1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Antibiotics

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Daffodil, Nov 3, 2013.

  1. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,015
    UK
    @Daffodil
    you've had xifaxan before haven't you, its just a gut antibiotic. but works very well. Wonder what giving you the diarrhea ? have you had another stool test?
     
  2. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    hi maryb. the antibiotics were causing the diarrhea. probiotics just made it worse.

    I am hoping that things will return to normal down there in time...maybe my gut is still recovering from 1 year of antibiotic use.

    I have tried xifaxan before (good memory!). it was a generic brand from india I think...this time, I can get the name brand.

    when I tried it before at a lower dose (cannot remember exact dose), nothing happened until 10 days after I stopped the drug. then, I had a week of near-recovery! when I tried it later at a higher dose, I just got really sick.

    when I told this to KDM, he smiled and said that dosing was important.
     
    merylg and heapsreal like this.
  3. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,015
    UK
    @Daffodil
    You tried ARVs and AVs as well before going to see KdM didn't you. Did you have more testing with him? Have you been diagnosed with Lyme? I'm interested as for the past few years I thought my symptoms were viral related, which many were (high CMV and EBV titres) but now it seems that a bacterial infection, possibly Lyme may have been driving these.
     
    merylg likes this.
  4. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    lol dang your memory is like mine used to be ages ago

    I did indeed try all that stuff and yes I had more testing with KDM...and yes, he did diagnose me with borrelia and probable bartonella.

    I just don't know what came first....lyme or immune problems...but it appears that bacteria somewhere is doing something...

    and let me tell you, my entre 20 yrs of illness, I never would have guessed that bacteria could have something to do with it. I would have probably yelled and sworn at anyone who suggested such a thing lol
     
    merylg likes this.
  5. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    hi all. just wanted to say that after stopping antibiotics, my night sweats are incredible. they actually stopped during the antibiotics. now its every night..waking up soaked.

    my doctor said this is leaky gut related, but I did a year of antibiotics...shouldn't that have given me some permanent improvement at all?

    seems so improbable to me that I will ever get better. nothing seems to work any longer than the time I am on it.
     
    merylg and Valentijn like this.
  6. Aileen

    Aileen Senior Member

    Messages:
    608
    Likes:
    493
    Canada
    I'm so sorry Daffodil! :hug::hug: I wish I had something to suggest. It sure seems like your body is trying to incinerate something. I suppose you've probably tried all the immune modulating things.

    Just a thought. I know you said probiotics made things worse so you don't want any of those right now. But, what about taking a prebiotic? Some people are reporting what seems like immune modulating results with Larch Arabinogalactan. Have you tried that one?
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,672
    australia (brisbane)
    i think for many of us treatment is going to be ongoing or cyclic. we just dont have an immune system to keep many of these infections down, unfortunately??
     
    merylg likes this.
  8. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    thanks guys. just so depressed right now. I met 2 rappers on the bus home from buffalo. they were going to perform at the north by northeast musical festival here. it all just came back...the feeling that I lost my entire life. I don't know why. just happy people living their lives, doing what they enjoyed. they had toured in japan and had taken pics and made movies and videos. I just felt so....I cannot even describe it. so deeply sad. and seeing no end. they invited me to watch them perform but I know I will be too sick. I feel like I am in a small cage and screaming but no one can hear me
     
  9. knackers323

    knackers323 Senior Member

    Messages:
    837
    Likes:
    166
    I
    I know just how you feel. Have felt this way for 18+ years
     
    Jon_Tradicionali and justy like this.
  10. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    67
    Clindamyacin worked the best for me when I was first diagnosed with lyme...years later it stopped working and so did I, low fat diets seem to help my side effects when taking drugs. Clariothryomyacin gave me crying fits, and I would NEVER take septra or levaquin again for any amount of money, sulfa antibiotics and quinolones can damage you for life and even over very few doses.

    I have said this too much already but, maybe most people's mitochondria dysfunction is a deficiency of molybdenum, and molybdenum can detox the immune suppressing yeast chemicals...I am starting to feel a bit like my old self since I started taking 5-6 pills of Molybdenum, 600mg selenium on empty stomach, and 20,000 vitamin D ius, today. Went to the mall today without any vague feelings of fear and my voice is getting deeper for some reason...

    I was trying to remember what roundup is called in the drinking water, and remembered its called glyphosate...I was happy that I remembered it so quickly, word recall can be a big problem for me usually.

    my plan is to get my body in the best shape as possible, and hope I can get vancomyacin from Dr Jemsek and knock the lyme/bartonella/mycoplasma out completely.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,672
    australia (brisbane)
    What issues did u have with septra? it is the same as bactrim??
     
  12. knackers323

    knackers323 Senior Member

    Messages:
    837
    Likes:
    166
    Hi @Charles555nc why are you taking the selenium? Thanks
     
  13. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    67
    Seems like 1000 different viruses/retroviruses that could cause problems. Seems a safe bet that theres a virus I have that selenium will help against.
     
  14. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    67
    sulfa drugs like bactrim and septra, ruin lives. I had an autoimmune/cns reaction, to septra, that damaged me permanently.
     
  15. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    67
    I totally forgot the most important drug besides clindamyacin, tindamax is something Im still on (for years) and keeps me away from the "life is miserable" level of symptoms, 3 pills two days out of the week to blow up lyme cysts, and I believe its also anti parasitic.
     
    merylg likes this.
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,638
    Likes:
    1,993
    Midwest, USA
    It was a Sulfa drug that got me past an antibiotic rebound infection. It had take two 10-day courses of the antibiotic to get me over the respiratory infection. The doctor did not want to do more antibiotics and neither did I, since the same thing might happen.

    When I got to work the next morning and said I was on a Sulfa and had already taken the first dose, the office manager had a fit. She said I should have waited until I got to work to take the first dose because of the reactions that Sulfas can cause. I was a little pissed the doctor had not told me that. Fortunately I did not have any problem (other than developing an intractable candida infection).
     
  17. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    hi charles. thanks for the info. i googled tindamax and it looks like a lot of people are scared of taking it....carcinogenic affects? or something... anyway i will read about it some more. at the moment, i am limited to what my doctor tells me to take in the abx department...but i am glad you have found things to help. I have ordered a large tub of L-glutamine!
    xoxox
     
  18. Charles555nc

    Charles555nc Senior Member

    Messages:
    460
    Likes:
    67
    500mg glutamine every two weeks is what i recemmend- just to prevent deficiency, and thats a tiny dose....and tindamax has no side effects for me, other than some herxing. Ive never heard of a cancer connection, and if there was, it was worth it for me to take it.- it did that much for me.

    I also take methylation supplements and selenium etc etc which have strong cancer protective effects.
     
  19. Daffodil

    Daffodil Senior Member

    Messages:
    2,887
    Likes:
    864
    wow it helped that much eh. interesting.

    i heard glutamine should be taken 5 - 8 grams for leaky gut?
     
  20. Butydoc

    Butydoc President

    Messages:
    96
    Likes:
    303
    Hi Charles555nc,

    What was your autoimmune reaction to septra? I have use bactrim and Septra as a first line drug for treatment of mrsa with few negative reactions. All drug I have used have side effects. The trick is to choose the most effective drug with the least side effects for the specific problem that your treating.

    Best,
    Gary
     

See more popular forum discussions.

Share This Page