Low dose naltrexone

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+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/14/2009 8:06 PM (GMT -6)   
Hello,
 
I am from the Lyme Disease message board, but I am not here to see who may or may not have Lyme. I am here because of info given to me regarding Low dose naltrexone.  It sounds miraculous and I am extremely interested in learning more about it.  I understand that this drug has been very significant in the treatment of dozens of illnesses/diseases  -- especially  MS.  This info was passed to me specifically as a treatment for lyme disease.
 
Can anyone tell me what they know about this drug or about their experience with it?
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3529
   Posted 6/14/2009 8:20 PM (GMT -6)   
Hey +Lyme,
 
I think we have one member that uses LDN.  So far so good is the verdict.  You should also post on the chronic pain board.  There is a member there that LOVES it.  She is having good success with it.
 
The jury is still very much out as an MS treatment.  So far there is no real credible research that is supportive of LDN as a treatment.  There is some evidence that it may be a good med for treating symptoms.  That has value too.  The bottom line is, it seems quite safe and it is very inexpensive.  I say if you are intrigued, then give it a try. 
 
I hope you find a successful treatment.  If you do try LDN, please let us know how it works for you.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/14/2009 11:32 PM (GMT -6)   
Hi +Lyme,

I have just started using low dose Naltrexone (10 days at 3mg) and I have experienced three positives. My left leg which is usually very stiff is much softer at night I can curl up on my side which I could never do before. The other night I woke up cold so I decided to put on some socks. I actually bent over and could reach my feet which I have not been able to do for more than 5 years. This was really exciting for me!!!! This all happens at night I think because you take the naltrexone then and it gives you a spike in the night. I have not seen any change in the daytime yet. NO negative side effects so far.

I also sleep better and dream (nice dreams) a bit more. If you go to ThisisMS there is a thread there. One guy has gone from a wheelchair to walking another lady says she feels great but does not mention anything else. It seems like everything the results are very personal. Two things - you have to have it made up by a compounding chemist and make sure they use unaltered naltrexone and do not just grind up conventional naltrexone as this is slow release. Also it clashes with certain drugs. On the ThisisMS website you will find a link to Crystal who has has great success with it and has her own web page.

Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


twnkle59
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/15/2009 3:48 AM (GMT -6)   
HI I AM A NEW MEMBER , CAN ANYONE HELP ME
I HAVE UNDER ACTIVE THYROID OVERACTIVE BLADDER HAD AN ANEURYSM AND HAVE B12 DEFICIENCY
I WAS DIAGNOSED WITH FM 2 YEARS AGO BUT LAST YEAR WENT BLIND IN ONE EYE ONLY FOR FEW MINUTES
BUT SINCE THEN HAVING MAJOR PROBLEMS. ( NUMB IN ONE FOOT AND HANDS . BURNING, TINGLING ,SHOOTING PAIN ALL OVER
TALKING MUMBO JUMBO, MEMORY AND CONCENTRATION WALKING AND BALANCE BAD . )COULD THIS BE SIGNS OF MS
I AM GOING TO SEE A NUERO NEXT WEEK. WHEN I WENT BACK TO SPECIALIST FOR FM SHE SENT ME FOR MRI BUT THEY COULD NOT DO THIS AS I HAVE METAL CLIPS IN MY HEAD . SO SHE HAS REFERRED ME TO NEUROLOGIST WHAT OTHER TEST WILL DETECT MS MY BLOODS ALL CAME BACK OK FOR THYROID ETC I GOT AN APPOINTMENT IN LESS THAN THREE WEEKS FOR NEUROLOGIST COULD NOT BELIEVE SO QUICK . GETTING A BIT WORRIED . smhair

Post Edited (twnkle59) : 6/15/2009 11:33:59 PM (GMT-6)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/15/2009 8:47 PM (GMT -6)   
Thank you so much for your inputs, Gretchen and Popsie! I appreciate it!   From what I"ve read so far and from the remarks you've made about people you know, and remarks I've received from others, I don't understand why more people aren't trying it?

Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3529
   Posted 6/15/2009 9:20 PM (GMT -6)   
+Lyme,
 
It seems like if you aren't having any luck with anything else, that this is a safe way to go.  It has been around for a long time  and is apparently very safe.  It can be a little tricky getting a doctor to prescribe it.  I hope it works for you, if you decided to give it a try.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/15/2009 9:54 PM (GMT -6)   
Hi +Lyme,

Here is Crystal Nason [angelindisguiseldn@yahoo.com] address. She has had great success with LDN, is in US & has a list of drs who will prescribe LDN if you are having trouble. I just went into my local clinic and saw a dr and told her I wanted LDN. She had never heard of it (!!!) & was a bit worried. It is only available as a 50mg slow release tablet for drug addicts. When she heard that I only wanted a script for 3mg per day she was happy to oblige. She said I must go for kidney & liver bloodtests after 3 months which I am happy to do & to remembert her when I become famous.

You have to get it made up by a compounding chemist and it MUST be the unaltered QUICK release drug.

If you read the Chronic pain board you will see a lot about LDN including some old posts they pulled up for me.

I think one of the reasons you do not hear much about it is because you cannot take it with opiate (Ithink) drugs as it cancels them. That apparently includes a lot of drugs for MS & pain.

Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/17/2009 6:31 PM (GMT -6)   
Thanks, popsie! Sorry, I'm a bit behind here, due to a big, crappy, dental emergency, but I really appreciate the input and referrals. I will be seeing my first Lyme Dr in just less than 2 weeks and I plan to ask him for this! (i'm not on any opiates, except for today w/ my dental surgery)

Maybe I will turn out to be a good little guinea pig......

Thanks again!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Arfanna
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 6/23/2009 4:03 AM (GMT -6)   

My other half has taken LDN since being diagnosed and swears by it!

MS is so predictable in its unpredictability I guess its difficult to make any sweeping generalisations about its use but it has meant a relatively symptom free existance for 5 years for him

LDN and the power of positive thinking seem to be very powerful in his case

Can certainly recommend it - get the doseage right - started at 3mg and since have moved to 3.7mg but its all individual

No side effects that he has experienced other than at higher doses (4.5mg) its caused his legs to tingle (not an MS sign)

give it a go....

Anna x

 

 

 

 


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/28/2009 6:20 PM (GMT -6)   
Hey Twnkle,

So sorry to hear you are experiencing such scary stuff. Sounds awful but obviously we cant diagnose so I am pleased you are getting to see your neuro soon. He will know the best tests to give you. I do not think it is MS might be more FM stuff.

Good luck. Hang in there & I am sure you will get some answers.

Let us know what the dx is. :-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/29/2009 9:19 PM (GMT -6)   
Hi all,

This is a follow up post about my experiences with LDN.
My MS predominately affects the left side of my body.

After 2 weeks on 3 mg dose my left leg became nice and supple and bendy at night (after I took the naltrexone). I could lie on my side for the first time in more than 5 years. But by 7 am it was stiff & inflexible again.

After 6 weeks on 3mg of LDN I notice that my left leg is supple for longer. At about 10.30 am today I knelt and cleaned some stains off the carpet. I was also been able to kneel and get something my dog wanted from under the couch. Usually the spasticity in the leg tips me forward when I try to kneel and it is a real battle of wills between the stiff leg and me.

I am also noticing that the dexterity in my left hand is improving. I am typing easier as the left hand is straightening (the last three fingers had become bent and clawlike) and is more flexible.

Side effects - I have to be careful to avoid getting constipated but al long as I have a couple of drinks in the day and be sure to eat some fruit & some dried fruit all is good.

Otherwise I feel fantastic and hopeful of more improvements.

Will post again if there is anything interesting to report. smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/30/2009 10:43 AM (GMT -6)   
Popsie, this is FANTASTIC news! I am so happy for you! I left the research I'd found on LDN w/ my new Lyme Dr this morning -- he was not familiar w/ it. I would really like to try it! Your improvment is really exciting!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 7/2/2009 10:05 PM (GMT -6)   
Hey +Lyme,

Thought I would keep you up to date.

Firstly a warning - do not get carried away. I decided that I could run before I could even walk properly. Feeling so good that I tried to carry a heavy bag of groceries and landed up on the floor looking at the ceiling. No breakages to me or the groceries so that was good. But getting up is always the hard part cos my left leg goes stiff and makes it really difficult to get up.

BUT NOT THIS TIME. I rolled over onto my front and found I could bend both legs so I could kneel and from there standing was a breeze. Hey, isn't it great to be able find good news in a fall. Thanks to LDN
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Jin_Rou
Regular Member


Date Joined Aug 2009
Total Posts : 24
   Posted 8/27/2009 10:22 PM (GMT -6)   
So far LDN seems to make my MS worse at night with increased stiffness and tingling. In the day time I cant tell if I am better or worse, but its sporadic. It has not helped my stomach yet either.

It has only been a week, so I am hopeful that I will improve, but so far I am still waiting for results.


Even with the conventional therapies for Crohns and MS, no treatment works for everyone. I did see a study that suggested that LDN actually slows progression and not just symptoms. It was a 2 year study. Its not surprising that short term 2 month studies would not show benefits for disease progression, considering that LDN makes many people worse before they get better and 2 months is nothing as far as evaluating disease progression. Most people dont progress much in 2 months unless they have a major attack, and LDN is not a treatment for treating acute attacks.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/27/2009 10:58 PM (GMT -6)   
Sorry you feel bad that must be very offputting, hope you can hang in and see some improvement soon. Yes, you are definitely right that everyone reacts differently to every drug.

I saw this article :

LDN for Multiple Sclerosis – Dr. Maira Gironi, an Italian neurological researcher, treated 40 patients affected with Primary Progressive MS (PPMS) with LDN for six months, concluding that LDN was not only safe and well-tolerated, but halted the progression of the disease in all but one patient. The results from this pilot study were published in the journal Multiple Sclerosis in September 2008

but I do agree with you that 6 months is not long enuf to conclude that it helped halt progression. I will need to go at least a year without any new symptoms to begin to think that LDN is halting the progression.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."

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