This Is MS Multiple Sclerosis Community: Knowledge & Support

Mr B

What does CIS stand for.

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Sometimes we need to agree to disagree
freedom of speech and adult debate is so important for us to learn

clinically isolated syndrome

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Right now Im trying high dose vitamin D and Im pretty stable at this point. But I think if I begin to progress this will be my next step because there is evidence that it promotes an anti-inflammatory immune response through the development of regulatory t cells. If this fails I would go for HSCT as the final step (pending money). So I hope this works for you Mr. B and keep us up to date on your progress.

I do about 8000iu a day but I also sunbath 2-3 times a week. I find if I take 10,000 or more I get some dull ache in the kidney areas. might just be me imagining it but with the sunbathing I should cut back on supplementation.


Coming off Interferon in March so that will be the acid test in regard to HW, diet and supplements.

CVf, you balancing your mega D3 regimen with cal mag and zinc? pls say yes!

mrb, pls remind me if you are doing the same. also pls say yes

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

700mg of Mg, 15-30mg zinc, 200mg of Ca


BTW - I got my Mum on Mg and she was saying its great she used to suffer constipation but now its twice a day - which is probably good as she has had bowel cancer and doesnt want the nasty stuff hanging around.

ok sounds good great news re your mum!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

JL I don't currently monitor anything but serum 25D3 and calcium. I've been on 40k/day on d3 since October 2010. My blood serum is at 250 for D3 and calcium is normal. I feel good and have not had any major relapses since on this dose. In October I switched to 30k/day and will measure my D3 again in a few months. Ill probably stay on this another year and see what happens. If I relapse I will go back to 40 k/day. But I think this is as high as I will go with D3. Hookworms would be my next choice if things get worse.

It appears from literature that people can have widely differing 25d3 levels with the same supplementation. This could be due to other factors such as zinc and magnesium. Next time I see my neuro ill ask for zinc and magnesium levels.

k yea that 40,000 per day is the rate at which the risk of hypercalcemia gets high. glad your calcium is still normal - do you have a total or ionized calcium result, with units?

http://emedicine.medscape.com/article/240681-overview
A normal serum calcium level is 8-10 mg/dL (2-2.5 mmol/L) with some interlaboratory variation in the reference range, and hypercalcemia is defined as a serum calcium level greater than 10.5 mg/dL (>2.5 mmol/L). Hypercalcemia may be classified based on total serum and ionized calcium levels, as follows:

Mild: Total Ca 10.5-11.9 mg/dL (2.5-3 mmol/L) or Ionized Ca 5.6-8 mg/dL (1.4-2 mmol/L)
Moderate: Total Ca 12-13.9 mg/dL (3-3.5 mmol/L) or Ionized Ca 5.6-8 mg/dL (2-2.5 mmol/L)
Hypercalcemic crisis: Total Ca 14-16 mg/dL (3.5-4 mmol/L) or Ionized Ca 10-12 mg/dL (2.5-3 mmol/L)

fyi zinc status is poor in ms patients and affects absorption of d3 (my dose-response to d3 supplementation tripled after addressing my zinc deficiency). also zinc is needed for correct functioning of the urea cycle and if your status is poor your uric acid could be low (also typical of ms patients).

magnesium status is also poor in ms patients so if you start to feel some of the symptoms of low magnesium like muscle stiffness or pain, fatigue, muscle tics, irregular heartbeat, etc etc etc, you might want to get a test for that too.

zinc: aim for 18 umol/L
magnesium: minimum 0.90 mmol/L

i also looked at calcium in healthy controls and they appear to hang out just a smidge above the middle of the normal range.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Thought I'd bump this thread as I have not been active on the forum for a few months.

19 months since I started Helminthic Therapy and 22 months since acute Optic Neuritis attack. Came off interferon 5 months ago

AT present generally very well and coping with 80 hour working week in mining industry working 14 days straight followed by 7 days leave. Only systems are occasional tingles in feet or hands and slight blurring of left eye vision. Sticking with Jimmylegs orientated diet and supplements.

Would like to hear from other HT pioneers but I guess we are all doing well and not so motivate to post?

awesome news, mrb!!!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

(and pls let me know if you get any bloodwork done )

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Great threat mrbarlow

Do you happen to know what species of hookworm you are receiving?

Is there any risk of serious infection if you were to later go on a high potency immunosuppressant like cyclophosphamide?

Are there any other significant risks with hookworms?

Has anyone done any randomized blinded trials in MS with hookworms?

Species - Necator Americanus

Hookworm cant multiply inside you so cannot see a direct risk from immunosupressants other than if they cause an infection in the gut at their feeding sites.

Only significant risk is malnutrition that occurs in heavy infestations which is avoided by giving a controlled dose

Double blind trial - yes - at Nottingham University (UK). Look up WIRMS

Thanks

Here is the clinicalTrials.gov link for those interested: http://clinicaltrials.gov/show/NCT01470521

25 live hookworm larvae vs. water placed on upper forearm

Estimated date of completion is 11/2014; we'll see how it goes

I wonder if the two groups will be unblinded given the local skin reaction your described.