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I was on another website (support group for SD) and the question came up if anyone who has treated for both Lyme and SD has been able to remain in remission if they discontinued the minocycline and for how long they have been in remission.
I have both Lyme and SD, but have NO intention of discontinuing Mino, just inquiring to see if there is anyone who has been able to do this. Thanks!
I do not know anyone with the Lyme/SD Combo that has discontinued antibiotics, but I have spoken with/met several people who have discontinued minocin after full and complete long term remission. Several of them have had a relapse of SD.
Dr. F in Riverside advises against an SD patient EVER going off the antibiotics completely. He told us that if you do and the SD comes back, it is often difficult or impossible to get back under control. He was VERY serious about this opinion. However, at our last appointment with him, he did agree that Jess could cut back significantly, she is now on a “mait. dose” of 100mg Minocin, once per day, MWF. So she decreased from 1,400 mg of Minocin, down to 300 mg. She remains stable in her remission.
Most of the SD patients I have encountered stay on the antibiotics for life, just possibly at a somewhat reduced dose.
That's my 2 bits.
Cheryl
Cheryl,
So glad to learn that Jess continues to do well! I can with no problem continue minocycline for the rest of my life too–it is good news to hear that Jess is taking a dose only 3 days per week. How long has Jess been on the MWF 100mg dose?
Cheryl,
Ryan has been on AP since May of 2009. He started lyme treatment in Dec of 2009 and now he is on mino with flagyl until we go to see Dr. C. in two weeks. Also, in June we went and saw Dr. S in Iowa and he had 5 days of Clindy IV's. His hands seem to be a little better but I found 2 new patches on the back of his knee. I am really scared about this because I thought after this much time, he would not get any new SD patches. Did Jess ever experience any of this?
Sue — Ryan's Mom
[user=2198]vonni[/user] wrote:
Cheryl,
So glad to learn that Jess continues to do well! I can with no problem continue minocycline for the rest of my life too–it is good news to hear that Jess is taking a dose only 3 days per week. How long has Jess been on the MWF 100mg dose?
Dr. F advised her to go down to the MWF 100 mg dose in May 2009, which is the last ime she saw him.
In all truthfullness, she does take other antibiotics too, she cycles through various antibiotics including zith, amoxy, and flagyl. Never consistantly, just intermittantly. The addition of the other antibiotics generally coincides with the onset of a slight cold but I do believe that it is helpful in keeping the SD away.
Cheryl
[user=1274]luvmywonderfulkids[/user] wrote:
Cheryl,
Ryan has been on AP since May of 2009. He started lyme treatment in Dec of 2009 and now he is on mino with flagyl until we go to see Dr. C. in two weeks. Also, in June we went and saw Dr. S in Iowa and he had 5 days of Clindy IV's. His hands seem to be a little better but I found 2 new patches on the back of his knee. I am really scared about this because I thought after this much time, he would not get any new SD patches. Did Jess ever experience any of this?
Sue — Ryan's Mom
Sue:
Jess never really had SD patches, her skin thickening and tightness was never very pronounced, infact, I never really “saw” it, but the rheumy said he “saw” it (I am not completely convinced because this rheumy also thought he saw that my face was showing some SD type tightening around my lips, maybe, just maybe, I have relatively small lips and, hum, go figure, my daughter looks like me, not all small lips are SD).
I am sorry that Ryan is still cropping up with new symptoms, I know how stressful that must be for you and Dan. It is clear that there is still more to discover in terms of what Ryan needs to really lick this thing. You will find it! There are many alternatives, you just have to pace yourself and choose wisely so you are not chasing too many things at once. I know that all of this takes so much energy and mental focus, I hope that you and your family are able to put the struggle aside and enjoy life. Honestly, if Jess' struggle had continued, I don't think I could have, I was a WRECK! Do what I say, not what I did (which was worry myself sick all the time.)
Cheryl
my SD was mild until i got on antibiotics….once i started it flared it up and in 4 months my arms were so tight i cant straighten them and my hands are all crooked BUT on a good note they say u get worse before better…thats the truth! now i have been on ivs for a few months i have noticed my ulcers getting better and the skin on my face is softening….and the pain is not as intense so im hoping to be on the down side of the hill! it is a mental struggle all the time to deal with this awful disease! it has disfigured me but im praying for full restoration and it is coming! i feel for all you out there struggling with this too! but on the upside atleast there is a treatment that will save our lives and during the years of recovering keep persevering and have faith…your miracle will come!
Thank you so much for replying — the real strange thing is Ryan feels great! No more stomach problems (probiotics fixed all of that) — even his claw-like hands do not bother him (unless someone tries to straighten them) — I know he is getting better but after 1.5 years on AP, I was really surprised to find new patches — maybe they are more related to lyme than to the SD — hopefully Dr. C will have some answers next week. We are also starting the clindy 900 on and off every 2 weeks — yippee!
Sue — Ryan's Mom
Sara and Sue,
All I can tell you is that SD is the most bizarre disease and seems to present differently in everyone, which is one reason it is so difficult to diagnose.
Sara, whatever you’re doing, keep doing it! 😉 What a relief to hear you’re now seeing some progress because your SD had really taken hold and was going to be tough to reverse. I’m really happy (and relieved) for you.
Sue, sorry Ryan has some new patches…….who knows what they are. If you asked 10 doctors you may get 10 different answers. Trust your gut and if Ryan says he’s feeling better it’s because he IS getting better. I’m doing well and still have symptoms come and go…….just enough to remind me it ain’t over and to keep up with the maintenance to stay ahead of the game.
Take care…..kim
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