posted
A little background: I was diagnosed with Lyme on 11/19 and have been taking Doxy since then. During the time I have been on doxy, I happened to notice to little scratch-like rashes on my hips. Everything is pointing to a co-infection with Bart at this point.
In the last week my husband has come up with the same symptoms I presented with back in November...Numb/tingly hands and feet. His Lyme test came back negative today. On Monday he will be getting co-infection testing done.
To avoid yeast problems, (and because before my Lyme diagnosis I had 4 yeast "issues" in the past year), I eliminated carbs from my diet. I've lost 20 lbs which wasn't exactly easy getting through the holidays I'm just glad to be feeling so much better!
I've been reading and trying to absorb all kinds of information since this diagnosis. I keep coming back to one question in my mind:
How did YOU know when it was time to stop or take a break from the antibiotics, give your own immune system a chance to take care of business and give your natural flora a chance to normalize??
I'm so thankful to find my way here and for everyone's willingness to share what they know...
Brandie
-------------------- "You play the hand you're dealt. I think the game's worthwhile."
C. S. Lewis Posts: 36 | From Illinois | Registered: Jan 2008
| IP: Logged |
I made the decision to stop abx when my liver panels started creeping up. They weren't at dangerous levels yet, but I decided to not wait that long and discontinued abx then.
In retrospect, I feel it was the right decision, as I have not backslid and have noticed improvement since then using alternative treatments.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
posted
Tabers - great post. Thanks for all the details.
This is an interesting topic. I, too, am wondering when to stop abx. For example, I get occasional little twitches so I worry the Lyme is still hanging around. But maybe occasional little twitches are just normal?
Am I blaming every thing on Lyme? Maybe my newer headaches are a reaction to the abx and not Lyme. If only I had a crystal ball.
I agree that the fear of Lyme coming roaring back and it being harder to treat if you go off antibiotics is worrisome.
Any more success stories out there? Or failures?
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
posted
My LLMD is weaning me off abx and has started me on full-Cowden herbs after I was in the 90% range of health for a couple months.
He feels that the herbs go after the remaining bugs avoiding the need for strong abx right up till the end. Also on the herbs you're rebuilding your immune system through detox and adrenal support.
He mentioned that ILADS considers you to need to be 2 months symptom free to end abx, but now that the Cowden herbs are available, he feels that's the better way to go.
So, in the end, whether you go on an herbal protocol or wait for 2 months symptom-free is up to you and your LLMD ..... but those are the methods that seem to be used for determining the end of treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I stopped when my LLMD told me to (after very slowly weaning me off them).
From all I've seen and read, Doxy does not treat Bart, and if you still get those rashes, you should be thinking of addressing the Bart with something that's effective.
(btw I was sucessfully treated with Rifampin and Flagyl).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It took me 3+ yrs to decide/realize abx wasn't for me.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I took various abx for 8 months & I decided to stop them. I didn't feel I was getting anywhere with them. I was still just as ill - if not worse - when I stopped.
I just started the limited Cowden protocol. I think it's going to be helpful.
I may decide to try abx in the future but they just weren't for me. I don't think it's a good idea to overuse abx for a variety of reasons.
I'm not saying everyone should do it that way but I feel comfortable with trying herbal remedies. There are a number of very good protocols available.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Abx are stopped when you are symptom free + 2 additional months beyond that. If you are worried about yeast, make sure you are taking high cfu probiotics or have your LLMD prescribe Nystatin or similar.
As far as your husband test, it means little, LD is a clinical diagnosis and he has the symptoms.
My husband had exact symptoms as well, tested neg to all LD and co-infections. Started treatment and within a year tested positive for LD and Babs. Your immune system can be to "down" to even produce antibodies until treatment begins and it gains ground.
posted
i feel that the antibiotics are treating the symptoms, but not curing it. I don't know enough to decide what the mechanism is (why the abx work)
I am on doxy, rifampin, and biaxin 2 pills of each a day. I tried to go off the doxy, and within days got fever, sweating, twitching back.
i recently tried to go down to one pill a day of the doxy, and got the symptoms back.
so I feel I am going to have to stay on the doxy the rest of my life or until they find a cure.
i dont know about the rifampin and biaxin, havent tried going off those.
Posts: 615 | From maryland | Registered: Oct 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I stopped abx after more than 3 yrs and I was far from symptom free. I stopped them because they were not working for me. In fact abx became my enemy.
When I became disabled and barely able to take a shower and put clothes on and then get to the couch to rest, I realized this isn't working.
I moved on to try something else.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Just wanted to respond to LymeinHell's post that "Doxy doesn't treat Bart." Doc J is treating my son for Bart and prescribed Rifampin and Doryx (a gentler form of Doxycycline) to treat it.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yes Doxy does treat a certain strain of Bart, absolutely. Here is the label insert for Doxy (doryx- brand name time released doxy). There are many, many strains of Bart.Look under Gram-Negative Bacteria. In the "find" search box type in Bart: http://www.fda.gov/cder/foi/label/2005/050582s024lbl.pdf
Rifampin can help bart according to some LLMD's, is preferred for Ehrilichia, but neither is mentioned on the FDA insert.
The best combo for Bart and/or Ehrilchia is Azithro/Flagyl.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
I'm just glad to be feeling so much better!
![[Smile]](smile.gif)
Printer-friendly view of this topic