This Is MS Multiple Sclerosis Community: Knowledge & Support

Re the Iron and the incline bed therapy.

Because you are no longer having reflux the iron due to the incline you shoud not have so much iron pooling in the brain. Reflux is caused by the stenosis(narrowing) in our veins. The incline of the bed lets the fluid move. It does not say it chelates iron from the brain but gets the refluxed blood moving out allowing the iron out.
I do use a lot of Cilantro in my juice. A large bunch per day with a cucumber and a bunch of celery. I know you need a lot and by juicing it I can get a lot in my system easier.

I phoned my mom and she doesn't know the drug my dad was on in the study. She said it was something she had been on to stop diarrhea. It was a small yellow pill and she has no documentation of the study.

Hi Behr -I too always feel better when I start bleeding. Interesting to hear this from someone else barbara

Hi Andrew,
while you were here, I was posting on the Inclined bed Thread, and will continue to do so.
And, no, no chance i will revert to flat bed again! This is too helpful.
I'm not bothered by getting all the distinctions made re: what is exactly helping what--will only worry if start regressing!

thanks Vohenecke for your reply--helpful.

Thank you Shye

Very helpful post with lots of details about where you are so that we can learn how things change in the future.

BTW, your improvements in your circulation are down to IBT


Heavy metals are affected by gravity when suspended in fluid. Improving the circulation means these metals will inevitably move back into the circulation.

This drainiage that everyone speaks of is impossibe BTW. We call it circulation because it is circular, so any movement down will cause a return flow!

For every action there must be an equal and opposing reaction.

_________________
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com

I'll keep you updated. I'm waiting for an appointment with the haemotologist.

Day 7 since 470ml phlebotomy.
Feeling wonderful, fluid joints, lots of energy. Not one sleeping episode in 7 days!!!! Sleeping right through the night, first time in a long time. Feeling frisky (wink wink). When my sister heard that, she said "You are back to normal aren't you"

My sister received her gene tests today and she has the hemochromatosis gene too, just one gene like me.

Next to be tested is my brother (serious liver damage since late 30's), he sleeps for 19 hours a day! The doctors blame it on his liver. If he had brain lesions like his female siblings I guess they'd say he had MS.

Funny thing that, females = MS, males = liver damage.
Can't wait to see if he has the H282Y gene too. He may get some relief also.

behr i am positive for the other hfe gene H63D. interesting these genes are more common in the genetic backgroup of europeans where ms is more prevelant

Exactly! People with two H282Y/H282Y or H282Y/H63D genes are being diagnosed much more easily now. They get their iron lowered under medical supervision by phlebotomy and many get their vitality back. The doctors seem to write off anyone with only one gene as "unlikely" to overload. My doctor (ex now ) did that. Point is, there are many more genes yet undiscovered, I think there are presently 38 others that create variables in iron metabolism. We only get tested for the two main ones. So if you only show up with one, say H282Y the other gene is still wild (?) and could be an influence.

The parameters for diagnosis with iron overloading are too high.
I started to get my brain symptoms of MS and Epilepsy with ferritin of just 175 (dx for overload usually >200 for menstruating women), tranferin saturation of 62% (Dx over >45%). I was still getting fatigue/sleeping/arthritis symptoms at ferritin of 135 and Tsat of 51%.

I must be a bit lower than that now, since the blood donation.

I'm not looking forward to going to the Haemotologist. I have to hope he has enough vision to connect the brain symptoms with the iron overload, and of course the miraculous cure I'm experiencing, long may it last!

100mls taken at blood tests gave me 4-5 days of energy & normality.
When it ended I slipped back into the sleeping/fatigue immediately.
470mls has given me 8 days of bliss so far.

It's kind of scarey that I may slip back into that abyss again shortly.
I can't give blood again till April.

why can't you give blood til April Bethr?

I can only donate every 81 days. Them's the rules at the blood bank.
Hopefully when I get to the Haematologist they'll arrange phlebotomy and quantative iron measurements. But I may not get an appointment for months.
Day 10 and still no fatigue or daytime sleeping.
Another thing I've noticed is I'm not reacting to heat so much.
I hid away on hot days and got especially fatigued, now I'm out there in the garden working.

I don't know if this is the right place to put this thought, but I was thinking about iron levels and various treatments for MS and I got to wondering -- so many of these heavy treatments like the ABCR's, chemo, etc., etc. cause anemia as a "side effect" -- wouldn't it be fascinating if the benefit from taking al those major meds was actually from the anemia?

People take those for MS ??

I know nothing of MS drugs, neither my sister or myself have taken anything for it. I don't use vitamins or anything either, never have.

I have so many suppositions about my past health history. I was anemic in my teens and 20s, but I do not have any health records from decades ago. I was diagnosed with primary progressive MS in 1992. I have been going steadily downhill since diagnoses, more and more foot drop over the years, used a walker, but the walker became too difficult when I could not really lift my feet, broke my leg in January 2004 because I was just dragging myself around. One of the mysteries of my life was infertility... I never did any tests for this, did not want children anyway. But it was highly unusual in my family. Was hypothyroid, but normal thyroid medication did not do me any good because I could not convert T4 thyroid hormone to T3 thyroid hormone. This is usually done in the liver, but my test showed I did not make the proper conversions. All my adrenals hormones were half of what they should be, especially DHEA. I am very hypoglycemic, again the liver I suppose. I now have high cholesterol even on the thyroid hormone. I also have three kidneys... I'm in what effect that has on iron excretion. I went for a blood test December, but I did not track things closely. I know I had about a five day grace period where I did not have so much spasticity, I mean a slight reduction, and a great boost in coordination... I am not walking so some things are hard to measure. But I do these standing exercises at the bathroom sink, and for five days I had a miraculous ability to get up without struggling. It is just occurred to me that maybe this was related to getting the blood for the ferritin test... I phoned an ND yesterday to ask whether they can authorize phlebotomies in Canada... the receptionist was very wary, said that is usually done in the hospital, and I am afraid that should I only have one genetic mutation... (still waiting for the god damn lab results), trying to get phlebotomy authorization is going to be really difficult. I do not have an established relationship with an ND here and I suspect I will be treated as a nutcase. I have maintained by relationship with an ND in Seattle, but I no longer travel because I have to use a ceiling lift etc. and traveling is impossible really. I am just about to phone the lab again, because I must have that test today. They promised yesterday to deliver it today, but I don't have it yet, very frustrating.

Just like me huh, relief from a blood test. Wow, this is quite amazing. I'm hanging out for your blood test results too.
I think we are really onto something. I'm thinking of contacting a professor at our medical university who specialises in hemochromatosis and giving him a run down on what's happened to me, and our family history, genes etc. He's head of department and has done quite a few published studies on hemochromatosis.
PS: I live in New Zealand.