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Hi Kathyo,
After 1 yr, I developed the Lupus like symptoms from mino. My doctor switched me to doxy and I am still on it. I took the mino 100mg MWF and am doing the same with the doxy.
Dr tested and found multiple bacterias in me. First she went after the H. Pylori which cleared up in 30 days and my symptoms dropped to near zero. Then she ramped up H. P. meds to a level that is supposed to kill Babesia. Babs is a parasite in the red blood cells and Dr kept saying, “You will never get well until we get rid of the Babs”. At first I flared, but then I felt great. Seven months of this drug combo and I felt great throughout the 7 mths. But I kept testing positive for Babs. Finally, she stopped the antibiotics (except doxy) and gave me 4 weekly IVs of MTE9. MTE9 is an herbal concoction for Babesia. According to the doctor, the MTE9 would grab the babesia whole and remove it from my body intact so I would not experience any die off.
She was right. I felt great during the treatment and afterward received my first negative Babs test. Dr requires 2 negative tests before she will consider Babs gone. The bloodwork has been drawn for the 2nd test and I will know the results upon my next visit.
A long story (too long for here) but some added physical stress came into my life that caused a flare. Dr convinced me to go on Enbrel. The very first shot knocked out the flare and I am doing very well (3 shots so far). I didn't want the biologics, but the doctor insisted we need to protect the joints while going after the bugs. I can't get out of the stress situation yet, hopefully soon. So I agreed to the Enbrel and I am simply going to think very positive thoughts about it. I am eating extremely nutritiously which is supporting my organs against any damage by the drugs.
So, to summarize….I am currently on doxy 100mg MWF and Enbrel. Dr has me on an intensive herbal program for detoxing and I am sweating like a man. This was her goal to take stress off my liver and kidneys. For the first two years of my illness, I could not sweat at all. In my healthy life I was a good sweater. So, now that I am sweating again, I have hope that I am slowly returning to normal. Plus detoxing, of course.
I'm feeling great inspite of a crazy schedule.
Mino may not be the right drug for you. Are you working with a good AP doctor?
Susan
Yes, I was under 100 mg while going through the intial herx. 200 mg was too strong to start with. I was building it up 5 mg at a time starting at around 50 mg daily and in my opinion went too slow. Had I never gone off the Minocin last summer I would probably still be on it and fine. When I went off of it I started getting little tummy aches here and there that over several months worsened. I thought they were related to a need for more pro-bioitics. I was wrong. Turns out that Lyme, Babsia, possibly HHV-6 (?) were present along with the mycoplasma hominis. Who knew! Turns out that Minocin really does a good jod at suppressing Lyme and co-infections.
K
Did they test you for Helicobacter Pylori? That is a bacteria in the gut that causes ulcers. It can exacerbate RA symptoms.
http://www.endfatigue.com/tools-support/Article_antibiotics_rheumatoid_arthritis.html
[user=517]kathyo[/user] wrote:
Turns out that Minocin really does a good jod at suppressing Lyme and co-infections.
Hi Kathy,
If, as you said before, Minocin had caused you to be “resistant” to your bugs (i.e. had no effect on them and caused your condition to worsen), then how could it have done a good job at “suppressing” them, as you have commented above? Surely, if the bugs were resistant, minocin would have no effect either in suppressing or in killing them.
Kathy, my intent is not to make you wrong, because as a fellow patient, I don't make any claims to have all the answers. It's already understood that you've had a challenging time – we all have or we wouldn't have sought out the support of this site. In spite of our health challenges, however, the “mavericks” who manage to somehow find the strength to be their own health advocate, in spite of the debilitating pain, come here with the purpose and resolve to learn more about Dr Brown's antibiotic protocol. In a previous statement, however, you clearly stated that you felt Dr Brown's rationale for using the tetracyclines was “wrong.” While this board and the patients who frequent here are no strangers to controversy and we discuss controversial subjects all the time, I'm just not very clear how this board can truly have any supportive function in your case, as you don't believe it can help you.
Perhaps I am misinterpreting your reason for seeking out this board, but it concerns me that some of your comments could be quite misleading to new members who are very unwell and seeking hope and help for a protocol that resonates deeply for them, but that you feel doesn't for you.
If I am misinterpreting your intent, I deeply apologise, but it would help us to know the ways in which you feel this board could be of any service to you.
Peace, Maz
Hi,
Yes, I am totally for MP and it obviously works so well for so many. One piece of info I had been seeking is if there are any others not using Minocin or other tetracyclines who are having success and what meds they might be using. I have gotten some very good leads from others here on this board over the past few weeks.
Minocin had been working very, very well for me for over two years and had done a great job at suppressing the various infections, etc. until I stopped and tried to restart, severely herxed unexpectantly and raised the Minocin dosage too slowly and the saga of resistance began. I wish I had a different story to tell.
I think that Brown's overall rational for using tetracyclines is right on. He obviously has a life saving protocal that helps so many. I have simply through personal experience found that Minocin resistance can develop which may contradict his one of the points he makes. The point I disagree with is small. I think utilizing an experienced AP doc probably avoids the risk of resistance developing.
Hopefully this clarifies my viewpoint, my history and my need. I had found so much help here 2+ years ago and got my life back. Now I have found myself in a puzzling and unique situation and am seeking leads on alternative medications, supplements, testing and any other viable treatment leads. The info I have gotten from RB members over the past several weeks (both on the board and privately) could prove very useful to me. I won't know until I try it. There is an interesting variation of treatments being used by the different members here.
K
Kathy – this is the RoadBack Board – which supports Antibiotic Protocol patients (or those looking to find out about it). Whilst some of our good friends here are on Marshall Protocol (MP), it is different in its approach to treatment and to recommendations. As it is MP that you mentioned, you may be better seeking answers on the marshall protocol discussion board. 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)[user=517]kathyo[/user] wrote:
Yes, I am totally for MP and it obviously works so well for so many.
Kathy, thank you for your reply. I do feel it is very important to make the distinction that antibiotic “resistance” and “suppression” are two very different things. This could be very confusing for anyone who is just beginning and learning about AP.
Did you mean MP or AP above? While the Marshall Protocol (MP) does come up for discussion here on occasion, as members decide what may suit their particular road back, the Road Back Foundation has no ties to MP other than that it is a recent derivative of Dr Brown's infectious theory. For further information on this protocol, you may find the MP website to be of better value to you in this regard.
Utilizing an experienced AP doc is a very good suggestion. However, many experienced AP docs who employ Dr Brown's protocol do use the method of gradually increasing the dose, which you are contesting, and so this could also be very confusing to a new patient. The majority of people do find this method works very well. In this context, I'd have to disagree that the point with which you disagree is “small,” because the use of the tetracycline family of antiotics to prevent resistance is actually one of the underpinnings of Dr Brown's use of AP for rheumatoid disease.
As you say, there are some interesting variations in the protocols used here, which is also in line with how Dr Brown treated on a patient-to-patient basis. Case histories, taken from his notes, illustrate that he often used different combinations, doses and dosing schedules, carefully evaluating each patient and their hypersensitivity response in his determinations in order to avoid excessive herxing.
It's good to hear you've managed to glean some useful insight from this board in your quest. Please bear in mind, however, that there are no doctors here and the information shared by both fellow patients and volunteers should not be taken as medical advice.
As you feel you are a unique case, your best bet is follow your own good insight to find a physician conversant in AP who meets your specific needs and who can monitor your case appropriately. Some patients do find it more challenging after enjoying a period of remission to recommence antibiotic therapy. With your added complication of Lyme's Disease and coinfections, consulting with a well-respected Lyme Literate physician, if you haven't already, may also not be a bad idea. Chronic Lyme is a very complicated disease where relapse is not infrequent.
Peace, Maz
Don't mean to confuse anyone or scare anyone either. I understand clearly the difference btw suppression and resistance. I am not confusing the two at all.
Seems like I have hit a sensitive issue with my story of “resistance” occuring with Minocin. I certainly did not intend at all to still up any controversy, simply to seek out some much needed suggestions/alternatives after a scarey situation. But none the less… it's simply what happened to me. I can't change my story or I'd be lying.
Yes, I have been seeing a Lyme literate doc (several this past year). My doc is also very experienced with mycoplasma infections. 20+ years of experience in both areas. This was like finding a needle in a haystack. Got the referral here from RBF to my doc. But even a good doc doesn't have all the answers all the time.
I understand that Minocin / tetracyclines are great at working for a long time. I agree. I am not in disagreement with that at all. Yes, they hold up well what what I have heard and read.
I am not “contesting” gradually increasing the dose if it is done with an experienced AP doc. This is obviously done successfully in many cases. My situation may have been different and my doc (PCP) was not an expert. I don't know if it was the daily dosing or what that led to the resistance. There are days I pray it would work again.
Feeling a bit hesistant to continue posting about this topic. It seems like it's hard for others to believe this has or can happen. I am not the controversial type. I just want to feel better, be out of bed and get back to normal and be able to take care of my daughter.
Well, off to think about the next steps.
Best,
K[user=517]kathyo[/user] wrote:
I certainly did not intend at all to still up any controversy, simply to seek out some much needed suggestions/alternatives after a scarey situation.
Kathy, I am in full agreement that engaging in this thread any further will be fruitless and too energy consuming. However, when prefacing a discussion topic with assertions that the members here are “not yet informed… misinformed” or that Dr Brown was “wrong,” is pretty much like throwing down the guantlet and, you must have realized, bound to stir up controversy. Of course you are scared and you will find plenty of compassion for this here. We've all been there and many still are, but using intimidation tactics won't help your cause and is rarely, if ever, productive.
I'd respectfully suggest, therefore, as you wish to avoid further controversy, that you select your wordings carefully, mindful of the fact that the various interpretations you have made of your personal situation could be unnecessarily troubling and confusing for newcomers reading these.
This is a website and discussion board dedicated to preserving the legacy and life work of a physician who had unprecedented success in bringing innumerable rheumatoid patients into remission with his antibiotic protocols. While it's accepted that there will be individual cases where treatment challenges can and do sometimes occur, it really doesn't serve any purpose to criticize the people on this board who offer their time freely to support others, while also condemning the central tenets of this protocol.
Be well.
Peace, Maz
Maz,
I was hoping I would not have to reply again to this post but I have found I need to.
Intimadation tactic?? – I am quite puzzled as to where this is coming from. Maybe you thought that when I said “board” that I meant “board members.”” I was referring to the overall forum or bulletin board. Maybe you have read something in between the lines of my posts that was not intended. Intimidation is not my heart at all and I don't think I have an intimidating bone in me. Sharing a different viewpoint or even disagreeing on a matter is certainly not an “intimidation tactic.” If I said something that was confusing please forgive me, but publicly accusing me of “intimidation”…. for disagreeing on some points … yikes… :crying:.
It has been my experience that there are things to yet be found out about tetracyclines and how they work. There is still some degree of “the unknown” regarding resistance and recognizing it, even among seasoned doctors and researchers. Assuming Tetracycline resistance is very unlikely or reinterpreting it when it actually does happen, does not help others who may run into this situation.
This is not a loose “interpretation,” nor a carelessly drawn conclusion on my part, although everyone is entitled to their opinion. The Minocin worked, then it stopped working. And I even continued on it for some time after this event happened at my docs request. It's pretty cut and dry.
I truly had no idea that my experience and opinions on tetracycline resistance might “condemn the central tenets of this protocol.” I am not as well versed in AP as many of you are as I was primarily utilizing the protocal at http://www.immed.org . I probably should not have crossed integrated both protocals, but cold not tolerate a full dose. I had previously assumed that resistance to Minocin was unlikely because of the some of the views shared here and hence I built up the Minocin slowly in part “assuming” that Tetracline resistance was rare if ever. Why this happened to me and not others, I don't know for sure, except that I was not pulsing but gradually increasing the Minocin daily with a doctor with limited experience. There were also co-infections that I was unaware of, but I don't think the co-infections were the primary issue.
Although I'm just an occasional visitor here, there should be room to share experiences, to kindly disagree, to try to fit new info into the puzzle even if it doesn't make sense right away or conflicts with certain lines of thought. I still feel that there is a degree of misinformation about Minocin and resistance out there at large. This in no way meant to condemn Brown's views, nor “criticize” any of the helpful volunteers. Simply, resistance can occur in the early stages of use if it is not handled properly. Again this is simply my personal experience that could possibly help someone else down the road to avoid this situation. Again working with an experienced AP doc is probably the way to avoid such a mess.
A thought: How will it be handled if another person comes to this bulletin board forum with a similar or same situation, when they really need help and their experience doesn't fit within the interpretive box?
Thanks to everyone who shared such interesting treatment ideas and different abx options with me.
Signing off,
KHi Kathy,
“A thought: How will it be handled if another person comes to this bulletin board forum with a similar or same situation, when they really need help and their experience doesn't fit within the interpretive box?”
Kathy, no one here claims to have all the answers and we don't dispense medical advice on this bulletin board. All we can do is offer the mirror of our own experience as it relates to Dr Brown's antibiotic protocol (AP). RBF volunteers are not doctors and we cannot make anyone well. We, volunteers and bulletin board members, are all here because we have read the information on the main website and/or Scammell books, these resources resonated with us, and we have chosen to follow Dr Brown's protocol. If someone arrives and they find that this model doesn't fit their interpretive box, the person usually moves on. People who are very unwell, presumably don't have the time or energy to invest in something that they feel won't work for them and they regard as wrong or misinformed.
“I am not as well versed in AP as many of you are as I was primarily utilizing the protocal at http://www.immed.org . I probably should not have crossed integrated both protocals, but cold not tolerate a full dose.”
Kathy, my understanding of this is that this could be more what is at issue here. It's not uncommon for people who are afraid and sick to seek out answers from many different sources, as your posts have reflected. In the case of the various antibiotic protocols out there….Prof. Nicholson's, Marshall Protocol, Stratton/Wheldon Protocol, Wyburn-Mason/Blount, AP and the innumerable Lyme Protocols available (allopathic, naturopathic, integrative, complementary and all the shades between),…it is very easy to be tempted to pick and choose eclectically what we perceive suits us and cross-mix antibiotic regimens. However, each protocol is based on very different rationales and cross-mixing them, winging it alone, will inevitably lead to a minefield of confusion when things do not turn out as hoped. As a patient, myself, my own personal recommendation to anyone starting out would be to do the research and check out all the protocols, but to settle on one that resonates most with you, find a physician to help with that protocol and stick with it for a good length of time. This is because there is currently no overnight fix with rheumatoid disease. If you now wish to make a return to and follow Dr Brown's antibiotic protocol, my suggestion would be to re-read “The New Arthritis Breakthrough” from cover to cover to become fully reacquainted with the rationale behind its use. I have read the information many times over to gain new levels of understanding, as my own personal experience of AP has evolved. This is constantly reiterated to all newcomers and actually recommended on the bulletin board welcome page:
http://roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/3.html
“I truly had no idea that my experience and opinions on tetracycline resistance might “condemn the central tenets of this protocol.”
Kathy, please let me reiterate. No one here is a stranger to controversy. Rheumatoid patients face this every day and come to this board looking for support where none has been found elsewhere. RBF volunteers and AP patients alike have heard every story in the book and seen about every permutation of every excuse given by their physicians, conflicting literature, relatives and friends as to why tetracycline use is “dangerous,” “can cause resistance,” “won't work,” “will just make you sicker,” etc, etc, etc. It's heartrending the number of patients arrive here every day, with dire diagnoses, who have only been getting sicker and sicker on the usual toxic medicines doled out. This has been a place of hope and sanctuary for thousands of chronically ill folk over the years and many of the AP 'old timers' still frequent the discussion board to selflessly share their success and stories of hope with those just starting out. So, you can imagine how it is when a new poster pops their head in the door making confusing, derrogatory comments that could very frighten and concern many others who are just starting out. Your case is clearly unique, because you haven't been following Dr Brown's protocol more recently and have been doing something different, which has led to your current challenges. As such, I've been scratching my head and wondering why you'd even be remotely interested in being here, if you feel that this very experienced physician, to which this site and volunteers are wholly dedicated, was wrong and that the people here have been misinformed by Dr Brown when countless numbers of folk have only become well again by following his guidelines for treatment. Yes, people do face challenges on AP every day. It's not an easy road and takes much patience, courage and tenacity to stick with it, but it's turned countless lives around that may otherwise have been considered “lost causes” to the wider medical community. This site remains strong and still valid today largely because of the countless success stories, but also by virtue of the fact that this therapy offers renewed hope and suppport.
So, please understand, the comments like the ones you've made regarding resistance to the tetracyclines is not at all new to the well-seasoned ears here and these things have been discussed and volleyed back and forth many times over in the past in both heated and humorous exchanges. It's all been heard before. However, your particular comments were 'perceived' as inflammatory and unjustified, considering that you were not seeing a qualified AP physician and have not strictly been following this particular protocol, rather devising your own, which has led you to face some serious challenges.
If you would like to remain here on the bulletin board, then you are most welcome to remain, learn more about the protocol and to contribute, but please be mindful of how your comments, based upon your unique experience, may affect others who are also seeking and afraid.
Peace, Maz
All,
A comment in another thread alerted us moderators that this thread had been closed. That was never any of the moderator's intent. I have inadvertantly done this a couple times since we implemented this new board.
If it is ever necessary to close a thread, we will post as such and our reasoning for the action. If you see a thread closed and there is no comment as to why, please assume that it is an error and let one of us know.
Thanks!
Cheryl and the other RBF BB Moderators
The topic ‘ Need to hear from anyone having success who is not on Minocin!’ is closed to new replies.