- This topic has 19 replies, 5 voices, and was last updated 4 years, 8 months ago by
.
-
Posts
-
I’ve been taking minocycline for nine years and my digestive system is trashed. I have terrible GERD with what I believe is low stomach acid, which keeps the lower esophageal sphincter open, causing digestive juices to bounce up into the esophagus. I have rumbly tummy, lose and frequent stools, bloating and discomfort.
I’ve tried every form of enzyme, ACV, GI Hist Support, Betaine HCL, and a slew of probiotics, most recently PREBIOMED XOS. I am not gluten or dairy intolerant so let’s not bother going down that route. I never had problems til I started taking mino. My question is this. Can I take a break from the mino for several weeks and let my gut heal? My quality of life is dismal now, popping every type of preventive pill prior to eating anything with no results. I have no symptoms of scleroderma now and recently had an echo with no PH, although sadly my ANA has climbed back up to 1:1280 from 1:640.
I don’t want to regress but I really think my digestive system needs a break. I take mino with a cracker away from dairy, iron, etc.so it’s not on an empty stomach but I still feel when the capsule opens it wreaks havoc on my stomach lining, etc. I am only able to take Zydus capsules. Others don’t work. P.S. my liver counts are always mildly elevated, for whatever that’s worth.
Our daughter is too young for MINO so we only have Azithromycin as an option as well as a rotation of other tetracyclines. I don’t know if it’s possible and others on this site might know the answer but could you try to switch to Azithromycin/combo for a while? You might slide back some but maybe it will keep symptoms at bay long enough for you to heal.
I would have suggested going gluten and dairy free but you said you know for sure you are not intolerant. I am not sure how you know this? Because of where you are at right now I wish you would consider a trial without them for like three months. Even though you were tolerant in the past….things can change and I know this from personal experience. I ate them all my life and then in my forties I could not. Anyway, maybe you are one of the lucky ones but gluten is an indigestible protein. No one can digest it. But certain immune systems react to this information differently than others. But I regress. It certainly couldn’t hurt anything. As far as the antibiotics I know I got off of all antibiotics for three weeks in order to do the Igenex test for Lyme and I could not tell any difference. I feel for you with this decision making because everything is a guessing game. You might study slippery elm tea. It is incredibly healing to the digestive tract. It also tastes good. Do you have faith in your doctor to help you make this decision? It is scary because if remission is lost it can be harder to reign back in which we have seen through other testimonies on this site. Congratulations to you for controlling your symptoms so well. I am especially proud of your pulmonary pressures! That is a huge deal. Maybe your doctor can work with you through simple measurements of blood work or such to monitor you very closely if you decide to give it a break? How much Mino have you been taking? If you have been at the full 100 milligrams BID dose then maybe ask your doc about cutting back to a maintenance dose of twice a day on Monday Wednesday Friday and seeing how that goes? Then maybe cut down to the maintenance dose of 100 mgs MWF. Please let us know what you and your doc decide. My heart is with you. These things are never easy.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHello Redrock,
You may have already used colloidal silicic acid, but if not it’s worth a try. I find it helps with stomach issues as it literally coats the intestines with a protective layer enabling it to heal. It also binds toxins and pathogens.
The brand I use is silicolgel which can be found on any online pharmacy but there are many other brands.Thanks for this, Lemons. I have not heard of this and will study this. This is what slippery elm tea does as well. It forms sort of a gelatinous layer that protects the entire digestive system. I probably need to look into these for myself for prevention. Thank you!
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFWhen I see that name though it makes me think of silica which in my earlier studies did not come across as something that I wanted. In trying to figure out my flare I realized that we lived not too far from a silica rock quarry. I always wondered if this played any part in my fall. I know silica is really good for nails and hair but people with scleroderma might want to study silica based products before using. I have not studied it in five years but just trying to remember. Maybe this is not associated with silica at all. I looked it up and it sounds great for digestion and other benefits. I do want to study it more.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFYes. Just looked it up. I remembered correctly that silica can induce scleroderma and other AI problems. Colloidal silicic acid is silica suspended in liquid form. Maybe being suspended and unable to breathe it into the lungs makes it completely different. I don’t know though. I just don’t have good memories of driving though the chalky stuff with the inside air on in the car. It sure seems to have a lot of positive benefits though in this form.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHello Spiffy,
Silica dust, if inhaled, is not good at all. But this is silica in a suspension, gel form. It would be impossible to inhale it, unless you tipped your head back and poured it down your nostrils. The body doesn’t absorb the liquid, it’s a bit like a rubber glove for the digestive system,it creates a barrier between the gut and ingested irritants.
A superior brand, slightly more expensive is Enterosgel. I’d use this if I was taking it for a while because it has no additives.Thank you, Lemons! I will definitely look into this! From what I read it has many benefits.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFWell I saw my doctor today and discussed my digestive issues. After nine years on minocycline he wants me to go off of it indefinitely. I was concerned as to how I will know if I am regressing as I never had any symptoms of scleroderma so to speak aside from some mild Raynauds in winter and I said I was most worried about my pulmonary hypertension returning. He feels comfortable monitoring me by watching my CRP and Anti-Centromere antibodies to make sure they don’t get any higher. While I did for several years achieve normal titers he thinks since I am asymptomatic and have normal pulmonary pressures that I have the antibodies but the disease is dormant at this time.
This is a scary thing as I have not gone without mino for nine years but I have to let my digestive system heal. He also prescribed Sucralfate 4 times a day.
Redrock, I am proud of you for recognizing and tackling this head on. What was your dosing schedule?
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFI was taking 100 mg twice a day, every other day. I was surprised he suggested cutting it entirely. I thought he’d first suggest reducing the dose. But he was also very alarmed that I’ve lost so much weight. I think he recognizes that my digestive health has to take priority right now.
Hi Redrock,
Just a few additional thoughts to add to the great ones above!
My integrative rheumy suggested zinc carnosine for digestive upset (he doesn’t like PPIs) as it has gut healing properties and helps rebuild the intestinal wall and mucous lining. I’ve found it to be a very helpful supplement.
Have you been checked for SIBO (not uncommon GI issue with SD) and H. Pylori?
One of the “patient experience” guidelines for long term use of AP (e.g., about 5 years) is to take a break from the antibiotic successfully being used (or if tolerance is experienced), and rotating out to a different class of antibiotic or even one within the same class (e.g., tetra or doxy).
With a high ANA I think I’d be reluctant to give up any medication that had brought benefit over the years, too. However, rotating to a different abx can be surprisingly beneficial. If, for instance SIBO is an issue, mino/foxy and flagyl are complimentary, so one can kill two birds with one stone, so to speak.
Please let us know how you get on. If you decide to stop your AP for a month or two, it’s not a biggy, but you’ve been at this for a while now so will be wise in remaining alert to any signs of symptom return.
Thanks Maz.
A few years ago when I was having bio-equivalence issues with generic mino, I was placed on Azithromycin. It worked for a while and then it stopped. They way I knew it had stopped working was this: I live down the street from a child’s preschool. One day in September or October I saw the kids outside and thought to myself, “Where are their mittens? Aren’t they cold?” It was 58 degrees. That’s when I realized my Raynaud’s was back. I’d been symptom-free for so long I didn’t remember what it was like until I was reminded.
So I figure I’ll know in 6 or 8 weeks if I’m okay or not.
You must be logged in to reply to this topic.