Need to hear from anyone having success who is not on Minocin!

[kathyo]

 If you are on other antibiotic combos that are working for you that do not include Minocin please let me know what combination of meds (anitbiotics) you are on, dosages and your diagnosis. I am looking for something that works since I believe I have developed a resistance to Minocin.

K

[DragonSlayer]

 

Hi, K:

I don't have RA, but if I did minocycline would not be my first drug of choice–it would be Cipro, the same drug I used in cycles for my AS.

It is only based upon my belief that Proteus mirabilis infection of the urinary tract plays a primary role in RA; it is only 'belief,' and I don't have any more evidence (empirical) than I had when I took antibiotics for AS.  It is the work of Professor Alan Ebringer at Kings College that proved the bacterial connection to AS and perhaps also RA, since he had to develop a method to differentiate between the two conditions in their early stages and indirectly found the P. mirabilis connection.

Also, I would follow Ebringer's suggestions to eliminate pro-inflammatory (arachidonic acid and precursors) foods until the RA is better controlled–these include red meat and eggs (yolks), and actually most high-protein foods like cheese and milk, also.

Taking plenty of cranberry or unsweetened concord grape juice:  8oz every 8 hours in addition to drinking plenty of water otherwise.

EFAs and EVOliveOil–take the olive oil by the tablespoonful at 10 minutes before each meal and even snacks–up to 10 per day and Borage seed oil (2g effective GLA) upon retiring.

Good luck to You,

John

 

 

 

 

 

[Maz]

Hi Kathy,

I remembered your thread of the other day, “Resistance to Minocin – any suggestions??” and noticed you hadn't replied, so wondered if you may have missed the responses, if you haven't visited here since then. You also mentioned Lyme as being implicated in your situation in that thread, so you might be interested to read my progress thread. You'll find the link in my response to you on this original discussion thread:

http://www.rbfbb.org/view_topic.php?id=716&forum_id=1&highlight=resistance+to+minocin

I've been on a number of antibiotic combos for Lyme/RA and did very well on tetracycline and biaxin (clarithromycin). You'll find the doses and other combos detailed on my personal progress thread. Too many to remember off hand! 😉

Susan who also has RA/Lyme has also been on a number of different antibiotics and may be able to elucidate you further on her doctor's approach or you could also do a search on posts with her name.

All the best in your searches.

Peace, Maz

 

[kathyo]

Was it “tetracycline” itself you were on and for how long? Or were you on one of the many forms of tetraclyine. I was just on Tetracycline now swtched to Vibromyacin (doxy). I'll check other replies too.

K

[Maz]

Kathy…I was on tetracycline (generic) for a year 750mg (bid). I had to recheck my own progress thread, as I was on so many combos/pulses last year that I tend to forget. Details are here:

http://www.rbfbb.org/view_topic.php?id=301&forum_id=3

Unless you were having an allergic reaction to mino (which might mean you're allergic to all the tetracyclines) or experiencing mino-induced Lupus-like symptoms (which can also arguably be herx-related), it would be really unusual to develop a true “resistance” to it in so short a time. Resistance to the tetracyclines is quite rare and usually only after many years, which is why some old timers trade it in for another tetracycline for a time before returning to it or add another antibiotic to the mix.

The way you described it in your post on the other thread, it sounded like you were herxing as you were ramping up the mino dose? So, this would be a fairly normal reaction and would just mean you might need to adjust your dosage down (with your doc's knowledge, of course). Herxing is a good sign it's hitting the bugs, but intolerable herxing increases the hypersensitivity reaction and isn't worth the higher dose, as I found out the hard way. In these instances, less is usually more to keep inflammation at bay to allow better penetrance of the antibiotic to the joint and other tissues.

Hope this helps some as I'm really just going by what you said before in your other thread. 😉

Peace, Maz

 

[kathyo]

Thanks Maz,

I had gotten through a 2-3 week herx when getting back on Mino, and over a period of days it began to work for shorter and shorter periods (I was taking under 100 mg and daily dosing up in small increments) and then I felt like I started crashing. It would not work after that and would not relieve any sysmptoms. I am sure it was not a herx.

Yes, people CAN build resistance to Minocin. I think that is where many people here on the Road Back are not yet informed… misinformed. It can and does happen. It can happen with other tetracyclines as well. I know it is infrequent hence why people think that it does not happen.

Maybe with pulsing Mino with an expereinced doc it does not happen. I was daily dosing at reduced levels, with an under-experienced doc, and building up slowly as I could tolerate. I should have gone through the herx on Cipro and not on something as strong as Minocin.

K

[Maz]

[user=517]kathyo[/user] wrote:

Yes, people CAN build resistance to Minocin. I think that is where many people here on the Road Back are not yet informed… misinformed. It can and does happen. It can happen with other tetracyclines as well. I know it is infrequent hence why people think that it does not happen.

Maybe with pulsing Mino with an expereinced doc it does not happen. I was daily dosing at reduced levels, with an under-experienced doc, and building up slowly as I could tolerate. I should have gone through the herx on Cipro and not on something as strong as Minocin.

Hi Kathy,

I'm really sorry to hear you had such a bad reaction to the minocin. Not pleasant, I'm sure. 

I'm very interested to know why you think, “many people here on the Road Back are not yet informed….misinformed.” I think we both said the same things….that resistance to tetracyclines is rare….your description being, “infrequent.” 

From “The New Arthritis Breakthrough,” page 260, under the section, “Tetracycline Does Not Give Rise to Immune Strains of Germs,” Dr Brown says:

“The prolonged use of most antibiotics can give eventual rise to immune strain of germ. Immunity is developed in a germ's outer surface, which is the area affected by penicillin and other antibiotics. Tetracycline is different from all other antibiotics in that critical respect: it affects the core of the germ, not the outer surface, and therefore no immune strain of germs ever develops as a result of its use. Moreover, people who use tetracycline over a period of months or years tend to avoid colds, pneumonia, and other diseases.”

Do you mean that you think that Dr Brown's explanation of how a bacteriostatic type of antibiotic works is wrong and that we have all been misinformed by the above?

Would you kindly explain what you mean further? I think it may be important for others here to be clear what you mean by “resistance.” Do you mean “intolerance” to tetracycline or do you mean that you developed immune strains of infection to it? If the latter was the case, I have to wonder if pulsing may have made any difference at all.

Also, your last comment is confusing me a bit….you said, “I should have gone through the herx on Cipro and not on something as strong as Minocin.” Can you clarify your reasoning for this? I ask, because, like you, I had a horrendous reaction to daily dosing as I ramped up my dose. When I lowered it to MWF pulsed dosing, I tolerated this dose very well and have continued to improve since. This illustrated to me that I wasn't “resistant” to minocin, but I did have a greater tissue hypersensitivity reaction to it.

I have a feeling it may just be the terminology we are using here that may be confusing this issue, not that we are necessarily saying different things. 😉 What do you think, Kathy?

Thanks.  

Peace, Maz  

 

[kathyo]

I have been given the impression that it has been widely assumed that it is “difficult to build a resistance” to Minocin. In my experience it does not take years and can happen in a month or less. It is not that difficult. That is where I feel there is indeed some degree of misinformation about Minocin and resistance in these forums. This is simply based on my personal (very difficult) experience over the past 11 months. Maybe my experience will help someone else down the road.

By resistance, I am not referring to intolerance, but to developing immune strains of the infections (mycoplasma, lyme, babsia, etc.) that simply do not respond to the Minocin any more.

Yes, I think pulsing the Mincoin with an experienced doc would have possibly prevented resistance from ocurring in my opinion.

I initially started on Cipro 3.5 years ago. I didn't even herx. It was very, very gentle. It didn't work forever so I had to try different abx and eventually found Minocin. Minocin is very effective and stronger against these infections. I probably could have tolerated a full strength Cipro dose while herxing, but not a full strength Mino dose.

I was kept on Mino for several months after I knew what had happened. My doc was not convinced but we each know our own bodies more than anyone else.

For me to fully explain in detail what happened to me I would have to write several pages or more in detail on how resistance occurs and what it looks like when its happening. One clue is that is works for shorter and shorter amounts of time … 12 hours … 8 hours… 6 hours…. 4 hours.. 2hours… over a period of days and it would within minutes make me feel better then I would start crashing and this was after the inital 2.5 – 3 week herx was mostly over.

Someone who has seen this resistance occur with various abx and patients is Garth Nicolson. http://www.immed.org

K

[lynnie_sydney]

Cathy – I am having a little difficulty in completely understanding exactly what you are saying re all this. For instance

[/color]

That sounds to me like an expectation that mino would give symptom relief. That is NOT the case – symptom relief needs to be addressed separately.  Assuming that you believe in the infection connection, mino (or any of the other abx now being used) is used to target the infection itself -and progress has been described as glacially slow. It would be difficult to believe that anything could be happening in a month – other than a herx.

When high daily doses are used, there is an argument that Mino's immunosuppressive properties kick in. Many SD patients find that they do well on a high daily dose and, interestingly, many have reported not having a herx in the same way as RA people tend to do.

Unless I am missing something here, I would consider that you most likely  showed signs of hyper-sensitivity, rather than resistance. There have been a few who have reported that even at 25mg and pulse doing, they were still herxing big time. 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)

[kathyo]

I had been improving signifantly after a rough 2.5 – 3 week initial herx and was getting notably better while building up the dose slowly. I was through the worst of the herxheimer and on my way into the clear. I only had fairly mild to moderate symptoms before getting back on Minocin. It was not like I was disabled. I utilized Garth Nicolson's treatment model which gets most people through a herx in 2 – 3 weeks (although this can vary). It was not a hypersensitivty reaction. It does not fit the whole picture of what I experienced. (i.e. the minocin working less and less over a period of days… what I would call cycling faster than normal until it would only work for a few hours, then an hour, then less even and then not at all. )

Resistance to the idea of resistance. Why? Maybe … just maybe Brown was not completely right here on this one point.

In my opinion, Brown's statement; “Tetracycline Does Not Give Rise to Immune Strains of Germs,” is simply wrong. I don't want to be the walking evidence but oh well.  It happens. I may be a rare bird our here but I know what happened. I don;t think it would have happened if I had increased the dosage level faster. Maybe this is good to bring to light although obviously it brings up some degree of controversy.

On a personal note, it has been a little hard when my docs and others have dismissed or try to come up with alternative explanations for what happened. I know everyone means well. I really wish one of the alternative explanations fit .. I really do. Imagine having gone through this… developing a resistance to the one med that had been working so well, you go off of it, try to get back on it, herx like the dickens, it completely stops working after a period of improvement and then people don't believe you. Then the frantic search for something else that works.  Sorry been through a challenging year to say the least.

Trusting God for His cure which I know is on the way.
http://www.freshfire.ca

K

[richie]

Hi

“Resistance ” –the word is being totally misused —-Bacteria builds up a resistance to a med over a period of time not one month —-It is virtually impossible to become   resistant to a med over a one month period —-hyper sensitive –or lack of tolerance seems to fit the description —

Richie

[whaleharbor]

Kathy,

I'm a newbie so you have to take what I say with a grain of salt but…

What you are saying is not so far fetched for me.  I was reading something on the Marshall Protocol website.  Where Dr. Marshall was talking about the importance of not taking less than 25mg as it would do more harm than good.  Check out this link on this very topic.  He also talks about changing the dosage up or down to continue seeiing benefits.

http://www.marshallprotocol.com/forum32/1166.html

In my experience, I spent a year taking 20mg per day with food of Doxy…prescribed by an inexperienced Doc.  It worked fantastically at first and then ceased working for me too (for a number of reasons).

I figured that my RA just was breaking through the dose and that I needed to get a real dosage of the most effective tetracycline ie minocin and I'm on my way again.

I just wonder if the opposite could work for you too.  I wonder if you could have your doc switch to Doxy and see how that goes and then perhaps switch back if the Doxy quits being efficacious.

I believe that some docs including I believe Dr Brown (please check me veterans of this protocol) actually purposely switch antibiotics regularly in order to continue to have the patient progress.   Am I correct?  Will someone more knowledgeable please check me.

So for me the Doxy quit working at about month 7…likely because of a fall that I took with subsequent joint injury…but whatever the point is…it quit making me feel better and now the Minocin even on a pulsed dose is beginning to pick up where I left off and helping again.

Good luck Kathy and do keep us posted on your antibiotic choices.

— whaleharbor

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[jjflash]

k,

i have ra. i develope incease liver enzymes on mino. i am now on doxycycline. i take 100mg mwf. sometimes i do 50mg extra if i don't feel right. i use alot of anti-inflammatoies, tumeric, vit-c, fish oil etc. hope this helps. i see dr. s in iowa by the way.

lou

[kathyo]

Hi Richie,

It was about a month give or take (probably a bit over a month) of under dosing daily (under 100 mg) and a resistance occurred. I have to very respectfully strongly disagee with you. Prior to this, I had been on 200 mg of Minocin for over 2 years and tolerated it just fine. Even just before it stopped working back in Sept, I had been having notable improvement and relief while the herxing was easing up. It was not a tolerance issue in my opinion.

K

[richie]

Hi

Perhaps 200 mg daily was the best dose for you —did your problems start when the dose was reduced or did the problems start at 200 mg daily ????????? –Reason I ask is that I take 200 mg daily for almost 10 years now  no issues and am in remission –however I feel dropping down off this dose even now can perhaps bring a relapse

Richie

[Author]

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