Phlebotomy anyone?

Bethr · Post by **Bethr** » Tue Mar 16, 2010 1:40 pm

kc wrote:I don't get it, when I have blood taken (2 vials) I cannot drive home. The drs office is across the street from me! I feel terrible (prisoner in Azkaban) and it takes me a couple of days to get over it. If I am menstruating, I just refuse my blood test because I would not be able to get out of the office. (even in a wheelchair)

Interesting.,

kc

Many on here seem to be anemic. It takes about three hours for me to start feeling the energy flowing after a blood test. The last one was quite euphoric and lasted 3 days. About 4 vials, so 50mls or thereabouts (How big is a small vial, does anyone know). My last test was the best, I had it on day 7 of my cycle just as menstruation had finished. Double whammy maybe?

I still think there is an MS link to Porphyria. I've been reading all the porphyria forums lately, just to get a handle on it. If you have PCT, you come back to normal when you get phlebotomised, don't take any hormone treatments and give up alcohol. If you have the acute types, a lot of these types are anemic. Some (they are mainly women, funny that) have two types PCT and also an acute, which would confuse things. Quite a few who have been genetically tested and proven to be Porphs have many family members who have been diagnosed with MS.

Porphs react to many chemicals (nitrates/sulphites), balsam, hormones, iron, alcohol. Their neurological symptoms often follow their menstruation cycles as the hormones comes and go, with the luteal phase day 14-28 being the most difficult times. It certainly fits in with my profile to a T.

Dental anaesthetic injections seem to be a common trigger so I went back and checked and I had a big filling done 15 days before developing my brain lesion in 2008. It was my first filling since 1997, and my iron was at it's highest levels. I think my cup may have runneth over

I muddled on with the fatigue until December 2009 when I had a small filling done. I went downhill from there, and suffered my first spasticity fit in January after the first phleb, it's all documented here.

According to the Porph sites, it's the sulphites that they put in the drug probably as a preservative, not the drug itself. In the old days the anaesthetic drugs were more pure.

katie45 · Post by **katie45** » Tue Mar 16, 2010 2:01 pm

Bethr, Any health service (that I am aware of ) would need a drs. ok/order. When I called blood donation clinic, I said I was temporarily using w/c for hip prob. They instantly disqualified me for 2 months (till I was out of chair) so I shot myself in the foot..lol

Merlyn · Post by **Merlyn** » Tue Mar 16, 2010 3:09 pm

Katie45-I used this company, I think they have a branch in Vancouver. They'll $195 listed is in US dollars, and then they charge GST of all things...

http://www.hemochromatosisdna.com/index ... ken=__NONE__

it did take the full 14 days to get the results.

katie45 · Post by **katie45** » Tue Mar 16, 2010 3:20 pm

thank u M! I wonder if a person has porphyria would they carry the hh gene?I know I've read about it and I'm just being lazy.

Merlyn · Post by **Merlyn** » Tue Mar 16, 2010 3:44 pm

KC-you have any old blood tests that you could post? It seems like we either have hemochromatosis or we have anemia. I am not at all sure about anemias, except that some of them seem to be iron loading anemias, but I am not comfortable saying much about it, I think it would take a Dr./hematologist to treat it. Us people with hemochromatosis iron loading profiles are much easier to figure out and treat. But a full iron panel might be very revealing of your problems, they may not be the same as ours with hemochromatosis, but they might give you some insight into what to do.

Bethr · Post by **Bethr** » Tue Mar 16, 2010 3:53 pm

katie45 wrote:Bethr, Any health service (that I am aware of ) would need a drs. ok/order. When I called blood donation clinic, I said I was temporarily using w/c for hip prob. They instantly disqualified me for 2 months (till I was out of chair) so I shot myself in the foot..lol

Our Health and Disability Commission isn't a health service, it's a complaints service about health services. If you have to have someone in the family with HH before you can tested, that rules out finding any new HH genetics lines. That is criminal!

Bethr · Post by **Bethr** » Tue Mar 16, 2010 3:55 pm

katie45 wrote:thank u M! I wonder if a person has porphyria would they carry the hh gene?I know I've read about it and I'm just being lazy.

I think it's about 50% of people with Porphyria Cutanea Tarda (the more common porphyria) also have the C282Y gene. So yes, it's connected.

kc · Post by kc » Tue Mar 16, 2010 4:15 pm

Merlyn,

Recently I had my iron levels checked and they were within normal limits. Although I am pretty sure I am anemic. At least at some points during the month. I do not have the results here but will request them when I go in on April 7th.

kc

shye · Post by **shye** » Wed Mar 17, 2010 5:40 am

Merlyn

They have killed about four with these stents

As I've said before, you have some important information to share re:
hemachromatosis. But you destroy your crediblity with unfound statements like the above.
NO ONE HAS DIED FROM BEING STENTED.

LR1234 · Post by **LR1234** » Wed Mar 17, 2010 6:08 am

Hi Merlyn, I do also agree.
I think it would be wrong to assume everyone had haemochromatosis or anemia just as it is wrong to assume everyone has CCSVI.

I think everyone's MS has a different etiology (if that is the word!) and I think its the MS patient who has to figue out which one could be causative in their condition.

I understand your point that iron issues can cause issues with stenosis in the veins and for some maybe their CCSVI is due to this but there is also evidence to suggest that some people are born without jugular veins/with bones blocking the vein, and malfuctioning valves etc etc which cannot be related to iron overload.

I am going to get myself properly check out as you never know HH could be playing a role in my disease process (although i still suspect that mycoplasma infection which I can't rid myself of!!)

Merlyn · Post by **Merlyn** » Wed Mar 17, 2010 10:47 am

Shye-I don't think that's true:

http://www.medicalnewstoday.com/articles/180802.php

I think people are totally ignoring the risks of the surgery, the unknown long-term outcome of doing it-everybody seems to think this is some sort of proven cure and it is not. IT IS EXPERIMENTAL!! I understand the excitement because it is a totally new approach to MS therapy. But do not make long-term claims about this therapy, because it is so new and while some results seem to be very positive some are not.

But to turn that around, may I ask why there is not just as much excitement over this discovery of hemochromatosis and its relationship to MS? Why is this not generating the same enthusiasm, especially since a group of us with primary progressive MS might just be able to be treated/cured? Why aren't people with MS seizing on this discovery in the same way that they are seizing on CCSVI? Especially since people do not need thousands and thousands of dollars to bloodlet and at the same time be addressing the root cause of their illness? I find it offensive that the MS community is so willing to delegate the Primary Progressive population to the sidelines and say, oh sorry, Zamboni cannot help you! Is it because this discovery was made by a simple researcher? And it won't generate megabucks for surgeons? This is a major major discovery, on the same level as CCSVI believe it or not, people should be jumping up and down with glee, and all we get is caution/criticism? No, I don't get it. We can help people in poor countries, we can help PP MS if they are iron loaders, we can also prevent MS from happening in the first place!

Merlyn · Post by **Merlyn** » Wed Mar 17, 2010 10:57 am

LR1234-I understand your points, but at this juncture I don't think we have enough information to make conclusions about anything. I cannot believe that they didn't bring somebody into these investigations that maybe had a degree in experimental methodology. I mean how can they come to any sort of conclusions when they are not testing for iron in the brain in the control group that has stenosis? The whole thing is so poorly designed it is unbelievable.

We have no idea how many people have iron metabolism problems for the simple reason nobody's testing it. Therefore we are operating in complete darkness, with only partial information. Because of the lack of testing properly, we can make no conclusions about anything. We don't know how many people have developed MS because of abnormal iron metabolism. If you recall, I am the one that started asking people to test this, not any doctor. I also question why people can walk around for a few decades with missing valves etc. if that is the prime cause of they are developing MS. You cannot argue in any sane fashion that testing iron metabolism will in any way mess somebody up. It is a totally illogical argument, and until we test the general MS population, we will never have an idea of just how many of us fit anemia/or hemochromatosis. We need to know this, and I'm hoping a few other people will put a bit of energy into getting this word out rather than trying to discredit what we have found so far. I am just amazed at this response, you would think people with MS would want to know how relevant this discovery is to the general MS population instead of trying to somehow block people from testing their iron metabolism.

LR1234 · Post by **LR1234** » Wed Mar 17, 2010 11:53 am

I don't think anyone is trying to block people being tested!! I agree that its a harmless test which should be done. Heck I have been nagging my dr for months to look into this since the whole CCSVI/iron thing came up.

No-one is attacking the theory of overloading iron but there is also room for CCSVI to be part of the picture as well.

Merlyn · Post by **Merlyn** » Wed Mar 17, 2010 12:06 pm

LR1234-truce! I agree about the CCSVI simply because so much is not known at this time. I just took offense to the pharmacist MarkW coming up with this bizarre recommendation to test iron after the operation rather than before. To me the first step should be testing the iron metabolism, then proceed from there. We really do need to know how many people with MS are heterozygote iron loaders that can be treated effectively with phlebotomy. I find it so exciting, I just ordered 80 needles to see which ones work best for me.

Merlyn · Post by **Merlyn** » Wed Mar 17, 2010 12:08 pm

My order for blood collection sets from IMed went through without a problem. I am ordering them, sending them to my in-laws who will forward them to Canada. I suspect although I have not done it before, that they would get held up at the border. I am not recommending this for anyone by any means, I am just proceeding with my own instincts. I figure I could do about 15-20 phlebotomies without even worrying about anemia.