nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Whenever I take LDN my symptoms explode. Does this happen to anyone else? One particularly irritating symptoms is the urge to urinate 3-4 times a night.
I get hot flashes, burning shins, headaches across the front of my head and in my eyes, muscle pain in my shoulders and down one arm, twitching and sometimes dizziness. This is on 1 mg!
When I quit the LDN and just take Bactrim DS, I feel ok with practically no symptoms at all.
-------------------- 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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ktkdommer
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I don't know, but I had to quit it also. It wasn't worth all the aches and pains. I have to work.
-------------------- 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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Sammi
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posted
Maybe because it strengthens the immune system?
What is the longest amount of time you have taken it continuously?
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
LDN does kick in the immune system, and at least when using it for Crohn's disease, as I do, you have to wait months before your symptoms improve.
It does not always take months, but it depends on the degree of illness when you start.
I guess I would take your symptoms as proving that it is doing exactly what it is supposed to do.
I will add that I had to stop taking LDN because of a mycoplasma pneumonia infection in my guts.
The LDN made my immune system stronger, but that made the swelling and immune response stronger, without the ability to eliminate the infection.
So in that scenario, the LDN did not eliminate the infection, but made my symptoms unbearable.
The moral of the story is sometimes LDN alone can make symptoms worse, without resolution. In my case I had to directly address the Mycoplasma with Zithromax, to rid myself of it.
Now I will be going back on LDN for the original purpose, of keeping my Crohn's at bay.
It can get complicated at times.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
It did the same to me. I could not tolerate it. I still think it is too new. All the reasoning behind why it works is still mainly guessing. I was just expecting sleep issues like all the ldn boards say. I lasted about 10 days on the 1mg dose too and did not have any sleep issues. You are not alone, many people have an issue.
Posts: 433 | From new york | Registered: Dec 2004
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posted
It did the same to me. All my symptoms got worse for about a month and then it started to help me. But the first month was hard.
Posts: 908 | From Albany | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't know if I am overly sensitive to LDN and am getting rare side effects - when taken in 50 mg doses, it can cause headaches and urinary problems.
Or if it is pulling bart and borrelia out of the woodwork attacking it, which would be a good thing.
I am off it now. May try it again later.
The positive side is that I actually sleep much better on it. I take it in the morning instead of at night to avoid the sleep disturbance. I also felt happier and calmer most of the time.
I think it is an amazing discovery - sure wish I could use it myself.
-------------------- 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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posted
The exact same thing happened to me. I have tried it two times a year apart. Each time symptoms go out of control until I am incapacitated. And this is with 2mg. Apparently not the drug for me. I could not stick with it as I am still trying to work. You are not alone in this reaction.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
It sounds like it IS working you guys....why not try again, keep at a lower dose?
Posts: 3528 | From US | Registered: Apr 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I have been on LDN for 1 month now.
On day 13, while taking 3 mg, my pain got worse, especially in my neck and shoulders, and I could not lift my arms over my head for a couple days.
The pain is still a little worse than before, but not as bad as it was on day 13.
I am now taking 4.5 mg at bedtime.
I have not had any sleep issues...if anything I slept longer for a couple weeks.
I plan to stick with it for at least one more month to see if it helps.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nonna05
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posted
If you're on any vicodin or similar med it will cause all kinds of problems
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have read when people use it for MS, their pain is often worse in the beginning. I hope your pain goes away Dekrator.
Dr. Zagon, who does much of the research on LDN, now says not to take over 3 mg. He also says it does not matter what time of day you take it or even if it is on an empty stomach.
I see a new LLMD next Monday and will ask her about my experience. This little miracle drug often puts cancer and auto immune diseases into remission - I sure would like to find something that can put my lyme disease into remission.
Even at 0.5 mg I was getting swelling beneath my eyes. Perhaps my body was detoxing over time and my kidneys could not handle the load. I hope for a simple but optimistic explanation.
-------------------- 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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posted
I was on it for about 7 months -ramped up slowly and did fairly well on it. It seemed to give me a gradual improvement.
I stopped about a month ago and after a couple of days without it i started to get very anxious at times. It started at night(around the time i would take it - perhaps a coincidence) and then it continued for 4-5 days at all times of the day.
I can't say for sure it was then LDN as it is a feeling i have had before(not recently) taking LDN. It is a awful feeling
Also, have been having problems with my eyes and think i read somewhere that LDN can cause eye problems as a side effect.(was not the problem for me as i still it)
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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nefferdun
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Member # 20157
posted
Maybe your anxiety is the endorphins wearing off. Or maybe your body got used to the opiate block at a certain time of day and it just blocked it on it's own, but I have not heard of that. It seems like you would have felt the anxiety before you quit it, not after. It could be an infection coming out.
I have never heard anything about it affecting the eyes. I just read through the side effects for naltrexone, when taken at full strength. Anxiety is common and one of the reasons addicts would not continue to take it. There is nothing about it affecting the eyes unless it is taken in large doses and affects the liver - "yellowing of the eyes".
Sometimes it is really hard to tell what is causing what. I have had the same problem.
Why did you stop it if you were doing well on it? Maybe you are relapsing because you stopped.
-------------------- 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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CD57
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posted
Anxiety at night and eye problems can often be bart. Perhaps it was actually holding off your bart symptoms?
Posts: 3528 | From US | Registered: Apr 2007
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nefferdun
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Member # 20157
posted
That makes sense CD57. cylyme, maybe she is right and now that you are off the LDN your bart is coming out.
For myself, it is possible it was attacking all of my infections causing a major disturbance. Maybe it was hitting the bart in my bladder - frequent urination was one of my symptoms before treatment suppressed it. I will ask the LLMD. I would really like to be able to continue.
This is a rather horrible analogy for how I feel LDN works. I used to live in an apartment when I was young - with roaches. We would kill them here and there but never get rid of them. Always more coming out. Antibiotics are like fly swatters.
Then one day my room mate and I decided to pull the wall paper off the walls. Underneath were hundreds of thousands of newly hatched roaches crawling all over. Repulsive. This is like LDN hitting the hidden recesses of the infection and making everything so much worse.
We moved out. Sorry for the horrendous description but I do feel infested at times, not just infected.
-------------------- 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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posted
It turns out my eye problems were not becasue of the ldn b/c i still have them after having stoped for at least a month now. i think i googled low dose naltrexon and eye problems and found something to the effect that it causes eye problems.Hardleu conclusive eveidence,if you google anything that way you can find what you are looking for but it doesn't make it true.
I do suspect i have bart however, alot of my symptoms fit i believe. i have treated extensively for lyme and some for bart.
I am considering buying one but not sure of its effectiveness especially on bart.
I stopped taking it because i needed to stop seeing my doctor because i could not afford it ($300 a visit) and they were going to stop giving me refills without a visit. Also while i feel i improved a little it was hardly measureable and i was not sure it could be attributed to the ldn so i wanted to see how i did without it.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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nefferdun
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posted
A lot of LLMD will let you do a conference call at three months so you only have to see them in person once every 6 months. Maybe you could find one of them ctlyme.
-------------------- 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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posted
Good advice Neffer- i need to make another appt and will discuss Apparently i erased some of my last post, i thought i read that you use a pe-1 - if so how is it going and do you use it on bart?
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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Dekrator48
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Member # 18239
posted
At the bottom of the page in the link below about Dr Zagon, are links to info about LDN that may be very helpful.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
ctlyme, I do have a PE1 but I do not use the nosodes with it because they were not effective. In fact, I believe being off the abx caused me to get much sicker, not better.
But the PE1 does stimulate endorphins when used on acupuncture points. I use it two hours a day to get the calming effect you can get from 1.5 mg of LDN. It is low level laser therapy - LED lights, most of which are invisable.
It is FDA approved to stimulate circulation to speed healing and it reduces pain It is said to promote production of collagen.
Those are good links Dekrator48. I actually bought the book about LDN but I gave it to my GP to read and never got it back.
-------------------- 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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Member # 20157
posted
Since Keebler used this link in a recent topic I thought I would explain why I could not tolerate LDN back then.
I did not know I have protomyxzoa and it was causing a big herx. Protomyxzoa causes frequent urination, UTI and bladder irritation.
I tested positive for PR shortly after this post and began treatment with ivermectin. After a short time I tried the LDN and had no problem with it. In fact, it was a miracle drug for me and I am still on it. I am for the most part off of all other drugs. I don't even need thyroid medication any more.
I buy 50 mg tablets from River pharmacy and delete it to the correct strength myself. It is pretty simple. You just cut up the tablets so they dissolve easier and mix with the appropriate amount of bottled water. As I am using 3 mg now, I mix 3 tablets with 50ml of water. That way 1ml dropper has 3 mg of LDN.
When I first started, I mixed it so I was only getting 0.5 mg of LDN. I slowly worked my way up. As I am prone to insomnia I take it in the morning.
At the time I began LDN again I was having a thyroid flare from Hashimoto's. I had a low grade fever for months, diarrhea, horrific insomnia, extreme irritation with outbursts of rage and I lost 20 pounds. By the time I got the LDN to 2.5 mg it had quieted down.
My son is a type one diabetic. He has what is called Latent Autoimmune Diabetes in Adults. It comes on later in life and takes up to two years to destroy all of the insulin producing beta cells. Juvenile diabetes is much quicker to leave a person insulin dependent.
It took 7 months to convince my son to try LDN. Since that time he has had no further progression of his disease. He is taking about 10 units of insulin a day but can get by without it if he controls his diet. By comparison, our diabetic cat (type two) takes 8 units of insulin a day!
A diabetic is considered to be in remission if they are only needing 0.5 units of insulin per KG of body weight. In my son's case that would be about 44 units so you can see LDN really works. He was diagnosed 2.5 years ago.
-------------------- 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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CD57
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posted
So are you saying that if we get big flares of symptoms on LDN (mine was anxiety and swollen lymph nodes) we have an infection that has not been treated? I think that's why people go on it though, to treat in tandem with the LDN?
I started with 1.5 and went up to either 3 or 4.5, for 3 months. The symptoms were ridiculous and non-abating, so I quit. I may try again starting even lower. I saw no benefit at all. I did call the compounding pharmacist and spoke with him at length, he said it is not for everyone but I should try it again going lower and slower.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I had it compounded into a liquid so i could titrate ..started at .5ml. Had reaction..then tried it every other day..it was better..for those that have the MTHFR gene mutations, P450 cytochrome mutationes lr the CBS, COMT mutations methylation is tough..also anyone with the P450 cytochromes mutations must not take any morphines or codeines as the build up in the system..i believe LDN is a morphenic drugs so that may be why some have horrible reactions
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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nefferdun
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Member # 20157
posted
I don't know why other people cannot tolerate it. I just know why I couldn't the first few times I tried it. It was hitting the protomyxzoa.
My son and husband are both taking it. We all have the CBS and COMT mutations. I don't know what you mean by a "morphenic drug". LDN blocks opiate receptors for a few hours so that would affect anyone taking drugs like pain killers, alcohol or even tobacco.
LDN does not act like a pain killer. It stimulates the body to produce massive amounts of endorphins which block pain and stimulates the immune system. Endorphins stimulate the production of 300% more regulatory T cells.
-------------------- 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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