Is there hope in low dose naltrexone?

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+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 6/9/2009 8:19 PM (GMT -6)   
I'm assuming this may have been discussed at some point on this forum, but have not yet had time to go back over older posts to look for it.  This was passed along to me by a concerned friend who has a friend w/ chronic lyme.  Everything in the email sounded very promising, not only for Lyme, but MS and others.
 
I don't know why she says, ' doesn't hold much in the way of trillion-dollar profit promise for Big Pharma',  because if it works, it could certainly be a trillion dollar profit, imo.
 
Part of the person's email which was forwarded to me was a request for donations for the studies in this.  So until I do more research, I won't know if this is credible.  I will post a portion of the email below.  To those who know something about it, please tell us what you think, OK?
 
Quote: Low Dose Naltrexone -- the amazing and completely under-researched drug
that has helped thousands of people with autoimmune diseases, Lyme disease
and even many types of cancer -- is more than ready for its MS trials. As
some of you know, but most don't, the past five years have been something
of a neurological adventure for me, being first diagnosed with MS before
correctly diagnosing myself with Lyme disease, mimicking MS down to the
last, terrible detail. Thanks in great part to LDN, my life's trajectory
has been set back on course. Without it, at the rate which I was
progressing, I would have been wheelchair-bound for the rest of my life.

Because this is a pharmaceutical that doesn't hold much in the way of
trillion-dollar profit promise for Big Pharma, those that believe in the
potential for LDN are left to raise the money for the trials ourselves, and
that's why I am contacting you.

If you known someone or are sick with one of these diseases, I implore you
to check out www.lowdosenaltrexone.org.
END QUOTE


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.

Post Edited (+Lyme) : 6/12/2009 8:48:46 PM (GMT-6)


Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 6/9/2009 9:35 PM (GMT -6)   
I think she says this because LDN is dirt cheap. In comparison to mainstream MS therapies as well as therapies for other autoimmune diseases, the pharmaceutical companies are making almost nothing on LDN. It's only about $25/month, and it is usually ordered from a compounding pharmacy. I get mine sent to me from Skip's Pharmacy in Florida. They do not add the typical fillers that 'regular' pharmacies do.


http://www.myspace.com/399827188


Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 6/10/2009 2:00 PM (GMT -6)   
My LLMD just added LDN to my treatment plan and has my sons on it also. They were not noticing a difference and were just bumped up in dosage. I'm curious to see how it works for us.
www.chicagolyme.com
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 6/10/2009 8:12 PM (GMT -6)   
I have done very brief research so far, but it sounds almost too good to be true! I read that those w/ Hashimotos need to be careful because it acts so quickly, if not careful they could become hyperactive thy very quickly and have to diminish the LDN dose.

I'd like to hear more from anyone who knows about this. (and I'll contribute any more that I learn)
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.  What was this??
 
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.


Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 6/11/2009 2:52 PM (GMT -6)   
Thanks +Lyme!!! I am starting LDN (waiting for it from pharmacy) and have been dealing with Hashimoto's since 2004. I didn't know about the possible reaction. Really appreciate your post!
www.chicagolyme.com
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 


hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 6/11/2009 4:34 PM (GMT -6)   
i'm so down and out today and i read this "glimmer" of hope.


should I go to Chicago for a prescription?
Bit June 08.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/11/2009 10:22 PM (GMT -6)   
You are welcome, Weary. I was happy to be the 'giver' in possibly helpful info!

Hoping, still looking into this. This is quite possibly MORE than a 'glimmer' of hope! It does appear that you don't have to travel to get this drug. It is FDA approved for higher dose for narcotic addictions, there just have not been enough studies for the low dose. So you have to find an extremely reputable pharmacy (listed when you do the search) that can properly break down/process a higher dose into 1/10 smaller dose, encapsulate it w/ the proper fillers. Pharmacy must also have excellent quality control.

From the pharmacies listed on the website, your own Dr can prescribe and order the proper dose.

This drug boosts your immune system, increasing your killer cells, sending them off to war. There are no known side effects, except possibly in those who should not take it. What more could we ask for??

If you will do a search on it, you will find a very long list of diseases, conditions, infections, etc that have improved and/or been cured in those taking this. It includes Lupus, ALS, MS, AIDS, Chronic Fatigue, fibromyalgia, Chron's, some I forget right now, and a LONG list of cancers.

This is certainly worth looking up and asking your Dr about, which I can't wait to do! I'd rather take something that boosts my immune system than long term abx that can possibly run it down. NOT saying I will refuse abx, however, I WILL discuss this w/ Dr.!
 
And I am serious about researching this!  So if some time passes that I'm not here, it's because i'm researching this drug!


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.

Post Edited (+Lyme) : 6/11/2009 10:42:16 PM (GMT-6)


veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 6/11/2009 10:39 PM (GMT -6)   
Jendays247 said
""" It's only about $25/month, and it is usually ordered from a compounding pharmacy. I get mine sent to me from Skip's Pharmacy in Florida. They do not add the typical fillers that 'regular' pharmacies do."""

Veronica ,
there are specific HLA DRA types which are more likely to not respond well enough to antibiotics alone,

You must first get the immune system up to then start antibiotics.
This will lower the effects of a herx

We should also help our doctor by letting him know that we need to number one reduce prioinflammatory cytokines,to then reduce neurotoxins with a drug like cholestyramine.


Lyme manufactures neurotoxins which circulate in fatty tissues such as nerves, muscle, brain, lung, and bile,

this is also a cause of MS symptoms,brain fog,blurry vision, irritable bowel, lung lesions,stomach pain and inflamation , breathing pain, And many others
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Post Edited (veromia333) : 6/12/2009 11:05:06 AM (GMT-6)


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/11/2009 11:16 PM (GMT -6)   
so this is just yet another piece of treatment but a very important piece.

Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 6/12/2009 8:07 AM (GMT -6)   
My son's been on it and we also get if from a compounding pharmacy..MD Custom out of Glendale WI. He was started on 3.75 MG then was increased to 4.5MG. I'm starting on the 4.5. Ours is $54.00 for a 60 day supply.

When does everyone take it?? We were told to take it at bedtime.
www.chicagolyme.com
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/12/2009 8:58 PM (GMT -6)   
I read more on this today. It says that bedtime, or sometime between 9:00 pm and 11 pm is best. Has to do w/ our endorphines and what they are doing on the middle of our night in our bodies, (sorry, I can't retain enough info to remember exactly what's going on in the nite.)

Haven't read yet about the possibility of using it w/ abx.

Veromia, I have not been at this near as long as you, AND I'm not as sick as you, but from what I have found so far, yes, this is very significant, far as I'm concerned. I will definitely to ask my Dr for it.

This sounds very promising for a lot of people w/ a lot of diseases, including AIDS and cancer!
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.

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