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My doctor agreed to let me try AP. She isn’t a rheumatologist but just my regular doc. Does it matter if I start on minocycline or doxycycline? Should I start with an IV? Has anyone with scl70 antibodies had succes ? And how do we know AP isn’t just a placebo effect?
Hello & welcome:
My daughter has limited Systemic Scleroderma and has anti-centromere, not Scl70, but as a volunteer for RBF for almost 12 years I have interacted with many scleroderma patients who recovered using AP therapy who had the scl70 positive blood test.
To answer your other questions:
If it were me, I would choose minocycline. That is just because this is the drug that now thousands of SD patients have taken and have recovered. I can’t think of a reason one would choose doxy over Mino, unless you have a specific contraindication.
Regarding IV therapy, I would make that decision based on several factors:
How sick/progressed are you?
How much time can you put into the therapy right now?
How much will it cost?Basically, the IV therapy is the clearest way to get a jumpstart, to kick SD to the curb. But, if your are very early in the disease progression, then it may not be necessary and may not be worth the cost and hassle. It is a personal decision that each person must make.
Regarding whether AP is a placebo effect, I hope by now you have read the book, Scleroderma, the proven therapy… I highly suggest you do. Also, use this forum to search for posts from SD patients. These are real people who have posted their stories of various degrees of recovery. I don’t really have an answer to this question except you have to do the reading yourself and decide for yourself if this treatment is valid. If you are asking how do we know whether AP is merely a placebo effect, it seems as though you haven’t educated yourself nearly enough to be undertaking this treatment with your own inexperienced doctor who is willing to prescribe but unlikely able to navigate the ins and outs and ups and downs to this treatment option. I am not suggesting that you should not do it, but I am suggesting that you need to do a lot more information gathering if you are still of the impression that AP for SD may possibly be a placebo effect.
Best~
Cheryl
Hi Oregonian,
Glad you found this forum and you just got the best answer from a very experienced person who has supported thousands thru this early decision-making process. My only additional suggestion would be to read through the SD research on this website and the Stories sections, both accessible by clicking the tabs at the top of this page.
Unfortunately, there is a lot of misinformation being purveyed on other forums about AP. Yes, it’s a very slow therapy and the first year on treatment is mainly about stopping the SD freight train, after which time the benefits of AP become evident for the large majority of SDers whether sero-positive or sero-negative. If supportive meds need to be taken, these can be added, but the goal is to gradually revert to the safer medication, minocycline (for life) only. There are Road Backers who have used AP for 30+ years with no trouble, if appropriate gut supportive measures (e.g., good quality, broad spectrum probiotics) are used concomitantly.
Good luck in your researches and am sure it won’t be long till Richie and other old timers with SD pop by to offer words of encouragement by their living examples! You’ll also find Richard’s Story in the stories section.
Hi First of all I never address the placebo effect -cause its bullshit –sorry everyone –most doctors cant offer anything to fight the disease -so they more or less claim minocycline was “lucky “–I know hundred of people who got better from diffuse scleroderma using minocycline and my retired doctor must have helped thousands !!!—I dismiss many tests including scl70 and anti-centromere –I had a full blown case of diffuse scleroderma with all blood work normal always –the only test that showed anything is the nail fold capillary test –Its the symptoms presented -you will also know things are improving when symptoms improve –can take quite awhile but I now am in complete remission for many years !!with no symptoms at all –good luck —richie
With diffuse scleroderma -you will also need supporting meds from your regular doctor –to strengthen kidneys –help Raynauds –help reflux -keep BP low
Hi Old friend Cheryl —Hope all is well –Isnt Jess a doctor ? you must be proud !!!!!! My granddaughter swam for four years for Columbia and now on to law school —Best always –richie
Yes, Jess is an Infectious Disease doctor at Stanford! Your granddaughter was 12 I think when we “met” (virtually) here! You must be so proud!
Hi Oregonian;
I think I started AP around the same time as Ricie.!9 years this Nov.Like him I had a very bad case.I felt much less pain and brain fog in a few months.By year 2 I had my body back to norma and the slight lung fibrosis in 1 lung was gone.It did take nearly 4 years to get my clawed hands back to full finger dexterity.
I am now near the end of getting my veterinary degree.I have been able to accumulate all kinds of information through med school but it was all in French so I went digging around for English equivalents.Much info in Pub Med publications but of course regular doctors never look twice at it.You will be surprised at how many ways minocin and zithromax work.I wrote this up about 2 years ago but have not had time to see if there is anything new.After you read all these links should be ablle to see why it works so well.Hi Mandp;
Mino and or other antibiotics certainly is the reason you are doing well.Here are a few links that will explain why/how.Mino/doxy/clindamycin/Zithromax will work IF you have an infectious cause,many do but your average doctors certainly will not take the time to find out.If you have an infection you will know because you will get a Herxheimer’s reaction.Everyone else will react well to just mino/doxy because it controls the Interlukins and Transfer Growth Factor -1b
Links on Interlukins involved in SD… our worst are 1,mostly 6 and 8 but 10 is your friendPrimer on SD and how Mino works as a very good anti inflammatory,not as an antibiotic.New drug hopefully to be here soon called Resunab will be a super duper anti inflammatory ,an artificial cannabinoid .It is becoming clearer every day that inflammation is the likely cause of all disease and getting it down is of most importance to feeling better.This is one of the reasons that good diet is so important.
Those of you that have a good science background will be able to understand all these links.Others will have to read slowly more than once but you will get the gist of it.I have years of medical training but still have to shake out my brain after reading too manyhttps://www.sclero.org/scleroderma/causes/interleukins/a-to-z.html NO1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226076/ No1https://www.news-medical.net/health/What-Does-Interleukin-6-Do.aspx NO1
https://www.ncbi.nlm.nih.gov/pubmed/8315568 NO1https://www.ncbi.nlm.nih.gov/pmc/articles/PMC408350/ No1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No2https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2787259/ No3
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No4
http://www.sciencedirect.com/science/article/pii/S0022202X15425217 NO5 Transfer growth factor/tissue factor
http://www.pnas.org/content/93/24/14014.short this refers to NO4
http://thorax.bmj.com/content/early/2011/10/24/thoraxjnl-2011-200499.short refer to NO4
http://europepmc.org/abstract/med/23870534 refers to NO1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/ refer to NO1
https://www.degruyter.com/downloadpdf/j/infl.2013.1.issue-1/infl-2013-0002/ infl-2013-0002.pdfhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167643/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785020/
MINO/DOXYhttps://www.hindawi.com/journals/mi/2015/329418/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/
https://www.ncbi.nlm.nih.gov/pubmed/22306153
http://medcraveonline.com/JNSK/JNSK-02-00073.php
http://journals.lww.com/theneurologist/Abstract/2017/07000/Antineuroinflamm ation_of_Minocycline_in_Stroke.4.aspx
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548869/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/
INFLAMATION is inflammation regardless of where it is,brain,finger,eyes etcThank you all. So I have not been officially diagnosedbut I have tested positive for scl70 antibodies for 4 years. My symptoms started after I went through a very stressful year with poor eating habits and poor sleep. My symptoms are atypical and thats why they wont diagnose me and just say I have a false positive. Ever since I tested positive I have been doing my research and have looked into AP from the beginning but since I dont have a diagnosis its been hard getting a doctor to treat me. I did see Dr Franco 2 years ago and he did a lit of tests and at that time my scl70 was negative and I did test positive for Mycoplasma P. Dr F. said I didnt have scleroderma cause lack of scleroderma symptoms and negative test. My Ana test was positive though. Since then I have tested positive scl70 2 more times. My primary care doc is wonderful and she has let me try LDN and also agreed to try AP. So I’m not really sure if I should do the IV or not.
RBFV Note: Tbis post was edited to remove AP doc’s surname as per forum guidelines found in the Announcement posts above. Thank you for understanding.
Hi The doctor you went to 2 years ago is definitely one of the very best in treating scleroderma Successfully—20 years ago imo there were three giants -one in the East one in the midwest and one in the west –I went to the East Coast doctor —-right now only the doctor in the WEst is seeing new patients —-Some folks feel kick starting the treatment with ivs is a good ides –the Harvard doctor did not use ivs –instead used minocycline at the rate of 200 mg daily every day –the midwest doctor believed in ivs to start and then pulse dosing the minocycline MWF —-I am not certain what the west coast doctor uses -I think he starts with IVS —–The bottom line is many many people got better using either approach —Its really a coin flip –Sounds like things are early -which is certainly to your benefit !!!!
Hey Oregon –exactLY what are atypical symptoms –exactly what are your symptoms –if its just scl70 and nothing else for 4 years -whats your problem –your placebo remark comes straight from folks who attempt to cast doubt on the efficacy of antibiotic –Coming from New York I always have suspicions as to real motive !!!!
Hi
I would be interested to know what your symptoms are also?? I have diffuse, Lyme, Myco P since 2010. It is all in remission . I did more aggressive antibiotics and IV due to Lyme but mino has always been part of my treatment plan. Also lots of changes to diet, supplements and alternative therapies to support my system. I remain on LDN and maintenance dose of mino and will for life. I had to stop mino for a month to repeat my Lyme test and in 5 weeks my lyme test changed from 1 negative, to 2 borderline–proof to me that mino continues to work and I need to stay on it for life. While I believe the mind is incredibly powerful, it would never cross my mind that AP could be a placebo effect. Good luck to you.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, Cawww thank you Cheryl. Yes all good here. I am busy– living with my elderly mom and taking care of her and her house. I try to help on so many scleroderma and lyme sites– pay it forward. I feel I owe my life to roadback. Thanks for thinking of me
cheers
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, CMy goodness Cheryl you must be so proud of Jess. I remember when Mike & I first came here after his diagnosis and he spoke with you on the phone for a very long time. You gave us so much hope.
Mike is doing incredible with nothing showing on his bloodwork but his fingers are still contradicted and always will be but being 10 years out (after being given 5 years) we will be forever grateful to roadback & ap.
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