Transient improvement from antibiotics - help be troubleshoot

[Cloud]

If you don't have a herx reaction, which I do, taking one or two zithromax a week would probably be palliative for many. It might have other side effects though as it is kind of rough on the gut and who knows what else. I have to admit that if I did not have herx reactions it would be hard to resist pulsing antibiotics on a more regular basis than I currently do.

This is basically what I have been doing for some time now. The problem is that it doesn't work to set any kind of schedule for the pulsing; The need and response is not predictable. I have been using them more PRN (as needed), which is also very hard to predict when it will be beneficial (not to mention creating who knows what kind of superbugs).

My typical abx run: I'm in a flare and can see no obvious cause. I take either Azythromycin or Clarythromycin 250mg BID (2xper day). The second day, or at most within 24-48 hours, I get a profound clearing of symptoms. I continue with improvements 1-3 weeks but then begin to plateau and sometimes slide back down (not herxing). I can continue with the abx indefinitely without any further improvements (I've gone a year and more at least 3 times). I stop the abx and feel good for 1-3 weeks before sliding right back into pre abx condition. It doesn't matter the abx, combination of abx's, or the dose, this same thing happens every time.

I think the concerns for long term abx use are valid. Really hard on the GI system, including the liver and kidneys. My liver does not like abx. But it seems that pulsing would be ok.....yet not really ideal if the response is actually from killing bugs. I still lean towards immune modulation.

 

[heapsreal]

This is basically what I have been doing for some time now. The problem is that it doesn't work to set any kind of schedule for the pulsing; The need and response is not predictable. I have been using them more PRN (as needed), which is also very hard to predict when it will be beneficial (not to mention creating who knows what kind of superbugs).

My typical abx run: I'm in a flare and can see no obvious cause. I take either Azythromycin or Clarythromycin 250mg BID (2xper day). The second day, or at most within 24-48 hours, I get a profound clearing of symptoms. I continue with improvements 1-3 weeks but then begin to plateau and sometimes slide back down (not herxing). I can continue with the abx indefinitely without any further improvements (I've gone a year and more at least 3 times). I stop the abx and feel good for 1-3 weeks before sliding right back into pre abx condition. It doesn't matter the abx, combination of abx's, or the dose, this same thing happens every time.

I think the concerns for long term abx use are valid. Really hard on the GI system, including the liver and kidneys. My liver does not like abx. But it seems that pulsing would be ok.....yet not really ideal if the response is actually from killing bugs. I still lean towards immune modulation.

hi cloud,
your experience is similar to my experience with doxycyline although i initially feel worse, i usually pulse them 2days on and 1 off and feel better on the off days but i eventually feel ok on the on days and then it plateaus out. I sometimes wonder if the bacterial infection just go's into hiding and is the reason why a few experts recommend pulsing abx. As for avoiding side effect i take nystatin with doxycyline to prevent yeast/candida infection in the morn with a good probiotic at night away from the abx. Im leaning towards ani-inflammatory effects too, maybe co-infection.

cheers!!!

 

[FunkOdyssey]

Not all antibiotics are equal in their effects on the gut flora, some are far worse and far better than others.

Fortunately the most promising vs. XMRV is also one of the least impactful. From the FDA prescribing information:

Adverse Reactions

Due to oral Minocyclines virtually complete absorption, side effects to the lower bowel, particularly diarrhea, have been infrequent.

 

[redo]

Minocycline against XMRV? Please do elaborate FunkOdyssey.

 

[liquid sky]

I have an immediate improvement with antibiotics. It only lasts for 3-5 days, then I have severe worsening of all symptoms. I have been dx. with Borrelia though Igenex Lab, but not CDC positive.

Tried for a couple of years to tolerate antibiotics, but they ended up being just plain intolerable, especially with pain and neurological symptoms.

I don't think the initial improvement could be related to killing of bacteria, gut or otherwise. I do think it has to do with immune modulating properties, a shift that decreases inflammatory cytokines. They don't seem to be able for most folks to shift the immune system long term. Whatever is causing the inflammatory cytokines to predominate is too strong. (HGRVS?)

 

[redo]

Thanks for letting us know what your experiences where liquid sky. Reminds me much of how things happen with me with certain antibiotics.

Would you mind sharing which antibiotics made you better transiantly? (with me it's metronidazole, biaxin, ceftriaxone, minocycline and more).

 

[liquid sky]

Hi Redo. I've tried a lot of antibiotics, can't remember them all. I remember Ceftin and Doxycycline as the best tolerated. I absolutely had horrible effects from Flagyl. I've tried more, but it seemed like I tolerated the first ones I tried the best, then no other ones were tolerated for very long.

That's why I think it is a shift in the immune system that decreases inflammatory cytokines that relieves my symptoms. I made it a whole month on the first two I tried, but still had the only real improvement for a few days. After that, I could only tolerate any antibiotic for only a few days to a week. They don't seem to be able to make that shift long term.

Others with Lyme could find an antibiotic that helped and stay on it with resolution of their symptoms. They only got sick if they went off of them. Never worked that way for me.

 

[mellster]

I put myself back on mesalamine, which is not an antibiotic but an anti-inflammatory with some anti-microbial properties. It is very mild but it helped me when my gut acted up majorly with daily stomach cramps and it is starting to act up again. I am relatively certain that for me it all originated in the gut (have tested neg. so far for some enteroviruses) - I don't like ABx but there is def some merit to targeting gut microbes in any way possible. Maybe it's time to visit Dr. Chia..

 

[glenp]

Minocycline

Is anyone pulsing minocycline?????

glen

 

[redo]

I've been thinking lately that perhaps what I am 'hitting' is a stomach pathogen, so within a month or so, I'll try to do a combo and add Omeprazole to the mix. That's the way the stomach pathogen Helicobacter pylori is handled...

 

[helios]

Is anyone pulsing minocycline?????

glen

Glen, I have just started the cecile jardin protocol, which uses pulsed ABx (mainly tetracyclines). I am currently on minocycline along with doxy. The Sth African doctor developed pulsed antibiotics to treat CFS patients who she determined had rickettsia. I have had path tests for rickettsia but they came back negative, but the infectious diseases specialist I was seeing was disappointed that I was negative as the other immunity markers he usually monitors had the same pattern he has seen in his other patients with rickettsia. I showed up as positive for 2 strains of rickettsia with Bioresonance testing + that I am fighting an infection with conventional path tests, plus with my past experience with feeling great (short term only) on ABx, my doctor is giving this protocol a go, which I was pushing to try.

This post caught my eye, as I too have had periods of fantastic health thanks to ABx. The thing I noticed was that when the ABx or dosages or schedules were changed, was when I felt great. In the past the doctors would ignore this aspect and when I reported feeling great would just keep me on that ABx and same dosage for months, and unfortunately for no benefit at all. I will make another post back in a month or two when I have done a few cycles.
I have taken mino before, when I tried the Marshall protocol. I did not notice any significant improvment on mino but when I took azithromycin in conjuction I felt pretty good. When I added the 3rd ABx (I think it clindamycin) though my health really declined.

 

[xrunner]

Is anyone pulsing minocycline?????
glen

I have used Minocycline for some time, on and off, but no pulsing. Pulsing doesn't work for me, I need at least a week to get some bacterial killing going...

 

[redo]

The thing I noticed was that when the ABx or dosages or schedules were changed, was when I felt great.

Fascinating! I have noticed the same, quite a lot of times...

 

[helios]

Probably the best episode of health I had in 20 years was when I was on Doxycycline and Clarithromycin. I thought it was something like 1 doxy a day and 1 clari every 3rd day. I was on that for about 4mths and never really noticed much improvement. His focus at the time was treating mycoplasma infection.
The doctor then decided to switch them around and it was clari every day and 1 doxy every 3rd + I also thought the dosage might have changed as well. Within 1 day of that change, I felt awesome, like I did when I was a teenager with no CFS. It lasted I thought for about 5-6 weeks before it wore off. The doc kept me on that for the next 7 months and it made no difference. I am pretty sure I told him, to switch things around again, but I cant remember his answer, but I know he didnt. I then decided to switch to another doctor someone recommended who was smart with infectious diseases, but frustratingly he also could not pick up on the significance of the switch in dosage/ABx/timing.
It is weird, because in that episode, I actually was taking the same ABx I had been for months, all I did was change the timing I took them (maybe also the dosage) and suddenly wammo, total improvement, then it wore off. With a situation like this I dont know if you could describe it as anti-inflammatory effect. Its like it fooled the bacteria, until they adjusted to it. If ABx do provide an anti-inflammatory effect (and tend to think they do because of change to brain fog) then why does it wear off?

A month back I had a great spell of health which lasted about 3 wks. I took Biltricide (anti-parasite) then Nizoral (anti-fungal). It did not improve my cognition at all which was a real shame as this is my biggest problem. It did however improve my appetite a bit, my strength, my energy, I put on weight (which is so hard for me), my libido, my sleep, my desire to go out and socialize + get things done, and my sense of wellbeing. It is hard to say how much was due to Biltricide, but because it lasted 3 weeks I know Nizoral was doing well for me. When I read how both of these meds are to be used just for short term only, I was so disappointed. I see my doc in 2 wks time, so I find out what he will now come up with. (I have also just started Cecile Jardin's protocol)

 

[redo]

Probably the best episode of health I had in 20 years was when I was on Doxycycline and Clarithromycin. I thought it was something like 1 doxy a day and 1 clari every 3rd day. I was on that for about 4mths and never really noticed much improvement. His focus at the time was treating mycoplasma infection.
The doctor then decided to switch them around and it was clari every day and 1 doxy every 3rd + I also thought the dosage might have changed as well. Within 1 day of that change, I felt awesome, like I did when I was a teenager with no CFS. It lasted I thought for about 5-6 weeks before it wore off. The doc kept me on that for the next 7 months and it made no difference. I am pretty sure I told him, to switch things around again, but I cant remember his answer, but I know he didnt. I then decided to switch to another doctor someone recommended who was smart with infectious diseases, but frustratingly he also could not pick up on the significance of the switch in dosage/ABx/timing.
It is weird, because in that episode, I actually was taking the same ABx I had been for months, all I did was change the timing I took them (maybe also the dosage) and suddenly wammo, total improvement, then it wore off.

If you ask me, I'd say it's no wonder why the other combination (normal dose clarithromycin, low dose doxycycline) worked better. It almost always does. I seldom hear anyone who's had it the other way around. 1 doxycycline tablet every third day is pretty much the same as no doxycycline if you ask me...

Clarithromycin, or biaxin as it's often referred to, is often reported to help. Right now I am on low dose biaxin and normal dose amoxicillin. Why? Because it makes me better, and prevents a relapse. Switching things around (changing regime) normally makes me better for a while.

With a situation like this I dont know if you could describe it as anti-inflammatory effect. Its like it fooled the bacteria, until they adjusted to it. If ABx do provide an anti-inflammatory effect (and tend to think they do because of change to brain fog) then why does it wear off?

Very important questions...

 

[xrunner]

If abx make you feel better straightaway, they're not working as they should. I had a similar experience a couple of years ago whilst on Doxy and Rifampin. I felt an almost immediate improvement in energy and sleep patterns. However, as soon as I stopped I slipped back to the level I was before. That could have been explained by their anti-inflammatory effect but I do not know for sure.
I don't think it's got anything to do with fooling the bacteria. When abx really work and kill or weaken the bacteria so that the immune system can kill them, what I have always experienced was a worsening of symptoms. I would start feeling worse (chills, foggy, fatigued, night sweats etc) from about the third or forth day in and it escalates from there. Then, after finishing the course, a few days later, I would experience a stable step forward. I've also discovered that taking a break of a few months a couple of times a year helps maintain the same abx effective over time.

Helios,
regarding Biltricide, you may want to have a look at the Klinghardt's anti-parasitic protocol. I had a short trial of Ivermectin and experienced an unexpected herx, I'm now looking into trying the full protocol. Klinghardt maintains that dealing with the parasites first should help make shorten use of antibacterial and antivirals. I find it a very attractive theory. All the best

*Klinghardt anti-parasite treatment-Biltricide (600 mg) twice daily for two days
-Ivermectin 12 mg one tablet four times per day for fourteen days (take at the same time as Pyrantel Pamoate)
-Pyrantel pamoate, 1000 mg per day at bedtime for fourteen days. Fill at Key Pharmacy
-Albenza, 200 mg (after completing fourteen days on Ivermectin and Pyrantel). Two tablets twice per day for fourteen days
-Alinia 500 mg (after completing Albenza)- Two twice per day for fourteen days
Order of treatment: Biltricide-Ivermectin-Pyrantel-Albenza-Alinia

 

[cigana]

I improve greatly on 3g amoxicillin. I have tried many other abx (mino 200, azithro 400, doxy 400, ketek 800 + more) in different combos and they do nothing.
I too thought it was the anti-inflammatory effect because it was so rapid (within about 8 hours). My doctor said the anti-inflamm effect was minor in comparison to the bacterial killing properties - he said most likely I had gut bacteria crossing into the blood stream. (I do not know if the effect wears off for me because I've never had amoxi for more than a week).

Interestingly, my cytokines (which are usually high) all normalize on standard abx, though I don't feel better, making me realize that it was not the immune regulation of cytokines that are responsible for the effect (at least not the ones I could measure). Redo - can you systematically measure cytokines on your different protocols and see if they actually are important?

I think that information could be invaluable. Maybe we should try anti-inflammatory herbs in high doses. See for example Stephen Buhner's book on Lyme where he discusses the immune modulating effects of herbs and roots and the need for very high doses.

Also worth seeing if you respond on abx that have been shown to have little or no immune modulating effects.

Also worth noting all abx mentioned frequently on this thread are used to treat Lyme. Lyme can change form, which could take days or weeks, so perhaps you are just seeing Lyme morph? To treat morphing forms you need triple therapy.

 

[DataDude]

Hi @Mya Symons - hope this finds you well. I noticed that in this post you described feeling better on Rocephin, and I'm wondering if you tried it again, and if not why not?

I ask because I have been advised to try Rocephin for a Lyme diagnosis with CFS symptoms. Thanks for any insight you can provide

There is another thread here where someone posted a paper that talks about the anti-inflammatory effects of antibiotics. If you can find that one, it is interesting. I was in the hospital recently with a post-op infection and they put me on a variety of I.V. antibiotics. I have been in pain for over 11 years now without a break. But, during the time I was on those I.V. antibiotics I did not feel any pain at all, not even from the post-op infection. For a day or two I had wishful thinking and thought maybe I had an all over bacteria infection that was cured. But, as soon as I was off those antibiotics for a couple days all my symptoms came back. It is probably not good for the body to be on antibiotics for a long time. My docotor kept on monitoring me for pseudomembranous colitis while I was on them. However, perhaps they should start studying the anti-inflammatory effects of antibiotics and maybe they could reproduce that without all the side effects of taking an antibiotic for a long time.

Regarding the possibilty that you feel better for a few days because the antibiotic is fighting off bacteria, but it only lasts a few days: Could you be herxing? Some bacteria, when it dies off, what is left of the bacteria is somewhat poisonous to the system and must be filtered out. This can make you temporarily feel sicker. People with Lyme disease go through this often when taking antibiotics.

I had many different antibiotics while I was in the hospital, but I believe the one I noticed the most difference with (as in the pain went away) was Rocephin (ceftriaxone).

 

[Mya Symons]

Hi @Mya Symons - hope this finds you well. I noticed that in this post you described feeling better on Rocephin, and I'm wondering if you tried it again, and if not why not?

I ask because I have been advised to try Rocephin for a Lyme diagnosis with CFS symptoms. Thanks for any insight you can provide

I haven't tried it again because I no longer have a post op infection. And, I don't have a doctor who would prescribe it unless I had an obvious infection. I found a lab that is willing to take my blood for a lyme disease kit and mycoplasma PCR kit. However, I am paying about $1000 a month on medical bills and can't afford to do it right now. Hopefully, in about 4 months, I should have everything paid off and be able to afford the kits. The next problem would be figuring out how to get the kits overnighted back to Maryland. I live in the Mountains and this is hard to do. Perhaps it will be easier to get it through during the summer.