The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Love it. On 4.5 mg. Brought my libido back. No other side effects, but I feel pretty GOOD.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
steelbone, I am just thinking about starting and wanted to ask you for a pm about the doctor. I would need it for energy.
Posts: 1834 | From US | Registered: Oct 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
bcb1200, I need my libido back
Are you male or female? I've been holding off on the LDN. Does it boost energy for anyone?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I spoke with Dr Bihari in NYC who was working with it. He said it works for half of Lyme patients. So all you can do is try and see if you're in that half!
Posts: 13171 | From San Francisco | Registered: May 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
35 yo male. LDN isn't about boosting energy. It is about boosting your immune system. check out lowdosenaltrexone.org
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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posted
Been on it for about a month. Started on 2mg. ramped up to 4mg. Made me really tired the first couple weeks. Don't notice anything else yet.
Given to boost my immune system.
-------------------- 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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posted
I really like it, and feel it has boosted my immune system.
I was worried about the loss of sleep intitially, and the vivid dreams, but never had any of that.
Posts: 964 | From san diego | Registered: Oct 2009
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
no, but it doesn't hurt if you do. There are literally no / very very minimal side effects.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I take LDN for Crohn's, so in my case, it is probably forever unless I could cure it somehow. This is normally the case for any autoimmune type disease in which LDN is used as a treatment.
For Lyme it is likely just used until you have eliminated the bacteria, if you can accomplish that. Since it is the Lyme that is suppressing the immune function, it is not needed once it is gone.
Some people take LDN as a Cancer preventative, especially if the family history indicates a strong likely hood of them developing Cancer at some point.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I should report that I do have more "colorful" dreams while on LDN. I have not had insomnia.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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posted
I really like it. Was on it, up to 3 mg/day, feeling much more like "me" and energetic, less cognitive crap, then i ran out of $$ and had to quit.
Now I'm back on it, up to 2 mg/day, and am noticing the same positive effects. I do have some pretty weird dreams; I woke myself up laughing and talking the other night! Nothing horrid, though.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
I started about a month ago at 3 mg - did notice my sleep was disturbed for the first few days - but that settled down.
I feel like we may raise it to the 4.5mg when I see the LLMD next week.
From my reading, it is very good for immune function, and studies in CA have said "helps Fibromyalgia pain."
Other than sleep issues (minor) there doesn't seem to be other negative side effects - very positive!
Posts: 238 | From Jackson, TN | Registered: Mar 2010
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
So I'm assuming that if it boosts immune function it may cause herxing.
When I've tried other immune modulators I herxed like a son of a bee...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, some people get horrible herxes when they start LDN. That seems to happen to only a minority though. But it can happen. So be ready, especially with your past experiences, lymeorsomething.
For me, I didn't herx right when I started it (started at around 4 mg too), but I herxed once I was on it, then changed to a new antibiotic. That is when I noticed I was herxing more, probably from the combo of the antibiotic and my immune system finally working.
But the herxes were not horrendous. They only lasted like 5 days, like you think of the "classic" Lyme herx.
I had never been a classic herx-er before, so I was impressed.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
Has everyone taken LDN along side their regular abx without issue?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
That is what I do, take it alongside all my antibiotics....it hasn't been a problem at all.
And to whoever said they had to stop due to cost...where I"m getting mine from now, it's about $32 a month, out of pocket. If you want the name of the pharmacy, PM me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Thanks Hoosiers. I have about a 3 mo. supply from a previous LLMD. I never used it but I'm about to give it a shot.
Yes, you're right about the price too. It's not really expensive if one needs to get their own supply.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
In case anyone wants to know where they can order LDN.
I order mine from Gideon's Pharmacy in NY. It doesn't go through insurance, and the cost is $15 plus $7 shipping. You can order more than one month at a time.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I only pay a $10 co-pay. My compounding pharmacy is now submitting it straight to the ins co. When I did, they usually would only pay 1/2.
I just went up to 3 mg (chicken). I started last year and quit due to sleep issues. Gave it a shot again. Not sure if it's helping or not, but the sleep issues resolved after a few weeks, and really have no side effects.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
For those who respond to LDN, when are benefits felt? Are they immediate or does it take some time?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I never get a boost from anything, so just keep taking it, hoping it's doing some good.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Keltyl, I hear you. Not too much gives me a boost either. Just started LDN at 4.5 mgs. I'll give it a fair chance and report back.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I have been on LDN for about 4 1/2 mo. now. At first I had a sence of well being. I didn't feel depressed before LDN, but felt happyer right after I started it. My LLMD had me start at 1.5 mg for the first mo and 3 mg the second mo. and 4.5 on the 3rd mo.
It seemed to be helping. I started night sweats and someone told me maybe babs waking up from my improved immune system. Now I am on Mepron, Aztromicin. I am on mo 2 of mepron and am just starting to feel alittle better. So it is hard to tell if the LDN is working. I was herxing from the mepron.
Someone told me that you will really start feeling good after 4 mo.
I will continue to take LDN, I believe it will help me.
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
LDN does not work quickly, as it works differently than most other drugs. It just makes the immune system more effective, and that takes time to show up in the form of results or feeling better.
The normal time frame to assess results is six months at least.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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