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Chronic Lyme Disease in Humans

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  • #21
    Be very careful going to a Rheumatologist if you have lyme UNLESS they are lyme literate (and they are very few and far between). They do like to treat with steroids and there is nothing worse for lyme than steroids. Just really ramps up the infection and makes it even more difficult to treat.

    Steroids do have their place, but not in lyme treatment.

    According to my doctor, one of the symptoms of lyme is shooting pain from the hip down the leg...which I had. Which is now gone, with treatment.


    • #22
      Freisancross, one the the first treatments given to my daughter IV that made a huge change was both Rocephin and IV clindamycin. The difference was huge in just a week. She went from being unable to walk to walking without crutches.


      • #23
        Originally posted by LauraKY View Post
        Be very careful going to a Rheumatologist if you have lyme UNLESS they are lyme literate (and they are very few and far between). They do like to treat with steroids and there is nothing worse for lyme than steroids. Just really ramps up the infection and makes it even more difficult to treat.

        Steroids do have their place, but not in lyme treatment.

        According to my doctor, one of the symptoms of lyme is shooting pain from the hip down the leg...which I had. Which is now gone, with treatment.
        just wanted to add - A Rheumy who specializes in AS will NOT treat with steroids. But any Warning is always good to know.

        And as far as finding a Rheumy who is Lyme literate - good luck. Here in Canada, I had trouble enough finding a doctor who knew much about their own specialty. My present Rheumy, the exception, of course.

        Anyways, didn't mean to hijack the thread - just wanted to offer another possibility or complication from my own journey - like Mystery Diagnosis. Especially since AS often manifests AFTER infection. Perhaps the Mayo Clinic can help?
        “Your appearance should reflect the care you take in every aspect of your horsemanship... feeding, grooming... everything you do, from the barn to the show ring. Class, people, class…" George Morris


        • #24
          Originally posted by LauraKY View Post
          Freisancross, one the the first treatments given to my daughter IV that made a huge change was both Rocephin and IV clindamycin. The difference was huge in just a week. She went from being unable to walk to walking without crutches.
          When I was on the IV rochephin it worked miracles. Now lets all just cross our fingers in hopes my insurance company gives it to me for the 6 months or so I need.

          I am so glad and sad at the same time to be able to post about this with other riiders. Glad that there are other horse people who know what you are going thru and have been there, and sad that we are all there


          • #25
            For everyone that has had the IV stuff done did you have a pick line or a port? I had a port the first time and my chest area still hurst a year later. I am afraid that it is going to hurt even more if I get it put in again.

            Did anyone who had a pickline have any problems with it for working? I mean mucking stalls, feeding, etc?

            I went with the port the first time but now I see they have pickline protectors http://images.google.com/imgres?imgu...26tbs%3Disch:1

            for protecting it when you shower and such. I just don't know which way to go. I had the port so that my arms were free but my chest muscle still hurts.


            • #26
              Daughter had both. Much preferred the port to the pickline. Much more risk of infection with the pickline. She was even able to sail with the port (not to mention mucking, etc.)

              True Grit, although Humira is not a steriod, it does tamp down your immune system, which is the last thing you want with Lyme.

              As for the Mayo Clinic, those of you suffering Lyme probably know there are two schools of thought on treatment. One that says you can treat with 4 to 6 weeks of antibiotics and anything else is post Lyme syndrome. The other treats until symptoms are resolved. Mayo Clinic follows the first protocol vigorously. Not a good treatment option for a chronic lyme disease sufferer.


              • #27
                Thanks LauraKY. I had thought there would be more of a chance of infection with the pickline. Just know that it is going to hurt quite a bit when they have to go thru all the scar tissue this time on top of how much it hurt when they took it out due to the missing muscle area.


                • #28
                  Other nice thing with the port, when you know the nurse is coming to replace the line, you can pull the needle and line and have a nice, hot, relaxing shower!
                  My daughter got to the point where she could stick herself. Gave her own IM bicillin shots too. But she's has the most incredible pain threshold (gets her in trouble a lot, though).


                  • #29
                    GaellentQuest, make sure your docs leave you on oral antibiotics for at least six months after the IV. Then taper off. Have you been tested for other tick borne infections like Babesiosis and Bartonella? I know in a lot of cases, that is why the Lyme is so resistant to treatment...there are other infections going on also.


                    • #30
                      I have Lymes, Babesiosis, and Bartonella. I have not been off antibiotics for almost 4 years. The second they pulled me off the IV meds he put me back on orals. I am very lucky to have a good Lymes doc near me and doesn't think I am nuts or faking it like some doctors think people are : (

                      I just hope the insurance compnay approves the amount of time he wants me on the IV this go around. Crossing my fingers


                      • #31
                        Well I go in on the 11th for my consult to put my port back into my chest. I am going to get some time in the saddle before surgery even if it takes a bottle of pills to make it happen, since when it is I am banned from working the horses under saddle. Now it is time to play russian rullet with the insurance company on how long I can get treatment. Wish me luck


                        • #32
                          international lymes org

                          I have a close vet friend who is active in this group. She suggested that you all might want to check it out. It gives a lot of state of the art info.

                          To give you hope, she has been quite sick with chronic lymes and is always actively working on it. She is still riding 100 mile endurance competition and placing and getting best conditioned horse awards. She is also one of the state of the art researchers in horse lymes. I recognize the many symptoms you have talked about, as ones she has dealt with.


                          Good luck with the insurance battles!
                          Intermediate Riding Skills


                          • #33
                            I recently had my second western done and now have slightly confusing results. The first lyme test (by western) showed 2 of 3 bands for IgM and 3 of 10 IgG. Now, a month later, I have nothing showing up.

                            I'm assuming that the hide-and-seek test results are fairly common (even by western blot which blows my mind a bit). My question is does this mean I've ventured into the "chronic" stage? My doctor is putting me on three weeks of doxycycline as of Monday. I realize we're none of us experts but experience counts for a lot!
                            Forward momentum!


                            • #34
                              I work in Home Infusion billing/collection and from my experience can advise you to make sure the doctor and Home Health get IV Rocephin and/or Clindamycin
                              They will be asked to document need and provide physical history, progress notes, etc.

                              I just fought (and won!) a lengthy battle with Anthem BC/BS to pay for a patient's course of therapy.
                              Dr had started treatment with Clindamycin which they paid for, then when patient was switched to Rocephin suddenly authorization was required & claims started getting denied.

                              GaellantQuest - if you did not get pre-auth don't back down, they can
                              post-authorize treatment you just need to wear the bastards down with persistence.
                              *friend of bar.ka*RIP all my lovely boys, gone too soon:
                              Steppin' Out 1988-2004
                              Hey Vern! 1982-2009, Cash's Bay Threat 1994-2009
                              Sam(Jaybee Altair) 1994-2015


                              • #35
                                Bell's Palsy this week....

                                Had been feeling draggy again, woke up with a bit of Bell's Palsy on the right side of my face this week-common with Lyme. Ironically, the same morning as my Dr. visit!! Back on Doxy for 6 weeks...yuk!

                                Oh well, now my smile is as twisted as my personality

                                Hope everyone suffering is feeling better soon...


                                • #36
                                  Oh no spurgirl, hope your 6 weeks go well. I can't take Doxy, I crawl on the floor and vommit a few min after I take it.

                                  I over did it this weekend. Bad girl. Sad thing is that over doing it was only going to 3 stores on Sat and Sunday and being awake and moving for more then 4hrs in a row.

                                  I promised my husband Sleeping Beauty would get her rest and stay in bed today. Won't take much to keep that promise, I just woke up to take my oral meds to help heal my stomache (though many cameras up the bumm and down my throat says I am healthy, ya right) and then back to bed.

                                  Everyone keep their spirits up, and us horse people can get thru anything! Insurance companies be darned!

                                  2Dogs- I have to have tests every 2 weeks, and I keep a daily diary of how I am feeling (soon to be seen on my very own site to log how I use to be and how I am now, somthing to do )


                                  • #37
                                    Gallant Quest,
                                    By any chance were the 2 stores the tack shop and the feed store?

                                    You have picked a great user name. It does fit you, along with courage. I hope that the meds work quickly to clear the lyme brain. You bring so much to the forum.
                                    Intermediate Riding Skills


                                    • #38
                                      Hehe how did you guess? Though I had my husband drive. Turns out I am 'homebound' according to my insurance company. Not allowed to drive or go anywhere by myself. grrr. Beautiful day and I wish I lived at the place we are going to move to in May (ahhh 35 stall barn, 40 acres, and 3min from downtown) to at least brush my 2yr when I feel well.

                                      Well everyone, Sleeping Beauty is off to get her 15hrs : )


                                      • #39
                                        Started my own life with lyme blog to record how I am that day and such. Am a few days behind as I wanted to put in what was in my written journal the doctor wanted me to keep and to have it appear in order (newest day to oldest day etc) http://mylifewithlyme.com/


                                        • #40
                                          I've just been diagnosed with neuro Lyme Glad to know I'm not just getting stupid but that I have bugs in my brain....maybe?

                                          My doctor recommended Acetyl-L-carnitine for the brain stuff. I'm going to start with it tonight! Anyone else tried it?
                                          Forward momentum!