posted
after being off abx for 7 months (because of stupid beliefs) I went to my LLMD yesterday... I am VERY sick.. I Couldnt walk in and had to use the wheel chair out.... I couldnt barely hold my head up or speak to him... HORRIBLE... I am bedridden again.. BLAH!
I am done farting around.. so to speak! And I am ready to get back into this for real. My Dr. askes me why I got off the battlefield before the fight even began... Good Question??? FEAR and thinking that i knew WAY better than someone with over 20 years experience, listening to other people and NOT belieing I had Lyme in the first place.
He looked at my ++ on band 31 and said... Have you ever had the lymerix vaccine, in which I replied NO... well then, he said, YOU HAVE LYME, now lets get you better.
So I am being started on LDN because we feel I DO have an autoimmune component to this conidering all of the AI markers I have positive AND the fact that I didn;t respond well last time to abx. SO I will be taking LDN and starting VERY slowly on abx because of yeast issues and bad gut issues.
Has anyone had symptoms relief from LDN? I am nervous about meds because I have ALWAYS been a naturalsit which was half the reason I stopped the abx to begin with. BUT I am ready to fight this thing and get my life back....
SO, has anyone had trouble with LDN? help from it? etc???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I have been on 3 mg for about 2 wks. I know there are othres taking it too b/c there was a post awhile back about not being able to sleep.
I posted today to see if some them have gone to taking it in am b/c of the sleep issue.
I was sleeping ok till the last 3 nights, now my sleep is terrible. It is probably really too early for me to tell, but have not noticed any significant changes.
My LLMD said I could take it in the am if I had a problem, just hoping it would level out. It's suppossed to be taken between 9pm and 2am.
Good luck, hope you get other replies.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
Shandy, Did you ever get tested for Pyrroluria KPU?I went for yrs killing things and never got better. Felt like a continous herx. I tested positive for KPU as are many others.I know I was not detoxing right. This seems to be a big part of the puzzle for chronic illness. Sending you healing Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Healing.....What is KPU?
Posts: 847 | From upstateNY | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've been on LDN for several months now and it seems to be helping with the pain and inflammation. I did have vivid dreams for the first couple weeks but they did not wake me or keep me from sleeping normally.
Start on a low dose and ramp up slowly. It can take 2-3mo before you notice any positive changes.
As for helping with autoimmune issues, I have no experiences, you may respond differently or need a lower dose? Google LDN, there is a very helpful website with a wealth of information and a forum where you can ask further questions.
Oh, and don't forget, you should not take narcotics with it. If you are on a narcotic pain medicine you may need to talk with your doctor about alternatives and wean yourself off before starting LDN.
Good luck Posts: 5237 | From here | Registered: Nov 2007
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Sammy and etal:
Are you taking the naltrexone alone, or in tandem with antibiotics. One of my docs says she only uses it without antibiotics.
I may be a candidate apparently.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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My LLMD is putting me on LDN with ABX.... I hope that is ok? I am also on some herbs and supplements..
I am supposed to start on 2mg a day... is that too high? Is that what everyone else is on??
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
The only medications you cannot take with LDN are any opiate based pain killers or anything else with opiates.
Some doctors start you out at a full dose, some ramp you up. It is a matter of preference.
I have been using it for about two years for Crohn's Disease. I started at a full dose. I have had no problems with it other than the temporary vivid dreams in the beginning. I liked that side effect.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
Keltyl, Do a search here for Pyrroluria,Kpu or Kryptopyrroluria. Also my Md wrote this article http://drrandy.org/article.html Not many docs are into it yet,sorry to say. If I had known I had this problem I would have probably not gone through 27 yrs of hell. Take care Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
So, are any of you having trouble sleeping? I am on 2 mg. Okay till a few nights ago, then sleeping problems. Today I started taking it in am, hope I gave it a long enough chance but I need what little sleep I get.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
UnexpectedIlls, I am sorry you are feeling so bad.
I have been on LDN for a few months now. I feel it is helping me, but it is hard for me to define exactly how it is helping. But if something helps, it is good!
I hope it helps you too. I am also on antibiotics.
From what I understand, it can affect your sleep initially but that should go away within two weeks or so.
Posts: 4681 | Registered: Oct 2000
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
AFter 7 years of aggressive antibiotic/anti-malarial treatment, and no cure, I developed drug induced lupus.
I am currently off antibiotics, and relapsing quickly.
I am also beginning the bionic 880 treatments in Germany.
I have heard about this LDN. Think it would stop the lupus and enable me to go back on antibiotics?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
it's certainly used for autoimmune illnesses. I'm sorry to hear about this outcome of your treatment!
-------------------- Symptom Free!!! Thank you all!!!!
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I started with 4.5 mg out of the gate, then a few nights in started getting sleeping problems. I have backed way off. Am trying 3 mg now.
Posts: 3528 | From US | Registered: Apr 2007
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I am so sorry for what you are going through.... Yes, LDN is used for autoimmune diseases.
Now I have been readong about it's effects on LYME, and supposedly it does NOT wirk for lyme.... almost every account I have read of someone using it for lyme has had to stop due to bad reactions... Not sure why this is??
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Shandy, what antibiotics are you on? Are you treating anything besides Lyme? are you treating for any coinfections?
Sorry, I'm not familiar with your history, although I watched some of your U tubes tonight.
Don't give up hope.
Posts: 975 | From California | Registered: Apr 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I am on LDN....I really like it, seems to help with something.
I do herx harder on it, when I add a new abx, it seems, but that is a good thing. It isn't like herxing misery.
I don't test positive for lupus or have a positive ANA. LDN treats more than just autoimmune....it just helps the immune system in general.
I wouldn't be afraid of it, I'd try it....not much to loose.
On another note....considering your symptoms, I would also look into dysautonomia and the meds to treat that, if it might apply to you.
Lots of people with Lyme benefit from being aware of and treating their dysautonomia/POTS. I think one of the sites is www.dinet.org.Posts: 4590 | From Midwest | Registered: Jun 2008
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