Met with a new RA doctor (Molly Burgoyne) on friday see was aware of Road Back Med treatment and has included it in a limited use with some our her patients however she advised the new Bio meds such as Remicade, Humira and such are far better for RA. I was very impressed she took X-rays, and order lots of blood work when I was only there for a second opinion I think I will have her be my new RA Doctor. So far its been eleven days since my second Remicade treatment have seen no improvement in fact tenderness, redness and swelling in joints appears be be a little worse. Still taking MTX, Plq, Pred, Folic and others. Bearbeall
welcome to the forum, bill, continued success with your new RD, it is so important to finally get a dr. you can talk to and they listen...
gentle hugs &n bsp; rose
Billy
I hope the remicade kicks in soon and you start to feel better.
As far as the Road Back its new to me but then again most things are. I was only diagnosed about 1.5 yrs ago.
Jay
Billy, good luck with the new doctor and the medicine!
I just sent you a PM for some advice on physicians--I'm a fellow Marylander.
Best,
Christina
Well, I am so glad you found a doc you like. You'll find something that works, it just takes a while sometimes. Thanks for the update, we're all rooting for you here
Linda
SORRY FOR ANY TYPE O'sssssssss in my last posting typing with RA sucks and I was a bad typist before RA. BealbeallOK, I was a little offended by your typo's, but you are forgiven. Just don't do it again.
And please excuse my many typo's and misspellings.
Billy, I didn't feel any difference until between my 5th and 6th infusion. Hang in there. Patience is our friend.......can't believe I just said that but I guess it's true. I'm strange, I love the typos. Always makes for an interesting read! LindyI hope Karin jumps in here - there are a few studies that say AP is as effective as the biologics but...don't know which one. Alan knows too.
Alan, if you're reading this - I found my files!
Pip
Bill/Bear:
Well, the reason most traditional doctors believe that biologics work better, is because in some people they work much faster. AP is not a quick fix. For some, it takes months to years to put a patient into remission. I'd say the average is 6 months to 1 year to respond significantly to AP. Most doctors don't want to give AP that long of a chance to see if it really does work. But if you thought you had an infectious cause that you could get rid of, wouldn't you wait?
However, I know many patients on biologics have stated that their doctor recommends giving the biologics 3-4 months to kick in before becoming effective. So maybe the time difference is not as great as we think.
The main difference between AP and biologics, is the theory behind the mechanism of the drugs on the disease activity. AP theory says that we are going after an infectious pathogen, and if one rids the body of that, the immune system will calm down. (And if one believes this theory, really why would he/she want to slow down his/her immune system? They really should want it strong and fighting to kill the mycobacteria causing the infection).
Autoimmune theory says that our immune systems have decided to attack our joints and organs, for no known reason-- we just have an immune system gone awry.
If you believe in the infectious theory, it might be worth the wait to get to the root cause of your disease. If you believe in the autoimmune theory, than it is probably best to slow down your immune system with immune suppressors such as biologics, MTX, and steroids. It's really as simple as that.
I believe I have an infection. It is just too coincidental how my RA came on, just had a baby (immune system down so as not to reject the fetus and lack of sleep), had two root canals, then bam-- I had debilitating RA. I also have a history of Strep, Chlamydia Pneumonia (different than the STD), Parvo virus, tick bites, etc. AND, I have responded too well to antibiotics not to believe that I, personally, must have an infectious cause.
AP is not quick and is not for the faint of heart-- I agree with your doctor there. But, really, she didn't go deep enough into the theory behind the two treatments. And, honestly, no doctor knows the cause of RA. There is still no PROVEN cause or cure for RA. So, really, all we have is theories right now. Pick the theory you believe based on your own research and your own personal case of RA.
I really pray that your treatment plan works well and that you can make it to retirement!
Take care ~Karin
PS: Pip, I do have studies that compare AB to MTX, Plaquenil, and others, but unfortunately, not to the biologics (ie: proteins like Remicade, Enbrel, Humira). I wish those studies had taken place, but unfortunately, I don't think they have. Please let me know if I am wrong!
Oh, you are probably not wrong. I just mixed stuff up in my head. Remember when Alan was comparing the studies? I know I've seen something on AP that really brings the efficacy numbers up but I just found my files and have them half unpacked and still haven't found it. Something in that post from months ago was probably what I was remembering. I was saying that when I was trying to decide if I should try AP, something I saw made me think it had something like a 90% chance of working. And my thought process was even if I got 50-50 shot it would work for me I'd still try it. Alan then said something like AP works the same as the biologics. I'll try to find that post. It was when I was about to move and couldn't answer his questions.
Pip
Thank you all so much this info should help me in the future with my RA Doctor I think she seems the type of doctor that is willing to try what ever it takes to help her patients. Bearbeall Their facts are all wrong. AP can't touch the biologicals in any way shapeImproved yes, normal no. Nothing works that well for even half of us.
Although I have to say I did have a remission that lasted almost 4 years. I don't have a clue what helped me slowly become almost well or what made me sink back into this RA mess.
One theory says an infection starts it, and the body still thinks the infection is present so it keeps after our own tissues. I think there is more than one disease that looks like a set of symptoms called RA.
BeeBee/Anna
Don't they miss you on AF?
The link you posted does not work. A Google search does not pull up anything remotely like you have quoted. If anybody can find me a working link to whatever she posted, I'd appreciate it; looks like commentary but nothing from a study. But I suspect she hodge-podged it together. All I can find via Google is a sentence or two.
Anna, I am getting tired of you. Period. You may have been told you cannot be traced via the web. That is NOT true. I consider that you are moving into stalker territory what with the constant name changes/trolling. Others share my opinion.
Anna - why don't you post on your experiences with the biologicals? You've went thru how many so far? And your ankles? They are seriously eroded? You were fused? Or was it replaced?
And while you are at it - why don't you post your experiences with AP. Oh, sorry, I forgot. You never did AP.
Funny thing. You are almost out of options on the biologic's, right? You'll eventually end up on AP. My AP doc tells me that by the time most patients get to him they are a wreck. Slowly they 'rebuild' the patient. And they end up the most vehement PRO-APer out there. I'm just waiting, sweetie. Eventually, you'll have no choice, you'll be on MY team.
I, on the other hand, am nearing remission on AP. A PAIN FREE remission, I'd like to add. Everything in my tests are in the normal range again except my RF. That should be within the next couple of months. When was the last time you went ice skating? How about boogie boarding? Dancing? I dance every day with my daughter.
The proof is in the pudding.
Pip
P.S. Bear - if you got an email telling you 'you'll end up in a wheelchair' - that's Anna. Never did AP. PM the other APers - they'll tell you the truth.
P.S. Anna - I'm trying to help APers's and non-APers alike. You just try to scare people.
BeeBee - Could you please direct me to the source of your information that 'AP can't touch the biologicals in any way shape or form'.
I started AP a little over a month ago, and within the first couple of weeks, I could feel it working by the die off I have been experiencing. I am no where near back to normal, but in all honesty, I don't know many people that have achieved 'almost back to normal' status within three weeks of starting a TNF. Again, can you point me to the source of that information?
Let me know if you're interested in learning more about AP, as I can direct you to quite a few articles that support it's efficacy and success.
Pip - Your mailbox is full! Okay, I swore I wouldn't post here again but here goes. I've used Enbrel over 8 years now and I had an almost immediate response to it. I suffer no significant side effects and have been able to reduce the amount of MTX I take. Now I don't claim that my experience is the standard. It just is what it is.Hi Sarah! Good for you!
Gale - cleared it out! Thanks for telling me!
Pip
not trying to take sides here but I think this is the correct link...the quote is accurate. It's actually a pretty good article and I think accurately states the typical RD position on AP therapy.
http://rheumatoidarthritis.researchtoday.net/about-rheumatoi darthritis.htm
Alan
I think I'll stay out of the middle, and play a little music instead. I hope everyone finds what works best for them and finds some relief from this disease!
Alan
Yes, Alan, I agree gloating is not my USUAL response - however, this is not the USUAL poster. This person, who has NEVER been on AP, sends emails to newbies (in the past - just assuming it's her modus operendi) telling them they will be in a wheelchair if they try AP. This, from a person who has FAILED at most of the biologics in her own words. Frankly, she's almost out of options - she'll make a good convert to AP.
Nobody disputes the Mino has immunomodulatory effects (as well as antibacterial) in higher dosing; hence the Harvard Protocol. This 'theory' does not take into account Zith which does not have immunological properties. Nor do the pennicillian families which is used in high strep titres. Why do people continue to get better when on those antibiotics?
And why is one biotech spending a ton of money developing a Mino without the antibacterial effects? Seems some entity wants desperately to prove we are wrong. And if we are - fine, now we'll have a patent drug without all the side effects that the biologics have. What rheumy will resist prescribing THAT one. LOL
My point has always been - if it takes 3 - 4 months for the biologics to 'kick in' which I've seen on post after post here on AI - what's the difference taking a month or 2 more on AP - just to be 'sure'. Another thing I've learned on AI - the people on AP tend to respond quicker than the people on the Roadback. Could it be by the time they find the Roadback they were really bad off after suppressing their immune system time and again with all the biologics? Here, the people starting AP are mostly the newly diagnosed so they need less time to return to health.
BTW - do you have that post where you said the efficacy of the biologics vs. AP?
Pip
[Quote=Alan]"Interrupting this process as early as possible with an effective DMARD (such as methotrexate) appears to improve the outcome from the RA for years afterwards. [/QUOTE]
For those that may not be aware, Minocycline is an ACR approved DMARD.
Ok - that is the strangest 'paper' I have ever seen cited by anybody in the AP controversy.
The content of the page is from Wikipedia. Here is the original (not edited) version.
http://en.wikipedia.org/wiki/Rheumatoid_arthritis
Which is not nearly as inflammatory as the 'paper' BeeBee cited.
Both links have some serious questions tho - why are the quoting the Roadback in the citations? The Roadback is not a respected medical journal. And for the theory of AP? Why, with the studies available in the US is the only other AP study quoted an obscure animal study of antibiotics from India?
Why in the first link offered is O'dell work cite in the wrong place? Very sloppy work.
Why is this website unsearchable? What do they call it? Astro turf?
Pip
Also, Wikipedia is NOT a reliable source, anyone (even you and me) can add to or edit information on that site.
I also think that this is a strange comment:
"If rheumatoid arthritis was caused by a bacterial infection then we would expect that a treatment that lowered a patient's resistance to infection would make the disease much worse. Tumor necrosis factor inhibitors are a class of drugs that markedly reduce resistance to bacterial infection but are very effective in treating RA. "
That is just plain ridiculous. They are saying that because TNF inhibitors (which suppress a portion of the immune system) work, that that disproves the infection theory. Shutting down a portion of the immune system will lessen inflammation and the immune response. Of course, that will make the patient feel better. That does not mean that the infection is not raging on behind the scenes. It just means that the symptoms are being treated.
JMO. Take care! ~Karin :)
The post is not from Wikipedia, it is from the official ra doctor magazine, a very reliable source.
http://rheumatoidarthritis.researchtoday.net/about-rheumatoi darthritis.htm
I have not failed at most of the TNF's and I have plenty of options left. The two I have used worked within 2 weeks. 2 Weeks to being a normal person.
Its just a bunch of lies. Which is why I post. Why do you think they post all the BS about the pharm co's. I guess they don't take any pills?
You send e-mails trying to capture newbies to your cult. Shame on you.
Yes I send newbies emails - I don't bash drugs I was NEVER on like the biologics. That is the point.
And this is because I'm asking people to open their eyes with my reputable articles from reptuable sources asking to open a discussion on advertising? What the hell are you afraid of?
Finally - the link you posted is NOT an official RA magazine - it is ASTRO TURF. Anna, you are exactly the reason I am posting the articles I'm posting - because you have to learn to recognize PR.
Pip
"They are saying that because TNF inhibitors (which suppress a portion of the immune system) work, that that disproves the infection theory. Shutting down a portion of the immune system will lessen inflammation and the immune response. Of course, that will make the patient feel betterThat does not mean that the infection is not raging on behind the scenes. It just means that the symptoms are being treated. "
Karin... to me that thought is not logical. The AP theory is that infection is the sole cause of RA. Therefore the immune response has nothing to do with the inflammation. The inflammtion is caused entirely by the infectious probelms. You can't have it both ways either the inflammaiton is caused by an overactive immune system or the infection.
If you slow down the normal immune system in a person with a systemic infection the infection gets worse no and if or buts about it. THe symptoms worsen, you feel worse, and your labs deterioate. A normal immune response does not make you feel worse your health improves as infection is controlled.
I do believe there is a place for AP in the treatment of RA. I think its worth a shot in acure, rapid onset; or onset directly after a known bacterial infection.; or in people who can't do the biologics for some reason. I also believe it needs a helluva lot more research in large scale head to head against the biologics to truly understand its value. AP will never gain mainstream approval based on emotional testimonials from the "cult" (Pip's name not mine-lol). They need the hardcore recent studies against the heavy duty drugs
LOL Buckeye!
Sweetie,
What did you mean about the systemic yeast and normal immune response?
Pip
I didn't say anything about yeast. I meant that if the immune system is performing correctly then suppressing it would in turn allow any infection , most notebly systemic type infection as the AP theory assumes to prolifirate thus increasing disease activity.
I interperted the study quoted as saying there is no statisical difference in the response between high dose doxy and low dose doxy and that the response of doxy + MTX is better than that of MTX alone. However they were unable to determine what factor (ie immune suppression or bacterial fighting) caused the difference). Just as important is that study failed to do a comparson between doxy alone vs mtx alone. It also did not compart MTX and any other DMARD vs the MTX doxy combo. Biologics were not addressed at all
"They are saying that because TNF inhibitors (which suppress a portion of the immune system) work, that that disproves the infection theory. Shutting down a portion of the immune system will lessen inflammation and the immune response. Of course, that will make the patient feel betterThat does not mean that the infection is not raging on behind the scenes. It just means that the symptoms are being treated. "
Karin... to me that thought is not logical. The AP theory is that infection is the sole cause of RA. Therefore the immune response has nothing to do with the inflammation. The inflammtion is caused entirely by the infectious probelms. You can't have it both ways either the inflammaiton is caused by an overactive immune system or the infection.
If you slow down the normal immune system in a person with a systemic infection the infection gets worse no and if or buts about it. THe symptoms worsen, you feel worse, and your labs deterioate. A normal immune response does not make you feel worse your health improves as infection is controlled.
I do believe there is a place for AP in the treatment of RA. I think its worth a shot in acure, rapid onset; or onset directly after a known bacterial infection.; or in people who can't do the biologics for some reason. I also believe it needs a helluva lot more research in large scale head to head against the biologics to truly understand its value. AP will never gain mainstream approval based on emotional testimonials from the "cult" (Pip's name not mine-lol). They need the hardcore recent studies against the heavy duty drugs
[/QUOTE]
Buckeye: Maybe you misunderstood my statement. Let me try again. And, yes, you can have an infection, and an immune response. For example, if you have a strep throat infection, it causes a swollen, red, sore throat, fever, etc. That is the immune system's response to the infection. If you shut down the immune response, the patient will feel better because he will not have the swollen, red throat and fever. But that does not mean the streptococcal bacteria is gone. Just the opposite, it is able to replicate even faster with no (or lowered) immune system to protect the body. SO basically I really believe TNF inhibitors work on the symptoms, by shutting down the immune response. That does NOT mean the infection is not raging on.
I'm not sure where you got your information about AP theory, but it has everything to do with the immune response! The immune response is the body's way of fighting an infection. If you shut that down, the patient WILL feel better, because the inflammation will go down (inflammation is the immune system response). But that is just treating the symptoms. If there is an infection, one needs to get to the root cause of the disease by killing microbes.
Did I explain my stance better? Does that make more sense?
Take care, Buckeye! :) ~Karin
By the way. I also think the immune system is very smart and will eventually learn to work its way around immune suppressors/biologics. That is why I believe the immunosuppressors/biologics sometimes do not work for very long. The immune system learns to work its way around the block. And if the infection is raging on behind the scenes-- even more reason why the pain/swelling/immune response comes on stronger after one medication ceases to work-- The infection has GROWN.
Take care, Karin
The full paragraph of the quote aanart/bee bee posted originally came from Wikipedia and read like this (the italics are mine):Thomas McPherson Brown along with other researchers and patient groups believe that it can be demonstrated that RA is caused by a bacterial infection, in particular mycoplasma that localizes to joints.[10]
Thomas McPherson Brown used tetracycline antibiotics
to treat rheumatoid arthritis, and concluded that improvement in
symptoms was evidence that the antibiotic must be killing a bacterium
that caused the arthritis. The tetracycline antibiotics that he used,
however also "exhibit immunomodulatory properties, which may contribute significantly to their beneficial effects in rheumatoid arthritis".[11]
In other words, the same drug can both kill bacteria and suppress the
immune system, and the latter may be responsible for its benefits in
rheumatoid arthritis. That said, there are thousands of documented
cases of remission of RA and other related auto-immune diseases using
antibiotics on file at the National Hospital in Washington, D.C., where
Dr. Brown practiced, and many other reports from rheumatologists
worldwide that judicious use of minocycline, sometimes combined with clindamycin,
along with diet change, nutritional supplements, and vigorous exercise,
and various other immune-strengthening alternative therapies, such as acupuncture,
hyperbaric oxygen, and infra-red sauna, can retard or remit the
disease. Tumor necrosis factor inhibitors are a class of drugs that
markedly reduce resistance to certain types of bacterial infection
(including the mycobacteria that were hypothesised to be to blame for
rheumatoid arthritis by McPherson Brown). They are, however very
effective in treating RA. In fact, they are one of the most effective
treatments for rheumatoid arthritis in widespread use. If rheumatoid
arthritis were caused by bacteria, we would expect the disease to
worsen, not improve, when tumour necrosis factor inhibitors are used,
contrary to what is widely observed. The bacteria/antibiotic hypothesis
therefore has very little support amongst the majority of
rheumatologists and researchers, but is seen by a small number of
integrative physicians and caregivers as part of the web of factors
that produce the disease. Several large, long-term studies in the last
ten years, both in the United States and Europe, have convinced these
integrative healers that antibiotics have an important role to play in
the armamentarium of weapons against RA, and an evolved form of the
antibiotic protocol originally devised by Dr. Brown at the National
Hospital has now been officially sanctioned as a DMARD
(disease-modifying anti-rheumatic drug) by the AMA and recognized by
the Arthritis Foundation."
Personally, when I have read the part about TNF inhibitors disproving
the bacterial cause theory of RA it didn't make any sense. How do you
know the disease isn't getting worse while you're inhibiting the system
with immune suppressants? My RD and many other sources have told me
that when RA drugs stop working the disease usually comes back worse
than it was. To me that suggests the disease is still progressing, even
as we're suppressing the symptoms.
Also, does it really matter what theory is correct as long as the treatment works. No one disputes:
"there are thousands of documented
cases of remission of RA and other related auto-immune diseases using
antibiotics on file at the National Hospital in Washington, D.C., where
Dr. Brown practiced, and many other reports from rheumatologists
worldwide that judicious use of minocycline, sometimes combined with clindamycin,
along with diet change, nutritional supplements, and vigorous exercise,
and various other immune-strengthening alternative therapies, such as acupuncture,
hyperbaric oxygen, and infra-red sauna, can retard or remit the
disease."
(actually, that makes it sound like you have to do all the booster
treatments when in reality you can get by with just a few basic
changes). So even if the theory is wrong the treatment still works,
which is ultimately what I and presumably most arthritics care about.
As far as biologics, it's great they're there and are an option for
some people. However, no one knows the long term side effects of
biologics or how long they can be expected to work, and also for many
people they are simply unaffordable. The long term effect of
tetracycline antibiotics are fairly well known, the drugs are
affordable, and there are known cases of people who have controlled
their RA with them for decades. Also, I think on this forum we have to
ask ourselves "why does any discussion of AP always seem to turn into
AP vs. Biologics?" It seems some people, for whatever their persoanl
agenda, can't legitimately discredit AP so they twist the debate into
support for AP=being against biologics. That is just ridiculaous on so
many levels. We may as well have the smae discussion about any of our
treatments. If you're using mtx it doesn't mean you're against
prednisone.
I note BearBeall's doctor first said there was not enough known aout
AP to use it, then changed that later to biologics work better (thereby
inadvertantly admitting they knew AP works and even to what extent).
For someone to say that biologics make AP obsolete is simple hysteria.
If that "logic" were solid then mtx, plaquenil, imuran and a host of
other medications would also be obsolete and as we all know they are
still in use and in full force.
For whatever reason or agenda people campaign against AP, one thing
they just can't do is show that it actually doesn't work, It always
comes around to that we don't know why it works. Well, we also don't
know why mtx and plaquenil and gold work (although both plaquenil and
gold have anti-microbial properties) and no one is hell bent on moving
people away from those treatments because of that.
As many people here know, I am on mtx (now less) which I am slowly
weaning off of, so I don't even know if AP works for me, but I do know
it works for many people and that is why I still support it. And I have
also observed what Pip says she has: that if AP is used as the first
defence against RA there are faster results than if the person had used
other treatments first. If I knew what I knew now when I was first
diagnosed, if I knew about all the different treatments and how RA
works, I would have just gone straight to AP and tried that first. I
wish anyone brave enough to do so luck, and I hope everyone's
respecvtive treatments, be they AP, biologics, or bee stings, gives
them a better future.
The flaw still remains in the immune system though doesn't it? You are saying that its the immune response to the infection that causes the problem not the infection itself. So you aren't really fixing the problem either because once the bacteria become resistant to the anti biotic or another infection ensues the RA will return simply because the immune response restarts.
And of course this only works if you believe that bacterial infection is the one and only trigger for RA. I tend to believe that ANY immune trigger in a genetically susceptible person sets off the RA. As I said earlier that I think that the disease we call RA will ultimately become several different diseases as we learn more about the immune system and genetic cdes
If you read the theory behind mycoplasma infection, you would find that the theory is you get some kind infection which spawns the proliferation of mycoplasma in your system (usually something like strep throat or pneumaonia). Mycoplasma are cell wall deficient organisms which are able to hide inside tissue, synovium, and inside white blood cells (which could explain the migratory nature of RA inflammation). We all have mycoplasma, but people with RA have a lot more and also mycoplasma is found in woman at a more prevalent rate than men, Actually, 3 to 1 (sound familiar?). Mycoplasma may hide in a joint synovium for years, then for no yet known reason, they will suddenly send out a puff of waste. It is theorised that people with RA have an allergic response to this waste (the genetic/environmental component), and the immune system then does what it's designed to do and it tries to attack and eliminate the irritant. However, since the irritant is inside the synovium or tissue, it appears the immune system is attacking the joint. This also explains why one day your ankle will swell up and the next day it's your wrist.
The flaw still remains in the immune system though doesn't it? You are saying that its the immune response to the infection that causes the problem not the infection itself. So you aren't really fixing the problem either because once the bacteria become resistant to the anti biotic or another infection ensues the RA will return simply because the immune response restarts.
And of course this only works if you believe that bacterial infection is the one and only trigger for RA. I tend to believe that ANY immune trigger in a genetically susceptible person sets off the RA. As I said earlier that I think that the disease we call RA will ultimately become several different diseases as we learn more about the immune system and genetic cdes
[/QUOTE]
Hi, Buckeye:
Well, in answer to your question, no, the fault does not still lay in the immune system. Autoimmune theory theorizes that we have a faulty immune system that is overactive for no known reason. AP theory theorizes our immune system is overactive because it is doing its JOB. It is not faulty in the least. The job of the immune system is to fight infection. And in the process of fighting an infection, it can make the patient uncomfortable and damage his/her joints. The swelling, redness, fever, etc, are all the immune system's response to infection (like my strep throat example). The immune response is what is making the patient feel pain. It is also what causes the damage. But that does not mean it is a FLAWED immune system.
And yes, you are really fixing the problem by removing the mycobacteria. AP theory says that by removing the CWD bacteria, the immune system will calm down. Just like if you removed the strep bacteria, the immune system would calm down and the redness, swelling, fever, sore throat (immune responses) would go away.
And mycoplasma or other CWD bacteria do not become resistant to tetracyclines because of the manner in which tetracyclines work (they are bacteriostatic drugs, this is an entirely different topic).
Have I made my point more clear now? I do think biologics and other immune suppressors work very well for many people, and they do prevent damage. But that is not to say that the infection is not proliferating behind the scenes. Am I explaining myself clearly? If not, I am so sorry. Maybe I need to brush up on my writing!
Take care, Karin
Hate to be the AP renegade here but I have never bought the 'puff of smoke' all of a sudden your body develops an allergy to the waste thing. I think that's just another theory. Sorry.
I think it's more of a 'leaky gut' thing. Try this...
How does H Pylori, which supposedly needs stomach acid to survive, get found in heart disease plaque and I think the plaque found in Alzheimers patients?
Why do AI people not slough off dead extra DNA like non-AI people?
Why do a lot of these diseases come on during stress?
What are the acid/alkaline numbers when we become ill?
What's the allergy potential of common foods to an acid/leaky gut person?
Why/what does the endocrine system have to do with this?
I don't think they're looking in the right area for 'why'.
Pip
And here's the biggie - why is a doc looking at stem cell therapy for the gut in Tay Sachs? That's a disease you're born with.
Hmmmmm.
Pip
Okay I read *most* of this, but not all. Sorry, I'm exhausted.My disease, PRA, is noted in the beginning with no-swelling and no redness. It's pretty much why we all get the 'it's all in your head thing". But my markers (RF etc.) were off the chart.
That being said - supposedly - the higher the markers the more likely to get damage.
I use the word supposedly because I really don't think they have tests that accurately measure ANYTHING. We all have seen posts from sero-negative people swollen and in pain.
Inflammation is more noticibly seen when it's really bad. Then the docs can see it. But it's still there in our bodies when its down. It's the inflammation that's linked to heart disease - and nobody 'feels' the heart plaque building up. It's in the pancreas of the diabetic - but they don't get inflammation like we get but it's inflammation none the less.
I've posted this before - but really read it - look at it as an example about 'hunting' for inflammation. Our bodies didn't do the job with a sniper gun so now it's throwing hand grenades.
Pip
http://www.geocities.com/SoHo/Gallery/6412/stealth.htm
I test negative on everything, show VERY VERY little swelling, and walk around A LOT with TONS of pain. What the hell am I? LoL
SHEEEWWW! My head is spinning from trying to sort through and understand this thread! LOL. It's sort of like trying to read a Dean Koontz or Robin Cook novel
I post my personel experiences with AP, before AP and so on. They are just my opinions. This disease is horrible and I still remember when I was first told I had RA.
My last rheumy said if I went on AP, I would be in a wheelchair in a year. I'm happy to say that was 2 1/2 years ago and living painfree. I was told I had a very aggressive RA and needed to treat it accordingly. I found out about AP and feel it saved my life. I am painfree.
My opinion on biologics stems from a friend whose son is on them. Due to his suppressed immune system, he caught a nasty bug and was given less than a 1% chance of life at Mayo Clinic. He did pull through but is still fighting lasting effects of the "bug." So it just scares me to think of suppressing your immune system. Again, my opinion.
As most you know, I just moved to South Korea. We are beginning our 2nd month. I am scared. What if I need to see a doctor. I did visit the local hospital and I'm from America, I not used to socialized medicine. Take a number, sit, see a GP, then see specialist. Hopefully, I won't ever need to go. The good thing is the doctors all speak English, the bad is the nurses don't.
I am having fun with my blog describing my adventures. I also love to craft and am ready to get back into that. We had to wait 60 days for our ocean shipment and we've only been in our apartment now a week.
When I post, I'm sharing things that have happened to ME. I'm not a doctor or a research scientist. I just want everyone to be painfree. Is that too much to ask? Hopefully not, someday.
So if something is working for you, I want to hear about it. I wonder if chocolate cures RA. That would be a perfect world.
Better run, waiting for the Korean language teacher to show up. I stink at it!
Take care friends,
Becky
Hi, Katie.
Yes, inflammation is a part of the immune response.
"Inflammation is a process by which the body’s white blood cells and chemicals protect us from infection and foreign substances such as bacteria and viruses. "
I have had pain where I have no visible swelling. My rheumatologist said this is caused by very localized inflammation. Meaning it might not be visible to the eye, but it might just be on one small tendon that happens to be in just the wrong spot when you try to bend a finger joint, for example. So, not all swelling is systemic. Some is localized. And some is less noticeable to the naked eye, but might be in a very painful location.
Pip: Here is one more theory to ponder. It is kind of a cross-over theory. It is really possible to believe in both leaky gut and an allergic reaction. Think about it for a moment. What is an allergy? It is the immune system attacking something that it supposedly should NOT (like pollen, hay, milk, etc). Well, so, maybe allergy is a poor word to use, because if the immune system is reacting to mycoplasma or other CWD bacteria, that is something that it SHOULD react to. I think Brown uses the word "allergy" to explain it is really a very hypersensitive reaction. I do believe that those of us with AI disease are hypersensitive individuals with immune systems like a "bulldog" (as Lallande would say), where the rest of the population has an immune system more like a collie, for example (this is where autoimmune and infectious theory can overlap a little, and where genetics can come into play). However, the main difference is that in the infectious theory, our immune sytem is hypersensitive or over-reacting to something that it is meant to fight against-- an infection, a microbe of some sort. So, if we have a very hypersensitive immune system, why can't we also be hypersensitive to say foods, environmental triggers, etc; and food allergy, as you know, can cause leaky gut.
Just one more theory and possibility to ponder...
Take care, Karin :)
But shouldn't even that small amount of inflammation show up in blood work?I think the tests are all hundreds (just seems like it) years old and are not remotely perfect. Look at the test for Downs. The Triple Test takes weeks to get back and is wrong 1/3 of the time. Last I heard they were working on better tests for Downs but...
With all this money pumping in for research you'd think they'd be working on developing better tests.
Karin - thinking, thinking!
Pip
What? The test for Downs is wrong 1/3 of the time? REALLY? Where did you get that from? I've been around mentally handicap people all my life, and I can honestly say I've never heard that. In fact, Downs is one of THE easiest ones to figure out........My OB/Gyn wouldn't let me have the Triple Test - and sorry - that's for neural tube defect not Downs - both tests were going on at the same time. She said the results were errors 1/3 of the time and later, researching something esle, I did see that written down in a study somewhere.
Pip
http://www.americanpregnancy.org/prenataltesting/tripletest. html
And Down's isn't that easy to figure out. That's why they are moving more to that neck ratio thingy. The Down's Test is imperfect also as well as disturbing the placenta via amnio.
Pip
Katie
I have swelling, fat sausage like fingers (I've had my wedding ring resized 2 sizes) and knuckles.... although no swelling shows in my bloods but my RF is very high. Go figure**!
Pip I read that article and I'm absolutely full with hunters, dogs and torches at the momentPip, I'm pretty sure that puff of waste was from Dr Brown's own theory.
Argh, you read about this stuff so much and then you strat forgetting
where you read things. Anyway, everything we discuss about the
mechanism of this disease is theoretical so who knows what's what?
I SO WISH I could find a copy of that article. It didn't say mycoplasma was
found in the white blood cells of people with RA---it said and a "bacteria"
or "bacteria-like substance". The problem is when I search for it the key
search words are "white blood cells" "arthritis" and "bacteria" so you can
guess how many bazilllion pages come up. I'm kicking myself for not
copying it. I'll keep looking for it, though.
Hi, Katie: This is my opinion on the subject. I know people have extreme pain and yet the sed rate and CRP remains low. It is my feeling that the markers remain low because it is not systemic swelling (this would be a good thing for you). And when measuring the inflammation for the entire body, if the swelling is in just 8 fingers, for example, this would not register as very high, but a more normal reading. It probably balances out with the extrememly LOW inflammation elsewhere in the body. Where, someone else may be in just minor pain, but the inflammation is (mild) all over the body, it may show in the blood work because it is all over. That's just my opinion based on some facts given by my doctor.
Now two rheumaologists have told me they do not understand why swelling does not show up in the blood of some patients. And other rheumatologists have told me it all comes down to the baseline. In other words, some people just naturally have a very high baseline, and some have a very low. I know the inflammatory markers are known to go up with age, for example.
I think most information you read about RA will say that it is the long-term inflammation which causes the damage. So if you, or others, have damage, then surely there is inflammation.
JMO. Take care, Katie. ~Karin
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