Home Forums General Discussion New Blood Test for Scleroderma

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  • #464499
    Mountains
    Participant

    Hello all,

    Several years ago we were on the SIBO warpath and had no idea our daughter had Scleroderma as the root cause of her Small Intestinal Bacterial Overgrowth and Acid Reflux. We were working with a SIBO Specialist in the NW USA that was consulting with Dr. Pimentel regularly. This SIBO Doctor recommended we get the IBS check test done. Dr. Pimentel is the inventor of this test. The results showed an attack on the Vinculin that was extremely high. The Doctor said it was the second highest test results she had ever seen. She then recommended we get an ANA done. The ANA was not a test she normally ran and I wonder if it was Dr. Pimentel that suggested it since they were working together on several projects. Sure enough, the ANA came back positive for the Centromere Pattern at 320. That was our first clue something other than SIBO was causing her Gastrointestinal Issues. So for us, this test was helpful because it helped us get to the root problem quicker than the typical conventional route. If you are already diagnosed I don’t know how helpful it will be other than perhaps evaluating healing progress but I would imagine most people would just go by relief of symptoms to assess their progress. Because she had the test before starting any treatment for Scleroderma I would be interested in redoing this test again once her reflux has improved. I believe it had cost us $100 to get the IBS check test done but now that it has been found to be a helpful diagnostic tool the price may have gone up. It use to be available for purchase online just like a Lactulose breath test but both of those test go back and forth as far as public (no prescription) availability. I’m going to ask her GI Specialist about it to see if we can run it again in the future once her improvement affects her GI tract, which up to this point it hasn’t yet. Her improvement has been very good with joint pain and Raynaud’s in the 5 months on the AP so far. Her GI symptoms were the first symptom and her worst symptom so I expect improvement will take a while. So we wait. Anyway, I thought some of you might find this test interesting.

    http://www.rheumatologyadvisor.com/home/topics/scleroderma/novel-blood-test-may-aid-scleroderma-diagnosis-and-risk-stratification/

    #464501
    Lynne G.SD
    Participant

    Hi exausted maman;
    How many antibodies was she tested for?I don’t know if you read Ed’s great site http://www.sclerodermainfo.org It has the most up to date info on everything SD

    #464502
    Mountains
    Participant

    Hi Lynne,

    I have never heard of Ed or his site so thank you! Our daughter has had many, many tests done but to answer your question about how many antibody tests she has had done, it has only been a few (about 4 that I can think of). I guess the Vinculin test counts as one, that led to her first ANA and just 5 months ago we did her second ANA and a full Thyroid panel. The Thyroid antibodies were super high but her thyroid function is still good. This second ANA showed her Centromere pattern doubled and is now 640 and a new Speckled Pattern at 160. This was all done before starting AP.

    My latest hurdle is about whether or not to continue the Erythromycin. She had been on Azithromycin for 5 months and the joint pain and Raynaud’s are GREATLY improved. But the Reflux has continued to be a BIG problem. Her GI Specialist was open to trying Erythromycin for the prokinetic properties (my idea from my SIBO days) but I just read in the Doctor’s Packet on this site that Dr. Brown said to be careful of Erythromycin with Lupus, better said the M. Hominis Mycoplasma because Erythro can be resistant to this Mycoplasma and because it can worsen Lupus symptoms. So first of all, I reason within my very cluttered and stressed mind, that her testing positive for the Speckled pattern doesn’t have to mean she has Lupus mixed into her autoimmune cocktail. It could be a number of other things that caused it to show up. But aside from testing for the Hominis mycoplasma, which I don’t even know if there is a test for and we can’t do right now anyway, do we take the chance and possibly slide back, potentially making her symptoms worse by trying the Erythromycin for a time??? The dilemma is made worse because even though she has only been on the Erythro a few days it IS clearly working to help her GERD. It seems to have lessened the amount of reflux she is having and we aren’t even up to the full dose yet. NOW, when I say it’s working I mean as working as a prokinetic. I have no idea if it is addressing her Mycoplasma. That is the dilemma. According to the info in Dr. Brown’s notes IF she has Lupus, the Erythro could be doing nothing for her Mycoplasma. Another issue I need to think through is, the dose we are working up to per GI Specialist orders is 250mg 4 times per day. That’s a lot of Erythro for a 90 lb girl. I understand the Mycoplasma is cell wall deficient so I’m not necessarily worried about antibiotic-resistance but how does this affect her liver? But her liver enzymes have been elevated so I want to be cautious.

    #464503
    Spiffy1
    Moderator

    Mountains, I have nothing knowledgeable to add to your response. But I do want to just put out there that you are an amazing person and an amazing mother. Amazing things are going to happen.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #464504
    PhilC
    Participant

    Another issue I need to think through is, the dose we are working up to per GI Specialist orders is 250mg 4 times per day. That’s a lot of Erythro for a 90 lb girl. I understand the Mycoplasma is cell wall deficient so I’m not necessarily worried about antibiotic-resistance but how does this affect her liver? Her enzymes have been elevated.

    Has her doctor considered using clarithromycin?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #464505
    Mountains
    Participant

    Oh Spiffy1! Your words are too kind.

    #464506
    Mountains
    Participant

    Thank you Phil. I will look into that possibility. I think in my search on this site you had posted some information about this particular antibiotic. I’ll go back and reread the information as well as investigate Pub Med to see if it is a good prokinetic option. It’s always a relief to learn of another drug possibility.

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