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Hi. Since starting Minocycline I have been very Sensative to the drug. I have awful pain, weird head aches and eye sight changes. I think it is increasing my inter cranial pressure. I am in Iowa this week and getting IVs of Clind. This is the worse pain I’ve experienced yet. Sad thing is those same symptoms are occurring on the IV. I am not thinking I might be able to handle any drugs in that family. I am a month into treatment. Do you guys think this is a true drug reaction or a herx. Can anyone recommend a good detox method? I was able to sit in the sauna yesterday and after getting out my pain was so much better. Anyone out there there with scleroderma that had any success with any other antibiotics. By the way, I tested negative for Lyme through quest so I don’t believe this comes into play. Thank you for all your help.
Stacy
Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x dailyHi Kiddo;
The timing is just right for a herx.Every time I changed dosage or added an other antibiotic it would happen.If I totalled up all my herx time over the years it would probably amount to a couple years of misery.
At first all I wanted to do was crawl in a hole and try to sleep it off.Later once I knew what was going on I just ignored it and kept running at my usual break neck speed but crashad at the end of the day.Stacy, you and I have the same diagnosis and share symptoms from the disease and the treatment. Thanks to our mix, we seem to be very sensitive to the antibiotics and the herxes are difficult.
Minocycline and clindamycin triggered the same response in me it does with you but these meds knocked the symptoms right out of my body. The fact that you can compose a message is more than I could do when I was herxing. I had great difficulty understanding and communicating verbally and in writing and this lasted for months at a time. But, after each difficult period, I was better than I’d been in years.
Vasculitis is a symptom of scleroderma but it seems to be exacerbated when you have an SLE overlap, as you and I do. I sent before and after photos of my hands through a mutual friend so I hope you saw those and they give you some comfort. AP has improved the vasculitis, as the photos show.
Epsom salt baths saved my sanity. It was the best detox method for me and I often took 2-3 baths a week during herxes. I also found that adding a half bottle of hydrogen peroxide to the bath helped my skin, especially the itching. I have a far-infrared sauna in my basement but I still have some photosensitivity issues so my doctor has recommended against using it fo now. Early in the disease, my skin was damaged and I was unable to perspire or produce oil and the damaged hair follicles meant a loss of hair, even the fine, blonde hair on my forearms. That damage has reversed.
I, too, was negative for Lyme through Quest but I was positive through Igenex because the second lab includes bands removed from commercial tests for Lyme.
As to antibiotics, I started with azithromycin, minocycline was added 8 months later and I did a 2 week course of oral clindamycin 8 months after the mino was started. My doctor bases the treatment on my symptoms, labs and response to the meds.
Stay strong, Stacy. It’s a difficult road but you’re fighting a monster of a disease. It gets easier.
Best always,
Kelly
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsHi Stacy,
Anyone out there there with scleroderma that had any success with any other antibiotics.
It is the dose that is the problem, and not the antibiotics per se. If your treatment is too aggressive you will be killing off the bacteria too quickly, and then your body has to deal with all that garbage. If you don’t slow down, there is a very real risk of causing permanent damage to yourself. So yes, you are right to be concerned.
Since you asked about other antibiotics, I strongly recommend that you talk to your doctor about switching to doxycycline. In general, it is much easier to tolerate than minocycline. I also recommend that you ask your doctor to prescribe 50 mg capsules (or tablets), which will give you a little more flexibility with your dose (in case you need to lower it). Before switching to doxy, a washout period of no antibiotics for one week would also be a good idea to give your body some time to recover and detoxify.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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