CIS diagnosis Exploring options What helps you? Diet?

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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CureOrBust » Sat Jan 19, 2013 12:59 am

CaliReader wrote:Re CCSVI, I don't know what to think, except that I'm nowhere near ready to contemplate surgery of any kind. I've had bad reactions to anesthesia in the past. I don't know what causes MS.
I have had 3 CCSVI treatments. The very first was done without any anesthesia, apart from a local at the site the catheter was inserted. It was actually the least painful, and I didn't even feel the balloon being inflated at all. It was also the most restrained; it was very early so the doctor kept in line with only the obvious to him at the time (no IVUS).

If your not prepared to do the procedure, but do have an interest in the CCSVI possibility in regards to MS, there is nothing stopping you from getting a non-invasive diagnostic ultrasound, just to check what is going on inside you. If it shows nothing, then it will also make you more comfortable with your decision to wait.

I have to say, I only caught your thread today, so pardon me for skim, reading :oops:

As you may of guessed, I have been dealing with MS for quite a few years, and would be more progressed than yourself. I would guess around a 4.5+ on the EDSS, if that means anything to you.

A couple of points on the above:
1. as far as exercise goes, its never too late. I use exercise to regain functionality. I personally push the things I feel worst at so as to regain some of that specific functionality back closer to "normal"
2. In regards to B12, make sure its MethylCobalamin, sublingual.
3. No personal science (but there is research to back it) I personally find high doses of curcumin
The one I particularly use is found at: http://www.iherb.com/Source-Naturals-Turmeric-Extract-100-Tablets/1421 but I am sure many other sites would also sell it.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby vesta » Sat Jan 19, 2013 12:07 pm

I'm from San Francisco and there are great healers available. In fact, when I left 20 years ago I fell apart. Acupuncture by someone trained in a Chinese school will stop an attack. So will a neck massage forcing blood down towards the heart. Self acupressure. My Kinesiologist is in San Francisco. So much is available. Consider the following analysis.

After Diagnosis.

Once the diagnosis has come down, it's a demyelating disease, probably MS, step back and relax, at least you don't have a brain tumour. And stress and anxiety will only make matters worse. Imagine the blood backing up, flooding your brain and/or central nervous system. You have to stop that reflux as soon as possible. That means RELAX. All the diagnosic tests in themselves are stressful, so step back from all that and begin to inform yourself.
Marc Stecker of Wheelchair Kamikaze believes that the immunosuppressive drugs developed over the last 20 years are the best treatment now available since they appear to have slowed disease progression for relapse/remit cases Nonetheless reports of efficacy are contradictory and reported side effects often serious, even fatal. Drugs are not the only option available although it's likely the only one the Neurologist will offer. Neurologists are treating an immune system reaction to a blood reflux. They are treating a secondary problem. Consider treating the original problem instead. But to do that you will have to take matters into your own hands.

I believe a major illness is a call to change. Either one participates in the transformation, or one will be transformed against one's will. I also believe true healing requires a healing partnership. The best healer acts as a faclitator in one's own self transformation, not as a director. The worst thing one can do is act like a passive object on whom an omnipotent Doctor works his "magic". An alternative healer (naturopath/nutritionist/kinesiologist???) who can help you think through the various options can be an important complement to "official" medical contacts. Now is the time to act.

Refer to the previous blog entry - MS Cure or Control: A Review

1) First, Stop the "attack" which is actually a blood reflux. I've found a neck massage forcing the blood down towards the heart is enough to stop one for me. An Acupuncture trreatment - the Gall Bladder Meridian and Bladder Meridian must be treated (see Acupuncture blog entry) - has worked for me. Your problem may be structural, so a Chiropractic or Osteopath's adjustment on the Atlas and upper cervicals might release the brain fluids. The Neurologist might have a drug which will stop the attack, though I wouldn't take something that you can't get off of after the crisis is passed. (My own early experience of an MS attack meant 6 weeks - 2 weeks of "attack" (the blood must be flooding the CNS), 2 weeks of "scarring" when the myelin dries up, and 2 weeks to recover most of lost function, leaving some deficits.)

2) Once the crisis is passed, get busy on finding a practical solution. First off, analyse what stress factor triggered off the attack. Was it emotional, professional pressure, or some kind of poisoning such as too much aspartame? An accident which injured the head-neck,back? Keep a journal and note whatever issues trigger off a problem, play the detective in your own life. Then make the necessary adjustments.

3) Consider the TOXICITY factor. Stop Aspartame and other food additives at once. (Don't bother with the mercury dental amalgams, at least not at first. Having them removed can even increase the toxicity if badly done, and there are many other factors to consider first.) I include food intolerances in the TOXICITY category.
DIET: Assume you have a gluten intolerance. Check out the Paleo-Macro diet page on this site. I favour Kinesiology to determine the ideal personalized diet, but a good therapist may be difficult if not impossible to find and for some the method (muscle testing) may appear akin to witchcraft. So find a good naturopath/nutritionist. The Paleolithic Diet developed by Roger MacDougall can be found on Wikipedia. Jimmylegs on the ThisIsMs.com site is their on site diet expert who gives referrals to other resources.
DETOXIFICATION should be part of the therapy.
SUPPLEMENTS Besides the vitamins A, B Complex, C, D, E, include Calcium Magnesium, Omega 3, Zinc, Evening Primrose Oil, Seek good advice and do your own research.
INFECTION: Some believe that infections such as Chlamydia Pneumoniae, Lyme, Epstein-Barr or other infectious diseases actually damage veins and their valves. Is the Infection still ongoing, or has it passed leaving a damaged vascular system? Some believe by treating the infection through antiobiotics the inflammatory reaction to the infection can be halted, thus restoring the vein to its proper function and preventing the blood reflux. Again the veins are implicated. However, long term treament with antibiotics obviously requires a Medical expert I was treated for a chronic infection using Standard Process Cataplex A-C, Collagen C, Calcium Magnesium and Zinc (among other things.) I believe a naturopathic protocol superior and less toxic than antibiotics. (imagine how the intestinal flora reacts to all those antibiotics.)
IMPORTANT: I believe that in the early Remit/Relapse phase one has the greatest chance to entirely heal the myelin sheath/nerve damage before it has actually dried up into a "scab" or scar. I did so within 4 years of the first big "attack". But now for me (26 years later) it is more a question of preventing further degradation.

4) Consider the STRUCTURAL factor. This means consulting with body manipulators such as Chiropractors or Osteopaths. Dental misalignment may be an issue. Once the area of blockage is identified, you may be able to treat yourself regularly with massage, stretching etc.

5) Consider the BLOOD CIRCULATION factor. Acupuncture, Self Acupressure, Ayervedic Massage, Osteopathic, Chiropractic, Swimming can all enhance blood circulation without the risk of angioplasty. I am now able to control the blood reflux through self acupressure on a daily basis. Acupuncture treatments must focus on the meridians which pass from the head, down the neck and across the shoulders or down the back, the gall bladder and bladder meridiens. Otherwise they probably won't be effective on the blood circulation.

6) ANGIOPLASTY decision. Begin by seeking NON-INVASIVE diagnosis of your veins. A quick look on Google brings up a clinic called Privatescan in Brussels which claims to use non-invasive CCSVI investigation techniques and diagnosis protocols - CT Scanner from G.E., CT venography with contrast agent, EchoDoppler Duplex from GE, 3.0 tesla MRI Scanner (MRI venography) with G.E. contrast. (I need to research this further, but so can you. I'm not promoting any clinic or therapist for angioplasty. If anything, I believe angioplasty should be tried only if all else has failed. see Angioplasty Decision blog ) If you decide on angioplasty, it is imperative that the Doctor use an INTRAVENOUS ULTRASOUND to open the stenosed veins so he can see what he is doing and avoid injury to the vein wall. Also, be assured of follow-up care.
If one has a serious vein obstruction, deformation or the vein is simply missing, angioplasty may be the only solution. It of course would be grossly unfair to imply one hasn't tried to heal if the veins are defective or even missing. It would be like admonishing an amputee that if he really works on it the arm will grow back. Of course it won't. Annette Funicello very generously and courageously published a video showing how far her disease had progressed as well as the results of an angioplasty procedure. One jugular had been entirely blocked, the other 70% blocked. She and her husband Gene Holt believe this is the only treatment which has helped her over the past 25 years of illness and she wants to promote the CCSVI theory to help others, believing if she had been treated years ago she wouldn't now be paralyzed.

IMMUNOSUPPRESSIVE DRUGS- If one has a serious physical vein blockage which causes a blood reflux, probably one will require medication to minimize CNS damage until angioplasty can release the blood flow. In this case the Neurologist would seem to be the best therapist. Tricky issue.

I want to encourage the newly diagnosed to act in their own self interest. MS isn't a death sentence, it's a call to change, the sooner the better and with you as an active participant.
These remarks are above all an admonishment to myself for having let myself fall apart after my first dramatic healing. A kick in the butt you might say. But now that the CCSVI theory is on the table, we have every possibility to take control of our fate. And in the first instance, that means ME. I'm now going to finish my personal history with particular emphasis on MY MISTAKES.

MS Cure Enigmas.net

(See blog entry also MS Cure or Control: A Review)
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby lyndacarol » Sat Jan 19, 2013 4:38 pm

Although I am slow getting to this dance, my welcome to you, Cynthia, is sincere. We are glad you found us.

You seem to be handling the situation well – reading, exercising, dietary changes, questioning.

As you may know, I believe that my MS symptoms are due to excess insulin; so I commend you for making dietary changes, especially eliminating sugar (and other sweeteners, I hope). Simple carbohydrates will also increase glucose and result in elevated levels of insulin. Despite my strict diet, I am unable to reduce my insulin level to the optimal 3 UU/ML or lower amount. I seem to have a malfunctioning pancreas; you may have the same situation. I encourage you to request a "fasting blood insulin test." The insulin test and a glucose test (for diabetes) are two DIFFERENT tests.

Good to have you here; all the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Sat Jan 19, 2013 10:16 pm

Wow.

Thank you, Cure, Vesta, Linda.

I will take your advice to heart. Cure, I can definitely add curcumin. Linda, I read your long thread on insulin a few weeks back. I found it very useful. You cover many hormones and their interactions.

I'm too early in this game to have definitive opinions. I'm still digesting a lot of data. I haven't yet explored options not paid by insurance, partly for lack of funds and partly for lack of time. I'll get that fasting blood insulin test when I can. I Never needed a doctor for more than antibiotics before. Does anyone have advice for what to look for in an alternative physician? I'm definitely interested in acupuncture. Any names of alternative health care providers in the SF Bay area would be welcome.

But yes, as Vesta said, part of what I'm struggling with how to adapt is how to calm down. This is going to be a marathon, not a sprint.

Thanks for the information and the welcome.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby vesta » Mon Jan 21, 2013 9:06 am

San Francisco Naturopath/Kinesiologist
Center for Natural Health
Carolyn Parker 649 Irving St San Francisco 94122
415-664-1464
She has a site. Also, she can recommend Doctors when needed. I've lost contact with most the healers I used but I've been absent 20 years.
I've found her work very helpful.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Sun Apr 07, 2013 6:32 pm

This is especially for Jimmylegs.

I managed to include levels for vit D, magnesium, calcium and zinc in the screening tests ordered to allow me to start Gilenya.

Here are my results. It all seems to be normal and I'm grateful that I didn't overdose, especially with vitamin D. Please feel free to comment.

zinc 83 mcg/dl

mag 2.0 mg/dl

ca 9.5 mg/dl

vit d 62 ng/ml
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Sun Apr 07, 2013 6:50 pm

hi there, thank you! great info. remember, normal is one thing, healthy is another. all ms patients are 'normal' when it comes to this kind of lab test.

anyway! your serum zinc is quite low in the normal range, lower even than the average seen in research on ms patients. remember that 'normal' is a statistical term. what range is provided by your lab for serum zinc? fyi, healthy controls are up more in the 120 range.

your magnesium level is also low. the 'normal' range is 1.7 - 2.7, but research indicates that to ensure magnesium sufficiency, you need to be in the top half of the normal range. that means aim for 2.2-2.3 at a bare minimum.

as far as I know your calcium does look good. I don't tend to see abnormal calcium associated with ms in research, so no huge surprise.

as for that vit d3. that is up there! but still safe.

so, what are your current daily intakes/sources/forms/doses/timing for zinc, mag, and d3? we can figure out next steps from there :) nb once your zinc is up 40 units or so you'll want to keep an eye on that d3 level - 6000 IU per day intake might turn out to be too high, but time and follow up testing will tell! (my d3 level went up to 108 ng/ml after zinc repletion, a big change from my former dose response, but i did not notice any side effects from the high d3 level.. just saw the results and backed off on the d3 inputs as a precautionary measure)
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Mon Apr 08, 2013 10:11 pm

Hi Jimmy,

Thanks for the reply.

D3 and zinc with breakfast. zinc is 25 mg. D3 6000 IU.

Magnesium was at bed time, but I've started taking some Gabapentin for pain, so now magnesium is sometime in the evening, at least 2 hours away from the gabapentin. I have a bottle of magnesium oxide 500 mg. I realize this isn't the best and will replace it when I finish it.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Tue Apr 09, 2013 4:39 am

no problem! okay I think it would be wise to take 50mg of zinc per day for a month and see if you can correct that low zinc level.

remind me if you're on any sort of dietary interventions? i can look at your food intake for potential interference with zinc absorption.

as for the mag, some should be taken with the d3, and some should be taken at a separate time. I certainly would not recommend doubling up on the mag oxide, not unless you feel like living in the bathroom :S maybe if you can find magnesium glycinate you could take one of each until the mag oxide is gone. eg take mag oxide with the d3, and mag glycinate between dinner and the night time gabapentin. then once the mag oxide is gone, just take two mag glycinates daily. the extra mag (in the right form) might help with the pain too. and mag glycinate won't have the same risk of GI consequences.

another question: how is your dietary magnesium intake? have you done the math for that?
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Wed Apr 10, 2013 9:12 pm

Hi Jimmy,

Thanks for the advice. I will increase the supplementation to 50 mg zinc a day.

I haven't done math as such, re magnesium, but I should get some from my diet. I eat nuts and sunflower seeds with my oats in the morning. We grow kale, broccoli, green onions, green beans etc. and I eat a fair amount of other greens such as spinach. With the help of a fruit smoothie every day, I am approaching a Wahls diet although 9 cups of fruit and vegetables is a lot.

Re zinc in diet, I eat meat at least twice a week. We also usually make a soup on the weekend from bones of meat we have cooked and either dried beans, split peas or lentils and eat it during the week. I eat fish at least three times a week.

The only dietary interventions I'm on are avoiding dairy and refined sugar. I still eat my dark chocolate at night though. I switch from coffee first thing in the morning to green tea by mid morning and herbal in the afternoon. Herbal = chamomile or mint usually and I now have hibiscus too.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Thu Apr 11, 2013 6:47 am

hi again :)

fyi re dietary zinc: meat a couple times a week would be a good start but not necessarily enough if other foods don't support absorption. excess dairy and refined sugar can be tough your zinc status, coffee too.. but gluten and phytates are more high profile in terms of affecting zinc absorption/retention. how many servings of grains and legumes would you estimate you are eating daily?

so anyway, if you do have grains and phytates in the mix, upping your zinc supplement to 50mg could be needed to get your levels up to the high teens. question: is your zinc product balanced with any copper? (sorry if I have already asked you that previously)

as for magnesium - please do be sure to take some of your mag with the d3 supplement and some at a diff time. if you can split your 500mg mag oxide pills easily, that could be a short term solution.

400mg magnesium from food would be a reasonable DAILY maintenance intake, once serum levels are optimized.

hope that helps!
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