Reverse ms?

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labilios
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Reverse ms?

Post by labilios » Fri Dec 28, 2018 3:47 pm

Hello.
I have ppms 17 years and I am in a wheelchair few years.I can't walk,I have fatigue,leg spasms,incotinence.I wasn't diagnosed until 3-4 years ago.Even then doctors didn't give me any therapy.So,I took homeopathic remedies(I am still take them),high doses of vitamin d,I did bee venom therapy,reflexology,chiropractic,oms diet.Nothing has helped me.Unfortnately, I am getting worse.I need help from others almost all day.Has anyone revers ms or ppms?Can anyone help me?

ElliotB
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Re: Reverse ms?

Post by ElliotB » Fri Dec 28, 2018 4:00 pm

Welcome back to TIMS. Sorry to hear you are not doing well right now.

But the good news is that some people in your position have been able to reverse their MS.

I suggest you start by reading The Wahls Protocol book by Dr. Terry Wahls. Her protocol may seem radical and contrary to everything you have been told about MS BUT like you, she was in a wheel chair and she was able to reverse her MS and now lives a normal life.

There are others that have had similar successes following other protocols. Until recently, these stories were unheard of. So this is even more good news that hopefully will give you new outlook on things.

Another consideration since you mention you are taking high doses of Vitamin D would be to see a Coimbra protocol doctor and follow the Coimbra protocol under doctor supervision. There are still other options but these may be your best choices to start with.

Good luck.

labilios
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Re: Reverse ms?

Post by labilios » Sat Dec 29, 2018 12:39 am

Hello.
Thank you for your answer.I am following OMS diet,which is like swank diet.I took high doses of vitamin d under two coimbra doctors supervision

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Re: Reverse ms?

Post by ElliotB » Sat Dec 29, 2018 7:47 am

"I am following OMS diet"

How long have you been on that diet? How do you think it is helping or not helping you? What kind of diet did you follow prior to OMS?


Do you take nutritional supplements?


What kind of homeopathic remedies have you taken and do you continue to take now?


"I took high doses of vitamin d under two Coimbra doctors supervision"

How long did you follow it for? Are you still following it? Do you think it was helping you?

labilios
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Re: Reverse ms?

Post by labilios » Sun Dec 30, 2018 3:46 am

Hello.
I have been following the OMS diet for several months now (more than six) with flax seed oil, B12, multivitamin, vitamin D3 10000 and fish oil. Before that diet i was taking high doses of vitamin D3 with a lot of supplements, they prescribed by the Coimbra doctors (nearly 18 months). At that time I didn't eat glouten or dairy products. Now I eat glouten, but not dairy products. Homeopathic doctors give me various remedies. I take homeopathic remedies, many many years, more than 15. I did bee venom therapy for 18 months. I didn't see any improvements with the treatments I did, but I am getting worse.

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Re: Reverse ms?

Post by ElliotB » Sun Dec 30, 2018 8:06 am

What kind of diet did you follow prior to OMS?

Have you had your vitamin D level verified by blood work? If so, what have your levels been at?

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Sun Dec 30, 2018 9:01 am

hi labi, may i inquire as to details of the earlier high d3 doses and other supplements previously prescribed by coimbra docs, and the details of the specific multi you're using along with the 10K IU daily d3? also if you have had any other nutrient levels tested besides serum 25(OH)d3 and probably calcium, while high dosing?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

labilios
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Re: Reverse ms?

Post by labilios » Mon Dec 31, 2018 4:40 am

Hello.I followed the diet for High doses of vitamin D3.No dairy,no nuts and other foods that contains Calcium and no gluten
Prior to coimbra protocol PTH was 24 pg/ml and total 25 oh-D was 101 μg/l in the summer and 86 μg/l in the winter.After taking high doses vitamin d for a few months my pth was 22 and my total 25 OH-D was 315 μ-g/l.I haven't tested since may 2017.
the supplements from first doctor were
choline,magnesium glycinate or chloride,riboflavin,folic acid,zinc,B 12,chromium picolinate,selenium,k2,omega 3

The supplements from the second doctor were:

After Breakfast
1 R-5-P (Pre-activated Riboflavin)
1 Neural Magtein
2 Ion Magnesium
1 Magnesium Citrate
30,000 iu Vitamin D3

After Lunch
1 Magnesium Citrate
1 R-5-P (Pre Activated Riboflavin)

After Main Meal
1 R-5-P
1 Magnesium Citrate
1 Ion Magnesium capsule
1 Neural Magnesium Monday-Wednesday-Friday

Before Bed
1 R-5-P Pre Activated Riboflavin

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Mon Dec 31, 2018 6:11 am

great info, L. i will respond in a bit :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Mon Dec 31, 2018 7:34 am

hi again :) ok here come the questions!

1. looks like your d3 levels were high normal to start with. any specific rationale/evidence base for taking serum d3 to extremes?
2. do you have any records re d3 excretion rates over time?
3. any bloodwork other than d3 monitored during this period? calcium, ferritin, magnesium, zinc, other electrolytes for example?
4. was the d3 intake the same (30K IU/) with both the first and second docs?

5. can you explain why cofactor attention seems much lower under second doc's supervision?
6. were serum magnesium and other electrolytes been monitored during that high mag intake period?
7. do you have the rationale for high riboflavin intake?

8. re
OMS diet for several months now (more than six) with flax seed oil, B12, multivitamin, vitamin D3 10000 and fish oil

can you post similar supplement product, dose and form details plus timing for your current supplement regimen, similar to the way you showed supplement intakes under second doc's supervision?
9. specifically, how much magnesium is in that multi, in what form, and how do you time it in relation to daily 10K of d3
10. what does OMS diet look like for you day to day? can you itemize typical meals and snacks as closely as possible to recipe (as opposed to menu) format?
11. when was the last time you just took a break from high dose vit d3?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

labilios
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Re: Reverse ms?

Post by labilios » Tue Jan 01, 2019 1:17 pm

Happy New Year.Thank you for your answer
I hope I can answer to your questions.I didn't understand them all
1. looks like your d3 levels were high normal to start with. any specific rationale/evidence base for taking serum d3 to extremes?
-I gave the docs the blood exams before starting coimbra protocol and they thought it is safe with no calcium from foods and maybe I got feeling better.Also,PTH needed to be lower.For that Vitamin D needed to be higher.I forgot to mention 25-OH from April 2018 :575 and PTH:20
2. do you have any records re d3 excretion rates over time?
-The last exam was from April 2018.before
3. any bloodwork other than d3 monitored during this period? calcium, ferritin, magnesium, zinc, other electrolytes for example?
-Before vit D:calcium 10.2 (normal ,zinc 998.4-10.1),urea serum 30 (10-50),creatinine 0.69 (0.6-1.4),phosphorous 2.9 (2.7-4.5),folic acid >20,zinc 92.3 (70-150)
During vit D:calcium 10,urea serum 15,creatinine 0.66,phosphorous 3.3,folic acid > 20,zinc 99
Also at the end of vit D:urea serum 21, creatinine 0.62,calcium 9.7,potassium 4.6 (3.5-5.1),sodium 142 (137-150)iron 79 (37-145)
4. was the d3 intake the same (30K IU/) with both the first and second docs?
I was in the coimbra protocoll from 20 february 2017.I was taking 50.000 iu and from 25 May 2017 I increase the dose to 100.000 iu/day until until july 2017 where i took 40000 iu for 1 or 2 months from the second doctor.Then I took 30000 iu and 12000 micelized d3 until april 2018 where I stopped coimbra protocol and started taking 10000 d3 iu until today
6. were serum magnesium and other electrolytes been monitored during that high mag intake period?
-I haven't measure them
7. do you have the rationale for high riboflavin intake?
-no
8can you post similar supplement product, dose and form details plus timing for your current supplement regimen, similar to the way you showed supplement intakes under second doc's supervision?
-morning
1 vit d3 10000
1 tablet sublingual vit B12 1000 mg
I started 1 kelp every 3-5 days increasing until I reach 10-12
1 multivitamin nature's plus (ultra source of life
1 fish oil lamberts
1 tab cranberry
1 table spoon flax seed oil
noon
1 fish oil lamberts
1 table spoon flax seed oil
afternoon
1 fish oil lamberts
1 table spoon flax seed oil
9. specifically, how much magnesium is in that multi, in what form, and how do you time it in relation to daily 10K of d3
Now i take only from multivitamin and occassionaly 1/2 of teaspoon magnesium oxide for constipation
when was the last time you just took a break from high dose vit d3?
-maybe april 2018
. what does OMS diet look like for you day to day? can you itemize typical meals and snacks as closely as possible to recipe (as opposed to menu) format?
-morning
two slices of bread with tahini and 1 glass of almond milk or
porridge with oats and almond milk,walnuts and apple or raisins
last days i eat a lt of egg whites
noon
lentils, beans, rice, chickpeas or seafood or fish,potatoes
1 slice of bread
olives
lettuce or tomato salad or greens
evening
1 apple
dinner
the same as noon
Every day many years now and mostly at summer I have every day low fever temperature (37-37.5 celsius)

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Tue Jan 01, 2019 2:13 pm

HNY! wow lots of great info :) i will try to clarify as needed.

1. i understand 'maybe you will feel better' as a 'no' re evidence base for taking levels still higher. 575 is still loads.

2. i think we crossed wires re 'excretion rates'.
  • Q: did either doc (or anyone else before or since) test d3 levels in urine and/or stool while taking high d3 doses?
3. Q: is there a typo here?: "calcium 10.2 (normal ,zinc 998.4-10.1)"
i wish there were numbers for serum magnesium. also that the serum zinc levels were higher.

4. thx for the d3 intake details.

5. re cofactors. i meant:
  • Q: can you say why were there so many nutrients taken with the d3 under the first doctor's supervision, but then mostly just added magnesium under the second doc's supervision?
6. reiterating the wish for serum mag info, as noted in #3.

7. noted. re riboflavin for ms, neither do i. in fact all i have in mind personally, is a recollection of an earlier riboflavin study being roundly criticized by coimbra's peers.

8. thank you for the excellent detail. 9. i can't figure out exactly how much magnesium you are getting until i know the exact product and can read the label details per question 8 above.
important: from what i can tell so far, it looks highly unlikely that you are getting enough magnesium to cope with 10K IU of vitamin d3 each day.

11. glad to hear you took a break from high dose d3.
  • Q: how many days or weeks long was that last break, before you got back into the habit of daily high dosing?
10. thanks for the OMS diet info. i will follow up on that another time :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

labilios
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Re: Reverse ms?

Post by labilios » Wed Jan 02, 2019 8:52 am

Hello

Q: did either doc (or anyone else before or since) test d3 levels in urine and/or stool while taking high d3 doses?
-I tested D3 levels only by blood.Did you mean calcium?Also I tested ca only with blood
Q: can you say why were there so many nutrients taken with the d3 under the first doctor's supervision, but then mostly just added magnesium under the second doc's supervision?
the second doctor suggested pre activated riboflavin,micellized vit d3,magnesium citrate,ion magnesium,neuronal magtein.I followed what he said.He claimed he had ms himself and was ok with those supplements.He sent me various articles about misellized D3 etc.The first doctor suggested what coimbra protocoll says.Both doctors had trained from dr. coimbra.maybe the second was a good dealer?
-I found that link: https://www.lifeextension.com/Vitamins- ... ce-of-Life
-sorry that was wrong calcium 10.2 (normal ,zinc 998.4-10.1)
the exact exam calcium 10.2 (normal 8.4-10.1) zinc 92.3 (normal 70-150) I haven't tested serum magnesium
Q: how many days or weeks long was that last break, before you got back into the habit of daily high dosing?
-I stopped taking vit D completely on february 2018 and from April 2018 I take 10000 iu d3 daily
Do you think that fatigue and low temperature fever (37-37.5 celsius ) caused by not taking mag?I feel both of them,every day,many years now and feel exhausted
Also,do you think magnesium will help me?What type of magnesium?

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Wed Jan 02, 2019 10:35 am

re 2 Q - i did mean d3.
i'm hoping at some point practitioners start working to understand the degree to which high dose supplemental d3 intakes are just excreted into wastewater systems and from there into the wider environment. i think it's wrong to blindly high dose patients who don't necessarily absorb d3 efficiently. i prefer the idea of optimizing d3 absorption and utilization, with minimized waste, for clearly articulated health outcomes.

re 5 Q - ok sounds like individual practitioners (legitimate or otherwise) take what they want from, vs adhering to, protocol training. i did suspect this was the case, and the source of some of the problems we've encountered here. makes me wonder about the regulatory environment and practitioners' accountability, if any, when things go wrong.

re 8 Q - thanks for the link. i'm looking at the label here.
https://www.vitacost.com/natures-plus-u ... 80-tablets

this product delivers 25% of daily magnesium needs *in 3 tablets* and *before* considering the effects of added high dose supplemental d3.
  • 8B Q: when you take this product in the morning, are you taking one pill ie 33 mg of magnesium, or all three to obtain 100mg?
i strongly suspect issues with magnesium intakes, dose and timing in relation to supplemental d3 intake.
may i suggest that you could be better off first ensuring 400mg of magnesium intake daily from all food fluid and supplement sources, then adding MORE magnesium whenever supplemental d3 is taken. and still more, whenever any other lifestyle influences (eg stress (any kind, physical mental or emotional), certain medications, and/or alcohol consumption) come into play.

re 3 Q - thanks for the clarification :) to reiterate, serum zinc looked low. updated serum magnesium and serum zinc (also serum copper) data could be useful.

re 11 Q - thx for the info re the break. could be worthwhile to take another!

re fatigue: i tend to look to iron first.
your multi product delivers 100% of daily requirement *in three tablets*.
if you are only taking one in the morning, add the second at noon and the third in the afternoon.
if you are taking all three in the morning, spread out this divided dose through the day to maximize absorption.
also: this product is balanced with 100% of daily zinc needs, so it won't boost iron status quickly but it will do it relatively safely ie won't drive your low zinc down further (and - taken as intended - should help low zinc come up too, also slowly mind you).

magnesium is certainly another important player in the fatigue department. as i understand your regimen, you are currently getting between 8 and 25% of your daily needs via supplementation. with current timing, all of it will be dominated by interactions with the supplemental d3 also taken in the morning.

re temperature: various nutrients are linked to body temperature but it's difficult to say exactly which specific factors might be leading to temperatures above 37C in your case.
if you are not already doing so, it could be worth working on general daily intakes by 1) ensuring good dietary intake of essential macro and micronutrients, and 2) using your supplement product as intended, if additional inputs are needed.

re type of magnesium: boost healthy whole food dietary sources first.
time any supplements very carefully in relation to supplemental d3.
choose soluble and absorbable supplemental magnesium forms.
i most often use magnesium glycinate powder capsules, but powdered magnesium citrate drinks, and transdermal epsom salts (mag sulfate or mag chloride) delivered via baths or topical solutions aka 'oil' can also be useful.

hope all of that helps :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jimmylegs
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Re: Reverse ms?

Post by jimmylegs » Wed Jan 02, 2019 3:20 pm

ps. found a couple studies in which researchers are indeed looking at d3 excretion. good to see.

Tamblyn, J. A., Jenkinson, C., Larner, D. P., Hewison, M., & Kilby, M. D. (2018). Serum and urine vitamin D metabolite analysis in early preeclampsia. Endocrine connections, 7(1), 199-210.
  • "To our knowledge, this is the first report of vitamin D metabolite quantification in the urine of pregnant women. The method utilised was adapted from that reported by Ogawa and coworkers who quantified 25(OH)D3 and 24,25(OH)2D3 in spot urine samples (1 mL) from healthy male subjects (n = 20) pre and post vitamin D supplementation (40)."
Ogawa, S., Ooki, S., Shinoda, K., & Higashi, T. (2014). Analysis of urinary vitamin D3 metabolites by liquid chromatography/tandem mass spectrometry with ESI-enhancing and stable isotope-coded derivatization. Analytical and bioanalytical chemistry, 406(26), 6647-6654.
  • "The method was successfully applied to urine sample analyses and detected the increases of the urinary 25(OH)D3 and 24,25(OH)2D3 levels due to vitamin D3 administration."
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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