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Chronic Lyme Disease in Humans

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  • Chronic Lyme Disease in Humans

    Is anyone out there suffering from Chronic Lyme disease (human form, not horse). I was dx. in 2006 but was originally exposed in 2003. Currently becoming more physically and emotionally debilitated everyday. Just moved horses off the farm because I could no longer physically handle taking care of them. Riding...lol, what the heck is that? Last time I rode in October of 2009, I was bedridden for a week. Currently on antibiotic treatment with top Lyme doctor on East coast but treament is worse than the disease. Anybody been through or going through what I am in the middle of? I have lost my job, and about to loose my horses...any help or suggestions are welcomed.
    Keep in mind...normal is just a dryer setting.~anonymous

  • #2
    I have had Chronic Lyme for many years now....First diagnosed in 1992. About 2 years ago I also contracted Babesia/Babesiosis, which is another, equally horrible tick disease. I have been on numerous courses of pretty heavy duty antibiotics on and off for years...

    The treatment IS hard, if the pills make you nauseated, try to eat crackers constantly, and small amounts of (healthy) food throughout the day. I always try to reward myself..."In 5 days, when I'm done with these crappy pills, I'm going to see that new movie", or, "I'm getting that new mystery out of the library by my favorite author"....Give yourself something to look forward to.

    For mental fitness-and yes, I have memory loss, and "brain f*rts" all the time, and I'm only 45, keep reading, do Sudoku, crossword puzzles, jigsaw puzzles, anything! Try to keep your mind off the illness and working all the time. It is very easy to give in to the depressive aspect of what has been lost, try to think positive.

    We have our own small farm. I'm lucky that I am still mobile enough to try and ride. I do have pretty moderate arthritis affecting my hands, elbows, and knees, but I do a lot of flexing all the time-especially s-l-o-w warmups in the morning. I walk the dog 4-6 times a day around the property (1/4 mile each walk), and still feed and muck the 4 horses here. I refuse to give up on that, but feel my next fall will be the end of my riding as well. I guess I just keep trying to plug along!!

    I'm so sorry about the job loss-hope you weren't let go because of the illness? Staying active is so important! Also, if you cannot physically ride, and do keep your horses, are any able to be trained to drive? What about groundwork, or showmanship? Just for fun, at least? That way, you won't lose the very important connection-the happiness and love, that I'm sure your horses give to you....

    My thoughts are with you. It is a dreadful disease, and I wish there was a magic cure!! Hopefully, one will come for our children.....


    • #3
      I am so so sorry. I am to going thru Chronic Lymes. It was in remission. The IV drugs I was on last spring had me doing great, then after 6 weeks of it the doctor said I was cured. Now I am so sick again that I can not ride, it causes to much pain, I am having internal bleeding, sometimes I can't get out of bed for days, I have problems remembering if I have already talked to people and say the same things over and over again. I now can not train, and that is what I do for a living. I sent my TB that I own with another woman down to KY to a trainer to sell him as he was just sitting and he is a true upper level event prospect. I don't feel bad about my 2yr sitting. I figure maybe I will be healthy when he is riding age.

      My doctor is trying to get the insurance company to let me go back on IV rocephin for at least 6 months. I am praying they let me as I am getting worse. The bad thing is the good days. The days where you almost feel human and then the reality comes crashing down again.

      My email is vmattson@mattsontraining.net if you would like to talk with another horse person going thru this. Maybe we can try to keep each other from getting to bummed out


      • #4
        Have either of you seen the documentry Under Our Skin? It is all about Lyme Disease. You can order it off of this website : http://www.underourskin.com/
        or I know I checked mine out from the library.


        • #5
          Just diagnosed with chronic Lyme (and likely at least 2 co-infections, but haven't been tested for those yet) in December, but best guess is that I was infected at least 6 years ago. It's settled in my heart and is causing a severe arrhythmia, along with the standard joint/muscle pain, neuropathy, etc. The few Lyme-literate doctors in the area aren't taking on more patients, so I'm trying to get in to see a Lyme specialist in NY when SO and I go to Jersey to visit his mom in April. I'm currently seeing a naturopath, who has me on a crapload of supplements that seem to be helping a LOT, especially the vit. D-- I can really tell when I haven't taken it for a few days. My insurance won't cover any treatment beyond a month of Doxy, so I'm getting really concerned about the cost of treatment.


          • #6
            My father is recovering from lyme (hopefully!). We thought he was going to die before they finally figured it out. he was in the hospital and then rehab for months.

            The one thing that we think has assisted the most with his recovery was a Tibetan healer. I happen to live next door to a Tibetan healer. People come out of her house looking so happy that I thought, what the heck? I made an appointment and my mom practically carried him over there. He could barely walk with a walker and wasn't eating (no appetite). Within 24 hours of taking her supplements he was eating again and he's doing a lot better. His energy is up. He still walks with a cane, but doesn't use it around the house.

            He still has some serious nerve damage but the feeling is coming back. His energy levels are up a lot. He's also taking "cat's claw" as well which is a common lyme treatment in Europe. I think it's a natural antimicrobial. I think some of the stuff my neighbor is giving him help boost his immune system in general.

            If you're in the Northeast, PM me and I'll give you the healer's info if your interested. She's in Boston. But they're not uncommon in the US. Best of luck to you. It's a terrible disease.
            Last edited by Chaila; Feb. 19, 2010, 09:32 PM. Reason: needed details....
            Somehow my inner ten year old seems to have stolen my chequebook!



            • #7
              I can not stress enough that anyone with lymes or knows someone with lymes needs to watch this dvd http://www.underourskin.com/ I have shown it to people that have watched me be ill, then not, then ill again, and it shows them what we go thru, what we are battling insurance wise, and emotionally.


              • Original Poster

                thank you for all of your responses! I thought I was on my own here even though that my LLMD mentioned that 25% of his patients are horse people.

                Unfortunately, the job loss was enhanced by my health issues. Had I held on until my FLMA had run out, I would have been fired. The economy forced cutbacks in the company so I had to take it.

                My lyme has settled in my back, my SI joint specifically. The nerve pain is horrific...no amount of pain killers touch it. I am currently seeking treatment with a LLMD who has just relocated to Washington DC but between the travel and the stress, it will take me over a week the physically recover. I am trying to seek out alternative options that do not include a multitude of medications (currently on 25 different prescriptions plus 12 supplements).

                I now know why horses founder when they are treated for Lyme. The pain and what the 'cure' puts your body through is beyond horrible. I have the classic brain fog, pain in my hands and feet (as well as by legs and back). I have no energy and strength and the antibiotics have trashed my stomach. Has anyone done the IV and still worked around their horses? Is it possible?

                I have ordered the DVD and cannot wait for it to arrive!

                Thanks again for the responses! It makes me feel better that I am not alone on this. But for those that are on the other side of this, are you back to riding again? Is that even a possibility or should I let go of that dream>
                Keep in mind...normal is just a dryer setting.~anonymous


                • #9
                  I did the IV in Jan of 09. My doctor wanted to do it for 6 months. The insurance company only let me do it for 6 weeks. The first 3 weeks were hell. Between the pain of the port and all the meds going in it and the drugs killing the lymes I didn't get off the couch except to use the bathroom, and some days with help. After that I actually started going out to the stable with my port in. Lunged a few horses, gave some lessons. I only rode the little lesson pony who I kknew would never put a foot wrong. You can't really ride with a port in your chest, to much of a chance if you fell because it goes into a artery in your heart that it could kill you.

                  My doctor is trying to get me back on the IV for the 6months I need.

                  I actually had a good day yesterday. Had pretty good energy and the pain level was not as bad (only a 7 out of 10!) Today I am paying for my good day. It hurts to even type. It feels like I have been run over with a truck. My joints hurt, the worse is my spine, pelvis,knees, and neck. And pain killers don't work for it either, that or else I have the highest vicodin tollerance there ever was!

                  I know how you feel. Everything hurts. Some days I can't even remember doing certain things, I will have the same conversation with a person 3 or 4 times before they gently ask if I don't remember talking to them about that. My chest pain/ heart palpitations have started again, not good. Last time that happend I would black out at odd times and had to stop driving my car : (

                  I am lucky to have a LLMD just 1hr away. He has cured tons of people. He keeps telling me 1 step forward 2 steps back for almost the first few years of treatment and then getting the insurance company to let you on the drugs that will cure you. I keep on being told there is light at the end of the tunnel, but somedays it feels like someone is switching it on and off just for the fun of it.


                  • #10
                    The movie "Under Our Skin" was advertised in our local paper, it's playing for a few weeks at a small, indie theater...yesterday there was the first showing, and there were a few speakers there, with Lyme info....The place was mobbed, couldn't get near the place. I'm going to see the film today or tomorrow. Looks like it's worth seeing.

                    OP, only you can decide if you can ride. Myself, I take the winter off, and start the horses up very slowly in the spring, in my unfenced outdoor. I start by walking only 15 minutes, building slowly up to trotting, and then finally I hit my trails. It takes way longer now to feel fit. The aches in the hands and knees are pretty bad, but I just want to keep trying. I guess I will give in when the pain is unbearable, or I am injured in a fall...Both my horses are very safe, and well broke, and I am careful about what I do-no more long gallops, jumping, etc., just more sedate riding, with light canters. It is what it is!!! I feel if I give it up, it's all over...horses help keep me sane.

                    Best of luck to you, and all those who are suffering....


                    • #11
                      Has anyone ever tried overheating themselves while on antiobiotics? I had this mentioned to me when I was fighting chronic lyme and until I devoted myself to the hottub at 105 when I was on meds I could not get rid of it.
                      "Kindness is free" ~ Eurofoal
                      The CoTH CYA - please consult w/your veterinarian under any and all circumstances.


                      • #12
                        Just got back from the seeing the movie "Under Our Skin", it's really worth seeing!! It's pretty scary though, watching how bad it can really get...My future does not look bright. I have to go for a checkup at my GP, and I'm going to have him run the tests to see if I'm positive again. I'm feeling pretty debilitated, and I usually feel pretty good going into spring.

                        Eqtrainer...Please elaborate? I don't know what you're asking...Do you mean you felt better after "steaming" yourself? I don't have a hot tub or sauna, but would try cooking myself/heating up under a few electric blankets (with supervision), if you think it would help....Please comment further


                        • #13
                          I was told - and I don't remember by who but it surely was one of my doctors - that since I had a hot tub I should heat it up as hot as it would go (105 in my case) and while I was on meds get in it every single day for 20 minutes. I think it helped immensely as I had not been able to eradicate it before then.
                          "Kindness is free" ~ Eurofoal
                          The CoTH CYA - please consult w/your veterinarian under any and all circumstances.


                          • #14
                            I"ve tried the sauna method. Broke out in full body rash and within min had problems breathing. I can't even take really hot showers without starting to feel ill.

                            SPURGIRL- Glad you went to see the movie. Personally I believe the CDC people need to be strapped down, infected with lymes, and then after it gets to the point we all seem to be at on here, and the way the people in the movie are be asked if they think it is a real disease. Just remember thought that the regular lymes test at your GP that they give you has a false negative rate of 50% Do you have a LLMD near you? If I wouldnt' have found mine I would have been dead by now, and I am not kidding. I am just hoping they can get me back on the IV rocephin as I am now starting to have heart problems again : (


                            • #15
                              I was diagnosed with Lyme Disease, Babesiosis and Bartonella eight years ago, as was my daughter.

                              Current doctor believes that I may have had at least the lyme for 30 years. Daughter for at least 20.

                              My daughter was the really sick one. From the time she was 12 until she was diagnosed at 22. She was always sick. Kidney infections, upper respiratory infections, pneumonia, you name it. Doctors finally wrote her off as a psych case. Then she developed heart problems. Thank god for her internist. He just didn't give up. Her knee finally swelled and bingo, tested positive for lyme on the Western Blot (never did test positive on the totally usless ELISA test). We and the insurance company spent over $800,000 to get to that diagnosis. Ridiculous. It was suspected at least 5 times, but, because of the poor testing, was never confirmed.

                              I finally tested positive by PCR.

                              We went through several doctors before we found a really wonderful one in Maryland. The first doctor, although very competent, had a protocol that he stuck to no matter what. When it got to the point where my daughter and I were unable to function, work, go to school, because of reactions to the meds, we found another doctor.

                              He immediately put my daughter on IM bicillin. The change was miraculous. She became a functioning human once again.

                              In my case, I was able to stay on oral medication, but he actually listened to how I was feeling and tweaked the meds to allow me to be able to function.

                              I'm about 90% right now and have some arthritis which may never resolve (but I am a whole lot older too). Daughter waivers between 80 and 90% but that is mostly because of other health problems due to a perforated colon (and that's another long sad story).
                              Last edited by LauraKY; Feb. 23, 2010, 12:26 PM.


                              • #16
                                Make sure you check out the LymeNet Forum: http://www.lymenet.com/

                                Lots of good info. Some nut cases (but isn't that the case with all forums?)


                                • #17
                                  Friesiancross I am so sorry to hear how bad you are feeling....it just breaks my heart. I cannot imagine being THAT sick all the time. I was really ill at one time and had my husband not taken over for four months I would not have cared what happened to my animals , that was how bad i felt. You cant give up though...keep HOPING and exploring options and know that so many people are thinking about you and, sadly, many share your pain. Please PM me if there is anything I can send you!
                                  Little Star Chihuahua Rescue
                                  The Barkalicious Bakery
                                  On Facebook!!!


                                  • #18
                                    Hi Everyone- I am going to see my doctor next Wed, they are hoping to get me on my IV meds ASAP as I have gotten worse. Let's just say having your husband have to help you off the ground if you sit down, and gasping in pain walking down stairs, and having your heart murrmur (which is really bad) come back isn't a good sign : (

                                    Cross your fingers they give me my dang meds!

                                    LauraK- I am asking my doctor about the IM bicillin when I see him
                                    Last edited by Couture TB; Feb. 26, 2010, 09:34 PM. Reason: adding


                                    • #19
                                      I am so, so sorry that you have to fight so much with your insurance to get the meds you need. That just is not right.
                                      a 501(c)3 organization helping 501(c)3 equine rescues


                                      • #20
                                        Don't give up!

                                        Originally posted by Friesiancross View Post
                                        My lyme has settled in my back, my SI joint specifically. The nerve pain is horrific...no amount of pain killers touch it. ... But for those that are on the other side of this, are you back to riding again? Is that even a possibility or should I let go of that dream
                                        Bi-lateral inflammation of the SI joints is the hallmark indicator for Ankylosing Spondylitis - which is what I have. It can be, and is often, triggered by the body's response to infection and/or trauma. I urge you to get Xrays of your SI joints, and if they show inflammation, then get to a Rheumatologist who is familiar with AS - most are not. You can find a Rheumy in your area, and details about Ankylosing Spondylitis here - http://www.spondylitis.org/ It wasn't until I went to a Rheumy who specializes in AS ( who I found thru that website ) that I got my diagnosis, AND meds to help. And, unfortunately, AS can affect all of your joints, intestines, and even heart.

                                        I was on antibiotics for months - which literally saved my life, and then sought out my Rheumatologist since no doctor I saw had a clue. No one ever tested me for Lyme, so I can't offer any insight regarding that. And no doc could ever pin point the source or cause of any infection, but I was near septic before I got antibiotics. We went from doctor to doctor, and various hospitals for about a year and were unable to make any headway concerning diagnosis or treatment. One young male doc just looked at my age - 48 then - and said I was probably just beginning to go thru The Change! At least 10 docs failed me - even a run-of-the-mill Rheumy who dismissed my symptoms. My AS Rheumy, who finally made the diagnosis with Xrays of the SI joints, said I was one of his sickest patients. And commented that the average AS patient suffers for 8-10 years before getting accurately diagnosed!

                                        Now I'm on Humira, loads of pain meds, and Celebrex when my gut can tolerate it, and I just bought my new horse after 20 years absence from riding, and started riding again for therapy - mental and physical. My riding is coming along slowly, and thanks to my "therapy horse" who takes good care of me, we're having a great time. I whine that I can't do what I used to do, and I still have various degrees of constant pain - but I'm a long way improved from barely being able to get out to bed to get to the bathroom, in just a few months! So yes, there IS hope!

                                        Best wishes to Get Better Soon!
                                        “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