Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Bethr » Thu Feb 04, 2010 1:46 pm

Hi Merlyn, interestingly sulphur is contradicted in Porphyria. Maybe it's worth getting tested for porphrins in your system. I've just taken that test and I'm awaiting results in about two weeks. Porphrins are what makes me overload iron with just the one HH gene. It's a nasty cycle. The more iron I overloaded the worse the neurological porphyria symptoms. Add to that the usual effects of iron overload (fatigue etc) and you get "MS".

Dietary Notes regarding Sulphur / Sulfur


Sulfas, sulphites and sulphurs are contraindicated for porphyria patients.
One does need to look at food labeling to know what are sulphur based products.

If you want to avoid sulfur-based preservatives, these are the names to watch for:


Sulfur Dioxide
Sodium Sulfite
Sodium Bisulfite
Sodium Metabisulfite
Potassium Bisulfite
Potassium Metabisulfite


Many commonly used products at home contained some of the above ingredients.
Many of these products are medicinals.
Sulfur is used to treat many kinds of skin disorders and is contained in cream, lotion, ointment, and bar soaps. It is also found in numerous ointments.

Normally healthy persons, though not all, are able to process sulfur, but when sulfur is used to create sulfites, many people experience adverse reactions. Almost all known porphyria patients will have some reaction. And it has been authenicated by the FDA that several deaths have been the result of reactions to sulfites.

Such sulfite reactions can range from behavorial reactions to breathing difficuties, rash, hives, and insomnia. Most porphyria patients are more sensitive than others to chemicals and are very sensitive to the sulfur-based preservatives.
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Postby shye » Thu Feb 04, 2010 4:05 pm

Barbara-
fascinating reading! What I kept wondering, why attach them to feet, instead of somewhere else? i would think maybe the buttocks (more fat and blood)?
Please keep us posted as to whether this really helps you--and for how many days, etc.
Thanks
Last edited by shye on Thu Feb 04, 2010 4:37 pm, edited 1 time in total.
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Postby Bethr » Thu Feb 04, 2010 4:17 pm

OMG!!!! It's just clicked. I had a very active night last night, awake for 3 hours in the middle of the night and also slept a bit yesterday afternoon. I checked the microwave snack i had yesterday. It was a simple looking dish, potato, peas and corn in gravy. i just checked the label on the one I still had in the freezer, flavour enhancer 160d - caramel, sounded harmless. I just looked it up and it's Sulphite Ammonia. That brought me immediately back to my sons problems when he started school. I had noticed when he was young he was very hyperactive, and that when he ate some foods he got twitchy and you just couldn't stop him, he'd wind up at the end of the day like a spring coil and I always likened him to a dying fly spinning on the windowsill, and then crashing out to sleep suddenly, he had a strange gait, was unco-ordinated and rather unusual behavior at times. We had a difficult time with him. When he started school it got worse, and I tried to find out which foods were affecting him.

The school pressured me to put him on Ritalin etc etc, and I held out, I knew it was the food that was affecting him. He went on a total elimination diet. Went back to absolute basics and slowly introduced back things one at a time, noting the affect of each additive, colouring, preservative or type of food. So I'm pretty expert at the food additive regime. He was in trouble for a few years, and then a few years later he was growing much bigger it kind of went away. He started not to react much and we gave up on the special diet. He started to get straight A's at school in year 7 and has been really good. He always had a small rash on his face (chin area) when he had been reacting to foods.

It was hard times for him and us as a family.

My daughter doesn't seem to react to anything. It will be interesting to see the genetics of it all.

Is porphyria really such a "rare genetic disease", that the doctors claim?
I come from common Glasgow stock with a bit of Irish mixed in.
Imagine if all those kids on ritalin could be treated in a different way.

I was hyperactive as a child too, but didn't have his troubles. Lot's of energy wasn't a bad thing, and the foods we ate in the 60's were simple and home made.

This is "food" for thought!
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leeches

Postby jak7ham9 » Fri Feb 05, 2010 7:38 am

Hi I Put them on my feet and ankles because they werre cold and purple and I read that leeches perferred less oxygen rich blood. The are awesome on spider veins(varicose vein) they made them totally disappear. No lazors or anything. I used 18 it probably was too much for first time who knows. I feel great today my feet are actually warm weird but great lets see what happens I will track. The blood all over the place was pretty gross and my feet were worthless with black scabbies but peachy today. Mopping up the dried up blood eewwww yuck.
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Postby shye » Fri Feb 05, 2010 8:24 am

hahahahahaha Barbara-
fantastic -- leeches to cure varicose veins! --so much easier than stripping the veins, laser operations etc.

keep us posted-this is amazing stuff :lol:
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Postby Bethr » Fri Feb 05, 2010 9:56 am

Excellent Barbara, you are real trooper :lol:

Feeling better makes it all worthwhile. Good on you.
I wonder if you can buy leaches in New Zealand?
I'd give it a go. More pets to add to the chooks, horse, cat, and fish.........
But cheaper to feed!
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Postby ForeverSpring » Fri Feb 05, 2010 10:43 am

Good news about the quick healing of scabs and the disappearance of your spider veins!!

Thank you for sharing your experiences! :)

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Last edited by ForeverSpring on Sat Feb 06, 2010 7:55 am, edited 1 time in total.
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Postby ForeverSpring » Fri Feb 05, 2010 11:17 am

For those who definitely have iron overload, I have another question (or two).

When I was at the clinic earlier this week, a nurse applied a finger-pulse oximeter to my finger and the blood oxygen saturation rate was only 92%, which is a little low. This rate has been fairly consistent over the past 7 or 8 years, so it appears to be chronic. It feels harder to breathe at some times more than others. (I have never smoked.)

Does anyone else here have both iron overload and low blood oxygen saturation? Have you noted whether or not your phlebotomy affects the oxygen saturation rate -- either for better or for worse?

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Postby Bethr » Fri Feb 05, 2010 11:38 am

I get this sometimes, not a lot. You need to stop and get a couple of good breaths to recover. I do a lot of cross country walking, lots of hill work (well I did but it's been a erratic over the last two years). I definitely notice it. I've never had a test though.
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Postby katie45 » Fri Feb 05, 2010 12:36 pm

wow..this is great. Where do I get leeches in vancouver? May have to start farming them! Cure MS etc. for everyone!
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Postby Merlyn » Fri Feb 05, 2010 12:44 pm

http://edinburghnews.scotsman.com/features/The-iron-overload-behind-dads.6046632.jp

It's thought the condition could be behind many Scots' heart, liver and diabetes problems – some believe it's also linked to multiple sclerosis and dementia – yet few will ever have been tested for it.


I had a crisis of confidence last night. I thought maybe I had gotten totally crazy, because of the overwhelming desire to have found an answer to being trapped in this body... and I thought, good grief my iron tests were so normal, I cannot possibly have a problem with iron overload, I was making it up... I went to see my doctor yesterday, and he basically said that my iron metabolism is abnormally normal!

And really for me, nothing is out of reference range... but then I started to read again this morning,


http://www.consumerhealth.org/articles/ ... 0303140150


A study in the New England Journal of Medicine (Oct. 1988) by Dr. Richard Stevens showed that as iron saturation levels increase, cancer rates go up. Until that time a 65% saturation level was considered to be safe, but this study showed that at a 37% saturation level, the cancer rate started to skyrocket, and doctors began to question the levels they had previously considered safe. In January 1994, in the International Journal of Cancer, Dr. Stevens reported that cancer rates were increasing at levels of only 31%.


My saturation level is 44%, normal is 30%... at 45% they say you probably have genetic hemochromatosis... also on the Scottish hemochromatosis website, they reiterated that ferritin levels can be normal, that what they are concerned about is the saturation levels... so thank God I read more this morning, because I just started to doubt my sanity... telling the world to do phlebotomies for multiple sclerosis seems like a bit of a stretch, but it is exactly what is needed if iron overloading is the problem... which it is!

I am just waiting for the hospital to phone me back, I don't like the time of 1 PM in the afternoon for my phlebotomy! The Dr. has agreed to try one, which will happen next week... he looks like he is doing this under duress LOL, to appease me, his crazy client. We will see who is crazy...
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Postby Merlyn » Fri Feb 05, 2010 1:19 pm

http://www.healthcentral.com/multiple-s ... 53/leeches

Finally, not many of you have spent post-New Year’s Eve pondering the saliva of leeches, but now here’s your chance.



Hirudine is a clot or thrombin inhibitor that comes from the spit of same worms. In 2008, when Dr. Mary Han of Stanford injected it into mice with experimental autoimmune encephalomyelitis, a paralytic disease similar to MS, improvement in the animals’ motor weakness was noted.



Proteomics, a new age genome based analysis of proteins, has helped to identify proteins involved in many diseases including cancer and MS. This helped Dr. Han to determine that MS patients with MRI visualized chronic active plaques in the brain (i.e. those hotly inflamed and often related to ongoing signs and symptoms) were the plaques that showed several proteins involved in coagulation (clotting). What a fascinating new area of MS research and quite a different pathway of disease pathogenesis than that usually pursued in attempts to decipher the mystery of MS!



It remains to be seen whether plaque type determination and clot busters from leech saliva will substantially help MS patients, but proteomics based biomarker research would appear to represent an exciting new arena with many implications for the MS community.
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Postby ForeverSpring » Fri Feb 05, 2010 1:48 pm

Hi, Merlyn!

It is good to hear that your doctor has agreed to at least one trial phlebotomy. How is he planning to evaluate the results?

I well understand the conflicting emotions you are going through. I have so many times almost convinced myself that I really do not have something going on, that I must be imagining it! Then test results, or a medical article, or some other reality brings the truth more firmly home. Reference ranges are only averages; they are not the ideal goals.

That Consumer Health article is excellent! Some of my family members have been asking questions, and this article is well suited to inform them of what they need to know about iron overload. Thanks for posting it! Did you give it to your doctor to read? The author’s comments about cancer and safe levels are particularly interesting. I think that I will print it out and give it to the doctor who ordered my lab tests!

Let us know how the phlebotomy goes. I hope that he will be agreeable to following it with a few more and keeping careful watch on the effects. If not, you can always order some leeches! :)

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Postby Merlyn » Fri Feb 05, 2010 5:44 pm

I told my Dr. that I just wanted to try it is a what if? I am not sure why he agreed actually, but for the simple fact that I said there is nothing else for me to try and I was afraid I was going to be as badly off as my friend with a baclofen pump in her spine. Maybe he's doing it for my mental state rather than anything physical. I don't think he intends to monitor anything after the phlebotomy, I am not sure at this point that he will authorize a second one... phlebotomies done in the hospital are very costly I understand, like 400 bucks each... so for what if? I think they are not crazy about running up the necessary medical costs.

Which of course brings up the whole issue of self treatment and the risks associated with that... I don't think I will find a Dr. that will keep authorizing phlebotomies and keep measuring iron levels/ferritin etc. after all, it is at this point theoretical that I have iron overload (and like Candida, how many are going to buy into it anyway?)... the only thing for sure is I have MS, which means probable iron overload... if disability correlates with the amount of iron in the brain, then I have been shoveling in there. But we are in the realm of "newness" in that the focus on iron as a problem in MS, let alone being causative, is measured in wee. I have made some very questionable assertions... it makes so much sense to me that we load iron because we have genetic mutations for hemochromatosis... and they certainly have many studies out there testing people with MS for these genetic mutations... they must have suspected that abnormal iron metabolism in MS was somehow related to hemochromatosis... but I haven't seen any studies that really hone in on it... and then with Zamboni's findings, it all seems too weird to me, that much iron... as far as that Consumer Health article goes, there are cutting-edge doctors and there are the ones that I have seen generally... it takes them forever to recognize the implications of new findings etc., and they do not change their views especially if the laboratories don't change their reference ranges, and many of them are very slow to ever change their spread. I ran into this for thyroid, the reference ranges were total idiocy, and report after report would come out saying that the reference ranges were too broad especially for TSH... I don't think they have changed yet... and then they keep lowering the reference range for T3, until it is so absurd that the patient still gets caught if the Dr. treats by laboratory results and not how the patient feels...

maybe you have the more progressive Dr., but I'm pretty sure mine would dismiss that article as nonstandard and therefore not valid.
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Postby ForeverSpring » Fri Feb 05, 2010 7:07 pm

I was not thinking about the expense of a hospital procedure, which would make him understandably reluctant. :( It's a shame that it cannot be done at his office place. Then he could monitor your hematocrit and/or hemoglobin, and, if it does not crash after 4-6 phlebotomy treatments, it would essentially confirm your iron overload.

Eventually, your test results will fall out of reference range in the right places, but it must be very frustrating to have to wait for that to happen while your condition deteriorates.

I hope that you will find a way to resolve this situation.

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