Remission?

[kowens]

I met with my environmental doc on Sept 8th. He declared me in remission from Diffuse Scleroderma.  A week later I visited my Rheumy and he declared me in remission from undifferentiated connective tissue disease. (They are both seeing me for the same thing, but they have diagnosed me differently.)  Today I received my latest test results: negative for strep, lyme, boriella and thyroid dysfunction.  Praise God.  Now here is where I need to walk by faith….  My docs want to wean me off my meds. I will stay on the diet and supplements, but I will begin to wean off the antibiotic protocol. Then, if I'm doing well without the AP I will be weaned off of the LDN.  I'm thankful and nervous at the same time. I feel so much better, but I don't want to relapse. I'm also nervous because the  weather is getting cold again. Last winter I felt awful. I've only felt good since May… They say my body has healed, but I'm worried that perhaps it was related to the good weather?  I know that God lead me to my doc so I'm going to trust in his judgement. He's done so much to get me well thus far.  I need to continue to live in moderation — plenty of sleep, Yoga, prayer/meditation, good diet, moderate work schedule…keep warm.

p.s. My rheumy said that people who go into remission are rare, but of the ones who do 1/3 never have troubles again.

Blessings.

[lynnie_sydney]

kowens – that is fantastically great news! :dude: I can understand your nervousness however. Just wanted to let you know that some pretty experienced SD people are not able to access the Forum at the moment – Kim included – so will not be able to reply to you. (You may want to repost in a couple of weeks to get some additional perspectives). 

If it were me, I'd want to stay on a maintenance dose of mino – at least for a while – rather than risk a relapse. Only you can decide that however. BTW, I assume you've been on the abx protocol for about a year? 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)

[heatherbell]

Well isn't this fantastic news!  I would listen to what Lynnie has said for the interim period so you can get some feedback from fellow SD sufferers.  But in the meantime – rejoice:roll-laugh:

[hopefulmama]

kowens,

I just want to thank you so much for posting this.  every time my spirits start to flag, i come to this board and read about miracles.  you are now one of these miracles and your story has renewed my faith right when i am feeling so very exhausted and achy.  thank you so much. 

i will keep you in my prayers, and hope that whether you decide to stay on a maintenance dose of minocycline or whether you wean off, that your remission will be permanent 🙂

A

[richie]

Hi–The chance of relapse in scleroderma is relatively high –I have seen it over and over and its tougher to treat the second time around —your doctor even confirms this by stating that 1/3 of folks dont have problems –that means 2/3 do –thats way too high for me –I am in remission for scleroderma for over 4 years now but continue to take the full dose of 200 mg daily –to me that seems prudent –AS a minimum think about a maintenance dose –although I have my doubts if thats enough —
richie

[davew]

I wish I had continued a maintenance dosage of AB after my RA went into remission. Since the RA became active again, I am unable to come close to the level of relief that I had previously.

Probably no guarantee that it would not have returned, but at least I would have remained pro-active in my own treatment.

As the old saying goes, “If I knew then what I know now..”

 

Best wishes,

Dave

[Parisa]

Considering your remission is relatively short term, the side effects of mino minimal and the consequences of sclero relapse extremely serious, I would opt to continue the mino for at least a year.

[PhilC]

I suspect that relapses may be due (in part) to the fact that the tetracyclines are bacteriostatic rather than bacteriocidal. It may be possible to achieve remission by reducing the pathogen load to a low level without totally eliminating it. The problem with that, of course, is that the bacteria will begin reproducing again as soon as the AP is discontinued. There is also the well-known phenomenon of bacteria (e.g., Borrelia burgdorferi, Chlamydophila pneumoniae) that are able to convert themselves into dormant forms that are antibiotic resistant.

[user=664]davew[/user] wrote:

I wish I had continued a maintenance dosage of AB after my RA went into remission. Since the RA became active again, I am unable to come close to the level of relief that I had previously.

Hi Dave,

You may want to consider trying a more aggressive approach. I like the Wheldon protocol. It was designed by a medical microbiologist, and seems well thought out.

See: Wheldon Protocol

I believe that the combined antibiotic protocol (CAP) developed by Dr. Wheldon, and similar ones developed by others, are improved versions of the antibiotic protocol that Dr. Brown used.

Phil

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

[Tintap]

I am glad to learn that you are doing well.

I can tell you something from my own experience – sometimes its folly to go off ABX . By all means rotate Abx or reduce dosage – but fully stopping – think very carefully before doing so.

I have RA . The first time I went on AP was 6 years ago when I first had the disease – I was in remission in about 6 months . I kept having the Minocin though. The 3 years later i was pregnant with my second child and so ofcourse I went off minocin ( while still in remission).   The RA returned with a vengeance after my second child was born.  I started on Minocin again – but guess what it did not work that well. I switched to a combination of doxycycline and Azithromycin – and its been 2 years since I restarted AP – but not much improvement ………

Knowing what I know now – if i ever have the fortune of going into remission again – I wont go off my Antibiotics 🙂

Hope that helps

[nspiker]

Tintap,

Have you been tested for lyme?  You may want to pursue an Igenex lyme test since your progress is stalled on AP….just a thought.

nancy

[PhilC]

[user=2406]Tintap[/user] wrote:

The RA returned with a vengeance after my second child was born.  I started on Minocin again – but guess what it did not work that well. I switched to a combination of doxycycline and Azithromycin – and its been 2 years since I restarted AP – but not much improvement ………

Hi Tintap,

Are you still on these dosages?:
From June 2010 am on
doxycycline 100 mg MWF
azithromycin 250 mg every 10 days

If so, I am wondering why you are taking the azithromycin only once every ten days. Are you experiencing intolerable Herxheimer or die-off reactions after you take the azithromycin?

Phil

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

[Tintap]

Phil ,
    I just realised that I did not update my signature line to reflect the doses of meds I currently take….
Tintap

[APbeliever]

My RA is in remission for the past few months or so and I am taking my break off all antibiotics. I do have some little pain here and there but ESR is low like 4~5 everytime I had it checked (I am using supplements to control the pain and inflammation). I am using Low Dose Naltroxone like most others on this forum. Hopefully, that should help you out too, TinTap. Please get the filler checked on the LDN capsule by reading more on LDN forum about it. I try to take an ocassional break from LDN also but RA pain and fatigue comes back and I have to start it again. I get dizzy spells and vertigo from LDN which I found out today from Skip's Pharmacy is a known side effect of LDN. However, these side effects started recently and I have been on LDN for almost six months now.

[Author]

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