New/worse symptoms (herx) a good sign ABX is killing lyme????

Discussion in 'Lyme Disease Archives' started by brainfoggy, Jul 29, 2008.

  1. brainfoggy

    brainfoggy New Member

    Hi

    Since going on ABX, now I REALLY know what it feels to have Lyme. I'm having major herx reactions and new symptoms (muscle jerks, spasms, crying excessively...).

    Is this a good sign that the ABX are doing it's job? Anyone else experience new crazy symptoms and believe it's a good sign?

    Thank you
    Mandy

  2. redhummingbird

    redhummingbird New Member

    Hi Mandy-

    It sounds like your having a nice big herx. The symptoms sound consistant with lyme stuff.

    The antibiotics are killing the little spirochetes! Good news!

  3. buttercakes

    buttercakes New Member

    It sounds a lot like me when I was first treating and herxing, its nooooo fun, but unfortunately, all us Lymies have to go through it. With Lyme you feel worse before you get better. When I herx, I get old symptoms as well as new ones. I know its hard but, try to hang in there. When I herx I drink alot of lemon and clean water and take hot epsoms salt baths to detox. Take care, Sandie
  4. brainfoggy

    brainfoggy New Member

    I appreciate your responses. I guess the abx are doing their job just feeling like crap in the process.

    take care
    mandy
  5. redhummingbird

    redhummingbird New Member

    Herxing feels awful. It's a really rough road. There is light at the end of the tunnel.

    Hang in there!
  6. brainfoggy

    brainfoggy New Member

    I just read about your situation with your father and am really sorry. I know you will get SSDI, we're deathly ill so know this will happen... it's just in the meantime things are tough. It must be hard for him too seeing you so sick, my parents are getting old themselves and just want me better.

    The goal is to not live on SSDI forever and one day with good drugs and tlc be able to join the land of the living.

    We will get better, 95% do I was told.



  7. aftermath

    aftermath New Member

    I have experienced what I thought was CFS for the past 15 years.

    I never considered the fact that I had Lyme despite the fact that I spent tons of time in the woods hunting and fishing and my area in suburban NY is known to be a huge Lyme hotspot.

    I never had the tick bite or the rash. Nor did I have any joint pain. Just unrelenting fatigue, cognitive difficulty, and muscle weakness. Most importantly, I was tested for it when I initially got sick (ELISA and WB) and everything was negative.

    Two years ago, my CFS doc ordered a SPECT scan of my brain at Columbia in NYC. It came back positive, with "hypoperfusion in a heterogeneous pattern consistent with Lyme Disease or encephalitis."

    She put me on minocycline and Plaquenil for mycoplasma (she doesn't deal with Lyme but refers out, which she did not do for me).

    This brings me to the reason I am posting on this thread. I developed wicked headaches, muscle jerking, lack of coordination, etc about one month into the abx. I thought it was a side effect of the Plaquenil, so I got off it (I heard a ton of bad stuff about the drug). My doctor was unreachable for maternity leave so I just dropped it.

    This September, I saw a very prominent LLMD (actually a president of the ILADS). Despite a negative WB, he put me on doxy. Again, at about the 3 week period, I got wicked headaches, muscle jerking, etc and pulled off without going back to the Dr.

    I realized last week that I might actually be dealing with Lyme of all things. I went back to the LLMD. I am going to be in it with ABX for the long haul (we will probably do IV).

    I just never considered Lyme due to the lack of any joint pain (despite the fact that my area is so bad that more than half of my friends developed CDC positive Lyme during high school).
  8. Shalome1990

    Shalome1990 New Member

    is different and gets different symptoms.

    From what I understand, if you do a Lyme WB test now, you might test positive sine you have had antiboitics. AND, the testing for Lyme....sucks. Plus, there are co-infections with Lyme and those will cause your symptoms to be a little different than mine.

    I do have joint pain and I know a lot of people who do, but again, the co-infections determine a lot of how your body reacts to the LYme. I have the co-infection of Ehrlichia. I also have the unrelenting fatigue that never ever goes away. I was diagnosed with CFS and FMS for about 20 years now. Just found out about the Lyme two months ago.

    The herx is consistant with Lyme. I got really sick, mine was within days of starting the antiboitic. But, then I understand that the spirochete grows in monthly cycles and you will get worse every 3-4 weeks.
  9. KimDC

    KimDC New Member

    Dear Aftermath,
    We have very similar stories. I've been sick with CFS for 7 years. We vacation every summer in a cabin in the woods in upstate NY (near Woodstock). We do a lot of hiking and fishing. I became sick with a fever, body aches, headaches, stiff neck and extreme fatigue 2 weeks after one of our vacations. I thought immediately of Lyme. But, my test came back negative. My MDs (I was hospitalized) was not aware of the very high false negative rate. That illness subsided after 6 weeks, but the extreme fatigue, headaches, and all-over body aches continued for 6 years. Today, my 2 main symptoms are fatigue and pain (joints and muscle).

    I finally read about Igenex on-line and decided to pay for the basic Lyme panel about 3 weeks ago. I am double positive for band 41 on both IGG and IGM Western Blot. I consider that positive for Lyme. So does my PCP (bless her). I see her on 1/26 and I'm going to ask to do IV Rocephin 2 g per day for 4 weeks. My research on-line has shown that this is the best antibiotic and the best route for late stage Lyme. I expect horrible herxing, but I'll stick it out for 4 weeks because I want to kill this bug. I saw on-line that Rocephin costs $20 per gram, so that's $40 per day. IV supplies will probably run $10 a day. So, that's not too bad. My very good friend owns a medical supply company, so I might be able to get supplies at cost.

    Good luck to you. I just wanted to share my (similar) story and let you know what treatment I'm pursuing. -Kim in Jacksonville, FL
    [This Message was Edited on 01/14/2009]
  10. munch1958

    munch1958 Member

    He thinks herxing is dangerous. At the first sign of a herx, I'm supposed to back off of Abx and restart them when I feel better. So far, this has worked well for me. The spirochete takes 8 months to replicate so you don't lose any ground by skipping meds for a few days. No sense in killing yourself trying to kill the bugs.

  11. Shalome1990

    Shalome1990 New Member

    I have never heard that before!!

    I always thought you were supposed to expect to herx....

    I actually kept taking the medicine because I didn't want the bugs to gain any ground!!