If Not Us, Then Who?

[laurawm]

Hi friends,

I am wanting input and opinions on the best, most sensitive, and tactful avenues to approach other individuals with RA who are not doing well on conventional treatments about ABX TX? The only other online RA blog/forum I read regularly is RA Warrior written by a fellow RA sufferer who is using standard treatments and suffering desperately. Her blog is extremely successful and reaches thousands of fellow rheumatic patients – she has started a foundation for RA patients and regularly travels to ACR meetings as a speaker. Her general view of ABX treatment is negative and is rarely mentioned on her blog as documented here: http://rawarrior.com/antibiotics-as-rheumatoid-arthritis-therapy/ (yes, I have a comment recorded from last spring before I got sidetracked over the summer and had to start all over in Sept.)

There is a Bible verse that says, “Whoever has ears to hear, let them hear.” (Mark 4:9) I think of this parable daily, as it is unrealistic to think that even if everyone read Scammel’s book with all the evidence laid before them, that they would be convinced and ready to try ABX, yet if people do not even have exposure to the treatment and evidence, there is no chance. Of course, the RB foundation is an incredible, amazing resource and tool, but it feels like people have to either chance upon it online in a search for alternate therapies, or by scarce word of mouth either online or in person. I feel like there is more that we could do as active compassionate members of this online community. Judgment and prosthlytizing never produces good results, but empathetic personal testimonies, such as documented in “The New Arthritis Breakthrough” can help even the most hopeless believe there could something more than what their rheumatologist has offered in treatment and prognosis.

I imagine we’ve all had some similar thoughts – I just know that the more we vocalize it, the more we can encourage and help each other reach out sensitively to others. Change begins when one person does something different to interrupt the status quo. Systems function the same only as long as all participants play their roles as have always been played. It takes us to further the influence of the RB foundation outside the confines of the forum. What do you all think are the best, most practical, and caring ways to do this?

As a concrete example, what could I do to reach out sensitively to a blog writer such as mentioned above? Write a personal e-mail? Send a copy of Scammell’s book? Encourage us all to lovingly write our experiences with ABX in comments on blogs such as hers? I sincerely want your thoughts.

Thanks all,
Laura

[Suzanne]

My opinion is that she isn’t interested in anything outside of pharma because her blog is her business and alternative is bad for business.

She discounts AP studies, yet tried Rituxan and she is seroneg. Check those studies out. And got it in some trial without having a doctor. That series of posts contained some of the most concerning things I’ve ever seen posted anywhere.

She testified at an FDA hearing for the new Pfizer drug as a rheum patient, yet according to her posts she is not under the care of a rheumatologist. Who sent her up there? In her testimony, she mentions her son, yet from her posts she has never had him evaluated by a ped rheum. What is she waiting for? Oh yes, she felt he needed to be tested on some type of ultrasound equipment that would require long distance travel….and ta-da, there was the manufacturer’s rep, commenting on her blog. I posted a study that showed the ultrasound was no better for JRA than exam, so if it were my child, I’d start with that. You can still travel if you don’t like the answer, but why are you assuming a ped rheum won’t find anything if your child has pain and swelling? It makes no sense. When I have tried to ask for clarification on anything, it is ignored or else the reply is, ‘if you don’t like this blog why do you read it’. Like I always say, no answer gives you your answer.

Yes, she has some good posts at times, but she will never take that blog off the mainstream….even if she herself isn’t in the mainstream as far having a rheumatologist and the rest of the trappings that would seem to go along with RA. Perhaps she has one now. It became too frustrating to read, but I do think her community has some good comments that I check out occasionally. They give some balance.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Krys]

Laura, you are very sweet to be thinking of others and trying to spread the word.

There were a few RBF members in the past, mostly I think people with SD, who tried to open up AP for other rheumatic patients on other forums. They kept being devastated with hostile reactions and sometimes downright attacks on them. Their efforts did some good, though. Some single readers decided to find out more about AP. I don’t know / don’t remember if they actually started AP.
My take is that it takes energy to spread the word. If you keep doing it and there are some positive results, there’s some positive outcome for you, too. Your heart rejoices. You are helping others and the joy that comes out of that compensates for the effort and time.
But if the response is all negative, you are using the energy that your body needs for healing to bang your head against the wall. You get dispirited, disheartened, hurt, depressed and eventually really depleted of already diminished energy your own body is capable of creating (your own rheumatic disease takes its toll on your own energy level all the time).

I admire the wonderful impulse and generosity of your heart.
I know, for myself, that my efforts to help those who were not ready to receive the help, was just wasted time, wasted energy and sometimes deep heartache for me. Did it take away from own healing? You bet it did!!!

Even here, on RBF, people who reached for additional help via PMs, often seek to hear what they want to hear. You may spend hours explaining, they don’t use any of the help they asked for, never answer the specific questions you ask to tailor the response to their condition, and in the end do not even say thank you. It’s OK. They did not want advice, they wanted confirmation that they would not have to change anything.
It is the condition of human nature to want a different outcome while doing exactly what we’ve been doing all our lives. If healing involves change, it creates resistance. If it is something not approved by your ordinary docs and family and friends, it is even less easy.
My guess is that those who found RBF and opted for AP, were the ones who really wanted to heal, who had inner strength to seek and then go after the treatment that works. It takes inner strength to persist, to be the advocate of your own health, to change what is necessary, to be open-minded and clear headed (at least as far as what exactly we want).

I don’t have any energy to waste. I don’t have enough to incorporate everything I should be doing to heal better. And I don’t feel I want to waste any precious reserves of my life force on being attacked, ridiculed, showered with hostility. I am just not strong enough to take it and not be harmed by any such negative downpour.
Once I am fully recovered and am not so easily affected by negative responses, yes, I will be spreading the word!!!
Until then, no, I’m out.
“It takes a single straw to break the camel’s back”, I guess it goes something like that. For a weakened, ailing body, exhausted body and mind, overwhelmed system, this single straw can be anything, even a harsh response to an open, generous heart!

Don’t get discouraged with my take on it.
But if you asked me for an advice, it would be to heal yourself, get strong and then reach to spread the word. Share the surplus! Don’t give away from what is already too depleted to cope. Also: words carry energy, written words do, too. When you are trying to convince somebody of a superior method to heal but you yourself are still ailing and do not radiate resounding health, it will be picked up energetically by the reader and your attempt will likely fail.

Happy New Year and thank you for your sweet, caring and generous heart.
Krys

[lynnie_sydney]

Very wise words Krys.

In my learning about AP and my use of it for the past 10 years, I have found that being enthusiastic about spreading the word has not met with much success. On mino alone, I had 4 years of fantastic wellbeing and terrific blood work results and, to this day, keep well and healthy for most of the time. I was so ready to spread the word. Few seemed interested and some quite hostile. Some (including some people close to me) will not countenance anything not sanctioned by the medical mainstream. This approach is out of the mainstream and people are very wary – even with living, breathing examples of success in front of them (“you probably didnt have a serious or advanced condition” can be the response or a hundred other variations).

Over time, I changed the way I approached things. If people find out that I have a serious auto-immune condition and express surprise that I seem so well, I respond that I am on a medical, but out-of-mainstream protocol. I then wait. If they ask more questions, I respond. If they don’t (and many don’t) I dont say any more. They are the ones who don’t have ears…..at least at that time. I am very willing to talk but I take my lead from the interest (or lack of) of the other person. What I do spend time on is responding in detail to requests for Doctors or information in my region of the world. People who contact us at least have taken the step of wanting more information. Some go forward, some don’t. And that’s okay. IMO, you need to be an upstream swimmer to pursue this form of treatment. It takes, time, patience, alot of tweaking along the way, a doctor you feel comfortable working with and a desire to partner in the healing process. There are a lucky few who can simply go on or switch to mino and get fast, lasting results. The road tends to be more complex for the majority. So it’s a road suited to persisters and upstream swimmers. Landing on this site or forum, finding the Scammell book, speaking to someone who’s had success and wanting to find out more are the first signs of a potential upstream swimmer. So maybe it’s no so bad that they have had to search.

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)

[rcarney80]

Lynnie
I so agree with what you have said. I think a person has to be ready and willing to try the non mainstream treatment. I too have found when I talk with folks about my treatment sometimes saying less is better.
People that are willing to search for answers are more likley to stick with the protocol and fight their way on the Road Back!

Rena

[Eva Holloway]

Laura,
I also was on all those medications and the more I took them the sicker I became until a severe sinus infection send me to my rhematologist who would not give me the antibiotics I needed. I had an appointment with my pulmonary doctor a few days later and when I told him I had this nasty sinus infection he wrote a script for Biaxin immediatly. He gave me 180 pills and a refill. I took two tablets a day for several weeks and within four weeks my husband was wondering what kind of miracle drug I had been taking to start feeling so well. I looked at the internet “RA and antibiotics and found RBF. It has been a great help to me and when ever I meet someone that has any type of RA I give them all the info from RBF even to the point of writing things down and printing out info. My daughters doctor has started to use antibiotics for patients that request them. Also the rheumatic site tells people to go to RBF if thy need more help then they can give.
Eva

Eva Holloway

[laurawm]

Hi Everyone,

While I see the points that each of you are making, and want this kind of feedback from all of you who have been at this much longer than I, I feel that there is always room for planting tender seeds. Even if a person appears to be closed, it is possible that later they can go seek out more information or perhaps they will again hear or see more about what you are saying. Haven’t you ever had that happen? – you learn the meaning of a word for the first time, and then suddenly it seems like it pops up everywhere – how is it that you never noticed it before? Of course it was there all the time, you just weren’t aware of it. For me, a casual acquaintance told me she had been diagnosed with RA but she had a good GP who tested her for Lyme and mycoplasma, and they came back positive – this was right before she was ready to start conventional meds. I listened to her respectfully, but internally I thought – but you could not have been as bad off as me – I will be imminently crippled if I don’t start MTX, embrel, plaquenil, SSZ all right away! But then I went home, cried, and got on the internet to research mycoplasma and RA and Lyme. That’s how I found the RB foundation. This woman who spoke with me never knew the seed she planted and how it ultimately has likely been part of helping me live a much longer, painless life. Yes, I am still sick, and it is always better to speak from a place of mastery and health to have the authority to gain respect with people – but people are suffering as I am but with no hope, and this really bothers me. Every person who is now open to alternative, integrative medicine at one time in history had to have someone, whether a life experience, parent or otherwise, introduce them to the fact that convention does not always hold truth. The fact is, people are scared. Fear is paralyzing and we hold onto even failing treatments in fear of losing any benefits that they might bring because as humans we are scared of our own mortality. By understanding that this is why people are so defensive, it can help us love and reach out.

One of my primary concerns with the blog that I mentioned originally is that the information on ABX treatment is flat out inaccurate and her readership is very large. The other thought is that perhaps she is not completely closed. I guess I don’t believe anyone is ever completely closed, not when they are suffering. They are just scared and scarred. I’m not trying to start an overnight revolution, I just do better psychologically if I turn my anger at the suppression of truth and the reign of greed and corruption towards helping and loving others, even as I am still healing – especially as I am still healing as my pain fuels my energy if that makes any sense.

Scammell mentions that Brown was never overly outraged by the state of suppression of truth because he viewed it as an outgrowth of our culture and time that would pass as part of history and eventually the truth would come out (correct me if I’ve interpreted this incorrectly). I agree with this, but I also know that it takes individuals such as those who started the RB, and our amazing moderators here, all forum participants, ABX and LLMD doctors, and so on to bring this about.

This is not all altruistic. Doing something brings meaning to suffering. Victor Frankl, who survived the holocaust, said we find meaning in life by three means: 1.) understanding our responsibilities in our close relationships (love) 2.) by completing unfinished tasks (work) and 3.) unavoidable suffering (such that one must find internal freedom vs. looking to external and physical comforts for fulfillment). When we begin to engage all three of these levels, we begin to taste real freedom, which is the closest thing there is to real happiness. But with this freedom comes responsibility. If we are fulfilled and free, but we do not give back, then we are once again at a place of meaninglessness. Frankl puts it this way, “Freedom, however, is not the last word. Freedom is only part of the story and half of the truth. Freedom is but the negative aspect of the whole phenomenon whose positive aspect is responsibleness. In fact, freedom is in danger of degenerating into mere arbitrariness unless it is lived in terms of responsibleness.”

I am in no way interpreting anyone’s responses as opposing giving back or not being responsible in sharing what we know – that would be preposterous as everyone here is responding to help me and everyone else all the time! I’m just saying that I want to believe that it is not worthless to gently reach out to people and share our stories and be part of changing our time and our culture even further than we do here within the forum. But also, I am just interested in how people have tried to reach out and it is helpful for me to hear how most responses have been negative. I’ve had some of this as well, but I’ve also had people ask further questions or at least listen intently.

I do appreciate everyone’s thoughts and honesty. It is true that it takes a certain grit to go through with this treatment. It’s just that it shouldn’t be this way. People should be given ABX very early with signs of autoimmune issues and then such lengthy herxing could be avoided for many. But how can we ever get to this point if what is alternative and true is not advocated for to mainstream doctors? Ah, I just keep going in circles about all this in my head.

Thank you all,
Laura

[Maz]

Hi Laura,

As I read your post, I recalled a previous discussion about the same RA Warrior blog entry a while back. This comes up in rounds on the forum, as newcomers are usually pretty astonished and dismayed that AP is not better known in mainstream rheumatology. To explain some of the misconceptions that have arisen over AP in the past, I put together some thoughts in a post on the following thread about this same topic:

viewtopic.php?f=1&t=5025&hilit=ra+warrior

I had a horrendous experience when I first became ill and joined a RA support group on Yahoogroups. Knowing that Lyme had been the trigger for my RA at the time, I was wondering about antibiotic therapy. I posted there to ask about it and got an immediate and nasty response from the group moderator and a few others. One lady (I still remember her name as she was so kind), wrote privately to me and explained that she was on minocycline therapy and that it was best not to discuss it on that group. I was pretty shocked and couldn’t understand why I was treated in that way, so feeling thoroughly scolded and with tail between my legs, I slunk away, unsubbed from that “support” group and began searching for a group of like-minded folks, whereupon I found RBF. 🙂

In an attempt to transmute that negative experience into something a bit more useful, I just decided to focus my energies on volunteering here, to provide educative resources to others who are actively seeking support for the therapy, once I got my feet wet and had gleaned a basic understanding of the rationale for the therapy.

This topic comes up a lot around here, as you might imagine, and there have already been some terrific replies above to which I have little to add of any value. Reading through RA Warrior’s responses to her blog entry again, though, reminded me how this therapy requires such a lot of self-advocacy, especially in more complex cases and it’s clear from those responses that folks had very little understanding of the therapy and were not receiving the kind of support they needed to move ahead with it – either with an AP-friendly support group of peers using the therapy or with an experienced AP physician. These things can be a vital key to the treatment, because as Lynnie mentioned, most often just taking abx is not the total answer and the protocol often need tweaking and supportive adjuncts in a holistic kind of approach.

You’re now pretty well ensconced in the “Lymelands” and will likely have good insight into the workings of Lyme advocacy groups, which focus primarily on action-oriented ventures to spread the word. RBF, on the other hand, functions from a different perspective and rather than being “action-oriented,” the foundation’s main mission focus is on preserving the legacy of Dr. Brown and providing physician lists, educative resources and peer support to those who choose the therapy. We estimated this past year that RBF gets about 7 to 8000 requests for info and physician referrals per year and this keeps us pretty busy. RBF is in great need of volunteers who feel similarly and have the time and inclination to become familiar with the materials on the main site and to pay it forward here. 😉

[laurawm]

Thanks, Maz. I do understand the function of the RBF and am in no way trying to be critical or suggest a new function of the forum itself. I am just interested in how as participants we can best communicate and advocate for ABX treatment, both online and in our daily lives – not as part of RBF, but just as individuals who care. I hope that makes sense. I won’t bring it up again as the feedback I have received is more than clear.

[laurawm]

Okay, I’m being defensive as I feel a bit discouraged by such an overwhelming consensus towards not reaching out overtly – though I do understand it when I get away from my emotion. I appreciate hearing your experiences and it was for this reason that I started the thread to temper my natural inclinations to dive head first eyes closed deep into things and then only realize that this is what I’ve done once I’m at the bottom and starting to drown. So, thank you – I’m sure I’ll figure out a balance over time that matches my beliefs about advocacy but also gives back here to the forum and RBF that is supporting me through such a difficult time. 🙂

[Suzanne]

Laura, you have asked the questions many of us have asked before and I know will be asked again by others. Listen to your heart and do whatever you feel need to do. We have just responded with our experiences and why we choose to do things the way we do now.

Our paths lead us here. Others who know they are on the wrong path, or who can’t make sense of what they are being told, will find us. We can often see others on the wrong path – I follow many on traditional meds and hold out genuine hope along with them that each new med or combo will be the ‘the one’; I see moms post of being told their child is in drug-induced remission yet they cannot even dress themselves – but if so much of their identity is wrapped up in blogging about a terrible disease, they seem likely to continue on that path because that is what is expected, pain and suffering from the disease.

As others have posted, you will be able to make a difference by sharing your story. It will help someone who wants to hear it.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[A Friend]

@laurawm wrote:

Okay, I’m being defensive as I feel a bit discouraged by such an overwhelming consensus towards not reaching out overtly – though I do understand it when I get away from my emotion. I appreciate hearing your experiences and it was for this reason that I started the thread to temper my natural inclinations to dive head first eyes closed deep into things and then only realize that this is what I’ve done once I’m at the bottom and starting to drown. So, thank you – I’m sure I’ll figure out a balance over time that matches my beliefs about advocacy but also gives back here to the forum and RBF that is supporting me through such a difficult time. 🙂

Laura, All,
I’ve just read the posts and all the replies at one sitting. To all of these the only thing I have to add is that sometimes sharing a link or two, which is loaded with information that “fits” the problems they have or some of them, may be as much as we can do, or need to do. A quote I’ve thought of often, especially as regards AP, is that “You can lead a brain to knowledge, but you can’t make it think.” Until, and unless, a person realizes they need to investigate outside the box they have put themselves in, we can’t do it for them –nor do we want that responsibility. They are the one who needs to realize there is a road back, but they have to do the work of seeing if it, and protocols involved, fit their puzzle. Unfortunately, some may feel so helpless and actually be unable to navigate these waters, that they need a physician to do all the work for them, and to make all the decisions without their input.

Most of us probably find this thought really scarry now … the thought of someone else making all our decisions. (I know I would, as figuring out my own puzzle has taken much conscious thought.) That’s how I got into the predicament that put me on the road to illness over two years, was my internist not giving me information about the need for probiotics replacement when he prescribed antibiotics during recurring illnesses for two years. What a learning experience the last two decades have been, but I’m glad I was on this road, because I know the protocols/medications the first rheumatologist wanted me on after I later developed chronic illness would have had me 6 feet under long ago.

Best to you all,
AF

[Trudi]

@A Friend wrote:

“You can lead a brain to knowledge, but you can’t make it think.”

Same as “You can lead a horse to water, but you cannot make him drink.” As an adult, I don’t want to be harrassed about treatments that I don’t agree with–so tell me and let me decide. However, when I hear about suffering little children whose parents won’t even consider the antibiotic treatment, I am very saddened, but the parents still have to make their own decisions based on their own understanding.
Bottom line, let people know about this option and you will have fulfilled your obligation to get the word out.
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[justsaynoemore]

Laura, what a great question and I am impressed with your thoughtfulness and originality. If there is anything I can do to help, please let me know. Happy New Year! Cathy

[gratefulgirl]

Laura, you’re not alone as Maz & Linnie mentioned. I had the same passionate feeling when I first discovered the support of this site/ forum & the caring folks who participate & moderate. I brought up the need to make the site more key word rich/ SEO — search engine optimized, etc. in order to get the word out about AP therapy so more could realize the benefits that we are sharing in!

This takes work & time & I quickly realized that that might not be practical as this site is largely supported by the loving volunteers who put precious time into keeping RBF going strong. If I did not have a 24/7 business I’d want to participate in helping in this way, but, alas, time is at a premium.

So, your love is obvious & appreciated — always!

Happy New Year to you & everyone here 😉

[Author]

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