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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Started LDN 2 weeks ago


 
05-21-2010, 01:35 PM   #1
Beans
New Member
 
Join Date: Mar 2010
Started LDN 2 weeks ago

Hi all,

I haven't written in a couple months, since I posted my introduction.

I finished prednisone two months ago and was waiting to see my Dr. about a long term treatment.

Two days after stopping the pred I started having joint pain. Two weeks later started having intermittent tummy pain and gas. Am now finding some foods disturb me a bit.

Saw the doc two weeks ago and asked if he would put me on LDN and he agreed. He has never prescribed to a patient before but was willing to try it on me.

So, I've been on 4.5mg for two weeks. Four days after I started taking it, I began having mild nausea. A few days later the nausea got worse. But, my joint pain is gone!

I called the dr. office today to make an appt. I want to see if he will reduce my dosage and slowly increase it over a few weeks. Maybe 4.5mg is just too much for me right now.

I'll keep you posted.
__________________
Cheers,
Beans


[SIZE="1"]Diagnosed February 2010
Curren Meds: 100 mg Imuran
Previously: 750 mg Flagyl, 4.5 mg. Naltrexone
05-21-2010, 04:15 PM   #2
Guest
New Member
 
Join Date: Oct 2007
hi Beans glad to hear you got the LDN so easily - sometimes it's a really difficult task getting a prescription for it, for Crohn's.

i think you're on the right track regarding the dosage and nausea.. quite a few people (me included) have started on a very low dose, like 1.5 or 2.00 and slowly increased over a number of weeks to reach the 4.5... i had no side effects doing it this way (apart from one or two vivid dreams) and i'm one of those people who are very sensitive to medications.

just a thought.. what time of day are you taking it, and if it's at night, how long before you go to sleep after the LDN? the best way is to take it right before sleep time each night, then you're asleep through the time that it's most likely to give you weird sensations.
05-25-2010, 02:38 PM   #3
Beans
New Member
 
Join Date: Mar 2010
I started taking the LDN at night around the day you suggested it and did make a difference. Thank you. I am not nauseous anymore. So, it may not be necessary to reduce the dosage after all.
05-25-2010, 02:42 PM   #4
suzielouwhoo
New Member
 
Join Date: Apr 2010
Location: Ontario
beans,
i have been taking ldn for 2mos now and i had a period of adjustment where i was nautious and dizzy a lot but it eventually cleared up after the first month and a half and am feeling good now.
susan
05-27-2010, 09:49 PM   #5
RobK
Member
 
Join Date: May 2009
Hi Beans, I've been on LDN for a year now. No side effects and I haven't had a flare up since I started on it.

RobK
__________________
4.5mg Low Dose Naltrexone (LDN)
Miracle Mineral Solution (MMS)
On Specific Carbohydrate Diet (SCD) but have started to introduce new foods
05-31-2010, 03:29 PM   #6
loveag
New Member
 
Join Date: May 2010
in a few weeks. just waiting on a little cash to come in and then i will get started right away.

though i dont have chrons, i am hla-b27 positive...joint problems in the past gone with bio-identical hormones and selenium and kelp for thyroid antibodies. some bowl discomfort caused by milk, though interestingly not caused by raw milk.

i had a lot going on with me including allergies. bio-identical hormones addressed everything but the allergies and iritis. iritis (swelling of the iris is the most scary part of my condition as it can lead to blindness). has ldn addressed iritis for anyone?

i read on another site that glutathione (potent cell created antioxidant) iv therapy and ldn address a lot of crohns problems. i also have read extensively on alpha lipoic acid being the next best to glutathione and a precursor to glutathione, which can only be made intracellularly. raw eggs, raw milk, avocados, brocalli, spinach, garlic, walnuts and especially aspargus and milk thistle increase glutathione in the body. i learned also that acupuncture helps in allergies and iritis.

so i will be increasing my alpha lipoic acid, eating foods that increase glutathione and going on the ldn therapy within the next month. i am interested in learning how many do alternative complimentary therapies. and have they helped you?

thank you so much again for creating this board and documenting your experiences. it helps so much to have paths outside of predisone, embril and humira.

`flamey
05-31-2010, 09:44 PM   #7
D Bergy
Senior Member
 
Join Date: Apr 2007
I use Miracle Mineral Solution to rid myself of bad bacteria in my intestinal tract. That was the only alternative treatment that worked for me, although I tried a few others.

The initial use for four weeks brought me back to normal. I used it for two more weeks just to make sure. I only use it occasionally now. I think the Low Dose Naltrexone keeps everything in balance most of the time.

LDN and MMS are two of the most important Crohn's treatments I use.

Dan
__________________
Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
05-31-2010, 11:05 PM   #8
loveag
New Member
 
Join Date: May 2010
thank you so much. amazing information you are giving me. i will certainly follow up. i have a gut feeling (no pun intended) that all auto-immunes are connected and often what helps one helps another. god bless you for getting back to me. hugs ~flamey
06-01-2010, 02:57 PM   #9
Beans
New Member
 
Join Date: Mar 2010
Hi Flamey,

I don't use any alternative treatments. Although, while I was waiting to be put on a maintenance drug I took essential fatty acids. Don't know if they really do anything (supposedly help with inflammation). But, I figured it couldn't hurt.
06-10-2010, 08:32 PM   #10
phillycrohns
Senior Member
 
Join Date: Sep 2009
Location: New York, New York
HI Beans:

I have been on LDN for about 6 mos with mixed results-though now that I have received intravenous ALA treatment, I am hoping that I am on the road to recovery. But I too started off at a lower dose and worked my way up, which resulted in very minimal side effects. I was on 1.5mgs for 2 weeks, then 3mgs for 2 weeks, then the full 4.5mg dose.

Good luck! I hope it works for you. It has been a godsend for many others!

Chris
06-11-2010, 08:33 PM   #11
loveag
New Member
 
Join Date: May 2010
thanks so much beans. wonder why i am not getting email updates on replies.

beans, i am also taking omega 3. started just couple days ago.
06-14-2010, 10:19 PM   #12
RobK
Member
 
Join Date: May 2009
Dan, I've read about some controversy over Miracle Mineral Solution. What's your take on it and which brand do you recommend?

RobK
06-15-2010, 06:50 PM   #13
D Bergy
Senior Member
 
Join Date: Apr 2007
I do not really use any particular brand, but I did buy it from someone who I trust.

I am not sure what the controversy is regarding the product. It is not completely harmless. I am sure you could, under the right circumstances, have a problem while using it. I always tell people to use it cautiously as it is powerful. Anybody can have a bad reaction to some substance, and this is no exception.

It has been banned in Canada, and Australia, mostly because it is not an approved drug. I am sure some people have had adverse, or what they perceive as an adverse reaction while using it.

It is an oxidizing treatment, like ozone, or Hydrogen Peroxide. It oxidize bacteria and other pathogens that are acidic in composition.

I do not use it all of the time, because oxidation is a useful thing for killing pathogens, but is not something you want going on in your body continuously. When not using it, I am taking antioxidants to prevent unnecessary oxidation.

It sounds contrary, but it is a matter of too much of a good thing, is no longer a good thing, if that makes sense.

Dan
06-24-2010, 08:04 PM   #14
Gue33
Senior Member
 
Join Date: May 2010
Location: Alberta
What does MMS stand for?
06-25-2010, 09:56 PM   #15
RobK
Member
 
Join Date: May 2009
Miracle Mineral Solution...I actually found a supplier in western Canada.

I'm going to start on it next week and will post updates.

RobK
06-25-2010, 10:48 PM   #16
Gue33
Senior Member
 
Join Date: May 2010
Location: Alberta
WOW, looking forward to your information. I finally found a guaranteed supply of VSL3, it has been a year looking for one. This is all good.
06-26-2010, 01:59 PM   #17
D Bergy
Senior Member
 
Join Date: Apr 2007
Is VSL3 hard to get normally?

I though it was available from many places?

Go slowly on the MMS. It has a way of sneaking up on you, as you increase the dosage. Nothing, nothing, then wham.

Dan
06-30-2010, 10:33 PM   #18
Gue33
Senior Member
 
Join Date: May 2010
Location: Alberta
Always careful, thanks for the warning.
Yes VSL3 is/was difficult to obtain, up here in northern Alberta. I traveled two hours to the nearest health food store and found it once. After that they didn't keep stock, they offered to send it on the bus. I couldn't take that chance, it needs to be refrigerated and the bus is not reliable on phoning when a package is in. We finally have a store that will bring it in. Believe it or not we are not remote, just no market for it I guess.
07-09-2010, 11:45 AM   #19
Beans
New Member
 
Join Date: Mar 2010
Hi everyone,
It's been awhile since my last post. I have been on LDN for two months now. I am sad to say it is not working. I've been flaring for about 6 weeks now. It started getting pretty bad a couple weeks ago. Five days ago I eliminated all fruit and veggies from my diet and really anything with fibre. My tummy is calming down a bit. Instead of going 6x/day now it's 3-4x. But my joints are aweful. If I don't take Celebrex, I can hardly walk.

I am really exhausted and frustrated that the LDN is not working. I see my GI in 10 days and I am going to suggest that I try something else as I really can't take it anymore.

I also have a meet and greet appt with a naturopath on Wed. I want to explore that route and see what she thinks she can do for me.
07-09-2010, 06:23 PM   #20
Dekar
Senior Member
 
Join Date: Oct 2006
Beans, that's disappointing to hear. As someone who just got out of surgery, i'm thinking of trying LDN as a long term treatment. With all the positive results people post online about the drug its important to see that someone says it does not work. Can you tell me the filler used in your pills? Also, is there a reason you are stopping the pills (side effects?) The reason I am asking is people claim to say it works in 2-3 months and you are around that mark.
07-11-2010, 11:30 PM   #21
RobK
Member
 
Join Date: May 2009
Hi Beans, not sure if you've already heard about this but many say candida will cause LDN not to work. Have you looked into this?

RobK
07-12-2010, 12:18 AM   #22
Guest
New Member
 
Join Date: Oct 2007
Hi Beans, not sure if you've already heard about this but many say candida will cause LDN not to work. Have you looked into this?

RobK
Beans - also have a look at this site which Rob posted on another thread - http://www.ldnscience.org - this is their response to a member's question about dosage....

As explained on this website, LDN dose is a matter for individual titration. This is usually done under the instructions of the prescribing physician and is determined by your response to the dose being used. The effective dose ranges from 2.5mg to 10mg daily. So if 3mg works for you there would not be a reason to increase the dose.


i'm wondering if the dose you're on isn't effective enough and maybe needs to be adjusted?
07-19-2010, 08:01 PM   #23
Beans
New Member
 
Join Date: Mar 2010
Hi Dekar,

I am stopping the LDN not because of side effects of the drug itself, but because I have been flaring. Actually, my tummy seems to have calmed down a bit the last three days, but my joints are aweful. I'm not sure what the filler is, but the compound is lactose free if that means anything for you...

I saw the GE today and we decided to wait one more week before making a decision. He put the idea of me taking Flagyl. If that doesn't work, he feels Imuran and/or Remicade may be my best bet.

I think I'm in a little bit of denial still. I can't believe that I am going to need to take something for the rest of my life. I was really hoping the LDN would work. It really appealed to me since it is an immune enhancer. I'm frustrated.

PHILLYCROHNS - what is an ALA treatment?
07-20-2010, 07:50 AM   #24
Beans
New Member
 
Join Date: Mar 2010
I haven't heard about candida possibly causing it not to work. I can ask my naturopath about it when we meet next week.

However, I see the GE again in one week and we are most likely going to try another drug. Depending on how I'm feeling this week, I may try to push it a little longer.

However, my GE has never prescribed LDN before me. So, he does not have a lot of experience with it and it not so determined to push me to stay on it. He is very nervous that a big flare is around the corner.
07-20-2010, 08:06 AM   #25
D Bergy
Senior Member
 
Join Date: Apr 2007
I hope the LDN start improving things for you. The joint problems are almost certainly from one of several bacteria that can cause Arthritis like symptoms. Your body is fighting this bacteria, as it should. Inflammation is the result. It will take a while before it is able to remove it, and it is also possible it will not be able to remove it, but that remains to be seen.

I do not think flaring is that uncommon while starting LDN, but it should go away once the pathogens the immune system is fighting are gone or reduced.

I did not have the flare when starting it, because I already had reduced the anaerobic bacteria using Miracle Mineral supplement. All the immune system had to do is maintain my lack of pathogenic bacteria.

Low Dose Naltrexone works most of the time, but possibly you will not be able to use it. It takes time to know for sure. Six Months is the time frame they say to use to assess effectiveness.

Good Luck

Dan
07-20-2010, 08:35 AM   #26
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Beans I know you are in Ottawa, how did you find a chemist to make it? Kev was on here and he told me last year of one in Toronto but he isnt active at the moment and I never did find out where it was located. I may not be able to get the script until end of Sept so I have time. Thanks for any info you can give me.

Dan: You say MMS isnt in Canada any more?

Penny

Last edited by Crohn's 35; 07-20-2010 at 09:41 AM.
07-20-2010, 09:34 AM   #27
D Bergy
Senior Member
 
Join Date: Apr 2007
It is illegal to sell it in Canada and Australia, but it is such a common chemical I am sure you can still get it. I can buy antibiotics through the internet and just about anything else, so I am certain MMS can be had.

I will do some checking with someone I know. I will PM you if I find out anything.

Dan
07-20-2010, 09:43 AM   #28
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Thanks Dan, much appreciate it! Obviously time not factor, can't get anything til end of Sept. My current Gi is very open minded, and I doubt I will get another Gi quickly, so it would be nice to get out of pain and symtoms now. Thanks again.
07-21-2010, 11:12 AM   #29
RobK
Member
 
Join Date: May 2009
I found a supplier in Alberta, Canada. They sell it under the name of "Water Purification Drops". You can order online or over the phone as I did.

I ordered the starter pack...including shipping costs it worked out to about $45. The supply is enough for at least 3-4 months. Gentleman on the phone was also very helpful and knowledgeable.

Here is link:

https://www.subtleenergytherapy.com/xcart/home.php

RobK
07-21-2010, 11:25 AM   #30
D Bergy
Senior Member
 
Join Date: Apr 2007
How has it been working for you lately Rob? I am trying to get some accurate feed back on this. Last I heard you had stopped using it for a while.

Noticed any improvement, or worsening?

Dan
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