Phlebotomy anyone?

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Re: Phlebotomy anyone?

Postby Merlyn » Sat Oct 29, 2011 1:25 pm

Now that I've done over 100 hours in the mild hyperbaric chamber, I thought I would give a quick update although there is not much different to report.

I still get a lot of joint pain relief from doing a "dive", and in many ways that in itself makes it worthwhile. I do not take any pain medication beyond a daily aspirin, which I am doing more for hypercoagulation than for pain. Much of my joint pain comes from having to use slings for transfers/getting dressed. I have one sling that is more like cocoon and does not require any pressure on the shoulders, but I still cannot figure out a way to get dressed without using a hygiene sling which causes one to be lifted with the sling coming under the arms and it puts a lot of pressure on your shoulders. I am 55, too old for this crap. It is like a repetitive stress injury, so the fact that the hyperbaric chamber helps is actually kind of amazing.

I am still far more mobile once I am out of the chamber after a 90 minute session. Unfortunately, the results do not last more than 8-10 hours. Once again, weighing the pros and cons, I find it worthwhile to do the session because I love the feeling of additional mobility even if it does not maintain. And who knows, what will 300 hours do? At least it is a natural treatment and I know if nothing else that will help me in this regard. There are periods after a session where I can wiggle my large right toe, although this too disappears. However whatever this happens, it begs the question of how that is possible. If the nerve damage were permanent, there is no way I would get periodic limb movement! I mean dead nerves would be dead nerves, so there must be an oxygen component...

The peripheral neuropathy decreases for a while out of the chamber... and lately I have been able to control my left arm much better even while out of the chamber. So that is why I cannot speculate on what might happen at a 300 hour mark... maybe some of the improvements will start to maintain, which would be wonderful. My hands do not close up into such tight fists, that seems to maintain also these days.

So all in all, improvements are not miraculous/dramatic at this point on one level. On another level the fact that it helps at all is pretty damn good. I was diagnosed in 1992 with primary progressive MS, so my problems are very long-standing, not meaning "standing" because I'm sitting!

I notice also that when I get out of the chamber I have more stamina for the rest of the day than I do if I don't do the chamber. If I skip a day, simple things like feeding myself a dinner is more difficult, the umpteen lifts of the fork tires me out, or maneuvering the wheelchair tires my hand. On chamber days, I am better at lasting.

I am waiting to find out the results of a sleep study that I did this week. I have no idea how long it will take to get those results and I don't know that the test will be terribly accurate. There was so much equipment to wear while sleeping that I was not used to, I kept waking up. So I did a second night, but the battery on the main gizmo conked out sometime during the night. Who knows, they might phone on Monday to ask me to repeat this study...

I am not disappointed in the chamber really. I wasn't expecting any sudden turnaround in my condition, and I am terribly grateful for the relief that it is providing. It sure is expensive and I cannot advise on getting one because of the cost.
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Re: Phlebotomy anyone?

Postby blossom » Sun Oct 30, 2011 10:50 am

merlyn, thanks for keeping us updated. although your improvements are minimal at this time in some ways they are huge. at least when we are in this shape even the little things mean a lot. hope to hear you are continuing to heal.
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Re: Phlebotomy anyone?

Postby Merlyn » Mon Oct 31, 2011 12:15 pm

Yes, even though the improvements were not astounding/dramatic, the fact that there are improvements in my long-standing Primary Progressive MS, even small improvements are huge...

If there were a hyperbaric center closer to me, I would consider doing some hard chamber treatments, but the drive into Victoria and the fact that their chambers are not really accessible makes it very time-consuming and physically stressful to get into the units. Plus they are $100 each treatment, which adds up. I am still hoping that the lower pressures work as well, that they just take longer. It is very comfortable for me to do this at home, and the pain relief in itself is worth the time involved. More and more, I simply relax and either think in a kind of meditative way, or I nod off. But I must say also, that as time goes on and I do more treatments, I can feel (and I know how unlikely this sounds) my brain relax. It is like there is a switch and either the brain waves are changing, or the physical brain itself is going into some form of jelly state! But I can actually feel the relaxation response and it is very calming and feels like it is a healing process.

I am not walking so that has to be a minus just on circulation levels etc. The people who ran my home sleep study just phoned this morning, and he said he would phone me back if after he had downloaded this study it indicated that I did not sleep for a straight five hours. I will be very interested to see what it shows because one of the things that really surprises me when I am in the chamber and I start to nod off is how I wake up snorting and realize that the throat collapsed... this is not something I have been aware of during the nighttime. Anyway, I have no intention of stopping my dives, I mean here it is winter and on the Wet Coast, there is not a whole heck of a lot to do outside anyway, might as well cocoon in the chamber.

http://www.abc26.com/videobeta/d75d2ca6 ... yperbarics
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Re: Phlebotomy anyone?

Postby Merlyn » Sat Nov 05, 2011 12:52 pm

I have definitely been noticing at night, that I am able to use my left arm to assist getting my T-shirt off at night. It is not as stiff, and my left fingers are also a little more amenable to control. I think I was expecting quicker results, but that is my own impatience and many of the articles I've read have been very clear that the timeline can be unpredictable for any given individual, but that 80% of people with MS should respond to treatment, especially ongoing treatment. And that the mild pressures take longer, but in the end are safer. I am not wanting to discourage anyone from trying this therapy if they can afford it because it is/can be home-based, which is something that is vital for many of us. I do know that when I get out of the chamber sometimes, I don't feel great, but as soon as I nebulize, that feeling goes away immediately and then I am more energetic and physically stronger.

The other thing I've noticed, is that for months I have had a lot of pain in my left arm, particularly in the morning. Bending my arm, trying to touch my face with my left hand has been agony. That is so much improved! I think I am about to reach the 115 hour mark, but I think that time spent in the chamber is well worth it for me. I think if I had had this thing five years ago, I would have been much better off now, but of course I didn't know about them and I have also been a bit strange in that my denial has been very entrenched. In other words, I kept thinking that chelation alone would fix me and I did not pursue many other modalities beyond nutritional/supplements etc. I don't know whether I am weird or what, but I kept thinking/believing that I would not keep getting worse, even though the evidence was clearly refuting my mind.

Anyway, I am not "endorsing" mild HBOT, but neither am I wanting to discourage anyone from trying it if they can afford it because in my experience it helps with pain, edema, energy, stamina, mobility... at least for a few hours immediately after getting out of the chamber, but it is also seeming more likely that there will be more permanent positive effects also. For so many of us, time is of the essence and this therapy may take many months of devoted treatment.




http://hbot-therapy.com/tag/hyperbaric-chamber/

Portable Hyperbaric Chambers – The Origin :

These portable hyperbaric chambers were originally developed and used for altitude sickness. The benefits of such hyperbaric chamber to a number of other off label conditions such as autism, lyme disease, cancer, stroke, cerebral palsy, multiple sclerosis, cardiac conditions, brain injury, and other immunodeficiency disorders do have research and case studies to substantiated the effectiveness.

Recent studies have also shown that hyperbaric at a lower pressure for a period of 6 months or more is more effective for most conditions as the mild hyperbaric oxygen chambers have an immune modulating effect and hyperbaric at a higher pressure has a tendency to be immune suppressive over time.
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Nov 11, 2011 1:47 pm

http://www.youtube.com/watch?v=Cp1eBaFIRFw

http://bethstedman.com/2010/05/14/beet-kvass/

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Re: Phlebotomy anyone?

Postby Merlyn » Fri Nov 18, 2011 1:31 pm

Well, I got a message yesterday from Medigas, the people that did my overnight sleep study saying that my doctor had approved a CPAP machine trial. It turns out I gather that my overnight sleep study showed that I am having around 12 episodes per hour! of stopping sleep... I don't have any more details as to what oxygen level I am going down to etc. My doctor's office must be very disorganized... I phoned to ask about the results, and they told me on the phone that everything was normal. But then Medigas phoned to tell me I have to set up an appointment to fit a mask, at a cost of $250, but I could try the CPAP machine free of charge for one month.

So, I cannot get there until November 28, at which time I will shell out $250 for a custom-made mask, and I will try a CPAP machine for a month to see if it impacts the way I feel. But at any rate, it would appear that I do have Obstructive Sleep Apnea, although 12 episodes per hour is considered mild! Normal is under five times per hour, I don't know what severe is. I do not think stopping breathing 12 times an hour is healthy for anyone, but I guess I have to do more research on the health effects of mild sleep apnea. I am glad I did the overnight sleep study, I had to push for further investigation, and I think that's the whole MS diagnosis problem, that once you get labeled with that, nobody wants to look for root causes. They do know that lack of oxygen in the blood predisposes one to blood clots.
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Re: Phlebotomy anyone?

Postby Merlyn » Thu Dec 01, 2011 1:25 pm

. I have been officially diagnosed as having sleep apnea, a condition where you stop breathing due to throat collapse. It cuts off your air supply and then you wake up in a panic. My oxygen levels were falling down to 80%, for less than a minute but I gather it is unhealthy to do that. Not only do cells die but one does not get restorative sleep, REM sleep is interrupted. It's funny, but dentists should have been aware that I was at risk of this because I have a very small jaw and each dentist I've ever seen has commented on this. Obesity, neck size and a small jaw are major risk factors for sleep apnea. My jaw was so small my canine tooth never came in until I was 13! It was then extracted and I had four impacted wisdom teeth which had to be surgically removed under anesthetic. Dentists would also comment on how small my teeth were so they were kind of amazed there was no room...


http://respironicssleeptherapysystems.respironics.com/

Well, this is the machine that I came home with yesterday. I have the "pillow mask" which I was assured was the most comfortable. Sort of makes me feel like an elephant, this long hose nose. I was told to start slow, to try to get used to it. One of the interesting things is that there is a modem attached so that they can monitor from afar, download data to determine what pressure is optimal etc.

He also gave me a T-bar thingy so that I can add oxygen from the oxygen concentrator should I desire. This unit comes with a built-in humidifier, so that should be helpful. The technician said I was having 12 episodes an hour which is considered high mild because moderate begins at 15. The technician's brother has MS, but he said he had Central Sleep Apnea and because my sleep study did not measure certain parameters, looking at the data from this machine will tell them whether I too have an element of that or whether it is all obstructive. My guess is my problem is obstructive due to the jaw deformity that I was born with.

I asked the technician a lot of questions about long-term effects of sleep apnea and of course he mentioned stroke. When I mentioned that some doctors are starting to call MS a slow stroke, he found that interesting, but he was not particularly a great source of information beyond the basics. For instance, I asked him if there were studies showing what happens when someone has childhood sleep apnea (2% of children have it according to some of the stuff I read, not a particularly high number). He said it has only been recently in a way that they could track people and the machines have been so loud in the past that the compliance rate has been low. He said he could not convince his brother to use the BiPAP machine and he found it frustrating because it might help him, but he hates using the machine so doesn't do it.

I was tired yesterday and did not feel like starting treatment, but I will tonight. I am very happy about the fact one can add in oxygen... frankly I am hoping that this treatment will be as effective as the hyperbaric chamber because it is time-consuming and this treatment would one, be longer at eight hours, and two it would just be part of sleeping.

Anyway, since my blood tests etc. are usually abnormally normal, this is one of the first things that I have been able to say showed up as weird. Chronic sleep apnea should be treated... so here I go. I hope it helps some MS symptoms, but only time will tell!
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Re: Phlebotomy anyone?

Postby blossom » Thu Dec 01, 2011 3:13 pm

merlyn, i hope it helps you too. how is the hbot going? thanks for always keeping us informed. you are a true pioneer in many efforts. and willing to share. thank you.
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Re: Phlebotomy anyone?

Postby pmouse » Mon Dec 05, 2011 3:25 am

HBOT

I have been using HBOT in such way:
20 tumes, twice a day for 1 hour
Once a week 1 therapy.

I started at presure 0,5 bar above normal air pressure (1 bar). And I changed my pressure up to 0,9 bar. There were very different responses of my body depending of presure. I foun out that maybe the best presure is around 0,7 bar.

Dous anybody had similar experiances?
What presure did you have?

Robert
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Dec 09, 2011 1:33 pm

I am not sure I understand the technicalities because the chamber that I am using goes to the equivalent of about 10 or 11 feet underwater or 1.3 ATA. I am no expert on this stuff. When I did a hyperbaric treatment in a steel chamber I went down to 2.0 ATA and didn't notice any thing whatsoever except the nosebleed. I am still using my chamber most days for about 60-90 minutes and find that it relieves some symptoms for a few hours, but I have noticed no permanent healing that I can determine. However, relief of joint pain and even temporary relief of spasticity is very welcome in my case. I am not sure however that it is doing anything to stop progression because my right hand is getting stiffer, so for me the verdict is out...


http://www.chicagotribune.com/sports/fo ... 2634.story
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Dec 09, 2011 1:52 pm

And to further complicate matters, I am doing the CPAP therapy. I have yet to keep the mask on eight hours, but last night I managed six hours. Medigas, the company that is monitoring the therapy, says I do not need a strong flow of air to keep my throat from collapsing, simply a mild flow. And when I keep the mask on with the mild flow of air, I am experiencing no apnea. I think once I get used to this, I may prefer having it simply because it makes breathing very easy. You get a lung full of air with no effort. I asked my sister and she said she remembers me snoring as a child. So my guess is that I have had apnea my whole life, which would make sense as it is obstructive apnea due to congenital jaw deformity... a class III maloccusion. According to the machine monitoring, I do not have any central sleep apnea happening, it is all obstructive. Over a seven hour time period, I snored 236 times! I spent a total of 40 minutes with oxygen levels less than 90%, but only one episode of 80% oxygen. I experience apnea 12 times per hour which is considered mild/moderate as moderate starts at 15. But it makes me wonder what health effects lifelong apnea has on one's health. The technician's brother has MS also, severe sleep apnea although this guys problem is central sleep apnea. When I was in the office of Medigas, I instinctively asked for the ability to pump oxygen into the CPAP machine and he gave me a T-bar plastic thing that will allow me to do this. I have not yet tried adding the oxygen is getting used to the machine/CPAP therapy is a bit of a struggle. An overnight oximeter test is a very noninvasive thing to do and I would encourage anyone to try it just to see what they discover.
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Dec 16, 2011 4:08 pm

I have decided to sell my hyperbaric chamber... it does help with certain symptoms like spasticity and joint pain temporarily, but I do not see any permanent/lasting healing. For me, considering the difficulty of getting into the chamber (it takes two people) and then someone has to be nearby while I am in there because I cannot adjust position or roll over without assistance. For someone that could self treat, this might be just the ticket, but for me it is time-consuming for not just me, but also my helpers. But the main reason I am going to move on is that I do not feel for me that the time expenditure is worth the benefit. I am also finding that the CPAP might be doing just as good, because my stamina is better when I do it in my energy etc. This evening I am going to add oxygen to the CPAP machine and I will report whether that makes a big difference. I'm a bit disappointed in the hyperbaric, but considering how advanced I am with this condition, perhaps oxygen is one of the keys for me because it does provide some relief... and how would it do that unless it were part of the puzzle. I do not believe that they really understand what chronic obstructive sleep apnea does long-term, although they do know that it causes neurological damage over time. It also causes low glutathione! Anyway, I have been closely monitored by a technician and it seems I have no apnea when using the machine even though the airflow is not strong...
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Dec 16, 2011 4:19 pm

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Re: Phlebotomy anyone?

Postby Merlyn » Mon Jan 09, 2012 6:00 pm

Considering how screwed up people's iron metabolism seems to be I have been researching a supposedly rare condition called porphyria. When I do the conference calls on Wednesday nights with Dr. Lyn Hanshew, there is a woman on there most every night that many years ago suspected her problems might be porphyria even though she was diagnosed with MS. And her tests came out positive. But it is very hard to find a laboratory in the United States that will one, test for porphyrins, and two there is not a single laboratory in the United States that will tell you which of the eight types of porphyria you might have. Dr. Boyd Haley of OSR fame says the reason for that is that Mercury is the main trigger for porphyria (official literature says only one of the 50,000 people would have this condition).

Now Dr. Hal Huggins DDS has maintained for many years that MS is a type of porphyria, that as soon as you put Mercury into people's mouths you start to see porphyrin rings show up in the urine because it interferes with the production of hemoglobin. If you even carry the genetics for hemochromatosis, you are 17% more likely to develop a porphyrin problem. What gets very interesting is that the symptoms of porphyria mimic MS, the fatigue, the hypoxia, muscle wasting, muscle weakness, deformity of the hands because the musculature of the hands becomes shrunken, you cannot produce ATP energy.... a normal/healthy person should not have any porphyrin rings in urine. Dr. Boyd Haley says one of those ways parents can determine if their autistic child has been poisoned by mercury/vaccines is to test for porphyrins. But he says there is only one lab in the whole world they can tell you which of the eight types of porphyria that you might have. They are in Switzerland, I just e-mailed them a couple days ago and they did reply this morning. They said they sent a brochure in my e-mail, but I did not receive it, so I have asked them to resend. The test is €90, and I think this explains my reaction to phlebotomy (no, I have not given up on this bizarre/exciting response to my phlebotomy). I would love to keep doing it, except that my hemoglobin is still too low! When you lose porphyrins in urine, you cannot form hemoglobin properly and any kind of stress makes you much much worse because I guess people should produce more hemoglobin under stress! People with porphyria cannot produce enough hemoglobin under times of stress because they cannot produce it normally anyway. If one does have porphyria (and you must have the genetics for it), you would tend to develop it between the ages of 20-40. My first symptoms were at the age of 28, after my mother's suicide (STRESS).

For €90, I am going to go ahead and test for this and once and for all prove to myself the link to mercury. However, it gets complicated because they suspect Epstein Barr viruses might also trigger some types of porphyria. If porphyrin rings bypass the enterohepatic loop, then porphyrins get into the bloodstream and irritate the nerves. They cause chronic disease when they get into the bloodstream, and if someone give blood they find a major relief from removing the porphyrins.

I have no idea how long it will take to do this testing, but it seems I can do it without a Dr., and I am bound and determined to figure why phlebotomy was so incredibly dramatic.



Dear Marilyn,

Please find enclosed our brochure, there is a part about porphyrin.

Regarding the test, you just have to send me your adress and I will ship you a kit for free. Then you will find all the instruction inside, you just have to fill up the paper, put your urine sample in the glass tube, stamp the envelopp with our name on it and send it.

The porphyrins test cost 90€.

Please get back to me if you have more question.

Best regards.

Aurianne de SEDANO
Communication Manager
119 avenue Philippe Auguste
75011 PARIS
+331 43 72 13 98
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Re: Phlebotomy anyone?

Postby blossom » Mon Jan 09, 2012 8:49 pm

merlyn, by genetics do you mean say english, irish, scottish decent.

you always bring a lot to the table. thanks!

until everyone is cured it is like a crap shoot.
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