34 votes

Help With MS

I’m writing this for Deacon, I found his comments on this in Nonna’s lovely care giving thread, he was hesitant to write a post about it, but hopefully this will generate some attention and help. If anyone has any ideas or knowledge on the topic please share here.

Our daughter has been diagnosed with ms. She is 17. Ms doesn't run in our family on either side, and she started going blind in May. We thought it was her contacts, and that she was having a reaction to the plastic or whatever they are made from, so she stopped using them but it got worse. Now she can't even walk, and she sleeps all the time.
I got her to eat a bit of yogurt, half a piece of toast, and a small bottle of Snapple. I have also tried getting her to eat coconut oil, royal jelly, but nothing helps. When she does eat she just throws it all up. She is always sleeping, and has no energy.

When she stands up she gets dizzy and sometimes falls down, this scares me, as I can’t do much to help her up. As I have stated here before, I am not well. I have a bad back, and can't help her much.

The Dr. put her on meds that would run 5 grand a month, and make her feel worse than she already does.

Her life is still ahead, as mine is behind. She is way too young.
I have talked to some on here and got some ideas ,but if she can't hold anything down, nothing is going to work. I am selling off things we saved for the future to get more supplies just to end this for her and us. I get to be the caregiver when at a time in my own life, I have a harder time just helping myself

I have stated before, I used to look for the good in all things, even strife, but anymore I see no good at all.

This is clearly a heartbreaking situation for Deacon o if anyone here has any suggestions or knowledge on the topic, please let him know. If nothing else, maybe send some thoughts and prayers his way.

***Updated*** More info from Deacon

-She has gotten most of her vaccines,

-Never received the gardisil shot

-After watching how they made "meat" became a vegetarian more than 8 yrs ago

-She was supposed to be a downs syndrome baby(we were told to abort!!)

-Born the pinkest fattest baby they had seen (told this by the dr's and nurses)

-She went blind in one eye last May, got that back, then the other eye went blind.

-Put her on ginger and turmeric in water (relieves inflammation) was working until she started getting sick (which was the same time she started taking tecfadera (ms meds)

-She has not been able to walk for over a month now.

-Her eyes do not track at the same time right to left. This causes dizziness.

-She complains about her legs hurting or being numb. They are also cold, one is swollen twice as big as the other one.

-She suffers motion sickness

-Hasn't been hungry or thirsty...but I push her into both

-Her oxygen levels run between 96 to %99,saw this on the finger monitor deal. Pulse and heart within norms, her speech is slurred like she has been drinking.

-We took her the ER yesterday morning, wanted to give her 3 days of steroid injections, got back around 9:30-10 pm

-Her Dr. says she has a full blown case of MS, one he has never experienced before as it all came on too quickly, he is at a loss, and called his buddy from U of M who wants to see her

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Found this article on MS with some interesting suggestions.

http://raypeat.com/articles/articles/multiple-sclerosis-horm...

Toward the end of the article this biochemist suggests some supplements.

What he essentially says is that insufficient active thyroid hormone (T3) and too much estrogen (lack of pregnenolone and progesterone) are involved.

And here is a second article from the same source that is just a tad easier to read which essentially says the same thing and makes the same suggestions:

http://raypeat.com/articles/articles/ms.shtml

"Bend over and grab your ankles" should be etched in stone at the entrance to every government building and every government office.

deacon's picture

Henry,

Thank you very much for ALL your comments,I have read them all so far.
I started with the 2nd link :)
Been reading for a while,might need to re-read,OK, have to
I have learned so much,and willing to learn more
again,thank you for your efforts,me and mine appreciate it
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

risk factors

I had an aunt and step-mother who had multiple sclerosis. I do not have much to add to the conversation except they both smoked, didn't eat much, both avoided vegetables, and drank large amounts of coffee. Only two people is anecdotal and not a study but I have always wondered about those similarities. I am not suggesting your daughter smokes or drinks coffee which may or may not increase one's risks. However, I looked up and found this one doctor's thoughts on risk factors.
http://qjmed.oxfordjournals.org/content/98/12/895.full

Viral infections and animal fat, according to this doctor, increase the risk of getting MS. I remember my step-mother having setbacks with MS if she had the flu so maybe there is something to that in ways we don't understand. I'm not offering hope here but maybe trying to protect your daughter from exposure to viruses and avoiding animal fat are things that could be done to not aggravate the MS. My best wishes to you in your struggle.

I've read through some but not all

of the comments. I have MS (newly diagnosed) and have spent hours researching it. This is what seems to work for me:
No meat, lots of fresh fruits and vegetables.
Vitamin D and fish oil are both essential for MS sufferers
Sunshine not only provides vitamin D but improves the mood/attitude

Spend some time researching the Hematopoietic Stem Cell Transplantation (HSCT) Study that Dr. Richard K. Burt is leading in Chicago. Dr. Burt is my "when all else fails" plan. From what I have seen he isn't willing to call it a cure but his patients are claiming to be cured from MS- worth a look into it.

Good luck!

Gluten alternatives

Deacon, I'm so sorry to hear that your daughter is going through this.

We have several Celiacs in our house. We have found that Traders Joes has lots of options: Udis bread and buns, lots of Mexican food like tamales etc....Costco had Udis bread in freezer fairly cheap..

Someone mentioned oils: butter is good esp if it is grassfed . Lard if grassfed, avacodos are really good and satisfying. Extra virgin olive oi. Again I like costcos Kirkland extavirgin oil.

Good luck in whatever you try

deacon's picture

Excellent

And thank you,tomorrow I will look into them ideas,now I am exhausted
d

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Someone with MS should stay away from alternative grain

Someone with MS should stay away from alternative grain "gluten free" products, along with tradition "gluten containing" foods. They are still highly processed, they also have anti-nutrient properties that can damage the gut and brain and many tend to be high carb. All of this is bad news. If you look into the Wahls Protocol, you'll see that none of that stuff recommended.

deacon's picture

a while back

I was looking into this topic,got distracted by needing to crunch law courses
Got behind on both,now,as it stands I lack both.I do not know enough about either. I was looking into the above comment to see what is was made from,you saved me a bit of time thank you
d

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Glad to help. Yeah, I've been

Glad to help.

Yeah, I've been there and done that with the autoimmune issues and trying alternative grain stuff. It doesn't work. They just make you feel a different kind awful. Dr. Wahls and Dr. Perlmutter are the way to go.

deacon's picture

very appreciative

Glad you did help,I truly needed it
I went a bit further in debt and bought a rife genny
one of them damned if you do,damned if you don't kinda deals
But I might be able to recoup some loss by using it
d

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

What is a rife genny?

What is a rife genny?

deacon's picture

Generator

Sorry,I shortened the name
But it's one of these

http://altered-states.net/index2.php

http://www.rifevideos.com/dr_rifes_true_original_frequencies...

http://www.natch.co.uk/downloads/SigJenny/SigJenny.html
Up there is a partial list for them,and what they are
The one I ordered has 700 frequencies,but more can be added to it
There are also youtube videos of the sound it creates to kill internal vermin
d

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

http://www.sitochiropractic.c

Please go to Gnostic Media podcast 175...

...Jan Irwin interveiws a doctor, can't remember her name, but she had a lot of health info. The part about MS is towards the end, but you need to watch the whole thing. One of the main thing that sticks out is that she is not eating meat...which means she is not getting enough FAT and CHOLESTEROL. Good luck, y'all.

link. https://www.youtube.com/watch?v=ysmNMfKHJVk

deacon's picture

Thanks

Will do
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

bigmikedude's picture

Deacon

As with all of these threads I read on DP, you, and each and every one of you that have had similar threads, have my heartfelt sympathy for some of the horrible cards that life has dealt many of you.

I often feel bad for not commenting on so many of them, although I do see them all, but as it is, I am only a man, and nothing I know, or can say will ever fix these things, and unfortunately I'm just not one wired for being capable of sympathy expression when I know it really isn't going to help you or your loved one in any way, and when I know there is nothing I know that will eliminate the problem for you or your loved ones. So, more often than not, I just refrain from comment on them so as not to trash up that kind of thread with unhelpful comment clutter. I'm sorry for that, but it's just my style. Everyone is different. To me, sympathy offerings don't fix someone's problem.

I hope everyone who has ever wondered assumed that already, vs. just thinking I never gave a shit.

So on that note, for you Deacon, and every other DPer who has been dealt a bad hand in life, I wish you all the best you can ever get for your situations.

bmd

Add a upvote heart.

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bigmikedude's picture

Paul, I've always

upvoted every one of these threads I've ever seen, whether I commented or not.

Michael (and the DP) benefits from your care, dude.

Agree, let the big dude know.

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deacon's picture

LOL

I knew a long time ago you were a good guy,tis why I consider you a friend of mine.
I agree with you sympathy doesn't cure a thing,I don't look for it,I look for answers,stress doesn't disengage me from looking,it gives me more resolve.
Like you,I'd rather give an honest answer than just a snot rag after the fact
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Has your daughter ever had

Has your daughter ever had head or neck trauma? I did in the army, but the symptoms didnt show for over a year.

I had "MS symptoms" for about a year. Headaches, face numbness, tingling limbs, pain everywhere,vertigo, temporary loss of vision, falling down the stairs, two trips to the hospital and numerous doctor visits.

Upper Cervical...NUCCA Chiropractic reversed it all. There is hope. Montel Williams even reccommeds it. haha

Some studies suggest that MS is sometimes exacerbated or caused by a misalignment of the C1 vertebrae of the spine. My C1 was tilted 11 degrees, putting pressure on my brain stem ad causing all kinds of neuro problems that were related to unbalanced cranial and cervical pressures. It's miserable and hopless feeling to live with these things.

Check it out! It saved my life. I'm 28 and was pretty down for a while. Now I'm back to normal after 1 year of extensive treatment.

Too add....I know this sounds strange...but I was doing two chriopractic visits per week for about 6 months and I swear you can actually feel your nerves heal themselves and come back to life. :)

http://www.nucca.org/

deacon's picture

UPDATE

Had a meeting with her dr today,after spending hours and hours researching comments,links,and videos,backtracking when necessary.I printed off some literature.1 was about LDN and MS,printed the testimonials from people using since 2007,Printed off the lyme and LDN,and how it might help,Printed the main page of how DR Bihari's helps patients with MS using LDN...And I got nowhere,the DR told me it was experimental at best with no conclusive evidence.
Actually he only glanced at each page without even reading.
He wants her to start taking Tysabri,which has more bad reactions,including death,whereas LDN has none that I could see.
There is 2-3 more ideas I got from here that I didn't tell him about,none of which is a med by my standards
Our next step is to see if there is a LDN friendly dr she can go to
She turns `18 next month,her dr has this crazy idea that she will just do as he says with no questions asked.I already warned him how she is,as she is worse than me when man made are concerned. She wants no part of taking of pills nor injections
I want to personally thank each and every one of you for your time,patients
and all the info I received.
I forgot something.We told her dr we wanted a lymes test done, using the LDN would have killed 2 birds with one stone
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

"she is worse than me" :D

The LDN seems cool. I am much like her in my reluctance toward that which is man made, yet I would do the LDN. I'd probably even try it to ward gluten sensitivity.

deacon's picture

Her reluctance

comes from what she saw me go through,as well as what she went through.
Before we go see them dr's,we both research,and most meds cause more damage than they 'cure'. This latest injection can cause death from the simplest of virus's as it lessens one ability to fight it off.
LDN does none of that,from what I can tell,it causes no adverse harm.
I did not mention to the dr about what you gave me,He wouldn't get it,nor would he help with that,but,it is something I plan on doing for her,and myself as well.And he has no reason to know,the daughter doesn't want to see any of them again.Just like dear ole dad :) I try to cure my own ills with info I learn here and there,when this hit, I was behind the 8 ball,and caught me off guard.I had been researching different diets as she is a vegetarian.
Thank you much
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Arrgh! :D

I just wrote a long-winded update for my previous comment. I then pressed "Save" to repost it, and I lost it all as you had in the meantime posted a reply. When will I learn to use notepad! :D

I'll try again here. I'll probably skip the details of my friends' stories. A few comments down Paul_S mentions something that I briefly ended my last comment with. Before really going nuts with discovery of all the other things mentioned here and on Nonna's post, first find out if she's gluten intolerant. Does she eat a lot of toast? Has she ever tried removing gluten from her diet? Gluten has two different components to which sensitive people react. Some people are sensitive to both, and some are sensitive to just one of them. One is glutenin and for the most part poses problems of digestion and general nutritional uptake. The other is gliadin. I brought "gluten" up in my last comment because of this. Gliadin functions as an opioid on opioid receptors. Naltrexone blocks opioids by blocking the receptors. I therefore assume Naltrexone would block the uptake of gliadin. It makes me wonder how many people diagnosed with MS are actually hypersensitive to gliadin.

deacon's picture

No,not a lot of toast

or breads for that matter,she does like to eat it.The biggest problem so far
is in what to replace it with.The amish here moved away from wheat and replaced it with spelt (there reasoning is different than ours).Theres is the wheat itself,spelt is not gmo. But from what I read spelt isn't much better or different than wheat concerning intolerance.
What I am looking into is an LDN based group that points to dr's in your own area.
Some of the bigger cities might,its just the matter of finding them.I am not done with this yet,I see it as a way to help more peoples,shut down some of the big pharma influence,and expose some of the fraud involved with them and kickbacks to the dr's who hand that crap out like candy.
That dr earlier wouldn't even look me in the eye when he denied her the LDN. Which told me more than I needed to know about him and his practice.
You bring up some great points about MS and gluten intolerance.I had been looking into some of this a while back before the MS deal,SO I not so sure she has it.I honestly believe it is a combination of things.
I wanted to ask about them links you gave me.The CBD,I am unfamiliar with that,4 people gave me the same advice,does it work like it says it does?
I have used MJ in the past,that works for migraines,and calms my nerves in the back,does it work the same way,but with the THC removed?
LOL,I noticed I gave you 2 links both the same,just as you did.
d

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

By all means, look for another doctor.

Did that doctor at least do the test for Lyme disease?

“It is the food which you furnish to your mind that determines the whole character of your life.”
―Emmet Fox

deacon's picture

Lymes test?

Thats a big NO,we did get a second opinion,which is why he felt compelled to act this last weekend,without that,it would have been me trying to get to eat and drink anything.
up to this time,she has had no need for any dr's.We do have an appt with a GP
at which time,I will ask about the LDN,and I have the paperwork printed off for the lymes test.
What I found interesting is that LDN helps with both,and has no side affects.
deacon

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

B-12 Can't hurt might help a lot. Inexpensive,

A must for vegetarians.

Just get B12 injection or sub-lingual B-12 drops or tablets.

Were lesions detected that confirmed Dr's diagnoses?

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