Discussions By Condition: Medical Stories

I would rather die than continue living like this.

Posted In: Medical Stories 22 Replies
  • Posted By: Anonymous
  • May 8, 2010
  • 02:25 AM

I was an elite athlete ten years ago. On September 11th, 2001, I went to help in the rescue and recovery effort. Helping was uplifting despite the tragedy around us. New Yorkers united, America united, to overcome and help those who needed help. My health, however, began a downward spiral. I am not depressed. I do not have mental illness. But I go to bed every night praying that I don't wake up. My body is too painful to keep on. I wish I could hang it in the closet and take a break from it - even a day a week would be helpful.

Within two years of returning from 'Ground Zero', I was put on warfrin (blood thinner) because these mysterious blood clots started to appear in my lungs. My symptoms seemed somewhat stable or at least less obvious. Then, since about 2007, I have been on a physical down hill fall. I somehow gained forty pounds. My diet or lifestyle had not changed. If anything, I hardly eat at all because I am chronically nauseated.
I did start an SSRI which improved my depressed mood and anxiety and wonder if all of that weight gain could be due to that. The joints in my hands, particularly my left hand, are chronically sore. I had to stop playing guitar because my left hand would swell up like a baseball glove as if it were engorged with blood, and become cool and very painful like a "charlie horse".

The worst symptoms have come on during this past year. I now get short of breath walking up a flight of stairs. My joints, especially my larger joints - hips, SI, knee, shoulders, wrists, are incredibly painful. They do not seem warm but do get slightly swollen. There is this predictable cycle to when my condition goes to the next level.

First, I get a sore throat. There is no tonsilar enlargement or pustular crypts. Just a slightly inflamed, reddened, sore throat. Then an unbearable fatigue which comes with the pain the joints mentioned above. I can manage to get through an eight hour shift but only if I have slept about ten hours minimum the night before. Added to this is often pain where I imagine my spleen to be. Sometimes I get a gripping left sided chest pressure.

This aspect has gotten more severe. Last night, I developed severe palpitations. I passed out twice while lying in bed. This followed about an hour of intense chest pain. Most people would have called for help by this point. I was scared but I was almost relieved by the thought that I might die. To wake up this morning, in an immense amount of pain, upper respiratory congestion that seems to be a daily event for the past three weeks, and nausea, was incredibly disappointing. I feel like I am being punished for something. In addition to every joint in my body aching, the muscles in my legs feel like I have exerted myself.

I am only 37 years old.

I am trying to list everything on the chance that someone knows what I have. But forgive me if I am not optimistic. I am a critical care physician. This will sound pompous, but if I cannot figure it out, I doubt anyone can. Thankfully, I still believe in miracles because that is what I need right now.

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22 Replies:

  • I was an elite athlete ten years ago. On September 11th, 2001, I went to help in the rescue and recovery effort. Helping was uplifting despite the tragedy around us. New Yorkers united, America united, to overcome and help those who needed help. My health, however, began a downward spiral. I am not depressed. I do not have mental illness. But I go to bed every night praying that I don't wake up. My body is too painful to keep on. I wish I could hang it in the closet and take a break from it - even a day a week would be helpful. Within two years of returning from 'Ground Zero', I was put on warfrin (blood thinner) because these mysterious blood clots started to appear in my lungs. My symptoms seemed somewhat stable or at least less obvious. Then, since about 2007, I have been on a physical down hill fall. I somehow gained forty pounds. My diet or lifestyle had not changed. If anything, I hardly eat at all because I am chronically nauseated.I did start an SSRI which improved my depressed mood and anxiety and wonder if all of that weight gain could be due to that. The joints in my hands, particularly my left hand, are chronically sore. I had to stop playing guitar because my left hand would swell up like a baseball glove as if it were engorged with blood, and become cool and very painful like a "charlie horse". The worst symptoms have come on during this past year. I now get short of breath walking up a flight of stairs. My joints, especially my larger joints - hips, SI, knee, shoulders, wrists, are incredibly painful. They do not seem warm but do get slightly swollen. There is this predictable cycle to when my condition goes to the next level. First, I get a sore throat. There is no tonsilar enlargement or pustular crypts. Just a slightly inflamed, reddened, sore throat. Then an unbearable fatigue which comes with the pain the joints mentioned above. I can manage to get through an eight hour shift but only if I have slept about ten hours minimum the night before. Added to this is often pain where I imagine my spleen to be. Sometimes I get a gripping left sided chest pressure. This aspect has gotten more severe. Last night, I developed severe palpitations. I passed out twice while lying in bed. This followed about an hour of intense chest pain. Most people would have called for help by this point. I was scared but I was almost relieved by the thought that I might die. To wake up this morning, in an immense amount of pain, upper respiratory congestion that seems to be a daily event for the past three weeks, and nausea, was incredibly disappointing. I feel like I am being punished for something. In addition to every joint in my body aching, the muscles in my legs feel like I have exerted myself. I am only 37 years old. I am trying to list everything on the chance that someone knows what I have. But forgive me if I am not optimistic. I am a critical care physician. This will sound pompous, but if I cannot figure it out, I doubt anyone can. Thankfully, I still believe in miracles because that is what I need right now. I am around your age. I have a PhD in biochemistry - one thing scientists seem to learn a lot more often than MD's is that we do not know everything. I also know that our viewpoint is very often limited by our area's of expertise. You need to open yourself up to the possibility that what you are suffering is not yet well understood by medicine. The symptoms you are describing sound like they are in the realm of CFS and Fibro - these two disorders are not very well covered by popular medicine in the USA. I have CFS symptoms, some similar to yours. I believe, at the heart of this disorder, is mitochondrial dysfunction. Unfortunately, science is very behind on understanding this most basic aspect of human life. A lot of interest has grown in the 2000's, but we're no where near the level of knowledge that is needed. Mitochondrial dysfunction can arise as a result of toxic exposures - e.g., ground zero. Mitochondria are more similar to bacteria in their DNA, the DNA is not protected the way that chromosomal DNA is and thus is much more susceptible to damage and the resultant dysfunction. Many diseases are now becoming recognized as being mitochondrial disorders. Also, as mitochondria are found throughout your body, disorders can affect many body systems, in fact, one hallmark of a mitochondrial disorder is when multiple body systems are affected. Thus, I would suggest to you that you try applying some mitochondiral support in the way of nutritional supplementation - there is actually a quite good thread that covers this topic and has helped many people including myself. The thread is on this site and is titled "Vitamin B12 deficiency is commonly misdiagnosed". B12 discussion thread: http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1087 Active B12 basics thread (contains most relevant info and should be your starting point): http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131 As a physician you may think you know about B12, what you are commonly taught is not accurate. A search of the literature will show this - B12 comes in many forms and has only two forms that are active in your body (methylcobalamin and adenosylcobalamin). Many people have trouble converting the commonly supplemented, non-biologically relevant form into forms they can use. Both biologically relevant forms are fragile and rapidly converted to hydroxycobalamin (less biologically relevant) thus quality is important. This also applies to folate, which is best taken as methylfolate, rather than the more common folic acid. There are numerous other co-factors that can help a lot. My fatigue is most affected by carnitine. Please take a look. Come over to the discussion thread with any questions or concerns, there is a wealth of information there. You'll find many who have suffered form pain for years and who have been able to discontinue or reduce it significantly. Don't just discount this, do the research. Velha
    velha508 321 Replies Flag this Response
  • I was an elite athlete ten years ago. On September 11th, 2001, I went to help in the rescue and recovery effort. Helping was uplifting despite the tragedy around us. New Yorkers united, America united, to overcome and help those who needed help. My health, however, began a downward spiral. I am not depressed. I do not have mental illness. But I go to bed every night praying that I don't wake up. My body is too painful to keep on. I wish I could hang it in the closet and take a break from it - even a day a week would be helpful. Within two years of returning from 'Ground Zero', I was put on warfrin (blood thinner) because these mysterious blood clots started to appear in my lungs. My symptoms seemed somewhat stable or at least less obvious. Then, since about 2007, I have been on a physical down hill fall. I somehow gained forty pounds. My diet or lifestyle had not changed. If anything, I hardly eat at all because I am chronically nauseated.I did start an SSRI which improved my depressed mood and anxiety and wonder if all of that weight gain could be due to that. The joints in my hands, particularly my left hand, are chronically sore. I had to stop playing guitar because my left hand would swell up like a baseball glove as if it were engorged with blood, and become cool and very painful like a "charlie horse". The worst symptoms have come on during this past year. I now get short of breath walking up a flight of stairs. My joints, especially my larger joints - hips, SI, knee, shoulders, wrists, are incredibly painful. They do not seem warm but do get slightly swollen. There is this predictable cycle to when my condition goes to the next level. First, I get a sore throat. There is no tonsilar enlargement or pustular crypts. Just a slightly inflamed, reddened, sore throat. Then an unbearable fatigue which comes with the pain the joints mentioned above. I can manage to get through an eight hour shift but only if I have slept about ten hours minimum the night before. Added to this is often pain where I imagine my spleen to be. Sometimes I get a gripping left sided chest pressure. This aspect has gotten more severe. Last night, I developed severe palpitations. I passed out twice while lying in bed. This followed about an hour of intense chest pain. Most people would have called for help by this point. I was scared but I was almost relieved by the thought that I might die. To wake up this morning, in an immense amount of pain, upper respiratory congestion that seems to be a daily event for the past three weeks, and nausea, was incredibly disappointing. I feel like I am being punished for something. In addition to every joint in my body aching, the muscles in my legs feel like I have exerted myself. I am only 37 years old. I am trying to list everything on the chance that someone knows what I have. But forgive me if I am not optimistic. I am a critical care physician. This will sound pompous, but if I cannot figure it out, I doubt anyone can. Thankfully, I still believe in miracles because that is what I need right now. I agree with Velha, "what you are suffering is not yet well understood by medicine." Although I can certainly empathize with most of your symptoms and feeling sick for so long I did not expereince the WTC. However, I, too, was an elite athlete. Running 30 miles plus per week and regular strength training while on Active Duty. Unfortunately, I became extremely sick, passed out numerous times and had to be hospitalized three times just prior to shipping off for Baghdad. I never did make it overseas but I did manage to pull through at the hospital. Sadly, the doctors were "stumped" by my malabsorption syndrome, extremely low bp and pulse, potassium deficiency as well as other essentail minerals and vitamins. I now have been dx with Celiac but I still have long periods of sickeness to the point I can no longer work outside the home. BTW, I do receive B-12 injections every month. I think it helps? But there are days I would rather check out as well....I drive on because of my son......I hope you can find the strength to keep on keepin on
    Johnniejean 2 Replies Flag this Response
  • Dear Velha,I wanted to let you know how much I appreciated your insights on mitochondrial disorders. In reading your reply I realized how my arrogant pitty potty episode yesterday was a barrier to getting better. What you described was fascinating. My mom keeps talking about orthomolecular medicine. I love my mom, but she can talk the hind leg off an elephant when it comes to alternative medicine. In reality, I am open to all kinds of medicine. I appreciate that the kind I practice is the most infantile when compared to medicine of different cultures or backgrounds. The B12 information perked my interest. I once had a B12 shot and after several hours was incredibly jittery and irritable. My spouse has banned me from ever having one again! Seriously, I felt awful. In closing, your information provides the first solution for some time. I will go to the sites you recommended.Thank you so much for taking your time to help me. Maybe this will be the miracle I am looking for.I am around your age. I have a PhD in biochemistry - one thing scientists seem to learn a lot more often than MD's is that we do not know everything. I also know that our viewpoint is very often limited by our area's of expertise. You need to open yourself up to the possibility that what you are suffering is not yet well understood by medicine. The symptoms you are describing sound like they are in the realm of CFS and Fibro - these two disorders are not very well covered by popular medicine in the USA. I have CFS symptoms, some similar to yours. I believe, at the heart of this disorder, is mitochondrial dysfunction. Unfortunately, science is very behind on understanding this most basic aspect of human life. A lot of interest has grown in the 2000's, but we're no where near the level of knowledge that is needed. Mitochondrial dysfunction can arise as a result of toxic exposures - e.g., ground zero. Mitochondria are more similar to bacteria in their DNA, the DNA is not protected the way that chromosomal DNA is and thus is much more susceptible to damage and the resultant dysfunction. Many diseases are now becoming recognized as being mitochondrial disorders. Also, as mitochondria are found throughout your body, disorders can affect many body systems, in fact, one hallmark of a mitochondrial disorder is when multiple body systems are affected. Thus, I would suggest to you that you try applying some mitochondiral support in the way of nutritional supplementation - there is actually a quite good thread that covers this topic and has helped many people including myself. The thread is on this site and is titled "Vitamin B12 deficiency is commonly misdiagnosed". B12 discussion thread: http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1087 Active B12 basics thread (contains most relevant info and should be your starting point): http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131 As a physician you may think you know about B12, what you are commonly taught is not accurate. A search of the literature will show this - B12 comes in many forms and has only two forms that are active in your body (methylcobalamin and adenosylcobalamin). Many people have trouble converting the commonly supplemented, non-biologically relevant form into forms they can use. Both biologically relevant forms are fragile and rapidly converted to hydroxycobalamin (less biologically relevant) thus quality is important. This also applies to folate, which is best taken as methylfolate, rather than the more common folic acid. There are numerous other co-factors that can help a lot. My fatigue is most affected by carnitine. Please take a look. Come over to the discussion thread with any questions or concerns, there is a wealth of information there. You'll find many who have suffered form pain for years and who have been able to discontinue or reduce it significantly. Don't just discount this, do the research. Velha
    Anonymous 42789 Replies Flag this Response
  • I am completely familiar with the things you are describing and 3 yrs ago, death would have been a relief for me! Yes, mitochondrial disorder is in question for me and my 3 children due to our various symptoms and I was actually planning a trip to Cleveland Clinic to see a mitochondrial specialist about 2 yrs. ago. I have been burdened with ongoing painful symptoms since the age of 10 and developed and rare autoimmune disorder from having constant high histamine levels. Still could be the possibility of a mitochondrial disorder as being underlying but for now I stick with the High histamine diagnosis! It can be very scary, traumatic (causing PTSD in me) and lead to many forms of autoimmunity based on genetic weaknesses. Hence the mitochondrial theory. Due to constant high histamine, my body started recognizing my OWN hormones as allergens. Not that the same thing is going on with you as far as your hormones, that's just how my body dealt with my high histamine based on MY genetic make up. BUT being exposed to the things you were exposed to at ground zero could have triggered an increase in your histamine levels causing some sort of autoimmunity in you, just like what happened to me. My body recognized my hormones as allergens and I started suffering anaphylactic shock. Seizures, heart palp, severe breathing distress, digestive disorders, burning muscle pain, migraines, vision/hearing disturbances, etc. I had a specialist for every organ in my body because high histamine and a severe allergic reaction (which is a form of autoimmunity), was never suspected. If you were to develop high histamine from the exposures at ground zero, then your genetic weaknesses would determine your autoimmunity. Could be fibro, CFS, rhuematoid arthritis, osteo arthritis, I could go on and on. What got me on the road to recovery and now remission is natural supplements. I did a colon cleanse from Dr. Natura and the Detox program and within 4 days my pain was unbelievably better. I'm sure you have certain toxic exposures locked up inside your body somewhere and you're in toxic overload causing an upward spiral in histamine levels. Sounds ridiculous but medical doctors could not help me and neither could their medications. Please do not exclude this alternative in finding a possible treatment/cure. It was all I had left to save my own life and no one but myself could help me!!! Research and more research, an open mind to natural treatments, and furthering your education are about your only other options at this point.
    Anonymous 42789 Replies Flag this Response
  • Dear Johnnie,thank you for your supportive comments. I am sure you are also familiar with the anger that comes with going from a high performance athlete to barely making it through a day because of illness. Today I ordered some of the B12 and related supplies that Velha suggested. I am not going to go nuts and start taking dozens of supplements. However, I am going to take the B12 combination with folate, as well as a Calcium, Magnesium, and Vit D tablet. I also bought on with L-tryptophan but only a minute ago realized it has Niacinamide. I HATE the flushing that comes with Niacin. Darn, wish I noticed that ingredient before buying it. Do you, or anyone reading this, have suggestions of dealing with Niacin flush?Johnnie, I hope you hang on too. You are obviously a very good and kind hearted person to love your child as much as you do. Some days all I can do is pray. I am not religious, but do believe in a higher power. I will say a prayer for you tonight. Take care.I agree with Velha, "what you are suffering is not yet well understood by medicine." Although I can certainly empathize with most of your symptoms and feeling sick for so long I did not expereince the WTC. However, I, too, was an elite athlete. Running 30 miles plus per week and regular strength training while on Active Duty. Unfortunately, I became extremely sick, passed out numerous times and had to be hospitalized three times just prior to shipping off for Baghdad. I never did make it overseas but I did manage to pull through at the hospital. Sadly, the doctors were "stumped" by my malabsorption syndrome, extremely low bp and pulse, potassium deficiency as well as other essentail minerals and vitamins. I now have been dx with Celiac but I still have long periods of sickeness to the point I can no longer work outside the home. BTW, I do receive B-12 injections every month. I think it helps? But there are days I would rather check out as well....I drive on because of my son......I hope you can find the strength to keep on keepin on
    Dr. Tired 4 Replies Flag this Response
  • Dear Johnnie,thank you for your supportive comments. I am sure you are also familiar with the anger that comes with going from a high performance athlete to barely making it through a day because of illness. Today I ordered some of the B12 and related supplies that Velha suggested. I am not going to go nuts and start taking dozens of supplements. However, I am going to take the B12 combination with folate, as well as a Calcium, Magnesium, and Vit D tablet. I also bought on with L-tryptophan but only a minute ago realized it has Niacinamide. I HATE the flushing that comes with Niacin. Darn, wish I noticed that ingredient before buying it. Do you, or anyone reading this, have suggestions of dealing with Niacin flush?Johnnie, I hope you hang on too. You are obviously a very good and kind hearted person to love your child as much as you do. Some days all I can do is pray. I am not religious, but do believe in a higher power. I will say a prayer for you tonight. Take care.I posted a link for you but WD keeps removing it. My story and how I know so much about high histamine effects is on hubpages and my Profile name on there is She-rah if you wanted to do a search and take a look at my articles on awareness of my autoimmune condition caused by high histamine (IgE). Wanted to let you know that if your problems are related to high IgE then Folic acid can raise your IgE even more. Niacin, ca, mg, and B12 are really good ones and the flush is horrible. If you flush badly and right away on small doses of niacin then you definitely have high histamine affecting every part of your body. You should build up a tolerance to it within a few days. Not much you can do to deal with it except deal with it until tolerance kicks in. Can't remember if niacinamide is the nonflushing kind or not. I'm sure you already know this but histamine is a neurological transmitter that effects every part of the body, high levels will cause a lot of muscle burning, breathing distress, swelling, heart palp. amongst many other symptoms exactly like the ones you are describing. MELAS is the mitochondrial disorder suspected in me. I have done a great deal of research on these disorders. For now, I will just stick to believing the high histamine and autoimmune diagnosis. Those are easier for me to swallow if you know what I mean. I was suffering from anaphylaxis and organ failure almost every month but only on occasion had external symptoms like swelling and hives making diagnosis very, very difficult. Times when I was suffering full blown anaphylaxis, I had no external symptoms what so ever. Everyday I was suffering with the pain, severe fatigue that made me out of breath just to walk to the bathroom, and other symptoms. 2 weeks out of the month I was suffering from a slow forming anaphylaxis. Took them 24 yrs to diagnose and I had to demand the testing. I was so very angry because of how I was treated, lack of medical evidence, and I was told that I needed mental help by most doctors. I completely understand the anger you're feeling. I had seen 16 specialists in 2 yrs., one for just about every organ in my body with no positive diagnosis until last summer. They never suspected high histamine levels causing all of my symptoms and autoimmunity. I was repeatedly hooked up to heart monitors, O2, fluids, and in excrutiating/burning muscle pain along with repeated seizures. At one point my husband and children wouldn't leave my side in ER because they weren't sure I was going to make it, I'm only 34 and definitely not ready to throw in the towel. The depression was overwhelming and I just had to keep fighting and researching! I was never treated with epinephrine and survived only using natural supplements. I am currently in remission using only natural treatments and my doctors are baffled at how I have done this with such a rare autoimmune disorder. They listen to me NOW, take all my research, make copies, put it in my records, and do their own research on my treatments. They're on call for me at any time for any emergencies. A really good vitamin that helped me with energy and malabsorption issues tremendously was Eniva Vibe. It has it all and is probably cheaper than buying individual vitamins/minerals, etc. I just can't afford it all the time but it worked wonders for my deficiencies. Very effective because it's liquid form, my body wouldn't absorb pills. I hope this helps and you find the answers your looking for to put and end to your medical problems! My email is loricody1@comcast.net if you have any questions.
    Anonymous 42789 Replies Flag this Response
  • Dear Velha, I wanted to let you know how much I appreciated your insights on mitochondrial disorders. In reading your reply I realized how my arrogant pitty potty episode yesterday was a barrier to getting better. What you described was fascinating. My mom keeps talking about orthomolecular medicine. I love my mom, but she can talk the hind leg off an elephant when it comes to alternative medicine. In reality, I am open to all kinds of medicine. I appreciate that the kind I practice is the most infantile when compared to medicine of different cultures or backgrounds. The B12 information perked my interest. I once had a B12 shot and after several hours was incredibly jittery and irritable. My spouse has banned me from ever having one again! Seriously, I felt awful. In closing, your information provides the first solution for some time. I will go to the sites you recommended. Thank you so much for taking your time to help me. Maybe this will be the miracle I am looking for. Your comment about about being banned from ever taking B12 again tells me all I need to know! A reaction like this is hallmark of a deficiency. PLEASE, read the links I posted, all of us go through this period in one form or another when getting ourselves back to health. Thus, this reaction is normal. Knowing this and knowing what to expect will help you through the experience. Through group experience there has also been an order of starting these supplements worked out that will make your experience less horrible. There is an entire additional thread on the aboutmecfs forums, don't have the link, please look it up. Where many people with all different stages of CFS (i.e., mitochondrial failure/dysfunction) have just gone through or are currently going through what you will in the next few months if you follow through. You will get your life back, you need to follow the advice on the l inks I provided and work from there. It is all some need, it is a huge stepping stone for others. Take care,Velha
    velha508 321 Replies Flag this Response
  • I agree with Velha, "what you are suffering is not yet well understood by medicine." Although I can certainly empathize with most of your symptoms and feeling sick for so long I did not expereince the WTC. However, I, too, was an elite athlete. Running 30 miles plus per week and regular strength training while on Active Duty. Unfortunately, I became extremely sick, passed out numerous times and had to be hospitalized three times just prior to shipping off for Baghdad. I never did make it overseas but I did manage to pull through at the hospital. Sadly, the doctors were "stumped" by my malabsorption syndrome, extremely low bp and pulse, potassium deficiency as well as other essentail minerals and vitamins. I now have been dx with Celiac but I still have long periods of sickeness to the point I can no longer work outside the home. BTW, I do receive B-12 injections every month. I think it helps? But there are days I would rather check out as well....I drive on because of my son......I hope you can find the strength to keep on keepin on PLEASE read the links I directed Dr. Tired to. If you are in the US the standard B12 injection will by cyanocobalamin, most likely not useful at all! A single scrap of the recommended methylcobalamin sublinguals will get you light years ahead of the injection. Read the links the information is all there, it works. Your case sounds more similar to mine in that the supplements were not enough. My digestive system had become destroyed to the point that I also required supplementation with amino acids to really start healing. I also have low blood pressure (this is common in CFS). To explain a bit further - when your cells are fatigued, your mitochondria are not making enough ATP - the output of energy does not meet the need. This leads to malabsorbtion and digestive failure - the i ntestinal lining are some of the most energy demanding cells in the body, they regenerate themselves every 3-5 days. They are some of the first to fail for many - thus, the strange allergies and the low minerals and amino acids - it is a vicious cycle. If you try the sublinguals as directed on the links I posted above and have any reaction, continue on. Come back and ask and I will post more about what I did/am currently doing to heal my digestive system. While I'm doing this though, I now have the energy to take care of young children and work a full time job - not possible prior to starting following the suggestions on the links above. Good luck - help yourself, you do not deserve to live like you are with every day a struggle. People who don't experience this level of fatigue will never understand. Please also search for 'methylation block' and read the theories posted there. They explain the reason we do not get better - the methylation block needs to be lifted. There is a very helpful researcher Rich Van Konyenburg who developed this theory... Velha
    velha508 321 Replies Flag this Response
  • PLEASE read the links I directed Dr. Tired to. If you are in the US the standard B12 injection will by cyanocobalamin, most likely not useful at all! A single scrap of the recommended methylcobalamin sublinguals will get you light years ahead of the injection. Read the links the information is all there, it works. Your case sounds more similar to mine in that the supplements were not enough. My digestive system had become destroyed to the point that I also required supplementation with amino acids to really start healing. I also have low blood pressure (this is common in CFS). To explain a bit further - when your cells are fatigued, your mitochondria are not making enough ATP - the output of energy does not meet the need. This leads to malabsorbtion and digestive failure - the i ntestinal lining are some of the most energy demanding cells in the body, they regenerate themselves every 3-5 days. They are some of the first to fail for many - thus, the strange allergies and the low minerals and amino acids - it is a vicious cycle. If you try the sublinguals as directed on the links I posted above and have any reaction, continue on. Come back and ask and I will post more about what I did/am currently doing to heal my digestive system. While I'm doing this though, I now have the energy to take care of young children and work a full time job - not possible prior to starting following the suggestions on the links above. Good luck - help yourself, you do not deserve to live like you are with every day a struggle. People who don't experience this level of fatigue will never understand. Please also search for 'methylation block' and read the theories posted there. They explain the reason we do not get better - the methylation block needs to be lifted. There is a very helpful researcher Rich Van Konyenburg who developed this theory... VelhaVelha- So glad you mentioned the methylation cycle! Most have no idea what it even is. I am very familiar with this condition but it is very difficult to explain so I've only included some info on my high Ige (theoretically called histadelia). I mentioned this cycle to my Immunologist/Internal Med Specialist and he didn't have a clue as to what I was talking about. I have suffered the fatigue you mentioned for many years, low BP as well, amongst many other symptoms. The ultimate cause of my high Ige and my autoimmunity is caused by undermethylation, I believe. I have had a great response to the active vitamins/minerals. Especially the methyls. My digestive was completely destroyed suffering from severe gastroparesis and anaphylaxis causing me to vomit blood and bile. I had little absorption from food or regular vitamins. Unfortunately the methylation/undermethylation cycle is only considered a theory of a brilliant scientific researcher. Therefore, not taught to the medical profession or even recognized as a medical condition causing serious medical problems. Doctors love to hand out drugs like candy for all of the symptoms it produces and most trust they're doctors/drugs, never do they're own research, and never get better. They just cover up the symptoms but never treat/cure the source of the problem. Methionine ( specifically SAMe), methyl B12, vital amino acids, active vitamins/minerals etc. are extremely important. You did a wonderful job of explaining the mitochondrial/ ATP connection, Kudos. I do not believe I have actual mitochondrial damage (maybe a little but not MELAS), but I do believe my mitochondrial performance and production of ATP was greatly hindered by lack of methylation. The colon cleanse/detox/probiotics helped to get out all the toxins built up inside my body, followed by a regimen of the active, liquid vitamin/mineral supplements, and my own form of immunotherapy for my autoimmunity have made miraculous changes in me. I am currently working 3 jobs, one of which is devoted to helping others with rare autoimmune diseases and ongoing/undiagnosed medical problems. Still having some very minor issues about 1 week a month due to hormonal flux but I don't even really notice it compared to what I was suffering before. Wish others would do their own research and take their health into their own hands, could save so many lives and give back quality of life. I too was majoring in bio/chem years ago and had a very big set back in my education due to my health. I'm so glad you're using your education to help others. That is my ultimate goal as well. Although I have not had the extensive training and education you have had, I have extensively researched and studied for the last 15yrs. I am able to completely understand as well as being very familiar with the things you are talking about. May be difficult for some with out a medical or science background, it's a pretty complicated cycle. I could not explain the things you have mentioned as easily or briefly as you have, much appreciated by me and others. Thank You! I was actually getting ready to publish an article on the methylation cycle and how it affects histamine levels/causes autoimmunity, "The Vicious Cycle". It is my niche on hubpages. My story about my condition and treatment is published there, excluding the more scientific details of the methylation cycle. The series is called "I'm Allergic to My Hormones", WD won't let me post the link so you'll have to do a search if your interested in reading. I would love for you to take a look and see what else I could do to possibly cure myself. I am currently in remission by my own doing but not cured as of yet. Still researching!!!
    Anonymous 42789 Replies Flag this Response
  • Hi, just wanted to drop in on this thread I started. Today I received my supplements from iHerb. I am starting with 3. I got a Calcium, Mg, Vit D liquid supplement. I got the 5000mcg Methyl B-12 lozenges. And finally, a L-Tryptophan Enhanced with Vit B6, Niacinamide 500mg. I don't seem to flush so severely with the Niacinamide. I am excited. I told my friends that I am strengthening my mitochondria! Off to work, please keep this fascinating discussion going. I am learning so much and am feeling hopeful again.
    Dr. Tired 4 Replies Flag this Response
  • Hey, I would love it if you posted your paper here! I have been given hope from the information mentioned here. Keep the hope flowing and share your knowledge!Velha- So glad you mentioned the methylation cycle! Most have no idea what it even is. I am very familiar with this condition but it is very difficult to explain so I've only included some info on my high Ige (theoretically called histadelia). I mentioned this cycle to my Immunologist/Internal Med Specialist and he didn't have a clue as to what I was talking about. I have suffered the fatigue you mentioned for many years, low BP as well, amongst many other symptoms. The ultimate cause of my high Ige and my autoimmunity is caused by undermethylation, I believe. I have had a great response to the active vitamins/minerals. Especially the methyls. My digestive was completely destroyed suffering from severe gastroparesis and anaphylaxis causing me to vomit blood and bile. I had little absorption from food or regular vitamins. Unfortunately the methylation/undermethylation cycle is only considered a theory of a brilliant scientific researcher. Therefore, not taught to the medical profession or even recognized as a medical condition causing serious medical problems. Doctors love to hand out drugs like candy for all of the symptoms it produces and most trust they're doctors/drugs, never do they're own research, and never get better. They just cover up the symptoms but never treat/cure the source of the problem. Methionine ( specifically SAMe), methyl B12, vital amino acids, active vitamins/minerals etc. are extremely important. You did a wonderful job of explaining the mitochondrial/ ATP connection, Kudos. I do not believe I have actual mitochondrial damage (maybe a little but not MELAS), but I do believe my mitochondrial performance and production of ATP was greatly hindered by lack of methylation. The colon cleanse/detox/probiotics helped to get out all the toxins built up inside my body, followed by a regimen of the active, liquid vitamin/mineral supplements, and my own form of immunotherapy for my autoimmunity have made miraculous changes in me. I am currently working 3 jobs, one of which is devoted to helping others with rare autoimmune diseases and ongoing/undiagnosed medical problems. Still having some very minor issues about 1 week a month due to hormonal flux but I don't even really notice it compared to what I was suffering before. Wish others would do their own research and take their health into their own hands, could save so many lives and give back quality of life. I too was majoring in bio/chem years ago and had a very big set back in my education due to my health. I'm so glad you're using your education to help others. That is my ultimate goal as well. Although I have not had the extensive training and education you have had, I have extensively researched and studied for the last 15yrs. I am able to completely understand as well as being very familiar with the things you are talking about. May be difficult for some with out a medical or science background, it's a pretty complicated cycle. I could not explain the things you have mentioned as easily or briefly as you have, much appreciated by me and others. Thank You! I was actually getting ready to publish an article on the methylation cycle and how it affects histamine levels/causes autoimmunity, "The Vicious Cycle". It is my niche on hubpages. My story about my condition and treatment is published there, excluding the more scientific details of the methylation cycle. The series is called "I'm Allergic to My Hormones", WD won't let me post the link so you'll have to do a search if your interested in reading. I would love for you to take a look and see what else I could do to possibly cure myself. I am currently in remission by my own doing but not cured as of yet. Still researching!!!
    Dr. Tired 4 Replies Flag this Response
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  • Hi, just wanted to drop in on this thread I started. Today I received my supplements from iHerb. I am starting with 3. I got a Calcium, Mg, Vit D liquid supplement. I got the 5000mcg Methyl B-12 lozenges. And finally, a L-Tryptophan Enhanced with Vit B6, Niacinamide 500mg. I don't seem to flush so severely with the Niacinamide. I am excited. I told my friends that I am strengthening my mitochondria! Off to work, please keep this fascinating discussion going. I am learning so much and am feeling hopeful again.Glad you are so excited and hopeful! Another that you may want to look into is CoQ10 and it's role in mito dysfunction. The statin drugs, like Lipitor, have been proven to cause mito damage and it should be advised to take CoQ10 to prevent damage or help with any deficiencies caused by mito damage. Doctors in the US do not tell us this, I don't think they really know this proven fact. Pharma sure won't tell us! In other countries, they prescribe Lipitor in combo with CoQ10. Not sure if there is a patent for this yet but there was one pending, and I don't think the FDA will allow prescribing the combo. Anyway, just a suggestion, it's another that helped me, but I'm no longer taking that one alone, unless I take the eniva vibe (it's included).
    Anonymous 42789 Replies Flag this Response
  • Your comment about about being banned from ever taking B12 again tells me all I need to know! A reaction like this is hallmark of a deficiency. Take care,Velha i agree with this poster. Side effects eg flushing from the Niacinamide often means one is a bit deficient in it (something i got taught while studying Nutrition at collage.. Take a large dose and see if there is a flush, to see if you are needing to supplement or change your diet to include more B foods) or if its causing irritability and jitteriness that can be cause B12 helps to bring out and clear body toxins.. and the side effects can be a sign of this body cleaning/cleansing going on. Anyone with side effects, just try to cut back and take a lesser amount and give your body time to settle down on it.
    taniaaust1 2267 Replies Flag this Response
  • Velha- So glad you mentioned the methylation cycle! Most have no idea what it even is. I am very familiar with this condition but it is very difficult to explain so I've only included some info on my high Ige (theoretically called histadelia). I mentioned this cycle to my Immunologist/Internal Med Specialist and he didn't have a clue as to what I was talking about. I have suffered the fatigue you mentioned for many years, low BP as well, amongst many other symptoms. The ultimate cause of my high Ige and my autoimmunity is caused by undermethylation, I believe. I have had a great response to the active vitamins/minerals. Especially the methyls. My digestive was completely destroyed suffering from severe gastroparesis and anaphylaxis causing me to vomit blood and bile. I had little absorption from food or regular vitamins. Unfortunately the methylation/undermethylation cycle is only considered a theory of a brilliant scientific researcher. Therefore, not taught to the medical profession or even recognized as a medical condition causing serious medical problems. Doctors love to hand out drugs like candy for all of the symptoms it produces and most trust they're doctors/drugs, never do they're own research, and never get better. They just cover up the symptoms but never treat/cure the source of the problem. Methionine ( specifically SAMe), methyl B12, vital amino acids, active vitamins/minerals etc. are extremely important. You did a wonderful job of explaining the mitochondrial/ ATP connection, Kudos. I do not believe I have actual mitochondrial damage (maybe a little but not MELAS), but I do believe my mitochondrial performance and production of ATP was greatly hindered by lack of methylation. The colon cleanse/detox/probiotics helped to get out all the toxins built up inside my body, followed by a regimen of the active, liquid vitamin/mineral supplements, and my own form of immunotherapy for my autoimmunity have made miraculous changes in me. I am currently working 3 jobs, one of which is devoted to helping others with rare autoimmune diseases and ongoing/undiagnosed medical problems. Still having some very minor issues about 1 week a month due to hormonal flux but I don't even really notice it compared to what I was suffering before. Wish others would do their own research and take their health into their own hands, could save so many lives and give back quality of life. I too was majoring in bio/chem years ago and had a very big set back in my education due to my health. I'm so glad you're using your education to help others. That is my ultimate goal as well. Although I have not had the extensive training and education you have had, I have extensively researched and studied for the last 15yrs. I am able to completely understand as well as being very familiar with the things you are talking about. May be difficult for some with out a medical or science background, it's a pretty complicated cycle. I could not explain the things you have mentioned as easily or briefly as you have, much appreciated by me and others. Thank You! I was actually getting ready to publish an article on the methylation cycle and how it affects histamine levels/causes autoimmunity, "The Vicious Cycle". It is my niche on hubpages. My story about my condition and treatment is published there, excluding the more scientific details of the methylation cycle. The series is called "I'm Allergic to My Hormones", WD won't let me post the link so you'll have to do a search if your interested in reading. I would love for you to take a look and see what else I could do to possibly cure myself. I am currently in remission by my own doing but not cured as of yet. Still researching!!! It's always better if you can post the link!! My time on the internet is extemely limited these days, now that I am functional enough to have a life back. I think the reason may be that you are posting as an unregistered guest, sign up for a screen name and then repost. It's always helpful to have a screen name to follow so we know who is posting what... I would be really interested in reading your cycle because I suspected something similar to what you are saying - some link between poor methylation and increased allergies (this has been suggested on the links I posted and I've experienced it myself - I haven't YET experienced the reduction in allergies that I expected to happen, but I am hopeful). Dr. Tired - please join the discussion on the B12 is commonly misdiagnosed thread, it covers all we've mentioned here and more. Also - though a lot is spelled out for you on the active B12 site regarding how to get started, sometimes it's not that simple and having the support of others going through the process can be very helpful. Velha
    velha508 321 Replies Flag this Response
  • Ok, signed up so we'll see about the links I'm going to post. Completely understand the "functional again" and "no time". Work was rained out AGAIN today so I've spent some time finding some sources that may benefit. Please understand, if you read my hubpage articles, they are written for everyone to understand and not just the medically or scientifically inclined. They are about what has happened to me and my theories based on undermethylation causing histadelia. I haven't had time to write or even publish my article on the methylation cycle "The Vicious Cycle", it's still in the works. I do have some of my resources for the article on undermethylation and 1 article published so far on my theories based on toxic exposures causing undermethylation leading to high histamine and then leading to various autoimmunities based on genetic weaknesses. Proper mitochondrial function relies on the methylation of carnitine, CoQ10, and a few others. If undermethylation is occurring for what ever reason then the mitochondria do not function properly, produce enough ATP, and our organs do not have the energy they need to function properly. Our liver controls histamine levels, certain methyl conversions, detoxification, etc. When the liver is overburdened with toxins, damaged, diseased, or has some kind of weak genetic link, these processes, many processes begin to malfunction or not be able to keep up leading to other various complications. Toxic build up begins occurring in other parts of the body, ie. intestines, blood, brain, etc. Causing the immune system to literally go haywire and not be able to recognize the good guys from the bad guys.Methylation is where methyl groups bind to various vitamins, minerals, amino acids, etc. and a conversion takes place triggering hundreds of responses in our bodies to be able to function normally. (This is the very short version, lol). It is responsible for turning on or turning off good/bad DNA. DNA that is obviously genetically inherited. One of those functions is in our immune system and regulation of histamine levels, with the liver controlling how much histamine stays and how much is removed. When histamine levels become abnormally high, various autoimmune responses begin taking place. Your immune system then begins to recognize normal substances, even within your own body, as foreign and it attacks causing autoimmunity. This is what happened to me because of lack of diagnosis and treatment. Now, for someone else who sufferers undermethylation and high histamine, it depends on their DNA. What bad DNA gets turned on and what good DNA gets turned off. Your autoimmunity or reactions could be anything, especially things that run in family history. Mild hayfever could turn into disabling symptoms and/or life threatening reactions without ever showing visible physical allergic symptoms. Could literally be anything inside or outside your body!!! Inside is "autoimmune disease" (liver, lungs, heart, bones, joints, muscles, fluids, ie. lupus, rheumatoid arthritis, celiac's, etc.), outside is just recognized as simple "allergies" (food, drinks, grass, dust, mold, etc). Simple allergies are still an autoimmune response but not considered and autoimmune disease by doctors. I still don't understand that with both being an abnormal autoimmune response caused by high histamine. It is believed that histadelia is genetically inherited. Is histadelia genetically inherited or is some sort of genetic weakness in the liver inherited?! Still pondering on that one. The reason I ask myself this is because I have mild fatty liver disease caused by prescription medications. Medications that normally wouldn't cause this kind of damage to the liver in others without a genetically inherited weakness in the liver of some sort. I also have high histamine, since childhood, that lead to my autoimmunity. I have a family history of alcoholism, I am not and alcoholic but I do enjoy an occasional drink and have drank to get some kind of relief from symptoms but again not enough to cause liver disease in the average individual. Alcohol (acetylaldehyde) is a natural antihistamine! My family and I are very driven to drink alcohol, we all have a very high tolerance, and it makes us feel better than ever! I know that for a brief period of time before I was diagnosed with high histamine and autoimmunity, my drive to drink for relief was unbearable at times and drinking decreased most of my symptoms. I was functional. SAD, but I was more functional drunk than sober. So I guess what I'm wondering is: Do I have a genetically inherited weakness in my liver, causing high histamine from undermethylation, mitochondrial dysfunction, and deficiencies which drove me to drink on occasion as a form of self medication without even knowing what I was treating??? Undermethylation causing high histamine could actually be what leads to various addictions. People that suffer this underlying undiagnosed condition are driven to self medicate instinctively. Alcoholism is said to be inherited. Maybe alcoholism is not inherited but the underlying disorder of undermethylation is, and that's how some self medicate without knowing they are treating an underlying disorder. My mother had a form of hepatitis as a child and it damaged her liver. Could that have turned on some sort of bad DNA from the damage and she passed it on to me? Just food for thought. Some of us can not handle the toxic overload from various sources including things in foods, pollution in the air, what's in our drinking water, medications, chemicals we use to wash our bodies, hair, etc. I could go on forever with things we are exposed to daily that are toxic and we don't even think about it. Those individuals like ourselves must have some kind of underlying genetic weakness (assuming it has to do with the liver) and we end up with methylation, mitochondrial, immune system dysfunction. Anyone can suffer from methylation issues but what triggered the malfunction? Who knows with everything we are exposed to!!! It could literally stem from things our parents were exposed to that altered (turned on/off) their DNA and it was passed to us or we've carried the DNA and we were exposed to something(s) that turned ours on/off. I'm like a 2 year old child always asking why, why, why, lol! I know what's wrong with me, Yes, but WHY? What's the underlying source? I believe my source and many others source of medical problems is undermethylation and high histamine. Especially in children that suffer ADD/ADHD, autism, anger issues, digestive disturbances, etc. These things in children are just common everyday things that doctors diagnose and treat with drugs without ever searching for the underlying source. What happens when they grow up, do they end up like us? Fearing for their lives or praying for death in their 30's. My children have very similar medical problems as me and I'm scared to death. OK, so sorry for babbling everyone! Here's some links that help me put pieces together:http://www.dramyyasko.com/nutrigenomic-testing-and-the-methylation-pathway/http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspxhttp://www.drkaslow.com/html/histadelia.htmlhttp://www.healthrecovery.com/HRC_2006/Depression_06/D_roller_coaster.htmMy Autoimmune Disorder:http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-1http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-2http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awarenss-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-3http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4Explanation of allergies and high histamine:http://hubpages.com/_wrongdiagnosis/hub/Explanation-of-Allergies-Best-Allergy-Relief-Natural-Antihistamineshttp://www.rainbowminerals.net/histamine_factor.htmlI know, lots to read, I'm patient. Hope everyone has a great day! Lori
    Sherah 6 Replies Flag this Response
  • Well, I signed up and spent half the day yesterday, pretty much writing a rough draft of my article with sources and links. Still not showing and not sure it will. I'll wait a few days and see, if not I'll try to copy and paste it again. So Sorry!
    Sherah 6 Replies Flag this Response
  • Ok, signed up so we'll see about the links I'm going to post. Completely understand the "functional again" and "no time". Work was rained out AGAIN today so I've spent some time finding some sources that may benefit. Please understand, if you read my hubpage articles, they are written for everyone to understand and not just the medically or scientifically inclined. They are about what has happened to me and my theories based on undermethylation causing histadelia. I haven't had time to write or even publish my article on the methylation cycle "The Vicious Cycle", it's still in the works. I do have some of my resources for the article on undermethylation and 1 article published so far on my theories based on toxic exposures causing undermethylation leading to high histamine and then leading to various autoimmunities based on genetic weaknesses. Proper mitochondrial function relies on the methylation of carnitine, CoQ10, and a few others. If undermethylation is occurring for what ever reason then the mitochondria do not function properly, produce enough ATP, and our organs do not have the energy they need to function properly. Our liver controls histamine levels, certain methyl conversions, detoxification, etc. When the liver is overburdened with toxins, damaged, diseased, or has some kind of weak genetic link, these processes, many processes begin to malfunction or not be able to keep up leading to other various complications. Toxic build up begins occurring in other parts of the body, ie. intestines, blood, brain, etc. Causing the immune system to literally go haywire and not be able to recognize the good guys from the bad guys. Methylation is where methyl groups bind to various vitamins, minerals, amino acids, etc. and a conversion takes place triggering hundreds of responses in our bodies to be able to function normally. (This is the very short version, lol). It is responsible for turning on or turning off good/bad DNA. DNA that is obviously genetically inherited. One of those functions is in our immune system and regulation of histamine levels, with the liver controlling how much histamine stays and how much is removed. When histamine levels become abnormally high, various autoimmune responses begin taking place. Your immune system then begins to recognize normal substances, even within your own body, as foreign and it attacks causing autoimmunity. This is what happened to me because of lack of diagnosis and treatment. Now, for someone else who sufferers undermethylation and high histamine, it depends on their DNA. What bad DNA gets turned on and what good DNA gets turned off. Your autoimmunity or reactions could be anything, especially things that run in family history. Mild hayfever could turn into disabling symptoms and/or life threatening reactions without ever showing visible physical allergic symptoms. Could literally be anything inside or outside your body!!! Inside is "autoimmune disease" (liver, lungs, heart, bones, joints, muscles, fluids, ie. lupus, rheumatoid arthritis, celiac's, etc.), outside is just recognized as simple "allergies" (food, drinks, grass, dust, mold, etc). Simple allergies are still an autoimmune response but not considered and autoimmune disease by doctors. I still don't understand that with both being an abnormal autoimmune response caused by high histamine. It is believed that histadelia is genetically inherited. Is histadelia genetically inherited or is some sort of genetic weakness in the liver inherited?! Still pondering on that one. The reason I ask myself this is because I have mild fatty liver disease caused by prescription medications. Medications that normally wouldn't cause this kind of damage to the liver in others without a genetically inherited weakness in the liver of some sort. I also have high histamine, since childhood, that lead to my autoimmunity. I have a family history of alcoholism, I am not and alcoholic but I do enjoy an occasional drink and have drank to get some kind of relief from symptoms but again not enough to cause liver disease in the average individual. Alcohol (acetylaldehyde) is a natural antihistamine! My family and I are very driven to drink alcohol, we all have a very high tolerance, and it makes us feel better than ever! I know that for a brief period of time before I was diagnosed with high histamine and autoimmunity, my drive to drink for relief was unbearable at times and drinking decreased most of my symptoms. I was functional. SAD, but I was more functional drunk than sober. So I guess what I'm wondering is: Do I have a genetically inherited weakness in my liver, causing high histamine from undermethylation, mitochondrial dysfunction, and deficiencies which drove me to drink on occasion as a form of self medication without even knowing what I was treating??? Undermethylation causing high histamine could actually be what leads to various addictions. People that suffer this underlying undiagnosed condition are driven to self medicate instinctively. Alcoholism is said to be inherited. Maybe alcoholism is not inherited but the underlying disorder of undermethylation is, and that's how some self medicate without knowing they are treating an underlying disorder. My mother had a form of hepatitis as a child and it damaged her liver. Could that have turned on some sort of bad DNA from the damage and she passed it on to me? Just food for thought. Some of us can not handle the toxic overload from various sources including things in foods, pollution in the air, what's in our drinking water, medications, chemicals we use to wash our bodies, hair, etc. I could go on forever with things we are exposed to daily that are toxic and we don't even think about it. Those individuals like ourselves must have some kind of underlying genetic weakness (assuming it has to do with the liver) and we end up with methylation, mitochondrial, immune system dysfunction. Anyone can suffer from methylation issues but what triggered the malfunction? Who knows with everything we are exposed to!!! It could literally stem from things our parents were exposed to that altered (turned on/off) their DNA and it was passed to us or we've carried the DNA and we were exposed to something(s) that turned ours on/off. I'm like a 2 year old child always asking why, why, why, lol! I know what's wrong with me, Yes, but WHY? What's the underlying source? I believe my source and many others source of medical problems is undermethylation and high histamine. Especially in children that suffer ADD/ADHD, autism, anger issues, digestive disturbances, etc. These things in children are just common everyday things that doctors diagnose and treat with drugs without ever searching for the underlying source. What happens when they grow up, do they end up like us? Fearing for their lives or praying for death in their 30's. My children have very similar medical problems as me and I'm scared to death. OK, so sorry for babbling everyone! Here's some links that help me put pieces together: http://www.dramyyasko.com/nutrigenomic-testing-and-the-methylation-pathway/ http://my.clevelandclinic.org/disorders/Mitochondrial_Disease/hic_Mitochondrial_Disease.aspx http://www.drkaslow.com/html/histadelia.htmlhttp://www.healthrecovery.com/HRC_2006/Depression_06/D_roller_coaster.htm My Autoimmune Disorder: http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-1 http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-2 http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awarenss-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-3 http://hubpages.com/_wrongdiagnosis/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4 Explanation of allergies and high histamine: http://hubpages.com/_wrongdiagnosis/hub/Explanation-of-Allergies-Best-Allergy-Relief-Natural-Antihistamines http://www.rainbowminerals.net/histamine_factor.html I know, lots to read, I'm patient. Hope everyone has a great day! Lori Hi Lori, When you are a new member it sometims takes a while for your post to show up - but here is is!! Thank you for taking the time to share all of this. I haven't read it yet, but will asap, just wanted to post and say thanks. Velha
    velha508 321 Replies Flag this Response
  • Hi Lori, When you are a new member it sometims takes a while for your post to show up - but here is is!! Thank you for taking the time to share all of this. I haven't read it yet, but will asap, just wanted to post and say thanks. VelhaYour very welcome Velha! YAY, there it is!!! Thank goodness, I was getting irritated, lol. I do hope it helps everyone here looking for answers. I like to think that I could cure myself and my children completely if I had the money. There's so many other supplements that I would like to try out and see if I could completely cure my autoimmunity and other issues but they're so blasted expensive. I'm able to get the life saving necessities to allow remission and functionality for now but I do hope to achieve a full blown cure someday! :) I pray that everyone here is able to accomplish this as well!!!
    Sherah 6 Replies Flag this Response
  • http://www.comcast.net/articles/news-general/20100517/NEWS-US-ADHD-PESTICIDES/Part of our toxic overload affecting liver function and causing methylation cycle dysfunction. Wow, they're finally waking up!!! So funny that this was the first article staring me in the face when I logged on to comcast tonite.
    Sherah 6 Replies Flag this Response
  • Velha- So glad you mentioned the methylation cycle! Most have no idea what it even is. I am very familiar with this condition but it is very difficult to explain so I've only included some info on my high Ige (theoretically called histadelia). I mentioned this cycle to my Immunologist/Internal Med Specialist and he didn't have a clue as to what I was talking about. I have suffered the fatigue you mentioned for many years, low BP as well, amongst many other symptoms. The ultimate cause of my high Ige and my autoimmunity is caused by undermethylation, I believe. I have had a great response to the active vitamins/minerals. Especially the methyls. My digestive was completely destroyed suffering from severe gastroparesis and anaphylaxis causing me to vomit blood and bile. I had little absorption from food or regular vitamins. Unfortunately the methylation/undermethylation cycle is only considered a theory of a brilliant scientific researcher. Therefore, not taught to the medical profession or even recognized as a medical condition causing serious medical problems. Doctors love to hand out drugs like candy for all of the symptoms it produces and most trust they're doctors/drugs, never do they're own research, and never get better. They just cover up the symptoms but never treat/cure the source of the problem. Methionine ( specifically SAMe), methyl B12, vital amino acids, active vitamins/minerals etc. are extremely important. You did a wonderful job of explaining the mitochondrial/ ATP connection, Kudos. I do not believe I have actual mitochondrial damage (maybe a little but not MELAS), but I do believe my mitochondrial performance and production of ATP was greatly hindered by lack of methylation. The colon cleanse/detox/probiotics helped to get out all the toxins built up inside my body, followed by a regimen of the active, liquid vitamin/mineral supplements, and my own form of immunotherapy for my autoimmunity have made miraculous changes in me. I am currently working 3 jobs, one of which is devoted to helping others with rare autoimmune diseases and ongoing/undiagnosed medical problems. Still having some very minor issues about 1 week a month due to hormonal flux but I don't even really notice it compared to what I was suffering before. Wish others would do their own research and take their health into their own hands, could save so many lives and give back quality of life. I too was majoring in bio/chem years ago and had a very big set back in my education due to my health. I'm so glad you're using your education to help others. That is my ultimate goal as well. Although I have not had the extensive training and education you have had, I have extensively researched and studied for the last 15yrs. I am able to completely understand as well as being very familiar with the things you are talking about. May be difficult for some with out a medical or science background, it's a pretty complicated cycle. I could not explain the things you have mentioned as easily or briefly as you have, much appreciated by me and others. Thank You! I was actually getting ready to publish an article on the methylation cycle and how it affects histamine levels/causes autoimmunity, "The Vicious Cycle". It is my niche on hubpages. My story about my condition and treatment is published there, excluding the more scientific details of the methylation cycle. The series is called "I'm Allergic to My Hormones", WD won't let me post the link so you'll have to do a search if your interested in reading. I would love for you to take a look and see what else I could do to possibly cure myself. I am currently in remission by my own doing but not cured as of yet. Still researching!!! I first want to say, god bless you to you who went and fought for peoples lives on 9/11 which is my birthday. I am 22 now, and i have never been an 'elite' athlete, but i am intreged in all sorts of remedies that conclude some peoples life long struggles, as my significant other is constantly in the hospital, and ive already gone through losing my mother when i was 10 and too many more to count. So to me, trying to understand other peoples way of thinking when they feel their hitting rock bottom to me is upmost important, because sometimes you forget what your living for, being consumed in the here and now. Sometimes you forget how beautiful life once was at that moment when you think it couldnt get any better, but after a few ones that do make you want to 'check out' you find yourself in that moment where your even more glad to be alive. Everyone has a struggle, some are more apparent to others, some arent. Everyone gets down, and we all need that someone to pull us back on board even if they dont know their doing it for us. Just remember, there is always an end to whatever's begun. You are not being punished at all, if anything you just caught a very unfortunate situation, but it was meant for you to have it, as you are an out going person, who will seek the answers and scream it for the world to hear, just so that person who isnt quite like you, who goes meekly without a sound, but is going through exactly what you are but too afraid to ask, and/or no hope to even begin, your helping THEM. Every endevour has a purpose. And sometimes we cant always see the shining pot of gold at the end waiting for us, or see the reasons, but theres always a reason why your going through what you are. Just keep that in mind, because as accomplished as you are, and the hand you've been dealt - your playing your cards for a higher power, and all their bets are on you. Good luck. Take care.
    jennrie 2 Replies Flag this Response
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