Anyone recover from Lyme?

Discussion in 'Fibromyalgia Main Forum' started by kellyann, Feb 8, 2006.

  1. kellyann

    kellyann New Member

    And if so how long does it take? I have been on antibiotics for about 3 months so far and I HURT all over really bad. I can barely stand it. How long does one hurt like this before feeling better? My doctor says that the added pain is from die off. I have pain medicine but it hurts even while taking it. I don't know how long I can stand this.
    Take Care!
    Kellyann
  2. Juloo

    Juloo Member

    I'm going to bump this. I don't know the answer, but I'm interested to see if anyone else does.
  3. kellyann

    kellyann New Member

    I was on doxycycline but it made me too sick to my stomach. Now I am on Amoxicillin 875mg - 2 tablets twice daily and ciprofloxin 750mg- one tablet twice daily. And a ton of supplements and pain medicine. I have been on effexor for about 3 years now 150mg twice a day for depression. Dr wanted me to start taking famvir, but I haven't gotten it worked out with my insurance yet. I have a very good doctor now. I will be so glad to feel better. Thanks for the info, I really appreciate it. Sometimes it does feel so hopeless.
    Thanks again,
    Kellyann
  4. pumpkinpatch

    pumpkinpatch New Member

    I hear ya about the hurting part. Since starting abx my pain has totally magnified. Really stiff sore neck and upper shoulders.

    I am off the doxy and biaxin now and just started amoxicillan and next week tinidazole. This is going to be a long process.
    I think yeast is also a big factor.

    I took dyflucan for 3 months and never noticed a difference. Last week I started BIO K probiotic and seems to really help. My stomach was so sore and I'm sure from the doxy.

    I take xanax and helps with my frazzled nerves. I have pain meds here but don't really help.

    I think through time we'll notice a difference. Just know that you're not alone.

    Cindy


  5. ldbgcoleman

    ldbgcoleman New Member

    I have met several people who are much better just hanging out at the FFC doing Ivs and getting check ups. I feel very fortunate not to have Lymes!

    There is a young man where I go that had Lymes since he was 11. I kept running into him and each time I saw him he was better. He went from not attending school at all to playing football this fall. He is driving and hoping to go to the Navel academy. It took him a good year and a half to get to where he is. His parents are phenominal.

    I also saw a lady last month who I had met about 6 months ago. She was a totally different person. When I first met her she was not feeling any better at all and she had been going for 6 months. Now she is much better but it took over a year of treatment.

    I hope this gives you some hope it is a long hard road but not impossible.

    I have mycoplasma and EBV. The mycoplasma we can eradicate but the EBV will only go inactive and I could relapse. I am planning on doing everyhting I can to prevent that from happening!

    Kudos to you for finding a good Dr and sticking with treatment. You can win this battle. Lynn
  6. kellyann

    kellyann New Member

    Thanks for the words of encouragement as sometimes I feel like I will never get better. Yes, I have several viruses, I have them listed under my profile. I do have a bad problem with yeast also, thrush makes my mouth so sore. I take nystatin for that. I don't think I could function at all without pain medicine as the pain is horendous and all over my body. All of my joints hurt and burn. And now all my muscles ache also. I suppose that is because I have had the lyme for so long before I started treatment. I can't wait to feel human again! There is just too much I want to do yet in this world. My husband and I have adopted a special needs child, she is two years old and the light of my life. I do so want to adopt another special needs child or two. And I want to go to nursing school. It has always been a big dream of mine. Shoot, I want to go ride my horses so bad I can taste it, haha! I love to sew when I feel good enough, I have so many quilts planned but they have been put on hold. I am trying to just chill out and heal. You guys are great and have made me feel so much better and given me hope again! I have checked out the lyme net site, it is pretty good. Thanks for being there!
    Kelly
  7. kellyann

    kellyann New Member

    Do you go to the FFC in Marietta? I do, I see DR. Bullington. I think she is great!
    Kelly
  8. karatelady52

    karatelady52 New Member

    I got so bad on the abx I asked Dr. Bullington if I could pulse the meds and she said that was fine. I took them for about 10 days and then took 4 or 5 days off. It helped a lot with my sanity.

    Don't forget to detox as many ways as you can. Detox foot pads from HealthMarvels.net are great. They help me with morning headaches. If I skip a night, I have the headache so I know the detox pads work.

    Also, Epsom Salt and peroxide bathes help me a lot. I soak for as long as I can --- which isn't very long -- about 15 minutes in fairly hot water.

    Dry brushing before getting in the shower is good. It helps open up the pores and gets the toxins out.

    Don't forget your Burbur for herxing.

    Naps helped me with the pain. I would wake up rested with a little less pain for awhile.

    Someone mentioned Lymenet. You can do a search over there and get a lot of suggestions.

    Hang in there ~~~~ Sandy

  9. jarjar

    jarjar New Member

    My Doc says it takes 1 to 4 years to recover so hang in there. My Dr. is also big on prolo therapy for pain. You can do a search about it if you aren't familiar with it. Best of luck to you!
  10. kellyann

    kellyann New Member

    Maybe I should ask the doctor about the ten days on then a few days off. Wow, 1-4 years is a long, long time! But really I guess Lyme is a lot better than no cure ever, which is what I was told with the fibromyalgia. I just knew there was some reason I was getting sicker and sicker.
    Sandy, you have the exact same things I do.
    Take Care!
    Kelly
  11. ldbgcoleman

    ldbgcoleman New Member

    Yep I go to Dr Bullngton. So does Karatelady, Dalphia, Countrymon, and several others!

    What you are feeling is all relative. Yes you can bet better but the whole thing still stinks!

    There are a bunch of horse people on here as well! Search for horse in the title and you will get some hits! I would love to hear about your horses and your little girl. What a special person you must be to give a child a chance and all of that love.

    I'm sorry you are in so much pain but I hope you will hang on! This time last year I never even though I would ride again ever and two weeks before Christmas I bought my new horse and I am doing great. I would never have believed it!

    If you post when your bnext apt is you may run into one of us there. Mine next one is Feb 15 at 9:30

    Take Care! Lynn
  12. karatelady52

    karatelady52 New Member

    I'm the horse groupie --- I love them but don't have one.

    Sandy
  13. redsox10

    redsox10 New Member

    Kellyann,

    I have 2 children with lyme. ages 25 and 17. My 17 year old has been very ill for over 3 years. Diagnosed with CFS. She was diagnosed with Lyme in Oct 04. She is treated by a llmd.

    The first 10 months of being treated for Lyme were awful. She was so much worse. The last 3 months she has had big improvements. She has more energy. She can do more and is starting to enjoy life again. She has a long way to go but is getting there.

    Her LLMD told us in the beginning that recovery will not be quick but she will get better. He said he has treated patients for 3 months to 7 years. He thought my daughter would be in the 3 - 4 year range. He treats until all symptoms are gone for 2 full months.

    My son could not tolerate doxy but can tolerate Doryx. Same thing but some tolerate it better. Are you taking plenty of probiotics. Since switching probiotic brands my daughter tolerates her ABX better. My sons LLMD recommended metagenics ultraflora plus twice a day and theralac in the evening for the probitotics. Make sure you take the probiotics 2 hours after the ABX.

    Have you checked out lymenetdotorg. A wealth of lyme info on that site.

    Hope better days will come soon. Hang in there. Many with Lyme get worse before they get better.
  14. kellyann

    kellyann New Member

    Maybe I will see some of you guys at the FFC! For now I am doing my apointments by telephone because I am too sick to drive in to the office, but maybe when I am a little better I will go to the center. I have 3 mares, one is a black and white paint, the other two are brown. I also have a tiny minature horse for the kids. His name is Biscuit and he is precious, only 8 months old. He is a red and white paint. I feel so very blessed to havebeen able to adopt our youngest daughter. She is gorgeous! She has microcephaly, which means a small head. Her head measures in at 3% of the population. She is tiny. She was placed into foster care soon after birth as her birth parents felt they could not care for her. We have had her almost a year now. The adoption process is so long and drawn out, it is no wonder so many children are waiting for homes. My daughter is doing very well since she was placed with us. She can walk, talk, and feed herself now. It is amazing how much she has improved now that she has a family of her own. I love this child every bit as much as my other kids. She is the light of my life! Wow, sorry to go on and on about my girl, haha!
    Take Care!
    Kellyann
  15. kellyann

    kellyann New Member

    Thank you so much for the words of encouragement, because I sure do need them!
    Bless you!
    Kellyann