Lyme and Ligament/Tendon/Collagen Pain Mystery

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jules.r.s.
New Member


Date Joined Apr 2016
Total Posts : 3
   Posted 4/15/2016 7:32 PM (GMT -6)   
After 13 years of misdiagnosis and misery- my lyme was officially confirmed (in the ER of all places) at the end of February and I began treatment March 19th. My llmd instructed me to start the doxy I was prescribed in the ER to start to see how my body responded. I also added a few Buhner herbs and diflucan every other day. What brought me to the ER was a pain that is very difficult to describe. When it first started in early Feb I thought it was intense bout of restless leg syndrome in my left leg- but it quickly escalated to what I thought was a blood clot (which was ruled out). The pain is behind my left knee and feels like someone has wrapped a large latex rubber band around it and is squeezing it as tight as possible- it literally feels like there is no blood or oxygen getting to the area. It is excruciating. It is different than joint pain (which I would actually prefer) it is a maddening sensation that pain killers simply can't touch and doesn't improve with movement or rest.
Initially, it improved with the doxy and now is back and worse than before. It is hard to know if I'm herxing or if the lyme (+mycoplasma and possible babesia) is getting the upper hand because I'm on such a low dose of doxy. To make a long story short, has anyone experienced this pain? I haven't heard anyone describe it. I need to find some relief from it- it is unrelenting to the point that I can't sleep, or work and soon stand. Any insight would be appreciated!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 4/15/2016 7:52 PM (GMT -6)   
jules - sorry you're suffering with that.

Is it a Baker's cyst? Do you see/feel swelling? That's what I had and when I bent my knee it hurt quite a bit.
It's fluid build-up - and it developed after several months of knee joint pain...now that the joint pain is much better, the cyst has gone down considerably.

Maybe discuss with your Dr.? Anti-inflammatories might help.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

jules.r.s.
New Member


Date Joined Apr 2016
Total Posts : 3
   Posted 4/15/2016 7:57 PM (GMT -6)   
Hi Girlie,

Thanks for the response! There is no fluid or swelling fortunately and it didn't show up in an ultrasound- so I don't think so. Glad your knee situation is improving! turn

kobetobe
New Member


Date Joined Apr 2018
Total Posts : 4
   Posted 4/7/2018 1:46 AM (GMT -6)   
Hi jules.r.s.
I think I had similar thing.
jules.r.s. said...
The pain is behind my left knee and feels like someone has wrapped a large latex rubber band around it and is squeezing it as tight as possible- it literally feels like there is no blood or oxygen getting to the area

but not the same.
It all started with gradual inability of bending knee to its max.
I mean 140ish degrees VIEW IMAGE). Found it first when kneeling. Also I felt my knee was weakened somehow (I would refer to your rubber band around it). At some point I couldn't walk without pain. It was very painful when bending. No swelling of the knee itself, no raised-temp, no fluid, no Bakers-cyst. Ultrasound showed nothing. It simply wasn't the knee. From first symptoms to heal it took around 2months.
To fill the picture, just weeks after first symptoms I was diagnosed Lyme and took doxy for 28days. After doxy it continued to be an issue.
What helped me? Physio.
My physio located muscle cramp here:
VIEW IMAGE
- see Gastrocnemius medial head, this is where I had tension and strain. Physio gradually worked on this and I did my PT using hard ball and rolling my strengthened leg on it. With time it faded. Also occasionally for another few weeks I had strange feeling like something stinged me into meniscus. Then all vanished.
Then 6 mths after the same thing started. Same muscle and it's tendon. I knew this time exactly how to work on it. Overall it took 3 weeks and this time it was weaken, didn't finish with problems with walking.

The whole thing is around tendon and ligament, muscle cramps(?). It's not typical lyme arthritis affecting joint.

How are you now with it?

Post Edited (kobetobe) : 4/7/2018 1:52:59 AM (GMT-6)


goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2305
   Posted 4/7/2018 4:21 AM (GMT -6)   
Hi have you tested for Bartonella . I have had extreme pinching/squeezing in my calf area. Also had ultrasounds to rule out blood clots.

I get the restless leg feeling but its not just in my legs ...more in the core area/chest/trunk area of my body. That has gotten better though, thankfully.

Hope you get relief soon.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 388
   Posted 4/7/2018 8:15 AM (GMT -6)   
I would second the thoughts around bartonella. I've had a lot of problem with my left knee on and off. The pain is in the back of the knee and prevents me from bending it more than 90 degrees or so. My physio suggested a bakers cyst as the back of the knee is 'a no mans land' as he described it but there was no visible swelling. It seems to come and go. I had it for a few months before it resolved and now it seems to be flaring again although not as bad this time.

I do a lot of physiotherapy exercises to try to keep all the surrounding muscles as strong as possible although I'm not sure it really helps I like to feel that I'm doing something positive.

I'm glad you were finally diagnosed Jules! Hopefully things will finally start moving forward now. smile
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017
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