Then the rash came up and I felt a bit grotty again, but it was good while it lasted. The phleb definitely made a difference to my heat tolerance and I've been wearing lighter more skin exposing clothes since then.
It's the middle of summer in NZ
Phlebotomy anyone?
Tolerance of the sun was something that changed for me immediately after the big phlebotomy. I haven't been out in the sun for pleasure for a long while, but after the phleb I was out there doing stuff and freely sweating, which I haven't done for a long while.
Then the rash came up and I felt a bit grotty again, but it was good while it lasted. The phleb definitely made a difference to my heat tolerance and I've been wearing lighter more skin exposing clothes since then.
It's the middle of summer in NZ
Then the rash came up and I felt a bit grotty again, but it was good while it lasted. The phleb definitely made a difference to my heat tolerance and I've been wearing lighter more skin exposing clothes since then.
It's the middle of summer in NZ
Thanks for your detailed reply Merlyn.
Maybe I should get some charcoal to take.
I have MSM, NAC, DMSA, Glutathione sitting in my cupboard so I could take them perhaps.
I have had a lot of barium (I have had 4 barium meal X-rays) I have also had lots of gadolinium pumped round my body, plus I had 4 mercury fillings removed and didn't do it correctly and safely (dentist was supposed to do it with masks etc but didn't)
I hope that my only prob is heavy metals. I will give the infared a go. How do I know if I am in there too long? I don't want to damage myself anymore then I already am! As you have obviously studied iron and heavy metals to the max any other advise or anything you can advise that helped you would be appreciated.
How is your chelation going Shye?
x
Maybe I should get some charcoal to take.
I have MSM, NAC, DMSA, Glutathione sitting in my cupboard so I could take them perhaps.
I have had a lot of barium (I have had 4 barium meal X-rays) I have also had lots of gadolinium pumped round my body, plus I had 4 mercury fillings removed and didn't do it correctly and safely (dentist was supposed to do it with masks etc but didn't)
I hope that my only prob is heavy metals. I will give the infared a go. How do I know if I am in there too long? I don't want to damage myself anymore then I already am! As you have obviously studied iron and heavy metals to the max any other advise or anything you can advise that helped you would be appreciated.
How is your chelation going Shye?
x
When I got my infrared sauna, I did so because everybody kept warning me to start so slow that I could not see myself going off to the chiropractor and sitting in his sauna for 10 minutes and getting charged $35... on their website it said it was contraindicated for MS, but I got it anyway. I could only tolerate 15 minutes at a time at first, I did get up to an hour, but I really could not sweat right. This is very typical in autism also, these children cannot sweat. They do help some people, but go slow, your mileage may vary from mine. I was already using a walker when I bought my sauna.
http://www.hightechhealth.com/
http://www.hightechhealth.com/
LR1234-I had 16 fillings removed in 1998, done safely. I have no metal in my mouth, got rid of all the nickel crowns and nickel bridge. I do not regret it, it saved my life actually. I was experiencing chronic bladder infections, I had two doctors tell me I was going to die because I was developing super infections from living on antibiotics. I went to a dentist that studied with Hal Huggins, and six months after the mercury removal, the bladder infections slowly decreased and then stopped. My gums healed up, and my astigmatism vanished. But progression marched on to my disappointment...
Mercury depletes zinc, which helps to control bacteria levels and I think this was the reason my reaction was so quick as far as the infections. Up until that point I could never taste zinc sulfate (the zinc test taste). You have more tolerance for some compounds them I do. My sulfur metabolism is all deranged, so I don't tolerate DMSA or MSM or N-A-C... I can tolerate nebulizing glutathione, but it contains cysteine which I do not tolerate orally.
Mercury depletes zinc, which helps to control bacteria levels and I think this was the reason my reaction was so quick as far as the infections. Up until that point I could never taste zinc sulfate (the zinc test taste). You have more tolerance for some compounds them I do. My sulfur metabolism is all deranged, so I don't tolerate DMSA or MSM or N-A-C... I can tolerate nebulizing glutathione, but it contains cysteine which I do not tolerate orally.
My heart has started jumping around again, a bit yesterday and worse today. Not too much pain yet, but very jumpy and electric.
It is exactly 28 days (one moon cycle) since I had the wild spasticity fit. that was on a Monday too, hence my symptoms are still following my menstrual cycle. I've gone from monthly sleeping to monthly heart arrythmia!
Thank goodness I have the specialist tomorrow. This heart stuff is quite scarey and painful.
It is exactly 28 days (one moon cycle) since I had the wild spasticity fit. that was on a Monday too, hence my symptoms are still following my menstrual cycle. I've gone from monthly sleeping to monthly heart arrythmia!
Thank goodness I have the specialist tomorrow. This heart stuff is quite scarey and painful.
A great day!
Hooray! Mental relief today!
I've just come from seeing my doctor (who admits to never having had a patient with HH).
He happily acknowleges I have high iron; happily acknowleges I was right in diagnosing that my deceased mother was suffering from HH; happily acknowleges that I carry a copy of her gene CYS282Tyr; happily acknowleges that phlebotomy might help, and is contacting the haematologist at the local hospital to arrange a course of phlebotomies.
In addition, he agreed that if the haematologist should not co-operate, I can be referred to another hospital.
So the ball is rolling!
I've just come from seeing my doctor (who admits to never having had a patient with HH).
He happily acknowleges I have high iron; happily acknowleges I was right in diagnosing that my deceased mother was suffering from HH; happily acknowleges that I carry a copy of her gene CYS282Tyr; happily acknowleges that phlebotomy might help, and is contacting the haematologist at the local hospital to arrange a course of phlebotomies.
In addition, he agreed that if the haematologist should not co-operate, I can be referred to another hospital.
So the ball is rolling!
@ Merlyn, Not so sure if I can handle MSM and NAC. Been taking high doses over the last 2 weeks and have what I believe is to be a mini relapse. Pain behind eyes and increase of floaters. I have also had a cold and been drinking 3 cups of green tea a day (and I know in the past I have reacted to green tea badly) So I have now stopped all the sulphur supps for the moment, hopefully my eyes will calm down.
Had my infared sauna today, was in it for 35mins 58 degrees. I felt fine until I came out and felt a little nauseous. I was ok though. Didn't have any major bad reaction but I was only just starting to get hot when I was due to come out. I couldn't sweat.
Had my infared sauna today, was in it for 35mins 58 degrees. I felt fine until I came out and felt a little nauseous. I was ok though. Didn't have any major bad reaction but I was only just starting to get hot when I was due to come out. I couldn't sweat.
hypohidrosis or Anhidrosis. (unable to sweat) Do you reckon this could be a big problem with regards to us MSers getting rid of our heavy metals and having heat intolerance? Any suggestions of what we can do to try and sort this out?
Last edited by LR1234 on Mon Feb 22, 2010 12:46 pm, edited 1 time in total.
merlyn started this thread under the suspicion that ms is actually the result of iron overload (hemochromatosis) We beleive all of us should be tested ..there are about 3 identified gene mutations at this time ask dr for a full iron panel to be run to start..see canadian hemochromatosis Society
Last edited by katie45 on Mon Feb 22, 2010 12:21 pm, edited 1 time in total.
this is Merlyn's post
I am new here, but things are finally finally making sense. I just paid for some genetic testing and test positive for one genetic mutation of the C28CY... I don't know whether people are aware of the recent findings with MS mainly due to a vascular surgeon in Italy by the name of Zamboni. He was finding iron in the brains of MS people, the more iron the more the disability... his research prompted me to read The Bronze Killer by Marie Warder and things started to fall into place... I am now and have been for the last five years been confined to a wheelchair. My diagnosis was Primary Progressive MS, only about 10% of the cases...
Marie Warder wrote an essay back in 1993 stating that MS and Parkinson's were probably iron loading conditions. When I went to my Dr. to ask for a iron panel, he told me that I could not have a problem with iron because my hemoglobin was always normal. Well, according to Marie Warder's blog hemoglobin always is normal. I was about to accept his verdict when I went back to read her and astoundingly saw that statement about hemoglobin. I was anemic in my teens and 20s, I now suspect it was iron loading anemia. My ferritin was 66 when I tested it in December, but I gather it is the transferrin that gets screwed up in MS. So I'm going to take my genetic test back to the Dr. and request a full iron panel.
I have started to put together the reason why I have gotten so dramatically worse since menopause. It has been incredibly devastating, but I have been perimenopausal for about 10 years or more. But since the cessation of bleeding, I am so bad I have been considering doing myself in... it is so hard to live with the symptoms, spasticity, Periodic Limb Movement Disorder, purple feet, no circulation, thyroid problems, joint pain that is unreal, heat intolerance... my educated guess is that MS is actually just a form, perhaps more mild, of hemochromatosis, but the accumulation eventually results in organ damage, pituitary poisoning etc.
I recently had a most enlightening experience. When I had to give blood for the ferritin test, even that removal gave me five days of relief. The Periodic Limb Movement Disorder disappeared for five days, Mike ordination was astoundingly better, pain relief was incredible. I am primary progressive MS, you simply do not get improvement! What I need to do is phlebotomy, this is so clear to me now. My problem is probably that nobody will want to do it, that nobody will want to authorize it. Having MS, I am not allowed to give blood at the donor clinic. When I questioned them, they said they were not worried that MS could be transmitted through the blood, they were worried about the health of the donor. And of course many people with MS are so debilitated this is likely logical.
I live just outside of Victoria on Vancouver Island. Does anybody know of an open-minded hematologist in this area? I am not asking for some sort of bizarre surgery, I am simply asking to do some phlebotomy to see how much relief and improvement I can experience from it. I have been reading some of the hemochromatosis blogs out there and they are all describing some of my symptoms... I think I probably inherited this gene from my mother who had diabetes when nobody had diabetes and to was depressed her whole life. Her depression did not respond to any of the antidepressants and she committed suicide at the age of 58... she had many many more health problems that were unexplained, including one bout where she started to sweat out all of her body fluids and ended up in the hospital near-death for about three weeks. When the sweating finally ameliorated, she was left with a bizarre range of allergies... she was a large woman for most her life, but died very thin. My father was Irish, so maybe I inherited the gene from him, he died of a heart attack at age 70, after suffering very high blood pressure for many years... who knows I just have one copy of this genetic mutation.
Does anybody know, please please please, of a good hematologist or internist in the Victoria area that might listen to my request for phlebotomy??? I am in such shoulder pain I can hardly bear it.
Back to top
hatter uk
Joined: 26 Mar 2009
Posts: 44
Location: dublin
Posted: Mon Jan 25, 2010 12:53 am Post subject:
--------------------------------------------------------------------------------
Hi Merlyn,
First of all,i would like to say sorry to hear of all the troubles that you have been through.I only hope that there is light at the end of the tunnel.
I am new here, but things are finally finally making sense. I just paid for some genetic testing and test positive for one genetic mutation of the C28CY... I don't know whether people are aware of the recent findings with MS mainly due to a vascular surgeon in Italy by the name of Zamboni. He was finding iron in the brains of MS people, the more iron the more the disability... his research prompted me to read The Bronze Killer by Marie Warder and things started to fall into place... I am now and have been for the last five years been confined to a wheelchair. My diagnosis was Primary Progressive MS, only about 10% of the cases...
Marie Warder wrote an essay back in 1993 stating that MS and Parkinson's were probably iron loading conditions. When I went to my Dr. to ask for a iron panel, he told me that I could not have a problem with iron because my hemoglobin was always normal. Well, according to Marie Warder's blog hemoglobin always is normal. I was about to accept his verdict when I went back to read her and astoundingly saw that statement about hemoglobin. I was anemic in my teens and 20s, I now suspect it was iron loading anemia. My ferritin was 66 when I tested it in December, but I gather it is the transferrin that gets screwed up in MS. So I'm going to take my genetic test back to the Dr. and request a full iron panel.
I have started to put together the reason why I have gotten so dramatically worse since menopause. It has been incredibly devastating, but I have been perimenopausal for about 10 years or more. But since the cessation of bleeding, I am so bad I have been considering doing myself in... it is so hard to live with the symptoms, spasticity, Periodic Limb Movement Disorder, purple feet, no circulation, thyroid problems, joint pain that is unreal, heat intolerance... my educated guess is that MS is actually just a form, perhaps more mild, of hemochromatosis, but the accumulation eventually results in organ damage, pituitary poisoning etc.
I recently had a most enlightening experience. When I had to give blood for the ferritin test, even that removal gave me five days of relief. The Periodic Limb Movement Disorder disappeared for five days, Mike ordination was astoundingly better, pain relief was incredible. I am primary progressive MS, you simply do not get improvement! What I need to do is phlebotomy, this is so clear to me now. My problem is probably that nobody will want to do it, that nobody will want to authorize it. Having MS, I am not allowed to give blood at the donor clinic. When I questioned them, they said they were not worried that MS could be transmitted through the blood, they were worried about the health of the donor. And of course many people with MS are so debilitated this is likely logical.
I live just outside of Victoria on Vancouver Island. Does anybody know of an open-minded hematologist in this area? I am not asking for some sort of bizarre surgery, I am simply asking to do some phlebotomy to see how much relief and improvement I can experience from it. I have been reading some of the hemochromatosis blogs out there and they are all describing some of my symptoms... I think I probably inherited this gene from my mother who had diabetes when nobody had diabetes and to was depressed her whole life. Her depression did not respond to any of the antidepressants and she committed suicide at the age of 58... she had many many more health problems that were unexplained, including one bout where she started to sweat out all of her body fluids and ended up in the hospital near-death for about three weeks. When the sweating finally ameliorated, she was left with a bizarre range of allergies... she was a large woman for most her life, but died very thin. My father was Irish, so maybe I inherited the gene from him, he died of a heart attack at age 70, after suffering very high blood pressure for many years... who knows I just have one copy of this genetic mutation.
Does anybody know, please please please, of a good hematologist or internist in the Victoria area that might listen to my request for phlebotomy??? I am in such shoulder pain I can hardly bear it.
Back to top
hatter uk
Joined: 26 Mar 2009
Posts: 44
Location: dublin
Posted: Mon Jan 25, 2010 12:53 am Post subject:
--------------------------------------------------------------------------------
Hi Merlyn,
First of all,i would like to say sorry to hear of all the troubles that you have been through.I only hope that there is light at the end of the tunnel.
Well, no good news from me! When I went to the specialist today he fobbed me off. It was obvious my doctor has spoken to him prior, and the referral letter was awful. It said "This women insists she has iron overload and has been researching on the internet". He said that C282Y heterozygotes don't overload iron, and 62% saturation was a non-issue, same as ferritin at 175.
I'm really done with the medical profession. He said that me feeling 100% better after the phlebotomy must have been a coincidence, and phlebs don't affect your heart so all the jumping around my heart is doing must be a separate issue. Unbelievable!
So I'm on my own. At least I'm full of energy now and running on all pistons, with no thanks to the medical progession I might add.
I can get another Phleb by donating in April, so hope things stay good until them.
He did book me in for a 24 hr heart monitor thingy I'll have to wear at home. I hope it ends up being done just before menstruation coz that's when it starts really jumping around.
My sister has been onto the blood service concerning her not being able to give blood because of the MS, when her ferritin is over the recommended range. They have referred her to another hemochromatosis doctor at the local hospital, so another lead we will follow through on.
People should be able to have blood taken, full stop, whether the blood bank needs it or not, if their ferritin is over 50.
I'm really done with the medical profession. He said that me feeling 100% better after the phlebotomy must have been a coincidence, and phlebs don't affect your heart so all the jumping around my heart is doing must be a separate issue. Unbelievable!
So I'm on my own. At least I'm full of energy now and running on all pistons, with no thanks to the medical progession I might add.
I can get another Phleb by donating in April, so hope things stay good until them.
He did book me in for a 24 hr heart monitor thingy I'll have to wear at home. I hope it ends up being done just before menstruation coz that's when it starts really jumping around.
My sister has been onto the blood service concerning her not being able to give blood because of the MS, when her ferritin is over the recommended range. They have referred her to another hemochromatosis doctor at the local hospital, so another lead we will follow through on.
People should be able to have blood taken, full stop, whether the blood bank needs it or not, if their ferritin is over 50.