xchocoholic
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I just realized the other day that over the last 8 1/2 years I've come up with some strategies that appear to work for me.
Finally
Not that I've "cured" myself but my symptoms are mostly under control.
I still have OI (oh and pots), pem and chronic hypoglycemia but that's nothing compared to the list I had from Jan 1990- early 2005. AND I don't need to frantically google medical terminolgy anymore.
My life was changed for the better when apparently I developed full blown celiac disease in 2005. Eliminating food intolerances, esp gluten, helped tremendously. I'm a celiac with the DQ2 gene.
These are coping tools including supplements, diet, meds and lifestyle changes. I'm curious about how many of these strategies, pwcs have in common.
There's no right or wrong answer here. As individuals our paths have all been different based on individual health concerns, available medical care, personalities and finances.
I'll start.
Upon waking up in the morning, 20 minutes before getting out of bed, I take
1 Himalaya liver care and 1-2 Dex4 dextrose tablets. Sometimes I fall back to sleep for 1-2 hours after taking these.
After getting up, I take 2 DGL and prepare breakfast. Just prior to eating I take Enzymedica digestive enzymes.
After eating, I take 50 mg zinc. And lay down to recover from POTS / hypoperfusion. This typically takes me an hour. Digestion adds to OI.
For some reason laying down for an hour after breakfast makes my whole day better. I won't feel good all day if I don't do this.
I need DGL and digestive enzymes for all meals and snacks and take those throughout the day.
I need to lay down to completely resolve my hypoperfusion and OI but don't always get the chance. I'll be monitoring this next to see what my body's doing when I can't resolve my hypoperfusion via laying down.
To keep me going during the day, I use 1 and sometimes 2, 16 oz bottles of Vitamin water xxx total but diluted by 50% with smart water 40% and a strong antioxidant juice with cranberry (for utis) 10%.
I add calcium powder (binds to oxalates), lysine (herpes flares) and salt.
Oh and recently started taking small amounts of a caffeine pill. These don't cause the jittery feeling that coffee or tea do. Never more than 1/3 of a pill daily. My doses are still being evaluated. Smaller amounts twice a day seem to work better than taking it all at once. But never past 2 pm if I want to sleep without resorting to extra melatonin, 5htp and klonopin.
Bedtime regime includes, Natural Calm
magnesium citrate (controls constipation), lysine and salt in warm water.
Also, 5-10 mg 5htp, .1-.2? Mg melatonin, 1/4-1/2 tsp children's dye free benadryl and .125 mg klonopin (myoclonus).
I was taking Enzymedica candidase and Virastop in the mornings if I woke up feeling like food was stuck in my digestive tract but since that's my norm, taking it every nite before going to bed worked better. Food is moving thru me like it should now.
A paleo / low oxalate diet makes me feel best but due to OI, fatigue and chronic hypoglycemia isn't a reasonable option.
I'm still 85-90% paleo tho with gfcfsfcf and chemical free breads or snacks.
Still juicing mosly low oxalate fruits and veggies (no chard, spinach, kale or carrots) and removing stems to reduce oxalates.
Due to chronic hypoglycemia, there are times when I have to have something sweet NOW. Right now. This second. Lol.
DEX4 works well. Oj or coffee or tea with sugar work too. DEX4 is the most convenient.
Whew. That pretty much sums up my current regime after 8 1/2 years of research and multiple protocals. I'm assuming some of the protocals I did helped my body heal even if I didn't see a direct correlation.
Some things, mb12, adb12, p5p, b6, probiotics, fermented foods, etc, worked for awhile then started making me feel toxic or weak. I suspect chronic leaky gut means I develop intolerances to anything I ingest after awhile. Or I simply don't need these anymore. Or some supplement fillers are bad for me.
Fyi - I'm a pwc with gluten intolerance / celiac disease / neurological complications, some organ damage (history of ataxia and white lesions on brain that resolved 1-2 years post gfcfsfcf + chemical free diet) and autoimmune diseases.
The NIH states that celiacs are being misdiagnosed with cfs. I'm not sure they know about gluten sensitivity. And that many, most ?, celiacs have multiple non digestive related diagnosises.
So, what have you come up with?
Tx .. x
Finally
Not that I've "cured" myself but my symptoms are mostly under control.
I still have OI (oh and pots), pem and chronic hypoglycemia but that's nothing compared to the list I had from Jan 1990- early 2005. AND I don't need to frantically google medical terminolgy anymore.
My life was changed for the better when apparently I developed full blown celiac disease in 2005. Eliminating food intolerances, esp gluten, helped tremendously. I'm a celiac with the DQ2 gene.
These are coping tools including supplements, diet, meds and lifestyle changes. I'm curious about how many of these strategies, pwcs have in common.
There's no right or wrong answer here. As individuals our paths have all been different based on individual health concerns, available medical care, personalities and finances.
I'll start.
Upon waking up in the morning, 20 minutes before getting out of bed, I take
1 Himalaya liver care and 1-2 Dex4 dextrose tablets. Sometimes I fall back to sleep for 1-2 hours after taking these.
After getting up, I take 2 DGL and prepare breakfast. Just prior to eating I take Enzymedica digestive enzymes.
After eating, I take 50 mg zinc. And lay down to recover from POTS / hypoperfusion. This typically takes me an hour. Digestion adds to OI.
For some reason laying down for an hour after breakfast makes my whole day better. I won't feel good all day if I don't do this.
I need DGL and digestive enzymes for all meals and snacks and take those throughout the day.
I need to lay down to completely resolve my hypoperfusion and OI but don't always get the chance. I'll be monitoring this next to see what my body's doing when I can't resolve my hypoperfusion via laying down.
To keep me going during the day, I use 1 and sometimes 2, 16 oz bottles of Vitamin water xxx total but diluted by 50% with smart water 40% and a strong antioxidant juice with cranberry (for utis) 10%.
I add calcium powder (binds to oxalates), lysine (herpes flares) and salt.
Oh and recently started taking small amounts of a caffeine pill. These don't cause the jittery feeling that coffee or tea do. Never more than 1/3 of a pill daily. My doses are still being evaluated. Smaller amounts twice a day seem to work better than taking it all at once. But never past 2 pm if I want to sleep without resorting to extra melatonin, 5htp and klonopin.
Bedtime regime includes, Natural Calm
magnesium citrate (controls constipation), lysine and salt in warm water.
Also, 5-10 mg 5htp, .1-.2? Mg melatonin, 1/4-1/2 tsp children's dye free benadryl and .125 mg klonopin (myoclonus).
I was taking Enzymedica candidase and Virastop in the mornings if I woke up feeling like food was stuck in my digestive tract but since that's my norm, taking it every nite before going to bed worked better. Food is moving thru me like it should now.
A paleo / low oxalate diet makes me feel best but due to OI, fatigue and chronic hypoglycemia isn't a reasonable option.
I'm still 85-90% paleo tho with gfcfsfcf and chemical free breads or snacks.
Still juicing mosly low oxalate fruits and veggies (no chard, spinach, kale or carrots) and removing stems to reduce oxalates.
Due to chronic hypoglycemia, there are times when I have to have something sweet NOW. Right now. This second. Lol.
DEX4 works well. Oj or coffee or tea with sugar work too. DEX4 is the most convenient.
Whew. That pretty much sums up my current regime after 8 1/2 years of research and multiple protocals. I'm assuming some of the protocals I did helped my body heal even if I didn't see a direct correlation.
Some things, mb12, adb12, p5p, b6, probiotics, fermented foods, etc, worked for awhile then started making me feel toxic or weak. I suspect chronic leaky gut means I develop intolerances to anything I ingest after awhile. Or I simply don't need these anymore. Or some supplement fillers are bad for me.
Fyi - I'm a pwc with gluten intolerance / celiac disease / neurological complications, some organ damage (history of ataxia and white lesions on brain that resolved 1-2 years post gfcfsfcf + chemical free diet) and autoimmune diseases.
The NIH states that celiacs are being misdiagnosed with cfs. I'm not sure they know about gluten sensitivity. And that many, most ?, celiacs have multiple non digestive related diagnosises.
So, what have you come up with?
Tx .. x
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