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Hi everyone! I will apologize in advance for the length of my post! But, I hope it will help and encourage others as I provide ‘real time’ information from someone who is doing the AP protocol right now.
I was diagnosed with limited systemic scleroderma in January of 2013, after suffering very aggressive clinical symptoms since July of 2012. My rheumatologist prescribed Methotrexate and folic acid.
The way I felt after one small dose drove me to the ‘forbidden’ internet where I discovered roadback.org. Treating scleroderma with Antibiotic Protocol (AP) completely resonated with me. So, tapping into the considerable and helpful people at roadback.org, they directed me to a local doctor in MN who treats his rheumatoid and sclero patients with AP. I have decided to post my progress every three months in an effort to provide ‘real time’ information from someone who is doing the protocol right now. I started with the oral MINOCIN Feb 28, and have done three rounds of 5 consecutive days of 1200 Mg/day of Clyndamycin IVs the last week of July. This is my six month update. If you are interested in my 3 month update, just let me know and I can post that as well. For the sake of comparison, I am using the same categories or ‘markers’ to better track my progress.
ENERGY LEVEL- Excellent. In February of 2013 it hurt to move. By April, I was doing 40-45 vigorous minutes on the elliptical bike several times a week. At that time I couldn’t speed walk or run with my dog anymore because my knees hurt too much from the impact with the pavement….so the low impact of the elliptical was a great alternative. I’m happy to report I can comfortably speed walk 3+ miles with my dog now. We are both happy about this! There really is nothing I can’t do anymore…..except for jogging…..yet. I have a busy household; and still work part time, serve on my school board, volunteer at my school and church, attend Bible Study, exercise, get to all my kids sporting events….lunch with girl friends, etc, etc……… I feel pretty much ‘normal’ in this respect. It is such a blessing for my well being. I am beefing up my iron intake as my iron levels were low at my last appointment.
PAIN in KNEES- See above! The inflammation in my knees is significantly down,…I can even sit cross legged now….and sometimes tuck one leg under the other at the dinner table (which for some reason is how I have always liked to sit). My goal is to be able to run again, as I used to run 3-4 miles/day. My knee progress has been interesting though…I had a few weeks in June where my left knee hurt so much I could barely walk. My chiro figured it was due to the fact my tendons and ligaments had been so tight that things were literally pulled ‘out of place’ in my knee. My left knee is just a little sore now in the same isolated area; but not enough to stop me from getting out and doing everything. Going up and down stairs is no longer painful either.
SWOLLEN HANDS- I was hoping by August I could get my wedding ring off, but alas that will remain a future goal. They have improved A LOT though. They are still a little swollen, but ‘pain’ is really not the correct word to use anymore. ‘Stiff’ is the better word. I think because they were so bad, they are just going to take more time. I noticed I couldn’t stretch a full octave on the piano a few months ago, so that is going to be something to help me measure my progress here also. Small water bottle caps are still a little hard to open but it doesn’t ‘hurt’ to open them anymore. Can’t make a closed fist yet. It’s really just my knuckles that are the problem. I can’t get my ring over my knuckle.
RAYNAUDS- Since it’s summer in MN I’m LOVING the heat. AC will set off a few attacks throughout the day, but it’s short lived and my fingers don’t stay white very long. In fact, yesterday we spent a few hours IN the lake with our neighbors, the water temp was 82 and my fingers were fine. It was really lovely actually and it felt really good to swim. Swimming and treading water felt wonderful for my whole body.
BLOOD PRESSURE- Last August 2012 it was 195/105. (I am still surprised my GP sent me home with that reading..) Today it is 110/72. I’m down to 2.5 mg of lisinopril and 2.5 mg of amlodipine, and fully expect I may be able to drop one or both of those someday. I never had high blood pressure until sclero.
SWALLOWING- Last August I had a permanent ‘lump’ in my throat. It went away and now it seems to be back, same side, same feeling. I’m ignoring it for now…as it could be seasonal allergy stuff. My ENT last year said it looked like there was a hard looking drainage in my throat. I am PRAYING and PRAYING my esophagus will come out of this unharmed.
SKIN TIGHTENING- the tightening in my hands, face, neck, wrists, arms and legs, especially my inner thighs is significantly reduced…almost gone in most areas. Stretching my arms feels GOOD now….no pain. Just a little tightness. My elbows make a ‘pop’ sound sometimes now when I stretch them out too….it’s like everything is loosening up. My forearms and hands are still ‘thicker’ than they should be.
ACHILLES TENDONS- they are still a little tight, but no longer hurt or cause any pain in any activity.
DIGESTION- Thankfully, I have had no digestive issues and eat whatever I want. All systems appear to be in good working order and I still attribute much of this to a product called Digestiqure. I’ve been taking this product since January and will continue with it. I will say however, that my doc really wants me to consider switching to a non inflammatory diet…..no gluten or dairy are the biggies. With three teenagers in the house all summer, I didn’t want to attempt something like this yet. I have greatly reduced my sugar intake (I didn’t eat much of it before anyway) and try to eat more non meat proteins like avocados and almonds…..which I love. I am going to try a 3 day juice fast soon and see how that goes…….I have not lost any weight.
SLEEP- I have been sleeping very well for months. No more tossing and turning due to sore spots and or trying to stretch cramped calves. My biggest challenge is getting enough sleep….we are so busy that I tend to stay up too late and get up early. I feel much, much better when I get a solid 7-8 hours of sleep. But I am soooooo thankful I sleep well again.
SIDE EFFECTS- I developed mild tinnitus from the antibiotics. I have been taking a supplement for it, and it has remained stable. No better, no worse. I also have this gorgeous tan that just doesn’t fade way like it used to. Not sure if it’s sclero or the antibiotics,…. I’m a blue eyed Scandinavian blonde who always tanned easily, but it just never hung around this long. I guess this was a summer ‘bonus’ I hadn’t counted on. I don’t sit in the sun but I don’t try to avoid it either….I just wear sunscreen and do my thing.
PSYCHOLOGICAL OUTLOOK: I decided to add this as a new category. My overall sense of well being is really, really good. My kids say they often forget I have this disease because I’m so ‘normal’ now. This is gold to me.
NEW DEVELOPMENTS: Scleroderma must have triggered full blown menopause…I’m almost 50. My periods stopped cold when my symptoms appeared last August of 2012. It’s interesting to me this coincided with the onset of scleroderma symptoms….. Unfortunately for me, intimacy has become very painful, and it appears it is directly related to sclero. I apologize if any of you find this admission embarrassing to read but it’s my reality. My husband and I will remain patient and hope and pray that this will improve along with all my other symptoms too.
So, this is my protocol to treat sclero: 100Mg of MINOCIN twice/day M, W,F; 300 Mg of Clindamycin 4 times/day ONE day each week. Daily; I take Digesticure, 1000Mg of Vitamin C, and probiotics. Several times a week I also take 5000Mg of L-Arginine. It’s awesome…and tastes like gatorade….full of vitamins and minerals. I will start an iron supplement next week to get my iron back into normal levels. Doc has also suggested black strap molasses for iron. Apparently, it has one of the highest absorption rates of any iron rich food or supplement. Also, as mentioned earlier, I have done 3 rounds of Clydamycin through an IV. I can do this monthly, but so far have chosen to have 6-8 weeks in between…..
Finally, I cannot leave this post without confessing my great faith in our great God. One of my personal goals has been reading the Bible through cover to cover each year. I have been faithful with this for 5 years so far…part of the reason being I want to be so familiar with His Word that even though I have trouble memorizing Scripture, I will ‘know’ it by treasuring His truths in my heart. As I was spending a lovely quiet time on my deck yesterday morning (my dog sits out there with me with her chin on the railing, looking for deer) God really spoke to me through these verses in the Psalms:
Psalm 119:92- “Unless Your law had been my delight, I would then have perished in my affliction”. (142) ” The entirety of Your word is truth, and everyone of Your righteous judgments endures forever.” (165) Great peace have those who love Your law, and nothing causes them to stumble.”
Psalm 121:1-3 I will lift up my eyes to the hills, From whence comes my help? My helps comes from the Lord, Who made heaven and earth. He will not allow your foot to be moved; He who keeps you will not slumber.”
Psalm 125:1-2 Those who trust in the Lord are like Mount Zion, which cannot be moved, but abides forever. As the mountains surround Jerusalem, so the Lord surrounds His people.”I’d also like to share two of the songs we sang in worship this Sunday morning. If you have the time, please listen and be blessed.
“No One Higher” by John Hurst: https://www.youtube.com/watch?v=IFCBhTe-WYg and “This is how we know what Love is” by Matt Redman https://www.youtube.com/watch?v=zRF378KqX5gI take great comfort in these truths…that no matter what happens I am CALLED, BELOVED and KEPT by God. I belong to the One great God and He is GOOD. The entirety of His character is holy and good and He will use my affliction for my good and His greater glory. We all understand how much we love our children and want only what is best for them. He loves me in the same way…He’s my heavenly Father. He will keep me forever and ever.
May all who read this today, come to know His love for you in a much deeper and more personal way.
I’ll post my update again in 3 months!BonnieG
What a lovely post, Bonnie. Congratulations! Such phenomenal progress, so inspiring, such generous sharing. Thank you.
KrysP.S. I personally think that your first 3 months progress report would be of great interest to all the beginners and “old” forum members as well. I myself am mightily curious. Way to go girl!!! Keep progressing into rapid remission!
Hi Bonnie
So pleased to hear of your wonderful improvements.NEW DEVELOPMENTS: Scleroderma must have triggered full blown menopause…I’m almost 50. My periods stopped cold when my symptoms appeared last August of 2012. It’s interesting to me this coincided with the onset of scleroderma symptoms….. Unfortunately for me, intimacy has become very painful, and it appears it is directly related to sclero. I apologize if any of you find this admission embarrassing to read but it’s my reality. My husband and I will remain patient and hope and pray that this will improve along with all my other symptoms too.
This may not be SD related and more to do with menopause. If yes, there are options that will help. A really benign way to treat is with an estradiol pessary. Name of one here and in Europe (may be different in U.S.) is Vagifem. Because it is an ‘external’ treatment’ only a miniscule amount enters the bloodstream. Your family doc will be able to advise. Alternatives may be useful to investigate if this doesn’t appeal. I am currently investigating an interesting natural approach at this site: http://wholewoman.com (am not involved in any way with this and have just discovered it).
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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