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Hi everyone! Just wanted to share a little story with you all….
My dad is 64 years old and was diagnosed with RA approximately 3 weeks ago. His first visit to a rheumatologist was today. My mom went with him to his appointment. Prior to their visit, I armed my mom with as much information as I possibly could regarding AP treating RA in hopes that the rheumy would be open to trying this approach with my dad. I did warn her that the response from the rheumy would probably not be a good one. My mom wrote everything down and discussed this option with the rheumy. The rheumy's response was…”I'm sorry to tell you this, but your daughter is wrong”. “Anyone who weans themselves off methotrexate after starting on minocin will be doing far more damage to their body than if they would have stayed on the methotrexate”. What on earth is he talking about!:headbang: How can he even believe what he is saying?!?!? So after taking several xrays, drawing labwork and injecting my dad with two cortisone shots in each shoulder the doctor said he would wait until the labwork comes back and at that time he will most likely start my dad on methotrexate!!!!!
It is so discouraging to have all the facts right in front of you and still not get anywhere with this. It is soooo unfair! My goal is to get started on the minocin, go in to remission and then go with my dad to this doc and let him see me and know that he was the one who was wrong!!!! NOT me!!
Good for you! It is very frustrating….I wish you luck with everything with you and your dad! He is lucky he has you:) All of the stories that I am hearing on ths website make me even more interested in becoming a rheumatologist (who WILL administer this treatment…). It is so sad that some doctors do not listen…
[user=924]1-2-b-healthyagain[/user] wrote:
The rheumy's response was…”I'm sorry to tell you this, but your daughter is wrong”. “Anyone who weans themselves off methotrexate after starting on minocin will be doing far more damage to their body than if they would have stayed on the methotrexate”. What on earth is he talking about!:headbang: How can he even believe what he is saying?!?!?
My goal is to get started on the minocin, go in to remission and then go with my dad to this doc and let him see me and know that he was the one who was wrong!!!! NOT me!!
Hi 1-2-b,
Why not take your Dad with you to see Dr T for a second opinion? The earlier AP is started, the faster the response. It's not uncommon for people to seek out second opinions and, with any chronic disease, you're in it for the long haul and it's actually a very wise move.
Did your Dad respond that his daughter was showing signs of renal and liver problems on the methotrexate? That might have made him bite his tongue! 😉
Peace, Maz
Hi Maz,
I'm showing liver problems on AP. Notice, I didn't say BECAUSE of AP, but my physician (PCP) thinks so.
AST was pretty high. Think there's any connection with mino/liver problems or maybe inflammation/liver problems? Thnaks, LMH
Yes, I think it's possible for AP to cause liver problems as well.. Maybe just not as common? The AP doctor I went to actually had to come off of AP and stay on MTX because of liver problems whilst on AP..
Maz, when my mother told the doc about my labwork showing early signs of kidney damage, the doc then replied “well, we're here to talk about your husband, not your daughter”. How about that answer, huh!!!!
[user=924]1-2-b-healthyagain[/user] wrote:
Maz, when my mother told the doc about my labwork showing early signs of kidney damage, the doc then replied “well, we're here to talk about your husband, not your daughter”. How about that answer, huh!!!!
Hi 1-2-b….hmmmm….well, it sort of answers the question (just by inference) from his reactions. It's okay for that doc to waste time bashing AP and your decisions, but not to spend the time explaining possible side-effects your Dad might also experience on mtx?
I used to be frightened by god-like docs who used these kind of intimidating tactics. Now I just see them as close-minded and I don't want to work with a doc like this. When I asked my PCP, a couple years ago, if he thought my heart palpitations might be hormone-related (he turns his back to me to type on his laptop that is on a shelf while I speak – now that's charming!), he remarked, without looking at me…”Why do women always think everything is related to hormones?” Well, turns out the palps were related to hormones…my thyroid!
Docs should be our partners in health…gone are the days of Marcus Welby MD when a doc had all the time in the world to put a patient at ease. Now they have 10 mins to listen to symptoms, make a dx and write scripts for tests and meds and little time to field patient concerns. This is why it's more important than ever to find a doc who will work with us and hear our concerns. If they can't provide this service, then it's okay to fire them. I think the older generation has a tougher time with this, because we were more used to the Marcus Welby kind of docs. Heck, when I was a kid, the doc would visit the house in the middle of a snowstorm if one of the family was sick. nowadays, it's all “business” and the patient is just another “client.” So a doc who listens and doesn't belittle our concerns is a real gem! And…sometimes…we have to pay out of pocket for that service. I pay my Lyme doc $325 for a consult…half of which I reclaim from insurance…but I get 45 mins with him every time I go. I figure I'd spend $162.50 on a nice outfit for a special occasion, so why not my health?
You must be concerned for you Dad, 1-2-b. Hopefully, your example will be all that it takes for him to consider his other treatment options. 😉
Peace, Maz
[user=782]LMH[/user] wrote:
I'm showing liver problems on AP. Notice, I didn't say BECAUSE of AP, but my physician (PCP) thinks so.
AST was pretty high. Think there's any connection with mino/liver problems or maybe inflammation/liver problems? Thnaks, LMH
Hi LMH,
You'll find a PM in response to yours with regard to this.
Peace, Maz
Maz, you are right about the docs and the time they spend with us. It is so very hard to find one who isn't just worried about the money aspect of it all and one who is genuinely concerned for our well being. Thanks for your concern for my dad. 🙂
Amen Maz,
I'm a little late on this thread, but its nice to hear someone put a few Dr. in there place, yes Women, tend to know there bodys pretty well, heart palpitations can be caused from Thyroid. Opray talked about this on her show last week she said that she finaly had to get a Dr. advocate, to tell all 5 of her Dr. to get together and find a reason for her heart palpitations, finally a 6 dr. came up with a thyroid test.
You know Dr. do alot of school , but its still their opinion..We have the right to expect a Dr. to listen & work with us.
NicoAlways remember, Dr.'s are humans just like us – . They only know what they have studied – read in books. We know what we have lived. [/color]
I finally brow beat my Rheumy enough for him to consult with a Dr. that is studying the use of AB (AP) in arthritis today and only then did he agreed to give me Doxy but only IF I continued to take th MTX. Fortunately for me, I had already had a appt with Dr. R. K. in Lufkin who had given me Doxy and instructions to get off the MTX and prednisone.
I'm nearly 18 months on AP and I am doing so well, I plan to join Curves for Women this week to regain mussel tone lost in my thighs due to arthritis in my knee for the last 2 years.
I have not been to see a Rheumotologist for 15 months – don't need him – but I am toying with the idea of offering myself up to him as a case study. He won't have to do anything but run his/my blood work every now and then to see the effects of AP. (Now would be a good time to mention that after he put me on Pred and MTX – he was considered putting me on one of the biologic because the inflammation was out of control.) I would do this with the hope that one day he would use AP to treat arthritis. BTW – you do know that Minocycline is an approved drug in the treatment of arthritis – approved by the American College of Rheumotology. Please do not forget that – it is the proof you can use to hit you Dr. over the head with! :roll-laugh:
Bottom line – there are Dr.'s who will treat arthritis with AP – you can get a list from members of this board. You are for your health care than the Dr. is. It is, after all, your body, your life – choose well to be well.[/color]
To add to Texas T and some other empowering responses, I thought it worth quoting from Dr Brown in The Road Back (now included in The New Arthritis Breakthrough book):
“There are three reasons I feel that family practitioners are the best source for the treatment of patients suffering from rheumatoid arthritis: they are the physicians most likely to detect the diease early; they are inclined by their training toward safe remedies; and they are in the best position to provide continuity of care” (page 246, The New Arthritis Breakthrough)
“Family physicians are no strangers to monitoring and managing these kinds of variables…… They are careful not to use dangerous drugs. A busy practioner simply does not have the time to monitor risky medications. Until now, the rheumatologist's role was essentially to guard against kidney, retinal, bone marrow, liver and lung damage” (page 251, The New Arthritis Breakthrough)
These are some of the reasons why we often find family practioners/holistic doctors much more open to AP and why many of us choose to go that route. Indeed many highly experienced AP Docs on the RB list are family practioners. As Maz said, Doctors should be our partners in health and, sometimes, Family Docs are where we find the potential for such a partnership. 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)Just like maz said we need more Dr. Marcus Welby's and believe me they are a dying breed.
My blood pressure went a little high on me so I called my Rumy, he said call your primary physcian, well I have a hand Dr.,skin Dr., gynecologist Dr.,.,A Gastro Dr., A Lung Dr., A foot Dr., & a Rumy Dr., Well out of 7 Dr.'s you would think that one of them could change my blood pressure medicine, because its all related to Scleroderma which is what they see me for. Its got to be for liability or job security, one or the other.:Nico
OMG YES, so this last time I just didn't bring it up, and he must of forgot that I told him I was on AP. Well I didn't lie, he didnt ask. I guess if he throw a fit I will find another one, I really don't know what he does for me anyway, he put me on Methotrex garbage made my hair fall out! I should of thanked him for that LOL the worst part he didn”t tell me what he was putting me on, he just said take 3 of these a week!, oh by the way take some folic acid with them !
Boy I learned that the hard way, everyone NEEDS to be involved with the Dr. , it is your life, and keep them in the room with you untill you are finished talking with them, too many of my Dr. try to run off to quick!Nico
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