Ellen101
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posted
I just started on low dose naltrexone 2 nights ago and I am amazed at how it has already helped! I was having so much pain in my spine and I got up yesterday with very little. My doc only has me on a small dose to start with and I will keep bumping up after a weeks time, but so far so good. I was so nervous about starting it and now so glad I did! Sleeping is a little tough, but it says that can happen at first. I'm amazed its not used more often. Especially since it stimulates your immune system.
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Sammi
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I am glad it is helping you!
Insomnia from LDN typically goes away within a couple of weeks.
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dbpei
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So glad it is helping you!! I know that I have read that for some, it is miraculous! I hope you continue to have good luck with it.
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posted
It has really helped me as well. It is a benign therapy that helps modulate the immune system and seems to help with pain by shutting down the cytokine response. Not sure why more docs don't prescribe it during treatment.
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nefferdun
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LDN is miraculous. A doctor at Penn state has been researching it for decades and his studies show it does not matter when you take it. I take it in the morning to avoid sleep disturbances.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
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So happy for you Ellen. Glad you posted this so others can see it.
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Catgirl
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posted
Does it increase urination? I've been fighting frequent urination for a while. It's better than it was pre lyme treatment though.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I have some on the way. Hoping for similar, positive results!
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Keebler
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- Ellen,
I just talked with my ND about this yesterday and posed the insomnia question. She said that for those who experience insomnia from it should take it in the MORNING, not night.
She loaned me a book about it but I don't have other details about timing but ask your doctor if you switch the time it's taken. -
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Ellen101
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I will ask about switching it to the morning. Here's an interesting link with some patient responses.
Keebler
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posted
- Ellen,
Thanks for that link. Some very detailed posts there that I'll have to come back to - nice collection.
I've not yet read this book I borrowed yesterday so I can't say what I think about it but it's from my ND and she thinks it's a good book. Lyme has several page notations in the index.
[ 06-29-2013, 01:17 PM: Message edited by: Keebler ]
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Keebler
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- Scott F. surely has written about this on his site, The Better Health Guy (just web search that term and then site search LDN). -
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Ellen101
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Thanks Keebler! I will have to look for that book and research that site.
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Ellen101
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quote:Originally posted by Keebler: - Ellen,
I just talked with my ND about this yesterday and posed the insomnia question. She said that for those who experience insomnia from it should take it in the MORNING, not night.
She loaned me a book about it but I don't have other details about timing but ask your doctor if you switch the time it's taken. -
I just checked with Skip the pharmacist from Skipps Pharmacy. He has a whole section on LDN. He said it really should not be used in the morning as it will not work as well. Temporarily I could use it between 10-11 am, but I would need to go back to using it at bedtime prior to increasing my dose.
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posted
Does LDN do anything for fatigue?
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Sammi
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posted
FYI Gideon's in New York City, 212-575-6868, has one of the best prices. I get a three-month supply for around $61.00 which includes shipping.
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BoxerMom
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quote:Originally posted by Sammi: FYI Gideon's in New York City, 212-575-6868, has one of the best prices. I get a three-month supply for around $61.00 which includes shipping.
Insurance won't pay??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
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posted
You can order 50 mg tablets from River Pharmacy online. You break them up and mix them up in bottled water to get the dose you want. This way you can start very low and work your way up.
For instance, I break up three 50 mg tablets and add 50 ml of bottled water. Every 1 ml dropper has 3 mg of naltrexone.
If you want a prescription you can contact Crystal at this site and she will send you names of doctors who prescribe it in your area. http://crystalangel6267.webs.com
You should get it compounded at one of the recommended pharmacies to be sure it is done correctly.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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If you experience frequent urination or bladder irritation, you may have protomxyzoa. In the Fall of 2011 every time I tried to take LDN I had this problem. It was miserable.
Then I tested positive for protomyxzoa and began treatment for it with ivermectin. When I began LDN after starting treatment I was fine with the LDN.
I have Hashimoto's disease and was having a flare making me hyperthyroid. I could not sleep, had a fever, was constantly eating and lost 20 pounds. When I got up to 2.5 mg my thyroid calmed down. I am off thyroid meds. I have a normal body temperature for the first time in my life.
My son was diagnosed with adult onset type one diabetes in late 2010. He was positive for antibodies so there is no doubt it is type one. He began LDN in early 2012 and has had no further destruction of his beta cells. With LADA, diabetics are usually completely insulin dependent within two years. My son takes less insulin than our diabetic cat! He can actually get by without it with very strict diet control.
I contacted Dr. Zagon at Penn State University who does the research on LDN and asked him about my son. He told me although there has not been research it would not do any harm and might help. He also said it does not matter what time of day you take it.
My brother had hepatitis and was on an experimental drug that he could not tolerate. Every time he quit the drug the hepatitis began to increase. I told him about LDN and his numbers went to zero. The doctors say he is fine now.
I am so grateful for LDN and the people who spread the word about it. It will be difficult to fund trials for the various diseases it can help because it offers no profit. In fact, when it is approved for MS, the drug companies will lose 9 billion dollars a year.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
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- About using in the morning, I just started reading the book and the experts on this say that anytime of the day is fine. Best to keep it somewhat consistent, of course, but the time of day taken does not matter. -
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Keebler
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- About ordering tablets and breaking them up, there are often additives or fillers in tablets. Best to get pure powder from a compounding pharmacy - if possible, of course.
Gluten, corn, etc. can be in the tablets. -
[ 06-14-2013, 02:43 PM: Message edited by: Keebler ]
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Sammi
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quote:Originally posted by Lymetoo:
Insurance won't pay?? [/QB][/QUOTE]
Mine typically won't pay for compounding pharmacies.
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Keebler
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- Insurance (generally) won't pay for any med that is without the additives or fillers.
Other than the first month, where the doses are different each week (costing about $60.) . . .
following months where 4.5 mg is the contanst, it would be about $30. a month -- but less if one can buy a 2 or 3 month supply (more up front but it averages out to be a bit less). -
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Keebler
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- As I'm arranging my first order of LDN, the compounding pharmacy just told me they can put this in a suspension of ALMOND OIL, in a glass dropper bottle.
But my ND has to call to change the prescription order. So, for those who do this, be sure BEFORE to know this.
Were this to be the different dose capsules each week for the first month, the cost would have been about $60 for the first month (twice what it would be after on a set dose).
For the ALMOND OIL suspension, the cost will be about $35-$40. - a good savings that makes the difference in whether I could even afford this at all. Fortunately, their shipping is just $3.00.
This way, it is the pure powder, no crumbing this up from a premade tablet with fillers. And Almond Oil has some advantages over distilled water that some may do. -
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Mine typically won't pay for compounding pharmacies. [/QUOTE] - Why does it have to be compounded? Bummer. Mine will pay, but not all of it.
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nefferdun
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It is the compounded stuff that has fillers which is why you need to be careful where you get it compounded. When you order Naltrexone tablets, it is just the drug with no fillers. I have used it for over a year with excellent results.
It is MUCH cheaper to mix it yourself. I think I got enough to keep myself and the dog on it for 3 years for about $100.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
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- Also, a method that may be easier for some to tolerate: rubbing (a very precise dose) it on the skin. A few promising links can be found with a
Web Search: transdermal, low dose naltrexone
It may require a certain kind of oil or cream and, perhaps, something added that would help that go through the skin and into the blood stream so don't just assume putting it on the skin with just any "carrier" oil would work. It may, or it may not.
Details best found from the experts, one's own prescribing doctor &/or the compounding pharmacies. -
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lax mom
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quote:Originally posted by Keebler: -
I just talked with my ND about this yesterday and posed the insomnia question. She said that for those who experience insomnia from it should take it in the MORNING, not night.
-
That's what I have to do. I tried taking it at night and had the worst nightmares. I was told to take it with some protein to prevent nightmares...didn't help. I was also told that the nightmares would pass in 10 days...didn't happen.
So, I take it in the AM. I didn't realize just how much it was helping me until the hospital Drs took me off of it in Nov (temporarily- as soon as I was discharged I went right back on it). My headaches came back terribly.
Keebler
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- If there is to be a surgery (or, I suppose) there is an injury with a certain kind of pain medicine needed, LDN cannot be taken.
That's likely why they took you off of it in the hospital as they are so likely to give that classification of pain meds there - for anyone who walks through the doors, there could be that chance.
Little do they know that, if no surgery is going to happen (or there's no severe injury), LDN may be best for the patient to prevent the need for any pain meds.
Magnesium is also a much under-utilized pain relief method. And that can be taken by those on LDN. -
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lax mom
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quote:Originally posted by Keebler: -
Magnesium is also a much under-utilized pain relief method. And that can be taken by those on LDN. -
I take Magnesium every night. It calms my nerves and muscle twitches.
posted
Bump. Just got mine in the mail. Figure I will do a week of nystatin first to see if there is any yeast, then add in the LDN if it looks clear.
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Keebler
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- VV,
There is no need to wait (unless you just happen to be starting two things at the same time and wanted some space). Anti-infective measures are pretty much intended to continue.
LDN is just added to one's individualized protocol. Candida will still need to be addressed (or monitored) in a comprehensive approach all throughout lyme treatment (with or without LDN). -
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My point was about making sure to be on Nystatin first bc LDN can flare yeast in the beginning.
Also, I don't like starting any two things at the same time, unless they are specifically syngergistic.
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Keebler
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- Oh, good point about possible flares at the start. Good that you noted that for others to be mindful of, if they start.
I had thought you might have already been on nystatin for some time already. Yeah, it's true, best not to start two things simultaneously (generally - I'm sure there are exceptions especially if an acute infection or emergency situation). -
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Keebler
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- Ellen,
How are you doing with this? -
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Ellen101
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A few days after my post I did alot of heavy cleaning and began to have alot of back pain which I attributed to the activity. I was due to go up to the next level at that time so I increased my dose. Unfortunately the pain seemed to increase as well. I decided to back off the naltrexone for a while and treat candida as it seems as though naltrexone will bring candida and lyme to the forefront. I spoke with the pharmacist and he said it is normal to have some increased symptoms and sometimes people need to stay on a low dose for awhile before moving up. I just restarted a few nights ago at 1.5, no relief yet...
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Keebler
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- This continues with Ellen posting this thread on July 4:
Topic: Had to stop LDN -
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Keebler
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- I continue with this, now into my 3rd week (up to 3.0 mg now and will stay there a while) and am doing quite well after a bit of a rough patch that may or may not have been related.
One night, the pain was so bad - worse than I've ever experienced in all these "lyme years" -- I skipped a dose that next night and then started back with half of what I had been doing (.75 mg, half of the prevoius 1.5 mg) for a while before scooting up to the next tier.
LDN helps to mute the glutamic acid / neuro excitabitly stuff and I really felt that on July 4. The first year, in many, with no seizures. Even with hundreds of very loud booms that made their way through my ear muffs, right into every cell of my body . . . I still felt every boom and felt ill and dizzy but did not feel in that seizure zone as is the typical effect.
Better sleep but then I'm so very worn out by noon that I must drop into an aggressive rest. I need to add back in adrenal support, I know, which I had to drop when prioritizing budget (not complaining but just explaining).
Issues with mouth sores seem a bit encouraging.
I plan on continuing it and see how it goes.
I have only experienced insomnia on the two nights I took it too close to bedtime. I've determined that my best dose time is about 8 pm and I usually get to bed around midnight but hoping to adapt to an earlier lights-out time.
I've not had vivid dreams but have been dreaming some, which is very nice as I usually have no sense of dreams at all.
Sleep right through the night. Awaken feeling a bit more human, too. Nice hope there.
I am also taking Berberine as my main plan.
UPDATE 7-22-19.
Not much time passed after post above where things got so much worse. I could not continue to take LDN - I gave it a few tries but never could tolerate from there. I thought I posted my experience here but likely it's in some other similar thread.
Still, there have been many successes with LDN for various issues. Read up on it from all available sources - and, if trying it out, just start very low & slow and be steady before moving up in dose, even a small amount.
An increase in dose may not be needed if one is doing nice and steady. It is "low dose" therapy, after all. -
[ 08-05-2019, 10:28 AM: Message edited by: Keebler ]
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Keebler
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- For anyone considering this, I think it's vital to have the book (link above). It's been very helpful to me regarding some adjustments I needed to make. -
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Keebler
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