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Old 10-13-2009, 09:00 PM #411
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Okay here, esp. since I started taking Amantadine for fatigue. I feel like living again!
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Old 10-14-2009, 12:53 AM #412
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Pl,
I am sorry to hear that you are not feeling well. I am in a relapse too. I called Skip and asked him about the LDN. He said it is not a cure, people still can relapse on the drug, but maybe not so badly.

He said to up the dosage to 4.5 mg, if the Neuro would agree. I upped the dosage and I feel like I am getting over the relapse in record time too, like Kelly said.

Pl, also I don't think you are on LDN long enough to get a positive all over response yet. Only since August?

I even had Vertigo which was sort of new for me. I had in the past some double vision and dizziness but the spin and nauseous feeling is icky. Since I upped the dosage my spasticity is all gone too. I thought if I upped it, I might get more spasms. Weird, but good.

I had an MRI of my Brain, first since 2-2007, and no changes and no enhancement. Stable MRI. This relapse brought left sided numbness and the MS Hug worse, but my balance and gait were not effected. So I doubt steroids are needed. Vertigo is leaving after 3 weeks.

I have the MRI films and report but waiting for the Neuro to call and say the LDN has stabilized me. Also my blood work was normal.

Kelly, my Endo doctor called yesterday and upped the Thyroid med to double on the weekends only. I forgot to ask for generic, yours is cheaper than mine. i start this weekend, blood work showed still hypothyroid. I even called her to see if Vertigo was from the drug, she said no way.

So this is the first relapse ever, with new and old symptoms that seems to be going away early (knocking on wood). And my spasticity is gone since upping the LDN to 4.5 mg.. Who-Hoo

I had a good clinical exam by the Neuro, even though numb on the left side, face, head and vertigo, and a few other old issues. All seems to be getting better on the 4.5 LDN and 'REST".

PL, stress and moving are the worst. I relapsed so bad when those happened to me. Get more testing if you think you need it. I was bitten by about 10 or more ticks in the last few years. I had the bull's eye a three times, but show negative. I had Doxycyline a few times. Bugs love me. I am a bug magnet.

If bees could cure MS I would be cured. I have been bitten constantly by all kinds. Step out the front or back door and a spider or something gets me everyday. Being blonde I think I look like a sunflower or a yellow rose or mum.

Rest is the key, PL, even with LDN. We tend to feel better with energy and overdue it, or expect too much from the drug.

Trust me, the DMD's have never helped me like the LDN has. Maybe there are other drugs out there that might help other people, and more coming out of the pipeline, but for now this is still my drug of choice. JMO

to all of you.
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Old 10-14-2009, 11:03 AM #413
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I've been doing great! About a year and a half ago, I started having trouble with my right eye. Went to the optometrist and he said I had dry eye. (just one??) It didn't get any worse and I just lived with it. I started LDN in the middle of June and I've recently realized that my eye hasn't bothered me for a while now. Not sure if I should give LDN credit, but after all this time the only thing that changed was taking LDN....

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Old 10-14-2009, 11:42 AM #414
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That's wonderful, Carol!

I suffered through the DMD's at first....like most everyone does.....with no benefits and only painful and aggravating side effects and site reactions.

I wish everyone who's struggling with their DMD would just give LDN a try. I was skeptical at first, too, but now you couldn't PAY me to go back to an injectible. Especially when I saw no improvement and felt worse than I did before I even knew I had MS.

Most neuro's (mine included) are protecting themselves from liability due to the fact that LDN isn't an approved MS treatment by the FDA. I could care less.....it works for me and that's all I'm going by. I often wonder if it's more $$ driven than anything.
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Old 10-14-2009, 06:58 PM #415
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thanks, all!

Hopefully this won't be as bad as the other relapses... I figure my disease is somewhat aggressive compared to average. They say the average annual relapse rate is like 1.2 or something right? And here I am coming up on number four in 10 months! With two of them bouts of transverse myelitis to boot!

I'm not willing to brave MS without LDN though. I trust the years of experience of Dr. Bihari and others whose patients disease progression basically stopped. I'm already at 4.5, I wonder if I need to bump it up a teeny bit till this is over?
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Old 10-14-2009, 07:47 PM #416
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Quote:
Originally Posted by poetic license View Post
I'm already at 4.5, I wonder if I need to bump it up a teeny bit till this is over?
In the case of LDN (low dose naltrexone), more is not better, so no, stay with your 4.5mg or reduce it to 3mg, for awhile.
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Old 10-17-2009, 12:21 PM #417
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Just received my new script of LDN from skips, along with a free bag of their Halloween candy..
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Last edited by SallyC; 10-17-2009 at 01:42 PM.
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Old 10-17-2009, 02:22 PM #418
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Quote:
Originally Posted by SallyC View Post
Just received my new script of LDN from skips, along with a free bag of their Halloween candy..
I got one last year, too! Hey, I'm going to need a refill in the next month.....may as well go ahead and get it now and take advantage of the goodie bag!

I'm still taking the 4.5 dose! Yea!
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Old 10-18-2009, 05:22 PM #419
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I am only on LDN 3mg. for 2 months, but have noticed the change
in symptoms for the better.

The fatigue is so much better and it has also helped with the pain for
the fibro. I got off the Tramadol, only now take neurontin twice a day.

I am now fighting the change of weather flu like symptoms. I have COPD
also and the weather change always affects me this time of year and get
a bad case of Bronchitis. So far ms symtoms have not worsen, which they\
usually do when this happens to me.

Keeping fingers crossed that everything stays stable.



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Old 10-18-2009, 05:45 PM #420
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That's great, Jappy! Looking back I've noticed major improvements since taking LDN. It was so gradual that I didn't notice them all right away but looking back I can see how much I've improved. I've been on it now for a year. I hope it's always available to me......not sure what I'd do without it!
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