Looking for some clear answers...... | Arthritis Information

The scientists aren't the heroes in this situation - it's the lowly MD's in the field who are willing to risk attacks on their credibiity and integrity as they buck a system they have finally seen doesn't work.  These guys working to find the true cause and develop an effective cure are very few and far between.  Dr. Brown has been dead 20 years - and he was still mocked at the ACR this year.  Hmmmm.  These guys know.

And most of those scientists are no longer toiling for a cure.  What they are working for is drug that will control these diseases but not kill the patient and this way they have a controled revenue stream for the life of the patient.  Better drugs mean less dire ramifications (like lymphona for TNF inhibitors) so the patient lives longer and continues to take the drug and enriches the coffers of Big Pharma.  This article that Mushy posted ...did none of you catch that if you stop the drug the symptoms come back.  How in the world will any rational person say that it is 'effectively a cure'.  No - that's hype.  And we the patients pay the brunt when these medicines fail.  You are talking to a person who was hurt by some of these scientists in the past.  In the court documents it was shown that that not only did they know that the drug I was on could cause damage - they hid that knowledge so they could still market the drug.  Where are the saftey checks in that?  BTW - the FDA is useless - in those same court documents and in later FDA whistleblower testimony - not only did the FDA know - they ignored the evidence.  Maybe because 50% of the FDA's budget comes frim Big Pharma?  I got that figure out of the NY Times - and apparently they are slated to have Big Pharma contributions go up to 2/3 of their budget this year. 

WHO IS PROTECTING US?  Nobody.

Now, one of my friends husbands works for a well known drug co.  His job was to evaluate the safety of the studies done by little companies absorbed by the parent company.  Wanna guess what he found?  

So, you're worried about something that "might not work" - but I think we're hitching our wagon's to the wrong horse.  On this board alone I read over and over - Enbrel just stopped working, Remicade quit, I had to move up to... - my question is WHY?  If these drugs were doing what they were supposed to be doing, not just touted, why is its' efficacy always compromised?  Pharma says the disease progresses - but if you stopped the inflammation, if your numbers went down, if you're in remission - why does it progress?

Because you're not getting to the core problem - what is causing this disease to progress. 

How many people have posted here of a bacterial or viral infection just prior to the onslaught of their disease?  Do you think for a moment most rheumy's haven't heard the same story over and over from their patients in the past?  Yet nobody makes the connection.  And the only thing that seems to work - where you get off more and more drugs - is AP - the only thing even remotely saying it is addressing the main infection.  Hmmmmm.

AP says that these mycoplasma live in our white blood cells - the very cells designed to fight off bacterial and viral 'invaders'.  Two well known diseases that it's been shown beyond a doubt to work like that is TB and leprosy.  Take a look at the symptoms of those diseases.  Radically different.  Yet - in some ways very similar to some other AI diseases.  Could Scleraderma be a 'lesser' leprosy?  Could AI pneumonitis be a 'lesser' TB?  I'm probably not saying this right.  This is me typing out loud - but so many of these AI diseases have symptoms that overlap - like neuropathy and RA.  RA is not supposed to have neuropathy - but people post about it all the time.  Can you follow my logic here? These diseases are similar in that I think the infection occurs and the weakest gene kicks on first, then as it progresses we get another disease, and another, and so on and so on and so on...

You mention they found the cure for polio - that they did - and it was an infection.  Crippled kids gets everybodys knickers in a twist.  It's nobel.  Crippled old ladies - who the heck cares?  Think Hollywood wants to show old people throwing away crutches?  But if it's a cute little girl like Gaby in Little Miss Sunshine.  I'm saying I've seen enough posts on this board alone from women offered antidepressants by every doc they see even before they're diagnosed.  I really want to know how many men have to deal with this 'poop'.  I'm betting, from research I've read that shows doctors 'listen' more to men complaining of pain - it explains why men get diagnosed in an average of 3 months and a woman something like 2.4 years. 

You say if these drugs don't work you can to holistic later - but if AP is the correct theory - and you are suppressing your immune system and the beasties are breeding and taking up more residences in more and more systems and more white blood cells...you will have a longer road to get back to the orginal fork in the road. 

Before you got to Arthritis Insight there were a bunch of AP posts.  Alan says the efficacy of AP is the same as the biologics.  Do a search or hopefully Alan will jump in.  I know I've seen studies that pull the efficacy up to 85% but haven't been able to find it and post it because this move is going on and on and on and my files are a mess, my house is a mess, my cars need to go in the shop today or we won't be leaving Saturday morning...yada...yada...yada.  Even on Alans stats - my question is - why would one risk a biologic before starting with the safest med out there first? 

Then I kept seeing posts about diet influecing our diseases.  I've just started preliminary studies of this concept - but what little I've seen is amazing.  The foods that help are natural antibiotics or natural antivirals.  Hmmmm.  Ain't nature grand?  And knowing people who've used natural to get better - not just people I met on a BB somewhere - hmmmm - It can be done.  Koko is right.  It's finding the correct balance for what your body needs.  Most anti-inflam diets will show an inprovement within 2 weeks if it's the right one for you.  Most people take everything out and check for allergies.  And removing the allergen makes the biggest improvement.  Severe can go to mild RA almost immediately.  And then they can figure out what else to do to save their joints.

Hope this is coming off nice and perky - I am a slow typist and about 1/2 way thru hubby started yelling about hurrying it up!

Pip

So if you're going to look into anything - look into AP. 

Levlarry,

I'm a baaaaad driver.  LOL.  Love the analogy but don't get the logic.

Eeek!

Hubby coming!

Pip

pammy416, wild lingzhi is not "organic thing". It is a fungus sprouts out from dead tree trunks under condusive environment, climatic conditions and sunlight in the forest. Out of 10,000 tree trunks few can be found - so scarce!  Wild lingzhi never grow in Singapore, perhaps cultivated. 

There are probably abundant of cultivated lingzhi selling in herbal shops in many countries for years.  I believe in the States some cos. are cultivating them, like American ginseng.

meme, have you tried Wild Lingzhi? You have your opinion about the properties of Wild Lingzhi, but I know the reality and the effect of meds! The fact is that I do not use any single med, no pain, no flare, no walking stick, do not have to go under the knife, run, climb without any problem. THAT IS REALLY GETTING BACK TO LIFE. I do not take wild lingzhi like meds. everyday!!!! You should focus more on your condition rather than comment on wild lingzhi you do not have any single experience. 

meme, you have ra, pa and oa and the meds help you alot and the meds do work! Hopefully you do not have heart/kidney or diabetes problems. Because meds can cause such problems too!

In my past experience with meds, I could not figure out at various levels why meds and injections had been losing its effectiveness. Often I had fear, doubt, pain and wondered about the future aggressive development of the disease. When the duration of attack subsided, getting back to normal routines at best temporary.

So back to basic - herbs, natural foods simply work wonderfully and effectively!! No worry, clean, pure natural foods that make life wonderful!

Trust me, I do NOT want to screw my body with these chemicals but what alternative do I have that can give me a chance at saving my body? Anti Inf foods can't be the ONLY solution. If it is, I am sure there would be NUMEROUS people setting up shop to help people AND still profit easily. There are millions affected by RA. If there were a significantly helpful solution to help people with this disease, NO ONE could hold that info back not even "Big Pharma".

I guess what I am saying is: It would be common knowledge that foods can help stop RA progression if it were true. No doctor, med student, scientist, corporation or anyone can stop the knowledge from spreading. Especially when it comes to someones livelyhood.

Please provide me with some info/web site that I can study ant-inf foods and how they STOP OR SLOW the PROGRESSION of RA. I would be quite interested. I have found nothing of the sort anywhere.

I am new to this board so forgive me for asking such dumb questions.

1) What is AP?

2)Is the inflammation doing the damage to my joints or the disease itself?

3)If you can cut inflammation down, will that stop future deformities/RA problems? 

I am so confused right now it is not even funny. I want to trust the doctors but I also do not want to be dependent on the chemical machine.

If i could just change my diet to help with my disease I WOULD DO IT IN A MINUTE. But I have seen nothing of the sort. Where is the evidence?

One last thing. If I can take these meds to help with my disease and put it into remission what is wrong with that? Just because it's a medicine does not make it bad. Like I said, if not for some of these western medicines MANY MANY MANY people would die from so many things. Just think how our Life expectancy has increased over the last hundred years or so. I think we can attribute most of that to western medicine.

I am not trying to debate here. I am looking for CLEAR answers as it says in my header.

anyone willing to provide clears answers...Im all ears.

AP is antibiotic protocal. Some people are finding some success with treating RA with minocycline (or its derivitives).

The inflammation IS the disease.  The inflammtion is in the synovial lining of the joints.  The synovium is the fluid that allows the joints to move smoothly.  The inflammtion is caused by a malfunctioning immune system.  What causes the immune system to malfunction is the ,000 question.

You control or prevent the inflammtion and yes it should prevent or significently reduce the resulting damage

pammy416, then explore and find them in the States' forests. Many Asian countries imported American Gingseng. American Gingseng is also organic "anything that grows is organic". So you are saying American Gingseng can export to other countries but Chinese Gingseng cannot go to American i.e. imbalance of trade. 

I'm only saying that bringing things in through the airport can sometimes cause problems with customs and quarantine. 

I do know that NOTHING organic is allowed through Australian Customs and Quarantine and they have a LOT of problems with people bringing in Eastern herbs and medicines that are not quality controlled. 

Again I'm only suggesting that doing things through the proper channels is a wise idea. 

Buckeye is Minocycline the only antibiotic used in AP?

Zeek:  to answer a couple of your questions...

You won't find anything concrete about diet 'curing' RA.  On the otherhand many people swear by watching their diet, they know that certain foods affect their RA.  An elimination diet is a start and you can move on from there by adding things in one at a time over a couple of days for each item.  I think what is MOST important is that you have a balanced diet and a healthful diet.

I was undiagnosed for about 7 years and the damage that was done was irreparable.  I now have 2 total knee replacements.  That damage happened in less than 3 years.  I am now on a tasty chemical cocktail and am experiencing much less pain and a much slowed down attack of this disease.  I won't say I'm in remission, I'm still working towards it, but I am much better since starting the meds.

I'm sorry but I'm not into conspiracy theories, I don't think that the pharmacy companies are out to get the world addicted to their products or use us as guinea pigs.  I do very much appreciate modern medicine, it has saved MY life several times.  My motto is 'if it works, use it'.

Hey again!

Zeekman - I'm coming from a completely different place than most people here - and baby, I hear you.  Up until March of last year I still believed totally in western medicine.  Even tho I've had one medical screw up after another, year after year, for one thing or another.  Even tho I had a stroke caused by medicine.  I just figured it was my doctor's fault.  At no time did I ever question our system.  It's the best in the world, right?  Until they told me I had a disease that would eventually maim me.  The doc told me my body had started attacking itself.  And I just couldn't believe it.  No way!  And I kept telling them - no - this is from an abscessed tooth and they just patted me on my head.  I don't know, maybe I snapped or something, but I said these guys are wrong and just ran with it. 

In a way I'm about as blessed as one can be.  Getting as sick as I did, as fast as I did (severe early onset was the diagnosis) allowed me hours to sit in front of a computer and try to learn medical lingo in 2 months.  I read Pub Med and Google Scholar until my head spun.  And all I looked for was 'infection' 'antibiotics' and 'antivirals'.  Because the med they wanted to give me was plaquenil, and as I told a friend, if they would have said any other med I probably would have taken it and not questioned.  But they wanted a base line vision test - and I said no.  Period.  I figured their had to be a another way. 

I started with reputable sites.  If you've been searching you've seen all the sites devoted to fleecing us sick people and selling us unsubstantiated hope.  All for about .95.  I truly believe there is a God and these guys deserve their own ring in Dante's Inferno for some of the scams I've come across that take advantage of sick people.  Piece of advice - if there is a distribution system that remotely looks like a paramid scheme - it's a scam. 

None the less I kept at it and tried to find patterns and repeated research that backed up whatever I read.  This all takes time - and when first diagnosed we're not exactly calm.  I think I've only recently come to the realization of just what this disease can mean to me and my family.  And it's been a year. 

KoKo is right - an anti-inflam diet can do the job.  But it's hard - really hard.  I know people that have done it.  Think about it - to go this route you will have to give up a lot of things you take for granted.  Big Macs.  Cereal.  The list is endless.  When I was first diagnosed you have no idea the relief I felt when trying a gluten free diet and it didn't work for me.  I've had a bagel every morning for decades.  But if it would have worked - the bagels would have gone.  What are you willing to do to get better?  Most people are not willing to give up the stuff they are allergic to, or that effects them.  As to gluten, there are now great bagels and a ton of info at Celiac.com (.org?) about how to get it out of your diet.  And the people that do say once they started it's not bad and the selections are good.  But again, how many people are willing to go this route and take foods out, add foods back in, etc. until they find out what the problem is?  Not many.  And because it's so hard people don't do it.  Isn't it a hell of a lot easier to take a TNF blocker?  See what I mean?

Anti-inflamm foods aren't the only solution - it is one solution.  Another is herb and minerals - chronically sick people are almost always low on potassium, magnesium etc.  Look at your blood tests - they usually run these tests and it shows up in the beginning. 

There was a post on the Roadback about 6 months ago - one of the people had posted 'where would we be without the Internet" about our ability to come together and help each other on AP.  One of the responses was "we'd be dead".  And I thought about it.  As the Internet spread, any Yahoo can put up a website, but others can find others to help them with these diseases.  THIS is how we're getting around Big Pharma.  This is how the knowledge is spreading.  I lurked on that BB for months because I couldn't believe what I was seeing - and looking for patterns.  Those guys are all volunteers.  They don't get paid.  They don't sell anything. And without them I wouldn't have known about AP.   I sure as hell wouldn't have heard about it from my rheumy.  Even tho he knew I kept saying it was an infection and at that point wanted anti-virals.  (Did I mention I was foaming at the mouth in fear from this diagnosis?)  But when my husband and I came in with the book and asked for Minocin, he took one look at it and said, "Well, it's better than any medicine I could give you".  Really, said my hubby when we were in the hall with the script in hand, then why the hell didn't you offer it to us first?

If you want to study about AP - go to www.roadback.org. 

You can run a search there on 'anti-inflamatory foods' and such.  There have been a ton of posts about herbs and natural methods of healing as well.  Without these people I would have never known that milk thistle helps clean the liver and I started using it - 2 1/2 weeks later my liver function tests showed my elevated enzymes had returned to normal after 3 tests being elevated.  Who would have thunk it?  Not me.  I didn't believe in all that crunchy, hippy, counter culture stuff.  I sure as heck do now. 

AP is the antibiotic protocol - developed by Dr. Thomas MacPherson Brown.  You can get the book "The New Arthritis Breakthrough" by Henry Scammell outlining Dr. Brown's work.  You can read it in a day and can get it on Amazon or at Borders.  This will stop the progression of your disease.  It's not a cake walk at first - you have microbes to kill - but look at the posts here and on the RB - we get our lives back.  Totally back.  I know I did.

AP'er believe the inflammation is a symptom of your body trying to hit a microbe with the gift of molecular mimicry.  Here's a link to a good example of what we think is going on.  I particularly like the hunting metaphor.    http://www.geocities.com/SoHo/Gallery/6412/stealth.htm

We believe the inflammation is a symptom of the disease - not the disease itself.  I'm not sure - but I think the 'your body is attacking itself crowd' thinks it's the disease. 

Yes, that's how I interpret all the studies I've seen - you need to cut the inflammation so the body doesn't get damaged.  We AP'ers think we need to cut the inflammation so the ABX can get to the targeted microbes.  This is the core of my problem with the biologics and most of the traditional meds.  If you cut the inflammation and the infection is still present - great! the patient feels better (no pain) but the damn things are still in the body waiting for a chance to regroup.  The regular meds just remove the bodies reaction to the infection - not the infection.  That inflammation is a warning from your body - there is something wrong and it's trying to fix it, kill it, whatever.  Take away the inflammation by lowering/suppressing the bodies reaction to the infection...see what I mean? - that's just not right.  But again, most American's want instant gratification - no pain NOW - not a lot of people are willing to go thru a herx (reaction to the die off of the microbes) that can last months.  I was willing to give it a year to show me it was working.  And I lucked out because I was newly diagnosed and...I just lucked out.  What I never understood was...if MTX can take 8 weeks to kick in and the same for Plaquenil - what's the big deal for a couple more months on Antibiotics?

I see no problem with using any drug to put these diseases into remission.  If baying at the moon would work you'd see me on my roof every night.  My problem is two-fold.  1) There have been a couple of studies released in the last year or two that show starting early with MTX and then a second study showing starting early with MTX and Enbrel can lead to a permanent remission.  I question the legitamacy of both studies because the second one had disclosure listed at the bottom and the researcher had connections to Amgen - the maker of Enbrel.  What my now suspicious little brain came up with is the ACR has noticed how many people are requesting AP or alternative therapies (wonderful article in the LA Times on that) so they have made a move to get people into the revenue stream as early as possible.  You do not have to believe it - but you have not had 10 doctors tell you AP does not work when it clearly does for me - and I've recently been ice skating because of AP.  (To be fair the last 3 docs are willing to work with me but the first 7 were boneheads). 

My second problem with the use of the traditional meds is the use of the term 'remission'.  There was a post here about a month or two back and the question was "what does remission mean to you?"  As an outsider it was eye opening to see post after post of 'my numbers are back to normal but I feel awful'.  Page back until you can find it.  I am nowhere near remission, in fact, my RF spiked back up to 414, but I feel great.  Why is that?  The DMARD effect?  All I know is once people on AP get past the herx thing in the beginning - and you will if you stick with it long enough - they have no pain.  But the traditional med people have good numbers but feel bad?  How is that?  This is not to say it works that way for everybody.  In fact, there was a post lately that said she got her life back on the traditionals - but - there were enough in that one post to make me glad I chose the path I did.  Does that make sense?  Especially since Predisone made me worse and my rheumy said most of the traditionals don't work for my specific disease anyway.

I also agree with you that just because it's a medicine does not make it bad.  Heck, Minocin is a medicine and it saved my life!  I'm just saying we need to take as good care of our bodies as we can.  AP is the easiest medicine on the body of all the DMARD's.  Look up the side effect profiles in the PDR yourself.  Lets say I don't rotate my antibiotics and I have some sort of weird reaction to AP around year 7 (I noticed that pattern on the Roadback) - well - I just went 7 years on the lowest possible medicine out there.  Then I can still do MTX.  Then Enbrel.  If Enbrel has a greater chance for lymphoma and I get lymphoma (remember, my history - if it can go wrong, it will, with meds and doctors) at year 10 - well I've just made it 17 years instead of just the 10 because I jumped right on Enbrel. 

To those of you on Enbrel - I am not trying to upset you - all I'm trying to say is what my logic is telling me to do in my case and in my experience. 

It's the same with the healthy diet.  How many of us knew we were not eating right before we got sick?  How many of us knew we should be eating more veggies and not so much fast food?  Our bodies are well oiled machines - we need to give it the proper fuel - the fuel it needs to help itself heal.  Find the right diet for your metabolic type (don't pay a gazillion dollars for the tapes - get the book).  Find out what your allergies are - and I'd bet you have food allergies - we almost all do.  Find out what you can do to help your body build glutathione and what you can do to raise those low minerals. 

You, and we all, can beat this disease.  We just have to find the right combo so our bodies will do it's job again. 

Pip

Katie,

inflammation in the joints does not always mean you will see visible swelling.  A sensitive examiner should be able to feel it but you don't have to see it for it to be there

My theory is that we don't have a choice, we MUST take these super drugs. diet is imp, as some people are allergic to tomatoes (not just because of RA) potatoes, bell peppers and egg plant...those are the nightshade family) also, dairy products bother some people. Foods are hard to 'give up' and cause all sorts of special treatment (especially with children...I can'[t eat ice cream!!, I heard my little son say, NO I said as he was allergic to dairy...it is hard) the MTX didn't change my allergic reaction to the nightshades, so I had to go on more of it, to stop the flare after eating tomatoes/bell peppers one summer. They looked sooooo good in the farmer's veggie stands!! My doc says no it didn't matter but my flare came right after eating them!!?? i just gave them up....good luck sorting this all out, it isn't fun but for sure ...worth the effort!! Hurting less

Hurts -

Have you looked into Leaky Gut Syndrome?  Nightshades are a common reactor for that. 

Pip

what are night shades?

Hurts - I've a choice. I MUST dumped super drugs, a decision I made almost 20 years ago

Why?

1. Super drugs became ineffective.

2. Disease progressed to such stage that each flare I had to be bedridden for months.

3. I expored and found superb miracle herb WILD LINGZHI. Why Wild Lingzhi? It was rated #1 Superb Herb in famous Chinese historical medica book over 3,000 years ago and known to the Japaness also that period. It used to treat chronic diseases and also termed as fairy herb.

4. Food allergy is your reasoning but to me "bad" food definately can cause flare and quicken the progress of the disease.

5. I strongly believe super meds allergy - at best only control the disease temporarily on one hand, on the other disease emerges more aggressive and chronic once the power of drugs control melted.

6. Super meds allergy also has numerous side effects like heart, kidney, liver problems as well as likely cause of diabetes. This conclusion was derived after finding out from arthritics who used drugs for a period of time like 10 years and above. Many have 3 in 1 problem and have to take different drugs/day usually for heart, arthritis, and diabetes, WOW, WOW, WOW.  A cycle of concultation with specialist, drugs not effective after sometime, disease causing pain and suffering, adjusting to new drugs. It goes on and on!

Simple people like me take humble herbs and natural food. Why so complicated

You can come out with all the scientific evidences to show CANNOT, but the result rules them all.  I DID IT

I HAVE STRONG BELIEF IN APPROPRIATE SUPERB HERB/S AND NATURAL FOOD. I HAVE DETERMINATION AND DISCIPLINE TO OVERCOME THE DISEASE AND NATURE BACK GRADUALLY MY BODY TO HEALTHY LEVEL.