0n August22, 2019 I received the following e-mail.
« Sent: Thursday, August 22, 2019 11:51 PM
To: imagoview@hotmail.com <imagoview@hotmail.com>
Subject: breath of fresh air/my hero
Anna,
I would like to take the time to tell you how GRATEFUL I am to you for continually blogging about MS.
I was diagnosed in 2015 with "MS" by MRI (brain, cspine and tspine) showing lesions "consistent with demylenation". My first girl was about 6months old. I had (what I would call) my frist (life altering) flare approximately 1 year ago (my 2nd daughter was 16mo old).
I first found your blog when researching CCSVI and other non-mainstream treatments after watching the film Living Proof.
When I read the first paper I found about the central vein sign and the idea of the pathophysiology of MS being vascular, I cried and cried. It made SO MUCH SENSE. Answers to questions my (MULTIPLE) neurologist(s) could NOT answer.
I searched again a few months ago to see if Dr. Terry Wahls had venoplasty procedure and there was your blog again with an OUTSTANDING post.
LOOOOOOOOONG story short, I found you again today when I clicked on the bookmark I must have made (at my last visit) to see if you've still been writing.
HA! have you been writing.
GIRL, you are my hero.
I read your post from 8/19/19. Brought me to tears AGAIN. I was literally having this conversation with my girlfriends 2 weeks ago.
Many of the things I imagined I would write after having venoplasty myself in Dec 2018, are right there on your blog (as well as Joan Beal's blog).
When I grow up (i'm currently 38) I would like to be you.
In your January 21, 2015 post, you eluded to a paper you were writing.
I have dreams about getting accepted into a PhD program for my thesis on The Mother and MS: Why we get "better" and then have a flare.
But seriously, why do women get "better" during their 2nd trimester of pregnancy? THEIR BLOOD VOLUME DOUBLES?!?! Duh. It's a scientific fact.
I started this email to you before I started searching for said paper.
I will look once I send this to you.
Longer story even longer.
Many of my symptoms that that disappeared after the procedure in Dec have slowly returned (I ended up with DVTs in BOTH of my IJVs).
I'm heading to Poland (https://ccsvi-clinic.com/en/about-clinic) Sept 7 to have a more comprehensive look at my venous system. They will do some blood work to look at bacteria/viral illnesses too.
Anyway, I felt I had to reach out to you. I have done LOTS and LOTS of reading on all the topics you have posted about over the years but very little writing. I am interested in talking further with you about how I can help at all.
Sincerely,
Christina Willman
Who is Christina Willman?
In her own words.
« I am not a doctor. I am a Physician Assistant by training (Masters Degree in Physician Assistant studies). Are you familiar with the profession at all? In the US we are now grouped into what is called Advanced Practice Provider's along with Nurse Practitioners (RNs who have a masters degree in nursing).
Anyway, I live in Arizona and can have a DEA license to prescribe medication. I've worked in the orthopedic surgery specialty for 13 years.
Although I've spent A LOT of time researching MS since my official diagnosis is 2015, and now vascular topics, I definitely have to admit I don't know a lot about neuro and vascular stuff.
Once I heard about a possible link of MS to vascular, I've been on a rampage to understand more.
Getting back to the medicine.
Venous smooth muscle is thinner in the the vessel wall than in an artery, which is why the artery is thicker and more rigid (can hold a stent better, interesting point). »
Back Cure Enigmas. Christina’s healing approach is ideal. She analyzes her own symptoms, she reads and reads with an open mind, does not succumb to dogma, is pro-active (the earlier one stops the MS process, the more likely the recovery) and seeks expert advice and feedback every step of the way. One of her original ideas which could serve MSers very well.
Christina Willman
Tue 8/27/2019
Anna,
« Another interesting thing I thought you might find interesting.
Might be interesting for MSers to talk to their neurologist or primary care doctor.
Backstory:
I have been prescribing Flomax for my dad for over a year so he can urinate better. It works on the prostate but also relaxes smooth muscle to improve urine flow.
One day I got to thinking, hmmm maybe I should try Flomax myself.....
Well, I went to see my primary care doctor (who is awesome and knows I'm off the reservation and he'll try things I suggest as I've researched most things to death) and asked him about it (really just a vasodilator in general).
He wasn't so sure about trying flomax but said he would be up for trying a different vasodilator.
Amlodipineis a calcium channel blocker used for angina (chest pain caused by constriction of the heart vessels). It relaxes smooth muscle by blocking calcium channels.
Boom. Winner. It helps the heaviness in my legs and back as well as my overall fatigue! He prescribed me 2.5mg to take daily. A couple times I've taken 2 pills (so 5mg) and it's AWESOME! I'm going to ask him if I can start 5mg/day since the adult dose is 5-10mg daily. The negative effects are dizziness and hypotension (drop in blood pressure).
Anyway, I thought you might find it to be another interesting topic to look into. »
Me again : I did ask my MD about prescribing Amlodipine, though I wasn’t surprised by her response. I came to see the MD because I had injured my arm (turns out it was broken). I had taken a mild relaxant to sleep the evening before. Usually this weakens my legs so I resolved to be very cautious the next morning. After beginning my toilette, I woke up falling on the edge of the bidet. This is bad, frightening news. I didn’t slip or trip, I simply blanked out. I have low blood pressure (90 over 60), did I faint ? Anyway, I am now 71 and starting just this year seem unable to judge accurately my capabilities. Apparently older people tend to fall because of the medication they take. So that sounds like me now which means I’ll never take another tranquilizer or sleeping pill. (Cannabis would probably be a good solution to relax the vascular/muscular complex which is why I occasionally take a « relaxant », but here in France it is illegal. Hmm, I could cultivate the plant in my garden ?) Anyway, my doctor pointed out that Amlodipine lowers blood pressure and I already have low blood pressure. Given the recent, unexplained fall, that sounds like a bad idea FOR ME. Christine is 38, I am 71, that’s a big difference and her MS manifested recently. Given her dynamic, intelligent approach I believe she has every reason to find effective treatments.
Again, rather than embark on a therapy without consulting an « expert », she visited an acupuncturist to know of my TENS acupressure self treatment was a good idea.
DATE :
Side note, I got a TENS unit and am hoping to see an acupuncturist soon to help with with placement of the electrodes as you describe in your blog post.
Would it be OK if I just try to put them where you describe? I have been researching the meridians on the website you recommend but don't feel super confident.
One of my first symptoms in 2013 was drop foot in my left after running which had progressed and now happens walking shorter distances, especially in the heat (however this went away after my venoplasty in 2018) so I'd really like to work on the dorsiflexor ».
So, I'm not sure if I see improvement in my symptoms because of the improved blood flow and/or there is some action on the spasms of the venous vessel, I don't know.
Which brings me to what you wrote on you blog about the vascular spasms. I don't think that was incorrect at all! I think it's a GREAT point and is another one of the things that should be studied further!
TENS: I got one on Amazon after reading (and re-reading) your posts about acupressure/acupuncture and using the TENS unit.
I saw an accupuncturist Thursday for the first time ever. He was VERY intrigued by my story and gave me a brief overview of the meridians. I used the TENS unit that night on GB 34 and used Kidney 2 (per his recommendation) as the complementary (Yin or Yang...?) he said the Kidney 1 or 2 (basically the bottom of the foot) would help "saturate" the entire leg below the knee and improve blood flow.
I would definitely like to try the upper body spots too as my headache and tinnitus (ringing in my ears) are bothersome.
I am also taking Eliquis (anti coagulation/blood thinner) I might have mentioned it before.
Please excuse me if already mentioned too that I had venoplasty December 2018. I started blood thinner immediately following (protocol of the interventional radiologist).
About 4-6 weeks following the procedure, some symptoms that had gone away started coming back (Headache, dizziness, ringing in my ears and then heaviness in my legs).
I had an ultrasound and then MRA (used to look at vascular structures) which showed blood clots blocking 100% of the flow in the jugular veins.
side story: I had to stop the blood thinner for a surgery I had May 31 (removal of my breast implants). A whole other interesting topic.
headache. Ringing in my ears, ear pain, neck pain, heaviness in my legs were TERRIBLE!!!!
Once I was able to start the blood thinner again, many things calmed down a lot (not gone) but improved.
Another interesting thing for MSers to try, aspirin!
I've talked to some MSers in other parts of the world who have been advised to take aspirin daily. Interesting.
Does your diet likely help with blood thinning or do you take anything?
I believe Jeff Beal takes aspirin or Plavix because of his stents. Likely helpful for his overall blood flow!
Anyway, I droned on and on enough in this lengthy email!!! »
Christine did go to the CCSVI clinic in Poland. See e mail.
« I did go to Poznań for my veins to be analyzed as well as treatment.
We arrived home Wednesday 925.Sept) evening and I'm fighting jet lag (hence I'm awake at 240am sending emails).
There was success as well as failure during my stay at the CCSVI Clinic.
The left IJ and azygos veins were successfully re-opened.
They found that my left renal vein was collapse 78%. Look up Nutcracker Syndrome images/definition for more of the details. Basically, the left renal vein gets "pinched" between the superior mesenteric artery and the aorta. Although I wasn't having some of the symptoms, Dr. Sclafani has found that many women with "MS" and lesions in the thoracic spine have some stenosis of the azygos vein as well as collapse of the left renal vein. Interesting finding.
I ended up having two stents placed in the left renal vein to improve the collapsing.
I will definitely say many of my abdominal and pelvic symptoms are gone.
The failure was in getting into and re-opening my Rt IJV. I have 100% blockage (from previous blood clot that became scar tissue) they attempted to enter the IJ at the time of venoplasty initially but weren't able to get a wire into the scar tissue. Additionally they found the renal vein collapse so I had a second procedure. They attempted to enter the Rt IJ directly above it in hopes to get a wire and balloon into the scar tissue then place a stent to keep the vein open. They placed the renal vein stents during that procedure too. I'm extremely disappointed they failed with the Rt IJV but I'm wasting too much energy thinking about it now.
I have improvement of symptoms from the successful venoplasty of the left IJ and azygos veins for sure, but I continue to have the ringing in my ears (Rt> Lt), head ache, dizziness (feeling of being intoxicated continuously, especially when I close my eyes or its dark), coldness in my fingers and toes, tiring of my left foot, (and more) that had all disappeared following my last procedure until the blood clots formed.
Aside for what seems like a lot of negative as I read it, there was significant success in finding the collapse of the renal vein and re-oepning the left IJ and azygos veins.
I think I read in one of your blogs that you haven't sought out evaluation of your veins but if I can encourage you to do so, you might have some significant discoveries that are worth the time and money to find out. I highly recommend the CCSVI Clinic
https://ccsvi-clinic.com › ...
as well as the team there.
I'm looking forward to reading your introductory paper as well as the new blog post you mentioned.
Sat 10/5/2019 1:35 PM
· You
Anna,
Sat Oct 5, 2019 More on CCSVI cinic Poland
https://ccsvi-clinic.com › ...
It was definitely an extremely encouraging trip. The blockage is scar tissue that formed from the blood clot after my venoplasty December 2018. I actually had blockage in both IJVs but the right is 100% closed where the left had an opening to get a wire through to repeat a venoplasty.
The physician team in Poland thinks the balloons were over inflated at the initial procedure and while I had immediate resolution of many symptoms, the muscle lining in the vein might have been injured causing a blood clot to form. I already had the clots when I had to stop the blood thinner for surgery in May, so there was not an increased risk at that point.
I am taking the same blood thinner plus a baby aspirin now. Not only in hopes to keep the left IJV patent but to avoid a clots where the stents were placed in my left renal vein. I had ultrasounds Wednesday last week to look at my IJVs and renal vein stents. All is well. I will return for repeat US in 2ish months ».
On Oct 2, 2019, at 10:26, imago view <imagoview@hotmail.com> wrote:
Hello Christina:
The Polish clinic recommended the following breathing exercise I will try to get Oxygen in my brain. Oct 5
2. Have you heard about Wim Hoff breathing technique? https://youtu.be/-XTv2snc21s
Here's a good discussion about it https://youtu.be/D6EPuUdIC1E
The owner of the CCSVI Clinic told me about it.
Another interesting link on increased blood volume during pregnancy : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422383/pdf/12288_2012_Article_175.pdf
I have urged Christine to write a paper about her theory that MS symptoms disappear during pregnancy as blood volume increases. (She asked to work on my paper, but this blood volume theory is HER idea, she should claim it.)
It’s obviously encouraging for me to find an intelligent, well informed MSer with whom I can work to unlock a healing protocol.
My next post will highlight « violin’s » many ideas.
sLet MS researchers set their test tubes aside and begin serious study of the CNS fluid circulation factor in MS.
Tags :Multiple Sclerosis
.
« Sent: Thursday, August 22, 2019 11:51 PM
To: imagoview@hotmail.com <imagoview@hotmail.com>
Subject: breath of fresh air/my hero
Anna,
I would like to take the time to tell you how GRATEFUL I am to you for continually blogging about MS.
I was diagnosed in 2015 with "MS" by MRI (brain, cspine and tspine) showing lesions "consistent with demylenation". My first girl was about 6months old. I had (what I would call) my frist (life altering) flare approximately 1 year ago (my 2nd daughter was 16mo old).
I first found your blog when researching CCSVI and other non-mainstream treatments after watching the film Living Proof.
When I read the first paper I found about the central vein sign and the idea of the pathophysiology of MS being vascular, I cried and cried. It made SO MUCH SENSE. Answers to questions my (MULTIPLE) neurologist(s) could NOT answer.
I searched again a few months ago to see if Dr. Terry Wahls had venoplasty procedure and there was your blog again with an OUTSTANDING post.
LOOOOOOOOONG story short, I found you again today when I clicked on the bookmark I must have made (at my last visit) to see if you've still been writing.
HA! have you been writing.
GIRL, you are my hero.
I read your post from 8/19/19. Brought me to tears AGAIN. I was literally having this conversation with my girlfriends 2 weeks ago.
Many of the things I imagined I would write after having venoplasty myself in Dec 2018, are right there on your blog (as well as Joan Beal's blog).
When I grow up (i'm currently 38) I would like to be you.
In your January 21, 2015 post, you eluded to a paper you were writing.
I have dreams about getting accepted into a PhD program for my thesis on The Mother and MS: Why we get "better" and then have a flare.
But seriously, why do women get "better" during their 2nd trimester of pregnancy? THEIR BLOOD VOLUME DOUBLES?!?! Duh. It's a scientific fact.
I started this email to you before I started searching for said paper.
I will look once I send this to you.
Longer story even longer.
Many of my symptoms that that disappeared after the procedure in Dec have slowly returned (I ended up with DVTs in BOTH of my IJVs).
I'm heading to Poland (https://ccsvi-clinic.com/en/about-clinic) Sept 7 to have a more comprehensive look at my venous system. They will do some blood work to look at bacteria/viral illnesses too.
Anyway, I felt I had to reach out to you. I have done LOTS and LOTS of reading on all the topics you have posted about over the years but very little writing. I am interested in talking further with you about how I can help at all.
Sincerely,
Christina Willman
Who is Christina Willman?
In her own words.
« I am not a doctor. I am a Physician Assistant by training (Masters Degree in Physician Assistant studies). Are you familiar with the profession at all? In the US we are now grouped into what is called Advanced Practice Provider's along with Nurse Practitioners (RNs who have a masters degree in nursing).
Anyway, I live in Arizona and can have a DEA license to prescribe medication. I've worked in the orthopedic surgery specialty for 13 years.
Although I've spent A LOT of time researching MS since my official diagnosis is 2015, and now vascular topics, I definitely have to admit I don't know a lot about neuro and vascular stuff.
Once I heard about a possible link of MS to vascular, I've been on a rampage to understand more.
Getting back to the medicine.
Venous smooth muscle is thinner in the the vessel wall than in an artery, which is why the artery is thicker and more rigid (can hold a stent better, interesting point). »
Back Cure Enigmas. Christina’s healing approach is ideal. She analyzes her own symptoms, she reads and reads with an open mind, does not succumb to dogma, is pro-active (the earlier one stops the MS process, the more likely the recovery) and seeks expert advice and feedback every step of the way. One of her original ideas which could serve MSers very well.
Christina Willman
Tue 8/27/2019
Anna,
« Another interesting thing I thought you might find interesting.
Might be interesting for MSers to talk to their neurologist or primary care doctor.
Backstory:
I have been prescribing Flomax for my dad for over a year so he can urinate better. It works on the prostate but also relaxes smooth muscle to improve urine flow.
One day I got to thinking, hmmm maybe I should try Flomax myself.....
Well, I went to see my primary care doctor (who is awesome and knows I'm off the reservation and he'll try things I suggest as I've researched most things to death) and asked him about it (really just a vasodilator in general).
He wasn't so sure about trying flomax but said he would be up for trying a different vasodilator.
Amlodipineis a calcium channel blocker used for angina (chest pain caused by constriction of the heart vessels). It relaxes smooth muscle by blocking calcium channels.
Boom. Winner. It helps the heaviness in my legs and back as well as my overall fatigue! He prescribed me 2.5mg to take daily. A couple times I've taken 2 pills (so 5mg) and it's AWESOME! I'm going to ask him if I can start 5mg/day since the adult dose is 5-10mg daily. The negative effects are dizziness and hypotension (drop in blood pressure).
Anyway, I thought you might find it to be another interesting topic to look into. »
Me again : I did ask my MD about prescribing Amlodipine, though I wasn’t surprised by her response. I came to see the MD because I had injured my arm (turns out it was broken). I had taken a mild relaxant to sleep the evening before. Usually this weakens my legs so I resolved to be very cautious the next morning. After beginning my toilette, I woke up falling on the edge of the bidet. This is bad, frightening news. I didn’t slip or trip, I simply blanked out. I have low blood pressure (90 over 60), did I faint ? Anyway, I am now 71 and starting just this year seem unable to judge accurately my capabilities. Apparently older people tend to fall because of the medication they take. So that sounds like me now which means I’ll never take another tranquilizer or sleeping pill. (Cannabis would probably be a good solution to relax the vascular/muscular complex which is why I occasionally take a « relaxant », but here in France it is illegal. Hmm, I could cultivate the plant in my garden ?) Anyway, my doctor pointed out that Amlodipine lowers blood pressure and I already have low blood pressure. Given the recent, unexplained fall, that sounds like a bad idea FOR ME. Christine is 38, I am 71, that’s a big difference and her MS manifested recently. Given her dynamic, intelligent approach I believe she has every reason to find effective treatments.
Again, rather than embark on a therapy without consulting an « expert », she visited an acupuncturist to know of my TENS acupressure self treatment was a good idea.
DATE :
Side note, I got a TENS unit and am hoping to see an acupuncturist soon to help with with placement of the electrodes as you describe in your blog post.
Would it be OK if I just try to put them where you describe? I have been researching the meridians on the website you recommend but don't feel super confident.
One of my first symptoms in 2013 was drop foot in my left after running which had progressed and now happens walking shorter distances, especially in the heat (however this went away after my venoplasty in 2018) so I'd really like to work on the dorsiflexor ».
So, I'm not sure if I see improvement in my symptoms because of the improved blood flow and/or there is some action on the spasms of the venous vessel, I don't know.
Which brings me to what you wrote on you blog about the vascular spasms. I don't think that was incorrect at all! I think it's a GREAT point and is another one of the things that should be studied further!
TENS: I got one on Amazon after reading (and re-reading) your posts about acupressure/acupuncture and using the TENS unit.
I saw an accupuncturist Thursday for the first time ever. He was VERY intrigued by my story and gave me a brief overview of the meridians. I used the TENS unit that night on GB 34 and used Kidney 2 (per his recommendation) as the complementary (Yin or Yang...?) he said the Kidney 1 or 2 (basically the bottom of the foot) would help "saturate" the entire leg below the knee and improve blood flow.
I would definitely like to try the upper body spots too as my headache and tinnitus (ringing in my ears) are bothersome.
I am also taking Eliquis (anti coagulation/blood thinner) I might have mentioned it before.
Please excuse me if already mentioned too that I had venoplasty December 2018. I started blood thinner immediately following (protocol of the interventional radiologist).
About 4-6 weeks following the procedure, some symptoms that had gone away started coming back (Headache, dizziness, ringing in my ears and then heaviness in my legs).
I had an ultrasound and then MRA (used to look at vascular structures) which showed blood clots blocking 100% of the flow in the jugular veins.
side story: I had to stop the blood thinner for a surgery I had May 31 (removal of my breast implants). A whole other interesting topic.
headache. Ringing in my ears, ear pain, neck pain, heaviness in my legs were TERRIBLE!!!!
Once I was able to start the blood thinner again, many things calmed down a lot (not gone) but improved.
Another interesting thing for MSers to try, aspirin!
I've talked to some MSers in other parts of the world who have been advised to take aspirin daily. Interesting.
Does your diet likely help with blood thinning or do you take anything?
I believe Jeff Beal takes aspirin or Plavix because of his stents. Likely helpful for his overall blood flow!
Anyway, I droned on and on enough in this lengthy email!!! »
Christine did go to the CCSVI clinic in Poland. See e mail.
« I did go to Poznań for my veins to be analyzed as well as treatment.
We arrived home Wednesday 925.Sept) evening and I'm fighting jet lag (hence I'm awake at 240am sending emails).
There was success as well as failure during my stay at the CCSVI Clinic.
The left IJ and azygos veins were successfully re-opened.
They found that my left renal vein was collapse 78%. Look up Nutcracker Syndrome images/definition for more of the details. Basically, the left renal vein gets "pinched" between the superior mesenteric artery and the aorta. Although I wasn't having some of the symptoms, Dr. Sclafani has found that many women with "MS" and lesions in the thoracic spine have some stenosis of the azygos vein as well as collapse of the left renal vein. Interesting finding.
I ended up having two stents placed in the left renal vein to improve the collapsing.
I will definitely say many of my abdominal and pelvic symptoms are gone.
The failure was in getting into and re-opening my Rt IJV. I have 100% blockage (from previous blood clot that became scar tissue) they attempted to enter the IJ at the time of venoplasty initially but weren't able to get a wire into the scar tissue. Additionally they found the renal vein collapse so I had a second procedure. They attempted to enter the Rt IJ directly above it in hopes to get a wire and balloon into the scar tissue then place a stent to keep the vein open. They placed the renal vein stents during that procedure too. I'm extremely disappointed they failed with the Rt IJV but I'm wasting too much energy thinking about it now.
I have improvement of symptoms from the successful venoplasty of the left IJ and azygos veins for sure, but I continue to have the ringing in my ears (Rt> Lt), head ache, dizziness (feeling of being intoxicated continuously, especially when I close my eyes or its dark), coldness in my fingers and toes, tiring of my left foot, (and more) that had all disappeared following my last procedure until the blood clots formed.
Aside for what seems like a lot of negative as I read it, there was significant success in finding the collapse of the renal vein and re-oepning the left IJ and azygos veins.
I think I read in one of your blogs that you haven't sought out evaluation of your veins but if I can encourage you to do so, you might have some significant discoveries that are worth the time and money to find out. I highly recommend the CCSVI Clinic
https://ccsvi-clinic.com › ...
as well as the team there.
I'm looking forward to reading your introductory paper as well as the new blog post you mentioned.
Sat 10/5/2019 1:35 PM
· You
Anna,
Sat Oct 5, 2019 More on CCSVI cinic Poland
https://ccsvi-clinic.com › ...
It was definitely an extremely encouraging trip. The blockage is scar tissue that formed from the blood clot after my venoplasty December 2018. I actually had blockage in both IJVs but the right is 100% closed where the left had an opening to get a wire through to repeat a venoplasty.
The physician team in Poland thinks the balloons were over inflated at the initial procedure and while I had immediate resolution of many symptoms, the muscle lining in the vein might have been injured causing a blood clot to form. I already had the clots when I had to stop the blood thinner for surgery in May, so there was not an increased risk at that point.
I am taking the same blood thinner plus a baby aspirin now. Not only in hopes to keep the left IJV patent but to avoid a clots where the stents were placed in my left renal vein. I had ultrasounds Wednesday last week to look at my IJVs and renal vein stents. All is well. I will return for repeat US in 2ish months ».
On Oct 2, 2019, at 10:26, imago view <imagoview@hotmail.com> wrote:
Hello Christina:
The Polish clinic recommended the following breathing exercise I will try to get Oxygen in my brain. Oct 5
2. Have you heard about Wim Hoff breathing technique? https://youtu.be/-XTv2snc21s
Here's a good discussion about it https://youtu.be/D6EPuUdIC1E
The owner of the CCSVI Clinic told me about it.
Another interesting link on increased blood volume during pregnancy : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422383/pdf/12288_2012_Article_175.pdf
I have urged Christine to write a paper about her theory that MS symptoms disappear during pregnancy as blood volume increases. (She asked to work on my paper, but this blood volume theory is HER idea, she should claim it.)
It’s obviously encouraging for me to find an intelligent, well informed MSer with whom I can work to unlock a healing protocol.
My next post will highlight « violin’s » many ideas.
sLet MS researchers set their test tubes aside and begin serious study of the CNS fluid circulation factor in MS.
Tags :Multiple Sclerosis
.
Click here to edit.
Determine your own Paleo-Macrobiotic Diet
An updated version can be found below under page titled Allergies, Supplements, Food
My French Acupuncturist suggested today (February 1, 2013) that I be tested for
food intolerances (which are not the same as allergies - just as my San Francisco
Kinesiologist said) at a Parisian lab which takes a blood sample and tests
for at least 250 items. Since I have confidence in my Kinesiologist's very successful work, I would
do the blood work only to compare the two methods. But as the Doctor said, Kinesiology
is subjective and one can't be assured of the results. And let's face it, most people
want "material" proof. There are apparently 4 labs which perform the analysis in Paris. This would
appear the best road to follow for most people. I assume the work is available in the US as well, probably through
a Holistic Doctor or Naturopath.
First let’s think about all the reasons you might not want to be bothered by Diet. With a major health problem life is difficult enough without depriving yourself of the pleasure of eating. Food resonates with family, security, comfort, friendship, sharing. If you can’t eat how other’s eat, this becomes another factor of exclusion. Often people offer a treat as an act of generosity in order to give pleasure, how can you refuse that without offending? Children affirm their character by choosing what they want to eat, food becomes a central facet of one’s identity.
Now look at the map of MS incidence. Northern (Protestant?) Europe and North America are particularly afflicted. But the diets in these areas emphasize the“suspect” Neolithic diet of Wheat, Meat and Dairy. Southern Europe is less affected with it’s olive oil, vegetable, fish based diets. But it is especially Japan which gives the good example because their diet is founded on rice, fish, vegetables, and seaweed. Though they have a hard working, “Success Stress” culture, their diet protects them. Unfortunately the past 30 years the incidence of MS has increased dramatically in Japan, the age of onset younger. Why? An increasingly westernized, gluten based (and junk food) diet.
So I am going to propose what I'll call the "Paleo-Macrobiotic" Diet which contains the essentials of a program I followed with great success in the 1980's.
Give yourself a deadline. Keep a journal. Note carefully any changes, progress as well as set backs.
When I healed the first time beginning February 1984 it took me a year to recover lost function. I began to experience the pins and needles, numbness and pain of the early onset, but at the same time everything began to work again. This confirms a central observation in natural healing, one passes through the same symptoms in reverse of the original illness. But it took a good year for real results. So this time (January 2012) I decided to give myself a year. Then I thought I would make it 18 months, that is to say only one summer and the other months spring, fall and winter. So I’ll go at least as far as June 2013.
Now, depending on the results, I may well continue. But by giving yourself a time frame, it doesn’t feel like such an ordeal. It’s like being confined for a period of time, then afterwards you’ll be free. This past January I didn’t expect any “results” for at least a year, but after 2 months the muscles on the outside of my right leg began to cramp which meant that the nerves were working again. I can bend my knee while on my back by working the side of the thigh. Will there be any more improvement? I don’t know. My dream is that I retrieve more function in my right hand which will allow me to work the arm.
(Update January 2013. My right leg continues to strengthen. My Physical Therapist was impressed by the improvements after a 6 month absence. Recently I had no access to gluten free bread so I ate some bread for 3 days. Wheat doesn't apparently bother me, no evident "allergy" symptoms, once in a while won't kill me, but I noticed increasing insomnia, and in particular my bladder became so irritated I thought I had cystitis. Once off the glutens, I've recuperated my equilibrium and bladder strength. Other improvements, my head has "cleared" up and my intestines don't feel bloated. After I stimulate the blood circulation in the morning with the TENS acupressure, I'm no longer depressed. Not the spectacular improvements of 1984-85, but I'm nearly 30 years older and I some of the damage dates back nearly 20 years. Anyway, the improvements are important enough that I will continue the diet.)
I had been constipated since birth and know this is a trait inherited from my mother’s father (see Chapter One on Pages) In 1984 before I de-toxed I had the most repulsive smelly flatulence imaginable. My gut must have been really rotten. By September 1984 after 6 months on the diet I developed diahrrea. My Kinesiologist was delighted, saying this was a sign of detoxification. And then (with the help of my Chinese acupuncturist-herbalist) my intestines began to function normally for the first time in my life. About 5 months later my nervous system regained lost function. Question? Does MS cause the Constipation problem or does the C problem cause MS?
Expect to go through detoxification akin to withdrawal from a drug. It seems so unfair. There are those who are addicted to cigarettes, alcohol, cocaine, heroin and I’m addicted to WHEAT and COFFEE. The first time I withdrew from these very ordinary substances, I went through a bit of hell the first 2 or 3 days. Apparently it takes at least 5 days to free yourself from food intolerances. (These aren’t the same as blood tested “allergies.”) I can’t imagine going through a real drug withdrawal.
Those whose MS onset is fairly recent, who are young, can expect real recovery UNLESS they have a serious structural stenosis. (Even so whatever the situation, it’s worth a try.)
Make it easy. (In the late 1960’s I tried a Macrobiotic diet, but the recipes in the book I was using were unnecessarily complicated so I stopped. Too bad. I really believe I wouldn't have developed MS had I continued. ) When dieting butter looked like a repulsive yellow greasy blob.
So here is a basic diet. Some may have individual intolerances or allergies I can’t account for in a general diet. Consulting a Kinesiologist Naturopath might be a good idea.
Combine the essentials of Dr. Wahls’ diet found on You Tube at TEDxIowa City- Minding your Mitochondria, (now apparently called the PALEO DIET) and the Japanese Macrobiotic diet found on Wikipedia .
(Copy below). I can see now that "my" diet resembles the Paleolithic Diet developed by Roger MacDougall after he developed MS in 1953, also on Wikipedia. (Dr. Wahls has picked up the Paleo diet. I don't agree with her ban on grains.)
The Kinesiologist nutritionist Dr. Jimmy Scott worked up this personalized diet
for me through muscle testing on March 6, 1984 (see page.) I decided to follow it along with
taking mostly Standard Process supplements ( also determined through muscle testing)
with spectacular results. I detoxified and healed. I admit I was highly
skeptical at first, I feared Dr. Scott (a PhD in physiological psychology I
think?) was a quack, but since it couldn't harm me I decided to give it a try.
Well, you have to give the devil his due, after a year my intestines were
cleaned out and then the nerve damage healed, the results so spectacular that
my neurologist declared I couldn't possibly have healed like that if I had MS,
therefore I didn't have it. (Looking through my notes I realize the diet I show here was the first one.
Over time the diet evolved and became less rigorous, I was allowed eventually to use salt, the number of meals per day were reduced, etc.)
First Diet:
Servings per week:
Starchy vegetables 1 raw, 1 cooked
Lo starchy vegetables 8 raw, 3 cooked
Acid fruits 1 raw. Sub-acid fruits 1 raw, Sweet fruits 1 raw
Eggs 6 raw. 2 cooked
NO Dairy. NO Red meats. NO Organ meats.
Poultry 1 cooked (must eat with raw veggies)
Seafood 4 Raw (Sushi entered my life here)
Nuts 3 Raw
Grains 4 cooked (soak 8-12 hours first)
Seeds 2 Raw
Misc. 3 Cooked
Veggie Juice 12 Raw cups per week
Meals per day - 11
Max food per meal - 1 cup
Water per day 40-45 ozs
Salt per day - 0
Oil per day - 1/2 tsp
Avoid avocado
Eat Papaya;
Dr. Scott drew up a complicated chart about combining food correctly.
For instance melons combine only with acid or sub acid fruits and nothing else.
(I didn't pay too much attention to this. He was a perfectionist, very detailed.)
I made some compromises. For instance, I eat more fruit than suggested.
Nutritional Muscle testing forbade the following for me as being food intolerances.
Lactose (Even though Dairy was forbidden, I did and do eat lactose free dairy products - Yoghurt, brie, muenster, camembert cheeses, ghie, lactose free milk products)
No glutens which in my case means no wheat, rye, barley, oats.
OK grains are rice, millet, buckwheat, quinoa, corn
No "legumes" - peas, beans, peanuts, soy alfalfa, carob, licorice
No honey
No coffee, tea, sugar, artificial flavors, colors, preservatives,"foods" etc (I do drink tea. Coffee really does bother me.)
No margarine. Avoid safflower and corn oils.
Do use sesame, coconut and ghie
No olives
No pineapple, nutmeg, mace, chamomile, sarsparilla
This obviously looks draconian. My main focus now is to avoid glutens, emphasize fish and seafood
over red meat, make the veggie juice regularly, munch on seeds and nuts if I
need to munch. I'm not eating 11 one cup meals a day, I do use salt. I just
found this diet in my papers so I'm going to try to adjust my current eating
accordingly. (I tend towards constipation, so someone tending towards diarrhea
may not be able to tolerate all the raw veggies and raw veggie juice. Needs testing.)
The supplements were important in the detox process,
also to remove intestinal parasites (which actually is easy, using vacuum dried
fruits like papaya or Zymex II which dissolve the beasties coat. Most people do have
intestinal parasites.)
Kinesiology muscle testing for food intolerances does work, but it is very unorthodox and you need to find a competent Kinesiologist OR find a Holistic Doctor who can order a blood test for food intolerances.
Buy a powerful juicer, the more powerful it is the easier the extraction. (I’m using a Phillips purchased in France). One caution. Those subject to diarrhea may not be able to tolerate 2 cups a day. Adjust as needed.
Buy Gluten free bread. Rice or Corn cakes: Japanese rice Mochi cakes are excellent, pop in the oven they puff up to become hot and chewy,delicious. Try with almond butter.
For protein emphasize wild Fish: Raw fish in Sushi is excellent (avoid raw Salmon) but cooked fish is better than meat because the latter has saturated fat. One animal protein a day. I know the vegans won’t like this, but I can’t survive without one serving a day and I have an intolerance for soybeans.
Farm raised poultry and eggs. If you eat red meat always eat a raw vegetable with it.
Avoid or greatly limit saturated Fat (found in red meats, butter etc.) No Pork , too fat. Also avoid nitrites in treated meats such as sausages, bacon. Avoid chemical food additives and processed food in general. No aspartame.
Organ meat once a week.
Seeds and Nuts. Walnuts are an outstanding source of Omega-3 unsaturated fatty acids. Almond nut butter, nut butters in general. (I am forbidden peanut butter.)
Seaweed
And of course no coffee, no alcohol (My brain must lack the myelin insulation because wine penetrates directly into the nervous system from the blood. On the other hand so does the veggie juice – for the better.) I do drink tea.
For sweets try dried fruit, or fruit in general, bananas.
To correct Dr. Wahls' PALEO DIET I would reduce the red meat intake to no more than once a week and once a week organ food. Always eat a raw vegetable when you eat the meat. Fish is the best protein, and barnyard raised chicken. I would add non gluten grains, nuts and seeds, and the veggie juice to her suggested diet.
The following Japanese macrobiotic diet was copied from Wikipedia. (As you can see I eat more animal protein than is
suggested.)
"Well chewed whole cereal grains, especially brown rice: 40-60%
Vegetables: 20-30%
Beans and legumes: 5-10%
Miso soup: 5%
Sea vegetables: 5%
Traditionally or naturally processed foods: 5-10%
Fish and seafood, seeds and nuts, seed
and nut butters, seasonings, sweeteners, fruits and beverages may be enjoyed
occasionally, 2-3 times per week. Other naturally raised animal products may be
included if needed during dietary transition or according to individual needs."
One added comment: Refer to the page on muscle testing to understand
that when the body is balanced energetically through Chinese
medicine-derived energy therapies, the muscles are strengthened. A stressed
organism loses muscle strength. Optimal diet therefore reduces stress on the
vascular system preventing blood reflux into the brain, it can heal damaged
tissue, and by preventing an "unbalanced" electromagnetic energy field in the
body it can actually strengthen the muscles.
An updated version can be found below under page titled Allergies, Supplements, Food
My French Acupuncturist suggested today (February 1, 2013) that I be tested for
food intolerances (which are not the same as allergies - just as my San Francisco
Kinesiologist said) at a Parisian lab which takes a blood sample and tests
for at least 250 items. Since I have confidence in my Kinesiologist's very successful work, I would
do the blood work only to compare the two methods. But as the Doctor said, Kinesiology
is subjective and one can't be assured of the results. And let's face it, most people
want "material" proof. There are apparently 4 labs which perform the analysis in Paris. This would
appear the best road to follow for most people. I assume the work is available in the US as well, probably through
a Holistic Doctor or Naturopath.
First let’s think about all the reasons you might not want to be bothered by Diet. With a major health problem life is difficult enough without depriving yourself of the pleasure of eating. Food resonates with family, security, comfort, friendship, sharing. If you can’t eat how other’s eat, this becomes another factor of exclusion. Often people offer a treat as an act of generosity in order to give pleasure, how can you refuse that without offending? Children affirm their character by choosing what they want to eat, food becomes a central facet of one’s identity.
Now look at the map of MS incidence. Northern (Protestant?) Europe and North America are particularly afflicted. But the diets in these areas emphasize the“suspect” Neolithic diet of Wheat, Meat and Dairy. Southern Europe is less affected with it’s olive oil, vegetable, fish based diets. But it is especially Japan which gives the good example because their diet is founded on rice, fish, vegetables, and seaweed. Though they have a hard working, “Success Stress” culture, their diet protects them. Unfortunately the past 30 years the incidence of MS has increased dramatically in Japan, the age of onset younger. Why? An increasingly westernized, gluten based (and junk food) diet.
So I am going to propose what I'll call the "Paleo-Macrobiotic" Diet which contains the essentials of a program I followed with great success in the 1980's.
Give yourself a deadline. Keep a journal. Note carefully any changes, progress as well as set backs.
When I healed the first time beginning February 1984 it took me a year to recover lost function. I began to experience the pins and needles, numbness and pain of the early onset, but at the same time everything began to work again. This confirms a central observation in natural healing, one passes through the same symptoms in reverse of the original illness. But it took a good year for real results. So this time (January 2012) I decided to give myself a year. Then I thought I would make it 18 months, that is to say only one summer and the other months spring, fall and winter. So I’ll go at least as far as June 2013.
Now, depending on the results, I may well continue. But by giving yourself a time frame, it doesn’t feel like such an ordeal. It’s like being confined for a period of time, then afterwards you’ll be free. This past January I didn’t expect any “results” for at least a year, but after 2 months the muscles on the outside of my right leg began to cramp which meant that the nerves were working again. I can bend my knee while on my back by working the side of the thigh. Will there be any more improvement? I don’t know. My dream is that I retrieve more function in my right hand which will allow me to work the arm.
(Update January 2013. My right leg continues to strengthen. My Physical Therapist was impressed by the improvements after a 6 month absence. Recently I had no access to gluten free bread so I ate some bread for 3 days. Wheat doesn't apparently bother me, no evident "allergy" symptoms, once in a while won't kill me, but I noticed increasing insomnia, and in particular my bladder became so irritated I thought I had cystitis. Once off the glutens, I've recuperated my equilibrium and bladder strength. Other improvements, my head has "cleared" up and my intestines don't feel bloated. After I stimulate the blood circulation in the morning with the TENS acupressure, I'm no longer depressed. Not the spectacular improvements of 1984-85, but I'm nearly 30 years older and I some of the damage dates back nearly 20 years. Anyway, the improvements are important enough that I will continue the diet.)
I had been constipated since birth and know this is a trait inherited from my mother’s father (see Chapter One on Pages) In 1984 before I de-toxed I had the most repulsive smelly flatulence imaginable. My gut must have been really rotten. By September 1984 after 6 months on the diet I developed diahrrea. My Kinesiologist was delighted, saying this was a sign of detoxification. And then (with the help of my Chinese acupuncturist-herbalist) my intestines began to function normally for the first time in my life. About 5 months later my nervous system regained lost function. Question? Does MS cause the Constipation problem or does the C problem cause MS?
Expect to go through detoxification akin to withdrawal from a drug. It seems so unfair. There are those who are addicted to cigarettes, alcohol, cocaine, heroin and I’m addicted to WHEAT and COFFEE. The first time I withdrew from these very ordinary substances, I went through a bit of hell the first 2 or 3 days. Apparently it takes at least 5 days to free yourself from food intolerances. (These aren’t the same as blood tested “allergies.”) I can’t imagine going through a real drug withdrawal.
Those whose MS onset is fairly recent, who are young, can expect real recovery UNLESS they have a serious structural stenosis. (Even so whatever the situation, it’s worth a try.)
Make it easy. (In the late 1960’s I tried a Macrobiotic diet, but the recipes in the book I was using were unnecessarily complicated so I stopped. Too bad. I really believe I wouldn't have developed MS had I continued. ) When dieting butter looked like a repulsive yellow greasy blob.
So here is a basic diet. Some may have individual intolerances or allergies I can’t account for in a general diet. Consulting a Kinesiologist Naturopath might be a good idea.
Combine the essentials of Dr. Wahls’ diet found on You Tube at TEDxIowa City- Minding your Mitochondria, (now apparently called the PALEO DIET) and the Japanese Macrobiotic diet found on Wikipedia .
(Copy below). I can see now that "my" diet resembles the Paleolithic Diet developed by Roger MacDougall after he developed MS in 1953, also on Wikipedia. (Dr. Wahls has picked up the Paleo diet. I don't agree with her ban on grains.)
The Kinesiologist nutritionist Dr. Jimmy Scott worked up this personalized diet
for me through muscle testing on March 6, 1984 (see page.) I decided to follow it along with
taking mostly Standard Process supplements ( also determined through muscle testing)
with spectacular results. I detoxified and healed. I admit I was highly
skeptical at first, I feared Dr. Scott (a PhD in physiological psychology I
think?) was a quack, but since it couldn't harm me I decided to give it a try.
Well, you have to give the devil his due, after a year my intestines were
cleaned out and then the nerve damage healed, the results so spectacular that
my neurologist declared I couldn't possibly have healed like that if I had MS,
therefore I didn't have it. (Looking through my notes I realize the diet I show here was the first one.
Over time the diet evolved and became less rigorous, I was allowed eventually to use salt, the number of meals per day were reduced, etc.)
First Diet:
Servings per week:
Starchy vegetables 1 raw, 1 cooked
Lo starchy vegetables 8 raw, 3 cooked
Acid fruits 1 raw. Sub-acid fruits 1 raw, Sweet fruits 1 raw
Eggs 6 raw. 2 cooked
NO Dairy. NO Red meats. NO Organ meats.
Poultry 1 cooked (must eat with raw veggies)
Seafood 4 Raw (Sushi entered my life here)
Nuts 3 Raw
Grains 4 cooked (soak 8-12 hours first)
Seeds 2 Raw
Misc. 3 Cooked
Veggie Juice 12 Raw cups per week
Meals per day - 11
Max food per meal - 1 cup
Water per day 40-45 ozs
Salt per day - 0
Oil per day - 1/2 tsp
Avoid avocado
Eat Papaya;
Dr. Scott drew up a complicated chart about combining food correctly.
For instance melons combine only with acid or sub acid fruits and nothing else.
(I didn't pay too much attention to this. He was a perfectionist, very detailed.)
I made some compromises. For instance, I eat more fruit than suggested.
Nutritional Muscle testing forbade the following for me as being food intolerances.
Lactose (Even though Dairy was forbidden, I did and do eat lactose free dairy products - Yoghurt, brie, muenster, camembert cheeses, ghie, lactose free milk products)
No glutens which in my case means no wheat, rye, barley, oats.
OK grains are rice, millet, buckwheat, quinoa, corn
No "legumes" - peas, beans, peanuts, soy alfalfa, carob, licorice
No honey
No coffee, tea, sugar, artificial flavors, colors, preservatives,"foods" etc (I do drink tea. Coffee really does bother me.)
No margarine. Avoid safflower and corn oils.
Do use sesame, coconut and ghie
No olives
No pineapple, nutmeg, mace, chamomile, sarsparilla
This obviously looks draconian. My main focus now is to avoid glutens, emphasize fish and seafood
over red meat, make the veggie juice regularly, munch on seeds and nuts if I
need to munch. I'm not eating 11 one cup meals a day, I do use salt. I just
found this diet in my papers so I'm going to try to adjust my current eating
accordingly. (I tend towards constipation, so someone tending towards diarrhea
may not be able to tolerate all the raw veggies and raw veggie juice. Needs testing.)
The supplements were important in the detox process,
also to remove intestinal parasites (which actually is easy, using vacuum dried
fruits like papaya or Zymex II which dissolve the beasties coat. Most people do have
intestinal parasites.)
Kinesiology muscle testing for food intolerances does work, but it is very unorthodox and you need to find a competent Kinesiologist OR find a Holistic Doctor who can order a blood test for food intolerances.
Buy a powerful juicer, the more powerful it is the easier the extraction. (I’m using a Phillips purchased in France). One caution. Those subject to diarrhea may not be able to tolerate 2 cups a day. Adjust as needed.
Buy Gluten free bread. Rice or Corn cakes: Japanese rice Mochi cakes are excellent, pop in the oven they puff up to become hot and chewy,delicious. Try with almond butter.
For protein emphasize wild Fish: Raw fish in Sushi is excellent (avoid raw Salmon) but cooked fish is better than meat because the latter has saturated fat. One animal protein a day. I know the vegans won’t like this, but I can’t survive without one serving a day and I have an intolerance for soybeans.
Farm raised poultry and eggs. If you eat red meat always eat a raw vegetable with it.
Avoid or greatly limit saturated Fat (found in red meats, butter etc.) No Pork , too fat. Also avoid nitrites in treated meats such as sausages, bacon. Avoid chemical food additives and processed food in general. No aspartame.
Organ meat once a week.
Seeds and Nuts. Walnuts are an outstanding source of Omega-3 unsaturated fatty acids. Almond nut butter, nut butters in general. (I am forbidden peanut butter.)
Seaweed
And of course no coffee, no alcohol (My brain must lack the myelin insulation because wine penetrates directly into the nervous system from the blood. On the other hand so does the veggie juice – for the better.) I do drink tea.
For sweets try dried fruit, or fruit in general, bananas.
To correct Dr. Wahls' PALEO DIET I would reduce the red meat intake to no more than once a week and once a week organ food. Always eat a raw vegetable when you eat the meat. Fish is the best protein, and barnyard raised chicken. I would add non gluten grains, nuts and seeds, and the veggie juice to her suggested diet.
The following Japanese macrobiotic diet was copied from Wikipedia. (As you can see I eat more animal protein than is
suggested.)
"Well chewed whole cereal grains, especially brown rice: 40-60%
Vegetables: 20-30%
Beans and legumes: 5-10%
Miso soup: 5%
Sea vegetables: 5%
Traditionally or naturally processed foods: 5-10%
Fish and seafood, seeds and nuts, seed
and nut butters, seasonings, sweeteners, fruits and beverages may be enjoyed
occasionally, 2-3 times per week. Other naturally raised animal products may be
included if needed during dietary transition or according to individual needs."
One added comment: Refer to the page on muscle testing to understand
that when the body is balanced energetically through Chinese
medicine-derived energy therapies, the muscles are strengthened. A stressed
organism loses muscle strength. Optimal diet therefore reduces stress on the
vascular system preventing blood reflux into the brain, it can heal damaged
tissue, and by preventing an "unbalanced" electromagnetic energy field in the
body it can actually strengthen the muscles.