Way back in November I sent all of my records and information to Dr. Dake, but I never heard back from him. I thought maybe they had decided to not have me as part of the trials or the procedures he was doing at that time.
Today I decided to email them again and his assistant quickly responded. She told me they didn't have my email address on file. Now they do and I have been on the list since November! Here is what the rest of the email said...
"Thank you for your inquiry regarding our work on blockages of the veins of the head and neck associated with multiple sclerosis. I wish I could talk with you personally to explain our ongoing work, but in order to provide a reply to all, I must respond by email. After careful review at Stanford, we have determined that the initiation of a clinical development program leading to a possible clinical trial will be the next step as we examine the possible risks and benefits of balloon angioplasty with or without venous stenting for patients with multiple sclerosis. This evaluation will start shortly but it is unlikely that, even given a highly positive outcome, we would be initiating any clinical trial before the second half of 2010 at the earliest. In light of these next steps, I am not currently performing the procedure at Stanford.
Please be assured that we will keep your contact information on file and provide appropriate updates of our work on this important issue.
I hope to have the opportunity to speak with you in the future.
Sincerely,
MICHAEL D. DAKE, M.D."
This gives me so much hope! If all goes as planned, I will hopefully be treated after September when the baby is born, late this year or early next year, maybe.
I know there are a lot of maybes and ifs in this, but I am still so excited. This might really happen.
I am a huge fan of breastfeeding, but I am willing to stop early if it means I can get my jugulars fixed! Woohoo! What an exciting year I have ahead of me! =)
1/14/10
Detour in my Quest...
Last week the imaging center, that sounded so excited about testing me at first, decided that they were not interested in testing me for CCSVI. They said they are not a research facility and that the research I gave them was old. It was Dr. Zamboni's original research, does research get outdated after 5 years? Anyway, that news was hard to take because I had waited for two months for them.
Still I had an inward battle between getting tested and having another baby. But little did I know the decision was already made. I found out on Tuesday that I am pregnant. I wouldn't have been able to be tested anyway. My husband and I are both very happy. We are hoping that more paths will be opened in the next year or so and it will hopefully be less of a battle to correct my vascular problems by then.
I "blame" (but not really) the pregnancy on Inclined Bed Therapy. It regulated my menstrual cycle and I have been feeling great. I have never gotten pregnant so easily. I hope my sister B will follow quickly. She just inclined her bed and she has been trying to get pregnant for almost two years. It will be so awesome if it works for her.
So now I get to see what being pregnant while having MS is all about. I honestly don't think it will be too much different than my other pregnancies. I feel I have had these vein inefficiencies all my life and the fatigue I felt with my 2 year old son will probably be about the same, maybe I have a little more "brain damage". Maybe I have no idea what I am talking about, only time will tell and it is so different from person to person.
Still I had an inward battle between getting tested and having another baby. But little did I know the decision was already made. I found out on Tuesday that I am pregnant. I wouldn't have been able to be tested anyway. My husband and I are both very happy. We are hoping that more paths will be opened in the next year or so and it will hopefully be less of a battle to correct my vascular problems by then.
I "blame" (but not really) the pregnancy on Inclined Bed Therapy. It regulated my menstrual cycle and I have been feeling great. I have never gotten pregnant so easily. I hope my sister B will follow quickly. She just inclined her bed and she has been trying to get pregnant for almost two years. It will be so awesome if it works for her.
So now I get to see what being pregnant while having MS is all about. I honestly don't think it will be too much different than my other pregnancies. I feel I have had these vein inefficiencies all my life and the fatigue I felt with my 2 year old son will probably be about the same, maybe I have a little more "brain damage". Maybe I have no idea what I am talking about, only time will tell and it is so different from person to person.
1/6/10
Inclined Bed Therapy
Just a note: Andrew K. Fletcher corrected my analogy in this post, see his comment for more from him. How cool is it that he took the time to comment? He is fast becoming one of my heroes.
About two months ago, I read about Inclined Bed Therapy and it made sense to me, especially in light of CCSVI. By raising the head of your bed by a 5% incline, or 4-6 inch difference from head to foot on a full length bed, you allow gravity to assist your blood circulation.
Andrew K. Fletcher is the "inventor" of this therapy, he uses his resources to spread the word about how beneficial IBT is for everyone, not just those with MS and he gets nothing in return.
If you can imagine a flat table with tubing in the shape of a U laying on top. If you were to pump water though the tubing, it would take lots of effort to get the water all the way to the top side of the U. Now incline the table by 5%, gravity will help the water roll effortlessly to the top of the tubing. Your veins work the same way.
I feel raising the head of my bed has had the most benefit on my health since I change my diet and I am tempted to say it has had more effect, though I believe nutrition is very important. I am no longer fatigued most of the day, I don't have to rest at 4:00pm just so I can make dinner and guess what? I stay up to bring in the New Year! Two months ago I was heading to bed at 9:30 every night.
So here is what I did:
I had bed risers in my garage, the ones stores sell so that you can make your bed higher to store stuff underneath. I had my husband help me lift the bed while I put two of them in place at the head of the bed. Then I measured to see how much of a lift they gave. Because of the placement of the legs of the metal frame, beds can vary in head height, even using the same bed risers. Mine was a perfect 6".
Andrew suggests you start with 4" to get used to it. To do that you can just put a 2 by4 under the legs at the foot of your bed until you are ready to go all the way.
Two weeks ago, my 19 year old sister A had an MRI and it showed a lesion. It is most likely the start of MS, a very scary thing for our whole family, that would make it 3 daughters with MS, crazy! I immediately raised the head of her bed with the two left over bed risers. She is sleeping deeper, feeling better and wakes up in the morning ready for the day.
I am trying to convince my sister Z (who also has MS) to incline the head of her bed, but she is worried that her husband's space with be disrupted. To this I would like to respond: Your husband loves you! He wants you to be healthy and happy. I am sure that this little sacrifice on his part will help you lift out of a lot of the fatigue you have been experiencing. I know it sounds too good to be true and you are a doubter, but I bet he will try it if you ask him to.
Here is a list of benefits I found here:
About two months ago, I read about Inclined Bed Therapy and it made sense to me, especially in light of CCSVI. By raising the head of your bed by a 5% incline, or 4-6 inch difference from head to foot on a full length bed, you allow gravity to assist your blood circulation.
Andrew K. Fletcher is the "inventor" of this therapy, he uses his resources to spread the word about how beneficial IBT is for everyone, not just those with MS and he gets nothing in return.
If you can imagine a flat table with tubing in the shape of a U laying on top. If you were to pump water though the tubing, it would take lots of effort to get the water all the way to the top side of the U. Now incline the table by 5%, gravity will help the water roll effortlessly to the top of the tubing. Your veins work the same way.
I feel raising the head of my bed has had the most benefit on my health since I change my diet and I am tempted to say it has had more effect, though I believe nutrition is very important. I am no longer fatigued most of the day, I don't have to rest at 4:00pm just so I can make dinner and guess what? I stay up to bring in the New Year! Two months ago I was heading to bed at 9:30 every night.
So here is what I did:
I had bed risers in my garage, the ones stores sell so that you can make your bed higher to store stuff underneath. I had my husband help me lift the bed while I put two of them in place at the head of the bed. Then I measured to see how much of a lift they gave. Because of the placement of the legs of the metal frame, beds can vary in head height, even using the same bed risers. Mine was a perfect 6".
Andrew suggests you start with 4" to get used to it. To do that you can just put a 2 by4 under the legs at the foot of your bed until you are ready to go all the way.
Two weeks ago, my 19 year old sister A had an MRI and it showed a lesion. It is most likely the start of MS, a very scary thing for our whole family, that would make it 3 daughters with MS, crazy! I immediately raised the head of her bed with the two left over bed risers. She is sleeping deeper, feeling better and wakes up in the morning ready for the day.
I am trying to convince my sister Z (who also has MS) to incline the head of her bed, but she is worried that her husband's space with be disrupted. To this I would like to respond: Your husband loves you! He wants you to be healthy and happy. I am sure that this little sacrifice on his part will help you lift out of a lot of the fatigue you have been experiencing. I know it sounds too good to be true and you are a doubter, but I bet he will try it if you ask him to.
Here is a list of benefits I found here:
Benefits To You ...
--- Teenager reports all pimples went in two weeks (verified).--- MS, Parkinson's, Hashimoto's and Arthritis improvements.
--- Huge detox to the body, this has been verified via client response to lymphatic massage (clients on IBT no-longer display symptoms of toxin flush) when they are sleeping on an incline.
--- Sleep right through the night. Breathing problems eliminated, sleep apnea, snoring, cot deaths resolved. This is absolutely amazing and will save the lives of thousands of people.
--- Provides Fascia Trauma Unwinding - Check the Myofascial Release menu. Absolutely incredible how this function of Inclined Bed Therapy operates. If you want to feel young, pain free, energized and in top health, give this a go.
--- Bones actually grow longer, you will grow taller.
--- Balances the pelvic girdle and addresses Scoliosis/Kyphosis/Lordosis and Dowager's hump problems.
--- Never be cold again in Winter, IBT keeps the body metabolism ticking along. You will get hotter in Summer, so take off the extra covers.
--- Clients with high blood pressure have seen their blood pressure normalize after a few months. Give it a go !
--- Nightly dreams become lucid (may be a product of lower toxins in the body and elevated oxygen levels).
--- Your heart wont work as hard, now this is going to extend life 10, may be 20 years, may be more ? (Just do it)
--- Oedema problems resolved. Yep, medical science got it wrong telling you to raise your feet, raise from your head and be startled by the results.
--- The most common report is that sleeping on an incline feels more natural than sleeping flat. People after sleeping inclined for a few months are never happy going back to sleeping horizontal. This is very addictive, you'll actually enjoy going to bed.
--- I have monitored several clients who used to spend up to $40 per month on general headache and pain killing drugs. They now have extra savings as they no-longer suffer head-aches or pain. Ooops! Mr Pharmaceutical won't like this. This may very well affect Pharmaceutical profits. Spread the word, because no one else will.
--- A message to smokers! For the first few weeks, may be a month, you will start coughing when you get out of bed in the morning, and this may pass after half an hour or so. This is IBT repairing your lungs. The increased humidity in your lungs and respiration improvements will provide an opportunity for your body to help repair damage done from smoking. IBT will also make it easier to kick the habit and for you to enter the wellness zone.
--- The best part is, it is free. Just a few blocks of wood under your bed. Always start out at 3 or 4 inches, then work up to 6 to 8 inches incline.
Personally, I no longer have to sit at the edge of my bed before I rise. I used to "black out" upon standing. My menstrual cycle has regulated and I actually feel normal most days! I had forgotten how that felt. I haven't has this much energy last through out the day in 4 years!
Happy Healing Everyone!
My Upcoming MRV
I am working with an imaging center here in Utah to get tested for CCSVI. I gave them Dr. Haacke's protocol and they are working on getting it approved and set up. It should be ready by late next week. I am excited and impatient, but very happy that they are doing the correct protocol and obtaining the needed software. I want it done right or else it is just a waste of my money, which is in short supply right now.
It seems the type of doctor best suited for the job is an Interventional Radiologist. To find one to talk to near you, visit this website : http://www.sirweb.org/
I really hope that the process of bringing CCSVI to light and getting treatment accessible will happen rapidly. My big question is why haven't we seen anything on the new inthe States about this? I guess I need to use my connections and do it myself! =)
It seems the type of doctor best suited for the job is an Interventional Radiologist. To find one to talk to near you, visit this website : http://www.sirweb.org/
I really hope that the process of bringing CCSVI to light and getting treatment accessible will happen rapidly. My big question is why haven't we seen anything on the new inthe States about this? I guess I need to use my connections and do it myself! =)
11/24/09
Canada's MS Society Calls for Research!
So Canada's MS Society is now backing research for CCSVI, now it is time for the US to follow suite!
http://www.theglobeandmail.com/news/national/ms-group-calls-for-research-into-potentially-paradigm-shifting-theory/article1374954/
http://www.theglobeandmail.com/news/national/ms-group-calls-for-research-into-potentially-paradigm-shifting-theory/article1374954/
CTV story on CCSVI
This Canadian Documentary is really well done and explains CCSVI wonderfully.
http://watch.ctv.ca/news/w5/the-liberation-treatment/
I am so excited about this CCSVI prospect. I have an appointment set up with a vascular surgeon tomorrow. The protocol for the ultrasound and MRI are a little different than the standard, some technicians who have not been trained in it are not finding the stenosises (sp?). So bringing in these protocols is very important. We do not want everyo9ne to rush in and get tested by an untrained radiologist and find nothing when there is something there. This would make the theory seem wrong, even though Dr. Zamboni and Dr. Dake have found it in 100% of MS patients.
You can find the protocols here:
The ultrasound protocol is here: http://csvi-ms.net/en/content/how-perform-doppler-examination-multiple-sclerosis-patient-dr-simka
And the MRI protocol is here: http://www.ms-mri.com/protocol.php and more detailed here: http://www.ms-mri.com/docs.php
I dream about this and think about it all day. I feel like I can live a normal life if these veins are corrected. The only disease progression Dr. Zamboni's patients had was when the vein reclosed. That is why Dr. Dake uses stents, they keep the veins permanently open, whereas the ballooning can be temporary.
I can't wait until tomorrow. I am prepared to stage a sit down in the doctor's office if he says he can't help me. I will not give up. I am confident that I have a stenosis or two and that it can be corrected and that it will stop the progression of MS.
http://watch.ctv.ca/news/w5/the-liberation-treatment/
I am so excited about this CCSVI prospect. I have an appointment set up with a vascular surgeon tomorrow. The protocol for the ultrasound and MRI are a little different than the standard, some technicians who have not been trained in it are not finding the stenosises (sp?). So bringing in these protocols is very important. We do not want everyo9ne to rush in and get tested by an untrained radiologist and find nothing when there is something there. This would make the theory seem wrong, even though Dr. Zamboni and Dr. Dake have found it in 100% of MS patients.
You can find the protocols here:
The ultrasound protocol is here: http://csvi-ms.net/en/content/
And the MRI protocol is here: http://www.ms-mri.com/
I dream about this and think about it all day. I feel like I can live a normal life if these veins are corrected. The only disease progression Dr. Zamboni's patients had was when the vein reclosed. That is why Dr. Dake uses stents, they keep the veins permanently open, whereas the ballooning can be temporary.
I can't wait until tomorrow. I am prepared to stage a sit down in the doctor's office if he says he can't help me. I will not give up. I am confident that I have a stenosis or two and that it can be corrected and that it will stop the progression of MS.
11/14/09
Potential MS "Cure"
This was on the local news (abc4) last night. This procedure uses intense chemotherapy to "reset" the immune system. 90% of those who had the procedure had no MS symptoms (or at least no progression) 1-3 years later.
This is a great prospect, but I still wonder if it is an actual cure. Relief of all symptoms for years with out additional medications is incredible though. I do worry about the effects of chemo, particularly on the reproductive system. I am not done having kids, so I feel this is not an option for me.
I still see CCSVI as a very likely cause and if that can be fixed then maybe chemo would not be necessary.
This is a great prospect, but I still wonder if it is an actual cure. Relief of all symptoms for years with out additional medications is incredible though. I do worry about the effects of chemo, particularly on the reproductive system. I am not done having kids, so I feel this is not an option for me.
I still see CCSVI as a very likely cause and if that can be fixed then maybe chemo would not be necessary.
11/10/09
Inflammation
I just read that during times of inflammation, the blood brain barrier becomes more permeable, which makes avoiding inflammation all the more important in helping to keep MS symptoms at bay.
I enjoyed this article about things that cause inflammation:
http://www.womentowomen.com/inflammation/causes.aspx, a recommended read if you are serious about lessening your inflammation. Also more specific diet suggestions for reduce inflammation: http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx
Just a quick overview:
Diet is huge, too much insulin causes inflammation, so low carb diets are helpful.
A proper balance of omega-3 and omega-6 oils is crucial.
Avoiding food sensitivities helps.
Intestinal inflammation (which more of us have than we realize have) can be helped by probiotics.
Stress increases cortisol levels which affects insulin and increases inflammation.
Hormonal imbalances can also affect it. This article only mentioned menopause, but I am still interested in learn how hormonal changes in pregnancy and menstruation could affect inflammation.
Environmental toxins can contribute.
Panic attacks or being severely frightened (dream or other wise) causes the blood vessels to dilate. Could a vein malformation and fright cause more blood to be refluxed? Probably.
I enjoyed this article about things that cause inflammation:
http://www.womentowomen.com/inflammation/causes.aspx, a recommended read if you are serious about lessening your inflammation. Also more specific diet suggestions for reduce inflammation: http://www.womentowomen.com/inflammation/naturalantiinflammatories.aspx
Just a quick overview:
Diet is huge, too much insulin causes inflammation, so low carb diets are helpful.
A proper balance of omega-3 and omega-6 oils is crucial.
Avoiding food sensitivities helps.
Intestinal inflammation (which more of us have than we realize have) can be helped by probiotics.
Stress increases cortisol levels which affects insulin and increases inflammation.
Hormonal imbalances can also affect it. This article only mentioned menopause, but I am still interested in learn how hormonal changes in pregnancy and menstruation could affect inflammation.
Environmental toxins can contribute.
Panic attacks or being severely frightened (dream or other wise) causes the blood vessels to dilate. Could a vein malformation and fright cause more blood to be refluxed? Probably.
11/9/09
More on CCSVI
I spent this morning calling different doctors in my area and it seems this is so new and specialized that they are referring me to Dr. Dake at Stanford University. I will be filling out the proper forms to be evaluated by him.
This website: www.ms-mri.com lists collaborators that are currently testing and treating CCSVI. It also has a cool video of what the veins might look like.
This link: http://www.thisisms.com/forum-40.html is a forum dedicated to those who have been treated for CCSVI or are planning on doing so.
This link: http://www.bnac.net/?page_id=496 is a study they are doing in Buffalo. I have emailed them and I am still waiting on hearing back. It sounds like this study is geared toward testing for it and possibly not treating it. We'll see.
I think that someday this will be a routine test and procedure they do when looking at MS. I want to be one who benefits from it now and not wait until it is "proven effective." I have confidence it will be.
This website: www.ms-mri.com lists collaborators that are currently testing and treating CCSVI. It also has a cool video of what the veins might look like.
This link: http://www.thisisms.com/forum-40.html is a forum dedicated to those who have been treated for CCSVI or are planning on doing so.
This link: http://www.bnac.net/?page_id=496 is a study they are doing in Buffalo. I have emailed them and I am still waiting on hearing back. It sounds like this study is geared toward testing for it and possibly not treating it. We'll see.
I think that someday this will be a routine test and procedure they do when looking at MS. I want to be one who benefits from it now and not wait until it is "proven effective." I have confidence it will be.
11/7/09
CCSVI and MS
So I woke up this morning at 5am, unable to turn off my brain. I just keep thinking about this CCSVI in MS. I think it answers a lot of questions I have had. I hope I can convey my thoughts correctly and make sense of all this medical lingo.
CCSVI is short for Chronic cerebrospinal venous insufficiency, basically it is a malformation of a vein, usually in jugular veins.
A doctor in Italy noticed that 100% of the patients with MS have CCSVI and the control group, made up of healthy patients and even some with neurological issues, like Parkinson's, did not have CCSVI. This has been confirmed in the Untied States as well. This is really new and in the process of being studied, but they have been able to fix these veins with stents and are seeing great results; but so far, long term results do not currently exist.
So this doctor Zamboni theorizes that once blood reaches the brain it gets "trapped" or "back-lashed" because of the malformed vein. This leaves iron and other toxic deposits on the brain, actually causing the brain/nerve damage. This is a potential weakening factor in the blood-brain barrier.
Here is a quote I found that I agree with: "The report on the CCSVI meeting. They are 500 for 500 in Italy and both Stanford and Buffalo have confirmed that every MS patient they have examined has CCSVI. We can now say without any reasonable doubt that MS is primarily a vascular disease and secondarily an autoimmune disease. Any reasonable treatment for MS must address BOTH the vascular component and the autoimmune component. The great value and success of the nutritional strategies are because they treat both components."
In response to that post, someone left this comment: "I agree, to a certain point. Jeff was stable and in "remission" on the swank diet and the endothelial health program I devised for him with the input of Dr. John Cooke of Stanford. However, even after living a low fat, healthy and active lifestyle with plenty of vitamin D, antioxidants, and proteolytic enzymes...he still had two closed internal jugular veins, and reflux of damaging blood into his brain. He has most likely had this his whole life. He felt almost an immediate relief of fatigue and heat intolerance after the stents were put in, and four months later, he continues to heal. Less bladder urgency, less spasms, much better sleep, much clearer head. He will continue to remain on his program (just as a heart attack or stroke victim should)....but his stenosis would not have gone away on its own, I'm afraid to say. Diet, exercise, nutrition, etc can help keep blood moving, but it appears (in all the cases we've seen so far) only endovascular surgery can remove a stenosis. cheer"
I agree with both of these statements. These malformed veins were formed in embryo, whether due to genetics or embryonic problems. I feel that proper diet is essential to lessen these "back washes" of blood, but possibly no amount of nutrition can fix a birth defect, a stent could be the best bet for stopping future reflux.
So here are some of the questions that have left me a little baffled that have been potentially answered by CCSVI (again I will state that all of these things are my opinion and interpretation):
When scientists "induce" MS in mice and then treat them with different experimental drugs or supplements they get amazing results, but when testing those same substances on human MS patients the results have been much less amazing and generally left aside. The answer: CCSVI. They have not "induced" a vein blockage in the mice leaving many variables unresolved.
Doctors have these "great" drugs for auto-immune disorders and yet patients with MS still continue to decline while on them. The answer: CCSVI. The vein malformations are not addressed, the damage is still occurring because of this.
Why do we see MS so often in families when supposedly there are only slight genetic markers? The answer: CCSVI. Maybe these "birth defects" are more genetic, or have to do with a specific deficiency that the mother has.
Why me? I have always felt that I have eaten healthier than most standard Americans. I have never smoked, drank alcohol or used drugs, I have even never had caffeinated beverages, well maybe one in my whole life. My dad is a chiropractor and has tried his hardest to provide us with the healthier alternatives. The answer: CCSVI. This is something I was born with and it is now finally causing problems after a lifetime of toxic build-up on the brain.
So what can one do while they are waiting to be tested and treated for this?
This is what wikipedia says: "Being a physical flow problem is expected that Occupational hygiene practices, like Ergonomics could reduce the consequences of the reflux, but again, no studies exist to date. Endothelial disrupters (saturated fats, cigarette smoking, heavy metals, excessive alcohol, toxins, EBV, etc) are dangerous in this condition."
As stated previously, I feel diet is huge. Getting rid of the junk in your diet is imperative. If blood is going to back-splash on my brain than I want it to be the cleanest blood I can make it.
There are lots of diets that claim to help MS (Raw, Swank, Best Bet Diet, Ph Diet, Whole Foods), and personally I believe them, but I think it comes down to three specific things, the elimination of all saturated and processed or cooked oils, getting rid of toxins and excess chemicals in the foods we eat and increasing vegetable and fruit intake, which I feel are life, they heal and cleanse, two things that bread and meat just can't do.
This website, www.mscures.com, has very interesting things to say about oils and claims that by eliminating them you can cure your MS. I feel this is because of CCSVI. Your veins will be healthier and not get as clogged if these bad fats are avoided. By the way, ALL processed foods use these bad fats, sorry, no crackers, no bread, no store bought salad dressings.
I also think that good fats are very important! Don't avoid all fats and oils just because they are fats and oils. Cold pressed, virgin oils actually help lessen strokes and heart attacks, improve you cholesterol and most importantly, YOUR BRAIN NEEDS GOOD FATS TO WORK AND REGROW.
Exercise is also very important for circulation and it triggers the chemicals that help regrow myelin.
CCSVI is short for Chronic cerebrospinal venous insufficiency, basically it is a malformation of a vein, usually in jugular veins.
A doctor in Italy noticed that 100% of the patients with MS have CCSVI and the control group, made up of healthy patients and even some with neurological issues, like Parkinson's, did not have CCSVI. This has been confirmed in the Untied States as well. This is really new and in the process of being studied, but they have been able to fix these veins with stents and are seeing great results; but so far, long term results do not currently exist.
So this doctor Zamboni theorizes that once blood reaches the brain it gets "trapped" or "back-lashed" because of the malformed vein. This leaves iron and other toxic deposits on the brain, actually causing the brain/nerve damage. This is a potential weakening factor in the blood-brain barrier.
Here is a quote I found that I agree with: "The report on the CCSVI meeting. They are 500 for 500 in Italy and both Stanford and Buffalo have confirmed that every MS patient they have examined has CCSVI. We can now say without any reasonable doubt that MS is primarily a vascular disease and secondarily an autoimmune disease. Any reasonable treatment for MS must address BOTH the vascular component and the autoimmune component. The great value and success of the nutritional strategies are because they treat both components."
In response to that post, someone left this comment: "I agree, to a certain point. Jeff was stable and in "remission" on the swank diet and the endothelial health program I devised for him with the input of Dr. John Cooke of Stanford. However, even after living a low fat, healthy and active lifestyle with plenty of vitamin D, antioxidants, and proteolytic enzymes...he still had two closed internal jugular veins, and reflux of damaging blood into his brain. He has most likely had this his whole life. He felt almost an immediate relief of fatigue and heat intolerance after the stents were put in, and four months later, he continues to heal. Less bladder urgency, less spasms, much better sleep, much clearer head. He will continue to remain on his program (just as a heart attack or stroke victim should)....but his stenosis would not have gone away on its own, I'm afraid to say. Diet, exercise, nutrition, etc can help keep blood moving, but it appears (in all the cases we've seen so far) only endovascular surgery can remove a stenosis. cheer"
I agree with both of these statements. These malformed veins were formed in embryo, whether due to genetics or embryonic problems. I feel that proper diet is essential to lessen these "back washes" of blood, but possibly no amount of nutrition can fix a birth defect, a stent could be the best bet for stopping future reflux.
So here are some of the questions that have left me a little baffled that have been potentially answered by CCSVI (again I will state that all of these things are my opinion and interpretation):
When scientists "induce" MS in mice and then treat them with different experimental drugs or supplements they get amazing results, but when testing those same substances on human MS patients the results have been much less amazing and generally left aside. The answer: CCSVI. They have not "induced" a vein blockage in the mice leaving many variables unresolved.
Doctors have these "great" drugs for auto-immune disorders and yet patients with MS still continue to decline while on them. The answer: CCSVI. The vein malformations are not addressed, the damage is still occurring because of this.
Why do we see MS so often in families when supposedly there are only slight genetic markers? The answer: CCSVI. Maybe these "birth defects" are more genetic, or have to do with a specific deficiency that the mother has.
Why me? I have always felt that I have eaten healthier than most standard Americans. I have never smoked, drank alcohol or used drugs, I have even never had caffeinated beverages, well maybe one in my whole life. My dad is a chiropractor and has tried his hardest to provide us with the healthier alternatives. The answer: CCSVI. This is something I was born with and it is now finally causing problems after a lifetime of toxic build-up on the brain.
So what can one do while they are waiting to be tested and treated for this?
This is what wikipedia says: "Being a physical flow problem is expected that Occupational hygiene practices, like Ergonomics could reduce the consequences of the reflux, but again, no studies exist to date. Endothelial disrupters (saturated fats, cigarette smoking, heavy metals, excessive alcohol, toxins, EBV, etc) are dangerous in this condition."
As stated previously, I feel diet is huge. Getting rid of the junk in your diet is imperative. If blood is going to back-splash on my brain than I want it to be the cleanest blood I can make it.
There are lots of diets that claim to help MS (Raw, Swank, Best Bet Diet, Ph Diet, Whole Foods), and personally I believe them, but I think it comes down to three specific things, the elimination of all saturated and processed or cooked oils, getting rid of toxins and excess chemicals in the foods we eat and increasing vegetable and fruit intake, which I feel are life, they heal and cleanse, two things that bread and meat just can't do.
This website, www.mscures.com, has very interesting things to say about oils and claims that by eliminating them you can cure your MS. I feel this is because of CCSVI. Your veins will be healthier and not get as clogged if these bad fats are avoided. By the way, ALL processed foods use these bad fats, sorry, no crackers, no bread, no store bought salad dressings.
I also think that good fats are very important! Don't avoid all fats and oils just because they are fats and oils. Cold pressed, virgin oils actually help lessen strokes and heart attacks, improve you cholesterol and most importantly, YOUR BRAIN NEEDS GOOD FATS TO WORK AND REGROW.
Exercise is also very important for circulation and it triggers the chemicals that help regrow myelin.
10/30/09
My Story...So Far
I feel this blog will be a good way for me to keep track of all I am learning about ways to help multiple sclerosis and provide a way to share those things with others who are interested.
I am not a doctor, I am not a nutritionist or herbalist, I am just a girl who is passionate about stopping the progression of this disease.I welcome comments and advise. I hope to never miss out on an opportunity to learn.
My first introduction to multiple sclerosis came when I was quite young. My Aunt Wendy was diagnosed when I was probably 8. I didn't understand completely but watched over the years as her abilities, both physical and mental, declined. After a divorce and really nowhere else to go, because she couldn't work enough to make a living, she came to live with us, by then I was in high school, she was still walking and I would watch her push her sitting walker around the block day after day, resting every 20 feet or so, trying to stay cool with neck wraps, but determined to keep the abilities she had left. Depression was a big problem and though we loved her, there were times that it was hard to enjoy her.
She remarried and has a husband who it doing his best, but also has health problems. About 4 years ago she fell and broke her ankle, this left her in a wheelchair. She is currently in a nursing home, too weak to put any weight on her legs, but as sweet as anyone could be in her situation.
She tried lots of things over the years, but because the internet was not as available as it is now, she did not learn the things that I am learning. Several years of Avonex, a low fat diet, blue green algae and even Reliv didn't seem to slow the progression.
In March of 2009, I moved my young family just 30 miles south. The move was very stressful for me. I felt like I was doing everything on my own. Curtis, my husband, worked a lot and commuted a lot and I didn't know how to ask for help when I needed it. I would try to pack during the day while Curtis was a work and I had no energy. I remember calling him one day, laying on the ground crying because I just didn't have the energy to do anything else. I hated that feeling and didn't understand it, but I carried on.
Our new house isn't too far from the railroad tracks and the noise of the train, stress or moving and worrying about whether we bought the right house left me with over 2 weeks of sleepless nights. Even after I started sleeping through the night I still couldn't get over that exhaustion. Because I felt so tired, I went to the doctor for help. He check my thyroid and iron levels and said everything was just fine. Well I didn't feel fine! While I was helping Curtis trim a tree, I closed one eye because of the bright sun and noticed that my left eye was blurry. I did research on the internet and decided I really needed to see an eye doctor. He was pretty sure it was optic neuritis and advised that I see a neurologist, because of the possibility of it being MS.
After debating, mostly because of the cost of an MRI, I saw the neurologist and my MRI showed several lesions. He said he is 95% certain that multiple sclerosis will be the diagnosis, but it is only confirmed when I have a second exacerbation. I took this head-on determined to never have another exacerbation.
Because I still want to have a couple more children and am currently trying to get pregnant, my neuro said that the disease-modifying drugs are not an option. I had watched my aunt take these medications without really being helped by them and already felt I wanted to approach it differently, though I had heard that there have been advances in the meds, still, ask anyone, these expensive drugs only slow the disease, if they do anything thing at all for certain individuals. If you base your treatment solely on these meds, you will continue to decline. My goal here is not to say stop taking them. If they are helping, that is wonderful, I just want to bring awareness to things you can do in addition to help in the whole process of being and living well.
I am not a doctor, I am not a nutritionist or herbalist, I am just a girl who is passionate about stopping the progression of this disease.I welcome comments and advise. I hope to never miss out on an opportunity to learn.
My first introduction to multiple sclerosis came when I was quite young. My Aunt Wendy was diagnosed when I was probably 8. I didn't understand completely but watched over the years as her abilities, both physical and mental, declined. After a divorce and really nowhere else to go, because she couldn't work enough to make a living, she came to live with us, by then I was in high school, she was still walking and I would watch her push her sitting walker around the block day after day, resting every 20 feet or so, trying to stay cool with neck wraps, but determined to keep the abilities she had left. Depression was a big problem and though we loved her, there were times that it was hard to enjoy her.
She remarried and has a husband who it doing his best, but also has health problems. About 4 years ago she fell and broke her ankle, this left her in a wheelchair. She is currently in a nursing home, too weak to put any weight on her legs, but as sweet as anyone could be in her situation.
She tried lots of things over the years, but because the internet was not as available as it is now, she did not learn the things that I am learning. Several years of Avonex, a low fat diet, blue green algae and even Reliv didn't seem to slow the progression.
In March of 2009, I moved my young family just 30 miles south. The move was very stressful for me. I felt like I was doing everything on my own. Curtis, my husband, worked a lot and commuted a lot and I didn't know how to ask for help when I needed it. I would try to pack during the day while Curtis was a work and I had no energy. I remember calling him one day, laying on the ground crying because I just didn't have the energy to do anything else. I hated that feeling and didn't understand it, but I carried on.
Our new house isn't too far from the railroad tracks and the noise of the train, stress or moving and worrying about whether we bought the right house left me with over 2 weeks of sleepless nights. Even after I started sleeping through the night I still couldn't get over that exhaustion. Because I felt so tired, I went to the doctor for help. He check my thyroid and iron levels and said everything was just fine. Well I didn't feel fine! While I was helping Curtis trim a tree, I closed one eye because of the bright sun and noticed that my left eye was blurry. I did research on the internet and decided I really needed to see an eye doctor. He was pretty sure it was optic neuritis and advised that I see a neurologist, because of the possibility of it being MS.
After debating, mostly because of the cost of an MRI, I saw the neurologist and my MRI showed several lesions. He said he is 95% certain that multiple sclerosis will be the diagnosis, but it is only confirmed when I have a second exacerbation. I took this head-on determined to never have another exacerbation.
Because I still want to have a couple more children and am currently trying to get pregnant, my neuro said that the disease-modifying drugs are not an option. I had watched my aunt take these medications without really being helped by them and already felt I wanted to approach it differently, though I had heard that there have been advances in the meds, still, ask anyone, these expensive drugs only slow the disease, if they do anything thing at all for certain individuals. If you base your treatment solely on these meds, you will continue to decline. My goal here is not to say stop taking them. If they are helping, that is wonderful, I just want to bring awareness to things you can do in addition to help in the whole process of being and living well.
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