I am wondering if anyone might be able to help me figure out which questions I need to be asking...
I have not had a diagnosis of CFS but fatigue has definitely been a huge part of my journey. I have 2 diagnosed autoimmune conditions and one other suspected autoimmune issue. I have been searching for folks to possibly have wisdom to help me and I was so happy when I came across this forum.
I started strict gluten free eating 12 years ago due to suspected celiac. I have been using a Strict autoimmune protocol (AIP) diet for almost 2 years to address MS-diagnosed 3/2014. I Had to reduce organ meat due to Hereditary Hemochromatosis diagnosis/high iron in 8/2015. I Also had to reduce TH2 stimulating compounds after Hashimoto's dx in 9/2015 b/c they were triggering Hashi's flares. I do not take any immune-suppressing drugs and no steroids. I take Vitamin D3 and also natural desiccated thyroid medicine which help a lot. When I have flares, I deal with fatigue and it can be very debilitating, however In general, I am doing quite well and have been able to reduce 95% of my MS symptoms with nutrition, gentle exercise, stress reduction and physical therapy.
In the last few months, I have really been focusing on gut health in addition to the other things that I do for my health. In addition to taking probiotics I ferment a lot of veggies and drinks. We do vegetable ferments, ginger bug and kombucha here at home. So, I have been taking Orthomolecular OrthoBiotic powder probiotic as a filler in my thyroid medication without a problem (just a tiny bit of reaction to the tiny bit of cellulose that they use). I also take some on most days that is separate from the filler in my thyroid meds. The amount that I use is probably something like .25 or .5 billion CFU's per day (not a lot, I know). It includes
Bifidobacterium bifidum
Bifidobacterium lactis
Lactobacillus acidopholus
Lactobacillus paracasei
Lactobacillus plantarum
Lactobacillus rhamnosis
Saccharomyces boulardii
I do well with the Orthomolecular at very small doses so far although I can tell I am reacting a bit to the little bit of filler in this product. I cannot take anything with cellulose in it b/c I react to the cellulose very badly (neurological issues, mood changes, and fatigue and vertigo symptoms).
Well, I have been concerned about the fillers in the Ortho Molecular probiotic and I found a probiotic by Gutpro that has no fillers at all. It is way more concentrated and they have special measuring spoons to make sure you don't take too much. I took a tiny amount that was about 3 billion CFU's. It includes the following strains.
Bifidobacterium bifidum
Bifidobacterium breve
Bifidobacterium infantis
Bifidobacterium lactis
Bifidobacterium longum
Lactobacillus gasseri
Lactobacillus plantarum
Lactobacillus salivarius
Day 1: Within 2 hours of my first dose of the Gutpro, I experienced visual disturbances in my right eye that included flashing lights, colors, and blocked vision. The disturbance lasted for 30 minutes and then went completely away and my vision was restored.
Day 2: The 2nd day that I took Gutpro (I took it in the evening each time)... the following day mid-day, my MS - wobbly leg, tremors and shakes returned to a mild degree. then, by the evening the symptoms had dissipated.
Day 3: I took the Gutpro probiotic the third evening and then the following day in the morning I could not walk well, wobbly leg, tremors, etc. Very intense and very puzzling. Because the symptoms were so intense (and because this strategy had worked previously when I had TH2 triggered reactions - probiotics being an immune modulating compound...they seemed to work previously) I took some of the orthomolecular probiotic (the one that I have not had reactions to) to try to help my immune system/central nervous system calm down. It definitely helped a lot. By 3pm that 4th day, I had no symptoms and went for a walk with my son without a cane or any assistance.
During these 3 days, I did not change anything else. Food, thyroid meds, vitamin D, all the same.
Day 4: I stopped taking the Gutpro probiotic and took the old one (Orthomolecular) about 3 times. I began to have the neurological symptoms again.
Please, Could you help me understand why my reaction was neurological? I am trying to do my own research to understand. I do believe that probiotics are helpful and I definitely feel better with the orthomolecular brand (this one is also much less concentrated/potent than the Gutpro - not sure if that had something to do with it). Why would my reaction be so drastic? And why would my symptoms be neurological?
Thank you so much. I am grateful for any help or suggestions or ideas that you might have. I am also open to ideas on where to post this if this is not the best place to share/ask.
Thanks, Julia
I have not had a diagnosis of CFS but fatigue has definitely been a huge part of my journey. I have 2 diagnosed autoimmune conditions and one other suspected autoimmune issue. I have been searching for folks to possibly have wisdom to help me and I was so happy when I came across this forum.
I started strict gluten free eating 12 years ago due to suspected celiac. I have been using a Strict autoimmune protocol (AIP) diet for almost 2 years to address MS-diagnosed 3/2014. I Had to reduce organ meat due to Hereditary Hemochromatosis diagnosis/high iron in 8/2015. I Also had to reduce TH2 stimulating compounds after Hashimoto's dx in 9/2015 b/c they were triggering Hashi's flares. I do not take any immune-suppressing drugs and no steroids. I take Vitamin D3 and also natural desiccated thyroid medicine which help a lot. When I have flares, I deal with fatigue and it can be very debilitating, however In general, I am doing quite well and have been able to reduce 95% of my MS symptoms with nutrition, gentle exercise, stress reduction and physical therapy.
In the last few months, I have really been focusing on gut health in addition to the other things that I do for my health. In addition to taking probiotics I ferment a lot of veggies and drinks. We do vegetable ferments, ginger bug and kombucha here at home. So, I have been taking Orthomolecular OrthoBiotic powder probiotic as a filler in my thyroid medication without a problem (just a tiny bit of reaction to the tiny bit of cellulose that they use). I also take some on most days that is separate from the filler in my thyroid meds. The amount that I use is probably something like .25 or .5 billion CFU's per day (not a lot, I know). It includes
Bifidobacterium bifidum
Bifidobacterium lactis
Lactobacillus acidopholus
Lactobacillus paracasei
Lactobacillus plantarum
Lactobacillus rhamnosis
Saccharomyces boulardii
I do well with the Orthomolecular at very small doses so far although I can tell I am reacting a bit to the little bit of filler in this product. I cannot take anything with cellulose in it b/c I react to the cellulose very badly (neurological issues, mood changes, and fatigue and vertigo symptoms).
Well, I have been concerned about the fillers in the Ortho Molecular probiotic and I found a probiotic by Gutpro that has no fillers at all. It is way more concentrated and they have special measuring spoons to make sure you don't take too much. I took a tiny amount that was about 3 billion CFU's. It includes the following strains.
Bifidobacterium bifidum
Bifidobacterium breve
Bifidobacterium infantis
Bifidobacterium lactis
Bifidobacterium longum
Lactobacillus gasseri
Lactobacillus plantarum
Lactobacillus salivarius
Day 1: Within 2 hours of my first dose of the Gutpro, I experienced visual disturbances in my right eye that included flashing lights, colors, and blocked vision. The disturbance lasted for 30 minutes and then went completely away and my vision was restored.
Day 2: The 2nd day that I took Gutpro (I took it in the evening each time)... the following day mid-day, my MS - wobbly leg, tremors and shakes returned to a mild degree. then, by the evening the symptoms had dissipated.
Day 3: I took the Gutpro probiotic the third evening and then the following day in the morning I could not walk well, wobbly leg, tremors, etc. Very intense and very puzzling. Because the symptoms were so intense (and because this strategy had worked previously when I had TH2 triggered reactions - probiotics being an immune modulating compound...they seemed to work previously) I took some of the orthomolecular probiotic (the one that I have not had reactions to) to try to help my immune system/central nervous system calm down. It definitely helped a lot. By 3pm that 4th day, I had no symptoms and went for a walk with my son without a cane or any assistance.
During these 3 days, I did not change anything else. Food, thyroid meds, vitamin D, all the same.
Day 4: I stopped taking the Gutpro probiotic and took the old one (Orthomolecular) about 3 times. I began to have the neurological symptoms again.
Please, Could you help me understand why my reaction was neurological? I am trying to do my own research to understand. I do believe that probiotics are helpful and I definitely feel better with the orthomolecular brand (this one is also much less concentrated/potent than the Gutpro - not sure if that had something to do with it). Why would my reaction be so drastic? And why would my symptoms be neurological?
Thank you so much. I am grateful for any help or suggestions or ideas that you might have. I am also open to ideas on where to post this if this is not the best place to share/ask.
Thanks, Julia