Phlebotomy anyone?
Re: Phlebotomy anyone?
Still doing really well on Benfotiamine, much more mobile because I am just not "contracting" my muscles involuntarily. Energy is better, digestion is better. Feel much more comfortable physically, great reduction in pain because I am just not as brittle. What I cannot figure out is that the relief I am feeling basically mimics the relief that I got from the phlebotomies... I have no clue why the reduction of symptoms mirrors each other. Down another rabbit hole...
Re: Phlebotomy anyone?
This is an excellent excellent summation of Dr. Klenner's work. Notice the quantity of vitamin B1 that he found necessary... I noticed very little from the Benfotiamine until I get up to 600 mg... I am taking 1050 mg and that seems to be a good dose for me. Yesterday, (I am almost crying here because it is so amazing to me), I could flex my left hand multiple times... my left thumb is still folding down, but I could move all four fingers!!! My hand was frozen into a fist... my caregivers are commenting on the flexibility of the joints of my fingers. I do take B. complex, and I have started to experiment with all of the coenzyme forms of B. vitamins... Methylfolate, methylcobalamin, P5P, niacinamide, just ordered a bunch of Brewers yeast... seriously folks, I thought my left hand would never ever respond to my brain commands ever again. Dr. Klenner says that MS was really the result of microscopic hemorrhages in the central nervous system! Please please please, if you can afford it, if you can tolerate it, try higher dosages of the Benfotiamine just to see if it helps... I am so so grateful...
http://www.hfme.org/drklennersbprotocol.htm
B1 as sublingual coenzymated thiamine (TDP or TPP) , benfotiamine or liposomal thiamine is the best choice for patients that cannot yet access vitamin B1 injections. High enough doses of these types of B1 may in fact have the same effect as 400 mg of thiamine injected daily. But as yet the research on the success of this substitution and how it should best be done has not been completed and so sticking with the daily injections is seen as the safest way to go.
In the late thirties, Stern from Columbia University, was employing thiamin hydrochloride intraspinally with astonishing results in Multiple Sclerosis. He reported taking patients to the operating room on a stretcher, and following 30 mg. thiamin given intraspinally, they would walk back to their room. The response was relatively transient, but it led Stern to believe that Multiple Sclerosis was nothing more than vitamin B1 avitaminosis, the modus operandi being damage to the filter bed of the choroid plexus.
The nerve damage is the result of microscopic hemorrhages in the central nervous system. With the contraction of the scar at the site of bleeding, the vessels carrying nutrients to the nerve cells are virtually clamped off. This leaves nerve tissue, in many instances, alive but not capable of work. As time goes on, this wasting of nerve tissue results in loss of its myelin protection. This is similar to electrical wires that have lost their insulation when exposed to the wear of daily use, or exposure to the elements.
The problem is supply and demand. In this light, Dr. Leon Rosenberg of Yale University Medical School, in working with B vitamins, distinguishes between vitamin-deficiency diseases and vitamin-dependent diseases. He states that the successful treatment of vitamin-dependent diseases requires dosages up to 1,000 times the calculated minimal daily requirement. 1.3 mg. has been established for thiamin hydrochloride which would indicate that in the pathological conditions being considered, the daily requirement would be at least 1300 mg.
http://www.hfme.org/drklennersbprotocol.htm
B1 as sublingual coenzymated thiamine (TDP or TPP) , benfotiamine or liposomal thiamine is the best choice for patients that cannot yet access vitamin B1 injections. High enough doses of these types of B1 may in fact have the same effect as 400 mg of thiamine injected daily. But as yet the research on the success of this substitution and how it should best be done has not been completed and so sticking with the daily injections is seen as the safest way to go.
In the late thirties, Stern from Columbia University, was employing thiamin hydrochloride intraspinally with astonishing results in Multiple Sclerosis. He reported taking patients to the operating room on a stretcher, and following 30 mg. thiamin given intraspinally, they would walk back to their room. The response was relatively transient, but it led Stern to believe that Multiple Sclerosis was nothing more than vitamin B1 avitaminosis, the modus operandi being damage to the filter bed of the choroid plexus.
The nerve damage is the result of microscopic hemorrhages in the central nervous system. With the contraction of the scar at the site of bleeding, the vessels carrying nutrients to the nerve cells are virtually clamped off. This leaves nerve tissue, in many instances, alive but not capable of work. As time goes on, this wasting of nerve tissue results in loss of its myelin protection. This is similar to electrical wires that have lost their insulation when exposed to the wear of daily use, or exposure to the elements.
The problem is supply and demand. In this light, Dr. Leon Rosenberg of Yale University Medical School, in working with B vitamins, distinguishes between vitamin-deficiency diseases and vitamin-dependent diseases. He states that the successful treatment of vitamin-dependent diseases requires dosages up to 1,000 times the calculated minimal daily requirement. 1.3 mg. has been established for thiamin hydrochloride which would indicate that in the pathological conditions being considered, the daily requirement would be at least 1300 mg.
Re: Phlebotomy anyone?
Genetic beriberi
http://www.socialanxietysupport.com/for ... sad-50694/
Genetic beriberi. An inherited medical condition in which the body cannot absorb thiamine from food. Example of genetic beriberi may include subacute necrotizing encephalopathy (SNE), maple syrup urine disease and lactic acidosis.
Genetic beriberi is fairly rare, so I'll explain it. It is genetic condition in which the person gradually loses the ability to absorb vitamin B1 (thiamin) through the stomach lining. The effect of B1 starvation is very much like a systemic, slow-moving MS because when the body goes into B1 starvation, it harvests B1 from the myelin coating of the nerves. According to medical studies, beriberi is "not supposed to occur" in North America, so it was 15 years after I first began experiencing moderate pain/symptoms that I finally got diagnosed. The treatment is very simple - liquid B1 is injected and absorbed via the muscles. Remyelination takes time, but is possible.
I wanted to let you all know about an underdiagnosed condition called genetic vitamin B1 deficiency, or "genetic beriberi". The Singhalese phrase "beri beri" translates literally into "I can't, I can't", an apt description of the debilitating effects that vitamin B1 deficiency has on a person. It has symptoms that are very similar to the pain and fatigue that people who have MS and/or Fibromyalgia experience, so if you have wondered if you have MS or Fibromyalgia, have been diagnosed with MS or Fibromyalgia, or know someone who has MS or Fibromyalgia, please read the info under the cut, it could save lives. Please note that I do recognise the existence of Fibromyalgia, I am just concerned about misdiagnosis because the symptoms can be so similar.
Comprehensive info & symptom list behind the cut . . .
Genetic vitamin B1 deficiency is supposed to be rare, but I believe it is more underdiagnosed than rare based on one doctor's finding four people who have it once she started testing for it. I believe that the four people were discovered over a period of a few years. That's a lot for just one doctor testing.
Genetic beriberi arises from a yet unknown/unmapped genetic instruction that tells the body to lessen and eventually stop its digestion of vitamin B1 (also called thiamin or thiamine). This is similar to the lessening of absorbtion of vitamin B12 that some people experience as they grow older, a condition for which people were seldom tested decades ago but which is commonly looked for now.
Genetic beriberi CAN BE FATAL. It can cause irreparable lesions in the brain. It causes fatigue at the mitochondrial level of the cell because the mitochondria cannot produce energy efficiently without vitamin B1. It can cause brain stem changes. It strips myelin from the nerves, including the nerves of the brain. It is also incredibly easily treatable, and it appears that a great deal of the muscular damage/disability and some of the cognitive problems it causes can be reversed.
In North America and Europe, doctors on the whole DO NOT test for vitamin B1 deficiency/beriberi unless the person is suffering from overall malnutrition, or unless the person is a chronic alcohol abuser who does not take much vitamin B1 in through their diet. A person with genetic vitamin B1 deficiency can be in serious vitamin B1 starvation without appearing malnourished, without ever touching a drop of alcohol, and while taking in ample vitamin B1 through their diet. The problem with the genetic variant of beriberi is that no matter how much vitamin B1 the person is eating or taking orally in the form of vitamins, the body's mechanism to break it down in the intestines is malfunctioning and therefore B1 passes unutilized through the system and is excreted intact. MOST DOCTORS DO NOT KNOW THAT A GENETIC FORM OF BERIBERI EXISTS, THEREFORE THEY DO NOT LOOK FOR IT EVEN IF THE PERSON DISPLAYS SEVERE SYMPTOMS OF IT. The National Institute of Health (U.S.A.) http://www.nlm.nih.gov/medlineplus/ency ... 000339.htm does now recognise that genetic beriberi exists, but only because I wrote them citing my doctor's research into it after she diagnosed me with it and asked them to please look into it and post information about it on their beriberi page. Genetic beriberi is only on the very edge of medical recognition at this time, so people need to spread awareness of it to those who may have it. It can be found by a simple blood test - merely finding out the level of B1 present in a person's blood. It is treatable by the person injecting vitamin B1 (for life) since though the stomach can no longer break the B1 down, the muscle tissues still can.
The symptoms of genetic beriberi can vary widely from person to person. There is a possibility that the lessening of B1 absorbtion can happen quickly or over decades (no one is sure what dictates the time frame for absorbtion shutdown). When the body goes into B1 starvation, it harvests B1 from the myelin sheath covering the nerves as this is the body's best source of "backup" vitamin B1. Loss of myelin results in symptoms that are similar to MS and Fibromyalgia
The symptoms can include but are not limited to:
Increasing tingling and loss of sensation, beginning with the extremities and working toward the torso. Tingling may or may not be present and can be present in some extremities but not others.
Loss or lessening of ability to taste food or smell odors. Can be mistaken for a similar side effect of depression.
Loss of hair on the backs of fingers, hands, feet, and toes
Loss of hair on arms
Thinning of hair on the head
Increasingly poor vision
Increasingly poor hearing
Trouble thinking/cognitive fogginess
Memory problems, long or short-term or both
Unexplained fatigue
Unexplained pain, pain that is non-responsive or barely resposive to pain medication
Unexplained muscle stiffness, stiffness that is non-responsive or barely responsive to muscle relaxants
Difficulty writing or holding a pencil, much like that seen in Carpal Tunnel Syndrome, may be misdiagnosed as Carpal Tunnel Syndrome despite additional numbness of other parts of the body
Irritability
Depression
Pain that has been diagnosed as "psychosomatic"
Pitting edema in warm extremities
Increasing problems with muscle coordination
Increasingly frequent falls
Change in gait
Increasing problems with balance
Trouble with word recall and speech syntax
Increasing problems with muscular coordination of speech/slurring words
Unexplained muscle weakness
Insomnia or sleep disturbances
Sudden Cardiac Failure
Headaches
Anger over & above the norm for situations
Poor or heightened appetite
Crying jags (my experience, I don't know about anyone else)
Antidepressants or mood stabilizers have little to no effect on mood
Swelling at base of neck despite thyroid levels being normal
Eyes pronounced/slightly bulging despite thyroid levels being normal (my experience)
Self-mutilation or binding of extremities as a way of coping with tingling and lack of sensation (especially if the individual has limited or no means of verbal expression), can be mistaken for suicide attempts
Rocking, listening to loud music, banging head/causing pain or injury to oneself, frequent or constant swiveling in swivel chair, or other means of heightening sensory input since touch, taste, hearing, and smell are dulled
A label of "Overdependence" on others as cognitive function wanes, ability to process emotions wanes, and pain wears the person down
Change in handwriting (my experience)
Inability to comprehend, plan, or carry out activities that once presented no difficulty
Difficulty focusing/concentrating
Loss of interest in sex/can't feel much physical sensation sexually/unable to achieve orgasm because the person cannot get enough stimulation to do so despite what should be adequate or more than adequate stimulation
"Dwelling" on problems -- cognitive and emotional processing are lessened, so person makes repeated unsuccessful attempts to cope with stress
Increasing muscle tics or spasms (my experience)
An official/medical/psychological characterization of the person as being unwilling to face their problems/overcome their challenges when people who know the person well know the person is making every effort to address the problem (this just seems to be a trend in those diagnosed)
Neurological deterioration
Deterioration of heart, brain, and peripheral nervous system
Healing from beriberi is painful as the myelin rebuilds and nerves regain feeling, but the pain does abate and the muscles can again become functional to a great degree (too small a sample size so far to say how much). Though I referred to Ruth Ryan, M.D.'s (along with Suzanne T.V.P. Sundheim, M.D. and Bronwen Magraw, M.D.) paper "Beriberi Unexpected", I take all responsibility for the above content and any unintentional misinformation it may contain. Persons with genetic beriberi may need to boost their intake of other B and water-soluble vitamins while the system's B1 level is restored. Consumption of fermented teas and fish may interfere with absorbtion of B1.
Thanks for your time and take care
__________________
The Food & Drug Administration (FDA)
It's the government's way of trying to protect you from protecting yourself.
•
http://www.socialanxietysupport.com/for ... sad-50694/
Genetic beriberi. An inherited medical condition in which the body cannot absorb thiamine from food. Example of genetic beriberi may include subacute necrotizing encephalopathy (SNE), maple syrup urine disease and lactic acidosis.
Genetic beriberi is fairly rare, so I'll explain it. It is genetic condition in which the person gradually loses the ability to absorb vitamin B1 (thiamin) through the stomach lining. The effect of B1 starvation is very much like a systemic, slow-moving MS because when the body goes into B1 starvation, it harvests B1 from the myelin coating of the nerves. According to medical studies, beriberi is "not supposed to occur" in North America, so it was 15 years after I first began experiencing moderate pain/symptoms that I finally got diagnosed. The treatment is very simple - liquid B1 is injected and absorbed via the muscles. Remyelination takes time, but is possible.
I wanted to let you all know about an underdiagnosed condition called genetic vitamin B1 deficiency, or "genetic beriberi". The Singhalese phrase "beri beri" translates literally into "I can't, I can't", an apt description of the debilitating effects that vitamin B1 deficiency has on a person. It has symptoms that are very similar to the pain and fatigue that people who have MS and/or Fibromyalgia experience, so if you have wondered if you have MS or Fibromyalgia, have been diagnosed with MS or Fibromyalgia, or know someone who has MS or Fibromyalgia, please read the info under the cut, it could save lives. Please note that I do recognise the existence of Fibromyalgia, I am just concerned about misdiagnosis because the symptoms can be so similar.
Comprehensive info & symptom list behind the cut . . .
Genetic vitamin B1 deficiency is supposed to be rare, but I believe it is more underdiagnosed than rare based on one doctor's finding four people who have it once she started testing for it. I believe that the four people were discovered over a period of a few years. That's a lot for just one doctor testing.
Genetic beriberi arises from a yet unknown/unmapped genetic instruction that tells the body to lessen and eventually stop its digestion of vitamin B1 (also called thiamin or thiamine). This is similar to the lessening of absorbtion of vitamin B12 that some people experience as they grow older, a condition for which people were seldom tested decades ago but which is commonly looked for now.
Genetic beriberi CAN BE FATAL. It can cause irreparable lesions in the brain. It causes fatigue at the mitochondrial level of the cell because the mitochondria cannot produce energy efficiently without vitamin B1. It can cause brain stem changes. It strips myelin from the nerves, including the nerves of the brain. It is also incredibly easily treatable, and it appears that a great deal of the muscular damage/disability and some of the cognitive problems it causes can be reversed.
In North America and Europe, doctors on the whole DO NOT test for vitamin B1 deficiency/beriberi unless the person is suffering from overall malnutrition, or unless the person is a chronic alcohol abuser who does not take much vitamin B1 in through their diet. A person with genetic vitamin B1 deficiency can be in serious vitamin B1 starvation without appearing malnourished, without ever touching a drop of alcohol, and while taking in ample vitamin B1 through their diet. The problem with the genetic variant of beriberi is that no matter how much vitamin B1 the person is eating or taking orally in the form of vitamins, the body's mechanism to break it down in the intestines is malfunctioning and therefore B1 passes unutilized through the system and is excreted intact. MOST DOCTORS DO NOT KNOW THAT A GENETIC FORM OF BERIBERI EXISTS, THEREFORE THEY DO NOT LOOK FOR IT EVEN IF THE PERSON DISPLAYS SEVERE SYMPTOMS OF IT. The National Institute of Health (U.S.A.) http://www.nlm.nih.gov/medlineplus/ency ... 000339.htm does now recognise that genetic beriberi exists, but only because I wrote them citing my doctor's research into it after she diagnosed me with it and asked them to please look into it and post information about it on their beriberi page. Genetic beriberi is only on the very edge of medical recognition at this time, so people need to spread awareness of it to those who may have it. It can be found by a simple blood test - merely finding out the level of B1 present in a person's blood. It is treatable by the person injecting vitamin B1 (for life) since though the stomach can no longer break the B1 down, the muscle tissues still can.
The symptoms of genetic beriberi can vary widely from person to person. There is a possibility that the lessening of B1 absorbtion can happen quickly or over decades (no one is sure what dictates the time frame for absorbtion shutdown). When the body goes into B1 starvation, it harvests B1 from the myelin sheath covering the nerves as this is the body's best source of "backup" vitamin B1. Loss of myelin results in symptoms that are similar to MS and Fibromyalgia
The symptoms can include but are not limited to:
Increasing tingling and loss of sensation, beginning with the extremities and working toward the torso. Tingling may or may not be present and can be present in some extremities but not others.
Loss or lessening of ability to taste food or smell odors. Can be mistaken for a similar side effect of depression.
Loss of hair on the backs of fingers, hands, feet, and toes
Loss of hair on arms
Thinning of hair on the head
Increasingly poor vision
Increasingly poor hearing
Trouble thinking/cognitive fogginess
Memory problems, long or short-term or both
Unexplained fatigue
Unexplained pain, pain that is non-responsive or barely resposive to pain medication
Unexplained muscle stiffness, stiffness that is non-responsive or barely responsive to muscle relaxants
Difficulty writing or holding a pencil, much like that seen in Carpal Tunnel Syndrome, may be misdiagnosed as Carpal Tunnel Syndrome despite additional numbness of other parts of the body
Irritability
Depression
Pain that has been diagnosed as "psychosomatic"
Pitting edema in warm extremities
Increasing problems with muscle coordination
Increasingly frequent falls
Change in gait
Increasing problems with balance
Trouble with word recall and speech syntax
Increasing problems with muscular coordination of speech/slurring words
Unexplained muscle weakness
Insomnia or sleep disturbances
Sudden Cardiac Failure
Headaches
Anger over & above the norm for situations
Poor or heightened appetite
Crying jags (my experience, I don't know about anyone else)
Antidepressants or mood stabilizers have little to no effect on mood
Swelling at base of neck despite thyroid levels being normal
Eyes pronounced/slightly bulging despite thyroid levels being normal (my experience)
Self-mutilation or binding of extremities as a way of coping with tingling and lack of sensation (especially if the individual has limited or no means of verbal expression), can be mistaken for suicide attempts
Rocking, listening to loud music, banging head/causing pain or injury to oneself, frequent or constant swiveling in swivel chair, or other means of heightening sensory input since touch, taste, hearing, and smell are dulled
A label of "Overdependence" on others as cognitive function wanes, ability to process emotions wanes, and pain wears the person down
Change in handwriting (my experience)
Inability to comprehend, plan, or carry out activities that once presented no difficulty
Difficulty focusing/concentrating
Loss of interest in sex/can't feel much physical sensation sexually/unable to achieve orgasm because the person cannot get enough stimulation to do so despite what should be adequate or more than adequate stimulation
"Dwelling" on problems -- cognitive and emotional processing are lessened, so person makes repeated unsuccessful attempts to cope with stress
Increasing muscle tics or spasms (my experience)
An official/medical/psychological characterization of the person as being unwilling to face their problems/overcome their challenges when people who know the person well know the person is making every effort to address the problem (this just seems to be a trend in those diagnosed)
Neurological deterioration
Deterioration of heart, brain, and peripheral nervous system
Healing from beriberi is painful as the myelin rebuilds and nerves regain feeling, but the pain does abate and the muscles can again become functional to a great degree (too small a sample size so far to say how much). Though I referred to Ruth Ryan, M.D.'s (along with Suzanne T.V.P. Sundheim, M.D. and Bronwen Magraw, M.D.) paper "Beriberi Unexpected", I take all responsibility for the above content and any unintentional misinformation it may contain. Persons with genetic beriberi may need to boost their intake of other B and water-soluble vitamins while the system's B1 level is restored. Consumption of fermented teas and fish may interfere with absorbtion of B1.
Thanks for your time and take care
__________________
The Food & Drug Administration (FDA)
It's the government's way of trying to protect you from protecting yourself.
•
Re: Phlebotomy anyone?
A quick update for those still following the phlebotomy idea. We have a Dr. who will trial taking blood from my sister and monitor the effects. Iron studies have been done yesterday and will be redone as we progress.
I am still having a pint taken every 3-4 months with ever improving health.
I am turning 50 in a couple of months, and to celebrate the family are going skiing, something I haven't done for years because of weakness and fatigue. I'm confident I'm up to it again.
I'm also horse riding again. I really hope this works for my sister too.
We really have to try.
For me, no more brain events to report either, just improvements 2yrs+.
Cheers...........
Disclaimer: Our family seem to get both MS and high iron levels (C282Y carriers for hemochromatosis). These circumstances may be unique to us and phlebotomy would definitely not be a regular MS treatment.
For all we know the higher iron levels may have protected us from worse outcomes.
I am still having a pint taken every 3-4 months with ever improving health.
I am turning 50 in a couple of months, and to celebrate the family are going skiing, something I haven't done for years because of weakness and fatigue. I'm confident I'm up to it again.
I'm also horse riding again. I really hope this works for my sister too.
We really have to try.
For me, no more brain events to report either, just improvements 2yrs+.
Cheers...........
Disclaimer: Our family seem to get both MS and high iron levels (C282Y carriers for hemochromatosis). These circumstances may be unique to us and phlebotomy would definitely not be a regular MS treatment.
For all we know the higher iron levels may have protected us from worse outcomes.
Re: Phlebotomy anyone?
The ski trip didn't go down well 
. I got really ill at high altitude after 24 hours and my iron levels doubled almost instantly, serum iron was way over range, and my transferrin saturation shot up to 51% according to the tests done on our return. I couldn't breath and felt really weird and spacey and just had to return to sea level. I reckon this was a big clue to why my iron levels keep on spiking high, I believe I've been hypoxic, and lacking oxygen in the blood, and it was a sum of a number of things. I gave up smoking last year, and felt much better for it, but that couldn't be all of the story.
Going to altitude just tipped the scale for me.
It all fell into place when last month I had a cyst the size of a golfball removed from my throat, centre front. I feel like I can breath and swallow now, and I sleep like a baby at night. This has been a huge fix for me. It must have been growing slowly for years, and slowly cutting off my airway. It moved around, at it was attached the the back of the tongue and could have been blocking my airways in my sleep. I believe my blood lacked oxygen, I started to get a type of secondary polycythemia (thick blood), and because I have a hemochromatosis gene, my body could respond by absorbing more iron and making more and more haemoglobin. No matter how many phlebs i did my haemoglobin never went under about 145!
Not having a spleen, just added to my problems (as it filters the blood, stores iron etc.).
The phlebotomies would have worked something like an oil change! And I needed them regularly to stay active.
I'm hoping I won't need them any more now that I've sorted out why I wasn't getting enough oxygen. My blood tests to be done in December will be very interesting!
And this all started with a Nuerologist telling me I probably had MS
It certainly links somewhat in with CCSVI, but from another angle.
Many causes for similar outcomes? MS is really complicated, what!
How are you keeping Merlyn? Haven't heard from you in a while
. I got really ill at high altitude after 24 hours and my iron levels doubled almost instantly, serum iron was way over range, and my transferrin saturation shot up to 51% according to the tests done on our return. I couldn't breath and felt really weird and spacey and just had to return to sea level. I reckon this was a big clue to why my iron levels keep on spiking high, I believe I've been hypoxic, and lacking oxygen in the blood, and it was a sum of a number of things. I gave up smoking last year, and felt much better for it, but that couldn't be all of the story.Going to altitude just tipped the scale for me.
It all fell into place when last month I had a cyst the size of a golfball removed from my throat, centre front. I feel like I can breath and swallow now, and I sleep like a baby at night. This has been a huge fix for me. It must have been growing slowly for years, and slowly cutting off my airway. It moved around, at it was attached the the back of the tongue and could have been blocking my airways in my sleep. I believe my blood lacked oxygen, I started to get a type of secondary polycythemia (thick blood), and because I have a hemochromatosis gene, my body could respond by absorbing more iron and making more and more haemoglobin. No matter how many phlebs i did my haemoglobin never went under about 145!
Not having a spleen, just added to my problems (as it filters the blood, stores iron etc.).
The phlebotomies would have worked something like an oil change! And I needed them regularly to stay active.
I'm hoping I won't need them any more now that I've sorted out why I wasn't getting enough oxygen. My blood tests to be done in December will be very interesting!
And this all started with a Nuerologist telling me I probably had MS
It certainly links somewhat in with CCSVI, but from another angle.
Many causes for similar outcomes? MS is really complicated, what!
How are you keeping Merlyn? Haven't heard from you in a while
Re: Phlebotomy anyone?
Thanks for the update Bethr! Glad you're feeling better after getting rid of the cyst -- please continue to keep us lurkers updated =)
Re: Phlebotomy anyone?
Thanks Daniel, sometimes I wonder if anyone even reads this anymore - 
Well the update is that post-surgery my blood seems to be normal again.
Hemoglobin is down from 155 in Sept to 144!
HCT is also down from .47 to .43.
So I'm all oxygenated again!
I don't think I'll need to do phlebotomy's anymore.
My iron levels are completely normal/average too.
Lack of oxygen in the blood obviously does some horrible things, and can make
your body take in too much iron (especially if you have one or two or those hemochromatosis
genes).
The past five years have been hell. It just shows that you should research everything
yourself. The amount of Drs' and specialists I've been to!!! And not one picked up on the
throat obstruction causing my thick blood. I suppose things like Sleep Apnea could do similar things.
Cheers..............
Well the update is that post-surgery my blood seems to be normal again.
Hemoglobin is down from 155 in Sept to 144!
HCT is also down from .47 to .43.
So I'm all oxygenated again!
I don't think I'll need to do phlebotomy's anymore.
My iron levels are completely normal/average too.
Lack of oxygen in the blood obviously does some horrible things, and can make
your body take in too much iron (especially if you have one or two or those hemochromatosis
genes).
The past five years have been hell. It just shows that you should research everything
yourself. The amount of Drs' and specialists I've been to!!! And not one picked up on the
throat obstruction causing my thick blood. I suppose things like Sleep Apnea could do similar things.
Cheers..............
-
blossom
- Family Elder
- Posts: 1394
- Joined: Thu Dec 03, 2009 3:00 pm
- Location: south western pa.
- Contact:
Re: Phlebotomy anyone?
bethr, thanks for updating, and i think more than a few follow your updates and journey. quoting you--The amount of Drs' and specialists I've been to!!! And not one picked up on the
throat obstruction causing my thick blood---sadly there are many things i feel are being missed and overlooked. don't want to say every dr. but i'll just say we got too "specialized" and the patients as individuals are are not listened to and are ignored. but, if they can convince large groups of sick people that they got this so called ms or whatever they got a lot of people under their thumb-especially when meds are involved....so glad your journey and insistance panned out for you and you are doing well.
throat obstruction causing my thick blood---sadly there are many things i feel are being missed and overlooked. don't want to say every dr. but i'll just say we got too "specialized" and the patients as individuals are are not listened to and are ignored. but, if they can convince large groups of sick people that they got this so called ms or whatever they got a lot of people under their thumb-especially when meds are involved....so glad your journey and insistance panned out for you and you are doing well.
Re: Phlebotomy anyone?
Nice to hear from you Blossom.
The thing I can't get over is that the big cyst in my throat was right there in front of them.
Going up and down when I talked (my friends told me that recently, and that it was hard to watch
me and keep a straight face ) of course I was oblivious to all that.
It was really big and right in the middle at the front sticking out like a ........well, golfball!
I thought it was my adams apple - LOL.
I'm now finding that my frozen shoulders are coming free and I'm getting a much bigger range of movement. It's a bit painful but it's definitely coming back. I got partial muscle tears in both rotator cuffs while I was de-oxygenated and they never healed very well.
I think I've also figured out another weird event during my journey. It's way further back on this thread, but I sweated blue stuff and it marked all my T-shirts with this brilliant blue that didn't wash out. I thought it was the deodorant I was using and complained to the manufacturer. They took my shirts to Australia and tested them, and it was a body substance called Lipofuscin (some sort of nasty body waste product).
Well I found this today which made me come and update here: It might explain my muscles ripping for no apparent reason and not healing well either. Cop this!:
The thing I can't get over is that the big cyst in my throat was right there in front of them.
Going up and down when I talked (my friends told me that recently, and that it was hard to watch
me and keep a straight face
) of course I was oblivious to all that.It was really big and right in the middle at the front sticking out like a ........well, golfball!
I thought it was my adams apple - LOL.
I'm now finding that my frozen shoulders are coming free and I'm getting a much bigger range of movement. It's a bit painful but it's definitely coming back. I got partial muscle tears in both rotator cuffs while I was de-oxygenated and they never healed very well.
I think I've also figured out another weird event during my journey. It's way further back on this thread, but I sweated blue stuff and it marked all my T-shirts with this brilliant blue that didn't wash out. I thought it was the deodorant I was using and complained to the manufacturer. They took my shirts to Australia and tested them, and it was a body substance called Lipofuscin (some sort of nasty body waste product).
Well I found this today which made me come and update here: It might explain my muscles ripping for no apparent reason and not healing well either. Cop this!:
http://journals.cambridge.org/action/di ... aid=137817Response of skeletal muscle mitochondria to hypoxia
Hans Hoppeler a1, Michael Vogt a1, Ewald R. Weibel a1 and Martin Flück a1
a1 Anatomisches Institut, Bühlstrasse 26, CH-3000 Bern, Switzerland
Abstract
This review explores the current concepts relating the structural and functional modifications of skeletal muscle mitochondria to the molecular mechanisms activated when organisms are exposed to a hypoxic environment. In contrast to earlier assumptions it is now established that permanent or long-term exposure to severe environmental hypoxia decreases the mitochondrial content of muscle fibres. Oxidative muscle metabolism is shifted towards a higher reliance on carbohydrates as a fuel, and intramyocellular lipid substrate stores are reduced. Moreover, in muscle cells of mountaineers returning from the Himalayas, we find accumulations of lipofuscin, believed to be a mitochondrial degradation product. Low mitochondrial contents are also observed in high-altitude natives such as Sherpas. In these subjects high-altitude performance seems to be improved by better coupling between ATP demand and supply pathways as well as better metabolite homeostasis. The hypoxia-inducible factor 1 (HIF-1) has been identified as a master regulator for the expression of genes involved in the hypoxia response, such as genes coding for glucose transporters, glycolytic enzymes and vascular endothelial growth factor (VEGF). HIF-1 achieves this by binding to hypoxia response elements in the promoter regions of these genes, whereby the increase of HIF-1 in hypoxia is the consequence of a reduced degradation of its dominant subunit HIF-1[alpha]. A further mechanism that seems implicated in the hypoxia response of muscle mitochondria is related to the formation of reactive oxygen species (ROS) in mitochondria during oxidative phosphorylation. How exactly ROS interfere with HIF-1[alpha] as well as MAP kinase and other signalling pathways is debated. The current evidence suggests that mitochondria themselves could be important players in oxygen sensing. Experimental Physiology (2003) 88.1, 109-119.
-
blossom
- Family Elder
- Posts: 1394
- Joined: Thu Dec 03, 2009 3:00 pm
- Location: south western pa.
- Contact:
Re: Phlebotomy anyone?
bethr, the cyst would be a hard thing to even think they could miss. you had had mri's of the cervical?? but, even if you didn't you would have thought the description you gave of it would have caught a dr.'s eye. i feel dr.'s get too specialized and ignore sometimes what is right in front of them. it used to be a gen. practioner or pcp would check your eyes, ears, nose, throat, private parts whatever--now you gotta go to all separatly and each separate dr. won't pay attention to anything else.
just glad for you that it was finally found and removed. but, it's scarey to me. pretty negligent by the dr.'s along the line.
thanks for updating.
just glad for you that it was finally found and removed. but, it's scarey to me. pretty negligent by the dr.'s along the line.
thanks for updating.
-
lyndacarol
- Family Elder
- Posts: 3394
- Joined: Thu Dec 22, 2005 3:00 pm
- Contact:
Re: Phlebotomy anyone?
I am so glad you seem to have found the cause of your problem and are greatly improving.Bethr wrote:...
I'm now finding that my frozen shoulders are coming free and I'm getting a much bigger range of movement. It's a bit painful but it's definitely coming back. I got partial muscle tears in both rotator cuffs while I was de-oxygenated and they never healed very well.
I think I've also figured out another weird event during my journey. It's way further back on this thread, but I sweated blue stuff and it marked all my T-shirts with this brilliant blue that didn't wash out. I thought it was the deodorant I was using and complained to the manufacturer. They took my shirts to Australia and tested them, and it was a body substance called Lipofuscin (some sort of nasty body waste product).
Well I found this today which made me come and update here: It might explain my muscles ripping for no apparent reason and not healing well either. Cop this!:
http://journals.cambridge.org/action/di ... aid=137817Response of skeletal muscle mitochondria to hypoxia
Hans Hoppeler a1, Michael Vogt a1, Ewald R. Weibel a1 and Martin Flück a1
a1 Anatomisches Institut, Bühlstrasse 26, CH-3000 Bern, Switzerland
Abstract
This review explores the current concepts relating the structural and functional modifications of skeletal muscle mitochondria to the molecular mechanisms activated when organisms are exposed to a hypoxic environment. In contrast to earlier assumptions it is now established that permanent or long-term exposure to severe environmental hypoxia decreases the mitochondrial content of muscle fibres. Oxidative muscle metabolism is shifted towards a higher reliance on carbohydrates as a fuel, and intramyocellular lipid substrate stores are reduced. Moreover, in muscle cells of mountaineers returning from the Himalayas, we find accumulations of lipofuscin, believed to be a mitochondrial degradation product. Low mitochondrial contents are also observed in high-altitude natives such as Sherpas. In these subjects high-altitude performance seems to be improved by better coupling between ATP demand and supply pathways as well as better metabolite homeostasis. The hypoxia-inducible factor 1 (HIF-1) has been identified as a master regulator for the expression of genes involved in the hypoxia response, such as genes coding for glucose transporters, glycolytic enzymes and vascular endothelial growth factor (VEGF). HIF-1 achieves this by binding to hypoxia response elements in the promoter regions of these genes, whereby the increase of HIF-1 in hypoxia is the consequence of a reduced degradation of its dominant subunit HIF-1[alpha]. A further mechanism that seems implicated in the hypoxia response of muscle mitochondria is related to the formation of reactive oxygen species (ROS) in mitochondria during oxidative phosphorylation. How exactly ROS interfere with HIF-1[alpha] as well as MAP kinase and other signalling pathways is debated. The current evidence suggests that mitochondria themselves could be important players in oxygen sensing. Experimental Physiology (2003) 88.1, 109-119.
Thank you for posting this abstract; it may have application for many of us. All the best to you always.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
Re: Phlebotomy anyone?
Hey Bethr! wonder how you're doing? Still doing the phlebs? I'm still fighting for mine...Since I was last here my younger brother, sister and mother tested pos for the genes c282y/h63d...but not me...go figure...I'm hurting bad now, and so need a blood draw..If my test was really neg, they're sure missing something drastic! Porph maybe.....How are your brother and sis?
Re: Phlebotomy anyone?
Hey Katie45, hows it going? Wow, that's weird about your mum and siblings having the HH genes and not you ?? What's that about?
I'm pretty good now, after finding out why my body was saturated with iron because of a secondary cause. The hemochromatosis genes certainly influence things.
My iron is average now and ferritin has stayed under 100. No phlebs for over 1 year now as I just didn't feel I needed one. Pretty good/normal energy levels
and no more increase of that blotchy tan on my arms. The old tan is slightly faded out now. My sister still has the high ferritin and getting higher.
Her MS is stable though, so maybe it's a positive effect. I spoke to a respiratory expert and he said if my iron hadn't been so highly available, I'd have been short of breath for all those years. the high iron covered me, and enabled my body to make more haemoglobin, and more oxygen. My sisters ferritin was about 300 ug/ml last year. Drs. still taking no action. My brother's ferritin is up near 1000 now, and they are talking liver transplant!
Still no phlebs for him either, but we are still working on it. I ended up having 10 x pints taken before I found the cause was hypoxia.
Most of my bloods are normal now, although I do have high platelets currently. Phlebs won't help that one unfortunately - LOL
Cheers
Beth
I'm pretty good now, after finding out why my body was saturated with iron because of a secondary cause. The hemochromatosis genes certainly influence things.
My iron is average now and ferritin has stayed under 100. No phlebs for over 1 year now as I just didn't feel I needed one. Pretty good/normal energy levels
and no more increase of that blotchy tan on my arms. The old tan is slightly faded out now. My sister still has the high ferritin and getting higher.
Her MS is stable though, so maybe it's a positive effect. I spoke to a respiratory expert and he said if my iron hadn't been so highly available, I'd have been short of breath for all those years. the high iron covered me, and enabled my body to make more haemoglobin, and more oxygen. My sisters ferritin was about 300 ug/ml last year. Drs. still taking no action. My brother's ferritin is up near 1000 now, and they are talking liver transplant!
Still no phlebs for him either, but we are still working on it. I ended up having 10 x pints taken before I found the cause was hypoxia.
Most of my bloods are normal now, although I do have high platelets currently. Phlebs won't help that one unfortunately - LOL
Cheers
Beth