Help – Return of SD

[Parisa]

McManus,

I have sent you a PM

Parisa

[vonni]

Maz,

I started on the Azithromycin 2 days ago and no more dizziness since d/c'd the Biaxin on 6/28.  Hopefully this will work as well! 

[Maz]

[user=2198]vonni[/user] wrote:

I started on the Azithromycin 2 days ago and no more dizziness since d/c'd the Biaxin on 6/28.  Hopefully this will work as well! 

Vonni, all the best with the zith! Zith has been very kind to me and hope it will be your lucky ticket, too. 🙂 Please keep in touch and let us know how you get on.

Peace, Maz

 

[Kim]

Hi Vonni,

Great that you're tolerating the Zith better than the Biaxin.  Zith and Minocin have always been a great combination for me.

Take care…..kim

[McManus]

Dear All,

I got a second opinion from another rheum and she said “no” to clindy IVs, although happy to continue prescribing minocin.  My next plan is to go to my GP, as I find that typically GPs are less rigid and less threatened by non-traditional treatment than specialists, rheumys in particular.  It is difficult not to feel insulted by their patronizing tone re antibiotic therapy and, even though it's tempting to argue and try to convince them that AP made me well until I stopped taking it, it is a waste of good energy, they will not budge.  Still- it does made me sad/mad.  Also, and please correct me if I'm wrong, I don't understand why there still are no large studies proving the efficacy of AP that would convince these doctors- they want to see the science presented in a traditional way.  I know there are small studies out there- but we need a home run with this!!  What is the delay?

Thank as always for reading & blessings to all.

[Maz]

[user=418]McManus[/user] wrote:

Also, and please correct me if I'm wrong, I don't understand why there still are no large studies proving the efficacy of AP that would convince these doctors- they want to see the science presented in a traditional way.  I know there are small studies out there- but we need a home run with this!!  What is the delay?

Hi McManus,

Good question and the simple answer is “funding.” No one wants to fund studies for off-label uses of off-patent, cheap antibiotics. There is just no money to be made. There is, however, a plethora of research emerging tying infectious causes to rheumatic diseases being published all the time. We try our best to include what we find in the RBF quarterly eBulletins to which you can subscribe on the main site home page.

Trouble is, pharmaceuticals are plowing much into researching drugs that can produce huge returns. When Dr. T, in Boston, wanted to run JRA studies using antibiotic therapy around 8 years ago, he was refused support by Wyeth and the general concensus was that minocycline was in direct competition with their new blockbusting drug, Enbrel. You can read a bit about it here:

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/255.html

Unfortunately, a good deal of research money comes from Big Pharma and they will only invest in research that makes good business, profit-oriented sense. I don't think it's a conspiracy…it's just business as usual. 

While Road Back would love to have the funds to invest in more studies as was done with MIRA and the Minocycline in Early Diffuse Scleroderma trials, these studies involve many volunteer man-hours of fundraising, tens of thousands of dollars, and researchers willing to do the research. Road Back would need some pretty generous donations of the large endowment type in this sort of scenario and, unfortunately, with the ecomony as it is, donations have been sadly down in recent times. Fortunately, however, there are physicians out there who absolutely do believe in infectious causes and the efficacy of antibiotic therapy for rheumatic diseases. So, if the search for a doc to help you becomes too much of an effort, let us know and we'd be happy to send you a list of experienced docs to help you.

Hope that explains a bit…there is more info in the Henry Scammell books, too, regarding the medical politics involved and why rheumatic disease is still considered idiopathic and just an immune system gone errant.

Peace, Maz

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