Topic: Anyone regretted starting treatment with ABX?
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I am a 10 year veteran of the Lyme war and have made it surprisingly well during this time.. I do have some issues but none that are debilitating. They were much worse at the beginning. I am currently taking some Buhner herbs along with supplements..
I would say most days I function at 75%. Now I am faced with the decision to treat or not to treat with antibiotics..
Has anyone started treatment after long term infection and regretted their decision? It seems once you start treatment you have to stay with it or you can relapse and that could be worse than when you started..
I know it's a personal decision we all have to make for ourselves, but I don't want to get caught up in something that I may regret later.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have been doing this a long time too....
My advice is, that you only get as wrapped up in antibiotics as you allow yourself to be. As in, I think the desire to continue once you start is mostly psychological....like, "I've come this far, might as well keep going."
In other words, I don't think there's any reason you can't just stop them at any given time, if you so choose. Especially after treating as long as you have. If you were just starting out, I'd say it'd be different, and you may need to stick with it. Maybe a newbie would risk opening a can of worms, but since you've already done some work with herbals, I don't think that'll be you.
And if you do have more symptoms after stopping the abx, you could always just treat those with the Buhner herbs.
I see how it's a risk, but in my experience, I've been able to start and stop things without longterm problems, when I choose to.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Many of the best Lyme docs pulse antibiotics, or prescribe one day on, one off...
There are many rationales behind pulsing, but one is to keep the immune system engaged. If you are nervous about your body becoming reliant on antibiotics, you could consider this option.
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My husband has been treating with abx since February.
Before starting treatment he had some symptoms.
He hadn't slept well for 5 years, averaged maybe 4 hours a night.
He had GI issues, crohn's symptoms would come and go, always tested negative for crohn's.
Once, for a whole week, he told me it felt as if his cell phone was going off in his pocket but when he'd reach for it, the phone was not there.
But he wasn't "sick". He went to work, to the gym, did work around the house.
Shortly after he started abx, Bart symptoms came to the surface.
In June, he took Levaquin for 4 weeks. He wasn't the same since. Very fatigued. Spent weekends in his recliner, watching TV.
Until 3 weeks ago when he started Rifampin. He has more energy - actually spent the last two weekends playing catch-up around the house.
H he ran out of omeprazol (for acid) and hasn't had any stomach problems.
He even went to the gym twice this week (he's so happy)!
We've wondered too if he should have ever started abx. But now we're hoping he's turned a corner.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The people who recover seem to use abx for at least the most significant part of their recovery. Even when they say they got completely well with an alternative treatment they admit using abx first and getting to about 80%.
If I ever read of anyone who got from very sick to well with only herbs and alternative treatments I would feel more trusting of that therapy. I feel herbs etc are most effective when taken in combination with abx and as a support when you are symptom free and quitting abx.
So I don't regret starting antibiotics. What I regret is quitting them too soon and not seeing a good LLMD that could diagnose and treat all of the infections I had.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I do believe, as Hoosiers says, that sometimes the reliance on abx is partly psychological. The fear of relapse might keep you on them. I have also heard that once you stop the body keeps detoxing and that in itself can cause all sorts of symptoms that might be mistaken for relapse..
Boxermom,I think pulsing may be a good option for me especially since I have GI issues. I will definitely consider this an option. I think I read that you successfully beat Babs, so I was following your posts to help my daughter with hers..
I guess what I fear is what 17 hens is talking about, getting worse and not turning the corner. This is my biggest concern.
And nefferdun, I agree that most do start with abx, even on Planet thrive they discuss this so that makes a good argument for starting them in the first place. I guess as long as I start off slow I won't freak out when that herx really hits.. My herxes always involve the heart so that is why I am a bit hesitant.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Just to clarify for others, though I'm sure lululymemom understands what I'm saying....
...when I said the desire to stay on antibiotics may be psychological, I wasn't speaking of what the Lyme bacteria itself is doing. So I wasn't saying "it's in your head", the illness.
I just meant that I think when people start, then stay on....they stay on because they've already started, so they feel "invested" at that point. I don't necessarily think that's a bad thing, because you need the attitude that you'll stick with a treatment, with almost any illness. But it can become bad when people become determined to stay on something, that just isn't gonna help.
Just clarifying for others, so no one is confused by what I meant. Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I can only tell you my experience. I've had Lyme for 2 years and started treatment with abx 3 months ago. Some symptoms got worse, some got better, some are already gone, while others I never had before are cropping up. It hasn't been much fun, BUT I know I need the abx.
The Lyme was literally affecting nearly every part of my body and mind. I know without treatment I'd be in a much worse place than I am right now.
I do wish, with all my wishing might, that starting treatment didn't mean symptoms often get worse before they get better... but this is usually the life we Lymer's live, at least in the beginning.
Posts: 256 | From Texas | Registered: Jun 2010
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I don't regret it (because it helped at the time clear my brain fog so I could search other alternative med options)
But if I could do it all over again i wouldn't have touched abx's
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sorry, I know a few llnds who went to llmds for abx treatment for their own Lyme & Tick diseases.
Why do you think???
Both abxs & holistic, herbs and rife have their places but one needs a good llmd to access what the particuler body needds.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
canefan, I appreciate your honesty on the subject. I know this can be a sensitive issue because not everyone has succeeded with long term abx treatment.
Sometimes it scares me to death to think that if I had treated with abx, I may be in a much worse place now.
On the other hand, maybe I could have had my life back. I got really sick at 38 and am 48 now, so it took away many of my younger years. I never knew what it was until this summer.
I think not knowing was really tough in the beginning, but in the end it was a Godsend because I felt that if all my test results were mostly negative I should struggle through the symptoms because it wasn't life threatening.
It's all in how we think about it. The mind is a powerful thing.
nellers, I think if I knew what I had 2 years into it, I would have done exactly the same as you. Now it's become a little more complex..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I am currently on abx and don't regret it yet. I've only been treatng this time for a month but in the beginning of the year I treated for 3-4 months but had to stop because of the herx pain, I couldn't control it.
I plan to stay on the abx until I am almost there and finish up with Buhner's protocol. I'm a firm believer in herbs now (before Lyme I laughed at the suggestion). I do take cat's claw now, it helps my inflammation a lot!
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i didn't too well on abx. got c. diff and colon problems.
so yes, i regret it.
i'm going with buhner now.
no more abx ever for me!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
littlebit, i'm in the same situation as you in a way because I had heart issues which I am controlling now with magnesium and Co-Q10. It's amazing what a difference it has made for me. I am no longer on beta blockers!
Buhner's herbs are also helping with that as well.
randibear, did you use high levels of probiotics while on abx? I have always had IBS and can sympathize with your situation. It's quite disabling. If abx make it worse, I won't be on them for long. Still haven't started, going for my appt today..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've had ibs for years and years. at least that's what i was "diagnosed" with.
i can't eat out without getting up and going to the bathroom -- diahhrea!!
no doctor told me about probiotics when taking abx so guess what -- tada!! c. diff -- hospital. not fun...
so yeah, abx will really mess you up if you have ibs or any colon problems. they actually thought they might take mine out at one point -- no way!!
i ordered a ton of probiotics from vitacost and am going buhner. at least i figure it can't hurt me as much as abx have.
oh yeah, let's not forget two hospitalizations for diverticulitis, which i think was also a result of abx. can't prove it, but i think they definitely contributed to that.
so all in all, i've been much much sicker on them than off.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
I read alot and don't say much , most of the time my head is such a mess I can't put a sentence together.
This has been a very informative thread and i would like to add my expirience to it .
I have only been treating 4 months now but have been ill for near 4 1/2 years , disabled for 2 .
I started with abx . I changed to a different abx each month and had no major problems until this month . I started Flagyl .
this stuff really stired things up . I restarted it 4 times and I thing this time i'll make it to full dose tomorrow . My llmd had very specific protocol for diet And I followed it .
Even though I can't realize any progress i feel like I will when I start the next corse of abx.
I see the doc nov. 4 to reevauate and start again. Then I exspect to realize at least some improvment .
I was 54-55 and very healthy, I was a runner and ran 5-6 days a week , on rare ocations up to 10 miles non stop .
These last few years have been heart wrenching because I always felt good , high energy and now I have days can't get out of bed , can hardly walk poor function of left leg and arm , balance is off the chart .
I guess I started rambling and forgot what else I was going to say .
May God Bless US All . BILL
-------------------- Wishing us all well ! Posts: 99 | From Southern Illinois | Registered: Feb 2010
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I've been there randibear, it's dominated my life and I have been controlled by this problem. I'm hoping against hope that maybe abx might help resolve the situation. It's gonna be trial and error I think.
Thanks, Bill for taking the time to respond to this thread. My adult daughter made a turn around when she started Flagyl. I have heard of many others that said the same. I'm sure it will make the difference for you too.
If and when I start abx, I am definitely going to include Flagyl to address the cyst form.
Keep us updated on your condition and if you are finding any improvement with it.
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic