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I am due to see my Rheumatologist in 2 weeks and I want to put the case for AP as best I can. I'm trying to put together a “briefing” for both my Rheumatolgist and my family doctor on why I should be put onto AP however I'm not a doctor and I'm struggling with a lot of the terminologies.
I know based on previous conversations that I am going to struggle convincing my Rheumatologist and that if I start quoting medical terminologies etc I feel she is going to “eat me for breakfast”!
I'm used to selling ideas and concepts as thats what I do for a living however I feel I would be better placed armed with a concise well put argument in lay terms rather than reams of medical info that I am struggling to understand.
Has anyone else been down this route or would I be better just printing off the info on the RBF webiste?
Thanks in advance
S 🙂
PS I read somewhere recently about some “crystals?” that can be used as a supplement and can also e made into a cream/gel using aloe vera as a base. Please can someone tell me what this is and whether it has been beneficial? Thanks again
Simon – you may have an uphill battle with the rheumatologist. Some of them are pretty closed minded about treatments – especially if they've already recommended something else (which I believe yours has). You can assemble an appropriate Physicians Packet as per info on main site (press Home then go to Education section and Physicians Packet) – but the rheumie may not read alot. You could also take along your copy of the book. Another approach is to cite that Minocycline has been approved by the American College of Rheumatology as a DMARD – as per recommendations in 2008. That may at least get some attention. Link to site is provided below . It is a long document and you may need to pull out the various references to minocycline. I have also given a pdf attachment from this doc which gives a chart showing recommendations for bloodwork intervals with the various drugs (no follow up for minocycline tends to support how benign this drug is in terms of liver function).
Your best bet may be with your GP in all this. And, of course, all you need from your rheumie is a confirmed diagnosis for Dr H to be able to start to treat you – if that is the route you are still thnking of. Best Lynnie
ACR 2008 recommendations on the use of DMARD's in RA: http://www.rheumatology.org/publications/guidelines/recommendations.asp?aud=mem
ACR 2008 recommendations for bloodwork intervals.pdf
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)Hey Simon,
My rheumy refused the antibiotics I asked for, just wouldn't even discuss it. He's now my ex-rheumy.
I did just what Lynnie suggested and printed out the Physician's Pages and a few other things for my family doctor. I also typed a brief, quick-read summary for the top sheet basically stating that I was asking him to prescribe Minocin for my scleroderma and monitor the follow-up labs. When I boiled it down that simply for him he had no problem with helping me. Sadly, he's watched my go from very sick to very well and still doesn't believe in the infectious theory. :headbang: He tells me each time I go in how impressed he is with me because I got myself well, to which I then ask if he would prescribe abx for another patient that walks in with my symptoms? He continues to say, “no, that's not what they were taught in med school.” :headbang: I'm not done with him yet. :roll-laugh:
Good luck, Simon.
Take care……kim
Thanks Lynnie, both these documents are really useful and I am to use both of them in my “pitch”!. I feel I need to be able to quote the hard facts as if I get caught up in the medical terminology then I know I will struggle.
I will keep you posted
S 🙂
Thanks for the feedback Kim. My thought process is that I am going to try and convince my rheumatologist and my family doctor that I can be their “guinea pig”. Neither of them have anything to lose and when the AP works they can then sell the concept to other sufferers. That's my logic and I hope I can convince them both.
Fingers crossed
S 🙂
Hi Simon;
I see the others missed your question about chrystals.I expect you are refering to MSM (methyl sulphanyl methane)Use the “search” at the top of the page to find loads of info.I take at least a teaspoon a day as per my doc's orders.You can mix it in a hand cream and lather it on.
LynneIME, MDs don't like to be told to do. But, if you're used to sales, you are likely aware of that already! 🙂
I took the “humor me” approach with my MD. First, he agreed to testing through The Arthritis Research Center (http://www.tarci.net). Then, when the results came back positive, he somewhat reluctantly agreed to prescribe Doxy.
When he asked what sort of research I'd done, I pulled out Scammell's book, Pat Granger's book, and Harold Clark's book. Maybe Brownstein's too.
I'm not sure that approach would work with many rheumies. And, you might have a better chance if you give him/her time to think about it & possibly look over the materials.
You could link him/her to the Brown video and a list of studies. Where's that link to the recent Lancet journal article?
Good luck!
Hi Simon,
Your story is similar to mine, but I am just one step ahead of you so maybe I can help. I have been to 3 different rheumatologists all of whom refused antibiotic treatment. I was then planning to see an AP doctor in California, but they never returned my calls and e-mails. I finally decided I could not wait any longer to start AP, so I researched like mad and approached my family doctor. This is exactly what I brought:
- The Historical Protocol from the RBF: https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184[/*:1t0ll8yq]
- The FAQs from rheumatic.org: http://rheumatic.org/faq.htm[/*:1t0ll8yq]
- This article about the role of Mycoplasma in autoimmune disease: http://www.arthritistrust.org/Articles/Mycoplasmas%20Properties%20&%20Their%20Role%20in%20Autoimmune%20Diseases/index.htm
[/*:1t0ll8yq]
- This article by the same author about treatment of Mycolpasma autoimmune disease (he discusses Dr. Mercola?s protocol which is essentially the same as the Historical Protocol): http://arthritistrust.org/Articles/Thomas%20McPherson%20Brown%20MD%20Treatment%20of%20Rheumatoid%20Disease.pdf[/*:1t0ll8yq]
- This article which is a good summary of Mycoplasma infections: http://www.morgellons-uk.net/?p=467[/*:1t0ll8yq]
- AND MOST IMPORTANTLY, AS KIM SUGGESTED, A SUMMARY. I entitled mine: ?Proposed Treatment Protocol for Katie…? I then outlined in very clear point form what drugs I wanted to be prescribed, in what doses, and when. That way if they don?t read anything else you give them, at least what you are requesting is spelled out clear-as-day for them. If you like I could send you a copy of the summary I made for my doctor as an attachment by e-mail. Let me know. [/*:1t0ll8yq]
O ya…and the good news is…it worked! My Dr. agreed to everything. Her said it was ?interesting.? I am starting the Minocin today, after a 10 day course of Clindamycin ( I had to take oral because the hospital refused to let him order the IVs).
As far as understanding the terminology, I would just read as much as I can from this site and from rheumatic.org and you will probably have enough of an understanding of the whole thing to discuss it reasonably.
Hope this helps, Simon!
Katie
Wow Katie, just want to chime in here and applaud your foresight, attention to detail and very obvious intention:dude:. So glad your doc agreed to prescribe, you so deserved that outcome. 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)WOW !!!!! Katie,you post should be mandatory reading for all the newbies we are getting and who do not have AP doctors yet.This is the best and concice (English spelling?)bit of info that evryone needs.
MAZ,anyway this post could be up at the top of the page just below the RBF info….ad vitam eternan
Lynne[user=31]Lynne G./SD[/user] wrote:
MAZ,anyway this post could be up at the top of the page just below the RBF info….ad vitam eternan
Hi Lynne,
I agree! Katie, you did a marvellous job of putting your case to your doc! We really should have a permanent thread with these sorts of helpful links, although don't forget we also have the section, “How to Approach your Phyisician About Providing Antibiotic Therapy.” Some commonly used arguments are brought up at this link that are worth perusing, too, just to be fully armed. Apologies if anyone has already posted this…rushing here a bit:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/88.html
Katie, well done – you're truly an inspiration! 😀
Peace, Maz
O my goodness Lynnie, Lynne, and Maz…I'm blown away by all your kind words! It feels great to know that I might be helpful to someone else in a similar situation. Thank you all for inspiring me too!
Katie
Some possible strategies you might try:
(1) Forgo rheumie. Appeal to primary physician:
I don't have a rheumie. My primary physician prescribes the antibiotics and Voltaren suppositories that I take. I told him, hey, all available meds for RA are dreadful , and since it's my body, I feel I should have the last say on which poisons I take. He agreed.
(2) Make a pact with recalcitrant rheumie/devil:
I learned this technique from John McDonald, who used to post here. He convinced his rheumie to prescribe the antibiotics as long as he agreed to take Celebrex too.
(3)get new rheumie or primary physician.
(4)Rob a drug store (just kidding)
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