newby……seeking assistance in finding help..

[mike.parker]

I was diagnosed in 2007 with RA. Iwas placed on methotrexate shortly after. I have no joint damage at this time, however the methotrexate has stopped working and they wish to put me on humira due to my many flares through the winter and spring. I by chance happened on this site and started reading and realized I had contracted walking pneumonia prior to my diagnosis of RA. I immediately contacted my Family Doc and scheduled a PCR test, which came back Positive. He prescribed me a 14 day supply of monicycline, standard protocal I am told. I did provide him with the AP packet. When I contacted the nurse for followup info she said he did not want to see me back after the fourteen days that every thing should be okay. I have no doubt what so ever that this AP will put me in remission, I just know it will if I can find a Doctor that will work with me, I have taken three doses of the monicycline and I already have noticed my stiifness is less and My hands aren’t tender and red. If anyone out there knows of a Doctor in the state of North Carolina where I live it would be wonderful, Virginia, South Carolina, or Tennessee would work also.
Thanks
Mike

[lynnie_sydney]

Hi Mike – welcome to the Road Back, though sorry you had to find us! Walking Pneumonia (as I understand it) is the name given to a mycoplasma pneumoniae infection. It certainly sounds like there is a connection between what you have had infection-wise and your sudden onset of RA. Very telling also that you’ve noticed some improvment after taking minocycline. One of the U.S. Volunteers will be happy to send you a list of AP Doctors closest to the areas you cited and (if you want it) also a list of the most experienced AP Doctors nationally. Good also to have a look around the information at our main site (click anywhere on the banner above to access, if you havent already) and also good to read The New Arthritis Breakthrough by Henry Scammell (available through amazon) for a good foundation to this approach to treatment. I’m in Sydney Australia and just wanted to welcome you initially. 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)

[mike.parker]

thanks very much for your response…..I would greatly appreciate a list of AP doctors in my area….Will they post them in response to this post or do I need to provide them with my contact info????
regards
Mike

[Susan LymeRA]

Mike, low dose minocycline or doxycycline is a standard “off label” treatment for R.A. Any doctor should be willing to prescribe it for you longterm. Even the original rheumatologist I saw, who screamed at me when I asked for this treatment, did give it to me. He gave me 99 refills. 🙂

You tell your doctor you would like ongoing antibiotic therapy. Or tell your rheumie. He will try to talk you out of it, but the AP is much safer than the biologics and you can say you simply want to try that which is safe first. Then hot foot it to a doctor who actually believes in infectious causes, because you may find you have other complications as well.

I don’t have the list of AP docs, but as Lynnie said, someone will provide them for you.

Best of luck!! If you are near Fairfax, VA, I see a rheumatologist who believes in infectious causes. She is double degreed. She also is an infectious disease doctor. She is very good!

[lynnie_sydney]

Will they post them in response to this post or do I need to provide them with my contact info????

Probably will send in a Private Message (PM) through the Forum. To access, you’ll just click on ‘1 New Message’ above. 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)

[mike.parker]

4 HOURS AND 48 minutes from fairfax Va, but I would be willing to travel that far if I have to. I have no doubt this will work for me….especially since i tested positive for mycoplasma pneumonia, and my flares were all over not just isolated to my hands and feet which always seemed to puzzle the doctor

[Joe RA]

Hi: Mike, I like your positive thought on AP working for you, thats your first building block to your remission. Humira and Enbrel did’nt work for me but AP did, with a good healthy balanced diet, staying away from all factory made food and only natural for my needed vitamins. I could be wrong but I seem to remember someone on this forum seeing a AP doc in Ashville NC I hope I am rigth. The Best To You, …Joe RA….

[mike.parker]

thanks alot joe….and yes I got a list of a doc in asheville

[Maz]

@mike.parker wrote:

thanks alot joe….and yes I got a list of a doc in asheville

Hi Mike,

I saw that Diana had replied to your apdoc email request this morning. The south has a real dearth of AP or Lyme docs (these also treat with longterm abx therapy), but the further north you go, the more there are, in general. Some of these docs have quite long wait-lists, like the rheumy Susan mentioned in Fairfax, VA, and are out-of-pocket, but this is fairly common, unfortunately.

Mike, Susan is right….you should be able to get minocycline prescribed for RA as a DMARD. Many docs are reluctant, but the choice is yours, because it is listed as an American College of Rheum DMARD. It just means that until you can get to an experienced AP doc that you’ll have to navigate things alone. (Doses mentioned at following link – 100mg BID – is generally way to high for RAer with a lot of inflam).

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

If you require any further physician contact info, let us know.

[mike.parker]

my wife just called and my family doc told her i needed to see someone else he wouldn’t treat me long term with the mincycline…..so much for helping a patient….

[mike.parker]

Thanks Maz I will use your link to convince my RHEUMIE to treat me with AP I fortunately have not had a great deal of inflammation until these last flares and I had the most inflamation ever, but it has subsided and I actually feel pretty good. I am not sure if the monicycline has had time to work but it is a raining wet day and I usually have some minor aches and sharp pains on these days but not today, and I noticed my hands are not red like they have been lately, thanks bunches for all your help
Mike

[Susan LymeRA]

He would have been no help. Consider it a godsend and pray for guidance to the right doctor.

[Maz]

@mike.parker wrote:

Thanks Maz I will use your link to convince my RHEUMIE to treat me with AP I fortunately have not had a great deal of inflammation until these last flares and I had the most inflamation ever, but it has subsided and I actually feel pretty good. I am not sure if the monicycline has had time to work but it is a raining wet day and I usually have some minor aches and sharp pains on these days but not today, and I noticed my hands are not red like they have been lately, thanks bunches for all your help
Mike

Hi Mike,

The following link may provide further ammo to present to your rheumy, because Dr. T who authored this article last Fall, is a rheumy in Boston and actually authored the MIRA (mino in RA) trials that helped to get mino approved as an ACR DMARD:

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

I also just sent you a PM with a new Integrative Physician listing for Raleigh. He’s actually a Lyme Literate MD, but these guys are great alternatives as they aren’t afraid of using the antibiotic artillery to get us well again. Just thought it might be worth a try if Dr. B in Asheville isn’t as close or doesn’t work out for you.

[mike.parker]

thanks again Maz. I called my family Doc and requested my blood work for the mycoplasma pneumonia and I intend on taking it along with the other article and asking my rheumie to provide me with the AP treatment….I have a fourteen day supply and my appointment with my rheumie is on the 19th of this month…..I should know if the minocycline is helping by then I hope….i honestly beleive my hands already look better……also my sed rates have always been kind of low….which I am hoping will allow me to not go thru the herx….but if I do it will be okay because as I have said this is going to work for me….

[judy cash]

Mike,
I would highly suggest seeing an “AP” doctor if at all possible. They understand about using antibiotics for RA. The sooner the better also, so if you could get a doctor to give you the script, until you could see an AP doc., would be good……I wish you the best of luck. I have been on AP for two years now, for RA, and luckly I am doing really well. Look on this Forum for my post, just this week end, titled; ” I FEEL LIKE INSPIRING OUR NEWBYS”, it will give you a bit of my personal story. 😀
Judy

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