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Id like to start on vitamin c to pre-emptively combat the skin discolouration from minocycline.
I did reading on SDers avoiding C, but I don’t really think C will make my SD worse. I don’t think there is a lot of evidence for this. I feel that SD is going to do what it’s going to do because of whatever is triggering it (infections) whether or not Im supplementing vitamin c.
Is there anyone else with SD here who is taking vitamin C?
On the vit C, I found some buffered with rosehips, but it’s time released over a period of 12 hours. I was wondering if this would interfere with minocycline absorption. I.e. say I took one of these vitamin c pills at 10am and then at 8pm take a minocycline. Any thoughts?
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinHi,
I did reading on SDers avoiding C, but I don’t really think C will make my SD worse. I don’t think there is a lot of evidence for this.
You are correct. There is evidence that vitamin C is helpful for SD patients, and none that supports the idea (hypothesis) that it is harmful.
On the vit C, I found some buffered with rosehips, but it’s time released over a period of 12 hours.
A lot of buffered vitamin C contains calcium and/or magnesium. If that’s the case for the product in question, I wouldn’t use it.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinWith all due respect -pinkmoth doesnt have the vaguest idea of the ravages of scleroderma nor the symptoms -Or else a lighthearted approach wouldnt be taken –A person with full blown symptoms might take vit c in moderation say 1000g daily –most likely that wont have effect on discoloration —Somewhere I read it takes about 5000 mg daily —I wish you luck if you go for this dose !!!
I think if one has a disease –one should completely understand the etiology of the disease –not only cause but how the disease really works and understand the workings of the disease –first thing one should know is that systemic scleroderma has a 60% mortality rate in 10 years –For example esophagus problems are caused by an overgrowth of collagen at the so-called trap door –this is excess collagen –Skin tightening is caused by a buildup of collagen under the skin –swallowing issues are caused by an excess buildup of collagen -in fact the disease is called a collagen vascular disease —Sometimes common sense goes a long way in dealing with these diseases –If large doses of C promotes collagen growth -that is counter -productive and could be harmful to a scleroderma patient —I dont need a study to tell me this !!!
Does it mean that SD patients should not take collagen supplements and avoid meat?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousI would never take a collagen supplement -it certainly cant help –as to meat -I just dont know as I dont eat very much meat —heres another example of what I am talking about -most scleroderma people have sore feet -why ? Because padding at bottom of feet are lost –this is the minocyline eliminating the collagen under the feet no where has this ever been mentioned !!!–It isnt exactly known the full workings of minocycline but I have always suspected its way more than an anti-infective —Orthotics or gel pads easily solve the sore feet problem !!! So much more is not understood about scleroderma and minocycline than is understood !!!
Interesting about your feet, richie. It was in my (admittedly limited) understanding that in SD, excess collagen is created/deposited in places it shouldn’t, and then as the disease progresses, collagen is paradoxically destroyed.
Pasted from a write-up on scleroderma in the NY times, but I have read a description of the same collagen-destroying process in other papers:
After the initial collagen buildup….”The actions of the helper T cells are of special interest in scleroderma. For some unknown reason, the T cells become overactive in scleroderma and mistake the body’s own collagen for a foreign antigen. This triggers a series of immune responses to destroy the collagen. When the body creates antibodies against itself in this way, it is called an autoimmune response.”
So I guess whether its the minocycline or natural SD disease action leaving a deficit of collagen on the feet, seems like it would be hard to say.
Also, thank you for the concern but I’m taking my SD symptoms very seriously. So seriously that I’m on this forum every day poring through the archives trying to figure out how to save myself.
I asked my initial question on c because in my (admittedly limited) understanding, it seems that collagen needs available vitamin c in order to be produced, but that I’d never seen any research that determined that the presence of vitamin c stimulated collagen production.
I wasn’t intending to supplement more than 1000mg. I hadn’t seen it stated anywhere either that it would take 5000mg to offset the discoloration of minocycline because yeah at that point, I would never do that.Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinI asked my initial question on c because in my (admittedly limited) understanding, it seems that collagen needs available vitamin c in order to be produced, but that I’d never seen any research that determined that the presence of vitamin c stimulated collagen production.
Your understanding is correct. Vitamin C is essential for the production of collagen. Vitamin C is needed for the conversion of proline into hydroxyproline, which is one of the components needed to make collagen.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI have sore feet and I must wear soft pads. I have RA and I am not on Mino. I have noticed that when I walk more on a concrete path it is worse.
Maybe the way I make steps is somehow wrong. After I lost weight this problem has become more present. Also in the hospitals patients are given different pads or gel socks so they don’t rub their feet too much.RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLinda have you checked whether you might have subluxation in one or more toe joints? Not uncommon with RA n caused (in the case of RA) by breakdown of connective tissue. Feel it in what seems like pads but is actually usually inflammation around the toe joint underneath the foot.
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)I think it is possible. What doctor can check it?
Thank you, Lynnie.RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousAny doctor GP etc or podiatrist. You can also feel it yourself usually if you lightly press around the area. You can feel what seems likee a dislocation in the joint and indeed it is pre-dislocation. Generally treated simply by rx of comfortable shoes with a wide toe box and inserts where applicable. Only treated surgically when really bad.
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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