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» LymeNet Flash » Questions and Discussion » Medical Questions » hemochromatosis + phlebotomy ????s

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Author Topic: hemochromatosis + phlebotomy ????s
trueblue
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Hi

For those of you that have this, has phlebotomy helped? I mean, I know it will lower levels.

I am wondering if you felt better.

(I think I might feel better if I was less rusty.)


Also, I imagaine no one will take my triple tainted blood for free. Is it incredibly expensive? Seems it shouldn't be but I bet it is and uncovered, right?


thanks for any info
(I did do some searches before posting but was curious about these things.)

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Truthfinder
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True, I don't have this disorder but I know someone who does. Having blood drawn periodically has made a huge difference for him. He was quite ill before they figured out what was wrong, and was diagnosed incorrectly with several other disorders first..... (sound familiar?)

I don't know about the insurance or cost aspects, but I think phlebotomy is THE accepted treatment protocol for this disorder so, hopefully, insurance will cover it.

Tracy

[ 15. May 2007, 08:04 AM: Message edited by: Truthfinder ]

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Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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Cobweb
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If I had the faintest idea what you were talking about I would offer some words of widsom or at least my opinion-however-I have not even had my first cup of coffee for the day and I haven't a clue.

If you would be so kind-would you explain what hemochromatosis and phlebotomy mean?
I know I could research and figure it out for myself but I'm taking flagyl.

Carol

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Penn92
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I know that getting blood taken every six weeks has greatly helped a friend who has hemochromatosis. I don't know what else he does to control the condition, but he is a healthy, active person.

--------------------
Getting older is when we would rather not have a good time
than have to get over it. - Oscar Wilde

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hurtingramma
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My brother has been getting "bled" for years. He used to go to a local doc, now he goes right to the Red Cross and has it drawn, and they then throw it away. Don't know if he has to pay.

The ironic part is that his wife is a phlebotomist!

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trueblue
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Thank you...
Tracy, Carol (pssst... high iron in ones blood and blood drawing), Cave, Penn and Gramma!


Thank you very much for responding, Tracy. And yep phlebotomy is the treatment for it. I'm glad it has nelped the person you know.

Carol ~ see definition above (sorry about the Flagyl. ew.) Apparently, drinking coffee or tea with meals blocks iron absorbtion. I just read that yesterday. Too bad I don't do coffee.

Ms Cave,
I really don't care for the blewy name. [Razz]
But thank you, anyway, and don't you think there are some bad guys around Valhalla that might need a transfusion of nice O neg blood, complete with Bb, Babs, HepC, EBV, CoxsackievirusA (and numerous things unconfirmed)?

Thank you, Penn, good to hear and it doesn't matter if the person is, essentially, well otherwise. I'm waiting to have my levels checked again but they tend towards high and apparently this can and will destroy organs.

Gramma, I did have to laugh that his wife is a phlebotomist. Pffft...
Have you been tested as well? Apparently, this is genetic, although doesn't have to always be. For me, I've suspected is for 20+ years and am still not positive. I cannot take Iron or Vitamin C and neither can my sister.

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just don
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The only suggestion I have,,,as poor as it is,,,IS to find a vampire to 'date'. You will BOTH be happy as clams!!

Fresh out of a supply of those,never ever met one(that I knew of),,,unless you count lawyers!!

Hope you get BETTER responses than this one!!!I was goin to say something, I pass,,,being --just don--

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just don

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trueblue
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Ha... Don... great minds... I thought about the vampire angle, as well. [Smile]

I see no ads in the phone book. [lol]

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Cobweb
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HOUSE- did you watch it tonight?????? Kid almost died before they diagnosed Hemochramatosis.

How did you get diagnosed?

Carol

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Carol in PA
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quote:
Originally posted by Cobweb:
HOUSE- did you watch it tonight??????
Kid almost died before they diagnosed Hemochromotosis.

Yes, I just watched that.
Did you notice that the boy had "lack of inhibition," and said whatever the heck came into his head.

A neuro Lyme symptom.


Heh, what do you want to bet that in a case like that, that borrelia could be behind all those symptoms.

Carol

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trueblue
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Yes, I did and it scared the crap out of me.

I haven't beeen diagnosed. My iron levels tend to run high and the doc has been suspicious for a while. It says suspected Hemochromatosis on my chart.


There's a lab slip in the mail to retake all the iron tests. As far as I can tell from looking around the internet the bloodtests would show something. They mentioned genetic testing as well.


It's a guess based on my most recent set of new onset symptoms (as are hormonal crap and sinuses and who knows what else, they want an MRI of my head). I can say with some certainty that this sucker is no sinus headache. Neither is it a migraine because I had one on top of it and it's, for sure, really different.


http://www.irondisorders.org/Disorders/Hemochromatosis.asp

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kidsatlast
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Hi,
I have hereditary hemochromatosis. I was diagnosed three years ago. In the first year of treatment I had 10 therapeutic phlebotomies which brought my ferritin down to almost zero.

Now I only seem to need to get a phlebotomy once or twice a year and this keeps my lab values where they should be.

Strangely, I don't feel any different since getting this treatment. I wonder if it affects men differently who have it.

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trueblue
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Thank you for your response, kidsatlast.

I hadn't heard from anyone that's actually been dignosed and phlebotmoized. I was hoping it made you feel different, darn, that would have been too easy, right?


I was thinking if you were having all this built up iron in your organs, joints, etc...
maybe it would feel better with less.
(I'm not sure they should let me do too much thinking. [Roll Eyes] )


Thanks again

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BryanRosner1
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I too am wondering if anyone with Lyme has had phlebotomies and actually felt BETTER. I'm considering as my ferritin is 350.
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terv
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Currently I am in maintenance mode for my iron levels - thankfully. I just had to have a pint taken out and I was wiped out for a week. I only weigh 110 lbs so that may contribute to that.

With a ferritin of 350 it may take a lot of phlebs to get your numbers normal. I was de-ironed by NIH and when I finally got my ferritin to 50 my TSAT% came into range.

People with your numbers have weekly or bi-weekly phlebs. It is rough because your body has to work to move the stored iron into your blood. Personally I cant imagine going through de-ironing with full blown lyme symptoms. I would think it would be exhausting. But if you have more weight on you than me it may not be bad.

However you really have no choice but to get those iron numbers in range. Take it slow. It may take a while but you will get there.

Not sure if it helps with lyme symptoms. High iron issues can cause some pretty bad issues.

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BryanRosner1
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terv, but my serum iron, and tsat, are very LOW.

So I'm not even sure I have high iron. I'm very confused.

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terv
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There is a website with lots of info about iron disorders

http://www.irondisorders.org/

Below are some files/links that may be of interest.

I suggest you go to

http://www.irondisorders.org/Websites/idi/files/Content/854256/HowdoIknow_Anemia__Converted_.pdf

I am not suggesting you are anemic but at the bottom is this chart that you can compare you numbers to. This might help you.

There is a disorder called anemia of chronic disease.

http://www.irondisorders.org/anemia-of-chronic-disease

http://www.irondisorders.org/Websites/idi/files/Content/854256/IOA%20ALL%202011.pdf


Is your hemoglobin low?

I hope you have a hematologist/oncologist helping you with this and not your lyme doctor.

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dal123
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Check MTHFR. I used to have high Ferritin and once I was treated with deplin -methylfolate 15 mg and daily methyl B12 injections no more Ferritin issues. Methylation problems contribute to high iron especially the A1298c mutation and is often mistaken for hemachromatosis but doctors usually won't treat with out a genetic positive test, you are better off treating for MTHFR.
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terv
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dal123,

That is really interesting.

When you started with the B12 did your ferritin levels naturally come down? Or did you have to do something to get the ferritin down?

Did it take a long time?

Really interesting that high ferritin with low TSAT could be due to MTHFR. Kind of cool.

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Tincup
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For what it is worth...

I had high iron. Did the blood draws and felt MUCH better. At the time I had realized for several years that any vitamins with iron made me feel awful. Didn't know why at the time.

When doing the blood draws I learned that the amount of blood they were taking was too much after the first couple of times.

I would be too weak to function at all. This would last about a week, at least.

So, I had about 1/4 to 1/3 of the typical amount drawn about once a month instead and found that much more acceptable. I didn't get that totally wiped out feeling any more.

I also use to get regular blood tests for Lyme, etc. (and they took quite a few tubes at the time). When I was feeling really crummy that always made me feel better.

This went on for years before I knew about the iron connection and I never knew why getting rid of blood made me feel better. Really puzzled me.

One theory of mine (now), besides the iron, is the Babesia was killing the red cells and therefore I couldn't get 02 and nutrients to my muscles, bones, organs, etc.

When the blood would be drawn what was left flowed better and I'd make new red cells that could properly transport 02, etc. throughout the body. That was until those red cells became damaged by the Babesia.

Haven't had a blood draw in a few years. Never did the tests (other than once every 6-9 months during regular other blood work), just went by how I felt.

The other thing that helped very much was heparin therapy. That is what I do these days. Here is more info on it.

https://sites.google.com/site/marylandlyme/tick-borne-diseases/babesia/heparin-therapy-babesia

Hope this info helps!

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lapis29
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quote:
Originally posted by Tincup:


One theory of mine (now), besides the iron, is the Babesia was killing the red cells and therefore I couldn't get 02 and nutrients to my muscles, bones, organs, etc.

When the blood would be drawn what was left flowed better and I'd make new red cells that could properly transport 02, etc. throughout the body. That was until those red cells became damaged by the Babesia.


Hope this info helps!

that is certainly a solid theory. Here is another possiblility. Seems lyme contains an iron and copper binding protein that screws up your iron and copper levels.

dont really understand it but I found this intersting.

-------------------------------------

A novel iron- and copper-binding protein in the Lyme disease spirochaete.

Wang P1, Lutton A, Olesik J, Vali H, Li X.

Abstract

Iron and copper are transition metals that can be toxic to cells due to their abilities to react with peroxide to generate hydroxyl radical. Ferritins and metallothioneins are known to sequester intracellular iron and copper respectively. The Lyme disease pathogen Borrelia burgdorferi does not require iron, but its genome encodes a ferritin-like Dps (DNA-binding protein from starved bacteria) molecule, which has been shown to be important for the spirochaete's persistence in the tick and subsequent transmission to a new host. Here, we show that the carboxyl-terminal cysteine-rich (CCR) domain of this protein functions as a copper-binding metallothionein.

This novel fusion between Dps and metallothionein is unique to and conserved in all Borrelia species. We term this molecule BicA for Borrelia iron- and copper-binding protein A. An isogenic mutant lacking BicA had significantly reduced levels of iron and copper and was more sensitive to iron and copper toxicity than its parental strain. Supplementation of the medium with iron or copper rendered the spirochaete more susceptible to peroxide killing. These data suggest that an important function of BicA is to detoxify excess iron and copper the spirochaete may encounter during its natural life cycle through a tick vector and a vertebrate host.
© 2012 Blackwell Publishing Ltd.

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Tincup
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Yes, very interesting lapis. Thanks for sharing it.

I checked out the full article (link below), and unfortunately, much of it is way above my training level.

From what I got, it doesn't seem to say if the copper/and iron directly affect the host or not in a positive or negative way. It does say...

"Although Bb does not have a CopA homologue, an efflux system homologous to Cus has been identified and shown to be not only important for spirochetal resistance to antibiotics but also required for infection in mice (Bunikis et al., 2008)."

It also appears that depending on the various strains the levels of copper and iron vary quite a bit, which I found interesting.

So, and I am making this part up for an example and I am way off on amounts, etc....

Let's say there is a teaspoon of copper and iron in each spirochete. This is needed during its life time to survive.

So are the spirochetes getting and using OUR copper and iron, or making their own? It appears, from what little I understand, that it can get minerals from a mouse's blood, so maybe ours too?

And/or, when they die is that teaspoon of iron and copper they've stored not being cleared by our system and building up?

Or is it being utilized by the new spirochetes as they mature?

I love it when I end up with more questions than I originally had. HA! Definitely food for thought!

It also states...

"However, the complete loss of the bmtA mutant in its ability to infect mice or colonize ticks (Ouyang et al., 2009) suggests that the metal requirement for Bb growth in vivo is far more stringent than the metal requirement for Bb growth in vitro."

Here is the full article in case someone wants to take a stab at it.

http://onlinelibrary.wiley.com/doi/10.1111/mmi.12068/full

Thanks again lapis for sharing that info.

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BryanRosner1
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Tincup, that is very interesting (your story). So you treated with blood letting even without testing your levels periodically to see where you are at? Did you ever get your serum iron, iron binding capacity, etc tested? For me, these are LOW, yet Ferritin is HIGH.
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Tincup
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Bryan,

I would get tested one or twice a year maybe, at most. I did not do monthly testing though or all of the typical testing. My "numbers" were off (quite a bit in some tests related to our conversation), and I am sorry, my records are stored in the attic and I can't remember numbers to tell you.

I do remember doc saying my numbers in some way were not typical for having the standard blood draws, and in others ways were- indicating this procedure might help, but we did it anyway. (I was quite ill at the time and didn't really care.)

We discussed the fact my blood was too "thick", if that helps.

Also I didn't have lots of $$ for lots of labs and my local lab was pretty sucky and miserable, so I didn't give them my hard earned $$. HA!

I went by how I felt because this was new to me and the doc both. I was the "experiment" basically and someone who spoke up and provided a lot of feed back, and we were basically testing the waters to see if it helped me. It did.

Doc then used it with many other patients with very good results.

I also didn't totally fit all of the requirements to have blood taken for a hemochromatosis patient (a RX)- some what I did, but not fully- so I couldn't get draws at hospital or local blood banks for that reason.

Poor doc. I basically said you take it or I'll do it myself.

Wish I had more hard core details for you. Sorry I don't.

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Tincup
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Bryan,

Just a thought... if it makes sense to do it, might want to try. And that comes from someone who is really skeptical about trying new things after being tormented by the IDSA idiots for so long.

And if you've lived through all the rest of this wicked stuff, and obviously you have, this procedure isn't going to hurt you and may just be really helpful.

I am big on science to back things up, but at some point I just have to say when it is something new that there isn't much on...

"If it feels good, do it."

Good luck!

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BryanRosner1
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Tincup, i totally agree with the "if it feels good do it." !!!

So how many phlebotomies did you do? How did you know when it was time to stop? How important was this treatment in your overall recovery?

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jory
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In 2015 NASA's ISS research group wrote an interesting blog post that discusses how astronauts manage their iron levels.

Choice nuggets:
"Iron stores increase in response to a decrease in red blood cell mass"

"One way to reduce the amount of iron in the body is to donate blood. In population studies, people who donated blood more often had a lower risk of cardiovascular disease than those who did not donate blood or donated it less often. This is just one example of the relationship between iron excess and disease."

Ironing Out Nutrition’s Bell-Shaped Curve
https://blogs.nasa.gov/ISS_Science_Blog/2015/02/24/ironing-out-nutritions-bell-shaped-curve/

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