cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
there's a website called
lowdosenaltrexone.org
that touts the use of low dose naltrexone for certain autoimmune diseases.
I wonder if it could be helpful as part of a regimen to fight Lyme? If it helps strengthen the immune system or not?
here's an excerpt from the site:
"The apparent mechanism of action of LDN in this disease parallels that in AIDS and other immune-related diseases. A small dose of the drug taken nightly at bedtime doubles or triples the endorphin levels in the body all of the next day restoring levels to normal.
Since endorphin levels are low in people with MS, immune function is poorly orchestrated with significant impairment of the normal immune supervisory function of CD4 cells. In the absence of normal orchestration of immune
function, some of the immune system cells "forget" their genetically determined ability to distinguish between the body's 100,000 unique chemical structures (called "self") and the chemical structures of bacteria, fungi, parasites and cancer cells (called "non-self").
With this loss of immunologic memory, some cells begin to attack some of the body's unique chemical structures. In the case of people with MS, the tissue attacked by immune cells (particularly macrophages) is primarily the myelin that insulates nerve fibers.
These attacks result in scars in the brain and spinal cord called plaques. LDN in such patients works by restoring endorphin levels to normal, thereby allowing the immune system to resume its normal supervision and orchestration."
is this a drug worth trying? would it protect the lyme brain from damage? anyone have any knowledge of this?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
My LLMD (Kenneth singleton)has discussed this with me for the reasons you mentioned. His book , the "Lyme Disease Solution", talks about this, I think. My memory is not great (no reflection on my Dr. Posts: 520 | From Maryland | Registered: Jan 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
you are so right, joysie -- the ad for singleton's book has an excerpt, kind of a teaser, about naltrexone.
apparently, low dose naltrexone not only increases endorphins, but by doing so decreases inflammation.
right now I'm taking benicar (not the standard Marshall Protocol), and it does make me sleeepy.
I wonder if this would be a good alternative to benicar? and if it would be more, or less, effective because it would not have the hormonal effects of benicar.
ideas anyone?
Posts: 1173 | From USA | Registered: Nov 2007
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dmc
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Member # 5102
posted
took it for 2 years for MS before finding out Lyme...Went to the founding Dr. in NYC. I kept progressing,really stiff limbs, stiff trunk. Then started getting pain & swollen joints while on it.
Dr. knew something else going on...found a LLMD positive for Lyme in 2003. The LDN dr. was thrilled found tyhe cause of my "MS". So lyme induced MS like so many others here.
I can not take it while on abxs...get ill 1 hr. after taking it. Nausaus, faint, heart palps. No... not on narcotics since that's a no-no w/LDN.
Haven't tried it again for couple years. Suppose I could see if I have same reaction.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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cottonbrain
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posted
that sounds awful! since going off the LDN are you doing better, and is it due to abx?
Posts: 1173 | From USA | Registered: Nov 2007
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dmc
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Member # 5102
posted
I had reconstruction surgery on left foot/ankle and need right foot done but sloly went downhill after surgery.
On crutches & cheat and use wheelchair to do chores/get things done and if have to walk too far.
LDN is very inexpensive, like $40.00 a month. Definately worth a try and your post is prompting me to look for leftover LDN to try again.
I do believe the LDN help immune recognize the lyme and maybe that's why I swelled and had pain.
Don't discount it...I was just giving you my experience.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
LLMD suggested LDN for my husband; I believe he said it was developed as part of a cancer intervention.
Husband has been taking 3 mg at bedtime for about 6 weeks. No way of knowing if it's having any positive effect, but it hasn't been a problem for him to tolerate it.
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
I have been taking it for almost 2 years. Lyme/ M.S. Are they one in the same? Any way I resently ran out, I mix up my own from 50mg pill form. And its been almost 2 weeks without it and I can really tell the diference.It gives me more strenth and over all I feel much better.I sure hope my shipment arrives soon !
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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cottonbrain
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Member # 13769
posted
thanks, everyone, for your input. I see my LLMD next week, so I will ask if he thinks i should/can try it.
DMC, I also had foot surgery (20 months ago) and since then the pain has been so bad that it's really affected my health.
for those who have tried LDN, did you notice if it raised your pain threshold?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
My son was just rx'ed LDN by his LLMD. He is HLA DR4 positive and has lots of inflammatory responses and herxing. Constant headache for over six years that hasn't responded to meds since his first IV tx. We are supposed to start at 4.5 mg, but I will talk to the pharmacist about titrating up. I have joined the yahoo LDN group to learn more: http://health.groups.yahoo.com/group/lowdosenaltrexone/
Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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posted
I started LDN (at 4.5mg) last fall. I took it for 3 months and was not sure I was getting any results, so I stopped taking it.
Well, I could certainly tell that I stopped taking it! My menstrual cycles got much worse (again) and in general, my hormones seemed to be out of control.
I went back on it and have stayed on it for about 3 months now. I will stay on it while I am treating the lyme and bart. No bad side effects, I take it at night.
Someone posted a doctor's name on this thread - shouldn't we not do that?
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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AliG
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posted
quote:Originally posted by CraigC: "I have been taking it for almost 2 years. Lyme/ M.S. Are they one in the same?"
No they are not. But, you will have those who will tell you that they are, despite no definitive research on the matter.
You will also have those who will tell you they are not, despite no definitive research on the matter
(sorry, couldn't resist )
I have just been told that I likely have "MS secondary to Lyme".
I would guess that would mean that Lyme can cause MS.
Lyme Disease is the actual disease caused by the bacteria Borrelia burgdorferi, MS is what happens when your immune system gets a little confused by the molecular mimicry of the Borrelia and takes out some of your own cells.
I just read recently that they believe MS originates when a bacterial, viral or some other type of assault damages the cells responsible for myelin generation. The immune system then sends out the "clean up crew" (the cytokines) to mop up the mess. They promptly start cleaning up the damaged cells & the myelin.
I wish I could remember where I read that. Darn! Sorry I can't cite it here, if I come across it again, I'll try to remember to come back. Don't count on it though because I'm really a mess right now.
Thanks for posting this thread, this does seem very interesting.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Ive been on low dose naltrexone for about 18 months now and i definitely feel it is helping. One thing i noticed is that it seemed to help me sleep better. (tho the first few days on it are the opposite) Ive read alot about it and really feel it is something worth doing for the immune system at very little risk. good luck!
Posts: 45 | From PA | Registered: May 2008
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cottonbrain
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Member # 13769
posted
Ali and Windmill, thx for reviving this thread.
When I saw my LLMD i had it written on my list of things to ask, and I never had time. So thanks for reminding me.
I do have hashimoto's and hormonal issues, so i am interested in trying this.
Did anyone notice if it helped with inflammation? Headaches? Neuropathies?
Posts: 1173 | From USA | Registered: Nov 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
quote:Originally posted by cottonbrain:
for those who have tried LDN, did you notice if it raised your pain threshold?
I have an experience with LDN and painkillers that might be useful.
About a month into it, I sprained my ankle HORRIBLY while playing Ultimate Frisbee (yep, that's a reflection on how good I feel- I was playing with a bunch of younger people (I'm 36 and was once disabled by Lyme), got bored with the way the girl I was guarding was playing, and went to guard a much more aggressive, faster, and athletic young guy because I could).
After I got done with a wild round of swearing because of how bad the ankle sprain hurt (it cracked loudly and we thought it might be broken at first, and it then swelled like nothing any of us had ever seen), I actually took some Percoset for a couple of days. I don't think I was feeling an abnormal amount of pain- this was one of those 'bone bruise' types of bruising cases where the sprain caused rapid swelling that bruised a huge purple band about 10" high all around my ankle. Gross.) . I was really worried that LDN would affect my ability to use the painkillers (I also used ibuprophen). It didn't seem like it changed either the level of pain or the percoset. I'd recently seen a friend experience a similar looking 'bone bruise' and I think I reacted just like he did in terms of painkiller use.
I'm not sure I should have been using percoset while on LDN- I didn't consult a doctor- I just had some left over from a medical procedure.
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