Contacting FDA web site to voice antibiotic use

[Dee]

FDA has a web site where people can file comments.  Has anyone filed a comment on getting approval and acceptance of antibiotics for RA and other autoimmune diseases?    

[Joe M]

Dee,

It would be nice if the FDA had autoimmune diseases as an indication for minocycline and other antibiotics.

However, the FDA is usually not the problem. 

Doctors don't need approval from the FDA for using antibiotics for autoimmune diseases.  “Off-label” prescribing is perfectly legal.  Most of the trouble people have seems to be finding a doctor who is willing to prescribe it for RA.  Fortunately the Road Back has a large list of doctors who do prescribe minocycline for RA.

The American College of Rheumatology (ACR) recognize minocycline as a DMARD, and the government (NIH) has sponsored double blind studies (MIRA) that prove its effectiveness. 

If you need help finding a doctor to prescribe antibiotics, the board admins will help you based on your location.  Hope this helps!

Joe

[kat]

But FDA approval would certainly help, especially for those who need IV abx. Insurance will not pay for IV abx if its coded for auto immune illness.

My ex doc thinks AP is bad medicine but if the FDA recognized it you can bet his opinion would change.

Just my 2 cents.

[A Friend]

[user=420]kat[/user] wrote:

But FDA approval would certainly help, especially for those who need IV abx. Insurance will not pay for IV abx if its coded for auto immune illness.
My ex doc thinks AP is bad medicine but if the FDA recognized it you can bet his opinion would change.
Just my 2 cents.

Kat,

You may already be aware of this:  When you see an AP physician, that physician can send a blood sample to Dr. Brown's old lab that is still in operation (or to another lab which  AP physicians are aware of that is knowledgeable/capable of doing this type of testing) and learn if there is mycoplasma infection.  There a type of mycoplasma testing that is even accurate if one has been on abx for a while. 

If the mycoplasma testing is positive, then private insurance and even Medicare usually pay for IVs to treat this condition when they are submitted as “treatment for mycoplasma infection.”  The IV cleocin and clindamycin are an FDA approved treatment for these infections. 

Also, minocycline/Minocin, et al, are approved by FDA for use in treating rheumatic illnesses. 

Best of luck to you,

AF

[kat]

Yes, I am aware of all of that. But there are many physicians that think the mycoplasma testing is a joke. Then what is a person supposed to do? I have 2 family doctors to pick from in my area and neither one of them believes in AP or testing for mycoplasma.

Fortunately my rheum doc is not so closed minded, but if not for him I'd be up a creek without a paddle. I am sure there are many others in that same situation. So once again, I am just saying that FDA recognition and/or approval would be huge.

[Bill]

Your assuming the FDA would be our friend here. That is a very large assumption. My years of interest in alternative medicine and much reading has led me to the conclusion that your assumption, unfortunately may be  incorrect. Certainly this is one of the reasons most AP Docs prefer to fly under the radar. Make no mistake here, we should fly under the radar as well for now.

 If this type of treatment is ever approved it will have alot to do with Dr. Marshalls work and science. But  I would not hold my breath. And I truly worry they may try to shut him down as well.

 Sometimes it is best to let sleeping dogs lie. At least until a great deal of people, funding and research are clearly on our side in an organized, effective and efficient manner.

Be Well,

Bill

[kat]

Personally, I wasn't assuming anything. I agree that the FDA would probably not be on our side. I was only pointing out that it would be to our benefit if the FDA were on board.

[A Friend]

[user=15]Bill[/user] wrote:

a) Your assuming the FDA would be our friend here. That is a very large assumption……Make no mistake here, we should fly under the radar as well for now.

b) If this type of treatment is ever approved it will have alot to do with Dr. Marshalls work and science. But  I would not hold my breath. And I truly worry they may try to shut him down as well.

c) Sometimes it is best to let sleeping dogs lie. At least until a great deal of people, funding and research are clearly on our side in an organized, effective and efficient manner.

Be Well,
Bill

Bill,

As usual, yours  seems to me to be a wise voice of reason. 

About what I labeled as point “a)” in your post above, I have been hearing people having served in high places, and having been involved in the processes of testing, approving, funding, etc. speak out in interviews and through other mediums, expose many problems.  An interesting recent eye-opening commentary was from a former vice-president of a pharmaceutical company, who wrote the book with “whistle-blower” in its title. (A CD is available from Peoples Pharmacy web site.)  Others, in the medical community, I've heard speaking out fairly recently have been highly respected medical professionals joining ranks with a peer who has written a book about heavy-handed, repressive practices.  And another instance, some of the Quackbusters' antics (maligning dedicated, effective healthcare professionals for years)  have been exposed in court, and they themselves have been reprimanded by judges in a case that was tried in court.  So, it appears there may be a “leak in the dike” that has dammed up the kind of help and information many of need and would benefit from. 

Point “b)” you make is very interesting.  I've been hoping and praying that the seemingly well-planned, methodical methods/phases being recommended by Dr. TM for patients' physicians to prescribe and use will prove to have outstanding results and carry heavy positive weight on the burden of proof needed.  

Point “c)” is well taken.  I believe, in keeping with this suggestion, a good place for our attention is to continue to search, read/study, and become aware of those medical entities who are now day by day working (as Dr. Brown worked) to turn what remains wrong with our medical community “right side up”, especially in areas of preventive medicine and chronic illness treatment. (Now hear this, I believe much is RIGHT with it.)  I've been tediously reading such as this for about 15-16 years now, and have been amazingly seeing much new-to-me information that making (or can make) a tremendous difference in our illnesses —  ironically, often being reintroduced and attributed to outstanding, renowned scientists from many, many years ago. 

Thanks again, Bill.  I appreciate and agree with your post.

AF

[Bill]

A Friend,

 I'm appreciative of all the good information you continue to provide for us all. We do need to continually research the old and new science and information, just as you have said. In that way we will continue making great progress towards optimum health.

Thanks for all you do, and thank you so much for the kind words, as well.

many blessings to you,

Bill

[Author]

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