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

[Cheryl F]

Next step = You Tube Videos. We are headed out to go wakeboarding, maybe a video of a scleroderma patient wakeboarding in a lake would seem “too good to be true.”

It was two years ago today that we were in Boston to see Dr. T. Funny thing, based upon what I had conveyed about Jess' condition, John McDonald reccomended that we consider renting a wheelchair for our time in Boston. Looking back, I can grin about it, not so much at the time.

It is amazing that two roadbackers from across the world could meet up. WOW!

Cheryl

[Bill]

Joe

From much of what I have read there seems to be good reason people would fear biologics. Certainly you have read and heard (on commercials) of the long laundry list of very dangerous side effects and other illnesses that are possible with biologics.

And indeed there is a great deal of scientific evidence  that AP works. Even starting with research prior to Dr. Browns work. But I think the work of PHD Microbiologist Trevor Marshall whose specialty is molecular modeling of the immune system really offers droves of research supporting this theory. It is also how he cured himself of his terminal autoimmune disorder sarcoidosis. He has really just picked up the ball from Dr. Brown  advanced it down the field and provides droves of research  and supporting evidence supporting the infectious cause.

Take a look at the cwd bacteria in the electron microscope photo's of Nobel nominated PHD  Microbiologist  Gerald Dominique. I think it makes it pretty clear the most modern and best science available is proving the infectious theory.

 I don't think the companies that make billions off of immune suppressing drugs are really very interested in investigating this low cost and often effective approach. Do you??   Let me see… several thousands of dollars a month for a biologic or less than a hundred bucks for AP. Hmmmm…….  I wonder…???  Im sure these companies just can't wait to see the infectous theory validated.

 But hey to each his own. Your certainly more than welcome to support big pharma and  the AMA .  And certainly drug reps have to make a living too.

But irregardless of all this I'm very happy your wife is doing well. And I Hope she does better with every passing day.

Be well

Bill

[Jennhere]

http://www.msnbc.msn.com/id/24969600/

🙁  I wish more people knew about A.P. so that some of this could be avoided.

[Bill]

Jenn:

 Whoa!  What an article ! Imagine that…! Abbot labs top money maker is Humira with 3 Billion (ahh… yeah 3 Billion) per year. Schering-Ploughs top money maker Remmicade is a piker by comparison only bringing in a measely 1.65 billion a year!! Looks like rheumatic disease is very big and profitable business.

 Imagine the joy in the heart of those profitting from these drugs should  the infectous theory of rheumatic disease ever be proven. They will probably be dancing in the streets!!! Perhaps crying tears of Joy!! Downright Giddy with delight!!……

 Well with the increase in cancers that these biologics  may cause. These companies may want to start working on some new drugs for lymphoma and melanoma. I smell opportunity here……

 Seriously though, thanks Jenn for a great link to a very informative article.

All the best,

Bill

[Joe M]

Hi Bill,

I am aware of Trevor Marshall's work and have followed it closely for the past few years.  I have no doubt CWD bacteria exist.  However, until someone can explain to me why almost 50% of the population tests positive for mycoplasma without any symptoms of autoimmune disease, the book is still out.  I'm not saying it's not a factor, but it's certainly not the whole story.   Also, there are people with RA who test negative for mycoplasma. 

TM's work is noteworthy, as is the work of pharmacutical companies who are furthering the research of the immune system.  Any research is good research in my opinion.  The pharmacutical companies do make money, but they also put billions into research and development.  I do not begrudge any company from making a profit.  It is why a company is in business.  Biologics have been life changing for many patients who failed all other therapies including AP.  Like the oil companies, people complain about their profits, but I wonder how many who complain have oil company and pharmacutical company stocks in their 401K's and IRA's? 

I don't have a beef with the pharmacutical industry.  Remember, “big pharma” makes the tetracyclines, including minocycline, as well.  In fact, Lederle, the company that came up with minocycline, also created methotrexate.  Without big pharma, you'd have to cook up a batch of minocycline yourself, something beyond my capabilities.

I am aware of the side effects of biologics.  Check out the side effects for minocycline.  Not exactly benign.  When I factor risk, there are two components.  Severity and frequency.  Yes, serious infections can result from using biologics, but the frequency is quite low.  It's no different than flying in airplanes.  Airplanes crash, and when they do usually everyone is killed, but it happens so infrequently that it doesn't stop most rational people from flying.  Same is true with biologics. 

Regarding the cancer link Jenn posted, the FDA received 30 reports of cancer in juveniles in 10 years.  That is 3 a year.  Now factor in that people with RA and other autoimmune diseases are more prone to getting cancer than the general population.  Proving cause and effect between biologics and cancer will be a daunting task for the FDA.   I swear some people think getting one injection of anti-tnf will kill you the next day.

Michelle went from bed-ridden to “normal” in a month because of Humira.  I think it is a miracle drug.  Inhibiting one molecule out of the millions in the immune response has eased the suffering of thousands and thousands of people around the world.  Humira is not a poison concoted by the evil conspiricy of big pharma.  I urge you to read a short narrative of the history of anti-tnf meds:

http://www.arthritis-pain.com/research/tumornecrosis.htm

We appreciate everyone's good thoughts and we really do think we are all in this together.  Wishing you and everyone the best of health.

Joe

[Joe M]

[user=15]Bill[/user] wrote:

 Well with the increase in cancers that these biologics  may cause. These companies may want to start working on some new drugs for lymphoma and melanoma. I smell opportunity here……

 Seriously though, thanks Jenn for a great link to a very informative article.

All the best,

Bill

Bill, do you think anyone would be complaining if “big phama” actually did come up with a cure for lymphoma and melanoma?   And yes, it  is a very informative article.  The FDA is going to  study something.   I'd better sit down.

[John McDonald]

Joe – Thank you for keeping us honest here.  Your comments are reasoned and articulate and you give us a point of view that is often at odds with our own. Knowing you are here gives me pause before I make some claims. I would argue that I am among your control subjects (AP / MP) for Michele and she is certainly in my radar should my AP / MP ever go down the tubes.

I also do not have an overwhelming problem with big pharma. I am making Sankyo happy enough with 4+ Benicar every day and glad to have them.

I'm not so sure the 50% mycoplasma argument is valid. It stopped me when I first heard it from Richie and for more than a year thereafter. But by way of example my oldest daughter has attention deficit disorder and I probed that condition on a safe, non-school night with a mere 25mg of Minocycline. She slept through much of the next day and when awake had the ADD day from hell. That repeated every weekend for weeks before I could boost her to 50mg at which point it started all over again. That is no medical proof, but it begs the question about 50% of the population without symptoms. Maybe autoimmune is too constraining. And I'm told that 25% of the world's population is a latent carrier of tuberculosis, asymptomatic. It would be hard to argue that they aren't at risk. Clinical medicine still just doesn't know much about bacteria that they cannot easily culture in a petri dish and which do not fit easily or comfortably into Koch's Postulates.  There is a lot of bacteria that doesn't culture nicely in vitro. Lyme borrelia is a good example as is Helicobactor Pylori, the stomach ulcer bacteria.  This following paper was a real eye opener with respect to clinical medicine's grip on infection:
Identification of bacteria on the surface of clinically infected and non-infected prosthetic hip joints removed during revision arthroplasties by 16S rRNA gene sequencing and by microbiological culture[/size%;”>

[align=left]Kate E Dempsey1, Marcello P Riggio1, Alan Lennon1, Victoria E Hannah1, Gordon Ramage1,David Allan2 and Jeremy Bagg1[/align]
[align=left][/size]The researchers using PCR found thermal vent bacteria in failed protheses; as if the surgeons were replacing hips over Old Faithful or in a deep sea trench.[/size%;”>[/size][/align]

[align=left]I agree that there is a lot left to prove with AP or MP or Humira for that matter, but I find the 50% asymptomatic mycoplasma argument to be more polemic than truly satisfying.[/size%;”>[/size][/align]
[align=left]-john[/align][/size%;”>[/size]

[Bill]

Hey Joe,

 I appreciate your response. Actually I'm not against good pharmaceuticals. I appreciate them. What I'm against is greed, excess and a corporate marxist mentality that seems to no longer seek cures for disease but lifetime treatments that cost hundreds of thousands of dollars over a lifetime in many cases.

A medical establishment that for many, many years has attacked alternative therapies and alternative Doctors in order to protect their profits. Dr Stanislaw Burzsinski and his anti neoplastin cancer therapy is a perfect example. Despite Dr. Burzsinski's amazing record of brain cancer remissions he was attacked relentlessly by the entire “medical' cartel because he posed such a threat to their profits. The poor man had to have a team of lawyers just to keep the attacks at bay despite his successful clinical trials and scores of patients who he kept alive with his therapy. It took a hearing  of congress with hundreds of his patients testifying to keep him from being shut down. And still the FDA only allows limited trials of his highly effective therapies.

So yes I'm saying that when Abbot labs makes 3 billion a year on Humira and it is their biggest seller and when Schering Plough makes 1.65million on Remicade and it is their biggest seller, they do not want to see the infectious theory of rheumatic diseases validated. Tell me Joe do you really think that they want to see a treatment that cost's less than a thousand dollars a year replace their biggest seller which cost's several thousand dollars for each treatment??? Can you honestly say you beieve that?? I know I don't and neither do several MD's I have spoke to about it. My Doctor is not an AP Doc. I had to talk her into giving it to me. She is amazed at how much better I am doing. And She said “Bill the reason this is not promoted as treatment is because their is no money in it” So let us not pretend that the patients well being is put before the profits because unfortunately in too many cases that simply is not true. I certainly did not call it a “conspiracy”. Those were your words. But I am calling it a result of excessive greed resulting from a form of a medical monopolyof sorts.

 I would not give too many kudos to lederle either. They have pushed the cost of Minocin to over 600.00 an obscene disgrace. It competes with their rheumatism drugs. That is why were all buying it from Canada.

 You seem to paint quite a pretty picture of humira and other anti tnf drugs. Unfortunately the results and feedback I have recieved from others  on them is not nearly so pretty.

Joe you are really not going to try to compare the side effects of minocin with the side effects of immune suppressing biologics are you my friend?? Because we know there is no comparison. Biologics  can cause serious infections and other serious diseases ( read the advertisments) Minocin is quite benign in most cases.

Joe no offense to you my friend. I am very pleased that your wife is doing so well on humira and that you have the resources to get it. My hope is for the greatest of health for Michelle and your whole family. But if you want me to pretend that the medical establishment puts patients before profits, sorry I have seen too much at this point to believe that fairy tale. It simply is not true.

 But I do greatly appreciate that dwindling breed of medical personal that really care about people first. Dr S in Iowa and my own Doctor come to mind.

peace and health to you and your family, Joe.

Bill

[Bill]

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

[user=15]Bill[/user] wrote:

 Well with the increase in cancers that these biologics  may cause. These companies may want to start working on some new drugs for lymphoma and melanoma. I smell opportunity here……

 Seriously though, thanks Jenn for a great link to a very informative article.

All the best,

Bill

Bill, do you think anyone would be complaining if “big phama” actually did come up with a cure for lymphoma and melanoma?   And yes, it  is a very informative article.  The FDA is going to  study something.   I'd better sit down.

 Joe Im pretty sure you understood I was being “tongue in cheek here” And make no mistake Im all for curative therapies. But they don't seem to be nearly as attractive to big pharma these day's as “disease management” over a lifetime. However I understand some good work may be being done in Lymphoma and Melanoma so I'm hopeful. It could be helpful to those who have had too many immune suppressing drugs. ( sorry, I could not resist)

Be Well,

Bill

[Joe M]

[user=3]John McDonald[/user] wrote: 

[align=left]

Identification of bacteria on the surface of clinically infected and non-infected prosthetic hip joints removed during revision arthroplasties by 16S rRNA gene sequencing and by microbiological culture

[/align]

[align=left]

The researchers using PCR found thermal vent bacteria in failed protheses; as if the surgeons were replacing hips over Old Faithful or in a deep sea trench.

[/align]

[align=left]

I agree that there is a lot left to prove with AP or MP or Humira for that matter, but I find the 50% asymptomatic mycoplasma argument to be more polemic than truly satisfying.

[/align]

[align=left]

-john

[/align][align=left]

Hi John,

[/align][align=left]

Nice to hear from you.  Not to get too philosophical, but all organisms are of this earth, and that deep see trench of thermal vent bacteria may be “normal”.  What I'm trying to say is that maybe we are all filled with organisms that co-exist in a symbiotic relationship with our bodies.  Perhaps at both ends of the bell curve there are people whose genetic makeup does not allow for an asymptomatic existence.  The other side of the coin is the people with RA who test negative.  My gut tells me our testing is not sophisticated enough yet to identify all that is going on inside us.

[/align][align=left]regards,[/align][align=left]Joe

[/align]

[Joe M]

Bill, that was an excellent post.  Yes I agree that drug companies want to make a profit.  That is the nature of a free market society.  But who bears the ultimate responsibility?  Nobody is forced to buy biologics.  Thankfully another characteristic of a free market society is choice.  It is unfortunate that more people don't do some basic research when they fall ill.  AP is not a secret, most rheumatologists know about it, and I have not heard of one person on this board who could not find a doctor that would prescribe antibiotics.   Yes, sometimes it takes persistence, but in the end I really think that the patient bears the ultimate responsibility for their health care choices.

Yes, I am comparing the side effects of minocin with biologics.  Following is a partial list of side effects from minocycline (the more severe ones):

“Rare side effects with minocycline occur in less than 1 percent of people taking the drug. Because these side effects are so uncommon, it is difficult to tell whether they are caused by the medication or something else.   Some of these possible side effects include but are not limited to:  

• Allergic reaction [/*:3gdkwmt8]
• Hair loss (alopecia) [/*:3gdkwmt8]
• Liver toxicity [/*:3gdkwmt8]
• Irritation of the esophagus (esophagitis) [/*:3gdkwmt8]
• Irritation of the liver (hepatitis) [/*:3gdkwmt8]
• Ulcers of the esophagus [/*:3gdkwmt8]
• Increased pressure in the skull (intracranial hypertension) [/*:3gdkwmt8]
• Ringing ears (tinnitus) [/*:3gdkwmt8]
• Worsening of systemic lupus erythematosus symptoms (lupus or SLE for short) [/*:3gdkwmt8]
• Increased rate of red blood cell destruction (hemolytic anemia) [/*:3gdkwmt8]
• Reduced amount of platelets in the blood (thrombocytopenia) [/*:3gdkwmt8]
• Tongue swelling (glossitis) [/*:3gdkwmt8]
• Serious intestinal infection (enterocolitis) [/*:3gdkwmt8]
• Vaginal yeast infection.”[/*:3gdkwmt8]

The risk of serious infection from a biologic is around 2%.  Fatal infections are even more rare. 

I like to think that I paint a realistic picture of biologics.  Yes, every now and then a plane will crash.

Unchecked RA has the severest side effects of all. 

I've had the opportunity to interact with a lot of doctors recently.  Most are interested in one thing – helping patients get better. 

I have not heard of Bursinski but you have peaked my interest and I will read about him and his cancer treatment. 

[Rosey UK]

Hi Jenn

Wondefull to hear you are really well. I wanted to know what you had taken and how many per day?

I have just started prednisalone to give me some respite. I've stoped the gold and just taking doxy 100mg m-w-f since last October, but not had any results except my dry mouth isn't as dry and that's good, although eyes are still dry.

I wish you well have a great time!

best wishes Rosemary :roll-laugh:

 

[whaleharbor]

I must chime in here to this thread.  I think we are all missing something very specific and that is…

IF AP has worked for us, then shouldn't we try to personally further research into AP…that is to say…shouldn't we support RBF in its efforts to make this a more known and accepted treatment.

Are we fighting an uphill battle against big money (benevolent, malevolent or otherwise)?  Yes.  SO? 

If we have been helped by AP it doesn't mean that there aren't other helpful treatments.  Rather it simply means that we've been helped by AP.  Because of the “controversy” surrounding it…and because we likely found out about it because some kind soul made it known on the Internet or by word of mouth or by an article or something, do we not have to “pay it forward” and do the same.  Thank you veterans for staying around and supporting all of us newbies in our journey when you don't have to.

So if you agree with me…the real question is…what can we do individually and collectively to further the work of the RBF and the work of Dr. Brown?

— whaleharbor

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

[John McDonald]

…what can we do individually and collectively to further the work of the RBF and the work of Dr. Brown?

WH – on your way to resuming your life-interrupted, coach 2 or 3 other people through remission.

We can't save everybody and quite a few of those in need would be justifiably annoyed by our attempt. No point for that, we don't get riches in heaven for this. This isn't a religion and those who wish to perish as it were may do so with my, uh, blessing as it were. But coaching someone who wants AP through to remission is an amazing experience full of ups and downs and ultimately very satisfying. I absolutely love it when someone I have been coaching disappears back into their wonderful, full, rich life again. If each of us coaches 3 other people this will go on and on. Someday after a few generations of docs have retired and been replaced, the ACR will get it and will offer a new and improved AP as a first line of treatment. Maybe that will be some easier version of Trevor Marshall's MP. All we need is a few more geniuses to get on board. Meanwhile we patients can help one-on-one, listening, encouraging, sharing their fears, sharing our experience, weeping over the setbacks and in time sharing their joy. This is an extraordinary experience. In a little more time than it takes to have a baby we see people get their life back. They get busy and rejoin their world to mother their families and resume their careers. All it takes is our encouragement.

[Cheryl F]

[user=217]whaleharbor[/user] wrote:

So if you agree with me…the real question is…what can we do individually and collectively to further the work of the RBF and the work of Dr. Brown?

WH & Others:

RBF welcomes new volunteers.  You would be quite surprised at how few people are actually volunteering to help.  A year ago, we ran a post on the bulletin board every few weeks asking for volunteers. 

RBF has many opportunities that are put on the back burner or not initiated at all because there is no one to do the work. 

I would encourage anyone who may have a few hours a month to contact RBF at rbfcontact@roadback.org.  That is what I did.  Two years ago, in August when Jess was pretty much back to normal, I sent an email to this address.  A few weeks later  I was contacted by the person who was the RBF Volunteer Coordinator.  Then I spoke with RBF's President at the time, to get acquainted with the organization.  Basically, RBF just needs to know what might be a good fit.  Usually a good place to start is, as John said, mentoring someone, which you can do on this Bulletin Board.  That is how John was singled out all those years ago.  Making sure that people are directed to the information they need when they visit the bulletin board is a very important role for an RBF volunteer.  Also, we receive several requests for doctors each day, responding to these requests can be time consuming.  Monitoring the bulletin board is an important activity, which you all see that Maz puts alot of time and effort into. 

RBF is a peer to peer organization, we are not scientists or doctors, but just regular people who want to make sure that others afflicted with rheumatic illness have access to the Antibiotic Protocol treatment if they so choose. 

Please, anyone, let us know if you would like to work with us to help keep this information available.

Cheryl Ferguson, Volunteer

 

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