ANA NEGATIVE

[Gatto88]

Good evening
I wanted to do a technical question …. I read a lot of studies on Mycoplasma and autoimmune diseases, but above all that this becomes ANA POSITIVE! So if a person has symptoms of scleroderma but with ANA NEGATIVE it is useless to try with MINOCIN? Must another pervasive type of infection be effective? You can ask this question to your doctors who have not been able to answer THANK YOU in Italy

[Lynne G.SD]

Hi Gatto;
ANA does not mean much is scleroderma as it is often wrong.There have been a lot of changes on that topic in the last year.
You should read the latest info at http://www.sclerodermainfo.org

[Gatto88]

But what I ask is that if ANA is associated with mycoplasmas, ANA NEGATIVE are associated with other bacteria?

[richie]

ANA is not a definitive test for scleroderma —the nail fold capillary test and anti centromere tests are better indicators for scleroderma –mycoplasma is just one POSSIBLE cause of scleroderma –if you read carefully there are many causes of scleroderma —my ANA never went above 1:60 which is barely elevated yet I had a bad case of scleroderma –Do not let the lack of elevated ANA be associated with you starting minocin !!!!!Suggest you also look into the other causes of scleroderma —and dont get too sold on mycoplasma being the only cause !!!!!!!!!!!!!!!

[Gatto88]

Thanks to the advice I had last bronchial infection by PSEUDOMONAS AERUGINOSA + STAPHYLOCOCCUS AUREUS treated with TOBRAMICINA and after 2 months I started with raynaud, reflux, dilated veins and intestinal pain, then I did a sperm culture that highlighted KLEBSIELLA .P
That is why I say that in my case the mycoplasmas may not be responsible and therefore concentrate on those identified in precenance. You REALLY know how you are with this cure and especially what are your responsible bacteria? MINOCIN helps you?

[Maz]

Gatto88 wrote:

But what I ask is that if ANA is associated with mycoplasmas, ANA NEGATIVE are associated with other bacteria?

Viruses are known to insert themselves into the DNA of the host and alter normal DNA functioning (e.g. cancer). Similarly, it is being discovered that bacteria may also interrupt normal cellular functioning in the creation of autoantibodies, possibly via molecular mimicry. Here are a couple of examples of infections that have been correlated to elevated ANA (certain strains of mycoplasma and ANA anti-centromere).

Mycoplasma

Lyme disease

Richie, Lynne and other old-timers here can attest that many people arrive here who are having trouble getting early diagnosis, because their labs (seronegative) are not reflecting their tangible symptoms of scleroderma. Doctors are naturally reticent to provide such a diagnosis until the diagnostic criteria are met and this may be because they don’t want to commit patients to a lifetime of immune-suppression until absolutely necessary. AP isn’t in this category, however.

I’d suggest reading the Henry Scammell books, Gatto, as you will find both the rationale for using AP in these, as well as many scleroderma remission stories. It was Dr. Brown’s belief, based in 5 decades of clinical experience as a practicing physician-researcher, that the best responses seen were when rheumatic illnesses were treated early in the disease course, before any irreversible tissue damage had occurred. Relatively speaking, AP is a very benign treatment and many consider that the risk/benefit of taking the wait-and-watch approach is not worth it and would rather get a head start on treatment.

Richie has a great remission story here.

Whether anyone adheres to infectious causes or not for rheumatic diseases, minocycline has numerous valuable disease-modifying anti-rheumatic drug (DMARD) benefits.

Re: Staph aureus

Re: Pseudomonas aeruginosa, have you seen this study on the site? Cipro is a quinolone antibiotic used in the treatment of this infection:

Ciprofloxacin has antifibrotic effects in scleroderma fibroblasts via downregulation of Dnmt1 and upregulation of Fli1. Int J Mol Med.  2012 Dec; 30(6): 1473–1480. Published online 2012 Oct 5. doi:  10.3892/ijmm.2012.1150

[Lynne G.SD]

Gatto,I just sent you a private message with info on Dr.L
Look at the bottom right of the page where it says Hello Gatto

[richie]

HI Gatto –I had a bad case of scleroderma –today all better –I still take minocin after 18 years because I believe it is just remission not cure — and can come back –do you take something for Raynauds -I take adalat XL –this worked ver y well for me –Talk to your doctor about helping Raynauds –also if you have reflux again talk to doctor about meds to help —–ask any questions you want –I might not be able to help with the science `but can relate from my own personal experiences –you have the best of both worlds here !!!!!!!!!!!!!!!!

[Lynne G.SD]

Good morning;
I just sent you a message from Pierluigi.I think he does not know how to use our site.

[Gatto88]

Thank you so much I could talk to the Doctor

[notabene]

Dear Richie and all: it was so good to read your remission story Richie, which will help me answer some current questions. I also have systemic scleroderma. When I was diagnosed in 2011, my doctor gave me all of the organ tests – heart, esophagus et al were fine, only the beginning of some tight skin (sorry, not precise, since it was in French) on my right lung. [My lungs, kidney, and lymph nodes all checked out fine in an exam last Friday.]

I started AP 5.5 years ago (minocycline, monthly clindamycin, plus calcium channel blocker when needed) and began to shed symptoms after about six months. Perhaps because I started AP very soon after diagnosis (rather than wait-and-see that my doctor preferred), my only hand contractions are a slight bend to my right ring finger. I still have some swelling in my hands and feet, acid reflux, and occasional cold fingers. Skin is loose, frozen face is gone, although my mouth is smaller. My remission timeline is very similar to yours, which is encouraging).

My question is whether the SCL-70 and antibody levels do eventually decline, or do they remain high. The latter would suggest that the nasty bacteria remain in the system (hiding deep in cells), but that the minocycline reduces the symptoms.

I ask, because I just had lab tests and the lab technician was shocked at my high levels. I told her they have been high ever since I was diagnosed, but that I have been on AP treatment since diagnosis. Now this is from a clinic in a mountain village of 848 people, so they have never seen the likes of scleroderma. I look forward to returning to the US in two years, where more scleroderma experts exist.

Thanks to all of you. I used to frequent RBF and remember your names. Maz, I thought of you when we spent four months in Sydney recently. Lynne also… The 29-hour trip back to Geneva was not anymore exhausting than might have been years ago (before scleroderma).

[Maz]

Hi Notabene,

Just fantastic to hear of your wonderful progress on AP. Yes, for scleroderma, it is a therapy for life, but this is not so bad, considering the alternatives. How lovely you got to spend time in beautiful Sydney…it’s Lynnie who lives there and I’m in the US. I’d like to visit Australia one day and hear so much about it from some dear Australian friends of ours.

Do you feel near to feeling confident to jot RBF your remission story yet? When you are, it’s so easy to go to the Stories page (above) and just fill out the automated Story submission page and one of the volunteers will be sure to get it loaded into the site. Stories, like Richie’s and yours, are a brilliant way to give back and pay it forward to others with SD who are newcomers and wondering if AP could help them, too, like Gatto. It also helps to give an idea of a timeline as it can be hard to grasp that AP is a slow therapy with no overnight miracles.

Thanks, Notabene, for sharing your return to better health! I just love hearing this kind of news and I never tire of it….i think it’s remission stories that keep me going as a volunteer after a decade! Just awesome!!!

[lynnie_sydney]

Hi Notabene
Good to see you again and so pleased to hear you are doing so well and, obviously a really good decision you made to start on the therapy early. With even “possible” SD, it is really good to start as soon as possible on the therapy, a ‘wait and see’ attitude doesn’t always bode well for something that can get away from you like a freight train.

At this point in my life, I’ve stopped worrying too much about my blood markers. My RF goes up and down, but my anti-CCP is always sky high. Yet, many years after I first became symptomatic (dx was Palindromic RA), I stay well for most of the time. Since beginning AP in 2003, I have always managed to stay ahead of things progressing chronic illness wise and without any heavy-hitting immune-supressing drugs. So, I stay vigilant and am prepared to be that for the rest of my life 🙂

I hope you enjoyed your stay in Sydney! Wishing you the very best – and looking forward to reading your story when you have time

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)

[Author]

Posts