it's either a phleb or I'm off to my sleepy unproductive life again. I'll get the leaches out if necessary! (Many thanks to our brave guinea pig!)Phlebotomy anyone?
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ForeverSpring
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The doctor mentioned the possibility of sending me to a hematologist, but I would have to drive over 100 miles each way through high mountain passes through snow and ice, so I was not very enthusiastic about that idea! I asked him, What kinds of tests would a hematologist do that could not be done here? He said, "I don't know. That's why I would send you there!"
I hope you will be able to work something out with the hematologist.
ForeverSpring
I hope you will be able to work something out with the hematologist.
ForeverSpring
Well, I'm back! I even phoned the hospital this morning to make sure that the phlebotomy room was wheelchair accessible! Paranoid, I know. But I was so afraid that something would prevent me from going all the way.
They use a big needle! I mean it is large! Nothing like the butterfly needles that they use at the lab to take blood, it is a large variety to make that blood flow faster. I always like asking questions of the technicians... in this case an R.N. She said they do phlebotomies in the hospital because some people faint or have episodes of low blood sugar. She said that if people have very thick blood it takes about 30 minutes to get out 500 mL, but the average person it takes only 10. Like a dummy, I forgot to time it, but I think it was around 15 or 20, not 10. But if I do it again, I will make sure to measure the time it takes. I did not have any adverse reaction to the immediate removal, have not noticed any lightheadedness or anything like that. They gave me a large cup of apple juice to drink immediately following, that's probably why cost $400 LOL, anything in the hospital is big-time money.
The nurse asked me how often I would be doing it, and I said it was just investigative and I explained about my theory of iron overloading considering the saturation level... she did not know the markers off the top of her head, said she would look it up on the computer. But she just basically said, get a referral to a hematologist because they run different tests and can monitor things if I wanted to do more. She was all for it, because she said in the medical system you have to be your own advocate, and if I thought this would help, to pursue it. I think what I will do is ask my GP for the referral... kind of lie a bit and say the nurse recommended it! She took my blood pressure at the start, it was 117/70 and then again at the end of the phlebotomy and it was 127/75. So I don't think I came close to any kind of fainting episode by a long shot, which is good because I was sitting in the wheelchair, my manual, which does not tilt back. Usually they have you reclining on a bed, or sitting in the phlebotomy chair. But my body behaved and it wasn't any kind of problem. So I'm hoping over the next couple three days I will notice something positive... I'm not even tired.
They use a big needle! I mean it is large! Nothing like the butterfly needles that they use at the lab to take blood, it is a large variety to make that blood flow faster. I always like asking questions of the technicians... in this case an R.N. She said they do phlebotomies in the hospital because some people faint or have episodes of low blood sugar. She said that if people have very thick blood it takes about 30 minutes to get out 500 mL, but the average person it takes only 10. Like a dummy, I forgot to time it, but I think it was around 15 or 20, not 10. But if I do it again, I will make sure to measure the time it takes. I did not have any adverse reaction to the immediate removal, have not noticed any lightheadedness or anything like that. They gave me a large cup of apple juice to drink immediately following, that's probably why cost $400 LOL, anything in the hospital is big-time money.
The nurse asked me how often I would be doing it, and I said it was just investigative and I explained about my theory of iron overloading considering the saturation level... she did not know the markers off the top of her head, said she would look it up on the computer. But she just basically said, get a referral to a hematologist because they run different tests and can monitor things if I wanted to do more. She was all for it, because she said in the medical system you have to be your own advocate, and if I thought this would help, to pursue it. I think what I will do is ask my GP for the referral... kind of lie a bit and say the nurse recommended it! She took my blood pressure at the start, it was 117/70 and then again at the end of the phlebotomy and it was 127/75. So I don't think I came close to any kind of fainting episode by a long shot, which is good because I was sitting in the wheelchair, my manual, which does not tilt back. Usually they have you reclining on a bed, or sitting in the phlebotomy chair. But my body behaved and it wasn't any kind of problem. So I'm hoping over the next couple three days I will notice something positive... I'm not even tired.
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ForeverSpring
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I would not think so! Will it be more accessible when it warms up?ForeverSpring wrote:The doctor mentioned the possibility of sending me to a hematologist, but I would have to drive over 100 miles each way through high mountain passes through snow and ice, so I was not very enthusiastic about that idea!
Personally I'd have considered getting leeches but the reports of blood and scabies have scared me off! Instead I gathered information on blood donating and can make it to a place on Monday...but I'm a wimp, I'm scared! I've never donated blood before and have trouble getting past the thought that I'll feel more fatigued (and I'm already chronically fatigued) or dizzier afterwards. Still the rationale of why this might help makes sense and it's the only way to test the possibility that I might feel great afterwards.
I've tried inclined bed therapy and am shocked that I'm suddenly dreaming again and feeling better in the morning (when I haven't dreamed or woken up feeling good in years)...so on to the next new idea here with the blood-letting.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Holy cow Batman, we aced it! I think I better give you of some background on how many terrible symptoms I deal with every day... I am confined to a wheelchair, my spasticity has increased to the point where I was afraid that I would be in a nursing home within the year. My feet are Barney feet, generally incredibly purple unless I have been lying down all night and in the morning they tend to be pinkish, although sometimes the toes remain red. Sleeping has been a nightmare, because I spaz out all night long, some nights are thrashing nights and I get no sleep because my legs are just kicking. I do not tolerate pharmaceutical antispasmodic's, I have tried them all. I get paradoxical spasticity from baclofen, the more I take, the stiffer I get. My hand function has been declining steadily, lost the ability to type many years ago. I had thyroid symptoms for many years, but could not find the right treatment... until I found an environmental illness Dr. who tested my thyroid properly and found I had no T3. The fatigue was overwhelming prior to treatment, and even then it took many years of experimentation to find the right treatment... I am on time released liothyronine to the tune of 110 mcg a day... this is the active form of the thyroid hormone, and it abolished the fatigue once I got onto the right dose. I found I had to shut my own thyroid down, because I have no tolerance whatsoever for any kind of T4, like Synthroid, and I think it is because any amount of T4 suppresses the pituitary... my energy is very good, it's very steady, and it was one of the major keys to restoring my quality of life on one level... I mean you need energy to read, go out and about etc... and I owe with great deal of gratitude to my naturopathic physician for treating me on the basis of how I feel rather than laboratory reference ranges... which I do not fit into. T3 runs everything, cellular respiration, digestive system, sleep cycles, metabolism... you name it, T3 is involved in regulating it.
But even with thyroid treatment, the progression has continued... luckily I have never had optic neuritis so have been able to read and continue searching. I have a friend in the adult care home that always has double vision, and I am grateful that my eyesight has allowed me to continue reading forum such as this, or reading books like The Bronze Killer...
All of this preamble is to clarify that I have been very debilitated/impacted by "MS" and have reached a point of utter despair because it is painful! Muscle spasms are painful! Spasticity is painful! Not sleeping is devastating... not walking is torture, watching life pass you by, being sidelined from life. It is just depressing, no two ways about it, it is a living nightmare...
One phlebotomy and I already know that this is the answer! I use a ceiling lift/sling and getting out of bed in the morning has been making me cry out, I have been going into full body extensions etc., my legs will not been until my husband wrestles with them and bends them. I am not claiming that it is gone, but if I had to put a number on it, I would say it is a 15-20% reduction... I can unfold my left hand, right hand is working maybe 20% better... I just feel all around better! So this is it for me, I have figured out what will cure me... and I mean cure, I do not mean prophylactic Band-Aids! The problem will be in finding that Dr. that will be open to this treatment... which is so stupid because it is easy enough to monitor... when I was in the clinic yesterday, I asked the RN what other conditions would make the blood thick besides iron and she said polycythemia... too many red blood cells. This is how they treat spasticity of this condition, with phlebotomy... I think maybe just the reduction for a short time in the thickness of the blood via phlebotomy may explain my quick reaction to the reduction in spasticity! Whatever the real reason is, I will take it!
I am going to set up an appointment with my doctor today for next week, explain to him my reaction, see if he will authorize more phlebotomy treatment and if not ask for referral to a hematologist... if he does not agree to this, then of course I am going to have to figure out a way to self treat, because there is light, there is finally light at the end of the tunnel.
It does seem to be a broad range of iron metabolism abnormalities out there, I am feeling grateful that I am fairly easy to figure out. I don't know that this is going to be a broad panacea, but I am sure there is a fairly large subset of us that will fall into this type of treatment modality. Transferrin saturation that is too high, ferritin that is too high for some, high iron in the blood... for some of the other anemias, unless it is iron loading anemia, this won't work I don't believe... but there is going to be a huge number of people with MS that can be treated this way... and please please please understand that varcies are due to abnormal iron metabolism and can be fixed with phlebotomy! We are not crazy, we have found the root cause of our disability, and great great great news is that it's easy to treat!
But even with thyroid treatment, the progression has continued... luckily I have never had optic neuritis so have been able to read and continue searching. I have a friend in the adult care home that always has double vision, and I am grateful that my eyesight has allowed me to continue reading forum such as this, or reading books like The Bronze Killer...
All of this preamble is to clarify that I have been very debilitated/impacted by "MS" and have reached a point of utter despair because it is painful! Muscle spasms are painful! Spasticity is painful! Not sleeping is devastating... not walking is torture, watching life pass you by, being sidelined from life. It is just depressing, no two ways about it, it is a living nightmare...
One phlebotomy and I already know that this is the answer! I use a ceiling lift/sling and getting out of bed in the morning has been making me cry out, I have been going into full body extensions etc., my legs will not been until my husband wrestles with them and bends them. I am not claiming that it is gone, but if I had to put a number on it, I would say it is a 15-20% reduction... I can unfold my left hand, right hand is working maybe 20% better... I just feel all around better! So this is it for me, I have figured out what will cure me... and I mean cure, I do not mean prophylactic Band-Aids! The problem will be in finding that Dr. that will be open to this treatment... which is so stupid because it is easy enough to monitor... when I was in the clinic yesterday, I asked the RN what other conditions would make the blood thick besides iron and she said polycythemia... too many red blood cells. This is how they treat spasticity of this condition, with phlebotomy... I think maybe just the reduction for a short time in the thickness of the blood via phlebotomy may explain my quick reaction to the reduction in spasticity! Whatever the real reason is, I will take it!
I am going to set up an appointment with my doctor today for next week, explain to him my reaction, see if he will authorize more phlebotomy treatment and if not ask for referral to a hematologist... if he does not agree to this, then of course I am going to have to figure out a way to self treat, because there is light, there is finally light at the end of the tunnel.
It does seem to be a broad range of iron metabolism abnormalities out there, I am feeling grateful that I am fairly easy to figure out. I don't know that this is going to be a broad panacea, but I am sure there is a fairly large subset of us that will fall into this type of treatment modality. Transferrin saturation that is too high, ferritin that is too high for some, high iron in the blood... for some of the other anemias, unless it is iron loading anemia, this won't work I don't believe... but there is going to be a huge number of people with MS that can be treated this way... and please please please understand that varcies are due to abnormal iron metabolism and can be fixed with phlebotomy! We are not crazy, we have found the root cause of our disability, and great great great news is that it's easy to treat!
http://en.wikipedia.org/wiki/Varices
Varices in general refers to distended veins. It derives from the Latin word for twisted, "varix".[1]
Types of varices include:
Varicose veins of lower extremities
Gastrointestinal varices
Esophageal varices
Gastric varices
Intestinal varices
Scrotal varices (varicocele)
Vulvar varices
Even if I do have these twisted veins in my neck or clogged aczygous, chances are good that it will reverse if I can get enough phlebotomy done.http://cat.inist.fr/?aModele=afficheN&cpsidt=3700232
At diagnosis a similar frequency of varices was observed in patients with GH (25%) and in PNC (24%), as well as of portal vein abnormalities and spleen enlargement. During the follow-up period, all but two of the patients with GH were treated by phlebotomy and depleted of excess iron. After a mean of 6 ± 4.3 (SD) years of observations (range, 2 to 10 years), varices were improved or completely reversed in 26% of patients with cirrhosis and GH but in only 5% of those with PNC (P <.01).
Cece-I think I understand your hesitation, I have never been particularly bothered by blood draws at the clinics and laboratories, and the size of the needle did take me back, I will not deny that. But I just keep thinking of all the people that could possibly prevent disability by such a simple method. Years ago, if I had known how to prevent my present debilitation, I would've went for it! I just didn't know what to do, and I tried everything. I am one of those people that spent 10 years searching for the answer, running around to different doctors, going on special diets, taking garbage bags full of supplements, I even bought an infrared sauna and sat in it everyday for a year, even though I was massively heat intolerant... nothing worked, and now I am in my present condition.
I think if you are anemic, they will turn you away from blood donation. And frankly, if it were possible, before doing this I would have a diary panel done... I am convinced that the fatigue of MS is very often thyroid related, and my guess is that iron can nuke the thyroid. That is going to be one of the problems, I don't know that everyone's going to be able to do phlebotomy unless there is a couple other things done first. Thyroid is so critical, you will not digest your food properly unless you have enough T3... T3 controls heartbeat, mitochondrial energy etc... have you had a proper thyroid panel done ever? Do you have insurance to get one? Doctors don't like to deal with T3, they are misguided thinking that they will give people heart attacks, and this could possibly be true unless they introduce the T-3 very slowly. I had to go up one microgram at a time when I first started... but it saved my life. As a consequence of all of my thyroid problems, I ended up knowing a lot about it, and I would thoroughly urge you to get both the iron panel done and the thyroid... 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! I would hate to see anybody worsen with this treatment... and I can see that it would be possible unless they do a couple tests first.
I think if you are anemic, they will turn you away from blood donation. And frankly, if it were possible, before doing this I would have a diary panel done... I am convinced that the fatigue of MS is very often thyroid related, and my guess is that iron can nuke the thyroid. That is going to be one of the problems, I don't know that everyone's going to be able to do phlebotomy unless there is a couple other things done first. Thyroid is so critical, you will not digest your food properly unless you have enough T3... T3 controls heartbeat, mitochondrial energy etc... have you had a proper thyroid panel done ever? Do you have insurance to get one? Doctors don't like to deal with T3, they are misguided thinking that they will give people heart attacks, and this could possibly be true unless they introduce the T-3 very slowly. I had to go up one microgram at a time when I first started... but it saved my life. As a consequence of all of my thyroid problems, I ended up knowing a lot about it, and I would thoroughly urge you to get both the iron panel done and the thyroid... 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! I would hate to see anybody worsen with this treatment... and I can see that it would be possible unless they do a couple tests first.
Correction on the diary panel
That should've read thyroid.
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ForeverSpring
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How exciting for you, Merlyn! What a wonderful reward for all your perseverance! 
As for me, I experienced a very little, mild heart fluttering late yesterday, then it went away. Since I do not have the kind of disability that you have, and am taking LDN, I am not surprised to feel about the same as I did before the phlebotomy. I am more focused on just ridding my body of the excess iron.
Abdominal swelling and shortness of breath began the day before the phlebotomy, so this is the third day for that. When it has appeared in the past, I have always brushed it off, but am now looking at it with different eyes.
Keep pressing forward, woman!
ForeverSpring
As for me, I experienced a very little, mild heart fluttering late yesterday, then it went away. Since I do not have the kind of disability that you have, and am taking LDN, I am not surprised to feel about the same as I did before the phlebotomy. I am more focused on just ridding my body of the excess iron.
Abdominal swelling and shortness of breath began the day before the phlebotomy, so this is the third day for that. When it has appeared in the past, I have always brushed it off, but am now looking at it with different eyes.
Keep pressing forward, woman!
ForeverSpring