posted
I haven't been on here much lately, and this is not much of a question but more of an update and a learning experience for me.
I have been aggressively treating Lyme for about 7 or 8 months now with a great LLMD
In September she added cipro to my abx protocol
It made a huge difference within just a few doses, then caused a huge herx, then really seemed to be working well. I had more energy and my headaches that I had had for 20 years were gone.
Then my shoulder pain (which preceded cipro) got really bad, and then one day I heard a "pop" and had some really bad pain after closing a door behind me. (My shoulder had been hurting moderately since June...my PT thought it was related to my liver which has been really challenged throughout the treatment process)
That was in early to mid November.
So I just wanted to update....I went off cipro, had some mild symptoms return but nothing like before starting it. So I definitely am dealing with Bart.
After working with my PT and having increasingly bad pain and limited range of motion, PT referred me for an MRI
MRI shows "possible tear" but they can't tell me until they go in arthroscopically (sp?). Not on the top of my list.
So 4 more weeks of PT 2 x per week and then we will see.
But the ortho suspects "frozen shoulder"...which makes sense but has me really really upset because it feels like just another chronic inflammatory very painful condition that inhibits me from fully working and being a mom and functional member of society. I would almost rather a tear that can be repaired.
But.....I stupidly allowed the ortho to give me a cortisone shot at the first appt last Monday. I thought it had to be done diagnostically (a tear would be diagnosed if even after the pain went away due to th shot....there was still weakness).
Cortisone shot made the pain so much worse, it hurt just to breathe.
Then all hell broke loose. My hear keeps fluttering/skipping beats and I am having a lot of anxiety, trouble breathing. All of these are the same symptoms that I had prior to LD diagnosis the last time I took oral prednisone.
I have been having a hard time accepting the frozen shoulder diagnosis because of the length of time that it takes to go away and the impact it is having on what I can do for my kids (e.g. putting up christmas lights is out, throwing a ball with my son is out, every freaking thing is so hard). This is the absolutely busiest time of anyone's life.......I am in my early 40s with 3 growing children who are involved in everything. There is no down time and nobody who understands what it feels like to feel old before my time.
So this update is meant to give you my perspective on two things: cipro and cortisone shots.
1. Cipro...I am not sure if it contributed to weakening the shoulder as I had pain before. I am glad I gave it time and will ask my LLMD about pulsing if headaches come back and energy wanes again. Since I do not know if I have an actual tear........I would tell people be careful but cipro does work.
2. Cortisone injections. In my book do not do these. I thought the Lyme was my better controlled at this point but the injection has thrown me for a huge loop physically and emotionally, but the heart symptoms are the scariest and ONLY present after a course of steroids. Apparently cortisone injections can be as damaging.
I hope this helps somebody in the future.
Thanks for letting me vent here!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm dealing with a ton of body-pain issues too (in physical therapy for several problems and been in it for several months).
My theory is that the body only has so much healing "oomph" to go around.
I got infected with Lyme while in physical therapy and my progress in PT quickly slowed down after infection.
My PCP looked at me really oddly like I was a freak at our last meeting because I wasn't progressing faster (well, F*** Y**, I'd speed things up if I could!).
It just takes so long to heal anything.
I'm sorry you're going through this. The cortisone effects are horrible, but they will taper in time.
Posts: 2839 | From California | Registered: Jul 2012
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I agree. I don't even know what to have them work on in PT. I think that when they do cranial sacral and help with liver issues it really helps. I feel like the PT I can afford has been waylayed by this shoulder issue.
I am out of PT coverage as of November until June when the year starts. But it is worth going. I think it would help if it could be more intensive.
Thanks for understanding.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I don't even know what to have them work on in PT."
I'm PMing you on how I do physical therapy.
That's terrible about the insurance running out. I hope you can get by until June.
Posts: 2839 | From California | Registered: Jul 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Consider treating your shoulder with pulsed magnetic therapy.
Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells.
Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically.
Acute and even chronic pain -also caused by osteoporosis- may disappear completely.
I've been impressed with the SOTA Magnetic Pulser, which fixed my knee pain and any other painful joint I've used it on. I've even used it on a toothache with great results.
It generates a magnetic pulse about every five seconds, and you move the wand around every minute or so. I hate to spend money on things that don't work, but I think this is one of the most helpful things I've bought.
posted
pme, CIPRO is notorius for causing tendonitis and tendon rupture. Your llmd should know this. I am careful and do not do anything in the gym but walk on a treadmill when I am on my limited Cipro doses for bladder symptoms. You may want to look at another drug. Do a internet search on Cipro and tendon rupture.
Posts: 482 | From Oregon | Registered: Feb 2011
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In 2010 left knee acted up, tore a meniscus had it scoped, then my right shoulder began to hurt fall 2011, then r knee and both hips in early 2012.
I had X Rays, cortisone shot in my shoulder so I could do a race that included 2.4 mile swim, PT and it didn't get better.
Within a week of starting Mepron/Zithromax, both hips and shoulder pain started to go away. Aftier having discomfort and pain for 13 months to have antibiotics help so quickly was incredible.
It is hard to deal with docs who don't believe the issues can be from Lyme. The Ortho surgeon who did my major knee surgery went from no it couldn't be Lyme to a year later he had a women he did a scope who had very angry synovium who turned out to have Lyme.
If you do a shoulder scope see if you can get an ortho who specializes in shoulders. Also if they could get sample of your synovium tissue for testing if inflamed. Have it sent to some place like Igenex.
Easy to blame Cipro but pain was there before. Cipro effects achillies tendon most often.
Good luck!
Posts: 120 | From MA | Registered: May 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i have so much to add here but i cant type-it hurts now-not just my hands but my shoulder too
i reacted to cipro and stopped even tho doc said it wasnt cipro
im gladd i stopped
im still reacting to lipitor and it seems to be spreading
pt did a steroid thing to me-not an injection but it went in with electrodes or something...
crazy reaction
im so sick of them making us sicker...i dont believe they dont know...or should know...the info is there
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
WOW, Two words that scare me in one sentence??
Cipro,stops all tendon, fingernail ect. growth, like even the cartilage in the joints.
posted
I too did cortisone shots for shoulder pain before being DX and it made everything worse too. A few months of ABX shoulder pain gone. However those shots brought the "lyme" to the surface creating all sorts of symptoms/issues.
Posts: 68 | From NE | Registered: Aug 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh man, doc switched me from levaquin 400 once a day to cipro 500 twice a day.
gezz...
sometimes i think they're trying to kill us. but i've got to take it for severe diverticulitis.
i'm taking plenty of probiotics and mag.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Just want to clarify. MY point was that i don't think cipro was all that bad (ortho said he sees way more issues with levequin than cipro)
In my case I am allergic to sulfa drugs and also had an allergic reaction to rifampin.
I had shoulder issues prior to starting cipro.
I think that the cipro did its job. I would rather have my right arm be in pain than have my head completely fogged so I cannot function.
I do not have tons of tendon issues and have been very very careful. I think cipro was a miracle, but I did stop. 7 weeks helped more than anything else in 2 years (after the herx).
OK....that's it.
Steroids in the form of cortisone shots were stupid on my part though. I cannot believe how much they threw me into an emotional/anxiety tailspin. But it doesn't seem to be lasting as long as my reaction to orals.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Glad to hear it, pme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I had a pretty big shoulder surgery not long after I started Lyme treatment. That was 2 years ago. I had dislocated it and was left with a very unstable shoulder. It was separating weekly.
Anyway, about six weeks ago I rolled over on it in bed, and "pop" and my shoulder separated. It had been really good up to this point. It was really bothering me so I went back to see the surgeon.
He ordered an MRI with contrast. I got the call last week and there is "evidence of a tear" for me it is my Labrum. I lead a very active lifestyle that I am not willing to give up on, and that means another surgery.
I'm getting it done in three weeks, I am so filled with dread over this. On top of that the Lyme has decided to pay me another visit. Damn.
What does he think you tore? Your Labrum or your rotator cuff? If it's your Labrum and you aren't doing physical activities that your shoulder separates then you really don't have to get it surgically repaired. You could just rehab it.
If it's your rotator cuff then you might want to have them take a look. Sorry you're in this boat too Posts: 845 | From Northeast | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
cipro made my forearms hurt very bad. doc said it only makes achilles hurt. i stopped it and i am glad. that doesnt make sense...your forearms are full of tendons and ligaments. my PT agrees...that doesnt make sense-it would only hurt achilles not other tendons
this cortisone i got thru the skin a few days ago is giving me a very bad reaction. i rolled over in bed and it felt like i had dislocated my knee(i did that once...befor it was replaced-and i guess since its been replaced i cant do it now) but it was a big big pain. it happened a second time and now i have had 24 hrs without it happening but there is a bad dull ache all around the knee where the steroid went in.
also my shoulder is much worse and i am having systemic problems-many-and i wish i had not done that. just putting it out there for others.
i know the 3 shots i had in my knees before surgery wrecked them i was early 30s and needed both knees replaced. and it didnt help the pain except for about 1 week.
so-like maddog-i would warn everyone to be very careful of steroids-any kind except in life-threatenting emergency(randi i was once prepared to take them depending on the results of a colonoscopy-but i didnt have to)-i did take them once for asthma and was ok...
and be careful of cipro and levawuin and the other one
and also statins make a lot of problems with tendons and ligaments
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You said you heard a "pop", right? couldn't you have ruptured a tendon, or something like that? Cipro, levaquin, all the fluoroquinilones I believe are risky for causing tendon ruptures.
Posts: 1748 | From United States | Registered: Dec 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
not sure who you are talking to ellen...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
My right shoulder bicep tendon is torn from the labrum.The tendon flops in and out of a groove that it is suposed to stay in.It needs surgery but I cant aford the co payment.
Cipro blew my tendon in my hand and stoped my rock climbing years ago.
Be careful while on Cipro with work outs!!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by pme:
Then my shoulder pain (which preceded cipro) got really bad, and then one day I heard a "pop" and had some really bad pain after closing a door behind me. (My shoulder had been hurting moderately since June...my PT thought it was related to my liver which has been really challenged throughout the treatment process)
The above was what I was addressing my question to.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen I did hear a pop when I was closing the door, that is why I went to see an ortho.
After xrays and MRI it is not clear if I tore something. As usual, nothing yields clear results. The radiologist's report says that I have a partial tear, but the ortho was not convinced after looking at the MRI himself. So he said possibly "adhesive capsulitis" which is frozen shoulder due to inflammation. It is associated with chronic and autoimmune conditions such as diabetes.
It could have been a tendon rupture but nobody knows.
It would be good to have a clear answer. If it is not torn then my LLMD wants me back on cipro since it is our only option to erradicate the Bart, and it clearly was effective.
Now I am foggy again with no motivation/energy. And I am in constant pain.
The pain lessened somewhat (from excrutiating to not quite) after the cortisone shot but I also feel like it didn't lessen enough to ever ever try a cortisone shot again.
I don't have any answers, but if I did it would help me to decide if I could tolerate the cipro again. I want to. I wish there were folks on here who stayed around long enough to tell us when some of these drugs are effective. I feel for all of you who have responded poorly to cipro. The pain I am feeling......no matter what the cause...is intense.
BTW LLMD said the pain could be related to a herx as well. I don't know because all of my other herx symptoms went away when this began.
So, I still hae not answers but just wanted my perspective to be posted (both positive and negative) in order to help anyone who does a search in the future.
Take good care everyone.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It's weird how lyme hits the shoulder. Both my husband and I have this. I get chiro adjustments and my husband uses a tens unit (he loves it).
-------------------- --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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I had 3 months of treatment for "adhesive capsulitis", "Frozen Shoulder"
The pain was excruciating.
There was a question of a rotator cuff tear and I could not not not bear the pain anymore.
I had surgery last Tuesday 3/19. The results: no tear, but pretty significant scar tissue/adhesive capsulitis which was broken up during the surgery.
The good news is that I do have better range of motion already, although the pain is pretty bad.
Also, the fact that it is definitely adhesive capsulitis finally answers the question of how cipro impacted my shoulder issues. In fact it did not. I do not have tendon issues and have been consistently on cipro from December until now. I have just added tindimax.
The only bad news is that the pain has not yet subsided (but I am only 6 days post op), and that adhesive capsulitis can recur and can take up to 2 years to disappear. Consistent physical therapy will be necessary from here on out.
Also, I seem to be dealing with some post anesthesia depression. I am trying to detox, but am feeling very very down. I am sure that once this clears I will have a different perspective regarding this surgery and where I am right now with Lyme Treatment.
Thanks for listening!!!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Consider treating your shoulder with pulsed magnetic therapy.
Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells.
Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically.
Acute and even chronic pain may disappear completely.
I've been impressed with the SOTA Magnetic Pulser, which fixed my knee pain and any other painful joint I've used it on. I've even used it on a toothache with great results.
It generates a magnetic pulse about every five seconds, and you move the wand around every minute or so. I hate to spend money on things that don't work, but I think this is one of the most helpful things I've bought.
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