Carrie Naturalway
Member
I am nearly recovered. I would say by about 2022. I don't believe I was a vibrant healthy person before me/cfs, though I did pretty good in my 20's, so I'm factoring that in. And because a series of flu shots in the late 90's, early 2000's messed up my immune system, since then I catch every virus I'm exposed to so winters are rough for me. In the summer I feel just about cured.
When I got me/CFS in January 2005 when I was 41 years old, I recognized it for what it was and began treating it right away. I probably would have been better sooner if I hadn't gone back to exercising when I felt better. It may have been the remission after the acute stage but by 2007 I was having the neurological symptoms and feeling worse. Also if I had done everything closer together it may have gone faster though it really does take a while to heal. I did many of the things as I learned.
Besides the benefit of knowing right away that I had me/CFS I also knew something about my health situation, having had seen a naturopath/nutritionist. I knew I had had mercury poisoning, low nutrient levels and the following SNPs from one parent only:
I have more than these SNPS, but here are some main ones: VDR (Vit D receptor), EPHX (detoxification), GPX1 (Glutathione, eliminates hydrogen peroxide), MTHFR (process folate, break down homocysteine). I also have the APOE e4 gene which is the bad one for Alzheimer's.
So I approached my treatment from a detox and repair/rebuild platform. I would get the bad out and put the good in and help my body to repair itself. I wouldn't take anything for symptoms, the focus was cure. If I felt crummy, too bad. Healing/Cure was all I focused on. This also helped me stay on track and do a step by step approach instead of trying this and that. I didn't take any drugs, only natural things. I'm not against drugs because they may help but I already knew that for me, a drug would add to my toxic load and since I have trouble detoxing I didn't want to take the chance that drugs would only set me back.
I did this all myself, reading everything from doctors I trusted, researching, and reading on forums like Phoenix Rising. The doctor I was seeing didn't know anything about me/cfs so I quit him in 2007. And it's too hard to find a good specialist for this, and they're too far away, there's a waiting list, they're tied to testing, I didn't want to be just a number and not have access to treatments they might not use. Of course there was the cost too. I felt like I knew my body enough and what might work, although of course a really great doctor who was clued into me would have been ideal.
1. Fixing gut. (2000-2001) I actually did this before I got the sudden onset of me/CFS because in 1999 I got candidiasis. I was treated for candidiasis and tapeworm, leaky gut and then took probiotics. I don't think there were the good probiotics then that we have now, so I had to revisit probiotics later.
2. Miracle Mineral Solution (MMS).( For 41 days morning and evening in 2008). I put this second because I think it should have been one of the first treatments. I felt like I had virus(es) circulating. I'm not sure about this but the fact that the MMS worked makes me think this was true. On the other hand, MMS is also supposed to oxidize, i e. neutralize, heavy metals so it may have been doing that or eliminating both heavy metals and virus(es)/pathogens. After doing a round of this I no longer got flu-ish feeling every other month or two months like I had been. That feeling of being poisoned was gone. Had all kinds of detox symptoms that started off intensely then tapered off until day 39 and then I felt good. It was a game changer for me, sadly I don't think it's available any more because 'they' said it was just bleach. I did research on it and found that it wasn't. It was originally created for malaria but people wouldn't take it because it made them feel sick due to the detox reaction.
3. Nutrition. (1999-present). Good quality multivitamin and mineral supplement. I was very low in nutrients probably from years of poor gut functioning. So I had to take high amounts especially magnesium and other minerals, D and B. I took and take a lot of supplements. Without testing I'm sure I'm out of balance somewhere but I had muscle testing once which confirmed what I was taking, for what that is worth. I eat an organic, whole food lectin-free diet high in good fats, moderate in protein, moderate in carbohydrates. I avoid sugar, alcohol and caffeine. Sun exposure every day even in winter. Sun is nutrition.
4. Built up endocrine system and organs. (2007-? for Standard Process supplements). I was told by a naturopath before I got CFS that I had a problem with my pituitary and that affected the rest of my endocrine system. I took glandulars with him but later I discovered Standard Process supplements with PMGs which act as a kind of blueprint to help the endocrine system rebuild. I took Pituitrophin and Simplex F. The spleen supplement was also very helpful for me. I took Immuplex which had the liver, bone, spleen and thymus PMGs. I also took pineal gland to help my sleep. And melatonin which really helped. The PMGs must have worked because I didn't have to take them anymore, once they worked, they worked for good I believe. And bioidentical hormones until I went through menopause. I felt so much better after menopause in 2014. I don't know what was wrong but it almost like I was allergic to my hormones, or the fluctuations in them were hard on me.
5 Detoxification. (2005-2023. Will do more again as needed) I knew my body doesn't detox well and that I had toxins. I was conservative about this because I didn't want to reabsorb toxins as I believe I did when I had an unexpected Mercury detox in late 2004. I do have one mercury-containing tooth filling but I decided not to get it taken out just in case the poisoning from its removal is worse than keeping it in. If I had several fillings I would get them out. Initially I did A mercury detox supplement and a chelator that were Dr. Biamonte brand (2005). I did the
Simplified Methylation Protocol (2010?) Adapted by Rich van Konyenburg (RIP dear Rich) for CFS to help the methylation block seen in pwCFS so that the body can detox better. The whey protein particularly helped with my protein assimilation problem. I was needing to have beef almost every day before this protocol helped. I also did mild detoxes over a period of years including foot detox bath (2010-2017) which some people think is a joke but it really helped. Over the years I did NACET and chlorella. Cilantro and chlorella. Tons of garlic cloves. DMSO. I did zeolite but I did not react well to that. Also remineralizing with supplements can push stored heavy metals out of bones and tissues so I just tried to take clay and other things like chlorella to bind them while I was supplementing with vitamins and minerals. Also took milk thistle to help the liver.
6. Supplements for the brain. Phospholipids in particular really helped as did supplements for the neurotransmitters serotonin and gaba. Phosphatidylserine was #1, Gaba, theanine, 5htp, tryptophan, St. John's Wort. Omega 3s, 7s. Will try the C15 fatty acid soon. They helped me think, focus (at one point it was so bad that I literally couldn't read), calm that horrible wired feeling, help with anxiety and with sleep. The sleep thing was major.
7. Reducing stress, simplifying my life, pacing. It sounds crazy but the pandemic helped me in this. I had years of tiredness and stress piled up and for the first time I was able to rest and do nothing for months. I had to quit work in 2017 for my health which helped but I needed a long period of complete rest. I needed that rest so badly but I'm sorry for anyone that suffered during this time. Before this I had gotten really good at pacing because I was afraid of overdoing it and getting worse. I also did DNRS (2023) which is a brain training program. That helped me not stress out at every little thing which is what my overworked, damaged system was doing. It really worked for stress, I am so pleased.
8. Fredd’s B-12 Protocol (2016.) This is one of the things that helped the most. Wished I'd done it sooner. I am so thankful he developed it!!
9. Antioxidants and anti-inflammatories. (1999 - present). These are supposed to be last because Rich V.K. said that pwcfs often can't handle antioxidants at first, or they don't help until you get some of the other things worked out. I took them right away because my doc said my oxidative stress was bad even before I got me/cfs. Resveratrol and Turmeric especially helped. Also grape seed extract which crosses blood brain barrier. Antioxidants for the eyes as well. Reduced glutathione and its precursors and the supplements that help it work better. And others but resveratrol and turmeric, I call them the Dynamic Duo, they work so well.
10. Healing the gut. I believe this is central to a cure and should be done first or shortly after a more pressing issue. Find a good specialist and kill the bad bacteria/parasites and heal the leaky gut, then rebuild the microbiome. I went to Dr. Biamonte in NYC because candida is his specialty, all done by phone, not in person. It worked, done, none of this halfway stuff, never had candida again. I had already worked on rebuilding my gut with him before I got CFS but now there are some good probiotics out there. General Biotics Equilibrium (2017) is like a miracle and has helped me immensely. It was the turning point in my recovery. Felt awful! for the first two weeks but after that, great!! Also helped by Prescript Assist, Femdophilus and Life Extention Florassist Mood but the effects didn't last. I took the Equilibrium in 2017 and the good effects lasted from then until 2023. It was like I got someone's gut bacteria, almost like a fecal transplant. COVID is supposed to affect the microbiome, I had a few mild cases of it, not sure if it affected my microbiome and that's why the effects of the Equilibrium stopped or why it did. Then I took Seed (2024) for a few months and that helped a lot right way with only a few days of adjustment and so far the effects are lasting. I'm going to try Pendulum Glucose Control next, not for glucose control although that might be a good thing, but for the akkermansia and butyrate producing bacteria which are supposed to be really important for the gut. Look forward to more research and findings in this area.
When I got me/CFS in January 2005 when I was 41 years old, I recognized it for what it was and began treating it right away. I probably would have been better sooner if I hadn't gone back to exercising when I felt better. It may have been the remission after the acute stage but by 2007 I was having the neurological symptoms and feeling worse. Also if I had done everything closer together it may have gone faster though it really does take a while to heal. I did many of the things as I learned.
Besides the benefit of knowing right away that I had me/CFS I also knew something about my health situation, having had seen a naturopath/nutritionist. I knew I had had mercury poisoning, low nutrient levels and the following SNPs from one parent only:
I have more than these SNPS, but here are some main ones: VDR (Vit D receptor), EPHX (detoxification), GPX1 (Glutathione, eliminates hydrogen peroxide), MTHFR (process folate, break down homocysteine). I also have the APOE e4 gene which is the bad one for Alzheimer's.
So I approached my treatment from a detox and repair/rebuild platform. I would get the bad out and put the good in and help my body to repair itself. I wouldn't take anything for symptoms, the focus was cure. If I felt crummy, too bad. Healing/Cure was all I focused on. This also helped me stay on track and do a step by step approach instead of trying this and that. I didn't take any drugs, only natural things. I'm not against drugs because they may help but I already knew that for me, a drug would add to my toxic load and since I have trouble detoxing I didn't want to take the chance that drugs would only set me back.
I did this all myself, reading everything from doctors I trusted, researching, and reading on forums like Phoenix Rising. The doctor I was seeing didn't know anything about me/cfs so I quit him in 2007. And it's too hard to find a good specialist for this, and they're too far away, there's a waiting list, they're tied to testing, I didn't want to be just a number and not have access to treatments they might not use. Of course there was the cost too. I felt like I knew my body enough and what might work, although of course a really great doctor who was clued into me would have been ideal.
1. Fixing gut. (2000-2001) I actually did this before I got the sudden onset of me/CFS because in 1999 I got candidiasis. I was treated for candidiasis and tapeworm, leaky gut and then took probiotics. I don't think there were the good probiotics then that we have now, so I had to revisit probiotics later.
2. Miracle Mineral Solution (MMS).( For 41 days morning and evening in 2008). I put this second because I think it should have been one of the first treatments. I felt like I had virus(es) circulating. I'm not sure about this but the fact that the MMS worked makes me think this was true. On the other hand, MMS is also supposed to oxidize, i e. neutralize, heavy metals so it may have been doing that or eliminating both heavy metals and virus(es)/pathogens. After doing a round of this I no longer got flu-ish feeling every other month or two months like I had been. That feeling of being poisoned was gone. Had all kinds of detox symptoms that started off intensely then tapered off until day 39 and then I felt good. It was a game changer for me, sadly I don't think it's available any more because 'they' said it was just bleach. I did research on it and found that it wasn't. It was originally created for malaria but people wouldn't take it because it made them feel sick due to the detox reaction.
3. Nutrition. (1999-present). Good quality multivitamin and mineral supplement. I was very low in nutrients probably from years of poor gut functioning. So I had to take high amounts especially magnesium and other minerals, D and B. I took and take a lot of supplements. Without testing I'm sure I'm out of balance somewhere but I had muscle testing once which confirmed what I was taking, for what that is worth. I eat an organic, whole food lectin-free diet high in good fats, moderate in protein, moderate in carbohydrates. I avoid sugar, alcohol and caffeine. Sun exposure every day even in winter. Sun is nutrition.
4. Built up endocrine system and organs. (2007-? for Standard Process supplements). I was told by a naturopath before I got CFS that I had a problem with my pituitary and that affected the rest of my endocrine system. I took glandulars with him but later I discovered Standard Process supplements with PMGs which act as a kind of blueprint to help the endocrine system rebuild. I took Pituitrophin and Simplex F. The spleen supplement was also very helpful for me. I took Immuplex which had the liver, bone, spleen and thymus PMGs. I also took pineal gland to help my sleep. And melatonin which really helped. The PMGs must have worked because I didn't have to take them anymore, once they worked, they worked for good I believe. And bioidentical hormones until I went through menopause. I felt so much better after menopause in 2014. I don't know what was wrong but it almost like I was allergic to my hormones, or the fluctuations in them were hard on me.
5 Detoxification. (2005-2023. Will do more again as needed) I knew my body doesn't detox well and that I had toxins. I was conservative about this because I didn't want to reabsorb toxins as I believe I did when I had an unexpected Mercury detox in late 2004. I do have one mercury-containing tooth filling but I decided not to get it taken out just in case the poisoning from its removal is worse than keeping it in. If I had several fillings I would get them out. Initially I did A mercury detox supplement and a chelator that were Dr. Biamonte brand (2005). I did the
Simplified Methylation Protocol (2010?) Adapted by Rich van Konyenburg (RIP dear Rich) for CFS to help the methylation block seen in pwCFS so that the body can detox better. The whey protein particularly helped with my protein assimilation problem. I was needing to have beef almost every day before this protocol helped. I also did mild detoxes over a period of years including foot detox bath (2010-2017) which some people think is a joke but it really helped. Over the years I did NACET and chlorella. Cilantro and chlorella. Tons of garlic cloves. DMSO. I did zeolite but I did not react well to that. Also remineralizing with supplements can push stored heavy metals out of bones and tissues so I just tried to take clay and other things like chlorella to bind them while I was supplementing with vitamins and minerals. Also took milk thistle to help the liver.
6. Supplements for the brain. Phospholipids in particular really helped as did supplements for the neurotransmitters serotonin and gaba. Phosphatidylserine was #1, Gaba, theanine, 5htp, tryptophan, St. John's Wort. Omega 3s, 7s. Will try the C15 fatty acid soon. They helped me think, focus (at one point it was so bad that I literally couldn't read), calm that horrible wired feeling, help with anxiety and with sleep. The sleep thing was major.
7. Reducing stress, simplifying my life, pacing. It sounds crazy but the pandemic helped me in this. I had years of tiredness and stress piled up and for the first time I was able to rest and do nothing for months. I had to quit work in 2017 for my health which helped but I needed a long period of complete rest. I needed that rest so badly but I'm sorry for anyone that suffered during this time. Before this I had gotten really good at pacing because I was afraid of overdoing it and getting worse. I also did DNRS (2023) which is a brain training program. That helped me not stress out at every little thing which is what my overworked, damaged system was doing. It really worked for stress, I am so pleased.
8. Fredd’s B-12 Protocol (2016.) This is one of the things that helped the most. Wished I'd done it sooner. I am so thankful he developed it!!
9. Antioxidants and anti-inflammatories. (1999 - present). These are supposed to be last because Rich V.K. said that pwcfs often can't handle antioxidants at first, or they don't help until you get some of the other things worked out. I took them right away because my doc said my oxidative stress was bad even before I got me/cfs. Resveratrol and Turmeric especially helped. Also grape seed extract which crosses blood brain barrier. Antioxidants for the eyes as well. Reduced glutathione and its precursors and the supplements that help it work better. And others but resveratrol and turmeric, I call them the Dynamic Duo, they work so well.
10. Healing the gut. I believe this is central to a cure and should be done first or shortly after a more pressing issue. Find a good specialist and kill the bad bacteria/parasites and heal the leaky gut, then rebuild the microbiome. I went to Dr. Biamonte in NYC because candida is his specialty, all done by phone, not in person. It worked, done, none of this halfway stuff, never had candida again. I had already worked on rebuilding my gut with him before I got CFS but now there are some good probiotics out there. General Biotics Equilibrium (2017) is like a miracle and has helped me immensely. It was the turning point in my recovery. Felt awful! for the first two weeks but after that, great!! Also helped by Prescript Assist, Femdophilus and Life Extention Florassist Mood but the effects didn't last. I took the Equilibrium in 2017 and the good effects lasted from then until 2023. It was like I got someone's gut bacteria, almost like a fecal transplant. COVID is supposed to affect the microbiome, I had a few mild cases of it, not sure if it affected my microbiome and that's why the effects of the Equilibrium stopped or why it did. Then I took Seed (2024) for a few months and that helped a lot right way with only a few days of adjustment and so far the effects are lasting. I'm going to try Pendulum Glucose Control next, not for glucose control although that might be a good thing, but for the akkermansia and butyrate producing bacteria which are supposed to be really important for the gut. Look forward to more research and findings in this area.
Last edited:
