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I recently tested positive back in Feb for SCL-70 with a value of 8.0 (high) and got myself to a scleroderma specialist in Philadelphia. He did all the vital organ tests and everything seemed to be fine however, after seeing him I began some swelling in my hands in April. I saw him this past Friday and we did a capillary test and reviewed the findings of my tests. There was no indication of Scleroderma in the capillaries. When I asked about the swelling, he explained it could be due to RA and is running more blood work. He also ordered a CT of the chest as he is concerned about early ILD. He indicated the numbers on my PFT were a bit low but I should not get too concerned. Well I’m terrified! I have a history of lymes and was treated with IV antibiotics. I just had my second daughter, a beautiful baby girl last Spring and life seems ever so cruel right now. This is the only place that has given me hope after pouring hours into research at the possibility of SD, RA and maybe even ILD. I would like to find a doctor in the state of PA or NJ as soon as possible. Any recommendations would be so appreciated. Thanks so much for listening.
Hi Mssada33,
My best suggestion, as someone with a history of tickborne illness, is to see a Lyme Literate MD. Were you able to get the “most experienced” LLMD list from the automated doctor search system? If not, I’d be happy to send you this list. There are a few excellent – experienced – LLMDs in your neck of the woods and, with a history of tick bite(s), you may wish to get tested for potential coinfections, as ticks pass innumerable other infectious diseases that can require separate long-term attention.
I think you mentioned flying out to see Dr. F. in your email, but he isn’t listed as a LLMD and there is one experienced LLMD rheumatologist in Maryland who may be closer to home and less costly for you? There is also one of the top infectious diseases LLMDs in Washington DC. Just let me know if you’d like this list and I’ll send it in a private message.
Welcome to the RBF forum – hope it’s not long till you’re on your road back to wellness!
PS You might want to search past posts on the topic of useful supplements for ILD. There are some excellent ones (e.g. n-acetylcysteine, curcumin, ALA, glutathione, etc) and various classes of antibiotics have also been studied and found to be helpful for modulating pulmonary fibrosis.
What Antibiotics Have Been Used To Treat Scleroderma and Its Various Forms?
Just a fellow patient suggestion, but experienced Lyme Literate MDs tend to use an array of complementary antibiotic protocols and so you might find this type of doc to be more appropo in your situation.
Mssada33, you may be interested to read this Huff Post interview of a top LLMD, particularly the comments about autoimmunity as it relates to infections and Lyme:
Where IDSA Guidelines Fail, Leading Lyme Doctor Succeeds (Part II)
Maz,
Thank you so much for your reply. I would really like the list of the “most experienced” LLMD’s.It’s so hard to know what is going on at this point. I have symptoms of RA (swelling and knee pain), the high marker for SD and a history of a tick bite back in 2016. I’m still waiting on my blood work to come back which may give some indication of RA and possible ILD. I also still have to complete my CT of the chest this week. I’m hoping for the best. Each morning I wake up feeling worse and worse though. Every morning I awake with stiff and swollen fingers and it is becoming increasingly harder to walk the neighborhood each evening with my daughter, as my knee pain is becoming unbearable.
Perhaps it would be a good idea to see a LLMD first and then go from there.
Hang in there, Mssada33! I have sent the US “most experienced” LLMD list to you in a private message. You should get an automated notification of this message you can click on, which will take you directly to the PM if you are logged in. Otherwise, you can always access PMs by clicking where it says, “Hello Mssada33” on this page and then selecting “Messages” and “Inbox.”
In one respect (and the upside, if there is one to these diseases) is that you made the connection to an infectious disease! This and finding a doc can be half the battle won! Also, you are young and very early in your disease presentation (before too much damage has been done), so there is every hope you can get well onto your road back very soon! Keep the faith and, when you can’t, we here will do that for you.
Thank you so much for all the information. It is the only thing that still keeps me grounded.
I saw my PCP today who is a young D.O. I had asked her if she could get me into see another specialist a bit sooner for a second opinion but she said only if my CT comes back with lung involvement! I told her about the swelling in my hands each morning and the difficulty of bending my fingers and she said perhaps I have carpel tunnel syndrome. It is just insulting at this point after complaining of joint pain since Feb, and having a history of lyme. I really need a new PCP who will actually take me seriously. I will not return to her. I’m very frustrated because I have all of these symptoms (swelling of hands, joint pain, a positive SCL -70 (8) increased stiffness in my fingers) but still no diagnosis. I feel like it has to get so much worse for any doctor to take me seriously. What does it take to get a diagnosis of RA or SD? I am going for my chest CT tomorrow and am praying that it is ok. I have a decrease in my DLCO on my PFT so my current specialist is worried about early ILD.
Please keep us posted. Your story is identical to my 11 year old daughter in February she also tested positive with the score of 8. Her Echo and pulmonary function test was fine. Her doctor did not want to diagnose her with scleroderma but did prescribe her conventional meds. I’m starting to wonder if she has lyme disease as well
I have Lyme induced Scleroderma–in remission following aggressive Lyme treatment, diet, alternative medicine. You are on the right path–just keep searching! Good luck
kateSystemic 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
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