Should I stop AP?

[hopefulRAsufferer]

I have been diagnosed with RA for two years and on treatment for one.  I love the mino and have been absolutley pain free since the herxing stopped (pretty much a full year ago).  My doc and I have been trying to improve my overall health and have had some success.  I have very bad allergies and he thinks I have yeast (a bad gut) and that I need to get that improved.  He advises me to stop the mino and concentrate on fixing the gut.  I am extremely concerned with this!

When should we stop the treatment if ever?  Has anyone else stopped and how has it been?  I know I can start again but I don't want the mycoplasma to ever get an advantage again!

Thanks for your comments.

Hi – your post moved to General Discussion area of the Board where you will be able to receive answers. RB Volunteer

[Goodwife]

I don't have any advice on stopping the mino, but you may be able to stay on it and also heal your gut – if you can, try to see a good naturopathic doc who can work on your gut and overall health with a variety of supplements, diet, etc. and you may be able to heal both at the same time.  Good L uck,

 

Goodwife

[John McDonald]

Hopeful – Road Back AP did wonders for my joints but my gut started working properly after about 6 or 7 months on MP. MP uses, you got it, Minocycline among other meds. Marshall's theory is that our white cell macrophages are parasitized. Since they are supposed to be the first line of defense our GI tract is loaded with macrophages. But once they are parasitized by CWD-bacteria then they can't do their job against yeast or whatever. I haven't been inside there to look (no matter what my colleagues say) so I can't validate the theory. It seems to be very common for rheumatic patients to have GI tract issues. I did. For years even before I had RA I was striking off foods that I could no longer eat because of evolving food sensitivities. Now my gut works very well thank you and I don't even take probiotics anymore; I haven't needed them for a couple years now though I still take antibiotics. So maybe Marshall is right. Clear the bacteria and the immune system will then do its job.

 

[greeno]

Hi John,

What's MP?

[Maz]

[user=562]hopefulRAsufferer[/user] wrote:

When should we stop the treatment if ever?  Has anyone else stopped and how has it been?  I know I can start again but I don't want the mycoplasma to ever get an advantage again!

 

Hi Hopeful,

I was flicking through The New Arthritis Breakthrough, last night, and happened upon this section on page 269:

“The length of time patients require in treatment can vary widely, depending primarily on how long they have had the disease. In the most entrenched and recalcitrant cases, it can take up to thirty months from the beginning of therapy until the patient clearly turns the corner toward improvement, and the achievement of lasting remission can take several years.

Once the blood begins to look good, the anemia is corrected, the rheumatoid factor is down, the sedimentation and hemaglobin are where they ought to be, and the mycoplasma antibodies are beginning to peter out, I know the patient is close to remission. The antibodies are probably the key indicator; they start high, rise with the herxheimer reaction, and then begin to fall as the therapy is continued. Even if the progress toward recovery should turn downward again for a short time, the disease doesn't ever go back to the beginning, and if a situation begins to slide the physician has plenty of time to retrieve it before the patient loses any substantial ground. I always keeep up the treatment until all the blood tests look good and stay there for a reasonable length of time. In the shorter-term cases – and short term doesn't necessarily mean less severe – complete remission can be achieved in less than six months.”

It sounds as though Dr Brown kept a close watch on mycoplasma antibodies. If your blood work is all normal, otherwise, then getting these tested might help in your decision.

What mino dose have you been on to reach your symptom-free state? If you've been on daily dosing, for instance, you might ask your doc if you could pulse dose for a few months to see how you go. If you were already pulse dosing on MWF, say at 100mg twice a day, you could ask to try lowering it to 100mg MWF to see how you go. Whatever your dose, you could just see keep it at a very low minimum dose to gauge your symptoms and see if any try to make a return.

Sounds like you have a great doc who understands the importance of the gut and healing it to ensure a return to full health. 😀 I understand how you feel, though. I would be just as tentative as you to stop cold turkey. I think I would want to take it slow and remain on just a low maintenance dose for a while. After seeing how that went, I might be more confident about stopping altogether. Perhaps you could mention these concerns to your doc and ask if you could remain on a low maintenance dose while also healing your gut. Then, as your gut is improves, you could calibrate your dose down commensurately?

Just a possible suggestion and think it's how I'd try to figure out when I had been symptom-free for a good length of time. By the way….CONGRATULATIONS on getting to this point! How hopeful is that for everyone here reading your post! Thank you so much for sharing!

Peace, Maz

PS Just thought to add…have you considered or have you already written a testimonial for the main website? If not, would be great to have your story there! :roll-laugh:

[John McDonald]

Greeno – MP is a variant or an evolution of AP depending on your viewpoint about it. It was created by a bio-medical PhD, Trevor Marshall, who was dying at the time of another auto-immune disease sarcoidosis. Marshall reviewed the work of our own late pioneer, Dr. Thomas Brown and also scoured medical papers published since Brown's time for other ideas about why we get auto-immune diseases and how best to treat them. He came up with the Marshall Protocol which elaborates quite a bit on Brown's model and treatment. Some parts are controversial but it seems to be gaining acceptance. The similarities is that both Brown and Marshall agree that the disease is caused by occult bacterial infection.  The key differences are avoidance of dietary vitamin D, the use of more than 1 antibiotic simultaneously, which Brown also did at times, and the addition of a fairly new drug, Olmesartin (Benicar). His disease model is remarkably well described in quite a bit of detail. That much detail in his model is good because it will soon be vindicated or excoriated by other researchers.

I opted to try it even after I got substantial, amazing remission on AP because it was obvious to me that my disease wasn't yet cured and I worried that my remission was fragile. I was clearly susceptible to system yeast infection in my gut because I got one and for a couple of weeks my RA pain began returning. So I wanted to try a more aggressive protocol to see if I could eradicate the bacteria, if that's what I had, once and for all. That was Sept. in 2005. I find that I am still herxing on the MP so I haven't eradicated all yet and yes, it gets tedious. But I have had some remarkable gains since then too so I am still motivated to continue. I argue that my RA is now 97% or so cured. That is my number, completely arbitrary, but it gives a sense of how little joint pain bothers me these days.

Marshall's theory including papers is expounded here http://www.marshallprotocol.com and an easier gateway is here http://www.bacteriality.com. 

[greeno]

Thanks John, very interesting. I'm keen to learn about anything that may heal the Gut, as I too have the yeast beasts.

[John McDonald]

Greeno – I solved my yeast problem at least temporarily by taking a single dose of flucanazole. My yeast symptoms started clearing within a couple of hours and was largely gone by a couple of days. That, and I resumed my sugar free, low carbs sort of anti-yeast diet that is about as interesting as eating sawdust. It took months of MP after that before my GI tract was well behaved, but it did indeed heal. I can still elicit a GI tract herx. My herxing these days tends to be neuro-herxing but by the nature of it, it is hard to use my mind to figure out if my mind or emotions are dysfunctional on a particular day. It is important to know if I am neuro-herxing, as it may not actually be that my wife and everybody is out to get me :shock:, or that the other drivers should be shot and hung. Fortunately I often get some mild GI herxing on the same days. But life in my gut is good these days. There was a point just before getting RA and thereafter when I could no longer eat beef steak. That was for years and years. What is the point of being a male if you can't eat steak? I am happy to say I can chow down on beef with abandon these days, well, except for weight gain.

[hopefulRAsufferer]

Thank you everyone for your posts. 

Maz, I read the quote from the book…I should have flicked through it to get an answer so your time is much appreciated! 

When I first had all my bloodwork done my RA factor was in the mid 200's and I had some trouble walking (mostly in toes).  As I was still nursing we tackled my vitamins, minerals and hormones to try to get my immune system as strong as possilbe.  Once I started treatment 50mg every other day the herxing started and my factor was 298.  I switched to 50mg every M,W,F and that was magic!  The factor dropped to mid 100's and the pain was gone as if nothing ever happened.  Now my RA factor is 68 and I run and weight-lift again.  My yeast in the gut is quite bad though and my allergies/asthma are worse than ever.  We have been manipulating diet (eating no sugar and almost no carbs) and that has helped a bit but he wants me to stop the AP and start on an anti-yeast drug called Nystatin for the gut.

After reading the quote I feel a lot more confident about trying to go without the mino.  My doc says that we can continue to monitor the blood to make sure the numbers don't start to climb.  I will have the mino on hand!!!!

Thanks again…maybe I will post a testimonial.

[Maz]

[user=562]hopefulRAsufferer[/user] wrote:

After reading the quote I feel a lot more confident about trying to go without the mino.  My doc says that we can continue to monitor the blood to make sure the numbers don't start to climb.  I will have the mino on hand!!!!

Thanks again…maybe I will post a testimonial.

Thanks, Hopeful, will be great to have your testimonial and I'm sure many will reap so much hope from your story. 😀

With your RF still at 68 and not yet back in normal range, I'd personally be a little tentative to come off the mino just yet…but this is strictly my own feeling about this and, of course, it's something you must decide with your doctor. Just thought to mention this, because you do hear of people relapsing and having a trickier time turning things around when they start from square one again. Just thought to mention this, in case it might add a bit more 'context' to your decision. 😉 

All the best, Hopeful!!! Please keep us up to date on your progress!!

Peace, Maz

[lynnie_sydney]

stop the AP and start on an anti-yeast drug called Nystatin for the gut.

Hopeful – Nystatin is a wash-out and not a systemic – so will only clear what's there that day. It will not address the cause. I would also consider taking a more dietary approach. If it were me, I would also do this in combination with the mino which is what my AP doc is having me do. If you pulse dose the mino, this should NOT give you any yeast problems, though probiotics are advisable. There is some wonderful info on leaky gut, candida, yeast etc. If you use the search function on this board at the top and type those words in, you'll get some really good posts and links. I'm re-posting a really good one here on leaky gut by Leo Galland M.D. For brevity's sake, I have omitted the references and highlighted the most pertinent areas for RA people. 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)

[hopefulRAsufferer]

I also felt like the number should be lower (under 20 is what the lab reports state as normal).  Also, I have only found out about the “yeast” in my gut recently so I haven't been aware of any stomach problems until now.  I just have a very bizarre allergic phlemy (not to be gross) cough that causes a tight throat and itchy throat/ear canals when I eat certain foods (it seems to happen when I eat something sugary, which is rare, and it can be gone for weeks at a time.)

I enjoyed the article posted and will do more research!

Thanks again.

[steph-sclero]

Hi Hopeful!

I had been on the Mino/Clindy iv's for almost a year but recently became quite ill (extreme vomiting, dehydrated, low potassium) and couldn't seem to shake it.  I also had a freak reaction to Stematol (used for vomiting) combined with my low potassium, I developed lockjaw (very painful). During my hospital stay for all this it was suggested that I get off everything I don't really need to be on until I get better. We needed to uncomplicate things until my body healed from all this. I agreed because I too felt with everything I was on who knew what was the disease and what was a combo of drugs/disease. I am still slowly recovering as I still don't feel like myself yet. I know I can always resume the antibiotics later but that right now I need to heal and get strong again. So yes, in my experience it's certainly okay to stop the AP and do what you need to do for you and you can always resume them later. Just like it took a while for the antibiotics to work it will probably also take a while for the lack of them to affect your health again. Just my opinion/experience.

Take Care,

Steph

[Maz]

Steph, thought I hadn't seen you about on here for a while. So sorry to hear about your recent health problems and do hope you're you're now on a mending trend.

In spite of it all, though, you still sound as strong as ever, which is a real testament to your spirit and resolve to get well and fight this with all you've got. You've had a really rough go of it and just wanted to send a note to wish you healing blessings and will be keeping you in my thoughts.  Please keep us updated on your progress.

Peace, Maz

[Kim]

Oh Steph, you poor baby…….that just sounds awful!  Boy, can I relate to the lockjaw.  I had both jaw joints dislocated from a car accident and still have TMJ problems 10 years later.  But hey, I  learned to make great soup so let me know if you want any recipes. 🙂

Take care…….kim

[Author]

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