Remission without conventional drugs

[lemons]

Hello, Im wondering if there is anyone on here that has reached remission and been able to ditch all conventional drugs apart from antibiotics ? Ive read many posts on here with members saying they have made great progress, some in remission, but when I read their signature posts most are still using conventional drugs even biologics. I realise that AP can be used alongside other drugs initially while the antibiotics take effect, but for me the reason I commenced AP was in the hope that I could avoid the more toxic drugs in the future. If one still needs to rely on conventional drugs years into AP how do you know its working and what is the point ? Im feeling a bit disheartened as Ive contacted a few people on here, most haven’t replied and the ones that have are either still on steroids, plaquenil etc or have dropped out entirely. Sorry to be so negative but I drifted onto some other RA sites yesterday and I was blasted out of the sky when I mentioned AP. People actually get abusive about it, why ??? LEMONS X

[Suzanne]

My advice is to keep reading both types of boards – AP and conventional. You won’t see many non-medicated remissions in either place, so put that to the side and compare other things.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[lemons]

Thanks Suzanne but I think you misunderstood. My question is, can remission be achieved with antibiotics alone ?

[Lynne G.SD]

Hi Lemons;
I only know one person who totally got off meds and that is my sister.Her doctor is hesitant to say it but it looks like she is cured after using a lighter form of Marshall Protocol called Chronic Illness Recovery.She had MCTD,Lupus and Lyme.I have ben on AP for 15 years this November and am still having problems if I drop antibiotics so my doctor has switched me to CIR.I will know what happens in a few years.Because my SD comes back very fast when I drop AP she has me doing the protocol in reverse.I don’t stop the Mino and do not do a washout.Instead I am slowly increasing the Benicar.Started at 5 mg and am now on 120 and doing great so far.I much prefer this protocol as the antibiotic dosage is much lower which is a good thing as I have been having major gut problems and osteoporosis.My D level is only slightly lower than normal and thankfully the D1,25 is slowly going down.

[lemons]

Hi lynn, that’s encouraging to know about you and your sister. Im happy to take antibiotics for the rest of my life if needs be, I just want to try and avoid the more toxic drugs. I think Suzanne thought I was expecting remission without taking any form of medication, but I was just enquiring to see if anyone had sustained remission on antibiotics alone. You have been on AP for a long time, in my mind thats sort of remission ! Have you had any problems being prescribed the meds over the years ? Lemons x

[Suzanne]

@lemons wrote:

Thanks Suzanne but I think you misunderstood. My question is, can remission be achieved with antibiotics alone ?

I think it can, but that doesn’t mean it will for everyone. I think everyone’s cause is different, or a different mix of things. For my daughter, conventional meds have made her worse each time we try them. Remission does not mean cure, and there is no cure these diseases at this time.

I guess the point I was trying to make is that over the long haul, if you follow enough patients here and on other boards, you will find people here using less meds with a better quality of life. That has been my experience, at least. Adults I have followed on other boards are now filing for disability and parents are posting about how much school their child misses. Moms post of being told their child is in remission, but as soon as they reduce a dose of anything, they are back where they started. Also, they are told it is normal to still have pain when you are in remission – huh??? We will take ‘no remission’ over that life any day.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Valsmum]

Hi Lemons,
I know exactly what you mean. I tried traditional RA meds , I felt like I was going to have a heart attack during one RA med infusion and they stopped the infusion immediately and rushed me in a wheelchair to the ER. My heart rate had tripled, it was so scary.So I was not keen on trying more biologics, it scared me after that experience. In total I have tried three of them, with pain still? I tried methotrexate and still had huge grapefruit sized knees, and the stuff made me feel blue. I would take it and then I noticed the next couple of days afterward I felt blue, my dr told me that was normal ??

Then I had a friend with AS get off her meds with juicing and eating mostly raw foods. I tried juicing only for a week and my pain improved and my swollen knees looked somewhat normal again. When I introduced dairy, nightshades, grains, I worsened. So I try hard to eat a strict diet and I have made my labs go into normal range. My sed rate was at 55 and now it is normal!! I never thought my sed rate would be in normal range just by a change in diet.

The thing about reading other people’s experience’s with traditional RA meds, is a lot of the time they are still on steroids, still in pain and now have a nasty side effects on top of their poor health condition……what a mess.

Hope you find something that works and you get feeling better as soon as possible 😉

[lynnie_sydney]

Hi lemons
I think you’ll find that alot of the people who use the forum and who post notes and updates in the Personal History section are people who are not that far along on their AP road. That can be why many are still taking mixes of conventional meds and abx. Over the years, those who reach remission (or close to it) tend to drift away and go out and get on and live their lives, so there are not that many who stay around here because they no longer need to. Kind of makes sense, doesn’t it?

You may be better off going to the main site and reading the testimonials section. Most of those are written by people who’ve reached remission or pretty close to it. Some of those people have provided contact details so you can email them if you’d like to ask more questions.

In my own case, I am pretty well most of the time and am now at the 10 year mark after commencing AP. I have never taken conventional drugs, only ever antibiotics.

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)

[kristie]

Hi Lemons,
I have only taken mino and ibuprofen for my RA. I take 100mg BID, everyday, since Dec 2011. Within about 6 months my labs were in remission. I still get occasional aches and pains but not even comparable to before mino. I KNOW it’s working for me and hopefully it always will. kristie 🙂

[lemons]

Thankyou, lots of positive things to read, just what I needed ! Strange but this Sunday morning I woke up at 5.30 am & instead of lying there thinking depressing thoughts (like I have been every morning since June). I threw back the the duvet, ignored hand, shoulder, lower back pain, but oddly no foot pain today, got dressed and took dog for a walk over the fields.I watched the sun come up over the woods & would’ve walked further but my dog is a Saluki & kept pulling as there are lots of deer here & my ears were cold ! That’s the first time Ive walked over the fields since my diagnosis, didn’t think I would be able to do it again, must be the placebo effect as ive only had 3 minocin tablets this week !!!! Thanks again for positiveness, if that’s a word 😕 Lemons x

[Anonymous]

Lemons,
I don’t think that’s just placebo effect, I believe that’s working for you. I also started mino just 2 weeks. within a few days, I was able to do what I couldn’t do over the years. I’m still amazed by this miracle. Let’s see what’s unfolding ahead of us. 🙂
SD.

[Krys]

@lemons wrote:

That’s the first time Ive walked over the fields since my diagnosis, didn’t think I would be able to do it again, must be the placebo effect as ive only had 3 minocin tablets this week !!!! Thanks again for positiveness, if that’s a word 😕 Lemons x

I sounds like typical abx honeymoon has just started! 😉 It will be getting better.
I think it’s prudent to read up on DETOX and have all kinds of methods handy when the honeymoon is over and the herx begins.
Krys

[lemons]

Hi Krys, I think it was a fleeting placebo effect and I was fed up with being miserable so forced myself up and out. I had a months worth of doxycycline back in May, just incase this was lyme and believe me I know what a Herx feels like, I looked like I had been pumped with water as I was so swollen and in agony into the third week. I must say though,on the three few days I have taken the minocin my head felt clearer and Im more alert. What is brain fog ? Is it the sensation of being slightly distanced from reality and the feeling of, sort of being trapped in your own head ? That’s the best I can describe it 😕

[A Friend]

@lemons wrote:

Thankyou, lots of positive things to read, just what I needed ! Strange but this Sunday morning I woke up at 5.30 am & instead of lying there thinking depressing thoughts (like I have been every morning since June). I threw back the the duvet, ignored hand, shoulder, lower back pain, but oddly no foot pain today, got dressed and took dog for a walk over the fields.I watched the sun come up over the woods & would’ve walked further but my dog is a Saluki & kept pulling as there are lots of deer here & my ears were cold ! That’s the first time Ive walked over the fields since my diagnosis, didn’t think I would be able to do it again, must be the placebo effect as ive only had 3 minocin tablets this week !!!! Thanks again for positiveness, if that’s a word 😕 Lemons x

Hi Lemons… glad you found the board and are sharing with us,

There are so many stories that are told by those on this board. The various illnesses, treatments, progress, and things we patients choose to use as part of our “recovery process” are varied and many. We are accustomed (before such diagnoses as patients here have) of being given an RX med with directions for dosage, and expecting a magic bullet. True recovery (unfortunately) involves much more. We must listen to our bodies, then read/learn/experiment with food choices, needed vitamins, minerals, etc. Our illnesses and help for them can be almost as varied as our genes… and there are a lot of them, and the way we are put together.

Sounds like you have just experienced one of those “hopeful” moments. May they increase!

For myself, that time came after the first 4 months of beginning AP treatment (had gone to Iowa, had IVs 5 days twice daily; gone home to Minocin twice daily on M-W-F. Because of the previous IVs and beginning Minocin, there was apparently a large amount of die-off in my lungs (probably from mycoplasma found on lab testing there), and I developed atypical pneumonia about that 3rd or 4th week after IVs; was told to stop Minocin while my local doctor had me take a more effective med for pneumonia. Was told by my Iowa doctor to follow the local physician; and when the pneumonia was well, to “get right back on Minocin.”

After about the 4th month, I felt like you wrote in the above — I could suddenly raise my left hand higher than my shoulder, and at a deep level, I felt deeply I was on my “Road Back.” (It has not been without its ups and downs; but what I’ve dealt with on an ongoing basis is because of how my body was compromised during several years of illness — since then, I’ve been in an extreme learning mode to learn what my body needs and how I can help it while it remains in recovery process. This process will probably last for the rest of my life — but what it has needed so far come from substances known for the body to need. Fortunately,for the last couple of years, I have not needed Minocin; and have found/learned that in my case, after doing well for many years, that nondenatured whey protein once daily is able to control through metabolic detoxification, what the very low dose of minocycline had done for years before that.

Good luck to you in your own decisions. There are many posts that can be searched in the search window by General Discussion in your spare time — and the search highlights can/may help you find a “needle in the haystack.”

AF

[m.]

I’ve never taken conventional RA drugs, only Doxy. I’m not 100% pain free, but I consider myself in remission. I work full time, and I’m physically active. Most days I’m not even thinking about my arthritis. I was lucky to have gotten on abx shortly after my first flare.

[Author]

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