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Hi Everyone,
It seems like the BB has been pretty quiet on the SD side. So I thought it would be nice if as many of us SD folks as possible could provide a comment or two about how you are doing and hopefully how AP has helped you.
Thanks in advance!
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi Randy! Great idea on the end of year encouragement.
3 years ago at Thanksgiving, I remember being slathered in BenGay and smelling just lovely at the dinner table. My joints were stiff as old hinges and when I dropped my napkin at the dinner table, I couldn't bend to pick it up. I also could barely cut food. This year, I helped cook and cleaned up after our dinner of 24!
Also, this year, the day after Thanksgiving, I dug holes for and planted 6 bushes (ok, I had some help) and knelt on the ground to plant 80 plugs of groundcover and then mulched.
I'd say AP *is* definitely working for me and I have MUCH for which to be thankful. Richie, Lynne, A Friend and many others were my encouragement in those early dark days. Thank YOU!!!!!
Randy,
This thread is a great idea! 🙂
Tomorrow marks exactly 4 months (17 weeks ) since I started AP.
Before I started AP, I had Carpal Tunnel in both hands: It was bad in the right hand / arm, and had just begun in the left. it was hurting ALL the time, not just while typing at the computer: even when I wasnt using my hand, it was burning, tingling, going numb, etc. and it would also wake me up at night, and the symptoms were quickly worsening…
About 6 weeks into AP, I realized the Carpal Tunnel had completely disappeared. To be honest, I hadnt even noticed that it went away; I was reading a post here from somebody else who had Carpal Tunnel, and I thought to myself “Well, I can relate to that because I have it too… ” and then I had to stop and ask myself “Hey.. yeah.. I have it.. Um, No.. wait.. I havent felt that pain in a while.. whoa.. come to think of it, its been weeks.. hold on.. where did my Carpal Tunnel go??””
It had been such a daily issue with me that I was beginning to think about surgery, and then one day, it was just gone. I wasnt excpecting the Mino to help because I had no idea the Mino COULD help Carpal Tunnel, so I wasnt hoping for or looking for any improvement, and as I said, I didnt even realize it was gone until I read a post about it on the board.
The second thing I have noticed is my level of fatigue has DEFINITELY improved; last year at this time, I helped my sister make Christmas Wreaths, and we made about 20.. it took about 5 hours ( its harder work than you think! ) and by the time we were done, I was wiped out. no other way to explain it… I was just at my sisters house again this past Saturday, and again we made Christmas Wreaths.. another 20.. and again, it took about 5 hours… when we were done, I was a bit tired, but not totally drained like I was last year. Same scenario with Thanksgiving dinner: I cooked part of the dinner and that took about 5 hours, jumping up and down, checking the oven, chopping, cooking stuff on the stove, etc. and then I had to shower up and drive across town for dinner, and I wasnt totally drained.. this might not sound like a big deal, but just a few months ago, I could only tolerate doing errands / chores ( like cooking or grocery shopping, etc. ) for about 2 hours and that would be it for the day, I just didnt have the energy for anything else, but now I am finding that I can go almost 3 times as long and not be as tired as I used to be. After I made my share of the Thanksgiving dinner, I remember saying to my fiance “Wow.. Im not that tired! I feel ok!” and I was pretty pleased about that!
The third thing I have noticed is the constant dizziness / “tippy” feeling that I have had in the past is pretty much gone.. its no longer a constant companion.
These may seem like small accomplishments, but they mean a lot to me. Not only that, but when you think about these things in light of the fact that I am not yet on the full dose of Minocin, it makes the improvements seem even more inmpressive. ( My AP doc started me slow: 50 mg, once per day, M-W-F.. then he increased it to 50 mg, TWICE a day, M-W-F… now I am up to 50 mg, twice a day, 7 days a week… when I go back to see him in 2 & 1/2 weeks, I expect him to increase me to the full dose of 100 mg, twice a day, 7 days a week )
I am definitely looking forward to my next increase in Mino, and I cant wait to be back and posting about the other improvements I will surely be seeing.:D
I cannot thank the people of this board enough for all of the encouragement and support that I have been given… although I am on the “Road Back”, sometimes the road has dark spots, or lonely spots, or spots where you dont know whats coming around the next corner and you fear the unknown, but I know all I have to do is call out, and somebody who has traveled the road before me, or who is a little further on the journey, will be there to help me.
I have so much to be thankful for!
I cant wait to read all of the replies in this thread!
Connie
Wonderful idea Randy. It has been so long since I really thought seriously about the SD that I HAD.Well,I still have it and know it if I go for many days without taking any mino.I start to get that achy feeling in my hands and that reminds me to take a dose or two and then I can go a few more days without .
AP did not help much at the beginning.The extreme tiredness and gerd were the first things to go,somewhere around the 8 month mark.I did not have an AP doctor so I was winging it with my family doc.Things stayed pretty well mummified for the first 5 years or so and it was most depressing to see so many others getting quite well.
I found a great holistic/AP doctor who just knew that I was not responding as something else was at the root of my SD.She had me tested for Celiac,food sensitivities and high vit D 1,25 .She was right on the money.Celiac was quite high,food sensitivities to anything “cow”,citrus,nighshades,anything from sugar cane,lamb,and a few others that I can't remember at the moment.Mt D1,25 was 3 times too high although the regular D was low.so I had to drop eggs and seafood also.I thought I would die of famine but survived on chicken,porc a couple fruit and most veggies.It took over a year to clear the damage from these things and within 18 months after I was in total remission.Now I can't even remember when I took my last asperin.
I run my own orchid greenhouse with over 16000 plants that have to be repotted every year in coconut bark,it wears the skin off of me but my fingers have all the dexterity they used to have.My work days are never less than 15 hours and often more and I am back teaching ballet..I know I can outwork/outrun my girls who are 40 and 37.Not bad for an old girl of almost 64.Now,all I wish for Christmas is to have a little of that collagen back to fill in some wrinkles as I scare myself when I look in the miror. heheheGreat idea for a check-in, Randy. I feel such a strong connection to everyone with this horrid disease, and for me to see so many people get better using this protocol is just too cool. :blush:
After 4 years of working my tail off to get better, I AM better! Nine months with no abx surely qualifies for the big R. At first I was too superstitious to let the word “remission” come out of my mouth for fear of jinxing something, but no longer, (the same reason I've been too spooked to write my testimonial). During this time, I've experienced all the stressors that could cause relapse and weathered them all so I'm doing OK.[/size”>[/color]
Am I 100% back to where I was? No, more like 90-95% (depending on how much fun I've just had) :roll-laugh:. There is still residual stuff to clean up; i.e. hormones, thyroid/adrenal/pituitary and the like, but all things that should be fixable. I may get hit by a bus tomorrow, but no longer do I worry about dying from SD…….that cloud has lifted.
My Raynaud's is almost totally gone, my hypercoagulation greatly improved, and my many areas of thickened skin almost normal. My hands have some permanent joint damage and deformities, but fully functional. Carpal tunnel gone, facial palsey gone, skin texture almost normal, hairless arms and legs now have peach-fuzz which is just fine with me.
You know, it's funny when I see a new doctor who is doubting my story of getting better from SD using abx, they always grab my hands for the “cuticle check”. As soon as they see my shiny cuticles, they take note and may throw me a bone saying something like, “well, they've heard of a few people it's worked for.” :headbang::headbang::headbang: ………..serenity now, serenity now!
Take care…….kim
Since Dec 2008, I am on 100 mg of doxy/day for RA and scleroderma. ( I had to stop minocin last summer after 18 months for elevated liver enzymes)
Currently my hands are like claws.
I have been on a downhill slide for the last 6 months and need suggestions.
This summer I did another week of IVs and really hoped they would help give me a big boost but they did not. I was extremely fatigued for over 3 weeks after the treatments this year, this was a big change as last year I had no effect- good or bad. I started monthly IVs -one in Oct and one in Nov. and they dont seem to give me improvement. I am getting stiffer every day and it is painful everywhere. I am still extremely fatigued. My knees were fine and now in the last month they are painful and it hurts to get up and down and to walk. This is scary.
I did test positive for celiac but really havent done much about changing my diet until this week. I am off the gluten and dairy now and will see how that helps.
Any other ideas gang?
Should I try more frequent IVs? Should I begin Zithromax in the mix?
My last liver test on Oct 20 -ALT was 95 and AST was 107.
I am so grateful for all of your information and inspiration. It truly gives me hope
that I too can get better. Thank you all for being here!
Pam
RA/SD-diagnosed Dec 2005
began minocin July 2006,began doxy July 2008, had to decrease to 100mg in Dec 08
problems with high liver enzymes[user=121]pam[/user] wrote:
Since Dec 2008, I am on 100 mg of doxy/day for RA and scleroderma. ( I had to stop minocin last summer after 18 months for elevated liver enzymes)
….. My knees were fine and now in the last month they are painful and it hurts to get up and down and to walk.Pam,
Have you tried Milk Thistle / Silymarin for you liver enzymes? Have you also looked into NAC? I am taking both for my liver and kidneys. Perhaps if these sups help lower your enzymes you can go back to 100 mg twice daily of minocin….
I am so sorry to hear the recent problems. I know for me that exercising all my joints and stretching is critical for feeling better or I stiffen up. Doing very mild squats (e.g., wall squats using a ball) is immediately excellent for my knees and really helps me for stairs and walking.
Please be more specific about your IV's these last 2 months.
Also, are you taking any NSAIDs? I take Diclofenac twice daily and I am incredibly stiff without it.
Ref fatigue, how are you sleeping?
Before you switched to 100mg Doxy daily, how did your 2 years of 100mg mino twice daily (I assume) from July 2006 to July 2008 help you?
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Pam,
You might have just figured this out for yourself. Healing your gut is paramount in getting well. You have to be 100% committed to no gluten which is not easy because it's hidden everywhere…….even things like licking a stamp, or gluten could be hiding in your vitamins, etc.
Sounds like you for sure need to get your blood moving and the easiest way to do that is with enzymes (like Neprinol) to thin your blood and sweating in a sauna. This will help you detox and drain your lymph system. Your body is designed to create a fever to fight infection and the sauna does the same thing so it's a win-win.
Diet will play a role in inflammation and cutting out complex cards, primarily sugars or things that turn into sugar, will help.
This is not easy and it's never quick enough, but you CAN turn this around, Pam. 😉
Take care…….kim
[user=223]Randy[/user] wrote:
Hi Everyone,
It seems like the BB has been pretty quiet on the SD side. So I thought it would be nice if as many of us SD folks as possible could provide a comment or two about how you are doing and hopefully how AP has helped you.
Randy,
Oh well, I have not finished my bucket list yet. So I am still kicking.
After being on minocyclin for a year, I developed some allergy reaction. Coughing is one of them, rash is another. I also have diarrhea…. so I decided to wean it off. After a month without it, the pain level was still the same. My ESR has been pretty much at 40 with some inflammation in my eyes. My fingers are still swelling like sausages. I still can breath okay. Walking is getting harder on me. The bottom of my feet are very tender. I also have some swelling in my legs, I can feel.
So I am not taking any minocyclin right now. I am on zithromax for a week to treat my sinus problem. It's getting out of control right now.
However I am trying to figure out if I have indeed got Lyme Disease. I also want to see if I have Celiac disease due to mild diarrhea problem.
Sorry no positive results yet.
JB
Hey Randy. Good and timely topic. I'm doing well, closing in on three years of AP. The change has been remarkable. When I find myself tired after a day of electrical work and of stairs and many trips up and down a step ladder and I am feeling frustrated then I think back to three years ago. I remember the misery, pain, crushing fatigue, etc. Thinking back to that time makes me feel a lot better really quickly. I think that at this point if I had an office type job (or I was younger :() I would not really notice the effects of SD very much at all. I am thankful to all for the support I have received here and thankful I found my way to AP relatively quickly after my SD became active. While things are not perfect I have made huge progress and am happy to have so much of my life back. I suppose the largest change lately is mental in that I find I am no longer totally defined by SD as I was for a while. Make no mistake the SD is still a large factor but not the defining one. The other mental change I experienced in the past year is that I found my brain was holding me back some. Physically I was improving but my head was telling me to hold back remembering the previous cost of doing things that were beyond my earlier capabilities I guess. I sort of had to push through and try things, usually I found I could be successful.
I am so much better that I no longer think about this disease, I just think about living. The stiffness and pain in my legs/feet/hands is much better and the carpal tunnel does not keep me awake any longer. I just got a sauna and have noticed it seems to help as well. Raynaud's is much better and the fatigue is better. I am now able to exercise and walk again. Feels good to be alive without worries about what will be happening to my body down the road. Thank you, Thank you RB and all those who take the time to encourage and get the word out!
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
Pam,
One issue you might need to look into is Babesia. None of the antibiotics will really touch it and if it goes untreated it can prevent you from making any recovery. Many scleroderma patients seem to do really well on just the minocin so when I see someone who doesn't it's a red flag to look into something else. (I know it worked some while you were able to take it but it looks like the Clindamycin IVs aren't working either) Flagyl has some action against Babesia although it can be a little hard on the liver. I second Randy's suggestion to try milk thistle and NAC to see if they don't help you to tolerate the minocin again and other meds.
Thank you Randy. Holidays are such a benchmark. Looking back I remember each of the last four, and it really puts things in perspective — what a difference the last four and a half months have made!
Nearly four years to the day I noticed my first SD symptom, I started on abx, July 17, 2009. I didn't have a lot of involvement compared to others, but am starting to realize that I had all the symptoms that this was about to change dramatically.
Since July, my fingers are not hard, the yellowish cast is going away, I can bend them, and they don't look like sausages anymore — neither do my arms. My hands are soft, and wrinkley — and I love it. I can wear my old shoes, and my toes crack again when I get up in the morning as I step off the bed, and I can feel that the circulation in my legs is changing — I feel that rush of energy in them again. Some hair has started growing back, that nice downey hair on my hands and fingers — although my wine reduction sauce flambeed on me Thanksgiving and some of it is gone! My face looks like me again. I have facial expressions which I talk. I can think past the middle of a sentence, remember why I'm standing in the middle of the garage, and hold a decent conversation again. I retain what I read… My neck and shoulders are almost functioning again, and they are getting stronger every day. The hyperpigmentation in my skin is gone, along with the brown spots.
For the first time in four years, I cooked all day Wednesday, and Thursday, and it was an absolute joy!!!!! I got tired toward the end, but it didn't put me in bed, just sat me down.
Cheryl, Kim and Maz, Thank you. You've changed my life with your strength, wisdom and support. I don't have your gifts, but I'm trying to pay it forward with the gifts I do have. Thanks also to Rachel my PT, without whose support I never would have been tested, and Dr. F who is just amazing.
Blessings of the Season…
This time of years really makes me think back and we are so blessed to have found the roadback and AP.
Last March Mike was unable to … pick up a book and read or even pick up a piece of paper without terrible pain in his fingers, playing the piano, well there was no more of listening to him play my favorites and forget about buttons, snaps, and zippers. No more working in the yard and many more things that used his hands. They looked like catcher's mitts and the pain and sensitivity were indescribable. We felt like we had been handed a death sentence and according to our original rheumy we were.
Along came the Roadback and AP that was started in April, and here it is December…reading a book….no problem there…playing the piano…..just one note short of an ocatave and buttons, zippers, etc. My man dresses himself again. His hands are getting softer and softer and we know it is only a matter of time until he will have full use. We have been blessed that there was no organ involvement prior to our discovery of AP.
Mike has been blessed to have the opportunity to speak with others just starting on the journey of AP and given much encouragement.
May all of our friends here stay blessed and healthy. Have a safe and happy holiday season.
Lana and Mike
I also would like to say that I am 100% better, I can move around with out pain, the swelling is pretty much gone from my hands and feet, I am not tired like I use to be, I don't have to come home from work and sleep for a hour, I just do a lot of other stuff, I can have some one shake my hand and not dread the pain of the hand shake, and I can remember things, do more complicated problems at work, at Thanksgiving I had several people tell me that I seemed like my old self and best of all my doctor (rhuemy) who still doesn't believe in AP said to me on my last check up that she thinks I am maybe going into some kind of a remission, I tried to tell her it is from the AP but she just doesn't get it, she keeps telling about another patient that has SD and she found out about the same time I did and how awful she is doing, but she is not on minocin and I would love to find out her name and tell her to do AP, again thanks to all the people on Road back that helped me and gave me my life back.:roll-laugh:
Darlene
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