Home Forums General Discussion Juvenile Scleroderma Diffuse & Lymes, related? Any experience with this?

This topic contains 14 replies, has 7 voices, and was last updated by  Peachy 5 days, 7 hours ago.

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  • #464905
    CherryBaby
    Participant

    Hello my 12 year old son was just diagnosed with Scleroderma. His hands are tight and he can’t make a closed fist. He can’t sit cross cross either. Other than that no other symptoms. He is in no pain. He is a very sporty and active boy. The doctor is amazed we caught it so early.

    His pediatric rheumatologist started him on Nifedipine daily, folic acid daily and a .8mg methotrexate shot weekly.

    His blood work came back. He doesn’t have any of the auto antibody markers except for Fibrillarin but it’s a weak positive. Doctor said we can’t tell much from this marker on its own.

    He did test positive for Lymes by the Western Bot year. His IGG was positive but IGM negative. Doctor says the two are unrelated and not worried about the Lymes and that it’s not active since the IGM is negative.

    Not sure where to go from here. I am sad, confused and worried. Any guidance is appreciated.

    Thank you

    #464907
    Luck20
    Participant

    I’m so sorry to hear this. It breaks my heart to hear of someone being diagnosed so young! The only good thing is that he has parents willing to think outside the box and look for answers.

    Many of us believe lyme is a trigger for this or some other underlying infection. Once its treated, the disease fades away. I think your on the right path.

    I was diagnosed a year and half ago and for me, the disease was very aggressive. Things went downhill fast. Luckily I found ‘The Road Back’ and I’m doing much better! It’s slow progress but I’ve come so far that I feel overwhelmed with gratitude. My hands got especially bad in just a couple months. Now the collagen is breaking down and I’m regaining flexibility and able to cook meals for my family again. At one point, I was on the edge of losing my ability to dress myself. It was a rough time but I hung in there and now its paying off. I’m not fully healed but I note new, positive differences everyday. It feels like a miracle. I don’t want to go on and on bad stories of how tough it got, I just want to let you know there is hope and don’t believe anyone that tells you different. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464908
    Luck20
    Participant

    Also, be sure to read over all the information for support on this website. Lots of good info that can help inspire you. On the top right is an icon to click on and there is research, question and answers, inspirational stories, a printable drs packet and books that can be ordered off Amazon of people’s stories that recovered using AP protocol. Its heartbreaking he is so young but I think youth sometimes has the benefit of being able to turn this thing around easier. If you contact ‘The Road Back’ they can provide a list of doctors.

    I know it’s a rough time, but try to hang in there.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464909
    Maz
    Keymaster

    Hi Cherrybaby,

    I echo Luck’s fine sentiments above. If this helps at all as you navigate the confusing madness that is Lyme, there are different schools of thought regarding chronic Lyme! If you click on FAQ #34 on the website, Dr. C. describes Lyme as a chronic relapsing-remitting infection whereby results become blurred on the western blot test in regards to IgM (present infection) and IgG (past infection. He writes:

    Dr. C’s Western Blot Explanation

    Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

    But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

    Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

    So, it really depends who you’re talking with in the “Lymelands” – the physician-experts on the front lines who treat tickborne illness on a daily basis or other physicians who do not adhere to infectious theory of rheumatic disease and, although it is acknowledged there may have been an infectious trigger, the infection is long gone…. but where to? Why is it acknowledged that TB, leprosy, strep, syphilis, or rheumatic fever can have chronic forms but not Lyme disease? Syphilis is a similar corkscrew organism that can drill into any body tissue and, if untreated in the early stages, can be chronic and unrelenting. So, if you’re interested in learning more about borreliosis and other associated tickborne infections also transmitted by ticks, there are some enlightening books out there, including “Cure Unknown,” by Pamela Weintraub, science writer for Discover Magazine and The Widening Circle,” by Polly Murray, the Mom who initially reported the large cluster of kids and adults falling ill with rheumatic diseases in her town of Lyme, CT.

    The best way to make treatment decisions is to get as informed as you possibly can and then to decide for yourself what treatment path makes sense to you. No one here tries to convince anyone of anything – just info-sharing – but the stories on site and those of folks still on their roads to remission are quite convincing, like Luck above! The old-timers around here have seen SDers get well on antibiotic therapy so many times, we’ve all lost count. As Luck says, it’s a slow therapy with no overnight miracles. Patient experience follows a generally similar pattern, where in the first year it is more about slowing the progression “freight train” down, after which noticeable improvements in function are seen. The foundation president’s teen daughter is a case in point and why her mom still volunteers here. It is very worth talking with Cheryl Ferguson if you get a chance! You can PM her on this forum and she is pleased to talk with other parents whose kids have SD.

    #464913
    Mountains
    Participant

    Hello Cherrybaby,
    I’m so very sorry your son and family are going through this. I too have a 12-year-old with Scleroderma (a girl). She has had many symptoms come and go. As far as we can tell she started to get sick around age 8 but it wasn’t explained until she was 10. Her symptoms seemed to subside for a time and we were trying different things and different Doctors when I came upon the roadback last year. Our daughter tested borderline to one doctor and negative to another for Lyme using the Western Blot. To make a long story short I didn’t think Lyme was really her issue until I learned more and she had 9 weeks of Lyme treatment using antibiotics which resulted in great improvement and then with a different Doctor we moved on to Azithromycin 250mg MWF, later uped to M-F, which is even better for her. So between the Lyme treatment and the time she has been on Azithromycin, which is the antibiotic of choice for children under 15, she has improved greatly with her joint pain. To give you an idea of where she was, she had gotten to the point where we purchased a wheelchair because walking around stores or public places was too painful for her. We got rid of the wheelchair in August because she hadn’t needed it in months. Her hands were getting tight and they are now back to normal. Her Raynaud’s was very painful and happening several times a day, every day, no matter how warm I kept her. The Raynaud’s also affected her eyes. She goes black for a few seconds and then her vision comes back. Very scary for her. It was happening several times a week and sometimes multiple times per day. That too stopped on the Azithromycin. The only symptom she has not seen relief with is the GERD but I really feel it’s because we need to treat her a bit more aggressively and of course longer, since she has been sick since she was 8 years old and only had treatment for 1 year now. I can tell you that I know the antibiotic is working because we recently didn’t get the prescription filled in time due to office staff shortage and just a week without her meds caused her Raynaud’s to come back with a vengeance, including the few seconds of vision loss, also her joint pain started bothering her regularly again. We also had another time not too long ago when we tried Erythromycin for a few weeks. That antibiotic, although in the same family didn’t work for her. Her symptoms came back and started to go away again after she was back on the Azithromycin for a week. This health problem is challenging but know that your son can improve. Do you have a Doctor open to the Protocol yet? Feel free to Private message me anytime. Everyone here understands and has been a wonderful support to my family and I. They have so much knowledge and insight and I just know the information on this site will help guide you as you decide what is best for your child. It’s a daunting task as a parent to make these decisions but knowledge is power and there is a lot of knowledge here. Wishing you and your precious boy the very best!

    #464914
    Lynne G.SD
    Participant

    hi mountains;
    Have you tried digestive enzymes for your daughter’s Gerd? All of us SDers havedigestive problems.The enzymes make one digest faster so that no food is left in the stomach to cause the problem.It took a couple weeks on them to not have any gerd or reflux.I found the best was made by GNC.A big blue or beige bottleof 240 capsules only costs around 30$

    #464915
    Luck20
    Participant

    Hi Mountains,

    Hopefully the GERD will keep improving over time. It seems a slow process for the esophagus to repair itself, but I know it’s happening. I’ve been off the prilosec for months and just resort to a tums from time to time. It’s a huge difference over 15 months ago. The other day I ate too big of a meal and was bending over in a closet looking for something right afterwards. Nothing came up! It was amazing. Before, even within a couple hours of eating anything at all, I would have problems. I’ve spent the last year avoiding bending over. It’s not 100% gone. I still have things trigger it randomly for no rhyme or reason but it’s less and less. Up until a couple years ago, I didn’t even understand what heartburn was. It came with the disease…

    I know your daughter has reflux much worse, but I do think it’s possible to get better in people as they heal. Hopefully her’s will get better too!

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464918
    CherryBaby
    Participant

    Thank you everyone for the information and support. I am so confused and worried.
    My son thank God continues without pain, it’s just that he can’t make a fist, tight hands and can’t sit criss cross.
    We just found out 2 weeks ago and I am not sure where how to go from here as far as to doctors. We have an appointment with a Functional Medicine Doctor tomorrow, would they be open to protocol?

    Do I need to visit with a specific AP doctor? Do I need to go to a pediatric scleroderma specialist? (I will go anywhere in the country) so I need a lyme specialist?

    Mountains, thank you for sharing your daughter’s journey, I would love to chat more. Thank you for the offer.

    #464919
    Luck20
    Participant

    One tip, usually with the functional medicine drs, they usually don’t take insurance and you need to pay out of pocket.

    It’s good to get as many labs as you can run thru a regular rheumatologist and plan on continuing with every 3-4 months for insurance covered labs. On AP or any lyme meds it’s important to still have the usual labs run.

    Not all functional medicine drs specialize in lyme and some might not be aware of AP. If your paying out of pocket for care, make sure their offering what you want for treatment and willing to work with you on what YOU want for your son. Sometimes functional drs focus more on diet, supplements, lots of testing (maybe more than you want/need) and get cautious about using antibiotics. The Road Back can offer up names of known ap or lyme drs but there are probably many more than their aware of. Just be certain your on the same page with the dr if you have limited funds for out of pocket expenses. It can add up real quick!

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464920
    Mountains
    Participant

    As was probably mentioned by someone else be sure your Functional Medicine Doctor can write prescriptions. If you are planning to do the Antibiotic Protocol you will need a Doctor that can prescribe. We have a Functional Doctor that is also an MD and can provide the best of both worlds. We got his info from the road back. He is in GA. There are others though if travel is not possible. The road back can provide you with a list of Doctors that either have experience with AP or are willing to consider it in your state or a state close by.

    #464921
    Mountains
    Participant

    Hi Luck20,
    We have tried digestive enzymes for some time now. It doesn’t seem to be helping. I just think we need to be a bit more aggressive, maybe adding on another antibiotic or a round of Clindy IV and also give it more time. Acid reflux was her first symptom and her worse since day one. Everyone is different and I think for some reason her esophagus is her Achilles heel. We have an appt w Dr. F in CA next month. I’m very excited. He is experienced and I think he will get to her severe GERD. Hope you’re doing well these days! Sending a big hug!

    #464922
    Maz
    Keymaster

    Cherrybaby,

    Click below to find the foubdation’s Doctor Search page. Instructions for use are on that page and you can request either 3 AP doc lists and 3 LLMD lists. AP docs tend to use monotherapy for the most part (I.e., oral minocycline or doxycycline and sometimes IV clindamycin to give oral therapy a boost). However, if you suspect Lyme, an experienced LLMD is the optimal way to go.

    Doctor Search page

    #464923
    Luck20
    Participant

    Hi Mountains,

    So glad to hear your taking her to Dr. F. I hear such good things! I’m excited for both of you. That’s wonderful he treats kids too. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464924
    Spiffy1
    Moderator

    Keep in mind that even if your functional medicine doctor does not take insurance or your particular insurance, they can still write a requisition form for Quest or Labcorp and the blood draw can still be covered by insurance regardless if you have to pay out of pocket to see the doctor.

    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

    #464925
    Peachy
    Participant

    Hi Cherrybaby, sorry to hear about your son. My suggestion will be to go and see LLMD. If you need one you can PM me and I can share my doctors name and phone number. He treated my daughter with Lyme and now she is doing great.

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