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Hello Everyone,
It's rebecca again (dx scleroderma) …It's been one complete week on Minocin for me. I started on Wednesday, 30th, my protocol is M-W-F 100mg in the morning and evening. So I took my first dose on Wednesday morning, I felt ok, took my next one at 6ish felt ok and then thursday is my off day but i felt like “Hey, I didnt hurt as much getting out of bed” and througout the day I felt like I was having a little bit of pain relief and then Friday came and I took my Minocin in the morning and in the evening like Im supposed to and I felt pretty decent all day then Saturday came and I was feeling less on my normal pain so I thought wow this stuff is GREAT! BUT SUNDAY CAME….and I woke up in so much pain in my joints and I could barely move to get out of bed, my elbows hurt as If I were in a midnight brawl or something! My knees hurt, my fingers hurt, my back, my skin tightened up it hurt so bad, it felt like all my pains all at once!
So my question is WHAT HAPPENED? Did I forget that soon how much pain I was in before that when I got a little relief that I forgot? Or is the Herx everyone talks about? Or is my dose too low?
After Sunday 🙁 … came Monday and I couldnt wait to take my minocin in the morning so I took it as early as i could Monday morning and I sat and waited and waited then finally I got some relief and I've been ok all week but Im scared again because SUNDAY is coming again….what do I do and is this normal?
Rebecca
Hello everyone,
I take mino 2x a day everyday. This is my 15th week (almost 4 mo's) since I started the mino and i went back to see my AP doc and he wants to start me on Clindy IV 's and he said i have to get a “pick line” in my chest or arm and he explained what it is but honestly Im soooo scared! Does anyone else have a “pick line”? Does it hurt? He said its easier than getting pricked by a needle each time and explained it needs to go to a larger vein. What's better getting it in the chest or arm because apparently if you get it in the arm he said they have a longer tube in your vein to go the distance to your chest vs. just getting it in your chest and having a shorter distance. I cant sleep, I wake up cyring in the middle of the night because I dont know what to expect. Please if anyone can give me any advice, now its greatly needed.
thank you
Today I have been on Minocin for 7 months, wow how time flies! and I have been on IV Clindy for 2 months now going on my third which consist of 1 week of IV's and 3 weeks off. So far during my infusion I feel more tired than usual but the next week I feel preety good then it feels like the before my next infusion I feel like my body needs it, maybe its just mental i dont know. I had a little accident where my dog clipped my legs from behind and I fell to the floor and ended up in the ER with torn ligaments in my knees because my knees dont have the range of motion. so that put me behind in my road back but now Im back on the road again at physical therapy.
Hello Im back and sorry it's been a while since I've wrote but now it's been 10 months on Minocin and next week will be my 6th month on IV Clindy! WooooWoooo
My inflammation levels are now within normal range 😀 , I sleep much better at night, Im in physical therapy 2x's a week to get my legs strong again because I still have a hard time going up and down stairs. My fingers are still curled and skin is still tight but the top of my hands have lil wrinkles, hooray for wrinkles! I never thought I would ever say that ;). My elbows dont straighten all the way but I have noticed and my nurse, when I get blood taken every month that my skin has softened in that area. My skin on my chest has gone from a skin score of 3 to a 0-1 which is great! My thighs in front have loosened up from a 3 to a 1 but the back of my legs are still tight isnt that odd? hmmm lets see what else oh my arms are still tight around my bicep area and wrist and forearm. My upper and mid-back was the only part of my body that was not affected isnt that odd too?
I had a doc visit Monday, Feb. 2 with Dr. F in Riverside. he said all my lab work looks really good, except for a couple things I was put on DHEA because my adrenal glands were not working up to par and I was given L-cartosine to help build some of my muscle loss. Then I was put on this fermented wheat germ drink which I started taking yesterday for the first time. I will have to post this on the discussion board to see if anyone has heard of it with all the info I have it at home and Im at work right now ;). So overall I feel pretty good, I may not be able to jog or run yet or flatten my hands out or wear high heels but I feel pretty darn good and I thank everyone who has helped me with their inspiring stories to help me get here and Dr. F too! Hugs and kisses till next time……..
Gees how time flies!
I cant believe its been since February since I've written anything on my progress thread! Alot has happened ….In April it all started out with an ulcertion on my middle finger knuckle and got infected by an opportunist bacteria! I had it for about week before it became extremely painful that i ended up going to emergency and they admitted me for surgery after they had done an mri on my finger and saw that the infection went into the bone!! So they had to remove the cartilege and remove parts of the bone that had the infection. I feel alot better now with dressing changes and hand wrapped up so the wound does not get another infection because the wound is wide open, i didnt have enough skin to close the wound as well as the skin being very thin and tight on my fingers it just rips like paper. So i had a 24hr iv drip of antibiotic for 6 weeks to make sure there isnt any more bugs ! Mind you im already on minocin and clindy and they did not help fight this particular bacteria .And if the wound didnt close i would have to have a second surgery but it healed completely on its own so i didnt have to have a second surgery to shorten the finger!
Now its July and I have an appointment next week with Dr. L in riverside so I will post my bloodwork so i can show everyone how well Im progressing. I feel a bit stronger than I did 3 months ago slowly but surely. I cant jog yet but i still hope to. I can go up stairs a little bit easier, going downstairs is still a challenge but im working on it.Today is October 221, 2009 and I feel goooood! :roll-laugh:
I have been feeling so much better my spirit is back and i have that lil spark back too!My mind is not constantly preoccupied with things like…. how Im gonna make it up or down those stairs or I better hold on to my keys because if they fall how will I pick them up off the floor, etc! I can reach the floor and pick things up off the floor wahoooo! I used to feel so much pain I felt like i was dying slowly inside and now I have a pain level of a “1” and I dont know how I survived before AP! I still have patches of skin tightening on my bicep areas and forearms but my legs have loosened up significantly. I have been told by people who dont see me on an everyday basis that my face has gotten fuller and my skin is not as tight and shiny and I do agree, the only thing is my smile doesnt have the range it used to so basically i still have tightness around my lips. I was put on lumbrokinase by dr. f in riverside and havent noticed anything yet its been about a month but I will stay on it cause i do know it has helped others. I cant run or jog yet but it is getting easier to go up stairs, I am working on the going down part still at physical therapy. I can walk longer distances and not feel like my knees swell up like basketballs now there like small oranges :P. My flexability is alot better, I can reach my toes no problem, i can FINALLY lay on my stomach to get a massage. When i would get massages I would have to lay on my back with all kinds of pillows supporting my knees, arms, etc. and i was never able to lay on my stomach for the massuese to massage my back….NOW I CAN !
BLOOD RESULTS..
sed rate 11.0
dhea is up from74.4 to 140.4 normal range is 40.0-500.0
November 3, 2009
Yes today is a good day! I had my doc appt with Dr. F on Nov. 26th and he was very happy with my results (i hadnt seen him in a while because i would see Dr. L his associate on previous appts). He did my skin scores my overall body was an average of 1 compared to the beginning I was a 2-3 overall body!! my fingers are 2 compared to a prevous 3 but they are getting better :roll-laugh: The other part which is still tight is my bicep area, it has about a 3 inch band around my bicep to the back of my tricep full circle. thats a 3.
Dr. F changed my IV clindy to 5 days of 1200mg from iv clindy 7 days (300mg 1st day, 600mg 2nd day, then 900mg 5 remaining days). I still have my picc line in its been about 15 months with it. My nurse comes once a week to change my bandage and clean it up and make sure i dont get an infection. wahoo..
And guess what else….Two days ago I finally saw my first vein on the underside of my wrist!!!! I couldnt believe my eyes I showed everyone! Since my SD my skin got so tight all of my veins disapeared on top of my hands and forearms. wahooo
Im still on the lumbrokinase and im not sure what to look for but i feel good. Im also still on the dhea and thats improving on my bloodwork so my next appt i hope to discuss if i should go off and see if my body regulated itself or to stay on.
My legs feel great, im still in physical therapy working on strengthening and working on my range of motion on arms and shoulders. They also work on my hands on mobing my finger joints because of the contractures.
Overall i feel pretty good and really happy again, i feel like i have 75% of my life back and i cant wait to get back into the gym and jog and run like i used to, i really miss that.
January 8, 2010
Happy New Year!
I have some great news! Every year about this time my physical therapist measures my range of motion in my knees, elbows, shoulders and some joints in my hands. So compared to last year my knee leg extension sitting in a chair is better by 5 degrees, my shoulder range is better by 10 degrees, and the joints on the top of my hand are better by 5 degrees, and my elbows extension is better by 5 degrees…..wahoo i am supper excited!!
I am starting my second round of clindy at 1200mg/5days. My first round made me really naseous so Im curious to see if it gets any better the second and third time around. I havent noticed any boost of improvement but I will be patient.
Bloodwork from Nov. 26 reflecting my iv clindy dose being upped to 1200mg 5 days/week. Now I know why i felt so crappy.
sed rate: 14.0
mycoplasma IgG: 2.1 (first time showing positive for myco)
Happy 2010
Rebecca
February 3rd, 2010
I did my 2nd round of clindy 1200mg for 5days and whatta ya know I was fine, I was dreading my second round because I felt so awful and naseous my first time but I had no problem well just tired but thats not bad.
Well, I know with sd, some would complain of their skin itching due to skin tightening and I had real bad skin itching at the beginning of my sd so bad i would scratch and bleed and leave scars but eventually the itching went away after starting AP. But within the past couple months I started itching again behind my knees and ankles and wrist. I started to think ut oh whats going on so I made sure to bring it up to my AP doc so I had my appointment with Dr. L and he said it could be due to the fact we changed the clindy to a higher dose and its stirring things up, also could be the reason for me feeling awful on my first cycle of clindy mg change. So we looked at my bloodwork and walla….I have never tested positive for Mycoplasma and I tested POSITIVE at 2.1 so for sure the clindy stirred things up! Dr. L advised me to take benadryl for the itching and it helped me for sure and also helps in the sleep department.
Untill next time….
April 1st, 2010
I just got my bloodwork back from Dr. F's office
Nov. 24, 2009: sed rate 14.0 mycoplasma 2.1
Dec. 22, 2009: sed rate 10.0 mycoplasma 1.8
Jan. 26, 2010: sed rate 26.0 mycoplasma 2.6
March 9, 2010: sed rate 20.0 mycoplasma 4.0 !!
I had an appointment with a lyme doc on march 31st and had the Igenex test done and get my results in 3 weeks when i go back for my appointment. The doctor said that there is absolutely something going on in my body if Im responding to Minocin and clindy being that clindy is used for Lyme so im really curious to find out my results!
May 11, 2010
Hello Friends!
Prior to getting tested for Lyme, I did feel like i was begining to hit a plateau with my treatment. So I did talk to a few friends on the roadback board and they suggested I get tested for Lyme. So i got tested and here are my results:
IFA, B. Burgdorferi G/M/A: <1:40 Titer
Igenex IGM Result : neg
CDC?NYS Result : neg
18-30 : –
31 kDa: IND
34-39: –
41: +
45: –
58: +
66-93: –
IGG Result: Neg
CDC/NYS Result: Neg
Alll test neg except 34 and 41 are IND
My Lyme doc said it doesnt mean I dont have Lyme but its not stating from my results I do have Lyme BUT he did say I do have some kind of infection going on!
My Lyme doc did take request other bloodwork while I was there and Iodine levels were super low he started me on an iodine supplement. My vitamin D were super low he said that he did a double take and asked me “Are you sure your feeling ok?” and I said “yes i guess , why?” he told me my levels were in the range of rickets! so he gave me a vitamin D supplement to take. Then……yes theres more…..my mercury levels came back really high so no seafood for me and he started me on chlorella and advised me to excercise more and try to sweat. Phew!!!
So basically he wants to try get my immune system back as healthy as possible and then run some more test to figure out what other co-infections I have going on.
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