A question on Herbal remedies??

[tonyad]

Hi Friends,

Well, since my dx I am still thinking and thinking, and still going through the stages of excepting this dx.
Although I have decided to go with Copaxone, I was just wondering...............Does anyone here on this forum
treat WITHOUT (CRABS) Did I write that the right way? Is that the acronym for the meds or should I use DMD's?
Just trying to get the right lingo going here..:)  ha ha

Anyhow, what I mean is. Does anyone treat with nothing but herbs, eating healthy, excercis, meditation?
And if you do use herbs what kind? What do you do?

As always, Thanks in advance friends for your info and sharing your personal
thoughts and ideas with me.

Take Care,
~Tonya

[tonyad]

Thanks Qix  :)
Appreciate it much.

~Tonya

[Quixotic1]

None of those are narcotic meds.  But don't take my word.  Tell the prescribing doctor EVERYTHING, including supplements, that you take.

Quix

[tonyad]

Now when you say narcotic meds...what would that include?
Well.....Herer is what I take:

Baclofen
gabapentin
klonopin
amantadine (sometimes)
alprazolam (sometimes)
RX strenghth antacid

Does any of that have any contraindications for the LDN?
And Thanks so much for that info.

~Tonya

[jensequitur]

The best advice I can give you is to take your Copaxone religiously, and eat lots of raw fruits and vegetables.  And fish.  And nuts.

[HVAC]

Before the Neurologists would treat my MS I did Chinese medicine and acupuncture and it made me feel worse.  Other people it does not.

I had a whole regiment of supplements because I also have chronic mononucleosis. The MS Specialist told me to get off all of them but Vitamin D.

I do follow an anti inflammatory diet and exercise. I use hypnosis for pain, anxiety, and sleep. I also have a friend who does Reiki on me.

I use Copaxone and medications for my Bipolar.

Alex

[Khiba]

Quix is SO right about not using LDN with any narcotic containing medications!!! That includes the pseudo one, Tramadol/Ultram. It also acts on the opioid receptors and with LDN will make you sick.

LDN has made some folks feel better though and since the side effects are minimal, it might be worth a try if you don't do a DMD except copaxone and are not on narcotic pain relievers.

It can be dose adjusted from 1.5 mg night to 4.5mg for effectiveness and side effects. I started on 1.5 mg for a  month then went to 3.0 mg. I did have vivid dreams for about a week when I started but that was all until I went to 3.0 mg and found I got more stiffness so I backed off.

If you try it, do your homework. Google it and read all you can, positive and negative!

Jessica

[Quixotic1]

There is no evidence that LDN can change the course of MS.  It is documented to improve the quality of life in some users, but it is not equal to the DMDs in documented effectiveness.  There have three small clinical trials using LDN in MS.  None of these showed a significant improvement with major symptoms of MS.  Much more research is needed, but the funding has been lacking.

The common lore says you CAN use LDN with Copaxone.

In the UK there is a trust set up to collect money for use and study of LDN in the UK.  Here is one of there papers from this October.  I recommend that you read it.

http://www.mstrust.org.uk/downloads/ldn.pdf

In all studies LDN appears to be very safe and well-tolerated, but some people actually felt worse on it.  Here in the forum we have had several people try it.  Some felt better, but continued to deteriorate, some felt no difference at all, and some felt worse.  Of course, this kind of reporting is not scientific at all and is no reason to avoid the drug.  Even if the drug did not change the course of the disease, but allowed you to feel better, it would be a great boon!

Be sure you are off ALL narcotic meds before starting LDN.  One of our members was placed on LDN by a naturopathic doctor who failed to check her meds which included high-dose narcotics (just stupid!).  Carol (grannyhotwheels) ended up in the ICU with horrendous pain, and high blood pressure from the pain.  She had a stoke.  Just be aware that the warning against using narcotics (even codeine or Vicodin) is absolute.

Quix

[tonyad]

Thanks to all of you for your responses.
I have learned quite a bit and got good information.

As for the LDN, that is one of the things I was trying to remember the name of because
I have heard of it before I was dx and thought it might be a good idea and maybe safer to use than the CRABS?   I'm just thinking out loud........

Of course I would not use the LDN with the Copaxone!  

~Tonya

[Mand125]

Thanks for that Jessica, it is worth knowing, I am on Betaseron and I thought that LDN was completely ruled out for me if I was taking a DMD but if ever I decided that I wanted to give it a try I'm sure that there wouldn't be a problem for me to switch to Copaxone.

Mand

[Khiba]

Hi Mand,

You can take LDN with Copaxone but not supposed to with the interferons, like Avonex, Rebif or Betaserone.

Jessica

[Mand125]

Wow I knew not to take anything that would enhance the immune system but simply hadn't thought of Vit C like that, thanks Quix for the info.

tonyad - I see LDN mentioned above, I could be wrong but I have a feeling that you can't take that along with the CRABS. I don't know for sure though.

Mand

[Guitar_grrrl]

I tried a Chinese herbal combo for my spasms, and it didn't do a thing for me.  Basically, I take a multi vitiamin, L-Lysine for my herpes, as an antiviral (works better than Acyclovir for me, for some reason...), and until I just read Quix's post here, some extra Vit. C.  I'm quitting that!

I'm all for complimentary medicine, but there's totally a place for allopathic medicine as well.  Personally, I think they all oughta be integrated.

Cheers,
Guitar_grrrl

[Quixotic1]

Becareful of the supplements that support or enhance the immune system like
Vitamin C.  Our immune systems are not suppressed and do not need enhancing.  My neuro spoke to me of problems where the wrong supplements appeared to be causing increased relapses.

I can see the Vit C for a cancer survivor, tho.

Alpha Lipoic Acid is used in Europe at the higher doses for neuropathy, specifically Trigeminal Neuralgia.  

I have been impressed with the embracing of complementery and alternative medicine by the Rocky Mountain MS Center.  Here is a link.  It costs to join ($20), but I have found it useful.

http://www.ms-cam.org/index.php3

Quix

[Wobbly]

hi, I was thinking of looking into some kind of Herbal help...but can you take that with taking Gabapentin and Amantadine ...??  or do you have to stop all meds

I take Iron, folic Acid, Vit D... multi vit for over 50s... and other Rx meds..

so I don't know if I can take more of a Herbal Med with all this I'm taking?

guess I could ask the MS specialist??

take care
wobbly

[Khiba]

Oh I forgot to add something...

LDN, low dose naltrexone. Its a drug, originally used full strength for heroin abuse,but used at lose doses at bedtime, from 1.5-4.5 mg, it helps some people with endorphin production, which makes you feel good and has anecdotally helped some symptoms of MS and helps prevent recurrence of cancer, etc. It's inexpensive and does no harm. No real side effects. However, most of the evidence is anecdotal and there have only been small studies done.

The drug is cheap, old and no pharmaceutical company wants to bother with it in clinical trials as there is no profit in it. But it might be worth a try. One gets it compounded by a specialty pharmacy. There is a good pharmacy in Florida for this. They have been compounding LDN for years and ship all over.

[Khiba]

Hi Tonya,

I will add what I use for alternative MS help. I had a bad reaction to Copaxone and since I have had breast cancer, my neurologist felt the interferon based drugs were out so now I get monthly IVIG infusions.

However, the following supplements are helpful for me
Vitamin C - 3000 mg day in divided doses
Vitamin D - 6000 ius day (D is usually low in MS folks)
Complete B complex
Methylcobolamin (B12) 1000 mg day sublingual
Digestive enzymes
Probiotics
L-Tryptophan 1000 mg before bed with fruit juice (builds seratonin, instead of antidepressant) helps with pain and sleep problems
L-Tyrosine 1000 mg first thing in morning (good for mood, energy and dopamine production)
EPA-DHA omega 3 fatty acid gels. Anti inflammatory 2 gels twice a day
l-Glutamine 500 mg twice a day on empty stomach (good for gut integrity and anxiety)
Magnesium citrate 600 mg day
Although I don't take it, I understand Alpha Lipoic Acid (ALA) can be very helpful

As for herbs, well... I take milk thistle to keep my liver moving. :)

I try to do as much exercise as I can each day either stretching, walking with my walking poles, pilates or tai chi.

Meditation helps: I have several guided meditation routines on my iPod and listen to at least one of them once or twice a day.

Journaling; writing down whats going on with my life so I don't whine and moan to my family over and over.

Diet:
As I am underweight, I try hard to eat 4-6 times a day, with organic fruits, veggies and meat. I sort of follow the Paleo diet but add in more carbs since I need the calories!
Things to avoid, or so I understand... Sugar, Wheat (gluten) Dairy, Legumes. I do eat yogurt daily with ground flaxseed and a fiber supplement for gut mobility, and i do eat green beans and peas even though they are legumes. I do eat the occasional sandwich with whole wheat bread. I use only olive oil for non cooked food and coconut oil for stir frying and other high heat cooking. I make a  smoothie with fresh cranberries each day to head off any bladder issues. I hate antibiotics and UTI's are common with MS folks.

I hope that helps some.
Jessica

[tonyad]

Bumping this.....
Come on guys or girls...I need your input  :)
As Lulu mentioned there are some who are going the herbal route or just not using any of the CRABS or herbals.
And perhaps there are some who used to go that route and no longer do.

Thanks,
~Tonya

[NiCeeGlover]

THANKS.... THIS WAS CUTE")  I JUST LEARNED SOMETHING NEW AGAIN TODAY! LOL                 NiCe

[Lulu54]

Hi Tonya,
I don't do the herbal route but there are several people here who do - I hope they will jump in.

Yes, you got that right.  CRABs stands for the first letter of each of the approved dmd's - Copaxone, Rebif, Avonex, Betaseron.  They all get lumped together because they all do pretty much the same thing.    My neuro refers to them as the Pepsi-Coke challenge.  they are the same but the choice depends on your personal preferences.

We can handle any lingo you want to throw our way - if we cant figure it out, we will always ask.

be well,
Lulu