Newbie doesn’t know what to think

[amutch]

Hello everyone,

This is my first post here although I

[Cheryl F]

Ashley:

Welcome to the RBF Patient discussion forum. I understand the confusion that you are feeling, most of us here do unfortunately. AP therapy was proven safe and effective by the MIRA Trial (Minocycline in rheumatoid arthritis) a multi center, double blinded clinical trial funded by the NIH and Road Back. That was 15 years or so ago, and it is true that this treatment has never been “in favor” by the vast majority of rheumatologists, it is not really true that it has “fallen out of favor.” The doctors who favor this treatment still favor this treatment, the doctors that never did favor this treatment still don’t.

Many people who end up choosing antibiotic therapy (AP) for their treatment have to decide to “swim upstream” so to speak, it is not always easy. I am the mother of a systemic scleroderma patient. When we asked the rheumatologist that diagnosed her about AP, he told us, “it [AP} is a hoax and he would have nothing to do with it!” So, I considered the options, there really aren’t any options for scleroderma, and I choose AP and we went were we needed to go to find an experienced AP doctor. It is really just a personal choice. There are lots of people here who have made that choice and can give you assurance that they are glad they made that choice, but ultimately, you have to make the decision. My daughter was told, based upon rapidly advancing lung involvment, that she had about 2 years to live. That was 5 1/2 years ago. She has been in full remission for about 5 years. She is doing very well now, she is athletically very active and fit and she is enrolled in an extreamly challenging academic program.

Good luck in your decision, we are glad you found us!

Cheryl

[crowchez]

Ashley,

AP is definitely a current, successful treatment option. Nothing outdated about it & in fact there’s more & more research being done all the time on infectious causes of rheumatic disease. The Road Back newsletter highlights these studies & I believe they post them in the education section of this site. You just need to find a doctor that will work with you.

FWIW, my AP rheumie told me the last time I saw him (a few weeks ago) that they used to think methotrexate was “perfectly safe”. But now they’re finding it causes liver cancer. 😯 I had another rhuemie (prior to starting AP) exclaim when I asked him if he would put me on metho – “why would I put you on that?”. The stories about it scared me too so I’m delighted that doxy/mino/diet have worked so well for me.

Good luck & hang in there!

Deirdre

[Maz]

@amutch wrote:

I guess I just need some reassurance that AP is a current treatment option, not just an idea from years ago that some people are clinging to. Reading your forums has helped, but I just need some moral support while I look for a Doctor/Specialist who will help. I am in Sydney, Australia if anyone has a Doc they can recommend. I am going to contact those on the list I have been supplied by RBF, but a word of mouth recommendation is always appreciated.

Hi Ashley,

Just adding a warm welcome to Cheryl’s and Deirdre’s above! 🙂 Glad you found us, but sorry you had to get RA and had to seek us out.

Lynnie, our Aussie volunteer, maintains the physician lists and sounds like you’ve already received the lists from her. I believe many travel to see the two docs that Lynnie sees who work in partnership with one another and these two seem to be great options according to those who see them, because they help to individualize the protocol to the patient and are also able to recommend supportive adjuncts, also tailored to patient needs. Some folk down under will find a local doc who is open to helping them and then they can get started that way. There are physician packets on the main website under the Education tab you can print out for this purpose, if needed.

As Deidre mentioned, the past eBulletin newsletters that RBF publishes on a quarterly basis include lots of studies and current research tying infectious causes to rheumatic diseases and also include Remission Corner stories and special articles from physicians and other medical providers on AP and supports. You can access these past newsletters at the following link:

viewtopic.php?f=1&t=6304&p=55744&hilit=ebulletins#p55744

In fact, Dr. T. wrote an article for the last eBulletin…he was a co-author of MIRA (minocycline in RA trials) that Cheryl mentioned above that you could also print for your rheumy, as he is a rheumatologist at Harvard and should bear some weight if you decided to re-present your case to your rheumy or another doc to just get started. I believe that in Aus, minocycline is called “minomycin.” Doing it this way, however, you may need to navigate your own way until you could get to a more experienced AP doc, because the standard dose prescribed by rheumies is 100mg twice a day and this is usually way too much for hypersensitive RAers. Here is also a link to the American College of Rheumatology website, stating the minocycline is an approved ACR DMARD.

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

The term “current treatment” is kind of a misnomer, because if you get a chance to read the Henry Scammell book, The New Arthritis Breakthrough, which outlines the history of tetracycline use for RA and other rheumatic diseases, it actually is a treatment that goes back to the 1930s and was used quite successfully. As described in the book, rheumatic diseases were actually believed originally to be infectious in origin, but with the advent of prednisone, treatments took a 180 degree turn, as this drug was then thought of as a miracle drug and led investigators at that time to look at RA more as a metabolic disorder, rather than an infectious disease. Of course, prednisone wasn’t the miracle that was hoped and ultimately caused those who were taking it to have monstrous side-effects…cataracts, loss of adrenal function, osteoporosis, overwhelming infections, diabetes, moon face, poor wound healing and skin thinning, etc.etc.etc. In fact, when they tried to get patients off this devil drug, the patients relapsed and were worse than before. Fortunately, this drug is used a lot more sparingly these days. However, since this time, a new course seemed to be set in the field of rheumatology and all the drugs developed for rheumatic diseases were focused on interfering with immune function to quell inflammation and to mask disease symptoms. While some of the newer drugs used today aren’t as dangerous and toxic as earlier ones (like gold shots and prednisone), the goal of drug manufacturers seems to remain the same…to find ways to modulate or ameliorate immune function and the focus on infectious causes has been grossly diverted as a result. Maybe it’s a good thing, as not everyone is in a position to wait for AP to work. It is a long-term therapy and requires some investment of time to understand the rationale for why it is used and why it is not an overnight fix. Less severe disease is often reversed very quickly on AP, but some folk may be looking at 2 to 5 years for stable remission to be reached and it can take some tweaking along the way. This is where the experience of a good AP doc can make a real difference. If you just want to get started, however, finding a doc who will support your treatment choice to begin with low dose minomycin and will monitor you as you get going is a good way to begin. 🙂

Hopefully, some of the Aussie posters will chime in to share who they are seeing to help you in your decision-making process on which doc to see. We’ll all be here to support you as you go, Ashley, and remaining as engaged as you can on the forum should provide you with a lot of helpful info as you get going on the therapy. Don’t forget to find a good probiotic supplement, as this will be one of the staple supplements you will need to protect your gut health while on the therapy. These are usually taken a good two hours apart from abx doses to replenish good bacteria in the gut.

[NancyB]

@amutch wrote:

For a couple of years I had mainly muscle problems and a neurologist couldn

[Lisabuf]

Ashley,
Welcome! I’m pretty new here, too. I can so relate to your post because I felt (and somewhat still feel) the same way. The information can be confusing, and there is no magic bullet to cure this so it’s understandable that there are differences of opinion over the best treatment for it.
My rheum also suggested Methotrexate after a few months of Plaq gave me severe stomach cramps. I declined because of all the horrible things I had read and heard about it. I ended up stopping Plaquenil until the symptoms subsided and then cut my pills in half to reduce the dose–which I seem to tolerate fine but at this dose the disease is still progressing. My rheum was OK with me trying Minocin after I rejected Mthtrxate, although she is prescribing it as a DMARD and does not believe there is bacterial/micoplasmic component to the disease. I desperately want AP to be the answer and I’m determined to give it at least 6months to see if it improves. As of now, I still see some disease progression and almost every day deal with the fatigue that comes with it; but I have some good days and feel more energy at times. It’s easy to become very discouraged on a bad day.
Diet modification is another area for you to explore, although I’ll warn you it can lead to even more confusion! I am just beginning to explore the process of modifying what I eat to control the RA. Members of this forum have been so helpful (THANKS KRYS!) to share their knowledge and personal experience with diet. When you feel up to it, do some research on diet and eliminating triggers.
This is a roller-coaster ride but you’re not alone. Best of luck!
Lisa

[lynnie_sydney]

Ashley – I believe that you first wrote requesting a listing of AP rheumies and that I explained, when I sent you the Australian list, that most AP docs are not rheumies and that it WILL take some time and patience to find someone with whom to work. I know that this seems very confusing, though the Scammell book – which you say you’ve read – gives a really good explanation as to the role that rheumies generally play and why they generally dont subscribe to AP. They treat symptoms because their medical paradigm is that rheumatoid diseases are idiopathic (of no known cause) and that the body’s immune system attacks itself for no apparent reason. Dr Brown’s approach was that rheumatoid disease has an infectious origin and that treatment should be tailored to attack and clear the underlying infection. Very different and quite a new paradigm (even though Brown’s original work dates back to the late 1930’s!!!!). In many ways, this paradigm has lots in common with Barry Marshall’s – whose discovery that stomach ulcers are caused by bacterial infection (H.pylori) not stress and lifestyle. This was utterly rejected by mainstream medicine until he proved it by swallowing some of the bacteria and giving himself an ulcer! Even now, (in spite of his winning a Nobel Prize) there are some conventional docs who still subscribe to the stress/lifestyle theory! The conventional medical juggernaut takes a very, very long time to change.

In terms of Nancy’s pointing you towards Lyme, well that will be an even bigger thing to look for in Australia – conventional wisdom says that it doesnt exist here (the only continent on earth in that case, where it doesnt!). If you want to at least have a look at this possibility, a good place to start is the Karl McManus Foundation set up in his name by his widow (Karl had a neurological manifestation of Lyme) http://www.karlmcmanusfoundation.org.au and the aussielyme group (you can find them on yahoo groups.

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)

[Michele]

Hi Ashley,

It sounds like you have already started doing a lot of research. Your post made me remember that when I was first put on prednisone for my initial diagnosis of RA I felt horrible and lost a lot of weight, too. It took a long journey for me to confirm Lyme / Babesia, but that is what I am treating and continuing to feel better! It was actually my negative reaction to prednisone that made me question my doctor’s decisions and I began researching on the internet and found the Road Back!

Michele

[amutch]

Thank you all for your inputs and encouragement.

I did ask my Rheumy if I had been tested for Lyme, and she is one of those that believe that it does not exist in Aus. I am pursuing this however, as I have only lived in Aus for 7 years, and have lived in Europe and South Africa before this. My symptoms have come on very slowly, over many years, so it’s highly possible that this could be a cause. I’m seeing the Neurologist on Friday, and she is incredibly helpful. She tried for so long to find the problem, so maybe she has tested for Lyme already, although I doubt it as she would have done something about it. Hopefully she will be able to test for Lyme – I’ll keep you all posted.

Thanks again – plenty more reading and research to be done yet……

[lynnie_sydney]

as I have only lived in Aus for 7 years, and have lived in Europe and South Africa before this. My symptoms have come on very slowly, over many years, so it’s highly possible that this could be a cause.

With the South African component, you may also want to consider Rickettsia in the mix. It would probably be useful for you to look at the posts of Frances – forum name fkendall who is a forum member based in Johannesburg. She also has a personal history thread in that section. And you might want to take a look at this recent thread:
viewtopic.php?f=1&t=6320&p=56020&hilit=rickettsia#p56020

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)

[NancyB]

Glad that you feel you have one doc who may be helpful, that’s a start! The Australian site that Lynnie mentioned should have good information. Another one that you may want to look at and perhaps copy some info to take with you to your appt. on Friday, is the International Lyme and Associated Diseases (ILADS). The neuro may be more open when she sees that there is an international organization of committed physicians that diverges from the mainstream views about Lyme.

http://ilads.org/lyme_disease/about_lyme1.html

The key may be whether she’s willing to treat based on clinical symptoms, rather than counting on frequently unreliable tests.

Best of luck…hope you feel better!

[amutch]

Thanks Lynnie – Will look into that too -it’s all a bit overwhelming at the moment with all the possibilities to consider.

@Maz wrote:

Lynnie, our Aussie volunteer, maintains the physician lists and sounds like you’ve already received the lists from her. I believe many travel to see the two docs that Lynnie sees who work in partnership with one another and these two seem to be great options according to those who see them, because they help to individualize the protocol to the patient and are also able to recommend supportive adjuncts, also tailored to patient needs.

Are you able to tell me which Doctors on the list you sent are the 2 that are helping you, per Maz’s quote above? Given that you are Sydney based, they must be at least accessible from Sydney, so I’m hoping to get in touch with them too.

Kind regards,
Ashley

[lynnie_sydney]

Ashley – that info was in the covering email I sent you. I have re-sent in case you dont have it.

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)

[claireh]

hi,
welcome to the road back. Well all i can say is AP definately does work and if your rheumy is supportive and wants to stay in the loop ask your gp if he will give you the antibiotic. In my experience GP’s usually are more willing to try it out. I am personally not a fan of methatrexate i haven’t met a person yet who has RA or scleroderma who has benefitted long term from the conventional drugs> thats not to say they don’t exsist i just have not met one.

only you can make the decision but it is a harmless treatment given to millions of teenagers for the treatment of acne!!! my view was always give it a chance and just see what happened so i did and it is working a treat. not only am i feeling well and my disease has slowed right down i am seeing reversal of damage now too.

good luck keep strong.
take that leap of faith.
clairexxx

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