posted
Hello all. For the past several years part of my protocol has included
Azithromycin (600mg, QD) 5/7 days Minocycline (100mg, QD) Atovaquone-Proguanil (aka Malarone, 250/100mg, BID) Nystatin (500000 unit, BID/TID) Fluconazole (200mg, QD) 2/7 days, alternating with Zithromax
I should mention that I've also been taking the following probiotics over the same period of time, always 2+ hours away from the antibiotics/antifungals
Visbiome Extra Strength (Rx only, the original VSL#3 formula with a different name. Approx 1/3 packet every other day, usually in Icelandic yogurt or Kefir.) Researched Nutritionals "CoreBiotic" (different strains than typical lactic acid probiotics, 1 or 2 capsule QD) Pure TheraProRx Saccharomyces Boulardii (fungal probiotic as compared to the other bacterial based ones 1 capsule, QD. Added once symptoms began a few months ago)
Given that the original LLMD I was working with has retired, and between the COVID19 pandemic, transitions in insurance and other financial issues, and focus on other family members healthcare needs, I've not been able to see another. In the interim I've been lucky enough to have a primary care who is amenable to Lyme treatment and has been willing to continue my last protocol.
For the past several years all has been more or less stable, with the normal ups and downs up until about 3 months ago when I began to have some GI issues that to date I've not been able to discern the cause. There are too many potential variables and/or causes, and while I've made an appointment with a gastroenterologist last month, I will not be able to see them until July.
In the interim I've been considering discontinuing the antibiotics - the azithromycin and minocycline - to see if doing so brings about any (hopefully positive) changes. I'll of course still maintain the malarone and antifungals, along with the probiotics. Is anyone aware of any concerns discontinuing antibiotic use after so many years?
As far as Lyme and co-infections, I am unsure how much these antibiotics are doing at this point and if they are truly necessary, but I am aware it could very well be keeping the pathogens limited, so I know that discontinuing them could possibly lead to an exacerbation of general TBI symptoms. However, especially with regards to GI symptoms, I wanted to inquire if anyone was aware of any direct impact. In "conventional" antibiotic use - such as GPs prescribing them for a sinus infection, mastitis, or the like - patients are often made aware that antibiotics can lead to diarrhea and similar GI symptoms even after they've discontinued them, but my impression this was primarily the case of dysbiosis caused by the antibiotics wiping out the normal flora, leading to C diff or other pathogens thanks to the imbalance. As far as I am aware, there is not some sort of direct effect of stopping the antibiotics themselves that precipitates some sort of symptom, but I thought I'd inquire just to make sure.
Is anyone aware of any reason that I shouldn't at least temporarily discontinue the antibiotics, or any symptoms or issues I should be on the lookout for exacerbation? Thanks.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I am not aware of any reason not to stop. With your symptoms I believe that to be very prudent. As you plan to do, keep up with the probiotics.
Has any one done a stool culture to see what is most prominent?
Posts: 1856 | From Maine | Registered: Jun 2004
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posted
I have been off antibiotics for years but kept my probiotic and Saccharomyces boulardii.
Recently I had tummy issues and taking away the probioic and S. boulardii solved the problem.
That being said, I would maybe take away one antibiotic at a time and then see how your gut is doing.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10235 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
A complex problem. . . .
It’s good to stop antibiotics sometimes to see if your immune system can keep the bugs in check.
Are you sleeping well, eating a clean diet, exercising with weight resistance bands, detoxing regularly????
Antibiotics are anti-inflammatory which of coarse makes us feel better. So I would imagine symptoms will pop up.
The GI issues could be candida as candida has similar symptoms to Lyme. You could take diflucan or anti-fungal herbs such as monolaurin.
Posts: 3221 | From Florida | Registered: Nov 2016
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posted
My LLMD's treatment protocols were for example so many weeks on 1 week off. Each on week contained some combination of abx, antifungals, biofilm etc and they were pulsed within the week.
Then I was put into maintenance mode where I had 1 week on of the abx combo and a amount of weeks off. The goal was to keep increasing the weeks off without crashing. And when I restarted to see if I had any herx. Finally at the very end he rotated through each abx individually to see if I herx'd on any of them.
I just pulled up one of my old medical notes and his maintenance week. was omnicef, septra and rifabutin MWF, with flagly and diflucan Thurs and friday. Then I was having some issue (didnt feel like reading the entire notes) he added some septra in during my maintenance off weeks because of suspected bart. I had improvements with this so he pulled me off of septra during my maintenance off weeks.
One to thing to note is that while he thinks babesia is a big driver with some ot this stuff I was only treated for it with mepron/coartem for a limited time. And I was only put back onto it if he felt enlargement of the liver. Mepron was not part of my maintenance week.
[ 06-15-2025, 06:46 AM: Message edited by: terv ]
Posts: 854 | From Somewhere | Registered: Nov 2010
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posted
It's no secret, abx definitely affect the microbiome/gut. Abx kill off huge swaths of beneficial bacteria in the body that I doubt probiotics or s.boullardi could ever restore them. The gut is the body's second brain, so I imagine killing beneficial bacteria there isn't a good thing (immune system).
I'm sorry that I ever took abx. If I had to do it over again, I would have done anything else, any other kind of treatment I could find.
-------------------- Remember to keep an open mind Posts: 84 | From earth | Registered: Mar 2019
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Consider switching to OTC inexpensive supplements - nicotinamide, polydatin and vitamin E - Amazon. My personal choice for probiotics is Dr. Ohhira’s. Sorry they are not cheap, but I promise they are VERY effective. Please see my most recent post. My sis got Lyme in 2000 and was on abx - including IV- for 3 years and Mepron too. She has had 10 surgeries and all major joints replaced. She is a trooper and keeps on going. She was initially misdiagnosed and given steroids and the infection soared. Both Bb and Cpn love and need steroids. We are both autoimmune - me due to chronic chlamydia pneumoniae for me. The pathogens are similar in several KEY ways. Never give up and keep learning. P.S. sodium butyrate for your gut will help a lot. Our beneficial bacteria normally make it. It is a short chain fatty acid.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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