LDN 1.5

[carries]

Hi! I have been taking LDN now for a month at 1.5mg……is it okay to jump upto 3mg month #2?

[Kats]

Hi! That is what my AP Dr recommended, and what I did. I had no ill side effects except waking up like clockwork at 3:30 in the morning. But that seems to be resolving.

[carries]

Hi Kats! Do you take mino zith and amox every day??? I am looking to throw Zith in the mix but I am not sure how to do it….I have read every 10 days then I saw some on Tues and Thurs….how are you feeling overall

[Kats]

Hi Carries!

I have returned to a Mino/Clindy protocol this past two months. I was previously on a Cpn protocol which included doxy(daily), zith(MWF), and amoxy(daily). I went downhill big time on that combination, and got my first joint damage, as well as my first positive RF during that time. So unfortunately I can’t be of much help to you re. adding zith/amoxy to your protocol.

I’m currently not great…my knees are a mess, and my wrists are only functioning thanks to some recent cortisone shots. I’m just praying the mino/clindy will do what it’s supposed to soon! I take it you’re not feeling so great either? 🙁

Here’s to us feeling better soon!
xxxx

[carries]

Hi KAts! Do you think it is the LDN herxing that is making us both feel so awful????

[Kats]

Hi Carrie,

I wish I knew! I am worse than ever today. I’m the same as you in that getting up and sitting down is a nightmare. Now my shoulders are affected too as well as my jaw and feet.

Hopefully someone else will know something about LDN and Herxing and answer your other thread.

Hugs,

Kats

[PhilC]

@Kats wrote:

I have returned to a Mino/Clindy protocol this past two months. I was previously on a Cpn protocol which included doxy(daily), zith(MWF), and amoxy(daily). I went downhill big time on that combination, and got my first joint damage, as well as my first positive RF during that time.

Hi Kats,

How long were you on the Cpn protocol, and when did you start taking LDN?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Kats]

Hi Phil,

I was on the CPN protocol for 6 months, and I am just starting my 3rd month on LDN.

Kats

[PhilC]

Hi Kats,

Perhaps you should have stayed on minocycline when you switched to the CPn protocol. Some people use minocycline instead of doxycycline when switching over to a CPn antibiotic protocol. It makes sense to do so if the person is already on minocycline and it seems to be helping.

When you were on the CPn protocol, how long were you on azithromycin, and how long were you taking 200 mg of doxycycline per day? Also, were you taking amoxicillin the whole time, or was that added later?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Kats]

Hey Phil,

Perhaps you are right about staying on the Mino for the CPN Protocol. The good thing is now I have seen Dr. F in Riverside, so I have his guidance. I have just asked him if in light of my positive IgG CPN result, I should be taking any additional antibiotics. I am waiting for his reply.

When you were on the CPn protocol, how long were you on azithromycin, and how long were you taking 200 mg of doxycycline per day? Also, were you taking amoxicillin the whole time, or was that added later?

I was on the zith the whole time, but built up to 3x a week. I was only on doxy 200mg/day for about a month, as I was working my way up to that dose over the 6 months. Yes I was on the amoxy the whole time.

[carries]

Hi Kats! How have you been feeling? I am much better…it must be the 10mg of prednisone. I want to lower this by tomorrow to 7.5mg. I probably shouldnt quite yet but I want to get off this stuff. I have discontinued the LDN but will retry once I am off prednisone.

[MINOCINMAN]

@carries wrote:

Hi! I have been taking LDN now for a month at 1.5mg……is it okay to jump upto 3mg month #2?

I was thinking about adding LDN to the mix, but the real concern that and I think many have is that LDN boost the immunity system and I would think DR T, DR F, and DR S would tell you that this is a big no no to do anything to boost immunity.

I asked Richie about this, who I have noted is very lerned on this issue and he agrees. I have noted both Kats and Carrie have had severe flares, so I am wondering if this is the cause??????

[carries]

I agree with you….I have been told by my rheumy to stay away from anything that boost the immune system bc our immune systems are already in overdrive.

[PhilC]

@MINOCINMAN wrote:

I have noted both Kats and Carrie have had severe flares, so I am wondering if this is the cause??????

It’s definitely a possibility. I’ve read reports of similar reactions to LDN, here and elsewhere. Here’s one from this forum:

viewtopic.php?p=24101#p24101

I believe that people who have (or had) a lot of inflammation should approach LDN cautiously. In other words, start at a low dose (e.g., 0.5 mg to 1.5 mg) and work up to a higher dose slowly and in small increments (e.g., 0.1 mg to 0.5 mg). Better to be safe than sorry.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Kats]

Hi Carrie!

I am feeling better today finally, but similarly to you, it is because of two very large cortisone shots in my knees yesterday. O wow that stuff feels like a miracle!

I have discontinued LDN and don’t think I will start back on it. I have been thinking more and more that it really doesn’t make sense for RA and similar inflammatory diseases. I do think it is what put me into this horrible flare.

I got a prescription from my rheumy yesterday for sulfasalazine, and I have some more thinking and research to do before I decide to take it. All I know is that I am getting joint destruction, and fast, and my rheumy looks at me with real sadness and pity which kind of bothers me but also scares me.

Kats
xxx

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