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Craig and LDN
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Craig and LDN

Hi Forum Family.   Some of the members who have been on the forum for awhile may remember Craig and his attempts to get a diagnosis.  He does have brain atrophy, 20 lesions, one perpendicular to the ventricles, and four of the 20 are greater than 3mm.  He went to Cleveland Clinic, Mayo, NIH, Dr. M in Oregon  two NJ neuros and one in Philadelphia at a teaching hospital.  Although some docs at NIH admitted he has MS but not officially, he never really got a diagnosis. The Phila hospital said he has MS but there are other people who are more debilitated than him who have to get treated first.   Univ of Maryland in February or March did say "suspicious" for MS, but that is as close as he got.

So in March we came to a pivotal decision.  His spasticity in both legs was getting more and more uncomfortable and his back pain in the T12 area is pretty much constant.  He also has the feeling of walking on rocks because of spasms in his feet.  His fatigue was  bad enough to prevent him from working more than four hours a day.  Things looked pretty bleak for us far as our future was concerned  we had no idea how he was going to continue to work.

The alternative medicine M.D. offered him LDN.  She uses it in her practice.  She is familiar with the dosage, the precautions, and has a trusted compounding pharmacist.  So since no one else offered help, he said yes and started on the LDN .  

It has been about three months now.  All I can say is "Thank God for LDN!!!!!!!".   He has experienced a big increase in his quality of life.  He went from working four hours a day to eight hours a day.  He went from having to take a nap each day to getting up at 7 A.M. and not going to bed till 11 p.m. or midnight.  

Personality wise, he was getting depressed, lost his hope for the future, and was just generally mopey.  Not now.  He actually smiles, laughs, and has a much stronger tolerance for pain.

He has forgotten to take his LDN on two different occasions.  The next day he was right back to his mopey sad self, needing naps.  But when he goes back to the LDN, his mood once again improves.  So it is working for him.

Craig actually told me that with the LDN, he still has pain, but the pain doesn't feel as severe.  He still gets pain in his legs when walking and standing, but again, not as severe as when he doesn't have the LDN.  

Craig is also following other principles of alternative medicine in the treatment of MS.  He finally got his vitamin D3 level to over 50, which does make a difference.  He is on meds to greatly increase his blood level of testosterone.  And he is on several supplements.  So we believe it is a combination of all factors which is helping.  But I never again want him to forget that LDN!!!

I just wanted to share our story with LDN.  Of course it is not magic, but in our experience it has improved his quality of life and gave our whole family some hope.  It may be only temporary, but we're enjoying it while it lasts!!

Elaine
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15 Comments Post a Comment
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293157_tn?1285877039
well, I'm glad that he is getting some help...what is LDN?  not up to the short forms?

and hope all goes well for you and your family...

take care
andie
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LDN is Low Dose Naltrexone.  It works by increasing the level of endorphins in your blood.  Endorphins are "feel good" substances that elevate your mood and make you feel good.

You take LDN at bedtime and while you are sleeping, the endorphins are secreted.  You cannot take LDN if you are on pain meds, but otherwise there are no side effects and it is realtively harmless.  

If you take pain meds (narcotic ones) the LDN stops the pain meds from working.  Craig is on muscle relaxants, but no narcotics.

Elaine
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335728_tn?1331418012
I know the sort of HE** that your husband and you and the whole family for that matter has been through and in following  your story I have to say that I am so incredibly happy for you all!  Craig has basically dealt with the same sort of doctors that I am dealing with and I am so happy that you have finally found someone that has allowed Craig to continue with his life!  I hope that he continues to reap benefits from the LDN but he isn't on any dmd's is he?  I don't imagine that the LDN has the same results as the dmd's in slowing the disease process but if this is giving him a quality of life I say go for it!  I wish you and Craig and your children a happy and enjoyable future because of the LDN and I hope that eventually Craig's dr.'s will come to their senses and diagnose him properly so that he can get on the dmd's.  Best of luck to all of you!

Lots of Hugs,

Rena
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222135_tn?1236491821
Thank God there is finally something helping him! You've all been through far more than anyone should have to endure and still no answers. I thought about all of you so much yesterday on Fathers Day and hoped that your family was able to have a nice one.

All I can say is HURRAY!

Penn
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297366_tn?1215816651
I know many people from another forum that do not take any DMDs and instead only rely on alternative processes--one of which is LDN. Many people have had great success in reducing their number and severity of relapses with it. However, it isn't always easy to locate doctors who will prescribe it since its use for MS is "off-label".

However, it sounds like it was very worthwhile for your family's situation. I say, "Bravo" to you and am so glad that Craig is feeling better!!!!!
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393986_tn?1303829575
I am so happy to hear Craig is feeling a lot better with the LDN.  This is good news and I am so relieved that he is finally getting some relief.  This news has really brightened my day, thank you so much Elaine for sharing this with us.  I know what a trying time this has been for you two.

Love Ya,

Ada
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It is so good to hear that something is working for Craig and that he is getting back some of what he has lost for so long!!!!  Thank you for sharing this good news!!!  Just getting some relief has to feel remarkable.

Best wishes for this to continue!!  

Wanna
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198419_tn?1360245956
Hi Elaine,

Glad this med is making Craig feel well and enabling him to have a well deserving quality of life.

So very important for him and your whole family.

While I wish someone would have the you-know-whats to put a name to what Craig has, I'm glad this mixture is working for him.

Tell him we're thinking of him.
-SL

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Elaine

Wow,  he got a med. without a dx ,and it is working for him . What a relief to have some let up in sx.s and he sounds like he's doing well on it .  

If he were dx.d would he continue to take LDN or would he choose one of the DMD's ?
I'm very curious as I am very close to my dx. day and this sounds interesting , to say the least.

Does anyone know if LDN can be taken with Copaxone ?  I know there is conversation that it can not be taken with interferon....

I read some of previous posts and will look at more today ..  Thanks Elaine for bringing the topic up again.  

Thanks Andie for asking what LDN stood for.  I have seen post about LDN ( for months )  and thought you all were talking about something completely different     ....  :) :)       : - (

Take care

Jo
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I'm so glad you decided to post this, Elaine, and even more glad that LDN has been doing Craig so much good. God knows he deserves it.

As you are well aware, there are fanatics out there who consider LDN the answer to everything and clamor for its use to solve all the world's problems. You've been so careful to note that LDN is a quality of life drug and not a cure. Your doctor is taking great care with it for Craig, so I have lots of confidence in this whole situation.

I'm hoping that very soon one way or another, Craig will be prescribed some DMD. Also hoping the LDN can be taken with it.

When is Craig's next neuro appointment?

ess
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I am glad to hear that you have found something to help Craig.  I always keep up with your posts and have prayed for something good to come along.

Your family has been thru so much, I am sure with Craig feeling better it has picked everyones spirits up.  This is such great news.

Take care and enjoy each day and maybe soon Craig will get someone to step up with a definite dx.

Hugs
doni
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279234_tn?1363108849
I'm so happy for you and Craig. I'm glad you guys have found something that works for him. The one thing I've never understood is WHY Craig has no DX. I have read many of your post and can't believe how much you guys have been through. Sounds like the doctors you guys have dealt with are idiots, if I may blatenly say it.

I would enjoy every minute and I hope that the LDN help him for a long time. It's a wonder that you haven't lost complete faith in the medical field. I know I would if I had been through what you guys have been through, especially with all the evidence that Craig has.

Wishing you the best of luck!
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405614_tn?1329147714
I'm so glad that you decided to go for alternative medicine and that it's working!  When I read your post and how much better Craig is doing on the LDN, I started singing songs of praise and thanks that I learned when I regularly went to church as a younger person.  I haven't been to church much lately, and don't know how I remembered the words, but they just needed to come out.

I am so thankful that you have finally found something that helps Craig so much; how wonderful for you all!  

Now, if he could just get a diagnosis...

Ah, heck, just improving quality of life at this point is such a major step in the right direction!  Joyful, joyful, we are joyful!!!!

affectionately,

Kathy
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338489_tn?1215561709
Thank you for your willingness to reveal that you and Craig with the help and guidance of an alternative therapy doctor are taking charge of his disease.  It doesn't have to have a name because no one else has offered him a  diagnosis ,a management tool or a cure.  So, what does that leave but the decision in your hands to continue to suffer on end or make a decision to try a drug and other supplements that have good anecdotal evidence of results?  

I applaud your courage and I know the amount of time and effort you have put into research and traditional medicine.  Alternative therapies are not voodoo and the docs who prescribe them are  often intelligent, conscientious and well-trained. And,they have patients on LDN and supplements who are improving the quality of their life! Like anything else, you have to make sure that you do the right kind of research and background checks, as you certainly have..  Not all doctors are created equal as we have read on the forum.

My son who is DX and probably has PPMS, has gone on LDN also.  There is NOTHING for PPMS, ( He was on Rebif,  when they thought he had "benign MS" and has now gone off it)  So ,rather than wait for a new med or hope that he doesn't become incapacitated in the meantime, he  goes to an M.D. who uses alternative therapies and was all for the LDN.   He also goes to U of MI MS clinic which has NOTHING TO OFFER HIM! medically, although they continue to monitor him.  Skip's Pharmacy was tremendously helpful in explaining and formulating the LDN.  He also worked with the doctor who has taken over for Dr. Bihari, and talked to the author of "Up The Creek With A Paddle".

He is on the 1.5 starting dose and will progress according to the levels set by his doctor until he gets to the recommended full dosage.  So far, he has noticed a positive change in his mental state, but no change in spasticity.  It is the only hope that he has, and in his own words "I'll do anything to get better!".  No side effects, either, including no sleep changes.

So, good luck to Craig and Elaine, and please, continue to update the forum on what is happening as I will.
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359574_tn?1328364024
Fabulous news.  Thank you for the report.
Holly
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