Katie-
Do you have any older blood tests re: iron level? Pre IP6?
I have had my iron levels taken, and am now starting IP6 (as well as EDTA Chelation)--so I have pre-IP6 levels--when I get my blood tested next time, will post. Will be interesting to see if the iron does indeed decrease.
Phlebotomy anyone?
Merlyn, I'm still a bit confused here. Can you put me right?
I was given a dx of MS in the 1980's. No one has said what type, but as I've had a continual progression I've assumed PPMS. I've never had an MRI because at the beginning the machines were not common. So the dx was based on observation, bladder malfunction, and increasing disability.
More recently I refused an MRI as there didn't seem any point in putting myself through that experience just so the neurologist could add to his bits of paper - it wasn't going to benefit me. But I don't know where I stand right now.
Now that I've got this genetic test result of CYS282Tyr (which I've read is something different to straight CYS282) I don't know if I have MS as well, or whether this means I just have a mild form of Haemachromotosis which can be treated by phlebotomy. Can you sort me out please?
I was given a dx of MS in the 1980's. No one has said what type, but as I've had a continual progression I've assumed PPMS. I've never had an MRI because at the beginning the machines were not common. So the dx was based on observation, bladder malfunction, and increasing disability.
More recently I refused an MRI as there didn't seem any point in putting myself through that experience just so the neurologist could add to his bits of paper - it wasn't going to benefit me. But I don't know where I stand right now.
Now that I've got this genetic test result of CYS282Tyr (which I've read is something different to straight CYS282) I don't know if I have MS as well, or whether this means I just have a mild form of Haemachromotosis which can be treated by phlebotomy. Can you sort me out please?
Trent-you are asking questions I cannot answer, because we are in uncharted waters! Do we just have a form of subclinical hemochromatosis, or do we have "MS"? What is MS? What causes it? All of the scientific studies that casually note that heterozygotes can overload iron do not follow up on that observation. I cannot find a single study that follows the outcome of decades of iron overloading! It is like we are some poor relative that has been relegated to obscurity.
As far as I know, I will be the first person in the world to try to treat Primary Progressive MS with phlebotomy! I have optimistic expectations, especially based on the first phlebotomy, but I cannot state unequivocably that I will abolish all "MS" symptoms. From my understanding of heavy metal toxicity, if you get rid of the heavy metal, in this case iron, there is a good chance you will correct the pathology. But since we are pioneers here, there are no studies to back up my assertions. You will have to be comfortable with trying phlebotomy, and watching how you react.
For me, I don't believe I have any other options but to pursue this. I have been deteriorating at an alarming rate since menopause, I am not interested in surgery or drugs because I don't believe they treat the underlying toxicity. My environmental illness doctor shuns labels, and basically maintains that it's all just toxicity. The toxicity can cause any symptom, can alter immune response, cause inflammation... get rid of the toxicity and the body can heal. But I would caution that if you are not comfortable being a lab rat, that is also a choice, to do nothing with your discoveries and wait for others to be Trailblazers. I go for my next phlebotomy on Tuesday, and I will report as soon as I am done. Who knows how I will react to the second one, hopefully as good as the first one, even better. But I have to repeat here, that I am comfortable with doing this, and I am generally very healthy. I have corrected my hormones, and I don't really have any other health issues like diabetes or anything.
As far as I know, I will be the first person in the world to try to treat Primary Progressive MS with phlebotomy! I have optimistic expectations, especially based on the first phlebotomy, but I cannot state unequivocably that I will abolish all "MS" symptoms. From my understanding of heavy metal toxicity, if you get rid of the heavy metal, in this case iron, there is a good chance you will correct the pathology. But since we are pioneers here, there are no studies to back up my assertions. You will have to be comfortable with trying phlebotomy, and watching how you react.
For me, I don't believe I have any other options but to pursue this. I have been deteriorating at an alarming rate since menopause, I am not interested in surgery or drugs because I don't believe they treat the underlying toxicity. My environmental illness doctor shuns labels, and basically maintains that it's all just toxicity. The toxicity can cause any symptom, can alter immune response, cause inflammation... get rid of the toxicity and the body can heal. But I would caution that if you are not comfortable being a lab rat, that is also a choice, to do nothing with your discoveries and wait for others to be Trailblazers. I go for my next phlebotomy on Tuesday, and I will report as soon as I am done. Who knows how I will react to the second one, hopefully as good as the first one, even better. But I have to repeat here, that I am comfortable with doing this, and I am generally very healthy. I have corrected my hormones, and I don't really have any other health issues like diabetes or anything.
protec-thanks for the article.
I just keep concluding that I want the iron level low in my body. Get rid of the excess iron, calm down the immune system, reduce inflammation... it's the best approach I can think of, the safest, the one that will address the root cause.
LDN probably works by influencing the T cells, I believe the most success they've had with the LDN is with Crohn's. If we absorb too much iron and it remains in the gastrointestinal system, especially in the villi, it is going to upset the immune system. It would seem like a foreign invader.Chorney and colleagues Wen-Jie Zhang and Walter Koltun in Hershey’s department of surgery have been studying inflammatory bowel diseases, including ulcerative colitis and Crohn’s disease. Inflammatory bowl diseases are widespread in western society; some medical researchers blame them on our iron-rich diet. The afflictions arise when tissues lining the gastrointestinal system are attacked by the body’s immune system.
I just keep concluding that I want the iron level low in my body. Get rid of the excess iron, calm down the immune system, reduce inflammation... it's the best approach I can think of, the safest, the one that will address the root cause.
http://www.news-medical.net/?tag=/Hemochromatosis
Our body needs most of its iron to make red blood cells. A lack of the metal can lead to dangerous anemias, but also too much iron can be detrimental as iron promotes the formation of toxic radicals leading to tissue damage. Iron overload is the consequence of one of the most common genetic disorders in Europe, hereditary hemochromatosis, which affects about one in 300 Europeans. Excess iron also accumulates after repeated blood transfusions and can cause organ failure over time. Günter Weiss, a clinician from the Innsbruck Medical University, and his collaborators from the University of Heidelberg and EMBL now found out that nifedipine, a substance commonly used to control blood pressure, helps the body deal with too much iron.
“We observed in mice with iron overload that nifedipine helps mobilise iron from stores in the liver and enhances its excretion into the urine,” says Weiss, an EMBL alumnus who now heads a lab at the Department for General Internal Medicine at the University of Innsbruck. “These effects make nifedipine a promising candidate for a new drug to treat hereditary hemochromatosis and other iron overload disorders.”
I spoke last night to a very very interesting man. I don't know why I called, but I was lucky enough to get a hold of Steve.
I have asked him to join in, and I hope he does. The information I gleaned from him was absolutely astounding. He related a tale of a man with epilepsy that had a ferritin level of 26,000! He was having grand mal seizures constantly, and it took a long time to reduce his iron levels through phlebotomy, but he no longer has any problems! He said that usually one or two phlebotomies can relieve the pressure for macular degeneration, save a person's eyesight. He also said he knew of no one that had ever done phlebotomy for multiple sclerosis, but he wanted to stay in contact to see how it all turns out. He predicts a full recovery.
How do we get more people to run simple iron panels? It is so stupidly simple! I cannot believe all of the suffering over one heavy metal: iron.
He also said to not worry about the genetics! There are so many mutations for hemochromatosis, the labs do not test for all of them, and if you are loading iron, so what about the genetics... it doesn't really matter you are still loading iron! So that will save people a bunch of money. For me, it was an extra piece of ammunition, and that is going to be the problem, convincing doctors that multiple sclerosis is simply the result of iron poisoning. We are just one little segment on a huge website, and trying to get people to understand what is really going on is going to be difficult. What I really need is some big-name doctor to become a witness to my recovery. Steve also said from my numbers I have hemochromatosis, not subclinical hemochromatosis, but full-blown. That I could have another genetic mutation causing the full-blown iron loading, but really it's not important to identify the genetic mutation, the important thing is to reduce the iron. He mentioned EDTA IVs as being effective sometimes, but for me I have no interest in that due to financials and the fact that I have done so much chelation without the same results has one phlebotomy. We have cracked the mystery, and it is so simple I am kind of angry on one level. Simple iron panels can unmask the cause of multiple sclerosis??? And the solution is also here and now, not 10 years from now, it exists in this moment!
http://www.ironoverload.org/brain.html
I have asked him to join in, and I hope he does. The information I gleaned from him was absolutely astounding. He related a tale of a man with epilepsy that had a ferritin level of 26,000! He was having grand mal seizures constantly, and it took a long time to reduce his iron levels through phlebotomy, but he no longer has any problems! He said that usually one or two phlebotomies can relieve the pressure for macular degeneration, save a person's eyesight. He also said he knew of no one that had ever done phlebotomy for multiple sclerosis, but he wanted to stay in contact to see how it all turns out. He predicts a full recovery.
How do we get more people to run simple iron panels? It is so stupidly simple! I cannot believe all of the suffering over one heavy metal: iron.
He also said to not worry about the genetics! There are so many mutations for hemochromatosis, the labs do not test for all of them, and if you are loading iron, so what about the genetics... it doesn't really matter you are still loading iron! So that will save people a bunch of money. For me, it was an extra piece of ammunition, and that is going to be the problem, convincing doctors that multiple sclerosis is simply the result of iron poisoning. We are just one little segment on a huge website, and trying to get people to understand what is really going on is going to be difficult. What I really need is some big-name doctor to become a witness to my recovery. Steve also said from my numbers I have hemochromatosis, not subclinical hemochromatosis, but full-blown. That I could have another genetic mutation causing the full-blown iron loading, but really it's not important to identify the genetic mutation, the important thing is to reduce the iron. He mentioned EDTA IVs as being effective sometimes, but for me I have no interest in that due to financials and the fact that I have done so much chelation without the same results has one phlebotomy. We have cracked the mystery, and it is so simple I am kind of angry on one level. Simple iron panels can unmask the cause of multiple sclerosis??? And the solution is also here and now, not 10 years from now, it exists in this moment!
http://www.ironoverload.org/brain.html
Merlyn,
Next time you are in contact with Steve, could you please ask him which EDTA would work?? I am using disodium EDTA (which was in all the original studies), but had to push my doctor for this--she usually uses calcium EDTA-which I read is NOT effective in getting calcium deposits out, so who knows re iron. (There is also apparently a Mg EDTA--I get Mg added to my infusion).
Anyway, might be of real help to me, and others, to know.
Thanks
Next time you are in contact with Steve, could you please ask him which EDTA would work?? I am using disodium EDTA (which was in all the original studies), but had to push my doctor for this--she usually uses calcium EDTA-which I read is NOT effective in getting calcium deposits out, so who knows re iron. (There is also apparently a Mg EDTA--I get Mg added to my infusion).
Anyway, might be of real help to me, and others, to know.
Thanks
http://www.ncbi.nlm.nih.gov/pubmed/19195795
Steve said that the brain heals, that they have seen time and time again full recovery from iron overload, that the brain recoups! That is why I am expecting full recovery.
Steve said that the brain heals, that they have seen time and time again full recovery from iron overload, that the brain recoups! That is why I am expecting full recovery.
Katie-we are so on the cutting edge, we are going to have to be diligent and patient and spread the word, and I expect the battle to be long. When I think of the billions of dollars invested in MS drug therapies, it is mind-boggling that we can be treated inexpensively and safely and effectively and get our lives back! When I think of how my life was eviscerated by this condition, I will work tirelessly to inform the world there is a cure. I also expect to be vilified or assassinated LOL
This may turn out to be like an Internet Reality Show where we watch people recover when they get the proper treatment. It's a good thing LDN did not work for me or I might've stopped the search. I live in this beautiful area, I am looking forward to walking on the beach, hell I am looking forward to walking!
This may turn out to be like an Internet Reality Show where we watch people recover when they get the proper treatment. It's a good thing LDN did not work for me or I might've stopped the search. I live in this beautiful area, I am looking forward to walking on the beach, hell I am looking forward to walking!
Hi everyone, back from my beach holiday. We got evacuated because of the tsunami at 5am Sunday morning! 
Sirens were going, Civil Defence with loud hailers, it was a rude awakening, but ended up being a bit of a non-event, the sea sucked out and in in small increments most of the day, but it was quite gentle.
I've started sleeping in the afternoons again every day, and I'm waking up in the middle of the night again for a few hours. Here we go again, these were my symptoms before the first blood take. Damn, I need another phleb now and have nowhere to turn till April. I've really enjoyed my energetic six weeks. I must admit I still feel a lot better than I did last year, but I just don't want to go backwards again, not one inch!
Sirens were going, Civil Defence with loud hailers, it was a rude awakening, but ended up being a bit of a non-event, the sea sucked out and in in small increments most of the day, but it was quite gentle.I've started sleeping in the afternoons again every day, and I'm waking up in the middle of the night again for a few hours. Here we go again, these were my symptoms before the first blood take. Damn, I need another phleb now and have nowhere to turn till April. I've really enjoyed my energetic six weeks. I must admit I still feel a lot better than I did last year, but I just don't want to go backwards again, not one inch!