IV Clindamycin

[finsfan]

Hello,

Can someone please comment on your experiences/knowledge of adding IV Clindamycin to fight Sclero? Both good and bad. Trying to find out more before deciding whether to start the treatment.

Thanks so much.

[mschmidt]

finsfan,

Welcome to Road Back! I can only tell you about my experience with clindy iv’s, which has been extremely positive. I’ve been doing 5 day, once monthly clindy iv’s since January of 2009, and I’m VERY close to remission, with 90-95% of my SD symptoms completely reversed. I will say though, that the first 6 months of the iv’s were HELL for me–I had a lot of swelling, pain, burning and worsening of skin tightness throughout my entire body. Thank God I had people on this forum, as well as an experienced AP doctor to guide me through those dark months or, I’m not sure I would’ve been able to get through it. My herxheimer reaction was ridiculous BUT, I went from feeling horrible to NO pain, it seemed over night. SInce then, I have built my body up–I call it the “untangling” of my body, since I was so tight and had NO range of motion for 1 1/2 years. Now, I run 6x/week, at 8 minute miles again, feel fantastic, and barely notice I’m sick anymore. I was REALLY sick in January of 2009, and wasn’t sure I was going to make it, therefore, wanted to be as aggressive as I could with treating it, since I was progressing so quickly. Another important component of my recovery was getting tested for Lyme Disease, and starting aggressive combo antibiotic therapy immediately. On a scale of 1-10 prior to all of this, I was at a 15 level for pain every day. For the last 10 months, I’m at a 1-2, which I attribute to being 40 years old, not to SD. 😀

I will say, that it’s a very personal decision to do iv’s. I get them through homehealthcare, which has its’ ups and downs, depending on what nurse shows up, and how many times she sticks me. When were you diagnosed w/SD? What are your current symptoms? There are plenty of people on this forum (Richie is a good person to reach out to) who used only oral Minocin, and is doing fantastic, with reversal of his symptoms. It does take time, even with the addition of iv’s but in my opinion, is well worth the wait. I have my life back, and feel very normal again.

Good luck with whatever you decide to do.

Maria

[Corey]

I’ve been doing 5 day, once monthly clindy iv’s since January of 2009, and I’m VERY close to remission, with 90-95% of my SD symptoms completely reversed. I will say though, that the first 6 months of the iv’s were HELL for me–I had a lot of swelling, pain, burning and worsening of skin tightness throughout my entire body. Thank God I had people on this forum, as well as an experienced AP doctor to guide me through those dark months or, I’m not sure I would’ve been able to get through it. My herxheimer reaction was ridiculous BUT, I went from feeling horrible to NO pain, it seemed over night. SInce then, I have built my body up–I call it the “untangling” of my body, since I was so tight and had NO range of motion for 1 1/2 years. Now, I run 6x/week, at 8 minute miles again, feel fantastic, and barely notice I’m sick anymore.

I just wanted to make sure I understand that your doing 5 I.V. bags every month?

For over a year?

Do you have a port/picc line?

I only ask because I’ve been doing only 1 bag per month…after the initial 5 day-twice a day..

I too, have no range of motion, still in a wheelchair, I feel the I.V’s help maybe I need to do more of them..

Also your thoughts on LDN??

[mschmidt]

I do a once daily (1200mg) iv for 5 days in a row, every 4th week. My first series of iv’s occurred in January of 2009 with Dr. S. in Iowa, where he administered twice daily infusions for 5 days in a row. I didn’t do anything in February, awaiting my appointment with Dr. F, who prescribed my current regimen, which I’ll be doing until June of this year. So, by the time it’s all over, I will have a total of 2 years and 3 months worth of iv’s.

I didn’t want a picc or a port so, I’ve opted for a peripheral iv each time. I’ve been very fortunate, in that I have never experienced an infection, or had to pull out the heplock, which stays in my vein for 5 days. The only issues I’ve had is finding a nurse with enough experience, who can stick me once, as opposed to multiple times. (technique is everything, and I opt for nurses who have pediatric experience, since children’s veins are difficult to access because of how tiny they are)

As far as my range of motion, mine is 90% better but, that took about 8 months, and a persistence of stretching and exercising to get it back. I remember not even being able to bend over to touch my hands to my knees. Now, I can bend over and touch the floor with my hands, reach my arms around my back, do walking lunges and squats, and even push-ups.

I’ve been using LDN for about a year. I’m trying to gauge how effective it has been for me personally and, just got my refill yesterday, after taking a break from most of my supplements for the last 3 weeks. I’m trying to monitor what’s helping me, and what’s not. I feel no fatigue, pain or joint issues off of anything yet. However, I do still take mega doses of probiotics daily, as well as my systemic enzymes (Vitalzym X), bio-identical hormones, my compounded thyroid every other day, DHEA nightly, and Vitamin D3 every other day.

I’ll be starting to take my LDN again tonight, and see if it makes a difference over the next few weeks. I have issues with having too much energy but, this seems to be tapering to normal levels, since decreasing my thyroid, testosterone, and treating my babesia co-infection.

Maria

[Corey]

Hey Maria,
Thanks for sharing, although I have some more questions.
Your story is very inspiring to me, I want to get my life back also, and I know its not going to be a quick fix..
I’m just trying to figure out if I’m doing enough, I like your I.V. regimen. I’m doing 900mg once a month and starting to think its not enough, I’m seeing some very small improvments. any thoughts?
Do you recommend me seeing Dr. F in Riverside? What does he offer different than Dr. S?

My main focus now is to try and get this body moving again, to help out the abx..

Thank you for all your thoughts
Corey

[mschmidt]

Corey,

I’m going to PM you right now.

Maria

[vonni]

I am another IV Clindamycin success story. I no longer have any residual of scleroderma with the exception of some minor stiffness and puffiness in my hands, especially in the morning. I noticed the beginning of reversal of scleroderma within 48 hours after the first 2 days of IV therapy. I just completed another 5 days of IV Clindamycin 900 mg BID with Dr. S. This was a one year follow up to the original IV series. Yes, I believe that IV Clindamycin definitely expedited my progress in defeating systemic scleroderma and lyme. Have you been checked for lyme?

[mlouise]

I just had my first round of Clindy IV in December (1x per day for 5 days). By the end of the week I was able to move my middle fingers at the first and second joints. This is something I was not able to do since August. I was also able to bend my knees especially the right one which was mostly locked and I can move my ankles front, back and side to side. I can not quite do a ballet foot, but I am much closer than before. My doctor did the IV in his office. He recommends having the IVs at least every 6 months even closer if possible. I am going back in March or April for another round. I was very happy with the results. I was definitely improving with the mino, but the clindy really gave the healing process a boost.
My SD was also very fast moving. My skin number in Feb, 10 was 15. My skin number in May,10 was 42. My family thought (in July) that I would not live til Christmas. Now I feel sure I am on the Road Back, thanks to both the mino and the clindy IV. As a side note I also have evidence of Lyme and I am taking that protocol as well. Hope this helps with your decision. MLouise

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