Phlebotomy anyone?
M, Good for you! Who will do the needle insertion ? etc...I am calling the english doc today to see if the lab is going ahead with genetic test,,,I haven't heard a word...I am really getting pissed..G oing to try to scrape the $ and order by cheque (no c cards)..This has to stop. Why is it not illegal to refuse testing on clinical basis. I think I have porph as well Bethr...
Well I'm on day 15 of my cycle and I'm starting to experience something. My heart is trembling, just a bit, lower back pain that doesn't respond to aspirin (my other joint pain does). I've cut out Porph triggers, like nitrates and sulphites. Theres quite a list to stay away from, I don't drink alcohol or take any drugs, never have, so nothing to change there. I'm sure this is an attack from a combination of the high iron, dentist injection containing sulphites (that's happened twice now and is obviously a major trigger).
My sister has always been highly chemical sensitive, she can hardly walk past the washing powders at the supermarket without hanging on to the trolley to steady herself, but not me, just the chronic rash I had whilst on contraceptives for about 18 years or so. My son reacts to sulphites, a few specific colours, and oranges of all things! I could never figure that one out, but have just read that Porphs react to Balsam which is in citrus, and it's all fitting into place. He was on a special diet for years under a dietitian and not once was Porphyria ever mentioned, he had violent neurological reactions to some foods, but doesn't seem to be reacting since he did a big grow spurt at around 10 years (he's 14 now).
If my rash comes back on day 21 (progesterone peaks on day 20) that will confirm it for me and I'll probably contact our national Porphyria Clinic, it's a plane flight away, but I just don't have the time to be shoved around specialists all this year while they cross off what it is not!
Sorry for the big spiel, it's so damn frustrating.
till awaiting my brothers Porph test results and HH too.
I'm not sure if I've put this link in before but it refers to a family with MS/Porphyria in South Africa found by a S.African Genetisist.
They are of the anemic kind and respond to iron supplements.
http://users.stargate.net/~rnr/research.html
This is the Lab website http://www.gknowmix.com/GeneticTests/Ir ... creen.aspx
My sister has always been highly chemical sensitive, she can hardly walk past the washing powders at the supermarket without hanging on to the trolley to steady herself, but not me, just the chronic rash I had whilst on contraceptives for about 18 years or so. My son reacts to sulphites, a few specific colours, and oranges of all things! I could never figure that one out, but have just read that Porphs react to Balsam which is in citrus, and it's all fitting into place. He was on a special diet for years under a dietitian and not once was Porphyria ever mentioned, he had violent neurological reactions to some foods, but doesn't seem to be reacting since he did a big grow spurt at around 10 years (he's 14 now).
If my rash comes back on day 21 (progesterone peaks on day 20) that will confirm it for me and I'll probably contact our national Porphyria Clinic, it's a plane flight away, but I just don't have the time to be shoved around specialists all this year while they cross off what it is not!
Sorry for the big spiel, it's so damn frustrating.
till awaiting my brothers Porph test results and HH too.
I'm not sure if I've put this link in before but it refers to a family with MS/Porphyria in South Africa found by a S.African Genetisist.
They are of the anemic kind and respond to iron supplements.
http://users.stargate.net/~rnr/research.html
Dr Maritha Kotze who did this study has interest in hemochromatosis and MS and did the study of MS and C282Y carriers and found that they develop MS younger than counterparts. Funny that hmmmm. But that C282Y genes were no more prevalent in MS than in the normal population. I know that study is on the Phlebotomy thread somewhere already.Project Significance
The significance of this project lies in the recognition of a possible new subtype of MS, which may be treatable by iron supplementation. Further studies of patients with this phenotype may provide the missing link between environmental triggers (e.g. infections, hormones, heavy metal intoxication), autoimmunity and genetic factors in the etiology of MS, via the heme biosynthesis pathway.
As evidenced by several years of research, family history, and a long series of laboratory tests, this particular form of MS appears to be hereditary and biochemical. The nervous system damage may be related to a derangement of heme synthesis in the liver during periods of anemia.
This is the Lab website http://www.gknowmix.com/GeneticTests/Ir ... creen.aspx
Last edited by Bethr on Wed Mar 17, 2010 11:37 pm, edited 1 time in total.
Bethr-that is a major find about the anemia/MS subgroup. It is still all iron metabolism... but this may provide people with anemia another avenue for testing if they can afford it. People really do have to test to find out where they are messed up. It is so easy... we are going to be running into major amounts of professional jealousy. So-called healthcare "professionals" that will not be able to accept it is as easy as a blood test. That will be the major hurdle to get over, that it's mostly iron metabolism. Easy to test and verify.
Actually, it will be more than professional jealousy. I truly wonder how many people really want to see us better because of the reputations on the line, the amount of money invested in drug therapies, the fact that we were supposed to be incurable. I think of the number of books that have been written with all of the advice that will turn out to be a crock. When I think of the green garbage bags full of supplements, the sauna, the Bio resonance testing, the money I spent on chelation, the food allergy testing, the diet therapies... a lot of people made their living telling people with MS what they should do... no wonder none of it worked, you can't think your way out of hemochromatosis, you can't fool those genetics. We are congenitally programmed to absorb too much iron, those of us with iron loading. No wonder nothing worked for me, and no wonder menopause really speeded up the whole meltdown. They kept saying it was hormones, that I should keep playing with the progesterone/estrogen/DHEA/cortisol... they're probably all screwed up due to the iron and pituitary poisoning. No wonder my thyroid got nuked! We have been told a load of crap over the years, so much for "MS experts", they had it all wrong.
I think it will be interesting to see my Dr.'s reaction on the 31st. I am going to tell him that have bunch of us are finding we have a type of subclinical hemochromatosis and now I am not the only one pursuing phlebotomy as therapy, but that some are having a hard time convincing the Dr. that it's necessary. I want to see what his professional reaction is, whether he is happy for the discovery or whether he will roll his eyes. I don't see him that often, so I don't really have a good handle on his personality, maybe he will be willing to jump on board, or maybe they will accuse me of perfidy.
Who is Merlyn?
Merlyn is from a large Catholic family, she has five brothers and sisters, none who are showing signs of MS. Frankly, she has been jealous of that the last couple of years, it did not seem fair. Not that she wished disability on anyone at all, but it just seemed like too much to bear sometimes. She cannot go to family reunions, she cannot live a normal life.
Merlyn went to the University of New York at Buffalo in the mid-70s, studied nutrition. But her husband decided to pursue a PhD in Eugene Oregon. We moved there in the late 1970s, but they did not have a nutritional program, so she switched to English literature, probably due to the Irish love of language. Finances forced a move back to Canada, Calgary Alberta, where hubby entered the IT field because it suited his skill set. I worked for the Royal Bank of Canada for a while, then returned to the University of Calgary and completed a BA in English. And I started a job share at the University of Calgary because I wanted time to write. I maintained a lifelong interest in nutrition, and read prolifically, always have my head in a book. I think this gave me an ability to consume vast amounts of material, and to analyze what I was reading.
The reason I am writing this down is that I do not consider myself to be some form of nonprofessional that does not have any idea about health/medicine. I think my skill set was more suited to looking at material that may have been viewed before and seeing it in a different light. I did not have the dogmatic influences that may have prevented me from seeing the relationship between hemochromatosis and genetics and MS. I mean it is all there, so obvious once you make the link. Bethr is the same, as a historical researcher she is not brainwashed/blinded by preconception. I think this is been a major major advantage. The medical community doesn't realize it yet, but we have unveiled a mystery, made it transparent. Please get in iron metabolism panel and join this family of iron loading heterozygote/hemochromatosis/genetic mutants LOL
Merlyn is from a large Catholic family, she has five brothers and sisters, none who are showing signs of MS. Frankly, she has been jealous of that the last couple of years, it did not seem fair. Not that she wished disability on anyone at all, but it just seemed like too much to bear sometimes. She cannot go to family reunions, she cannot live a normal life.
Merlyn went to the University of New York at Buffalo in the mid-70s, studied nutrition. But her husband decided to pursue a PhD in Eugene Oregon. We moved there in the late 1970s, but they did not have a nutritional program, so she switched to English literature, probably due to the Irish love of language. Finances forced a move back to Canada, Calgary Alberta, where hubby entered the IT field because it suited his skill set. I worked for the Royal Bank of Canada for a while, then returned to the University of Calgary and completed a BA in English. And I started a job share at the University of Calgary because I wanted time to write. I maintained a lifelong interest in nutrition, and read prolifically, always have my head in a book. I think this gave me an ability to consume vast amounts of material, and to analyze what I was reading.
The reason I am writing this down is that I do not consider myself to be some form of nonprofessional that does not have any idea about health/medicine. I think my skill set was more suited to looking at material that may have been viewed before and seeing it in a different light. I did not have the dogmatic influences that may have prevented me from seeing the relationship between hemochromatosis and genetics and MS. I mean it is all there, so obvious once you make the link. Bethr is the same, as a historical researcher she is not brainwashed/blinded by preconception. I think this is been a major major advantage. The medical community doesn't realize it yet, but we have unveiled a mystery, made it transparent. Please get in iron metabolism panel and join this family of iron loading heterozygote/hemochromatosis/genetic mutants LOL
I'm really starting to wonder what's going on here...called the dr office again today to ask is he really waiting for lab to run test (genetic)receptionist SAID HE'D CALL BACK...NO CALL...M, I really do think they've been directed to ignore/avoid these requests. This is the 2nd dr on this same direct request. When I said I would do it privately and pay..he says no,no bla bla
Katie45-I'm sorry you're having such a runaround. Makes you wonder doesn't it, they say they want preventative medicine, but then they do stuff like this. I will write up a summation over the weekend of our findings and I will try to generate some interest from people like Raymond Peat. I do not have a doctors appointment until the 31st, so I am holding pattern. I would like him to test ferritin again, but I have read a couple reports have questioned how accurate ferritin is for reflecting total iron body accumulation. I think I have more than 6 g in storage sites or I would not be this debilitated. It is that or there are other metals on board like mercury.
It's not like they don't know what heavy metals do to the body... iron is one of them... here's a new chelator, yet another one to add to the hundreds already out there...
http://www.mhpvitamins.com/id147.html
One of the things that heavy metals do is shut down the liver detox pathways... now they say there is a detox pathway III?
http://www.quicksilverscientific.com
This really is not off topic, because all heavy metals, including iron, can do a number on your health because they affect organ function, hormone function, neurotransmitter synthesis etc. etc.
http://www.mhpvitamins.com/id147.html
One of the things that heavy metals do is shut down the liver detox pathways... now they say there is a detox pathway III?
http://www.quicksilverscientific.com
This really is not off topic, because all heavy metals, including iron, can do a number on your health because they affect organ function, hormone function, neurotransmitter synthesis etc. etc.
http://xnet.kp.org/permanentejournal/wi ... tosis.html
The biomedical literature contains little discussion of nervous system effects caused by systemic iron overload disease. However, clinical depression that is out of character for the individual occasionally occurs and is reversed by phlebotomy.33 Mild dementia not confounded by coincident alcoholism or liver failure may develop rapidly and is reversed by phlebotomy.34 Profound fatigue, too, may develop suddenly and is reversed by phlebotomy.34 The brain in hemochromatosis contains a large amount of iron, and a prominent neuropeptide-like distribution pattern of transferrin receptors in the brain suggests that transferrin may have a neuromodulating function.35 Deafness is well known to be associated with hemochromatosis.3 Less clear is whether peripheral neuropathy, in the absence of diabetes, and tinnitus are also associated with hemochromatosis.