Home › Forums › General Discussion › Scleroderma waiting game
- This topic has 12 replies, 4 voices, and was last updated 5 months, 3 weeks ago by Maz.
February 25, 2021 at 4:53 am #466292
I have the scleroderma antibodies.
High positive ANA – titer = 0:1280 & positive centromere but told I do not meet the criteria for scleroderma therefore I do NOT have it.
So, my question to 2 different rheumatologists and 1 scleroderma specialist was, “how do I keep this from manifesting into scleroderma”
Answer: THERE IS NOTHING YOU CAN DO! Just wait and see if it manifests into scleroderma. But waiting has already taken a toll on my health!!
Does that sound right? Nothing? No therapy, meds, supplements… nothing?
When I questioned all 3 doctors plus my GP about AP therapy, they all looked at me like I had 3 heads a dismissed it!
Can anyone help?February 25, 2021 at 5:08 am #466297
Hi little Lou,
Do you know why your doctors tested your ANA at the outset if you had nothing suggestive of a rheumatic disease?
The reason why there is nothing that can be used in the form of a treatment to prevent symptoms occurring is that the only meds available to treat rheumatic diseases are immune system modulators and palliative ones. These are powerful meds with the potential for side-effects and are not used until/if needed. There is nothing “curative” they can offer.
Have you had a chance to read the Henry Scammell books yet? Your question is covered in the book and the rationale for starting AP early is discussed. Stress certainly is a big trigger for rheumatic diseases and many here will be able to relate!February 26, 2021 at 7:11 am #466299
Thank you so much for your reply. Long story short, I am a very active 50 year old. Still playing sports. About a year ago I started experiencing tingling, burning
and swelling sensation in my feet. While playing ice hockey I started experiencing dizzy spells & shortness of breath. After many blood tests and different doctors. I changed my GP and my new doctor tested my ANA. Its was a high positive followed by all the routine tests and various doctors.
Lungs and heart are fine. Even my nail fold capillaries test was normal. But sitting back waiting for this disease to start attacking me is already killing me!
I can’t sit back! There’s gotta be a way to stop it!February 26, 2021 at 11:02 am #466302
Hi Little Lou,
Thanks for sharing a bit of your journey to date with us. It’s not unusual for people to arrive with positive labs and few or no symptoms, or with symptoms but who are seronegative. Both scenarios are unnerving for newcomers as, unless symptoms are becoming swiftly debilitating, there are really no early medical interventions offered, but most want to get ahead of things.
You should be a able to find lots of past discussion threads where the same dilemma you are facing is discussed. Like you, most don’t want to wait until symptoms arise or worsen. Perhaps you will feel similarly once you’ve had a chance to read the Henry Scammell books (one explains the treatment rationale and the other is largely scleroderma patient AP remission stories).
You might find it interesting to also listen to the Better Health Guy interview just posted here:
Better Health Guy interviews authors of “Chronic.”
Many infections can cause elevations in auto-antibodies and its unknown if this is due to a post-infectious reactive state and these antibodies are protective, pathogenic (triggering autoimmunity), or unremarkable and will go away… or if chronic infections are causing molecular mimicry, etc. In some studies, for instance, up to 50-70% of severe Covid patients are developing a positive ANA titer, as well as other markers specific to various rheumatic diseases. Point being that although medical science recognizes that rheumatic diseases can originate from an environmental trigger, like toxic exposures and/or infections, there are still a lot of unknowns, and treatments remain focused on immune suppression …. but what if the immune system is doing exactly what it’s intended to do and going after a chronic foreign intruder?
Are you considering trying AP?February 26, 2021 at 11:30 am #466304
I’m trying to leave the AP door open and learn about it. I tried discussing it with my doctors but they cannot think outside the box!
I’m told I “only” have the antibodies due to my blood work.
I can’t be diagnosed by labs alone and healthy people can also have these positive antibodies.
Hopefully, I’ll only carry the antibodies and will never have this horrible disease.
Do you agree with that? I can carry the antibodies but not manifest into scleroderma?
Thanks again!!!February 26, 2021 at 1:02 pm #466306
Little Lou, I think you are wise to get as educated as you can be about AP, tracking back through your health history, for instance, to look for infectious clues.
One episode of neuropathy doesn’t make for a definitive diagnosis of a rheumatic disease…yet may be a piece of your puzzle? Sometimes, it’s only by looking back in retrospect, after diagnosis, that folk realize they had signs/symptoms for years that came and went. Rheumatic diseases can wax and wane for a long time or can suddenly erupt as swift onset….or, a person may have positive autoantibodies temporarily or for life, without experiencing autoimmunity. I don’t think much study has gone into the latter situation, however, and would think that this type of situation arises as an incidental finding. Others, like you, dig for answers once notable symptoms (like neuropathy) arise.
If you have any questions about AP or want to look for a doctor, you’ll find educative materials and the Doctor Search page on the RBF website, as well as others using the therapy in this forum.March 4, 2021 at 1:20 am #466316Vincentpre23Participant
I totally understand your frustration as many of us had to make the decision of treatment pre diagnosis. I unlike you do not have any specific antibodies but had a borderline low positive ANA 1:40 which went negative. However my symptoms came on pretty quickly and I was suffering and spent 10 months trying to pin down a diagnosis before I decided to give antibiotics a chance. It was the best decision I made. I went to several rheumatologists at New York University and then a scleroderma specialist at the Hospital for Special Surgery. I was told antibiotics do not work and offered planquenil but the scleroderma specialist said minocycline might work for reactive arthritis. I found another rheumatologist at the same hospital who was an AP doc and who knew Dr. Brown personally. He treated me until he retired last summer.
Your antibody is suggestive of CREST or limited scleroderma. You can take some comfort in knowing that most times it is a slower progressing version as some have it for 25 years before things get bad. I have a friend who has had that antibody since she was 12 and she’s 30 now and she only has Raynaud phenomenon as her symptom . She takes no medication but leads a healthy lifestyle and is a vegan.
If I were you I would learn as much as I can about AP so that you can make an informed decision. I would also see an integrative physician , like a functional medicine doctor that will test your gut and test for latent infections and imbalances. You may only need strong antimicrobial herbs and diet modifications to prevent full disease state or you may need to be on certain antibiotics for a few months. Many people on AP do see a reduction in antibodies during treatment.
I think you are way ahead of the game. Like Maz stated , scleroderma is treated as symptoms arise. This means that even if you were diagnosed they would wait for things to happen before they whip out the big guns (immunosuppressants). I think you have as much information as you are going to get from the doctors you have seen and should start consulting with doctors who view autoimmunnity differently. I now only use doctors within my insurance network for pulmonary function test ,mris, echocardiograms etc.. Keep a positive attitude and take full control of your health and you will be just fine.
4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHMMarch 4, 2021 at 11:24 am #466317
Lovely to see you, Vincenzo! Thanks for dropping by and sharing your journey this far. You are an inspiration!March 5, 2021 at 6:38 am #466324
Thank you so much for your story and your encouraging words. I’m am trying to find an innovative doctor that believe in AP TV therapy and takes insurance.
this has become a task!!!
God bless you and thank you!March 6, 2021 at 10:10 pm #466328Linda LParticipant
Before I was told that I had RA I had a really strong burning on the bottom of the feet when walking. Also I felt numbness in one foot. My ANA Titre is 1:160. Could you please, if possible, share with us your labs results?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousMarch 7, 2021 at 7:52 am #466329
My ANA titer = 1:1280
Centromere B greater than 8
You can message me with any questions…December 12, 2022 at 9:28 pm #467121
Hello Maz and all,
Quick update, I’m still not showing enough clinical symptoms to get a medical diagnosis (positive ANA + centromere b) anyway, instead of waiting around I’ve been able to “score” some doxycycline. I’m doing this on my own because no doctor would help me! I am taking a Monday Wednesday, Friday 100 MG regiment.
Does anyone agree, disagree or have any advice? Thank you all I hope everyone is happy and healthy 👍 soDecember 13, 2022 at 2:23 pm #467122
Nice to see you again! Unfortunately, as Vincenzo mentioned, it’s a journey finding any doc who accepts insurance to help with the therapy. There are newly emerging integrative rheumatologists, who seem to be meeting increasing demand for a more holistic approach rather than only offering symptomatic relief with immune suppression. Much of the time, although their consulting fees may not be covered and they are out-of-network, labs and meds are covered (I think Vincenzo mentioned this above). So keep the faith that you will find a doc to help.
The Minocycline in Early Diffuse Scerloderma trial (as outlined in SD research section on site here), used 100mg Minocycline once a day for the first month and then an additional 100mg was added to the treatment group thereafter and for the year-long duration of the study. It was a small trial but resulted in remarkable results. Of course, in all studies, to reduce variables, the treatment groups are treated the same and individualization of the study treatment is not used.
As far as I know, as just a fellow patient, doxycycline doses are more or less equivalent to Minocycline. The reasons why people are prescribed doxy instead of Minocycline is multi fold: they need to switch due to side-effects, like hyperpigmentation, medication reactions, unavailability in some countries, higher doses needed for some bugs and where equivalent doses of mino may not be tolerated, etc. Minocycline was unavailable in Dr. Brown’s formative years of helping rheumatic patients, but seemed to be preferred when it came into the market in the early 1970s. However, Minocycline is generally preferred by AP docs and patients today as it has superior lipid solubility, crossing cell walls more effectively. Minocycline, notably, also has excellent neuro-protective effects and has been studied in early MS, for example, and post-stroke. This is not to say low, pulsed doxy won’t be effective, but reversing SD symptoms takes a lot of patience and time and most folks want to see results as soon as possible.
Knowing which infection one is treating can be especially helpful in choosing which protocol (daily or pulsed and which antibiotic) to follow and Dr. Brown did this routinely with all his rheumatic patients. Some bugs, like mycoplasmas, are cell-wall-deficient and slow-growers, and don’t necessarily require daily dosing. Other bugs, like common tick-bourne ones, may require daily dosing in order to prevent resistance issues. Treating without first testing for infections may, in some instances, abrogate test results, making it harder to later identify chronic infections that go into protective mode and hole up in biofilm colonies.
All this said, some people here have just dived in and are successful. Others may find they later need to tweak their protocols. Generally speaking, it’s those with measurable inflammation who suffer most with Herxing and where “less is more” resulting in a need to start low and slow. This isn’t usually the case for those with normal SED Rates and CRP, as noted in the Pulsed Protocol Doctor package on the site, and who are able to tolerate the daily protocol. Tetracyclines have numerous immune-modulating properties and so these can also help speed up progress.
Personally, I prefer to err on the side of caution and would not self-treat. So can only speak generally as to what others have shared in the past. RBF only advocates AP therapy for rheumatic diseases, providing resources to share with doctors, so doesn’t offer medical advice, per se, as there are no medical professionals here.
I hope others will chime in with their personal experiences for you!
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