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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Scared to start abx

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by erist, Sep 23, 2012.

  1. erist

    erist

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    So I have been prescribed doxy as a start to lyme treatment (low CD57, western blot positive). Honestly, abx are one thing I /haven't/ tried in a decade+ of struggling with this (and my LLMD, while pretty woowoo and granola in a lot of ways - supports energy healing, does applied kinesiology/muscle testing/etc, is pretty adamant that long term abx are the most effective way to treat chronic Lyme) so you think I would be excited to see if it possibly helps.

    But I think for so long I have assumed "candida" was part of what was causing all my symptoms (which it might be, but I'm not sure I even believe in chronic candida, I'm certainly more inclined to believe in chronic lyme, since I have treated candida a million times, been on sugar free diets for over a year, etc) that I am just blocked and scared to start the abx. Like what if they make things worse and I can't ever recover from them, etc?

    My LLMD actually wanted to start with a PICC lines straight-away and I was like uhhh, no way, oral abx first I think.

    I know that even if lyme isn't the cause of my symptoms, that many people have found abx, doxy especially, helpful for other reasons, maybe other pathogens, maybe it's effects on the immune system, but I've been staring at this bottle for over a week and just can't bring myself to start them!

    Someone have a great antibiotic success story they want to share to kick me off?
     
    merylg likes this.
  2. silicon

    silicon Senior Member

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    since the LLMD is so in favor of kinesiology, etc., has your LLMD used kinesiology, etc. to verify the hypothesis of abx in your case?

    is your fear of starting the abx an "irrational" fear, or does it spring from a deeper source of wisdom inside you?

    while there are success stories of chronic lyme patients being helped by long-term abx, aren't there also stories of people who have damaged themselves following this same treatment? how are the LLMD's able to distinguish (in advance) between these 2 classes of patients?

    I apologize for not giving a success story, as you requested, but I felt compelled to ask these questions...good luck in whatever you do...just keep in mind that these doctors are guessing at what's best, and your own intuition is at least as valid and reliable
     
  3. Jarod

    Jarod Senior Member

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    Everybody's treatment situation is different, and every doctor is different.

    I had some success with doxy with treatment for chlamydia pneumonia. However, some of the stronger ABX were problematic for me.

    I wouldn't touch levaquin with a ten foot pole again.That stuff is nasty, especially for those of us with low glutathione levels.

    Flagyl also caused some temporary nerve pain in the feet, but that went away. It might cause more problems if one takes too much for too long.

    Never tried the PICC lines or other ABX.

    Seemed to me at the time, doxy should be enough to do the trick if taken with the proper mix of supplements.

    I would go slow and not do anything that causes too much discomfort. The idea is to feel better, not worse.

    Might want to ask your doctor about taking probiotics if you are taking ABX.
     
    merylg likes this.
  4. Christopher

    Christopher Senior Member

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    Have you tried any herbal protocols for dealing with lyme and coinfections? Some patients have success going that route.
     
  5. madietodd

    madietodd Senior Member

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    For what it's worth, I started 100mg doxycycline 2ce a day, 2 weeks ago, for lyme. I take a 13 billion probiotic in the middle of the day. Some people on the Lyme boards take double that.
    The doxy is making me pretty sick, but it doesn't feel like candida-sick. More herx-y.

    I just found a LLMD I'm going to see on Thursday, so you're way ahead of me there. I'm very interested to follow your progress with this.

    Madie
     
    merylg likes this.
  6. Ema

    Ema Senior Member

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    I take Ceftin, azithromycin, Plaquenil, and pulse Flagyl for Lyme disease. The antibiotics have made a substantial positive difference in my functioning.

    I agree with the suggestions to make sure to take a good probiotic. I take VSL #3.

    I know a lot of people that have had good luck with Candistroy (though I think a stronger probiotic would be needed) and Grapefruit Seed Extract for candida. Sometimes people use herbal or prescription anti-fungals along with antibiotic therapy if candida flares become an issue.
     
  7. erist

    erist

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    I am taking Rx antifungals and probiotics. I also wouldn't touch the quinolones with a 10 foot pole. I tell drs I am allergic to them because I took them once about 10 years ago and within 3 or 4 days experienced crazy tendon pain. When I told this LLMD I was "allergic to levaquin" she said "Are you allergic or did they just give you tendon pain?" About fell out of my chair. Says that 90% of her lyme and chronic fatigue folks have issues with levaquin and she never Rxes it anymore outside of a "normal" population setting.

    I've done lots of herbal anti-fungal/anti-bacterial/anti-viral protocols over the years, most to no help. But honestly, the levels of anti-bacaterial herbs being taken on many lyme protocols, I'm not sure they are any less toxic for the body, just because they are "natural." Some of them are quite strong! (and all are expensive)
     
    merylg likes this.
  8. pine108kell

    pine108kell Senior Member

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    Can't say abx were a big success story but did come out feeling better eventually-- can't stay on them forever. Never got rid of lyme or whatever other chronic infections I have. The herxing was very difficult for me and never ended--some symptoms improved but it was slow and nothing close to feeling wellness.

    I would definetly do oral first and see what happens. I also am not convinced that some of these herbal treatments are less toxic. I had many more "side effects" with tiny amounts of the herb samento (cats claw) than any abx--and I've done doxy, levaquin, clindamycin, minocycline, rocephin, flagyl, zithromax, biaxin.
     
    merylg likes this.
  9. erist

    erist

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    Well, here goes nothing. starting 1/4 of my dose today and working up. Still plenty convinced that somehow the human microbiome plays a key role in autoimmunue disorders and I'm about to wage warfare on mine :( but it can't be working anyway, and other people report good things about doxy for anti viral and anti inflammation properties so....
     
    merylg likes this.
  10. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    There is some reason to believe that's due to low magnesium - even so far as the spontaneous Achilles tendon ruptures that led to the boxed warning.
     
  11. erist

    erist

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    Started doxy about a week and a half ago. Started at 100 on my way to 400. After about 3 days I started getting big red bumps on my arms, after increasing to 200 I have them all over my chest, legs, and back as well. They itch and come and go during the day. Fading from pink and then back to dark red. Definitely isn't sun exposure, so I think it's an allergy to the doxy, but I will give it a little while to see if it clears up :( I don't think it is "detox" as it appears to be a somewhat common reaction to doxycycline. It is like having chicken pox again!
     
  12. madietodd

    madietodd Senior Member

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    Tell your doctor. Hives is an allergic reaction......one of my kids gets them from abx, and can't take them. I think this is potentially dangerous.
     
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  13. erist

    erist

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    Yeah, she pulled me off them. Will decide next steps once we see how long it takes my body to clear them. Got worse, started burning more than itching, etc. I'm still hoping some sort of detox rather than an allergy to doxy, since once I decided to take it I was hopeful, having heard how useful it was for both lyme and autoimmune stuff.
     
  14. pine108kell

    pine108kell Senior Member

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    My opinion, based only on my personal experience and reading others stories--not real science or any actual knowledge of medicine--is that if your ONLY reaction to abx is skin related it is probably not a herx but drug reaction.

    I attribute my abx reactions to herx, which are commonly reported for lyme. I always have excessive fatigue, tachycardia, achy, depression, out of breath, etc, etc--although it is posible these are also drug reactions it is strange to have the same reaction for most abx.

    Either way it is really hard for those with cfs to make progress and keep it with abx.
     
    merylg likes this.
  15. nventor

    nventor

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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  17. erist

    erist

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    Almost a month and symptoms have reduced by 95% but still hanging out at 95%. Transient hives and itchiness on chest and legs and arms, often for a few hours at night, after a shower, or just randomly. Nothing like it was those, and the nasty welts are all gone (were gone about 2 weeks after stopping doxy)
     
    heapsreal likes this.
  18. ukxmrv

    ukxmrv Senior Member

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    The other possibility that that the Doxy caused the bacteria to go down and another infection in your body went on the rampage (thinking of what you said about the skin feeling like chicken pox?)

    (regardless I'm sorry to hear it was such a disaster for you)
     
  19. erist

    erist

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    Don't think it was chicken pox. Do think it was possibly some sort of reaction other than an allergic reaction. I guess we'll see when I try another one!
     
    ukxmrv likes this.
  20. ukxmrv

    ukxmrv Senior Member

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    Good luck. My experience was that I reacted to different AB's from different families. Didn't have hives though.

    Be interesting to see if the same response to others (but very frustrating and uncomfortable).
     

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