Phlebotomy anyone?

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

Postby Merlyn » Sat Sep 03, 2011 12:14 pm

Well, I got brave and took 10,000 IU yesterday and today. Yesterday, except for some increased feeling of urinary urgency, I was okay. So that's good. I have had trouble with vitamin D3 having a diuretic effect that, while not dangerous is just annoying.

I also noticed yesterday how much better I felt doing the hyperbaric. I had to go to the Queen Alexandra Hospital in Victoria because I need a replacement wheelchair, and they are custom making the back of the chair because I have developed scoliosis due to sitting all the time. Anyway, while there there was a lot of pulling on my shoulders etc. by the time I get out of there I was very very sore. One session in the chamber really really helped the pain. My OT, who has worked with me in the past was remarking on the decrease of spasticity. Before, when we would try to put me into certain positions when I was lying down, I would spaz right out and this time I was pretty good. She was really impressed with the difference, so perhaps it's like boiling a frog, you sort of makes such incremental improvements you don't notice is going on... anyway that's what I'm hoping. I will keep doing the hyperbarics...
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Postby blossom » Sat Sep 03, 2011 12:26 pm

merlyn, good to hear from you. thanks for keeping us posted. alhough they are small steps for the good right now at least it is positive and i feel many are watching and interested in your hyperbaric journey.
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Re: Phlebotomy anyone?

Postby Merlyn » Mon Sep 05, 2011 12:19 pm

Thanks blossom. I don't know how far this journey will take me, but at least it's viable for me. I mean I would certainly undergo CCSVI just to see what it might do for me, but being in Canada precludes local treatment at this stage. And I am really not fit for travel. It will be interesting to see what continues to happen, hopefully continuation of positive results. This whole condition is so mysterious, and I have started to take desiccated beef liver (supposedly organic from Argentina) to see whether I can make my hemoglobin smarten up... I would love to do another phlebotomy, such great results instantly! But the chamber is comfortable and safe... and who knows, they are using mild hyperbaric to treat so many different conditions, I might luck out and treat the underlying etiology accidentally! I am also going to try to get my levels of vitamin D3 up to 60-80, see if it makes a difference. I tested quite a few years ago and was just barely over the low reference range. And that was after sitting outside all summer in the Sun and becoming as dark as an acorn. I really thought my vitamin D levels would've been normal, but I was I think 32 (reference range 25-110)... or something like that. I think we need as many treatment modalities as we can find, because so many different people respond to different approaches.
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Re: Phlebotomy anyone?

Postby Merlyn » Wed Sep 07, 2011 12:39 pm

Vitamin D may reverse the effects of MS, trial finds
by doublevision1 , May 24, 2009 11:02PM
"Vitamin D may reverse the effects of MS, trial finds
Large doses of vitamin D may reduce the severity of the multiple sclerosis, says a new Canadian study.

24/05/2009 11:38:53 PM


In fact, among the participants in the University of Toronto test trial, 84 per cent of those taking high doses of vitamin D daily had a significant reduction in relapses.

Michel Cottier was one of those participants.

Every nine months or so, Cottier suddenly couldn't walk or move his arm because of an MS attack.

"You have to stop working. You can't help your wife with the children anymore.....simply you can't use your body as you used to," he explained.

Doctors at St. Michael's hospital in Toronto gave Cottier up to 40,000 International Units of vitamin D everyday over a 52-week period and found he suffered no side effects and that his condition was improving.

Now, Cottier hasn't relapsed in two and a half years.

What's more, scientists saw changes in the immune system cells of patients, suggesting the vitamin may be slowing the disease.

Dr. Paul O'Connor of MS society of Canada said the results are positive, but they are still preliminary.

"I think the results showing that vitamin D reduces attacks ... require confirmation in a properly designed study," he said. "To me it is extremely intriguing ... vitamin D is safe, it's cheap, and if we could show it helps patients with MS, it would be a huge step forward in making their lives easier."

The best results in the study were only observed in those who took the larger doses.

Still, O'Connor advises other MS patients not to take too much vitamin D, suggesting they only take 2,000 IU to 4,000 IU units a day.

He said researchers are planning to do more tests within the next two years to determine if in fact the treatment works.

Nevertheless, Cottier is still taking about 6,000 IU of vitamin D a day, to ensure that his MS attacks will not return.

MS is a disease of the brain that's caused when the immune system attacks protective myelin cells that sheath the brain and spinal cord.

People with MS can suffer from blurred vision, extreme fatigue, muscle stiffness, co-ordination difficulties and neurological damage.

Recent research has found that proteins activated by vitamin D attach to a certain type of DNA, called DRB1-1501, which is believed to cause the disease.

The U of T study's hypothesis is that vitamin D reduces inflammation and stops the immune system from attacking its own cells, thereby ensuring the gene functions properly in the body.

About 2.5 million people have MS around the world, but it is most common in countries north of the equator where inhabitants get less sun light exposure.

Researchers suggest that people in countries such as, Canada, take a vitamin D supplement, during the winter months to prevent MS.

With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip"



http:// news.sympatico.msn.ca /Home/Home.htm
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Re: Phlebotomy anyone?

Postby Bethr » Sun Sep 11, 2011 2:18 pm

Hi everyone, just a quick update on how the phlebotomy is going.
I've now had 3 litres of blood withdrawn over a 20 month period,
plus I am still fully menstruating. This equates to close to 3.5 - 4 litres
of blood lost over that time span.
I am feeling very well! My iron stores/ferritin/transferrin saturation are now normal/average and
my hemoglobin has finally gone down to 140 :-D which is normal/average also.
No more brain events, and only mild fatigue when I'm due for another phlebotomy.
(Currently every 3 months, but i may extend that out to 4 monthly and see how I feel).

From here I'll be looking to maintain these levels, and just tweak my nutrition.
I still eat meat, but have cut it down by about half. I must admit I was a big
meat eater once upon a time. I avoid iron fortified cereals, and thankfully flour
in our country is not iron fortified (legislatively).

My sister with MS has been unable to try this treatment due to her diagnosis of MS!
We saw her neurologist a few weeks ago, and he decided it was not in HIS interests
to try phlebotomy on her, due to the flack he may attract. ie: unproven therapy,
even though my sister also carries the C282Y iron overload gene, and our similar symptoms and
higher than normal iron levels.

He compared phlebotomy to hypabaric oxygen treatment and CCSVI - OMG!!!!!!!
He stated that CCSVI has now been disproved, to which I said that I thought the jury was not yet out!!

We have a long way to go......................
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Re: Phlebotomy anyone?

Postby Tinkerbell » Sun Sep 11, 2011 7:59 pm

Hi everyone,
I was doing some research and came across this website and was going to post it on TIMS and came across the very thing that this was about so I thought I would put it here... check it out!!!


http://www.ironoverload.org/
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Re: Phlebotomy anyone?

Postby NHE » Mon Sep 12, 2011 1:55 am

Bethr wrote:My sister with MS has been unable to try this treatment due to her diagnosis of MS!
We saw her neurologist a few weeks ago, and he decided it was not in HIS interests to try phlebotomy on her, due to the flack he may attract. ie: unproven therapy, even though my sister also carries the C282Y iron overload gene, and our similar symptoms and higher than normal iron levels.

He compared phlebotomy to hypabaric oxygen treatment and CCSVI - OMG!!!!!!!
He stated that CCSVI has now been disproved, to which I said that I thought the jury was not yet out!!

We have a long way to go......................


Does she have a primary care doctor who is willing to test her iron levels? If they turned out to be high, then I think that the neurologist's paranoia would be a non-issue!

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Re: Phlebotomy anyone?

Postby Bethr » Mon Sep 12, 2011 12:02 pm

She of has had her iron tested many times. It is just over the top range, and has stayed there over time. This is not classic iron overload, therefore no standard treatment will be forthcoming for excess iron.
There is plenty of new research showing that iron is toxic in excess. We are definitely pushing the boundaries of current thinking in requesting phlebotomy.


Iron behaving badly - Douglas Kell 2008[url]

http://arxiv.org/ftp/arxiv/papers/0808/0808.1371.pdf[/url]

Very long, but a great wrap up of hundreds of studies by Prof Kell.
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Re: Phlebotomy anyone?

Postby Merlyn » Sat Sep 17, 2011 12:30 pm

Bethr-I am so sorry that they are hassling your sister when phlebotomy could very well trigger improvements. The whole medical system (IMHO) has been hijacked by the pharmaceutical industry. And then we have to fight tooth and nail to try anything that might not be strictly drug oriented. I mean I could not believe that in Canada oxygen is a prescription.

I am experimenting with high levels of vitamin D3 and it seems to be helping movement/mobility... with the caveat that I am also doing the hyperbaric chamber so trying to differentiate what is doing what is a bit of a guess. I have been having in the last couple of years a lot of Parkinson type start/stop movement disorder, and I found this very interesting:

Energy and Mood
Vitamin D affects the expression of many enzymes in the body; tyrosine hydroxylase stands out as one example. This enzyme converts tyrosine, an amino acid found naturally in the diet, into dopamine. The latter functions as an important neurotransmitter and has been called the brain's feel-good chemical. If vitamin D levels drop, so too does the production of dopamine. As well as improving mood, the neurotransmitters also help maintain an active metabolic rate and healthy hormonal balance.


Read more: http://www.livestrong.com/article/38354 ... z1Y8vWOxiL

I am on 40,000 IU at the present time, and I'm going to try 50,000 IU for a while.


http://www.youtube.com/watch?v=_PYsXQ16Ztg

I am not worried about the toxicity factor. I will probably test sometime in January, but I plan to continue high-dose for some time unless it starts to make me feel terrible in some sense. I tested years ago after sitting in the sun all summer and was still low. The fact that vitamin D3 raises glutathione in my book makes it extraordinary and probably accounts for the fact that it is affecting so many conditions.

I continue to do the hyperbaric chamber as often as is logistically possible. One thing I can say for certain is that it is an amazing treatment for pain. I have been having many many appointments at the Queen Alexandra Hospital in order to tailor make a backing for a "new" wheelchair (the chair is about two years old, couldn't afford a new one) and there's been a lot of pushing and shoving and poking when repositioning. The OT is not the most gentle woman and I come away from there aching and sore. So I went into the chamber for an hour and a half yesterday and it was incredible the way the pain in my shoulders lessened. I can actually feel it leave by degrees while I was in there. After 90 minutes it was pretty much gone. Also the spasticity reduces after about 40 minutes or so. I can feel the release, it's like turning a key. Nothing happens for a while, and then it kicks in, this release and it's just a great relief. So I guess my attitude these days is that even if it does not stop progression, it sure increases my quality of life by reducing spasticity and pain and neuropathy... I have done about 70 hours in the chamber and my left hand is definitely in better shape. My feet are still purple however, that does not seem to maintain. When I first get out of the chamber both my hands and feet are much better color, close to pink, but it does not last 24 hours, perhaps 10 or so. I find that vitamin D3 acts as a diuretic, and the pressure from the hyperbaric chamber also causes me to pee, which is good because I no longer even think about having to get up at night. I am emptied out!
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Re: Phlebotomy anyone?

Postby daniel » Sat Sep 17, 2011 6:56 pm

Please make sure to get your vitamin D levels tested every three months or so. It's not good to keep taking 40k IU daily in the long-run. You want to get your blood level ( 25(OH)D ) in the 50-80 range and then supplement with 5000iu daily to maintain that level.

Studies indicate that for proper health, serum vitamin D levels should be a minimum of 50 ng/mL (125 nmol/L), with optimal levels falling between 50-80 ng/mL (125-200 nmol/L). These values apply to both children and adults.


-- http://www.vitamindcouncil.org/about-vi ... deficient/

Having too high of a vitamin D level can be just as bad as too little
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Re: Phlebotomy anyone?

Postby Merlyn » Mon Sep 26, 2011 12:34 pm

Well, along with the vitamin D3, I think I will try some pregnenolone again. I do tolerate pregnenolone, it just didn't seem to do much, but maybe in conjunction with the vitamin D3 it may work better. I am a big fan of the work of Raymond Peat, especially when you read his work on MS and blood viscosity etc.


http://www.dailymail.co.uk/health/artic ... rosis.html


THYROID AND MULTIPLE SCLEROSIS
Generally, MS can be traced to environmental poisoning, such as radiation or
heavy metal exposure, such as lead or mercury. Here is how one expert describes
the process: "Cells called "oligodendrocytes" are responsible for myelinating
nerve fibers and are steroid-forming cells. Specifically, they produce
pregnenolone. In MS, these oligodendrocytes appear to stop functioning. The
clustering of oligodendrocytes around deteriorating nerve cells may be an
attempt to provide pregnenolone to the injured cells." --- Ray Peat, Ph. D.
Sometimes MS patients suffer from undiagnosed hypothyroidism, especially if they
aren't overweight or seriously disabled. MS symptoms sometimes disappear under
proper thyroid therapy.
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Re: Phlebotomy anyone?

Postby Merlyn » Mon Sep 26, 2011 12:47 pm

http://raypeat.com/articles/articles/th ... ones.shtml


Pregnenolone, which is the raw material for producing many of the hormones of stress and adaptation, was known as early as 1934, but for several years it was considered to be an "inert" substance. A reason for this belief is that it was first tested on healthy young animals. Since these animals were already producing large amounts of pregnenolone (in the brain, adrenal glands, and gonads), additional pregnenolone had no effect.

In the 1940s, pregnenolone was tested in people who were sick or under stress, and it was found to have a wide range of beneficial actions, but the drug industry never had much interest in it. Its very generality made it seem unlike a drug, and its natural occurrence made it impossible to patent. Thus, many synthetic variants, each with a more specialized action and some serious side effects, came to be patented and promoted for use in treating specific conditions. The drug companies created an atmosphere in which many people felt that each disease should have a drug, and each drug, a disease. The side effects of some of those synthetic hormones were so awful that many people came to fear them. For example, synthetic varieties of "cortisone" can destroy immunity, and can cause osteoporosis, diabetes, and rapid aging, with loss of pigment in the skin and hair, and extreme thinning of the skin.

Natural pregnenolone is present in young people of both sexes at a very high concentration, and one reason for the large amount produced in youth is that it is one of our basic defenses against the harmful side effects that an imbalance of even our natural hormones can produce. In excess, natural cortisone or estrogen can be dangerous, but when there is an abundance of pregnenolone, their side effects are prevented or minimized.

In a healthy young person or animal, taking even a large dose of pregnenolone has no hormone-like or drug-like action at all. It is unique in this way. But if the animal or person is under stress, and producing more cortisone than usual, taking pregnenolone causes the cortisone to come down to the normal level. After the age of 40 or 45, it seems that everyone lives in a state of continuous "stress," just as a normal part of aging. This coincides with the body's decreased ability to produce an abundance of pregnenolone.
When aging rats are given a supplement of pregnenolone, it immediately improves their memory and general performance. Human studies, as early as the 1940s, have also demonstrated improved performance of ordinary tasks. It is now known that pregnenolone is one of the major hormones in the brain. It is produced by certain brain cells, as well as being absorbed into the brain from the blood. It protects brain cells from injury caused by fatigue, and an adequate amount has a calming effect on the emotions, which is part of the reason that it protects us from the stress response that leads to an excessive production of cortisone. People feel a mood of resilience and an ability to confront challenges.

Many people have noticed that pregnenolone has a "face-lifting" action. This effect seems to be produced by improved circulation to the skin, and by an actual contraction of some muscle-like cells in the skin. A similar effect can improve joint mobility in arthritis, tissue elasticity in the lungs, and even eyesight. Many studies have shown it to be protective of "fibrous tissues" in general, and in this connection it was proven to prevent the tumors that can be caused by estrogen.

Pregnenolone is largely converted into two other "youth-associated" protective hormones, progesterone and DHEA. At the age of 30, both men and women produce roughly 30 to 50 mg. of pregnenolone daily. When taken orally, even in the powdered form, it is absorbed fairly well. One dose of approximately 300 mg (the size of an aspirin tablet) keeps acting for about a week, as absorption continues along the intestine, and as it is "recycled" in the body. Part of this long lasting effect is because it improves the body's ability to produce its own pregnenolone. It tends to improve function of the thyroid and other glands, and this "normalizing" effect on the other glands helps to account for its wide range of beneficial effects.
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Re: Phlebotomy anyone?

Postby Merlyn » Thu Oct 06, 2011 12:08 pm

Trying to conclude whether this is helping me or not is kind of difficult. MS is so weird in its day to day variability that it is hard for me to determine what effect this is producing. I am finding that longer sessions seem to be more effective, meaning that spending 85-90 minutes in the chamber seems to be more beneficial than 60-70 minutes, but that's also a big time commitment each day. And when I spend 85-90 minutes in the chamber, my God do I have to pee when I get out. The pressure of the chamber is known to reduce edema and I definitely say that works. My feet don't look normal when I get out, they are still purplish, but the swelling is greatly reduced. For sure, I no longer worry about having to get up at night to pee, although truthfully that problem has been greatly reduced for quite a while due to taking T3 thyroid medication. But before the chamber, I would have occasional mornings where I was not able to sleep in too late due to having morning urgency. Since the chamber, no problem sleeping in.

Slowly but surely I do think my left arm/my left hand is responding better. But the caveat is that it is not lasting 24 hours. I generally go into the chamber around 3 PM and exit around 4:30 PM. When I get out I am less spastic and that does seem to last until I go to bed. I think for the first few hours of sleep I am less spastic, but by 9 AM I feel quite a bit of spasticity. Has that reduced any? Hard to tell. If there has been a total reduction in spasticity, it would be minor and hard to detect. On the other hand, to give an example... when I am getting dressed for bed, it has been hard to bend my left arm so that my hand moves towards my chin and then you can pull the shirt sleep over it... if you know what I mean. It's been pretty easy to bend my left arm, and a few times I have been able to lift it off the wheelchair arm. And my left fingers do seem more responsive. Also I've noticed that I've been able to feed myself an entire dinner without losing it, meaning that I've been conking out halfway through dinner, that just lifting the fork time and time again has tired me out. I am asking for assistance less frequently, definitely less frequently. The neuropathy in my feet has decreased I believe for the most part, but they're the problem is sometimes that deep numbness reappears and then I don't know that the hyperbaric is causing the variation...

I am approaching the 80 hour mark and according to some of the literature on mild hyperbaric treatment for long-standing MS this is the timeline where one could start seeing more lasting improvement. Hopefully...

With primary progressive MS I simply don't know what I would be like if I didn't do something. Would I be worse off now in just these few months? Possibly so because my deterioration moved into overdrive. Would my joint pain be even worse? Sometimes in the chamber I can feel pain seep away and I have a few hours of relief, but it generally does come back, but then again since I am using a sling etc., so does the stresses on the joint. In other words, just doing transfers ends up re-stressing the joints. So expecting permanent relief from joint pain is probably unrealistic when the stresses keep repeating daily.

Perhaps now that I have reached the 80 hour benchmark I will be seeing other kinds of responses. I would like to try sleeping in the chamber, but I doubt it would work due to the fact I would probably have to get out of there to pee!
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Re: Phlebotomy anyone?

Postby blossom » Fri Oct 07, 2011 11:46 am

thank uou so much for your updates. the best to you.
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Re: Phlebotomy anyone?

Postby Merlyn » Sat Oct 22, 2011 1:01 pm

http://www.neogenis.com/

I know absolutely nothing about this product, my sister sent me the website, but then said if it were her she would just drink beet juice. Which I am considering... as I really don't want to be swallowing more pills and these are very expensive.

I think I may finally get my sleep study done next week, the company phoned. I gather if you do have obstructive sleep apnea, you experience decreased nitric oxide...

http://www.ncbi.nlm.nih.gov/pubmed/11112132

So that will be interesting to be tested. A couple of times I've almost fallen asleep in the chamber, and I wake up snorting, like my throat is collapsed. It is not something I really notice at night, so it has surprised me. Decreased nitric oxide makes you prone to vascular problems. I do know that when I get out of that chamber, my mobility is much much improved for 8-10 hours, but it goes away gradually. I am at my stiffest/worst first thing in the morning (is that the sleeping/sleep apnea?) I hope to soon find out whether I do have OSA... and of course getting rid of the sugar... I do not have high blood pressure, but sugar really really affects me personally...

1. High Blood Pressure - Normal nitric oxide levels keep blood vessels healthy and open. Too much sugar in your diet decreases nitric oxide levels, causing blood vessels to become narrow, which causes high blood pressure and an increased risk for cardiac disease.






http://www.hyperbaricliving.com/hyperbaric_therapy.html


Beginning in the 1990s, Dr. Harch pioneered Hyperbaric Oxygen Therapy (HBOT) to treat neurological conditions including stroke, traumatic brain injury, carbon monoxide poisoning, cerebral palsy, cardiac arrest, autism and others.
A key observation is that HBOT stimulates nitric oxide production, a vasodilator to open up the blood vessels, in the body – similar to how Viagra helps enhance sexual performance
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