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Perhapaps RA is not an infection and in reality minocin only acts as a good, albeit weak anti-inflamatory like this link from Johns Hopkins says
as I said previously, arguably my wife has been the poster child for AP protocol with diet and exercise. I truly can't imagine anyone doing more. He saw Dr. S in GA, is on antifungals, and everything under the sun that may help. No sugar, no wheat, no diary, you name it, and while she has done and felt quite well, the problem is the joint damage which has continued.
So here we have someone feeling really well, but the damage continues. Is that what we are looking at after 5 years on AP? Should she have done the mtx and biologicals, and maybe not felt as well, but perhaps ended with less joint damage?
What is one to do?
thanks
JDI don't know the details of your wife's situation, but I'm sorry to hear her illness is progressing. I hope you have the guidance of a doctor you trust, or as Maz suggests, seek out someone like Dr. S.
A comment on Johns Hopkins–their website used to be saved to my favorites; I checked the arthritis info often and once sent in an “ask the doctor” question. But then I read their view on the role of diet, which seemed way off. And some of the “Ask the Doctor” responses seemed like they lacked compassion. Even though they're an extremely well-respected organization, I sensed some limitations.
Sierra
Could you please email me Dr. S in Georgia, name and telephone number?
I would really appreciate your help.
Of note, do not be discouraged, I was very very very ill – and it took 2 years to even start recocery, but finally I went into remission. I will pray for you.
Thanks,
Jane
Hi Jane,
Have sent you a private message with Dr S's (in Georgia)contact info. Just click on “1 new message,” at the top right, beside where it says you're “logged in as…”.
Peace, Maz
I would like to make it clear that AP with anti-fungals, diet and exercise are great for RA. My wife feels really, really well, you would never know she has RA, and this protocol has greatly helped during these past 5 years or so, but my point is that regardless how well she feels, the damage to her joints continues, and that is my whole point, and the point that her rheumy makes.
When my wife said to him “but I feel so well!”–when he wanted to put her on stronger meds, like mtxt and/or biologicals, to which he replied: “how you feel has no releance to the damange that is happening in your joints”.
So we know for a fact that AP, etc, works very nicely, makes her feel good when she almost couldn't get out of bed, etc, etc….but, but….what about the continuous damage to the joints? She has continued to deteriorate in terms of joint mobility in her wrists and enlarged knuckles without doubt.
And here we have someone with a iron will, and obsessive about doing everything right. Amazing diet restirctions, wonderful exercise routines all the time, etc, etc, so my point as mentioned before, if SHE cannot stop the damage, then who can?
So here we are at this juncture debating on whether to go on mtxt and/or biologicals or not?
Hi
If its taken at 200 mg daily –it is actually a strong anti -inflammatory as well as anti–collaganese –what was the dose she is taking ???
richieHi
While evidently your Mrs is feeling well with the antibiotic –the erosions continue –it would seem to me another med in conjunction with minocycline should be considered such as a biologic or Arava or something like that –There are quite a few doctors who use this combination if called for —
richie“how you feel has no relevance to the damange that is happening in your joints”.
Reminds me of the Music Man selling instruments right there in River City. In that case what does how she feels have relevance to?
If you can't tell the difference between something that is good and something that isn't good, then there is no appreciable difference, it doesn't matter. I don't see the reason for all the gloom and doom. I would simply ignore the doc or if he really got under my skin, I would seen another doc for a 2nd opinion. There is almost no way I would buy window insurance from a man with a brick. I'm sorry Jaydee, but I think the guy is disreputable. As a minimum make him sell this to you. Then again, maybe he already has.
I would definitely agree with you, however, this rheumy is one of the world's authorities in RA, second he is actually the one that renews the minocin rx for my wife, he was supportive of whatever she wanted to do, as long as it was working, as well, since we're in Canada and Doctor's visits are covered through the health insurance system, and she doesn't have to pay anyting, there isn't any incentive for him to keep her coming back. Therefore the usual arguments which you and I would normally and rightfully have, become minimized in view of the fact that there isn't anyting in it for him to get her on mtxt and/or biologicals. All of this of course doesn't make our decision process any easier, because we don't have much to grab on to.
Therefore the key factor we must all confront is this: we know AP works well, no question about it. It slows down the inflam process, etc, etc, but will it stop the prograssive joint damage after 4-5 years? If the answer is “maybe”, or “in some people it might”, or anything similar, then we're in a bit of trouble. We can't mess around with our health and lives, and we must make the difficult choice of going with something stronger, with potential risky side effects, but may prevent further joint damage.
Perhaps at the end of the day RA may not be an infection after all, and minocin may indeed simply have an anti-inflamatory effect, hence the relief….what a dilema.
Hi
Is the damage confirmed by xray or is it just his opinion? I can see where John is coming from, but if the damage is confirmed by xray then you are at a crossroads.
I agree with Joe on this one. An x-ray is diagnostic. But even so, I would demand doc show me the before and after and even teach me to read it. And then I would still seek another opinion on the x-rays before I would abandon antibiotics. Maybe the day will come when I too will be forced to change my mind. But I am so, so far better off than I was 4 years ago. IMO, rheumatologists are paid to know how to manage side-effects of dangerous medicines as much or more than to manage the disease. If the erosions are so slow that your wife can't notice them then how can they possibly appear on an x-ray? It just sounds wrong.
Years ago I had a dentist tell me he didn't like the look of his predecessor's work, a root canal. The tooth didn't hurt or bother me in the least but each 6 months for 2 years he sucked his breath through his teeth and did the “hmmm, I don't know thing”. I told him he is the dentist, do his professional best. Well my trust was misplaced. Not only did his revision really mess up that area, it was by far the most painful dental procedure I have ever had. I should have ignored his professional judgment and left well enough alone. I have had similar MD experiences, especially with surgeons. Frequently less care is more.
Good luck.
Hi
WE really arent in trouble –the person who has continuing joint erosion is —The antibiotic protocol was never promulagated as a cure -all or panacea –the plain fact remains that it is app.65 % effective about the same percentage as biologics –Unfortunately –over zealousness at times by some people give the appearance of a much much higher effective rate –The plain fact remains that in treating RA –the best modern medicine has now is about a 65 % success rate –whether its an antibiotic approach or a biologic approach –anything to the contrary just aint so !!!!
Richie
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