I am going to take LDN!

Linda in BC · Post by **Linda in BC** » Mon Apr 26, 2010 6:34 pm

I went to the doc today and asked to be given a prescription for Low Dose Naltrexone. I had printed off a bunch of relevant info on it, which is a good thing because he was not aware of it nor the research that has been done into it's effects on auto-immune disorders. He was pretty good about it, but cautious, understandably. He says he has had one other person ask for it before. Because I have Hypothyroidism and am on Eltroxin for this, and because there was a caution about LDN throwing your need for thyroid meds out of whack and a person suddenly needing far less and becoming hyper-thyroid quickly from too much medication now, he wrote the rx for only for 1.5 mg/night (this was recommended instead of the normal 4.5mg dosage) and only for 4 weeks as a trial. I go back to him in two weeks.

On the Low dose Naltrexone.org website there was a list of pharmacies that make up low dose prescriptions ( the low dose has not been FDA approved yet although high dose (50mg) was approved in1994 for another condition), so no manufacturer makes them yet. Luckily there was a pharmacy in Toronto Ontario that does make them and I called and they were very nice, and it is on its way to me. I faxed them my prescription, gave them my visa and she said she actually had some 1.5 mg ones made up so could send right way.

I have a few other autoimmune issues going on and because this affects the body's total autoimmune response, I am hoping it is the ticket for not just the MC but other things as well. I am going to find this very interesting. I am extremely sensitive to any medication and suspect that the 1.5 dosage will be enough for me to see some improvement ( and hopefully low enough that I don't hyper-bolate out of galaxy!

.

I also asked to be tested for vitamin deficiencies ( D, b12, iron) and a bone density for Osteo. I know I am really run down and want to take control of at least that aspect of my health before irreparable damage is done. I suspect I have reached that point in my disease progression ( after 11 years...) that Dr. fine talks about when enough damage has been done that there are now malabsorption issues.

Anyhow I will keep you posted. Thanks for listening. It is just so amazing, wonderful and comforting to have someone to tell this stuff to! If I had not found this site:
1) Well, I guess I probably would have never gone on LDN in the first place but 2) whom would I have told if by some miracle I had! (who would have a clue what I was talking about!)

Linda

barbaranoela · Post by **barbaranoela** » Mon Apr 26, 2010 6:46 pm

great news Linda----am one of the OLDBEES here---it is wonderful to read so many of the successful ways that all U peeps have gone thru to get on that wellness road--

continued good luck to U~~~~

Barbara

Post by **tex** » Mon Apr 26, 2010 7:15 pm

Linda,

Great!

I wish you the best of luck with this treatment, and please keep us updated on how it goes.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Mon Apr 26, 2010 7:24 pm

we all love hearing about each others 'wins' and achievements. they are most definately worthy of celebration

what is fantastic is that you have got a really good pro-active self management approach

which definately a winning formula

my theory is that some days are diamonds and some days are stones
you have had a really fantastic diamond day!

MaggieRedwings · Post by **MaggieRedwings** » Tue Apr 27, 2010 5:08 am

Morning Linda,

I am very anxious to hear how this works for you and I missed welcoming you to the board. It is a huge melting pot we have of information and trials that people here have done. Helps sort things out for some of us that have been here since the beginning.

Good luck to you.

Maggie

Linda in BC · Post by **Linda in BC** » Tue Apr 27, 2010 8:55 am

Thanks, Maggie, Gabes, Tex and Barbara for your support and well wishes. My background is in Psychology (I have a BA in it) and I have always been fascinated by the brain, neurotransmitters, (especially dopamine) and how it all works , so this treatment is right up my alley.

BTW What are the little penguins everyone is sporting all about? ...and I can't seem to find the search function for within the site that you talked about, Gabes. I know I have seen it at times but where does it hide?

Regards,
Linda

Post by **tex** » Tue Apr 27, 2010 9:16 am

Linda,

The penguins are simply a crude indication of the number of posts that members have written. As you pass certain thresholds, (of your post count), the system will change the penguins that represent your posting "category". You're getting close to the number at which your penguins will begin to show up.

The "Search" function is included in a large group of links that allow access to various board options, near the top of every page, (below the title description, where it says, "Discussion and Support Forum For Collagenous Colitis, . . .", etc.), and to the right of the Potty People logo. The "Search" link is the third one from the left end, on the top row.

Tex

Linda in BC · Post by **Linda in BC** » Tue Apr 27, 2010 10:14 am

Thanks , Tex. I guess I better

Linda

Post by **tex** » Tue Apr 27, 2010 11:54 am

Don't feel like the Lone Ranger - there are so many bells and whistles on this board that a lot of members have trouble finding the basic options, because of all the extra "stuff" that clutters every nook and cranny. LOL.

Tex

Stanz · Post by **Stanz** » Tue Apr 27, 2010 1:21 pm

Linda,

I'm so glad that you are going to be trying this. You might also consider taking L-Glutamine at the same time, if you don't have immediate results. Very curious to hear how this goes for you.

Connie

adelie · Post by **adelie** » Tue Apr 27, 2010 1:28 pm

Hi Linda,

Wishing you the best with LDN. I'll be watching your posts to see how things are going. At recent doctor visits, my doctors have mentioned that it's probably time to start looking into some other treatment options as the current treatment isn't as effective as it once was. I have multiple conditions and with the targeted therapies, treating one seems to irritate another. It sounds like LDN may have broad ranging benefits which has definitely peaked my interest. Thanks so much for sharing.

Best,
Karen

Linda in BC · Post by **Linda in BC** » Tue Apr 27, 2010 2:21 pm

You might also consider taking L-Glutamine at the same time, if you don't have immediate results.

Connie: Yes, I was reading up on L-glutamine, and actually looked for some at the pharmacy yesterday (didn't find it) . I'll take into consideration your suggestion but as Tex has said somewhere on here before, one treatment at a time might be the wisest so as not to confound results, so I think I will give the LDN a good lone trial run first.

I did order some Boswellia the other day, before I went to the Dr., and it should be here soon, however I think I will also hold off on taking it for a while.

Karen:

I have multiple conditions and with the targeted therapies, treating one seems to irritate another

Yes, exactly! What really appeals to me about the LDN treatment is, if it works as it is reputed to, it should be addressing the root cause of many of my conditions. I have always liked to be efficient so why not go straight to the heart of the matter instead of treating each individual ailment!

Linda

Stanz · Post by **Stanz** » Tue Apr 27, 2010 2:56 pm

Linda,

Unless I am mistaken, you will be the first in this family to try LDN, and from my research it has been a good choice for treatment for those who have used it, I would have used it in a heartbeat, but the Glutamine stopped all my symptoms w/in 3 wks., so I didn't need it.

I don't have one of the main C genes, as you do, so I'm thinking this should be a good test of an alternative med. Please let me know how this works for you and if you ever do want/need more information about L-Glutamine, I'm your girl. It has been nothing less than miraculous for me, but I would agree that it's best to start with only one of those.

According to my ND, they are not contraindicated. Glutamine is an amino acid that our bodies produce naturally, I buy it from my ND's office, but I could order it online.

Onward and upward!

Connie

Post by **tex** » Tue Apr 27, 2010 3:28 pm

Actually, (as I believe I mentioned in another thread), at least one other member has used LDN. She started taking it because she was diagnosed with MS in 2007, (she's had MC since 1999). You can read her story here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8751

About a year ago, after another member asked about trying LDN, I checked with her to see if it was still working for her, and unfortunately, it was not. In fact, her MC symptoms were so bad that she couldn't even be sure that the LDN was helping her MS. That was very disappointing news, to say the least, especially in view of her multiple autoimmune issues. It's certainly possible that her temporary remission from MC was simply due to a spontaneous remission episode, which is always possible with any IBD. IBDs tend to wax and wane, over time.

Remember, though, that we are all different, so please don't let this cast a shadow on future trials, because attitude does matter, where health issues are concerned, and a positive attitude definitely improves the odds of a successful outcome.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Tue Apr 27, 2010 3:31 pm

i dont want to burst any balloons, mindful there are no cures, each individual has to find the formula (meds/diet/natural etc) that gives them the best quality of life......

(think....episode of the amazing race where we are stuck in a maze, trying to decode the clue)