How long till you start feeling better

Discussion in 'Lyme Disease Archives' started by Poppy2, Mar 4, 2008.

  1. Poppy2

    Poppy2 New Member

    Just wondering, Iv'e had lyme for 7 or 8 years been on antibiotics for about six weeks, how long untill I may start feeling a bit better? Any ideas? Thanks Poppy
  2. wld285

    wld285 New Member

    Can't answer you're ? but I'd like the answer also.

    I was on doxy for 6 wks, then stopped and he had me re-tested. Started on another 6 wks last Fri.

    Hope you feel better soon, I'm not counting on it for awhile.

    Linda
    [This Message was Edited on 03/04/2008]
  3. victoria

    victoria New Member

    Everybody's different of course. My son was dx'd almost 3 years ago at age 17, and from symptoms probably had it at least 4 years prior... he is still taking oral abx but yes he's better than he was.

    Most of his pain stays away most of the time at least, most of the time he has no neuropathies, his pulse and BP are now normal (were abnormally low before), and he has been able to gain much needed weight, but it seems the neuro stuff has been the hardest to get rid of.

    When did he first feel better? That's the real question I suspect... his doctor had him pulse meds, 3 5-day weeks of abx for lyme + flagyl to break up cysts, then a one week 'holiday' to let his immune system rest.

    I would say after the second month's pulse on his week 'off' is when he really felt a lift.

    Unfortunately it usually takes a long time to be able to go for very long without symptoms returning, but that is how you tell how you're doing. Right now it seems like maybe he can go 2-3 weeks off all meds before he gets them back. Still touch and go, still not able to work/go to school tho.

    all the best,
    Victoria

  4. munch1958

    munch1958 Member

    Someone from the MDLA (Michigan) stated that it took about 2 years of Abx treatment to really start to feel good again. She talks to hundreds of Lymies whereas I just started talking to Lymies.

    From my experience, it took about 18 months. But that doesn't mean there are not relapses.

    I have a muscle in my hip area about 3" left of my spine that's in constant spasm. To the point where I can't even roll over in bed. Can't get up off the couch. Go potty. It's the up and down motion that's a killer. This is horrid!!!

    This started 10 days ago so I have not been online much. Sitting is awful. I think I did nothing more than reach for an empty water bottle in my car when driving. I was afraid it would lodge under the brake so I reached down to get it.

    Boing - Went the muscle.

    I'm using my Miracle Balls to stretch it out. I lay on the floor with the balls under my hip. It's helped but then it spasmed again. I couldn't get up off the floor. Talk about feeling O-L-D and useless.

    My point is that I've been sick for YEARS. Long term Abx is just that....long term. No quick fixes as much as we want them. It will be up and down type of thing. Getting coinfections tested is critical as is hormones.





  5. mollystwin

    mollystwin New Member

    That sounds horrid!! I hope you feel better soon!

    Poppy, I replied to this question on the FM board. I hope you find some relief soon!!

    dar
  6. cherylsue

    cherylsue Member

    Yuck! You had been doing so well. Do you think it is this awful weather? Your hot tub sounds good right now. Feel better soon!

    I had a phone consult with Dr. C yesterday. He thinks I have a genetic enzyme deficiency. He wants me to detox and urged me to try Alli again. He said it has helped his patients. He also encouraged hot tubs and massages. Your brother gave me a name of his massage therapist in Joliet.
    A bit far though. Maybe in another month or two.

    Best wishes,
    CherylSue
  7. ritarhoads

    ritarhoads New Member

    I tell my patients that it took a long time for them to get as sick as they are and so it will take a long time to get mostly well. Some symptoms may linger due to permanent damage, but many sypmtoms can go away. Natural supplements are an excellent way to heal from symptoms as the antibiotics only kill the organism. When going on antibiotics you will get sick about a week later. This is not a reaction to the med(unless you have hives), but rather a reaction called the herxheimer reaction. As the lyme bug is killed it realizes toxins and causes an inflammatory reaction. You may get a low grade fever, tingly skin, sore throat and an increase in joint and muscle aches. This may last from 1-7 days. It often recurs once a month until enough lyme are killed. I am one of the believers in long term treatment. Lyme has a very slow reproductive cycle and kills occur during the division phase. My son felt better initially after 3 months on high dose antioxidants. Then he went on antibiotics and got very very ill from the herx. Now 2 years later he is still on antibtiotcs but immensely better than when he started. Dont know how much longer the doc plans treatment.
  8. zena01

    zena01 New Member

    I got a pos IGenex test in December, and saw my Lyme doctor for the first time 2/8/08 and they said that they feel I was infected at age 12 so I've had it for 35 years -- just been fighting it off with symptoms popping up here and there all my life (35 years of colitis, chostochondritis, feet pain, and weird other things) all that time until it "triggered" fibromyalgia which I was diagnosed with in 2004.

    I'm now treating the co-infection Babesia for 4 to 6 months, then he said we'd start on the Lyme -- and that it would possibly be 18 months before I start noticing I feel better after we start that. The thought of being this sick for 24 months scares the crap out of me, but at least I'm fighting something now.

    I just finished my first 5 day on/5 off treatment with Artemesiae which kills Babesia a couple days ago and boy was I sick, fevers, hurting everywhere, headache, totally weak, I mean i've had some days almost that bad, and an hour or half day here and there but it was every day all day, and all night. It didn't matter if i was sitting, walking, laying or what unless i was asleep i was totally miserable. I don't know if that was "Herxing" or what -- I certainly hope it was as I don't want to be that much worse that's for sure. I'm not much better today, but anything better after feeling that bad is a relief.

    I had to start with tummy supplements and tummy fungus antibiotics due to stomach problems, ulcers in stomach/esophagus, inability to tolorate antibiotics, pretty much anything making me sick to my stomach ect. But I'm glad to start killing something. I start Zithromax I think next week -- if it makes me feel as bad as the artemesia did I'm kind of scared I can do this.

    But I can, because I have to. Thinking of some spirochete thing burrowing around in my brain making me stupid???? Makes me want to Kill, Kill, Kill. (Lyme of course, LOL)

    Take care and hang in there, it's all we can do.
    Zena

  9. victoria

    victoria New Member

    I agree, it's not a steady upwards 'getting better', for many if not all at least.

    When my son started (oral) abx, within 24 hours he was herxing in a major way ... and did for the entire 3 5-day week pulse. The way his LLMD pulses meds is one week off per month to let the immune system rest plus the weekends during the prior 3 weeks... he definitely felt better during that first week for the first time in a long time.

    Of course, he restarted herxing immediately after taking the 1st does of abx the 2nd month... and so forth in general.

  10. ritarhoads

    ritarhoads New Member

    Herx's vary between people and treatments. I tell ppl to expect a lowgrade fever, sore throat, crawly or tingly skin, muscle and joint pain and weakness. You may have all or some. It occurs about once a month. You may not have one until you are able to tolerate a higher dose or change meds.
  11. Daisys

    Daisys Member

    Poppy, I've had lyme for over 30 years, and have been treated for a little over 6 months now, and have been herxing the entire time.

    My LLMD told me I would feel substantially better in a year, and the treatment would take 2 years. So, I would think you'll feel better sooner than I will. I'm getting older too, which works against me.

    Of course, we're all different, so it's hard to predict anyone's progress.

    BTY, most of my symptoms involve pain, and once that was managed, I do feel substantially better already. But, I look forward to the "real" progress to show up.
  12. Chootik

    Chootik New Member

    I've been on Zithromax for a year and Malrone for about 6 months. Still not all that better. It def. has helped but not totally better.

    I did have a question for the folks that have been taking the ABX, have any of you developed Liver Spots on your hands and body?

    My Doc seems to think this could be due to the toxic effects of the ABX. I've been trying to figure out why I'm gettting them, went to a Dermatologist, he was a total idiot, basically told me he doesn't know and it's not anything to worry about!!

    So I'm curious to find out if any of you guys have experienced any side effects from taking the ABX for a long time?

    Thanks Guys.
    Chootik
  13. EricaCFIDS

    EricaCFIDS New Member

    I worry that with the killing of the infections with ABX, large amounts of toxins are being released into our bloodstream and causing a lot of strain on our livers and kidneys. I plan to ask my LLMD about this, but wondered what each of you do for that? I was taking Ursodiol (Urso Forte) a year ago, but stopped. It's a prescription for that, but I'm also interested in something natural. I really want to aid my body in the filtering out of all of the toxins released. I imagine that would help tremendously with the herxing.

    All the best,
    Erica
  14. Chootik

    Chootik New Member

    Thanks for the reply.

    I just saw this. I still have the Liver Spots on hands and more on my body now!

    Question- How are the Adrenals related to the Liver Spots??

    I will have to do some research on that. I'm going to see the LLMD in May and will have to talk to him about that.

    I am doing a Detox called "Pekana" for the Liver, Lymph, Spleen, and Kidney and it seems that has helped a bit with the Spots but not much! I'm also starting to take Grape Seed Extract (Powerfull Anti-oxident) which someone said helped with their Liver Spots.

    Honestly I'm not sure why they are appearing and how to get rid of them..

    I guess it's just shooting in the dark with this stuff...

    Take care.
    Maryam
  15. connieaag

    connieaag New Member

    that most of his patients have a low body temperature. He also indicated the white splotches on my daughter could be from Lyme because it like to live in the skin. So maybe what appear to be liver spots are from the LD???

    Connie
  16. wld285

    wld285 New Member


    Funny to read this tonight. I have them on my hands also. Recently I noticed I have them on one side of my stomach, the same side all my other ailments are on. I just always thought it was a sign of aging!!!

    Hope everyone is doing okay.

    Linda
  17. highcotton

    highcotton New Member

    I feel for you Daisys -- been ill for 16 years, so symptoms are well-entrenched. I've been treated for ten weeks and have herxed all but 3-4 days.

    I'm on low dose abx but my herx has at times been huge -- i truly thought i would die for a few days last week. rita, i WISH my herxes were as mild as the ones you warn your patients of.

    overall, I've had no real improvement in symptoms yet.

  18. foggyfroggy

    foggyfroggy Guest

    We are all so different. I just felt really limp, like I couldn't hold my head up, skin burning, and after about 2 weeks I blew up like a toad and had to go off for a week. I think my liver and kidneys were unhappy!
    This is my second round of Doxy and I think I'll take a day off here and there to see if I can make it through this round without that happening.
    No fever, no aching, no joint pain. I did have headache and neck pain.
    BUT, the great thing is that after a couple of days of being off the Doxy I felt better than I have for years. Makes me wonder if Lyme is my main problem.

    Gretchen
  19. munch1958

    munch1958 Member

    I think they are from poor adrenal function.

    I have tons of them too from sun damage but they really popped out when my adrenals took a dive.

    When tested, I was not making any DHEA or cortisol. This is a sign of Addison's disease.

    My thyroid function is poor too. I'm on two kinds of thyroid supplementation.

    I'm growth hormone deficient too. Failed a stim test.



    Lyme messes up your hormones. So does having CFS and FM. Isn't that a funny coincidence? Not really -- just another clue that 8 out of 10 with CFS and FM have Lyme.