Topic: If you've taken a break from abx, what happened?
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi all,
I've been having major GI issues, and LLMD took me off all abx while we figure out what's going on (Looks like Crohn's, still waiting for more test results & the GI doc on Thurs).
It's been almost a month off abx and I'll start back on Friday, we think, after some parasite testing.
Can't wait - seems like all my symptoms are roaring back, and I feel horrible.
Anyone else ever need an extended break like this, while treating another condition, and if so - when did your Lyme symptoms start returning?
Was it right away, or does the approximate 4 week time frame ring a bell? Seems like my symptoms have gradually increased and today they are raging.
Did you feel like you'd lost a lot of ground when you re-started abx?
Simultaneously dreading and looking forward to a herx, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Amoxi for 2 weeks Doxy for 2 weeks Tini for 2 weeks
then I decided to take a break, and have been off ABX for about 3 weeks now. I have felt awful for the last 2 weeks. I ache really bad, stiff neck, visual problems are worse, vertigo, panic attacks, chest pains, sore ribs and EXTREME fatigue. I am seeing my doctor tomorrow and hoping she will perscribe some more ABX so I can restart them.
I am trying Penicillin, Azithromycin and Ivermectin this time. The ivermectin kills microfilarial worms which my LLMD says he has seen in many of his patients.
Posts: 263 | From UK | Registered: Mar 2006
| IP: Logged |
ByronSBell 2007
Unregistered
posted
usually when I take around 3-5 days off abx, I feel better....
If I have gone off for around a month, that is what you call relapse!
IP: Logged |
posted
I'm wondering the same thing. I have been off of abx for four days so far and right now I feel pretty good.
The Lyme symptoms were going away in the last week of abx tx, and now I'm left with babs symptoms (that I haven't been treated for yet).
I just had the blood drawn yesterday to test for co-infections, but I'm pretty sure I have babs: red bumps that are itchy, sensitivity to touch (my poor husband ), and night sweats.
I'll probably only be off of abx until 8/6 since that's when I get the results back at the LLMD.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, everyone!
Byron, a 3 - 5 day break is usually ok for me too, but this is my first time being off abx for more than a week in 2+ years.
I hoped the symptoms would not return quite so fast and ferociously - looks like the old Bb is still here.
Hatpianka, getting those co-infections treated will help a lot... hope you get re-started when you see your LLMD next month. Keep us updated on how your break goes over the next few weeks.
Chris, hope you get started soon, too, and start feeling better.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I just started back on antibiotics/malarone
Yesterday following a nasty bout with the stomach flu.
I really feel as if I have lost ground.
Especially with babs symptoms.
I am to see LLMD next week. I had to miss last weeks appt. due to illness.
I plan on asking him about this.
I think in my case the virus lowered my immune system
Which allowed something to flourish.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I've had to stop abx because of GI issues. The first time, symptoms worsened after about 3 months. I starting having very bad motor tics. They have since gone away, after going back on abx and taking supplements including B-12 and folic acid.
I've now been of abx since late fall. It took months this time for symptoms to get worse. My LLMD is not convinced it's Lyme and not something else she missed this time. It's fatigue and pain that I'm having.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
tailz
Unregistered
posted
Don't let them tell you that you have Crohn's. I strongly suspect food allergies or intolerances - my colon was about falling out last year around this time, and I was looking skeletal.
Try eliminating dairy, eggs, grains, sugary foods - see how you do.
Then eliminate soy and red meat - see how you do.
Ultimately though, I seem to have a hard time with all high iron and high copper foods. One of my bugs must like iron and copper, so my body is trying to tell me 'no'.
Worth a try if you are desperate. I'd be dead had I not done this myself.
IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I quit antibiotics after being mostly symptom-free for a few months (though it was hard to tell, since the side effects of that class of antibiotics for me are 'tiredness', as is the primary symptom of Lyme). It came back in about a month. I had a reasonably easy time taming it with herbs at that point, not antibiotics. I didn't feel like I really lost ground by quitting- I think I was sick for about two months fairly seriously but got symptom-free on the herbs alone again, with fewer side effects than the antibiotics entailed. I'm sure I'd really knocked the germ load down a lot with the initial antibiotic treatment, and it never got back as high/bad as it had been before antibiotic treatment.
-------------------- Symptom Free!!! Thank you all!!!!
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Geneal, I hope your stomach flu is gone. I've noticed that any time I catch a bug the Lyme flares too, even if still taking antibiotics. We'll both get back on track soon.
Aniek, I remember that you had GI issues as well, but didn't remember all the details - it sounds like you got it back under control fairly quickly the first time. I hope that will be the case again, whatever the cause.
Tailz, thanks - I've been working on elimination diets, trying to pinpoint intolerances. Crohn's has been on and off the radar for the last 12 years or so. This time I suspected yeast or wheat to be at the root, but recent blood work showed the antibodies usually present in Crohn's or IBD. So off to the GI doc I go...
Thanks, Maria. It gives me hope to know that your symptoms came back within a month, too, but that you have gotten it back under control so quickly!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Would like to know this, too. My daughter has had to stop her meds AGAIN due to intense pain and GI issues.
You would think pain would be a good indication of a herx. But, we are thinking brain and spinal cord swelling that is causing sciatic nerve pain.
We want to kill the bugs, not the patient.
Her stomach feels like it's on fire tonight, and she hasn't taken abx in three days.
She HATES taking breaks, but when two vicodin and four ibuprofen don't cut the pay, we decided not to inflame things more.
I think when this happens, her autoimmune disorder kicks in and attacks good tissue. We don't want that.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Kelly, I remember that your daughter was having some stomach issues as well. I was hoping they had resolved.
It certainly is a fine line we are walking...
Something interesting from my LLMD - when I see the GI doc and arrange for the endoscopy, etc, LLMD has requested biopsy specimens to check for bartonella (among others) in the colon. Evidently that can cause inflammation and a lot of GI issues. Just something to keep in mind.
Lymie symptoms are raging again today. Looking forward to a herx when I get back on abx!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi cactus
I took a month off for GI issues in the middle of treatment & tanked big time...was staring into space for hours. In retrospect I had a really high toxin load needed to detox & was not at the point where I was ready to end TX as well.
Did manage to get back in TX after a month off & and didn't seem to loose much ground once I got back on my meds. Was very surpised because I had gotton so much worse while on my month break.
I think the reason for my rapid decline was not only I needed to clear my herxing but also because my co-infections where still out of control.
Once I re-treated for babs, I think for me that's when I turned a corner. I was told that lyme replictaes very slowly so the chance it was the lyme making me replase was slim.
I have been off all abx & only rifing and supps now for over a year because of on going stomach issues. But it took 4 years of intensive TX to get to my ending point on abx ect... Except for my usual summer slump I would say I am pretty stable for now...knock on wood
Hang in there cactus
hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Itsy_bitsyone
Unregistered
posted
HI...
I am new here. Please to meet you.
Had Lyme the last 32 years, finally got dxed about two months ago by my GP (by accident...his RA profile just happened to contain a Lyme titer)
Anyway, so I am going to check out an LLMD in about a month, we'll see what she is like. I'm approaching my second month (about 7 weeks now) on Doxy.
Everyone has GI issues with abx. It kills all good bacteria necessary for digestion. It causes yeast to grow in the digestive tract, mouth, and other places in the body (espcially for us girls!). Some diflucan and probiotics (the good kind that you have to refidgerate...I have one with 10 billion per pill)) and acidopholus can get you regulated so that you can tollerate the abx in the stomach. Since I take a diflucan every three weeks, 10 billion probiotic pill daily, 1 billion acidopholus daily, a container of yogurt, and some greens, I'm actually tollerating the doxy. Its actually So good I may have to add some extra fiber. Just a few weeks ago before I started the probiotics, I was living on rolaids, you didn't want to be upwind from me, and was a frequent bathroom visitor.
Ironically, I had a dog who died of Lyme in 92. Well, it was from the multiple relapses. On and off the antibiotics. I had it then and didn't know it...but knowing how he died and how he suffered worse each relapse, and knowing he had it 4 years as opposed to me since I was 4...I am not coming off anytime soon....not without kicking and screaming anyway. My dog suffered so much before his kidneys and liver gave out and we put him to sleep.
My GP indicated (and he is definately not an LLMD) that he expects abx at least two years straight to start.
My biggest gripe about the doxy is the sun sensitivity. I have long sleeves and gloves in the summer or I will blister in two minutes. I carry zinc oxide and wear a floppy hat.
However, my heart symptoms have greatly improved. And, while the pain and neuro stuff is crippling, I can and have always lived with that. Being ugly now won't kill me either. It is the heart stuff that will kill you. So, I am not going to chance having that come back with a vengence.
Now, this approach may not work for anyone, but it my dog could be a mini model for what happens to the human body in relapse, each relaspe was worse until the end. I'd rather not risk going completely blind or need a pacemaker as opposed to tummy troubles which can be minimized by realizing you have to replace the bacteria and the stuff the abx kills. I felt like a walking fungus my first month on doxy. Now, I feel also normal...rotten, but normal!!
posted
I have to agree with Itsybitsyone. I was only on doxy for a month (and two weeks of amoxycyllin before that), and I didn't have any stomach problems at all.
I took acidophillus - 2 pills with each doxy - and I was fine. When I was on abx a few times earlier in the year (prior to dx), I got a yeast infection right away even with the acidophillus (sorry guys), but I must have adjusted.
Now I'm just hungry all the time. And with no exercise, I've gained all of the 20 pounds back that I had lost earlier... Oh, well, I can always exercise later.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Dana, I think you brought up a great point - as usual. It could well be co-infections rather than Lyme making me feel so crummy right now...
My GI issues started right after my 3rd babs relapse, and I had to stop TX about a month after starting to hit the babs again. And bart's an on-going issue too.
Hi Nancy, it's nice to meet you as well, and I'm so glad you'll be seeing an LLMD. Your GP sounds like a keeper, since he knew you'll need long-term TX. Sorry that you have to be here, but glad you are on the road to getting well.
You are so right about taking probiotics. I take Theralac and stay on the anti-yeast diet with a few slips here and there. Make my own yogurt, too, yum.
Yeast can always be an issue - my yeast cultures have all been neg thus far (not that I have great faith in tests), and I've been on diflucan on and off for the last few months.
Right now I'm off everything because LLMD has ordered more cultures, and the lab suggests being off all abx/yeast meds/supplements for at least a week prior and during the week of the test. I can't wait to hit the bugs again, just hope I haven't lost much ground.
Hatpianka, you're not alone in the weight gain, not that having company makes it feel any better! I usually take probiotics a couple of hours apart from the abx to be sure the good guys make it into my system - think I've read that somewhere. Glad you've found a system that works for you.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Cactus - I actually haven't gotten things under control. I have upper right abdominal pain. I've been through the works of GI tests and we can't figure out what it is.
The last guess was Sphincter of Odi syndrome, which is a spasm in the sphincter that releases the bile from the gallbladder. But I was put on an anti-spasmodic that usually stops that pain and it didn't work. I think it did reduce the pain, but the fatigue wasn't worth it.
I just cut out most fat, and live ok. I also cut out all cow dairy.
My nausea was reduced by getting tests for food sensitivities and cutting those foods out.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
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)
), and night sweats.
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic