Apparently it works in spite of it's issues, kind of like Asacol being used to treat MC, despite it's lactose ingredient.
Tex
Trouble in Sweden
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Zizzle, I found the article about folic acid interesting. A research group from Europe discovered that people with FSHD have hypomethylation of DNA, which is caused by a folic acid and vitamin B-12 deficiency. Could it be that any folic acid is consumed by the bacteria before in enters the cells? Jon
Interesting...could unfriendly bacteria be living off some of our vital nutrients, like folic acid, B-12 and even Vit D, making it seem as though we are terribly deficient, despite supplementation? And the more we supplement, the more we feed these toxic inhabitants? Many kids with autism are tested for MTHFR gene mutations and defects of methylation processes. I'm not sure what it means for MC and other AI diseases though.
A big-name food allergy researcher stated in a lecture that folic acid supplementation of grains and prenatal vitamins immediately preceeded the epidemic of childhood food allergies. What's the deal with folic acid???
A big-name food allergy researcher stated in a lecture that folic acid supplementation of grains and prenatal vitamins immediately preceeded the epidemic of childhood food allergies. What's the deal with folic acid???
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Zizzle, At a medical conference in Cambridge Mass researchers from Europe spoke about the methylation of DNA. They found that individuals with hypomethylation had a folic acid and B-12 deficiency. They did a study using folic acid and B-12 supplements and found no improvement in methylation. So, the question is " what happened to the supplements" They had no answer. Methylation protects the DNA from virus's and bacteria's that cause mutations. When, you look at the ingredient labels an most cereals they are supplemented with the daily amount of folic acid and B-12. This was done to help prevent neural defects. Jon
An update...
I finished my 3-day course of Bactrim on Tuesday, and I'm still enjoying perfect, textbook, normans. If this isn't an indicator that my MC symptoms are caused by an intestinal bacteria (probably in the e.coli family), I don't know what is. Unfortunately, my DM rash is flaring a bit. Not spreading, but the existing rash is redder and much more itchy!! Could killng off some of my good bacteria be worsening the rash? What a double-edged sword!!
I see my rheumy on Monday. I need to do something different, but I don't know what? I was ready to try pulsed antibiotics (like minocycline), and was ready to find an MD that would prescribe the protocol. The rash felt milder while on the Bactrim. Maybe I needed a longer course to see results? I'm so confused!!!
I finished my 3-day course of Bactrim on Tuesday, and I'm still enjoying perfect, textbook, normans. If this isn't an indicator that my MC symptoms are caused by an intestinal bacteria (probably in the e.coli family), I don't know what is. Unfortunately, my DM rash is flaring a bit. Not spreading, but the existing rash is redder and much more itchy!! Could killng off some of my good bacteria be worsening the rash? What a double-edged sword!!
I see my rheumy on Monday. I need to do something different, but I don't know what? I was ready to try pulsed antibiotics (like minocycline), and was ready to find an MD that would prescribe the protocol. The rash felt milder while on the Bactrim. Maybe I needed a longer course to see results? I'm so confused!!!1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle,
I'm not saying that this is your problem, but consider this:
Bactrim is no ordinary antibiotic. It's a macrolide. Do you know what macrolides are used to treat? That's right — they're used to treat H. pylori infections and most importantly, MAP infections.
I'm sure you're familiar with MAP, but for anyone reading this who is not, MAP stand for Mycobacterium avium paratuberculosis, which many of us suspected may be involved in the development of Crohn's disease and possibly other types of IBD. MAP are responsible for Johnne's disease in livestock, and can be transmitted in milk, even pasteurized milk. The physical damage to the intestines, and the clinical symptoms of Johnne's disease in animals, are virtually identical to the symptoms of Crohn's disease in humans. MAP bacteria are extremely difficult to detect, because of their unique ability to hide in infected tissue.
OK, to get back to your case, as you know, treating either H. pylori or MAP infections is extremely difficult, and requires much more than a simple short course of a single antibiotic. The short course of Bactrim that you had would do little more than to make them mad. Maybe that's what happened.
Maybe the Bactrim destroyed most of any competing (controlling) bacteria, and simply irritated an H. pylori or MAP infection, and since both of them are opportunistic bacteria who are always hanging around, looking for an advantage to allow them to gain some turf, maybe you had a rebound effect due to the Bactrim.
True to their opportunistic behavior, both H. pylori and MAP are somewhat common problems for HIV patients. And Bactrim is frequently used as part of a treatment program for such patients.
I have a hunch that a lot of us may carry MAP bacteria, but they usually lay low, unless we kick sand in their eye, or they see an opportunity that they deem to be too good to pass up. Again, this just a thought — just something to consider.
Tex
I'm not saying that this is your problem, but consider this:
Bactrim is no ordinary antibiotic. It's a macrolide. Do you know what macrolides are used to treat? That's right — they're used to treat H. pylori infections and most importantly, MAP infections.
I'm sure you're familiar with MAP, but for anyone reading this who is not, MAP stand for Mycobacterium avium paratuberculosis, which many of us suspected may be involved in the development of Crohn's disease and possibly other types of IBD. MAP are responsible for Johnne's disease in livestock, and can be transmitted in milk, even pasteurized milk. The physical damage to the intestines, and the clinical symptoms of Johnne's disease in animals, are virtually identical to the symptoms of Crohn's disease in humans. MAP bacteria are extremely difficult to detect, because of their unique ability to hide in infected tissue.
OK, to get back to your case, as you know, treating either H. pylori or MAP infections is extremely difficult, and requires much more than a simple short course of a single antibiotic. The short course of Bactrim that you had would do little more than to make them mad. Maybe that's what happened.
Maybe the Bactrim destroyed most of any competing (controlling) bacteria, and simply irritated an H. pylori or MAP infection, and since both of them are opportunistic bacteria who are always hanging around, looking for an advantage to allow them to gain some turf, maybe you had a rebound effect due to the Bactrim.
True to their opportunistic behavior, both H. pylori and MAP are somewhat common problems for HIV patients. And Bactrim is frequently used as part of a treatment program for such patients.
I have a hunch that a lot of us may carry MAP bacteria, but they usually lay low, unless we kick sand in their eye, or they see an opportunity that they deem to be too good to pass up. Again, this just a thought — just something to consider.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Zizzle,
I forgot to mention that the reason why I brought all of this up is because H. pylori is associated with rash. Thanks Jon, for reminding me. I tend to get sidetracked sometimes, and forget why I started a post in the first place.
Tex
I forgot to mention that the reason why I brought all of this up is because H. pylori is associated with rash. Thanks Jon, for reminding me. I tend to get sidetracked sometimes, and forget why I started a post in the first place.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well my mom has been dealing with H.Pylori for a few years, and most residents of Latin America have it, but my bloodwork was negative back when I was diagnosed with LC. My Genova Labs complete stool analysis also did not turn up any abnormal GI infections, to our surprise. Is there value in re-testing?
I saw my rheumy today who suggested I jump to 15 mgs prednisone for 2 weeks to accelerate the healing of the rash, which is at about 30% better than when I was at my worst last year. Crazy that it's this severe despite being on prednisone and plaquenil!!! WTF?!? Going from 6 mg to 10 mg at least healed the sores that were developing, but the rash continues to spread. I wish I could say it's urticaria or rosacea or eczema, but the rash of DM is very unique in its presentation, and very resistant to treatment. I'm actually lucky it responds to prednisone at all!
He suggested if this doesn't work, we may "change agents" and start CellCept or Imuran. I am definitely not ready for that. Ugh.
I asked if there was any bleeding risk of upping fish oil, and he said no, other than the bruising I'm already experiencing. And thanks to Plaquenil, past bruises become permanent grey shadows on your skin.
I was reading an Arthritis Foundation magazine in his office that recommended the following supplements for RA (I'm sure it applies to other AI diseases). Any thoughts on adding these to my limited supplement regimen of Vit D, B-complex, cal-mag and [starting again] reishi?
Cat's Claw (anti-inflammatory that inhibits TNF).
Fish oil (omega-3s block inflammatory cytokines. I think the Asthazanthin softgels I'm taking don't really agree with me. I'm thinking of going old-school and taking cod liver oil liquid my the tablespoon like my mom used to force on me.
GLA: Evening primrose, borage, black currant oils. They are Omega-6, but I guess they are anti-inflammatory
Ginger: Has anti-inflammatory properties similar to NSAIDS.
Of course going completely grain free is an option I frequently consider, but I'm fearful that I can't sustain it, and once I stop, eating grains again will cause an even bigger flare.
I told him about my Bactrim experience, and I asked what he thought about the contentious issue of pulsed antibiotic protocols. I mentioned I thought my body was fighting an unfriendly inhabitant. He did not disagree, but said I should consult my gastroenterologist (which I don't have) of I want to try antibiotics. He said they only prescribe them for scleroderma patients with slow motility issues.
He tested my muscle enzymes, chemistry and thyroid today. Depite my hip and upper thigh weakness, he believes I still don't have muscle involvement, just issues related to my joint hypermobility in the pelvis. I think I'm also prone to steroid-induced myopathy. The weakness was far more pronounced at higher doses of prednisone. I'm fine with that. I don't want a muscle biopsy!
I swam at our pool last night for the first time without a rashguard on. It was a quick final dip in the pool with the kids, and I thought the rash was sufficiently light pink that people wouldn't notice. Some people clearly did, especially the lifeguards. So embarrassing...I'm like a leper.
I saw my rheumy today who suggested I jump to 15 mgs prednisone for 2 weeks to accelerate the healing of the rash, which is at about 30% better than when I was at my worst last year. Crazy that it's this severe despite being on prednisone and plaquenil!!! WTF?!? Going from 6 mg to 10 mg at least healed the sores that were developing, but the rash continues to spread. I wish I could say it's urticaria or rosacea or eczema, but the rash of DM is very unique in its presentation, and very resistant to treatment. I'm actually lucky it responds to prednisone at all!
He suggested if this doesn't work, we may "change agents" and start CellCept or Imuran. I am definitely not ready for that. Ugh.
I asked if there was any bleeding risk of upping fish oil, and he said no, other than the bruising I'm already experiencing. And thanks to Plaquenil, past bruises become permanent grey shadows on your skin.
I was reading an Arthritis Foundation magazine in his office that recommended the following supplements for RA (I'm sure it applies to other AI diseases). Any thoughts on adding these to my limited supplement regimen of Vit D, B-complex, cal-mag and [starting again] reishi?
Cat's Claw (anti-inflammatory that inhibits TNF).
Fish oil (omega-3s block inflammatory cytokines. I think the Asthazanthin softgels I'm taking don't really agree with me. I'm thinking of going old-school and taking cod liver oil liquid my the tablespoon like my mom used to force on me.
GLA: Evening primrose, borage, black currant oils. They are Omega-6, but I guess they are anti-inflammatory
Ginger: Has anti-inflammatory properties similar to NSAIDS.
Of course going completely grain free is an option I frequently consider, but I'm fearful that I can't sustain it, and once I stop, eating grains again will cause an even bigger flare.
I told him about my Bactrim experience, and I asked what he thought about the contentious issue of pulsed antibiotic protocols. I mentioned I thought my body was fighting an unfriendly inhabitant. He did not disagree, but said I should consult my gastroenterologist (which I don't have) of I want to try antibiotics. He said they only prescribe them for scleroderma patients with slow motility issues.
He tested my muscle enzymes, chemistry and thyroid today. Depite my hip and upper thigh weakness, he believes I still don't have muscle involvement, just issues related to my joint hypermobility in the pelvis. I think I'm also prone to steroid-induced myopathy. The weakness was far more pronounced at higher doses of prednisone. I'm fine with that. I don't want a muscle biopsy!
I swam at our pool last night for the first time without a rashguard on. It was a quick final dip in the pool with the kids, and I thought the rash was sufficiently light pink that people wouldn't notice. Some people clearly did, especially the lifeguards. So embarrassing...I'm like a leper.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
I would assume that H. pylori populations fluctuate according to stomach/immune system conditions, but I have no idea whether another test would be worthwhile. 
I have to agree — that is one persistent rash. It seems as though you've been fighting it forever. There has to be something in your diet/environment that is driving it more aggressively than your treatment can suppress it.
I don't know enough about those supplements to be able to offer any worthwhile advice on using them. Hopefully someone else can offer some insight on them.
Tex
I have to agree — that is one persistent rash. It seems as though you've been fighting it forever. There has to be something in your diet/environment that is driving it more aggressively than your treatment can suppress it.
I don't know enough about those supplements to be able to offer any worthwhile advice on using them. Hopefully someone else can offer some insight on them.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
God Zizzle. I am so sorry that you are going through all of this! I wish I also had something useful to add. I know my father takes Ginger for inflammation and swears by it. I understand you not wanting to go grain free, but what if it worked!? If your rash subsided, it might be enough incentive to stick with it....just a thought.
Leah
Leah
I'm adding fresh ginger to my morning smoothies and upping my fish oil. One thing I totally stopped when this flare started was the reishi prescribed by my acupuncturist, who I'm now seeing every 2 weeks. Maybe that's a reason the rash healed so well the first time, and relapsed so badly when I stopped? If it's that simple, I'll eat my shoe, and congratulate the Chinese for having a cure for one of the most treatment-resistant rashes known to man.
I've decided not to bump up to 15 mgs pred. The rash is changing and lightening in some areas, so I'm hoping with the UTI episode and travel over, I can make some real progress. I'm severely limiting corn, GF oats and quinoa, and cutting back on rice too. They were basically the only grains I had left. I plan to spend the fall eating squashes for carbs.
I've had D for 2 days after eating new Pepperidge Farms and Nabisco brand GF rice crackers. I was so excited to see mainstream GF crackers at Target (and under $3!), I had to indulge. Maybe they're not so GF after all? The labels didn't say anything about being made in a GF facility versus shared equipment, which I found curious. They are not required to disclose this? I also made a "safe" dinner of grass-fed steak, stir-fried bukchoy and baked french fries. I added sesame oil to the bukchoy, despite my supposed intolerance. I guess I confirmed the sesame intolerance.
I've decided not to bump up to 15 mgs pred. The rash is changing and lightening in some areas, so I'm hoping with the UTI episode and travel over, I can make some real progress. I'm severely limiting corn, GF oats and quinoa, and cutting back on rice too. They were basically the only grains I had left. I plan to spend the fall eating squashes for carbs.
I've had D for 2 days after eating new Pepperidge Farms and Nabisco brand GF rice crackers. I was so excited to see mainstream GF crackers at Target (and under $3!), I had to indulge. Maybe they're not so GF after all? The labels didn't say anything about being made in a GF facility versus shared equipment, which I found curious. They are not required to disclose this? I also made a "safe" dinner of grass-fed steak, stir-fried bukchoy and baked french fries. I added sesame oil to the bukchoy, despite my supposed intolerance. I guess I confirmed the sesame intolerance.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle,
Regarding the reishi, one and a third billion Chinese couldn't all be wrong.
Tex
Regarding the reishi, one and a third billion Chinese couldn't all be wrong.
No, that's not in the regulations. Most manufacturers add that line just to cover their butts in case of a cross-contamination issue.Zizzle wrote:They are not required to disclose this?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.