Phlebotomy anyone?

Merlyn · Post by **Merlyn** » Fri Feb 12, 2010 12:52 pm

I have a Tuesday phone consult with my naturopathic physician in Seattle. She is an amazing woman, and I just want to educate her on these findings because I am sure she is in contact with other doctors and she knows me very well and knows that I am not given to hyperbole or making claims about my condition being helped by anything other than thyroid... I want her to tell other people/doctors about this breakthrough.

Bethr · Post by **Bethr** » Fri Feb 12, 2010 12:54 pm

Fantastic Merlyn!
Interesting to read about the thyroid. I haven't been tested for this, so that should be a goal for me. I'd really like to know what sent my heart all a flutter and so sore muscle wise, like it had been doing a big workout, trembling and jumping about. This is all new to me, I'm not sure if it is my heart even as I've never experienced anything like this before.
My theory is that the blood take drew the iron out of organs and into my system again, affecting other organs. This antagonised Porphyrins and set off the spasticity, another thing I had never experienced before.

When I look at my Nana, I'm still fixated on the hereditary aspects of this. My Nana had neurological problems too that they never had a diagnosis for, and thyroid problems too. She ended up quite insane and unmanageable, she'd run off into the night and ended up being locked in, as no normal rest home would take her (back in the 70's-80's).
She slept a lot and lived to an old age in a semi vegetative state.
She had a great tan!

Keep us updated Merlyn, I'm so pleased for you...........

Merlyn · Post by **Merlyn** » Fri Feb 12, 2010 1:00 pm

ForeverSpring-here's hoping that getting rid of excess iron will prevent you from descending into my nightmare. If I understand the ravages of heavy metal toxicity, you will be spared. Heavy metals destroy health and a myriad of ways. Any heavy metal will alter the T cells, turn on the autoimmunity factor... I believe that is why LDN works on so many conditions, simply because of the T cell factor... I was on the histamine board from day one with Goodshape, and I am very proud of the fact that we started the whole LDN cascade... well there was one woman originally from the Prokarin board that went to see Dr. Bihari, and she started the LDN bandwagon... I first took LDN back in the year 2002, but I seem to have some form of paradoxical reaction to it also, in that it wipes out my CD8's and increases the CD4's so that I end up having some form of attack... and I don't have attacks because I am Primary Progressive. But twice I have tried LDN, tested for T cells and found them going the wrong direction. Why? No idea... I am so glad it works for so many, but I do have questions about iron accumulation. I would want to get rid of the heavy metal that causes the T-cell dysfunction rather than just rely on LDN.

Bethr · Post by **Bethr** » Fri Feb 12, 2010 1:04 pm

I just had a thought on my Thyroid. About 20 yrs ago, I had a swelling in my neck, quick small and very painful. I went to the doctor and was rushed off to the hospital and put on antibiotics. Apparently it was a thyroglossal cyst, and I was born with it.

It went away after the antibiotics and never appeared again, I'd kind of forgotten about it. They did say at the time that 90% of people with one, need it surgically removed which is quite a major operation (touch wood!!). But never had anything happen again. Wonder if that has any bearing on the Thyroid and how it is working.

shye · Post by **shye** » Fri Feb 12, 2010 3:56 pm

Wow Merlyn, wht a read! Am so glad you are getting somewhere good, and admire greatly your persistence...

got my fasting iron done today--results by tues I think--don't expect any real problems, (I pretty much fall into anemia of chronic illness on old test, but that was not done fasting as it shoud be)--but in light of all this, definitely a step to take--am on EDTA chelation finally, will affect iron only slightly--will start IP6 this weekend, if can find it--otherwise, will order it--on grounds should keep iron VERY low no matter what.
I am coming to conclusion iron, high or even at mid range, is a problem. And I do eat meat once a day (time to reconsider that again).

Cece · Post by **Cece** » Fri Feb 12, 2010 4:06 pm

shye wrote:Cece-
are you in the States? Are there restrictions when you donate blood? that is, do they list the reasons they will not accept blood?
Thanks

I'm in the states. I read through the restrictions and it looks like I qualify (aka m.s. does not exclude me.) If I'm wrong I'll find out Monday!

Cece · Post by **Cece** » Fri Feb 12, 2010 4:19 pm

Merlyn wrote:]make sure you test for free T3, free T4, TSH, thyroid antibodies... the number of people with MS that have Hashimoto's is truly startling. Listen to your gut, if you are afraid of the phlebotomy right now due to fatigue, and if you can access the blood draws, please do some preliminary testing for thyroid and iron!

This is kind of you, thank you. I had my blood tested two weeks ago in fact! Iron is in low-normal range, TSH was good. I don't think I was checked for free T3, T4 or thyroid antibodies. I will double check the report and google this some. I will also probably learn just by doing the blood donation...if it wipes me out, I won't be back.

I have very low disability...my neurologist has called my m.s. benign, although with the fatigue and other issues it does not feel benign...and I also have my three children (2, 4, & 7) so fatigue is a constant.

Merlyn, your story is inspiring, I hope your improvements stick around and that you're right, that phlebotomy could be a permanent strategy for you. The things we learn on the internet!!!

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 11:44 am

Cece-do you have the results of a proper iron panel? By low to normal iron, do you mean ferritin? This is not a good indication of iron metabolism, because ferritin can be very normal with very high transferrin saturation... and my TSH was always normal, if you consider 3.45 normal... in Australia they have found that "normal people" that are healthy, had a TSH of 1-1.5... that is the healthiest, and many doctors are recommending treatment for subclinical hypothyroidism at anything over 3.0... but when I was properly tested, I came in at 2.3 on the free T-3... reference range 2.8-5.0

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 11:58 am

The longer I am on here and reading about CCSV I, the more perplexed I get. There is no excuse in this entire world to not be testing for iron metabolism before going through these surgeries! I do not get it! I think they have things totally backward, that all of these twisted veins are a result of skewered iron metabolism, undoubtedly related to hemochromatosis... good grief, I can't quite get my head around this, why they are not doing a simple blood test before proceeding with unproven surgeries. I'm sorry, but more and more I feel like this whole thing is simply bizarre. All of these world experts, people with all of these qualifications after their names, and they can't see that doing a simple iron panel might shed some light on why iron gets into the brains of people with MS... not to mention Parkinson's and Alzheimer's! I am totally flummoxed, and I don't know why more people with MS are not demanding an iron panel. If I am depositing iron into my brain, the first thing I want to do is to establish a baseline on my iron status! It is so simple! What the hell are these doctors up to! Is it all about money yet again? CCSVI looks a hell of lot more lucrative than doing a simple iron panel and trying to establish where the iron metabolism problem is. I am beginning to think people are totally gullible. Why not ask your Dr. to run a blood test to determine if you are showing an abnormality in iron metabolism that might be causing you to iron overload in the wrong places like the brain! And read up on hemochromatosis, and understand that twisted veins and iron deposits in the legs or the brain is a result to use iron properly or to get rid of it. You know something, I think we are being played for fools once again, that the average person could not possibly figure out how to deal with too much iron. Marie Warder was probably right, that doctors don't have a clue about hemochromatosis and you cannot seem to educate them about it anyway. Please please please people get a proper iron panel and take it from there.

ErikaSlovakia · Post by **ErikaSlovakia** » Sat Feb 13, 2010 12:05 pm

Hi Merlyn,
I think many patients including me know that even if we have iron deposits in brain our iron levels in blood are OK.
My were OK before and are OK after.
Of course, some of us still might have hemochromatosis.
Erika

Bethr · Post by **Bethr** » Sat Feb 13, 2010 12:10 pm

Imagine Merlyn, if iron was linked to most diseases (which from what I'm reading it seems to be), what an upset that would cause. I read a medical article concerning the theory that iron is causing a hell of a lot of problems. This was discussed when the hemochromatosis gene was found. The United Nations criteria recommended hemochromatosis should be screened on the entire population, but it was argued against as not cost efficient. Their concern was that the medical profession couldn't cope if everyone wanted their iron levels dropped. What about the poor pharma industry, where would you find jobs for all the people when the drugs sales failed and people were generally more well?

It's quite sickening really.

How are you feeling today?

Cece · Post by **Cece** » Sat Feb 13, 2010 12:11 pm

I think Dr. Haake at Buffalo is focusing on the iron side of the equation, this is what his research was in the last several years (particularly with I believe the 7 Tesla showing up iron deposits that had previously been unknown), and I know that with the CCSVI diagnostics they're offering, they've included imaging for the amount of iron in your brain so I think they are following up on this.

I don't know if I'm right or not but the way I understand it is that if the blood brain barrier were intact and doing its job, the brain would not be getting loaded with iron. Now if hemochromatosis causes the body to load iron in the brain regardless, if even people with intact blood brain barriers would suffer from iron loading and people with CCSVI are just that much worse off, then this is huge.

Merlyn · Post by **Merlyn** » Sat Feb 13, 2010 12:23 pm

Just as an added observation, the fact that there is iron in the brains of people with Parkinson's, and usually Alzheimer's, really debunks the whole theory of CCSVI in my opinion anyway... if MS was the only disease where they were finding iron deposits, I would be more inclined to think that there was a structural congenital problem, but consider this... I am at the more extreme level of disability, and am on my second day of less spasticity (slept great last night!), my hands are working better, and because I have a live-in caregiver that works with me consistently, she also can verify independently to my Dr. that the reduction in spasticity makes her job easier. Actually, I have decided to use this argument with my Dr. for more phlebotomies... I will just say I don't understand why the spasticity decreases remarkably, but I will take it because I cannot tolerate any of the antispasmodic drugs and this will keep me out of nursing home with a baclofen pump in my spine! I don't want to try to convince him I have an iron problem... I will still ask for a referral to a hematologist, but more for monitoring... we will see, I have an appointment on the 23rd with him again. I keep thinking that if one phlebotomy has had this positive effect, what will 10 more do?

ForeverSpring · Post by **ForeverSpring** » Sat Feb 13, 2010 12:25 pm

This is my third day out post-phlebotomy. I decided to trudge through the snow to the post office and back, about 2 miles. I felt so tired and achy afterwards, especially in the upper arm muscles (odd

), that I lay down for an hour to rest. That was a little too much too soon, I reckon.

In my reading here and there, the consensus among many HH patients and specialists is that we should keep our ferritin levels well below my doctor’s goal of 50ng/mL. I see what my next challenge will be.

ForeverSpring

Bethr · Post by **Bethr** » Sat Feb 13, 2010 12:26 pm

I reckon it's huge. From my family's perspective it is. My sister and I can change our environmental influences and more than likely stay well. My brother seems to have been hit in the liver. He was an IV drug user 20-30 years ago, clean for decades, but they put all his symptoms down to Hep.c., never looking to see if he had the hemochromatosis gene, and now probably Porphyria as well, poor guy, his liver is copping it from all sides. Maybe he will improve now, he's had a hell of a life with this, sleep and pain are his main companions.

This is huge, and not just for MS sufferers.