Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Hi, Per, As you know I share many of the same issues as you. Have you ever been tested for parasites? I've periodically had stool tests over the years and parasites have shown up and were treated. This time I used a different lab and the test came back positive for Blastocystis Hominis - which is a very hard parasite to erradicate. It seems the other labs I'd used didn't test for this. Blasto embeds itself deep into the intestinal wall and does some major damage. Apparently years ago this parasite was thought to be so widespread and non-threatening that many labs don't test for it. I don't think you've mentioned whether or not you've considered parasites as being a possible cause of your symptoms, or whether or not you've been tested. Parasites take advantage of our dysfunctional immune systems and are oportunistic. If you've done testing, check to see if the lab checked for Blasto. If not, you may want to have this done. I can give you the name of the lab I used - they work world wide. I'm walking hand in hand with you on this issue, Per. > > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Hi Per, I do a lot of leagy gut testing in my patients. The main causes of leaky gut I have identified are: -Gut infections (parasitic, viral, fungal & bacterial) -Dysbiosis. -Gut oxidative stress. -Food sensitivities (especially gluten). -Toxic substances (alcohol, NSAIDS, mercury, etc.). -Malnutrition. -Secretory IgA deficiency. -Impaired blood flow to gastrointestinal tissue à VEGF secretion à leaky gut (this is what Cheney said in his cardiomyopathy video) Candida is not the main cause of leaky gut or gut issues, it is usually a more secondary issue, although can be very important in some cases. Blake Cause of extreme LGS? Hi does anyone know of anything that are known to cause severe leaky gut ? You often hear about candida and antibiotics misuse. What about those who have a familial problem of extreme LGS? Is it still candida ? Have you all done intestinal permeability tests? What did they show ? I suspect severe LGS due to multiple food intolerances and get severe neurological symptoms from things like activated charcoal, probiotics, digestive enzymes and many things that are supposed to help. Is it inflammation or structural damage to the gut lining? Viral or bacterial infections to blame ? Is a biopsy only way to find out? Dysbiosis, candida and mercury tests are not totally conclusive. I would like to speak with someone who has similar severe reactions to these substances that are supposed to be helpful, or suspect that they know what cause severe LGS. Per Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Hi Per, I am a new member, so I am not sure if I am posting right, if the post will end up in the right place or even show up at all. But, here goes .... I suffer exactly what you describe. I have been sick 10-12 years, diagnosed with Lyme, along with a few co-infections, babesia, possible bartonella, mycoplasma (I forget which one), and more recently celiac. About 4 years ago, during a long course of tini and doxy, which cleared most, though not all, of my lingering neuro syx., my gut started going off. It was a gradual decline, but at this point I can tolerate just two foods, oddly enough chicken and broccoli (so I guess my chances of lowering my protein and sulfur, as per Yasko, are about nil). This took some time to happen. At first -- when it was first going off -- I was able to eat pretty much all meats and all fiberous veggies, then one by one they started causing me trouble. My gut would clench up, a constricted-astringent feeling, and then stop moving completely, feeling as if filled with concrete. From there I would tumble into a spiral of neuro syx., and a blanketing fatigue. No fun. At this time, even the chix and brocc give me trouble. I have to take zelmnorm daily, and milk of magnesia as needed. I had a two-year period of no abx. after this belly stuff started, as I was sure the culprit was yeast. But this did not help, and things only got worse. I was using tons of probiotics, at the time, eating very tightly, and making and consuming giant amounts of cultured veggies. Still, things got worse. Since that time, I have taken herbs, diflucan, and nystatin (currently on this). None of which have done much of anything positive (so far as i can tell). A course of levequin improved my gut temporarily, as have several other abx., but whatever is going on is/has been able to readjust and fight back. It is winning. I really don't have any answers for you. I have tried most, if not all, of the things you mentioned, and get the same neuro-immune reaction I described above. I get it from sunlight now, too, as well as from exertion. I am thinking of trying colostrum, but have found no real information to suggest it would help. Sorry to not be more helpful. But know that you are not alone. MC PS -- If anyone has any ideas, throw 'em at me. Please. > > Cause of extreme LGS? > > > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > > > > > > > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Wow. This isn't the vitamin D3 connection, is it? Anyone got any ideas? Hi MC. I'm sorry I can't help you directly, except to add that in general I've had gut problems for so long I'd just discounted them as " normal for me. " Which is to say all my life, and they were not " normal " at all. But what struck me was your mention that you now get reaction to sunlight. I started reacting to sunlight about 30 years ago, and everything has been pretty much going downhill ever since -- in all respects (which for me means primarily neurological things). Is this somehow where vitamin D3 comes in? in Champaign IL > [...]I have tried most, if not all, of the things you mentioned, and get > the same neuro-immune reaction I described above. I get it from > sunlight now, too, as well as from exertion. > [...] > Sorry to not be more helpful. But know that you are not alone. > > MC > > PS -- If anyone has any ideas, throw 'em at me. Please. Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 MC You story reminds me somewhat of Dr. Sherry 's story in her book 'Detoxify or Die.' She also was down to only a small handful of foods she could eat, everything gave her reactions, foods, environment, chemicals, stress, just everything. Her eventual recovery led to a change in career direction and she has written quite a few books. So her evolving ideas are well-documented. Not everyone will agree with her views, but she puts detoxification at the top of the list for solving problems like what you describe. Basically, her thesis is that if you are highly toxic, and the body is shutting down (reacting to everything is a way of shutting down), most drugs can not help, because drugs are part of the toxin problem. --Kurt Re: Cause of extreme LGS? Hi Per, I am a new member, so I am not sure if I am posting right, if the post will end up in the right place or even show up at all. But, here goes .... I suffer exactly what you describe. I have been sick 10-12 years, diagnosed with Lyme, along with a few co-infections, babesia, possible bartonella, mycoplasma (I forget which one), and more recently celiac. About 4 years ago, during a long course of tini and doxy, which cleared most, though not all, of my lingering neuro syx., my gut started going off. It was a gradual decline, but at this point I can tolerate just two foods, oddly enough chicken and broccoli (so I guess my chances of lowering my protein and sulfur, as per Yasko, are about nil). This took some time to happen. At first -- when it was first going off -- I was able to eat pretty much all meats and all fiberous veggies, then one by one they started causing me trouble. My gut would clench up, a constricted-astringent feeling, and then stop moving completely, feeling as if filled with concrete. From there I would tumble into a spiral of neuro syx., and a blanketing fatigue. No fun. At this time, even the chix and brocc give me trouble. I have to take zelmnorm daily, and milk of magnesia as needed. I had a two-year period of no abx. after this belly stuff started, as I was sure the culprit was yeast. But this did not help, and things only got worse. I was using tons of probiotics, at the time, eating very tightly, and making and consuming giant amounts of cultured veggies. Still, things got worse. Since that time, I have taken herbs, diflucan, and nystatin (currently on this). None of which have done much of anything positive (so far as i can tell). A course of levequin improved my gut temporarily, as have several other abx., but whatever is going on is/has been able to readjust and fight back. It is winning. I really don't have any answers for you. I have tried most, if not all, of the things you mentioned, and get the same neuro-immune reaction I described above. I get it from sunlight now, too, as well as from exertion. I am thinking of trying colostrum, but have found no real information to suggest it would help. Sorry to not be more helpful. But know that you are not alone. MC PS -- If anyone has any ideas, throw 'em at me. Please. > > Cause of extreme LGS? > > > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > > > > > > > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 HI Kurt, That is why a Detoxi profile from Genovations is a so very important test to have. It showed me what drugs are going to cause me problems, detoxing them. Janet Kurt R <kurt@...> wrote: MC You story reminds me somewhat of Dr. Sherry 's story in her book 'Detoxify or Die.' She also was down to only a small handful of foods she could eat, everything gave her reactions, foods, environment, chemicals, stress, just everything. Her eventual recovery led to a change in career direction and she has written quite a few books. So her evolving ideas are well-documented. Not everyone will agree with her views, but she puts detoxification at the top of the list for solving problems like what you describe. Basically, her thesis is that if you are highly toxic, and the body is shutting down (reacting to everything is a way of shutting down), most drugs can not help, because drugs are part of the toxin problem. --Kurt Re: Cause of extreme LGS? Hi Per, I am a new member, so I am not sure if I am posting right, if the post will end up in the right place or even show up at all. But, here goes .... I suffer exactly what you describe. I have been sick 10-12 years, diagnosed with Lyme, along with a few co-infections, babesia, possible bartonella, mycoplasma (I forget which one), and more recently celiac. About 4 years ago, during a long course of tini and doxy, which cleared most, though not all, of my lingering neuro syx., my gut started going off. It was a gradual decline, but at this point I can tolerate just two foods, oddly enough chicken and broccoli (so I guess my chances of lowering my protein and sulfur, as per Yasko, are about nil). This took some time to happen. At first -- when it was first going off -- I was able to eat pretty much all meats and all fiberous veggies, then one by one they started causing me trouble. My gut would clench up, a constricted-astringent feeling, and then stop moving completely, feeling as if filled with concrete. From there I would tumble into a spiral of neuro syx., and a blanketing fatigue. No fun. At this time, even the chix and brocc give me trouble. I have to take zelmnorm daily, and milk of magnesia as needed. I had a two-year period of no abx. after this belly stuff started, as I was sure the culprit was yeast. But this did not help, and things only got worse. I was using tons of probiotics, at the time, eating very tightly, and making and consuming giant amounts of cultured veggies. Still, things got worse. Since that time, I have taken herbs, diflucan, and nystatin (currently on this). None of which have done much of anything positive (so far as i can tell). A course of levequin improved my gut temporarily, as have several other abx., but whatever is going on is/has been able to readjust and fight back. It is winning. I really don't have any answers for you. I have tried most, if not all, of the things you mentioned, and get the same neuro-immune reaction I described above. I get it from sunlight now, too, as well as from exertion. I am thinking of trying colostrum, but have found no real information to suggest it would help. Sorry to not be more helpful. But know that you are not alone. MC PS -- If anyone has any ideas, throw 'em at me. Please. > > Cause of extreme LGS? > > > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > > > > > > > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Hi, . One thing you might consider is that you have a porphyria, which causes you to respond badly to sunlight, so you have stayed out of the sun, and that caused you to develop a vitamin D deficiency. Rich > > [...]I have tried most, if not all, of the things you mentioned, and > get > > the same neuro-immune reaction I described above. I get it from > > sunlight now, too, as well as from exertion. > > [...] > > Sorry to not be more helpful. But know that you are not alone. > > > > MC > > > > PS -- If anyone has any ideas, throw 'em at me. Please. > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 I was allergic to sunlight in my teens. In the morning. It made me sneeze. Adrienne Re: Cause of extreme LGS? Wow. This isn't the vitamin D3 connection, is it? Anyone got any ideas? Hi MC. I'm sorry I can't help you directly, except to add that in general I've had gut problems for so long I'd just discounted them as " normal for me. " Which is to say all my life, and they were not " normal " at all. But what struck me was your mention that you now get reaction to sunlight. I started reacting to sunlight about 30 years ago, and everything has been pretty much going downhill ever since -- in all respects (which for me means primarily neurological things). Is this somehow where vitamin D3 comes in? in Champaign IL > [...]I have tried most, if not all, of the things you mentioned, and get > the same neuro-immune reaction I described above. I get it from > sunlight now, too, as well as from exertion. > [...] > Sorry to not be more helpful. But know that you are not alone. > > MC > > PS -- If anyone has any ideas, throw 'em at me. Please. This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Thank you, Rich. You mentioned this once before as a possibility for me. I think now I should look at it more seriously. > > Hi, . > > One thing you might consider is that you have a porphyria, which > causes you to respond badly to sunlight, so you have stayed out of > the sun, and that caused you to develop a vitamin D deficiency. > > Rich Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 Has that changed, Adrienne? Do you still sneeze with morning sun? Are you a member of our Vampire Club now? (I've been wondering if I might be able to turn in my membership someday soon. I'm kinda afraid to test me and sun exposure still.) > > I was allergic to sunlight in my teens. In the morning. It made me sneeze. > Adrienne > Re: Cause of extreme LGS? > > Wow. This isn't the vitamin D3 connection, is it? Anyone got any > ideas? > Quote
Guest guest Posted August 15, 2006 Report Posted August 15, 2006 yes, it was just in my teens. But there have been times as an adult, -with this illness-when bright sun of any warmth was kind of overwhelming, and defintely really freaky reaction to hot sun on my skin. Not member of club; in fact seeking out the morning sun these days, since so much talk of Vit. D here. Adrienne Re: Cause of extreme LGS? > > Wow. This isn't the vitamin D3 connection, is it? Anyone got any > ideas? > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote
Guest guest Posted August 16, 2006 Report Posted August 16, 2006 Hi Rich, Do you think there is a relationship between Porphyria and CFS? I mention this because my mother has gradually developed a more severe sunsitivity over the past 40 years. She can not go out in sumlight at all during Spring through Fall without covering up. Her skin burns badly and sun. She is now so paranoid of the sun that she obsesses over this almost constantly She is very stubborn and won't take any vitamins or supplements only Lipitor for high nlood pressure. She also has mild Diabetes 2. I take it she is very low in Vit D, too. Any connections to my situation? Any suggestions or ideas? Thank you, Sue T > > Hi, . > > One thing you might consider is that you have a porphyria, which > causes you to respond badly to sunlight, so you have stayed out of > the sun, and that caused you to develop a vitamin D deficiency. > > Rich > Quote
Guest guest Posted September 27, 2006 Report Posted September 27, 2006 Per Have you tried to take L-Glutamine? I am rather sure it has helped my leaky gut and I take it often. But of course, you also have to identify and remove the original problem that causes the leaky gut. Regards, Maciej per h wrote: > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > > Quote
Guest guest Posted September 27, 2006 Report Posted September 27, 2006 I also take L-Glutamine. It's in a powder form that I throw in my cocktail of supplements. It was prescribed to me to fix my intestinal issues. I have to admit, between that and the aloe vera it really has. Cheers All. -Wendi Maciej Z <m.z@...> wrote: Per Have you tried to take L-Glutamine? I am rather sure it has helped my leaky gut and I take it often. But of course, you also have to identify and remove the original problem that causes the leaky gut. Regards, Maciej per h wrote: > Hi does anyone know of anything that are known to cause severe > leaky gut ? You often hear about candida and antibiotics misuse. > What about those who have a familial problem of extreme LGS? > Is it still candida ? Have you all done intestinal permeability tests? > What did they show ? > > I suspect severe LGS due to multiple food intolerances and get severe > neurological symptoms from things like activated charcoal, probiotics, > digestive enzymes and many things that are supposed to help. > > Is it inflammation or structural damage to the gut lining? Viral or > bacterial infections to blame ? Is a biopsy only way to find out? > > Dysbiosis, candida and mercury tests are not totally conclusive. > > I would like to speak with someone who has similar severe reactions to > these substances that are supposed to be helpful, or suspect that they > know what cause severe LGS. > > Per > > Quote
Guest guest Posted September 28, 2006 Report Posted September 28, 2006 Yes I have, both high dose and low dose. It gives me somewhat more energy, and better sleep at very low dose but If I use up that energy I sometimes still crash. I dont feel it is helping in stabilizing the gut. I know the experts say you have to identify the underlying problems that causes leaky gut, but I have no clue anymore what it could be. Viral infections, bacterial infections, autoimmunity, structural damage, heavy metal deposits ? I dont know, each one would require different interventions.... Per > > Per > > Have you tried to take L-Glutamine? > I am rather sure it has helped my leaky gut and I take it often. > But of course, you also have to identify and remove the original problem > that causes the leaky gut. > > Regards, > Maciej > > Quote
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