seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The last 2 days I started taking 2 mg of this drug at bedtime. I just feel terrible. I wake up in the middle of the night maybe 1.5-2 hrs into my sleep, which is irritating.
I just feel groggy. My muscles are very, very weak. I'm getting chills. My knees are hurting very badly, which they never do. I just feel dead. Why the hell do so many user accounts on the LDN webpage say this drug is a miracle, helps muscle issues, makes life perfect again, etc. and I feel like this. My anxiety also seems to go up more on it.
It's looking like this may be a short venture if this doesn't subside. It's so demoralizing to hear how it helps 50%+ of patients and you're feeling much worse from it. I'm literally so tired I'm falling asleep at the computer.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You aren't alone. Do a search.
I've said I felt like I was DYING 1-2 hours after taking. Had sweats, shortness of breath, heart palps, weakness, dizziness.
This only happened while on abxs...I had taken 4.5mg for 2 yrs prior to lyme dx for MS with no problem. Then began to get stiffness so down to 3mg.
As soon as I added the Lyme treatment wham. Dr. Bihara (founder md of LDN & my MS Doc) couldn't explain.
I just stopped. Throughout the yrs of abxs did try it again SAME reaction.
Been off abxs, and now can & do take without a problem.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I don't see myself taking this w/this reaction. I can't function at this level of fatigue and I need to work p/t to survive. My whole spine feels stiff too. It's terrible. My BP jumped to 170/95 this morning and my heart feels like it's pounding too.
I'm sorry to hear you struggled too. Some things are not worth it!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Try taking it in the morning instead.
Posts: 8430 | From Not available | Registered: Oct 2000
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lou, does it take a while to kick in? I still don't understand exactly what this is supposed to do.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seek -- It is supposed to boost your immune system -- sounds to me like it may be doing that and you mey be herxing.
Will post in a month or so after hubby tries this. It is item number 3 or 4 on his list of things to try from his LLMD neuro appointment.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I agree with seibertneruolyme.
You can't take LDN in the morning. It is specifically supposed to be taken at bedtime because it blocks the endorphins in your brain at around 2 AM...this is when your body produces enorphins. The result is your body thinks it is "short of endorphins" (when it really isn't) and produces more which has a positive effect on your immune system.
It can take a few days or a week to get used to it because it can cause some sleeplessness the first few days.
I am not a doctor, but I theorize that you are herxing because it is working and you are killing bugs. Your symptoms are all lyme like. LDN really isn't supposed to have any side effects.
I would say try it for a week. The sleeping thing will get better.
I'm on 4.5mg / night and have been since May 2010. I love it. I think it is what has helped me the most. It also brought my libido back!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Seek, It took awhile for me to get use to it. I felt sooo sleepy the next day, lethargic on 2mg tried to up it to 4mg and couldn't stand it.
I'm now on 1 mg. Sleeping is good now, no more wild dreams and not so sleepy in the a.m anymore. I take it at night.
I too really don't know if it's doing anything at 1mg but Dr. told to continue, so I am for the time being.
Hang in there.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
seekhelp, from what I understand LDN can cause temporary insomnia for some people. I believe it can last about two weeks. This was true for me. It affected my sleeping somewhat for about two weeks, and then it was better.
It is supposed to help the immune system. Some of the symptoms you describe sound like Babesiosis symptoms to me, so maybe it is helping you to fight the Babs? I am just speculating of course.
Posts: 4681 | Registered: Oct 2000
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I got horrible throbbing and heart problems with 1.5 mg. I use the cream and now take only a tiny bit every day and a bit more the next day. Doing well. If you are very sick you need to start slowly - you need weeks to get to full dose.
Posts: 1834 | From US | Registered: Oct 2008
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posted
I previously posted that I thought my LDN was working, but I have now stopped after one month's use.
During the past month I have had a significant increase in migraine headaches.
Not sure if its from the LDN or from stopping my babs meds before adding in LDN.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Hey everyone. I took a mini-break from Lymenet. I'm still on the LDN. I'm not sure what to make of it yet. It's been over a week on it now.
The first two days were brutal. Bad fatigue, off-balance, anxiety was elevated, heart felt like it was pounding, blood pressure increased to 160/95, etc.
Then I felt great for 5 days. My head felt 5x clearer. i felt smart again. My energy was so much better. i was waking up feeling alive. I walked a good amount with my family over the weekend. Fast forward to yesterday. I feel horrendous again.
Gutwrenching anxiety, heart pounding feeling again, bad head pressure / sensations, terrible fatigue, left arm felt heavy, jaw pain, etc. I feel very bad today too. My muscles also feel so stiff. My back feels like a board.
I have been off all Abx for 20+ days to give myself a break and assess where I'm at. I just don't know anymore with this illness whether ir's always cyclical, if Mycoplasma Pneumonia continues to be a culprit for me, babesia, etc.?
All I know is wow was life nice for those few days. I was working very hard though and probably wore myself out. I took on a lot of work (job-related). I work part-time from home when physically and mentally able.
When you get ill constantly and never get week or more reprieves, there's no way to know what's the root cause (meds, Lyme, babesia, mental, etc).
What do you think?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I think I'm throwing the towel in on this drug. I feel like crap. Not worth it. I'm guessing I'm the 50% who don't benefit. Oh well.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
seekhelp, do you think your symptoms could be from stopping the meds?
Posts: 4681 | Registered: Oct 2000
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, it could be Sammi. It's so hard to tell. I'll be back on something very soon.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
You need to get started on very low dose.
I started on low dose and I am now on 50 % of 3 mg. Then you will only have the positive effects.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm on 2 mg a day at night. That's pretty low right?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I had a severe herx that lasted months from the LDN! But I am finally seeing some benefits now. It does work but iin my case it took about 4-5 months to start feeling better and see benefits.
good luck~I hope this helps~
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
I tried 3 different times to take 1.5mg and all three times a had continueous chest tightness for about 2 to 3 hours in the middle of the night. Suck cuz i really want to take it> Maybe it's a herx but my llmd said not to take it again.
Posts: 163 | From maine | Registered: Oct 2003
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
1.5 mg is much too high to begin with(for some people).Just take every night 1/4 of that dose.
I started low dose and see benefits every day. Only the first day when I did not know we have to start on low dose I crashed. Then a member gave me the advice to start low dose and it is soo helpful.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
How do so many of you have such confidence it's a herx all the time from everything you take? it seems so guessing at times? I don't get it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
In my case it is a herx - throbbing is only in the infected areas but not anywhere else.
If you take less and the problems get better than you know it was a herx.
LDN works very well and if you have inflammation it really kicks in soon.
There is no reason to hurry with LDN. After some weeks it is easy and you can take more.
Posts: 1834 | From US | Registered: Oct 2008
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posted
start ldn Cream last night, I took .5 mg not even 1.5 within 20 mins i was jittery and body pain exploded. I woke up this morning with UNGODLY anxiety, i had to take something. My anxiety has been a big issue for me lately. Has anyone else had an increase in anxiety and did it get better? should i stop taking it? I am going to go down to .25 tonight ...ANy Ideas???
Posts: 229 | From front royal, VA | Registered: Jun 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Yes go down as low as you can - take a small bit only. You need eventually four weeks to get to a higher dosage. You also can wash the cream off immediately if you feel horrible, it helps a bit as well.
Take a day off if necessary.
I had no anxiety problem but my body is throbbing all over.
You will need one to two months to get to full dose. On [email protected] you find many people with your problems. Stay on .25 for weeks, no new suffering please.
Posts: 1834 | From US | Registered: Oct 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Inflammation = anxiety.
If you can control the inflammation, you will probably find the anxiety will go with it.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
Is it possible to stay on opiod pain relievers while trying LDN? Or do you have to go off all narcotic pain relievers if you start this? My dr said off narcotics, but I know I would be in so much pain without them.
Posts: 113 | From CA | Registered: Jun 2010
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I'm literally so tired I'm falling asleep at the computer.
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I'm still on the LDN. I'm not sure what to make of it yet. It's been over a week on it now. 
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