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Chronic Lyme Disease in Humans

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  • #81
    I gave a lesson for the first time since having my surgery and being on meds tonight! I am on week 5 of my IV meds and doing better, but I am now on pasture rest instead of stall rest and if I don't behave myself my husband will put me back into the stall. lol I go see my doctor tomorrow and I think he is adding in the oral Rifampin to go along with my IV Rocehpin. And my husband did his first needle change in my port without the nurse here and did a great job : )

    Comment


    • #82
      Gold Stars for You

      congratulations to your husband! He gets gold stars for bravery!

      You get gold stars for behaving yourself well enough to get out of the stall.

      Please remember to keep your eye on the prize at the end of this procedure.

      Getting through the weeks of rehab is like riding a test: focus on the immediate one movement or obstacle at a time, knowing it brings you closer to the goal.

      I know you can do it well.
      Intermediate Riding Skills

      Comment


      • #83
        Yes he does doesn't he?

        I have been a very good girl when I am out of my stall, but am stuck in it today. Today is a bad day. Don't know if it is the die off from week 5 of IV meds or what.

        You are right there is one immediate goal: Get healthy. That is what my husband says and he is right. I need to get healthy, and then in the future get back in the saddle.

        Comment


        • #84
          Updated my blog http://mylifewithlyme.com/ gives me something to do at the end of the day : ) Hope all you lyme riders are doing well, and if you can ride right now in this beautiful weather ride a little extra for me

          Comment


          • #85
            A question ...

            I was diagnosed with Lyme last year and treated with Doxy. I would have to look at my records to determine how long I was on, but it was something like 6 weeks.

            I have a question - can Lyme "flare up" or do you have to get bit again to have symptoms? I recently had the same exact symptoms that I had last year, and am worried. I am doing some research on the websites included in this thread, but also thought I would just come out and ask.
            Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
            Email for Questions/Clinics/Sponsorship

            Comment


            • #86
              It's possible you were bitten again, but, in all likelihood you were probably inadequately treated. You need to find a lyme literate doctor. You can look on lymenet.org for recommendations or contact the Lyme Disease Association (LDA) for a list of physicians. If you're in Maryland, PM me, that's where my doctor is and he is absolutely wonderful! Just aggressive enough with treatment, but not too aggressive.

              Comment


              • #87
                Sometimes people can be misdiagnosed with chronic lyme when they actually have chronic fatigue or fibromyalgia. Just something to think about.
                Forward momentum!

                Comment

                • Original Poster

                  #88
                  Tassie- Yes, there is a good chance that you may have been re-infected or that the Lyme has come out of a type of remission. As you have been advised, you need to find a Lyme Literate Doctor who will review you symptons and perform the proper tests to confirm your health issues. There are very specific blood work tests that a "LLMD" will request that a non LLMD wont (Non LLMD's do not believe in Lyme and will most often bash the whole form of treament that LLMD doctors prescribe).

                  I was first exposed in 2003, and treated with doxy for 2-3 weeks and felt better. I slowly started to have the "I think I am getting old" symptoms until last march when I was bitten again by a tick, causing me to be bedridden for 3 weeks. So you could have been re-infected as well as be exposed to a different tick born bacteria that has caused your Lyme to reappear.

                  Unfortunately, Lyme Disease has become more of a political issue than a health concern, which is frightening. I think as horse owners, many of us have seen our horses diagnosed with Lyme, sometimes multiple times. So if the horses are getting (dogs too) why would humans be immune?

                  There is also a drama fest over long term antibiotic's being prescribed for Lyme (namely Doxy). Funny, dematologist prescribe long term doses of Doxy and other similar Lyme drugs for acne but it is not considered safe for people with Lyme.

                  And yes, you could also have Fibromyalgia or chronic fatigue so do not cross those off your list. You could also be developing arthritis (depending on your age) as well as Lupis, MS, ALS, Rheumatoid arthritis, HIV, Mono and a few other immune supressent diseases. Oh, and you could just be depressed too.

                  Sorry to sound snarky but to get an official diagnosis of Lyme is not easy and you may have to be tested for many of the diseases I just mentioned to rule them out. Lyme, especially chronic Lyme is not that easy to be diagnosed.

                  PM me for some other forums and doctors that I have either seen or know of people with Lyme have seen to make your possible diagnosis of Lyme (either if you have it or not) easier. Most patients with chronic lyme have gone through multiple physicians to get to the right one. I have been to 9 different doctors and thats a whole lot of co-pays.
                  Keep in mind...normal is just a dryer setting.~anonymous

                  Comment


                  • #89
                    I brought up alternative illnesses because I had the reverse experience. I saw an LLMD who started treating me rather aggressively for lyme when it turns out I don't have it. I was on a LOT of nasty drugs for no reason.

                    I'm not saying you DON'T have lyme, just saying to have all the possibilities checked out. Long-term abx are nothing to sneeze at (even if it is more and more commonly done). I'm skeptical of everything by nature so I'll go through a huge round of testing before getting treatment.

                    Originally posted by Friesiancross View Post
                    Tassie- Yes, there is a good chance that you may have been re-infected or that the Lyme has come out of a type of remission. As you have been advised, you need to find a Lyme Literate Doctor who will review you symptons and perform the proper tests to confirm your health issues. There are very specific blood work tests that a "LLMD" will request that a non LLMD wont (Non LLMD's do not believe in Lyme and will most often bash the whole form of treament that LLMD doctors prescribe).

                    I was first exposed in 2003, and treated with doxy for 2-3 weeks and felt better. I slowly started to have the "I think I am getting old" symptoms until last march when I was bitten again by a tick, causing me to be bedridden for 3 weeks. So you could have been re-infected as well as be exposed to a different tick born bacteria that has caused your Lyme to reappear.

                    Unfortunately, Lyme Disease has become more of a political issue than a health concern, which is frightening. I think as horse owners, many of us have seen our horses diagnosed with Lyme, sometimes multiple times. So if the horses are getting (dogs too) why would humans be immune?

                    There is also a drama fest over long term antibiotic's being prescribed for Lyme (namely Doxy). Funny, dematologist prescribe long term doses of Doxy and other similar Lyme drugs for acne but it is not considered safe for people with Lyme.

                    And yes, you could also have Fibromyalgia or chronic fatigue so do not cross those off your list. You could also be developing arthritis (depending on your age) as well as Lupis, MS, ALS, Rheumatoid arthritis, HIV, Mono and a few other immune supressent diseases. Oh, and you could just be depressed too.

                    Sorry to sound snarky but to get an official diagnosis of Lyme is not easy and you may have to be tested for many of the diseases I just mentioned to rule them out. Lyme, especially chronic Lyme is not that easy to be diagnosed.

                    PM me for some other forums and doctors that I have either seen or know of people with Lyme have seen to make your possible diagnosis of Lyme (either if you have it or not) easier. Most patients with chronic lyme have gone through multiple physicians to get to the right one. I have been to 9 different doctors and thats a whole lot of co-pays.
                    Forward momentum!

                    Comment


                    • #90
                      Thanks so much for the replies to my question.

                      I want to my PT yesterday and he is running bloodwork. Basic Metabolic panel, CBC Platelets & Diff, CRP, Sed Rate, Lyme Titer IGM, and Rocky Moutain Spotted Fever.

                      Hopefully I'll get the results soon. Yesterday all day I felt ok. But I was up last night almost all night aching from head to toe, very shaky and weak.

                      I certainly wouldn't rule out other possabilites such as fibro & mono, but I know it's not depression as I'm actually very happy right now with my work and personal life. And I just have too many plans to be this sick right now! Not that I have a choice.

                      Tylenol helps with the head to toe aches, but I can't live like this and really REALLY hate to be missing any time from work!
                      Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
                      Email for Questions/Clinics/Sponsorship

                      Comment


                      • #91
                        I received my bloodwork results today.

                        Lyme & Rocky Mountain fever negative.

                        Sed Rate normal.

                        C-Reactive Protein 70.7 mg/l
                        WBC 2.7
                        Lymphs (Absolute) 0.5

                        My PT is trying to get me in with another doctor due to the CRP.

                        I still feel horrible. I'm functioning but I'm weak and shaky, my body aches and my appetite is off.
                        Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
                        Email for Questions/Clinics/Sponsorship

                        Comment


                        • #92
                          Tazzie, I hope they're worried about your low WBC too. Were you tested for erlichiosis? That can cause a drop in WBC. I see you're in Area II, we're from Maryland and had between the two of us: Lyme, erlichiosis, bartonella and babesiosis. Pretty much everything except Rocky Mountain Fever. What test was run, Western Blot or just a ELISA? The ELISA titer has at least a 50% false negative rate.

                          If other things are ruled out, you need a lyme doc!

                          And fibro is not a diagnosis, it's a constellation of symptoms. They're not sure what causes it, but it can be a catch-all term for "I don't know what's wrong with you." Lyme and other tick borne diseases can cause fibro symptoms.

                          Comment


                          • #93
                            Newbie Lyme "d person here!

                            Hi,
                            Well today I got my bloodwork back.......Symptoms were tired all the time,PAIN in the muscles and joint. days hen I just couldnt get up! I ride and run and that has come to not quite a halt as I make myself do it but sure do pay later.

                            Anyway I believed after reading about fibermylagia that fit me to a T. So I asked to be tested for everything to include HIV as do to my job I had a exposure. So today was told I tested positive for lyme and my CRP was off? but everything else came back good(thank God) I have also been seeing a ortho for what I thought was a pinched nerve who believes I have Arthritis and I am waiting for my MRI results for that. So Im wondering if these problems are related. I am being sent to a rheumatoidiologics by both Drs. I am just sick or being in pain ALWAYs and having no engery as lazy is not something I have ever been.

                            I am 40 and was a very fit person up til about a yr ago.

                            I realized there is no point to this post just needed to vent I guess.
                            thanks

                            Comment


                            • #94
                              spook1, Lyme is a disease that you, as a patient, need to be very informed and proactive about. Do your research. Check out the Lyme Disease Association website. Take a look at lymenet.org (a forum for Lyme disease sufferers. You may be offered inadequate treatment. Unfortunately, there are two schools of thought on Lyme disease treatment in humans. One says treat till the symptoms are gone, the other says 30 to 45 days and anything else is post-lyme syndrome.

                              In addition, a lot of people have co-infections (Bartonella, Babesia, Erlichiosis, etc) which need to be treated in order to resolve the Lyme.

                              In my experience, a rheumatologist is not as informed on the treatment of Lyme disease as some other doctors. Unfortunately, a lot of infectious disease doctors also follow the 30 to 45 day treatment route. There's a lot of politics involved in this (along with the insurance companies) and for the life of me, I can't understand why.

                              Best of luck. A diagnosis is a good first step. By the way, May is Lyme Disease month, for whatever that's worth.

                              Comment


                              • #95
                                I have been on line researching all I can. I did not realized the doxy would make me so sick>>>>>>>>>> ugh......

                                Comment


                                • #96
                                  Originally posted by spook1 View Post
                                  I have been on line researching all I can. I did not realized the doxy would make me so sick>>>>>>>>>> ugh......
                                  Spook - I bought an over the counter pre-biotic that I took with the Doxy. I tend to have general stomach issues and this helped 100%.
                                  Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
                                  Email for Questions/Clinics/Sponsorship

                                  Comment


                                  • #97
                                    Originally posted by LauraKY View Post
                                    Tazzie, I hope they're worried about your low WBC too. Were you tested for erlichiosis? That can cause a drop in WBC. I see you're in Area II, we're from Maryland and had between the two of us: Lyme, erlichiosis, bartonella and babesiosis. Pretty much everything except Rocky Mountain Fever. What test was run, Western Blot or just a ELISA? The ELISA titer has at least a 50% false negative rate.

                                    If other things are ruled out, you need a lyme doc!
                                    No to the erlichiosis, I'll add that to my list of possible things to test for. The Lyme test was the Western Blot.

                                    As for the WBC - I'm not 100% what to make of it. I don't know if 2.7 is very low or just borderline.

                                    I've been thinking about the CRP levels. I have an undiagnosed neck injury from 2005 (I was kicked by a horse in the face, the neck is a whiplash type injury). The neck is a constant pain that nobody can find a reason for (gotta love that). I get nerve block injections about twice a year and live on a decently low amount of vicodin daily. This could be the reason for the CRP levels, at least based on the little bit of research that I have done. As far as I know this is the first time that my CRP levels have been tested.

                                    I did have extensive bloodwork checked in August 2009 when I was diagnosed with Lyme. At that time no CRP test was done, and the WBC was 6.1 & Lymph (Absolute) was 1.7, both normal. Nothing else abnormal in the August 2009 bloodwork except for the Lyme.
                                    Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
                                    Email for Questions/Clinics/Sponsorship

                                    Comment


                                    • #98
                                      I didn't realize you had already had and been treated for Lyme. If it was a short term of antibiotics, odds are it was inadequately treated. Lyme is great at hiding from a test. The Western Blot only measures antibodies to an infection. If your body is not mounting a defense it could be an active infection that would not show up on the Western Blot. Labs differ on the range for WBC count, but normal range is usually 4.8 to 10.8. So yes, it's low and definitely worth looking in to. Unless it's a test error, which is possible, something is depressing your WBC count.

                                      This is from the RN Continuing Education Website:


                                      "Leukopenia occurs when the WBC falls below 4,000. Viral infections, overwhelming bacterial infections, and bone marrow disorders can all cause leukopenia."
                                      It can also be medication related.

                                      Don't let your doctor blow you off. If you're in Area II you should have some other medical options. My family went 10 years with improper diagnosis and limited treatment.

                                      Comment


                                      • #99
                                        Update

                                        Just an update.

                                        I hadn't seen a doctor with my blookwork results b/c I couldn't find anybody close with an opening, and after research I thought that the sed rate was probably due to my undiagnosed neck pain.

                                        Today I saw my physiatrist whom I see monthly for pain meds. I have him a copy of the bloodwork results for his records. Right away he was concerned about the sed rate and ordered some additional tests:

                                        ANA with Titer
                                        CBC Diff
                                        RF
                                        Sed Rate
                                        TSH
                                        Urice Acid/Serum

                                        At this point I'm not 100% what all these tests mean, but I should have the results in a few days.

                                        Currently I feel pretty good other than the usual neck pain issues that I have, and a growing tolerance of the pain meds.
                                        Katie Ruppel & Yellow Rose Eventing *Website* & *Facebook*
                                        Email for Questions/Clinics/Sponsorship

                                        Comment


                                        • another chronic lyme

                                          I was diagosed five years ago with the classic bulls eyes etc. and doxy did not help, but in concert with Amoxycillan, stopped the pain and fatigue. I get a particular pain that is very indicitive, to me, that I am having a relapse...it is a sharp sharp deep pain down my thighs that debilitates me and causes me to have to physically pick up my legs one at a time to move them when it is at its height. My knees swell and are very painful and I experience profound fatigue. After three relapses I developed an allergic reaction to the meds and switched to Ciproflaxxin. Twice I have taken Cipro for flareups. My doubting Thomas GP says it should not work. But it does, or atleast has twice.
                                          My relapses have coincided with returning north during foaling season. foaled 11 this year, with some traumatic ones, and lost one to VULTURES in the field that had been born three weeks prematurely....that blew my mind, and I rescued another from them four days later, but that is another story.....THEN the Lyme symnptoms set in . Obviously stress related.

                                          It is very comforting to read that others have experienced these relapses. My GP does not believe in them, but blood work has ruled out her other theories.
                                          "Over the Hill?? What Hill, Where?? I don't remember any hill!!!" Favorite Tee Shirt

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