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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deacon's picture

Paul

I feel bad,I wanted to personally thank you for all your help,it means a lot.
I have taken that advice already about the sub-lingual,I have been making her fruit smoothies with vitamins,she is talking better,and today,I found her walking around the kitchen looking for something to eat. As far as injections
I don't see that happening unless it is life or death :)
deacon

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

No worries, mate! I'm sure this as been hectic for you.

Does she have the lesions that confirm the diagnoses of MS.

They show up in Catscans, MRIs and Ex rays.

Without confirmation of lesions they are don't know what they are talking about.

That would make giving that drug criminal negligence IMO.

I am waiting to get the scanned pages to send to you. I don't have a scanner.

You can also find much of the information in Rare Earth' Forbidden Cures.

I am pleased to hear that she is benefiting from additional nutrition.

You can safely double down the nutrition. If it speeds improvement then she's not getting enough.

Best wishes for you and yours.

Free includes debt-free!

deacon's picture

lesions,yes

But the way I read it,it is a loosely used word and can mean anything
If memory serves me,lymes also causes lesions ( I might be wrong about that)
I have been reading so much,some if all gets scrambled,but the reading wasn't just about this topic,it has been many,most of which I'd rather not have a need to learn,but,it is what it is.And I have to do it to survive
I have that book you mentioned,I might try taking vitamin/mineral supplements that are given to pigs,seems pigs are close to our own DNA,and it just might work at revitalizing my body,if it works on the first guinea pig,I might line up another one :)
d

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

Just what is MS anyway?

my understanding is it is autoimmune that attacks the myelin sheath. What is that? Myelin is an insulating layer, or sheath, that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances in the brain. Well guess what, so does Lyme.

Do you see why some posters are saying she needs more fats.

Interestingly they know what MS does but of course they don't know what is causing the autoimmune disorder.

So MS is a symptom of a condition but they don't know what causes it.
Just like rheumatoid arthritis, lupus are auto immune but what caused, or is causing it? They really don't give a shit because they can make lots of money on treating the symptoms with immune suppressing drugs that cause lots of other problems so they can make more money

deacon's picture

I agree

All them diseases you listed have the same thing in common,and dr's don't know what causes any of them,1 commenter mentioned he was diagnosed with lupus,but turned out to be lymes !
DR's don't really care to diagnose or do their own research,they depend on pharma way too much.This is why I don't go to them unless I have no choice.
The daughter has just about what you describe in comments about your GD,this coupled with a few others here,really had me wondering about lymes vs MS.
The ophthalmologist said she had a mimic,which could be anything.
sorry to hear about your GD, I wouldn't wish ill on anyone,wish I could help,but I can't help my own yet.
deacon

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

Just use the human ones I wrote about.

It's what I've been taking when money runs short for Wallach's products.

Selenium needed to clear lesions. Lots of Tumeric, Acai, Milk Thistle, Resveretol ets, helps with inflammation.

This should clear it up in about six month if the doses are high enough.

Free includes debt-free!

I missed something.

What was the second opinion? I hope it wasn't from a doctor the original doctor sent her to.

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

deacon's picture

Our 2nd opinion

was another neurologist,his was another neurologist of his choosing.One who agrees with him. He wants her on shots once a month,the daughter isn't having none of that :)
d

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

No No No!

No shots. Deacon you have not told us how her MS was Dx. Was it just by a neurological work-up, did they do brain scans or MRI's that showed lesions. If they have Dx on just symptoms tell them to fuck off.

Did you know that optometrist's have a machine that can see the back of the optic nerve and can Dx MS.

My GD is having a bad flair of Lyme right now. Her symptoms are almost identical to your dtr's. Took her to her LLD in NH and he wanted to start her on Doxy right away.

Well I went Monday and on Monday night gave her the first dose of Doxy. Tuesday morning she woke up and within five minutes she got hit with the headache from hell. She claimed the whole right side of her face into her ear and her eye was burning. She was sobbing from the pain and was nauseous. I gave her two tylenol and (thank God) in twenty minutes it calmed the headache down. Gave her the second dose of Doxy and went to work.

I called on my break and my BF told me she was much worse. Couldn't even stand up and was now complaining that the right side of her tongue, her cheek and lip was tingling and numb.

This is known as a herx reaction and all lymies know it well.

When Doxy is started it kills off lyme bacteria very rapidly. It causes a cascade of inflammation which is known as herx. It can be a worsening of existing symptoms, and or knew symptoms.

I stopped the doxy immediately because she could not eat and if she can't eat then she would never be able to hold the doxy down. I put her back on samento and banderol (these are the herbs in the Cowden protocol for Lyme) by late afternoon yesterday she was much better.

She was able to walk and take a shower. Her cheek and tongue are still numb but she is not as dizzy.

I discussed these herbs with her Lyme MD and he said he does use them. He wanted to treat her with Doxy first and then switch to the herbs after. He said he sometimes uses them first if the patient cannot tolerate the doxy and the herx reaction is too severe.

Interestingly her Lyme MD dx and overgrowth of yeast by looking at her tongue. Wanted her to start nystatin.

Lyme has the ability to suppress the immune system to the point that it can reek havoc on all body systems.

Somehow you have got to get this kid to a Lyme specialist and started on an appropriate antibiotic. If she has a herx reaction, and I am willing to bet she will, you will know without a doubt it is Lyme and maybe co-infections along with it.

deacon's picture

Forgive me

I got lost in studying,reading and getting down to the nuts and bolts
sorta there.
She is not willing to take ANY shots the dr's offer
She has had 2 mri's which they say show lesions,I have an appt with the neurosurgeon to see both MRI's,not taking their word for it,and not going by what has been written ( you can imagine how that dr felt upon that request)
She did go see and ophthalmologist,he gave her a fist bump for having,what he called mimic MS. He certainly didn't see what the nuero said he saw.
I have her taking turmeric,ginger,royal jelly,b-12,v-d, I mix this up into her fruit smoothies
She is having pain in her R eye,and says her tongue feels funny, (like when you burn it)and food tastes funny.
She is getting tested for lymes,but around here,that process is slow. I took printed info to her dr,about lymes,LDN,and how LDN can be used for both symptoms,he scanned them a bit,said he wouldn't order LDN for her,but wanted her to takes shots once month,these shots can cause death amongst other bad things (he was fired)
The rife generator purportedly heals what cause this affliction,whether it be lymes or MS
She is getting better,even making her own meals again,walking around and picking on her siblings,so things are looking up in that respect
Looking into a dr who can fill the LDN,as I found it cause no side effects
I really appreciate your help through all this
deacon

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

Wow Decon

Her symptoms are almost identical to my GD's

I did get a call back from my GD's LLD today.

He felt her symptoms from taking the doxy was definitely a herx reaction. She is terrified to start the doxy again so the MD has prescribed a different abx.

Here is what is so strange. We have to young girls with pretty much the same symptoms. One takes Doxy and has a worsening of symptoms almost immediately. To be honest Decon I was questioning my GD's Dx and wondering if in fact it may be MS. After seeing what two doses of Doxy did to exacerbate her symptoms there is no longer any doubt in my that my GD has lyme and not MS.

deacon's picture

Peggy R

I found this
http://www.healingwell.com/community/default.aspx?f=30&m=130...

http://www.colloidsforlife.com/silver_Lyme_Disease.html

http://www.livestrong.com/article/213930-colloidal-silver-ly...
Colloidal silver can be made at home,using 2 .999 silver rods,a 9v battery and 2 wires to connect the battery to the leads,that are suspended in
distilled water,a pint takes about 5 hrs,a qt twice as long,i use a laser to see the silver particles in the water...and its pretty cheap to make
But yes,I do agree about the symptoms between the 2,I am leaning in that direction,and away from MS.
d

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

Probably repeating same advice from previous comments

But I didn't read all the comments yet.

Vitamin D3 + K2
Cannabis oil suspended in coconut oil
Eliminate wheat, sugar and veg/seed oils
Limit dairy.
If she drinks milk, - drink RAW cow or goat milk only (not pasteurized milk)
Eat lots of organic veggies
Eat grassfed meat, pastured chicken and eggs
cook with coconut oil
olive oil on salads
Sunshine
Intravenous Vitamin C, or large dose of oral C (I like New Chapter)
Magnesium ( I like Bluebonnet Chelated)

I like Chris Kresser's website. www.chriskresser.com
Hope this helps

“The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion.”
― Albert Camus

Unsaturated fats in Plant oils including olive oil ...

Unsaturated fats in Plant oils includng olive oil turn into turn into trans fats even in the bottle or when used for cooking.

No coconut oil it has no omega-3 EFAs. The ratio of Omegs 3, 6 & 9 is wrong for optimum health. This can add to the trans fat load.

http://en.wikipedia.org/wiki/Coconut_oil

I agree with the rest of the list.

Just add B12 injection or sublingual drops or tablets.

Free includes debt-free!

deacon's picture

Repeating is good

We buy whole milk from the Amish,as well as their veggies,and eggs,she eats these, but won't touch meat...like ever.She is an animal lover,and they do love her,even the wild ones
She takes organic coconut oil,but only here recently.The eating of wheat is a real problem.Seems everything she loves to eat is made from it,but it is a weaning process.
We started using olive oil about 5 years ago (learned about on this site)
Thank you very much for the comment and that link.I have been reading comments since this post came about.I started before,but now it is a priority
for me,and will help my whole family
d

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

Does she present gluten intolerance problems?

Eczema, dry skin, asthma, seasonal allergies, belly aches, appendicitis. Constipation, diarrhea that need help sometimes?

Everyone in the house hast to just stop eating wheat, rye, barley and oats for just two weeks. Cross contamination must be eliminated.

If the symptoms go away, she's found a problem.

Two weeks to find out if there is a problem. That's doable.

You'll know by Labor day if you need to bother.

Free includes debt-free!

If you want to check some of

If you want to check some of the things people have mentioned (e.g. Vitamin d, k, b12), i recommend two websites where you can order your own tests rather cheaply.

Www.privatemdlabs.com

And

Directlabs.com

Sometimes it really pays to do your own investigations, but sometimes you need a doctor to order the test for you because they arent available online (e.g. It might be hard to get the lime disease tests yourself...)

You can claim the tests you order on your insurance.

That B12 is vital

This link is more about mental health misdiagnosis and B12, but MS is another neurological issue and is well worth checking into. Also, I used to see MS patients about their eyes, and had a few tell me they were able to live again by using medical marijuana.

http://idahoaquaponics.wordpress.com/2014/05/04/is-your-diet...

Love or fear? Choose again with every breath.

My beautiful daughter is DAR and has MS

She worked her way through college selling tax-free MSAs. She is now 34 years old and of course she was trapped at her old job because she couldn't get health insurance. With ObamaCare's no medical underwriting, starting on 1/1/2014, she quit her job and now makes $100 a hour as a self-employed consultant. So ObamaCare has set her free.

She is the best salesperson I have ever met. I'm trying to make her a Rand Paul Republican but nobody can tell her what to do. She gets that from her Mother who is also DAR, of course. It's in their genes.

So this is what I told my beautiful daughter: Rand Paul wants to de-link the tax-free HSA from health insurance so everybody can go tax free. She said, "WOW, that's smart!"

What is "DAR"?

What is "DAR"? Daughters of the American Revolution?

Yes

It goes back to a Patriot named Fox. He was mustered out of service by George Washington himself. That's way I call my wife and daughter, Foxy Lady.

By the way

Until Rand Paul changes the law my daughter can't have an HSA. If anybody might be concerned about future health care expenses it would be my daughter with MS. If she could save money, non taxed, for retirement health care expenses, she would. Money that is never taxed will last longer in retirement. That's the magic of the tax-free HSA. She understands the law and that's why she said, "WOW, that's smart."

Vegetarian: Suspect B12 and cholesterol deficiencies.

Sub-lingual B-12 drops. B-12 is needed to crated nerve sheaths.

Cholesterol should be 270-400. By weight nerve sheaths are 50% cholesterol.

Swelling and edema are often the result of lack of protein.

The Dr is sufferinf from full blwon nutritional ignorance.

B-100 complex will help provide metabolism and immune system support.

Best wishes from,
Paul

Free includes debt-free!

Note

You said she turned vegetarian because of how they made meat. Well, the Paleo diet which is meat based, has been shown to be the optimal diet for MS and other autoimmune illnesses. I've done it and felt significantly better.

M a vegetarian diet is fro my view very insufficient for many people and that many, many small farmers raise their livestock with care and they are put down very humanely. She needs to realize, in the case of sheep for example, that most do not survive in the wild, they are killed often slowly by predators, by birthing issues or in the case of rams, each other! Rams do kill other rams, if one gets injured they will all turn on it with rare exception. Rams live for food, women and wine and that's it and they fight incessantly before and during breeding season.
Animals are meant for our consumption, but that brings a responsibility with it, to raise them with good care and put them down humanely.
I really hope she changes her viewpoint.
Has she been tested for Lyme?
I hope she can turn a corner very soon,.
Google paleo diet and MS
Wishing you the Best of Luck,
Betty

betty

Just read the update details.

What struck me as a big issue is a 17 year old being a vegetarian for eight years.

Fairly recent research is showing that vitamin K2 deficiency is widespread and while we can make it out of vitamin K1, we can't make enough and need to eat meat, butter, cheese, eggs, from grass fed animals.

The results of this deficiency include calcification of arteries, osteoporosis, nerve damage, Alzheimers, MS, cancer, and insulin resistance.

Also, our brains are mostly fat, and omega 3 is a major player. A vegetarian diet is likely devoid of long chain omega 3 fatty acids which we get from animals. More than one noted long term vegetarian has developed one or the other of the neurological degenerative diseases.

You also might want to consider the other known micronutrient deficiencies associated with a vegetarian diet.

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

"Wales NHS to offer MS cannabis drug Sativex"

NOTE: This is Bayer maximizing their profits producing something EVERYONE should be able to grow in their back yard.

My point of this comment is cannabis is helping people with MS. Even the people producing $5,000 per month meds, know it.

http://www.bbc.com/news/uk-wales-28810407

Also, I get to bump an old legalizeliberty post on Sativex http://www.dailypaul.com/166145/big-pharma-attempting-to-cor...

scawarren's picture

Bump for Deacon and his

Bump for Deacon and his little girl!

It is easier to fool people than to convince them that they have been fooled. – Mark Twain

+1 research cannabis

Plenty of links available online, here are just a few. Best of luck on fighting this and recovering completely!!
http://youtu.be/8Lmut2P-4Go

http://www.medicaljane.com/2014/02/17/german-study-cannabino...

http://mssociety.ca/en/research/medmmo-marijuanastudies-Nov0...

deacon's picture

Update,and more info

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 wee told to abort!!)
Born the pinkest fattest baby they had seen (told this by the dr's and nurses)

Now please bare with me,as I type like my brains operates.
She went blind in one eye last may,got that back,the other 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,And they are 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 never experienced before
as it all came on too quickly,he is at a loss,called his buddy from U of M
who wants to see her
I had been to the DP yesterday,but was not able to give a full report( i was over whelmed,hell I still am)not by just the deal with her,but with everyones outpouring and comments) It truly means a lot to me,and words fail
thank you greatly,and a real special thanks to JRD,who by the way,made this all possible for me and mine

deacon

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