Is it too late?

[Anonymous]

Hello, my name is Dan.  I'm 27 years old and have some sort of autoimmune disease (seronegative spondyloarthopathy/AS/JRA/possible crohn's).  I first felt the effects at around age 11 when I had suasage like toes and inflamated knees (seemed normal at the time as I was playing competitive soccer everyday). 

Currently the disease is relatively under control with humira and dicloflenac.  I've tried all the other drugs but these have been the most effective.  However the disease is still progressive and destructive despite my being able to function day to day.  I've already had an ankle fusion, a synovectomy on both knees and ankylosis of my left cervical spine.  I'm not satisified with this progression, eventually leading joint replacements and complete ankylosis of my spine. 

So is it too late to start with AP?  Can it slow down or even stop the disease from moving forward?  I would guess I have to accept the damage already done. 

Just of note:
– the disease symptons first started showing up around the same time/after some nasty ear/nose/sinus infections.
– after each surgery I was given antibiotics via IV, and coincidentally my symptons subsided a great deal.

Thanks for listening to me, I've never written this much about my illness.

[maz.aust]

Hi Dan,

Welcome to the site — everyone needs someone to listen and there are plenty of people here who will do just that —

Plus you can get some great information here.

Just wanted you to know I hear you.

Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[lynnie_sydney]

Welcome Dan! I have PM'd you as to why I moved your post to this section. Just look top right and it should say 1 New Message to the left of where it says Logout. 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)

[Maz]

Hi Dan,

Have you had a chance to read The New Arthritis Breakthrough? Dr Brown often saw patients who were seeking a last resort treatment when all else failed. This is not to promise that longstanding disease would be turned around quickly, just that patients who have been sick a long time have a good chance of regressing their disease.

I think you'll also find the info under the Education tab on the main roadback website to be quite enlightening. For longstanding disease, it is recommended that patients seek out an experienced AP physician and one that will also offer IV clindamycin therapy in addition to oral AP in order to get a bit of a jumpstart. The fact that you had some relief while on IVs during past hospital stays is a pretty good indicator that you responded to antibiotic therapy. Unfortunately, AP can't reverse damage to joints that is already done, but it does slow progression and a good many have reached credible remission.

You might find Dragon Slayer's personal progress thread to be of some encouragement in this regard:

http://www.rbfbb.org/view_topic.php?id=872&forum_id=3

Not sure where you're located, but Dr S in Ida Grove is one of the most experienced AP docs in the US, if travel is an option to you. He is also willing to speak with patient's physicians to give guidance on how best to treat.

AP is not an overnight sensation for most. It takes patience and some dedication to push through the rough spots, as well as to change up a few things in lifestyle to support the gut and overall health, but it is a very hopeful therapy!

So glad you found us all here and please feel free to post any questions you want…nothing is too trivial here and there are a lot of experienced APers to offer support while on your road back. Welcome!

Peace, Maz

[Bill]

Dan

 It is not too late. You have found this site for a reason. Avail yourself of all the information available. Maz is right, Dragonslayer has an amazing story of success. Check it out.

Be well

Bill

[Jo]

Hello Dan;

It's never too late.

My husband was at the point where they wanted to do replacement surgery, when we started down this path.  He refused the surgery.

We use extremely high levels of MSM to prevent inflammation and herxing. Plus the mino to destroy the bacteria. 

You can do it.

[pcw1718]

Jo,

Could you share where you get/brand of MSM?  How much does your husband take?  I need to try this! 🙂

[Anonymous]

Thank you so much for the responses.  I very much appreciate it.  I first heard about antibiotics to treat such diseases from Dr. Mirkin.  Here's a radio show he mentions it on:  http://www.drmirkin.com/mp3s/hour228.mp3

I just finished The Arthritis Breakthough and will check out Dragon Slayer's story.  Thank you so much.

[Jo]

[user=706]pcw1718[/user] wrote:

Jo,

Could you share where you get/brand of MSM?  How much does your husband take?  I need to try this! 🙂

 

http://www.puritanspride.com/

MSM  1500 mg

Start with one pill a day, and if you get 3 days with no detox symptoms then increase by one pill.

Typically, you need to get over 12,000 mg per day before the inflammation goes away, but after a few months you can reduce by a bit.  It's easier to keep the inflammation away, than to make it go away the first time.

My husband had to go up to 18,000 mg per day, (i'd have to look it up, might have been higher) before his inflammation went totally away.  But, he was very, very, very bad.   Crippled, can't help, you need surgery type bad when we started.

Now I think we're down to 9000 mg a day (again, have to look it up to be sure)  with no symptoms of anything, no inflammation and no herxing, except for the fatigue.

Side effect of no inflammation, is that the antibiotics work soooo much better.

Good Luck

[pcw1718]

Is it the Glucosimine Chondroitin MSM or straight up MSM?  The one that comes up on the link that you sent is 500 mg.  I assume you start with three a day and then work up as your suggested?

[Jo]

[user=706]pcw1718[/user] wrote:

Is it the Glucosimine Chondroitin MSM or straight up MSM?  The one that comes up on the link that you sent is 500 mg.  I assume you start with three a day and then work up as your suggested?

 

You might have to do a search for it.

We use straight MSM because of the high doses, You may not want such high doses of the glucosimine chondoitin, which has not been tested for safety at such high doses the way the MSM has.

We use the 1500 MG because otherwise it's just too many pills to have to take in one day.

Start with one 1500 mg per day, and work up to however many eliminates your inflammation. 

Good Luck

[pcw1718]

Thanks so much!

[Author]

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