A.P. getting any real attention out there??

[Jennhere]

So, I feel really good.  I used to be a mess with the pain and fear.  Since I've gotten my life back on A.P. I've been to Death Valley, the Grand Canyon, Texas and New York.  I've gotten myself back.  My best friend is probably moving to Germany this summer and I will certainly go visit with my kids.  Before A.P. I thought I'd be in a wheelchair, my life over, unable to even feel my kids as I hugged them because my joints screamed louder than anything else. 

I wish more people knew about A.P.  I don't hear about it in the news.  I don't hear people coming here and looking into A.P. because their doctor told them to get on A.P. and come here for support…. I hear people coming here and saying the docs told them A.P. is voo-doo medicine.  So, I get a bit down thinking that so many others out there are unaware of the possible benefits of A.P. because the commercials are all for the big named drugs… 

If anyone is here on the boards looking for some kind of assurance that this crazy A.P. stuff works, Believe me ((it works))…!!!!

I just wanted to say that out loud.  I feel like A.P. doesn't get the credit it deserves.  I have a great life again!

Oh, and I'll be gone for the next few months because I'm moving myself and three kids to TX where I just bought a home!  AND I'm going to Long Island for the month of August with my kids to see family…and Niagara Falls and the Renaissance Faire in Tuxedo and Howe Caverns and the Baseball Hall of Fame in Cooperstown….

Thanks to A.P. ((and the folks here who encouraged me to soldier on when I was at my worst thanks to my disease))

Jenn

[Michele]

Jenn,

What a wonderfully encouraging post!!!! Yay for you!!!!!!

Your upcoming new home and travel adventures sound awesome!!! I can't wait for the day when I can also post of my travels sans pain!

For newbies, I can say that I HAD rheumatoid nodules on my hands and couldn't hold a fork in my left hand, couldn't tolerate my kids sitting on my lap or hugging me tight, or let my kitty rest on my chest when I am lying down. AP brought all of that back to me. My journey is slightly detoured, but I absolutely believe in the bacterial root cause to this chronic disease!

Congrats again, Jenn!!! I'm so glad I'm no longer going to have to arm wrestle you to become the biggest baby on the RA playground!!! :roll-laugh:

Michele

[Kim]

Way to go, Jenn, I am so happy for you.

Hope you have a wonderful summer and even more wonderful new life…kim

[whaleharbor]

Jenn,

Congratulations your wellness is important not only for you but for the newbies (like me)..so I thank you for sharing.

YOU'VE HIT UPON SOMETHING VERY IMPORTANT FOR ALL OF OUR FUTURES.

I agree with you, not only does AP not get the attention it deserves but autoimmune diseases get no attention…other than for the big scary drugs.  I know we collectively do not represent all horrible diseases out there but we count too.  Right now breast cancer is trendy, aids is trendy, heart disease for women is trendy, obesity is trendy…and I appreciate all of those diseases getting the attention and funding that they deserve…but AI diseases and all treatments…especially a treatment like this deserves big media attention, investigation, funding and awareness too.  So many more could be helped and so many more advances could be made for all of us.

We need a celebrity with influence and a big mouth.  Montel has MS so he is a kindred spirit don't you think?  Perhaps we can all write to him.  How about Oprah…seems like anything she touches turns to gold.  Perhaps we can all begin an Oprah writing campaign.  Kathleen Turner has RA I wish she were more proactive…perhaps we can all write to her.  Perhaps we can all write letters to our editors about our own experience and appreciation for the Road Back Foundation…that would gain and awareness.  I think we all need to start getting loud for our own sake and the sake of those that are sick and don't know about another treatment choice.

So shall we do it guys?  Veterans…what say you?

— whaleharbor

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

[lynnie_sydney]

Jenn – so happy to hear your uplifting story and thank you for sharing it on the Board. It is so important for new people to be given that kind of hope from someone who has so recently had that kind of succcess. 

As for AP not being widely known, this is my (very personal) perspective on this. I dont think it will ever likely become mainstream for a number of reasons.

• AP is not a one-size-fits-all treatment. What works for one will not work (or work in the same way) for another. It often takes time, patience (on behalf of both doctor and patient) and often a whole lot of tweaking before things start to bear fruit.  [/*:ec3mtcgu]
• At first, things often appear to be getting worse and that is hard for alot of people (docs and patients alike) to both understand and to ride out – that is not the way any of us have been taught that medicine works. [/*:ec3mtcgu]
• Time and tweaking a protocol to suit the individual is definitely not the way medicine as a whole is set up. Protocols are designed to suit populations, not individuals.  [/*:ec3mtcgu]
• As far as the patient is concerned, it takes a mindset that encompasses taking a measure of responsibility for our road to wellbeing, rather than just being recipients of the latest combo of meds. There is a lot of 'just fix me' attitude out there. I know  from personal experience, that there are a whole lot more people who know about AP protocols than there are people who are on one.  [/*:ec3mtcgu]
• Those who are on an AP protocol often do not have a completely straight road (Michele is a case in point) and they need the tenacity to keep going. Not everyone is built to be able to do this. And there are also many who prefer to take the shorter term gains of treating their symptoms without worrying about the consequences of a (seemingly distant) tomorrow. Some will change their views on this over time, some will not. It's the human condition. 
  [/*:ec3mtcgu]

What I believe those of us who have had success can do best is to be open and willing to impart our experience and our knowledge to those who can and want to hear. Some will not want to listen, and some will not be ready. However, change can – and does – happen one person at a 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)

[Maz]

[user=30]lynnie_sydney[/user] wrote:

What I believe those of us who have had success can do best is to be open and willing to impart our experience and our knowledge to those who can and want to hear. Some will not want to listen, and some will not be ready. However, change can – and does – happen one person at a time.

As frustrating as the current state of affairs is, I have to agree with Lynnie. In addition to her thoughts above, the central issue is that rheumatoid disease is still not widely viewed as being infectious in nature, but the result of an immune system gone awry that requires suppression. This sort of reversal of a medical paradigm takes years of indisputable conclusions drawn from clinical trials and studies that can take generations to complete before finally being accepted and taught in medical schools. Not only this, patients, themselves, find it hard to believe that a simple antibiotic could turn around a disease that they've been told is incurable and can only be medically managed with other drugs.

That said, even if infectious causes were ulitmately widely agreed upon, for anyone who has been keeping track of the Lyme wars, not only is there endless heated argument about what constitutes a proper diagnosis, but also what constitutes effective, adequate treatment.

Also, there are currently no foolproof, easy or cheap testing methods for the type of pleomorphic organisms with which we're dealing. They are uncanny shapeshifters that have the ability to elude the immune system, added to which not a great deal is known about the immune system and why there are so many variations in the how's and why's of it functioning as it does. It remains largely a mystery.

And, then there is the the overshadowing fear of antibiotic resistance, which would likely only increase to panic-stricken heights in the field of science and medicine with every newly identified virulent strain of organism causing human and animal infections that didn't respond to current treatments.

For patients and patient advocacy organisations to become openly vocal in the face of all these hurdles (and no doubt this doesn't even touch the surface of these), could be setting up the kind of push-pull, tug-o-war situation that we're now seeing in the Lyme Community which has found itself up against the impenetrable fortress-like might of the Infectious Diseases Society of America. In that case, it has taken an elightened politician (the Atty General of CT) to chip away at the 'old boys' club,' all-knowing, god-like mentality that protects these types of medical organisations who are chartered to map out not only what constitutes a disease, but how it's effectively treated. In addition to which, a simple treatment such as this that could be easily dispensed by your average GP could wipe out the field of rheumatology altogether.

As Lynnie said, it really has to be a grassroots movement that will ultimately tip the scales of demand and supply – maybe the single most powerful force in any open market. As more people become aware of and choose this therapy, the more awareness and interest in it will evolve in the medical field. To these ends, it remains the focus of The Road Back Foundation to provide both educational and supportive resources to patients and their physicians.

Of some interest is that the interest sparked in using minocycline for multiple sclerosis and the current studies underway has provided the incentive to one pharmaceutical company who is currently researching the immune-modulatory properties of minocycline in an effort to produce a DMARD without the antimicrobial properties. It misses the point of infectious theory, of course, but it's a step in the right direction – a very clear sign that they feel the huge investment in research and development of a new form of minocycline holds the potential for a very lucrative market opening. So there is no doubt that this treatment has been found to be worthy of further investigation (if only for its immuno-modulatory properties) and that there is a certain level of anticipation that this particular market will be fruitful in the coming years and in treatment of the so-called “autoimmune disorders.”  

Oh…and did a bit of research on Kathleen Turner a few months ago…she recently hit the headlines with the publication of her new book and was interviewed on a number of big talk shows, including Larry King. In every instance, she was evasive about talking about being on AP for her RA, saying she's not at liberty to discuss this. Turns out she's become a spokes-celebrity for one of the biologics…Enbrel, if memory serves? So, this would not be very smart with regard to her income and contractual obligations. In 2001, however, she spoke openly about being a patient of Dr T's in Boston and taking minocycline. Here's an article where she did confirm she was on AP:

http://www.usatoday.com/news/health/spotlight/2001-06-01-turner-arthritis.htm

This subject has come up quite a bit on the bulletin board…for anyone wanting to read more, you can try doing a few searches on the old bulletin board to see what comes up.

I don't mean to sound negative about this in any way. On a personal level, I'd also like to see AP shouted from the rooftops….but bearing in mind that “for every force there will be an equal and opposite force,” I feel that until the science behind it can no longer be ignored, this therapy is one that must gather strength gradually through patient awareness and personal experience of its efficacy….and a few enlightened doctors willing to step out of the box to help us.

Peace, Maz

[Anonymous]

Jenn,

Thank you for your wonderful report…I am hoping, praying, and longing for the day I feel up to going out.  I am having a challenging day, coping with a bit of nausea and considering changing medications…I am on the minocycline right now.  I have been taking it for about 6 weeks, and my stomach is getting tired I think.

I started with the generic tetracycline, but was concerned it wouldn't be as affective as the protocol min …boy what a difference when I started it at 100mg bid on M, W, F… I had to drop down to 100mg once a day on MWF and still seems too much.

Could you, or others out there, share which of the tetracyclines you took and how often

Blessings to you, and again thanks for sharing,

Carla

[Joe M]

[user=30]lynnie_sydney[/user] wrote

• 
  [/*:1jcevpmv]
• As far as the patient is concerned, it takes a mindset that encompasses taking a measure of responsibility for our road to wellbeing, rather than just being recipients of the latest combo of meds. There is a lot of 'just fix me' attitude out there. I know  from personal experience, that there are a whole lot more people who know about AP protocols than there are people who are on one.  [/color][/*”>
• Those who are on an AP protocol often do not have a completely straight road (Michele is a case in point) and they need the tenacity to keep going. Not everyone is built to be able to do this. And there are also many who prefer to take the shorter term gains of treating their symptoms without worrying about the consequences of a (seemingly distant) tomorrow. Some will change their views on this over time, some will not. It's the human condition. 
  

I agree that it takes a mindset that encompasses taking a measure of responsibility for our road to wellbeing.  Part of that responsibility, in my opinion, is weighing all the benefits and risks of every treatment option and going forward from there.  I think it is misguided to suggest that people who don't choose AP, or try something else when it is not working, are not “tenacious” or are ignorant of potential side effects.

There is another post today from someone suffering greatly.  Is it rational to be stubborn and not consider a change when AP is not working after a year?  Two years?  Five years?  At some point, it becomes a quality of life issue and a rational person needs to make a rational decision about their treatment. 

All of this is in the context of why AP is not more mainstream.  My opinion, and one that Maz touches on, is that it is not proven beyond a reasonable doubt that RA is caused by mycoplasma.  Not only that, the double blind studies that prove its effectiveness state explicitly that the mechanism behind its effectiveness is not known, and it is most effective in mild to moderate disease states.  Until it can be proved that RA is caused by mycoplasma, AP will continue to be just another one of the many treatment options available to RA patients, most of whose main concern is to return to a pre-disease level of functioning. 

[Jo]

[user=20]Joe M[/user] wrote:

• I agree that it takes a mindset that encompasses taking a measure of responsibility for our road to wellbeing.  Part of that responsibility, in my opinion, is weighing all the benefits and risks of every treatment option and going forward from there.  I think it is misguided to suggest that people who don't choose AP, or try something else when it is not working, are not “tenacious” or are ignorant of potential side effects.

  There is another post today from someone suffering greatly.  Is it rational to be stubborn and not consider a change when AP is not working after a year?  Two years?  Five years?  At some point, it becomes a quality of life issue and a rational person needs to make a rational decision about their treatment. 

  All of this is in the context of why AP is not more mainstream.  My opinion, and one that Maz touches on, is that it is not proven beyond a reasonable doubt that RA is caused by mycoplasma.  Not only that, the double blind studies that prove its effectiveness state explicitly that the mechanism behind its effectiveness is not known, and it is most effective in mild to moderate disease states.  Until it can be proved that RA is caused by mycoplasma, AP will continue to be just another one of the many treatment options available to RA patients, most of whose main concern is to return to a pre-disease level of functioning. 

[/*]

I partly agree and partly disagree.  The tenaciousness in not simply in “sticking” to the protocol, but rather in studying, learning, applying and tweaking it to fit one's own personal needs.

The protocol states that the inflamation must be dealt with or the antibiotic can not get to the bacteria.  So finding the correct way to reduce the inflammation for oneself is part of the protocol.

Herxing and pain are also things that must be dealt with. As well as working thru all the items on the list of things to check, if it's not working ,from the protocol.

 We have many tools, supplements and tests that are available to us that did not exist in Dr Browns time. Using those to our own best advantage is also part of being Tenacious.

Please don't take this wrong, but in your signature line you state that your wife is in remission with Humira. That is not correct.  . As long as she is currently taking the Humira, it's not remission, it's controlled.

On the other hand, many people have achieved a true remission with AP, some for a decade or longer. And some reports of a cure.  This has not been achieved with any other treament.

Blessings

Jo

[Joe M]

Sorry Jo, but you are wrong.

Remission:

5.Medicine/Medical. a.a temporary or permanent decrease or subsidence of manifestations of a disease. b.a period during which such a decrease or subsidence occurs
Michelle is definitely in remission.  She has no symptoms of RA.  Her doctor is also very comfortable using the word remission.  To me, “controlled” means staying at a consistent pain level, not getting worse but not getting better either.

You also have the “blame the patient” attitude that is seen often on this board.  That is; if AP is not working it is because the patient is not tweaking the protocol properly or not taking the right supplements or whatever.  That is a crock.  For AP to become mainstream, it should have a strict defined course of treatment, not one that needs tweaking and supplementing. 

I would also like to see the documented evidence of ten year remissions or cures with AP.  Internet stories don't cut it. 

Best,
Joe

[Jo]

[user=20]Joe M[/user] wrote:

Sorry Jo, but you are wrong.

Remission:

5.Medicine/Medical. a.a temporary or permanent decrease or subsidence of manifestations of a disease. b.a period during which such a decrease or subsidence occurs
Michelle is definitely in remission.  She has no symptoms of RA.  Her doctor is also very comfortable using the word remission.  To me, “controlled” means staying at a consistent pain level, not getting worse but not getting better either.

* * * * *

Nope, sorry .. it's not remission if she has to continue to take the medication in order for the subsidence or decrease of manifestations to be maintained.  Though you are correct that many people use the word incorrectly for it's feel good effect. 

You also have the “blame the patient” attitude that is seen often on this board.  That is; if AP is not working it is because the patient is not tweaking the protocol properly or not taking the right supplements or whatever.  That is a crock.  For AP to become mainstream, it should have a strict defined course of treatment, not one that needs tweaking and supplementing. 

I don't blame anyone.  Though I can see that you might be feeling defensive, so I will not continue further with this discussion.

I would also like to see the documented evidence of ten year remissions or cures with AP.  Internet stories don't cut it. 

Best,
Joe

[linda]

I stated in a post last week that the medical profession is giving us as a society the kind of health care we're asking for-fix me now is exactly right. It is up to us to begin to ask for alternative therapies, and like I said last week also, we have to convince our family and friends to do the same thing. Medicine is a business run by profit, like anything else- supply and demand, like Lynnie and Maz said.

I have to say here as well that I completely understand what Joe is saying. I went into remission on Remicade 4 years ago, no pain, no symptoms. Unfortunately, it did not last, but that is not exclusive to biologics. Many posts lately have been from people who are experiencing a return of symptoms after 5 yrs or so of being on AP. The truth is that there is still so much to learn about these diseases; there is now research into making biologics safer, and also more research into infectious causes of arthritis. For those like me who have been sick for over 20 yrs, where AP may not be effective, a combination of a biologic and AP may be necessary. There is also the practical reality (it always comes back to money) that some of us don't have 1-2 years to wait for results, we have to be able to function and work. We have bills to pay and families to raise- and this is IMO one of the biggest reasons for the lack of enthusiasm by some for AP. There's a reason for the fix me now attitude we have when we see a doctor, the consequences financially for those with long term illnesses can be devasting. That in addition to the reasons listed by Lynnie and Maz probably keep the AP from being more popular.

I think it's wonderful that Jenn and so many others are doing so well on AP. I do believe that if it was more popular it would be given as an option to patients early in their disease and be more effective- how I wish I had known about it 20 yrs ago. I still plan on trying it again when I get to TX (Aug-not long now), but being single I have to be able to move and find a job when I get there, so I don't have a choice than to continue with the biologic I'm currently taking. Thankfully, thru this bboard I have found a rheumy in SA that will rx abx. I guess what I'm saying is that I'm grateful for those who are using AP successfully, but that it is not always a practical option for some of us.

Linda

[Maz]

[user=20]Joe M[/user] wrote:

I would also like to see the documented evidence of ten year remissions or cures with AP.  Internet stories don't cut it. 

Hi Joe,

Without getting into the semantics of what remission means, my personal view is that there are two types of remission. The first being drug-free remission and the second being medication-reliant remission. My interpretation of Jo's comments above was that she was referring to the drug-free remission that many have achieved by using AP.  

Also, not sure why “tweaking a dose” of anything would create a “blame the patient” attitude? Maybe it's all in the perception of the beholder (patient or physician), but even the more commonly used drugs need tweaking and adjusting for individual patients. This doesn't mean any patient is a failure, merely that not everyone is a cardboard cut-out that responds to the same dose or drug. Whereas someone on Humira or Enbrel may need to inject their medication every two weeks, others might find they only need it every three weeks, for example. Finding the right medication and dosage would take some individualizing and tweaking in pretty much every instance, whethere a person is on AP or methotrexate or really anything else for that matter.

Similarly, I'd also like to see the documented evidence and the supporting stats that show that ten year drug-free or even medication-reliant remissions exist for those on the more commonly used DMARDs who are free of side-effects. I just don't think they exist and the biologics are probably too new to have acquired any such stats just yet.

T'was ever this….perception creates perspective and it's no different in any aspect of life. In the world of rheumatoid disease, if something works for us, we're just grateful it works and, anecdotal or not, pinning my hopes on AP thus far hasn't been wasted.

I sincerely hope Michele continues to enjoy remission of her symptoms while on Humira. Perhaps, as individuals who have chosen distinctly different treatment paths, though, neither your lovely wife nor I can be 100% certain of maintaing a ten year remission till it's been achieved, in spite of objective stats and documented evidence, whether scienifically-backed or not. As such, I find much more hope in hearing of individual successes here on this board, which contributes in a much more meaningful way to my road back.

Maybe this is a little 'out there,', but it's not out of the realms of possibility, if one has the inclination, time and energy, to try locating and contacting some of the people in The New Arthritis Breakthrough who provided testimonies of their remission to see how they are doing today. A few months ago, I spoke with one lady in Florida who was requesting an AP physician referral who told me that she was seeking this therapy on the advice of a neighbor who had RA many years ago and was a patient of Dr Brown's. She has maintained her remission since. I asked if this lady would kindly ask her neighbor if she'd write a testimonial for RBF website, but haven't heard back as yet.   

Peace, Maz

[Joe M]

What defines a true remission in rheumatoid arthritis patients? Can a doctor predict if a patient will go into a remission or how long a remission will last? Are there statistics on what percentage of rheumatoid arthritis patients ever achieve a remission? What can an RA patient do that will give them the best chance at achieving remission?A. While there is no known cure for rheumatoid arthritis, up to 30% of patients may feel they are “cured” of their disease. What these patients are actually experiencing is a clinical remission. A remission in rheumatoid arthritis is defined as the absence of clinical signs of inflammation. While a very small percentage of patients may be able discontinue their arthritis medications, over 95% need to continue on the medication to remain in remission. The American College of Rheumatology (ACR) classification criteria for determining clinical remission include:
[*]morning stiffness less than or equal to 15 minutes[/*] [*]no fatigue[/*] [*]no joint pain[/*] [*]no joint tenderness or pain on motion[/*] [*]no soft tissue swelling in joints or tendon sheaths[/*] [*]erythrocyte sedimentation rate -(a blood test which measures inflammation) less than or equal to 30 in females and 20 in males[/*]
http://arthritis.about.com/od/arthqa/f/remission.htm

http://linkinghub.elsevier.com/retrieve/pii/S0049017205001265

http://www.hopkins-arthritis.org/physician-corner/education/acr/acr.html#remis_rheum

http://www.arthritis.org/remission-is-possible.php

Not feeling defensive at all, just know what I'm talking about.

[Joe M]

Great points Maz.  In fact, the FDA would not consider Michelle in remission because she is still taking medicine.  So it is semantics, but most definitions of remission fit the one I posted earlier.

It is documented that 10% of all RA cases remit naturally.  (I can dig up the documentation if anyone is interested).  So if someone on a biologic or on AP remits, how do we know it is not a natural remission?  We don't, unless they stop the medicine and it comes back. 

I changed my signature to more accurately reflect Michelle's current condition.  I apologize for any rancor but I feel strongly about allowing patients to make choices based on their circumstances, as Linda pointed out, and respecting those choices. 

[Author]

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