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My expierence with Coimbra protocol
Posted: Sat Dec 19, 2015 12:59 am
by vilnietis
Hello,
I decided to collect all information about my experience with high vitamin D doses into one document. Here is a link to it:
You will also find Coimbra's guide about protocol. Guide is given to all patients, who are starting high vitamin D doses.
Re: My expierence with Coimbra protocol
Posted: Sun Mar 26, 2017 11:40 am
by mrtmeo
How are you doing now and what dose are on?
Re: My expierence with Coimbra protocol
Posted: Thu Jun 22, 2017 8:42 am
by TeresaL
Have been in D protocol for 1.5yrs. Has stopped attacks but not helped w walking problems, nor reverse damage Had MS for 30yrs.
Re: My expierence with Coimbra protocol
Posted: Sun Jun 25, 2017 7:43 am
by Izzy00
I am currently off Tysabri, no infusion since April 13, 2017. I am having a rebound relapse. My neurologist closed his practice. I couldn't locate another infusion center. My new dr. has put me Tecfidera, it has not stopped this rebound nor had time. I know it will not most probably.This is a serious event. I have been searching the internet. I ran across this protocol, wondering if it has been tried at home without dr's. I am sure it has been, I know it's not advised.
I cannot pay or get all the needed lab. I can get some.I can work and get some of this done. I have been looking through video's and boards for a week or so. I have upped my D. Started on a calcium restricted diet. Water water water. etc trying to get as close as possible B 2. Looking to this place for some guidance
Re: My expierence with Coimbra protocol
Posted: Sun Jun 25, 2017 9:35 am
by AntonioBR
Izzy00 wrote:I am currently off Tysabri, no infusion since April 13, 2017. I am having a rebound relapse. My neurologist closed his practice. I couldn't locate another infusion center. My new dr. has put me Tecfederia, it has not stopped this rebound nor had time. I know it will not most probably.This is a serious event. I have been searching the internet. I ran across this protocol, wondering if it has been tried at home without dr's. I am sure it has been, I know it's not advised.
I cannot pay or get all the needed lab. I can get some.I can work and get some of this done. I have been looking through video's and boards for a week or so. I have upped my D. Started on a calcium restricted diet. Water water water. etc trying to get as close as possible B 2. Looking to this place for some guidance
Hi Izzy,
As you already know this Protocol can't be followed without a doctor's supervision.
I do not know if you have knowledge of the different (costs - $$$) between Coimbra and Conventional Drugs.
The treatment with Tysabri or Tecfidera is much more expensive than Coimbra Protocol (only lab tests, doctor appointment 2x or 4x per year, vitamins, minerals and DHA).
I am reinforcing this because if you could pay for Tysabri and Tecfidera then you will surely be able to pay for Dr. Coimbra's protocol.
(Of course, it changes depending where are you from - because some countries have a Public Health where they ''give'' MS drugs to their patients.)
If possible let me know more about you.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 8:43 am
by Izzy00
Biogen paid for my Tysabri, Insurance is paying for my Tecfidera. No it won't pay for the Dr's consultation's or lab work for this. I can get a D test. I don't know how often. In the past I have tested at 13 no higher than a 34.
I can get a bone density every 2 yrs. I just had one. I am 54 soon to be 55.
I don't know what lab it would pay for but it has to be in Texas under state insurance, so my family dr would have to do it.
(ha ha) he might though.
I am not on the Coimbra protocol.
I have upped my vitamin D to 60.000 i.u a day of D3 I take D2 mag I am off dairy and calcium.
doing the water.
I think this is safe, will it help?Will it hurt? I don't know. It seems foolish of me not to try.I am also taking Tecfidera for a month now.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 8:55 am
by NHE
Izzy00 wrote:I am currently off Tysabri, no infusion since April 13, 2017. I am having a rebound relapse. My neurologist closed his practice. I couldn't locate another infusion center. My new dr. has put me Tecfidera, it has not stopped this rebound nor had time. I know it will not most probably.This is a serious event.
Yes, if you have immune reconstitution inflammatory syndrome (IRIS), then you should seek treatment for that ASAP.
Lethal Multiple Sclerosis Relapse After Natalizumab Withdrawal
Neurology. 2012 Oct 24. [Epub ahead of print]
- Natalizumab dramatically reduces relapses in patients with active multiple sclerosis (MS), but it may induce progressive multifocal leukoencephalopathy (PML).(1) A rebound of MS or an immune reconstitution inflammatory syndrome (IRIS) were described after natalizumab withdrawal, even in the absence of PML.(2,3) Very few data concerning the potential severity and the neuropathology of this event are available. We report the case of a 50-year-old patient with MS who developed a fulminating relapse 3 months after stopping natalizumab, leading to death despite intensive care and immunosuppressive therapy. Radiologic and neuropathologic findings provide interesting data regarding the nature of the rebound.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 10:05 am
by Izzy00
My dr isn't doing anything, except putting me on the Tecfidera, I have been on it a month. I have been off Tysabri nearly 3 months.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 12:15 pm
by NHE
Izzy00 wrote:My dr isn't doing anything, except putting me on the Tecfidera, I have been on it a month. I have been off Tysabri nearly 3 months.
It may be wise to ask for a round of IV methylprednisolone.
Here's what Tysabri's prescribing information has to say about IRIS.
https://www.tysabri.com/content/dam/com ... mation.pdf
Immune reconstitution inflammatory syndrome (IRIS) has been reported in the majority of TYSABRI treated patients who developed PML and subsequently discontinued TYSABRI. In almost all cases, IRIS occurred after plasma exchange was used to eliminate circulating TYSABRI. It presents as a clinical decline in the patient’s condition after TYSABRI removal (and in some cases after apparent clinical improvement) that may be rapid, can lead to serious neurological complications or death, and is often associated with characteristic changes in the MRI. TYSABRI has not been associated with IRIS in patients discontinuing treatment with TYSABRI for reasons unrelated to PML. In TYSABRI treated patients with PML, IRIS has been reported within days to several weeks after plasma exchange. Monitoring for development of IRIS and appropriate treatment of the associated inflammation should be undertaken.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 2:22 pm
by Izzy00
Thank you for that, I have had some small dose paks. I am going to ask for an I.V also. I was aware of that this might happen when my old neuro left. I just could find a replacement
I upped my D immediately. I knew the importance. I ran across the Coimbra Protocol a few days back. IRIS and rebound are (the same but different) IRIS is after PML. I don't have PML. I do however have rebound. It's all dr jib jab for sick sick sick.
.
Re: My expierence with Coimbra protocol
Posted: Mon Jun 26, 2017 4:51 pm
by Izzy00
Corizones also deplete Vitamin D. I do hate that.I also do understand the need for them in an acute relapse. I am between a rock and rock
Re: My expierence with Coimbra protocol
Posted: Sun Jul 09, 2017 8:31 pm
by mrtmeo
Doing super high dose vitamin D without checking urine calcium and PTH is just wreckless.
You can potentially blow out your kidneys and/or spread calcium thru out the body tissues including the brain.
It's not safe to do without some medical monitoring.
Re: My expierence with Coimbra protocol
Posted: Sun Jul 09, 2017 9:13 pm
by ElliotB
"Doing super high dose vitamin D without checking urine calcium and PTH is just wreckless."
This is very true, but you can do high doses, up to 40,000 IU without the need for bloodwork (according to info that has been posted about the Coimbra Protocol). It is possibly a good idea to avoid foods high in calcium anyway. Foods high in calcium are not limited to dairy products although my thought is that dairy products by their nature should probably be avoided by pwMS, especially if taking higher than typically accepted doses of D3:
Top 10 Calcium Rich Foods
1) Raw Milk. 1 cup: 300 mg (30% DV)
2) Kale (cooked) 1 cup: 245 mg (24% DV)
3) Sardines (with bones) 2 ounces: 217 mg (21% DV)
4) Yogurt or Kefir. 6 oz: 300 mg (30% DV)
5) Broccoli. 1 ½ cup cooked: 93 mg (9% DV)
6) Watercress. 1 cup: 41 mg (4% DV)
7) Cheese. 1 oz: 224 mg (22% DV)
8) Bok Choy.
Who would have thought that some veggies were very high in Calcium!
Re: My expierence with Coimbra protocol
Posted: Tue Jul 11, 2017 1:42 pm
by jimmylegs
an ex-vegan like me for one lol. they do say 'never say never' but i am reasonably confident that i will never do the coimbra protocol. not based on my horrific experience with cofactor depletion after long term high dose (not mega dose) d3.
Re: My expierence with Coimbra protocol
Posted: Tue Jul 11, 2017 4:57 pm
by ElliotB
What is "cofactor depletion"? What dose of D were you taking?