How does AP really work?

[orchid]

Hi,

I'm a newbie so I'm just asking all kinds of questions and trying to find my way. Sorry if I'm repeating any questions or asking too many! I have so many questions swirling in my head, it isn't all sinking in at one time. It's going to take some time, so please bear with me – thank you! 😛

I'm just wondering how AP really works? I'm not knocking AP, just trying to understand what it's really doing. I don't have the book yet, just ordered it, so in the meantime – I have a lot of questions.

It seems so controversial — AP doesn't seem as widely accepted by a lot of doctors. I understand this is a $$ driven world and the big drug companies can afford to do the clinical studies and have the dough to market their drug therapies. In fact, I've never seen SO MANY drug ads for enbrel it makes me want to barf. :sick: I'm happy that the other treatments are working for a lot of people, though – so I understand people's need to do what's best (for them) so they can live quality, productive lives… as pain-free as possible.

AP is so much cheaper but it also seems safer (in my opinion) so why would doctors still prescribe the big drugs instead of offering this treatment first?

Doctors are in the business to help people get better, so why aren't more recommending AP? Even my doctor, when I mentioned it briefly said “it's a theory” and she's highly recommended to me, VERY friendly, compassionate and takes a lot of time with her patients. So, I trust her. When I go back to talk with her, I'll bring it up again and go more into depth on the topic.

I realize AP can take longer (to feel the effects) so maybe that is why?

A lot of people here have found relief on AP, gone into remission, etc. Is it really working to STOP joint destruction, though — or just reduce inflammation so it SLOWS destruction and reduces pain. Slowing joint destruction is still good, but I know for most people – remission is the goal.

For me – I have negative bloodwork and no erosions so far, so how do I gauge that it's really working? I may “feel” better on AP but how can I really tell it's working? For those on enbrel or other drugs, etc with negative bloodwork, how do you really know enbrel is working, either? I would think it would be easier to gauge your progess if you have positive bloodwork and the numbers continue to drop while on treatment.

AP must be doing something, because a lot of you have seen a drop in your blood results, but is that an effect of the reduced inflammation or are you really killing the disease-causing bacteria?

I think that's where I'm confused and I'm sure the book will tell me more (when I get it) but I'm just wondering how you all feel about it. I've read some pretty good debates on here and even some of those “on” AP debate whether it's really working.

Sorry if I'm beating a dead horse, here – I'm just want to have a better understanding so when I meet with my doctor in Sept I can discuss this intelligently with her! I don't think she'll have an issue prescribing since my RA (or whatever it is) doesn't appear to be aggressive…but if it WAS aggressive, she seemed pretty set on starting me on enbrel.

Thanks as always!

[Cheryl F]

Orchid:

You ask the question that is asked by most people who are considering AP, it just doesn't make sense.  The treatment, for RA has been PROVEN SAFE AND EFFECTIVE, in a large, double-blinded, multi-center, clinical trial.  Yet, most rheumatologists still disregard AP as a potential therapy, even when the patient requests it.  I just doesn't make sense.  So then we must theorize that there is some other reason.  Many have concluded that it is the heavy marketing done by the pharmacutical companies that has left AP in the shadows of the biologics.  Still the MIRA study showed that minocycline is a safe and effective choice.

To me, when I was making this decision for my daughter two years ago, it just made it clear that the mainstream rheumatologists that disregard AP as a potential treatment are clearly biased.  It doesn't matter where that bias came from or why, you just need to realize that it is there.  Then, with that knowledge you can hear the mainstream point of view, and weigh it against information that you read here on the RBF website and in the book when you receive it.  I am not suggesting that you disregard what you are being told by your mainstream rheumatologist, just weigh it with  the other information that you are learning. Then, DECIDE FOR YOURSELF!!!

The doctor who diagnosed my daughter told me “AP IS A HOAX!”  And “He would have nothing to do with it”, so we found an experienced AP doctor and proceeded with the treatment, because that is what WE DECIDED.  Your doctors are like consultants to the CEO (you) of the corporation (your body).  Consider what they recommend, get various recommendations, but in the end, you roll it all up and do what makes sense to you.

Good luck with YOUR decision on how YOU want to address YOUR condition.

Cheryl

[Jennhere]

I saw several specialists who expressed the same sentiments about A.P. as Cheryl described.  It's very disheartening.  It's probably the main reason I hesitated for a year before getting minocin.  I was written prescriptions for Humera, Methotrexate, prednisone, prozac and the like… but the script for mino – the scoffing shamed me at my lowest point in life.  Then I'd get back on the rbf boards and do my crazy act again for a few weeks.  There's nothing quite so out of control as a scared human being in tragic amounts of pain!

 I felt like I walked off a cliff the day I took my first dose of mino.  The only people who supported my decision were here on this board….. a bunch of internet people I didn't know.  Everyone in my real life reminded me I was  mother who could DIE taking advice from people off of the internet!:shock:  Doctors said it wouldn't likely KILL me, but certainly wouldn't help, either.  Nothing like going against popular opinion!  I can look back and can't tell you exactly how I arrived at the decision to do it.  Must have been the excruciating pain mixed with fear and the realization that death would be preferable to another day of living hell….

I don't know why it works.  The guys making all the big bucks in science and health aren't too interested in it because it's not a $$ maker. 

I think you'll have to do this all on your own.  Trusting people on the internet who have gone before you!!!:D 

Jenn

 

[Joe M]

The rheumies I've encountered who disregard AP and the bacterial etiology of RA do so on the basis of the lack of peer-reviewed studies or the conclusions of the existing peer-reviewed studies.  They are aware of MIRA, but while APers read MIRA and pick out the good bits, rheumies read MIRA and pick out the negative bits.  For example, here is the ACR opinion on MIRA and another study done on minocycline in RA:

http://www.rheumatology.org/publications/hotline/archive/0195minocycline.asp?aud=mem

[Cheryl F]

[user=515]orchid[/user] wrote:

A lot of people here have found relief on AP, gone into remission, etc. Is it really working to STOP joint destruction, though — or just reduce inflammation so it SLOWS destruction and reduces pain. Slowing joint destruction is still good, but I know for most people – remission is the goal.

Orchid:

I don't think that there is a definitative answer to your questions, just theories, but I do know that AP does STOP the joint destruction not just slow it down.  Now I am not saying that is does this for 100% of the people who use AP, certainly it is not a 100% effective treatment, but the point is to STOP the joint destruction.

I personally know (have met in person) several people who have been on AP for RA for 15 to 20+ years.  Their joint destruction was STOPPED not just slowed. 

I hope this helps to answer your question, the intent of AP is to stop the disease, actually the uderlying condition that is causing the disease, not just the symptoms.

Cheryl Ferguson

[Maz]

Just a word to add to Cheryl's wise comments….was re-reading The New Arthritis Breakthrough yesterday for the umpteenth time…there was a comment that got me to thinking. It was stated that some joint damage doesn't actually show up for years. What this could mean is that a patient might have RA for a period before it is diagnosed. The damage may not show up on MRI immediately and the patient goes onto AP and reaches remission. However, many years later, the damage that was already done prior to treatment begins to appear.

Made me wonder if this could be what has confounded Jaydee with his wife's sudden appearance of joint damage, in spite of being in remission for a good period of time. Maybe or maybe not, but it certainly points to the fact that the earlier one can begin AP, the better the chance to avert joint damage.

Peace, Maz

[Patti D]

Hi Cheryl, Maz & Orchid,

Thanks for that reminder, Cheryl. I need to be reminded just like all of the other newbies that not all of the doom & gloom the rheumy told us may happen. I went on AP right away and hopefully My joints may not suffer with a permanent type of damage. Oh, I can only hope & pray that this is the case for all of us:)

Happy days!

Patti

[lynnie_sydney]

Orchid – in my view, there is nothing that beats suddenly coming to a realisation deep inside that this way makes utter sense. It has happened to alot of us in different ways and at different times. Mine was in 2001 when I googled palindromic RA and came across a story written by a woman who'd been diagnosed with the same condition, her initial terrible experience with increasing pain and debility, what she was told and prescribed, her later discovery of  AP and her subsequent journey with this protocol. It was as if someone suddenly had taken apart a puzzle on which the picture was completely obscured,  then put the pieces back together in a way that made the picture visible and clear. It spoke to me on a very deep level. I then read everything I could get my hands on – the Scammell book, everything educational on this site and some others. My conviction that this was the answer for me just kept increasing. I then put it on the back burner for when and if my condition flared again, which it did two years later. I went onto AP (with my own Doctor's assent, but I case managed myself), had a text book herx then gradually felt better and better until, in less than 12 months, I became practically symptom free. So my advice is to read the testimonials, read the educational section, read the book, read everything you can and then listen to what your head and your heart say to you.  Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[orchid]

Thanks to all of you for your replies…

This helps clear it up for me. I can't WAIT to get my book.

Cheryl – thanks for clarifying for me whether is STOPS joint destruction or not. I just read the stuff about it reducing inflammation so I worried that it gives you the elusion that it's working (no pain because less inflammation) while quietly damaging your joints. That is what I was confused about.

Joe – thanks for posting that study on MIRA.

Jenn – thanks for sharing your story. So glad you showed your doctors/family/friends whose right!

Maz – Thanks for your reply!! I'm confused about something you wrote, though…? How would the joint damage still show up later? For instance, I started having symptoms in March '08 (I think) and they were and still are pretty mild. Most of the day I don't have any pain or stiffness at all. Feel pretty normal. Then, I'll feel a little pain in my finger or wrists or whatever and it reminds me again. I had neg bloodwork and MRI done in July = no erosions but inflammation. So, even if I start AP ( in September (and it stops all inflammation and I have no pain, and stops destruction), I could still have erosions show up in several years? How?

Thanks again everybody!!

[Maz]

[user=515]orchid[/user] wrote:

Cheryl – thanks for clarifying for me whether is STOPS joint destruction or not. I just read the stuff about it reducing inflammation so I worried that it gives you the elusion that it's working (no pain because less inflammation) while quietly damaging your joints. That is what I was confused about….

…So, even if I start AP ( in September (and it stops all inflammation and I have no pain, and stops destruction), I could still have erosions show up in several years? How?

Hi Orchid,

Good question and I can't answer it fully for you, as it was just a comment in The New Arthritis Breakthrough that stood out yesterday as I re-read the book….that not all joint damage shows up immediately. I'm going to have to go back to find the passage…please give me a bit of time and I'll try to find it again, so that when your book arrives you can find it for yourself. 😉 Every time I re-read the book, I find some new factoid that I'm surprised I didn't notice before.

In regular rheumy language, early, aggressive treatment with immunosuppressing DMARD drugs or biologics is usually the gold standard today, rather than simply prescribing anti-inflammatories for years, as it is said that most damage in RA is thought to occur in the first two years after diagnosis. Why that is, I don't know, either. Seems that some people start out mild and stay that way…others progress to more severe disease and others start out severe. So, a one-size fits all doesn't fit either in conventional med. And, even where early, aggressive treatment is used, not everyone escapes joint damage…not sure about biologics, but certainly with methotrexate and others, which just seem to mask the disease.

It's inflammation that causes damage, so without inflammation, there should be no damage. This is why, during a herx, inflammation may be increased and also why it's important to use anti-inflammatories to keep the inflammation at bay as much as possible, as well as to keep the antibiotic dose regulated so that only tolerable herxing occurs. 

Peace, Maz

[orchid]

Maz, You are certainly quick! No rush on the answer, seriously!

Like you, I'm sure I'll keep referring back to the book, so I'll have to get my highlighter ready.

🙂 Thank you

I'll be very interested to see the answer. For all of you on AP, what anti-inflammatories do you take along with it when you herx?

I should ask about herxing, then, too. Maybe I should start another thread about herxing. Before I do, I'll do a search and see what I can find.

1. What are all possible symptoms of a herx?

2. If you've reached remission, do you continue to herx? I'm guessing-no.

3. How often do you herx (on average)? – Again, guessing everyone is different.

THANKS!

[orchid]

Does AP work if you they don't find any mycoplasma infections? If you have RA but no known infection — does this ruin the theory that RA has an infectious cause? Or do only “some” RA patients have infectious RA?

I was talking with my dad about this today. He's had RA for 35 years and they basically had him on aspirin for 10-15 of those 35 years. 🙁 He's been on methotrexate for 20-25 years and gets cortizone shots in his wrists/knees as needed. He often gets water on the knee. He only recently (this year) started trying some alternative treatments and I'm so proud of him. He really has opened his mind! He had acupuncture done on his low back with good success, has adjusted his diet a bit, and takes tumeric for pain.

His doctor is pretty old school and my dad has always thought he was GOD or something, but he's finally admitted that this doc doesn't know everything. My dad's lower back was so bad at one point and the doc told him, “You'll have to learn to live with it.” That one comment changed the way my dad thinks about his RA and I'm so glad! He's still sees this doc but realizes there are other options out there. He didn't have to learn to live with it…he does exercises for his lower back, acupunture and his back is, as he states “90% better.” He's 71 and not sure if he could handle AP — his knees are pretty bad but he still walks and bikes (today we biked together) and keeps very active. I hear you can take metho and minocin and do well. I would hate to see him worsen (herx) and suffer, though — he IS my dear ol' dad!

He mentioned a family friend of ours who has RA (severe) and tried AP and it didn't work – I don't know the details. She's on enbrel now. In her case, I don't know if she:

A) tested for mycoplasma to begin with

B) how long she stayed on it

C) if she knew enough about it to understand a herx and that it's actually a good thing and not proof that AP isn't working

I'll have to get in touch with her and find those answers.

Thanks!

[Maz]

Hi Orchid…I think I found the bit in The New Arthritis Breakthrough about joint damage not always showing up immediately. It's in Chapter 4, “Testing the Infectious Theory,” page 66, third paragraph down.

“By the time of the MIRA trials, Rothschild's research had already convinced him of the need to be much more aggressive in therapy, both by starting earlier and by using stronger suppressive agents. Despite that research, and despite his conclusion that inflammation of the joints is always erosive even if it doesn't show up on X-rays (sorry I said MRIs), those stronger agents did not yet include antibiotics. Like many other physicians, Dr. Rothschild was conscious of the issue of liability, and he described himself as a big believer that things should be done under a protocol. But he said that he was very pleased that this particular protocol (antibiotic protocol) was finally being put to the test.”

In spite of being a pretty conventional rheumy/researcher, Dr Bruce Rothschild believed that RA was a “communicable disease and that it originated in North America.” He not only believed it was communicable (though not being passed in a direct manner), but that some individuals had greater susceptibility variables (genetic propensities) and that certain “slow-acting” organisms could well be responsible for triggering particular rheumatic diseases. He felt strongly that pathogens in the gut were linked to various spondylarthropies. He's known as a “splitter.” Whereas Dr Brown was a “lumper,” lumping all rheumatic disease into one bucket, so to speak, because he found that the majority of his patients responded well to the tetracyclines and he didn't pay much heed to differentiating between the various rheumatic diseases. More will become clear when you read all this within the context of the book, though.

Peace, Maz

 

 

[orchid]

Maz,

Thanks again. I can't WAIT to get the book. I ordered it from Amazon so I should be getting it soon.

I appreciate you posting that passage. It's still all very confusing to me — and obviously everyone, since scientists don't even know the “cause” yet.
I sure hope that vaccine they just announced turns into something. Although that's a whole other topic with a whole new sets of issues to think about. Wish I had paid better attention in science class!

Funny story – my sister called me late last night to chat and said she has a new neighbor. A boy (man now and his wife) I used to go to school with, since kindergarten. He used to put flowers in my locker in second grade! He had such a crush on me back then!

Remembering that (and dealing with this now) I'm starting to feel really old and I'm only 30! I was just laughing at the memory. Small world. Everything comes full circle it seems.

[Maz]

[user=515]orchid[/user] wrote:

Funny story – my sister called me late last night to chat and said she has a new neighbor. A boy (man now and his wife) I used to go to school with, since kindergarten. He used to put flowers in my locker in second grade! He had such a crush on me back then! Remembering that (and dealing with this now) I'm starting to feel really old and I'm only 30! I was just laughing at the memory. Small world. Everything comes full circle it seems.

Orchid, that must have really blown you away to hear about your old 'beau' moving in next to your sis!  Should be fun when you go to visit reminding him of his flowers in your locker! :roll-laugh:

Peace, Maz

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