LDN Herx

Hi all - question for LDN users. I started LDN in December at 0.5mg and increased slowly by 0.5mg every few weeks. I started feeling so much better and was able to leave my house for the first time in 3.5 years! In February and March I was leaving the house many times a week, holding conversations, and finally...walking!

Then....dum, dum, dum. Everything hit the fan a few weeks ago. I’m worse than I was a year ago, bedridden, can’t tolerate heat from sauna, sun, or bath (this is a new to me symptom), have horrible flu aches. My brain is worse. Everything is worse. I lowered my dose but it didn’t help. I skipped a day and it helped a little but it went right back to horrible a couple days later.

It’s been three weeks. I had some blood drawn — iron is unusually low, but I don’t think that’s related to LDN. Thyroid is ok. But I’m sleeping 20-ish hours a day which is also a new-to-me symptom.

I hate to go off of it completely! It helped so much! I haven’t heard many stories where is helped right away and then caused a giant setback (or herx?).

I’m aware of all the theories about LDN helping the immune system finally bring stuff out of hiding....but I can’t hold on at this level. I had my chiropractor come to my house and she says I still muscle test for 3mg of LDN (and her muscle testing is legit...has been a godsend to me in the past).

Anyway, any thoughts? Thank you in advance!! ☺️

Thanks The LDN is prescribed by my functional med doc who isn’t a lyme expert and only prescribed bc I asked for it. I’ve been working with a Buhner herbalist for two years and progress was pretty stalled. Herbs saved my life and stopped me from declining. Antibiotics before that gave no benefit and nearly killed me.

I don’t really know anything about LDN. Hopefully others will chime in. I’m so sorry about your huge setback but thrilled to hear what the LDN did for you. That should give you confirmation to know there’s a way out of this.

Did anything else happen that you may be overlooking that could have caused the setback? Perhaps the LDN isn’t the cause or the only cause.

I just searched the forum. Here’s an old thread where someone reported the same experience.

https://www.healingwell.com/community/default.aspx?f=30&m=1588366

WalkingbyFaith said...
I just searched the forum. Here’s an old thread where someone reported the same experience.

https://www.healingwell.com/community/default.aspx?f=30&m=1588366

Thanks! I saw this earlier. I wish it were a little more recent so I could see how this person did. I’m also looking for something that I could show my doctor. This decline was gradual and definitely to LDN stirring something up. I’m just unsure whether to wait it out or give up and move on (hard to do when I now have a routine of scheduled appointments and things that I was starting to do again).

I could not tolerate 0.5mg of LDN. It caused back pain and I also developed a fungal growth in my belly button. Both were symptoms I had not experienced before.

Lyme triggered MCAD with me ( mast cell activation disorder) which is why I reacted to it. Could you have MCAD? I muscle test positive for things and then react to them.

Post Edited (dmw52) : 4/29/2019 6:25:59 AM (GMT-6)

I reacted to LDN right away. CIRS can trigger MCAD as well. I also have mold toxicity. The allergist I went to doesn't think I have MCAD because I don't have rashes or diarrhea. I think most drs aren't familiar with MCAD since it's a fairly new diagnosis. It can also develop at any time.

Resurrection,

Are you sure based on ERMI or HERTSMI-2 testing that you are no longer exposed to mold? I have CIRS too. I’m wondering if the LDN could have backfired due to mold exposure.

What about mold exposure in other places as you have ventured out of your home. Do you feel symptoms and know when you are being exposed outside your home environment?

CFS is a huge symptom of CIRS according to Shoemaker, Since you were housebound for so long, I’m guessing CFS is a major symptom for you. Were you ever treated with cholestyramine? If so, how did you respond to it?

Not trying to get off topic here, just trying to piece everything together.

Someone else mentioned CFS sufferers crashing after activity. Did it feel like that or not?

WalkingbyFaith said...
Resurrection,

Are you sure based on ERMI or HERTSMI-2 testing that you are no longer exposed to mold? I have CIRS too. I’m wondering if the LDN could have backfired due to mold exposure.

What about mold exposure in other places as you have ventured out of your home. Do you feel symptoms and know when you are being exposed outside your home environment?

CFS is a huge symptom of CIRS according to Shoemaker, Since you were housebound for so long, I’m guessing CFS is a major symptom for you. Were you ever treated with cholestyramine? If so, how did you respond to it?

Not trying to get off topic here, just trying to piece everything together.

Someone else mentioned CFS sufferers crashing after activity. Did it feel like that or not?

I removed carpet (which is where my HERTSMI was taken) and put in hard wood floors. I live alone and those helping me said this was the best option since there is no where else to put me. I don’t think there’s mold here. I’ve taken cholestyramine and many binders. Never noticed a difference even with high doses. Yes, I have PEM from CFS. This went away with LDN (it’s back now).

WalkingbyFaith said...
Resurrection,

I’ve thought about you a number of times the past couple of weeks. I was wondering how you are doing and if you ever got to the bottom of why you got much worse with the LDN, if you’re inclined to share.

I hope you are doing better now.

Thanks for asking! It was a die off phase for sure....lasted about six weeks total. I’m now on 4.5mg LDN daily and doing much better. It feels like the LDN and the Buhner herbs are harmonizing as my immune system improves. Still a longgggg way to go but I’m excited to see what the next few months have in store.

WalkingbyFaith said...
That’s very good news!!! Glad to hear it. Did Dr. NN give you more steps to follow after LDN, or is this the main treatment?

Hope you will post updates in the future. We all learn so much from each other and get a lot of motivation and encouragement hearing others’ successes and improvements.

God bless!

NN did give many more steps, but I havent been able to tolerate the strong mold binders (welchol) yet. Still playing with it all.

Resurrection,

Hoping you see this and are doing better than ever!

Someone brought up LDN, and I remembered you had quite an experience with it. Hoping you can give us an update on how you’re doing and any information you can share related to LDN