posted
I thought i would start a LDN thread since there seems to be a bit of activity here about it...plus it may give peope an easier refrence place to find out about it
I will share my experience thus far...
I started LDN at the end of Dec. after trying to convince my Dr. for months to try it. It is doing wonderful things for people with Autoimmune diseases, and it seems to work 50/50 with people who have Lyme.
I figured I had nothing to lose.
I started at 1.5mg mostly because I have Hashimoto's, which can be affected by the LDN and we did not want me to go all hyPER and have a new set of issues. I stayed at 1.5mg for about a month with no noticable change beyond insomnia which comes and goes...but I already was dealing with that so it isn't anything new for me.
I then upped the dose to 3mg and have been there since. Initially I noticed nothing again, but several weeks ago I felt a shift...I went off all abx and then noticed a HUGE improvement...it did not eliminate my symptoms, but I felt BETTER. I continue to feel better and better as time passes.
My unscientific opinion is that for *me* I needed to go off abx to feel a difference. LDN works to correct certian aspects of your immune system. Abx act *as* your immune system while you are on them. For me, the battle between the 2 things trying to do their job was making me feel awful. I want my immune system to be able to do its job!
I believe that Lyme cannot be cured, but CAN be something that gets to a 'maintenance' place. If your immune system is healthy enough to work properly, you can be in remission for...??? I believe with the LDN, and the right support I can do just that.
Another change that has happened is my thyroid. I have had Hashi's for years. No matter what med I was on my thyroid antibodies were well over 900, and my free T3/T4 were all over the map...though my TSH was within normal range. Nothing was fixing my antibodies.
Well, my last thyroid labs that were done about 2 weeks ago say that my thyroid antibodies are down to 20. From over 900. Not too shabby! I am hopping now that my body will catch up, and my thyroid 'symptoms' will start to go away as my body catches up.
As for side effects? I have bouts of insomnia. They are usually worse when you start/change the dose and last for about a week...though for me I have it off and on. Is it due to the LDN? I don't know as I have always had problems with insomnia. I also find that I usually have to get up in the middle of the night to use the bathroom...but again, could be the LDN or not.
Beyond that I have noticed no ill effects. I do take it between 9-10 at night.
HTH! Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Bump
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
What kind of thyroid medicine are you on?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I take 105mg Armour Thyroid. I expect that I will have to lower that dose though...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
raw vegan, this is wonderful news, did did LDN help your fatigue or pain (if you had any)...?
Posts: 723 | From Montreal | Registered: Oct 2010
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Did it help you loose any weight?? Have you tried plaqenil too?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I am experiencing less pain and fatigue, but I do not know if it is a direct result of the LDN or simply where I am at health-wise. I would say LDN *may* have heped with fatigue, as I have Lyme and Hashi's, both of which cause fatigue...my fatigue is DEFINITELY better, though not gone. My Dr. did up my dose again to 4mg so we'll see what happens when I start taking that dose.
It did not hep me lose weight. I am struggling still with and extra 15lbs that I am hoping will find a new home now that I am dealing with yeast...
I have never been on plaquenil...too scared of the side effects to ask for it.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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tricia386
Frequent Contributor (1K+ posts)
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posted
MY LLMD just put me on it for cyst busting of the lyme ugh all these medicines make me scared
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Naltrexone for cyst busting? I have never heard of that...are you sure its low dose Naltrexone he has you on tricia?
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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tricia386
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Member # 29623
posted
no no plaquenil for cyst busting, they put me on 2 mg to start. I am excitied to start it for my hashimoto!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
no no plaquenil for cyst busting, they put me on 2 mg to start. I am excitied to start it for my hashimoto!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Yeah, I am pretty happy that it helped SOMETHING, lol...I am hoping now my body will catch up and I will have less thyroid symptoms, and maybe lose some of this extra weight!
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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tricia386
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posted
What miligram are you on runner?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Right now I am on 3mg, but my Dr just upped it to 4mg. I am waiting to finish my current bottle as I pay out-of-pocket for this, then I will go up to the 4mg.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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dmc
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posted
I went to the founder of using Low Dose Naltrexone (LDN) for my MS (which turned out to be Lyme). I did 2 yrs at 4.5mg.
Just to tell ya, LDN causes increase endorphine production WHICH in turn helps you feel better.
He, the founding dr., used to say it gives one the "sense of well-being".
I had to stop it while doing abxs. Whenever I took it an hour later I'd feel like I'm dying, w/shortness of breath, heart palps, sweats, shaking etc.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
BTW do a search (mechanism is above under the "post a poll") Lots of past posts regarding LDN or Low Dose Naltrexone. Searh both titles,
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
dmc, that is very interesting, your reaction whie on abx...I went off my abx bc I felt like I was being poisoned, and wondered if the LDN and abx were working against one another...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
dmc, did LDN help with your MS sx?
Posts: 723 | From Montreal | Registered: Oct 2010
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tricia386
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Member # 29623
posted
Im starting it tonight keep u posted. I am currently on now antibiotics so we will see what happens
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I was told either take ABX or LDN but not both.
Posts: 125 | From US | Registered: Jul 2009
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tricia386
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Member # 29623
posted
not** On
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
One of the things that can happen after starting LDN is you get sick. As in, 'regular people' sick. I got 2 colds in a month after not having a normal sickness(aside from Lyme) in years. It is a sign your immune system is starting to respond...a good sign!
Shahbab, I do not know this for sure, this is my nonscientific theory...abx act as your immune system while you are on them. LDN is supposed to get your actual immune system to work. I found for me, the two together were not a good mix, and it felt like it was a battle. When I went off abx, I felt MUCH better, like, within a day or so. Now that I am off abx and just on LDN(and other supps.) it feels like it is doing its intended job.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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Razzle
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posted
But I get sick all the time anyway - with colds, etc.
Sore throat is mentioned in the list of side-effects for Naltrexone (the 50mg dosing info, not the LDN info), and so I'm trying to figure out if I have a legitimate illness or if I'm having side-effects from the LDN.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Any updates from the LDN users?
Posts: 227 | From Northeast | Registered: Mar 2010
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ktkdommer
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Member # 29020
posted
Does LDN expire quickly?
I stopped taking LDN a year ago becaue it made me feel terrible. I started for lupus, but learned later it was Lyme.
Now I keep saying I am going to start up again but do not want to go back to all the aches while trying to work full time and cure 2 teenagers.
I hope more people talk about their experiences. I know I joined an LDN yahoo forum which was active for a while.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Just an update: I am continuing to feel fantastic. I am on 4mg of LDN and doing great. I am using Salt/C as well as OLE for Lyme aong with my usual supplements, diet and dealing with Candida. I also have been in the process of having my marcury fillings removed with no ill-effects which I believe is due to the fact my immune system can handle it. I will say, my food allergies, which have been pretty mild for a while are back in full force. I will take it though, as I am feeling so much better!
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
I am also very interested in LDN and would appreciate any feedback from Lyme patients.
I have done a few years of various antibiotics and feel about 90% most of the time. I still have some gas with carbs (bacterial overgrowth as opposed to yeast), mild twitching at times, occasional cold hands and feet, occasional irregular heartbeat related to digestion, occasional night sweats. Normal energy and clear head.
I am thinking LDN might be a very good thing now that I am off antibiotics and feeling better, and would love any feedback from other lyme patients.
Posts: 770 | From USA | Registered: Jul 2006
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TX Lyme Mom
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Member # 3162
posted
The excerpt (below) taken from this link offers an hypothesis about why LDN (and also ceftriaxone, Rocephin) is/are effective for treating Lyme by reducing glutamate accumulation.
"The Glutamate Link "In the Mayo Clinic Study published in October 2008, Dr. Vanna Lennon and her team have demonstrated that glutamate accumulates in the brain of patients with neuromyelitis optica. They propose that this is a result of NMO antiboides leading to glutamate excess. Dr. Lennon's study suggests that glutamate is responsible for the myelin destruction in this disorder.
"Dr. Hong has previously shown the destructive role of glutamate in Parkinson�s disease. Dr. Yash Agrawal has explained how glutamate toxicity causes symptoms in both Lyme disease and multiple sclerosis. Dr. Agrawal explains that the ability of the beta-lactam antibiotic cefrixatone to reduce glutamate accumulations accounts for its effectiveness in Lyme disease. He proposes that both cefrixatone and low dose naltrexone, by having the potential to reduce glutamate accumulations, have therapeutic value in Lyme disease, MS, and other neurological disorders.
"Thus, while the Mayo researchers propose finding ways to block glutamate, the benefits of low dose naltrexone and beta lactam antibiotics lie in their ability to reduce glutamate excess."
Here is the "go to" website for everything related to LDN therapy.
posted
Ive been on 4.5mg naltrexone for about 9 days. First 4 days just did half a capsule. Ive always had vertigo some since the begginning of me getting sick but it seems to be exagerated over the last 3 or 4 days. Extreme rocking motion or sudden quick spins are what Im experiencing. ldn is the only new med ive added other than melatonin. Im not on any Abx, just supplements, and detox kit. Just wondering if this is the meds or maybe my immunity has been boosted enough its fighting the lyme?
Posts: 83 | From NC | Registered: Jun 2010
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posted
Not sure, but perhaps ask your Dr if you can start on a lower dose? That may be too high for you to start at...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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