They are Cipro, Levaquin and Plaquenil. They can be very destructive to the joints and considering the problems you already have, you (and your doc) might not want to chance it.
Wishing you recovery.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Could bi-lateral patellar tendonitis in my knees be a result of Lyme Disease?"
Yes.
Google the following words and read about them via wikipedia:
*Hyaluronan* - for the most links and explanation ,Lubricin, glucosamine, chondroitin.
Tendinosis refers to the degeneration while tendinitis refers to inflammation.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Lyme attacks connective tissue and can cause inflammation. So yes, it is possible, but it's hard to know if it's lyme or for other reasons.
I mean tendonitis IS a real injury that can be explained by overuse. So, one has to be careful not to ascribe every problem to lyme.
Years ago I had severe knee tendonitis and thought it was just over training. This was 10 months or so after I had the EM rash (didn't know what it was at the time).
This got better over time. But was really not easily explained because my exercise routine didn't really change.
Then I had new unexplained symptoms (GI problems) after what I now think was a reinfection after a hiking trip.
About a year later I developed carpal tunnel syndrome.
I've been on abx for 14 months, I still have CTS.
Was it lyme? Dunno, if my CTS goes away, maybe it was.
James
Posts: 872 | From New York City | Registered: Jun 2008
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I was given the dx of patellar tendonitis first, not RA. I was prescribed PT to do, and I starting drinking this juice called Monavie that a friend recommended to keep inflammation down. It worked for about a year. But this was during the time when I had all these 'random' symptoms. I mean I was still working & running marathons, but I had these weird symptoms that would pop up.
Now looking back and at the symptom list, all my symptoms make sense.
The diagnosis of RA came later when it felt like every joint in my whole body was on fire. I wasn't buying that one. I mean you go to bed one night 'healthy' and the next morning you feel like you were run over by a mac truck in the middle of the night. I didn't leave my bed for 1 month! That's when my fight with Lyme really began.
Anyhoo...Like you, I wasn't buying the RA diagnosis. Kinda like Hoosiers51, every once and a while during a herx, I will get some knee pain, but overall it is non-existent anymore.
I have been in treatment for 8 months and I am 85% better. No pain, just some fatigue & some brain fog once in a while.
Now please tell me you are an Philly Eagles Fan?
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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posted
Marnie, do you have a recommendation on what I can take to help with the tendonitis? I already take Glucosamine and MSM. Thanks for your reply.
asummers, I bleed green. And for all you non-Eagles fans out there, thats not a symptom its a metaphor. Does this Monavie really work? I guess I'll have to give it a try to find out.
Thank you, Bob
Posts: 9 | From South Jersey | Registered: Aug 2009
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posted
Good, b/c if you were a Giants fan, I would be bailing out of this thread I bleed green too.
In regards to the Monavie, I am on the fence about it. I really think that it helped w/ reducing my inflamation but the downside is you have to buy it from a distributor and I think it might be a bit pricey.
I will PM you with some more info and to talk about philly sports. I don't want to Hijack this thread with some Eagles talk.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bob...I just had a steroid shot in my right wrist for tendonitis...then I found I was likely very low in
hyaluronic acid.
Triple Flex by Nature's Made contains Glucosamine chondroitin complex and hyaluronic acid (2 per day recommended).
Over the counter.
My wrist is nearly 100% better...after about 1 week.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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I've had it in my wrists, hips, elbows, achilles, plantar fasciiti (sp?).
My tendonitis got better with a decent curcumin based anti-inflammatory. I take InflaThera by ProThera. Zyflamend is similar.
I also took a blood thinner called Bolouke to help blood get to the injured areas better.
It worked.
Welcome and best wishes.
Posts: 55 | From US | Registered: May 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
knobs,
I boosted my immune system with Low Dose Naltrexone. See www.lowdosenaltrexone.org for info on why it works, and where to get it. (need doctor's prescription, fill it at a compounding pharmacy that is familiar with the purpose of taking such a small dose).
Basically, the low dose suppresses endorphin production for a few hours, then your body responds by producing many endorphins. These endorphins boost or balance the immune system, since endorphins play a role in how the immune system works.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I bleed green too. 
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