My name is Jenn. I have had MS since 2007. Today I feel great. My disease progression has halted for the first time ever, and I would like to talk to anyone interested in this treatment. I am just learning about this website and I'm not sure I am maneuvering my way through it correctly, but I said if this treatment worked, I would shout it from the rooftops, so here I am an otherwise introverted person WAY outside her comfort zone who just could not sit on her hands when so many others need help. I'm not one to follow crazy "cures" or pipe dreams. I am a level-headed women with some medical knowledge and a vast group of patients behind we from around the world experiencing the same halting of their disease desperately trying to get the word out that there is REAL hope. I posted my story on my bio, and pictures of my MRIs. All the best!
All ears, no clue how to find profile or info, so of u post a link that would be amazing
moneyp wrote: All ears, no clue how to find profile or info, so of u post a link that would be amazing
Ditto. Can't access the profile. It sounds way too good to be true, and most often when it sounds that way, it is that way. I don't mean to be a downer, but without being able to access what you suggest to see, I am a skeptic.
Hi MoneyP and Bill,
I'm sorry. I'm new to this site and still learning the ropes. I can certainly understand your skepticism. I am the original skeptic. I never put any stock into the bee sting therapy or "Here just mix honey and garlic. It cured cured my cousin's MS!" However, this was logical and proven. I think when you read my profile you'll recognize that. Bill, it's due to all the crazy therapies floating around out there, that my fear is that people will not want to "try another therapy" because of "cure fatigue." I hope that is not true as this is such a simple remedy. I say remedy because it is not a cure. It is not proven to remove MS, but it is proven to halt it completely in 95% of the patients.
Here is a link to my profile and story: https://www.msconnection.org/User-Dashboard/2_inspire#/
Here is a link to a group I started LAST WEEK after my last MRI showed that vitamin D protocol does indeed work:
I'm happy to answer any questions you have.
P.S. This is the video I found initially that explains it all. The doctor is an Associate Professor of Neurology in San Palo Brazil. He trained here in the US. The video has English subtitles if you click on CC and/or Settings at the bottom. Trust me. You'll be very glad you listened to it. I will try to answer any questions you have. Please, please, please share this with anyone who suffers from MS or any autoimmune disease. Not everyone has the luxury to wait years for the clinical trials to discover what we already know! Any and all support is appreciated!
Alright, Jenn, you've piqued my interest enough to follow this conversation and to look into this some more. I am also seeing my neuro on Friday 6/24 and if I can remember I will at least bring mention of this therapy to see what his thoughts are.
This is my First time on this Site and I just Read your post. I have been Desperately Seeking a Working Treatment Option for years. I would Love to Speak with you at your Convienience. Please email me with contact info if possible. Thanks
You are welcome to e-mail me whenever you want. I'm email@example.com
How long do you have to stay on the high dose of 50,000 units of vitamin D? I heard you can only be on that high of a dose for a short time or it's very dangerous. Causes kidney stones and high calcium in the blood.
Yes, that is absolutely the conventional thinking among most physicians today. However, there are re*****ble (I don't know why it keeps putting stars there - I'm spelling R E P U T A B L E. I was not swearing, I promise..LOL) studies and articles in medical journals - not hokey websites with self-professed "experts," but legitamate studies on the safetly of vitamin D in high doses, dating back to the 80s. I can give you many links on Google Scholar to these studies. You can take way over 50,000 IU and be perfectly fine.
Renal issues are only a problem if your calcium becomes excessive. To prevent this, all patients on the protocol must restrict all calcium and drink 2.5 liters of water daily to flush any excess calcium from their system. This has been used on over 4500+ patients to date and there have been no problems in 10 years! Your parathyroid hormone is measured regularly so that the physicans are ableto carefully monitor your levels. If it drops below the low end of normal that's when things could be dangerous, but if monitored, this does not happen. If you do these two things, the protocol is perfectly safe. There is 10 years of protocol evidence to back this up. I would encourage you to take a look at this video to learn more:
The sound is pitiful, but I'm having it transcribed. That said, it is audible, but I would suggest a better mic on the next interview! ;) There is plenty of information if you want it. I'm happy to help you until you are comfortable with it. I know it sounds too good to be true, but it's not. It is a viable treatment, that is very safe, very cost effective and has changed the lives of many!
I meant to add. You have to remain on it forever. However, the issue is that most people with autoimmune disease have an issue with metabolizing vitamin D3. I'm willing to bet if you're had yours tested, it was low. The idea is to use your parathyroid hormone as a marke to measure the dose you need. The video explains that. So you would remain on that to keep your levels stable and to prevent you from dropping to low. At the point your levels are stabilized, disease process comes to a halt! Yay!
What do they want your vitamin D level to be at in order to stop disease activity? I don't know if I can find a doctor that will approve this. Right now my levels are at 40 so they say I'm in the normal range.
j5796 wrote: What do they want your vitamin D level to be at in order to stop disease activity? I don't know if I can find a doctor that will approve this. Right now my levels are at 40 so they say I'm in the normal range.
That's the thing...the reason why I'm trying to get this recognized. Most doctors are afraid of these doses. The "recommended" levels are way too low. Everyone is different, and for those of us with autoimmune disorders, we do not absorb the D efficiently, and the level at which we do absorb it is different for each of us. So there is no magic number that we need to hit. Your level needs to be tailored to you specifically. That is done by taking into consideration your initial lab work, your weight, and your PTH level. I can give you the information to the doctor in the US who treats, but I believe you need to go see her personally because in the US -- as I understand it -- an upfront initial visit is required. However, there is a doctor in Vancouver, BC, who will take Skype appointments. They will send you the list of required labs. Once you get these done and she recieves the results, she will talk with you about your medical history, your weight, explain the protocol, and let you know how much D3 (it is important that it is D3--not D2, etc.) and send you on your way. You'll start feeling better within days or weeks. Your fatigue will abate as your D gets to where it is supposed to be, and any disability you have seen in the last year will usually go away pretty soon. Anything beyond a year could take longer and although, you will see improvement, you may never get it all back, but you will definitely improve and your disease will not progress any further! Yay!!!! At the second visit, you will have a couple of labs done so that they can see how your levels are matching up and measure that your calcium is not too high. If you are restricting dairy, your levels will be fine (this is the big fear of tho doctors -- HYPER calcemia). At that point, you will have one more set of labs and a DEXA scan to keep an eye on your bone density. You will have to have a DEXA with your initial labs, and this one will be to compare the two. You will have a total of 4 appointments over a 2-year period. At that point, you are discharged, and they tell you, "Go enjoy a disease-free life." Sure beats shots and more disability, don't ya think? :) It's okay. It works! If your interested, please e-mail me at firstname.lastname@example.org I set up a new e-mail because I was having so many requestss for info. You may also go visit my new group: https://www.facebook.com/groups/freeindeedvitamindprotocol/990281581040564/?notif_t=like¬if_id=1466351245812783 and meet others on the treatment (many more knowledgeable than myself) and see patient testimonies, etc. We would be delighted to have you!!! Please don't give up! There is ALWAYS a way! Hugs!
Where is the doctor in the US? I can't relocate so this could be a problem trying to get doctors around me to do something like this. Relocating is out of the question so I don't know how this could work
Oh no, you would not have to relocate.
The doctor in the US is in Naples, Florida. Her contact info is:
Dr. Suzana Tanimoto, MD
77 8th Street South
Naples, 34102, FL
You will have to ask if they will do a Skype appointment, but I think in the US the initial visit has to be face to face.
There is also a doctor in VanCouver, BC who will do Skype appointments.
Dr. Sanja TamburicEspecialidade: Integrative/Functional/Preventative/MedicineCidade: Vancouver,CanadaEnd: 1308 W 8th Ave, Vancouver,BCTel: (1 604 710 0635)Site: http://www.naturopathiclinic.com
I have tried to take higher doses of calcium because that seems to be a constant for a lof of people with MS. And then when the doctor orders blood work done, well, then the calcium levels are too high and for me to alter my diet to get those high numbers down. But then too there is the concern for being an old woman with perhaps brittle bones and the possibility of a fall.
Weight bearing exercise will build your bones. Everyones bones develop little microfractures all through our lives. Because of this you have cells called osteoclasts. Their job is to scour your bones and break them down and then lay down new bone. Our bones are always going through this process of remodeling our bone tissue. If you look at an x-ray of a bone below the knee or some other area where you bear a lot of weight, you will see that the white portion of the x-ray is much brighter there. Why? Because your body has laid down much more bone to support the weight. They are finding now that it is not calcium that we are deficient in, but exercise to build our bones. Most of us have way too much calcium because we fortify EVERYTHING with it. Most of our drinks are always "with added calcium + D." We need more D from SUN, and more bone mass from exercise. Here's an interesting video that shows osteoclasts at work. It's pretty fascinating...well, at least to an anatomy buff like me anyway *wink*
So Pharma is catching on: http://www.businesswire.com/news/home/20160620006515/en/FDA-Approves-Drug-Application-RAYALDEE%C2%AE-Treat-Secondary
This is almost and identical treatment...not for MS, but for kidney disease. On the bright side, it is great information to show your doctors, and now pharma is doing some of the leg work for us. :)
Hi, I wanted to share these encouraging posts from today. I hope they give you some hope!
This is one of many reports I get from vitamin D, but this one is from a doctor. His results sound amazing, but the truth is, we see it in every patient! Share this with anyone who is suffering from any autoimmune disease.
"I want to share my status after 3 weeks of high dose vitamin D (90.000 units/day)
* Disease status: Relapsing remitting since 2009 and diagnosed in 2014
* Drugs I am taking other than high dose vitamin D: Interferon beta and multivitamins.
* PTH level: Still far from low normal
* Vitamin D level: Not done yet
* Tingling and numbness: Disappeared, it is now 0/10 (I used to have frequent tingling in my finger tips, feet and many other areas)
* Painful cramps in arms and legs: Disappeard, it is now 0/10 ( I used to have this symptom, but it was infrequent, it could occur every 2 weeks, but since starting the protocol, I didn't experience a single painful cramping.)
* Fatigue: Improved, it is now 4/10 (instead of 10/10 before starting the protocol)
* Dizziness and vertigo: Improved, it is now 3/10 (I think this is the main contributor to improvement in my fatigue)
* Depression: Improved, it is now 2/10 (I don't know if vitamin D directly works on depression, but I am sure that improved fatigue contributed to decreasing depression)
* Body heaviness: Improved, it is now 3/10 ( Iam thinking to play football again or go to the Gym
* Heat hugs: Improved, it is now 6/10 (I think my sweating pattern is beginning to normalize. I used to have excessive sweating to the degree of dehydration, but now I can walk for an hour without all this horrible sweating)
* Others: Improved heart racing (don't know if it is linked to vitamin D or not. I used to take Propranolo before, but stopped it a week ago as I no longer need it)
* Side effects:
Away from frequent urination and occasional constipation, I didn't have major side effects
I used to take Modafinil and escitalopram for fatigue and depression respectively, but I stopped them 2 weeks ago as I no longer need them. I found that high dose vitamin D alone is more effective than both drugs.
I lost 12 kg in the previous 4 months and I don't know if this also played a role in my improvment or not.
Thanks and best of luck for all of you."
****This man is a doctor!****
Another woman posted today that she was in the pharmacy jumping up and down showing that she could not do this 3 years ago...because of her vitamin D protocol! :) I love these storie. I hope you do to. Be blessed! Jenn :)