85% recovered

Nanni

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I think we’re always unsure to say how much we’ve recovered. The quick undoing of all our improvements can sneak up and slam us back down for over doing it. So if I describe the 85% improvement I’ve been experienceing lately it’s with the asterisk * today. But it’s so encouraging to feel like I’ve reached a new normal that is mostly reliable if I keep up my end of the bargain. Aggressive resting, stress management, self control around diet and not over doing it are the have to’s

. Overall I attribute my biggest leaps to adhearing to the above and also doing some gentle exercise as well. The plan that worked for me Is striking a balance between anti microbials and probiotics. I follow a methylation protocol which includes a methyl multi supplement and sruff for mthfr which I discovered I have through 23 and Me. Dr. Lynch is very helpful. That was an important piece of the puzzle. Another big deal has been healing my endocrine system, adrenal fatigue and also hormone balance, testosterone etc. Now I take almost no thyroid medication after 30 years of dealing with a very difficult low t3 problem. Things like hydrotherapy, modified fasting have helped a lot but it’s taken years of slowly detoxing And then just really staying on top of some other stuff like gastroparesis and not having a gallbladder which requires a strict diet. I’m so very grateful for this forum and all of you that give so much of yourselves. I really can’t imagine what would have happened to me. Ten years ago i was suicidal and thankfully someone knew just how to reach me. She asked me this. “ we know this illness causes brain inflammation. Can you trust your thoughts when they’ve been hi jacked by an illness.” The thought of living with the pain was very hard to accept. To that she said when has anything in your life stayed the same. And of course she was right. 10 years later, I’m so grateful for all the support, all I’ve learned, and how much sweeter life is. Heart felt thanks.
 

Booble

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That's terrific. Well done!

PS. Modified fasting? That's a no-no for me. Continuous eating necessary for me not to crash. Boy, that makes me sound like a pig. What I mean is ingesting something regularly to, presumably, keep blood sugar up.
 

Davsey27

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I think we’re always unsure to say how much we’ve recovered. The quick undoing of all our improvements can sneak up and slam us back down for over doing it. So if I describe the 85% improvement I’ve been experienceing lately it’s with the asterisk * today. But it’s so encouraging to feel like I’ve reached a new normal that is mostly reliable if I keep up my end of the bargain. Aggressive resting, stress management, self control around diet and not over doing it are the have to’s

. Overall I attribute my biggest leaps to adhearing to the above and also doing some gentle exercise as well. The plan that worked for me Is striking a balance between anti microbials and probiotics. I follow a methylation protocol which includes a methyl multi supplement and sruff for mthfr which I discovered I have through 23 and Me. Dr. Lynch is very helpful. That was an important piece of the puzzle. Another big deal has been healing my endocrine system, adrenal fatigue and also hormone balance, testosterone etc. Now I take almost no thyroid medication after 30 years of dealing with a very difficult low t3 problem. Things like hydrotherapy, modified fasting have helped a lot but it’s taken years of slowly detoxing And then just really staying on top of some other stuff like gastroparesis and not having a gallbladder which requires a strict diet. I’m so very grateful for this forum and all of you that give so much of yourselves. I really can’t imagine what would have happened to me. Ten years ago i was suicidal and thankfully someone knew just how to reach me. She asked me this. “ we know this illness causes brain inflammation. Can you trust your thoughts when they’ve been hi jacked by an illness.” The thought of living with the pain was very hard to accept. To that she said when has anything in your life stayed the same. And of course she was right. 10 years later, I’m so grateful for all the support, all I’ve learned, and how much sweeter life is. Heart felt thanks.
Congrats
 

Martial

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I think we’re always unsure to say how much we’ve recovered. The quick undoing of all our improvements can sneak up and slam us back down for over doing it. So if I describe the 85% improvement I’ve been experienceing lately it’s with the asterisk * today. But it’s so encouraging to feel like I’ve reached a new normal that is mostly reliable if I keep up my end of the bargain. Aggressive resting, stress management, self control around diet and not over doing it are the have to’s

. Overall I attribute my biggest leaps to adhearing to the above and also doing some gentle exercise as well. The plan that worked for me Is striking a balance between anti microbials and probiotics. I follow a methylation protocol which includes a methyl multi supplement and sruff for mthfr which I discovered I have through 23 and Me. Dr. Lynch is very helpful. That was an important piece of the puzzle. Another big deal has been healing my endocrine system, adrenal fatigue and also hormone balance, testosterone etc. Now I take almost no thyroid medication after 30 years of dealing with a very difficult low t3 problem. Things like hydrotherapy, modified fasting have helped a lot but it’s taken years of slowly detoxing And then just really staying on top of some other stuff like gastroparesis and not having a gallbladder which requires a strict diet. I’m so very grateful for this forum and all of you that give so much of yourselves. I really can’t imagine what would have happened to me. Ten years ago i was suicidal and thankfully someone knew just how to reach me. She asked me this. “ we know this illness causes brain inflammation. Can you trust your thoughts when they’ve been hi jacked by an illness.” The thought of living with the pain was very hard to accept. To that she said when has anything in your life stayed the same. And of course she was right. 10 years later, I’m so grateful for all the support, all I’ve learned, and how much sweeter life is. Heart felt thanks.
I'm extremely thrilled for you! Thanks for sharing your story and I'm so glad you held through 💙
 

LINE

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The plan that worked for me Is striking a balance between anti microbials and probiotics.

Good job. This is my near recovery story, Putting constant pressure on the infections and detoxification is what works.
 
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Hello
Thats great and i do believe in recovery or remission.
How where you diagnosed , wich Criteria? Wich symptoms did you have and how long have you been sick ?
 
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So if I describe the 85% improvement I’ve been experienceing lately it’s with the asterisk * today.
Congrats on all this!

I recall writing down: 80% would be Great....I'd be grateful to operate at an 80% level.

Continuous eating necessary for me not to crash. Boy, that makes me sound like a pig. What I mean is ingesting something regularly to, presumably, keep blood sugar up.
same here. I don't actually eat that many calories, but feel I am often nibbling or needing to add fuel. If I go out, how will I make it the next two hours- seems to often transpire.

When my grandaughter was here, I was grabbing those toddler squeeze meals- so I just have something in my purse.
 
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I was also just thinking 80% would be great! At least for a while, while I continue to pursue full recovery, whatever that means. I think I've been all or nothing for a long time in the way I picture recovery. But 80% better than where I am right now, which is already majorly better in some ways than I was before (and in some ways worse), would be amaaaaaaazing. Congratulations whole heartedly!
 

gbells

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I follow a methylation protocol which includes a methyl multi supplement and sruff for mthfr which I discovered I have through 23 and Me. Dr.
I'm curious, do you have high MCV on the CBC blood test? I have had borderline high values for years due to a heterozygous MTHFR gene defect and it never responded to methyl folate supplementation. I read it is also caused by B12 so I'm going to try adding activated B12 and a higher dose of activated folate to my regimen and see if it helps.
 

Nanni

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That's terrific. Well done!

PS. Modified fasting? That's a no-no for me. Continuous eating necessary for me not to crash. Boy, that makes me sound like a pig. What I mean is ingesting something regularly to, presumably, keep blood sugar up.
Sorry it took me so long to respond. I kind of did what I said I wouldn’t do, get out ahead of myself. I had a bit of a set back with my stomach but I’m getting back.

You reminded me of the most important ingredient of my improvements, trusting myself. I think all of us have very individual journeys and we have to honor wherever that takes us. I think our bodies have a wisdom that we’re not fully aware of and there is more help around than we realize. This may sound silly but for instance I would go on this forum and follow a thread I accidentally found and discover something completely unexpected and vital for my improvements. The fasting gives my stomach a break. Gastroparesis is tough. And I also had to take electrolytes when i fasted. That’s huge!
 

Nanni

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Hello
Thats great and i do believe in recovery or remission.
How where you diagnosed , wich Criteria? Wich symptoms did you have and how long have you been sick ?
Sorry it took me so long to respond. I did get ahead of myself a bit and had stomach issues come up.

In answer to your questions: I self diagnosed using the scale that was on the NAME website, which I see is no longer. I think Fujita scale. My doctor also did test of exclusion.

I had the classic onset, got a flu that never went away. Within three weeks I had to close my practice and dream career, a successful equine assisted psychotherapy practice. I couldn’t believe it but it was impossible for me to get out of bed. I still can’t believe how much fatigue can hurt. I haven’t had some symptoms like that for awhile although the number one indicator I’m doing too much, that need to push.

Initially my cortisol was upside down literally, down during the day up at night. I couldn’t sleep well for years. Of course rest didn’t help but sleeping was critical. Healing my adrenals was huge and balancing my hormones. The orthistatic intolerance used to be bad and I do still have to lie down but for just short breaks. The brain fog has been getting better as I improve but I haven’t taken anything for it. I still have a fair amount of body pain that seems the most difficult symptom I’m dealing with along with my stomach.

I take Gaia products for the anti microbials, oil of oregano, olive leaf, garlic, vitamin c but in moderation or I detox too much. I need to get back to my hydrotherapy. I take stuff for my mthfr, magnesium oil, probiotics, aloe Vera, licorice which has helped my thyroid incredibly. I had my gallbladder removed, and have gastroparesis so I struggle with constipation. My diet choices are very limited so big disadvantage there. I’ve seen my husband heal his leaky gut with diet choices like eating oatmeal and berries every morning.

I forgot about the treatment I did in the beginning that I’m sure helped. Two years of acupuncture was great but expensive. I think it’s a big reason why I started improving. And like LINE said, attack the infection and mop up with detoxing. I also am a big proponent of aggressive resting which I still do. Probably the only thing I do in extreme that is good for me.
 

Nanni

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I'm curious, do you have high MCV on the CBC blood test? I have had borderline high values for years due to a heterozygous MTHFR gene defect and it never responded to methyl folate supplementation. I read it is also caused by B12 so I'm going to try adding activated B12 and a higher dose of activated folate to my regimen and see if it helps.
I would check out Ben Lynch. It’s not easy treating mthfr. You have to have the right vitamin b and especially the right micronutrients. I take his vitamin b products and Pure’s multi methyl supplement.
 

Nanni

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@Nanni -

Could you also give a basic outline of your diet and what probiotic you use?
I’ve tried many different probiotics and not sure about any of them. I’m relying more on organic goat yogurt now. That seems more reliable. It’s tricky. I have to find a balance with gut health and the anti microbials. There’s a lot to know like incorporating prebiotics. I have many dietary limitations because of my gastroparesis otherwise I’d eat a healthy salad every day. I’m learning the key is a healthy microbiome. That’s my new focus.

I haven’t realized until recently just how much I’m affected by my stomach stuff. You think you have learned something just to find it sneak up on you from behind. The gut being our second brain is so true. Recovery is not a straight trajectory but every experience contains valuable information.
 

Wayne

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I’m relying more on organic goat yogurt now. That seems more reliable. It’s tricky. I have to find a balance with gut health and the anti microbials.
Hi @Nanni, thanks for your updates, and your insights into how you've improved. Just wanted to mention I too have experienced symptoms of gastroporesis, and recently discovered organic juice powders are very helpful for me.

Within two days of making smoothies with them, the "normal" clearing of my throat improved dramatically, with it becoming very infrequent, and very easy. Some of the juice powders I've used are wheatgrass, celery, beet, pineapple, tart cherry, etc. Many to choose from and experiment with.

Also, I once ran across a testimonial by a woman who had the experience of her difficult gastroporesis clearing up within two days of starting HBOT therapy. Go figure!

Two years of acupuncture was great but expensive. I think it’s a big reason why I started improving.
I went to an acupuncturist who had reasonable fees, and who was also enthusiastic about showing me how to do self-acupuncture. He showed me one particular combination of 6 acupuncture points that has a particular name to it (don't recall what it is), and said it constituted about 70% of acupuncture!

They're points you've probably had done: 1) between the big toe and the next toe, about 1 inch up the foot; 2) on the inside of the ankle, very close to the achilles heel; and 3) the soft fleshy spot between the thumb and index finger.

The plan that worked for me Is striking a balance between anti microbials and probiotics.
Since you've had such good success with antimicrobials, you may find ozone therapy of interest. I myself plan to invest about $2,000 in a home ozone machine, because of the many benefits it offers. The book The Ozone Miracle I mentioned in the following post is a great introduction to comprehensive ozone therapy. -- Thanks again for your posts, and congratulations on your improvements! :thumbsup:

Ozone Apparently Effective for Treating Interstitial Cystitis
 
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Nanni

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Hi @Nanni, thanks for your updates, and your insights into how you've improved. Just wanted to mention I too have experienced symptoms of gastroporesis, and recently discovered organic juice powders are very helpful for me.

Within two days of making smoothies with them, the "normal" clearing of my throat improved dramatically, with it becoming very infrequent, and very easy. Some of the juice powders I've used are wheatgrass, celery, beet, pineapple, tart cherry, etc. Many to choose from and experiment with.

Also, I once ran across a testimonial by a woman who had the experience of her difficult gastroporesis clearing up within two days of starting HBOT therapy. Go figure!



I went to an acupuncturist who had reasonable fees, and who was also enthusiastic about showing me how to do self-acupuncture. He showed me one particular combination of 6 acupuncture points that has a particular name to it (don't recall what it is), and said it constituted about 70% of acupuncture!

They're points you've probably had done: 1) between the big toe and the next toe, about 1 inch up the foot; 2) on the inside of the ankle, very close to the achilles heel; and 3) the soft fleshy spot between the thumb and index finger.



Since you've had such good success with antimicrobials, you may find ozone therapy of interest. I myself plan to invest about $2,000 in a home ozone machine, because of the many benefits it offers. The book The Ozone Miracle I mentioned in the following post is a great introduction to comprehensive ozone therapy. -- Thanks again for your posts, and congratulations on your improvements! :thumbsup:

Ozone Apparently Effective for Treating Interstitial Cystitis
Great info thanks. Yes I remember those acupuncture spots. I’m inspired to find someone who could teach me those 6 spots. And I’d be interested in knowing how you have improved with the ozone therapy.
 

drob31

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That's terrific. Well done!

PS. Modified fasting? That's a no-no for me. Continuous eating necessary for me not to crash. Boy, that makes me sound like a pig. What I mean is ingesting something regularly to, presumably, keep blood sugar up.
Blood sugar stability is tightly intertwined with thyroid hormone, so that makes sense
 

Nanni

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That's terrific. Well done!

PS. Modified fasting? That's a no-no for me. Continuous eating necessary for me not to crash. Boy, that makes me sound like a pig. What I mean is ingesting something regularly to, presumably, keep blood sugar up.
I found the 16/8 pattern of intermittent fasting has been pretty easy on my blood sugar. I don’t eat past 6 PM . I drink electrolytes in the morning and delay breakfast till 10:00. Even a few sips on a shake wouldn’t hurt. It’s about letting your system have a break so a protein drink won’t be a problem. And if you want to lose weight boy it’s pretty amazing. I didn’t care about that and haven’t been eating differently and I’ve lost twenty pounds. Now that I’m getting my gut under control I’m feeling really good.