Nanie46 & others Question about Herxing

Discussion in 'Lyme Disease Archives' started by Robbie44, May 16, 2009.

  1. Robbie44

    Robbie44 New Member

    Hi Nanie and others,
    I'm fairly new to the Lyme Board as I was usually on the FM site. But I have recently been to an ILAD doctor and she is certain I have Bartonella. She also said she has never seen Bartonella without Lyme. Anyway, as I am waiting for the test results from the Western Blot, I am starting abx to treat the Bart. Going back on old posts I saw that your symptoms are similar to mine with FM. My question is what happened when you herxed? Were you incapacitated? Do you work? Were you still able to work. My LLMD says most people with Lyme can't work--it's just too taxing. I'm not working---just kind of putsing at some self employed work but I don't want to have to give that up too.

    I am very freaked out about this herxing thing---how do people do it? I don't want to feel worse because as you all know we feel bad enough as it is.

    I have been to lymenet.org and gotten some great info, but at times it seems a bit overwhelming so I thought I would ask you here.

    I start with miniciprin (sp?) on Monday. I have already been doing a diet that eliminated dairy, gluten, soy, caffiene, sugar, etc. I never drink pop or alcohol, also supplements, detoxifying stuff like massages and epsom salt baths, etc. for months now. I've lost 20 pounds which I guess is great but what a way to do it. Anyway, I'm thinking since I'm ahead of the game I might not detox as bad. I know there's no way to know but I certainly would like to hear of other people's experience with herxing. Thank you all so much for being here.

    Robbie
  2. Nanie46

    Nanie46 Moderator

    Hi,

    Congratulations on figuring out what is causing your fibromyalgia syndrome!

    You are smart to have gone to an ILADS trained MD.

    Was your western blot done through Igenex?

    Herxing is different for everyone.

    I was also afraid it would be horrible, but for me it wasn't.

    I also have bart. The biggest thing that I noticed was my fatigue increased for several weeks.

    I felt that flu-like fatigue for several weeks and didn't feel like going out of the house like I usually did.

    I also noticed ringing in my ears, and some increased pain (but not dramatic).

    Try not to worry yourself too much over it. Plus remember that herxing is a good sign.

    I do not work, so I am lucky I could lay on the couch if I wanted to.

    I could work if I had to....but my husband works enough for both of us. lol

    You are off to a really great start by eliminating all of those foods.

    Don't expect too much too soon either. From alot of things I have heard and read, expect at least a year to recover...maybe even 2 years.

    So far the only thing I have noticed is I am sleeping better,,,but not perfect.

    Congratulate yourself on finding some answers and starting on the path to recovery...albeit a long road....at least we know what road we should be on now!

    Keep posting!!
  3. Robbie44

    Robbie44 New Member

    Thanks for replying! My doctor sent the test to a lab that she uses in Wisconsin. She completed a clinical rotation in New York City with Dr Bernard Raxlen, MD who specializes in treating Lyme disease and other tick-born infections. That preceptorship was sponsored by (ILADS) so I believe she knows what she's doing. She did send my babsesis test to Igenex.

    Since you have bart, did you have stomach issues as well?
    How long have you been on abx?

    I am currently reading Pamela Weintraub's book "Cure Unkown" and learning so much about the politics of why this disease is such a pandora's box. It's fascinating! So I guess at least I'm reading and comprehending stuff today!

    Start abx on Monday--have had stomach issues all my life and Candida so I'm hoping I can tolerate oral and don't have to go to IV.

    Thank you so much for your reply. Your posts have been very helpful.

    Robbie


  4. Nanie46

    Nanie46 Moderator

    Hi,

    When your Dr gets your western blot results, make sure you get a copy right away.

    Post the results here if you can.

    I believe Igenex is the only lab though that tests for all bands...that's 14 IgG and 14 IgM bands.

    Other labs only test for 10 IgG and 3 IgM bands. They leave out many bands that are specific to lyme, which is inaccurate and incomplete.

    Maybe you will get lucky and have some bands show up.

    I'm sure your Dr knows that Lyme is a clinical diagnosis based on history and symptoms and is never ruled out by just a lab test.

    Over the years due to the undetected chronic infection, I developed food sensitivities to many foods. I avoid gluten, dairy, sugar, etc like you do.

    I have been on antibiotics for 3 1/2 months.

    I haven't read Pam's book yet. I did buythe "Baker's Dozen and the Lunatic Fringe" but I haven't read it yet. It is supposed to be absolutely fantastic and is filled with alot of research.
    It is by PJ Langhoff.

    Regarding stomach issues and antibiotics....the very most important thing is to have high quality refrigerated probiotics. I started with 2 daily and worked up to 4 daily. They are expensive but totally worth it.

    Take them 2-3+ hrs after antibiotics. Also, do not take any supplements with magnesium, calcium, iron,etc in them, close to your antibiotics as those ingredients decrease absorption of your antibiotics.

    I take 2 probiotics 2-3 hrs after my a.m. antibiotics and 2 more 2-3 hrs after my p.m. antibiotics.

    Also,following the diet like you already are is necessary.

    My LLMD said you can take as many probiotics as you need to.

    I take Ultimate Flora that I order through the Vitamin Shoppe. The only thing I don't like is that they don't refrigerate them in the mail.

    My health food store also carries some that are even more $$.

    Good luck when you start your meds on Monday.

    Keep me updated on your progress.

    Take care!
  5. Robbie44

    Robbie44 New Member

    Hmmmm....my doc said this lab did the same bands as Igenex, she just liked it a little better. I guess in the long run, it doesn't really matter, the bartonella is present and I will be treated for Lyme whether the bands show up or not.

    Thanks so much for the advice on probiotics. I'm currently taking nystantin and one 42 billion capsule prescribed by my naturpath. I will increase when I start the antibiotics. I've heard that the best is "Progurt" and I wish I could afford it. It sounds like people really do well on it.

    What a time puzzle this abx, probiotics and supplements will be. I'll figure it out. I may have to start eating lunch. Diet is so limited that I'm kind of tired of everything I eat.

    I have not read the two books you mentioned but will definitely look them up. I finished Unknown Cure last night--it was so fascinating. Thanks for all your help. What state are you in? I'm in Montana.

    Robbie
  6. Nanie46

    Nanie46 Moderator

    I'll be curious to see if that lab really does test for all bands like Igenex. Like you said, you will be treated anyway...plus your Dr can make a diagnosis by your history and symptoms.

    We live in Pennsylvania.

    I'm glad you already have a good probiotic. I think you'll do fine by increasing those when you start your meds.

    I take almost all my supps in the middle of the day so they don't interfere with my antibiotics.

    That book I mentioned is just one book.

    I'm glad you are finding this info helpful.