Phlebotomy anyone?

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

Postby shye » Mon May 10, 2010 2:29 pm

Merlyn
Yes, stomach acids may kill most resident strains of probiotics taken orally because they are supposed to reside in the colon and should not have to go through the stomach and digestive process. Also, Lactobacillus acidophilus can only function in an acid medium. Acidophilus literally means 'acid-loving'. Many of us have alkaline colons, so this is often a major factor in the failure of acidophilus products. The colon should ideally be slightly acidic to support the proliferation of lactobacillus bacteria. The process of fermentation as in Dr Ohhira's Probiotic OMX 12+ overcomes this limitation.

There are also other manufacturer's that produce probiotics that overcome this limitation--just need to read labels. And once in the gut, these probiotics do implant.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 3:00 pm
Location: NYC

Advertisement

Postby Bethr » Tue May 11, 2010 12:20 am

shye wrote:Bethr
but our heart is electrical--and needs calcium, potassium, magnesium, sodium to run correctly, as well as the trace elements, esp copper.
I still think you could have an electrolyte imbalance.


Porphs commonly get hypomagnesemia and Hyponatremia in an attack,is that an electrolyte inbalance, which causes SIADH from memory, I'm not really up on that? How do you test for electrolytes?

I'm really new to all this. I've only ever practised the elimination diet (for my son), never really added anything in so to speak :)

Anyway, Ive got the holter monitor on now, I feel like a zyborg!
Once this is off, it's treatment time.
User avatar
Bethr
Family Elder
 
Posts: 476
Joined: Sun Dec 27, 2009 3:00 pm

Postby Bethr » Fri Jun 04, 2010 2:50 pm

Hi everyone, I had my second big phleb two days ago, and I'm feeling very well. I haven't had any chest pain or trembling this time, and haven't had any daytime sleeping either, in fact it's following the same course as last time, but I'm in a better place to start this time. Last phleb it took about 2-3 days for all the pain and stiffness to leave my knee and hip joints. I've only got twinges this time in left knee and right hip.

I've come a long way since January, I'm really getting back to my old self :D
I'll head off to the GP some time in the next month to see how my iron levels are looking, last test I was down to about ferritin 100, and trans. saturation down to about 42%.

I went back to my neuro earlier and he now thinks I don't have MS, and said to go for the phlebs if they help me, which they do immensely.
He's recommending a biochemist to look into my intolerance to higher iron levels and other environmental triggers, like the reaction to dental anesthetics. MCS, Porphyria, who knows.

All I know is that from now on I will be keeping my iron levels as low as I can via blood donation (without compromising my diet too much, I really like meat!)
User avatar
Bethr
Family Elder
 
Posts: 476
Joined: Sun Dec 27, 2009 3:00 pm

Postby jimmylegs » Fri Jun 04, 2010 5:14 pm

YOU GUYS i met a guy with HC today he was so surprised i knew what it was. also got dx'd with diabetes in the last couple days. the docs had said he would eventually get diabetes for sure, having HC. anyone else here with HC *and* diabetes?
jimmylegs
Volunteer Moderator
 
Posts: 9152
Joined: Sat Mar 11, 2006 3:00 pm

Postby dlb » Fri Jun 04, 2010 8:38 pm

JL,
If you don't mind my asking... have you ever had the iron panels done? Only ask because I think you monitor your blood quite regularly!

I haven't yet, as I never feel up to the challenge that so many of you seem to have, in order to get a doc to listen to this idea. I'm sooo intrigued by this theory, because my paternal grandfather had some kind of condition & he had to either regularly donate blood or go to the hospital for blood draws. He passed years ago (like 45 or so) and no one knows what his condition was - just that he had "thick" blood, or "too much blood". These are the references my aunts & uncles use when they talk about Grandpa. The other thing is that I have a very strong family history of MS on my fathers side (there are 6 members of the family, that have been dx'd). None in my father's immediate family, but 4 in my generation - 2 brothers in one family, then one of their children has a diagnosis & also one of the sisters in this family has a child with MS. On the HH.org site, they have a chart that demos the genetics. I'm wondering if my father & his siblings may be carriers, matched by marriage with other carriers?? That may be why 3 families out of 11 siblings in Dad's family have MS happening??? I guess I just have to ask one day for the tests & dig a little more into this! Comments from anyone - I really am interested in what you all think???? Have to say that this subject fascinates me!
Thanks, Deb
Last edited by dlb on Sat Jun 12, 2010 10:41 am, edited 1 time in total.
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Postby jamit » Mon Jun 07, 2010 8:28 am

Iron is not all bad, but the optimal level is hard to find.

I was diasgnosed with RLS in addition to MS. I never thought I could be iron defiecient have never been anemic, had my ferritin level checked 8 months ago it was 50, my neurologist just told me to up the requip which never did anyting much to begin with. I then started to look elsewhere.

Most toxic metals compete with iron and I suspected I had mercury poisening and thus had been eating a lot of cilantro with subsequent barley or wheat grass to get rid of it. I did not know that mercury prevented the iron from getting absorped.

6 months later and only because I went to a GI my ferritin was 6 and my saturation was also just 6% and the unbound protein level some 350. I had the various endo and colonoscopies to make sure I was not bleeding which I was not.

I started taking liquid iron with herbs 50 mg of iron/day and the RLS which I have had for two solid years started to go away. A month ago my ferritin level was 28 and saturation 7. I still take iron.

I think my ferritin was fine the first year of RLS, but perhaps it was not, I could have been too high, I did not have the ferritin tests back then, I wish I had. Since my rls has now almost gone away I wonder what the optimal level really is, I have been told the ferritin level is inaccurate it is really the saturation % that is the important indicator, but I had bad spasms when my ferritin was 50 and the same bad at 6 and almost none when it was 28. Perhaps The ideal range who knows for people with MS is much narrower. I will have the level checked in a few weeks.

Of course, then I thought perhaps the RLS was not RLS since requip never did anything (nor did baclofen so not MS spasms either). Perhaps the mercury caused the spasms and when I started the cilantro/barley grasse the iron level got too low and only then contributed to the spasms. Who knows but it sure it sure is not straight forward.

Now the RLS is going away with taking iron but at a lower level.
User avatar
jamit
Family Member
 
Posts: 54
Joined: Sun Nov 01, 2009 3:00 pm

Postby Bethr » Mon Jun 07, 2010 2:10 pm

That's really interesting Jamit. I've figured I need to get my ferritin down to around 20-50. My transferrin saturation is always quite high (over 40%), so it will be interesting to see how I feel if I can get it down. This is definitely about balancing your iron levels I feel.
I have one gene for hemochromatosis C282Y, and that means I tend to load some extra iron. One in 7 Europeans have this tendancy and carry a single HH gene. It's interesting how the prevalence of hemochromatosis in certain nationalities is similar to MS, ie: Scottish/Irish.

I know that I function much better at lower iron levels.
Highish iron makes me heavy, tired, sleepy and my joints ache, I also had hyperpigmentation form on my arms over the past few years, it's called melanosis. But according to the doctors, I'm have high normal iron levels, and that's just fine :?
If i couldn't donate blood, I'd be stuck in a very bad place, as the hemotologist i saw said that "phlebotomy belonged in the dark ages".

I've heard they are using leaches for help with re-attaching severed body parts. Funny how things come around again! :lol: :lol:
User avatar
Bethr
Family Elder
 
Posts: 476
Joined: Sun Dec 27, 2009 3:00 pm

Postby jamit » Mon Jun 07, 2010 2:56 pm

Beth, interesting, I should note that I have forgotten all about the "heavy limbs" which I have not had for several years, hm perhaps due to the lower iron. I also used to have quite a it of back pain which is gone, but I attribute that to the spasms that were so bad I walked, and waddled and stumbled around at all hours to get rid of the spasms so they actually got me in better shape because who wants to waddle around with an afo and two canes all night long unless forced to.
User avatar
jamit
Family Member
 
Posts: 54
Joined: Sun Nov 01, 2009 3:00 pm

Postby jimmylegs » Mon Jun 07, 2010 2:57 pm

dlb, i have regularly had my iron levels taken since well before dx. because i was a strict vegetarian. levels were usually on the low side and i generally supplement iron to keep things in line.
jimmylegs
Volunteer Moderator
 
Posts: 9152
Joined: Sat Mar 11, 2006 3:00 pm

Postby shye » Mon Jun 07, 2010 4:04 pm

Jimmylegs-
rule of thumb with iron is NEVER supplement until problem officially diagnosed--just being on the low side means nothing. Below the norm? then get a diagnosis--this can be for various reasons, most NOT being low iron, but rather a problem in the use of the iron one has--often a vitamin or mineral deficiency (copper, B6 the usual culprits).
Iron is dangerous, and not just for MSers, in anything over low amounts.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 3:00 pm
Location: NYC

Postby Bethr » Mon Jun 07, 2010 5:00 pm

The latest research is showing that your immune system and iron metabolism is one in the same. The immune system signals for iron stored away in hard to get places when under threat, and is regulated by hepcidin (a hormone). T lymphocytes (killer T's) can grab iron, and they also regulate hepcidin. Lots of great research is being done, but it doesn't seem to have filtered down to the patient/doctor level yet.

If the immune system and iron metabolism are one and the same, then I'm sure we will hear a lot more over the coming years in relation to many maladies, including MS.

All I know is that I feel much better when my iron levels are lower and I am genetically programmed to absorb more than I need to keep healthy.
May have been a very handy gene to have during a famine, but unhealthy in a feast. Watch those cereals, they are absolutely loaded, and I heard in the States that they add iron to flour and it's compulsory! :?
User avatar
Bethr
Family Elder
 
Posts: 476
Joined: Sun Dec 27, 2009 3:00 pm

Postby shye » Thu Jun 10, 2010 3:25 pm

Well, I got my genetic results a few weeks ago--
heterozygous for H63D mutation

my osteopathic dr felt I should go for a phlebotomy as a general donor first, to see how it affected me--she warned me I would feel terrible!
Have been trying for number of weeks--first had lacerated my ankle that needed stitches, so had to wait til stitches out (their rule), then my Pulse rate was too high (by only 2 points!)--but finally had first phlebotomy yesterday.
Surprised at how mundane it all was--fairly quick, except I must have the thick blood talked about on this site, hard time getting it to flow--nurse even had to use a sort of plier device with bearings to push the blood to move thru the collecting tube--she made it clear she did not want questions, so I just observed. But at the start (they had first taken a prick of blood for a hemoglobin level) she said "wow, you have a lot of iron." (they have no idea why you are there if you are just a general donor like I was--no health history taken) I did ask why she said that, and she said my hemoglobin was hgh.
Anyway, ended up immediately with more energy than usual (not super great, but better than usual) and during last night kept waking due to the deep pains in my lower back area--and a bit in central spine, as well as in 1st three fingers of each hand. Today the lower back fine, fingers still a bit of the pain, But energy (including mental) pretty good.
I will see the osteopath tomorrow, to discuss bloodletting more than the every 56 days allowed for regular donors.
My last ferritin was in the 70's, and according to the various sites, best to have it 10-30. If I say I will just aim for 30, maybe my dr will agree.
So won't know till tomorrow how often will be doing this, but definitely will do the every 56 days even if dr negates more often.
Will post tomorrow after see dr.

But Beth you get the deep bone pain also -- I think you refer to it as nerve pain--any thoughts on what that is from? Clearly I think too early for iron to be being pulled out of tissue and bone--so what is it
from?? also, to get more energy immediately could not have anything to do with iron, I think. Is your blood thick also? maybe getting the thickness decreased has something to do with the immediacy of results????

And Merlyn, haven't seen you here in a while--hope all is okay. I want to send you a million thanks, and then a million more, for your insistance on your view of HH being root of MS--just from this one bloodlet I know it definitely has much to do with my problems. And I never would have suspected it on my own. Again, profound thanks...

Addendum added at 9 PM--still going strong, not sleepy at all--usually can't keep eyes open at this hour, unless slept the day away (which I did not do at all today)--definitely big changes here!!!
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 3:00 pm
Location: NYC

Postby Bethr » Thu Jun 10, 2010 5:49 pm

Sometimes I think that it's all just because I have thick dirty blood :lol:
The spleen (which I don't have), and haven't had for 35yrs cleans out red cells from memory amongst other things.

My first phleb took about 15 minutes, the second only took 7 minutes!
I was feeling pretty good prior to that second phleb anyway, and didn't get the "High" that I got the first time. Still, I haven't had any fatigue or daytime sleeping since last Thursday (phleb day).

So still on track and I'm feeling pretty good I had bit of nerve pain last week going down my right thumb, nothing too much, and then a couple of days ago the thumb joint swelled up and got really painful and it felt freezing cold. Went to the Dr. this morning, even though it's getting better now, and he said Raynaud's Syndrome. Anyone one had that?
I've heard it's often secondary to Porphyria and Lupus etc.

Felt like a frozen sprain, very strange feeling, and also got lots better in the hot shower. Makes a change to my hand going numb in the shower 08/09. Same hand. I have my possum gloves on now ...Hmmmm....
Warm is good.
User avatar
Bethr
Family Elder
 
Posts: 476
Joined: Sun Dec 27, 2009 3:00 pm

Postby shye » Fri Jun 11, 2010 4:01 am

BethR
Yes, I have Reynaud's syndrome as well (and suspected porphyria)--interesting, this is all dovetailing--all the things drs have been aware of for YEARS about me, but have all been looked at as separate (even if by same doctor)--definitely NO connecting the dots with the current medical training.
article that will interest you BethR
re iron and immune system
http://misc.mailarchive.ca/health.alter ... /0384.html

It seems though that your blood is not thick right now, if your phlebotomy took only 7 minutes--mine took at least three times as long, and I think maybe longer--will time the next one (as well as take ginko, Vit E etc beforehand).
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 3:00 pm
Location: NYC

Postby jimmylegs » Fri Jun 11, 2010 1:10 pm

shye, i monitor all my vitamin and mineral levels with lab work, to ensure everything is as optimal as i can make it, including possible contributors to low iron levels. having been a strict vegan in the early days gives a result that is low enough to warrant action (the scale in my lab goes something like: deficient, probably deficient, possibly deficient, probably not deficient etc... that kind of scale). i am content when my ferritin level gets up into the 'probably not deficient' range.
jimmylegs
Volunteer Moderator
 
Posts: 9152
Joined: Sat Mar 11, 2006 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service