Newbie: antibiotic break?

Hi FeelingLeftOutGal

How many abx will you be pulsing?

Can you ask him if you can treat Babesia/lyme first and then switch to Bartonella/lyme?
Maybe he would be open to that?
It wouid remove one med from your protocol at least.

Have you been taking probiotics - daily and a few different ones? That is necessary when taking abx.

It sounds like you are herxing from the penicillin.
When the abx kill the bacteria - it creates toxins that flood your system - these toxins can cause an increase in current symptoms plus new ones.

FeelingLeftOutGal said...
Well he’s going to treat Lyme first (2 weeks on 1 off w 3 antibiotics plus diflucan) then Lyme/babesia (2weeks on 1 off w 3 antibiotics plus flucanozalole) then Lyme/Bart (2w on 2 off, 4 antibiotics plus diflucan), then repeat the cycle. Is this safe? Do people fake this many abx at once? I also feel like the herxes and nausea will be prohibitive

I stopped the penicillin 4 weeks ago but still feeling joint pain so don’t think it’s a herx, never had it before abx treatment

sounds like the Dr. J protocols....except Dr. J doesn't rotate the different protocols. He will do Babesia for several months....than Bartonell/persisters. (while treating lyme throughout)

I currently take 3 abx at once....3 days a week for 1 week on and 3 weeks off.

A prior protocol, I took an anti-malarial, plus two antibiotics 3 days a week - for 2 weeks on and 2 weeks off. (for several months) (and fluconazole for two days on the second week.

Sometimes the symptoms that flare during a herx....can take a while to go away.
I have been off my abx for 2 weeks now and I'm still feeling the 'flare' from the abx....it's just starting to ease up.

Thats a very aggressive protocol. As Girlie pointed out, you have to make sure you are taking very high strength probiotics every single night with any protocol, even just 1 antibiotic. If you get the right probiotic (100 BILLION CFU's) that will address the problems you described.

That protocol sounds quite extreme, like something someone would do as a last resort. Have you been infected for a long time?

Personally I dont put too much stock into pulsing.(2weeks on/2weeks off) I understand the theory behind it, (to 'trick' the bacteria out of cyst form) but most of the Lyme doctors that I follow use a continuous treatment. And I tend to agree with that method. I think you have to continuously chip away and not give any chances for a 'regroup' so to speak. 2 weeks is an eternity in the cellular world. I imagine one of the reasons he would pulse that regimen isnt so much treatment strategy, but more so to give your body breaks to handle that strong protocol. I dont think anyone should pulse unless 1) They are 'wrapping up' a successful treatment / "maintenance" therapy. or 2) Longterm continuous treatment has failed.

4 antibiotics at once Plus diflucan is very extreme. I personally would not take more than 3 at any given time. He is really pulling out all the stops. This is about as aggressive as treatments get outside of IV therapy.

Is it safe? Is it tolerable? It sounds like you havent taken too many antibiotics besides doxy and mino. Jumping right in to a 3-4 antibiotic protocol plus diflucan isnt something you can do overnight. Your body will have to adjust slowly, adding 1 med at a time and increasing dosage.

Some people tolerate multiple antibiotics just fine, over long periods. I think overall, the dangers of long term antibiotic use have been exaggerated, for the most part. But taking 3-4 at a time you are bound to notice some side effects even if they are just mild. Do antibiotics cause symptoms? Absolutely. And the more new antibiotics you take, the more you might wonder if your symptoms are from the drugs or the disease. I remember wondering the same thing and that very question actually caused me to stop my treatment for years just from all the uncertainty. Thats why I personally feel its so important to make treatment as simple as possible. You want there to be fewer variables to try to pin down. But it all depends on the individual. Some people react badly. You just have to listen to your body and go 1 step at a time.

I think some Lyme doctors just load patients up with scripts and send them on their way. I'm not saying your doctor did that but even some of the best DR's forget to tell people to take probiotics or dont mention certain side effects of meds. At the end of the day its your body. Do you think you need that much of a hardcore protocol?

I also think a lot of Lyme doctors unfortunately tend make treatments overly complex and keep patients confused and chasing their tails. Some of them constantly move the goalposts and make excuses why their treatments dont work. I have seen some people go to the same Lyme doctors for years without success. They give the excellent talented LLMD's in the field a bad name. Not saying your doc is bad, but its something to be aware of as a Lyme patient.

Again, to me that sounds like a protocol that would be given to someone suffering badly with a longterm disease that had already failed other treatments. Personally I would never go from a couple courses of doxy and mino and penicillin right to the protocol that you described. There is A LOT of middle ground that could and frankly should, be tried before that.

Treating this disease is about trial and error. You dont want to undertreat, but you also dont want to overtreat. What you want is just the right amount of treatment. You may not need a sledgehammer to kill this bug. Why use a bazooka when a knife might do the trick?

Thats what happened with my treatment. I had 5 stages I was going to do. But I only needed 3. I had planned to take rifiampin and tinidazole along with doxy, but doxy with ceftin and a lot of Buhner herbs did the trick. So I decided to stop there because I was better. Point being you may be able to kick it without going so full nuclear. You might not need 4 antibiotics. You might just need the right one or two.

And if you go straight from light treatment to nuclear and skip every other step in between, where do you go if that happens to fail? The only other option from there would be IV. You want to have as many options as possible and only use as few options as possible. That way if something fails, you have room to make small incremental adjustments. That gives you a better chance of pinning down what your worst offender is.

Im not second guessing your doctor. If you trust him and he says he has had success with this method, then go for it. I know how miserable Lyme is and if you feel this is your way out, do it. It can be done safely if you follow some simple steps and stay aware.

You could also combine 1 or 2 antibiotics with any number of Buhner herbs, and then ratchet up treatment from there if its necessary.

But ultimately its your call. You have to be honest with yourself and use your intuition. Only you know your situation best. You know yourself and the current and past state of your disease better than any doctor. Its your body. He wont be taking those pills, you will.

Dont let him push this on you if you dont feel comfortable though. You have a right to participate in your own treatment. You can suggest your own protocol. But that means you need to research which meds are best for your condition, and what are potential side effects? How are other doctors treating?

You are asking the right questions and coming here is a good start.

The protocol listed is quite aggressive, and since it sounds like you are somewhat new to this, I would research more before I jumped into a protocol like that head first. It just sounds really hardcore to me personally.

LogMoss, thank you. Very insightful and great points. This goes along w what my gut (pun intended) was telling me, that this was too much. I will see if we can start with a more moderate approach first.

Christina, do you mind if I ask why you tried before Dr Js protocol? How long have you tried his protocol? “Some symptom improvements” is a bit scary. To go through all that and have some, which to me sounds like you’re implying very minimal, improvements I’m sorry you have to go through this. I’m sorry we all do. Will you stay on abx if you’re only making minimal gains, or try something else? What’s your plan?

Many thanks all

I've had symptoms for several years now and became VERY severe in 2018. Saw a doctor while very severe and only became worse (non-ABX treatment - barely started). Went to another doctor. Did four months of treatment (basically two months pulsed Minocycline, Tinidazole, and Ivermectin and two months of Rifampin and Tribiotics). During this four months, I improved from being nearly 24/7 bedroom bound (on my bed nearly all the time) to being able to take 1-2 mile walks. It seemed that all symptoms were improving (biggest improvement in 3rd-4th months). Doctor had me go off ABX at end of four months (I think she thought remaining symptoms were mold), and I relapsed within about a month.
At my request, she let me do another 2 months of Rifampin, but I can't say it helped much, so I was only progressively getting worse after that.

I began reading and learning on this forum and saw my present PA being recommended, found that she was only about 3 hours from where I live. As I continued to read on this forum and to pray, it was becoming clear that I should look elsewhere for help, so I made an appointment with Dr. J's PA (has her own practice in Asheville).

I have been doing Dr. J's protocol for about 7 weeks now. For how sick I have been, I am encouraged to be noticing improvement already. Don't plan to start hitting Babesia until early January. Symptoms seem to indicate at least Lyme, Babesia, and Bartonella.

Because I've had more than just minimal gains with ABX in past, I am encouraged that it may be that way again.

If all goes as planned, I will be doing the Babesia/Lyme protocol for 4-6 months, then the Bartonella/persistors protocol for 4-6 months, then possibly a maintenance protocol for a couple years.

I will mention that I also try to follow a clean, healthy diet; take some herbs and supplements, etc.

I'm sorry you are going through this also. I've been able to learn a lot on this forum so keep asking questions and reading!

Note: I haven't tolerated some herbs very well up to now; at this point, I seem to tolerate ABX very well.