Anyone with longterm RA successful on AP ?

[kate murrell]

I would love to hear from anyone with long standing RA who has not got an obvious Lyme connection but is doing well on Minocin.

[lynnie_sydney]

Kate – I did brilliantly for 5 years on mino alone MWF 100mg – and not even the pelleted minocin that is available in the U.S. but the aussie version Minomycin. I have Palindromic RA – extremely high RF (692) and with a Mother who had the same then developed RA as well as PRA in her 60's. Here's my testimonial. Lynnie

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

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)

[kate murrell]

Hi Lynnie,

Thanks for your prompt reply.
I notice that you are also on Roxithromycin and Cefaclor? What are they and why are you now on Doxy?
I don't know quite what's happening to me.
I, like yourself, put myself onto the regime, in Dec 09 and fortunately have a co-perative doc. I have been interrupted from the Minocin by swine flu and then a tummy bug. I have never had so many bugs!
I also get very upset with strange things going on on my left side- galloping heart, swollen lymph node and weird feelings of compression that come and go, especialy when I lie down on that side. I have just visited Breakspear clinic and the dr commented on my asymmetrical RA. Guess what- all on the left side!
I get small bowel intestinal overgrowth at regular intervals and I have been prescribed Erithromycin to sort that out. I also find Sporanox helps possible fungal complications or strange bacterial forms, but good grief- what on earth do you take when? I worry about the huge mass of things to take and not mixing them. I would dearly like to find a doctor who could communicate and look at the whole picture- not just a dietician or allergist but someone who could talk with other specialists and put together the whole package.

[Rose]

Kate,  So far I'm doing very well on Minocin.  Started out with one a day, but now take a 100mg minocin (from Canada) three times a week. Also I do still take a 500mg of Sulfasalazine on alternate days that I don't take the Minocin.  They had me on four Sulfasalazine a day, which wasn't working, when I found this wonderful website, which saved my life. Also take lots of vitamins and minerals.  Rose

[APbeliever]

Rose,you mentioned you take Sulfasalizine. Any side effects you had with 4 of them. I was told earlier to take it but at the time I thought I had allergic reactions to sulfa drugs and I did not take Sulfasalizine. Recently due to staph infection, I had to take bactrium another antibiotic containing sulfa and I did not have any problems with it. In fact during the first week of bactrim I was pain free. I did research and found out some AP doctors were also treating RA with low dose of Bactrim. Let me know how Sulfasalizine effected you. Maybe, I will just take a few pills a week to calm my inflammation down. I am also using 100mgs of Mino three times a week.

[kate murrell]

Hi Rose,

Thanks for the info.
I too was on Sulfasalasine, 4 tabs daily, at one time and it suited me very well for over a  year. Then I had big problems, although in retrospect, they could have been due to many other things and the sulfasalasine was the scapegoat!
Can you manage just on the Minocin or do you think you need another drug too?
How many tabs of Sulf do you take daily?

[lynnie_sydney]

Kate – didnt want to overwhelm you with my first post and hope that you read the testimonial. That is probably the key info for you starting out and in terms of RA.

If you click on the link at the bottom of my info, the first post in My Personal History thread will tell you why I stareted on a new protocol………it's possibly NOT what you need when you are starting out because there is possibly an aussie version of a Lyme co-infection involved for me and that has required a multiple abx approach. 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)

[Rose]

Hi AP Believer, and Kate:    I was on four Sulfasalazine a day, and after a couple of years it just wasn't doing the job. My Rheumatologist wanted to put me on methrotrexate but I did not want to go there, so did some internet exploring and found this site.

After I went on Minocin I lowered my dosage of Sulfasalazine to one a day, but now I take it only three times a week, on the days that I don't take Minocin. The side effects I had was mainly stomach. And so am now on Prevacid three times a week.

[kate murrell]

Hi Lynie,

So with the possible Lyme connection that you mention, which I also am in the process of being tested for- do you know you were bitten by a tick, or is it possible to get these co-infections through other infectious illnesses?
I'm supposing that if you've ever even seen a tick, then it's possible that you could have unknowingly been bitten but I am also wondering what can be carried in mosquito bites that become infected?
I still wonder if there is anyone out there who is just taking Minocin alone without any other drug?!

[lynnie_sydney]

Kate – it's complicated re the Lyme-like stuff in Australia because it's not even supposed to be here.My doc and naturopath are in the camp that believes these type of infections can be carried by vectors other than ticks. But that's a whole other story…………. 

As I said, I had fab results on mino alone for 5 years. Also, if you go into the Testimonials section on the main site (press Home above) you'll find plenty of people that were on mino alone for RA. Mino is probably the 'gold standard' in terms of classic AP treatment. 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)

[APbeliever]

You know I read someone's story on Amazon about his wife getting cured of RA by getting treatment by Dr Brown 20 years ago when I bought Henry Scammell's book. I hope more people will come forward on this board and tell us that they got completely cured by AP. Anyone?

[lynnie_sydney]

APbeliever – one of the “problems” with this Forum is that the vast majority of current users – now and at any time – are people who are in the beginning, early or middle stages of their journey with AP. The vast majority of those who achieve remission or close to it leave us to go out and live their lives – which, after all, is the primary goal of this treatment. And who can blame them? Many have lost a number of good years to these painful and debilitating diseases that they just want to make the most of their renewed wellbing. That's why we have testimonials to document journies and successes……..even then there are some who find it difficult to write about a time they'd rather forget. Finally, 'cured' is a word we tend not to use here, even Dr Brown didnt. Remission is the aim. 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)

[sierrra]

Me! My problem started in 1999, but I wasn't diagnosed with RA until years later. A blur of rheumatology visits, tests, drugs, pain, fatigue, fear. Liver started to just say no to conventional drugs, and Dr. was open to minocycline when I suggested it–she knew of the scientific studies. Feeling great after 3.5 years on mino. Doing yoga, lifting weights, working 32 hrs/wk, keeping up with a busy life. Happy. Recently went from 200 mg/day to 100 mg 3x/wk.

Sierra

P.S. My prognosis wasn't good–anti-CCP test (predictor of severe disease) was a strong positive. My mom is disabled by RA. I was skeptical about this working, but it did.

[kate murrell]

Hi Sierra,

Thanks for that!
So you took Minocin 200mg in 2 doses every day/ once a day for that time and no other RA drugs?
Did your RA come on suddenly/gradually?
Sorry to keep asking you questions but it's so heartening to know about you!

[sierrra]

[user=1615]kate murrell[/user] wrote:

Hi Sierra,

Thanks for that!
So you took Minocin 200mg in 2 doses every day/ once a day for that time and no other RA drugs?
Did your RA come on suddenly/gradually?
Sorry to keep asking you questions but it's so heartening to know about you!

I took 100 mg in the a.m and 100 mg in the p.m. every day. The only other medication I took with it was ibuprofen (OTC). It came on gradually, with intermittent symptoms for a couple of years (positive ANA from the start), then stronger symptoms that didn't go away. Positive RF at that point.

[Author]

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