LDN - Low Dose naltrexone

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Scandic
Regular Member


Date Joined Nov 2011
Total Posts : 79
   Posted 1/16/2012 6:51 AM (GMT -6)   
Hi,

Just started LDN two nights ago.

Doc has prescribed 3x 1.5mg tablets, but since I tend to be "Miss Sensitive" and get reactions from just looking at the medications, let alone taking them, I started with 1x.

Night one - slept decently, dreamed a lot, which was rather tiring, sort of like watching movies all night.

I woke up often, but fall asleep again. The rib vibrations that I have not had for a while returned, but fell asleep from those too.

Night two - could not fall asleep (know this can be a known side effect, but still awful to lie there awake for hours on end). Slept horribly. Rib vibrations, faster heart-rate.

Woke up feeling shakey and anxious and uncomfortable and had diarrhoea.

I mean, if this is just 1x tablet out of the 3x I should be building up to, and this was just two nights, then how bad is it going to get?

I'm already feeling anxious and nervous, like I am about to jump out of my hide. Frustrated that I was feeling fine on fluconazole only and now the balance is being rocked.

I feel like such a wimp, which makes it all worse of course.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13226
   Posted 1/16/2012 3:17 PM (GMT -6)   
With all the troubles you are having and the sensitivities you seem to be experiencing, Scandic, have you ever considered treating your infections in a more natural way? If you have no desire to do this, don't worry, I promise to not hound you - it's just a thought.
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 1/16/2012 3:46 PM (GMT -6)   
Scandic,

I was wonderiing if you knew exactly what the flucozanole (diflucan) was treatment for?

fungus? did you test for a fungus that diflucan specifically works for?

or is this a lyme treatment?

The low dose naltrexone if you read about it is for helping jump up your immune system and has been known to help a lot of people.

Naltrexone also I believe is an opiate blocker and does some type trick to your brain in the pain receptor area. I'm not giving the correct medical terminology on this.

There is naloxone and then there is naltrexone. I'm not sure the exact difference.

But it sounds like a brain chemistry has been ticked off here.

and maybe if you were going to do naltrexone to bump up your immune system wait untill you have gotten rid of the fungal infection.

I have heard of a few people that the LOW DOSE NALTREXONE helped exactly and they got their energy back but this was more after having completed a lot of abx therapy or other treatments.

google around about brain effect of naltrexone..not just LOW DOSE . maybe for you even low dose is too much.
or maybe it is the combo.

I really doubt if any company ever checked specifically if LDN and diflucan is a bad combo. It really is not that old of a treatment. but if you google the combo you may find another person this happened to.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Scandic
Regular Member


Date Joined Nov 2011
Total Posts : 79
   Posted 1/16/2012 3:51 PM (GMT -6)   
It's crossed my mind Traveler, my LLMD does holistic as well.

But, since I was only tick-bitten in August, so I am at tick-bite +5 months, and I actually still have the mark from the tick-bite, and I started with the LLMD in October...

In the greater scheme of things, I want to get rid of the Systemic Candida and have a proper go at the Lyme with antibiotics, hopefully this time without scary heart stuff in the way. If that doesn't work, if I still have too many issues, I can talk to the LLMD about natural ways.

I think in view of the "teeth gritting" to get to Friday and get my "girl issue" solved, I will stop the LDN (only taken it for 2 days anyway), as there is simply too much going on at once.

I don't need to tell you how an issue like that can really grind you down. I just want to get past it. (and, though I am generally very pro-natural treatments, in this case, the natural treatment made the problem much worse...)

Also, to be honest, it's also a bit the cost... "standard" medicine I can manage to get a fair amount paid by the insurance, if I go natural, I'll have to pay for all of it myself. (but I'll do it if that's the way...)

Thank you for caring and bringing it up, you see me pop in a lot of desperate posts lately, huh?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13226
   Posted 1/16/2012 4:00 PM (GMT -6)   
Don't worry about the desperate posts, Scandic! LOL! You should have seen my first two years here!! LOL!! Even I was about to give up on me and my desperation! That's why we are here though - to help out when we can, to help ease fears and get each other through the scary parts!

I know exactly what you mean about the choice to go with abx because of the cost of going natural! I did the same thing - only I had disastrous results - so I had to go with the natural. I hope that you aren't faced with a situation like that.

Please be sure to let us know what the doc has to say on Friday! And may you find something to ease things.
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1295
   Posted 1/16/2012 4:19 PM (GMT -6)   
I am so sorry for all your difficulties, Scandic! And I'm sorry that I am still asking more questions than helping or giving answers. I will tell you that all that I've read about LDN is that it is very safe w/ few side effects. However, have also read that some people are super sensitive to it and also, my guess is that there is not much info or research on all the possible drug interactions, since the FDA has not even approved the low dose for the immune system, unless they have since I started it.

I will also tell you this: it has not done ANYTHING for my pain and I did not find any info about LDN giving any pain relief, only blocking the interceptors from narcotics and possibly alcohol.

I have questions on LDN also, for anyone who might know or anyone who is taking it. Does anyone know if this is supposed to be a long duration thing? LIke for years or something? For life? It is supposed to be a cheap drug, but it is not very cheap to have it compounded!

I am taking it not only for Lyme, but because of my CEBV and the fact that my LLMD has said I also have fibromyalgia and CFS. I am hoping to prevent MS and also noted the long list of cancers it is claimed to aid.

I do not know if it has really helped my Lyme. My CD57 went from 60 to 140 (I think) and the Dr was pleased. However, the first CD 57 was Labcorp and the next one was from Quest. I questioned my LLMD on this because Dr. Burryouknowwho says that only Lapcorp does the CD57 correctly. My LLMD claimed that this is no longer true and he has faith in the Quest CD57. IF that is the case, then my abx and LDN have helped my Lyme and all my symptoms are from other things.

Any and all comments appreciated and if this has detracted too much from Scandic's post and questions, I will copy and paste my questions in a new topic.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Scandic
Regular Member


Date Joined Nov 2011
Total Posts : 79
   Posted 1/16/2012 4:44 PM (GMT -6)   
@Bucci - our posts 'crossed" each other, I didn't see it till now.

The Diflucan is for systemic candida. I was on abx, and kept having odd heart issues, rapid heart, culminating in screaming nightmares and non-stop rib vibrations.

I made an offhand remark to my LLMD that when I'd been at my house doctor for bloods to check my liver (LLMD is far away, so house doc helps out with some of the 'regular' stuff), I had shown her my tongue as I suspected yeast on it.

He then switched me to Diflucan 2x 200mg/day, without testing first. But, having said that, after 2 days on the Diflucan, my heart rate calmed right down. It had never been under 90, often going up to 120 for no reason, and suddenly I was at 75, 68 even, so it was clearly doing something.

He also said he chose Diflucan as it has some effect for Lyme too, so whilst he wanted to treat the systemic candida and "clear the field", I was not to worry about being left "exposed" to the Lyme.

After 12 days at that dose, I had a horrible 5 day herx with more scary heart stuff, this time skipped beats for hours on end, and my ribs would vibrate for hours on end too, it was like a sleep deprivation program for the Navy Seals at night, it would literally wake me up every 10-20 minutes.

So now it's 1x Diflucan/day, and he introduced the LDN to try to help the rib vibrations, as the lack of sleep was destroying me. To be honest, my energy levels are generally decent, I'm lucky on that front, it's not been a huge issue. He did mention boosting the immune system.

On the Diflucan alone, I've been feeling fine, calm heart, very little rib vibrating, sleeping decently. The Lyme symptoms - pain in left hand, right knee, etc... all gone.

Introduced the LDN and the rib vibrating appears on the first night, and the second night I think the LDN kept me up all night, and this was starting at a low dose, planning to build. I've also herxed today - coincidence, or did the LDN trigger it.

As I am waiting to see my gyno on Friday to deal with a "girl issue", I think I will leave the LDN aside for now, there's already too much going on. Odds are, I may have to come off the diflucan for a week while I take other meds which I suspect the gyno will prescribe. (will cross-check with LLMD though).

@+Lyme, thanks for sharing your experiences with LDN. Did you have difficulties when you started with it? Affect your sleep? Dreams? From what I have been reading online, I gather it makes a big difference for 50% of the folks trying it, but not the other 50%...

BBRH
Regular Member


Date Joined Jan 2012
Total Posts : 41
   Posted 1/16/2012 8:03 PM (GMT -6)   
I have script for it but did not sleep good on it either...

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 847
   Posted 1/17/2012 7:53 AM (GMT -6)   
If you do some research on LDN, you will see where "most" start out at .05MG and work their way up from there.
 
LDN has been wonderful for me pain wise, as well as for my thyroid...All my thyroid antibodies have come down, and I will be anxious to see what my new BW shows end of this month. I had not be able to tolerate any type of Thyroid meds for the past 3 years, so this has been GREAT for me!
 
LDN can effect your sleep.  It takes about 1 month for most to get used to the LDN and their sleep patterns return.  I now sleep well. 
 
Also, MS patients are normally the only ones Rx'd LDN for more than 1X a day.  Lyme patients should take their LDN between 9-10PM at night.  Those that continue to have sleep issues can take it in the AM, but works best at night.
 
Are you having your LDN compounded, or are you turning it into low dose yourself?

Scandic
Regular Member


Date Joined Nov 2011
Total Posts : 79
   Posted 1/17/2012 8:25 AM (GMT -6)   
The tablets are compounded. The LLMD uses a pharmacy that prepares the more "unusual" medications he prescribes and they ship it to the patients, so I have little control of it. (he's in one country, I'm in another, it can get tricky to go into my local pharmacy and try to have her compound odd things prescribed by a doc in another country)

I have a jar with 126 pills of 1.5mg. The dose was supposed to be 3x of those at night. I started with 1x. I don't think I can break them down as they seem to be prepared to be specifically stomach-acid-resistant.

Thanks for your helpful comments. Did you find that you had an increase in symptoms when you started LDN, or was the sleeping difficulty the main thing at first?

I did not take it yesterday, slept fine, feel much better today. It's pretty clear that the second tablet triggered an instant herx.

I will leave it aside for a few days now, deal with some issues at the gynocologist first. Too much going on at once right now.

I'll give the LDN another go in a week or so, and try to stick with it. To be honest, the key thing it is supposed to do for me is calm the rib vibrations I get at night so I can sleep. But if it makes the rib vibrations worse or keeps me from sleeping, then I don't really see the point...

If it turns out I can't use them, or they are compounded at too big a dose for me, then there's $$$ I spent on yet another med that I can't use. Nattokinase was another one - bought at great expense, turns out it's not just a cyst-buster, but lowers blood pressure. Which is fine if you have high or normal blood pressure, which I don't, I have naturally low blood pressure... More $$$ for nothing, none of it covered by any insurance...

I sometimes think that me & the other patients from the LLMD should get together and have a "meds swap" and swap each other for what I can't take, but maybe someone else can really use, and save us all lots of $$$ to help pay for the LLMD's time... tongue

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 1/17/2012 8:26 AM (GMT -6)   
Yes i also heard that naltrexone helps people addicted to opiates at some course of treatment it helps get the brain chemistry back to normal so if you were NOT addicted to pain meds i could see how it could help brain chemistry for pain also.

I still think a $$$ stool test would be very helpful this far down the line in treatment. I really believe too many people are not specifically treating the parasites and the ticks carry parasites. Why this is not addressed immediately with lyme patients by every doctor is a mystery to me.
I think it may even be part of what we think is herxing. I think some treatments set off the parasites but are not killing them off completely and it is making major reactions and that includes the insomnia and the heart.

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 847
   Posted 1/17/2012 2:44 PM (GMT -6)   
I feel from all my research as well as personal experience, that you are on too high of a dose to start. You need to start slow and low and then every 6 weeks or so increase by .5MG. I have been on it since August and now am finally at 3.5MG.

Yes, you can have an increase of symptoms...but sleep seems to be the worst to deal with.

My LDN is VERY cheap...$ 32- for 60 day supply of 3.5MG compounded..

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13226
   Posted 1/17/2012 3:32 PM (GMT -6)   
Hang in there Scandic, once you have some of these other issues resolved, you might be able to add in these things a little later. If not, it's possible once you've gotten some time in treatment, you might be able to add them in at that time.
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

Tano
Regular Member


Date Joined Jan 2014
Total Posts : 324
   Posted 1/11/2014 5:13 PM (GMT -6)   
I am bumping this thread back up ... I would love to hear any updates or new experiences with low dose naltrexone ..

Most interested in those who had a difficult time in the beginning but stuck with it and saw the benefits ...

THANKS !

LearnLyme
Regular Member


Date Joined Aug 2013
Total Posts : 331
   Posted 1/11/2014 5:49 PM (GMT -6)   
LDN is the first actual drug I went after being dx with MS. My MS neuro would prescribe it to me ONLY after I tried the 7 DMD drugs that cost roughly 60k a year. It took me 8 months to find a doctor to prescribe it for me. I have been on LDN since May 2013 and it has removed most of my fatigue and genuinely believe it helps with everything. It simply kicks your immune system into high gear, like running 20 miles before bed. LDN tricks that mind to increase endorphins to boost your immune to fight. For the first week I had vivid dreams and some insomnia, but after that, NO side effects.

I started on 3mg and went 4.5mg to feel full effects. Research has shown MOST LDN users are at 3 or 4.5 nightly and it takes roughly 3 weeks to feel it working. LDN is one thing I will stay on the rest of my life even after I bet Lyme and MS. It is cheap, simple, and no side effects, also is used for several diseases and cancers. I am an advocate for LDN because of those reasons and it is one "drug" I would NOT give up compared to others that can cause other damage to your body.

I have LDN compounded which comes out to 82.00 for a 90 day supply. But you can ask for a non compounded 50mg pill and dilute it yourself and use a dropper.
08/12 - LabCorp WB Lyme positive for bands 23/41, but CDC negative
12/12 - Diagnosed with RRMS
10/13 - Igenex/CDC Lyme Positive - 23-25, 31+++, 34, 39, 41+++, 83-93

My Story: http://www.learnlyme.com
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