Alternative Help?

Yeah you’re right. If there were any miraculous treatment that we knew about we would have tried it for either outselves or our loved oned. That’s not to say not to pray for a miracle.

Just be aware that miracle sometimes don’t happen. Sometimes it’s not in God’s plan. I’m sorry to sound negative. I’m just trying to be realistic.

I suggest that you be there for your loved one and hold his/ her hand. If it’s you who needs the cure, find someone to hold your hand. If you don’t have anyone else to hold your hand, God will. Just ask him.

IF there were a ‘bullett?’ Would we still be here?
It’s what goes on in our bodies…the chemistry, genetic, whatever changes that have GOT us to where we are…
Now Lots can be said pro and con about Vitamins Minerals and medications..They all have their place. Just learn what those places are and how they [and you using them] can help or hinder your progress [if any].
To ME….how you set your mind—-downers or uppers in mind-set are key to getting better…BUT always tempered with wide reading from here and elsewhere to learn what’s happend to others and what to expect..
I for one would NOT accept any doc statement saying ‘We can’t do anymore’…unless he could back it up with facts [or facts that I could find or not] This is a time when ‘QUESTION AUTHORITY’ might be useful…but…YOU have to do the homework… My own homework got me the tests and diagnosis in almost record times, and then the treatments…YOU know something is wrong…don’t quit until you know what IS GOING ON!

Keep faith and hope…then cling on for life! Hope and hugs from here?

I myself have been a on a very strict diet for the past two months and I have to say, I feel more energized at the end of the day. (I was diagnosed with GBS on May 5th of this year.)

Alimarie,

When you say you are on a strict diet, what does that actually mean? What are you eating?

Lori

Hi Jenn,

I am very cautiously responding to you – but first please understand I am a caregiver to a daughter

w/cidp. I have no medical background. I have spent the past two years studying the

micro-enviroment of cidp – not gbs. There are important differences. Having said that, I will

share my experiences of some alternative products that my daughter and I believe contribute to her

progress. It is my hope that someone out there with a background in the field will give me feedback

– positive or negative – doesn’t hurt my feelings – if I am on the right path – or just wishful

thinking.

I will start by attempting to explain the science behind my decision to turn to alternatives. I

don’t claim to have found a magic bullet, but there is no way I can explain without getting into the

technical details – so bear with me – and feel free to investigate for yourself and challenge my

theories. Here goes (in my limited capacity):

T-cells are the first line defense against pathogens. Past theories of autoimmunity concentrated on

dysregulation of Th-1 and Th-2 mediated responses of the immune system. Newer research has

uncovered another type of t-cell that helps to understand the pathways of cell signaling that occurs

in response to different types of antigens/pathogens. Briefly, here are the major players:

Th-1 cells – believed to respond to intracellular pathogens; associated with acute (rapid) response

Th-2 cells – believed to respond to parasitic type infections; associated with slowly

progressive/chronic/ or allergic response

Th-17 cells – lineage evolved to cope with a range of extracellular bacterial pathogens; this type

of t-cell is the newly discovered effector cell linking developement of self-antigen reactivity to

disease pathogenesis. Key player in autoimmune inflammation.

This is a journal article that fully explains how this is thought to occur:

[url]http://peir.path.uab.edu/pathgrad/publications/weaver_CD4.pdf[/url]

At the same time that I was trying to get a grip on the complexities of immune responses, I found

many alternatives making various claims – most were easy to discredit. Some were worth

investigating. One in particular caught my attention: it was a natural product produced by a

pharmaceutical company as a compliment to chemo and/or radiation in the treatment of cancer. It

claims, among other things, to INCREASE the levels of Th-1 cytokines (chemicals produced by Th-1

cells). My first reaction was to stay far, far away from this. Upon closer inspection (of the

above mentioned journal article and substantiated through other sources), I concluded:

1. Th-17 contributes to self-antigen reactivity
2. Upregulation of Th-1 has an inhibiting effect upon the production of Th-17 cells

I spent about 3 months tossing this concept around. Finally, I felt my hand was forced by the lack

of my daughter’s response to treatment, and a surrender by her doctors. At the time it seemed she

might spend the rest of her life in a wheelchair. After many talks and tears, she and I, together,

informed her doctor we would try this approach and if nothing else, document our results. (And then

do chemo)

I had read the toxicology reports. I had read the patent. I investigated the FDA’s regulations in

regard to the sale of the product. I followed a few blogs of cancer patients using the product. I

even went so far as to take the supplement myself for a week before giving it to my daughter. I

found no serious long term side effects. In the USA, it is sold as a nutritional supplement,

therefore no claims of medical benefits can be made by the U.S. company distributing the supplement.

To be honest, I had low expectations that this product would help. We were pleasantly surprised.

After about a month, we *thought* she was gaining strength – but remained guarded. By 6 weeks, we

began to feel confident that some positive response was occuring. To get to the point, after nearly

6 months, my daughter began walking and building up her strength. It has been more than 10 months

since she began, and now is independant, mobile, and (hooray!) has returned to college part-time.

My heart sings for joy every day! We have no illusions – she is not “cured” – still has intention

tremors, sometimes unsteady, and despite having more endurance, she still requires 10 hours of

sleep. Still, it is more than we ever expected. I would be so pleased if our experience helps to

bring about something useful – as far as I know – no one with cidp has tried this – and the

manufacturer makes no claim of benefit for cidp (although there is a published article indicating

“amelioration of Lupus”).

Here is a link to the research (or use pubmed):

[url]http://www.avemar.com/avemar_references_list.php[/url]

Jenn,

The purpose of this long and involved post is a demonstration that it is possible for CAMs to make a

contribution. I am not suggesting to take an alternative on my say-so or anyone else’s, but to

research the possiblities. I send you my very best wishes for your mother’s recovery.

cd

Currently, I am in the process of reviewing several others, but will wait to make further comments on them.

cd,

I think everytime you post something I continue to be amazed at your fantastic wealth of knowledge. I know its taken you a long long time, and a great deal of effort to amass. I would really like to thank you for sharing this knowledge with us as we all benefit greatly from it. Thank You! 🙂

Hey, first off I’ll start by saying we are not 100% sure I had/have GBS but dr.s treated it as such. Mine began in March (07) after a severe case of food poisoning.
Okay, I’ll say around 5 “traditional” doctors, aside from my original neurologist, thought it was all psychological! HA! A psychiatrist and a psychologist pretty much ruled that out.

Once I was told me it was psychological, I decided to take matters into my own hands – regular dr.s were not helping. I’d leave the hospital & dr.s offices unable to walk, talk, hold my head up or use my arms& told to see a shrink!

I found to alternative medicine dr.s and have had great success. No, this is probably not the case with everyone. We have discovered through the elimination diet, dairy, pork, beef, corn and eggs all flare up my neurological symptoms (possibly GBS). I am also on a strict diet. THere is actually a blood test to find out what you are allergic too. No, I had no food issues prior to my condition onset. I haven’t been able to conquer the fatigue and tingling sensations I have though. I have difficulties walking daily, but not as severe.. Oh well, at least I’m functioning!

Yes, be very open minded and see a naturopath. They don’t light incense and do voodoo!!!! Unfortunately, my insurance doesn’t cover alternative medicine…hmmm..I’m not surprised! I do correspond with my naturopath via phone and emails..free of charge 🙂 I was very disappointed in the traditional dr.s I’ve seen, so I’d rather pay her anyway!

We are still in the “process” of blood work and tests to figure out what else I can/can’t eat…environmental issues, vitamin deficiencies, hormones, etc…We even eliminated the prescription drugs I was taking..yipppeee.

I don’t know where I’d be if I hadn’t found my naturopath!!! In a mental hospital??? HA!!! I definately wouldn’t be able walk to my computer, sit here, holding my head up and able to type this post!

Take care, and let us know what you do!!!

Oh, another thing we found early on- this was our “sign” it was psychological – was raw garlic! I ate that stuff like you wouldn’t believe and it helped!
I’m not as crazy about the garlic anymore, but still eat it 🙂
Becca