Azithromycin / Zithromax and RA

[carries]

ME too! That is why I ask!!! I felt amazing on it! Completely pain free!

[wildschild]

Hi,
I am not in remission. I just started the mino and Azith in september and have had RA for 25 years so it will probably take a while. I feel kind of sick to my stomach when I take my first dose in the morning even if I eat something but the feeling doesn’t last long. I think I am gradually getting better but just when I have those thoughts I get slammed with a flare. I have also been on a gluten free diet too. I started that in September as well. My stomach felt really good on it but lately I have been eating things I shouldn’t. I did the diet to see if it helped the RA but not sure it did anything for it. I do feel I am gradully getting better but it is still tough. I am having big issues with my knee and I am having a knee replacement just after Christmas. I have been having to go in for Iron IV’s cuz of my low iron. They are trying to avoid a transfusion with this surgery. But I had a really big flare Monday and I am wondering if it was due to the iron cuz one of the side effects is soreness. I could barely get around. I was so much better the next day. It is hard to know what causes what when you have these issues. I will let you know as I go if this combo is working for me.
Nancy :0)

[carries]

Thanks Nancy! I wish you lots of luck with your surgery and the new combo of medicines…I hope you do see great improvements with it. Please keep me informed! 🙂

[Texas T.]

I take brand name Minocin 100mg 7 days a week and Zith 250mg M-W-F. When I have a flare – I hit it with Zith every day for 10 days – seems to knock it out.

I have never had any stomach problem with any of these meds. I eat lunch around 12:00 – and take the antibiotics around 3:00. I’ve heard we need to take AP on an empty stomach – and I’ve heard your stomach is empty 2 hours after you have eaten – so that’s my plan and it works well for me.

When I take NSAIDS (Haven’t taken them for about a month now) – but when I do take them, I take them with my food – because your supposed to take them with food to avoid stomach problems.

I take my probiotics at night before I go to bed. I have no proof – but the way I see it is those probiotics get to be in my belly all by them selves overnight to work their magic uninterrupted and undiluted by liquids or food.

But the most important information I need to share with you is I am WELL!!! I did have two flares in 2010 – January and July – but these did not stop me in my tracks. I walked around all day at a theme park in TN for 6 days – yes – my knee was fat – but it did not stop me in my tracks! When the yucky arthritis first moved into my joints – it would stop me in my tracks. But not anymore!!! I AM WINNING THE WAR!!! 😀

Teresa

[carries]

Thanks Teresa for sharing your regime. Do you take the zith…once or twice a day maybe i will try that for ten days. I have been flaring alot lately and had to go back on prednisone. I would like to get off it as soon as possible. I hate this stuff. Did you still take the mino with the zith for the 10 days or did you take a break from it.

[Texas T.]

I take Minocin once every day – no breaks from it – ever. On a normal schedule, I take Zith M-W-F. When I flare, I take Zith for 10 days straight along with the Monocin. I take Prioxicam (Feldine) once every day – except for the past month – I have not needed the NSAID – no pain.

[stwig]

Hi All,
After about a year of near remission (all my blood work numbers were in the normal range except RF, which was barely elevated around 10) I started flaring around October 1st. I have done a couple of MethylPrednisone packs during these past 8 weeks to try to keep the swelling under control. Both times, the day after I finished the 6 day treatment with M-Prednisone, the swelling and pain came back. I see Dr. L and Dr. F in Riverside. Dr. L added Azithromycin to my treatment. Now I take 500mg Azithromycin on Tues and Thurs to supplement my MWF Mino. Unfortunately it has been a couple of months and I am not seeing any improvement. My condition has actually continued to worsen. Cannot turn my head, bend my fingers, lift my arms, or walk very easily.

I am really concerned, and wish I had a clue about what has happened to send me back to where I was over 3 years ago when I first got sick. I have red hot spots, and I have so much pain, I cannot tell a flare from a herx because I hurt all over.

Does anybody who takes Azithromycin have seriously strong herx reactions? Does this sound normal?
Is the treatment with Azithromycin as glacially slow as the treatment with mino?

I realize that reading about someone who had gotten better on mino, only to see their progress vanish is disheartening to everybody who looks to this site for optimism and encouragement, and I apologize for that.

I am just looking for any clues to try and understand what has happened.
Starla

[lynnie_sydney]

Starla – am so sorry to hear about your set-back after such a good run. As your post came at the end of a pretty long thread, I’m wondering if some people may miss it. You may want to start your own new thread asking for input re this sudden onset of symptoms after such a good run. Onbe thing that came up for me is to wonder if you’ve been tested for Lyme (through Igenex). I know that has been the answer for some who find their improvements stop on just mino. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[chrysalis]

@Pauyen wrote:

Thanks guys…
Hi paul, just wanted to share that I found the fatigue and not being able to concentrate one of the hardest things to deal with, just when you need your brain the most it won’t work and it is so frustrating. I live a really physical life in the country and suddenly I can’t chop wood open a jar, tried to use a drill and nearly broke my wrist and I felt like I was so lazy and useless. After a few months I just gave in and if I needed to lay on the couch for 3 days straight that is what I did. You just can’t argue with your body while you are trying to learn so much about your disease, give yourself a break and your body makes you learn patience which you really need at present. Good luck chrysalis
So much information :shock:, hard to take in :S I dont know how you guys do it. I find it so hard to concentrate on things, often just have to relax and flake out on mindless TV.

Paul

So from my initial gathering… I may have been diagnosed incorrectly, lol. I was diagnosed first to have the spinal athritis, then RA by another rhemy, but it maybe ReA lol. I dont know whether to laugh, cry or be so angry because Arthritis as a whole and similar diseases havent had the billions of dollars of research (in Antibiotic treatment) which it obviously deserves.

Overall, what other ‘non curable’ diseases have had similar treatments overlooked by the ‘all knowing’ mainstream medicine. Makes me sick just thinking about it and very very sad, that such a large group of people put greed before peoples health and wellbeing.

[stwig]

Hi Lynnie,
Thanks for the reply. I asked my dr about additional tests for Lyme, yeast or alternate pathogens. He did not think it was necessary. I admit that I did not push him on the topic, but looking back I think that I should have. There has got to be a reason as to why I could feel so much better, for so long, then wham, back to the beginning.
Starla

[Maz]

@stwig wrote:

I have done a couple of MethylPrednisone packs during these past 8 weeks to try to keep the swelling under control. Both times, the day after I finished the 6 day treatment with M-Prednisone, the swelling and pain came back.

I see Dr. L and Dr. F in Riverside. Dr. L added Azithromycin to my treatment. Now I take 500mg Azithromycin on Tues and Thurs to supplement my MWF Mino. Unfortunately it has been a couple of months and I am not seeing any improvement. My condition has actually continued to worsen. Cannot turn my head, bend my fingers, lift my arms, or walk very easily.

I am really concerned, and wish I had a clue about what has happened to send me back to where I was over 3 years ago when I first got sick. I have red hot spots, and I have so much pain, I cannot tell a flare from a herx because I hurt all over.

Does anybody who takes Azithromycin have seriously strong herx reactions? Does this sound normal?
Is the treatment with Azithromycin as glacially slow as the treatment with mino?

I realize that reading about someone who had gotten better on mino, only to see their progress vanish is disheartening to everybody who looks to this site for optimism and encouragement, and I apologize for that.

Hi Starla,

So sorry to hear you’re in the midst of a flare. This is such a bummer after doing so well, I couldn’t agree more. Please always feel free to share your ups and downs…this is a place where we want transparency to reign. We want people to share their road back, which isn’t always straight. There are hurdles to be got over and we all learn from the process.

A few thoughts came to mind as I read your post. I don’t know if anything will help or not, but will jot them down for you, anyway.

Pred is really just a masking drug – feels miraculous when the pain goes away so swiftly, but it’s also a devil drug, because to maintain that pain-free feeling, one has to keep the dose going to prevent a return of symptoms or increase over time. It’s really just a temporary band-aid fix and, unfortunately, if one adheres to infectious theory, is probably just slowing progress on antibiotic therapy. 😥

Adding azithromycin to your protocol was probably a good thing – more coverage for potential offenders, very compatible with mino and is a nice broad spectrum antbiotic. If strep is in the mix, will help to lower that titer. Thing is, even two months in, it’s still possible to be experiencing herxing and a new antibiotic can sometimes help reveal an underlying coinfection that hadn’t been addressed before…i.e. if one is herxing a lot, then it’s probably hitting something big. When I first started zith, I could only tolerate 1 250mg tab every 10 days. I was then able to increase the dose to once a week and then to Tues and Thurs (once a day and then twice a day). After doing some more in the way of heavy Lyme protocols, I was finally able to go back on zith in much higher daily doses (250mg BID) and felt really well on this dose (except for herxing, as I started doing long pulsing).

What is kind of ironic is that docs tend to forget that folk can be re-infected with Lyme or infected later – that is to say, one bite earlier on doesn’t give a person immunity and we can become re-infected. I have been bitten a few times since I started antibiotic therapy, fortunately seeing the tick. Some people don’t see anything – tick or rash, but this doesn’t mean exclude the possibility. Each tick bite can increase the pathogen load, adding more infections to the mix, depending on what the tick was feeding on during its two-year life span and then passed along to its human host. Unfortunately, AP docs are generally not Lyme Literate (there are a few on our lists, but these are few and far between). As Brown mentions in the book, Lyme is a very different kettle of fish and requires higher doses of antibotics, often in very different combinations…otherwise, it’s just suppressing the bugs and then they come back for another round when their host is a bit run-down. A stiff neck is one of the more classic signs of Lyme and should be a good tip-off for anyone to get tested, just to check to see if there are any clues to it being Lyme….although really it’s a clinical diagnosis (based on living in an endemic area, past tick exposures – however long ago, signs/symptoms, labs, etc). I thought I was fine on my antibiotics when I got bitten again, thinking I had enough coverage…not necessarily so…my Lyme doc told me to inform him any time I had a tick bite, as he would change up my protocol immediately to knock any fresh infections out before they could go any deeper.

Another thought is that Brown would often add in an IV series when patients hit a patch of flaring on their road back. There is a story about this in the book…I’m trying to remember the gist of it from memory, but it was a lady who had done quite well and then went into a massive flare and her hubby had to carry her up a flight of stairs to see Brown ❓ …probably have my wires crossed on this, but I do recall that Brown advised IVs when a patient hit a flare in order to knock it out and give a boost to the therapy.

One last thought…seasonal flares…fall/spring flares are pretty common amongst rheumatics. You’re out in CA, so this may not be an issue for you, though. 😉

On the main site, there is a very helpful guide with things to check if one has hit a plateau or is currently not responding to treatment…there might be something in this list that rings bells for you, Starla…like a change in generic, or something simple like this.

http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

Hope something here helps and please let us know what you discover when you can – above all, hope you feel better soon!

[stwig]

Hi Maz,
I appreciate all your comments and especially your wisdom. I knew the M-Pred packs were just a band-aid, but when I could hardly get dressed or open a door, I had to do something just to keep on going to work. 35 years ago I lived in Colorado where ticks can be a problem, but even then I never got bitten by one. I have not been hiking, camping, or out in the woods for years and years, can’t even remember the last time I saw a tick. I have truly morphed into a city girl. Knowing that, I think it would have been hard for me to get Lyme, but I suppose anything is possible.

Seeing that you started with Azithromycin at 250mg once every 10 days makes me wonder if I am suffering from a huge herx on top of the flare…… a double whammy so to speak.

Thanks for the response. I will check out the link you suggest. Hopefully next time I post on this site it will be with good news of another road to recovery.
Thanks,
Starla

[frhorngal]

I take 100mg minocycline every other day alternating with 500mg Azithromycin and have been doing very well with this protocol for 6 months.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[stwig]

Hi Frhorgal,
Is the addition of the 500 mg of Azithromycin due to your additional diagnosis of Lyme?
Starla

[Author]

Posts