Phlebotomy anyone?

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

Postby Merlyn » Thu Jul 14, 2011 11:52 am

http://circgenetics.ahajournals.org/con ... 6/652.full

Although I have stopped reading much about hemochromatosis and its link to our condition, I still suspect that it is involved. I am trying to figure out whether genetic carriers are more prone to hypoxia. I have read that low oxygen levels in the brain is implicated in clot formation in the veins. I think that's what happens in airplanes with low oxygen, we get clots.

http://www.buzzle.com/articles/lack-of- ... brain.html

•Insufficient supply of oxygen to the brain can cause clots in the veins.
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Postby dc10 » Sun Jul 17, 2011 2:58 pm

Does anyone here with CCSVI which has been ballooned/treated tried having a phlebotomy?

if so what were the results?
did your symptoms improve? have you continued having regular phlebotomies?
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Postby PointsNorth » Sun Jul 17, 2011 6:51 pm

hi dc10,

I had phleb about a month ago and experienced no symptom relief. I will try again in another month. Perhaps multiple phlebs are needed?

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Postby Merlyn » Wed Jul 20, 2011 11:41 am

http://doctorstevenpark.com/multiple-sc ... ere-a-link


Found this interesting, because one of the very surprising discoveries that I've recently made is that simply breathing oxygen, using my oxygen concentrator is very helpful. After about an hour and a half of breathing 93% oxygen for about 90 minutes, my feet start to tingle like crazy, I can move better and I simply feel better. I have a very strange jaw, a class III maloccusional... every dentist I've ever seen assumes that I have been in a car accident and broken my jaw. I was diagnosed with TMJ, had a splint made, but it made my jaw hurt and I didn't really use it. I snore very loudly at night, and like I say I did an overnight oximeter test and failed! 26 desaturation episodes of oxygen falling to 80%... averaged out over eight hours 90% oxygen. Not good enough.

Am still doing the hyperbaric oxygen 1.3 ATA and very very slowly and noticing changes. Peripheral neuropathy in feet definitely improving, 10-12 hours of pretty good spasticity release, better left shoulder motility, and I can now wiggle my big right toe. In the past, I have been able to sporadically move it, but it's unpredictable as to when it would respond. Now I can pretty much move it at will. So far nothing on my left foot, but who knows what will happen down the road. I've probably done about 20 hours in the chamber.

I did get my humidifier attachment for my oxygen concentrator, so my next step is to try to start to do overnight oxygen had a lower flow rate, say 2 L and then work from there.
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Postby Merlyn » Fri Jul 22, 2011 11:39 am

Never heard of half of these...


http://www.thickasblood.com/clot_situations.shtml



Conditions which may predispose toward blood clot formation: ■1. Pregnancy
■2. Oral contraceptives (especially when associated with smoking)
■3. Estrogen replacement therapy
■4. Tamoxifen therapy
■5. Surgery
■6. Air travel of more than three hours duration
■7. Prolonged sedentary status or hospitalizaion
■8. Obesity
■9. Systemic illnesses such as lupus
■10. Protein C deficiency
■11. Protein S deficiency
■12. Factor V Leiden mutation
■13. Prothrombin gene mutation
■14. Antithrombin III deficiency
■15. Lupus anticoagulant
■16. Antiphospholipid antibody syndrome
■17. High levels of Factor VIII
■18. High level of Factor IX
■19. High level of Factor X
■20. High level of lipoprotein (a)
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Postby Merlyn » Sat Jul 23, 2011 12:40 pm

http://sleepdisorders.about.com/od/comm ... noring.htm

Snoring has been found to increase the risk of narrowing of the blood vessels within the neck, a phenomenon called carotid atherosclerosis. In a study of 110 patients, the more total sleep time spent snoring the higher the risk of developing the narrowing. It is thought that direct vibratory damage of the carotid arteries within the neck may lead to increased plaque formation within these blood vessels.
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Postby Merlyn » Tue Jul 26, 2011 12:22 pm

I am going to a denture clinic to get tested for structural indications of airway blockage... still having good results with hyperbaric chamber, but simply breathing oxygen is almost as helpful!


http://www.dentalsleepapnea.com/Obstruc ... _Apnea.htm


Some of the most serious chronic diseases of man have been associated with snoring and sleep apnea, including: stroke, hypertension (high blood pressure), myocardial infarction (heart attack), arteriosclerosis (hardening of the arteries), cardiac arrhythmias (irregular pulse), diabetes, gastro-esophageal reflux disorder (GERD), polycythemia vera (thickening of the blood) and others.
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Postby Merlyn » Wed Jul 27, 2011 11:23 am

Sometimes it is hard to assess exactly what I am experiencing because I am very sensitive to diet also. But I do believe that the sensitivity of my feet is much improved, the function of my left hand is slowly slowly improving, I can definitely lift my right arm much easier, I am able to very often now get my left arm up onto the left arm of the wheelchair, something that has been very very difficult. Objectively, my husband is sure that there is far less resistance in my left arm when he is manipulating it. Spasticity is much less for maybe 10 hours after a treatment/dive, but that is not lasting 24 hours and I have now done 25 hours of chamber time.

I am still able to flex my big toe on my right foot, but my left foot is still totally unresponsive to any kind of brain message... I am clueing into a couple of jaw issues. I sometimes put the nose cannula into my mouth and I am finding that I must put my jaw forward to get the proper flow of air down my gullet. I have set up an appointment with my denturist to have him look at structural issues that might be causing sleep apnea. When I breathe in oxygen for about an hour and a half (93% oxygen, 5 L flow from the oxygen concentrator), I can basically watch my hand color change to a healthier pink. And if I do this, I move better at night. I have to get a 50 foot tube for my concentrator so that I can set it up in another room and breathe oxygen at night to see what that does. I have probably seen two dozen dentists in my lifetime, and they have all of course commented on my class III maloccusion, but I do not believe anyone ever warned me that I would be incredibly susceptible to sleep apnea. Aargh matey, I keep wondering why we are all so considered untreatable when nobody ever investigates the overall picture.
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Postby Merlyn » Wed Jul 27, 2011 12:21 pm

How do we know that the blocked veins in the neck are not due to structural issues? This video says that 65%-80% of stroke victims have sleep apnea! I really do appreciate Dr. Code's description of MS as a "slow stroke"!




http://www.facefocused.com/cs_ag2.html
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Postby Merlyn » Sun Jul 31, 2011 11:53 am

I ordered some PQQ, will see what that does.




Ageing Res Rev. 2004 Jul;3(3):265-301.
Brain iron deposition and the free radical-mitochondrial theory of ageing.
Schipper HM.
Abstract
The central hypothesis of this paper states that oxidative stress, augmented iron deposition, and mitochondrial insufficiency in the ageing and degenerating CNS constitute a single neuropathological 'lesion', and that the advent of one component of this triad obligates the appearance of the others. Evidence in support of this unifying perspective is adduced from human neuropathological studies, experimental paradigms of ageing-associated neurological disorders, and a comprehensive model of astroglial senescence. A pivotal role for the enzyme, heme oxygenase-1 (HO-1) in consolidating this tripartite lesion in the ageing and diseased CNS is emphasized. The data are discussed in the context of a revised 'free radical-mitochondrial-metal' theory of brain ageing, and some scientific and clinical implications of the latter are considered.
PMID:
15231237
[PubMed - indexed for MEDLINE]
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Postby Merlyn » Wed Aug 24, 2011 11:35 am

This woman is brilliant. I am still waiting for my home sleep study to be set up, but it is in the works. Went to see another doctor besides my normal GP who thought that my overnight oximeter test was not normal so we are doing further investigation for sleep apnea. Who would've thought that vitamin D was related to sleep apnea and therefore the whole oxygen/restorative sleep/neurological conditions. These are very informative videos, although I wish she had gone more into the relationship between thyroid hormones and vitamin D because they seem to be symbiotic. I could not tolerate sunshine at all for many years, until I got onto the proper dose of T3 (liothyronine). Intolerance to sunshine is often found in fibromyalgia also... iron destroys vitamin D!


http://www.youtube.com/watch?v=h7cbBB1c0IM

http://www.youtube.com/watch?v=1APENOUW ... re=related

http://www.youtube.com/watch?v=_JUq4fph ... re=related

http://www.youtube.com/watch?v=qeb3PtkC ... re=related


http://www.youtube.com/watch?v=YOUybbVO ... re=related
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Postby Merlyn » Wed Aug 24, 2011 11:38 am

Sponsored Links.

Vitamin D and Blood Vessels

Vitamin D is found in small amounts in food, but the vast majority of the vitamin D your body needs comes from sun exposure on your skin, with as little as 10 minutes of sun daily enough to prevent deficiencies. Researchers from Emory University School of Medicine in Georgia presented evidence at the 2011 annual meeting of the American College of Cardiology on the link between vitamin D and blood vessels. They reported that a deficiency of vitamin D, even in otherwise-healthy people, causes stiffer arteries and makes it difficult for blood vessels to relax, leading to impaired vascular function.


Read more: http://www.livestrong.com/article/49617 ... z1VydC7296
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Postby Merlyn » Thu Aug 25, 2011 11:08 am

Mind you, you need vitamin K2 to use vitamin D, and she does not mention that in those videos...

http://naturalfactors.com/ca/en/product ... in-k-and-d

Vitamin D has long been considered a classic nutrient for bone metabolism. It supports bone development and is needed for calcium absorption. Vitamin K & D uses vitamin D3 (cholecalciferol), a natural form of vitamin D that is safer and more biologically active than D2 (ergocalciferol), a synthetic form of vitamin D. Evidence shows that vitamins K2 and D3 work synergistically to improve bone density. Many of the clinical trials examining the effects of K2 on bone density found a much greater effect when vitamins K2 and D3 were given together as opposed to either nutrient alone.

Vitamin D is required for the absorption of minerals such as calcium while vitamin K is needed to direct the minerals to the right place, preventing an inappropriate calcification of soft tissues. Likewise, cells only produce osteocalcin and the matrix Gla protein (MGP) in the presence of vitamin D, but vitamin K is necessary to activate those proteins to do their jobs. There is even evidence to suggest that the safety of vitamin D is dependent on adequate vitamin K and that vitamin D toxicity (which is extremely rare with the D3 form) is actually an induced deficiency of vitamin K2.
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Postby Merlyn » Thu Aug 25, 2011 11:20 am

Vitamin D news
Research at UMDNJ Identifies How Vitamin D Combats MS
16 August 2011
Press release by Rob Forman
University of Medicine and Dentistry of New Jersey

While for years scientists have noted an association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of multiple sclerosis (MS), the mechanism involved has not been established. However new research by Sylvia Christakos, Ph.D., of UMDNJ-New Jersey Medical School (principal investigator) Sneha Joshi (first author, a UMDNJ Ph.D. student), and colleagues (including co-investigator Lawrence Steinman, MD, of Stanford University) appears to have uncovered that process. The study, published in the journal Molecular and Cellular Biology, finds that vitamin D directly terminates the production of a disease-causing protein.

During MS (“EAE” in mice), a damaging protein called interleukin-17 (IL-17) is produced by immune cells in the brain. The investigators, a collaborative team of scientists from the University of Medicine and Dentistry of New Jersey and Stanford University, find that after vitamin D binds to its receptor, the receptor parks itself on the gene that encodes IL-17. By doing so, the receptor occupies a site normally reserved for a <span class="noglossary">protein</span> called NFAT, which is required to turn the <span class="noglossary">gene</span> on. The <span class="noglossary">gene</span> stays off and IL-17 levels plummet.

At the same time, the vitamin D receptor turns on another <span class="noglossary">gene</span>, whose product generates suppressive T cells that combat the destructive action of their IL-17-producing counterparts...

Read rest of press release at njms.umdnj.edu/.

Page last edited: 18 August 2011
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Postby Merlyn » Thu Aug 25, 2011 11:40 am

Just as a comment, twice I have tried to take LDN, and unlike most users of that drug I have had my T cells measured when I take it. For me, LDN totally annihilates my CD8 suppressor cells and it sends me into some form of attack and I get incredibly incredibly spastic and I can't sleep at night due to the bad dreams and constant kicking.
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