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Is it true many if not most autoimmune patients have low D and/or low iron?
How many of you regularly get tested for these things and suppliment?
I don’t understand the two types of vitamin d well. Does one really act as an immunesuppresant?
Thanks!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
I always have normal to normal high everything iron except for ferritin. It is always at the lower end of normal. It was 14 this past time. I have given up trying to raise it because my iron is fine everywhere else and I don’t want to over do my iron everywhere else just to get my extra iron stores up. Obviously my body sees no need in having a lot of extra storage. But they say to avoid cancer to keep ferritin under twenty anyway so I am just not going to worry about it. I like to keep vitamin d between 60 and 80 but I have no idea what it is because my doctor ordered it but Quest just left it off. However I am sure it is lower because I have not been supplementing. Yes. D3 seems to be the best absorbed.
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, minoMWFHi Luck;
Your D3 must be in the proper ratio to D 1,25.Often when one has an immune disease the 1,25 is way too hig and that is a sighn of infection and the only way to bring it down is to not supplement.Long long ago my doc said I would feel better by taking 1000 units of D a day and the disease whent crazy.D is a seco-steroid so naturally you feel better despite the disease progressing.You really have to monitor the 2.So when you test your blood you should test for both?
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, minoMWFThanks so much for explaining that Lynne. I knew something was amiss with vit D supplementing. I tried for months, did what I was told and it didn’t go up! Then I gave up supplimenting D and I kept getting BETTER instead of worse! I knew something wasn’t right…
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Lynne, is there any other research on this besides Marshall in 2009? Thats all I’ve found so far. I know theres a bit of controversy surrounding his protocol. I’d love to find some other, newer sources.
What about the benefits of sunlight vs supplements? Is it possible the supplements are being used differently in our bodies?
I get the feeling this is right about D being more complex, I just think I might get grief over saying it.
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Hi Luck;
I will be out longer than expected so you might like to check out the site chronicillnessrecovery.org as the report all the new science on vit.d whether it supports their views on not. This site is based on MP but has been tweeked a lot,kind of an MP lightThanks! I’m open to new ideas and really like reading different points of view.
Thanks so much!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
I know my RA factor was lower taking 2000 ius daily. But that may have been coincidence. As in everything else about my health it is always a guessing game.
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, minoMWFmy D and iron are very low. but I feel like supplementing D makes my autoimmune symptoms worse so I don’t supplement. if I can ever stabalize again I’m going to try real low doses of D to bring my D into range rather than using the massive doses doctors love to throw at me.
I feel like the large D doses by themselves throw other minerals out of whack or something. I don’t know. I just know that every single time I’ve tried to supplement D I seem to have severe consequences in the form of amplified autoimmune symptoms. I think one or two other people on the forum have a similar response to D.
by the way I am not at all saying not to take D just that I have a suspicion that treating it effectively at least for some people may require more nuance than just supplementing it by itself in huge doses.my iron isn’t great and my ferritin is distressingly low. started supplementing that recently as well as making a blended spinach smoothie 3x daily with a bit of vit C powder thrown in for maximum absorption. tastes pretty dang good.
I think the low iron is due to the general poor state of my gut, which is not absorbing stuff well. have you had a stool test GI map done, like the one from Genova, to assess how well you are absorbing nutrients?
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 Luck;
I came across this but I know there is more somewhere.https://mpkb.org/home/tests/125d
Great! Thanks so much. I’ll check that out.
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Giving my anecdote about Vit D, when I first started having symptoms of inflammation, before I even saw a rheumatologist, I saw a chiropractor who suggested I take high doess of D3. I don’t remember how much, maybe 5000 IU. My symptoms at that point were only in my big toes, making me think it might be gout. After I started the D3, my whole body got involved, hands puffed up, wrists hurt, calves ached, etc. I remember it hurting to brush my hair, feeling like my wrist might break. I got some prednisone, went through a couple of more conventional drugs (plaquenil and sulfasalazine) which didn’t work, and eventually found AP, and started on Minocycline. I also stopped taking D3. I made slow progress, and while I am not sure I would consider myself in full remission, I am far far better and live my life. I take a multivitamin with D3 and Iron, but that is as much as I will take now.
jasregadoo,
very happy to hear you are doing well again and can live your life. how long have you been on AP?when I very first developed my full blown autoimmune symptoms (joint and tendon inflammation, skin changes) I had just started taking high dose vitamin D supplements.
I started again in january because every time doctors see my low D they freak out.
I’ve been doing awful since Jan. I stopped the D supps fr 2 months but continued to decline. another doctor really pushed for the D again and I started it. 2 days later my skin symptoms and inflammation came back in full force.I’m not blaming the existance of my autoimmune stuff on the D but it seems to respond to it.
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, biocidin
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