The Chronicle of the Horse
MagazineNewsHorse SportsHorse CareCOTH StoreVoicesThe Chronicle UntackedDirectoriesMarketplaceDates & Results
 
Results 1 to 16 of 16
  1. #1
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default Lyme Disease Cognescenti - recurrent lyme?

    I was diagnosed with Lyme Disease in early July. I didn't associate the symptoms for a while - first noticed what I later realized was the rash around Memorial Day. Symptoms included fatigue, swollen glands, joint pain (could not raise my arms above my head, could not squat, etc). Started on a month of high dose doxy, all symptoms appeared to resolve by the beginning of September.

    This past week I noticed stiffness in my right knee. My left knee is the one that was dislocated years back and for which I've had surgery - never injured the right one. It has persisted all week. Worse the more I'm on it, but pain reduces with ant inflammatories and heat. No obvious heat or swelling, and no injury, and no reason to believe I'm suddenly getting osteoarthritis in that knee. It wasn't until I realized I couldn't squat with that leg that I thought, "This is just like when I had Lyme" - and then the light bulb went on.

    Did anyone get a recurrent episode after they had Lyme? As far as I can tell, that's my only symptom - right knee. Could it be this isolated? It's been 6 months since onset of treatment. All I can find after a quick perusal of the literature is that in can recur, but given how systemic the disease can be I'm not seeing anything detailed.

    Can anyone weigh in? I'm thinking a call to my primary care on Tuesday might be in order...

    I am thinking this might call for another antibiotic dose.
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  2. #2
    Join Date
    Aug. 24, 2007
    Posts
    895

    Default

    Lyme can absolutely reoccur after the initial infection. Part of the problem with Lyme is that it is poorly understood. Your doctor may or may not be willing to believe it has come back, it probably depends where you live. I would recommend you call your Doctor asap, you don't want to let this go. The longer you have Lyme the harder it is to get rid of.



  3. #3
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default

    This is my thinking. E mail in to him today. He's a good guy and very amenable to discussing things with me. Thanks.
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  4. #4
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,019

    Default

    Well of course I'm going to weigh in on this thread!!

    I've had Lyme four times (once it recurred, so five bouts total).

    I've had different symptoms each time. This most recent time I had severe joint pain. My lyme doctor treated me with 200 mg/doxy twice a day (so 400 mg total) for five weeks AFTER my symptoms resolved. It took 2 1/2 months for my joint pain to go away, so 2 1/2 months + 5 weeks means I've been on doxy for more than three months. A lot longer than your doctor treated you.

    I have one more week of the doxy and then I'm done, and I hope *I* don't relapse!



  5. #5
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
    Posts
    16,638

    Default

    SMF11 is correct. What length of time and what dose of doxy were you on? Was it at least 400 mg/day? Were you tested and treated for co-infections? Don't screw around with it. Get yourself to a Lyme literate doctor. Odds are you will need 6 months of treatment since it's a relapse. My doctor switches things around since the Lyme spirochete is believed to take different forms, an L form (without a cell wall), the spirochete and a cyst form for which Flagyl or Tindamax is used. If you're under treated at the outset, it is much more difficult to get rid of it.

    Funny thing is, I knew an infectious disease doctor back in Maryland about 8 years ago. He swore 2 weeks to 4 weeks of doxy or amoxicillin was all the treatment you needed. Until his child was diagnosed with Lyme. She got 3 months of treatment. Interesting, isn't it?

    There's a lot of excellent information out there. The Lyme Disease Association has a good website. Lymenet.org is a forum that can be very helpful. Some crazies too, but don't all forums?



  6. #6
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,019

    Default

    There is a LOT of craziness in the lyme area, from the denial side to the you-must-be-on-antibiotics-for-the-rest-of-your-life side!

    Dressage Geek, I know you are in academia, if you want to research the disease at all, one of the best websites is Columbia University Medical Center's Lyme Disease Center. It has a ton of information, including abstracts of recent research. Also in trying to figure out treatment guidelines (because they vary wildly) I think the ILADS (don't actually know what the acronym stands for International Lyme something or other ) guidelines are the best.



  7. #7
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
    Posts
    16,638

    Default

    I keep forgetting about ILADS. Great place to start. Also CALDA (California Lyme Disease Association) and LymePA.org (LDA of Southeastern PA). Lots of good info on all of the sites.



  8. #8
    Join Date
    Mar. 11, 2006
    Posts
    214

    Default

    I have two friends that have been treated intraven. for a month. They had both had it a few times previously.



  9. #9
    Join Date
    Oct. 24, 2003
    Location
    The rolling hills of Virginia
    Posts
    5,892

    Default

    Lyme in the knee joint is Lyme arthritis. It is typically in one large weight bearing joint (aka, one knee). I was diagnosed with Lyme arthritis in the fall of 2009. I believe I contracted it in the summer of 2008.

    One 8 week course of Doxy did not do it for me. I did a second course of ABs - this time Ceftin (much more expensive) and that has done the trick. I had few classic symptoms of Lyme, and my knee issues were obscured by ACL surgery and follow up surgeries due to a not great 1`st surgery and the Lyme arthritis. However, I am symptom free from everything but my knee at this point.

    Lyme arthritis can cause Rheumatoid like symptoms/reactions in a joint. The big difference is that it is in only ONE joint.

    I gave up on all the LD websites and orgs. They did me no good and depressed the heck out of me. I found a good primary care doctor working with a good rheumatologist were my best bet. Because I do have bad osteoarthritis as a complication of my injury and bad reconstructive surgery, I also have to have my ortho involved.

    But now, after almost 3 years, I am pretty close to having a functional knee. Sometimes you can't even tell!

    My best advice to you is that if a second round (8 weeks) of a better AB doesn't do it for you, get a Rheumatologist involved. The Lyme Arthritis can cause an immune system reaction (completely localized in the joint capsule) and should be treated like a rheumatoid joint. I am hoping to wean off the rheumatoid drugs starting in the spring - after a year of treatment.

    Don't delay! This is causing damage to your knee joint. But it absolutely can be stopped with the right people involved.

    Hang in there and good luck. There is not a huge amount of info for Lyme arthritis out there, but I can try to point you toward the articles I found that put me on the right path.

    FWIW - al those people who suffer horribly with Lyme and Neuro Lyme have had it for many, many years. Anything under a couple of years usually responds VERY well to a course or two of good ABs and good follow up. Don't despair! Been there, done that - not helpful! Just get it fixed and carry on.

    SCFarm
    The above post is an opinion, just an opinion. If it were a real live fact it would include supporting links to websites full of people who already agreed with me.

    www.southern-cross-farm.com



  10. #10
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,019

    Default

    Quote Originally Posted by LLDM View Post
    L
    Lyme arthritis can cause Rheumatoid like symptoms/reactions in a joint. The big difference is that it is in only ONE joint.

    I gave up on all the LD websites and orgs. They did me no good and depressed the heck out of me. I found a good primary care doctor working with a good rheumatologist were my best bet. Because I do have bad osteoarthritis as a complication of my injury and bad reconstructive surgery, I also have to have my ortho involved.
    SC, Lyme can be in one joint or many -- I had both ankles, both knees and both hips hurting. THis is one reason why it is so confusing -- there is no one symptom, or one set of symptoms. It varies wildly!

    Agree on all the lyme websites out there -- extremely confusing and very depressing. However, that's why I keep recommending the two I do -- after sifting through all the sites because it is my son who's so sick, these are the two not crazy sites. Still a bit depressing, yes, for someone who's had it for years, but you can't let that put you off getting information you need.

    Ceftin is highly recommended, your doctor did a good job putting you on it.



  11. #11
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default

    I did 4 weeks high dose doxy. Was symptom free from end of August/beginning of September until last week. This time (unlike the initial diagnosis!) I am right on top of it. Did check out NIH, did check out ILAD, have the e mail in and will just make time to see my primary care. My asthma guy is in the allergy/rheumatology dept, so I am set there, and Lyme is not uncommon here.

    Thanks so much for feedback. There was no way I injured anything - weather has precluded doing much of anything! Including getting to Pilates! But when I went to yoga last Thursday, there were things I simply could.not.do.

    The good news is, I lost 15 lbs last round of doxy, so that could be my new year's diet!

    And even though staying out of the sun sucked in July and August, it is incredibly easy to do right now, because we have none and will be getting none for weeks.
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  12. #12
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default

    *sigh* got an email back that it could be patellofemoral pain and to ice and take high dose NSAIDs for the next week unless it worsens.

    Uh, no. I have had patellofemoral pain due to an injury to my left knee years back, and this.is.not.it. So I reiterated the details and if he's not amenable I'll just call rheumatology and get a consult.
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  13. #13
    Join Date
    Oct. 24, 2003
    Location
    The rolling hills of Virginia
    Posts
    5,892

    Default

    Quote Originally Posted by SMF11 View Post
    SC, Lyme can be in one joint or many -- I had both ankles, both knees and both hips hurting. THis is one reason why it is so confusing -- there is no one symptom, or one set of symptoms. It varies wildly!

    Agree on all the lyme websites out there -- extremely confusing and very depressing. However, that's why I keep recommending the two I do -- after sifting through all the sites because it is my son who's so sick, these are the two not crazy sites. Still a bit depressing, yes, for someone who's had it for years, but you can't let that put you off getting information you need.

    Ceftin is highly recommended, your doctor did a good job putting you on it.
    Lyme Arthritis is primarily in one, large, weight bearing joint. Like Rheumatoid arthritis, it is problem with the lining of the joint capsule. This is a very specific issue.

    It is different from aching joints which are somewhat common (as common as any of the bizarre combo of symptoms you can get with regular Lyme Disease). That is, IME, part and parcel of the "flu like symptoms" of regular Lyme.

    DGRH's symptom of ONE KNEE is a big red flag for Lyme Arthritis, which is why I bothered to chime in at all. It is also more rare than reg. Lyme and often (even more than reg. Lyme) missed or misdiagnosed.

    In no way am I dismissing the aching joints of reg. Lyme. It is awful. It's just not the same specific thing.

    I never found anything on Lyme Arthritis on any of the regular Lyme Org. sites. I found that info. in academic research papers, complete with studies, trials and recommendations for treatment. And like rheumatoid arthritis, it is very damaging to joint cartilage. Getting rid of Lyme doesn't automatically reverse or stop Lyme arthritis.

    I hope your son is able to overcome this. It is a tough disease.

    Here is an non academic link to an article on Lyme Arthritis in Juveniles. It is a good description and explains the differences well.

    http://www.printo.it/pediatric-rheumatology/information/UK/11.htm

    SCFarm
    The above post is an opinion, just an opinion. If it were a real live fact it would include supporting links to websites full of people who already agreed with me.

    www.southern-cross-farm.com



  14. #14
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,019

    Default

    Thanks for that, SCFarm -- there is always more for me to learn about Lyme. Good that you can offer such targeted advice to Dressage Geek.



  15. #15
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default

    My MD came through - when I emphasized that I am aware of the discomfort all the time, he said I might as well go to a rheum. as he would just refer me anyway. I have an appt for tomorrow.

    I did not think it was swollen. But when I measured, my right knee is an inch more in diameter than my left.

    Thanks for chiming in. I want to nip this in the bud.

    The good news is, if I have to go back on antibiotics there is NO SUN right now so no reworking my schedule. And I'm getting to the barn maybe 2 days a week, and I am lucky if the indoor isn't frozen one day out of 10, so if I have to be down for a bit, this would be the time.
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  16. #16
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
    Posts
    16,638

    Default

    Oddly enough, I happen to have Lyme Arthritis in two finger joints. Diagnosed by aspiration of fluid. By the way, doxy is not the only antibiotic for treatment. And Ceftin is not on the top of the list for Lyme treatment drugs that I've ever heard of. For a resistant case, most lyme doctors will use a combination of drugs. Like Bactrim DS with Levaquin for example (which also attacks Bartonella). If you're on long term treatment, something like Flagyl or Tindamax is also used, since it is believed that Lyme can form a cyst form that is resistant to most antibiotics, but can be affected by a Flagyl type drug.

    The second tier is usually something like Biaxin or Zithromax (but for up to 2 months). It's been a long time since I've been on combo doses..I would have to dig up info on what was mixed with what and why. I did have Babesiosis and Bartonella as co-infections too. If you have a very resistant case...consider that you may also have a co-infection.

    Fortunately, more and more doctors are beginning to recognize Lyme and realizing that, unless you catch it early, 4 weeks of antibiotics will not get rid of it.

    Do your homework, and continue to do your homework. Unfortunately, Lyme diagnosis and treatment has become very political, so you must choose which way to go. Choose the best for you, but try to be open to new ideas.



Similar Threads

  1. Lyme disease
    By seejp083 in forum Horse Care
    Replies: 33
    Last Post: Apr. 26, 2012, 01:06 PM
  2. Lyme disease
    By Skyedragon in forum Horse Care
    Replies: 3
    Last Post: Dec. 7, 2011, 04:48 PM
  3. Lyme disease
    By red star in forum Horse Care
    Replies: 2
    Last Post: Aug. 2, 2011, 09:43 PM
  4. Lyme Disease?
    By Milocalwinnings in forum Off Topic
    Replies: 10
    Last Post: May. 28, 2011, 04:17 PM
  5. Lyme Disease
    By Lone in forum Horse Care
    Replies: 3
    Last Post: Jan. 12, 2010, 12:21 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •