posted
Hi My husband has been sick since september of 2007, first symptom being debilitating knee pain, both knees. Inability to stand and walk for short periods. Of course before diagnosis he took steroids now we know that was a no no but nothing we can do now.
He started antibiotic treatment in may of 2008 and just stopped Nov of 2009. He did IV rocephin for 8 months and many oral antibiotics. He was on large doses of orals (typically 3 at a time plus the IV) Most of his other symptoms went away.
But currently he still has this AWFUL knee pain, inflammation, hot to the touch at times. And severe stiffness, especially in the am. He does a desk job part time and at times even going into work to do that is difficult. He is off the antibiotics as they had started causing stomach issues and were not helping the knee pain. I think they prevented it from getting worse but it has not made much improvement if any.
Has anyone else had this issue. What has been helpful?? He has tried lots of supplements for the knee pain, none of them helped.
Way back at the begining before diagnosis they had him do PT for about 6 weeks as they thought he had patella femoral pain syndrome it was horrible and just made things worse. Currently at this point just putting up a christmas tree, going to the dump will exhaust him for a day or a whole weekend.
We left his LLMD as he was dumbfounded as to why he was still in so much pain. He sees a new lyme friendly dr who understands pain better and is looking at what else may be going on. He also has hashimotos diagnosed in the last few months. He has an MRI scheduled today. He has not had one in over 2 years and at this point it may show something.
How do we know if he is in recovery from lyme and may just have something else going on?
Also could it just be lyme arthritis post lyme treatment? And if so what do people do for treatment?
Thank you for any answers or assistance, I have been researching alot and just want my husband back. It is hard to see him in so much pain, 24hours a day. Lynley
Posts: 19 | From Poland, ME | Registered: May 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for help.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
We're all different, so what I say here worked for me. When I started clindamycin antibiotics, it immediately took down joint pain, including strong knee pain, and continues to do so.
I did 150mg every six hours initially, then I herxed, then dropped back to 150mg 2x/day.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I would cross-post this on the roadback.org website. Go to the bulletin board and copy what you have said here.
My pain started exactly the same as your husband. It wasn't until recently that I was diagnosed with lyme/babesia.
AP protocol used for arthritis, not lyme, is low dose minocin. If lyme is definitely in remission, he may still be dealing with some underlying infection. The usual dose is 100 mg minocin bid,(preference to the pelleted form, not the generic) and can be ordered from Canada.
Clindamycin, as Robin states, is another protocol often used very effectively in rheumatic and autoimmune conditions. I love clindamycin IV's, and it is the one drug that has done more than any other.
Are you sure his lyme and co-infections have been completely addressed? If so, he may need to see a an AP doctor, and the moderators on the roadback website can provide one in your area.
nancy
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Thank you that does help, I will check out the website and he has never been on clindamycin. We are not sure if his lyme or coinfectiosn have been completely addressed. He never tested positive for any coinfection accept mycoplasma and the meds he was on should have targeted that. As for lyme how do we ever know if he is cured or been completely treated for that when he still has this one symptom that could be something else? So confusing all of it. Thanks I look forward to looking at the website and any other ideas people may have.
Posts: 19 | From Poland, ME | Registered: May 2008
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posted
Sounds like continuing Lyme infection to me. He likely needs more treatment. I don't think Rocephin does much for arthritis problems associated with Lyme. It's used mostly for neuro problems.
Has he been tested for bartonella and babesia?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
He has been tested many times for all the coinfections none of them showed up positive. His dr did treat him for I think it was babesia based on symptoms, whichever one can cause sweats. He took mepron for I think 4 months.
Posts: 19 | From Poland, ME | Registered: May 2008
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posted
There are many people on the roadback website (www.roadback.org) that ultimately have discovered they have lyme/co-infections. Once that has been uncovered, the treatment usually falls to an llmd. Clearing lyme should resolve the knee pain.
What is your llmd saying about his ongoing symptoms? That would be where I would start. Also, you may already know this, but oral clindamycin is very difficult for some (I'm one of them) to tolerate, and since you've been down the IV route before, may be a good place to start.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
He stopped seeing his LLMD we drove 5.5 hours for a year every 2 months. And made minimal progress, tried multiple meds. His DR was dumbfounded and did not know what to do and had no ideas why after this long he continued to have such severe knee pain. His Dr became very sloppy in his practice not returning calls and no contact between visits, it becaming frustrating----especciaally with a picc line. Plus had missed the elevated thyroid in a bloodtest, well never discussed with us. We decided we needed to see a different doctor and look at other options. His current dr is lyme friendly, she will prescribe more abx if necessary. For now he has been off them as they wrecked his stomach, once he stopped them within a month his stomach was back to normal. Thanks for the heads up on the clindamycin being difficult. Is that difficult stomach wise??
Posts: 19 | From Poland, ME | Registered: May 2008
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posted
Oral clindamycin is notorious for causing c. difficile. With me, it caused severe stomach cramping, heartburn and diarrhea. The IV, however, bypasses the gut, and can be well tolerated. I have had no negative side effects.
If your doctor is willing to prescribe, you may want to try the IV, and see if symptoms improve. For me, I don't know what the clindamycin is killing, I just know it works. It's not part of my lyme/babesia protocol, but I couldn't do without it.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Again, we're all different. Too bad clinda has bothered you, nspiker. I've managed to take oral clinda for almost four years now with no stomach trouble and no C diff.
I've had C diff before from a different abx for something else, so I know what to watch out for symptomwise.
I take probiotics, as do most here who are on abx.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Robin, I wish I could take it orally. Honestly, it would make such a difference if I had the ability to regulate the clindamycin daily. When I did take 600 mg. for a few days, my symptoms improved. I was taking tons of probiotics, and it made no difference.
Is it part of your lyme protocol, or why is it that you are on the clindamycin? I'm curious, because I am not sure what it's actually killing.
Posts: 964 | From san diego | Registered: Oct 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by lturkington: But currently he still has this AWFUL knee pain, inflammation, hot to the touch at times. And severe stiffness, especially in the am.
Lynley
Lynley, Have you looked into Hyaluronic acid?
From what I've read, some people are getting very good results for joint pain. iHerb.com has several brands, and the patient reviews are very good.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
No Carol I have not heard of that. I will look into it. Has anyone done injections of clindamycin directly into the large joint?? Found this on the roadback.org website. Thanks
Posts: 19 | From Poland, ME | Registered: May 2008
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posted
nspiker, oral clinda just works for me. It takes fibro pain to just about zero and greatly diminishes joint pain.
So did you do IV clinda continuously or intermittently?
Iturk - guess you're not going to know re clinda until it gets tried as to toleration -
Posts: 13171 | From San Francisco | Registered: May 2006
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I take clindamycin IV 1200 mg. for seven days straight, then two weeks off. Just begged my rheumatologist to increase it from every four weeks....
Posts: 964 | From san diego | Registered: Oct 2009
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