Phlebotomy anyone?

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

Postby Merlyn » Mon Feb 01, 2010 12:31 pm

Hi Barbara! Spent time on Sunday reading about medicinal leeches... and trying to decide whether I could be brave enough to apply them... the only time I have ever had any experience with them was inadvertently when I went swimming in a river that was infested with them and my legs got covered with them. In order to get them off of me, we had to pour salt on them and then they died. I do remember that they did not "bite", I had no idea they were on me until I looked down and saw them. Mind you, I did not leave them on long enough to really let them dig in. They certainly have a very long history of use, I was surprised at how frequently they are still used and in how many countries. Doing this research kind of disturbed me because I kept coming across vampire websites that described how to extract blood for drinking and I just kind of wondered about the mentality of people who would even consider ingesting someone's blood considering all of transmittal diseases! But reading about the leeches was very interesting... but concerned about the possibility of bacteria/infection from them. But that doesn't seem to occur frequently... so if you are brave enough to do this please let us know the outcome and who knows? My Dr. has agreed to a couple trial phlebotomies so hope he does not renege on that promise. I am hoping to get the lab requisition from him on Thursday and either do it directly after my visit to him or the following day...

reading about leeches etc., I realized that of course phlebotomy is just another name for bloodletting and the history of bloodletting is ancient and still revered in some countries like Iran... used a lot in India etc., we are just applying ancient therapy to MS on the basis of iron overload.[/i]
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Postby Bethr » Mon Feb 01, 2010 1:10 pm

Will definitely keep in touch Merlyn. I have been fatigued and asleep and unable to work my business properly for so long, I have a lot of catching up to do now that I am feeling energetic.

I have put so much time into this research that I feel I need a break from it all. It's been quite overwhelming.
I'm off on holiday in a few weeks to the beach house and I'm really looking forward to it, and have the energy to get out there and do stuff with the kids.

Cheers...............
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Postby Merlyn » Mon Feb 01, 2010 4:29 pm

Have a good vacationr Bethr... you're amazing reaction to one phlebotomy gives me great hope. I read about a mechanical leech that was supposedly invented back in 1999, but I cannot find how to get a hold of one!
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Postby Merlyn » Mon Feb 01, 2010 4:33 pm

http://www.avoiceforms.com/ms-treatment/ccsvi/venous-blood-flow-and-iron-deposition-in-multiple-sclerosis

Although investigations into the role of iron in MS are still few, many high-resolution MR techniques have shown stored iron regions inside the brain and spinal cord.

If we look at experimental autoimmune encephalomyelitis (EAE), an animal model of MS, dietary modifications have revealed an incidence of EAE in 70% of mice with a normal iron level or iron overload, but 0% in iron-deficient mice. This is clear evidence that iron deficiency protects against the progress of MS in mice with induced EAE, with obvious clinical implications (Grant et al, 2003).

Authors have speculated that the failure of iron-deficient mice to develop EAE is impressive, but controversial as iron deficiency may lead to much more serious health hazards. However, they conclude that any of the pharmaceutical approaches to inhibiting EAE are less effective than iron deficiency.


Maybe some of us cannot handle much iron.. My caregiver with looking after an old man in Hong Kong who is 105... he is anemic which I find terribly interesting... in light of all that's come out with iron
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Postby ForeverSpring » Mon Feb 01, 2010 6:00 pm

This morning I phoned the clinic for an appointment, and they asked me if I could come in today! 8O (It must have been a slow day in there!) I talked with a physician about MS and iron deposits in the brain and then requested the tests for iron overload.

He wanted to have the blood drawn right on the spot! I told him that I had read that it should be done after a 12-hour fast, so he arranged it for tomorrow morning. He said that the results should be back within a week.

I did not expect to be able to do this so quickly, but I am glad. The sooner, the better!

If there is a problem with iron overload, I need to know.

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Postby Merlyn » Tue Feb 02, 2010 1:26 pm

http://www.americanhs.org/faq.htm

: What iron levels are considered "suspicious" for iron overload/hemochromatosis?

A: A percent of saturation of more than 40% and/or a serum ferritin of more than 150 are considered suspicious for iron overload/hemochromatosis. It is important to note that in some patients, the percent of saturation can be quite high while the ferritin rather low (this is often the case in children or young adults in their 20's) or conversely, with normal percent of saturation and a high serum ferritin. Genetic testing can, in most cases, confirm the diagnosis so that treatment can begin. Ask your doctor about liver function tests, if these are also elevated, that is another possible sign of HH.
Q: How is a diagnosis for iron overload/hemochromatosis confirmed?

A: Confirmation of a diagnosis is based on a combination of several factors; these will vary from doctor to doctor on which ones are used: a.) Elevation of iron tests such as transferrin saturation and serum ferritin b.) Elevation of liver enzymes (abnormal liver function tests) c.) Symptoms (diabetes/heart disease/arthritis/impotence/infertility/bronzed skin, liver disease) d.) Liver biopsy showing hepatic iron index (HII) and such liver diseases as cirrhosis/cancer e.) DNA genetic test (results are available between 1 to 14 days depending on the lab used) f.) CT/MRI/Ultrasound of the liver showing deposition of iron in the liver or hepatoma(s) (liver tumors). g.) Quantitative phlebotomy (a trial series of six weekly phelobotomies to confirm diagnosis; if the hematocrit remains 35% or greater immediately prior to each phlebotomy. Six weeks of weekly bloodletting is another way to confirm iron overload, hemochromatosis) h.) Alpha Fetoprotein bloodwork ruling out liver cancer due to HH. i.) EKG to rule out heart damage from HH. j.) Family history of iron overload, especially parents/siblings, who should also be screened with transferrin saturation and serum iron and genetic tests for comparison. If no family history of diagnosed hemochromatosis, check family medical history for symptoms of undiagnosed HH, such as heart disease, early heart attacks especially in men (in their 30's), liver cirrhosis/cancer, diabetes, arthritis, impotence, infertility, chronic fatigue syndrome, etc.


What I like about the above website is that they recommend a trial of six phlebotomies if by chance there is any question that one might be iron overloading... this to me is the most sensible approach, because reference ranges are always always determined by testing a bunch of really sick people. I have never seen a lab test that does not have such a broad range that undoubtedly a few people at the upper or lower ranges are going to be terribly ill... reference ranges treat everybody the same, which is absolutely nuts because certain people will not be able to function within those reference ranges. We are not all the same.

I am going to show this recommendation to my Dr., and press for six trial phlebotomies. I will show him my still existent tan and point out that there is a rather broad interpretation of what is a safe transferrin saturation level. Every website I have read says the cut off for transferrin should be 45%, never more, but my crazy laboratories reference range is up to 50... I have never seen a website say that 50 is safe! So what in the world are they doing saying the reference ranges up to 50???

One really does need such little iron to prevent anemia, and my guess is if you have had a high transferrin saturation rate, you have been storing iron in places other than the liver... so even if you have a couple of phlebotomies that reduce the ferritin level, you can start to pull the iron out of storage spots and you will not show anemia because the iron is being supplied from other organs to make hemoglobin... I am quite willing to be a guinea pig that does this if I can get my Dr. to cooperate...... I don't know that he will, but I do see him on Thursday. Turns out phlebotomy here has to be done in the hospital, so that has got to be an added expense, and I am not sure if my Dr. has limitations on ordering these types of things if there is no clear indication by the laboratories of iron overload.
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Postby ForeverSpring » Tue Feb 02, 2010 4:14 pm

Bingo!

My lab results are in already! 8O That doctor must have put a “RUSH” on the request! What a day this has been!

Upon reviewing my lab results, he suggested that the hemochromatosis gene test be done, also. I agreed. :) The results for that will take longer, I am sure.

The transferrin saturation rate is 60% (range 15-50%).
The iron is 187 (range 50-175).
This indicates iron overload, also called iron poisoning, which is a more apt term.

The ferritin is within range: 73 (range 26-388).
I have read that it is high with hemochromatosis?
I do have some Irish heritage.

Well . . . I am so thankful to know this. Now I need to sleep on it, and then do some more research for better understanding. Information on different websites does vary from one to another.

I have no idea whether or not phlebotomy can be done in the doctor’s office here. Incidentally, my hematocrit is 48, which gives me some room for phlebotomy, but six of them in six weeks? Who knows?

I recommend that everyone who has been diagnosed with MS should be tested for iron overload. It is indeed poisoning, and it is better if you know what is going on.

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Postby Bethr » Tue Feb 02, 2010 9:53 pm

Wow! Thank goodness you went and had the test done!

I had such an amazing change in energy levels, I hope you do too.
I felt 25 yrs old again :D My saturation was 62% in 2008 when I formed a lesion, (doctor ignored test results) and before I had the phlebotomy it had reduced to 51%, which is still above normal. I still felt awful, sleepy and heavily fatigued.

It's been so worth it, you should see my garden now!

I must admit, I am starting to go off to sleep in the afternoons again, 22 days since the phlebotomy. Just little sleeps, not heavy three hours jobs like prior to the phleb. I'll hold out getting the next phleb till I see the haematologist, just so he can monitor what happens, and what changes to have such a dramatic effect.

All the best ForeverSpring, we are definitely on to something here.

I hope more people try this. It was like magic for me, better than any pill.

Cheers...........
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Postby ErikaSlovakia » Tue Feb 02, 2010 10:28 pm

My ferritin is too high as well.

I called my doctor yesterday. I must wait for the rest of the results. She was also doing some hormons because of my thyroid.
I will know more later.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Bethr » Tue Feb 02, 2010 10:40 pm

There seems to be a theme through here somewhere. 8O

Iron overload can affect your thyroid (amongst other things).



Hemochromatosis and Hypothyroidism
Identifying and Treating This Iron Overload Condition
By Mary Shomon,
A little known condition that affects the blood is more common in people who are hypothyroid and those 40 to 60 years of age. Hemochromatosis -- also known as genetic iron poisoning or iron overload disease -- is an inherited disorder that results from excessive iron absorption from food. Hemochromatosis is the most common genetic disease in the US according to the Centers for Disease Control and Prevention (CDC). In addition to an estimated 37 million "silent carriers" of hereditary hemochromatosis, the U.S. has another 2 to 3 million Americans who are at high risk for having hereditary hemochromatosis
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Postby Algis » Tue Feb 02, 2010 10:47 pm

Cant we just draw half liter of blood and see by ourselves how we feel?
If it feel better; just check for how long; donate or even discard your blood...?
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Postby ErikaSlovakia » Tue Feb 02, 2010 10:59 pm

[quote="Bethr"]There seems to be a theme through here somewhere. 8O

Iron overload can affect your thyroid (amongst other things).

Thank you, yes I know, I read this thread every day. Even my crazy heart beating is maybe because of that. Sometimes I just sit, do nothing and my pulse goes crazy, my BP often as well.
I told my mother about it. She wants to go to check it as well.
She does not have MS, just because of me.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ErikaSlovakia » Tue Feb 02, 2010 11:05 pm

Algis wrote:Cant we just draw half liter of blood and see by ourselves how we feel?
If it feel better; just check for how long; donate or even discard your blood...?

Hi Algis!
:D Good idea! :D
As I have MS I can not donate, but we can meet and helpourselfs :D
I have an idea. It is enough to find Dracula - I am not sure all of you know about him.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Algis » Tue Feb 02, 2010 11:57 pm

No kidding Erika :D I'll ask a friend of mine who is a nurse. I don't have the "hand" to do it myself anymore.

Everybody donates blood without being strongly affected. If we cannot donate; just throw it away...

I'm too far from Transylvania or even from the Carpathes :D
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Postby shye » Wed Feb 03, 2010 12:31 am

But Algis, if MS is iron dysregualation, not just iron overload, could be you have too little; so I think it would be worth checking what your levels are first, then if too much, definitely donate.
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