Home Forums General Discussion Help with Early Scleroderma treatment approach

This topic contains 5 replies, has 5 voices, and was last updated by  Maz 3 months, 3 weeks ago.

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  • #460472
    Pinkmoth
    Participant

    About exactly two months ago I woke up with very stiff hands. It progressed to joint inflammation everywhere, but especially in hands.
    I suspected a tick bite, because I had been tromping around in the woods a lot during that week and some of the friends I was with pulled ticks off of them. I have a red “bite mark” that has persisted to this day, but is now faded and less red. It never manifested the traditional bulls-eye rash.

    One month after onset of symptoms, I went in to primary doctor. started doxycycline 100mg 2x daily for 3 weeks while waited for lyme test and blood labs. Lyme came back negative and all my bloodwork looked fine including negative ANA. Primary doctor prescribes me prednisone, diclofenac and prilosec.

    I am scared of the pred and refused to take it but after a week the inflammation was so extreme I took 10mg of the prednisone as well as diclo and the pepcid. It really knocked the inflammation out. But I have skin thickening happening on my face and fingers still. I have taken the diclo for only 4 days and Im feeling stomach pain on my right side that is worrying me.

    I am not diagnosed yet for Scleroderma but but I have calcinosis on my wrist, telangiectasia present on lips and starting on fingtertips. Fingertips shiny and tight behind the fingernail and burning sensation on hands arms and sometimes feet. Noticing tightening of skin on face. I also had a genetic test done at 23andme a few years back when they gave out health information and it said I have genes for Limited Systemic Scleroderma. So, no official diagnosis but Im pretty convinced.

    Contacted the road back foundation asking about an AP doctor. Turns out there is one an hour from me. 3 days ago he prescribed me minocycline 100mg 2x daily on MWF. But I had read here that for SD, 100mg 2x daily non-pulsed was more effective. So im a bit confused. He also offers clindamycin IV treatments for 5 days in a row and I think I’d like to start those.

    I’m on week 3 of having cut sugary foods.

    I have my first appointment with a regular rheumetologist this tuesday, 4 days from now. It seems like an eternity waiting.

    I have a few questions – if you know the answer to or have an opinion on any of these, can you please let me know?

    QUESTIONS:
    – Should I order an Igenex lyme test? What do you do differently if you ARE positive for lyme?
    – How does one test for the presence of infectious mycoplasma in the blood and is this worth doing?
    – Should I go ahead with clindamycin IV treatments at the AP doc next week? does 5 days in a row seem normal? was 300mg a day the proper dose? I read something about clindamycin treatments making the bacteria resistant and possibly ruining the efficacy of antibiotic treatment. Does anyone know more about this?
    – I want to stop the diclofenac because im worried about my stomach but if the inflammation flares up again what should I take thats easier on my stomach? Should I ask my rheumatologist about plaquenil?
    – When cutting sugar in the diet, does this include avoiding fruit? What about breads?
    – What blood work, if any, should I have done at my first rheumatologist appointment? All my blood work my primary has run has come back “negative” (anti-scl-70, anti-nuclear AB, anti-centromere antibody) with the exception of the anti-smooth muscle ab which was ASMA positive and ASMA titer 1:20. I dont even know what positive results of this test mean…

    Im very scared right now and using this website as my main source of support and education. I hope I hear from you soon.

    #460473
    richie
    Participant

    One of the earlier markers for SD is a nail fold capillary test –very easy to administer –by the way I find telangecestasias on lips to be very unusual –how can you possible see them ???-Clindy ivs are a very good idea FOLLOWED up by 200 mg daily of minocycline –the daily dose is the gold standard for scleroderma —

    #460474
    Lynne G.SD
    Participant

    I certainly would have an Igenex test done as others are not very good.Lyme can really mimic SD.Look at this
    Somewhere in my mess of files I have info on it.Will check it out and then post it here.

    #460475
    PhilC
    Participant

    I wouldn’t say that Lyme Disease can mimic scleroderma. That’s the kind of thing a doctor who doesn’t believe that scleroderma is caused by an infection would say. A better way to look at it, I think, is to see scleroderma as (very probably) a possible manifestation of certain kinds of infections, with Lyme Disease being one of them. Some other possible manifestations are ALS, dermatomyositis, and rheumatoid arthritis (not an exhaustive list). Environmental and genetic factors probably play a role in determining which manifestation(s) a particular infected person ends up with.

    Phil

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

    #460478
    PhilC
    Participant

    Hi,

    3 days ago he prescribed me minocycline 100mg 2x daily on MWF. But I had read here that for SD, 100mg 2x daily non-pulsed was more effective. So im a bit confused.

    He may have started you on a lower dose because of your inflammation.

    Should I go ahead with clindamycin IV treatments at the AP doc next week?

    Because of your inflammation, it might be prudent to wait. If you try to kill the bacteria too quickly, your inflammation might go “through the roof”.

    I want to stop the diclofenac because im worried about my stomach but if the inflammation flares up again what should I take thats easier on my stomach?

    Good idea. Diclofenac is one of the more dangerous NSAIDs. Here are some good alternatives: nabumetone (Relafen), etodolac (Lodine), and meloxicam (Mobic). Celecoxib (Celebrex) is another one that many doctors seem to like to prescribe, but that one is a sulfa drug, and because of that some patients cannot take it.

    Phil

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

    #460479
    Maz
    Keymaster

    I have a few questions – if you know the answer to or have an opinion on any of these, can you please let me know?

    QUESTIONS:
    – Should I order an Igenex lyme test? What do you do differently if you ARE positive for lyme?

    In your shoes, I’d probably go to see an experienced LLMD, just because there is a recognition there that a tick bite doesn’t necessarily mean a rash or that Lyme tests will be positive. The diagnosis is a clinical one, taking in the whole picture of the person’s exposure to ticks, history, supporting labs, signs/symptoms. Ticks pass a lot more than just Lyme, so its possible not to have Lyme, but other – just as serious – tickborne infections. I was speaking with a conventional ob-gyne hospital nurse yesterday and she said they are finding Lyme in placentas, after delivery, but the mother is testing negative for Lyme and a year or so ago there was a report of babies being delivered with babesiosis that had never left the hospital – mothers were fine, but newborns weren’t okay. This says a lot really about the inadequacy of testing. An IgeneX western blot test is a bit more specific and sensitive, but it’s worth noting that Lyme is pretty immune-suppressive, so indirect tests that rely on the person’s ability to produce antibodies are not necessarily going to provide the answers sought. There have been folks here who have tested negative for Lyme, but when they start abx, they re-test months later and their tests are positive. Being on cortisone will allow the bugs to proliferate, but will also suppress antibody response to the bug, so while a person may be very sick with Lyme, the test may show little to nothing due to the immune-suppression. It is worth watching and reading these two links, as they should answer a lot of your questions – the doctor being interviewed in the video is a well-respected, highly experienced LLMD:

    Lyme and Reason (Fox TV Presentation)

    Lyme – an epidemic out of control

    – How does one test for the presence of infectious mycoplasma in the blood and is this worth doing?

    An experienced AP doc or LLMD will do this for you if you ask for this testing. It may help to get your IV clindamycin covered by insurance if you can prove infection. This is a bonus, but otherwise AP should cover its treatment and, if you do decide to see a LLMD, the oral antibiotic combination antibiotic protocols that are commonly used by LLMDs would cover Lyme, mycoplasma and other potential infections. Minocycline is preferable to doxycycline for any form of SD due to its superior tissue penetration, although its questionable if low, pulsed dosing is adequate for Lyme. Research out of New Haven Lyme Research Center has shown that low dose doxycycline just pushed borrelia burgdorferi into biofilms. Phil is right that this approach is more tolerable for the patient with a lot of inflammation, but one has to be careful with Lyme and work with a knowledgeable doctor.

    – Should I go ahead with clindamycin IV treatments at the AP doc next week? does 5 days in a row seem normal? was 300mg a day the proper dose?

    Why not? Just wondering about the low 300mg dose being used. The way Dr. Brown did it was to do 300mg twice on day 1, 600mg twice on day 2, then 900mg twice a day on days 3, 4 and 5. Did the doctor explain why he was recommending the low IV dose?

    I read something about clindamycin treatments making the bacteria resistant and possibly ruining the efficacy of antibiotic treatment. Does anyone know more about this?

    Can you share where you read this? The purpose of using IV clindamycin, a broad-spectrum antibiotic, at the initiation of treatment is to clear the body of bugs that may impede progress on oral minocycline (see Daily Protocols Doctor Packet under the Resources tab above). This is also described in The New Arthritis Breakthrough, which is very worth reading to get a full grasp of Dr. Brown’s rationale and approach to mycoplasma treatment.

    – I want to stop the diclofenac because im worried about my stomach but if the inflammation flares up again what should I take thats easier on my stomach? Should I ask my rheumatologist about plaquenil?

    Plaquenil is used in Lyme protocols, because it is an anti-malarial, used for protozoan infections (Clindamycin acts similarly) and has some nice anti-inflammatory properties. It’s fairly benign in the doses used today – in the old days, much higher doses were used and this caused eye toxicity, but is extremely rare in lower doses. Just need to take it with food, as it can cause stomach upset in some folks.

    – When cutting sugar in the diet, does this include avoiding fruit? What about breads?

    People with candida issues usually try to cut out all simple sugars, yes. However, with adequate probiotics and supplements that help control candida (curcumin or bovine colostrum, for example), it is possible to still eat fruit. Breads are different – gluten is a problem for many as it is inflammatory and contains yeasts which can promote candida. Candida leads to leaky gut and many rheumatics, if not all, have some degree of leaky gut, according to experts. Of course, pain meds will worsen this issue, as they lead to tiny, microscopic gut lumen perforations. Worth reading up on leaky gut and ways to control it. Josh Axe has a good blog with helpful info on leaky gut, for instance.

    – What blood work, if any, should I have done at my first rheumatologist appointment? All my blood work my primary has run has come back “negative” (anti-scl-70, anti-nuclear AB, anti-centromere antibody) with the exception of the anti-smooth muscle ab which was ASMA positive and ASMA titer 1:20. I dont even know what positive results of this test mean…

    You can look up any bloodtest and what it is used for at Lab Tests Online

    Your rheumatologist will probably have a good idea of which tests to run to diagnose you and best to wait to see what is run first – there may be others, like thyroid tests, that your GP or AP doc can run, if needed later. Tests that the rheumy might run may include an ENA panel, as you have positive ASMA, which is associated with lupus. Ultimately, it may reflect a mixed connective tissue disease (MCTD) presentation, which is pretty common among Lymies, as Lyme can present in a confusing array of symptoms that may look like more than one rheumatic disease. Sometimes it can take a while for seropositivity to show up in early disease, which is one reason that rheumies can take time diagnosing those with SD-like symptoms.

    Im very scared right now and using this website as my main source of support and education. I hope I hear from you soon.

    Glad you found us, Pinkmoth. Hang in there…the early days are a bit scary, confusing and painful, but there have been thousands who have passed through the RBF forum in the last couple of decades and you will find others in a similar boat, over time, and can compare notes. You might like to search for Kim’s posts. She’s a now-retired volunteer, but had MCTD and Lyme and she was able to reverse her disease in a couple of years and was doing pretty well when she retired some years ago.

    Some additional supps you might like to research are N-AC and systemic enzymes. Both are biofilm busters. N-AC and curcumin help to promote glutathione in the body to help detoxify and protect the lungs. Also, be sure to get on good quality probiotics in sufficient amounts, taken a couple hours after each abx dose to replenish the good bacteria in the gut. These really aren’t optional, but essential to preserving gut health. Perhaps your current AP doc is helping with this kind of thing?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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