posted
Does anyone have any personal experience to share about coming off abx and how long it takes to see symptoms emerge again?
My daughter (9 years old) has been off abx for 5 days and on about the 3rd day her temperature went up 2 degrees from her normal 97.5ish. It was like she had a full blown fever of 101F
Her joint pain/stomach aches/sore throat/headaches are in full swing.
Is it possible for this to happen so soon?
Her LLMD took her off abx (4000mg/day) because he started to doubt the Lyme diagnosis with a negative Igenex. She was also not responding very well to treatment. Responded great at first but then plateaued and started going downhill again. But that's a whole other story...
She has also been tested for coinfections. Negative. Plus she doesn't really fit into any description of a coinfection from what I've read.
Any one with experience of symptoms recurring this soon?
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
lyme is slow growing so the chance of lyme coming back in 5 days are low. Could she have gotton a flu or cold ? A delayed herx?
My only other thought would be to ask your doc about co-infections. What abx was your daughter on? Some abx's will can target the co's as well. Co-infections can come back very quickly.
hoping she can get to feeling better soon
Hang in there Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Nancy, I don't have any stories from others or experience with returning symptoms (at this time) but it would be key to keep your daughter on antibiotics for the straight duration of minimum of one year-3 or 5 years.
I've done high dosages straight for 9 months and am 90% better. I intend to continue treatment for another 6 months minimum to 1-3 more to help be sure I'm better/cured.
Once she plateaus on one set of abx, then change because the bacteria has maybe gotten used to the abx and is able to then hide and reattack. Also key is to change abx periodically so the body doesn't become used to them.
Outside of that, a lifetime of boosters may be necessary when symptoms reappear. That is only my opinion of the treatment. If not fully treated, the bacteria will re-populate,attacking the body bringing back symptoms.
There was discussion before about when you know you are cured. One way to look at it is if one plateaus, abx are changed and changed and changed and perhaps changed and there are no more reactions as the abx are changed, then you may essentially be cured.
Well you really never know but a good gauge might be the CD-57 testing. This testing shows the killer cells from your immune system and the higher the better.
There seem to be different scales for this so be sure to cover this. This seems to be the one test my LLMD really only uses other than to say, no more symptoms or reactions...then probably cured....
For me, my Elisa and Westblot were indeterminate/negative. I had this test done 6 times and all the docs said I don't have Lyme. Finally, I found my LLMD and my CD-57 was a 21 and my LLMD said, this is consistent with Lyme. I've been treating for 9 months and feel pretty good, but my last CD-57 showed 27.
I'm still trying to find out the scale this is based on, but I've also seen others say the CD-57 level doesn't have correlation to symptoms or how you feel. It merely shows how your immune system is doing-which, regardless, is key.
I am curious what other co-infections were tested for and what that 4000mg abx was and for how long has she been treated.
As you and all of us know, there is so much yet to learn but play it safe. Try to keep her on the abx until there are no more reactions and just monitor her closely for liver and white count, etc.. She is young and should bounce back quickly, I would think.
Best Regards, Karl
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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posted
It depends somewhat on how long she's been on abx. I don't think she's been taking abx very long, right?
If that's the case, then yes she can begin feeling worse pretty quickly.
She may need to take the abx for 6mo to a year. Did she have any Lyme-specific bands? I thought she did???
Who did the coinfection testing? Which lab?
My test for babesia was "borderline" but when I took the meds for it I herxed harder than I had on Lyme meds! I definitely had babs.
You said your daughter began going downhill after being on the meds awhile. She was very likely herxing. Either that or she needs to change to a different abx.
No matter how much the CDC waffles & denies it Lyme is still a clinical diagnosis.
As for the test for the co-infections they are also iffy too. There are some 14 or more (sorry can't remember the exact figure) strains of babs but only tests for 2 species of it at the present time.
Although I tested negative for bart I have all the symptoms and responded well in treament for it the first go around.
I would strongly suggest that if she is still so symptomatic to keep her in treatment- To save a life time of misery. I wish I had 20 years ago . I would have had a wonderful life
hope this helps
take care & hope she's feeling better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES I get sick within a few days- I begin to fall over!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is just my expereince and opinion as a lyme patient.
If I am Off abx just a couple days i get MUCH worse.
When I plateau on an abx that means its time to try a different one.... There are a whole bunch that are used for lyme.
Also just because she tsted negative for coinfections doesnt mean that she doesnt have them.
Many of the lyme and coinfections symptoms overlap so it can be hard to say what is what.
If your daughter was getting better on abx than plateaued and your llmd thinks that the one abx should have done it and there are no other options...
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
I never took abx really, so can't say about that. But while my infection was high, I couldn't stop herbs even for a day. Even half a day.
With the time passing, I could stop herbs for 5 days MAXIMUM, then got most symptoms back very fast (and stronger, I felt!). Back to herbs.
It could also be a problem of co-infections, I read.
I do believe symptoms can come back fast when bacterial load is still high. I had that at least 3 times last year, when I thougth I would give herbs a break.
Joint pain came back very fast.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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