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Hello everyone, it’s been a little over two months since I last posted. I have a history of Lyme and tested positive for Scl-70 back in March.I’m a 35 year old female. At that time I saw a SD specialist who did a capillary test and told me all looked well and that I most likely just had the antibody. He did test all my vital organs and everything came back well. Since then I have developed swelling in my hands and my fingers seem to get stiffer and stiffer each day. First it was just in one hand and now it is in both. I also noticed that i’m starting to develop what looks to be raynauds. My finger tips are not fully purple but seem to be on their way there and I often feel like my finger tips are on fire! I have seen two SD specialists and both have told me i’m the healthiest patient they have seen. All my blood works seems to be fine. Thanks to this forum, I was introduced to a doctor who is willing to try Mino with me. He said he has treated one patient in the past with SD and it was very successful. I’m not sure how much he knows about the AP protocol in helping me at these early stages. Sometimes I wonder if I should just let it go a bit further so I can get a diagnosis and begin a full AP protocol with an experienced doc but I also have heard the longer you let it go the harder it is to correct. So I guess to sum up i have these three questions:
1) Did some of you have this same experience with early symptoms? (swollen fingers in the morning, stiffness in one hand and this feeling of burning fingers tips?
2) What articles would be most useful in educating my doctor on the AP protoco?
3) Is there any other testing I can do outside of the standard to know if SD is in effect?Hi There;
Testing for SD is so unreliable.All my tests were negative except for slightly low red and white blood count.SD is primarily diagnosed by symptoms and if my doctor had relied on tests I would be dead.I had stiffness in all joints,gut and throat problems,a white furry tongue and could not taste anything,weird smell such as …the cat’s litter box smelled of cucumbers,tendon friction rubs and hardening skin from head to toe .According to tests I was very healthy.Thank God my doctor did not believe the tests.Lynne, thank you for your reply. These testimonials and advice certainly help to make things a bit less scary and provide hope as I try to maintain my sanity as a mother of two small girls, a professor and wife. The demands really never stop even though we become sick! I recently started 100mg of Minocylin (torrent brand) twice a day. I have only been taking it for about four days but I feel like my symptoms are getting a bit worse. I wonder how long it took for others before they began to see any result. I’m beginning to see my fingers take on a different shape (widening around the knuckles) and am not experiencing a bit of throat problems along with some neuropathy. I know how critical it is to keep on a good probiotic as well and wonder if has some suggestions on good ones they have found. Advice and hope is greatly appreciated.
The very best thing you can do is to start AP before this disease really sets in.I also had Lyme and it has a very different protocol.It can cause or if you are lucky it can just mimic SD or a dozen different diseases.What did you do for your Lyme? It can be so dibilitating that it makes SD look good.Feeling worse is a good sighn that the antibiotic is fighting something so don’t panic.
Lynn,
I did four weeks of doxy for my Lyme. After my lyme is when I really began my decline in health. Currently, I’m hoping the 100 mg twice daily will help but feel like I’m experiencing a new symptom each day. I will try not to panic and give it some time. I’ve been searching the list Maz sent me for some experienced docs to get myself to incase I need additional treatment.If I was in your shoes I would look for an LLMD (lyme literate MD) he/she would be able to prescribe our usual AP meds but you may still have Lyme unless you caught it within the first couple of months.I only found out I have it when I met my AP doctor as she recognized it right away.She had been bed bound for almost 2 years with Lyme.I had to use several antibiotics and a couple herbals and did well.I really don’t think I got rid of it completely but just taking Doxy every couple days holds my remission and keeps my life normal.I was only able to go on a maintenence dose after 14 years on full protocol for SD and full protocol for Lyme for 4 years.
Lynne, Are you from the east coast? Do you recommend a doc on the East Coast. I have the lists from Maz, just not sure who to call first.
I live in Canada ,halfway between Ottawa and Montreal.My AP doctor is no longer practicing so my family doctor just prescribes what I want as he knows that I know way more than him.Just pure luck that he agrred to do so.
HI
I have scleroderma which I later found to be caused by Lyme and myco p. My first symptoms were fatigue and muscle weakness but very vague so I dismissed it until I got sudden carpal tunnel and raynauds- in July, and then quite a few months later sudden swelling in my hands and feet and rapid skin involvement. I was diagnosed with scleroderma and started AP, then a few months later more aggressive Lyme treatment. I am all in remission now. Don’t wait to start treatment, might take six months or so to see change and yes you might feel worse before better. Make sure to do LOTS of detox and probiotics and practice patience and faith in this process. Best healing to you
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, CKater, thank you for your reply. I also experienced muscle weakness and fatigue and was dismissed. Since I just had a baby my doctor contributed it to postpartum and tried to put me on an anti-depressent. Like you I now have swelling in my hands, the development of raynauds and stiff fingers. I have one appointment set with a LLMD for October 2nd. I have also started taking Minocyclin 100 mg. twice daily. I’m curious what doctor you saw and what specifically you would recommend for detox.
I did not have a diagnosis and started AP after seeing a Lyme Dr. My initial symptoms included burning fingertips and carpal tunnel which quickly spiraled into sever insomnia, neuropathy, and dry mouth and eyes. Two years after the onset of symptoms and 18 months after starting treatment, I am doing fantastic! With the exception of light neuropathy a few times a month, I am 100% back to normal. I cannot thank this crew-particularly Maz and Lynne G SD enough! They, in combination with my Lyme Dr, changed the progression of my life.
Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi
Kat0605 your symptoms sound identical to mine. I don’t have dry mouth and eyes but all other symptoms you mentioned. I recently got myself to one of the best Lyme docs on the East coast and have a plan for treatment now. I am keeping Mino at the core and treating the lyme with additional antibiotics. I have been on Minocycline for exactly one month now. I know it is probably way too early to see improvement but I hope I can see it soon. Like my doctor said, pills, patience and persistence!
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