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Ok, so I just went to my family doctor because I got a rash that lasted about 30 minutes and am afraid I am allergic to Minocin..
Anywho, this was the first time I talked to him about AP and about how I'm not going the conventional route.. He was very understanding and is a super nice doctor to have…
However, he started to talk about RA and how it works.. He said there are two things that cause destruction.. The inflammation side and the auto immune side.. He said he does believe that the minocin can help treat the inflammation because it has anti inflammatory properties but he said it will not treat the auto immune side.. I asked about RF factor and anti ccp levels etc and if those numbers go down doesn?t that mean the minocin is working and he said not necessarily.. That those levels are intertwined (both inflammation and autoimmune)..
This sure did scare me into thinking about the conventional stuff again.. (THINK about it.. Definitely not even close to accepting this and am going to continue Minocin, hopefully, if I?m not allergic).Someone put my mind at ease…
Thanks
I'm not a doctor, so my opinions are based on my Bachelors degree in Microbiology, and my additional extensive reading on RA and autoimmune diseases. I think your doctor is wrong. Minocycline is an antibiotic. It interferes with bacterial protein synthesis. It has very, very limited anti-inflammitory properties. If you sprained your ankle, the doctor would not prescribe minocycline, they would prescribe a NSAID.
Personally I do not buy the theory that RA is auto immune. Our symptoms are a response to an infection. Our immune system is actually trying to do its job and rid the synovial fluid of the infectious agent.
“Autoimmune” is the medical community's lame excuse when they do not know the answer. How convenient to just say “oh, sorry, bad luck with your genetics. We don't know the cause, too bad for you”
One day, in the hopefully not to distant future, the medical community will admit they were wrong, and accept the infectious theory. Much like they finally had to accept the cause of stomach ulsers being bacterial. Some day the use of all these horrible “conventional meds” will be nothing but a horrible memory.
Starla
[user=75]stwig[/user] wrote:
Personally I do not buy the theory that RA is auto immune. Our symptoms are a response to an infection. Our immune system is actually trying to do its job and rid the synovial fluid of the infectious agent.
“Autoimmune” is the medical community's lame excuse when they do not know the answer. How convenient to just say “oh, sorry, bad luck with your genetics. We don't know the cause, too bad for you”
So why does half the population have these infectious agents but no signs of disease? Assuming I am one, it means my immune system is smart enough to ignore these benign agents, while yours mounts a sustained attack wreaking havoc with normal bodily functions while unable to eliminate the pathogen. Maybe if the medical community called it “dysfunctional immunity” rather than “autoimmune” it would be easier to accept there is an inherent flaw in your immune system. I'm not saying an “infectious” agent is not the cause but rather how the immune system responds to this agent.
[user=75]stwig[/user] wrote:
Autoimmune” is the medical community's lame excuse when they do not know the answer. How convenient to just say “oh, sorry, bad luck with your genetics. We don't know the cause, too bad for you”
Funny you say this.. He said I was born with this and would eventually get it.. Genetics…
Tom, there isn't much to add to Starla's great comments! She just said in a few lines what normally takes me about a page to describe. Must be that fine, grassfed buffalo meat down south or something. :roll-laugh:
Just thought to add that if docs test for RF and anti-CCP, which in combination are both antibodies specific to a diagnosis of RA and these then decrease while on AP, then doesn't that tell them that the autoimmune process is also decreasing? Anti-CCP is (apparently) a measure of cell aptosis (cell death) in the joint synovium. If this is decreasing and returning to normal, this means that the disease process is also slowing and returning to normal.
The trouble is, as Starla so eruditely said, they don't believe in infectious causes, so they can't ever conceive of these diseases going into remission. This is probably why most rheumies rarely re-test for RF and anti-CCP, because they just never expect them to go down. A study I found on Remicade did measure RF and anti-CCP over an extended period of about 22 months. While RF did come down over time, anti-CCP only came down by about 25% in the first few months and then remained at this level for the duration of the study…in all but one or two study participants. My anti-CCP (though I don't know how high it was above 60 initially), as of my last bloodwork in mid-Oct, was down to 35 since last May. So, in 6 months it had decreased by almost 50% from highly positive severe disease to a low, mild positive.
That said, everyone's progress on AP will vary and the earlier AP is begun, usually the swifter the turn around. Although AP doesn't kick in as fast as some DMARDs or the biologics, Dr S reported in The New Arthritis Breakthrough that he estimated that 80% of his patients reached credible remissions. That's quite a statistic for a disease that is never thought to improve and will only worsen with time.
Just responded on your other thread about your allergy concerns. Try not to worry about this…if you do happen to be allergic, then there are alternative antibiotics that can be used in AP and all is not lost. 😉
Peace, Maz
[user=20]Joe M[/user] wrote:
Maybe if the medical community called it “dysfunctional immunity” rather than “autoimmune” it would be easier to accept there is an inherent flaw in your immune system. I'm not saying an “infectious” agent is not the cause but rather how the immune system responds to this agent.
Well said, Joe! The term “dysfunctional immunity” is a really good way to describe this.
Peace, Maz
If it's 'genetic' and you were bound to get it at some point, then why do some siblings (who have the genetic marker) get it and others don't? Something HAS to trigger it. A stressful event or trauma or whatever lowers your immune system enough for the bad bacteria to overtake the good bacteria and bam – disease.
At least you found a doctor who is willing to discuss it with you. He'll probably be very resistant to accepting the 'infection theory' though — unless of course you kick RA's butt with AP. Prove him wrong Tbird! :roll-laugh:
Good luck with the allergic reaction or whatever it is. I'm interested to see how you respond to your next dose. I think I've read that others have had similar reactions that disappeared within 2-3 weeks when their body adjusted.
Thanks for the replies everyone! Sure does make me feel better about it all.. It's just so hard when the doctor's and people you talk to face to face (the ones who went to school for all of this) tell you one thing, and then books and my internet buddies tell me another..
I totally believe everything I read in the book and I believe in results which my friends here are posting.. It's just when the doc's put the fear in you that you aren't doing enough or that what you are doing isn't going to fix.. It scares me!
[user=75]stwig[/user] wrote:
“Autoimmune” is the medical community's lame excuse when they do not know the answer. How convenient to just say “oh, sorry, bad luck with your genetics. We don't know the cause, too bad for you”
One day, in the hopefully not to distant future, the medical community will admit they were wrong, and accept the infectious theory. Much like they finally had to accept the cause of stomach ulsers being bacterial. Some day the use of all these horrible “conventional meds” will be nothing but a horrible memory.
I agree! I hate the word “autoimmune” almost as much as I hate the word “idiopathic”. They are fancy words for “I don't know” and for those of us with particular sensitivities “It's your fault”.
I think that an autoimmune diagnosis probably causes a lot of people to give up before investigating other options – better diet for example, can help with a lot of things. Or supplements. Or AP for the people on this board.
I would say stay on the AP. My doctor (rhuematologist) sort of tried to scare me off AP too. I think that might just kind of come with the territory. Good luck!
[user=851]tbird2340[/user] wrote:
I totally believe everything I read in the book and I believe in results which my friends here are posting.. It's just when the doc's put the fear in you that you aren't doing enough or that what you are doing isn't going to fix.. It scares me!
You know, you have something there, Tom….speaking purely philosophically here, there really are two kinds of knowledge in this world…one that comes from books and one that comes from the wisdom of personal experience. Docs who haven't experienced a rheumatic disease, themselves, can only relate to us what they've learned from books and research papers. A bit like someone who has read the manual on carpentry, but has never made a chair.
This is the challenge we all face when choosing AP over the more conventionally used meds, because we only have a physician's booksmart opinion on one side and a few AP studies to go by and mostly anecdotal evidence from our peers on the other. In a sense, to choose AP is an act of faith, after one has become book smart about AP for one's self and then having the patience and persistence to wait it out. Like reading the manual on carpentry and then actually making the chair.
I don't know about you, TBird, but I place more faith in what I know from personal experience than what someone else “believes,” even our physicians, who went to school for so many years. They're book smart and they may have a lot of experience in one or two fields dealing with different ailments with lots of patients, but if they don't have experience in the field of AP and only selectively choose which research they will rely on (or treatment guidelines given to them by their various societies, which we now know aren't the god's truth after the IDSA fiasco), then they can't really say in all integrity that AP won't work. The irony or all ironies is that, in the field of science, the absence of evidence is not proof of anything.
At least, that's how I've rationalised it…others might decide differently for themselves, based on their own personal experience.
Peace, Maz
[user=27]Maz[/user] wrote:
[user=851]tbird2340[/user] wrote:
I totally believe everything I read in the book and I believe in results which my friends here are posting.. It's just when the doc's put the fear in you that you aren't doing enough or that what you are doing isn't going to fix.. It scares me!
You know, you have something there, Tom….speaking purely philosophically here, there really are two kinds of knowledge in this world…one that comes from books and one that comes from the wisdom of personal experience. Docs who haven't experienced a rheumatic disease, themselves, can only relate to us what they've learned from books and research papers. A bit like someone who has read the manual on carpentry, but has never made a chair.
This is the challenge we all face when choosing AP over the more conventionally used meds, because we only have a physician's booksmart opinion on one side and a few AP studies to go by and mostly anecdotal evidence from our peers on the other. In a sense, to choose AP is an act of faith, after one has become book smart about AP for one's self and then having the patience and persistence to wait it out. Like reading the manual on carpentry and then actually making the chair.
I don't know about you, TBird, but I place more faith in what I know from personal experience than what someone else “believes,” even our physicians, who went to school for so many years. They're book smart and they may have a lot of experience in one or two fields dealing with different ailments with lots of patients, but if they don't have experience in the field of AP and only selectively choose which research they will rely on (or treatment guidelines given to them by their various societies, which we now know aren't the god's truth after the IDSA fiasco), then they can't really say in all integrity that AP won't work. The irony or all ironies is that, in the field of science, the absence of evidence is not proof of anything.
At least, that's how I've rationalised it…others might decide differently for themselves, based on their own personal experience.
Peace, Maz
I totally agree with everything you said Maz.. I will add this though.. Doctor's are only book smart, however, they do get to treat hundreds of patients so they do get to see the effects / treatment which the prescribe so that is added experience.. That also goes to say for the AP doc's though! If it didn't work, I doubt they would keep prescribing it!
Hi Maz,
I agree with most of what you say, but from a doctor's perspective they have to be skeptical. Say one patient comes to them and says their arthritis is all gone now that they started eating pears. Should this doctor now prescribe pears to all his/her arthritis patients? Of course not – one anecdotal story can not be extrapolated to the entire population. That is why doctors are so stuck on being science based, which means relying on double blind studies that eliminate the placebo effect in order to determine if a treatment is effective. AP passes that test! It would be interesting to develop minocycline with only antibacterial properties and no anti-inflammatory properties and redo the MIRA trials. That would answer the question once and for all how mino works for RA. For now, the docs who think it is the antibacterial properties and the ones who think it is the anti-inflammatory properties are both right, maybe.
Joe
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