Home Forums General Discussion Just found out I had scleroderma today!

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  • #308330
    JustDiagnosedChris
    Participant

    Hello everyone! My name is Chris DiPaolo. I am a 22 year old male college student living i southern California.

    For about 5 years(maybe more) I’ve had autoimmune symptoms. I know for at least 3.5 years I have had elevated ANA markers in my blood.

    Just last monday, June 9th 2014, I had blood drawn and a pretty complete autoimmune panel done at my new PCP’s office. He’s a knowledgeable guy. It seems the non-specific ANA has finally become scleroderma antibodies. I’ve had raynauds and a very very irregular and weak heartbeat for about 4 years. I don’t have many skin problems, and my internal organs(last I checked 2 years ago) were completely fine.

    Without further ado, I would like to say, being from Massachusetts( only 45 mins from Boston) I am very tempted to bypass prolonged and painstaking visits to rheumatologists, and just get straight to AP therapy with antibiotics. I believe I am early enough in my condition to actually reverse this disease. 2 years ago I had more tests done on my heart than anyone can imagine, and it showed that it wasn’t damaged yet.

    I need to act now to save my life. Please, I am not kidding. I have 0% experience or knowledge with these things. I’m a 22 year old dude for pete’s sake!

    Contact me for my e-mail address as I will be needing all the help I can get. I am willing to even give out contact info if anyone has some good information they could share with me. Thank you every one and I hope to hear from you soon.

    With my very best regards,

    -Christopher DiPaolo

    #372430
    lynnie_sydney
    Participant

    Hi Chris and welcome. You will find some great support here and good for you to wanting to be pro-active, it will serve you well.
    Please take a look at the testimonial of Jessica, daughter of Cheryl F, who was 16 when she was diagnosed and whose diagnosis brought Cheryl F (now President of RBF) to this site. Her testimonial is on the main site. I’m posting a link below. I’m sure Cheryl will post when she sees this, as will plenty of others. You will find lots of help, support and wisdom here, so please stay around.

    https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/489.html

    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)

    #372431
    JustDiagnosedChris
    Participant

    i have heart involvement and a weakened pulse. does this mean im too far along for the antibiotics to help? i really don’t want to die.

    #372429
    Cheryl F
    Keymaster

    Chris:

    Welcome to this forum, the people here are great and will provide support and share what has worked for them, which in turn can leverage your own choices of how to proceed.

    Please email me at Cheryl.e.ferguson@gmail.com. I will answer any question you have from a patient’s (well parent if a patient) perspective. Let me know where in SoCal you are. I will give you my phone number and we can talk by phone if you would like.

    Regarding your question of whether it is “too late” to use AP due to your heart symptoms, I am not a doctor, but my answer would be, no, it is not too late, but those symptoms must be monitored and possibly treated with conventional medications while using AP. You need to manage any progressing organ symptoms while giving AP time to treat the underlying condition.

    I am in California as well and am familiar with the AP doctors in our state, let’s connect soon!

    Cheryl
    Mom to Jess currently age 24, Sd Dx May 2006, AP Late June 2006

    #372428
    JustDiagnosedChris
    Participant

    I am sending you an e-mail right now!

    #372432
    Maz
    Keymaster

    @JustDiagnosedChris wrote:

    Without further ado, I would like to say, being from Massachusetts( only 45 mins from Boston) I am very tempted to bypass prolonged and painstaking visits to rheumatologists, and just get straight to AP therapy with antibiotics. I believe I am early enough in my condition to actually reverse this disease. 2 years ago I had more tests done on my heart than anyone can imagine, and it showed that it wasn’t damaged yet.

    Hi Chris,

    You’re in luck – as no doubt Cheryl will let you know when you get a chance to speak with her, one of the most experienced rheumy AP docs is located in Riverside, CA, and has successfully treated many scleroderma patients with AP. Here’s a Youtube of this doc talking about this:

    https://www.youtube.com/watch?v=tyuHcRoFWBY

    However, just a heads up…as you hail from MA, you may also want to check into the possibility of Lyme disease and other tickborne infections that may have caused this problem for you. Again, though, am sure Cheryl will provide you with a great overview on this. Here is some literature on the subject for your possible interest:

    viewtopic.php?f=1&t=9347&p=69024&hilit

    No doubt, some SD old-timers who still frequent here will chime in with their AP success stories for SD, but you can also read the testimonials on the main site by clicking the banner at the top of this forum that will re-direct you there. Those who get well again on AP tend to move on with their lives and don’t need to visit here often, but a few still pop by to lend their support to others. So, hang in there and keep posting and no doubt you’ll bump into a few as time goes by.

    #372427
    JustDiagnosedChris
    Participant

    If I do need some help with possibility of Lyme disease, who can I see about that? Should I see 2 different doctors?

    #372433
    Maz
    Keymaster

    @JustDiagnosedChris wrote:

    If I do need some help with possibility of Lyme disease, who can I see about that? Should I see 2 different doctors?

    Some people prefer to see Dr. F. as he can act as a one-stop doc – both rheumy and supportive of AP, as well as to see a Lyme Literate MD, because Dr. F. is not Lyme Literate. Really depends on your circumstances, Chris. If you already have a rheumy to oversee you and monitor your SD who you like and who can provide any adjunctive medicine supports you may need along the way, then you might only need to see a LLMD for abx therapy, if you find it’s in your mix. May also depend on your finances, because most LLMDs work out-of-network.

    Would you like me to send you a list of LLMDs for CA? There are some very experienced ones out that way, as well as in and around the NYC area, if you prefer to head out to the east coast.

    Although standard testing for Lyme (ELISA and western blot) is covered by insurance and you may be lucky and get a positive result, IGeneX.com, out in CA, is the LLMD-preferred lab for testing. You can call the lab to mail you their Lyme testing kit. Their basic western blot test (includes more, very specific antibody bands that are not included in standard western blot) can often provide sufficient evidence of exposure to Lyme and it costs around $200 that will save money on doing any heavy-hitting Lyme panels. It comes in two parts (IgM and IgG) and the test numbers are 188 and 189. They require a doc to sign off on the lab requisition and then the test results take about 2 weeks to be returned to the ordering doc. Really important to get hard copies, because if the ordering doc is not Lyme Literate, they usually won’t have any idea how to interpret the results. ๐Ÿ˜‰

    #372424
    JustDiagnosedChris
    Participant

    I would definitely like to do that at some point. I am feeling so overwhelmed, I have so many symptoms from so many different things. I just don’t know what to do.

    I had a complete blood workup done, along with an autoimmune panel, and while all my organs and CBC etc. were fine, I showed positive for Scleroderma antibodies.

    So I should probably start with addressing the scleroderma first, then worry about Lyme next, right?

    #372425
    Maz
    Keymaster

    @JustDiagnosedChris wrote:

    So I should probably start with addressing the scleroderma first, then worry about Lyme next, right?

    Again, this is a personal choice. Some folks do just fine on minocycline 100mg twice daily – the basic SD protocol, called “The Harvard Protocol.” Others find that they don’t do so well over time and need to dig a little deeper later. It can save some time down the road to look into the Lyme question early on, especially in terms of getting testing run prior to starting abx, but others have gone on basic AP and got tested later, too. Abx shouldn’t alter the basic western blot test much, which is basically just measuring your antibody response to various Lyme bug proteins. If other testing needs to be run, though, like PCR testing, it may require stopping abx for up to a month in order to get a more accurate result. ๐Ÿ™‚

    You really shouldn’t stop getting started on minocycline asap, because you want to get some treatment quickly. If you have an appt to see an AP doc that is a few weeks away, however, it wouldn’t hurt to get the IGeneX testing run while waiting just to get a head start. ๐Ÿ˜‰

    #372426
    JustDiagnosedChris
    Participant

    There is something wrong with my heart. It never beats right AT ALL. 2 years ago I had in depth testing and they said that the heart function was normal and did not appear to be damaged when they did the ECG. I feel it has stayed the same. But it’s just really wacky.

    I don’t know if it’s from scleroderma, lyme, or the fact that I starved myself for a whole year. I mean STARVED.

    Guys I am here in my room crying because I am convinced that this heart issue is the one thing that is going to keep me from getting better or stopping the progression of my illness. I need some assurance that there have been other sufferers with heart issues who either were healed or at least stopped the condition fro worsening. I read on Dr. F’s website that the patients who have organ involvement of any kind usually are not the ones who get healed (either reversed or stopped). I am so scared.

    In the past 3 years, every EKG has come back normal. The ECG 2 years ago showed no damage, and I am still able to walk 20 miles in one day if I need to. I work as a landscaper for a living so I know I can handle hard workouts.

    But I am so scared that the fact that I’ve had heart issues for at least 5-6 years, (Maybe before that I don’t even know, never went to the doctor as a teen, not even once) means I won’t be able to get any better and that I am gonna swell up hard as a rock from the inside out and explode and die.

    I am so scared and alone I can’t even communicate the level of fear I have right now.

    As I said, my bloodwork for my organs came back normal.

    Is there anyone who knows the connection between scleroderma/lyme and chronic heart irregularities that never go away?

    I would SOOOO much appreciate some input.

    Thank you and God Bless.

    RBFV Edit to remove AP Physician’s full name as per forum guidelines to protect doctor privacy. Thank you for your understanding.

    #372423
    kater
    Participant

    Dearest Chris
    I can relate to your fear–when I first found out I had scleroderma of the diffuse systemic type I thought my time might be cut short. I was blessed to find the Roadback. That was 3 years ago and I have almost no symptoms of scleroderma left! I have been on AP for 2 and a half years, and lyme treatment for 2 1/4. It seems much of scleroderma is actually Lyme or some other infection. The allopaths say it is SD. The lyme doc says it’s Lyme that behaves like SD. I play the dual diagnosis to my advantage whenever I can ๐Ÿ™‚ I do not believe I have organ involvement –though until last week I have never convinced anyone to check other than with bloodwork! I finally had an echocardiogram and PFT and get the results tomorrow. I will report back. Its a bit nerve wracking that something might show when I think I am doing so well. My Lyme test cd57 just came back at 95 and hoping to wean off some of the meds soon. Take one day at a time. Your heart issue may be something completely unrelated if its not showing on tests. I have heard from people with SD who have actually been given a short time to live and have turned it around with AP. It is a long slow road though you must know that and you need to decrease your stress and take care of your body. Cutting gluten, dairy and sugar out will help a lot and so will juicing and eating fresh. I left work for a year and just immersed myself in everything healing. Have faith in this Chris. Sending you a healing hug from the left coast of Canada
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #372422
    Maz
    Keymaster

    @JustDiagnosedChris wrote:

    I read on Dr. F’s website that the patients who have organ involvement of any kind usually are not the ones who get healed (either reversed or stopped). I am so scared.

    Chris, do what you can to avoid stress and worry. Easy to say and hard to do – but these “autoimmune” diseases feed off stress, which disable immune function further and stress the adrenals. Hang in there, because there are many people here who have reversed lung fibrosis and stomach issues with AP, conventional and supplemental supports. You will learn about these by talking with others and reading here as time goes on.

    In the past 3 years, every EKG has come back normal. The ECG 2 years ago showed no damage, and I am still able to walk 20 miles in one day if I need to. I work as a landscaper for a living so I know I can handle hard workouts.

    Didn’t realize you were a landscaper, Chris. This, of course, puts you in the high risk category for Lyme disease and likely other tick-borne co-infections, especially in both areas in which you’ve lived/frequented – CA and MA. Might just be in your best interests to also see an experienced LLMD (lyme literate MD) for a comprehensive assessment. If you want a LLMD list for either CA or MA/northeast US, then just let me know. You can email me direct at: maz@roadback.org Diana can provide you with AP Physician lists, but I send out the LLMD lists.

    But I am so scared that the fact that I’ve had heart issues for at least 5-6 years, (Maybe before that I don’t even know, never went to the doctor as a teen, not even once) means I won’t be able to get any better and that I am gonna swell up hard as a rock from the inside out and explode and die.

    Fortunately, you found abx therapy very early on and you’re young and pretty fit. Many others before you haven’t been in such good shape and still managed to reverse their SD.

    I am so scared and alone I can’t even communicate the level of fear I have right now.

    You’re not alone – you’ve found a fantastic community of folks who can all appreciate the fear you’re experiencing right now and will be here to support you and offer you personal experiences of how they managed things on their road to wellness.

    Is there anyone who knows the connection between scleroderma/lyme and chronic heart irregularities that never go away?

    Yes, my RA was triggered by chronic, late stage Lyme here in CT and for years prior to the RA starting, I had heart irregularities (racing palps and thudding PVCs) that would come in rounds after a ‘known’ (probably others I didn’t know about) tick bite in 1998 when I didn’t see any rash. The connection to Lyme was never made till 2006, because all my early symptoms (migraines, light sensitivity, heart symptoms, anxiety, hot flashes/chills, creepy-crawly skin sensations, muscle twitching, etc, all came and went in rounds and rarely occurred together). I had every heart test under the sun and nothing showed up, except for some runs of palps that were found to be benign. Not only can Lyme cause this (and more serious issues, like pericarditis), the coinfections, like babesiosis, can also cause tremendous anxiety and chest wall pain and air hunger. While SD, itself, can also cause vascular spasming, once the underlying infections are properly treated the SD and its associated symptoms begin to regress. I only made the connection to Lyme when I got bitten again (never saw the ticks) and had two bulls-eye rashes. It was during a particularly stressful time (mother dying) and my immune system just crashed…went from early, classic Lyme symptoms (migrating joint and muscle aches, flu-like symptoms and stiff neck) to all-out RA within 2 months. There are many others here who also have heart-related symptoms due to Lyme disease, which can overlap with the actual rheumatic disease, so it can be a real challenge to discern what is what. When I asked my LLMD what I had – Lyme or RA – he said it was both, but that once the infections were controlled adequately, the RA should begin to remit. This is a familiar story around here.

    Watch for folks posting, like Kater and Richie, both of whom have recovered from systemic SD. There are many others here, too, who pop in occasionally, so just stick around and check in daily and you’ll find many just starting out, like you, some well on their way, and others who check in to say they’re in remission and to cheer others on.

    #372434
    JustDiagnosedChris
    Participant

    This is a really important question. For those who have experience with SD and AP;

    Since I started getting symptoms around age 13/14 and I am now 22 and 1/2, DOES THAT MEAN that this disease is now “part of me” and the answer to why it’s progressing so slowly? If I start AP will it actually accelerate the disease? Will it end up making it worse or not doing anything at all?

    I remember when I was on Cipro for a UTI back in 2011, it made my raynauds permanently worse, and that’s when I originally noticed the brown spot appearing on my left arm that looks like a typical scleroderma spot.

    Does the theory I’m giving make any sense at all?

    Bottom line: The longer an individual has had the illness, regardless of severity, does it nullify the usefulness of the AP treatment? And can the AP treatment make it worse?

    Please Please please, I am having trouble even sitting here in my dorm without freaking out.

    #372435
    enzed
    Participant

    Hi Chris,

    Stress and panic attacks can mimic heart problems causing a person to think they have a weak or damaged heart when in fact they don’t. You sound really panicky and having ‘panic attacks’ won’t help.

    After one and a half years on tetracycline antibiotic therapy my blood tests are normal, I have no organ involvement, many of my scleroderma symptoms have just gone away, including skin thickening and dry eyes. My most recent blood tests were normal as were my annual tests, a cardio echo and a lung / respiratory test. I’m 68 years old, was ill for years before I found this forum, and now much better and still improving.

    I think you need to contact one of the doctors that have been recommended to you by others on this forum and then take the tests you need to take, start the antibiotic treatment under the doctors supervision, educate yourself on this website, take a deep breath and well – calm down.

    I think the worst thing we scleroderma patients can do is get onto the wrong websites where they post the ‘doom and gloom’ versions of scleroderma and scare the hell out of everyone. Three years ago I could hardly open my mouth – today it is back to normal. Scleroderma doesn’t have to be progressive as they claim on those awful websites. It can be halted in its tracks and even reversed.

    Cheer up Chris, you are amongst friends here who understand and support recovery, not spend their time scaring others for the hell of it. Hang in here, and you will find the information here calming and reassuring and very supportive of your own personal road back. I suspect you have been reading scleroderma information on the wrong websites. It woulds explain your panic.
    Take it easy.

    enzed.

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