How to improve my AP?

[Mazensmummy]

Hi everyone,

I have had RA since 2008 which seems to have been triggered by some sort of virus that my doctor couldn’t figure out. At the moment I am living overseas, probably for another year and don’t have access to an AP doctor.. I know it’s reckless but I’m basically just treating myself because I can just go to the pharmacy and buy most meds.

At the moment I am on Minocycline 100mg 3 times per week and 5mg of Prednisone. I just have a couple of questions because I feel there might be more I could be doing to improve my health.

1) I am not taking probiotics but I am having one Activia drink daily… is this enough?

2) I can’t get oregano oil here but I don’t mind eating raw oregano or drinking it as a tea? Is it still as effective as a natural antibiotic in these forms? Do I need to eat or drink a lot?

3) What extra antibiotics could I possibly take to move things along and at what dose? I was thinking about Clindamycin?

4) I have been reading conflicting posts about bacteria becoming resistant to Minocycline and this worries me a bit, is this really possible, and what can I do to prevent this from happening?

Thanks so much
M

[lynnie_sydney]

Re the probiotics: it depends on whether you have a predisposition to candida – I dont have a predisposition to candida and wasnt on a probiotic for the 5 years I pulsed 100mg mino on MWF. However, I always think it’s better to be on the safe side as prevention is always better than trying to fix a problem once it’s arisen.

Re the oil of oregano. Take care because it is super strong – I couldnt take it because of the immediate extreme fatigue and flu like symptoms even a small drop produced in me within an hour. If you want to try it, you’ll be able to purchase it over the net. But it is not the same as the herb that is used in cooking

It is important not to confuse Oil of Oregano with common oregano that is used as a spice for cooking. Common oregano is typically Origanum Marjoram, while Oil of Oregano is derived from Origanum Vulgare. http://www.homeremediesweb.com/oil_of_oregano_health_benefits.php

Tetracyclines are not known for producing resistance. The only caution that Dr Brown gave was a rotation of drug every 4-5 years even for 6 months. Both subjcts are covered in this section from our main site:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Drug-5677

Finally, it is good to remember that this is a slow road to wellness and improvements can be small and take time, so patience is the key.

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)

[Parisa]

Mazen,

When did you start the mino? How have you reacted to the Mino? Have you had any worsening of symptoms (herxes) are you noticing any improvement? I would definitely add in a probiotic. As Lynnie mentioned, it’s much better to prevent than to have treat. Have you looked at your diet? Tried removing gluten or dairy to see if they make a difference?

[fastspinW]

M,

Are you saying that you are taking Prednisone on your own? Without supervison from a doc?

All best,
Winston

[Mazensmummy]

I started Minocycline at the beginning of Dec 2011, I do have herxing but it’s very bearable and my symptoms are improving a lot. I haven’t made any diet changes yet but do eat a healthy Mediterranean diet. I am taking Prednisone 5mg without a doctor’s supervision. I was originally prescribed 30mg by my doctor 6 months ago but I have gradually tapered myself and stopped seeing her, she was very hot-headed and hard to deal with and I don’t actually think she is in the country anymore.

Thanks all

[lynnie_sydney]

I started Minocycline at the beginning of Dec 2011

MM – this is incredibly early days for you – many people at this stage have only just started a herx response. Congratulations on tapering the pred so far down and be cautious about this – most say the last 5mg is the most difficult. If you go to the front page of General Discussion and type ‘weaning pred’ into the search box, alot of past discussion will come up and lots of info on how others have successfully done this.

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)

[fastspinW]

MM,

I must admit that I am intrigued by your comments on area doctors. Are there really places in the world where doctors are harder to deal with than the USA? Or do you think you have just had bad luck with the ones you’ve gotten. And, if you don’t mind me asking, what country are you in where they allow drugs like prednisone without a script?

All best,
Winston

[Maz]

Hi MM,

If it would help, I could send you Dr. S’s contact info to ask for his professional insights. Dr. S. trained under Dr. Brown and is now semi-retired, has seen thousands of rheumatic patients and is still seeing them for AP. He is also really kind about freely answering patient queries about the therapy via email and will work with local docs anywhere in the world who want to consult with him on the therapy.

If it was me – and this is just a personal case scenario – and I had just started AP two months ago, was seeing some improvements, but still herxing, I probably would wait for herxing to settle down for a good amount of time (several months). Changing too much in the early days can result in treatment failure, especially if trying to wean from other drugs. By “treatment failure,” I don’t mean failing the therapy altogether, but winding up in a good deal of pain from more herxing and drug rebound and having to go back to the drawing board to re-assess and start over. This is a really “slow” therapy and too many changes at once can really stir things up.

Some folks with RA do reallywell on 100mg mino MWF and, if this dose seems to be working, then it’s always best to be on the lowest possible dose when there is a good effect. In other words, if it’s working, then I wouldn’t change a thing. If, after about 5 or 6 months I wasn’t seeing any improvements or very slow improvement then I’d probably check with my doc to see if it would be okay to increase the dose to 100mg BID MWF (slowly). Alternatively, I would keep my mino dose the same and ask my doc if could add a second, pulsed abx. If IV clindamycin wasn’t available, I probably wouldn’t choose oral clindamycin, because it’s hard on the gut and there is a greater risk of C. diff (especially if a good hefty daily dose of probiotics wasn’t being taken). Instead, I’d probably use an oral macrolide, like azithromycin or biaxin. However, if I was still weaning from other drugs, then I probably wouldn’t change a thing until this was done and I was through the worst of rebound. It’s never a good idea to change more than one thing at a time with AP, as it just becomes too difficult to discern what is causing what, if that makes sense?

[Mazensmummy]

Thanks very much everyone for your answers, I really appreciate it – and sorry for my late responses always! I read on here a lot but like to wait til the house is quiet before responding so I can think lol. I live in the West Bank Palestinian Territories, I had a rheumy from France who was a volunteer, but she was honestly intimidating and would shout at us if our phones rang or if anyone other then me tried to speak. I think she also hasn’t come back since the whole UN bid thing… I had another rheumy but I gave up on him after he didn’t show up for the appointment and didn’t explain medications to me properly. When I took Prednisone for the first time I had no idea what it was and I was on 30 mg and when the boxed finished, I just stopped taking it and felt horrendous for 3 days I think. There is another rheumy I can see who is far away in Ramallah and the French doctor told me not to see him and that he is a criminal. Lol so that’s my options. Maz, that would be perfect if you could msg me Doctor S’ contact details, thanks so much and thanks for the advice everyone it makes a lot of sense, I will wait until I finish tapering the Pred and take it from there. I am really happy with the improvement so far.

[Maz]

Mazensmummy”Maz, that would be perfect if you could msg me Doctor S’ contact details,

Will send Dr.S.’s contact info in a PM. 🙂

[PhilC]

Hi,
@Mazensmummy wrote:

1) I am not taking probiotics but I am having one Activia drink daily… is this enough?

It’s better than nothing, but probably not enough. Also, it is a dairy product– something that’s best avoided.

@Mazensmummy wrote:

2) I can’t get oregano oil here but I don’t mind eating raw oregano or drinking it as a tea? Is it still as effective as a natural antibiotic in these forms? Do I need to eat or drink a lot?

Oregano oil is bactericidal. That means that it could cause some rather unpleasant die-off reactions. I’d stay away from it for now.

@Mazensmummy wrote:

4) I have been reading conflicting posts about bacteria becoming resistant to Minocycline and this worries me a bit, is this really possible, and what can I do to prevent this from happening?

Yes, it’s possible, but don’t worry about it. You could add a second antibiotic to help reduce the probability that it will happen, but you first need to get to the point that you can handle the minocycline. You haven’t been on minocycline for very long, so it may be too early to add a second antibiotic. Also, since you are not under a doctor’s care, you should probably avoid taking any more medication than is necessary.

How do you feel? Are you in much pain?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Mazensmummy]

Thanks, I think my herxing is mild, it seems to stay in the same spot for about a week. At the moment my right wrist is extremely painful… I think it is a herx because with the RA it would normally be on both sides. I have contacted Doctor S and hoping that he will be able to make sure I am on the right track or give me some recommendations. Also my fingers are very stiff, I haven’t been able to make a fist for the last week either.

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