Phlebotomy anyone?

[katie45]

Nice to hear you're doing ok Bethr! Long haul for you too, I think. I'm hoping to get butterfly rigs thru mail and arrange low volume plebs...I simply don't buy that my whole family has hh but I have MS? not. we'll see...stay in touch here, k?

[1eye]

You are going to use "butterfly rigs" so I assume you mean you are going to draw your own blood. Need not tell you this might be risky for infection, but I was wondering, do all those draws not result in a very scarred vein on the inside of your arm? I have had so many blood tests and draws from there that it makes me wonder if that is why I cannot use the fingers on my left hand. That is the side where they always try to take blood. Lately they just can't do it. They always go immediately to the same vein on the right, and lately, again, that is impossible. They tried to do it in an ambulance again on both sides recently, and when they were going to go on to my other veins (also scarred), I had to stop them.

I know I have problems also on the same side leg but I have been wondering if I should blame some of my "MS" on damage from the hundreds of needles that have gone in my arms. Many many. They finally were using veins in my hands and feet when I was in the hospital for a couple of months at the age of 12. Then, I had daily blood tests, sometimes more than once in a day. The main bulk of the rest were when they were trying to diagnose my "MS". Once they had to do 10 tests on the same day. I think they have paid far too much attention to my blood. In the end they used none of that to diagnose me. Just one (1!) MRI report. I think only the radiologist ever looked at my MRI films because I only got the neuro to look by demanding it. Otherwise I don't think he would have. I almost wonder if "MS" is caused by doctors. They rely far too much on each other, and many never use their own eyes, even to make a life-changing diagnosis.

[Bethr]

On the long road of research on blood-letting I've come to realise that there definitely is something to it, in that I've read so many accounts of people feeling less symptoms by drawing blood. Also people with hepatitis C respond better to anti-viral drugs like interferon when they first have their iron reduced to low levels. The studies are there yet the stigma attached to bloodletting remains.

[katie45]

''You are going to use "butterfly rigs" so I assume you mean you are going to draw your own blood. Need not tell you this might be risky for infection, but I was wondering, do all those draws not result in a very scarred vein on the inside of your arm?..'' 1 eye, I see no other way to help myself...I always feel much better after a blood draw...ms pts are not permitted to donate blood in Canada so in this way we are held hostage to the ''no cause no cure'' MS empire...logic seems to totally evade the medical professionals. I wonder, Do we own our own blood? If not, who the heck does??

[katie45]

Bethr.. my older sister had to have liver transplant...they never tested for hh. younger sis and older and younger brothers are being phlebbed regularly and doing so much better! mother is carrier h63d, I am convinced she also has porph. hmmmm....then for me, I get the ms label? Can your brother convince doc to do trial phlebs? It would be so wrong to do liver t.p. when this is so treatable!

[katie45]

Bethr, thought I'd ask your opinion, if I can....I have been stuck with this undxed since I was 28...wonder if I actually got proper treatment at this late date,do you think it may still be reversible? been livivg out of w/chair for 10 yrs...Is it too late for recovery? Have you heard of other's being successfully treated?

[Bethr]

Katie45, so sorry for my late reply, I haven't visited for a while.
I really don't know the answer to that. We are all such individuals, and I'm sure our balances are all different and unique (like our genes and the innumerable combinations of same).
In some ways I feel my high iron protected me, and in other ways it messed me up, ie: cause the porphyria like symptoms (including the brain lesion) earlier on before I started to phleb. Research has shown that people with hemochromatosis regularly get brain lesions, but rarely any symptoms with them! So what's that about?
If only you could experiment with phlebs, being monitored by a dr. etc. if only....

Ultimately the whole mess in my case was caused by hypoxia, the iron loading, the sleep problems, failure to heal was a biggie for me too, big scars left from tiny scratches and muscles getting torn and not healing. I'm still left with high platelets and awaiting a trip to the hemotologist, but I feel well. platelets can be raised by chronic hypoxia, but I would have thought one year on they would abate. I suppose with me being minus a spleen they make take longer to be filtered out of my bloodstream.

[katie45]

Hi Bethr, glad you stopped in....I was in hospital a week ago...dehydrated, vomiting (never do that) pain,pain...know it was porph attack...stopped after they started iv, went home, drank fluids, ate carbs, started quinine...did test...neg!! further test in lab, will get results in a week. I never want to go thru that attack again! What the h is wrong with the med. system? I had been taking activated charcoal for a week before the attack. so wonder if that triggered it. I'm going to ask dr. again for trial phleb...How's your sister and bro doing?Keep us posted re hematologist apt? talk soon,

[Bethr]

Sorry to hear you've been unwell. I think the iron and porph are closely related, one sets off the other and they are often genetically linked especially PCT. My sister is pretty well lately, definitely northing getting worse for a while now. She broke her wrist earlier this year, fell over, as you do when you have little feeling in your legs, and that's taken a while to get moving again. My brother is being assessed again, maybe for a liver transplant or just more treatment, but his next appointment is 2014. Public system is deadly slow. No phlebs for him - I think it would seriously help him, so a shame they don't do it!

[katie45]

Hi Bethr, was thinking 'bout this chronic hypoxia...and the impact that smoking would have ( congrats, by the way) Do you feel quitting has been a big plus in this? I, too have smoked many years and hate admitting it since it has such a negative stigma attached!

[Bethr]

Absolutely Katie45, I thought I would never give it up, as I loved to smoke and I smoked a lot! Any time I tried to give up over the 35 years I'd be like a bear with a sore head and would have another smoke just to stop everyone else suffering my bad moods .

In the end I just put on the nicotine patches religiously and chewed so much nicotine gum my head hurt and I felt sick, but I just kept it up and it worked!
I stayed on the nicotine therapy for quite a while, but by that time that "ritual" side of smoking had faded and that helped.
Please do it, as I'm sure it helped me a lot. I will never have another cigarette, ever, ever, or I'd be back on them in a flash. I know that much, very addictive.

[Cece]

I was just thinking about this thread. Dr. Tucker posted an explanation of the possible focal hypertension effect of CCSVI in a different thread (arterial stenosis thread). One sideshoot of the theory was that blood flow that is more viscous would be worse for us. Blood-letting reduces the viscosity of the blood. I found one publication showing that pwMS have higher viscosity, but it was from over two decades ago. Anyway I still think you guys are on to something.

[Cece]

http://www.ncbi.nlm.nih.gov/pubmed/24314757

Neurophysiol Clin. 2013 Dec;43(5-6):303-12. doi: 10.1016/j.neucli.2013.09.004. Epub 2013 Oct 26.

Iron depletion induced by bloodletting and followed by rhEPO administration as a therapeutic strategy in progressive multiple sclerosis: A pilot, open-label study with neurophysiological measurements.

Créange A, Lefaucheur JP, Balleyguier MO, Galactéros F.



Author information



Abstract

OBJECTIVES:

To evaluate the concept that iron depletion (ID) induced by bloodletting and followed by recombinant human erythropoietin (rhEPO) administration could be a therapeutic strategy in progressive multiple sclerosis (PMS) and that it could be assessed by neurophysiological measurements.

PATIENTS AND METHODS:

In four patients with PMS, bloodletting was performed until ID was induced, and then rhEPO was administered (300UI/kg/week). The changes induced by the treatment were assessed by clinical scores, biological tests, and neurophysiological study of cortical excitability using transcranial magnetic stimulation techniques.

RESULTS:

The treatment was well tolerated except for muscle cramps and one popliteal vein thrombosis in a patient confined to chair. ID was obtained within 28 weeks and was associated with endogenous production of EPO. No bloodletting was further required during a six-month period after introduction of rhEPO. At the end of the follow-up (up to one year), fatigue and walking capacities tended to improve in two patients. Neurophysiological changes were characterized by an increased cortical excitability, including a decrease of motor thresholds and an enhancement of intracortical facilitation and cerebellothalamocortical inhibition.

CONCLUSIONS:

The combined ID-rhEPO therapy could authorize a prolonged administration of rhEPO in PMS patients, able to modify cortical excitability of the glutamatergic and gabaergic circuits. These preliminary data are encouraging to design a larger, controlled therapeutical trial to assess the value of such a strategy to improve functional symptoms in PMS patients, and maybe to prevent axonal degeneration. Neurophysiological measurements based on cortical excitability studies could provide sensitive parameters to evaluate treatment-induced changes in this context.

[Bethr]

I wonder if that study progressed to the next stage?

I'm doing really well, and have had no need to get more blood taken off. My iron/trans sat. stays in the normal range. My ferritin is up quite a bit, but I get tested every three months and it's not over recommended levels yet. I would prefer to keep ferritin down below 150 but with a hemochromatosis gene I'm probably stuck with it, especially now I have gone through menopause and have no natural bleeding. So long as my transferrin saturation stays down, I'm happy.

I did have a very small event of inflammation/loss of feeling down my right side late last year, I had an MRI and it showed a very small new lesion, but the numbness quickly went away and I have no deficit. My Neuro called my problems Benign MS. Even though what I have looks nothing like MS. The new lesion was in an area not usually associated with MS, so they also did a spinal tap and it came out totally negative. My problems came on after a long hike and some highly porphrogenic food (I know I shouldn't, but sometimes I just crave some of THOSE type foods, sausages etc LOL). So I'm still thinking a link to genetic porphyria in my case. I've had one positive test so far, but the testing is so difficult to get right all we could tell from that particular test was that it was not VP (variegate porphyria) . If I stay totally away from alcohol, caffeine and watch what preservatives/food additives I ingest I'm pretty good to go.

My sister is still going OK. Her MS type symptoms come and go, but she does like drink alcohol moderately and handle a lot of chemicals (hairdresser). I reckon that type of substance is a big problem for our family. My brother has made great progress with his health by changing his diet completely to cleanse and help his liver. He has quite a bit of energy now and his tests are showing the virus (hep.C.) to have abated to almost undetectable. It shows there is always hope, even when things look very dire. he's also not drinking alcohol, though never a big drinker anyway.

Well that's my update for the year - Hope some of you still look in here occasionally.

Bethr

[chenman]

Hi Bethr,
this is my very first post after registration.
I am an MD from Germany, had symptoms of possible MS in the early 1990s, but not sure at all. (I have to tell that "story" elsewhere.)
I searched in many directions. One thing I came up with was ferritin ca. 300 ng/ml, too high I thought. (I also had hematocrit of 51%: increased blood viscosity can impair CNS perfusion, make one tired, maybe cause or aggravate "brain fog"...)

So I convinced my GP to start a series of phlebotomies late in 1993. To make it short: It took almost 2 years to get my ferritin down below about 20...25 ng/ml. (I remember 11 ng/ml a few days after a phlebotomy, felt great with hemoglobin around 16 g/dl and Hct below 50%.)
I became a blood donor again (I had been one as a student) and donated 75 times in about 15 years, then was rejected permanently because I had had lung embolism.
I had quite a problem to find a doc to start me on phlebotomies again, but after more than a year succeeded.

Two of my older brothers had ferritin in the range of 600... 700. I urged them to get rid of their stored iron, and both GPs started serial phlebotomies. They have lower Hb / Hct values than I do, have normal blood pressure (I was hypertensive before getting rid of my stored iron), so they are ok with higher ferritin values, maybe 100.
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Does this have änything to do with MS - or more generally with neurodegeneration (i.e. progressive MS)?
I have done a lot of searching on that topic and am sure that storage of "surplus" iron in the body is a major factor in neurodegeneration (i.e. in Parkinson's disease: lots of papers / evidence on that available...).
Former Harvard med. chemistry prof. Randall B. Lauffer wrote 3 books on the topic of iron and human health 1991...93. The last one is the best one (well, he had practice by then!): "Iron and your heart", by no means confined to cardiovascular issues. He possibly was the first to write on iron storage and neurodegeneration (i.e. Parkinson's, Alzheimer's and stroke).
I highly recommend this book which can be bought used for 1 cent + 3.99 $ handling and shipping, when I last looked up prices.

I try to convince MS patients to have their ferritin determined at least once, and consider getting rid of surplus iron. In the US it is possible to become a blood donor with MS, if you are mobile (Julie ?Stachowiak wrote an article on that topic some time ago), which is not allowed in Germany.
I ?counsel a postmenopausal SP-MS woman in California since late summer 2013, and she became a blood donor immediately, got her ferritin down from ?164 to below 15 after 4 donations within half a year (shortest interval for donations is 56 days, about 2 months), if I recollect correctly.

Her progression has stopped, as far as it is possible to tell after little more than 2 years. She is doing well. (2 years ago she considered giving up her enterprise, but now keeps on in good spirit, hopes to stay well like I have for more than 15 years by now.)
However the main "intervention" is taking doxycycline on a regular basis, "pulsing" (like I have done for 20 years by now, starting in Jan. 1996), NOT taking it continuously - but that is "another story" I will have to tell elsewhere.
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I have no time to read all the older posts here. Cece referred to the phlebotomies in MS patients in France, East of Paris: Créange et al., Dec.2013. That was one of my arguments in counseling the MS patient in California: it has been done before (with approval of an ethics board), without negative consequences, but possibly favorable ones...
Good wishes to you,
chenman