RECENT DX OF SCLERODERMA

[Cheryl F]

Jess' lungs most definitely improved on AP.  She was experiencing shortness of breath significantly.  Walking slowly up the stairs in our home with leave her short of breath.  Her DLCO (lundg diffusion capacity) was 61%.  We had her tested several months later, not only had all of the symptoms resolved, her DLCO had risen to 78%.  She has not had another PFT since 10/2006.  BUT, she is competing on her college's NCAA swim team, training 25+ hours per week and never getting short of breath!  Well, actually she is quite short of breath at times during practice, but so are all of the other swimmers! 

[kramstine]

Hi cheryl, I

[Cheryl F]

She didn't get worse before she got better, she is the AP poster child, she is a poster child in many ways.  But remember she was only 16 at the time, children may heal faster than adults if they are given what they need to correct the problem. 

In her recent orthopedic surgery, the surgeon called her his poster child, said he had never seen a bone heal that fast.  I know that is probably not completely true, but it is very nice to hear.  She was released to return to full swim practice one week after the surgery.

You cannot base any expectations of timeframes on anyone else's improvement, BUT, you can base your expection that you WILL improve on everyone's collective experiences. 

Cheryl

[Maz]

[user=2]Cheryl F[/user] wrote:

You cannot base any expectations of timeframes on anyone else's improvement, BUT, you can base you expection that you WILL improve on everyone's collective experiences. 

Cheryl, what a perfect way of expressing this whole process! :dude:

Peace, Maz

[kramstine]

Yes cheryl, Those are really wonderful words. I

[JBJBJB]

Krams,

Have you tried other antibiotics, like Doxycycline, besides minocycline? Since your relative could give you Clindy IV, perhaps you should talk to Dr. S. in Iowa and use more aggressive Clindy IV (like once a week or once a month) to supplement the antibiotics you need for your treatment?  I sure hope you will be able to pull through.

I am always wondering if Chlamydia pneumoniae could be a culprit for developing Mixed Connective Tissue Disorder (MCTD) and later Scleroderma (SD). I noticed many MCTD/SD folks, who have pulmonary fibrosis, have some type of respiratory problem like chronicle bronchitis prior their diagnosis on MCTD SD.

That being said, I am wondering if it makes sense to have Doxycycline treat C. pneumoniae, meanwhile also treating RA disease. Or do any antibiotics work better for treating C. Pneumoniae as well as killing mycoplasma?

***http://www.cdc.gov/ncidod/EID/vol4no4/campbell.htm (Whalehabor posted this interesting link).

JB

 

 

 

 

[Cheryl F]

If Jess had been in that situation, and I knew then what I know now, I would learn about the most aggressive treatment protocols and work with a doctor who is willing to be really agressive with the antibiotic combinations. 

Also, have you considered the Viagra or Revatio for the pulmonary issues? If your lung issues are bad enough to even think about a lung transplant, let alone be on the list, then, IN MY OPINION, only the most agressive AP treatment should be considered.  Remember, a key word in the study that showed Minocin to be effective in scleroderma, the title of the study was, Minocycline in EARLY Systemic Sclerosis.  When the disease has advanced this far, my opinion is that you may need to strongly consider the most agressive combination antibiotic therapy.

Cheryl

[Parisa]

Kramstine,

My husband has lung involvement but with dermatomyositis.  One thing that I believe has helped is N acetyl cysteine.  It helps bring the mucous up and out of the lungs and it also protects the liver.  Also, recently he started taking an herbal tincture called enula that is based on the herb Elecampane which is supposed to be good for the lungs.  I've noticed that he doesn't have half as much mucous to bring up anymore so I do think it's working.

What about IVIG (intravenous gamma globulin)?  Would you be able to qualify for that?

Also, enzymes I think can be helpful as they can help eat away the fibrin.  Just beware that they can intensify the antibiotics (which is good, and bad -more herx).

One other thing that seemed to help my husband's lungs was a course of Diflucan (turns out he had quite a bit of candida in his lungs – thanks prednisone!).

[ickyvicky]

Hi,

May I ask what kind of enzymes are we talking about??

and how du they eat fibrin???

interesting 2 noe…:headbang:

 

[Parisa]

Lumbrokinase, serrapeptase, bromelain.  Cheryl's daughter used enzymes and I believe that it helped the lungs, also.

Sorry, don't have time right now to pull up the research.

[Maz]

[user=451]ickyvicky[/user] wrote:

May I ask what kind of enzymes are we talking about??

and how du they eat fibrin???

Hi ickyvicky,

I like the explanation given on the American Nutrition website…nice and simple. Of course, they're selling an expensive product, but it's still quite informative:

http://www.americannutrition.com/store/Neprinol300.html

Wikipedia also gives a pretty good explanation of the actions of serrapeptase, a proteolytic enzyme:

http://en.wikipedia.org/wiki/Serrapeptase

And, nattokinase…

http://en.wikipedia.org/wiki/Nattokinase

Your user name brought a smile….why “icky” vicky?

Peace, Maz

[ickyvicky]

Hey mAz, Thx 4 the prompt reply, I luv this site. i read almost every night, my 15 year-old asks me “Mom, what are you reading? and he sometimes reads with me.”

As for the “IckyVicky” some of my friends call me Vicky and some Tina. my best friends son gave me that name when he was 10. he is now 16. He never told me y but I always try not 2 ever take anything to heart.:roll-laugh:

Just needed 2 ask 1 more question if i may about the enzymes “can u get them with prescription??” they seem 2 b pretty costly.

Sincerely,

Tina/Vicky

 

[lynnie_sydney]

I cant add much more to this thread…except to say a huge thank you to all those SD people who chimed in to give a brief overview of their progress/success. It is really great to sometimes see a current thread that is mostly filled with success….it must be especially comforting to a couple of people on this Board that I know are trying to cope with quite a bit of fear and doubt right now. It is sometimes easy to get caught up in the problems and the backslides which are, of course, why most people post and, because of this to overlook the really good news. Thank you. Bless you. Be well. 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]

[user=451]ickyvicky[/user] wrote:

Just needed 2 ask 1 more question if i may about the enzymes “can u get them with prescription??” they seem 2 b pretty costly.

So glad you explained your user name, as you don't look “icky” to me, at all, but full of life and fun! Did bring a smile as to how you got dubbed by your friend's son, though! :roll-laugh:

Yes, Neprinol is outrageously expensive. I just buy Dr's Best serrapeptase and nattokinase from vitacost.com. Thinking I should probably also add COQ10, too.

Peace, Maz

[SusanSD]

Hi Jo Ann,
    Welcome. I also was diagnosed with diffuse scleroderma and had skin tightness and thickening everywhere, with no organ involvement. I have been on AP for 21 months and I keep getting and feeling better every year.
     I tried a calcium channel blocker but it didn't do anything for me so I stopped. On Bandolier's website, a review of the research for treatment of Raynaud's concluded that the evidence was inconclusive (e.g., calcium channel blockers may or may not help).
     I  never had steroidal cream. I used prednisone short-term to decrease the swelling and inflammation (10 mg). I only take Minocin and Flexeril (a muscle relaxant for another problem) daily. I take a bunch of supplements including digestive enzymes, Vit. C, B complex, Co-Q 10, and Vit. E.
     My skin is softer everywhere except hands and chest (which are still improved from a year ago). My major complaints are Raynaud's and sclerodactyly but I am pretty functional with my hands (minor flexion contractures).
      I didn't know if AP would work for me so I tiptoed into AP, and saw improvement between 3 and 6 months. If I had to do it all over again, I would have started with the IV clindamycin immediately.
     Good luck in your healing and road back,
      Susan

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