Phlebotomy anyone?

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

Postby Merlyn » Thu Jun 09, 2011 3:55 pm

NormB-I too am in Canada, but you are over the limit for safe ferritin levels. However, unless you have a Dr. that is open-minded, it will be hard to access phlebotomy. You could try a couple if your hemoglobin etc. is okay..., I would try it and see what happens if you can get your GP to agree. My husband's ferritin level is 450 and Dr. said he could try phlebotomy to see if it helped his aches and pains, primarily joint pain. So far he has not tried it, he does not have MS, just migrating joint pain.
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Postby Merlyn » Thu Jun 09, 2011 4:05 pm

Aargh matey, I am still waiting for my oxygen concentrator, so I have not begun my mild hyperbaric treatments. My guess is customs Canada is screwing around and holding it up... in Canada you are supposed to have a prescription for oxygen, so there might be a glitch happening. So frustrating.
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Postby Merlyn » Fri Jun 10, 2011 12:58 pm

http://www.youtube.com/watch?v=ljEp6jZu ... re=related

Whole series of recent videos on CCSVI, I have not watched them all..., just noticed the iron/hemochromatosis mentioned in this one... me
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Postby Merlyn » Wed Jun 15, 2011 4:49 pm

Well I am finally getting my oxygen concentrator. It was held up at customs because of a lack of a prescription. Yes, we all need a prescription to breathe LOL. I am not the first person to be trying this treatment, there is a testimonial on the histamine board from a person that's been doing it for six months. They have also done three CCSVI procedures and definitely restenosed twice. So I will try to stay as current as I can on how I react. This other person is having good results, their spasticity eases up after 45 minutes in the chamber and it lasts for 24 hours. They are also able to lift their legs after a treatment instead of having to move their legs manually with their arms... the thing is with hyperbaric, it is an ongoing treatment. But boy, if it can reduce my spasticity and increase mobility like my phlebotomy did, I will be over the moon.
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Postby blossom » Wed Jun 15, 2011 4:59 pm

merlyn, i hope this treatment gets you over the moon plus more. thanks for keeping us posted.
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Postby Merlyn » Fri Jun 24, 2011 1:03 pm

Well, this fits me to a tee... dentists have always commented on my class III maloccusional, but also how small my teeth were and other problems like four impacted wisdom teeth that had absolutely no room to surface... took surgery to remove them and there was no room for a canine tooth (had it removed in high school)... I am just doing research on sleep apnea and found that people with MS are twice as likely to have sleep disorders.


http://doctorstevenpark.com/sleep-apnea-blog

The Connection Between MS And Fatigue


June 8, 2011 by Steven Park

It’s a given that if you have multiple sclerosis (MS), you’ll be tired all the time. It’s thought to be a normal part of having this condition, just like many other chronic medical conditions. But here’s an interesting study that suggests that fatigue can precede MS by up to 3 years. The researchers found that many MS patients complained of fatigue to their doctors months or even years before the first clinical signs of MS.

Here’s my take on this: I’ve written in the past about how the vast majority of people with MS that I see in my office have small jaws and narrowed upper airway anatomy. In an informal poll I conducted on Medhelp.com’s MS forum, a very high number of people had an excessive number of dental extractions, couldn’t sleep on their backs, and many of their parents snored heavily. Having excessive dental extractions causes the oral cavity to become much smaller, making the tongue take up too much space.

I’m not discounting current thinking about the origins of MS, but it’s extremely interesting that most patients with MS have very narrowed upper airway breathing anatomy which prevents achieving deep sleep. Lack of quality deep sleep can lead to various neurologic, hormonal, metabolic and digestive problems. Many patients with MS also have obstructive sleep apnea, but most will most likely have upper airway resistance syndrome, which I’ve described extensively here and in my book.

For those of you who happen to have MS:
What’s your favorite sleep position (back, side or stomach)?
Did you have any teeth removed besides your wisdom teeth, and if so, which ones and how many?
Do either of your parents snore heavily?
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Postby Merlyn » Fri Jun 24, 2011 1:10 pm

Now that my company from California is gone, I can do more regular hyperbaric treatments. Yesterday, while in the chamber I was able to unfold my left hand and move it around a lot better... also the color of my hand is less purple. I find it disturbing that my hands have been becoming the same type of horrid purple color as my feet. I am actually doing research on nighttime oxygen, nighttime oxygen masks because I want to start using oxygen in bed... these oxygen concentrators are really cool, although I wish I had gotten the humidifier attachment when I got the concentrator, I think it is definitely needed.
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Postby PointsNorth » Fri Jun 24, 2011 1:16 pm

Had pleb last weekend and did not notice any changes in the first two days. I did notice some minor improvements in fatigue/balance/sensation in hands on the third day. I will try again in 2 months.

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Postby blossom » Fri Jun 24, 2011 9:17 pm

merlyn the sleep apnea article and the rest of the information is so interesting

i can not sleep on my back and everything else fits me


more food for thought thanks
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Postby Merlyn » Sat Jun 25, 2011 12:59 pm

This is a really good video explaining sleep apnea... can you get an overnight oximeter test to see whether you are having desaturation episodes where your blood oxygen levels fall through the floor?


http://vimeo.com/13765467

If one has jaw problems (no one told me this, especially not a dentist), you are far more likely to have sleep apnea!
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Postby Merlyn » Thu Jun 30, 2011 1:06 pm

I now have my oxygen concentrator, and I have done about six hours total of chamber time. This is just a fraction of the time required I gather to see any permanent/lasting improvement. But I thought I would give a short account of my experience thus far. One, I find my time in the chamber surprisingly relaxing. Inside the chamber, you hear the compressors and the bag itself kind of breathes once the pressure gets up to the 4PSI... but you cannot really hear much else from outside the chamber. I kinda like it, because I am removed from the demands of others! I do not have to talk, I do not have to listen, I do not have to exert myself in any way. Also, I suspect that oxygen itself has a physiological calming effect. Whenever you are stressed, they tell you to take deep breaths and I think I read a book years ago called The Relaxation Response... anyway, my oxygen concentrator is a 10 L machine, so the airflow is quite strong even in the chamber. I am using the nasal cannula because I find it easier to press my nose when I need to equalize pressure in my ears. I also need to get a humidifier attachment for the oxygen concentrator, because the strong flow of 93% oxygen feels like it's burning the inside of my nose, stripping the cells. Canada Post has been on strike, I have ordered the humidifier attachment but it has not arrived yet.

What I can say at this point, is that my spasticity is greatly relieved for a period of time after an hour treatment. It is not lasting 24 hours, but I gather that will hopefully last longer as time goes on. This treatment is supposed to be accumulative, so results last longer as time goes on. My left hand which has been clenched into a fist is now in a more relaxed position, and my fingers tend to stay extended rather than curling. Also, for 4-5 hours afterward, my left shoulder is far more mobile and does not resist movement so strongly. I could no longer lift my left arm/elbow up onto the arm of the wheelchair. Someone else has to manually place my arm into position and it can take some strength on the part of mover because it is so resistant. So there is some objective verification that the problem eases. Unfortunately, at this point it disappears, but six hours is not a heck of a lot of treatment time. I was not expecting anything at all at this point, so I am pleased.

I do have to nebulize after these treatments because I feel sick unless I get that zeolite into my system. On Sunday of last week, I simply did straight oxygen for 1.5 hours and I felt sick after that also, which I really did not expect. Last night, I asked Dr. Lyn about it, and she said most oxygen treatment is around 2 L, so what I am doing is a much stronger flow than normal and considering that oxygen kills all kinds of anaerobic organisms, I should make sure that I nebulize even if I'm only breathing the oxygen without being in the chamber.

I do not feel great after an hour in the chamber until I nebulize. After I nebulize, then I feel pretty good. Being able to do this at home on my own schedule is amazing. Financially, at this point it is comparable to a CCSVI treatment because I am in Canada and I would have to leave the country (I cannot see myself traveling at this point, I'm kind of beyond that). I am sleeping very deeply, it seems to be having a major impact on the quality of sleep. I am not dreaming, not that I remember, but I do feel like I am in a very deep place sleep wise. Hard to describe. I don't normally have a lot of problems getting to sleep, but I have turned into a rather light sleeper. Small things will wake me up and once I am awake, I find it hard to go back to sleep. It is like a light drifting in and out of the netherworld. On chamber days, I disappear into a six-hour coma.

Anyway, it's a bit premature to be declaring any kind of victory, but I am hopeful that more treatment will produce more results... with mild hyperbarics and MS they say 80-100 treatments may be necessary before you see any response at all.
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Postby Merlyn » Sat Jul 09, 2011 1:22 pm

Despite the fact that it is summer, and I love being outdoors during this time of year, I have been devoting most afternoons mHBOT treatment sessions of about 70 minutes in length. I am so afraid of being too hasty in telling people that I am having results this quick. Part of it is, I have responded to different therapies positively in the beginning, only to find that my response disappears and I am back to square one. So, all of my writings at this point must be evaluated with caution in mind. I do not want to convince anyone to pursue this avenue based on my initial observations because it could all unravel. For instance, when I first started to use NCD (Natural Cellular Defense), I thought I was seeing dramatic improvement, but it only lasted a short while. I understand they changed the manufacturing process of this product and I was not the only one that had the experience of feeling better and then regressing. But the disappointment was terrible to deal with.

Having said that, I am thrilled with what I am experiencing. I can feel my whole body relax after about 60 minutes inside the Vitaeris 320. The spasticity simply diminishes. The only thing that has ever helped with that is marijuana, and even that does not work to this degree. It is amazing how much relief I am getting. However, at this point it is not lasting 24 hours, my guess is that it is closer to 10-12 hours. But even this I must qualify, because when I originally started to notice this, it was only lasting maybe 6 to 8 hours. So the benefits seem to be elongating. Keeping my fingers crossed... my spasticity was beginning to frighten everyone. If my leg shot out, there was amazing rigidity and it was very hard to bend it back into position without waiting for a few minutes for it to relax. I was really beginning to fear some form of drastic treatment like a Baclofen pump in my spine or something, even though I don't tolerate oral Baclofen... I could not imagine what I would be doing to try to deal with the pain of ever-increasing spasticity. For instance, lying in bed, I can feel the CNS tension start to build up and then I would start to kick. I have a pressure sore on my heel from this constant cycle of sheering against the sheet/mattress. This is not happening so frequently, but it is still happening, so I am hoping that as I keep doing these treatments, that I will eventually get a 24-hour relief cycle.

Also, my left hand has turned into a fist, always closed into a tight ball. It is now much much easier to keep my fingers extended. This is providing some much-needed pain relief. My left thumb is always flat across my palm, and my fingers pressing down on it. And then when I spasm on top of that, my fingers are crushing my thumb and it hurts! This is much better, now during the day my fingers are unfolding and staying straight. I still don't have much control over them, but I am able to sometimes extend them willfully should they close up. I have had absolutely no ability to "make my hands listen" to any kind of command for some time. Yesterday, after I got out of the chamber, I noticed just how much easier it was to pick up the segments of a peeled orange and feed myself (I am right handed). I did not drop any segments, the motion of picking up a segment from the bowl and delivering it to my mouth was very smooth and natural feeling. My whole arm felt very normal, and my control over my right fingers was very much improved. My right hand/fingers has also been getting stiffer and stiffer and less functional. I had some company, and for the first time in a while I was not dropping my food and asking for help.

Every day except Sunday (on Sunday it is just my husband and I in the house) I try to do 15 minutes of standing at my standing frame. It takes two people to support my ascension to an upright position. One person on either side of me has to support under my arms as the hydraulic lift brings me up out of the chair. I have now had the standing frame for at least two years. Previous to that I was doing other standing exercises at the bathroom sink until it got too risky because I was losing my ability to control my upper body. Anyway, I would say it's been 10-12 years since I could feel the bottoms of my feet, the soles. My feet have been deadwood. For the last three days, I have been very clearly able to sense the bottoms of my feet! I can feel them now, they are almost ticklish. At times they tingle so much it is disconcerting because it's been so long since my brain has had to process that kind of sensory message.

I have only done approximately 12 hours of treatment with HDOT (High-Dose Oxygen Therapy). I do have to nebulize after I do these treatments because sometimes I feel a bit of nausea develop. I think all of us with MS know what it is like to get our hopes up and then have them dashed, so I do not want anyone to take this for more than what it is. It is very preliminary assessment of hopeful improvements. But will they last, and will they continue to broaden? I don't know yet, but it is kind of exciting to be in the process of finding out. Also, for me there was no real choice in pursuing HBOT in a clinic, I simply got stressed out trying to keep appointments. I love the fact that I can do this in my home on my own schedule.
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Postby blossom » Sat Jul 09, 2011 9:10 pm

thanks so much for updating. positive healing thoughts sent your way.
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Postby Merlyn » Tue Jul 12, 2011 1:18 pm

Hello Marilyn,
Thank you for your great message of hope and for telling us how well you are progressing. We are very happy that you are doing so well. One question you asked is regarding the quick results that you are seeing. I don't think the results are "too quick" – I would say these are the "expected" results within the time frame you have mentioned. In every case I am asked, "How many treatments will I need…."? Of course, we would all like to know the future but no one really say because results vary with everybody. However, it sounds like your progress is advancing very well. Another question and concern you are wondering about is: Will you loose what you have gained…? Possibly a small amount if you were to stop this treatment prematurely, the "conditions" did not develop overnight and may not disappear over the next night [sorry] however, you know what treatment is making a difference for you, so, continue forward with it. You spoke of spasticity [this is a cranial nerve issue], the benefit of oxygen for the cranial nerves is a healing effect and will accomplish what you are experiencing – relief of the spasticity, more flexibility, more feeling, enhanced circulation - this is the physiology of hyperbaric treatment on the cells of the body. Because all cells use oxygen and this treatment is non-specific all cells are enhanced. With time the sores and wounds will heal and we are happy that you are happy with the results and can accomplish the treatments in the comfort of your home.
We hope your progressive healing continues – and it will if you will.
Have a great day.
Lane Scott, PhD
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Postby Merlyn » Wed Jul 13, 2011 12:54 pm

Autism is also considered a neurodegenerative condition...



http://autism-nutrition.com/hbot-autism



Glutathione
Studies have also shown HBOT to increase glutathione levels by 15 percent for at least 24 hours after therapy.
Glutathione is vital to the detoxification and excretion of heavy metals such as mercury. Heavy metal poisoning is strongly linked to autism and people with less active glutathione are not able to eliminate heavy metals as quickly and effectively.
These areas are all of interest in the treatment of Autism Spectrum Disorders (ASD) as they are often impaired in children with ASD.
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