CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi -- I gave LDN 3 months, my dr said I should have known within a month if it was helping. Instead my anxiety was kicked up to a whole new level, plus my lymph nodes were swollen all day, every day. Obviously it was doing something to my immune system, but nothing for inflammation.
Did I not give it long enough? I wanted so badly for it to help.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I started LDN in Novemeber....it kicked in my pain terribly for the first month, then it subsided and I've had much relief in inflammation. LDN and going gluten free made a huge difference for me. You could call SKIPS Pharmacy in Boca Raton...they are LDN specialist and SKIP is an educator on LDN. He takes it himself for RA Perhaps he could answer some questions for you.
Posts: 747 | From Utah | Registered: Apr 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
thank you I will!
Posts: 3528 | From US | Registered: Apr 2007
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carefully consider interactions with other supplements that you're taking. I had panic attacks with LDN + flaxseed oil (approx 1 tbsp daily). I know it is strange, but after discontinuing flax oil, I am much better. Currently only LDN + small amounts of silver and it is OK. Oh, and dairy/gluten free as well. I take very small amounts of LDN - 0,5mg daily so you may adjust your dose.
Canga
Posts: 14 | From Poland | Registered: May 2012
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
LDN does not help directly with inflammation. What it does is steps up or normalizes your immune response.
With a person that is immune deficient, it allows the immune sytem to kill a pathogen that it was to weak to kill previously. It may also moderate an inaprropriate immune response, and this may, in some cases, help with inflammation.
You need to address the inflammation with another method. inflammation is a normal part of the immune response, but with Lyme, you likely are not going to kill it all quickly. This means the inflammation will not go away quickly because the pathogen is still there. Not a normal situation.
The LDN is doing what it is supposed to do, but the inflammation needs to be reduced another way.
I gave my wife Ginger, Turmeric and Krill Oil to control inflammation.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't know what is happening in your case but the first time I tried LDN it was causing me to urinate constantly. Turns out I had protomyxzoa which causes urinary irritation and I was having a horrible herx.
When I tested positive for PR and started treatment with stromectol, LDN was no problem. Now I am in remission with it. Remission being very tenuous as PR comes back so easily.
-------------------- 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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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Maybe it is causing you to herx because it helps the immune system?
What dose were you taking? Maybe you could try a lower dose and build it up gradually.
Posts: 4681 | Registered: Oct 2000
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I agree with Dan that it is upping your Immune Response, but I doubt your killing anything.
Probably causing Cytokine storm by mistake b/c of the upregulated Immune response. This was the point I was making on the thread I began about Treating for so long and just getting worse.
Listen to your body and say No when it's telling you No.
Or, you can be tortured with that horrific anxiety and believe it's a Herx from die off. CD57, you have treated a long time now. Shouldn't your bacterial load be nill by now ?
Much more going on than most of us can imagine including the LLMD's.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I just had to stop, after taking it since Sept. 2012....I developed a severe autoimmune reaction. In Lyme patients, it can cause constant die-off.
Posts: 116 | From California | Registered: Feb 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I was on the lowest dose and caused great anxiety. Got right off.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Did any of you that quit LDN get tested for protomyxzoa?
-------------------- 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
Nefferdun, very interesting comment about PR. I have tried LDN twice and could never get over the insomnia. So I stopped. I do have PR. I cannot get my LLMD to prescribe long term parasitic meds right now. Working towards it.
-------------------- Winni Posts: 150 | From Nebraska | Registered: Mar 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
One Dr. started me at 4 mg. and I couldn't tolerate that. Probably 2 yrs. later another Dr. started me at 1.5 saying 4 was way too high to start at and no problems at 1.5. I will try 3 soon.
Posts: 2541 | From Northeast | Registered: Jan 2008
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