Phlebotomy anyone?

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

Postby Merlyn » Mon Mar 07, 2011 1:01 pm

Bethr-keep us updated, it will be interesting to see what happens with your sister. I am personally so disappointed that I cannot continue my bloodletting as it was the only thing that ever influenced symptoms in a positive way/dramatic way. Good luck!
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Postby Bethr » Mon Mar 07, 2011 2:29 pm

The news is good, she had her first bloodletting yesterday.
A lesser amount than would be usual. but she is going back next week for another. I think I would have preferred to have smaller amounts taken too.
The effect was quite extreme on my first one, I was far too "high" and I did have some new symptoms, heart trembl;es and jerky arm movements on one day, which subsided from the 2nd phleb onwards. Maybe just too much at once? It's a bit of a shock to the body. one whole pint. But it does get easier as the sludge clears with each phleb so to speak. I liken it to an oil change. :lol:
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Postby Bethr » Mon Mar 07, 2011 5:04 pm

DIAGNOSTIC NEURORADIOLOGY

The basal ganglia in haemochromatosis
D. Berg, U. Hoggenmüller, E. Hofmann, R. Fischer, M. Kraus, M. Scheurlen and G. Becker

Abstract
Haemochromatosis is characterised by deposition of iron-containing pigment in various organs, but little is known about possible deposition in the brain and its clinical impact. We therefore investigated 14 patients with hereditary haemochromatosis with MRI, CT and transcranial ultrasound (TCS) and examined them neurologically. In six of the patients dense lesions were found within the lentiform nucleus on CT, all of whom displayed hyperechogenic lesions in the same area on TCS, as did one other patient. In these patients the relative signal intensities of the lentiform nucleus measured by MRI relaxometry were higher. No patient had clinical signs of basal ganglia disorders.

http://www.springerlink.com/content/ekr5v2xk7xyef8xm/


Found this very interesting as the lesion I have is in the Basal Ganglia.
Wonder where my sisters lesions are?

She's good to go so far today, and she had a good nights sleep.
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Postby Merlyn » Wed Mar 09, 2011 2:02 pm

Well, I did manage to do 1.15 hours of hyperbaric oxygen therapy yesterday at a pressure of 1.5. This is the milder depth that is recommended for MS (instead of 2.0). Getting into the chamber was not too difficult, although it did take preparation. The hyperbaric center in Victoria is fairly roomy, not in the chamber room itself, but they have a lobby/reception area etc. so it is not impossible to use a Hoyer lift. Which is what I used to transfer from manual wheelchair to the bench that slides out of the chamber. Humphrey, the technician, was very helpful and considerate. He had never seen a Hoyer lift and thought it was just the ticket. I used a "quick fit" sling and was able to transfer to the bench without any kind of stress. The seat itself has no arms, it is just a seat, not like an armchair. So we put a strap around my middle to make sure that should I teeter, I would be safe.

Originally, I was accompanied inside the chamber with my care-aide, but she found the pressure made her ears hurt, so she exited. I too found it uncomfortable, but not enough to deter me from trying the therapy. It's kind of boring in there, although you can look through the porthole of the chamber at a TV screen where Humphrey has a DVD playing of nature scenes, so there are beautiful images to watch. But it is not accompanied by sound. Inside the chamber is pretty well insulated from the outside noise.

Personally, I felt like going to sleep after a while, but I was kind of afraid of toppling over, off the bench. So I stayed awake. What I found was that coughing did not relieve the ear pressure in the eustachian tubes, only plugging my nose and blowing did anything. However, when I turned my head, my ears would react with a very strong squeaking! And this morning when I blew my nose, the same squeak kept happening.

I can't say that I've noticed much of anything from this one treatment, as yet. I did not feel tired from the treatment, I do not notice any increase in energy today. I had no Herxheimer reaction, which is probably good because Humphrey says really the only time he sees that is if someone has Lyme disease.

This morning, just before awakening, I had a rather weird dream. Somehow in my dream an onion fell into a toilet. I was watching it slowly disappear into the hole, making its way into the "mouth" of the toilet, and in my dream I was freaking out because I knew it would plug it up and I did not want a plumber bill. So I managed to reach down and grab the skin of the onion and pull it back out. Now I don't know if in this dream, the toilet represented my neck/gullet and the onion represented a blockage... why an onion? Bizarre...

I left the Hoyer lift at the clinic and I have another appointment for next week. I will do 4-5 treatments at $100 each, but then I will seriously consider some form of home treatment. Most of the home chambers go to about 1.4, and the oxygen concentration is much less, so I have to continue researching home units because there really pricey and I do not want to invest in something worthless.

All in all I was pleased that I was able to even get into the hyperbaric chamber and could do the therapy sitting up because I tend to spaz out when I lie down that would not be copacetic in such a small space with such hard walls.

Last night I thought I had a bit better mobility in my left arm, but I would have to repeat this treatment to really be sure. So all in all nothing dramatic, certainly not the instant improvement I experienced with phlebotomy.
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Postby Bethr » Wed Mar 09, 2011 2:23 pm

Interesting though, keep us updated.
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Postby Bethr » Thu Mar 10, 2011 12:15 pm

Is adding iron to cereals a good idea? I'm reading labels now and there are very few that do NOT have iron added.
Take a look at this Video :?

Iron Man experiment - Extract the iron from your cereal
http://www.youtube.com/watch?v=ZIyKe9VE6o8
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Postby Bethr » Fri Mar 11, 2011 11:07 am

Just found this interesting abstract.
Too much iron reduces levels of Vitamin D but improves after phlebotomy. Wish I had done those tests now so I'd have a comparison.

Low serum 25-hydroxyvitamin D in hereditary hemochromatosis: relation to iron status.
Chow LH, Frei JV, Hodsman AB, Valberg LS.

Abstract
Under normal conditions, vitamin D absorbed from the diet or synthesized in the skin is transported to the liver where it undergoes hydroxylation. The purpose of this study was to determine whether excess hepatic iron affects this process and the subsequent production of 1,25-dihydroxyvitamin D (1,25-[OH]2D) in the kidney. Mean serum 25-hydroxyvitamin D (25-OHD) concentrations in untreated hereditary hemochromatosis were 13 +/- 6 (SD) in 9 patients with cirrhosis, 13 +/- 6 in 5 patients with hepatic fibrosis, and 22 +/- 6 in 10 patients with normal hepatic architecture aside from siderosis and were significantly lower than the levels found in 24 controls matched for age, sex, and season, p less than 0.05. The mean serum 25-OHD levels in the two groups with hemochromatosis and hepatic damage were significantly lower than the value in the group with normal hepatic architecture, p less than 0.05. Serum 25-OHD levels in individual patients were inversely related to the size of body iron stores as measured by exchangeable body iron, r = -0.64, or serum ferritin, r = -0.47, p less than 0.05. In 15 patients removal of excess body iron by venesection therapy produced a significant increase in the mean serum 25-OHD from 20 ng/ml to 30 ng/ml, p less than 0.05. In contrast, mean serum 1,25-[OH]2D levels were similar in iron-loaded and control subjects, indicating that the regulation of this metabolite was intact in patients with hemochromatosis. The results reveal that the low serum 25-OHD concentration in patients with hemochromatosis is directly related to the extent of iron loading and it is improved by venesection therapy.
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Postby Bethr » Mon Mar 14, 2011 1:41 pm

Merlyn, thought with your background you might know why I've experienced some other rather strange changes since I was de-ironed.
Firstly my nails have changed shape. I've never had any nails as they grew straight out with no curves, and were very soft and they caught on everything. i got into the habit of biting them from very young and could never stop, they anoyed me so much. My nails now look great, they curve over the end of my fingers tightly and have a nice curve at the sides, and are so strong I can use them like tools and they don't break or tear. It's a novelty for me, and I can't stop looking at them!

Secondly, my moles are falling off. They are rather large ones that stick out. One fell off my neck last month and the big one of my arm is half off, another on my leg is half off too. This is so weird!

For a couple of weeks over Dec/Jan I had bright blue sweat under my arms. It stained about 6 pieces of clothing. I blamed the deodorant and the mnfr had me send the clothing to Australia to their Lab, and they said it was a reaction between something coming out of my glands and something in their product, and it was very unusual.

All I know is things are changing for me, in good ways (other than that blue sweat :lol: ).

My sister did feel better after the small blood takes. More energy and less brain fog. She's keen to continue it.
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Postby Merlyn » Tue Mar 15, 2011 1:34 pm

Dr. Code lives on Vancouver Island, same as me...

http://www.youtube.com/watch?v=sIXwnpLa ... r_embedded

It's very interesting, this talk. My guess is far more people are doing phlebotomy than we know of, but I read the other day something very very interesting. And that is this... if you carry hemochromatosis genetics, you are far more susceptible to developing porphyria. (Perhaps this has been mentioned before and it went over my head...) I just met another woman with MS that has porphyria, and many things trigger it for her. Including brussels sprouts... she says there is an easy test... so the next sunny day, if I ever get one, I will try this. This could be why so much iron ends up in the brain... including and Parkinson's etc. who also carry hemochromatosis genetics...

Urine rich in porphobilinogen turns reddish-purple (uroporphyrin) on long exposure to bright light (toilet, ward station, lab). "Porphyria" means "purple".


I am going for another hyperbaric treatment today, but this article has some cautions about porphyria and hyperbaric treatment...

http://www.thefreelibrary.com/Hyperbari ... 0178220997

Bethr-am so glad you are seeing so many improvements, wish I could keep donating/bloodletting, but the hyperbaric forces more hemoglobin production, so maybe that will help me. Good grief, I could sure use it as I am losing my hand function rapidly.
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Postby Bethr » Wed Mar 16, 2011 12:06 pm

Yes, there is a connection between Porphyria Cutanea Tarda and C282Y hemochromatosis, around half of people with PCT have at least one C282Y gene. I was checked for this as I had the blister rsah most of my life, but when I had the blisters biopsied late last year, it turned out to be Pitariasis Lichenoides, where T-cells come out of your skin. No connection to iron that I can see there. I was negative for Porphyria when tested, but i didn't have the rash at that time, and thats when you need to test.

I have Porphyria in the back of my mind, in case a connection comes up at some time. I would love to have the full genetic testing some day, but the cost is around US$1500, and there are quite a few missense porphyria genes so it still may not be picked up.
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Postby Merlyn » Mon Mar 21, 2011 12:52 pm

Well, I did manage to do another HBOT treatment yesterday for a total of 1 1/2 hours. I find it very painful on the ears. And after the session, I experienced a nosebleed. Not a major one, but I am still blowing blood this morning... I gather this happens very often to scuba divers, and the technician said that it happens occasionally, but more usually with children. Especially children with cerebral palsy. Still, it was a small concern because I do not get nosebleed. The only other time I remember having one was when my brother hit my nose with a snowball and broke it. I was pretty young... so was he...

The technician said hyperbaric should be done at an intense rate in the beginning, but I cannot see myself being able to do that, financially or stress wise. I find it difficult to get to appointments frankly, it is all so complicated because my body does not work like a machine and public restrooms are no longer an option because they do not have ceiling lifts! It is a 40 minute drive to the clinic, 40 minutes back, and at least 1.5-2 hours in treatment. It is a long stretch, and I would be much more comfortable with home therapy, but the home chambers are rather pricey and I still have not determined through research whether they are worth the money. So I will do a couple more treatments and hope that I do not get more nosebleeds.
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Postby Merlyn » Mon Mar 21, 2011 1:03 pm

There is an amazing amount of information on this site... I am waiting for a call back from the office of Dr. Harch http://www.hbot.com/ to see whether they can give me any insight on portable whether they have any proven effectiveness. I joined a Yahoo newsgroup on hyperbaric therapy and there are three people with MS in the UK that have been using this therapy for close to 30 years and all three maintain that it basically drastically slow down progression and they are still walking etc.

I find some of these studies on this website fascinating...

http://www.hbot4u.com/research.html
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Postby Bethr » Mon Mar 21, 2011 2:46 pm

It sounds like a treatment that needs to be repeated to keep the oxygen levels up. So a home unit would definitely be helpful to say the least.

I've just been reading some of the comments from the Drs. at IVNSD and wonder if the bloodletting just makes my blood run more freely.
My blood seems to be a better colour after a year of phlebs, not so dark. It runs very freely. It took over 20 minutes for my first phleb, and I now fill the bag in under 5 minutes. If that translates to my brain...well....Just thoughts.
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Postby Merlyn » Tue Mar 22, 2011 1:21 pm

I did get a call from Harch hyperbaric. I am reluctant to reveal the name of the person I talked to her for one simple reason. She emphasized that in her busy life she found it hard to find time to make the phone call and would not speak to anyone else. I totally understand that, I find it hard personally sometimes to even answer e-mails or keep up to date on this newsgroup.

Having said that, the conversation was most interesting. The woman spoke to me has/had MS. Not wheelchair bound, but very symptomatic. Fatigue, legs like concrete, abnormal gait. An MRI showed she said a huge lesion on the top of her brain. But then she started actually working at the Harch hyperbaric center, in the multi-place chamber. So she got lots and lots of treatment when she accompanied children into the chamber. She gradually improved and is now totally symptom-free, and MRIs now show that lesion longer exists. And she said she was not the only case of recovery of MS, that the Harch center as had a number of people with MS totally get rid of their symptoms. But, it is not a quick fix. Treatment must be prolonged, and she still has to do occasionally tuneups, as do the other patients. Oxygen is a drug she says, and like other MS drugs, therapy must be done on a continued basis. And as an interesting side note, she also emphasized that one had to treat heavy metal toxicity. She herself has been taking Heavy Metal Detox for some time, she tested high in aluminum and lead. She occasionally does IVs of glutathione, and I was glad to be able to tell her about nebulizing glutathione! She found that fascinating and was quite excited about that option.

Frankly, I got quite depressed after talking to her, because she is dancing and horseback riding etc. and I thought I have been living in an area for the last seven years that has a hyperbaric center within reasonable distance and I could've been doing this therapy for the last seven years and maybe I would not be this crippled.

As far as the home chambers, she was very ambivalent. For one, she says they cannot supply the 100% pharmaceutical grade oxygen that people get in clinics. They cannot go down to the deeper pressures. Then again, she says there is a dentist with MS in New Orleans that uses a home chamber and says it is helpful, but he also was treated at the center and brought back to optimal health before he started to use it. She has no idea whether the home chambers could restore one's neurological damage as there have been absolutely no scientific studies using them. Her comment was that if one could not access a hyperbaric center, they might be better than nothing at all, but she could not give me any feedback on their effectiveness. So that part was disappointing, and I will have to talk to Dr. Lyn tomorrow night because she promised to do some research for me into home units. She said that the physiotherapist that is running the Seattle Healing Sanctuary is using a soft shell hyperbaric chamber, but it is very expensive, $22,000. It can go down to the deeper pressures, but again there is the question of the 100% oxygen that I will have to inquire about. Why the f***ck this is not better known, this treatment? Well, I guess it is better known in other countries, just not in our drug obsessed medical system.

This woman was so nice to talk to me, but I worry that people will start calling the Harch hyperbaric center, but I do not think this woman has the time to repeat her conversations ad infinitum. She phoned me very late at night because she works full-time, has children, and lectures and teaches, so her day is jampacked. But there you have it, there is more than one way it seems to successfully reverse the damage in MS. She warned me I have a long road ahead because I have been sitting in this wheelchair for seven years, but she also said regaining function is not impossible if you detox and get the proper hyperbaric treatment. I go for my third today, and am considering trying to do two a week instead of one, it's just that is expensive both in increased stress and money.
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Postby Merlyn » Thu Mar 24, 2011 4:56 pm

I am trying to set up a phone consult with the person that runs the Seattle clinic to see whether she could advise me on which home chambers might be effective. I also am going to do a live blood cell analysis to see what my blood looks like under dark field microscopy... and I am also going to ask my GP to borrow an oximeter for a day just to experiment with it. I want to see what the oxygen saturation rate is when I am up right, when I am laying down, and after taking liquid stabilized oxygen...


http://www.multiplesclerosistherapy.net/models.html
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