Research and Changing legislation

[myoungkruse01]

     Hi, I am a college professor and head women's basketball coach at Hamline University.  I have three daughters, Natasha, Taylor and Jadyn.  My mom gave me the information for Christmas and what a present it was.  I went to a doctor in Iowa and after meeting with them, going through the therapy, and reading all the testimonials; I thought what can I do.  The doctor told me change in the research.  I have a doctor and some professors that have started working on this already as we speak.  We will need help from all of you along the way to get this changed and I have heard people have tried in countless ways in the past.  The lady that is assisting me is very connected and has had things changed.  Let me know if anyone has information on this area and as to what obstacles have been enountered when trying to make this a standard practice for RA patients in the past. 

     I will get more information to you as we further in our research.  So far, so good:)

[Maz]

[user=554]myoungkruse01[/user] wrote:

We will need help from all of you along the way to get this changed and I have heard people have tried in countless ways in the past.  The lady that is assisting me is very connected and has had things changed.  Let me know if anyone has information on this area and as to what obstacles have been enountered when trying to make this a standard practice for RA patients in the past.  

   

Hi Melissa,

This sounds wonderful!  Can you give more details on what the doctor and professors are doing in terms of “changing the research?” Are they convinced and motivated, because of your personal success with this therapy?

As for obstacles encountered when rheumatoid patients ask their rheumies for minocycline to treat their RA, scleroderma, Lupus, MCTD, CFS, FM, etc, etc…a very few will prescribe it without some comment like, “it's not proven” or “it won't work.” Here on the bulletin board, we hear this all the time, in spite of the MIRA trials proving its efficacy and this simple drug being approved as an ACR (for off label use) DMARD.

Some are told it's only effective late in disease and some are told it's only effective early in the disease. Some are simply refused outright and feel ridiculed for asking. As you can see from other threads posted only today, some patients feel they must even travel to Mexico to hopefully get minocycline over-the-counter, but then fearful they will be able to bring it back over the border.

The other problem is the extortionate cost of Wyeth brand name Minocin, now sold in acne packs and distributed through Triax for teens, forcing chronically sick individuals to purchase this from Canada for a fraction of the cost. Brand name Minocin is often preferred over generic minocycline due to its pelleted capsule version, which is a slow-release formula with improved absorption and none of the generic fillers that some can't tolerate.

These are just a few of the obstacles faced by rheumatoid patients who choose antibiotic therapy and must seek out AP physicians, sometimes traveling great distances in order to find a doctor who believes in the efficacy of antibiotic therapy.

I'm sure others here can share their personal stories of the obstacles they've encountered. In my own case, my RA was triggered very quickly on the heels of getting Lyme Disease. In my mind, I knew there had to be an infectious connection and I didn't waste time with a rheumy and went straight to a Lyme Literate physician who has brought my very severe RA to the 90 or 95% improved point. There is no doubt in mind that antibiotic therapy works. 😀

How are you doing now, Melissa, after your trip to Iowa for the IVs? Is your RA improving well?

Peace, Maz

 

[amyid]

Hi Melissa,

I live in the Twin Cities, too!  I am a 34 year old woman, diagnosed with RA (anti-ccp high positive) in March.  I go to a very well respected Rheumatology clinic.  (My GP, ENT and Immunologist) say it is “one of, if not the best”.  Several of the Rheumatologists at this clinic are listed frequently in the MPLS/ ST. Paul magazine as “Top Docs”.  My doctor is very kind, extremely intelligent, etc.  However, when I approached her about the information I had found here at Roadback and numerous other sources, she told me Minocin was used by some of the older docs as an anti-inflammatory, but that there are “much better” drugs now.  She added that I could try Minocin but it doesn't work well.  She also said that my RA was auto-immune and that it wouldn't be fixed with antibiotics.  I followed my instincts and now have an appointment in IA to see Dr. S in Aug.  Do you have RA?  Have you been helped since seeing DR. S?

I was (and at times still am) confused.  Why would a prominent clinic/doctor shut down the success others have had with AP?  I understand they can't base scientific practice on patient claims; but there are studies and trials that substantiate many stories.  Also, there are  microbiologists and others who have found mycoplasmas in many people with “auto immune” diseases….

My husband and I have discusses this over and over.  We've come to (our opinion) the conclusion that  it is a lack of critical thinking.  If some people are taught that RA is a result of an overactive/malfunctioning immune system with no underlying ineffective cause and then someone suggests otherwise, they simply refuse to entertain it.   They are taught to see symptoms, run tests, make a diagnosis and dispense drugs.  Anything requiring a critical thought just doesn't work and they stop there.  We also believe in the pressure of pharmaceutical companies and the funding they provide.  If their big money drugs are shown as a amazing treatments in the “now” (neglecting to focus on their side effects) that's what they push.   Who really knows why the resistance is there for some and others see the potential to help and save lives?

If there is anything I can do to help you and your colleagues, please contact me.  I am desperate to put my RA on the back burner and help others do the same.

Peace,

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

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