Questions about the process of AP

[hopefulmama]

Hi everyone,

As I wait to get my diagnosis and begin AP, I have been reading your threads and posts closely to get a better understanding of the process of healing and how the protocol works.

I have noticed that many of you who describe enormous improvements or remission are still changing up your protocols, adding more or different antibiotics, etc.

Is this because you are trying to heal other things beyond your connective tissue disease symptoms – like Lyme?  Or is it due to flare ups in your original symptoms? 
 
I guess mainly I am wondering if there will ever come a time when I may be able to heal enough that I could have a maintenance routine and still live pretty normally.  My husband and I would love to be able to travel with our kids, do some of the things we always dreamed of – and I'm not sure how that would be possible if I needed to be on IVs all the time.

Anyway, just wondering.  I am so truly, deeply glad that you are getting better. 

A

[Trudi]

[user=2523]hopefulmama[/user] wrote:

I guess mainly I am wondering if there will ever come a time when I may be able to heal enough that I could have a maintenance routine and still live pretty normally. 

Based on the many who don't post routinely, but check in every now and then, I would say resoundingly, YES!! 

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Joanne NJ]

I think everyone has many medical reasons for doing AP with different variations and outcomes. I am doing AP for RA, six months now and doing so well. I could not find an RA doc to do this, so my primary doc said yes and is overseeing my treatment. I have a brother who did AP therapy for 1 year, also for RA and has been in remission for 2 years, he feels great, a labs are normal, and has not taken the anitibiotics for 2 years, so I strongly feel that remission is possible! My doc decided that we would start my doses exactley what my brother took. I see him every 3 months with extensive labs, we are both thrilled with my improvements. I go for blood work next week and see him the following week and we will discuss my dosing from there. I have never done IV's, just oral antibiotics.

:DAP has given me my life back, the things you wonder if you will ever be able to do again come back. I am 42, and if it was not for this, I believe I would be in a wheel chair. I can walk long distances, travel, grocery shop, swim with my kids, cook dinner, walk my very large dog, climb the steps, open a water bottle! I can go on and on, so I hope my story helps!

Joanne

[Dan_M]

[user=2523]hopefulmama[/user] wrote:

I have noticed that many of you who describe enormous improvements or remission are still changing up your protocols, adding more or different antibiotics, etc.

Is this because you are trying to heal other things beyond your connective tissue disease symptoms – like Lyme? 

In our case, “yes”. The AP of 100 mg mino BID every day immediately improved my son's scleroderma conditions. His patches of hard skin at this point are, for all practical purposes, gone. However, he still has serious RA issues with his hands, and to a lesser extent in his ankles. His protocol helped his ankles a lot, but not completely. It has not had any effect on his hands. So in our case, we have hit a plateau, and need to ramp up to the next level. In our case, this meant doing a week of Clindy IVs. We also have a dx of Lyme, so to cover all bases we have also moved to a Lyme protocol, while keeping the mino in the mix. 

[lynnie_sydney]

[user=2273]Joanne NJ[/user] wrote:

:DAP has given me my life back, the things you wonder if you will ever be able to do again come back. I am 42, and if it was not for this, I believe I would be in a wheel chair. I can walk long distances, travel, grocery shop, swim with my kids, cook dinner, walk my very large dog, climb the steps, open a water bottle! I can go on and on, so I hope my story helps!

Joanne

Joanne – what a wonderful post which will give so many here such hope! We'd love you to consider writing a testimonial – perhaps at your 12 month anniversary? If and when you are ready just send it to lyn@roadback.org. Wishing you continuing great health and wellbeing. Take care. 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)

[richie]

Hi -To Dan —hand contractures take much much longer than a few months to resolve –glad to see your son has had such good progress in so short a period of time —It took about 3 years or so for my hands to become normal again —I just stuck with the 200 mg daily protocol and excercised my hands and fingers as much as possible –going to occupational therapy helped a lot as they gave me many valuable excercises and drills to do —Straightening out of the fingers was a long  haul for me with progress being measured in tiny increments —point is –have your son keep at it –use the hands as much as possible without pain and I really feel good things will come of it —
richie

[mschmidt]

AP has been life-changing for me, and I can't imagine where I would be right now had I not started it.  Yes, I do iv clindy every month, and have since March of last year.  My AP doctor wants me to do it until June of next year.  I would rather have him “overtreat” me than undertreat me because I refuse to give this beast of a disease a chance to rear its' ugly head again.  I also have Lyme in the mix, and treating that has significantly improved my SD.  All I can tell you is that a year ago I hurt so bad that walking across the room was a chore.  This week, I've run 3-4 miles/day on the treadmill, as well as lifted weights afterward.  I feel as good as I did before I got sick, and I'm due for another round of iv's next week.  The bottom line is, I've improved so rapidly, all things considered, that I will do whatever it takes to restore my health.  Doing iv's for 2 years, and taking some pills daily is a small price to pay to have my life back.  I know there will come a time when I will be in complete remission, and a maintenance dose is all I'll need.  Until then, I'm just going to keep doing what I'm doing because I feel GREAT:D.

Many people here have done amazingly well doing just oral abx so, consider all your options, and choose a protocol that you feel is best for you. 

Good luck, and let us know how you're doing.

Maria

[Dan_M]

[user=16]richie[/user] wrote:

Hi -To Dan —hand contractures take much much longer than a few months to resolve –glad to see your son has had such good progress in so short a period of time —It took about 3 years or so for my hands to become normal again —I just stuck with the 200 mg daily protocol and excercised my hands and fingers as much as possible –going to occupational therapy helped a lot as they gave me many valuable excercises and drills to do —Straightening out of the fingers was a long  haul for me with progress being measured in tiny increments —point is –have your son keep at it –use the hands as much as possible without pain and I really feel good things will come of it —
richie

Thanks Richie. That's good to know that about the hand conractures. We've been so concerned about that issue, that I forgot that in the very beginning Ryan actually did see improvement in his hand strength. Never in the contractures though. When he first started AP he had lost much of the strength in his hands. After 3 or 4 weeks he was able to open a juice bottle, and a month after that he could open a water bottle. That probably made it even more disappointing that the contractures did not improve, and in fact got worse.

We've actually just gotten some good news but I don't want to hijack this thread so I will post that elsewhere later on today.

Thanks again for the feedback, Richie. The more we learn, the better we can understand what to expect and what we need to continue to do. 

Dan

[Author]

Posts