Does everyone Herx??

Discussion in 'Lyme Disease Archives' started by HppeandMe, Jun 21, 2006.

  1. HppeandMe

    HppeandMe New Member

    Hi Friends-

    I was just wondering if everybody Herx's. I have never herxed after using an antibiotic.

    I heard that some do and some don't. Although it seems to me that everybody here has. So I am confused. What do you think.

    Thanks!
    Hope
  2. morningsonshine

    morningsonshine New Member

    Great name!
    I guess my question would be, are you getting any better from the ABX?? If so, and your not Herxing, i would think great! Your one of the lucky ones.

    But if you haven't herxed and you are not improving i would start to wonder if something else is the problem.

    Also, how long have you been on them?? I didn't feel much different for the first 6 weeks.

    your friend
    misty
  3. HppeandMe

    HppeandMe New Member

    Thanks about the name. I have been on many antibiotics. None on which I herxed on. I have noticed though since I took myself of antibiotics that I feel really awful!!

    I took myself off because I was told that it was taking all of the bad bacteria away from me and that this would make my immune system weak. I was also waiting for a test back to see if I was allergic to penicillan (I had a reaction as a child) so that I could get Biacillan injections. Finally, I wanted to see if I got off my antibiotics if I would get a positive Lyme (that was a stupid reason accd to below).

    I never had a positive Lyme disease test (many through Igenex) but I have had IGG come back positive through
    Igenex for co-infections.

    4 doctors that I have seen have diagnosed me with Lyme disease due to my symptoms. Although, because I have not rec'd a positive I too have thought there was something else wrong with me.

    I have been sick for 2 1/2 years or 3 years in Sept. My docs told me the sicker you are the less of a chance you have to get a positive. The antibodies are no longer there and you need them to get a positive.

    In any case, I have never had a herx and I wonder why.

    I am usuing a new LLMD now who uses a modified version of the Marshall Protocal for Lyme patients. He and his physician assistant are closer to home. He also believes that 95% of people who think they have CFS or Fibromyalgia probably have Lyme disease and perhaps if they had a Lyme test and if it has come back negative than perhaps it is the same type of case as mine.

    I spoke with Igenex about getting a positive and they told me to try the Urine Antigen Test when I was on my . Also, to try the Western Blot again after being on antibiotics for four weeks.

    What did you herx on? How long have you been sick? Did you go through several antibiotics before you found the one that was right for you and made you herx??

    Thanks!
    Hope
  4. minimonkey

    minimonkey New Member

    Hi Hope --

    I've also heard that not everyone herxes -- but it seems most people do. I had an awful herx when I first started abx -- I was on Doxycycline 400/day, and my neuro stuff shot through the roof, as well as my pain. I went off it when I started having mini-seizures.

    I never herxed from bicillin -- just felt better from it. Had another terrible herx from Ketek, but can tolerate it pretty well now (after a 4 day break, then working back up to the full amount of 800/day.)

    I haven't had much of a herx at all from the babs meds, but I know some people do.

    If you feel worse off the antibiotics, that is a pretty good sign you have lyme. You were positive for babs, right? Any other co-infections?

    I tend to agree with your doc that a lot of chronic illnesses are actually lyme that is undiagnosed. If you have co-infections, chances are more than likely you have lyme, too -- not everyone gets a positive test. You may have a strain of it that doesn't match up with the testing antibodies, or just a very low antibody response.

    Be sure to take lots of probiotics to replenish the good bacteria while taking antibiotics, and also ask you llmd about an antifungal if you need it.

  5. victoria

    victoria New Member

    Hope, how are you doing on the modified MP?

    I have been doing okay with the regular version, herxing, but having to redo Phase 1 due to having stopped for too long, altho the herxes are quite minimal - have been mostly brain fog, which isn't quite so obvious as pain or flu symptoms.

    If it's any help, my son had the biggest herx initially the very first month of treatment, but has never herxed quite to that extent again, even tho he has been on the same abx for a while as well as quite a few others.

    The clinic said they have found that treating with abx for Lyme then switching to known or probable co-infections and then switching back to Lyme seems to work well for many.

    While my son was + for Lyme twice, he's never shown + for anything else... didn't herx to Mepron, but now is on Levaquin and herxing cognitively and physically... had to back off the L to only 3X/week to be able to handle it.

    We were talking yesterday about what improvements overall have been made... while he has regained the weight he'd lost and feels a bit stronger, his joints still ache, his hands/arms are still in pain and fall asleep, and cognitively he feels he has actually worsened... very puzzling indeed, hoping that the Levaquin over the next month helps.

    Were you ever tested for Mycoplasma? This too seems to be all too common in our population, and might be worthwhile to look at... altho with the modified MP hopefully it will be taken care of as well.

    and like LLMDs say and minimonkey pointed out again, there are many different strains of Lyme anyway - over 100 in N. America - so it takes some experimentation to get the right ones... and I'm betting that some people could have more than one strain as well.

    all the best,
    Victoria







  6. HppeandMe

    HppeandMe New Member

    You guys are such a blessing to me!! I can't believe all of the symptoms that have returned after getting off the antibiotics.

    I have tested positive for 2 co-infections. Honestly I don't remember the names. I know it wasn't babesia although the doctors say I have every sign for it and that perhaps I should test for it again after being on the meds for a while.

    My new doc is testing me for another strain of Babesia. I didn't know there were different Babesia tests for different regions of the country. He believes I was bitten by a Lone Star or Ixodoes (spelling??) tick. He couldn't believe that no one else tested me for this although my exposure to many ticks came from a dog that I picked up from the airport that came from Texas.

    I feel good knowing that the new doctor is so intelligent.

    Did you guys get a positive when you were off antibiotics??
    I am just wondering if I should wait until I am on antibiotics for a while or wait until my next . comes. Accd to Dr. Harris these are great times to check. What do you think??

    Many Hugs to you both!
    Hope