Phlebotomy anyone?

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

ccsvi

Postby blossom » Sun Mar 27, 2011 8:16 pm

anyone know or have thoughts on the hbot helping to prevent clotting or intimal hyperplasia after getting treated for ccsvi? my thoughts would be that it may help. hbot is used for wound healing.

thoughts on use of hbot while doing blood letting?? could it enhance that treatment in anyway?

also, for merlyn, i'm hopeing you find evidence that an inhome soft chamber will work as well as hosp. grade for our situations. i had been looking into this a couple yrs. ago and could not decide with the info. i could find. of course the sellers of the soft chambers have one way of promoting and the hosp. grade their version. my concern as merlyn's is that that is a lot of money to invest and not work as well.

i would think 100 percent oxygen would be the best-but for most of us it may be impossible to do that. so, i watch and follow you in your comments.

this is off the wall, but if a person was able to get their hands on oxygen treatment like people use for breathing problems and use it while in a soft 95 percent oxygen hbot--would that be overkill or dangerous? just fleeting thoughts.

this thread is well worth staying front page--especially considering the role iron is supposed to play and blood letting is the best way to clean it up.

thank you merlyn for bringing it here and thank you bethr for shareing your story of recovery. hope your sister starts improving.
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Postby Bethr » Tue Mar 29, 2011 12:40 pm

Thanks Blossom. My sister is doing really well, not much fatigue compared to normal and less brain fog. She's had three bloodletting sessions now and is very keen to continue.
It means so much to get more energy!
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Postby Merlyn » Tue Mar 29, 2011 1:34 pm

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Postby Merlyn » Wed Mar 30, 2011 1:24 pm

I am still researching the whole mild hyperbaric treatment option. It seems that every time you go to dig deeper into any given subject, you find almost equally convincing polar opposite arguments. Some say it is useless, some say it is better... I am trying to isolate research that is not linked to a manufacturer that has a vested interest in selling you their product.

http://www.discoverhyperbaric.com/mild- ... icles.html

I'm also talking to a company and asking very specific questions, like whether my cat could puncture the chamber with his claws LOL Wouldn't that be something, poof, there goes your last best chance, pop like a balloon.

This is a very interesting website, very much nonpartisan. Reading the stories is very eye-opening... and there is good information in general on the site. Seems to work for any kind of neurological/brain injury at lower pressures...


http://www.chamberofhope.org/
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Postby Merlyn » Wed Mar 30, 2011 1:38 pm

http://www.alternative-medicine-digest. ... rosis.html




Dr. Nelson was able to get him into a near remission with conventional techniques of the tiem (19800, but he went into rapid regression at age 37, following a time of stress. All of this regression completely reversed within 10 treatments of low pressure HBOT with Dr. Neubauer. He continues to take occasional treatments to maintain his health. Dr. Neubauer says he sees this kind of improvement on a regular basis.

Neubauer has found that relatively low pressure HBOT (1.3 to 1.5 atmospheres) works best. Higher pressures may not work at all, and the studies finding no positive effects are largely using the higher pressures. Treatment can occur in a medical office, or new portable home units are available. Dr. Rowen says that his HBO provider, Dr. Todd Kaufmann, can help those who want their own unit. Dr. Kaufmann's phone number is 800-635-4334.

Sources: Second Opinion newsletter, the May 2003 issue and the June 2003 issue, by Robert Jay Rowen, M.D.
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ccsvi

Postby blossom » Wed Mar 30, 2011 2:17 pm

merlyn, i understand your questions with this. when i was trying to find out stuff i kinda just put it on the back burner but your interest and findings has renewed the spark.

the pressure doesn't seem to be so much of a issue as even in hospital grade for us it would not be real high pressure-is that your understanding?

but, i can't get the oxygen part yet. i've read that certain viruses and such can't survive in pure oxygen so it's great for lymes and such. so that's good thing. i know they are saying that 95 per cent with a good oxygen gen.is just as good. but, i can't get my head around that. do you?

i guess at this point unless i can find out more in the meantime maybe i'd consider renting if what you pay in rent comes off the price if i would keep it.

what is the name of the one chamber you said you could take a wheelchair in?
i know my power wheelchair and me are not lightweight and where i have carpet it is hard on it. so the material these are made of better be real tough.
i know the one i tried at health place i wouldnt think it would be that durable.
it was one you had to be laid down in. i only got in it once becuse them getting me out about killed me.

yeah, i think kitty could be a threat.
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Postby Merlyn » Wed Mar 30, 2011 4:27 pm

This is the wheelchair model that I was looking at, but I am waiting for some more definitive answers on its user friendliness...

http://mildhyperbarics.com/the-conical- ... 4-chamber/

If I do go this route, I would want an oxygen concentrator so that you're breathing in about 95% oxygen through a mask. But I still do not have all the answers I've been seeking.
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Postby Merlyn » Sat Apr 09, 2011 1:34 pm

Well, I have been in pursuit of trying to figure out a way of doing proper hyperbarics at home. The picture of the hardshell hyperbaric chamber on this website:

http://www.cunicochiro.com/doctor/chiro ... herapy.htm

has been haunting me, and through Dr. Lyn I contacted a wonderful physiotherapist in Seattle who thinks she has an engineer who could build me this for around $15,000, although we have to nail it down. As it turns out this physiotherapist trained in hyperbarics at my local hyperbaric center and she knows the technician very well. I was kind of amazed to hear this, because I really liked the technician who seemed very educated in all kinds of alternative approaches. I just cannot see myself paying all that money for a plastic chamber that not only would have durability questions but user-friendly questions also.

I really don't have tons of money for this but if I could get a hardshell chamber that was comfortable to use, then taking a loan would be worth it.
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Postby Merlyn » Sat Apr 09, 2011 1:37 pm

Just talked to a guy in a wheelchair that could not use a soft chamber. The bags tend to require you to lie down and I totally spaz out when I am supine. I mean it is bad. So I cannot see myself using the types of bags that you spread out on the floor. And the wheelchair bag, the grand conical dive is not a wheel in design. You're supposed to pick up the wheelchair and put it inside the "tent". Yeah, like I have six bodybuilders hanging around the house all day long that will lift me and my wheelchair up and put me inside... what a dumb approach.

The reason I am so attracted to the hard chamber that was pictured at that chiropractors is that the chamber could be designed to be used with a Hoyer lift. I want to be able to sit in the chamber and use my laptop or read. And I want the chamber to be easy to use, to transfer in and out of. I do not know enough details yet, have not spoken to the engineer yet, but the physiotherapist says she is very excited about this project and she seems to be very well connected, so I am hoping it can happen without too much delay.

One of the things that I have been observing/noting over the last few months is how purple my hands are becoming. This is been apparent in my feet for many years, the discoloration, the purple hue, sometimes verging on black depending on how I've been sitting. But now my hands are getting more and more mottled/purplish black it seems to me that the more purple I become, the more function I'm losing. Personally, I keep thinking that this is all tied up to structural defects in my spine. My weird jaw... was diagnosed with TMJ years ago, had a splint made, wore it many nights but gave up on it as being uncomfortable and ineffective. But I have one of the worst under bites that many dentists have ever seen. Most think I was in some form of accident to have such a severe maloccusional.



http://www.alternative-medicine-digest. ... rosis.html



In Tacoma, Washington, a dentist, Farrand Robson, DDS, is producing major relief for a variety of major health problems with a dental splint that enhances breathing and thus increases the body's intake of life-giving oxygen. Patients with sleep apnea, hypertension, back pain, fibromyalgia, TMJ, thoracic outlet syndrome and even multiple sclerosis symptoms have responded to this treatment. A 46-year-old contractor with visual field loss, leg numbness, leg pain, "walking like a drunk," and more, was sent to a neurologist, who found MS lesions in the white matter of his brain. He went to a prominent specialist in multiple sclerosis. Heavy doses of steroids damaged his retina, leaving him unable to read. He could not crush a potato chip in his left hand. He considered suicide because of his total physical disablement.

His wife, who had been helped by Dr. Robson for her neck pain, urged him to see the dentist. When the splint was placed in his mouth, he was immediately able to reach 170 pounds pressure on a grip meter. His vision improved immediately, although he also needed surgery for additional improvement.

Dr. Rowen wonderts if multiple sclerosis could be more than white matter lesions damaging the brain, as is now thought. Why is it, he wonders, that brain lesions are poorly correlated with MS symptoms and why do lesions suddenly come and go?

Dr. Rowen himself was treated by Dr. Robson for long-term upper back tension. X-rays showed an abnormal reversal in his neck curve that, he says, was protecting his airway. The x-ray also showed an obliterated disc at C6-7. After treatment, the C6-7 disc could be seen and the abnormal curve partially corrected itself. As a result, the one-half inch of height loss he had noticed was restored. You can find out if there's a dentist in your area by calling Dr. Robson at 1-800-977-1945, or if you are in the Tacoma, Washington area, call 253-272-8651.

Source: Second Opinion newsletter, February 2004, by Robert Jay Rowen, M.D.
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Postby Merlyn » Mon Apr 18, 2011 4:47 pm

Rossignol's replay about capillary growth and mHBOT/HBOT

Forgive me for the length of this post, but I felt compelled
to write this, given some of the recent posts on this board. A lot
of information comes up on this board stating that 1.5 atm causes
angiogenesis, or growth of new blood vessels, but that 1.3 atm does
not. However, Dr. Efrain Olszewer from South America had data
demonstrating that 1.2 atm causes angiogenesis. He had used this
pressure for peripheral atherosclerosis (claudication) and has found
growth of new arteries by using pre- and post-angiogram. Certainly,
autism is characterized by cerebral hypoperfusion (decreased blood
flow) and angiogenesis probably is one way that HBOT helps autism,
but this may not even be the primary way. The amount of cerebral
hypoperfusion in autistics compared to controls is about 8%, so a
small increase in oxygen delivery may be all that is needed to
overcome this.

Other possible mechanisms include:

1. In several recent studies, autism has been shown to be
characterized by neuroinflammation and gastrointestinal
inflammation. There are multiple studies demonstrating the
beneficial effect of HBOT in inflammation. Children with autism
have high levels of cytokines which HBOT has been shown to
decrease. Furthermore, one study in particular demonstrates that
the anti-inflammatory effect from HBOT appears to be due to the
pressure effect and not the oxygen effect (I have these references
if you want).

2. Autism is characterized by multiple problems in the immune
system, and HBOT has been shown to have beneficial effects on the
same type of problems (again, to keep this brief I am leaving out
references, but can give them upon request).

3. Several recent studies have shown abnormalities in producing and
using serotonin properly in the autistic brain. In some new
studies, HBOT has been shown to work like an anti-depressant and can
increase serotonin levels in the brain.

4. A recent study has shown that children with autism have impaired
production of porphyrin, which is necessary to make the heme in
hemoglobin that carries oxygen. This may impair the delivery of
oxygen in autism, and obviously HBOT will help.

5. HBOT recently has been shown to increase the mobilization of
stem cells from bone marrow. Other studies have shown that these
stem cells can cross into the CNS and form new brain cells. Also,
areas in the brain can make stems cells. I think this is a very
exciting finding!

6. Children with autism have increased oxidative stress and HBOT
(especially under 2.0 atm) can decrease oxidative stress through up-
regulation of antioxidant enzymes and increased antioxidant
production.

7. A good number of children with autism have overgrowth of
abnormal bacteria in their gut and several studies show that
treatment of this bacteria with antibiotics leads to improvements of
autistic symptoms. HBOT has been shown to decrease the amount of
abnormal bacteria in the gut. HBOT can also kill viruses as evident
by studies showing decreased HIV viral loads with HBOT. As you
know, viruses are one of the problems that children with autism can
have difficulty with, mainly caused by the immune dysfunction listed
above.

8. Multiple studies are beginning to reveal mitochondrial
dysfunction in autism. I am beginning to think that this may be the
major mechanism of action of HBOT in autism. Certainly, different
children may have different levels of dysfunction, which may explain
why different children respond clinically to different pressures.
HBOT increases the amount of work mitochondria can do (mitochondria
are the energy producing areas of the body) and also recently has
been shown to increase the production of mitochondria.

In my clinical experience, we have seen good results in
about 80% of children with treatment at 1.3 atm/24% oxygen. A
similar experience has been found with several other physicians
treating autistic children. However, some children do need higher
pressure. I think it is reasonable to start at 1.3 atm if that is
what someone can do/chooses, and then move up to a higher pressure
if results are not seen. It is also reasonable to start at 1.5 atm
if that is what someone can do/chooses. However to say that "you
are cheating your child" if you give 1.3 atm instead of 1.5 atm is
an inconsiderate and unnecessary statement. We have just finished a
study on 18 children with autism in which we compared 1.5 atm/100%
with 1.3 atm/24% oxygen. I am in the process of submitting this for
publication. The outcomes in the two groups were fairly similar,
however, since the numbers were small, more studies need to be done.

Respectively,

Dan Rossignol, M.D.
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Postby Bethr » Sun Apr 24, 2011 12:44 pm

Bit of an update here on my sisters bloodletting. I think she had about 5-6 sessions and we went and had blood tests and and iron panel a few weeks ago.

I think the results may shed some light on our problems with iron.
And I would appreciate any feedback from those that understand iron metabolism.

Jan 2010 Apr 2011 (after phlebotomy)
Iron 15 23 umol/L (11-30)
TIBC 59 70 umol/L (40-70)
Transferrin sat 25% 33% % (21-50)
ferritin 154 152 ng/mL (15-150) high
transferrin N/A 3 g/L (1.9-3) high


So after phlebs (small and regular), my sisters iron levels and saturation went up!
Ferritin stayed the same, and the most unusual thing is the high TIBC and
transferrin. Her transferrin is reacting as though she is anemic, but she obviously isn't. At least I think this shows that we have problems with iron
metabolism.

A call to Jimmylegs - I can't find anything on people with high ferritin and high transferrin (TIBC) at the same time. One should go up as the other goes down. Any help here would be really appreciated.

I'm off to get a second opinion at the Hemotologist shortly (probably within a month) and i really need to research this prior.

Cheers............
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Postby blossom » Sun Apr 24, 2011 1:18 pm

hi bethr, i'm sure you understand all this better than me. i'm trying. but here in the usa there is hemochromatosis center i think in florida. even if not diag. with hemochromatosis they were helpful with info. the hemchromatosis dr.'s around here won't help unles diag. neither will the reg. dr.'s threre again i'm thinking one shoe isn't fitting all according to their standards. so here we are playing doctor we know iron deposits are a part of the problem with ms and who knows what and all we want is to be given the chance to try under a supervised safe inviroment and be monitored by those that can answer your questions. and mine. what's the harm?
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Postby Bethr » Sun Apr 24, 2011 2:08 pm

Hi Blossom, Iron metabolism is little understood. Researchers are calling the latest iron metabolism discoveries up there with the discovery of bacteria!
Iron is being tied in with so many diseases now including most of the brain problems and with cancers.

My sister and I are at the point that we will be taking this further if we don't get at least trial treatment by phlebotomy. We both know that it fixes us up a treat, but needs to be ongoing.

The way I'm seeing it is that my sister and I are genetically similar. We both have one single C282Y gene and load more iron than a normal person, thats been proven in research. What seems to happen when we bleed is that our body immediately thinks it is iron deficient and starts to load iron more heavily, whether we already have good iron stores or not!
This would over the years build up storage. If the storage is in tissue other than the liver, then it would not show up too much on blood tests, ferritin is a measure of iron in the liver. I bleed a lot, rectally (nasty waterski accident left me a bit damaged at 16yrs and pregnancies just made it worse) plus I've never missed a period in my life.
Yet I had this way over the limit transferrin saturation and high+ ferritin.

I responded really quickly to the phlebs, my ferritin and transferrin saturation came down and I felt instantly better with each phleb.
My sisters problems are much longer standing, she gets relief from the phlebs but we obviously haven't taken enough blood to get her iron stores down. She was injected with iron as a teenager weekly. So her problems started much younger than mine and she is more severly effected in the MS sense.

I have found that there are "Best Practice" guidelines for treatment of hemochromatosis published by our Govt. four years ago and my Drs. have not followed them. My blood tests were ignored. In fact seven Drs. have missed the boat so far. including 5 specialists.
So if nothing eventuates from the second opinion I'm going for, then I'll take a case to the Govt. Health and Disability Commission.
We can't legally sue in NZ. But there are Commissions to sort out problems in that regard.

I hope I don't have to go that far. But I think it would help get treatment for others in my position so may be a good thing if i can handle the stress of taking on the Doctors involved.
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Postby blossom » Sun Apr 24, 2011 6:51 pm

i hear you loud and clear on that bethr. it just should not be this hard.
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Postby jimmylegs » Mon Apr 25, 2011 9:03 am

bethr i happened to search the forum for my own name and found your post. i will see if i can find anything to help out.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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